No chemotherapy with positive nodes? :( HELP!

Moonflowers
Moonflowers Member Posts: 1
in Breast Cancer #1

Hi ladies I'm very new here and I need your advice. I was diagnosed with ILC at the beginning of the year and has a unilateral mastectomy. Pathology showed tumor that was 4.2cm and 2 of 9 nodes were affected. Oncologist sent for oncotype for 1-3 nodes and it came back with recurrence score of 5 so no chemo. Would you trust this? Or should I demand chemo? Apparently it's a 10% chance of distant reoccurrence at 10 years. I'm doing radiation also.

Comments

  • bcdaybyday
    bcdaybyday Member Posts: 1
    edited April 2021 #2
    oncotype score

    Hi- I am also new to this website.  

    Congratulations on the very low Oncotype score of 5.  That is good news.  Mine is a 7.  I chose not to have chemo, but I had negative nodes.  I had a lumpectomy and radiation therapy and then Tamoxifen which caused endometrial side effects that will require surgery and now have switched to anastrazole.  My gut told me not to take the Tamoxifen because of the endometrial side effects and I wish I would have listened to my instincts.  Now I have to have another pandemic surgery.

    The bottom line is is if you are feeling uncomfortable with what you are being told, follow your instincts and get another opinion.  We know our bodies the best.

    Good Luck!

    L

  • Elaine_wi
    Elaine_wi Member Posts: 124 Member
    #3
    No to Chemo

    I would absolutely NOT have chemo if it's not recommended. There have been years of research on this. It's been concluded that there is no benefit to having chemo with a low Oncotype score, mine was 6 and had one positive lymph node. I'm grateful I didn't have to suffer through chemo and it's lasting side effects.

  • Phoebesnow
    Phoebesnow Member Posts: 600 Member
    edited May 2021 #4
    Low score

    my score was a 9.  I had 3 small tumors in one breast and indicators of the other breast possibly getting cancer, I had one node positive for micro metastasis of 35 itty bitty tumor cells.  It is not considered a true metastasis.  I do have lymphovascular invasion at the tumor site.  I decided on a double mastectomy  with instant reconstruction and radiation to one breast.  I decided to not take the aramotose inhibitors.  I have had MRI, Ultrasound, Pet Scan during the past year and no sign of reoccurrence.  I did a lot of research before choosing this path And I recommend that for everyone.

     

    i woke up from surgery looked down at the top of my breasts and they looked just like they always did.  What a feeling of relief and happiness.  My doctors were against the immediate reconstruction because they were afraid that I would be deformed from the radiation. Like I said I did my research looked at a lot of studies and opted for this path.  As a previous cancer survivor I know what radiation and chemo does to the body.  There are vitamins (that are ok with your radiologist) and other products  that you can take during radiation to greatly minimize the damage Of radiation burn (which really isn’t a burn).  

    i do not look like Barbie but I didn’t before either.  When I look in the mirror even with no nipples I am very pleased with the outcome. I have purchased prosthetic nipples that are pretty good too. 

     

    I was diagnosed at 58, I rode horses 2 months after radiation ended and started back surfing at six months out from surgery.  I feel blessed and happy.  I am sure the physchological struggle for younger people is more difficult.

  • Pepper12
    Pepper12 Member Posts: 2
    #5
    I'm happy your oncotype score

    I'm happy your oncotype score was so low. I'm new to this site and new to breast cancer. I'm 58. I have a similar situation but my oncotype score is 19. I had a double mastectomy in April. Was told I was stage 2A, grade 3 and 2 of 4 lymph nodes positive. Two tumors largest 4.6 cm. Good margins. Learned score this week. Oncologist said anything under 25 score normally no chemo but in my case she would consult colleagues and call me by tomorrow. I know I will have radiation. I don't want to be over treated but don't want to be under treated. Anyone else have a similar experience? Thanks 

  • Dpasko451
    Dpasko451 Member Posts: 1 *
    #6

    How irresponsible am being refusing Chemo with 4 positive Lymph nodes?

    I hope this site is still current because it looks like a valuable resource.

    After being a 15-year survivor, Breast Cancer has once again reared its ugly head. This time, tumor size only 1cm but 4 of 7 lymph nodes involved, removed during lumpectomy a couple days ago. Plan was to have radiation and then AI and targeted therapy with Venzenio. I had refused Chemotherapy after seeing my mother die from it (not the breast cancer) after 6 months.

    Oncytype on biopsy was 22. Pet scan showed no further metastases, and 27-29 blood test was 25. ER+ 100% I have the PALB2 gene.

    Am I being totally stupid refusing Chemo still?

    Thank you!

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