I think I'm in trouble!

[VDC]

Hmmm.......I think I might be in trouble in cancer land! I was originally DX'd with DCIS in October and again in November. Rather than run directly into surgery, I chose to apply to an immunotherapy trial. I was accepted at the beginning of December but was told that they weren't starting any new patients until after the holidays and they would call me at the first of the year to let me know when to come. The second week of January I called and was told that the research team was moving to Tampa Florida and they were not yet sure if any patients would be added before moving to Tampa AND that they didn't know how long it would take to set up their lab in Tampa. I was told that I would be called at the end of January with more information. At that point I decided two more weeks to sit with DCIS was probably a good gamble. Today I called and left a message asking for an update. I didn't receive a return call.

However, the thing that worries me is that yesterday I realized that my breast is quite sore and doesn't feel "right." I stopped in my tracks and thought back to when the "odd" feeling started and realized that I have had pain for 3-4 weeks and just didn't notice it. (I had the biopsy from hell and had side effects and pain from that for a VERY long time) I also realized that the "thick" feeling in my breast is much larger than I remember.

I suspect that DCIS has gone invasive on me! Actually I'm pretty sure of it. I have a diagnostic Mammogram scheduled for Thursday which should at least indicate how much spread there has been.

At this point I decided to call my Mayo oncologist and I left a message asking what new tests etc need to be run prior to setting a surgery date, given my current set of symptoms. I didn't get a call back, but I am certain my oncologist will call on Monday. She is usually pretty "with it" in getting back to me.

...and then I could hear from the immunotherapy trial too.... and what do I do with that? If they say I can start immediately? do I run to surgery or do I start the immunotherapy trial.

It occurs to me that if the current rate of change continues, I will be in a heap of trouble by the time surgery can be set up. It seemed so reasonable to pursue the trial back in November.......

Sigh.

[thinkpositive]

I wouldn't jump to conclusions and assume that your DCIS is now invasive. However, I do understand that once you get a diagnosis of cancer, it is easy to have your mind go to those dark places and assume the worst case scenario. I also do that at times. It causes a great deal of stress which isn't good for our health.

I'm glad that you have been scheduled for a diagnostic mammogram and that you have a call into your oncologist. I'm sure that after having this test and speaking with your oncologist you'll have a better idea of what you are dealing with. This will also give you an idea if it is wise to wait for this trial or if it would be better to get treatment right away.

So many of the decisions that we make along our cancer journey are very personal in nature and therefore you must make a decision that YOU feel good about.

I'll be thinking about you next week and sending positive thoughts your way.

Take Care,
Brenda

[Carol Ann]

I don't have any advice, but just wanted to you to know I am thinking of you. Until you really know what is going on, you can't decide. You need the facts given all these symptoms you've been experiencing. Then you need the probable outcomes of whatever path/decision you decide given what the diagnostic mammogram reveals. And like Brenda says, you have to make the decision that is the right one for you.

Not a fun place to be right now, I know. :( But as so many others have said here, don't borrow trouble!! Easier said than done ... keeping my fingers crossed for you!!

Carol Ann

[VDC]

Thanks for the encouragement. Of course, I need all the information before making decisions. But I'm pretty sure all is NOT well. I know my body WAY too well! Actually I usually diagnose myself before my doctor does. And my family has a long history of dealing with doctors and diseases.

(our son has a very rare medical disorder). I was the one that diagnosed him and the one that helped him defy the odds. It was predicted that he would die by the age of 20. He is 23 and shows no evidence of heart disease! His disorder causes heart disease at a young age. We defied the medical protocol and decided to pursue a different path than recommended. And, last year his doctor admitted that we had been right in our approach!

So, coming through our other medical experiences, (my mother and father as well), I tend to be my own doctor. I take nothing at face value and do all my own research. Then I decide what path to take. Unfortunately it takes a very special doctor to work with us!

All this to say that I am keenly aware of my body and changes that occur to it. What I am experiencing now is NOT normal for me. It could be related to the two biopsies that I had, but it seems unlikely since those were 2 and 3 months ago. I am sure there are other things that could cause the "thickness" in my breast, but IDC (or worse) seems the most likely. I'm not overly upset about it, just the "big sigh" and a "really?" ...and since I do all my own research this is the point where I start in reading all those research papers and thinking about the possibilities. I like to be prepared! This is just a VERY BIG "DARN IT"!

[Lauriesh]

I don't know the size of your dcis, but when I was originally diagnosed I had a large dcis tumor ( confirmed by biopsy). I had a mastectomy 4 days after being diagnosed, and it turned out that along with that dcis, there was a tiny area that was invasive and that had already spread to my lymph nodes.
biopsies are not perfect, especially if the tumor is large. I don't think even the drs know exactly what they are dealing with until they get it out.

[Carol Ann]

That is certainly very true, my HER2+++ tumor was found in the "healthy" breast after a diagnostic mammo, an ultrasound, and an MRI all said that breast was fine. Either the tests all missed it ... or it just sprang up in between the MRI and the surgery. We'll never know for sure.

So good that you know your body and you are doing the research!

Carol Ann

[VDC]

Yes, agreed. The only reason I waited THIS long was because of the clinical trial (vaccine) that I was admitted into. Then the delay...... Now, here I am. I will know more hopefully on Thursday as long as the radiologist is willing to talk to me about what we see with the diagnostic mammogram. We DO have the other mammo's to compare to which is helpful. I'm just hoping he will talk to me rather than sending the results to my doctor. The ordering doctor has no idea what is going on, but I needed it ordered by a local doctor. My oncologist is at the Mayo clinic and not local. So, in order to have a diagnostic mammo local, it had to be ordered by a local physician. My gynecologist had retired so I called a "random" doctor asking for the diagnostic mammo. SO hoping the radiologist talks to me because the ordering doctor has absolutely NO idea what is really going on. I'm not even sure he knows that I'm a patient at the Mayo clinic! I was only able to talk to the nurse when I asked for it to be ordered!

I also put in a message to my Mayo oncologist telling her what I suspect is the case....that this thing has gone invasive. Hopefully she will act quickly.

I HATE waiting!

[VDC]

Wow, I got a reply from my Mayo onc. and on Sunday too! I"m impressed. She is going to talk to the surgeon to find out what is needed prior to scheduling surgery and get these things moving! At least I will be moving in the right direction. If the clinical trial happens to get their act together and let me know on Monday I could still work with that but unless they notify me soon, I"m just going to Mayo and getting this thing done!

[Carol Ann]

Great!! That is wonderful. It sounds like the onc at Mayo is stepping up, hope you get lots resolved and moving tomorrow!

Carol Ann

[jaykay]

Make sure the results of the mammogram go to the Mayo oncologist, too. Glad your onc is moving quickly

Janis

[SoCalGal]

Haven't followed this thread closely, just want to mention that surgery offers a very high cure rate. I know the vaccine makes perfect sense, I feel so, too, but the info available puts odds in our favor of a surgical cure over the vaccine. Best wishes on getting definitive info asap.

[VDC]

I agree surgery is the logical thing to do! I actually want it ALL. I want the vaccine AND I want surgery at the end of 6 weeks vaccine treatment. I believe this would decrease the chances of recurrence. I don't know if I would follow with radiation or not. Still deciding. My onc at Mayo said to go ahead and get the diagnostic mammo on Thursday and then immediately have the images and the radiologist report sent to Mayo for the Mayo folks to evaluate. Makes sense to me as well. My onc. there is working on setting up surgery dates and tests that need to be run prior to surgery. Up until surgery I do have the chance to join the clinical trial should it "get moving" and they notify me. And if they don't, then I have surgery scheduled. This is the plan that is currently being scheduled. Seems like a reasonable plan to me!

