In a tight time spot … will respond in full later. Bottom line recovery went well.

Polianad22 hi!

So, I had a multi centric IDC with a tumor at 9 o’clock and 6 o’clock on the right breast. A lumpectomy would have meant a good bit of deformity and definite radiation. I opted for a unilateral mastectomy on the right with reconstruction (tissue expander) at the time of surgery. I also had 2 positive sentinel nodes and 5 nodes above those ( next in line) were negative. So 2 sentinel nodes and 5 axillary nodes removed. THAT part of the surgery is the most … weird… I would say because the nerves are severed…so weird vs painful but I have gotten a good bit of sensation back under arm ( and down to elbow on underside of upper arm) I’m now getting back sensation on top half of breast and along vertical surgical line; I always had good sensation on the left side of right breast ( away from armpit).

I was same day surgery and only took one narcotic med at home that night then switched to Tylenol then Advil. The drains are cumbersome and annoying … two-3 weeks and things get easier after those are gone! But I have good tolerance for pain and felt ok from the surgery but foggy from anesthesia. I walked several times a day and up to a mile by day 4. It helps to walk.

Sleeping half sitting up for 4 weeks is not the most comfy but neither is lying down! But it’s short lived and then you can lay on your side. At 2.5 months after exchange surgery I can lie face down with a bit of pillow support ( surprised me)!

I heal well in general and I did not have trouble with the surgery per se. I took the antibiotics for 2 weeks. As I healed and got more sensation back the expander got less comfortable ( and mine sort of dropped off a chest wall support suture so it was awkward) . 5 months later I got my exchange silicon implant. It’s not like having your natural breast back, but it went well and is pretty comfortable. Much improved from expander. No more armpit surgery so much easier second surgery.
RADIATION:
So… first off my breast surgeons did not think I needed radiation and recommended AI for 5 years but… suggested I speak to oncology. Oncology wanted me to have a Referral to radiation oncology… who said hands down YES… standard 5 day/5week radiation protocol.

But I did A LOT OF RESEARCH Compulsively reading every article published for 10 years! I was not convinced and I was concerned about side effects.

Finally I found a clinical trial called TAILOR RT ( it is to radiation what the ONCOTYPE ( developed from TAILOR DX) is to chemo . MSK was a participant. One arm of trial is AI only and one arm is AI PLUS standard protocol radiation. If you read the trial it says up front … for women meeting a particular profile we are NOT SURE if radiation is necessary… so… a trial to find out.

I met the BC profile requirement to join the study BUT for a non BC reason I was eliminated ( I had an early colon cancer, surgically removed, no nodal nor any other treatment … 2 annual clean colonoscopies… etc BUT the study required 5 year interval if any other cancer was in your history and I was only 3 years. SO… because I had qualified from a BC perspective and they cannot offer an inferior arm in a clinical trial … I proceeded with my own “ AI treatment Arm” so to speak which I could have been randomized into anyway. PS Had I been randomly selected into the radiation AI arm of the study it was likely that I would have opted out.

The radiation oncologist who said I absolutely needed radiation , telephoned me and wished me luck said it was a great study and she hoped I got the AI only arm because she knew it’s what I wanted.

Radiation as a standard protocol is definitely under investigation including lower amounts and fewer treatments. It’s definitely worth looking around . That said, there is a very PARTICULAR BC PROFILE where this hopefully great option is offered. I was lucky that I fit the BC profile and therefore felt safer to forgo radiation.

I hope this helps you as you gather your information and make your decision. We each have a unique journey. I wish you the best and hope to hear from you as you progress. 🌸