No chemo?

[merryg]

I am post-menopausal (age 58) and 3 wks. post mastectomy for IDC, 2.2cm tumor, ER/PR- and Her2+++, Bloom Richardson 3 (score 9). Margins generously clear at 1 to 3.5 cm., sentinal node negative. T2N0M0 but told by one oncologist it was only a hair's width past Stage 1. My oncologist's recommendation is for 1 entire year of three different chemo agents THEN Herceptin, all at full doses. She will not give Hercepin alone or first, or with only one other agent. Due to other medical conditions/risks, I've chosen to forego the whole thing. Question: What is the most likely scenerio to expect next, in terms of recurrence/metastasis, and how far out in time? All the recurrence/survival numbers I've seen include later stages, larger tumors, tumors with positive lymph nodes, and/or hormone-positive status, and do not break out Her2+.
merryg

[Unregistered]

how about a new oncologist. you should talk to someone else and see what their strategy is for your cancer. If you still don't like the answers you can then tell them that you are willing to to one round of chemo and check your standings, or you will do 2 rounds, say 4 of a/c and four of taxol and herceptin and then see how your scans show up. listen it;s your body and your choices. theses are reasonable request and you need to be in the same page as your onc or it will never work. I am somewhat in the same boat. I am stage 4, took four month of chemo. my cancer is still everywhere but much smaller, i told onc no more chemo, just herceptin. I may end up the poster child for less chemo, or i may end up progressing faster than i can think, but it was my choice not to do anymore chemo. we all have our own tolerences. but there are many , many ladies on this board who have flown through chemo at your stage and have been without disease for many many years. I can only tell you that i would give my right arm to only be a stage one. you have many options and all of them spell a long happy life. seems kind of unfair for you to want to throw in the towel when this is soooooo controlable and curable, being a stage one. please take treatments. do it for all of us who don't have a chance at cure. only at keeping the mets stable and from killing us. i know this is scary and the very word cancer can stop your heart. I'm not trying to minimize your fears or seriosness of your situation, but you can do so much. go see another doc, really talk to them. they will work with you and for you. God bless you. I hope you can get some good advice here from gals that have stood in your shoes before. there are a bunch of great stories, with life without cancer, after being a stage one. Speak up girls and let her know!!!!

[merryg]

Thanks for reply. At this point, d/t other longstanding medical conditions, chemo is not an option. I'm wondering what to expect next.
Thanks, too, for your suggestion to find another oncologist -- this one was pretty inflexible and did not provide meaningful info, mostly empty hype.
merryg

[Becky]

There is a new test out (last Fall) called Oncotype DX. Your surgeon or oncologist will send a piece of your tumor and the Oncotype DX lab will test it for (I think) 71 genetic markers. Then your tumor will be scored depending on these markers and categorized by low risk, medium risk or high risk of recurrence.


I do know that at Stage 2, you should seriously consider chemotherapy but this test is an option to help you make up your mind since you are node negative. Oncotype DX is a helpful tool when you are on the edge of what to do.

Hope this helps.

Becky

[aquinis2000]

Hi merryg, It sounds like your onc is not listening to you. If your other medical conditions make it intolerable for you to take chemo, why not radiate? Most stage one idc is treated with radiation, isn't it? I would go to a new doc. if you think she is inflexable and not listening to you, you need to go to someone who will .Most of the most savaay and intellegent people on this site are always bringing up new treatment options to their doctors, and they listen. I hope that you dont feel like all is lost. These people on this site will give you the best advice and doctors around. just hold on, someone will answer you with a boatload of knowledge and experience. Good luck and I will keep you in my prayers. Toni

[Lyn]

Hi there, radiation shifted a lot of my mets to lymph glands, so did Aromasin, I can't have Tamoxefin because I am not hormone responsive, and after what happened to a friend of mine I would be very wary of it anyway. She developed clots on her lungs which a long time to diagnmose and have been very hard to shift and are still there. I know some cancers are very agressive, mine was and I needed a truck load of chemo, and been on Herceptin for over 4 years and now I have mets to my remaining breast which has been there for 12 months now and doesn't seem to want to budge even after radiaiton and oral chemo, if the lumps under my arm are positive then I will try one of the later drugs Gemzar. I have a very flexible oncologist who asks me what I want to do next, it is a pain sometimes, I have to do a heap of research and I get most of my answers from the ladies on this board. Having breaks from Herceptin can restore your heart function, I was diagnosed in 98 and have been having non stop treatment ever since, I also have a mixed connective tissue disease, hashimotos thyroid, chronic heart failure in 3 valves, neuropothy, both shoulders damaged from falls and not caused by bone mets, so I have had a lot of dramas along this bumpy road, NED a few times but never long enough, attitude has a lot to do with recovery so hope this helps.

