Oncotype score 26. What should I do?

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  • encoremom
    encoremom Member Posts: 186
    edited January 2009

    Thought I would join this thread.  I had two tumors, less than 1 cm each, ER+.  I'm 52 and postmenopausal.  I had a bilat masectomy due to family history but no BRCA gene.   My onco score was 24 -- right in the middle of intermediate.  My oncologist at a major breast cancer center consulted with others and all recommended that I NOT do chemo.  They said that the intermediate group is still in question because its unclear whether the risks of chemo outweigh the benefits.  That's one reason that the TailorX study is being done.  My onco told me ultimately the choice was mine but that they do not recommend chemo unless the benefits clearly outweigh the risks.  I'm on Arimidex for five years.  There are no guarantees either way so I pray that I made the right decision.  If the cancer recurs, there is also always that possibility that the chemo could have caused other major health problems.  In the intermediate range, it really is a matter of personal preference and comfort level.  Good thoughts to all.

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  • Snowbird
    Snowbird Member Posts: 124
    edited January 2009

    Hello ladies.  I have an Oncotype score of 26 too and really appreciate all the discussion and information shared here. For what it's worth, after reading many posts in other subjects on this forum about various treatments and options, I decided to go for it and tough it out through chemo.

    I received much courage from reading of others' experiences, and although I don't really want to lose my hair, I felt that at least that's only a temporary problem! I chose a mastectomy, even though I could have had a lumpectomy, because as a former smoker, I wanted desperately to avoid having radiation. At 60, I have no plans for reconstruction. The opportunity to reduce my chance of reoccurance, even "slightly", was worth the temporary discomfort of chemo to me. So, I've just finished the first of four rounds of TC and bought a wig that actually looks better than my own hair (I think I need a better hairdresser!)... 

    So far I've only had some very slight quesiness on day 1 and day 2, but took the meds and it never interferred with my appetite. The booster Neulasta shot on day 2 made me VERY tired and achy, but a nap & some Tylenol seems to take care of that alright. I guess I'm one of the lucky ones so far and have had none of the other side effects (yet?)...  We're good with our diet and exercise, and I think that's probably helped alot too. I take a walk (not as far or as fast as before, but...) and we routinely eat a bowl of oatmeal almost every day. So far, this is all very doable, but I don't have children or an employer to answer to anymore either. My admiration to all who are managing through this with those added responsibilities. I can't imagine how difficult this must be for you.

    So, that's my story for any who might find comfort or support there. Ask any questions. I've learned so much from others here and will contribute what I can too. Here's to a "new do" in 2009!

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited January 2009

    Deborah - I did get the Oncotype DX test - my score was 22 - low-intermediate - with a recurrence risk of 14%. My oncologist was just going to give me the Arimidex for 5 years, until he read my Fish report which showed I was Her2+++. He was so surprised, he sent my tumor samples out to a second lab for a second Fish test and it came back with an even higher Her2+ score, so he said I needed Herceptin with chemo to reduce my risk by half to 7%. But because Herceptin works well with any chemo, he put me on a very unusual treatment - Navelbine for 4 months with Herceptin continuing for a year. Navelbine is usually for women with mets........it doesn't cause heart problems or hair loss. He consulted with other oncologists who agreed with him - and on my own I asked 3 other oncologists and they agreed - saying that oncology is as much an art as a science. I still feel worried that I'm in an unorthodox treatment protocol (sometimes I believe I'm the only patient who ever followed this protocol) and I pray I never get a recurrence.

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  • auriga
    auriga Member Posts: 315
    edited January 2009

    Ivy,

    Thank you so much for your encouragement. I came to the same conclusion that 26 was closer to the high risk rather than the low risk. But, I still wonder if I am making the right choice. I have very long hair and get lots of compliments on it. I hate to lose it. Although I already have a wig waiting for me in the closet.

    I am so scared about being sick too. I hope it is more towards feeling like you have the flu for 2 -3 days. I can handle that. I can't even sleep at night I am so nervous about this whole thing.

    One thing this disease has taught me is respect and admiration of anyone going though any type of cancer. I never had a clue what is was all about.

    Thank you all for your answers and advice. I appreciate it so much. You ladies are a godsend.

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  • NYCarol
    NYCarol Member Posts: 347
    edited January 2009

    I think sometimes the side effects from chemo are not discussed in depth prior to starting treatment.  They certainly were not discussed with my sister, and she has suffered severe heart damage from the chemotherapy.  None of us, including her oncologist, had any idea that her heart was being damaged when she was complaining of fatigue and back pain during chemo. 

    So, if you decide to take chemo even though you have a fairly low chance of recurrence, be sure and thoroughly discuss the possible side effects of the chemo you are going to take.  What a tightrope we are all balancing on. 

