36 year old mom trying to figure out chemo or no chemo

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mommichelle
mommichelle Member Posts: 191

Hello!  I was recently diagnosed, had a masectomy 6 weeks ago and am now trying to decide about treatment.  3 opinions...1-either chemo or tamoxifen, 2-chemo, 3-no chemo.  The size of my invasive cancer was 4mm and no lymph or vascular involvement was identified.  I have heard we want to treat the biology of the cancer (by the chemo recommending doctor), not the size and I have also been told by another doctor that the risk of chemo out weighs the benefit.  I have two small children (3 and 5) and want to be here for a long time.  Worried about long term side effects of chemo.  I do worry about short term too, but I will deal with it.  Just trying to figure it all out.  Chemo doctor recommends ATCH regimine and other two doctors indicated TCH.  Doctor recommending no chemo said in good conscience, feeling that I do not even need chemo, she could definitely not recommend the A component of ATCH due to possible heart issues.  She also said coupling that with herceptin would be too much risk for the heart with too little benefit.  Curious about other people's decisions and chemo regimines.  Any input would be sooooooo appreciated!

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  • lovemygarden
    lovemygarden Member Posts: 342
    edited August 2010

    I opted for 12 weeks Taxol + Herceptin, followed by the remainder of the year's treatment on Herceptin only. (I wouldn't have touched A + Herceptin with a 10-foot pole under any circumstances, due to the heart risk! but my onc doesn't even use A with H anymore, because of that.) I felt very stronly that the Taxotere/Carbo regimen would be overkill. IMO the TCH would definitely be overkill for yours. The Taxol/H x 12 is being used more and more commonly for Stage 1 node-negative situations like yours and even for Stage 2a like mine. Sloan, Dana Farber, Stanford, and several other major cancer centers are using Taxol/H quite a bit lately. It's a much easier chemo on your body than TCH! I sailed right through it and so did two friends of mine on the same regimen. This regimen option is  something that you might well want to bring up to the oncologists you've talked to, if you feel more comfortable with a Chemo rather than a No Chemo scenario. 

    If you are HER2+ I don't quite understand why "no Herceptin" is being presented as an option. I thought it was pretty much automatic nowadays to recommend it if you have HER2+ BC of any size? AFAIK, you can't get Herceptin by itself without first having a course of it combined with a taxane (either Taxol or Taxotere).

     If you choose Taxol, you get just that plus the Herceptin. If you choose Taxotere ("Taxol's Evil Twin" Cool ) you need to also get a "C" component (either Carboplatin or Cytoxan) along with it.

     I'm ER/PR neg, so have no experience with tamoxifen etc. 

  • HES112
    HES112 Member Posts: 29
    edited July 2010

    Hi ...

    I had 8mm and was dx in May 08.  I had lumpectomy and no node involvement but ER positive and Her2 positive.  I was on the Taxol and Herceptin for 12 weeks and then followup every 3 weeks with Herceptin for the full year.  At that time it was a trial through Dana Farber and Sloan but my understanding is that is now a standard of practice for women with small (under 1 cm) no node involvement cancers.  My understanding is that you should have the Herceptin with a chemo agent as it is crucial for the HER2 positive cancers.  It was a very manageable option....Hope

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited July 2010

    You have kids and you are young.  Please consider chemo + herceptin.  HER2 is very aggressive and chemo is indicated for HER2 (chemo potentiates the Herceptin).  I just finished a year of herceptin and had Taxotere and Carboplatin last fall. It was very doable.   check in with other mothers that have young children.  Wishing you the best.

  • Faith316
    Faith316 Member Posts: 2,431
    edited August 2010

    I second what Cowgirl wrote above.  Chemo is VERY doable.  Do it.  Do everything to make sure you are around for your kids.  I took adriamycin and cytoxin and then Taxol and Herceptin and had no heart issues from either the A or H.  I later switched to Xeloda and Tykerb and will stay on Tykerb indefinitely. 

  • TriciaK
    TriciaK Member Posts: 362
    edited August 2010

    I think in view of the very poor prognosis her2+ had before herceptin, we need to treat this aggressivly.

    The chemo/herceptin/.rads was very do able for me, side effects were minimal and I'm so glad I did everything possible to help avoid a recurrance. I've five years out now, I dont know if it worked but if it diagnosed tomorrow would do the same again and even more so in view of your age.

    This is a very aggressive type of cancer that likes to travel and spread, before herceptin the prognosis was a year so I'd advise doing all of the above to give yourself every chance to beat it.

