Do I need chemo after my Stage I right-breast mastectomy?

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Mary_Long
Mary_Long Member Posts: 7
edited August 2015 in HER2+ (Positive) Breast Cancer

Had my mastectomy last week and glad to be recovering. I went from not believing this could happen to me and refusing to have surgery to eventually realizing I had to do it. Now that it's done, I feel relieved, and I want to live my life normally again. But my surgeon today said I might need chemo to catch any "rogue" cells that may have slipped away when they did my right-breast mastectomy.

I had two lumps, both around 1.4cm in size in the same breast. One was HER2+ whereas the other was not. My sentinel node came back as negative. Do you think I'll need chemo? Is there a real danger posed by "rogue" cells? I'm worried and scared of chemo. Thank you all for your support. Reading this forum has been invaluable to me. I wish you all the best.

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  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited July 2015

    I think because you had one tumor HER2+ that you would need to do chemo. I could be wrong though.

    Nancy

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2015

    Hi!

    HER2+ cancer is aggressive and multiplies quickly. At the very least, I would expect your medical oncologist (MO) to recommend Taxol and Herceptin as adjuvant therapy. Yes, chemo strikes terror in the hearts of many. But, today's chemo is often manageable. I did 5 months of chemo for my HER2+ cancer, and it was OK. I worked during chemo, and my MO successfully helped me manage the side effects.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2015

    NCCN guidelines indicate that a 1.4cm Her2+ mass, even though surgically removed, needs adjuvant systemic treatment with chemotherapy and Herceptin. The guidelines specifically state that for hormone receptor negative and Her2+ if the mass is 1cm or larger, that chemotherapy with trastuzumab (Herceptin) is recommended. For hormone receptor positive and Her2+ the same recommendation is made - both of these recommendations are for node negative and node positive situations. I tried to link the specific pages, but the links expired - this information can be found on pages 39-40 of the NCCN Guidelines for Stage I-II Breast Cancer at www.nccn.org I would also recommend you review this linked info regarding the positive outcomes for early stage treatment with the Taxol/Herceptin combination mentioned in the post above. Whatever chemo regimen your oncologist feels is best, you can be reassured there are members here who have received the same, and who can you advise and encourage you.

    http://www.breastcancer.org/research-news/20140207...


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  • Mary_Long
    Mary_Long Member Posts: 7
    edited July 2015

    SpecialK, those links are unfortunately broken. Any way to fix that?

    I would love to hear from anyone who had a Her2+ mass and did not undergo treatment and is still a survivor. I'm just worried about the chemo side effects, like nausea, weight gain, and hair loss.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2015

    Mary Long,

    I doubt that you'll find many women who were HER2+ and refused chemo. HER2+ cancer is very aggressive. Chemo side effects vary but for many women, Taxol is bearable. It gave me mild diarrhea, which I managed with Imodium. I lost weight on Taxol because it altered the taste of food for me. Taxol isn't associated with dramatic hair loss, though I cannot attest to that because I lost all my hair from Adriamycin/Cytoxan. Good luck!


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  • mye
    mye Member Posts: 130
    edited July 2015

    Hi Mary, because Her2 is so aggressive it usually gets treated more aggressively than other types of early cancers. Per my BS (in my case) even though my scans and lymph node needle biopsy showed no lymph involvement, there is still a great chance that some cancer cells got away (through lymph nodes or bloodstream). I have Her2+, hormone negative, grade 3, high proliferation rate (Ki-67). The standard of care in my case is neoadjuvant TCHP (Taxotere, Carbo, Herceptin, Perjeta) chemotherapy, since my tumor was a little over 2cm. I can very much relate to not wanting to subject your body to the toxins of chemo. I was terrified, also because of its possible long term effects. And the first round was terrifying because I did not know what to expect and what was "normal" reaction. By the second round it was already familiar and therefore a lot easier.to cope, It is no fun, to say the least, but manageable. Personally I did not gain any weight, but lost a few pounds. Hair, yes did fall, but there is the option of using cold caps to preserve it. There is lots of info about them out there. Best of luck to you on your journey


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  • molly1976
    molly1976 Member Posts: 403
    edited July 2015

    Hi Mary, I had a 1.6cm HER2+ tumor removed and did the taxol/herceptin combo for 12 weeks. I did lose my hair but the side effects were very manageable for me. I had about a day and a half per week when I was more tired than usual but I worked through the whole thing and felt normal much of the time. Chemo is no fun, that's for sure, but for me it was a no-brainer if it means saving my life down the road. I know we hear the horror stories more than the ones from people like me who managed it relatively well, so just wanted to share my experience.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2015

    Mary Long - I tried to fix the links but could not get them to link successfully. I edited my post to reflect what they said, and also linked the site with the specific page numbers to look at.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited July 2015

    Hi MaryLong:

    I think that the BC.org link that SpecialK provided is for this research summary, entitled "Herceptin Plus Taxol Seems to Reduce Recurrence Risk of Small HER2-Positive Cancers":

    http://www.breastcancer.org/research-news/20140207...

    I believe this is a later, more complete study report from Dr. Winer's group at Dana Farber (originally published in N. Eng. J. Med, 2015), available courtesy the US govt for free here:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC431386...

    In this paper, T1c: >1.0 to ≤2.0 cm.

