Am I crazy for wanting chemo???

Options
horsedoc
horsedoc Member Posts: 512

I am 37 years old with IDC, tumor was 3.3 cm, ER+/PR+, HER is 2+ which is equivocal. (not + or -)

I just got the OncotypeDX back and the number is 16.  That is the high limit of the "low risk" range.  I just got home from having a PET scan.  I talked to the onco today; she called to tell me the onco test results, but I couldn't get an appointment with her until next week.  Basically she said she would work with me either way as far as whether or not to do chemo.  I am anxiously awaiting my apointment.  

Meanwhile I am really confused.  My onco did say that the big concern in my case is my age and the size of the tumor.  The Oncotype test gives "predictions" for 10 years.  I understand it's because that's how far out the research is.  Well I'm just not comfortable with that.  I feel like feeling crappy from the chemo for 4 - 6 months is a small price to pay if it can help me live another 40 or so years.  

Has anyone out there dealt with a similar situation?  

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
  • FLtricia
    FLtricia Member Posts: 140
    edited March 2010

    My tumor was 1.5 cm IDC, ER+PR+ HER-. Age mid-fifties. I had a mastectomy.  My surgeon and oncologist initially said no chemo necessary.  Then my oncotype came back 23 (middle of intermediate).  That made chemo up to me. My oncologist said whatever I decided was o.k. with him.    They are now doing trials to see if there is a benefit for those with intermediate scores to have chemo.

    My family really wanted me to do chemo. They wanted me to throw everything at the cancer that was available.  I was on the fence until my surgeon asked me if I did not have chemo and had a recurrence, could I handle that with no regrets.  I could not.  I would have always wondered if I had done the chemo would the outcome have changed.

     Bottom line, I did the chemo. 

    That was my thought process.  You have to do what is right for you.  You will know what you have to do to give yourself as much peace as is possible in this  situation.  I wish you the best as you continue your journey.

  • Sparrow
    Sparrow Member Posts: 262
    edited March 2010

    Horsedoc, you are not crazy.  You have to decide what's best for you, what will give you peace of mind.  My OncotypeDX was 16 too.  I chose not to do chemo.  

    These decisions are so hard!  XOXO- Tamara 

  • friscosmom
    friscosmom Member Posts: 146
    edited March 2010

    Not crazy at all. When I started this whole crazy ride I went into surgery planning on a lumpectomy and radiation and being done. The thought of not having chemo scared me (well, so DID the thought of having it but...); I was afraid of not doing everything I could to increase my chances. As it turned out I had 1 positive lymph node so my decision was made for me. I still believe I would have pressed my onco for chemo had I not come back node positive. I'm not going to lie to you, chemo sucks with a capital S, I just completed #3 of 8 and I often wonder if I can make it through all 8. What keeps me going is knowing that I'm doing this for my life. There are no guarantees this will keep it away but I know if it does come back that I did everything possible at the time. 

  • ktym
    ktym Member Posts: 2,637
    edited March 2010

    horsedoc, no, you're not crazy.  The comment about could you live with regret is a good thought to ponder.  My score was high. I took the chemo.  A year ago today I went into the hospital and into the ICU and they weren't kidding when they asked if I wanted to be resuscitated if my heart stopped.  Now a year later I have residual neuropathy and weakness from neuropathy that has meant career changes.  Another women in "my group" has severe heart failure from the chemo that is life threatening.  They've given her a mortality estimate from her heart failure that is higher then she faces from cancer (and that she ever faced from the cancer). Faced with the same choices I'd do it again.  My score was high and the benefit many many times over higher then the risk.  I mention it only because the majority of what you hear on the boards is "its not a walk in the park, but it is doable."  There is a small but real mortality risk from chemo, and there is risk of long term disability. It is easy to forget some very sobering numbers regarding the downside of chemo.  Sometimes its not just 4 months out of your life and losing your hair.  Some of us lose a lot more.  Just make sure you and your Onc talk about the hard facts and leave the emotions aside for a bit.  At the end of the day you will make the decision with your gut about what is right for you, but its a good idea to make that an educated gut.

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

    What about CMF....it is a good option when you are in the grey zone, lower risk of major SE's. And 20-50% hair loss.

