What's happening after mastectomy?

[Moni]

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]

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]

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]

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]

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]

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

[suzan w]

Hi! Your sister should be having MUGA screenings on her heart, I had one before I started Herceptin and every 3 months after that. I had a bilateral mastectomy with no reconstruction and used organic vitamin E oil on the scars...and it is amazing how small the scars are...just a thin white line. The general area is sort of bumpy, a little excess tissue...now my ribs show! I am working on building up my chest muscles. Cannot stress enough the importance of getting back one's range of motion!!! Start immediately even if it hurts or feels weird. Frozen shoulders are common aftereffects of breast surgery! I came home from the hospital with a pamphlet of arm exercises to do and did them religiously! My surgery was 16 months ago, I still have areas of numbness-nerve damage-but all in all I am happy with how I look and feel!!! Good luck to you all!

[tousled1]

Moni,

First, let me say that your sister-in-law is lucky to have you as an advocate. She should definitely see an oncologist as cancer is their specialty. I'm not saying that her ob/gyn doctor isn't good, it's just that when you have cancer you want to make sure you have a doctor that is current in all areas of treatment. Since she is on Herceptin standard protocol is to receive either a MUGA scan or an electro-cardiogram before you begin Herceptin and then every 3 months while on Herceptin. The reason for the test is to determine the LVEF (left ventricular ejection factor). If the LVEF drops to 50% or less then you are usually taken off Herceptin until the LVEF rises again. Herceptin can cause heart problems so you want to make sure she sees a cardiologist as well. As for cream/lotion to put on the mastectomy scar -- aloe vera works wonderful. When I was going through radiation my radiation oncologist always gave me containers of aloe vera. You can purchase aloe vera off the shelf at any drug store/pharmacy and it really does work. A good thing about the aloe is that you have to rub it in and therefore you are at the same time massaging the incision area. I purchased a DVD called "The Lebed Method, Focus on Healing." It is a DVD that contains exercises that are great for breast cancer and also lymphedema. The exercises are simple to do and can be done either standing or sitting. I highly recommend it. Again, you sister-in-law is very lucky to have you in her corner.

[Moni]

Suzan and Kate,thank you SO very much for your answers. I've been copying and pasting them to my sis-in-law with translations. Just one major question - what is MUGA?? And by the way - what is the FISH score I've been reading all over and trying to understand it. It seems that MUGA must be the same like electocardiogram... ??? If any of you could please let me know I would very much appreciate it.
Believe me, I am so torn apart being here and not really being able to help her except for doing research as good as I can. And I feel so bad not being able to go online to do research every day because of work. I've talked to her today and she feels awkward. Of course, something is missing when she looks into the mirror and it does depress her, even though in the beginning when she considered it she never thought about that fact, just get rid of the cancer, no matter what. It's very hard for me to convince her to do more and ask her doctors questions so they don't give her short answers. She told me over the phone that before her surgery one doc came into her room and she heard him discussing with the nurse inflammatory breast cancer and that one could see it even effects the skin. She got scared to death and later told her usual doc about the whole conversation. He told her that they must have mistaken her for another patient that was in the room across.... ARGH! You'd think they would look at the charts first before making comments like that and scaring patients even more.
Finally, she found a Herceptin group of women that discusses everything but she said it's just dragging her down because there is not really support coming from within the group. That's what's so much different in this forum. I absolutely love it, support from all sides, information, and a whole lot more. Thank God for the people that brought this to life!
I'm a bit nervous myself because Tuesday I'm having a breast MRI done due to fibrocystic changes... well, we'll see. The surgeon that was suppose to take a biopsy said he won't suggest doing anything before it's the size of a walnut! Well he had the wrong person in front of him that day, let me tell you. ;-)
Anyhow, thank you all very much for your information. The more info I can get, the better I can help my sis-in-law. Also, I'm trying to understand the healthcare issues. Isn't the insurance, that covered you for the initial diagnosis, suppose to cover you for the costs?

Thank you ladies and God Bless,
Moni

[tousled1]

MUGA and echo-cardiogram are almost the same thing - both test the LVEF of the heart. It's just depends on what the doctor prefers. Mine sends me for the echo-cardiogram. FISH - is a test that is performed on the tissue at biopsy or surgery to test for the HER2 factor it is considered the most reliable. And yes, it is a shock when you look in the mirror the first time, and many times thereafter. It's also something that you're really not crazy about sharing. Hopefully her husband is very patient and understanding.

I wish you nothing but good news on your MRI.

[Moni]

We are debating currently whether she should get radiation in general since thank goodness only one lymph node (so far... we are still waiting for the full results!) was effected. Her doc mentioned no radiation necessary, the oncologist and breast surgeon that was initially scheduled for her surgery mentioned radiation after chemotherapy and mastectomy - no matter what).

I told her to get her doc's opinion tomorrow and if he doesn't think it's necessary, still get a second or a third opinion - just to be on the safe side.
Do any of you have experience with this or wish they would have done radiation when they said it's not necessary?

Thanks so much,
Moni

[tousled1]

Moni,

Usually after a mastectomy the only time you get radiation is if you have positive lymph nodes. Hope this helps.

[koolbreeze]

I had a year of Herceptin. Never had a MUGA but had an echocardiogram once every 3 months. I would recommend that she sees an oncologist and gets recommendations from them. I did not have radiation. I had a mastectomy with one positive lymph node. No radiation was needed. Take care Kool

[geraldine]

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