Has anyone decided against chemo?

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  • jrlegal
    jrlegal Member Posts: 27
    edited December 2009

    cookiegle: when do they do the oncotype test?

  • KEW
    KEW Member Posts: 745
    edited December 2009

    I opted out of chemo, but would have done it in a minute if I had been Her2+.  My Oncotype score was 15 and most doctors recommended against chemo, but one really pushed for it since I was 48 and two tumors combined measured 2.6cm.  I trusted my docs, Oncotype, my gut feeling, and didn't do it.  If my Oncotype had been higher, or as I said if I were Her2+ as scary as it would be, I would have done chemo.

    Jrlegal--I don't know what is "usual" but my Oncotype sample was sent out right after my BLM and it took about 3 weeks for it to return.  My BS ordered the test so my onc, who I hadn't yet met would have the results for our first meeting.

    Best--KEW 

  • cookiegal
    cookiegal Member Posts: 3,296
    edited January 2010

    funny question....I was telling the surgeon before my surgery, don't forget, send out the oncotype.

    Because I had one pos node he did not, and I had to wait for medical onc to do it, so it was probably 6 weeks after my surgery I found out.

  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited December 2009

    I don't think that how you feel physically is the best indicator as to the course of treatment.  My surgeon was very clear that if you wait to do something until you actually FEEL different physically, you are in a much more compromised position. Chemo is scary and the process isn't fun. But I just kept my eye on my goal, which was to eradicate this disease completely and live a long and healthy life. And now I am en route to doing so, and it feels WONDERFUL!

    Good luck to all and I wish you the wisdom and courage to make the best decision for yourself.

  • ElaineD
    ElaineD Member Posts: 2,265
    edited December 2009

    Amy has made the very point that I was going to add. Please note that I have metastaic disease. When diagnosed I had no symptoms whatsoever. I felt great. A very thorough gastroenterologist decided to send me for xrays (for a non-cancer problem). Shadows were found on my lung. Further investigations revealed that I had mets to the pleura, liver and bones. I will be on chemo for life-until the cancer or the side effects to the chemo kill me. But-I felt well long after the mets were found, so how you feel is no basis for making a decision. With your grading, you must take all the help that is offered-otherwise you will very likley be facing a much worse problem in the future.

  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited December 2009

    Elaine - I want to commend you for taking the time/effort involved to answer and share your experience. I wish you only good things in 2010.

    Ladies - please listen to what she says. She is qualified to address this in a very unique way and her words come with the insight borne by experience. We are privileged to have her input here.

    Amy

  • AL1841
    AL1841 Member Posts: 28
    edited January 2010

    Was just diagnosed with an Oncotype of 13.  had a double Mast. on 11/24/09, no nodes involved.  2 tumors (larges .7mm). Some slight evidence of Lymphatic invasion (whatever that means).  100% ER/PR+; Her2-. My oncologist is recommending CMF chemo (8 cycles over 6 mos) followed by Tamox.  A 2nd opinion suggests ovarian suppression injections into abdomen (1x/month for 2 yrs.) coupled with the Tamoxifen.

    I also have a mild form of Multiple Sclerosis, which adds a slight wrinkle.  With chemo, I get to go off weekly MS injection for the 6 months---that's a plus. Witth the hormonal treatments, I will need to continue with MS injections.

     Can't decide on which approach? Any advice?

  • sandy2009
    sandy2009 Member Posts: 106
    edited January 2010

    My Oncotype score was 14 and I am ER+/PR+, HER2- with no node involvement.   I had a left masectomy followed by reconstruction.   It was a very difficult decision - 2 Onco. Dr.s disagreed with me, but my Breast surgeon, 2 RNs, and a Radiation Dr. felt I made the right decision.   I feel Onco Dr.s push chemo.   I believe in my Onctotype number for low reoccurance.

    If this would have gone in my lymph nodes or I was HER+, I would have done Chemo.  You have to talk to many different people, read the discussion boards and be able to live with your decision.

