Double mastectomy and staying on plan

Praying for you.  Praying for peace, a problem-free procedure, a positive outcome and recovery!!!

Please check in and let us know how you are.

 

 

 

 

 

 

 

 

 

Sending healing thoughts your way.  I had a prophylactic bilateral mastectomy 2 and a half years ago.  What kind of reconstruction are you having?  I had reconstruction from my own abdominal tissues.  That allowed me to get most of a tummy tuck that was covered by my insurance.  I had some extra skin but not as bad as some I have seen.  But in addition to knowing that I had reduced my risk of breast cancer to about as low as I could get it - I also had my panni removed.  The sense of relief that I had the day after the surgery was a big surprise to me, as I had not realized how this possibility preyed on my mind - I am brca1.  It is a rough surgery to go through but you should bounce back fairly quickly - just a few days of feeling slapped down.  I would much rather be alive wearing my abdomen on my chest than the alternative.  Finding out that I was brca1 is what sent me on my weight loss journey.  I am actually an rny patient - came over here looking for another post.  Good luck in your journey.

JoAnn

Cancer is also what kick-started my weight loss journey.  I was diagnoased with skin cancer, and very narrowly missed it causing it blind me or even worse get in the eye socket (99% terminal if that occurs).  

I have to be honest- I am ADHD and kind of mucked up this process.  I was approved last June for the insurance to remove the pannis, but my health insurance was changing as of January 1st.  I scheduled the tummy tuck, and that PS warned me vehemently that I should do the TT after.  So I cancelled.  Schedule the PBMX for December, and was pissed when the breast doctor's office didn't follow through with the paperwork and I found out in November that I lost my surgery date.  So I contacted my TT Plastic surgeon, and they happened to have a date in December.  He AGAIN recommended that I wait, but I had made up my mind.  He was encouraging me to wait so I could do a skin sparing option... but I had already decided to go with the most effective- simple mastectomy and to get rid of as much as I possibly could.  Now the surgeon doing the PBMX has to deal with the fact that I had the TT done.  I have NO extra skin at all from just below the cleavage area all the way down throgh the hips.  My TT guy had already told me that I did not have enough fat on me to use my own tissue, so that reconstruction option was ruled out anyway.

So, long story short... I am having tissue expanders put in and will complete the exchange with implants. I weathered the abdominoplasty pretty well, although it has been a sloooooow healing process.  Still not able to excersie other than I can now go for walks.  But I handle surgery well overall.  I know it will be tough, but I also know I will adjust to the disfigurement and will weather the pain part also.  

I agree about reducing the risk factor.  I am ALL about that.  I could care less what I look like as a result of this surgery- they are so not worth dying over.  I would not even bother with reconstruction if it were not for my husband. 

I found out I had brca1 back in 2006.  The thing that scared me was the increased risk of ovarian cancer along with the fact that my mother died as a result of breast and ovarian cancer.  My maternal grandmother had also died of breast cancer back in the 50s.  I had tried repeatedly to have children going through many rounds of ivf treatments.  So, in my mind, the ovaries and uterus did me no good.  So I immediately had them both removed.  Felt some sense of relief after that but did not take the next step yet.  Was trying to understand my situation.  I guess the next incentive was they wanted me to have a breast mri every year but I did not fit into the machine.  That was my wake up call to do something about the weight.  Once I had stabilized after the rny, I figured that I was in the best shape of my adult life to handle the mastectomy.  Like you, my breasts do not define me.  So I also had no emotional attachment to them.  At that point, they were evil to me.  Husband was super supportive in whatever decisions I had to make.  I had the surgery 2 and a half years ago and really have never looked back.  It was my first introduction to plastic surgery and is probably what spurred me on to fix other things that resulted from the massive weight loss.

As far as passing it down, my understanding is that it can skip a generation, but you might want to verify that.  I would hate for someone to not get tested thinking they are safe and they are not.  I believe that I actually got it from both sides of my family as there are several cousins on my fathers side of the family that have had ovarian cancer. 

Going with implants should make it easier in that you will only be having surgery in the breast area.  I had a long incision in my abdominal area at the same time along with 4 drains to deal with.  But this is all worth it to reduce your risk and worry about at least these diseases having an impact on your life.  I had my oopherectomy and hysterectomy done laporascopically - I felt like I could go back to work the next day.  That recovery was a piece of cake. 

I wish you well in dealing with this next big step.

JoAnn

Thank you for your reply- it means a lot to me.  I have a veritcal incision from a TT 4 months ago that is still in the healing process, so hopefully that will not interfere too much.  You had a whole lot of cutting done... brave soul!   Thank you for mentioning the oopherectomy and hysterectomy and the ease in recovery.  I have not checked into the recovery part yet, so it was great to read that it was relatively easy.  We do not have cases of ovarian cancer in my family history- but if you are a woman and share my genes you will get braast cancer at some point.  That sucks for my daughters, so I am really focused on educating them and modeling proactive behavior.   I can totally relate to you describing your breasts as evil- I tend to describe mine as future asassins.  But pretty much the same vibe.  

Wow! You have been through a lot recently. You are brave. You will be successful with all of your plans.

First of all I want to say I always enjoy reading  your posts for your common sense approach.

My younger and mother both had breast cancer, my sister was only 34 and is an 11 year survivor though she does have terrible lymphedema in her arm. My mom then developed uterine cancer which spread and caused her death.  Sister was positive for the BRCA gene.  I was terrified but I did go get the genetic testing done and was negative thank God. I convinced my GYN to do a hysterectomy and oophorectomy as grandmother also had uterine CA. I did have hypertrophy of my uterine lining which is a pre- pre- pre- cancerous thing. 

My sister who had cancer did have a prophyoactic hysterectomy also and has debated having the prophylactic mastectomy (she had a lumpectomy originally).  My other sister has not had testing done.  My mom had quite a few sisters and several of them died from Breast Ca.  The geneticist determined that the gene probably was passed through my Maternal grandfather.  I have 3 daughters and from what I understand my negativity reflects on their risk.  Unless of course something was passed down through my husbands family (though breast cancer is not common in his family)

Had I been positive I am not completely sure what I would have done. I think I would have had the surgery, but until actually faced with the decision, I am not sure.  Of course as droopy as they are now, no great loss.

God bless you, here's hoping everything goes well. 

Anne

 

I love that you were proactive.  It is so easy as women to be aware of the family history and rationalize putting off seeking genetic counseling or screens.  I have a hysterectomy and removal of ovaries in my future as well.  Not sure if they will consider going that over the summer, but as soon as I can I will proceed with that.  It will be very good to have the last surgery done and knowing I have done everything possible at this point to reduce my risk.  From then on, continue to manage my weight and nutrition and get my screenings done on time.  I can do that! 

HT, I don't know if you realize this or not, but some people who are BRCA positive also have an increased chance of melanoma. Both run in my family. So it is a good thing that you are proactive about everything!! Best of luck to you. You will do well, I'm sure. (((HUGS)))

Ann

Unfortunately, I know far more about that then I would care too.  I have been going in circles with skin cancer for 3 years, both squamos and melanoma.  I am pretty much the poster child for "Go get your skin checked, wear your sun screen, and avoid the sun!"