    There are no guarantee's, but so far people  treated with this regime are surviving well:)

    Check out www.her2support.org for more long term survivors!

    Tricia x

  • Twinmom77
    Twinmom77 Member Posts: 303
    edited August 2010

     Sometimes it's harder to have options, isn't it? I did 5 out of 6 rounds of TCH and just finished up my year of Herceptin.  I wasn't given any choice in doing chemo or not due to the Her2 and being so young (32 at diagnosis).  I freaked when I heard I had to have chemo but I'm glad I did it now.  My twins were 3 at the time and it was hard at times having younger kids and trying to stay active with them, but we all did fine.  I have had no heart issues from the Herceptin at all and so far no long-term effects from the chemo (except short hair, haha, which actually ended up being really cute on me).  Like another poster said, I wouldn't touch Adriamyacin AND Herceptin with a ten-foot pole, but that's just me.  Hugs to you, I know it's a tough choice.

  • Drim
    Drim Member Posts: 302
    edited August 2010

    I just finished up 4 rounds of Taxotere/Cytoxan 3 weeks ago and did very well. I had virtually no side effects except for fatigue for a few days each round. I started the Herceptin after round 2. Having no issue with that at all so far! I was 43 at diagnosis with a 1.9cm tumor and I would not mess around with the HER2+. I also know people with smaller tumors than mine doing the 12 weekly taxol/herceptin and are doing quite well. At your age and with kids I would try to throw everything at it now.

    Good luck with whatever you decide! You can do it!!

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited August 2010

    Michelle,

    Because your tumour is less than 5mm you fall into a grey area. Over 5mm and you would be given herceptin as standard treatment. Talk to the oncologist and see if he will give you TCH and ask about your possible recurrence rates, then make a decision. AC-TH is only given to node positive patients here in Australia - thank goodness as I would have refused it anyway because of the side effects of Andriamyacin.

    Sue

  • FCB
    FCB Member Posts: 21
    edited August 2010

    Hi--Like Faith316, I did ACTH and my heart is going strong with only a few Herceptins left to go.  Never had a single heart issue.  Good luck to you. Having all those options in front of you must seem overwhelming. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2010

    Herceptin is a strong weapon, but it is not a guarantee.  It, and the chemo that goes with it have the potential to have devastating, long lasting side effects.  We have to balance those side effects against the potential benefits. 

    For a very small tumor, with no evidence and little risk of spread, the risks associated with the chemo far outweigh the tiny potential benefit.

    Yes, people get through chemo, many without suffering congestive heart failure, but others are not so lucky.  Many get through without developing neuropathy, but for those who develop it, especially for whom it lasts, it is life changing for the rest of their lives.

    Michelle has been given the option of taking Tamoxifen which has consistently been shown to be more effective than chemo for hormone receptor positive cancer.  The effectiveness of hormone treatment is the biggest part of the statistical difference between ER+ and triple negative.  The Tamoxifen also seems to be protective against a new cancer developing in the remaining breast which is a benefit that has not been shown by the chemo & Herceptin.

    Trust your instincts.

  • kane744
    kane744 Member Posts: 461
    edited August 2010

    For me, I made my decision based on wanting to know I had done everything available to me to kill the cancer once and for all.  If it works, then it works.  If it doesn't, I still know I did all I could to fight it.  When I was weighing my options, my dh begged me to do the chemo.  To him it meant I was fighting and he wants me around a good long time.  Most things we do in life have risks.  If we hide from the risks, we hide from life.  That's my humble opinion.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2010

    I get the urge to do everything possible, but just because we can doesn't mean we should. 

    What would you think of a an oncologist who encouraged women with a triple negative tumor to do Herceptin and Tamoxifen?  Would you think that the doctor was not keeping the patient's best interests in mind?  Exposing her to significant risks with little or no hope of benefit in her case?

    Sometimes, we need to choose to use the best treatment, not every possible treatment.

  • lovemygarden
    lovemygarden Member Posts: 342
    edited August 2010

    The HER2 positivity is what makes our type of cancer more aggressive and faster growing. Why not utilize Herceptin to reduce that risk?

    I agree 100% with you that there is no sense in using an elephant-gun approach to treatment (which is why I wanted TH instead of the originally recommended TCH). But on the other hand I also would not want to completely ignore a strong risk factor that already exists, if there is an option available to me to reduce it. That's why I opted for a prophylactic BMX of my healthy breast; I liked my odds better that way, and knew I could not live with the stress and worry about that breast if I had not done so. I'd have done the same thing even if I'd had a different type of BC.

