< 5 mm HER2+ IDC...why NOT chemo???

Dancetrancer...before my her2 report came back, my BS said if it was negative, that I was in the gray area for chemo due to size (a smidge under 1cm and only a small part of that invasive,rest was lcis and dcis).



The positive her2 changed all that. I immediately needed herceptin. I interviewed 3 oncologists. All three said chemo with herceptin. I said why not just herceptin? They said that the herceptin studies were done with chemo, and there is not enough long term info on herceptin alone, so at the moment, they operate on the side of what they do know, and that is the two together work.



Concerning radiation...I am kind of surprised they encourage that. None of my docs recommended that. I insisted on meeting with a RO before Bmx, and even he said no, unless it was in my lymph

nodes. Im glad to have that in my back pocket for later in case it comes back.



The onc I settled on recommends herceptin for virtually everyone that is her2+, feeling that it is very sneaky and little cells like to hide. It is very expensive, however my insuance company aproved it immediately. I suspect that the the cost I was given anf the cost that actually transfers between the docs and insurance might be substantially different, otherwise it is about 70,000 I think.



I also take tamoxifen, although it annoys me as I was not that er/pr positive.



My chemo plan as a little different than many and I think beter tolerated. Very little nausea, tired a litle, some joint pain. I had taxol weekly for 12 weeks so it was never dose dense. If you go the chemo/H route, ask your docs. Two of the ones I interviewed recommended that. The other suggested 18 weeks of a trio that included adrymiacin. Ummm...no thanks.



Hope the other two know what they are talking about. Read all about side effects and preparation on this board. It is so helpful. Everyone reacts a little differently and as TLG mentioned, we now all have a masters (I think mine is a doctorate) in BC treatments. My doctor and his nurses were very thorough in telling me, but even so little thins slip their mind or they might happen to me and no one else. (for example, two kidney stones while I was on chemo that they dont know if they were trigged by chemo or just a freak coincidence).



Ask lots of questions here and of your docs. And find one you really like because you have to feel comfortable with them. Interview others if needed. In my case, I wanted someone that considered me part of the team and wasnt offended when I rolled in with two pages of questions and studies in my hands. I think he likes it know. Keeps him on his toes.

Dancetrancer-mine was multifocal, so my cancer cells are mixed in with the lcis tissue as it was explained to me. The only reason all three oncs said yes to chemo is because they wouldnt give herceptin without "mixing a little chemo" to make it work better. Those were my oncs words.



It would not surprise me in a few years to see them pull chemo out of the herceptin mix for small tumors that normally wouldnt need it.



I am far less worried about a local recurrence and continually worried about mets due to her2. Bs said she suspected my risk for local recurrence was about 1%.



Although I was on the bad side of the stats on everything but lymph nodes, so I guess I should knock on wood.

Dancetrancer ~ it's 1.3 cm. My hubby will look up his source and I'll post it later. It's just all so overwhelming. I go back and forth about what to do, then read here about the side effects these so very brave women are going through and I get very scared. 

Hello dancetrancer,

I figured I'd chime in here since I was going through all of your agony last year at this time.  I cannot speak for HER2+ (I am triple negative), but I also had a surprise within my DCIS: a 3 mm. tumor.  I found that there were two things that helped me:  getting as many opinions as possible and finding out the risk of distant recurrence.  I am fortunate to have Roswell Park Cancer Institute within a 10 minute drive, so after being referred there from my original MO who didn't have a clue what to recommend, I was able to get a consensus from all of the breast MOs on staff there, and it took them all of a few seconds to make the decision that chemo is not warranted in my case.  Although triple negative BC is an aggressive cancer, HER2+ is the most aggressive, so the recommendations may be more strict in your case.  The MO I eventually went with at the cancer institute gave me a 1-2% risk of distant recurrence which to me, was small enough to be able to live with.  My risk of death for other factors over the next 10 years is 4 % which is a good comparison (I was 42 at dx).  There is a website called Cancer Math where you can put all your details in and they will give you all the pertinint risk numbers.  It was very helpful to me and still, on days when I question my lack of chemo, I pull the numbers up to ease my worry.  One issue that my MO did discuss with me is that chemo isn't 100% effective (only about 50%) so my risk would only go down to .5-1%, thereby still giving me a risk and therefore a reason to worry regardless.  She recommended weight loss and fat intake reduction since, for trip negs, has been found to reduce recurrnece by 40% (not sure about HER2).

Hope this helps you in some way.  Really I feel your pain.  Try to relax and put your mind in a good place in order to make this tough decision.  You need to do what you feel comfortable with.

Hugs to you and take care,

Susan

Chemo and radiation is the only thing they have to fight triple negs. That is why it is the least favorable one.



With herceptin now in the mix for the her2 folks, it gives a leg up and according to all the oncs I interviewed it is considered a game changer.



