Need to decide on double mastectomy - please comment

parris

pinkapples said:

Mastectomy with expanders
And a significant amount of pain. I also slept propped up, and/or in the recliner for quite a while. I actaully had alot of pain ( I normally have a very high threshold for pain, gave bith naturally, etc)but this set me back a bit. I found the muscle relaxers worked best for me. I definately needed a full 8 weeks, and it was even slow after that. My hospital stay was a few days and I too had trouble using my arms, had trouble breathing, and I frequently prayed I would not have to cough or sneeze!!! LOL
Having said that, I would absolutely choose this path again. Having knowledge going in makes a big difference Everyone experiences so many different things, but at least here you have read the good to the bad, and yet we have all made it...

Its a tough decision; good luck to you in whatever you decide and remember, you gotta do what's best for you :0)

BillieJean

Double mastectomy with expanders
I was also considered cancer free after my lumpectomy. I was diagnosed with stage 1 which didnt require radiation or chemo, but I wanted to do the mastectomy because of other health reasons. I had my double mastectomy with expanders 6/09. I was also concerned about the amount of pain I would have, but to my surprise it was nothing like I imagined.I took pain meds for 2 days after the surgery because of the fear of the pain, but when I stopped I realized I didn't need the narcotics. Over the counter meds was enough for me to be comfortable. For me 80% of my sensation was gone because of the mastectomy. My drains were removed 1 week after surgery and my PS started to fill my expanders a week later.

I recently had my implants exchanged and because my sensation has returned I'm in more pain now than I was then.


God Bless

Different Ballgame

There have to be other solutions for pain management
Dear Michele,

I had a contralateral mastectomy (one good breast and one cancerous breast removed). I never felt pain, but I took those pain killers. I did feel a heaviness to the chest. I slept in a high back chair from July to the end of November at which time the chair was then sent to the upholster for a new makeover. Even after those months of sleeping upright, I was afraid to sleep in a bed, but it worked out.

There have to be other solutions for you regarding pain. I hope your doctor can solve it for you.

According to my oncologist surgeon, he said that this is not as painful a surgery because the surgery is on top of the body, not inside the body. But then he has not read all the postings on this page.

Lots of Hugs,
Janelle

Different Ballgame

There have to be other solutions for pain management
Dear Michele,

I had a contralateral mastectomy (one good breast and one cancerous breast removed). I never felt pain, but I took those pain killers. I did feel a heaviness to the chest. I slept in a high back chair from July to the end of November at which time the chair was then sent to the upholster for a new makeover. Even after those months of sleeping upright, I was afraid to sleep in a bed, but it worked out.

There have to be other solutions for you regarding pain. I hope your doctor can solve it for you.

According to my oncologist surgeon, he said that this is not as painful a surgery because the surgery is on top of the body, not inside the body. But then he has not read all the postings on this page.

Lots of Hugs,
Janelle

Different Ballgame

There have to be other solutions for pain management
Dear Michele,

I had a contralateral mastectomy (one good breast and one cancerous breast removed). I never felt pain, but I took those pain killers. I did feel a heaviness to the chest. I slept in a high back chair from July to the end of November at which time the chair was then sent to the upholster for a new makeover. Even after those months of sleeping upright, I was afraid to sleep in a bed, but it worked out.

There have to be other solutions for you regarding pain. I hope your doctor can solve it for you.

According to my oncologist surgeon, he said that this is not as painful a surgery because the surgery is on top of the body, not inside the body. But then he has not read all the postings on this page.

Lots of Hugs,
Janelle

Gabe N Abby Mom

I had a bilateral, no
I had a bilateral, no reconstruction, on Jan 14th, so I'm about 8 weeks right now and I'm still adjusting. It's pretty recent that I'm able to lay on either side or on my stomach and I can't do it for very long. I'm seeing a PT to regain full mobility on the left, but I do have full mobility on the right. There is some occasional 'pulling' on the right, but that is not pain and is minor.

I was in the hospital for two nights. I had trouble with a nerve down the back of my left arm (lymph nodes removed on that side), and that was the most painful part. I wasn't about to go home until that pain was manageable. I still sometimes have trouble with it.

Definitely use something to prop yourself up in bed, as others have said. I had 3 drains and they were only irritating. My surgeons office provided post mastectomy camisoles that zipped up the front (easy to put on) and had pockets for the drains, those were very helpful.

I looked on line at photos of mastectomies prior to my surgery. I wanted to have an idea of what the scars would look like. I do not recommend this, as some of the photos are VERY scary. But you may want to ask your surgeon about photos. In my case, reconstruction might be an option for me in about a year, so my surgeon left enough skin to leave that option open. Others have the skin pulled tight, to look more like a boy chest.

I hope all of this helps. Yours is not an easy decision (where is that crystal ball?). But you're taking time to think and ask questions so I know that you will choose what is right for you. And whatever you decide, you'll get support here.

Hugs,

Linda

ElizabethB

big hugs for you
Pain meds don't seem to help me but ibuprofen 800 mg worked better then anything else. We are all different and h I have a really high tolerance to pain to begin with so when I say ouch it is OUCH ..GO WITH YOU HEART AND GUT FEELING IT IS A HARD CHOICE. YOU WILL DO GOOD KEEP A POSITIVE ATTITUDE HUGS FOR YOU FROM ME

SueRelays

Brooklynchele said:

Wasn't sure how to get my thanks to everyone at the end...
Thank you to everyone for your candid responses. I would not be considering reconstruction so perhaps that will help some. You've also helped give me some questions to ask my breast surgeon when I go back to see her (about the chest blocks, drainage tubes, etc.) I'm currently a 44DDD with the bc affected breast slightly larger due to the allergic reaction and subsequent (permanent?) swelling. Maybe the size also affects recovery.

Hugs,
Michele

Not much to add that hasn't
Not much to add that hasn't been said....had a double
masectomy a week ago...no reconstruction. As everyone
says, the drains are the worst. They're just annoying!
Can't wait to get them out! Didn't need anything for pain
other than oral vicodin. They offered morphine at
the hospital, but I really wasn't that sore. Can't reach for
things or move my arms around too much, but all in all,
I'm happy with how good I feel. Sure beats chemo!
Taking the bandages off was a bit rough...emotionally,
but with the support of others, you get through it!
Best of luck to you!!'

Faith1122

I had a dbl masectomy
I had a double mastectomy with immediate tissue expanders in Feb. I have had quite a few big surgeries like a hysterectomy so I didn't think this was too bad. The first day was painful & I had the morphine drip. After that I didn't find it too painful. The recovery is a few weeks because you have to be extra careful with the drains in. They are quite irritating & you have to heal. i have a 4 & a 6 1/2 year old so I had to have lots of help so I didn't ruin my stitches or the drains. Have the Dr. Find something you can take just in case. I wish you all of the best!