Mastectomy Questions......

groucho2

I was just diagnosed with a recurrence of Invasive Ductal Carcinoma in my right breast. This is the same breast I had IDC in 16 years ago. I've had a stereotactic biopsy and am waiting to see my MO and BS on Thursday (three more days to stress).

I thought I was done with this 16 years ago, when I finished chemo for my first occurrence. This is quite a shock. I've had mammogram call backs and biopsies since my first occurrence, but I never expected to be dx'd again!

Since I had rads and chemo last time, rads is not an option this time (from what I've read), so I figure I'm looking at a mastectomy. If I can go for bilateral, I will do that rather than unilateral. I want both sides to match. I don't plan to do reconstruction.

Can anyone tell me what to expect with a mastectomy? What is recovery like? Can I use my arms at all, or I am just restricted from raising them above my head? What about sleeping? Will I need to sleep in a recliner or can I sleep in a bed? What about lifting? What are the restrictions on lifting? I just bought a new house and am scheduled to move in after June 6th. I want to know how much I can reasonably expect to be able to do. Will I need to hire people to pack for me? How long were you off work, recovering from the mastectomy? When did you finally feel "recovered"?

My spouse died 8 months ago. I don't have someone that can stay with me around the clock to help out, but I do have friends that have offered to help out. What kind of help did you find that you needed? And what were some of the just nice things that people did for you?

I appreciate any helpful information or advice you can give me.

Molly50

Hi groucho2, I am very sorry you are dealing with a recurrence. 16 years is a good run though! I had a unilateral mx with an expander so my experience is a bit different. I found the surgery itself wasn't that bad but the expander was really awful. Since you are going flat you don't have to worry about that part. You will need to put everyday items in light containers and down low to reach since you are alone. I had restrictions of lifting no more than a gallon of milk. My PS said I could begin stretching and ROM exercises as soon as my drain came out. You may want to ask your BS ahead of time what your restrictions will be and request to be sent to PT as soon as you are able. I had to have PT because I could not lift my arm out to the side. Shop and prepare some meals ahead of time. Put them in small containers in the freezer. I would also plan on sleeping in a recliner since you don't have any help. I found it hard to use my arm in the first several days. Can you delay your surgery until after your move? It is not that far away and you will need help packing and unpacking.

I returned to work at 3 weeks post op. I could have gone back at two weeks when my PS allowed me to drive but I wasn't ready. I think you need to talk it over with your surgeon. I would ask for 6 weeks off work and then you can return earlier if you are healing well.

Maine1965

Hello Groucho,

I had a BMX in early February with tissue expanders placed. The recovery is a little rough but do-able. I would say 50% of my pain came from the surgery itself and the other 50% was the discomfort with the tissue expanders. I'm not gunna lie. I was a hurting puppy the first 5-7 days. But each day got a little better. I slept in the recliner for 10 days I think. I had drains in for 2 weeks which is a week longer than most but I was draining a lot. My doctor didn't give me any restrictions on lifting my arms - his philosophy was you won't want to do it for a while so you won't do it. I just tried to do the exercises they sent me home with a little each day. My daughter is a nurse and my son in-law is in sports medicine and they were with me for about 2 weeks so they kept me moving in the right direction. I needed pain meds around the clock for the first 2-3 weeks. The first few days after surgery I was "white knuckling it" until I could get my next pain pill. And I have a high tolerance of pain. So be sure to keep yourself medicated. It's just not worth it to be pain - so stay ahead of it.

This Friday (5/6/16) I go in for day surgery and have the TEs removed and my implants put in. I CAN NOT wait!!!!! The TEs suck - plain and simple!

Best of luck to you!!

groucho2

I saw my MO and SO today. My next step is a PET scan, assuming insurance will pay for it. If not, then I will have CAT scans. After the PET scan, assuming it doesn't show any active areas, I will have a bilateral mastectomy without reconstruction. My SO said that if the PET scan doesn't show any activity in the lymph nodes, that she will not do an ancillary dissection. That will make recovery easier.

After the mastectomies, it will be on to chemo and hormonal therapy. The docs are not sure this is recurrance; they believe it might be a new cancer, judging by the amount of time it's been since my first diagnosis.

I am really worried about the move to my new house and the timing of surgery. I'd better get everything done that I can before surgery!

wallycat

Groucho, I am SO sorry you are back here. STUPID CANCER!

I had a bilateral mastectomy right out of the gate (my choice) and I honestly had very little restrictions. I know we are all different and there are gals here who have pain for years, while others of us (myself) never needed a pain med, even right after surgery.

My SNB limited how high I could reach, but that only lasted a few days. I was told to put kitchen necessities at a height wear reaching was not necessary. That was after my lumpectomy.

The drains after a mastectomy will need tending to, but that is something you can manage on your own. The hospital sent me home with little "purse-like" hand sewn things so I could hang them off my neck and hold the drains in them. A bathrobe or pajama top with pockets may also work---it was the one thing I did not plan for. Some gals purchase a big wedge pillow so it is easier to get in and out of bed and sleep. I bought one and never used it. Maybe all my yoga and stretching helped or maybe I was just fortunate. You will be in the hospital overnight after the surgery.

Start making a written list of things you anticipate and when you meet your providers, they may be able to assist you with what will be provided vs. what you need on your own.

Best to you. Congrats on the 16 years and again, so sorry you are joining us here.

Oh, there's also a mastectomy section on these boards and it may help you if you read through some of these as well. LOTS of great info with generous ladies sharing their stories.

I can't speak to your move because it depends who you are hiring, how many are helping you, bigger or smaller house, etc....Depending on how your scans turn out, maybe you could do a lumpectomy, deal with the move and come back for the bilateral mastectomy.