Thursday, May 31, 2012
Just Diagnosed with Cancer? Chat with Experts

My Story: Bi-Lateral Mastectomy and Expanders

By Elli Tuesday, January 25, 2011

Hi everyone and God bless you all for going through this and sharing your story.
My story goes like this:  Today is Jan 21,2011
In Oct 1999 I was diagnosed with Carcinoid Cancer.  I have undergone many surgeries since (nearly yearly and always at Christmas)  I have a 10 year old that who has to deal with a "sick" mom every Christmas, which tears my heart out.   I have had 9 surgeries since 1999.  Last year I was surgery free!  We were so happy and though it was my turning point.   As of October 2010 I had (in this order) 6 ft of my sm bowel, 1/3 of my lg intestine, my terminal ilium, my appendix, my gall bladder, 2 more feet of my sm bowel, 3 tumers from my arm and again my sm bowel.  Last year I was great.  No surgery!   Come May 2010 I was diagnosed with Lyme Disease!  Boy is that painful in the morning, but works through throughout the day.  No fun but not surgery.  I went through many treatments for it and it seems that I have chronic lyme which will prob never go away.  In the meantime I still have my carcinoid cancer and its symptoms and have to take 4 shots a day in my tummy to treat that.   So I went for my usual mammogram in Oct 2010 and was told that the tech wanted to talk to me before I left.  "we see a few areas of calcification, nothing to worry about but we do biopsy it.  So ok, did a biopsy.  Oh!  Its ductile carcinoma, "no big deal, caught it early, lets do a lumpectomy to take it out".  So ok did the lumpectomy.  Oh!  There is cells in the margins.  "no big deal lets to another lumpectomy"  OH NO!  I went for a second opinion.  I went to the cancer center at Baystate in Springfield MA.  WONDERFUL PLACE.  My surgeon said, "well yes, I would do another lumpectomy usually, but in your case I feel it smarter to do a bi-lateral mastectomy."  My heart stopped!!!  I freaked!  She explained.  I had ovarian cancer  in 1983, carcinoid since 1999.  My mom had, at age 75 a bi-lateral mastectomy for ductile carcinoma, chose bi-lat to save herself from any possible re-occurrence in the future.  So ok I did agree and on 12/30 I had a bi-lateral mastectomy with reconstruction from my tummy.  12 hour surgery that I was insanely afraid of.  Turned out to be 4 surgeries (32 hours total) within 48 hours.  My poor surgeon!  My poor family!  Because of my carcinoid cancer I had to have special meds drip during all surgeries as the cancer releases serotonin and adrenalin during stresses, so they also had to go very slow.  The mastectomy itself longer than usual.  Then the flap surgery was next, which took again, longer bringing my surgery up to 17.5 hours.  As soon as I got back to my room, my lungs collapsed and back in I went for a couple hours.  Again they had to use the special drip for my carcinoid and as they were working on my lungs they saw that the transplant (flap) was turning black.  They brought me back to my room and explained everything to me.  The carcinoid was giving symptoms so they increased my dose.  The left "breast" was getting worse, blacker and blacker.  He had to take me back in and remove the dead tissue and the transplant.  He was able to save the right even though there was some dead tissue but it wasnt progressing.   But within hours of me back in my room, the tissue was dying again.  He was going to remove only the dead tissue and try to save the transplant but I asked him to remove it as I knew that it might not work.  He did.  Turned out that when he cut the vessel the flow was wonderful, yet when he attached it tot he transplant it slowed.  In the end we realized that the special med for my carcinoid was restricting blood flow, which was not allowing enough flow to keep the tissue alive.  BUT I need the meds.  I take it 4 times daily at home, and with the stress of what I went through the dose had to be increased to stop carcinoid crises (which could stop my heart).  Ok so I had the bi-lat mastectomy, then again for the transplant then of course what ented up as a tummy tuck and a new belly button.  So, not bad, I got a flat tummy and pretty little belly button (my old one was awful because of all the past surgeries in my gut) and of course a flat chest!.  I do have the tissue expanders.  I do have uncomfortable-ness.  Tightness in my chest (feels like a thick piece of leather under my skin) and pain and swelling under my arms because of the node removals.  So no, not fun.  I am tired, dont sleep through the night.  I am getting around but its hard to do things without arms (cant raise them up or lift anything heavy)  I use ibuprofen 600  every 4 hours which takes the edge off.  For the arms and arm pit area, I found ice really helps.  I do feel a lot better after a walk.  Seems the body doesnt like sitting or laying all day and night!   I do little things like folding laundry (cant take it out of the dryer or carry the basket), cooking (as long as someone gets all the pots, pans and ingredients for me), empty top shelf of dishwasher(someone has to put the things away if they are higher than the bottom shelf of my cabinets).  I shower, dress by myself, do bills and such.  I am going back to work as a kindergarten teacher 8-12 for now and hope to increase that within the month.  I thank God that the breast cancer is gone (btw, the right breast was the one they caught on mammogram, but the left breast they said was infiltrated throughout....interesting! So the surgeon said its a good thing we went for the bi-lat mastectomy!....makes the discomfort all the more tolerable!)  

2/13/11 2:11am

You have been through so much. I am so happy you are better, moving forward, and feel blessed despite the obstacles you have faced.

 

Best Wishes to a great and full recovery, and feeling better every day!

 

Thanks for sharing,

 

Peglove

2/14/11 9:20pm

Thank you so much!   I am very positive and look forward to the day that i am back to "more normal".  I appreciate my life and the gift of getting to live still.  Thank you for your kind words

Ellen

Ask a Question

Get answers from our experts and community members.

Btn_ask_question_med
View all questions (6580) >
By Elli— Last Modified: 02/14/11, First Published: 01/25/11