Lumpectomy over, not sure of next steps

melrose7

So I had my lumpectomy last Thursday and recovery has been good. Terrible sore thoat until Sunday, like bruised throat, but my left breast has been good, just tender if bumped. Met with my oncologist yesterday and we were able to go over the pathology report. Clear margins, all DCIS, no invasive found. Smaller than thought, only 5mm instead of 13mm from biopsy. No nodes involved. But it was intermediate to high grade. Comedonecrosis is absent, and DCIS was cribform and solid. Oncologist is not pushing either radiation or tamoxifen. He understands my reluctance to do neither. I had him order the oncotype test that will help me make my final decision. I go back and forth on both radiation and tamoxifen each day. I am just looking for a clear right answer but I don't know if there will be.

Moderators

So happy to hear your recovery is going well Melrose! And also happy to know you've gotten more answers about your diagnosis, to help you make informed decisions about treatment. Of course, it's a tough decision, but the more you know about what you're dealing with, the easier it will be to formulate a plan.

Please keep us posted on what you decide -- we're all here to help you through it!

Sending healing thoughts,

--The Mods

Annette47

Unfortunately I don’t think you will get a clear answer. It will all come down to your tolerance for risk, and what those risks are in your personal case. All I can suggest is that you gather as much information as you can with regards to recurrence with and without further treatment(s), and then go with your gut about whether you think it is needed. And the reality is that someone else in your position with the exact same information could easily reach a different decision and neither one of you would necessarily be right or wrong.

For what it’s worth, I did both radiation and Tamoxifen and had no significant problems from either ...

Tappermom383

I forgot about my sore throat! And that whole bumping your breast thing - why are so many tables at just the wrong height?

Best of luck as you make your decision. Annette is right - it has to be what fits you best. You're doing the right thing - gather all the info and test results.

MJ

BCAE

I just wanted to write to commiserate with your dilemma. I had my lumpectomy about a week after you. My DCIS was bigger than what they originally thought - at least 2 cm.Unlike you, I do have necrosis present. My Oncotype came back low!I haven't talked to my oncologist yet...but like you, I am reluctant to have radiation or tamoxifen and was planning on using the Oncotype score to help me decide. I was also going to order a newer prognosis test to see if that would help me. However, the thing that is hardest for me in my decision is the fact that my tumor size went up and what that mean for recurrence. (I have been looking at the Van Nuys Index also...and on that scale I should do rad.) Like you, I go back and forth everyday. I will say that the doctors that I talked to who were more supportive in my considering not to do radiation were that way because of the original size - that is, when they all thought it was only half a centimeter like yours turned out to be! Just curious if you have gotten any closer to your decision yet?

melrose7

Hi, it sure is a hard decision when the expected course of treatment overall is surgery, radiation, and drugs. I met with my oncologist this week and got my oncotype score of 19. He is in agreement on no radiation. I will have a mammogram in October and an MRI next year. I met with a second opinion radiation oncologist too and he felt the same. Yes, I'm taking a chance but it's one I'm willing to take. As long as my doctors didn't think I was making a stupid decision I am happy not doing radiation or tamoxifen. Doctor doesn't like tamoxifen because of the risks of blood clots. I think if mine was closer to 1.5-2cm i might reach the same conclusion. As long as margins were clear. I did have necrosis present in biopsy not in surgery. Good luck

BCAE

So glad you were able to get good counsel from your docs that made you feel that you were not making a "stupid decision." Totally get that! Btw,I forgot to ask if age was a consideration at all. I am younger than 50, so that was another concern for my risk of recurrence.

melrose7

yes, since I am just 40 that was a big red flag (and I loved hearing how young I was every time I had an appointment). But I was willing to task the risk as I know I have a chance at a longer life than someone diagnosed at age 60 but we are not guaranteed tomorrow and only God knows how long we will be here so if it comes back before 50 or 60 I will deal with that if/when it happens. Science is changing so much who knows what the recommendations will be if that happens

ThreeC

Had my first surgery in April for what was described from my biopsy as an "Atypical Papilloma". During surgery they discovered 3.8cm of DCIS with unclear margins. My BS scheduled an MRI, bilateral U/S and another mammogram. The scans showed additional areas of concern on the left and found three new "areas of concern in the right breast". Three new biopsies were done on the right and were declared to be papillomas of a benign nature. My second surgery was done in May on the left breast again. This time 5 cm of DCIS was removed and clear margins were noted. I felt like a huge weight had dropped off my shoulders. Now I have appointments in July with both an RO and a MO. I'm glad of the time to recover some before the next steps. I want time to research what steps are best. The pathology did show stromal fibrosis which will continue to need close monitoring. I also have Thyroid cancer and Thyroid autoimmune disease so I have concerns about the effects of Rads, Hormone therapy and Chemo.

BCAE

Melrose7: I share your thoughts about recurrence and how hopefully the medical community will have better ways to differentiate and treat DCIS in the future!