     

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2010

    Time after time, hormone treatment is shown to be significantly more effective than chemo. 

    Many ER+ women who are diagnosed at stage IV are given hormone treatment as a first line, instead of chemo, some for many years. 

    Yes, Herceptin is helpful in dealing with Her2+, but it has significant side effects and risks, which are magnified by the chemo that accompanies it, and is of no help whatsoever if the cancer is sitting in a lab having been removed during the MX.  Tamoxifen on the other hand, is effective in preventing distant recurrence if any cells did escape, and is also protective against new cancers in any remaining breast tissue.

    The other thing is that once a treatment is considered to have "failed" (the cancer returns, or spreads) in any specific patient, that treatment is off the table in the future.  That means that if someone uses a specific chemo agent, or Herceptin in the adjuvant setting, and then has a recurrence, they may not be able to use that agent at a point when it could make a very real difference in outcome. 

  • lisasinglem
    lisasinglem Member Posts: 315
    edited August 2010

    Hi Mommichelle - Despite the debate going on in your thread, I just wanted to offer hugs and support to you.  Ultimately, you are in charge of your treatment. You have to make the best decision for yourself. 

    I am 40 years old, triple positive with a high mitotic index, showing that the cancer was very fast growing.  I am opting for chemo and Herceptin (TCH, which I start tomorrow), in addition to hormone therapy, because I am so young. (One of the blessings of bc, is that people keep telling me how young I am.)  I wanted to knock this thing out of the park, in hopes that I will not have to deal with it again.

    I would never tell you how to make your decision, but that was how I made mine.  I wish you all the best.  Show those kids how a thoughtful and strong woman deals with this diagnosis!

  • lovemygarden
    lovemygarden Member Posts: 342
    edited August 2010

    PatMom, I am curious to know the source of the data claiming that side effects of Herceptin (other than heart issues which we all know by now present a higher risk factor if the patient's protocol includes both Adriamycin and Herceptin) are "magnified by the chemo that accompanies it".  Also which Herceptin side effects are allegedly magnified by which chemos? 

    I'm not trying to bite anyone's head off but I am very leery of generalizations, no matter what the subject is (health related, politics, economics, whatever). In such situations I always ask where the hard data comes from. 

    Also there is the prospect of Herceptin's next generation (T-DM1) which actually has the use of a prior Herceptin/chemo combination as one of its prerequisites.  It will be interesting to see the interim data results of DM1's  most recent Phase II trial, scheduled to be released during this October's oncology conference in Milan.

  • bluedasher
    bluedasher Member Posts: 1,203
    edited August 2010

    Michelle, I know that this is a difficult and important decision. I'm sorry you have to go through this.

    Much of what PatMom is saying is inaccurate for HER2+ cancer and not supported by the facts in studies. If your cancer was HER2-, then her advice would be pretty good because for HER2- cancers, it makes a lot of difference whether the cancer is horomone postive or not.

    HER2+ cancer has a relatively high probability of recurrence regardless of whether it is hormone negative or positive and Tamoxifen hasn't been shown to affect that.

    MD Anderson presented results of a retrospective study of women with small (less than 1 cm) node-negative tumors in Dec 2008 at SABC. 5-year recurrence for HER2+ was 23% and about 15% of that was distant recurrence. Recurrence for hormone positive HER2- cancer was much lower (5%) and triple negative was in between the two (15%) but with much lower distant recurrence than HER2+ (5%). That data convinced me that even quite small HER2+ tumors like ours should have chemo. I particularly noticed that recurrence seemed much more likely to be distant (mets) than for the other types. 

    BCIRG 006 was a study that compared TCH, AC-TH and AC-T for HER2+ cancer.  The combination of Adriamycin followed by Herceptin (AC-TH) had significantly higher risk of causing lasting decrease of heart function (more than 2% of the participants). TCH did not. Herceptin without Adriamycin sometimes causes some reduction of heart function though it happens much less often. When it is due to Hereceptin alone, the heart recovers when Herceptin is stopped.

    TCH was about as good at preventing recurrence as AC-TH in that study. There is a slide set on the 3rd interim analysis of results from BCIRG 006 on the BCIRG website. It includes some slides showing the results for the node negative patients though they mostly would have had larger tumors than us. After 5 years, disease-free survival (DFS) was 90% in the TCH arm and 93% in the AC-TH arm.

