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double mastectomy

Rett
Posts: 14
Joined: Apr 2003

My girlfriend is scheduled to have a double mastectomy this Tuesday (we just found out on Friday) and we are trying to find information on what to expect afterwards. How long before she can shower? How long before she can go back to work? How long before she can weight train etc. She was a little out of it when the doctor told her on Friday and didn't ask anything. She knows she will find it all out before the op, but is hoping to get a little info as soon as possible in order to prepare herself...

Thanks

bunnie's picture
bunnie
Posts: 233
Joined: Mar 2003

hi.i had a Mastecomy in Jan and due too chemo and the type of work i do i still have not went back too work.it takes a while for you too get range of motion back into your arm and where she is having a double she will have too get both back into shape.Iam getting ready to see a physical therapist next week becase of the concern of getting lympadiam wich is a thing you can get after having this kind of surgery the doc will explain all of that too you if not ask him about it.My work is very physicaly demanding so that is another reason i havent went back yet and also they dont want me back on a part time bases.I chose not too shower until after i one of my drains out wich was about a week or two i think.i also had too have help drying off wich my wonderfull husband helped me with.I have had a very supportive husband through all of this.i hope your as supportive too your girlfriend.How old is your girlfriend?If she has any other questions she can email me at duckling@crestviewcable.com Amy

Rett
Posts: 14
Joined: Apr 2003

Hi Amy, Gerit just turned 34 - she had the mammogram on her b-day :-( It is a recurrence of high-rate DCIS in the left breast. Her mother died of breat cancer 14.5 years ago. We are both living in Berlin,Germany - she is German, and I am a Canadian who immigrated about 2 years ago. I've learnt German from her (she speaks very little english) and thus am not yet fluent in it, and need to seek info off of english sites in order to really clarify things in my head. The trick with that is that most dictionaries don't have translations for medical words.

Anyhow... as it is DCIS she is not expected to have any lymphnodes removed, nor does she want to have reconstruction.

I am trying to be as supportive as I can, moving in temporarily to help her out with things, doing shopping and helping out with whatever I can, but I think more importantly being there for her emotionally. I am really proud of her and how she is handling everything. She is one hell of a woman.

Anyhow as her english is not so good she would not be able to email you, would it be alright if I continued as a go between, and wrote you myself as questions arise??

bunnie's picture
bunnie
Posts: 233
Joined: Mar 2003

Hi yes that would be more than allright if you emailed me.I do not have a problem with that.If you have any more questions fell free too ask and all try and help as much as posible and if you want to direclty email me at the address i gave that would be alright too.Good luck with everything and you sound like your a very loving person she is very lucky too have you.Amy

FresnoD
Posts: 12
Joined: Feb 2003

I had double mastectomy almost 3 weeks ago but didn't have any node disection. I had reconstruction at the same time using tissue expanders. I was told that I would be off work for 6 weeks and I sit at a computer all day but I think it will depend on whether she has to do additional treatment like chemotherapy and such but at a minimum I think she will be doing very little for 6 weeks. My doctor has told me no exercise at all. It's been almost 3 weeks and I am still in quite a lot of pain so I haven't been to energetic anyway.

As far as the shower is concerned I was told I could take one when I went home because they cover the incisions with a plastic tape so you can shower. They don't want you to stand under the shower and let the water hit you directly but you can shower with your back to the water so it doesn't hit directly. I got a bench for my shower so I could sit down while showering. My drains came out after 1 week which was really nice. Then the plastic covering came off at 2 weeks and the incisions look pretty good.

Best wishes with the surgery.

Diane

Rett
Posts: 14
Joined: Apr 2003

Hi Diane,
We are not sure what kind of post-op treatment(or if any) there will be. I guess we will have to wait for the histology results to know for sure. The last time after her lumpectomy she had radiation therapy and then, here in Germany they recommend you go away for a 'kur', that is a 4 week period where you recover from major illnesses.

Showering wise, her bath is more one where you sit in the tub and can use the shower head - I am wondering though if she will actually be able to get out of the tub if she does that - I am thinking perhaps not... as she would most definitely have to use her arms to help herself up... looks like maybe we will have challenges there...which will drive her nuts as she loves her baths and showers... I am sure we will figure something relaxing out..

thanks for the info and the good wishes...