    I am taking Arimidex for 5 years along with Zometa infusions (clinical trial).   Good luck with your decision, you'll be relieved once you make your mind up either way.

  • lizwt
    lizwt Member Posts: 1
    edited January 2010
     

    I haved wished and fantasized that I didn't have to do chemo, but I've never seriously thought of not doing it.  I would urge you to see if it is fear that is driving your consideration versus the true benefits/risks profile of doing chemo.  There are ways to cope with the side effects and meds that help and sometimes it is just enduring them.  I did find something that is helping me big time, I started doing accupuncture after my second cycle of 4 chemo treatments - it is amazing!  I have improved energy, less digestion problems and an overall improved feeling of relaxation in both mood and body.  For my next TC treatment next week, I am going to start the accupuncture on the day after chemo and see how that benefits me.   This is my second time doing chemo - my first was in 1996 (MF) and what I have now is a local recurrence.  Trust me, having to do it a second time was something I never thought I could handle.  I guess my point is that Chemo sucks, but it clearly improves prognosis and you will find methods of coping with a very scary and sucky thing, and even if you only barely cope and dread each treatment - it does end.  (I just wanted to add that my onco score was 27 and so Chemo was indicated.)

     
  • patlef
    patlef Member Posts: 2
    edited February 2010

    Yes!  Diagnosed in September 09.  The lump in my L-breast was bx as a malignant tumor.  I put off surgery until the day prior to Thanksgiving.  I was not comfortable with my surgeon so I waited for a 2nd opinion.  Surgery was a lumpectomy w/removal of all lymph nodes.  Out of the 16, five were malignant.  Doc told me I would need chemo (two drugs) by-weekly for months and then Taxol weekly for twelve weeks; followed by radiation & horomone tx.  I had all sorts of tests, brain scan; CT's; bone scans, blood work the gauntlet.  A PET scan was ordered by I cancelled it for financial reasons.  My first treatment was a disaster.  I felt so horrible I cancelled all the rest of the scheduled chemo treatments.  I didb't return to the oncologist until 1/27.  Actually I just went back out of respect and to have him sign off.  He convinced me to give it another try.  This time, Taxol for 12-weeks.  Day-1 post treatment went well but I have been downhill ever since.  I'm experiencing constant stabbing pain in different areas of my body.  I'm unable to sleep and again feel like qutting.  Its so hard for me to believe people actually commit to this poison.  Frankly that is how I now view it.  Is not getting treatment (that 50/50 plan) I'm told I fall into "statistics" or do these docs actually have insight of God's plan.

  • konakat
    konakat Member Posts: 6,085
    edited February 2010

    Patlef -- I too had a horrible time with taxol.  Let your onc know how bad your aches are and get a good painkiller.  I ended up taking oxycontin to dull the aches.  I encourage you to continue with the taxol to the end of 12 weeks.  Trust me, having mets is a whole lot worse than 12 weeks of Taxol.  Please don't take the risk.  Plan how you will celebrate the end of the 12 weeks instead.  Take care,

    Elizabeth

  • patlef
    patlef Member Posts: 2
    edited February 2010

    thanks for your response.  I see my oncologist today and follow with chemo.  I requested a nerve med, so as not to scare the nurses and a cream to use to numb my hand where they will stick.  Declined the mediport!  Will ask him today for something for pain, also something to help me sleep.  Not getting sleep makes me a bear.  I'm trying to hang in there. 

  • konakat
    konakat Member Posts: 6,085
    edited February 2010

    This is good Patlef -- whatever meds it takes to get through it.  When I first started chemo I tried to tough out the aches but eventually realized it's stupid to suffer when I didn't have to!  I declined the mediport for years -- only just got it and I love it.  But unless you're on chemo for a long time why bother?  Hang in there -- soon you will be able to celebrate it being all over.  One good thing about chemo is that my hair has always grown back in thick and soft -- nice since I used to have stringy thin hair.  Gotta grab those perks where you can!  Big hugs,

    Elizabeth

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