Follow-up to second surgery

Hi all,

Just a followup-I hope everyone is doing well as we move into the Holidays. Had my second surgery to remove more tissue and node biopsy. Nodes came back clean and my doctor was able to get a sufficient margin and didn't find any more invasive DC and only found another small area of DCIS (.05mm) I went to the radiation and medical oncologist yesterday, being fitted for my cradle on Wednesday, and start Letrozole (an Aromatase Inhibitor) today. I'm going to take it at night, as suggested by another member, in hopes that will reduce side effects.

Medical oncologist said because the original area of IDC was small (5mm),there was no reason to do the Oncotype DX test, which as I understand it, scores the tumor for the likelihood of the cancer returning. The doctor said because we would not be doing chemotherapy and only radiation with hormone therapy, the Oncotype was not relevant. I'm doing more research on that as I'm not necessarily in agreement-does anyone have any opinion on Oncotype DX testing?

Overall, I'm feeling fine. A little anxious as I move onto radiation and taking medication which will block all the estrogen my body tries to make. I've been off hormone replacement therapy since I was diagnosed in September, 2016, at age 51 (I had a hysterectomy with oophorectomy at 37) and have already started with mood swings and hot flashes. Since I'm up posting at 2:00am, the ability to sleep through the night also eludes me.

Thank you all for your posts-it helps to read everyones journey and know you're not alone.

7 Replies

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  • Thank you for posting this. Glad you have rounded the corner and are moving forward. Try not to be anxious, a tall order, I know, but think of it (radiation and AIs) as a path to further your healing. I wanted to invite you to attend the AI support group I facilitate. It meets every 2 months, with the next meeting on Tuesday, October 20 at 6 pm in Share's NYC office. There's always some helpful new advice on coping with life on AIs. I always learn something new.

  • FYI, I think there was an error in your post. Did you mean that the next AI support meeting is on December 20? Thanks.

  • Yes, thanks for catching that. It is indeed on December 20.

  • Absolutely!

  • Hi WBaca1,

    Very glad your nodes came back clean and that you're feeling fine overall. Re: Oncotype DX, I believe that one of the other purposes of the test is to see how likely the tumor is to respond to chemotherapy. So if your doctor does not intend for chemo to be part of your treatment plan, then perhaps Oncotype DX wouldn't be helpful.

    Could others comment on this? Might there be a reason to have the test even if chemo isn't part of the treatment plan?

  • Hi WBaca1. Thanks for posting-- sorry to hear you're not sleeping, though... I came across this article from breastcancer.org: breastcancer.org/symptoms/t...

    The Oncotype DX isn't just used to decide whether chemotherapy would help, but also, as you said, to predict the likelihood of recurrence. If the tumor was small enough to not require chemo then it might be irrelevant in that sense, but it might provide information you want regarding risk of recurrence. Have you expressed your concern to your doctor about it?

  • Hi there, I'm glad you are doing reasonably well. I believe the biggest advantage of the Oncotype DX test is knowing your risk level of having a recurrence. When the oncologist at the medical center where I had my surgery would not authorize the Oncotype DX, I turned to both my local oncologist who is administering my treatment & my radiology oncologist who both disagreed & ordered the test. The test gives you a score of between 1-100 (higher number being higher risk for recurrence) & "we" (doctors and me) were thrilled when my score came back as 5. It was only then that the decision not to do chemo was validated. Good luck to you & hope this helps.

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