[Carol Ann]

Sounds like you are getting a solid plan in place! Thanks for the update. :) Thanks too for participating in the vaccine trial. Hoping someday soon a vaccine is available for all of us!

Carol Ann

[VDC]

I fly out to Mayo tomorrow morning at 5:40 am! Friday will be testing....diagnostic mammo and ultrasound. Monday will be appointments with my assigned oncologist, the medical oncologist and the surgeon. We will fly back home on Tuesday. I should know more after this weekend. At least things are moving forward.

I also received a phone call from the clinical trial but I missed it and she asked for me to call back. I will attempt to do so during my layover tomorrow. Very much wondering what she has to say....yea or nae?

[VDC]

Had diagnostic mammo on Friday and didn't see any new calcifications. The ultrasound had been cancelled as "unnecessary" but I put up a fuss and demanded one be done. Under the ultrasound found two lesions one of which is "concerning" and am now scheduled for TWO ultrasound guided biopsies on Monday. The "concerning" lesion is in a different place in the breast. Need less to say I'm a little stressed, especially since when I had the first stereotactic biopsy back in October, I developed a HUGE hematoma measuring 3.5 in x 1.5 in x 1.5 inches. That sucker hurt!

So, I'm not only worried about the likelyhood of invasive cancer in a different portion of my breast but I am also concerned about the biopsy itself.

The most concerning (and stressful) part of this is that I have constant pain from the previous biopsies. I mean constant and I take ibuprofen three times a day just to deal with it (yes I know not to take it before biopsy). I really thought the pain was invasive cancer, but the mammo and ultrasound says otherwise. The pain is not located in the area of the lesions and I was told that the pain must be as a result of the previous biopsies. I do have a history of pain after insults to my body! When I had my hysterectomy I developed a "rare but known" reaction and I have constant pain as a result....even these 7 years later. Isn't this just great? Imagine what a mastectomy would do to my pain level? Really afraid of the pain. I'm actually not as afraid of the cancer as I am of the pain!

[Carol Ann]

I don't blame you one bit! :( And I bet they didn't offer any apologies after the ultrasound found what it did, for putting even more stress on you by your having to insist.

Pain is #1 on my fear list too.

I am so sorry you are going through this; I wish I had some suggestions for a pain solution for you.

Carol Ann

[VDC]

Ahhh, the plot thickens! My oncologist informed me that the calcification that were present in August, September, October, and November have all but disappeared. I asked what that meant, and she didn't know. I asked for another biopsy since we don't know what is going on in there and she refused. I then requested an MRI of BOTH breasts since the last two lesions were not found by mammography but instead by the ultrasound. I WAS granted the MRI and it should take place either tomorrow or Thursday. My research seems to indicate that in the case of HIGH grade DCIS MRI is 84% accurate in estimating the extent of DCIS. That sounds like good correlation to me. ...and since my DCIS is high grade I am hopeful that it will indicate what is going on in that breast that has the "disappearing calcifications."

The ultrasoundist (is that a word?) who performed the ultrasound guided biopsies thought that my two "areas of concern" looked benign but we won't really know until pathology comes back. From the ultrasound it looked like all lymph nodes were clear.

SO, where does that leave me? What if the two latest biopsies come back as benign and the MRI doesn't 'see' any DCIS? THEN what do I do? I've had two stereotactic biopsies that clearly indicated ER-, PR- HER2 positive DCIS, but how will that surgeon know what to remove if there aren't any calcifications and the MRI doesn't show the extent of DCIS?

...and in the back of my mind is the realization that no one really knows what happens in DCIS. There has never been a "watch and see" trial to see which DCIS go invasive and which don't. Nor have there been studies to see if DCIS ever goes away on its own. While it seems highly unlikely, it does make the mind wonder.

I know, I know....wait until all the results come back. But I can't help my mind wandering down every path.

I am relieved that what I expected seems not to be true. The intense pain and under arm pain as well as the thickening I had felt in my breast seem to be as a result of the two biopsies from October and November. I had expected fairly advanced invasive cancer. I am thankful for what seems to be. (I'm still holding my breath) but those questions keep running round and round my head!

[Carol Ann]

I am relieved for you, too! I hope the MRI gives you the answers you need to keep your mind from wandering down every path.

In the meantime, YAY that invasive cancer doesn't appear to be the answer!

Carol Ann

[VDC]

Pathology of the two biopsies on Monday both came back as benign! I'm actually in shock. Not what I expected at all. Now I just have to deal with the original diagnosis.

I requested an MRI of BOTH breasts since the two new lesions were not discovered by mammography. And, even though they turned out to be benign I decided we really should check out the healthy breast! My doctor didn't think it was necessary and wasn't keen on the idea.

I prevailed when I did my research and explained that for HIGH GRADE DCIS, MRI is 84% accurate in estimating the extent of DCIS. Low grade sometimes doesn't even show up on MRI, but high grade usually does. It made sense to me to not only check on my healthy girl, but to get as much information on the DCIS as possible. Particularly since surgery is "blind" and they can't always "see" the cancer to know what to remove. Mammography historically underestimates the size of DCIS so most surgeons will take a bunch more than the mammogram indicates. BUT they don't know how much to take. It is a guess really. MRI can with 84% accuracy tell the extent of HIGH grade DCIS.

After my explanation she agreed to order an MRI. I had the impression that this was new to her. I think she thought that MRI wasn't a good way to investigate DCIS and that is true for low grade. BUT if you already know it is high grade, MRI is an excellent way to evaluate prior to surgery.

I have an MRI scheduled for tomorrow afternoon! And I meet with the surgeon tomorrow morning. Yes, meeting with the surgeon before the MRI, but that was just the way the vacant appointments were. She can always call me after the results of the MRI come in.

I have a surgery date of February 23, unless I decide to pursue another clinical trial. This one is a vaccine as well, but it is only for people who have a blood type of HLA-A2. I have requested that my blood be tested for this marker. If it is negative, then surgery goes on as planned, but if it is positive, then I have a choice to make......

[Carol Ann]

YAY for benign!!

Carol Ann

[VDC]

Met with the surgeon this morning and discovered that an MRI won't tell us a thing about the DCIS until the biopsies from Monday have healed. And, I also had blood drawn this morning to determine the HLA-A2 type. This blood test won't be back for two weeks (outside lab required). SO, I decided to move the surgery to March 18th to give time for the blood work to be back AND to give time for the biopsies to heal before doing an MRI. My doctor seemed comfortable with the delay since the DCIS doesn't appear to have changed since September. I know I am courting danger by waiting, but I would also like to be involved in this clinical trial if I qualify. ....and I would like the MRI to be able to show the extent of disease before heading into surgery!

I'm holding my breath. Hoping I'm doing the right thing. It is a calculated risk, but it seems like a reasonable one.

My flight leaves tomorrow to take me back home! SO ready to back home with my kids and husband!

[Carol Ann]

It sounds reasonable to me ... I am keeping my fingers crossed that you can participate in the clinical trial! What is the HLA-A2 type test used for?

Have a good, uneventful flight back home to your family!

