Anyone chose not to do Chemo?

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kalimata
kalimata Member Posts: 2
edited June 2014 in Stage I Breast Cancer

I was diagnosed with Grade 1 breast cancer recently and last week I underwent lumpectomy and axillary node surgery. The tumor was 1.2 cms and diagnosed as invasive lobular carcinoma and 1 of the 27 nodes removed showed up with cancer cells. My ER/PRs tested very positive and HER2- negative.I am 50 and premenopausal. My onco has charted out what seems to be the standard course of action. 6 sessions of Chemo ("TAC" regimen) followed by 5 weeks of radiation and then 5+ years of Tamoxifen. So far everything I've been through and what lies ahead for the next 8 months sounds brutal and violently toxic. My instinct is to not undergo chemo therapy, not just out of fear of side effects but because it seems so against life itself! Anyone out there has a similar diagnosis and has chosen not to do Chemo??

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  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2011

    Kalimata ~ Welcome to BCO!  Have you had the Oncotype-DX test?  If so, what was your score?  If you haven't had it, you need to find a different onc, or at least get a second opinion ASAP.  The Oncotype-DX is needed to determine the benefit of chemo to you.  It's a test that's done on a bit of the tumor itself, which gets sent to an outside lab that analyzes over 20 genetic factors to determine if chemo is more a benefit or a risk to your particular bc.  Originally, it was not used for node-positive bc, but that changed a couple of years ago.  It's an extremely important tool and the results far outweigh an onc's personal preferenes based on experience, etc.  

    Good luck, and please keep us posted on your situation!    Deanna 

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited April 2011

    I would ask for the Oncotype test.

  • amoccia53160
    amoccia53160 Member Posts: 57
    edited April 2011

    Chemo is doable.  It is rough but with nodal involvement chemo is strongly recommended.  My onc wouldn't even do an oncotype because of one positive node.  Kick cancers ass and have the chemo.  It will give you peace of mind later on.

  • rianne2580
    rianne2580 Member Posts: 191
    edited April 2011

    Hi Kalimata,

    I agree with you. I will refuse chemo, although my tissue is at Oncotype DX as we speak and I had a micromets in my SN. I will also refuse rads. The BS took my breast with the very strong feeling I had lots of cancer cells in my breast because I was DX in 1994 and only had a lumpectomy, nothing else was done. Well she was wrong. I had one 4mm IDC and a small DCIS. My 2nd opinion, Johns Hopkins, said I only had a microinvasion of IDC.  So breast gone, I'm done. I know more cancer cells may exist, but no other place in the body is scrutinized as much as the breast. Who gets mammograms on the liver, kidney, lungs etc. They rarely do CT scans unless it's absolutely needed. I'm not in the medical field, but I know plenty of docs outside of my treatment. You'd be surprised what they say behind closed doors.

  • poptart
    poptart Member Posts: 101
    edited April 2011

    Who gets mammograms on the liver, kidney, lungs etc.

    I have never heard of a kidney mammogram.

  • rianne2580
    rianne2580 Member Posts: 191
    edited April 2011

    Just giving an example. I don't know of any part of the body more tested than the breast, unless you have severe symptoms. Who gets tested yearly for lungs, kidneys or liver? And the pancreas is truly deadly, but they don't find that cancer until it's way too late.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2011

    Rianne2580 - that is the whole point of mammograms - that we can detect cancer at an early stage because you're right, with internal organs symptoms occur often at a late stage.  I'm not exactly sure what you meant by that...as I was stage 1, no nodes my doc said that no PET scan.

    Kalimata - Oncotype will really help your decision.  Most likely thousands of women have confidentally opted out of chemo with low oncotype scores. 

  • mdg
    mdg Member Posts: 3,571
    edited April 2011

    I had to decide on chemo as I was in a gray area.  I was scared but I have completed 3 of 4 sessions and feel really good.  I used cold caps to keep my hair...no one knows I am going through chemo unless I tell them. I would have your doc do oncotype test and review adjuvent online test too.  It will tell you the probability of recurrence.  That information may be helpful to you in making this decision. 

  • Cyndi2304
    Cyndi2304 Member Posts: 4
    edited April 2011

    I went without Chemo. My oncotype-DX test showed I would only have marginal success with Chemo. So they left it up to me. I had radiation, lumpectomy, Tamox for 5 years, and now I'm doing Herceptin treatments for a year. Check into Herceptin for Stage 1 or 2/without chemo.  Alot of research out there on it.

