Anyone with an intermediate oncotype?

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  • shelbytroy12
    shelbytroy12 Member Posts: 26
    edited February 2011

    I just finished TC X4 !! So glad it was my last one.  I dont' have any regrets with an Onco score of 25.  I was willing to do it to get any possible reduction in percentage of recurrence.  Even 1% was good enough for me.  There was no long lasting risk effect of chemo for me I am told.  It has been pretty tolerable with the Neulasta.  A whole different story without it.  The fatigue is getting worse but knowing this chapter is done and I did it feels great!  On to radiation.  Best of luck with your decisions.  Being in this intermediate range is very difficult.  You have to make decisions with incomplete information.   I decided to choose the thing I would have least regrets over. 

  • thegoodfight
    thegoodfight Member Posts: 560
    edited February 2011

    You don't mention your grade and that was a deciding factor for me.  My onco was only 18,but with a grade 3 I decided to go forward with chemo and rads so that also would not have regrets.  I don't handle guilt well and I knew I could not face my family if I didn't do all I could to beat the beast.

  • ch08567
    ch08567 Member Posts: 20
    edited April 2011

    Hi there,

    This is a very personal decision and one that I had to go through myself.

    My oncotype test came back at 21 - chemo gave me a 3-5% better chance. It was the most agonizing decision I have ever had to make and in the end, I waited too long. By the time I got the onco test back, it was 12 weeks since surgery. It took me another 4 weeks to make a decision (they like to do chemo within 8-12 weeks of surgery). I did sooo much research on the pros and cons, and coupled with my home situation, I decided not to do chemo. I really think I did too much research - Chemo doesn't work on everyone, your cancer cells have to be actively dividing at time of infusion or it doesn't do any good, it only works for maybe 1 out of 10 women, secondary cancers, chance of neuropathy, blah, blah, blah.

    I didn't feel good at first about my decision - felt I would always be looking back over my shoulder and I felt quite sick about it - probably should have bit the bullet, but there were personal reasons why as well as logical ones. Anyway, I went to a naturopathic doctor who specializes in cancer and started out on a more natural regime. I now feel much better, much more confident. Who knows if it will help, but it makes me feel I am doing something so I am finally at peace. Am also having radiation done as we speak.

    Again, this is a very personal decision. If you have good support at home, that will make all the difference.

    Take care of yourself and all the best!

  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2011

    WWow great thread. My onc said there is a magic number and it's 20. I had a 22. I was also node positive. Decided after a lot of drama, tears, and research that chemo was not for me.

    I don't doubt the decision since I have had a lot of infection problems...the chemo might just have done me in.

  • kira1234
    kira1234 Member Posts: 3,091
    edited April 2011

    cookiegal, I so understand the infection part. I had 1 chemo treatment. It took my BS 3 months to get the infection under control. By then it was was way to late. With a 24 score I hope the femara does the trick along with life style changes.

  • Mwasi
    Mwasi Member Posts: 22
    edited April 2011

    You are just what I was looking for!!  I received a 19 and my oncologist seemed unhappy that I had the test.  It was ordered by my surgeon.  My Oncologist has always done chemo with any patients having possitive nodes.  I have two possitive nodes.  Do you have any possitive nodes?  If not they are not giving chemo for those women at U of C.

  • Mwasi
    Mwasi Member Posts: 22
    edited April 2011

    I just noticed that none of you had possitive nodes and still many of you did chemo.  I would like not to do chemo.  I worry what it could do to me.  But, tell me more about TC (Taxotere + Cytoxan).  This would be the drug he would use.  What was it like for the 12 weeks?

  • Mwasi
    Mwasi Member Posts: 22
    edited April 2011

    Tell me what being on TC was like.  (Taxotere + Cytoxan)  I have to make a decision whether to have chemo or not, and this would be my treatment.  Every three weeks 4 X.  My oncotype score was 19 but I also had 2/4 positive nodes.

  • sweetcorn
    sweetcorn Member Posts: 188
    edited April 2011

    I have a score of 28, high intermediate.  My chemo starts on Wednesday, and no, I'm not happy about it but I would rather have it now than later when maybe it shows up somewhere else.  My regimen will be one week of Cytoxan and Abraxane and then two weeks of Abraxane.  Abraxane is supposed to have fewer side effects.  Later comes radiation and then hormone therapy.  My main concern is feeling sick and losing hair!  But I got my wig and am ready for it.....