Carol Ann

[VDC]

Carol,
The HLA-A2 is a blood marker much like A, B, and O except it is usually used in transplant patients to determine if the organ will be accepted or rejected. This clinical trial uses the HLA-A2 instead of the Dendritic cells that were to be used in the first trial I applied to. Basically these markers are used to send "cancer signals" to the body's own immune system so that it can recognize and fight cancer...and in particular HER + cancer.

From what I have read, it sounds like the original trials were successful and there is now a phase 3 trial for those with further advanced cancer. The particular trial I am applying for is a phase two trial because it is for DCIS rather than the invasive cancer that is in phase three trials right now.

The trial opens March 1st, but I have been in contact with the lead investigator out of Texas who advised me to go ahead with the HLA-A2 testing (if I could afford it) now so that we would be "good to go" on the first if I have the HLA-A2 tissue type. If I waited until March 1st for testing, the trial would pay for the testing, but it would then mean a further delay waiting for results. .....and I've already waited 6 months since this DCIS was first discovered. Waiting isn't something that I want to do if it can be helped!

Here is the link to the "gov" site for this trial:
https://clinicaltrials.gov/ct2/show/NCT02636582?term=breast+cancer+vaccine&rank=69


The down side is that it IS blinded meaning that 50% of applicants will receive the placebo. Bummer.

[Carol Ann]

Thanks for explaining this! And doing what you can to be part of the trial!

Carol Ann

[VDC]

Just a quick update. I've been MIA since February. I had the HLA-A2 blood typing done and the results came back the end of February, I was positive meaning I qualified for the trial out of Texas. It was scheduled to begin March 1st but IRB approval kept getting delayed. Every two weeks or so, I was told that it would be about two weeks! Finally the lead investigator sent one of my emails to the IRB board members! One responded with "two weeks." Actually made me chuckle. .....that was two weeks ago! So, I have now waited three months to join this trial.......... shesh.

I have an appointment scheduled at Mayo for May 9th. I fly out on May 8th.....I didn't realize that May 8th was Mother's day when I made the airline reservations. What a way to spend Mother's day!

I will admit that I'm a little nervous. It will have been three months since my last evaluation at Mayo. At that time there was no change evident from the November evaluations. (six months with no change.) But here I am three months later and who knows?

Unfortunately I'm making the trip alone this time. It is the middle of farming season so my husband can't go with me. I'm a little bummed. Okay, I'll admit it, I'm melancholy.

Sure hope we don't find any progression......

[VDC]

I am extremely hesitant to post this and in fact, have been debating it for a week. I've been waiting for the clinical trial that I applied to, to start! It keeps being delayed waiting for IRB approval. Since three months had passed since I was mecially evaluated, I chose to get a thorough evaluation done again. My oncologist said there was "no change" which I thought was fantastic! ....until I read her report (I always read my medical file) and discovered that in fact, my cancer has shrunk. Yes, that is correct, it has shrunk in size and I haven't had any treatment yet. At first I thought that perhaps the size change was so small that she didn't see the point in commenting about it being smaller, but when I compared the measurements, I discovered that it is 30% smaller in volume. That seems very significant to me. I am disturbed that my doctor didn't see the need to tell me that my cancer has shrunk and instead told me there was "no change." I feel a little manipulated.

I have been wracking my brain trying to figure out WHY she would have told me there was no change when her own dictation says there is and the radiologist report also says there is. The reports are in agreement and both clearly express that the cancer is now smaller than when first diagnosed.

I've also been trying to figure out why this cancer of mine has shrunk. Is it something I am doing? I am on a ton of supplements, all of which I have researched extensively and am wondering if by chance they might be the cause. I don't know, but I can't think of any reason why this cancer would shrink. But it most certainly has.

My variety of cancer happens to be ER-, PR-, HER2 3+, KI-67 of 30% (I think). This kind of cancer should NOT shrink. It is usually aggressive. But, here I am NINE months after diagnosis and it has regressed without formal treatment.

I am puzzled on several levels. Any thoughts?
Thanks

[Carol Ann]

Ok ... I am as confused as you are, bottom line I would ask that onc to explain her notes versus what she has told you!! I would feel manipulated too. Plus ask her how/why it regressed!!

Thanks for posting, please don't feel you can't tell us what's going on, I say YAY!! and let's hear the rest of the story now!!

Carol Ann

[VDC]

Thanks Carol! I hesitate to share because my story is so small and simple compared to what many of you are facing. It doesn't compare and seems so petty of me when I think of the long road many of you have traveled.

While I love my oncologist, she does have her mind set at times and does try to "persuade" by her choice of words. For example, when I first came to her, she was my second opinion and I demanded a second biopsy. She wanted me to go straight to surgery without a second biopsy. When I said I wouldn't have surgery without a new biopsy first, she said she was ordering an "excisional biopsy" for me. Since I was relatively well informed I asked how that differed from surgery! She sat for a moment just looking at me and then said she would order a stereotactic biopsy. Yup, this isn't the first time she has tried to manipulate me by her choice of words.

Knowing that, I'm not sure I would get an honest answer if I asked her why she said there was "no change" when in fact there was. I stay with her though, because she is an excellent clinician well respected in her field. There is no one else I would want doing a clinical exam for me. And while I need to sift through what she says to me, her clinical notes are always accurate and complete.

What I have learned over the last 9 months, is to read read read. Read my medical chart, read my radiology slides myself, read the medical journal articles out there, etc.

My best guess is that she is afraid that I will delay surgery or treatment if I know that the cancer has shrunk. She was VERY unhappy with me when I told her that I wasn't going to do anything until one of two things happened. Either there was clear progression of disease OR MD Anderson Cancer Center was granted IRB approval for the clinical trial. I basically told her it was MY decision and MY risk to take. She then had to tell me the results of the tests I had had earlier in the day. That was when she told me that there had been no change.

That still doesn't answer the question why though. Why has it shrunk? I would like to try to find an answer to that question because whatever it is that I'm doing......I want to keep it up!

[Carol Ann]

Please don't feel that way! You are not being petty at all! It ALL sucks!! And what you are discovering through all your research and interactions with your onc ... may just help someone else who comes here looking for info. Plus you deserve support too (see above re: suckitude of all of this. :))

Don't let her off the hook. She works for you, not the other way around. You deserve answers, you are the one who has to deal with all the consequences of every decision made, not her.

Carol Ann

[Carol Ann]

Also ... what supplements are you taking? :)

Carol Ann

[donocco]

VDC

Medicine has changed since insurance controls it. Not much we can do about that.
Maybe it was the supplements that produced the shrinkage. Let me suggest two
things that might have anti-metastatic action- Tagamet (Cimetidine) and Berberine.
Speak with your oncologist if its ok to take these

Paul

[VDC]

Carol,
Oops missed your second question! For some reason I am not receiving the emails that tell me when someone has posted a reply! So, as for supplements that I am taking....


It is a smorgasbord!

Co Q 10 (200 mg morning, 200 mg evening)
5000 Vit D (morning)
Flaxseed oil (1000 mg daily)
Green tea extract (500-600 three times a day)
Curcumin (2500 three times a day)
Aloe Vera
Berberine
Cinnamon
Evening Primrose oil
Cranberry Extract
Grape seed extract
Rosemary
Aspirin
IP6 and Inositol
Trans Resveratrol
Quercetin
Flaxseed Lignan
Indole-3-Carbinol
Spirulina
Niacin
1 oz pecans daily

And I take:
Levothyroxin
Atorvastatin
Cyclobenzaprine
Estrogen/Progesterone (I know........)

