Diagnosed with DCIS: How do I decide on treatment?

I had my lumpectomy on August 16th, for DCIS. I had a lot of swelling and drainage, and was taken care of by public health nurses, who were in constant contact with the surgeon. The surgeon explained that due to the type of tissue in my breast , he had to do more work than normal for a procedural lumpectomy.I was told my lumpectomy was major surjery and I had 6 weeks of restrictions instead of 3. My next visit with him was exactly 3 weeks later. He did not get enough margin for clear pathology and a hematoma formed in the site. He said the hematoma needed to be removed and more tissue for the pathology report needed to be taken a.s.a p.. I had the surgery that same night. I am 100% better but now very anxious .I go back for pathology tomorrow morning and have appointments already booked for both radiation and chemo doctors. I received that call about those appointments yesterday. I hope my visit tomorrow gives me clarity. . . . .

My next surgery is on September 28th and hopefully I get clear margins.

I am also nervous about doing 4 weeks of Radiation and the side effects of Tamoxifen. Ugh, this is just a lot to have to think about!!

Are you all healed from surgery? When do you start your Radiation?

I was diagnosed with DCIS after biopsy. I've had three lumpectomy's and am waiting on results from the third one. The last lumpectomy I had done I switched to a breast surgeon specialist and not a general surgeon. I would recommend going to a specialist. I wish I had the 1st time. Honestly the lumpectomy was not very painful. My breast was sore for a couple of days and wearing a bra day and night was a bit uncomfortable. I am just mad about this being my third surgery. I am more worried about radiation and how safe it is?. I have also heard some people have bad side effects from tamaxoflin. I know the MAO clinic has a utube video with a panel of doctors questioning whether this is being over treated. If they do recommend a lumpectomy I would go to a breast surgeon specialist. Good luck to you.

I just had similar surgery and am waiting on pathology report. I am learning new information through this group. Now I will think about getting two opinions on treatment, clear margins etc.
I got two opinions before picking a surgeon so it makes sense to see two oncologists too. Thank you for sharing.

cfetoday,
I wanted to let you know I met with the new surgeon and he was awesome. He wasn’t surprised and agrees with my Oncologists that more needs to be taken out.

He also said that since DCIS is invisible, sometimes it does take more than one try to get clear margins and that he had to go back 4 times with one of his patients. I don’t think it’s extremely common, but good to know that apparently it does happen sometimes.

According to the Mayo Clinic DCIS IS cancer. "Ductal carcinoma in situ (DCIS) is the presence of abnormal cells inside a milk duct in the breast.
DCIS is considered the earliest form of breast cancer. DCIS is noninvasive, meaning it hasn't spread out of the milk duct and has a low risk of becoming invasive." Source: https://www.mayoclinic.org/diseases-conditions/dcis/symptoms-causes/syc-20371889

I think you did. After the first surgeon could not get it the 1st 2 times for me. I went with a more experienced surgeon. I pray this is it for me. Will research the radiation after I get a clear margin.

Yes I am also concerned about the conflicting opinions!
Possibly the surgeon I have been using just doesn’t have enough experience and that is why? She had a surgery opening last week, but I declined and decided on getting a second opinion.

The surgeon that I am meeting with tomorrow is the one I had initially wanted (he was on sabbatical when this all started so I couldn’t see him) and he has lots of experience and is supposed to be the best.
Fingers crossed I made the right decision!

I feel for you too. That seems kind of ridiculous that the surgeon would give you clear margin and then the others would not concur. Very frustrating. The only thing is knowing that your not alone with these conflicting diagnoses.

I’m sorry you are going through this and ugh, I hear ya!
I will also be having my 3rd surgery coming up. My surgeon said I had clear margins and would not need to take anymore out and then I met with my Radiation and Medical Oncologist’s and they both agree my margins are way too close and do need more taken out before I can start Radiation.
I have had a couple complications from the other 2 surgeries and I am actually not too impressed with a few things my surgeon has done, so I have an appointment with a different one on Monday for a consultation. Hopefully it goes well and this is the last surgery!
I really hope you get your Path results soon. The waiting is the worst!
And praying you now have clear margins!