bilateral mastectomies with hysterectomy

ndroby

I have been diagnosed with Cowden's Syndrome which places me at high risk for breast, thyroid, and endometrial cancer. I had bilateral breast biopsies showing ADH and ALH. April 10th is my surgery date for bilateral mastectomies with SNL biopsies and TEs. I have been told that I need a hysterectomy because of my high risk for uterine cancer. Has anyone ever heard of doing BOTH of these procedures in the same surgery?

Miller1353

Yes, some surgical oncologists will do both procedures. I asked my surgical onco to do this, and she strongly encouraged me to have two separate procedures. I was eight weeks out of chemo, and she thought that I should not try both. I'm glad that she advised that because I had a nasty post-surgery infection from the mastectomy. My situation is very different from yours. Best wishes on your decision.

cinnamonsmiles

My breast surgeon has been practicing for years years with lots of experience and understanding the patient. My onocologist said oh yes, do it all at once. My breast surgeon adviced me not to and boy am I glad.

I have had bilateral mastecomy with snb (no reconstruction) and a total hysterectomy with ovaries and tubes out at a later time.

The pain after a hysterectomy is incredible. It is hard to move around for the first few weeks, well, two anyway. 

I usually never give advice like this, but I would say NO, do not get them done at the same time. 

You will need healing after the bmx with snb. And you never know what pain complications you could have from that. It is very easy to knick the nerves with the snb, and you could have some nerve damage. Your tissue will but cut into with the bmx. You need time to heal. And you will need your belly muscles as your chest heals. If you get the hyst. at the same time, you wont be able to use your bellymuscles.

These are two MAJOR surgeries. I, personally , think that is way too much for the body to go through. Your BMX with snb and TEs could take up to 6-8 hours to complete. That is a long surgery! I don't think it's a good idea to add in the hyst after that.

There is a website called hystersisters.com. Check them out. They do a good job of describing what you will go through with the hyst. and have a free brochure they can mail to you.They do have discussion boards like here.

I seriously hope you don't do both at the same time. Like I said, I have had both, and would never ever, ever recommend doing both surgeries at the same time. Throw in reconstruction and you have more done to you.

Good luck with your surgeries. Keep us informed of how you are doing.

ndroby

Thank you both for your input. The more I read on this Web site, the more frightened I become of doing any surgery or any kind of treatment. I am supposed to have implants, but now that I have read the thread about problems with tissue expanders, it sounds like I will end up with an infection.If I have natural tissue surgery, then I will have flap failure. Does anyone have a good experience? If so, where can I hear about these good experiences?

gale1525

I have had a bilateral mastectomy with snb with tissue expander's ( the radiated side failed I now have a DIEP on that side) and a laparaoscopic hysterectomy. They were done a separate times. With the mastectomy you are going  to go through a emotional time just from that. Then with the hysterectomy you are going to be put in instant menopause, along with the emotions from that so you might want to do them separate. I had my hysterectomy six months ago and I was up and about the next day and off pain meds the day after that.

Miller1353

I had a terrible time with tissue expanders. My plastic surgeon said that there was less than a 2% of infection. My oncologists say the reality is up to 50% of them fail. I spent 15, yes 15, nights in the hospital after losing the expanders. I honestly did not know if I was going to live. I had renal failure, blood transfusions, you name it, I went through it. My cousin had TEs and did well, but I can tell you that if something goes wrong, it is a big deal.

After that fiasco, I waited a year then tried DIEP reconstruction. Excellent surgical result, but the surgeries, especially stage 1, was grueling. No flap failure, just 8-12 weeks of recovery. I have had three DIEP reconstructive surgeries and hope to finish this summer. 

If I had to choose between the two, it would be no contest. DIEP all the way...it's a lot of time and money, but I have a great surgical outcome along with a flat stomach.

ndroby

Thank you for your response. I am someone who MUST work for a living to keep my insurance and have an income. Were you able to work during this time? Maybe I should take my chances and just have 3 lumpectomies? There is nothing good said about implants that I have read, and I cannot afford the time off for DIEP.

gale1525

I was really worried to about having to take time off because I am the bread winner and I don't get disability. But my DIEP went very smoothly so good in fact that I went back to work 11 days (full time) post-op  minus any lifting. I really prepared for the surgery with exercise and alot of extra protein. So it can be done.

SelenaWolf

Sometimes too much information - especially when it's conflicting - can be paralysing.  After all is said and done, you must do what feels right for YOU.

ndroby

Hi All,

I decided to separate the  surgeries. The BS said they do these 2 surgeries together a lot, but when I asked them to find me a former patient who has done both together, they could not come up with a name. That changed my mind immediately. SelenaWolf, I agree that doing what feels right for YOU is primo! I followed your advice and feel empowered. Thank you!

Nancy

lbrewer

I had my hysterectomy/oop at the time of the lift on my other breast.  I had a robotic.  I never had any pain or even konw anything was done except for 2 scars that look like bug bites.  There;s a thrid but its inside my belly button.  If I had not known about it, I never would have known they had done it.

I highly reccomend finding a qualified robotic surgeon.