    Jane

  • LeslieVilla
    LeslieVilla Member Posts: 95
    edited April 2011

    I'm not doing chemo, My Doctor said something profound to me, which  made me realize that allowing my body to be poisned to the point that i can't not heal its self on its own is the wrong approach, but sadly " its all they know to do to us".  I will have surgery to get the lump out, but will try every alternative i can to help my own body to fight this cancer.  I have heard High-dose chemotherapy offers no benefit against breast cancer

    Learn more:http://www.naturalnews.com/001450.html#ixzz1IOLIIVvm

    There are many things to try first, like Graviola

    research on Graviola has shown that its compounds effectively target and kill malignant cells in different types of cancer, including cancers of the colon, breast, prostate, lung, pancreas and liver. Graviola's cancer-killing ability was even shown against multi-lymphoma.(1) According to research from Sloan-Ketering Cancer Center, extracts of Graviola have been effective against multi-drug resistant “MDR” cancer cells. (2) Researcher Jerry McLaughlin of Purdue University explains this is because phytochemical compounds called annonaceous acetogenins found in Graviola have the ability to stop energy production within cancer cells thereby “pulling the plug” on them. (3) In research funded by the National Cancer Institute, the Indiana Elks Cancer Research Fund and the Purdue Research Foundation, (3) Dr. McLaughlin's laboratory found that a specific Graviola acetogenin called bullatacin preferentially targeted multi-drug resistant (MDR) breast cancer cells in vitro causing their death. (2) Their research further showed that the annonaceous acetogenins found in Graviola were 250 times as potent as the chemo drug adriamycin against MDR breast cancer cells (2) while being minimally toxic to normal cells. (4) 
  • Mwasi
    Mwasi Member Posts: 22
    edited April 2011

    My score was 19, but I have 2/4 possitive nodes.  Did you have any possitive nodes?  My doc is letting me decide, but what to do???  Chemo, no chemo?

  • Mwasi
    Mwasi Member Posts: 22
    edited April 2011

    My score was 19, but I have 2/4 possitive nodes.  Did you have any possitive nodes?  My doc is letting me decide, but what to do???  Chemo, no chemo?

  • kira1234
    kira1234 Member Posts: 3,091
    edited April 2011

    I had no posative nodes, and no lymphatic involvment, yet my Onc. felt chemo was the right thing to do. My BS always felt I should not have chemo. My new Onc. seems to feel chemo isn't needed for me, but must say it is totally out of the question as it is to late now anyway. It has taken 6 months to heal for me.

    I have 1 queation what is your age. I'm 57 if I was young wath a family I would totally go for it.

  • kira1234
    kira1234 Member Posts: 3,091
    edited April 2011

    LeslieVilla, May I ask what your Onc. said that was so profound that you decided against chemo?

  • shelbytroy12
    shelbytroy12 Member Posts: 26
    edited April 2011

    mwasi:  I did TC X 4.  It wasn't a walk in the park but far more tolerable than I expected.  Day 3-5 are probably the worst.  Fatigue and bone pain were the worst side effects.  After that it got better each day.  I also got the Neulasta injection after the 2nd round.  With that, it really was so much better. For the first round, I didn't have it and got fevers, mouth sores, pain, diarrhea, etc.  You name it, I got it. But that neulasta works wonders.   The last 3 rounds were really not too bad.  As I said, I stayed in bed for a day or two and then I was up and around. Took a week off of work each time.  Lots of people brought me food and that was terrific. 

     I am now in radiation.  In retrospect, I don't regret my decision to do chemo.  It is  now behind me and I feel good.  It took a few weeks to get my energy back but now I feel great.   The thing is, we are all looking to our doctors for direction and they all don't say the same thing.  It felt so unfair to have to make this decision.  I tried to educate myself the best I could but in the end, you never will have complete information.  It's just where the research is right now for those of us in this range. They just can't say for certain.  Years from now they will know so much more.  So go with your gut and don't look back.  The chemo is do-able.  If you are going to do it, start and get it over with.  I thought 12 weeks was so long but time did move along and I am done!  Best of luck with your decision.

  • ch08567
    ch08567 Member Posts: 20
    edited April 2011

    Hello again girls,

    With my onco score of 21, I did not have lymph node involvement, although I did have lymphatic invasion.   This is why my chemo onc was pushing me toward the chemo.  Like I said, decided not to do chemo - am taking a more natural approach (melatonin, green tea pills, etc), along with the rads.  We'll see where that takes me.  

    LeslieVilla - the Graviola sounds interesting! I'd like to look into that a little more.

  • Pessa
    Pessa Member Posts: 519
    edited April 2011

    My Oncotype score was 24, neg nodes.  I decided to do everything possible to prevent recurrance.  I found my lump one month after a normal mammo and the US and MRI only identified the 9mm invasive part, not the 8 cm DCIS that was found on lumpectomy!  It seemed to me that there would be no way to identify recurrance before it became invasive.  Therefore, I had bilat MX, chemo (AC x 4) and am on Arimidex.  Chemo was bearable, Arimidex is bearable.  I was 58 at diagnosis (a year ago). 

  • Mwasi
    Mwasi Member Posts: 22
    edited April 2011

    I will be 62 in May. My onc appeared to be upset that I had had the onco test. When I first met him I gave him the results. He said, "Who ordered this test?". My surgeon, a woman, who was wonderful and always did everything to help me, ordered it. Although, if I hadn't had it, I would not in this dilemma, but it is good to have choices.



    I would not do chemo, if I had had no lymphatic involvement. The oncologist said, he has always advised chemo for cancer that involves the nodes, but he would be OK with my choice of no chemo. Before I spoke to him I assumed that would be his course, my score of 19 appeared on the graph as not responding to chemo at all. So I was shocked when he didn't recommend what the test showed in my mind. I emailed him that night with my decision, no chemo.



