need advice about what to expect in recovery from bilateral mastectomy

mscherryames

Hi - I'm a nurse with a dear friend scheduled for surgery 12/21/09. She is trying to plan the type of help and supplies she will need in recovery and asked me to post this topic for her and monitor the responses. We'd like advice from anyone who has gone through her type of procedure on the nitty gritty day by day recovery and tips for the type of help to set up. Here's a summary of the procedure information that her husband prepared:
* it will be a double mastectomy. Left breast had 3 tumors so lumpectomy is not possible. right breast is clean, but has fibroid tissue, and the double is a peace of mind / protective measure.
* the one lymph node biopsied was positive for cancer, so lymph nodes will be removed.
* we'll try implants first, so tissue expanders will be placed under the chest muscles on the same day. 6-7 weeks of radiation will follow after sufficient healing from surgery and adequate expansion.
* there is not enough fat & tissue for a tram flap reconstruction. and we are saving the back muscle as a Plan B in case the implants don't work due to impacts from the radiation.
* not sure if it's material, but the mastectomy will remove ~D cup breasts-- so the amount of tissue removed is significant, and the tissue expanders will be somewhat big too (they're placed with some fluid in them, and then further filled over the next 2-3-4 weeks)
* estimate of 10-15 lymph nodes will be removed
* we're told ~2 nights in hospital post-surgery
* we'll then be home in our 2nd floor, 2 bedrm apt with our toddlers. elevator building. plan to have live-in sibling help, and to get friend/nurse help as necessary. will have meals delivered.
* as we understand, no lifting children for ~3 weeks, though after the drains come out at ~10 days, having them lifted into her lap may be fine, as long as she's wearing a good padded jog bra.
* I'd appreciate help preparing for the little details, and even for the worst case side effects or issues. I like to get accustomed to the worst case SLOWLY and in bits, and have plans in place to deal with it, and then be happy when things go even better.
Thank you anyone who can help us prepare. The pressure feels on because of the holiday timing and 2 year old twins at home. Looking forward to hearing from you.

sherria49

Sorry.......
I wrote this rather long post for you and I didn't save prior to posting and it just went off into cyberland. lol It's rather late here so, I will re-type & copy to make sure it post correctly tomorrow. No worries we are here for you & your friend.

I just came home from my bilateral on Saturday so things are still fresh in my mind.

Will post soon!!!

Huzzzzzz ~ Sherri

tommaseena

sherria49 said:

Sorry.......
I wrote this rather long post for you and I didn't save prior to posting and it just went off into cyberland. lol It's rather late here so, I will re-type & copy to make sure it post correctly tomorrow. No worries we are here for you & your friend.

I just came home from my bilateral on Saturday so things are still fresh in my mind.

Will post soon!!!

Huzzzzzz ~ Sherri

My experience
I was diagnosed 12/8/08 with DCIS w/invasion.
I had a double mastectomy with tissue expanders put in on 2/2/09 very little discomfort home on 2/4/09. My lymph nodes were clear.
I have had fills since then 60cc at a time.
I will have the tissue expanders taken out and silicone implants put in 11/10 which is a day surgery procedure.

I started chemo 3/10. I did not or need to have rads.

I have a 6yr old very active boy-single mother-work full time.
I took a month off for the double mastectomy and will take one week off for the exchange.

Keep us updated.

Hugs,
Margo

sherria49

I had a double masstecomy
I had a double masstecomy w/expanders & port placement on Friday 10/30, was able to go home on Saturday 10/31.

Although everyone experiences pain at different levels, mine was minimal. I'm still awaiting results from lymph nodes.

Things to take:
very comfy pj's, button up the front nothing pull over
slippers, I hated the slip resistant socks
to come, I suggest sweat pants, nothing with zippers or buttons
and an oversized button up shirt again, nothing pull over

I actually ended up just wearing my pj's home from the hospital.

Things at home:

I don't have small children, but I do have a small dog that loves to jump up on the bed.
So we put up a baby gate, so I didn't feel so confined & isolated.