Love & Hugs Lyn

[Alice]

Hi,

I don't think there is a right way to answer your question.Everyones cancer progresses differently.I think if we had the answer it wouldnt be so scary.I think what all the girls here are trying to convay is that there are so many that don't post on this site or other sites that have beat this disease that have started at a much poorer prognosis than you are starting at.Your cancer my or may not progress no one knows for sure.We all just want you to have the best chance possible.As the others have said there are many ways to go about treatment and I also agree if your onc is not willing to work with you and your wishes a second opinion is in order.

Good luck keep us posted, Alice

[Unregistered]

My sister had pretty much the same stats as you Merry - just over the line into Her2 Stage 2(ER-/PR-), her tumor was 2.5 cm, and everything else was clear. She had a lumpectomy in July '03, then the Adriamycin/Cytoxin combo(very strong chemo) and had just started the Taxol arm of chemo when recurrence was found in same breast. She had a mastectomy, and had radiation treatment after starting Herceptin in March '04. The Herceptin has kept the rest of her body clear ever since, but doesn't cross the blood/brain barrier, so she is contending with brain mets, as are many other women on this site. I wish she'd had the option to start on Herceptin as soon as she was diagnosed (it's now approved for early stage bc, but wasn't then), and maybe she wouldn't have developed brain mets. Herceptin is not like chemo- very mild if any side effects, no loss of hair, no nausea etc. A very small percentage of women experience weakening of the heart muscle, and some can go back on Herceptin after a break. My sister's heart performance has been consistently strong throughout Herceptin treatment. I urge you to fight for Herceptin, and find a new onc if the one you now have refuses.

[michele u]

Merry g

How postive was your Her2? If they checked it with IHC it will say 1+, 2+ or 3+ or just Her2+, He2++, or Her2+++ if they checked it with FISH it will say a number. IF you are stongly positive Her2 by FISH or IHC i would fight for the Herceptin. I would also consider a new test PTEN on your tumor. THis biomarker can predict if the Herceptin will work. IF you have PTEN then it is more likely to work. Look at my post on biomarkers. It has the name and number of the lab that checks the PTEN

[StephN]

Hi Merry -
Sorry to hear you are in our cancer boat now, but there are many compartments to this "boat."
I happen to be in the Stage IV with brain mets compartment - was also ER/PR-, and was treated before Herceptin was an option for adjuvent or early treatment. If I had been able to get the Herceptin, I feel that my disease would not have progressed so quickly (especially since it has worked well for me once I was Stage IV and could have it).
Thankfully I am on it now and have not needed any chemos for over 3.5 years. I feel that since my mets (2) to my brain came so late - 2 years after finishing chemo - that they would probably never have gotten there in the first place if I had ACCESS to Herceptin earlier. But cancer cells are sneaky and can lurk around for years before activating into a full blown tumor.

They know that Herceptin does not work for everyone and are finding out more about why this is.
Having your tumor analyzed (as was earlier suggested) for more markers and information will give a GOOD, up-to-date oncologist more to go on if you wish to pursue a less harsh treatment than chemos.
Ask around around and get a second opinion - I actually had three consults before I settled on the onc who has treated me so successfully for the past 6 years.

If I read your post right, your Bloom-Richardson score is 3. Meaning a low grade tumor (mine was high). But even low grade tumors can be put into gear by factors that are not yet assessed in your case.

I am curious as to a "year-long" chemo approach that was suggested to you. The chemos are normally for about a 6 month duration. With your mast they usually feel no need to radiate.

It is a lot to think about - but keep considering the alternatives keeping in mind that your earthly life is in your hands.

[Michelle]

merry,
I was also diagnosed stage 1, but er+/pr+, her2+++, grade 3,1.9 cm tumor . My onc. highly reccomended 4 AC, but left the decision of 4 taxol up to me. I'am now continueing with herceptin and tamoxifen. My onc. tells me I'am still high risk, but went above and beyond what I needed to do. I would strongly reccomend you seek a second opinion. Perhaps you can find an onc. that will give herceptin by its self.noone can give us a timeline for reoccurance. I know women who have went several yrs. without chemo, and some who only went 10 months with it. Please be as aggressive as your medical situation will allow. Best wishes to you in whatever decision you make.
Michelle

[merryg]

Sounds like we're rowing a similar boat.
After much research, met with my doc today, who agreed to a "watchful waiting" approach, with serum HER-2 blood tests every three months. If/when the numbers indicate, we'll try for Herceptin alone (or, if enough time passes, perhaps Herceptin and another agent will be possible for me later). I'll add 1/2 hour of exercise per day for its benefit of delaying recurrence. Hope this approach is successful -- either way, I'm pleased with this alternative to all or nothing.
merryg

[julierene]

I was exact same dx except I was 2.0 cm with extensive DCIS, but 28 years old. I was 8/9 on the Grade, and I was Her2 +++. NODE NEGATIVE, bilateral mastectomy, ovary removal - - I did everything they would let me do. I took antioxidants GALORE, exercised, stayed in the normal BMI range, ate healthy (better than most people I know), etc etc.