raku
Posts: 23
Joined: May 2003

Sorry to hear your girlfriend is having a double mastectomy. I had a double mastectomy May of 2002. I was surprised to hear how quickly they schelduled her surgery. I had a little extra time between diagnosis and surgery so I was able to get a second opinion and actually decided to have surgery with the second institution...M.D. Anderson). Doesn't sound like she is going to have reconstruction at the time of surgery so that will probably affect her recovery time. I wanted to have reconstruction surgery at the time of the double mastectomy but didn't qualify (had an infection). I went into the hospital at 6 a.m., had surgery, overnighted in the hospital, was meant to be released the next day but stayed an extra day due to complications. Make sure your girlfriend takes some soft, pull- up pants and a big, soft, button up the front, top if she wants to leave the hospital in her everyday clothes. Make sure she has clothes at home that button up the front...like her P.Js. She will have drains after surgery and it really helped me when I was able to pin them on the my P.J. bottoms. Also, have extra pillows on her bed (not the super fluffy kind) so she can prop herself up. The pillows will give her extra support in bed.
As far as when she can shower, that will be up to her doctor. My oncologist surgeon said after about a week. The doctor treating me for the infection told me not to get the stiches wet so I had to wrap my chest in plastic wrap when I showered. I also had a shower chair which came in very handy. How long before she can go back to work? My drains (two) didn't come out until the last possible day so I was a little slow on the recovery. I think they can out at week 4 and I was strong enough to drive at week 6. From what I have read week 6 seems to be the average amount of time for the recovery period. I took longer but I know of some women "bouncing" right back after a month. Be very careful with resuming weight training until she has researched the subject of lymphedema. I don't know if she is going to have any nodes removed. I had a sentinel node biopsy (they removed two) and am having problems with lymphedema. If the hospital where she is having her surgery has a patient medical library or telephone help-line she can find out more information before resuming an exercise program.
I didn't know this at the time of my surgery but she will probably qualify for a visiting nurse. My husband and mother changed my dressings, etc. and it was very strssful so if she can have a visiting nurse I would recommed having her look into it. Also the American Cancer Society (the website we are on now!) has a great program called "Reach to Recovery". I went to a group meeting at the hosiptal I was at and we talked and they gave me a bra that hooks up the front that you can add soft "stuffing" (into sewn pockets). My doctor also referred me to the program and a volunteer came out to my house to talk after my surgery.
I think your friend is smart to want to find out some information in order to prepare herself. If possible, it might be a good idea to have a spouse/friend/relative/trusted person go with her to her doctor's appointment to take notes. I hope it all works out well for your friend. Take Care.

Rett
Posts: 14
Joined: Apr 2003

Hi, Since this is the second time round for Gerit, she has an extremely good relationship with her medical team. The surgeon is amazing - his last work was incredible - I have never seen such beautiful scar tissue - thin and perfectly round. He is an oncologist, a gynecologist and a plastic surgeon, so we are really really pleased to be in his care. He gave Gerit a choice of when she would have the surgery and she wanted it as soon as possible. This makes sense for us both, as it is clear what needs to be done, and she wants to get on with her life (incl school) as soon as possible. Waiting would drive her (and me!) nuts.

Overhear they tend to keep you in the hospitals longer than in Canada and the U.S. She is scheduled to be in the hospital for a minimal of 5 days.

Thanks for the wonderful tips about the button up clothing, and extra pillows.

It doesn't look like she will have any nodes removed, and I am not sure how long before she can go back to work. I am trying to get her to write a list of questions for the doc but it's a little against her personality (big grin). Usually I go with her to the doctor appointments and help her out, but the last one she needed to do it alone (i.e for herself) as she was a bit overwhelmed and didn't think she could do it with someone else there...

SweetSue
Posts: 219
Joined: Feb 2003

I had a double mastectomy in March...still a bit swollen.
Please have someone be there for your friend, when the bandages are removed...it's a bit difficult emotionally and physically difficult to get the bandages off around the draining tube areas.
My mom died of breast cancer, when I was 13....so I have a sense of what your friend is experiencing.
Take care and God bless you for being there for your friend;many people disappear.
Sweet_onion

Rett
Posts: 14
Joined: Apr 2003

I will definitely be there for her throughout the whole thing, and thankfully this is something that she really wants as well. Her surgery is in 2 hours, and at her request I will be gladly there when she wakes. Although she has thought about the possibility of this operation for years and years, we both recognize that it will still be an emotional process. I am a photographer, and she agreed to model for me about a month before the mammogram that showed the reocurrence. Afterwards, she decided she wanted to continue the process and we did another photo shoot the day after the biopsie confirmed things and she realized she would lose her breasts. Thankfully the photos from both shoots are some of my best work. Last night she was again talking about the next shoot and how she was looking forward to it in order for us both to relate to her new body. I think this process is a great strength for us both... the photos will show the beauty she is with or without them... and the love that I feel for her with or without them...

SweetSue
Posts: 219
Joined: Feb 2003

forgot to mention....my double mastectomy with 16 lymphnode removal was an out -patient procedure

jeancmici
Posts: 682
Joined: Feb 2001

To have what you did on an out-patient procedure is criminal. I am curious where this took place. You are one brave, strong woman. I wish you a healthy future.
Jean

SweetSue
Posts: 219
Joined: Feb 2003

Jeancmici, I had my double mastectomy done at a reputable hospital in Michigan.
Thank you for the compliment...I am a strong woman...I have to say because many people were praying for me. One Sunday morning (before my surgery), I was lying in bed and felt a warm sensation throughout my body and then a feeling of elevation. I know I felt prayer at that moment. The most difficult part was trying to get the bandages off , especially around the tubes.
Thanks again.

Rett
Posts: 14
Joined: Apr 2003

Just wanted to let all of you know that G. is doing great. The surgery went off without a hitch this morning. She has a little pain which I imagine will get worse, but otherwise she is doing amazingly well. She ate a light dinner, and went for a short walk with me. She is being good and asking for help when she needs it... she is my hero... thanks to all of you for your support and info...

sandytrif525's picture
sandytrif525
Posts: 107
Joined: Jan 2003

Rett, Although I have not posted to you, I just wanted to you to know that I have been praying for you both. Glad that the surgery went ok. I will pray for continued strength and healing. I am glad that you are there for Gerit. I know that some people can't handle it and leave. Thanks for staying. I hope the new photos come out beautiful. God blessings on you both. Sandy

bunnie's picture
bunnie
Posts: 233
Joined: Mar 2003

sorry it has been so long for me.but just wanted too let you know that iam glad everything went good for your girlfriend and thanks too you for sticking by her.it shows how much you really care for her.I wish her speedy recovery.Bunnie

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