Extra pillows to keep arms elevated, helps with circulation.

I also had a small snack tray next to bed, so I wasn't asking for something from someone all the time.

I purchased a lanyard and attached the drains to that, to keep them from under my arms.

I hope this helps your friend & yourself prepare for the road ahead.

Keep us posted & we will keep you & yours in our thoughts & prayers.

Big warm fuzzy hugzzzzzzzzzzzzz ~ Sherri

sandycr

My Experience
I had a double mastectomy on Oct. 6th with tissue expanders. I had a 3 day stay in the hospital. I had some pain but kept it under control with the Pain medication AND muscle relaxers. My advice-be consistant with your pain meds. While in the hospital you will have to ask for it each time so have your nurse write down on the board in your room, the next time you can have your meds. This way your not having to try to remember. You will be sent home wearing an elastic band around your chest, I found this to be much more comfortable than a sports bra. You will feel a lot of tightness around your chest area because of the Expanders so take your meds as needed. I stopped taking my pain meds once I got home but continued with the Muscle relaxers for another 5 days. Do remember that the tightness will lessen with each day.

Once home, I slept in a recliner for the first week and a half then moved to my bed with lots of pillows. I still don't feel comfortable laying flat on my back. Prior to my surgery I visited our local Breast Cancer Resource Center where they gave me a camisole with small pockets sewn on the inside to hold my drain bulbs, this was very helpful. You will need button down shirts only. Your range of motion of your arms is very limited at first. You will need help with bathing/showering, brushing your hair etc. Most of all you will need a lot of rest.

I hope this will be helpful to you and your friend. Best of Luck.

lisamcsherry

me too!
I'm scheduled for unilateral surgery and reconstruction on 11/12 (soon!!!!! ulp) so I am paying a lot of attention to this thread.

Wolfi

Bilat - no recon
Hi.

I had a bilateral without reconstruction in August.

Some "worst case side effects" I dealt with were being very tired and ending up with constipation and range of motion problems after surgery (most of this could have been avoided if my discharge nurse at the hospital had told me everything).

Ask questions, get help from others, and make sure your friend doesn't try to do too much. I remember trying to go for walks the week after surgery. I could make it down to the end of the block and was so tired I had to come home. If you live on the 2nd floor don't be surprised if she can go down and back up without going anywhere else (for exercise). I was shocked at how much energy was pulled out of me because of surgery (and now radiation).

Having food delivered or brought by family/friends is VERY helpful (especially with the two year old twins). Making food can be difficult after surgery and caregivers (like you) will get worn out, too. I have two teenagers and between them and my husband I don't have to worry about cooking, but it would have been nice if people had continued to bring over some food while I was going through radiation, too. Just having to go to the grocery store is tiring enough.

Make sure she has enough soft, button up shirts and pajamas (in a slightly bigger size) for comfort. It is sometimes very difficult to raise your arms up after a bilateral (especially when the drain tubes are in).

Extra pillows for the bed and couch/chair where she will be sleeping and resting are helpful so she can stay in one place. I used one pillow under my head and one on each side of me in bed so I couldn't roll on my sides and pull on the drain tubes while I was sleeping. It worked.

Make sure you also get enough rest so you can take care of your friend as she needs you.
I hope this helps. Take care and continue to post - this is a great site for questions.

Calleen

Wolfi said:

Bilat - no recon
Hi.

I had a bilateral without reconstruction in August.

Some "worst case side effects" I dealt with were being very tired and ending up with constipation and range of motion problems after surgery (most of this could have been avoided if my discharge nurse at the hospital had told me everything).

Ask questions, get help from others, and make sure your friend doesn't try to do too much. I remember trying to go for walks the week after surgery. I could make it down to the end of the block and was so tired I had to come home. If you live on the 2nd floor don't be surprised if she can go down and back up without going anywhere else (for exercise). I was shocked at how much energy was pulled out of me because of surgery (and now radiation).