    So AC-TH is probably not warranted. It may have slightly less recurrence but that isn't worth the risk of heart damage plus the very small risk of leukhemia. TCH carries lower long term risks and it was also lower in short term side effects in the study. 

    I think that there is also a study underway on TH (Taxol or Taxotere, I don't remember which, with Herceptin) for Stage I HER2+ cancer. That would be worth considering as a lighter chemo for early stage HER2+. Taking Carboplatin out of the treatment would reduce the side effects - it seemed to be the culprit in most of mine during chemo. 

    I chose to do TCH chemo and was very glad that I had when the MD Anderson study came out mid-way through my chemo. My oncologist felt that, for my small tumor, AC-TH was not worth the additonal risks it carries and I agree. 

    If the TH study had been available to me, I think I would have chosen it. (It started after I finished chemo.) f the TH study had been available to me, I think I would have chosen it. (It started after I finished chemo.)  

  • bluedasher
    bluedasher Member Posts: 1,203
    edited August 2010

    deleted duplicate post

  • bluedasher
    bluedasher Member Posts: 1,203
    edited August 2010

    Patmom wrote

    [Herceptin]is of no help whatsoever if the cancer is sitting in a lab having been removed during the MX. Tamoxifen on the other hand, is effective in preventing distant recurrence if any cells did escape, and is also protective against new cancers in any remaining breast tissue. 

    This is inaccurate. Herceptin of course also protects against distant recurrence. All chemo does as does hormone therapy because all are systemic treatments with drugs that go through most of your body. Chemo plus Herceptin also has been reported as reducing the occurrence of second primary cancers (i.e. new cancers). Cancer usually takes a long time to develop to the point where it is detectable so any treatment may by chance prevent a new cancer.

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited August 2010

    Michelle - I'm sorry you have to make this decision. Did you onc recommend Oncotype DX? I had it done (prior to getting the results of my FISH which proved my tumor was Her2+). Since you already know your tumor is Her2+, your onc might not get approval for Oncotype DX. I was so disappointed to learn that I needed chemo plus Herceptin for a year - but I got through it and so can you. But try hard to stay away from the Adriamyacins...........they can REALLY damage your heart irreversibly - if you have any problems on Herceptin, the heart function will return to  normal when you stop it. My onc put me on "light" chemo - Navelbine for 4 months (I didn't lose my hair and only suffered diarrhea on the night of my infusion) - the Herceptin continued for the year; my only SE was a bit of tiredness and weak fingernails, that was it. So it's very doable...........just ask your onc if he can also give you Navelbine - if he can't "think-outside-the-box", please go for a second and even a third opinion - Herceptin has been proved to be effective with ANY chemo (not just Adriamycin or Taxol) - there's another woman on this board who also had a small Stage 1 Her2+ tumor and she had Navelbine and is doing very well. Good luck with all your difficult decisions!

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited August 2010

    Bluedasher, thank you for clarifying the issues.  I was scratching my head when I read some of the earlier posts.

  • gfbaker
    gfbaker Member Posts: 173
    edited August 2010

    I was ER/PR+ not HER2, so I can't speak specifically to that, but I can relate to the young and with young kids aspect. My kids were 10 months and 2.5 years and while it wasn't easy, I made it through chemo alright. I took AC/taxol and if you get adriamycin they do a MUGA to see how your heart is to make sure no existing damage. Probably none at 36. I get the reluctance to do chemo with such a small tumor, what you need to figure out is what are the chances of reocurrance. HER2 doesn't help, and neither does being in your 30's. Both mean aggressive. If you don't have it yet, get your pathology report and study it, ask lots of questions. It is a matter of where do the risks outweigh the benefits. I am sorry you are having to deal with this at such a busy time of life, really that you have to deal with it at all.

    Oh, I've heard that oncotype dx test isn't very helpful for figuring reocurrance rates on women under 40.

  • Iamstronger
    Iamstronger Member Posts: 378
    edited August 2010

    I am a mom of young kids-2 yr old and a 3 yr old.  For me, I needed to know that I have done everything possible to be around for my boys.  You are young and her2+, typically that means aggressive.  

    I know that options can make it kind of tough. I didn't have an option with chemo, but I was borderline for rads and I decided to do it all.  I don't want this cancer to come back and kick myself for not having done everything I could.  GL on your decision.

