I think I'm in trouble!

VDC · 01-29-2016, 09:03 PM

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 · 01-30-2016, 11:51 AM

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 · 01-30-2016, 12:35 PM

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 · 01-30-2016, 10:41 PM

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 · 01-31-2016, 07:00 AM

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 · 01-31-2016, 07:20 AM

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 · 01-31-2016, 01:05 PM

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 · 01-31-2016, 07:01 PM

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 · 01-31-2016, 08:37 PM

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 · 02-01-2016, 07:09 AM

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

Janis

SoCalGal · 02-01-2016, 04:51 PM

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 · 02-01-2016, 06:12 PM

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 · 02-01-2016, 07:42 PM

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 · 02-03-2016, 08:44 PM

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 · 02-07-2016, 09:15 AM

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 · 02-07-2016, 09:56 AM

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 · 02-09-2016, 08:12 PM

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 · 02-10-2016, 08:18 PM

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 · 02-11-2016, 07:27 PM

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 · 02-11-2016, 09:08 PM

YAY for benign!!

Carol Ann