I am so confused!

MomMichelle
MomMichelle Member Posts: 93
edited March 2014 in Breast Cancer #1
I am almost six weeks out from mastectomy surgery and I am still trying to decide treatment. 1st opinion said I could do chemo for 2% better odds or not do it. 2nd opinion said definitely chemo. 3rd opinion said no to chemo. Size of single focus invasion is 4mm. Stage 1 T1a. Extensive DCIS. No lymph node involvement or vascular involvement identified. DCIS is triple positive, invasion is ER-, PR slightly +, and HER2 very positive. Not enough sample to perform Oncotype testing. Genetic testing came back clear. I am 36 with two kids (3 and 5). One doctor recommended TCH, the other recommended ATCH. The one recommending TCH said that they would not recommend A regimine because of the possible consequences to the heart for such a little area of invasive cancer. Not even sure chemo is worth it. I have no idea what to do. I am afraid of the side affects from chemo, but I am also afraid that I could be treating something that is most likely not there anymore (but if it came back I would regret not doing chemo). I hate being in this gray area where no one agrees how to treat me. I know I would love to say to heck with chemo and just do tamoxifen, but what if it comes back? Anyone out there in a similiar situation? I am also worried about delay in treatment. Till I start anything I will probably be 8 weeks out...is that too long? Please give any info or insights. I am just spinning my wheels...........................

Comments

  • mimivac
    mimivac Member Posts: 2,143 Member
    #2
    HI
    It's a hard decision for sure and you are getting different opinions, so I know it's not easy. Here are some of the reasons for doing chemo: you are young (cancer is more aggressive the younger you are); you have HER positive invasive and non-invasive cancer; you have extensive DCIS. Reasons to skip chemo include: you have a very small area of invasive cancer; chemo will only reduce your chances of recurrence by a small percentage; chemo has side effects, some of which could be serious. I'm wondering if you can just do Herceptin? It's not chemo, but a targeted agent to get the overexpression of the HER2/neu gene. Maybe just Herceptin and Tamoxifen afterwards? Maybe even a fourth opinion is called for?! Have you been seen at a major cancer center yet? Or by an oncologist who specializes in young women with breast cancer? Our disease can be different and require more aggressive measures. Remember that the best chance for a cure is right off the bat. Good luck!

    Mimi
  • Rague
    Rague Member Posts: 3,653 Member
    #3
    So called "odds" mean
    So called "odds" mean nothing to me. I'm IBC (currently 'riding' NED) which means long term prognosis is not great. BUT to me, it comes down to either 0% or 100%. Either will have a reoccurance (100%) somewhere/sometime in my body or I won't (0%). I'm not 1 of 100 - I am 'me, myself and I'. I have done everything any of my Drs. wanted me to do to fight and IF in the future, I have to fight again - I'm ready.

    Susan
  • cahjah75
    cahjah75 Member Posts: 2,631
    #4
    I told my oncologist I would do whatever it took to reduce risk.
    Michelle, I had bilateral mastectomy June 22. I'm the 5th in my family with bc. I had ILC 6.1cm in right breast and LCIS in left breast. I had clean margins and no lymph node involvement. I had the BRCA gene test done and I was negative. Yet, the oncologist told me my chance of recurrence was 20% and that is too high in my book. I start chemo Aug 10 and if later I'm told I need rads I'll do that too. I'm 61 and plan on living as long as I can for my grandchildren ages 0-6. Good luck with your decision.
    Char
  • survives
    survives Member Posts: 254 Member
    #5
    cahjah75 said:

    I told my oncologist I would do whatever it took to reduce risk.
    Michelle, I had bilateral mastectomy June 22. I'm the 5th in my family with bc. I had ILC 6.1cm in right breast and LCIS in left breast. I had clean margins and no lymph node involvement. I had the BRCA gene test done and I was negative. Yet, the oncologist told me my chance of recurrence was 20% and that is too high in my book. I start chemo Aug 10 and if later I'm told I need rads I'll do that too. I'm 61 and plan on living as long as I can for my grandchildren ages 0-6. Good luck with your decision.
    Char

    I can see why the confusion!!
    Three opinions, three ideas. I had DCIS and IDC in one breast. Both of these tumors were tiny, 0.2mm, and 0.3mm, node neg., clear margins. I don't think they were checking for vascular involvment, because I can't find that in my path. report. Had two oncs., and both said "no" to chemo. The big difference here is age. And, since I am older than you, I didn't get chemo, no herceptin, but did get an AI. I agree with what someone said here, and that is because of your age, I'd lean a little more towards chemo. I really wanted HErceptin, but because I had a mastec. and no chemo, there was no Herceptin.

    8 weeks is not to late, your doctor will ask for your decision when it's time. Whatever decision you make, you can't look back. You'll drive yourself nuts....you have to know that YOUR treatment is right for you, and believe that you will once again be fine.

    Here's to hoping that you get your answers quickly.

    PS--SUSAN, I absolutely LOVE your attitude!! That's the picture I'm striving to paint!
  • 24242
    24242 Member Posts: 1,398 Member
    #6
    No Matter the Choice
    MomMichelle,
    There are no gaurantees but I do think that cancer is often the call we need to know what we were doing before wasn't working hence having cancer. Do I blame myself, No all I can do is try to take a good look at me and finally fill my world instead of others filling it for me. I had stage 3 HER triple negative and 11 out of 21 positive nodes and had to be very ill before anyone would even diagnostically check me. OH well that is all and yes treated with it all and just one big walking side effect now. 14 years later it doesn't get easier with new lumps I have had to deal with. Not so sure waiting and seeing with these ones sits well with me but spending all my energy on it I won't.
    Survival is truly what we make it and I am so grateful my life has been so much more than the hope the doctors gave me. A birthday is something that makes me realize how lucky I am and it is that simple now soon to be 50.
    My son and I are closer than we could have ever imagined and the possibility of grandchildren even there. Life doesn't seem to get any easier but the LOVE and LAUGHTER bigger than anything...
    Hang in there my friend and you too will be consumed by all that is good.
    Tara
  • Hubby
    Hubby Member Posts: 325
    #7
    Wish it was clearer for you.
    Wish it was clearer for you. As for the time, Donna's oncologist told her that most trials required starting within 12 weeks, so eight weeks (while probably longer than most oncs would want) would still qualify you for a study. Are they saying 2% better chance of survival or relapse? Your going to have to go with your gut; see which doctor you trust most and go with it.

    Of course you could always get a fourth opinion, but your going to drive yourself nuts.

    Good Luck with the decision.

    Bob
  • susie09
    susie09 Member Posts: 2,930
    #8
    mimivac said:

    HI
    It's a hard decision for sure and you are getting different opinions, so I know it's not easy. Here are some of the reasons for doing chemo: you are young (cancer is more aggressive the younger you are); you have HER positive invasive and non-invasive cancer; you have extensive DCIS. Reasons to skip chemo include: you have a very small area of invasive cancer; chemo will only reduce your chances of recurrence by a small percentage; chemo has side effects, some of which could be serious. I'm wondering if you can just do Herceptin? It's not chemo, but a targeted agent to get the overexpression of the HER2/neu gene. Maybe just Herceptin and Tamoxifen afterwards? Maybe even a fourth opinion is called for?! Have you been seen at a major cancer center yet? Or by an oncologist who specializes in young women with breast cancer? Our disease can be different and require more aggressive measures. Remember that the best chance for a cure is right off the bat. Good luck!

    Mimi

    It is a hard decision,
    It is a hard decision, especially, when you have different opinions. Mimi's post was very good in explaining some of the reasons for and some for not. Good luck on what you decide.

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