    V

  • bluedasher
    bluedasher Member Posts: 1,203
    edited August 2010

    Swimangle, the study usually cited as the basis of Herceptin being effective after "any" chemo really wasn't that broad. It had to be at least 4 cycles of an approved chemo regime. About 94% of the patients in the study had a chemo that included an anthracycline (e.g. Adriamycin). 26% received an anthracyline plus taxane. 6% received neither anthracycline nor taxane. (Apparently none received a taxane without an anthracycline therapy like TCH.)

    6% was about 200 participants divided amongst the 3 arms of the survey - a pretty small group to get definitve results.

    While intuitively I think it is likely that Herceptin will improve results when used with any chemo, it is stretching the results to say that it has been proved. 

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited August 2010
    Bluedasher - I'm not sure if you are citing the same study as my oncologist did. Unfortunately I can't remember the name of the study - but he was very clear that for early stage Her2+ breast cancer, Herceptin works with any chemo. I asked three other oncologists if my onc was telling me the truth and they all agreed - thus I am comfortable repeating this information for women who are so terrified of chemo that they would rather do NOTHING. It's definitely a question that women should ask their oncologists - and then to get a second or third opinion.
  • bluedasher
    bluedasher Member Posts: 1,203
    edited August 2010

    Swimangel, I know that it is widely said and using Herceptin following any chemo is on label because of the HERA study. However, when I look at the study as an engineer with a reasonable amount of training in experimental method and analysis of results, they really didn't test that. What HERA largely tested was any chemo that included an antharcyline. There were only about 200 of the 3000 in the study who had a chemo that didn't include one and that doesn't seem a large enough group to get a significant result.

    They also were not testing whether any of those chemos produced better results overall than the other. The focus was on whether the group that got Herceptin dd better than the group that didn't.

    Note that I'm not saying that the only good chemos for HER2+ include an anthracycline. We know of one, TCH, that was tested and produces very comparable results to TCH. And TH is now being tested for very early stage HER2+ cancer. It is just that the only regimens on which I've seen significant test results are TCH and anthracycline based ones.

  • swimangel72
    swimangel72 Member Posts: 1,989
    edited August 2010

    Thanks Blue for your explanation - I'm sure you are correct in your analysis - but as my onc (and others told me) - oncology is not just a science, it's also an art - there's a lot of flexibility available given individual patients' dx's. My onc really believed that my tumor would respond to the Herceptin with a light chemo especially since my Oncotype DX score was in the low-intermediate range (22). I was angry at first that I found out after my mx that I'd still need chemo (because my BS dropped the ball and forgot to get the results of my FISH report) - but in a way it was a blessing because my onc had ordered the Oncotype DX prior to knowing my Her2 status. Originally, thinking I was Her2- he was advising against chemo since the tumor was so small and only Grade 1 - he was actually shocked it was Her2+ - and sent it out to another lab for a separate FISH which came back even more highly Her2+..............anyway, not to distract from Michelle's questions and concerns - this is all behind me now (forever I hope) - I just wanted to clarify why my onc gave me a light chemo and to give women the hope of other options besides the heavy-duty chemo.

    Michelle - I'm praying that you'll get to the right decision for YOU - hang in there - be tenancious and get a 2nd or 3rd opinion - and then you'll feel comfortable with your final decision.

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited August 2010

    Bluedasher and Swimangel72, excellent discussion.  thank you!

  • worldwatcher
    worldwatcher Member Posts: 205
    edited August 2010

    So, I have a question. How can a pre-surgery HER2 score of "equivocal" 2.7 go to a FISH score of 10? Isn't 10 about the highest? 

  • Drim
    Drim Member Posts: 302
    edited August 2010

    Hi worldwatcher- I know this is a little off topic but I had a lot of conflicting HER2 information. My initial IHC score was equivocal. The ball was then dropped and eventually the sample was sent out for FISH. The results came back highly positive (although not as high as yours). I then asked them to test the tumor from the lumpectomy which came back negative. Like swimangel, at that point I was eligible for OncoType Dx and mine came back 19 (and HER2- but very borderline). Interestingly my tumor was also grade 1 like swimangel's.  With all of this conflicting information they decided to send out the tumor to be dissected and thoroughly analyzed and the end result was that while a lot of the tumor was not HER2- there was a portion of the tumor which clearly showed amplification. They call this a heterogeneous tumor.

    Of course with any signs of HER2+ they wanted to give my herceptin and the chemo 'light' my oncologist and I felt comfortable with was TCx4.

    I also wanted to thank bluedasher for all of her interesting and thought provoking information. I wish I was as articulate and knowledgeable as you are.

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