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Why Im Not Doing Chemo

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  • barbiecorn
    barbiecorn Member Posts: 86
    edited February 2012
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    SpecialK - Chemo because my cancer was 2.2 instead of 2 or under.  Not a very high indicator of chemo - there were fragments of invasion in the 2.2.  Has this been proven that it is ineffective after 12 weeks from surgery?  I am going to google that.

  • sweetbean
    sweetbean Member Posts: 433
    edited February 2012
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    Barbiecorn, where were you in your menstrual cycle when you had your surgery?  Before the midway point or after?  It's important - recent studies have shown that Hormone positive women have more recurrences if they have surgery before the halfway point of their cycle. 

  • Luna5
    Luna5 Member Posts: 532
    edited February 2012
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    voraciousreader, I am not confusing anything.  I am simply saying that when the oncologist uses the study to say Tamox reduces my risk 50% ... I prefer to see it as improving it 1 out of 100.  I'm not here to argue the pros and cons of Tamox as I made my choice a long time ago.  I was just hoping there was a more recent study of its benefits for those choosing now.

    My OncotypeDX report assumes Tamox for 5 yrs and says my local 10 yr recurrence would be 0 and my 10 yr distant recurrence rate is 3%. 

    I spoke with the Oncotype people by phone while awaiting the results and considering the AIs my oncologist had recommended at that point.  The man who was explaining the test to me said that the test was based on Tamox because it was devised with testing on Tamox before there were AIs.  He said my risk of recurrence would probably be less on AIs than on Tamox but they had not done those tests.  So, I don't know my risk of recurrence not taking Tamox but lowering my estradiol and estrone through natural aromatase inhibitors. 

  • Luna5
    Luna5 Member Posts: 532
    edited February 2012
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    barbiecorn...I had the same problem.  My oncologist said I had to decide to do the chemo within 12 weeks, but fought me for so long before relenting and letting me have the OncotypeDX test that by the time the results came back 3 weeks after the tissue samples were received...my window of 12 weeks was basically over.

  • specialk
    specialk Member Posts: 9,227
    edited February 2012
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    barbiecorn - here is an excerpt from an article cited in Journal Watch:

    Researchers now report on a retrospective population-based study from the British Columbia Cancer Agency, in which survival was analyzed among 2594 patients with early-stage breast cancer, based on the length of time from definitive surgery to initiation of adjuvant chemotherapy (≤4 weeks, >4 to 8 weeks, >8 to 12 weeks, or >12 to 24 weeks). This study, conducted from 1989 through 1998, included patients who received adjuvant chemotherapy for stage I or II breast cancer; median follow-up was 6.2 years. Relapse-free survival (RFS) and overall survival (OS) were similar for women who started chemotherapy as long as 12 weeks after surgery; however, delays beyond 12 weeks resulted in compromised RFS and a statistically inferior OS.

  • sweetbean
    sweetbean Member Posts: 433
    edited February 2012
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    Thanks SpecialK - glad you found this info. Barbiecorn, if you want to delay chemo for your daughter's wedding, that is your right, but you should know it's a big risk with Her2+ cancer.  Usually if someone posts here that they are averse to doing chemo for medical reasons, I don't try to change their minds.  But for you, who are making this decision on more cosmetic/social grounds, I want to urge you to really stop and think about this very carefully.  I know that it would completely suck to be doing chemo during your daughter's wedding, but what would suck more is to delay chemo and then have progression to metastatic disease.   

  • Bluebird-DE
    Bluebird-DE Member Posts: 1,233
    edited February 2012
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    While not doing chemo - which I too am not for now - there are many other choices.  I started my treatment, alternatively speaking, from day one.  Gentle blazing arrows aiming at cancer cells one way or another.  This is the alternative forum, so you will find many discussions on what others aree doing while not tdoing chemo, and while they do chemo (complementary/alternative). 

    What I am saying is, I respect your choice, invasive bc or not, chemo and rads or not.... but I encourage you not to take a pause in dealing with this.  Always always be doing something to not give it any ground.  And believe it, there is much to do.

  • lucy88
    lucy88 Member Posts: 100
    edited February 2012
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    It's unfair to dismiss Barbiecorn's reasons as social and/or cosmetic. She feels strongly about it and that's what counts. Period. We need to respect her concerns. Also, I don't see any measurable life or death specifics in the chemo time frame reporting. I would want to see this documented before proceeding with further discussion.

  • 1Athena1
    1Athena1 Member Posts: 672
    edited February 2012
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    Barbicorn would need to see data regarding in situ cancer - LCIS specifically. There is also the issue of whether she wants to take Herceptin, and whether she wants to do it with or without chemo.

    Barbiecorn, I hope no doctor tells you, with a straight face, that postponing chemo by a few weeks will, literally, risk killing you. If you had advanced stage cancer I would understand, but LCIS... I'd get several opinions if you are that torn.

    Personally, I think your concerns about the wedding are perfectly understandable. One thing cancer should teach us it to live the present in the best way we can. Good luck with your decisions and, above all, make sure they are yours and yours only.

