NINE MONTHS POST BILATERAL MASTECTOMY AND THE NIGHTMARE STILL ISN'T OVER

It has been 9 months since I underwent a skin sparing bilateral mastectomy with "immediate reconstruction".

There was nothing "Immediate" about my reconstruction.  I hope other women are given realistic expectations and are not fooled by the term immediate reconstruction.

Nine months later, after 4 reconstructive surgeries, my breasts are in stage IV capsular contracture.  They are tight, round painful balls.  They have fallen completely out of the pocket and are sitting with a large 3 inch gap between them. 

My nipple reconstruction did not really take, they have flattened dramatically and a large portion of the skin graph was destroyed 2 weeks post op when the bandages were removed.

I have been doing countless hours of research online and have found a consistency.  It seems that many physicians are having great success with Alloderm or dermal matrix when used in breast reconstruction revision.

The trick is finding a surgeon in the GTA who is willing to try this technique on me.

OHIP is a wonderful thing, and I am not taking it for granted one bit. But only certain and limited procedures are available to Ontario Citizens.  There are many surgeons in the US who are having enormous success with breast reconstruction with Alloderm.  Only it comes at a high cost.

I find this very frustrating.  As a Canadian, if a medical procedure is recommended to me such as a prophylactic bilateral mastectomy, to reduce the risk of cancer (which clearly reduces future costs for our health care system), then why am I not entitled to the most recent up to date technologies and procedures for reconstruction.

It may not be that I am not entitled to these procedures, its just that I have to find all of the assistance and resources myself.  This should not be the patient's sole responsibility.

There is no help, there is no assistance, there is no support.  This is very frustrating.

I have another surgery tentatively scheduled for February, and another one schedule for June.

Thank fully I have managed to get an appointment with a surgeon for a second opinion prior to my February scheduled surgery.  I really need to hear from another expert that I am on the right track.  This was not the plan.  I never imagined that my process would take longer than 12 months. 

Everything sounded so positive in all of the consultations with all of the doctors and surgeons.  3 to 6 months maximum all said and done!

I am terrified to work out, terrified to use my arms, terrified to sleep with out a bra.  All of my research indicates that all of these things may have contributed to my severe capsular contracture.  I am so confused and there are so many conflicting instructions.

I don't 100% trust my own surgeon's advice at this point.  How could I, nothing has gone as planned.

Hopefully by the end of the month, I will have 2 more opinions that will help provide me with hope.

Again, I realize that all of this is still better than fighting cancer, and I am in no way trying to act as if my story is worse than someone who did not have this opportunity and is now fighting for their life.  I just wish I was given all the possibilities and was able to mentally prepare for the worse.

The psychological toll this has taken on my body, mind and soul is astounding to say the least. 

I have to re-convince myself daily that I made the right decision and that I will get through this.

9 MONTHS LATER, 4 SURGERIES LATER AND I HAVE STAGE IV CAPSULAR CONTRACTURE.  MY BREASTS ARE DEFORMED, HARD, PAINFUL AND DISFIGURED.