Some of these are NOT indicated for hormone sensitive cancers! Mine is ER-, PR- Her2+ so the hormone thing isn't as important. One supplement that could make hormone sensitive cancer worse is the Trans Resveratrol. But for we "negative" gals I think the research is more in favor of it.

If you want to know the dosages of these I can look them up, I just can't remember off the top of my head while I am sitting here typing!

Some of these I chose specifically because they seem to be indicated for reducing Her2 neu activation which is a good thing for HER2+ gals.

[VDC]

Paul, Ah, yes ask my oncologist. I keep her well informed and wouldn't think of taking anything without her knowing. But......as for the asking part? Not so much. Unless she can provide me with research indicating why I shouldn't take it........I consider it my choice and usually I have research supporting my decision to take them. Most of the time I have more information than she does when it comes to supplements.

[Carol Ann]

Thanks for posting your list!

Carol Ann

[VDC]

Carol Ann,
I just refilled all my supplements and made a masterlist of what I take, when I take them, and the dosages! So, here is a more complete list!

Breakfast:
2 tablespoons ground flaxseed (I detest flaxseed)
Indole-3-Carbinol 200 mg
CoQ10 400 mg
Curcumin 2,320
Berberine Plus: 500 mg Berberin, 60 mg Vit C, 15 mg Zinc
Flaxseed oil 1000 mg
Cinnamon (Ceylon) 1000 mg
Evening Primrose oil 1,300 mg
Rosemary 275 mg
Cranberry extract 12,500 mg
Green Tea Extract 500-600 mg
Aloe Vera Gels 100 mg
Vit D 5000 units
Aspirin 325 mg
IP-6 & Inositol: IP-6 800 mg, Inositol 220 mg, Calcium 130 mg, phosphorus 190 mg,
magnesium 40 mg
Trans Resveratrol 500 mg
Quercetin 500 mg
Spirulina 3000 mg

Levothyroxin (prescription for thyroid)


Lunch
IP-6 & Inositol: IP-6 800 mg, Inositol 220 mg, Calcium 130 mg, phosphorus 190 mg,
magnesium 40 mg
Berberine Plus: 500 mg Berberin, 60 mg Vit C, 15 mg Zinc
Flaxseed lignans 51 mg lignans
Curcumin 2,320 mg
Rosemary 275 mg
Cinnamon (Ceylon) 1000 mg
Green tea extract 500-600 mg
Grape seed extract 400 mg


Snack
1 oz pecans (I hate pecans)


Dinner
Curcumin 2,320 mg
Berberine Plus: 500 mg Berberin, 60 mg Vit C, 15 mg Zinc
Cinnamon (Ceylong) 1000 mg
Green tea extract 500-600 mg


Bed time
Aloe vera gels 100 mg
Evening Primrose oil 1,300 mg
Cranberry extract 12,500 mg
Grape seed extract 400 mg
Melatonin 20 mg
Niacin 500 mg (timed release)
Aspirin 325 mg
Cyclobenzaprine (prescription)
Atovastatine (prescription)

I THINK this is complete! Most of these, although not all, are relatively high dosages.

[Carol Ann]

Thanks!

Carol Ann

[VDC]

Carol Ann,
You are more than welcome Any time!

[norkdo]

Hi VDC! You are a wonderful writer, and obviously highly intelligent and informed. I enjoyed reading your journey, and felt great sympathy for you as I recall all the stress and terror of being diagnosed, etc.
I was stage 3b on diagnosis, did the cure for the next year and a half, including a failed reconstruction, and have been clear of cancer for five years. I want to ask you to reread the wonderful responses you've received on this thread, and kind of read between the lines if you can. I am in awe of the good advice I see on all these pages.
I say this because I hadn't been on this site in many months, and the first thing I check on is (no, no this isn't scare tactics, just my experience) the survival of some really good women I recall helping me over the past five yrs that I've checked in here, and esp those from that first year or two.
When I read about another death of a super smart lady with HER2 positive cancer who has been on the boards helping others, I keep saying "why? why? she was so young! why?" etc. This unknowing is what I want to give to you.
Women with exactly the same diagnosis that I had, and who found out they had cancer around the same time that I did, are no longer here. Pause for effect. I scratch my head, I reread every word on everone's signature information, and I still don't know why I am here, a chronic smoker who eats McDonald's a lot. A lack of knowledge is never good, but also it seems to have zero effect on survival. I knew less than my friends who died, for example.
Please don't think I advocate ignorance. I just keep in front of me a deep respect for our collective lack of certain knowledge about exactly how and exactly when cancer cells travel to the brain, bones, lungs, and liver. This unknowing "must give us pause." Certainty itself can be a trap or it may be a way of putting a sense of control on the uncontrollable; a healthy and common response to terror. With only a fifty percent chance the Medical Trial you want will select you for the real medicine, and the fact the other fifty percent of women may die for the cause of future survival for women as yet undiagnosed, you need to consider choosing to undergo the old-fashioned slash/poison/burn treatment that has improved, I understand, in the five yrs since I had it, and I am alive/NED.
I was a total whiny, complaining, pain in the butt to nurses and radiation techs, but I have to say I was a willing and happy pincushion for my medical oncologist and my radiation oncologist (although I stretched out the rads, with my fears winning over my duty to myself to comply on consecutive days to the point my radiation oncologist had to remind me that the studies for my future survival were only done on patients who did the rads on consecutive days, unlike the postponing that I did between sessions.)
My sister in law was diagnosed with eye cancer and the onc prescribed immediate removal of the eyeball. She refused and instead went to the UK and had a new kind of more choosy procedure that looked to be the way forward, in lieu of the glass eye. She was a young woman in her early 40's and she is dead now. In the months she was turning down the slash/poison/burn method I found it harder and harder to stay positive and even to talk with her about her enthusiasm for the supplements she hoped would prolong her life, etc.
The reason I asked you to reread some of the responses on this thread as if you were reading through the lines, is that I feel some of them do convey the respect for the traditional timeline, etc. and I may be reading into them but I think some of the writers were urging sort of what I am trying to do here, but without risking being the dickhead I have exposed myself to be. I'm just saying please please please ask yourself if completely surrendering to the Medical Oncologist, despite your misgivings, might not just be the right thing to do, instead of throwing up roadblocks to her? Only saying it because my late sister-in-law might have had a way better chance of being alive right now had she done so.
There is a psychological reason behind all our decisions and for me, immediately after diagnosis, anxiety and terror were pretty well out there dancing on every thought my brain had. The steroids made me angrier, the worry about pain and nausea were way worse than the actual pain and nausea of all the treatments. It was hard to just ask the oncs "gimme the stats if I don't take this course of action and then gimme the stats if I do" and then to take a big breath and submit/surrender to stats, but I did. I'm glad I did; it worked for me.
I say this because the shrinkage of certain tumours may not necessarily be good news, if, say, the food and blood supply to them had relocated to other lymph nodes or the brain, bones, lungs and liver. Perhaps the energy provided previously to those breast tumours is now being used to install new tumours somewhere else? Just because breast tumours shrink, there is absolutely no science that says, at this point in what we all collectively know, that the cancer is not working on a plan to metastasize.