  • barbiecorn
    barbiecorn Member Posts: 86
    edited February 2012
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    Thank you ladies for all your concerns.  The research in anything changes over time.  No one really knows whether or not delaying any treatment by 5 weeks will make a difference.  I will be talking personally to a woman younger than me (btw I am 66 yrs. old) post-menapausal - She did treatment as suggested and had a recurrence anyway.  There are no guarantees in life.  There isn't any guarantee that I won't be hit by a car or get a heart attack tomorrow and not make my daughter's wedding at all.  For me, it is quality of life.  This time of my daughter's shower in April and wedding is June is far more important to me than giving me a 2% or 1.4% or 5% (all found by my researching) better chance that my bc will not return.  If the percentages were higher - like 50% or above - I would rethink waiting for any treatment until after my daughter's wedding.  This time in my life will never come again for me and I want to enjoy it to the fullest,which I intend to do. I do appreciate all of your concern, but I have made up my mind already - no treatment until after June wedding, if I do anything at all.  I am already doing the holistic way as we speak and getting lots of information regarding diet, etc. foods to avoid, etc.  I know my mid-section belly fat which I am losing already because of my diet is a high indicator of making estrogen in my body which is what my 2.2 cm cancer was 97% made of.  I am learning more and more everyday and through these boards...thank you all for your input....I respect each and every one of you....((((hugs))))

  • 1Athena1
    1Athena1 Member Posts: 672
    edited February 2012
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    Well, Godspeed, and I hope your daughter has a wonderful wedding! These are very personal choices and I think I would do the same were I in your shoes. I know my mother would too, BTW!

  • barbiecorn
    barbiecorn Member Posts: 86
    edited February 2012
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    Thank you Athena (((hugs)))

  • barbiecorn
    barbiecorn Member Posts: 86
    edited February 2012
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    ((((hugs)))) to all of you ladies!!!

  • sweetbean
    sweetbean Member Posts: 433
    edited February 2012
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    I wasn't being dismissive - her concerns ARE social/cosmetic, but if they are that important, then that's a factor.  It's her choice.  

    I'm also not certain I understand her diagnosis- one minute it's LCIS, another it's ILC.  Invasive vs. non-invasive does make a difference.   However, this is not my concern. 

  • barbiecorn
    barbiecorn Member Posts: 86
    edited February 2012
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    Mine is ILC - 2.2 cm stage 2a - grade 2 - the LCIS was a typo.  This thread is under "Why I am Not doing Chemo" - which is why I posted on this thread in the first place.  Thank you all for your input!!  and thank you Essa and Lucy!!!!! (((hugs))))

  • Michele2013
    Michele2013 Member Posts: 232
    edited December 2015
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    bumping to see if someone has cardiomyopathy. I felt I was being pushed to do chemo. This is bs! Cardiomyopathy injection fraction in 2013 was 50 (normal range is 55-75, slight weakness. two weeks ago it is 30-35.

    Thank you

  • motheroffoursons
    motheroffoursons Member Posts: 80
    edited December 2015
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    By the way, Hindsfeet who started this thread currently has multiple brain mets and other tumors. She needs your prayers.

  • Michele2013
    Michele2013 Member Posts: 232
    edited December 2015
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    Thank you for letting me know about Hindsfeet. I will pray for her.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,858
    edited December 2015
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    motherofoursons,

    If you are in touch with hindsfeet, will you let her know that I am thinking of her ? She was one of the first women I remember when joining bco in 2011 (she had a different screen name at the time)

  • Whirlwynde
    Whirlwynde Member Posts: 2
    edited December 2015
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    Hi all,

    So glad I found this place!

    Diagnosed in October, still in the process my research. Waiting for oncotype results (particularly important as I'm an adoptee with no genetic background data), but likely recommendation will be Rad + AI according to first visit with oncologist (grade 3 is not clear; both estrogen & progesterone receptive but there seems to be some uncertainty about comedonecrosis - hope I spelled that correctly). Originally they were calling it grade 2, the decision to go fully alternative didn't seem unwise. If it's truly grade 3, I may rethink. I've also scheduling bone density and vitamin D tests before making Western medical treatment decisions.

    I was diagnosed at age 58, a good 17 years into a remarkably easy menopause (NOW I know that hot flashes would have been preferable, as they may indicate some level of bc protection). Right after the lumpectomy, I started having wicked hot flashes 3-5/day plus night sweats, when previously I had no hot flashes and minimal night sweats. AI can increase these, I hear, along with other unpleasant side effects. Yikes! (I'm hoping this recent propensity for flashing means estrogen levels are dropping!) Plus, at my age, AI is less effective, according to studies I've seen.

    Right now, I'm taking Chaga mushroom (tea), follow a mostly whole foods, low sugar diet, and plan to start a Rick Simpson Oil protocol next week. (I'm lucky to live in AZ and now have a medical marijuana card). I haven't written off Rad/AI, but I would love to hear from women who chose alternative only and have long survivorship.

    I'd write more details but it will need to wait; it's 3 am and I've gotta get some sleep!

    In gratitude,

    Nikki Anam Cara (call me Nik)