    Do you have invasive ductal carcinoma (IDC)? That is the most common. Sometimes, the NCCN guidelines say "consider" this treatment. In contrast, for HER2 positive ductal carcinoma > 1 cm, they do not use the word "consider". Thus, as SpecialK said, it appears that guidelines indicate treatment with chemo + traztuzumab (Herceptin) and this is likely what will be recommended to you.

    You also mention a second 1.4 cm HER2 negative tumor, but did not indicate ER/PR status. Chemotherapy might be independently indicated for treatment of the second tumor depending on various factors (but there is not enough information here).

    To help you understand the treatment recommendations better, you could ask your MO to separately describe what the treatment guidelines recommend for each of the tumors you have (break it out for you). Also, you might want ask whether having multifocal disease (2 tumors) affects the treatment recommendation and your risk, and if so, why.

    You will find a lot of support here no matter what.

    BarredOwl

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  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited July 2015

    Marylong I had a very small her2+ tumor. 1.5mm. And about 1mm of micro invasion in my dcis. My her2+ score was VERY high and I had comedonecrosis. So I chose to do taxol and herceptin. I am working full time with two small kids. Biggest complaint is heartburn and diarrhea manged with meds. My hair has gotten thinner, and I cut it a bit shorter, but I am 7 out of 12 treatments in and I still have my hair. Chemo has come a long way. Hugs.

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  • Mary_Long
    Mary_Long Member Posts: 7
    edited August 2015

    Thank you so much for all of the responses, everyone. I am meeting with the oncologist on Monday to get more information on the tumors. Here is what I know so far:

    There was some confusion on my path report. They thought the tumors were ductal but then they found they were lobular after further testing. Can anyone help me interpret the below results in regard to which chemo I'll be needing? Will it be the strong stuff? And how long?

    Site 1:

    Estrogen Receptor (SP1; Ventana): 99%, 3+, Positive

    Progesterone Receptor (1E2; Ventana): 10%, 2+, Positive

    Proliferation Index Ki-67 (30-9; Ventana): 1%

    HER2/Neu (4B5; Ventana): 1%, Negative


    Site 2:

    Estrogen Receptor (SP1; Ventana): 0%, Negative

    Progesterone Receptor (1E2; Ventana): 0%, Negative

    Proliferation Index Ki-67 (30-9; Ventana): 1%

    HER2/Neu (4B5; Ventana): 1%, 3+, Positive


    And does hair grow back after you lose it? Thank you all for your help. My prayers are with you all.

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  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2015

    Hi!

    Yes, in general, hair grows back for most women. There are a small number of women who receive Taxotere who don't see hair re-growth. I got Adriamycin, Cytoxan, and Taxol, and my hair grew back (and it came back wavy).

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  • Mary_Long
    Mary_Long Member Posts: 7
    edited August 2015

    It sounds like Site 2 is double negative but her2 positive. Would it be better if it were triple positive?

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  • Suladog
    Suladog Member Posts: 952
    edited August 2015

    Dana Farber study

    Mary,

    You'll find a lot of help and sympathetic people here who have all walked thus oath.

    I've had chemo twice in my life 25 yrs apart, first time triple negative the last time triple positive. My tumor last year was 7mm and node negative, I still was advised to do chemo, Taxol and herceptin . Even for a tumor that small . Many women with rumors even smaller than that are advised to do chemo/ herceptin if they're HER2+ Dana Farber Cancer institute released the results of a study at the end of last year where they found that even women with early stage breast cancer under 1 cm were advised to do chemo as the others have said, Her2 is like a pit bull and you don't want to screw around with it. The chemo Dana Farber suggested is sort of called "chemo light" it is 12,wks of taxol/ herceptin and then herceptin every three weeks until the end of the year.


    Believe me I didn't want to do chemo either but I'm very grateful that there is herceptin and that it works really well for HER2 + people. I did 12 wks of taxol/ herceptin and finished in April, I'll be done with herceptin end of December . I did not gain weight, and my doctors at UCSF suggested I cold cap to save my hair, which I did. There are a lot of women on these boards who have done the same. I kept my shoulder length hair, and the only people who knew I was having treatment were those I told. I did lose my other body hair but that was not that big a deal as long as I had hair on my head. Cold capping is one thing we didn't have back in 1990, the last time I had cancer. You might ask your doctors about the possibility of cold capping

    Chemo is not a party by any means, but it's not that bad and many people continue to work and go about their lives pretty much normally during it. Herceptin is NOT chemo and there is no hair loss associated with it. There are a lot of people here who can help with any questions you have . Good luck and remember you're not alone in this. The little link at the top of this post goes to the Dana Farber study which has a lot of information for women with small early stage HER2+ cancer

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  • Meow13
    Meow13 Member Posts: 4,859
    edited August 2015

    Yes you may want to do cold caps, I have heard they really do work and save mostly all your hair. Also I have heard warnings on Taxotere and permanent hair loss. I believe you can use something other than Taxotere to avoid that unacceptable side effect. With my oncodx number 34 they pushed chemo for me but I didn't do it. But I was not her2 positive. Being her2 positive may give you more options to get rid of your cancer for good.

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  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited February 2016

    Hi MaryLong:

    I saw your subsequent comment that it may be lobular, not ductal. The likely recommendation for you would not be changed by this histology (lobular). However, because one of the tumors is ER+PR+, you may also benefit from some sort of (anti-) hormonal therapy. You can find out more about that here:

    http://www.breastcancer.org/treatment/hormonal

    BarredOwl


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