    I saw the radiologist this week and when I told him I wasn't doing chemo, his resident burst out with, "that's scary!" the attending doc said, "Oh no, we never use the S word with patients.". Poor girl she was devastated, but it made me stop and think about what I was doing. I asked the doctor what he thought about the Oncotype test and he felt it should never have been printed. Only 367 women were tested in my group, doctors don't change years of successful procedures unless thousands of women have been documented.





    I emailed him that night and said no chemo for me.

  • Mwasi
    Mwasi Member Posts: 22
    edited April 2011

    My last post should not have that last sentence. It is confusing. I am using my iPad and with this tiny little posting box I couldn't access it to delete it. That sentence is already in a paragraph above.



    I want to say how wonderful it was to wake up this morning and have so many responses to my concerns. Thank you so much. I will do chemo now, thanks to that sweet resident who couldn't contain her fear for me and all of you, who are not that much younger than I and brave enough to tough it out.

  • Mwasi
    Mwasi Member Posts: 22
    edited April 2011

    Shelbytroy12, thank you for all the details. Would you tell me your age? I worry that my age might be an issue, as far as my body being able to handle chemo. I see the oncologist again tomorrow with lots of questions. I'm 61, birthday in May.

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited April 2011

    My score was 17 and I had a micromet in one node. I chose no chemo.

  • Mwasi
    Mwasi Member Posts: 22
    edited April 2011

    I would not do chemo either if I had no lymph node involvement. There are so many risks with chemo, including leukemia. It terrifies me. I believe you will be fine. My radiologist said that the only reason they do chemo first is because it is the hardest. They never said it had to be done in a certain time frame. He said I could do chemo after radiology. Which I might do because there's more freedom to leave town. Radiology is everyday M-F for 6 weeks. Ladies, what is your opinion of that?

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited April 2011

    I asked for the Canadian Protocol, 16 treatments at a higher dose. Very doable for me and as long as you slather emu oil 3-4x/day no burning.

  • JustSaying
    JustSaying Member Posts: 73
    edited April 2011

    I had a score of 18, did not choose chemo. 2 oncologists agreed that the harm it would cause would not be a good trade for me, becuase if you look at the benefit & the margin of error, my benefit would fall inside the margins of error, so it's quite possible that there would be zero benefit to me. At least that's whay I recall from 2 years ago. I did have a complete mastectomy after a failed lumpectomy. So I'm on the Zometa trial and tamox. I still stop and wonder sometime if I should have gotten it.

    Andrea

  • cookiegal
    cookiegal Member Posts: 3,296
    edited April 2011

    Make sure you get the whole 4 page oncotype report. The charts are very helpful.

    Admittedly the node positive chart is based on just a few hundred women.

    For a 19 with 2 nodes it's close, but you can make a case for not doing the chemo.

    Look at the bars on the graph and see if you are comfortable with the margin of error...and where you are on the chart.

    The prognosis for 1-3 nodes is worse than no nodes...but the difference is not that great.The margin of error bars are really close.

  • Lee7
    Lee7 Member Posts: 657
    edited March 2013

    Just saying,

    I also stop and wonder if I should have passed on chemo, but then I remind myself why I chose not to.  I don't handle any drugs or chemicals well, and I'm allergic to many things. I was pretty sure chemo would do me much more harm than good.  My score was 20, with 1 positive node and another with a micromet.  I'm in that margin cookiegal mentions...no way to really know if I'd have any benefit from doing chemo.  I am going ahead with the rads (on #14 now) and am taking Arimidex. 

  • Mwasi
    Mwasi Member Posts: 22
    edited April 2011

    Well, I am doing chemo. A week and a half ago I decided no chemo. When I saw the radiologist, he inquired about my chemo. I said I am not doing it. The resident blurted out, "oh that's scary!" the attending said to her, "oh no, we never use the "S" word with patients." she was devastated. In a way she made me think about my decision. The radiologist didn't think enough women had been tested to justify changing known successful procedures so I changed my mind. I have 2/4 positive nodes and a score of 19. It would have been an easy choice without node involvement. Tell me how it is and what I can do to relieve the side effects of taxotere + cytoxan. I start Thursday. :(

  • Lee7
    Lee7 Member Posts: 657
    edited April 2011

    Mwasi, Here's a link to a thread about starting Chemo in Feb 2011. You can read everyones experience in that group, many are doing TC, and get some good tips.   If the link doesn't work, just search under Chemotheapy Before & After and you'll see lots of threads about Taxotere and Cytoxan.  Wishing you all the best. 

  • Mwasi
    Mwasi Member Posts: 22
    edited April 2011

    I asked the doctor about Neulasta and if I had to wait for symptoms.  I do.  The medicine costs $7,000.00 per injection.  So, maybe I won't need it.  I do have insurance, so I don't know why he told me that.  It is interesting.  Did you take it all three times after your first treatment?

  • Mwasi
    Mwasi Member Posts: 22
    edited April 2011

    I could not find any persons on TC with this link.  Only AC.  I even searched and nothing came up. :(  thanks for the suggestion, do you know how to get to those taking TC?

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