    BTW I did not do chemo with 22 and a node, but it was the hardest decision ever. Make sure you look at the charts that come with the report, and the curves for chemo benefit. Ask the office to print the report out for you.

    I think you are right to consider your age and tumor size. Do you know your KI67?

    Some low onco people have high KI 67, and they may be the ones who have a higher risk.

    Hope I helped.

    I think you are a really good candidate for a second opinion as well.

  • dash
    dash Member Posts: 766
    edited March 2010

    My sister in law had similar stats but is more than a decade older than you and her onc suggested chemo was important because of the size of the tumor. She had TC for 2.5 months. Some lingering neuropathy several years later but she did great on it and even jokingly 'accused' her onc of giving her a placebo.

  • horsedoc
    horsedoc Member Posts: 512
    edited March 2010

    Thanks so much everyone; it's nice to hear everyone's point of view. 

    My KI 67 was HIGH, which is another thing that concerns me.

    I really like my oncologist and will see how the next appointment goes.  I will not hesitate for a 2nd opinion if I'm not comfortable or still confused.

  • ThereIsHope
    ThereIsHope Member Posts: 62
    edited March 2010

    I agree... not at all crazy for wanting to "kick butt" and give yourself every chance possible to seek out any stray cancer cells and get rid of them!  My Oncotype score was 18 and I was very relieved that my surgeon and oncologist agreed with my approach.  Family history, age, current general health and that question "How would you feel if you had a recurrence and had not done chemo?" all helped me make a decision.  I am working through a bout with cellulitis of the right side of my "former breast area."  Once that is under control, I'll proceed with port placement and chemo.  Breasts GONE!  Uterus and ovaries GONE!  And, God willing, the chemo will help eliminate any further recurrence.  It is such a gut-level decision.  This is what I know is best for me... I will pray that you know what is best for you and you are at peace with your decision.  Let us know how you are doing!  Hugs...Karen

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2010

    Hi- I second the recommendation for CMF chemo.  I had a score of 23 - so higher than yours (in the gray zone) and was 44 years old at diagnosis.  CMF is very easy to tolerate (usually) and I had virtually no side effects.  Not that hair is the most important aspect of life, but hair loss is not a side effect of the chemo- a bit of hair thinning, but not enough on me to notice.

    I agree that your age and tumor size would make me a bit nervous and want more info, or possibly a second opinion.

  • lisa-e
    lisa-e Member Posts: 819
    edited March 2010

    I am older than you, Horsedoc, so my thinking may not apply to you.  I had two invasive tumors, one with an oncotype score of 16, the other with an onctoype score of 8.   I calculated that my chance of a recurrence, assuming 5 years of tamoxifen was slightly under 16%.  Chemo therapy might have decreased my chances of a recurrence by 2-4%.  As that was equal to the chance of having permanent side effects due to chemo, it was easy for me to decide against chemo.  

    My onc originally recommended chemo, but once he saw my calculations and understood my logic, he didn't argue with me. 

    I think you should understand the degree to which it will benefit you before making a decision, so you understand the benefits of chemo versus the risks, which as kmmd, are real and can be substantial.    Also, a second opinion could be a good idea.

  • Ezscriiibe
    Ezscriiibe Member Posts: 598
    edited March 2010

    I have to admit that I have a real problem with the position that one must understand the degree to which it will benefit.

    I think even a small "benefit" is worth the potential risks. There are serious risks to some of the diabetes medications I take, as well, including heart disease.

    But that's why each of us have to make our own decisions and go with our gut, which usually means, as was mentioned up-thread, can we live with this decision if we do get a recurrence later.

    For me, the issue of possible "recurrence" has already been answered before I even started my first infusion.

    My oncologist ordered a set of scans (head, chest, abdomen, pelvis and bone). All were clear except for 2 lesions on my liver.

    My tumor was only 2.7cm big, clear margins, no node involvement, and he restaged me from Stage II to Stage IV before they even pumped the first drop of chemo into me.

    I wish none of us ever had to make this decision. I wish not a single human ever had to make this decision.

    But I don't believe in magical thinking. I do believe in action. At least, in my own gut and mind, I know that I have done and am doing everything humanly possible at this point in time regarding our knowledge of cancer treatment.

