Is this my final answer?

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cookiegal
cookiegal Member Posts: 3,296
edited June 2014 in Stage I Breast Cancer

So in the past few months I have been consumed by the chemo decision.

I have googled oncotype a gazillion times, read books on chemo brain, slogged though
SWOG 8814, had my ex do spreadsheets. I have flip flopped, and spent time trying to live with both decisions.

I have had consults with 2 specialists, spoken to 2 shrinks, even tried to find religion, and flipped a few coins.

I have perused every scrap of information on this site, paid 32 dollars to read a journal article, and called geonomic health several times.

I have gotten wonderful help on this site, Ivorymom, and Aprilgirl, and Virginina-London, to name a few, plus my gtg friends like flash and hipchick and deb.

Now I have to think for my self.

Tommorow is my oncologist appointment. I have set it as a deadline. If I don't do chemo I have my rads simulation on the 17th.

So I am leaning hard towards no chemo. I wonder if I am just a coward or maybe I am brave. I know I am taking a risk, but I think I am doing it for good reasons.

I don't take the prospect of stage 4 lightly. I think about what the ladies on here go though every day, and that more than anything gives me doubt.

But when I look at the charts, the benefit just doesn't seem worth the risk for my situation. At this point, my only reason to change my mind is fear. 

If my doctor thought chemo was imperative, he would not have given me a choice.
So now I am chosing.

So wish me luck tomorrow. Who knows, I have 11 hours to change my mind again.

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Cookie - I so know the flip flopping.  It's awful!

    You have done very thorough research - amazing research.  There just is no great answer for those of us in the middle.  As thankful as I am for the oncotype with the attempt at personalizing treatment, the dreaded intermediate zone bites.

    I applaud your choice, and you do not need me to wish you luck, but I will!

    Im proud of you, and your decision.

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009
  • Luah
    Luah Member Posts: 1,541
    edited December 2009

    You sound like me -- research like hell and flip-flop a thousand times... drives my Type A driver-driver husband crazy!

    In the end, you gotta go with your gut - and don't look back!  

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009

    thanks luah

    Looking forward to not looking back!

  • revkat
    revkat Member Posts: 763
    edited December 2009

    I don't know your whole story, or diagnosis, so I can't weigh in on whether or not you should have chemo, but one thing that helped me when I was in the decision making phase, was the person who said, "You have to make the decision based on what you know right now. There may very well be a research study that will give you different information in another 6 month or year, but you have to decide now. So make the best decision you can and they move ahead." It helped a lot, because 2 years ago I couldn't get an oncotype with a postive node, yet I KNEW they were moving in that direction and I just wanted that one more piece of information sooooo badly.

    You know what you can know at this point in time. No one can ever say you made the decision lightly! And if things change in the future, well, they change. You have to live in the now. 

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009

    oh rev, I know how badly you wanted that oncotype. My surgeon said with a positive node I wouldn't have it, but I did. 22.

    If I were a 20 or below my doctor would have said no chemo. Sigh.

    Funny thing is genonmic's rep says patients with 1-3 nodes have very similar survival rates to node negative.

    Time to shower and get dressed!

  • Kathy044
    Kathy044 Member Posts: 433
    edited December 2009

    I just wanted to thank you again for the discussion over whether or not to do chemo. It helped me to focus my thoughts in making my own decision. Today I had the appointment with my ONC and I decided --  it's only four months, I'm healthy, so yes I'll do it. There really isn't yet enough information known about the benefits of chemo for women with ILC or for women of my age group, 65 and older, in threshold cases,  with or without an RS to go by.

    My first chemo session is Fri Dec 18th. 

  • Luah
    Luah Member Posts: 1,541
    edited December 2009

    Kathy, doesn't it feel good to crystallize your thoughts and move forward? Good luck with the chemo. Wishing you minimal side effects...

    cookiegal:  how was your meeting? Been thinking about you... and wishing you well, no matter where the journey takes you next!

  • Luah
    Luah Member Posts: 1,541
    edited December 2009

    Kathy, doesn't it feel good to crystallize your thoughts and move forward? Good luck with the chemo. Wishing you minimal side effects...

    cookiegal:  how was your meeting? Been thinking about you... and wishing you well, no matter where the journey takes you next!