[VDC]

Norkdo,
THANK YOU for the candid and obviously caring response! Let me say that I agree with everything you have said and the things that others have said as well. That may sound contradictory given the things I have posted, but it is not.

In fact that is why I "ran the other way" from the clinical study that is "watchful surveillance." Yes, there truly is a medical FDA approved study for women with DCIS...and the study is to "do nothing and see how many progress." The craziness of it was beyond my understanding.

I am a scientist by trade, by background, by training, and by personality! It is not only what I do, it is who I am to the core of what makes me "tick." I have done research on myself, my HoFH son, and my husband (when he lets me.) Being true to myself is to throw my cancer into a clinical trial. Anything else, and I would live with a lifetime of regrets....and I'm not talking a little regret. It would be a betrayal of who and what I am. My family has supported my desire because they understand that anything less would be to deny who I am.

Do I understand the risks? Yes. My aunt died of metastatic breast cancer. My mother died from treatment for Hodgkin lymphoma. My dear friend passed away from ovarian cancer. I have seen it first hand. I have seen how it devastates not only the individual who has it, but also their families and friends. And I live with the hole left by these people who were an intricate part of my life. I do understand.

I'm not scared, or running. I've met this one head on. In February, my oncologist sent me to a psychologist because she thought I was just too calm about my cancer! It made me chuckle but I went! After an hour, the psychologist told me that I was one of the most well adjusted individuals she has met and that I have superior coping techniques. I never saw THAT coming. But my oncologist hasn't mentioned it again...and that was when she stopped trying to twist my arm on this. I do know what I am doing. It isn't denial. It isn't fear. It isn't naivete.

And you are right. Cancer is an unpredictable foe. There is no way to predict the future, or what path this cancer may take. That is just the point. There is no way to know. We do the best we can with the information given us by tests, by imaging, by biopsies, by the technology that currently exists and even then, it is unpredictable. We can look at statistics, and confidence intervals and standard deviations. But even then there are outliers...those data points that just don't fit the data.

I agree with everything you have shared, and I SO appreciate your heart! I could hear your caring through the written words. And you have spoken well

I as a scientist need to be true to myself as well. And because this cancer journey IS so uncertain, the path is not always the same. Don't worry I chose not to join the "wait and watch" clinical trial for a reason! I don't intend to wait forever.

Truly thank you for your heart caring message.

[VDC]

p.s. you might check out the other post about Trans Resveratrol. That is more of my story! The research side of me coming out as it always does!

[norkdo]

VDC: Thank you so much for seeing through the words to the soul of what I and others want to do...to preserve the life of a smart, valuable woman! My personal journey was so much a mental game I couldn't believe how weak I was, despite knowing deeply what a coward I have always been, a non-risk-taker. I feel your sisterhood deeply in this. We are not mice in a scientific study, we are equal to men, we are educated, we are allowed choices, or at least to ask and inquire for them. I will be following your posts very closely and your courage is way above and beyond many of us. I always said "I'm not a good candidate for advanced breast cancer due to my babyness, my lack of courage." Funny, though, after going through it all, I might have gained a bit of courage through just going through it.

[VDC]

Norkdo,
You sound So much like myself 16 years ago when our then 7 year old son was diagnosed with Homozygous familial hypercholesterolemia and we were told most likely he would not live to see his 20th birthday. I had no idea how very very weak I was until that moment, when my entire world shattered. I lived the next two years watching him grow through tears, each birthday was devastating knowing that it brought us one step closer to the moment when he would no longer be with us. As I watched him play I would turn away and cry. Some nights I would just sit in his room and listen to him breath....wanting to etch the sound into my mind so I would never forget it. After about two years though, I realized that I was missing the joy of this moment. At THIS moment, he was here. At THIS moment he was laughing. At THIS moment he was saying "I love you." And, I was missing it because I was viewing it through the future....which of course was predicted, but no one truly knows the future.

At that moment I made a choice to live in THIS moment. AND to fight for the future. I took time to sit in the floor and build lego's......and laugh. I stopped cleaning house (after all it was just going to get dirty again right?) I started researching his disorder until I became an expert who knew more about it than most of his doctors. I did research on my own that stood outside of conventional medicine. I went back to school and entered graduate school in Organic/biochemistry and studied "Bile acid sequesterants" (a drug for familial hypercholesterolemia). I learned. I fought. And I laughed with our son.

One thing I learned was to listen to the whispers of God. I know not all of you will understand or believe this, but God IS whispering direction and I strained to listen. And I learned to hear. We went against medical advice and refused to do LDL apheresis with our son because we believed God directed otherwise. It was frightening. We wondered if we were doing the right thing. It took until the age of 17, but at 17 his doctor shook his head and admitted that we had made the right choice.

In the process I learned to live in this moment. I learned to never give up! I learned to research! (which came natural to my personality anyway) I learned to listen to God's prompting. And I learned just how much I had been missing out on even before his diagnosis because I was living by "chance" rather than by "purpose." We began to parent by purpose rather than chance. And it revolutionized our lives. THIS moment is precious regardless of the outcome! We have continued to live with "purpose"

Today I helped my TWENTY THREE year old son fill out job applications. He graduated last month with a degree in Computer Engineering. He has no heart disease (this is what kills people with Homozygous familial hypercholesterolemia), and his LDL cholesterol is normal on a combination of 6 medications and 4 supplements. He is healthy even without the LDL apheresis that had been pushed on us, but which we refused. God had been right as I suppose he always is. ....although I often forget that when I'm in the midst of a "life challenge."

And here I am, leaning in, straining to hear the whispers of God's voice leading me where I should go in this current "life challenge." But regardless of the outcome, I know this......THIS moment is sacred! THIS moment is treasured. THIS moment is full of joy!

Does that make me strong? No. I just means I have come to the place where I fight for the future, but without leaving the present. I have come to the place where I am reluctant to take one step without God's whisper leading me there. I don't think that makes me strong, although it does bring joy to today! And really, none of us knows if we really have tomorrow. I could cross the street to get the mail and be hit and die.

I suppose in the battle of the mind.....I HAVE won. Not that I am successful in every moment. I have my moments like everyone else, I just don't stay there. I am living for the moment, and I am loving every single minute of it!

Living in the moment doesn't mean that I don't consider the future. It is why I study and learn and try. Of course my personality would find it hard to do anything else ;-) So research I will! Clinical trials I will join. And I will laugh! Life is much too short to spend it doing anything else but laughing!

[VDC]

Ah, the fun continues! I'm scheduled for an MRI next week....at MY request. Finally, got the okay from my oncologist. She had been dragging her feet since she really didn't see the need for DCIS.

What made me chuckle was when I requested it this time, she said it was a "good idea" since it is a good indicator of extent of disease for high grade DCIS. I think she forgot that I was the one that told her this back in February when she insisted that MRI was not good at detecting DCIS and was pointless for that purpose. I had sent her the research showing that it is 84% accurate in determining extent of disease in HIGH grade DCIS. Funny....she remembered the research I sent her, but not who sent it!

Regardless, I was granted my request. Flying out tomorrow!

[Carol Ann]

Fingers crossed, keep us posted!

Carol Ann

[VDC]

The plot thickens! This is going to get VERY interesting very fast I suspect!

That MRI that "I" requested and demanded? WELL.....how about five more biopsies scheduled for me this week? Yes, that is correct, five more biopsies as a result of that unnecessary MRI. Two are in the OTHER breast! Of those two one is suspected to be just a papilloma. But the other? Only the biopsy will tell. It's just a little bugger 6 mm by 4 mm, but if that happens to be invasive cancer we will have discovered because I DEMANDED an MRI!