I took the Adramycin and Cytoxin 2 weeks apart for 4 rounds, then I took Taxotere for 4 rounds 2 weeks apart. 2 years later, I turn up with liver and bone mets.

These statistics were for ages 49 and younger...

My statistics were 89% chance of being disease-free for 10 years from MayoClinic.com.

Statistics were 75% 10-year survival with no chemo.

Maybe the statistics aren't what would be important. Answering some very basic questions like -

1. How will I feel about myself if this comes back and I chose not to try the chemo?
2. How will I feel about myself if I go through the chemo and it still comes back?
3. What does my family think and want for me?

[merryg]

Thanks for info and reply. I am Bloom Richardson score 9 (Grade 3), Her2+++. My recurrence/survival stats are not as optimistic, but Herceptin may help. D/t other medical conditions, my best years will be the next 2-5, so I and hubby want best quality of life short term. If oncologist will give Herceptin alone, will discuss. Planning to get second/third opinions.
merryg

[AlaskaAngel]

I don't mean to upset anyone by my opinion, but I would have appreciated having access myself at the time of diagnosis in 2002 to the kind of information you are seeking.

Although things have improved in the last few years in terms of access to predictions, Merry, no one seems to want to spell out the answers in terms of what the stats are for our situations at 2 years or 5 years, only for 10 years. Maybe that is a good thing in some instances but for early stage bc it is known that around 60% will never have recurrence if the only treatment they have is surgery and I think the 2 year and 5 year numbers should be openly available to us.

When I asked one onc about getting Herceptin as a Stage 1 HER2 positive who had already done chemo, rads and hormonal treatment I was told "you've made it past 2 years and there is a real drop-off at 2 years, so no Herceptin for you..." but couldn't get any numbers from the onc for the basis for that statement. Not only that, but the onc used an Adjuvant projection for me based on a patient who was 10 years older than I was at diagnosis, which does make a definite difference. I've only had 3 opinions all told by oncs since diagnosis so I guess one has to pay for more than that to get a genuine straightforward opinion?

I'm sorry there just doesn't seem to be a good place for early stage breast cancer patients to be treated with enough respect to be given access to either the numbers short-term or to even-handed participation in clinical trials for drugs like Herceptin.

I hope very sincerely that you find yourself in the safe 60%, or at the very least, you will come back from time to time and share your story with us.

AlaskaAngel

[merryg]

I also hope not to upset others, but that's precisely the info I was seeking. The onc. gave me adjuvantonline stats (42% recurrence and 30% death in 10 years) saying, these also include ER/PR+ patients treated with tamoxifen ... and include larger tumors, up to 5 cm.
Being ER/PR- and the width of a hair past Stage 1, this wasn't useful info. With much searching, I found these stats for relapse in early breast cancer, at a 2-year f/u: ER,PR-, Her2+, node negative, 18%. 1-3 nodes 25%, greater 4 nodes 33%, without Herceptin. (Also, ER/PR+, Her2+, node negative 9%, 1-3 nodes 12%, greater 4 nodes 33%, also without Herceptin.) Very little detail, and as of October 2005, these results "weren't out yet."
The oncologist estimated the benefit of adjuvant therapy, based on her non-relevant stats, to be 6% reduction in recurrence and 11% reduction in death, both at 10 years. When I asked about 5 years, she said not to try to slice numbers. In my case, sounds like less than 1% per year difference in outcome, considering my ER/PR- and Her2+++ status.
merryg

[StephN]

Dear Merry -
Understanding now that your tumor IS high grade, that puts a little more urgency on things from what I know.
Getting the Her2 serum test is great, but they say this really works better for those who already have mets and is useful as a tool to monitor if treatment is working or not.
I am not sure how well this would work for someone without mets. I suppose the reverse could be true, but after having met the researchers and the doctors who created this test in San Antonio this past Dec., this is my take on the test.

I would go for the Herceptin as it is very benign in terms of side effects and harm to the body in general. For me, there are NO side effects at all.

Keep seeking those additional professional opinions, and take life a day at a time.

[Unregistered]

Just in case of interest, or for future reference if they are doing trials, re potential limited wider body impact. It would need comparing with RT results.

RB


http://www.cancerpage.com/news/article.asp?id=9367


ABSTRACT

NEW YORK FEB 07, 2006 (Reuters Health) - Chemotherapeutic drugs injected into the mammary ducts effectively prevents and treats mammary tumors in rat and mouse breast cancer models, according to a report in the January 15th Cancer Research.

"The hope is to deliver drugs at high concentrations at the site of the cancer, while avoiding harmful side effects to the rest of the body," Dr. Saraswati Sukumar from Johns Hopkins University School of Medicine, Baltimore, Maryland told Reuters Health. "In laboratory animals, this treatment also gets rid of preneoplasias and initiated tumor cells, thus preventing cancer effectively. The approach makes a whole lot of sense."

[julierene]

http://her2support.org/vbulletin/showthread.php?t=22662

Please check out this article listed under a new thread. Your 6 year rate of recurrance may be 40%.