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009

     Kathy, good luck and thank you for all your help! I am so glad my process was helpful to someone else!

     I went to my appointment 99 percent settled on no chemo, everyone was fine, then my husband started asking onc questions, and all of a sudden it was back open for debate. To make a long story short, he wanted me to speak with/or see one other specialist. So that's what I did.

     I really tried long and hard to live with chosing chemo. But by the middle of the day today I was back to no. I have some possible risk factors for se's that are not the norm. Plus for me the benefit is 2-4 percent. So after speaking with everyone I can think of, I decided for me, the risks outweigh the benefits.

      If I had kids, or different priorities, or a different medical history, I might make a different choice. It is certainly possible I made the wrong choice and will face consequences. 

    But tonight I have something I have not had in months, peace. I know in my heart I made the right choice for me, and did the best I could.

    My rads simulation is tomorrow, so wish me luck. 

    Good night and good luck all!

  • wallycat
    wallycat Member Posts: 3,227
    edited December 2009

    My onc said if the benefit was 4% or less, chemo should be off the table.

    with standard chemo, I would have gotten 3.5-4% benefit; he said the main reason Europe was doing so much chemo is to kill the ovaries.

    Perhaps if you speak to the ovary situation, it may crystalize your decision.

    Lupron (if you are still pre-meno) and if you are ER/PR positive, a hormonal.....

    My onc said most of the benefit was in killing off the ovaries with chemo but I am so close to menopause (not sure if I am in it or not...no periods since tamoxifen to speak of).

    I still wonder if my decision was correct (my onco score was 20) but can't look back now.

    There will always be someone who showed doing chemo helped, someone who did no chemo had no reccurence, and the opposite.....

    Best to you!

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009

    Hey wally cat, sounds like you have a smart onc. I love Wisconsin, used to live in Ashwaubenon.

    Had rads simulation today, my friend who works at the hospital said she did not want to influence my decision, but now that it's made, says she would have done the same thing.

    Plus I am now a tatoo'ed lady!

  • Luah
    Luah Member Posts: 1,541
    edited December 2009

    wallycat: "killing off the ovaries?| very confused by that remark and the slur about Europe.  What did he mean?  Chemo kills cancer cells, and is highly effective in post menopausal women without active ovaries - it really depends on the patient, cancer profile etc.   Maybe I'm misunderstanding something.

     Cookiegal:  Glad you made your decision and feel at peace!

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009

    Listen I have total respect for anyone's choice. Mine was right for me.

    I will say I was surprised at some of the charts in the oncotype report for node positive.

    It is a small study, so take it with a grain of salt, but for low oncotype even with nodes, the chemo benefit is not apparent.

    For high RS it is a whole different story. The chemo benefit is strong.

    At the low end of the grey zone, it's really grey. It looks like chemo benefits 21 and over.

    My only advice would be push for the test even if you are node positive.

  • revkat
    revkat Member Posts: 763
    edited December 2009

    Luah, there are some oncologists who think that the primary benefit of chemotherapy for ER+ premenopausal patients is that it often shuts down the ovaries. I was under the impression that in Europe less chemo is used because they use other methods of ovarian ablation -- surgery, lupron, radiation. Someone from Europe (a large place so I imagine there is variation!) chime in. Under the St. Galleon guidelines (which are European) it was not clear that I would need chemo. Under the NCCN guidelines I was a definite yes for chemo.

  • Luah
    Luah Member Posts: 1,541
    edited December 2009

    Thanks revkat, that helps.  And I too would be surprised if chemo is used more in Europe...

    cookiegal: totally agree, chemo benefits are all over the map, everyone has to make their own choice. I would have spent the $$ on the test (from canada), but then my path came up trip neg - so that ruled out oncotype and ruled in chemo.  

  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009

    Luah, there was a link I posted about that issue.

    If the test helps avoid chemo, it saves the system a lot of money. I don't get it.

    I have gotten a few comments of support from people who wanted me to make up my own mind, but are happy for my decision.

    Now they need to get to work on drugs that prevent progression!

    I was also bowled over by the latest news about weight and recurrance. I could loose a few.

    I am going to try to get a few pt's in to restore my range of motion, and then get back to the gym.

    Also find some good cauliflower dishes.

    Have a great weekend and holiday one and all! 

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