And the other THREE biopsies? Those would be in the breast with known DCIS. One, is the original DCIS site which because I declined a clip at the time of the biopsy they now want to biopsy again...that is fine with me. The second in that breast is probably the pappiloma that was biopsied in March...but I declined a clip with that one as well, so they want to make sure it really IS the pappiloma. And now for the grand finale! The fifth biopsy? That would be in a mass that is "highly suggested of malignancy." AND NOT near the DCIS. Do you realize that if they had done the lumpectomy that was recommended before, THIS mass would have been missed? It does NOT show up on mammogram and didn't show up on the ultrasound either. If surgery had been performed earlier THIS mass would have been left behind!

I feel SO grateful that I demanded an MRI! Of course we could all be surprised and they could come back as benign, but really.....with my history? I doubt it!

I flew back yesterday with my father who had the ablation and needed me to fly with him to carry all his things...and tomorrow I will fly back to Mayo for all these biopsies! How fun.......??? This frequent flier is very tired of that designation!

[Carol Ann]

Oh I am sorry yet glad all at once ... sorry this is getting so much more complicated, but glad you insisted on the MRI and now they are finding what they need to find.

See my signature ... NONE of my diagnostics, including an MRI, ever found ANYTHING. if it hadn't been for the Paget's disease I had, with a bloody nipple, and an insistent surgeon, AND the double mastectomy I insisted on against all the pushback against it, my life would not be the same right now.

Keep us posted, and keeping fingers crossed for you!!

Carol Ann

[jaykay]

I'm sorry, too! Were they able to compare the MRI images with previous mammograms to see if there was a "hint" of your other suspicious spots? And yes, I know that MRI's and mammograms "look" different.

I can't remember if your first biopsy had a KI67 result or not.

I know this sucks big time. Please keep us posted

Best
Janis

[VDC]

KayJay, yes, I had a KI-67 done (at my insistance) back in November and it was either 20 or 30%. KI-67 is usually NOT done for DCIS so it had to insist on it, to have it processed and determined. THe same went for the HER2 testing. It is not usually done for DCIS so I insisted on that as well. I don't remember off hand whattheKI-67 was but I do know it was either 20% or 30%....and whichever it was it was right on the cut off between the two degrees of KI-67. . I would have to go look it up, and I'm in Rochester at the moment not at home where all my records are! Tomorrow is my "lucky" day of biopsies....all five of them. I'm going to be a regular pincushion!

[VDC]

As far as I know there was no hint on the mammograms OR the ultrasounds that I have had. Of course the contralateral breast never had more than the initial mammogram, but the ipsilateral breast has had a TON of mammograms and multiple ultrasounds, none of which seemed to indicate any other "areas of concern." Nope, this is the first hint of anything further amiss! Okay, so it is more than a hint!

[VDC]

Darn it! Wouldn't you know that Mayo only schedules their MRI guided biopsies on Tuesdays? And by the time I had my "second look" ultrasound and the results of that were back, it was too late to schedule for today!

That means I will be flying home tomorrow only to return next Monday for Tuesday biopsies. ....this frequent flier thing is getting out of control!

Now for the "curious" part of today. That "second look" ultrasound took THREE hours to complete as TWO radiologists and my oncologist discussed each image and throughout the three hours they kept demanding MORE images. The technician and I were dumbfounded as more and more images were requested spanning THREE entire hours! The technician kept apologizing for the delay! ..and I kept assuring her it wasn't her fault!

The results of the ultrasound were as follows:
1. The enlarged lymph node was no longer enlarged (I was catching a cold when the MRI was done and that was most likely the cause of the enlarged lymph node) (good news)

2. Two of the "indeterminate" areas are ONLY visible by MRI and not by ultrasound or mammography so these will require MRI guided biopsies which will be performed next Tuesday. One is thought to be the DCIS that used to be visualized by mammography and was biopsied back in October and found to be DCIS. The other is thought to be greater extent of DCIS than previously thought, although only biopsy will tell. All told this length of DCIS is about 6 cm which is quite extensive considering the mammography thought it was 2.7 cm in October....but some couldn't be seen by mammography? (indeterminate at this time)

3. The 2.2 cm mass was the remains of the hematoma and it was previously biopsied in February and was confirmed to be remains of the hematoma. (good news here)

4. The contralateral breast has two masses that do show up on ultrasound and these will undergo ultrasound guided biopsies on Tuesday. (indeterminate at this time)

5. The "little" 4 x 5 mm mass was biopsied in February and found to be a papilloma. (good news here)

6. There is a little 5 mm mass that onlyl shows up by MRI and will need to be biopsied by an MRI guided biopsy. Add this to the list of biopsies for next Tuesday! (indeterminate at this time)

So, in all, it was a good news day with some indeterminate masses yet to be biopsied. Could have been worse..........

[Carol Ann]

Sorry you have to fly back again, ugh that is so hard! But glad there is some good news, too!

Carol Ann

[VDC]

I had my 20 year old daughter with me this trip! It was actually a very special time with her! We called it our Mother/Daughter bonding trip. I wouldn't have traded it for the world!

[Carol Ann]

Great!!

Carol Ann

[Lien]

What a journey! Any results yet? It's all very intriguing.

[VDC]

Thanks for asking! I am sitting in the hotel lobby waiting a few hours for my shuttle to take me to the airport and back home!

I was scheduled for THREE MRI guided biopsies for yesterday. I ended up having two because the third lesion disappeared and was no longer visible. We had thought that the posterior lesion was the one visualized by mammography and biopsied back in October. This has proved NOT to be the case. It is an entirely new lesion. There is no news yet on either biopsy pathology. The pathology report should be back by Friday...or so I am told.

What this means is that I have the original biopsy proven area of DCIS, AND these two new lesions that may or may not be more DCIS. They LOOK like DCIS on MRI but are not visible by mammography or ultrasound...which is common with high grade DCIS.

What is strange is that the original lesion is NOT visible on MRI. 98% of high grade DCIS IS visible with MRI and in fact MRI is highly effective at determining extent of disease for high grade DCIS. So, either this original lesion (which was biopsy proven high grade) is part of that 2% that cannot be seen with MRI or the morphology of the lesion has changed...which also happens. Although usually they don't change from high grade to low grade so this is a bit of a puzzle.

Today I had two ultrasound guided biopsies scheduled for the OTHER breast! I ultimately had one biopsy. The first site was injected with lidocaine and the lesion disappeared! The doctor said that when a lesion disappears with the addition of lidocaine he is no longer worried about the lesion because that usually means it is benign. The second lesion was biopsied and the results will be available probably on Monday. He said the ultrasound was indicative of a fibroadema but that until biopsy results came back we wouldn't know for sure.

So, all in all three biopsies rather than five. And of the three, two look like greater extent of DCIS while the third is most likely benign.

Yup, I'm sitting here with TWO VERY sore breasts! (I'm not complaining, just an observation!)

I am flying out tonight and I'm not supposed to lift more than 10 pounds for 24 hours.....yeah right. NOT going to happen! I have a suitcase which definitely weighs more than 10 pounds! I'll try to be careful but I have to have my suitcase with me! (actually a VERY full duffle bag)

I also received word that I start the clinical trial on July 11th! Woo-Hoo! This has been SO long in coming. VERY ready to start this new adventure!

