Chemo or Not?

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SusanFV
SusanFV Member Posts: 2

I am 58 years old and was diagnosed 12/21/17 with IDC. ER+ PR+ HER2 -. I had a Right mastectomy 2/6/18 with expander placement. No lymph node involvement and clear margins.

Three tumors; largest 4x4x3 cm. 1 tumor grade 2, 2 tumors grade 1. ER 9.2 positive, PR 7.1 positive, HER2 9.5 negative. ONCOTYPE = 15.

My MO first stated no chemo based on ONCOTYPE score, but upon further discussion and asking what she would do if she were in my shoes based on tumor size, she said she would do chemo (to make sure she did everything possible to prevent a re-occurrence).

I am so torn as to what to do. Are the side effects of chemo worth the additional 5% chance of non-re-occurrence?

Comments

  • moth
    moth Member Posts: 4,800
    edited March 2018

    oh gosh, that's a hard decision. I have no advice but maybe a bit of info/questions to help you navigate.

    How strong is your ER+/PR+ on your pathology? The stronger, the more responsive to tamoxifen and AIs. What Grade tumours?

    Just FYI, until a few years ago, Oncotype wasn't routinely used in my province and they made chemo decisions based on these guidelines:

    "In general, if the cancer exhibits any or several of the characteristics listed below, the benefits of chemotherapy should be considered:

    • Tumor >2cm
    • Lymphatic and/or vascular invasion present
    • Grade 3
    • Weak ER and PR expression (Allred score 3-5; ER 1+ by IHC)
    • Node positive"

    http://www.bccancer.bc.ca/health-professionals/cli...

    but oncotype really changes things. Their data seem really robust and it was explained to me that the risks of chemo outweighed the risk of recurrence if you got a low score.

    Can you get a second (or third) opinion?

  • Minivanmom
    Minivanmom Member Posts: 1
    edited March 2018

    I was just diagnosed, and my doctors want to hit it with everything they’ve got—to make sure (as possible) it does not recur. MD Anderson doctors—they are some of the best there is! Get chemo

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited March 2018

    Chemo isn’t a picnic, but it is doable. Some sail right through it with minimal se. Others have problems. Your MO has the whole pharmacy to help you.

    I’lldo it again if I have to, just so *I* know I’d done everything I could.

  • Loki
    Loki Member Posts: 21
    edited March 2018

    SusanFV-I am new to this site and going through the same dilemma deciding about chemo ( IDC, Stage 1c, 1.6 cm Left, Grade2, ER PR+, HER2 -, 0/5 lymph, high KI67, Oncotype 29). Diagnosed Dec2017. L lumpectomy 1/29. It has been a roller coaster waiting for tests as original biopsy results Her2 neg, then tumor biopsy showed equivocal for Her and FISH was sent. Did come back neg. Then Oncotype sent. MedOnc said TC chemo recommended but I'm not sure of the percentage of decreased risk of recurrence. Don't feel like they can give a clear answer- I am intermediate score range and the benefit of chemo is a gray area. My score is 2 points from high range for which trials have shown benefit from chemo. Anyone else with experience like this or advice on making a decision

  • moth
    moth Member Posts: 4,800
    edited March 2018

    You can try running your numbers in the Predict calculator from NHS.


    http://www.predict.nhs.uk/predict_v2.0.html

  • Georgia1
    Georgia1 Member Posts: 1,321
    edited March 2018

    Good morning Susan. My stats are similar to yours except I had two tumors and Oncotype score was 18. I'm 59. This is a classic case where you should find another hospital and get a second opinion. My ER and PR scores were above 90 percent and I was quite comfortable skipping chemo. Feel free to PM me.


  • SusanFV
    SusanFV Member Posts: 2
    edited March 2018

    Thanks everyone! I am very fortunate to live in NC with 2 great teaching Universities close by. I am scheduled next week for a second opinion.

  • Loki
    Loki Member Posts: 21
    edited March 2018

    Thanks moth- this is good but seems to be survival only- not predictive for recurrence. For me that’s my concern. I am going to a top medical center / cancer center and doctor and pretty sure any top doc would give the same advice. But I am really wrestling with this. I think it makes it all more real.

  • DearLife
    DearLife Member Posts: 1,183
    edited March 2018

    Moth, thanks for the link to PREDICT. Not sure if I am using it right, but it shows only 0.4 per cent benefit for adjuvant hormone therapy over five years, and 1.0 percent benefit over 10 years. I am 100% ER positive so the small hormone benefit surprises me.

    With my diagnosis, all the benefit seems to be from surgery (92.1%,79.2% over 5 and 10 years respectively). Or am I reading this wrong? (age 69, 13 mm tumour, no nodes, assuming no chemo)

    Also, I see that PREDICT is based on a study of 5700 women treated between 1999 and 2003. I wonder how much better the odds might be now with more recent treatments.

    Finally, do you know if PREDICT assumes radiation treatment?

    Loki, if you scroll down here http://breast-cancer.ca/chance-cure/ you will see a table of recurrence rates. This includes all forms of breast cancer recurrence, not just IDC.

    Interpreting this data is challenging; thanks for any light you can shed.

    I am seeing my surgeon tomorrow after lumpectomy on Feb. 26. Will ask her about Oncotype testing, also survival rates. I too am wondering about chemo yes or no.

  • lean1982
    lean1982 Member Posts: 4
    edited May 2018

    Loki,

    So you did a chemo already? Could you tell me why did you have that decision?

    I was told that chemo make a 5% decreasing of recurrence risk. But I really do not want it.

    Anyone have the same or experience for me?

    Thanks.

    Best wishes for all.

  • Loki
    Loki Member Posts: 21
    edited May 2018

    lean1982- I had a hard time getting the dr to commit to any numbers which was very frustrating. I did make the decision to do chemo-4 treatments. My Oncotype was 29 ( 2 points from high) and my med Onc essentially considers it in the high range. My 10 year recurrence rate is pretty high and I don’t want to regret not having treatment. I looked at my age, biopsy and test results as well to make my decision. There is no guarantee either way but .....chemo is the only way to get at any cancer cells that have already “escaped” the area and do anything about metastasis. Radiation is local treatment only. As I have had some fairly serious side effects ( hospitalization for fever and neutropenia and hand-foot syndrome) along with being fairly incapacitated for s week each treatment I wonder sometimes though. I alsohad a lumpectomy not a mastectomy. It’s not an easy decision. I’m not sure that helps. I see it as a very personal decision- different for each of us. try to get all your questions answered so you feel you are making an informed decision.

  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2018

    Chemo is not the only way to kill cancer cells that have escaped for hormone fed cancers tamoxifen or AI drugs will do that as well. I specifically went into detail with my oncologist anastrozole would kill them not just stop growth.

  • lean1982
    lean1982 Member Posts: 4
    edited May 2018

    Loki. Thank you so much for your reply. You did all possible, carefully and courageously.

    I am in Vietnam where does not have oncotype test for me. My Ki67 30% is so high and that make me scared. However, I believe that is a pure tubular carcinoma with 100% positive ER and EP, which not need a chemo for treatment.

    How about your Ki67 and percent of ER, EP, Loki?

  • lean1982
    lean1982 Member Posts: 4
    edited May 2018

    Meow13, could you share me more info about your experience of AI treatment? did you do that? Did you need a chemo?

  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2018

    chemo was suggested because oncodx was 34. I did 4 years first on anastrozole and then exemestane. I stopped due to side effects. I am 7 years no recurrence. I still see my oncologist every year.

  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2018

    I did not do chemo, forgot to add.

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