What's happening after mastectomy?

Moni · 10-14-2006, 06:40 PM

My best friend and sister-in-law got diagnosed in April with her2+++, has gone through chemotherapy and received Herceptin. Thank God, the tumors they had originally found were minimized to almost gone, last week she had a single mastectomy. According to her doctor, she doesn't need radiation although they removed 21 lymph nodes (one of which was cancerous).
I would like to ask you about your experiences after mastectomy, any special treatments, mood swings, depression, any food for thought is highly appreciated.

Thanks so much,
Moni

Lolly · 10-14-2006, 08:31 PM

Be sure she gets some physical therapy as soon as her surgeon clears her for it, as it's necessary to keep the scar tissue loosened up. She'll have to pay special attention to that from now on. She should try to avoid wearing any tight cuffs or sleeves, as this can increase her chance of developing lymphedema. There are physical therapists who specialize in teaching mastectomy patients special massaging techniques to help prevent this complication.
Best wishes for a speedy recovery and welcome to the board!

tousled1 · 10-15-2006, 08:13 AM

I had a double mastectomy and agree with Lolly that exercise is the most important thing. You have to use the arm and get full range of motion as soon as possible. There are physical therapists especially trained to deal with mastectomy patients and massage techniques. I've had no mood swings or depression since my surgery. I do have slight lymphedema which was aggravated by radiation and I have a sleeve Iwear when I need it. I feel it is the best thing I ever did to fight this deardful disease. Good luck to you sister-in-law.

Moni · 10-15-2006, 10:42 AM

Thank you both so much for your responses. I'll find out hopefully next week what they will decide on. I am still surprised she doesn't talk to an oncologist yet. I'll keep you posted and thanks for your support.

Thank you and good luck to you all,
Moni

tousled1 · 10-15-2006, 11:16 AM

Moni,

By your post are you saying that she has not talked to an oncologist at all? I would assume that before she had the chemo she would have had to talk to the onc in order to get things set up. I know that my surgeon sent me to an oncologist as soon as the biopsy came back positive. I then had an appointment with the oncologist and we talked about what treatment plans we could do. My onc then got my surgeon on the phone with me there and that is when we as a team decided that I would hae neoadjunct chemo (before surgery) to try and shrink the tumor. Her oncologist should be the doctor that sits down and explains everything to her. Perhaps I just mis-read your post. If I did I can blame it on chemo brain (which is a real thing).

Moni · 10-15-2006, 11:55 AM

Kate,

she's all the time talking to her gynocologist who has supposedly some knowledge of oncology. So far, it's been good. I just hung up with her to let her know about the 2 responses and she said noone in the hospital (she's at home right now) ever talked about physiotherapy for the arm. Noone told her about cremes or lotions to keep the tissue soft. There will be another meeting with the doc this week and she will talk to him. Unfortunately, she's located in Germany and I guess over there you really have to take care of things on your own. I've asked her to send me copies of all her reports and medication so I can do some research here. Also, since she's on Herceptin, noone so far (on Herceptin about 4 months) has done a check-up on her heart, not even before surgery.... Not sure if that's suppose to be the case, but I thought especially with Herceptin and the side effects to the heart this is important.

Moni

geraldine · 10-20-2006, 09:13 PM

Hi Moni,
I had a mastectomy 2001, I was supposed to have had a reconstruction after the op. Crux of this story was, cancer had spread to a lot of the surrounding tissue, so it was too dangerous to proceed. I had to have Physiotheraphy ( I also lost 24 lymph nodes..22 cancerous ). I had a wonderful Breast Care Nurse, whom I could contact at any time. There is also the cancer back up organisations and a wonderful group called the macmillan nurses, who are angels in uniforms. I know that the people I have mentioned are here in Scotland, but surely there must be the equivellent in your country..
I dont suffer mood swings as such.. although certain people might disagree....
My main problem is, I need the reconstruction "Mentally".. I have asked my surgeon on numerous occasions and have been refused. He thought it was too dangerous to go that road. I will go with his judgement, cos I do believe, I'm here because of him, but if he tells me I can NEVER have the op then I would seriously have to consider having the other boob removed. It only serves as a reminder and I do feel I need to be balanced not LOPSIDED !!!! I hope that doesn't sound too selfish ?
Some people say, that I am lucky to be here and that reconstruction is the least of my problems, well I wish it was as straight forward as that..These people, don't know what they're talking about.." There but for the grace of God, Go I " I do thank God I'm here, I do thank God I got to see my grandchildren but I also want to go back to that person, the one who wasn't sick, you know the one I'm talking about.. The skinny healthy one !! Having Cancer has opened my eyes and I do look at life differently but that doesn't mean I will lie down to this terrible disease...NO WAY!!! I have too much damage to do yet Ha Ha

Geraldine