[Carol Ann]

So glad things are moving forward and you have had some good news!

Carol Ann

[VDC]

Updated path report:

What I had been told before was incorrect. One of the two "new" lesions in the left breast, IS the old biopsy site from October. I had been told it was not, and that I now had three lesions in the left breast. However the pathologist said it IS in fact, the old biopsy site because he could see biopsy site changes in the samples. So, it is not surprising that this site does indeed show high grade DCIS.

The second lesion that looked like DCIS, is indeed DCIS. Now it is thought that the first lesion and this second lesion are most likely just additional length of disease....all in all about 6 cm. which in my opinion is a lot! This too, is high grade DCIS.

So, instead of three lesions in the left breast, there are only the two, one of which showed up as calcification in October (and was biopsied at that time. This first lesion also showed up on the MRI. The second lesion only showed up on the MRI and not by mammography or ultrasound.

This is the first MRI I have ever had so there is no way to know if this second, MRI visible only lesion, has shrunk, grown, or stayed the same since October.

Interestingly enough, the first lesion has shrunk by half from October to now. In fact, this is why they had thought this was an entirely new lesion! They simply could not believe that it might have shrunk, therefore it HAD to be new disease. My oncologist did not have an explanation and said she has never seen any shrink. In fact, she began to wonder if it was just differences in imaging between October and now. However, she is known for being manipulative in the way she says things, so I do think it has shrunk...and indeed the pathology report says it has.

The lesion from the right breast turned out benign as expected.

I Guess all of this really is good news. And, while I am usually an upbeat, thankful person, today was a hard day. I think I spent too much time thinking of what is to come.....

On a positive note, I fly to Texas on July 10 to begin the immunotherapy trial on July 11th.

[Carol Ann]

It was a hard day, I am sure, none of this is easy!

But it sounds like you are on the right track and there IS good news as you move forward!

Keep us posted!

Carol Ann

[VDC]

Ah, the biopsy that keeps on giving..... ;-)
Friday I had the surprise of my life! 10 days post MRI guided biopsy I was examining my poor breast in the mirror trying to determine just how large the lump from the biopsy really was....I ALWAYS have inflammation and lots of it from the biopsies. I was looking the current lump over and softly pushing on my breast when my breast EXPLODED! Really! I was stunned and didn't realize exactly what had happened at first. There was blood and blood clots all over the mirror, all over the counter, all over the faucet, all over everything! I just stood there stunned for a moment until I realized that all the blood was old blood and most likely from an undiagnosed hematoma that had just ruptured through my skin. I guess that biopsy created ANOTHER hematoma....shesh.

Since I am known for creating hematoma's they had kept me for over an hour after the biopsy checking on my breast and rechecking. There didn't seem to be any sign of a hematoma growing so I was sent home to the hotel. And for the first week afterwards, there didn't appear to be any lumps forming. But the last three days, there had been that lump.

This was the FIRST time I had allowed a clip to be placed. I have declined ALL the other 6 biopsy times. But I gave in this time. Keep in mind that my body ALWAYS reacts to foreign bodies.....even stitches cause a huge problem. So, I had refused a biopsy clip for six biopsies but gave in on the 7th. And I think my body just rejected that clip! With all the blood and blood clots all over the bathroom, I let me oncologist know what had happened. She wanted to do a mammogram to see if the clip was still there....I wouldn't let her. There is nothing we can do about it if it is or isn't there and it doesn't change anything so why expose my breast to MORE radiation? I tell you, you have to be your own advocate!

Anyway, there is nothing like the surprise of having your breast explode all over the mirror, sink, counter, clothes, everything....especially when you aren't expecting it!

You know? I think next time, I will decline the clip....... ;-)

[Carol Ann]

YIKES!!! I am so sorry this happened to you!

Hopefully there will be no more biopsies and hence clips to decline!

YES, I couldn't agree more with being having to be your own advocate.

See my signature ... I got all kinds of pushback when I said I wanted a double mastectomy ... no need to remove a healthy breast, look at all these stats, no increased chance of survival, yada yada yada ...

And then my HER2+++ tumor was found in the "healthy" breast ... that even the MRI missed and said was "healthy".

No more pushback, gee funny how everyone shut up after that!

Let's hear it for No More Surprises!

Carol Ann

[VDC]

Carol Ann, Thanks....actually I found it funny. I am NOT an alarmist and I just stood there stunned for a few minutes until I figure out exactly what had happened. Then I found it rather humorous!

I suspect there WILL be more biopsies in my future given the clinical trial that I am joining. I have already decided that prior to surgery I want another MRI and biopsy of the second site. This is because in the second site, there was only ONE DCIS which usually isn't even considered cancer. You have to have THREE in the pathology for it to be considered DCIS. With my history, they counted that one as DCIS, but I will want to be very sure before surgery and will demand a second biopsy of that site before surgery. ....especially since I will have had the immunotherapy and NO ONE knows what effect immunotherapy has on DCIS. In the only other trial for immotherapy and DCIS (not the same treatment I am receiving), in 40% of the ER-, PR- HER 2 3+ DCIS there remained NO DCIS at all after SIX weeks of treatment.

So, given the ONE in the second site and the history of immunotherapy in DCIS I will demand a second biopsy of that site prior to surgery. This is the same site that just "exploded" on me!

Isn't this quite the adventure? ;-)

[Carol Ann]

Undoubtedly! :)

CA

[VDC]

Signed my life away yesterday! 24 pages of informed consent, but I am now officially enrolled in this immunotherapy clinical trial! Now if my insurance and MD Anderson could just get on the same page, we would be set to go! I spent 4.5 hours on the phone between the two today trying to get them on the same page. Boy does this get complicated when MD Anderson is "out of network" for my insurance but will pay if part of a clinical trial.....but the paperwork is unimaginable! (not to mention time on the phone)

I'm curious, does anyone have experience with Leukine? This is the second drug given with the vaccine.....looks like it increases white blood cell count? Anyone have experience with it and know what to expect from this half of the cocktail? ;-)

[Becky]

As you can see from my signature, I used Leukine as my white blood cell booster instead of Neulasta during chemo. I chose and fought to do this as Leukine boosts all white cell components, most notably the dendrites. Neulasta boosts the neutrophils primarily which fight infection. I wanted dendrites as they are the scouts who find all abnormalities. Then they code it and prompt the killer T cell production. This assists in either self vaccination (my goal as I was not in a vaccine study) or assists immune response in a vaccine study.

The only thing with Leukine is the first shot, and only the first shot, can make you extremely weak. I was almost incapacitated. It never happened again and I had to have a shot a day for 10 days after every round of chemo. It was scary but again, only the first shot and it is rare side effect. You should be aware though. You may also get a couple of hives near the injection site after time goes on. This is supposedly a good thing. I was happy to get them as it shows an immune resonse which is what you are going for. If you have any other questions, let me know.

[VDC]

Thanks Becky! Yes, they warned me about the hives and perhaps feeling like I had the flu for 4-6 hours.

I find it particularly interesting that my white blood count is below normal......even without any treatment. This is my pretreatment levels. I wonder if my low white blood count could be a piece of why I have this cancer to begin with!

The Leukine is part of trial and given to everyone, both those in the active arm and those in the placebo arm. From my perspective even if I was in the placebo arm boosting my immune system can only be a good thing!

