DCIS & BMX. Still have ???? Follow up with oncologist?

I was diagnosed with DCIS in April and my DR's also said no Her2 testing. I am currently waiting to have my BMX which is scheduled for 5/31. How did everything go with your recovery?

Hi danawp: Oh I understand your concerns.  My thoughts too after surgery and I'm releaved (weight off my shoulders relief) that my BS has me on the standard of care for cancer patients at the hospital I was treated at.  For 7 years post BMX:  exams by MO or BS years 1-2 quarterly and years 3-7 twice a year.  BS's cannot remove all breast tissue in a bmx (so there is a tiny, tiny, tiny chance of a new cancer) + no hormone therapy for me despite my very, very strong ER/PR.  So while I'm not receiving any "treatment" I am under careful surveillance for many years to come.  Follow your gut and talk to your BS about getting exams from him/her. They way my BS & MO do my physical breast exams is way different than my gynocologist ever did.  They know what to feel for w/ reconstruction work too. No HER2 testing for me neither, not standard w/ DCIS. 

Dana, to your questions:

I am ER+, so I was expecting the possibility of tamoxifen.  Is it common to not need tamoxifen if you go with a BMX?  Yes, no Tamoxifen is the usual recommendation after a BMX for DCIS.  Except for those who have very close surgical margins, the recurrence risk & new breast cancer risk after a BMX for DCIS is approx. 1% - 2%. Tamox. can reduce this risk by approx. 50%, which means that at most the benefit from Tamoxifen is a 1% reduction in risk.  The risk of serious side effects from Tamoxifen is greater than 1%.  So for most patients it is better for their overall health to not take Tamoxifen after a BMX for DCIS.

I dont know my HER2 status.  My dr said they don't test for that with DCIS.  Some facilities do test HER2 status for DCIS but many don't.  This is because there is no understanding of what HER2 status means for DCIS.  Most studies have shown that HER2 status has no impact on DCIS prognosis; a few studies have shown that DCIS that is HER2+ is more likely to recur or develop into invasive cancer but a few other studies have shown that HER2+ DCIS is actually less aggressive than HER2- DCIS. So there is no conclusive information either way.  Adding to this is the fact that there are no treatments approved for HER2+ DCIS.  Herceptin, which is the drug given to women who have invasive cancer that is HER2+, is not approved for DCIS (although a couple of small clinical trials are underway).  So testing of HER2 status for DCIS wouldn't tell you anything more about your diagnosis (at least based on current medical knowledge), and wouldn't change your treatment.  

My surgical oncologist said I didn't need to meet with an oncologist. This is a gray area. Most women in your situation who've had a BMX for DCIS do see an oncologist, but with no further treatments needed, they often go for just one appointment and don't continue on with the oncologist on an on-going basis. For this reason, some facilities simply don't send DCIS patients who've had a BMX to see an oncologist at all.  If you are concerned about this, request the appointment.  There's certainly no harm in talking to the oncologist and the discussion might make you feel more comfortable with the treatment (or more to the point, the "no more treatment is necessary") recommendation. 

Hope that helps.

danawp:

They really don't know what bearing HER2 status has on DCIS. They do know how it affects invasive cancer. They usually don't test for it when dealing with DCIS because the results really don't have any meaning since they don't know how it truly affects DCIS. The only time I was offered HER2 testing was when I was considering a herceptin clinical trial, but positive margins excluded me from the trial anyways so we never did the testing.

I understand where you are coming from on the MO. Initially I was very uncomfortable with the recommendations from my BS. When my biopsy showed Grade 1 DCIS he thought this was low enough grade that he was not even planning on a RO referral. After my lumpectomy it was discovered that I had Grade 2/3 DCIS and I have a positive margin we cannot get clean. This is when I got my RO referral, but my BS did not give me a MO referral since he thought that at age 44 the SEs from Tamoxifen were not worth the benefit. However, my RO feels VERY differently about this. I have strongly ER+ DCIS with a positive margin. Radiation may clean up the margin, but my RO feels very strongly that it is not enough, and he gave me a MO referral. Saw an MO on Monday and he feels the same way. So after radiation I start on Tamoxifen.

One of the most important things I have learned going through this process is to be assertive. In the past I may have adopted a "the doctor is right" philosophy. Now I question everything. If I am even slightly uncomfortable with something I ask questions or ask for referrals to who I would like to see. I don't wait for anything to be offered. I ask for it. My opinion is that this is not a skinned knee. Decisions I make now can effect the rest of my life. So I make sure I am 100% ok with the treatment plan before I agree to anything.

Just my 2 cents worth....