What is the experience of the surgery for mastectomy?

I had umx without recon.  I was out of the hospital the following morning.  I took one painkiller after that.  Needed no more.  Walked down the street on day 2.  Was walking 3 miles a week after.  Ran an easy light run 3 weeks after.  Normal exercise routine about 6 weeks out.  Back at work 3.5 weeks after (though I think this was too soon).  Continued to feel easily fatigued for several months.  Able to wear silicone prosthetic 6 weeks after.  Oh...drains...one out on day 5, the other on day 10.  Hated the drains.  Glad to have them out.  Not painful, but annoying.  Rather than pain, my experience was feeling like my body wasn't my own anymore.  I couldn't just roll over in my sleep.  I couldn't just reach up over my head.  It took a while and I was grateful to reclaim ownership of my left side.

I did physical therapy starting on week 2.  That was the smartest thing I could have done.  I increased my range of motion much more quickly and without incurring lymphedema.

I suspect this would have been radically different with bmx or with recon.  I remember thinking that it was good that I had only a umx because I was much more capable immediately after surgery because I had my right side to rely on.

Wishing you all the best with your choices and surgery...

Claire

I had BMX no recon for DCIS.  I went home the same day as the surgery.  I did have a fair amount of discomfort because the DCIS side didn't drain properly, but I am now fine and very pleased with my decision.   I am back to all the activities I did before the surgery and feeling really really good.

I had bilateral mastectomy, no recon, and was in the hospital for 24 hours total. The only bad part for me was brief nausea from the anesthesia when I came to. Otherwise I had no pain at all. The drains were a nuisance, but came out after a week. I have a regular yoga practice and was able to return to full use of arms within two weeks. I had three visits with a physical therapist as a preventive measure against lymphedema but never developed any symptoms even though I'd had radiation and a full axillary dissection. It really wasn't bad.

I had a uni MX without recon after a lumpectomy and a re-excision for better margins. I was able to escape radiation because we finally got clear margins. I am on the anastrasole but have not had bad side effects. I'm 71 and it wasn't a big ordeal. I had the sentinal node removal with the first lumpectomy, so recovery from the MX was easy. Glad to hear that someone else thinks exercise is incredibly boring. 

I am so sorry that I can not report that my particular experience went smoothly. I awoke in terrible, terrible pain and have had since 1/11/11 (although it finally starting to subside). I spent two nights in the hospital.I had no idea that the amount of pain I was in was NOT normal, since my breast surgeon never fully prepared me for it. She did mention nicking nerves during the sentinel node biopsy (I later learned during the pathology report she took an axillary node as well), but never told me exactly what it would feel like.

I had developed deep and wide scar tissue adhesions that took 6 months of myofascial release to get rid of.I did all the stretches the surgeon told me to when I was healed enough. Sixteen months later, I still have problems with scar tissue.

I have severe post mastectomy pain syndrome. I have been seeing a pain clinic for medications, stillette ganglion shots, lidocaine IV infusions, and a counselor for living with chronic pain. I am better than I was a year ago, but the pain still limits how much and what activities I do. Sometimes the seatbelt still feels like sandpaper on the chest, sometimes I can't get my own seatbelt, sometimes I have to walk to the dog in a sling... It is a continual learning process of how much I can do in a day.

I  did not know about the discussion boards here and the American Cancer Society when I was first diagnosed in 12/2010. But it took a call to the American Cancer Society to ask for information about breast cancer and other questions. The gentle lady asked me if there was anything else...That is how I found out about post mastectomy pain syndrome.

Maybe for the most part, mastectomies go well, but there are those of us, who had a different, painful experience. You never know with any health treatment what side effects you are going to get. I wished I had some idea what this was really like before my surgery.

Oh, as far as drains, there is no way to predict how long anyone will have them in for. I have seen posts about women thinking about limiting activity levels to try and get drain levels down so they get them out sooner. Personally, I think that is a bad idea. If you do that, get the drains out too soon, all that fluid could build up in the chest area, rather than be drained out.

My surgeon released the pressure before pulling them out. She said if she didn't, their would still be suction and would cause pain from the drain pulling on tissues when pulled out. Having them removed for me was like tweezing an eyebrow lash.

I wish  your surgical team good skills and you a fast recovery with no side effects.

infobabe,

I'm very sorry for what cinnamonsmiles has gone through with post mastectomy pain syndrome (and I'm so sorry she's still going through it), but please know that it's not the norm. As you can tell, most of us (me included) who had a mastectomy without reconstruction experienced very little pain. For me, as well as for many other women, the drains were the worst part, and they were more of a nuisance than really painful. 

Just to clarify some things that may have been misunderstood. Even with Stage 0 breast cancer, one or a few lymph nodes are usually removed. This is called a sentinel node biopsy (SNB). These are axillary nodes, but rather than removing a large number of them only one or very few are taken out.

infobabe, you may not have heard of anastrazole but you've probably heard of Arimidex, which is the brand name for anastrazole and is one of the two most commonly-prescribed hormonals.

Also, fredntan mentioned constipation. That's usually a result of narcotic painkillers like vicodan or percoset. Fredntan also said that she had expanders (which is the first step in implant reconstruction). She herself said those were "torture" and I suspect that she had to take painkillers for that, which probably caused a lot of the constipation problem. Since a simple mastectomy usually isn't very painful, you hopefully wouldn't need many painkillers, so constipation shouldn't be a big problem.

Also, other than cinnamonsmiles, you might note that everyone else who has posted so far about experiencing a lot of pain after mastectomy (fredntan, wildrumara, and mooleen) had immediate reconstruction. Generally, a simple mastectomy is less painful that a mastectomy along with immediate reconstruction.  

Erica -



For us older, post-menopause the AI of choice is often Femara/letrozole. At least that's what I was told/put on it being 18 yrs post-meno when DX'd. The only concern that Dr. T had was that at that time time, Femara wasn't generic so quite costly. If VA would not supply it then we'd have done something different but they did so I'v e been on Femara/letrozole for 2+ yrs.

Infobabe,

 If you have the choice of just a lumpectomy and rads, I think I'd go for it.  You will have your body back in the form you're accustomed to, and your recovery will be much faster.  

 I choose the single mastectomy four years ago because I just wanted it out, was afraid of radiation, and mistakenly believed that my chances of recurrance would be less with the mast.  Well, local recurrance chances are a bit less, but distant makes no difference. Here I am with bone mets.

 Don't be afraid of the rads.  They really aren't bad at all.  I had 15 on my back for my mets and was surprised how easy it was.   Also, the docs don't make a decision on the hormonal drugs based on whether or not you had a lumpectomy or mastectomy. It all depends on the biology of the cancer and whether it would keep it at bay or not.

 Good luck with your decision.  I don't really regret my decision (I would probably be blaming my recurrance on not getting the mastectomy if I had chosen the lumpectomy) but I don't think it was  a piece of cake.   It's major surgery, and it will take a while to recover, and there may always be some residual nerve pain, and your chest may be numb.  Mine still is, 4 years later.  I also have nerve pain that shoots through my chest at times.   My onc said this is not uncommon with women who have had mastectomies.