  • bdavis
    bdavis Member Posts: 6,201
    edited April 2011

    I didn't have Oncotype test.. My MO wanted me in chemo regardless because of my one micromet node... I agreed and I don't regret it... Chemo has been easy... and I only have one more left.

    For me, the fact that the cancer travelled to the node means it could have escaped and gone elsewhere... without chemo my odds of recurrance 9all other things equal) would be about 15% higher... for a systemic (non-treatable) recurrance. Those are stats i am not interested in dealing with. I too am premenapausal, 48 years old, 1.9cm... had lump. but skipping rads and having MX instead... without rads and chemo my odds of recurrance would be up near 50%... with chemo and rads it drops to 25% and with MX instead of rads it drops to 12%... much better than 50%.

  • pp729
    pp729 Member Posts: 135
    edited May 2011

    Kalimata -- your question caught my eye as my mom is considering not doing chemo.  Infiltrating ductal carcinoma -- ER+/PR+/HER2-.  Taking Anastrozole for a couple months.  Unilateral mastectomy a week or so ago and path report was clear -- no additional tumors and lymph nodes clear.  Her Oncotype score, however, was high at 36 so the initial recommendation was for chemo.  Now wondering since the path report was so good and there is no indication of additional cancer if chemo is necessary?  Any insight will be helpful

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited May 2011

    Pp729... Perhaps your mom should have a second opinion. Usually will a high oncotype score, chemo is recommended, unless there are other medical issues. 36 is a high number and there should be a healthy discussion favoring chemo. Good luck. Prayers for your mom and thoughts as well

  • lindylounz
    lindylounz Member Posts: 23
    edited May 2011

    Hi Kalimata, I live in New Zealand. My diagnosis was very similar to yours, except I had high grade DCIS (6cms) and 1.2cm IDC, ER + PR +ve, HER2 neg. I had a mastectomy and sentinel node biopsy with isolated tumour cells found in 1xnode. I am premenopausal. My oncologist said I was in the 'grey area' that they don't treat with chemotherapy. I did masses of research on the isolated tumour cells and micromets found in nodes and basically the latest research is that treating with chemo does not decrease the risk of recurrence significantly. We don't have the Oncotype test here so don't have that further backup info. I have had to let go of the worry about being in a 'grey area' and move on with my life. You really have to know what you need for yourself to enable you to move on. For some that means having  the chemo to reduce any risk, and others not. Good luck with your decision. Breast Cancer certainly teaches you to know thyself!

  • kira1234
    kira1234 Member Posts: 3,091
    edited May 2011

    Pp729, Your moms kl-67 is 80%? The kl-67 score has to do with how quickly the cells are dividing. If I remember anything over 10-15% is considered high. She is also a grade 3 with lymphatic involvement. I'm sure these are all factors that lead the Dr's to suggest she should have chemo.

    I totally understand her worries about starting chemo. It is always a hard decision. Things to conider are her age, and her general health. Her Dr's should be working with her to help her decide which chemo would be best for her with all those issues being considered. I know at least in my case my Onc. didn't consider health, other treatments ect. which really should have been considered before hand.

  • pp729
    pp729 Member Posts: 135
    edited May 2011

    Kira1234 and Voraciusreader:  Yes, you are correct.  For my mom, she has both a high KI67 and Oncotype score which suggests that chemo is needed.  However, I think she is being lulled into a sense of security because in the 3 month period from the time she was diagnosed with IDC, had additional tests, got a second opinion, etc and finally had the mastectomy, there is no evidence that the cancer spread anywhere.  In addition, she has some other health issues that could come into play.  We will see the Onc again in a few weeks to get his post-surgery recommendation.  Thanks for your insight.

  • kalimata
    kalimata Member Posts: 2
    edited May 2011

    Thank you for all your replies. I have been talking to people who have gone through chemo and say it is not as bad as it used to be. It greatly reduces the chance of spread or recurrence and I am beginning to brace myself for it and feel less mortified. It's a tough choice but like so many of you out there, I have a lot to live for and am not sure if the option to not do chemo puts me at great risk to not enjoy the opportunity to survive! I intend asking my MO about the OncoDX test but am not sure it's available in India. I still have 10 days to go before they 1st scheduled chemo....

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