Having food delivered or brought by family/friends is VERY helpful (especially with the two year old twins). Making food can be difficult after surgery and caregivers (like you) will get worn out, too. I have two teenagers and between them and my husband I don't have to worry about cooking, but it would have been nice if people had continued to bring over some food while I was going through radiation, too. Just having to go to the grocery store is tiring enough.

Make sure she has enough soft, button up shirts and pajamas (in a slightly bigger size) for comfort. It is sometimes very difficult to raise your arms up after a bilateral (especially when the drain tubes are in).

Extra pillows for the bed and couch/chair where she will be sleeping and resting are helpful so she can stay in one place. I used one pillow under my head and one on each side of me in bed so I couldn't roll on my sides and pull on the drain tubes while I was sleeping. It worked.

Make sure you also get enough rest so you can take care of your friend as she needs you.
I hope this helps. Take care and continue to post - this is a great site for questions.

I had
Bilateral with immediate reconstruction using my own body tissue from my belly on 7/29/09.. Surgery lasted 9 hours..The worst part was the annoying drains. I came home in a surgical bra so I pinned them to the bottom edge of the bra. Then when I took a shower I would use the tie from my robe around my neck to pin them to while I showered. Also I had a chair in the shower and my Daughter stood by handing me what I needed. I tried to sleep in my bed at first but that was a disaster. a recliner is best until the drains come out becasue your not supposed to sleep on your side. a pillow under my knees a pillow in my lap. my favorite comfy blanket over me at all times. When it came time to drive or go to the doc, I used a small pillow between me and my chest/seatbelt. Drink plenty of fluids to flush out the meds from surgery. I didn't take any pain meds after first night of surgery. I had discomfort but not pain. BUT I may be the exception too... I could eat anything right away. but the smell of fish about made me puke...You might want to cook some cassaroles, favorite sauce's ahead and freeze. I was driving within 2 weeks and back at work in 7 weeks.. I slept as much as possible so I could heal really good!! oh and a personal touch.. I bought a journal and while I was having surgery my loved ones wrote me personal messages. I will always treasure that book!! It made me cry when I read the sweet messages from my Loved ones!!! And my Grandaughter took pics of the activites going on in the waiting room while I was having surgery...

Calleen

mscherryames

Calleen said:

I had
Bilateral with immediate reconstruction using my own body tissue from my belly on 7/29/09.. Surgery lasted 9 hours..The worst part was the annoying drains. I came home in a surgical bra so I pinned them to the bottom edge of the bra. Then when I took a shower I would use the tie from my robe around my neck to pin them to while I showered. Also I had a chair in the shower and my Daughter stood by handing me what I needed. I tried to sleep in my bed at first but that was a disaster. a recliner is best until the drains come out becasue your not supposed to sleep on your side. a pillow under my knees a pillow in my lap. my favorite comfy blanket over me at all times. When it came time to drive or go to the doc, I used a small pillow between me and my chest/seatbelt. Drink plenty of fluids to flush out the meds from surgery. I didn't take any pain meds after first night of surgery. I had discomfort but not pain. BUT I may be the exception too... I could eat anything right away. but the smell of fish about made me puke...You might want to cook some cassaroles, favorite sauce's ahead and freeze. I was driving within 2 weeks and back at work in 7 weeks.. I slept as much as possible so I could heal really good!! oh and a personal touch.. I bought a journal and while I was having surgery my loved ones wrote me personal messages. I will always treasure that book!! It made me cry when I read the sweet messages from my Loved ones!!! And my Grandaughter took pics of the activites going on in the waiting room while I was having surgery...

Calleen

thank you all - very helpful
Thank you all for your detailed and helpful posts. I've made a list of ideas for supplies and it's much easier to figure out how many friends to schedule for help shifts. I truly appreciate everyone taking the time to give us advice, and I know it will make the recovery period easier. Best to all, and if anyone thinks of more, please write in. I see similar questions coming up periodically, and will keep looking on this great site. I'll also let you know how it goes. Thanks again, we feel much more prepared.