What can I do to prepare for a double mastectomy?

I just completed 16 weeks of Carbo and Abraxane and I am scheduled for a double mastectomy on July 16th.

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DrAttai (Physician - Surgery - Breast (Verified) ) - 06 / 17 / 2012

I think there are 2 levels of preparation, physical and psychological. And unfortunately no matter how well you research and talk to others, you may find that you're just not nearly as prepared as you like.

First I would make sure you have gotten all the information regarding treatment options. Is a bilateral mastectomy recommended (and if so, why) or is this your preference? Information should be provided on the recommended treatment for you and your type of cancer, and if you decide to do something different, make sure you fully discuss this with your physicians and ask for the pros and cons related to your decision. In addition, make sure you meet with your breast surgeon and plastic surgeon (if you are having reconstruction) to get information about how long the surgery will last, how long you will be in the hospital, will drain tubes be placed (usually they are - ask about how long they will be in place), what pain medication will you be taking while in the hospital and once you go home. Size and location of scars is important for many women. Also, be sure to ask about the rates of infection, bleeding (will transfusion be needed?) and how common poor wound healing and other potential complications are and are those complications anticipated based on your medical condition, prior chemotherapy the need for radiation therapy, etc. Realize that even with "immediate reconstruction", it is often a several-stage procedure - more than one operation or procedure is usually needed. Also don't forget to ask questions about activity restrictions after surgery - what you are not "allowed" to do and what you probably won't feel like doing.

As far as psychological preparation, I think this is even more difficult and variable. No matter how much you are mentally "ready" for the surgery, it's rare that I find a patient who wants to have her breasts removed. It is hard to prepare yourself mentally for the new appearance as well as the pain and physical limitations that may result from the surgery. By thoroughly researching your options, you can at least be reasonably comfortable with your decision. But having a good support team, whether it be family, friends, co-workers, therapists, etc - people that know you and will be a sounding board for the potential emotional turmoil after surgery - is very important.
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Shared Experiences

member2721 (Survivor (2 - 5 years)) - 06 / 13 / 2012

I had a double mastectomy 1.5 years ago. Emotions and uncertainty were at an all-time high. I found that an extra session with my plastic surgeon was valuable. We were able to discuss the real long-term effects and how I would look immediately after the mastectomy and the plan for my future reconstruction. My aim was to look ahead instead of worrying about the mastectomy. I tried to focus on what it would be like a year or two down the road after the surgery. As with any surgery, there is pain and discomfort for a little while. Having your breasts removed is another layer to surgery because they are a part of our anatomy that is certainly seen! Before my surgery, I asked both my doctors questions….. lots of them…. even stupid ones. I also kept a diary to document diagnosis, doctor visits, day before surgery feelings, etc. Most of it is a blur now. Sometimes I look at my chest and think how weird it is to have implants, and sometimes I look down and go “wow!”. Understand how your surgeon is going to do the surgery and what your options are. My thoughts were that my surgeon was going to rid my breasts of cancer, and since there is only the slightest bit of breast tissue left, the chances of getting cancer again there is very small. Take a deep breath! Many of us have been exactly where you are. Looking down was hard the first few weeks after the procedure. Now it is not. I’m sure you will feel the same. I wish you the best through this journey.

member4039 (Survivor (5 - 10 years)) - 06 / 13 / 2012

I'll go with the practical advice since Nancy beautifully captured all of the emotional side....

First, I got unscented baby wipes. I didn't know when I would be able to shower my upper body. If you have a hand shower, even taking a "half shower" felt great. The baby wipes definitely did the job until I was able to take a real shower.

I also bought an electric razor. I knew I would not be able to shave under my arms with a regular razor.

"PINK POCKETS" for the drains you will likely come home with.... keeping the weight off the drains is a big deal and they are an ingenious way to keep the drains from pulling. (That was more "painful" than the incision sites)

A recliner for sleeping is great but if you don't have one (I actually borrowed my friend's chair) made a cocoon in your bed with pillows so you can sleep without waking yourself up because you inadvertently turned.

LOTS of zip up or button down tops. It will be a while before you can comfortably lift things over your head. LOOSE tops, too.

Those are some of the things I found most helpful. If I think of others, I will add to the list....

Now for the personal.... I wish you all the best. This is a scary and emotional time. Take comfort in this community and know you are not alone. You've reached out for information here and that's so important. Don't isolate. We all "get it" and we are all ready and willing to help keep you standing!

Hugs..

AnneMarie

member9403 (Survivor (1 year)) - 06 / 14 / 2012

Great answers.

In addition to wipes, get some dry shampoo for your hair. Trust me on this.
Also, get some great movies to watch (or add stuff to your netflix queue ... I recommend light-hearted, funny, cute things. I watched Almost the entire Gilmore Girls during my recovery.

Definitely get the Pink Pockets! So nice. I loved those.

And as AnneMarie said don't isolate. It's easy to withdraw at a time like this. Sure, you may not feel very social, but even just have a friend come over and watch a favorite tv show, so you don't feel alone.

(((hugs))) Will be thinking of you and I hope your surgery goes smoothly and recovery is swift!
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