    That's the best any of us can do, I suppose.

  • mawhinney
    mawhinney Member Posts: 1,377
    edited March 2010

    My tumor was .8mm but my Onco score was 31. It was right on the border for chemo.  My engineer husband grafted the benefit of chemo and in my case it only gave me a 3% better chance of long term survival. looking at the risks vs the rewards, I decided not to go with chemo.  My onco said he was fine with my decision.  I am a 21 month survivor but still question if I made the right choice.

  • icey
    icey Member Posts: 141
    edited March 2010

    Dear Horsedoc, I don't think u are crazy. If having chemo would make u feel better then u should have it. It is a very personal decision. Most women are terrified of breast cancer but my phobia is a heart attack. I have almost the same dx as u but I elected not to do chemo because I am more scared of the side effects( like heart damage)which there is probably not much chance of  than the chance of the cancer spreading.. I have to do radiation and tamoxifen for 5 years. Some women do the chemo and not the hormone therpy. My oncol says that the hormone therpy will do more to prevent the spread of the cancer than chemo. He would rather me do both. You have to read all u can and educate yourself and make a decision u can live with. Maybe if u feel more comfortable haveing chemo u could have a low dose chemo like cmf. There are not as many side effects. Good Luck

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited March 2010

    Did your oncologist do the Fish test to make sure that you are not Her2+ ??  I would want to know that it for sure is not +.  If it is than I would sign up for chemo so I could get the herceptin. 

  • horsedoc
    horsedoc Member Posts: 512
    edited March 2010

    yes they did do the FISH test and it was negative.  Forgot about that one.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
  • ICanDoThis
    ICanDoThis Member Posts: 1,473
    edited March 2010

    One thing that you may want to consider - and I was grade 1 as well, is that chemo just doesn't work very well on grade 1 tumors. Chemo acts by attacking fast-reproducing cells, and we just don't have a lot of fast-reproducing cells. This doesn't mean that women who have node involvement shouldn't take chemo, but my doctor said that the percentage of benefit increase would be less than the danger of chemo, and their first duty is to do no harm.

    That said, what about your other factors. Did you have any associated DCIS? Did they get really good margins? If you had a small, indolent tumor that hasn't shown any tendency to spread, then what, exactly, will chemo get you?

    I didn't get any of this, and finally went for a second opinion. Two doctors explaining it to me and I finally got it. That, and knowing a woman who died of chemo-caused leukemia, and another who is now dying of heart failure brought on by Adriamycin...

    Today, I am comfortable with my decision. Talk to more docs if you need to - how you feel is the most important thing you can do. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
  • horsedoc
    horsedoc Member Posts: 512
    edited March 2010

    Thanks for all the input.  Things about my tumor seem contradictory in a way;  it is a Grade 1 but it had a high Ki-67 which I understand to be an activity marker.  There were also mutiple areas of DCIS in that same breast. (That worries me.)  Margins were said to be adequate on the path report.  The other breast (I had a reduction so they looked at the tissue) had multiple areas of fibrosis (and other changes; I forgot exactly how it was worded) so that concerns me to that that could be a potential problem. My mom is a nurse in Florida (she actually works with post-mastectomy patients a lot) and she has shared my info with the oncology department in her hospital and they (and my mom) said they would feel better if I had chemo. Provided I go through the SE with my med onc and it seems worth the risk, I would like to do the chemo in order to feel I did everything possible.  I just feel like I have so many years ahead of me and would be upset if I had a relapse and had NOT done chemo.

    My onc had mentioned using Taxotere and Cytoxin; 6 treatments 3 weeks apart.  I'm meeting with her on Wednesday so I'll ask her about SE and also about the 4 treatment protocol of TC. I have seen some people on here talk about that.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011
  • momand2kids
    momand2kids Member Posts: 1,508
    edited March 2010

    this is a tough one--I was in the gray area and had to decide-- and I went with 4 rounds--- I tolerated it well, but as has been said, everyone is different.  Just want to point out you don't necessarily have to have a port with Adriamycin.... I had it and no port..... 

     Lots of folks here have info about the side effects of the taxanes.... you should be able to get really good info.  

    As my onc put it-- " you are in a good situation, the treatment makes it even better"

Categories