They are enrolling 48 patients, 32 of which will be in the active arm and 16 in the placebo arm. All will receive Leukine and the 32 will receive the vaccine as well.

I was told I am the FIRST to enroll! That would make me nervous except this vaccine has been used in women with later stage cancer and it has been highly effective for those that achieved NED. In fact, 94% remain cancer free after 10 years (I think it was 10 years but dont' hold me to that) Compared to the placebo arm where 78% remained cancer free after 5 years. (yes I think the years of study were different because they followed the active arm longer) But don't hold me to that either. I'm going off of memory here.

So, being the first to enroll doesn't worry me. It does make me wonder if it increases my odds of being in the active arm though? hmm..........only time will tell.

[VDC]

I've had some glitches with my insurance refusing to call MD Anderson 'in network' and of course MD Anderson wouldn't accept me even as a trial participant without "in network" status. This fighting sure does get old sometimes.

Anyway, it looks like most of the glitches are now solved and we can progress to scheduling these injections. Hopefully tomorrow the last paperwork will be agreed by the insurance and MD Anderson.

In the mean time I had an appointment with a naturopathic doctor who did her internship with the cancer center of America. Interesting discussion. And, while I can discredit her on her lipid knowledge, I'm still deciding if she knows something about naturopathic oncology. I'm on the fence and decided that I would adopt the things that I didn't think could hurt me, and reject those that are contrary to accepted medical practice.

SO, has anyone heard of rubbing caster oil and Vit A on the affected breast and then applying heat? Sounds a little wacky to me but I can't really see the harm in it? Thoughts?

[VDC]

I dont' think I've posted since July....mostly because I have been "processing" In July I signed the 24 page informed consent for the clinical trial in immunotherapy at the MD Anderson Cancer center, but my insurance put up a stink and I had to fly back home until they settled the payment issues. The following week the PI notified me that the trial had been put on hold due to another trial that uses the same drug. There had been a glitch in the other trial and until they sorted it out, all trials using that drug were on hold. That was in July. In September I had another MRI and this time for the first time, there was clear indication of disease progression. So, I scheduled surgery for October 5th. And, on October 5th I underwent a very very large lumpectomy. (7.2 cm of DCIS) Fortunately for me, they didn't find any indication of invasive disease. I fully expected there to be an invasive component given the size and the speed at which it had grown from June to September (2.5 cm in three months). But? So unpredictable. My closest margin was 5 mm which was fantastic. Now I am in the process of deciding if I will have radiation therapy and if so, what kind.

[MaineRottweilers]

Glad you checked in. It is a lot to process. I hope the remainder of your treatment goes smoothly and your decisions are clear and easy for you.

[VDC]

I have hesitated to post this because I know that my "bumps" and decisions don't in any way compare to what many of you have and are facing.

However, I changed my mind yesterday because I realized that there may be other's "out there" who are in my boat and are silent for the same reasons I have been silent. (how dare we speak about our petty little problems in contrast to what most of you are facing?)

As some of you may know, protocol treatment for DCIS (her2 + and HER2- both) is surgery followed by radiation treatment. I was good with it until I started asking questions....and then I wasn't so "good with it." Eventually I sent the following message to my radiation oncologist asking if my assessment was correct. He agreed with my entire assessment.

I understand my expected rate of recurrence to be 30% without radiation. IF the rate of recurrence without radiation were 30% then the odds of staying disease free would be 70%.

If radiation therapy were given then the rate of recurrence should be about half or 15%. What this means is that 70% of women would remain disease free with or without radiation and 15% of women would have a recurrence with or without radiation. So, for 85% of women radiation makes no difference at all. Radiation WOULD then make a difference for the remaining 15% of women. My radiation oncologist added that if radiation is given the TIME to recurrence is often longer.



My understanding is that radiation now would mean my only option in the future was mastectomy. However, if radiation were not given now, then lumpectomy and radiation might be possible at the time of recurrence. (although I think YOU said radiation can be given now and later?) Considering that 15% of women would recur even with initial radiation, this is significant to me. Particularly given my position on retaining my breast!
I also asked about the “odds” of long term side effects such as radiation induced fibrosis. There were no odds to be given so I asked about risk factors for heightened fibrosis. Among those given to me were smoking (not a problem for me), autoimmune disorders (not a problem), heightened inflammatory response (THIS IS A PROBLEM for me), and multiple breast surgeries. I then asked if larger lumpectomies might have the same effect as multiple breast surgeries. She thought a large lumpectomy might increase the risk of fibrosis just as multiple breast surgeries do. This is a concern to me as well since my lumpectomy removed over 10 cm of tissue 7.2 cm of which contained DCIS. The radiation oncologist also added that there is a genetic disposition to fibrosis as well but we have no way of determining our risk of developing fibrosis.



There is an increased risk of invasive disease if radiation therapy is not given. (15% versus 7.5%) Certainly invasive cancer changes the entire picture and is not territory that I wish to enter! But are the negatives of radiation worth the 7.5% reduction in invasive cancer? Particularly if I am especially vigilant in follow up and surveillance? These are questions I ask myself and ultimately only I can make that decision.



After discussing all of this with my radiation oncologist I asked about my rates of dying with and without radiation treatment. Oddly enough, my rates of death are the same if I receive radiation treatment and if I don't.



I made the decision to forgo radiation treatment. For 85% of women with high grade negative HER2+ DCIS it makes no difference if they receive radiation treatment. 70% will remain cancer free and 15% will have their cancer come back (half as DCIS and half as invasive) The other 15% are the only women for whom radiation therapy will help. And, I prefer to keep my options open for therapies in the future. ....either way, my chances of dying from this disease are the same. Imagine that?


I asked my radiation oncologist WHY radiation is considered protocol considering these statistics. He said it is because the ONLY thing considered when decided on therapies is the rates of recurrence. Nothing else matters in the protocols. Quality of life doesn't matter. Period. He was in agreement with me deciding to forgo radiation treatment and he would have supported treatment as well. He truly believes either choice is correct.


I then went to another institution and received a second opinion. She was much more insistent on radiation therapy but when I asked my questions and told her what I believed to be the accurate statistics, she agreed that my information was indeed correct! She agreed with ALL the statistics. But she also said that it was her job to promote protocol.


Funny how when I started asking questions, what was once an easy decision became a much harder one. And, ultimately I chose to go against protocol.


Interesting indeed.

[MaineRottweilers]

Glad you came to a comfortable decision. It's not ease for anyone. There is no right choice. Doctors want to throw everything at it so they can say they did all then could. No, little thought is given to cost/benefit. They tell you the risks, feed you the stats but ultimately it has to be your choice, what are you willing to live with. Many live with guilt and self doubt and Heaven forbid it does return, they face scorn from family and medical staff for not having done all they could in the beginning. There's no way to know where you fall within the statistics. Don't you just wish you had a crystal ball?

Whatever you do, do not doubt your choice. You did the research, you asked the questions, you wrestled with yourself. You made a sound, logical decision. Don't let anyone cause you to second guess that. Peace be with you.

[Carol Ann]

What Tracy just said. :)

Carol Ann

[jaykay]

What Carol Ann just said ;-)

[Donna H]

Wow, just read this thread....thank you Tracy for your words. None of the choices we make along this journey are easy. And no one can truly know what choice they would make unless put in the exact same position (and that can never happen as we are all individuals). I have doubted some of the choices I have made but realize doubting is not productive/healthy. The only right choice is our own choice.