Dcis and hormone receptor status

goldie63

Neither the excisional biopsy or mastectomy pathology reports say anything about hormone receptor status. My surgeon says it's not necessary because since it's not invasive cancer even if it were hormone receptor positive you don't need to take hormone blockers for cancer that didn't grow outside the cell. Does this seem right? Should the tissue samples have been hormone tested? Can they still be?

Sorry if my understanding of what he said is not clear, he did say it wasn't necessary to test though. When I had idc 20 yrs ago it was er and pr negative (they didn't do her2 testing in those days) so I don't really know anything about how this works.

I don't have a copy of the pathology report from mastectomy (yet - I will be requesting). Initial biopsy showed 6mm Dcis, grade 3 w necrosis, < 1mm margins. Surgeon said pathology from mastectomy shows 1.5cm residual Dcis, with now widely clear margins.

I have appt at cancer clinic for consultation on April 4th. Any input is appreciated. Thanks.

annoyingboob

I had a 7mm dcis, grade 3 w necrosis, highly er/PR+, and had lumpectomy surgery, partial breast radiation, and am now on tamoxifen - they recommended 5 years for me. Said if I had chosen mastectomy I wouldn't need xrt or tamoxifen. I think that's the difference - conservative surgery buys you extra treatment. Bilateral mastectomy is a more difficult surgery but the major benefit is you escape xrt and tamoxifen. Good luck

goldie63

thanks for that info annoyingboob

TrmTab

I had a UMx so I am on Arimidex as protection for the remaining natural R breast...if I had a BMX, I wouldn't be on AI

goldie63

Thx TrmTab that makes sense too

MTwoman

Goldie,

For them not to have tested for hormone receptor status would be confusing to me as well. I ended up with UMX and had TN DCIS, but my MO said he'd prescribe me Tamox if it would give me peace of mind. (even though there was no evidence it would be effective in ER-/PR- disease prevention) I didn't really want the SE (I was only 38) with no benefit, so I said 'no thanks'. I think that treatment should be about risk - how much risk of a recurrence do you personally have without the treatment vs how much risk with the treatment - balanced by side effects of the treatment. i.e. is the benefit gained worth the side effects of the treatment. Each woman's personal risk is different, so yours should be discussed with you and you get to make choices based on what level of risk you are comfortable with.

And, no offense to your surgeon, but he/she shouldn't be the one deciding on your follow up treatment. Surgeons cut, MO's prescribe meds and are the ones who are expert in risk based on your pathology and personal stats. The MO needs that pathology to help you assess risk. The RO is the one who determines if radiation is needed and what the risks/benefits are for that treatment. That is why women have a team, not just a surgeon.

If you haven't already got an appointment with an MO, I would. Also, demand that your surgeon get the appropriate pathology before your tissue has been disposed of.

goldie63

thank you MTwoman. My biggest concern at this point is bc for the 2nd time (idc and niw Dcis), brca2, and with bmx now how am I to be followed up? Once determined to be brca2 I was put into the high risk breast cancer screening program and now without the need for mammograms or breast MRI is it just nothing? I just had to take a little break for a cry. I did not realize how stressed / upset I am sbou this.

MTwoman

Okay Goldie, take a breath. I completely understand not wanting to be in a situation where you don't feel like you have any monitoring or active suppression going on. You've been in active surveillance or treatment for 20 years. It would be jarring to feel like all that is now over. That is why I believe you need to meet with an MO. Could you schedule a consult with the MO you worked with in 1997? Reviewing your personal and family history, pathology, etc and talking about what the risks are and what are the options for risk reduction would give you a chance to better understand, make choices and move forward; rather than just abruptly end care.

So sorry you are so stressed right now ((hugs))

goldie63

thank you so much for your response MTwoman. I see radiation oncologist in 2 weeks for consult, same RO as 20 years ago. MO retired a couple years ago. I used some of the wording in your post today and I spoke to one of the breast patient navigators at our hospital (which is also the cancer clinic) and got some good info from her. I will make sure I get to see MO too and make sure I am okay with planned follow up. I did get a copy of my pathology report today (will have to look up a few words) and also work form from surgeon and in that one he says hormone results are 'pending'. So now I will wait for RO appt and go from there. I was as I realized having an emotional day yesterday and I truly appreciate your input / posts

annoyingboob

there are other brca+ women here. Perhaps start a new thread and ask what others are doing

MTwoman

goldie, so glad you feel like you've gotten your team working to help you better understand and manage your risk. glad I could help and that you're having a better day today. ((hugs))

goldie63

thanks annoyingboob, good idea I started a new thread underthe Positive Genetics Test Results topic.