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  • Lisa1965
    Lisa1965 Member Posts: 171
    edited January 2009

    Hi, It's after New Years and therefore Happy New Year bc sister...All I can tell you my true feelings is that I scored 25 and that was not even a question in my mind that whether kids OR not if I had a chance to improve my life span....I would do it.  Trust your doctors and your feelings.

    xooxoxoxoxoLisa

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  • encoremom
    encoremom Member Posts: 186
    edited January 2009

    It is a very personal decision.  NYCarol makes a good point.  Part of the reason I decided against chemo was that the doctor reminded me of a couple of things.  One, that chemo doesn't cut your risk completely, it lowers it by a certain percent and two, that you should weigh the percent of lowering risks against the chance that you will have a serious side effect.  For my situation, the oncologist felt that the difference between the benefits of chemo (about 3%) and the chance of getting a secondary cancer or heart disease (2%) was about 1 - 2% and wasn't worth the chemo so he recommended against it.  That combined with the uncertainty of its benefits in the intermediate Oncotype DX range helped me make the decision for me.   I suggest that all talk with their doctors about the benefits and the risks of chemo for them personally.  Everyone's situation is unique and everyone's comfort level is different.  No matter what happens down the road, we need to be comfortable with our decisions.  Happy New Year to all.

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  • ginasmimi
    ginasmimi Member Posts: 7
    edited January 2009

    Hi, I had a lumpectomy on 11/14. I thought my diagnosis was very clear as my lymph nodes were clean and I had clean margins. My original biospsy came back HER3+ which came back FISH neg.  My surgeon assured me all was well and sent me to an oncologist for a treatment plan, which I assumed would be radiaton and hormone therapy OR chemo.  The oncologist only talked chemo due to HER+ However, she did order the Oncotype test which she stated would show more about the HER status. I was very upset after my visit with her.  She just seemed too intent on chemo. I called my surgeon and she recommened that I go to a University Hosptial for a second opinion.  Unfortunately, I have to wait till 1/13 to see this Dr. That Hospital and my surgeon assurred me that I could afford to wait, as my surgery was done. My oncotype came in at 22.  The HER factor was negative.  The original oncologist called me to tell me that obviously the choice for chem was up to me, but I had better getting moving and start some sort of treatment.  When I questioned her about the HER neg on the oncotype, she told me she did not have a lot of faith in that portion of the test, as it was new. So we spent $3,800 which we we don't know will be covered by insurance and waited two weeks and she questions this test? I was very upset.  Called Oncotype and they said their HER testing is better then FISH.  Since I cannot see this oncologist for another 11 days, I also went to a radiation oncologist for my consul and have set up a date with her to be marked for radiation so that I'm not wasting more treatment time.  So, technically I have one HER +++ test and two HER - tests.  I have pretty much decided that I will do radiation unless this oncologist really gives me a % that show chemo would be quite beneficial.  I swear that being diagnosed with BC was not as bad as this treatment decision.  Wishing everyon a Happy 2009! 

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  • whippetmom
    whippetmom Member Posts: 6,920
    edited January 2009

    swimangel72: Thank you for the additional info.  I am going to insist on the Oncotype Dx! Sounds as though you have some "cutting-edge-treatment oriented physicians.  I think this is a good thing.   

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  • hopefullady
    hopefullady Member Posts: 210
    edited January 2009

    I just wanted to say that I think that Carol is probably right about things not being explained in depth.  A lot of the side effects and risks of chemo were just in the paperwork that I had to read and sign, but had not been really discussed with me.

    Also, at the time, my mind could only handle so much information and a lot of what was said went by the wayside.  There was a lot that I didn't fully understand and I'm sure that I didn't really "hear" half of what I was told.

    I'm pretty sure that my oncologist told me about distant recurrence and metastatic BC when I was trying to decide whether or not to do chemo, but I didn't really understand it until my second  opinion doctor explained it to me slowly and carefully and in layman's language.  

    It's sad that we need to make all of these decisions about our treatment at a time when we are really in no shape to be making them.

    Chris 

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  • danigirl
    danigirl Member Posts: 9
    edited February 2009

    Listen, you have to do whatever your mind tells you.  I was 47 years old and had an oncotype dx of 29.  As much as I did NOT want to do chemo, I did it for those few percentage points,,, Chemo was a breeze (a/c)  the neulasta shot was NOT,  and Neupogen in the end did the trick to raise my WBC without the agonizing pain of neulasta.  But I have two girls I want to be a grandmother to one day, and in the end I did not want to leave any stone unturned.  And as much as I did not want to lose my hair, in the end I put it in the hands of my oncologist and wound up with a wig. I have never regretted my decision.  Good luck

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  • glendag
    glendag Member Posts: 53
    edited February 2009

    I agree with danigirl.  my score was 20 and I did the chemo too - 4x TC.  It wasn't a breeze but looking back -- really it wasn't as horrible as I thought it would be.  And it's temporary.  I'm glad I've thrown everything possible at this.

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