DCIS (ductal carcinoma in situ)

lefty7

Diagnosed with DCIS in 2006. Underwent lumpectomy and radiaion, along with taking Tamoxifen. Just found out that treatment didn't work well, and DCIS has "re-occured". My doctor has suggested a simple mastectomy with recontructive breast surgery. I would like to get a second opinion but how do I find a reputable doctor? I don't know anyone that has gone through this and I don't want to just "pick a name off a list?". Any suggestions would be appreciated. If (and I probably will) I choose the simple mastectomy, what can/should I expect?

Christine Louise

I am satisfied with my
I am satisfied with my decision to have bi-lateral mastectomy (DCIS and Invasive Lobular Carcinoma) with immediate reconstruction six weeks ago. I like knowing the breast tissue is gone. My expanders are as full as I want now -- small, like I was before. For me, having "breasts" immediately helped lessen the shock of the mastectomy, I think. It does make for about a 6-week recovery instead of the 4-week recovery you would have if you choose to start reconstruction later or not reconstruct at all. The expanders are uncomfortable sometimes, but that's easily controlled with non-prescription pain meds and/or valium to relax the chest muscles. All in all, the process has been smoother and far less painful than I'd feared. There are odd feelings, certainly, as the nerves get pretty disturbed by the surgery. It's not a walk in the park, but it's do-able.

My primary care doctor referred me to my breast surgeon, who suggested the plastic surgeon and the oncologist. I live in a metropolitan area where there are lots of medical options. Friends suggested surgeons for second opinions but I felt confident with the first docs. Can you go to a local support group and get recommendations from the women there? Do you have local chapters of any of the major cancer associations where you could talk to someone about doctors? My plastic surgeon offered to let me talk to some former patients if I wanted to -- if you "pick a name off a list," perhaps you could talk to former patients about their satisfaction with the surgeon.

Good luck in making your decision!

Cairmaid

If you're the church-going type
My pastor offered to refer me to other church members who had been treated for breast cancer, if I needed to talk to someone. If you have a favorite professional confidante, maybe he/she can help you connect with others who can help you decide on a second-opinion doctor.

ealong1

DCIS Mastectomy
I had a single mastectomy. If I had it to do over, I would have gone with a double. Ask your primary for other doctors. Ask friends. Remember, the referral network for doctors is very profitable, so friends and acquaintances might be able to give you a more objective opinion of a surgeon.

I was diagnosed on Jan 8 last year and was completely finished with reconstruction by August. That's not to say that it's not uncomfortable sometimes still, but it's still kind of new. The expanders are really strange, like going to get the tire filled every other week, but it's only for a little while. I hope everything goes well for you. I'm so sorry to hear that it reoccurred.

sunny_girl

second opinion
So sorry to read of your recurrence... but thankfully of DCIS not invasive cancer.

The best cancer centers are usually associated with major teaching Universities. I'd recommend going to one for a second opinion and treatment plan, even if you can't receive all/any of your treatment there. They should be the most up-to-date on research for your specific cancer profile. Sloan/Kettering (NY), MD Andersen (Houston), UCLA, Johns Hopkins (MD), and others... depending on where you live. These breast cancer centers usually have multi-discipline groups of doctors who plan your whole treatment, not just piecemeal procedures. They usually will do a consult without you going there if you have your pathology and history sent to them, if traveling is not feasible.

You also want to be sure the surgeon who does your procedure is an breast oncology specialist, and that the surgeon has performed the procedure you want MANY, MANY times, as has the hospital he/she uses.

Good luck with your treatments.

mimivac

Second opinion
I agree that you should visit a major cancer hospital or teaching university for your second opinion. Tell your surgeon or primary care physician that you want a referral to a major cancer center for a second opinion. Then call and make the appointment. They will usually ask for all your test films and reports a week or so before the appointment so think about getting all those together as well. It's always a good idea to get more input before proceeding. Good luck. You'll be fine.

Mimi

Ritzy

mimivac said:

Second opinion
I agree that you should visit a major cancer hospital or teaching university for your second opinion. Tell your surgeon or primary care physician that you want a referral to a major cancer center for a second opinion. Then call and make the appointment. They will usually ask for all your test films and reports a week or so before the appointment so think about getting all those together as well. It's always a good idea to get more input before proceeding. Good luck. You'll be fine.

Mimi

So sorry about your
So sorry about your recurrence. You should get a 2nd opinion. Is there a cancer center close or a major hospital that has a special cancer division? Good luck to you!

Sue