For triple neg, if there is no recurrence in three years, outlook is very good.



For er+ folks, while the risk goes down substantially after 3 years, it remains a possibility.

dancetrainer,

VR made one really important point that I want to reiterate.  You need to distinguish between studies and reports that quote recurrence numbers that include both local recurrence (in the breast area) and distant recurrence (i.e. mets) and those that talk specifically about distant recurrence.  A lot of the data that's been presented here hasn't been clear on that.  

Here's more information from one of the studies about HER2+ T1a/b tumors: "The 5-year recurrence-free survival was 77.1% and 93.7% in patients with HER2-positive and HER2-negative tumors, respectively. The 5-year distant recurrence-free survival was 86.4% and 97.2% in the 2 patient groups."  http://www.medscape.com/viewarticle/585328   

So this means that the total 5-year recurrence risk (Iocal and distant) was 22.9% while the distant recurrence risk was 13.6%.  The role of chemo and Herceptin is to address the 13.6% recurrence risk - by having these treatments, distant recurrence risk would be reduced by approx. 50% (or is it more?) to less than 7%.  

Because this issue has affected a couple of other women here who I've been corresponding with, I've been reading up on the studies done on small HER2+ tumors.  As the above quote indicates, there is no question that small HER2+ tumors are significantly more aggressive than non-HER2+ tumors.  There is no question that recent studies are suggesting that T1a/b HER2+ tumors do warrant chemo and Herceptin. There is no question that chemo and Herceptin will significantly reduce the risk of distant recurrence for those who have T1a/b HER2+ tumors. The missing piece of the puzzle is the question as to whether there is any significant difference in the risk of mets between T1a and T1b tumors - and if there is a difference, if it's enough to tip the scale when considering the benefits vs. risks of chemo and Herceptin.  This data doesn't seem to be available anywhere - I've been doing a lot of searching recently and have come up with nothing that answers this question. That's the grey area where you fall and that's why you are getting so many differing opinions.

That's also why I think IMHO when they do update the recommendations, there will be one big, long footnote explaining the level of evidence.

dancetrancer,

Part of what they also haven't defined well in regard to premenopausal importance is what the total effect on the menopausal status actually is for a particular woman with chemotherapy and with different chemotherapy regimens. Hormonal measurement doesn't tell the entire story, nor does cessation of periods, although it is better than nothing to go by. Often younger women will go through chemotherapy and cessation of their periods, only to have their periods resume later on again.

In my situation at age 51 I was premenopausal at dx. After CAFx6 (which is documented as being equivalent to ovarian ablation plus tamoxfen), I was still somewhere in the range of not being totally postmenopausal after just the treatment with chemotherapy. But after just 2 weeks of tamoxifen following CAFx6, I had vaginal pain and dryness, lack of libido, etc. I then used the Estring for several years and it helped somewhat. But I still might not have become fully menopausal even then, because at 56 years of age (5 years after chemotherapy and 1 3/4 yrs of tamoxifen), the Estring stopped being helpful and libido disappeared entirely and vaginal dryness was much worse. There is no clear answer to when in that sequence I would have been postmenopausal and presumably, more protected from recurrence.

With chemo you get repeated cell death (although probably not stem cell death), plus some indefinite effects upon menopausal status that depend on the woman's individual make-up and age.

With surgical ovarian ablation, you don't get the cell kill but you get definite menopausal status, although still with limited hormonal production from other parts of the body. We don't know how much the addition of trastuzumab would provide in terms of protection.

If you can get chemotherapy due to the HER2  positive aggressiveness, it would most likely be given with trastuzumab. There is no definite information yet as to whether the trastuzumab is capable as a single agent for early stage bc of handling the risk. As a single agent, it would have whatever advantages there may be to being given with an intact immune system (which chemotherapy would not allow).

Each person has a different comfort level with the choices, but the important part is understanding where the weaknesses are for each choice and where the strengths are. As others point out, the recommendations go by what has been proven, not what "might be".

With chemotherapy, the permanence of full postmenopause is uncertain. But one can also add aromatase inhibitors after chemotherapy. They don't affect menopausal status other than that they don't work until one is menopausal, in preventing some production of breast estrogen. (I'm not sure whether that should say "menopausal" or "postmenopausal".)

Dancetrancer, we love peanuts! Actually, we pine for all kinds of nuts and nutty questions. While your senses are being overwhelmed by your diagnosis, your difficulty in obtaining the correct diagnosis and all the data concerning protocols for the characteristics of your tumor.. At the end of the day, you need to decide how risk adverse you are based on the available data. If it offers you any comfort..all of us had to do the same. Similarly, sisters with intermediate OncotypeDx scores are usually in the same quandary with being in a gray area. I wish you well. You really have been through the mill with getting properly diagnosed. I hope, ultimately, whatever you decide brings you peace.