Editors note: This is the story of "MummyMad" - the fourth in a series that I have called "Cancer - Your Story". If you are interested in sharing your story please click on the link and contact me.
The Mad House (Blog)
All "Cancer - Your Story" posts
Cancer Research - http://www.cancerresearchuk.org/
Photo credit: D Sharon Pruitt - Pink Sherbert Photography
* * *
I thought I would tell you my story, which is a story of how cancer touched my life and the choices I made.
Firstly the basics, I am a 36 year old stay at home mum to two very energetic and exuberant little boys aged nearly 4 (MiniMad) and 5 (MaxiMad) and wife of 15 years to MadDad. We used to live in Berkshire, but moved back to the northeast when I was pregnant with MiniMad.
Due to a family history of cancer and my Mum’s younger sister getting a pretty rare and unusual cancer (primary Peritoneal Cancer), she was tested for a number of genetic markers, or spelling mistakes in her genes. She had these tests when first diagnosed with cancer and we all thought nothing of it and tried to support her as best as we all could through her treatment and recovery. About 11 months after her initial diagnosis she was informed that she carried the BRACA1 gene and was the testing was opened up to her siblings and her daughters. My Mum was then tested and found to also be positive for the spelling mistake and so I too was offered counselling and a test.
After the counselling and many late night discussions with MadDad, we decided I would have the test. I was very large breasted and also under 40 (so my breast tissue was denser) and mammograms were very hard to interpret. I was offered annual mammograms and even MRI’s, but felt that I would like to know if I did carry the spelling mistake, so that I could take positive action. Anyway, to cut a long story short, I was tested and found to be positive.
What did that mean for me? Well in very basic terms it meant that my risk of ovarian cancer was approx 60% lifetime risk and my chance of breast cancer were 85% lifetime risk. MadDad and I were floored, although we knew there was a 50% risk of being found positive, but it was such a massive blow.
Again we had counselling and lots of discussions with cancer specialists, people who had been though similar, a gynaecologist and a plastic surgeon. The first decision we made was to have my ovaries and fallopian tubes removed. There were studies that showed that having this operation before you turned 35 reduced your risk of breast cancer and also ovarian cancer is a difficult cancer to detect, lots of the symptoms are ones that woman just put down to the time of the month. Also I have two wonderful children and we decided to concentrate on me being able to watch them grow up rather than taking the chance of extending our family and something happening. This was such a hard decision for us, as our children were very hard come by and we would have loved a large family. Anyway decision made, I had my operation July 2008.
Next we made the decision to have a double mastectomy and reconstruction, again to me this was a bit of a no brainer, Hobson’s choice if you like. Doing this would reduce my risk of breast cancer from 85% to 6%. I would not have to have annual mammograms and live year to year wondering when cancer would come knocking on my door. I felt that the treatment for cancer was worth avoiding. I had seen both my aunts suffer the indignities of cancer treatment and wanted to avoid at any costs my children going through the same.
So the hardest part of this decision was what type of reconstruction to go for, we had many meetings with my wonderful plastic surgeon and eventually decided on implants for a number of reasons, but mainly because recovery would be quicker and being well to enjoy my time with my children was my priority. Anyway a date for my operation was set 28 February 2009. I was going to have a profiatic bi-lateral mastectomy with a double reconstruction with implants (what a mouthful).
So I went into theatre that morning with my GG breasts and came out with what felt like none!!! A total of over 6.5 kg of breast tissue was removed and I was overjoyed. All went well. But it doesn’t end there unfortunately. I developed a very nasty infection and the implants had to be removed and then I developed sepsis, which was an horrendous experience not only for me, but for my wonderful family and friends. Needless to say it has been a very long road to recovery, but I am getting there.
I went back in to Hospital for some for some remedial work to enable me to wear my prosthetics at the beginning of November 2009 and I have not ruled out a reconstruction again at some point in the future.
But I am happy and I am looking forward to a long and healthy life with my family. Have I regretted my decision, would I have made a different choice? Well hindsight is a wonderful thing, but I made the right choice at that time for me and my family and that is what matters. There is no point in having any regrets, that is the past and I cannot change it. I have hopefully managed to change my future to a future without breast or ovarian cancer, to a future where I can watch my children grow up and flourish. To a future with my family. I am not brave, just realistic. I was given a choice, a chance that so many people are not given. Fortunately or unfortunately approximately only 5% of cancers are genetic, so I was so lucky to find out about my spelling mistake or faulty gene and I am hoping that when the time comes for the boys to be tested (if they wish to), not only will doctors be able to detect the fault, but rectify it too.
If in addition to the hope that my children haven’t inherited this from me, my only other wish would be to remain cancer free for as long as I can. I try hard not to worry about the “other genetic” cancers that might come knocking.
Every now and again it all really gets to me, when I hear of another wonderful member of my family succumbing to this dreaded disease a little bit of my confidence is wiped away and I start to feel uncertain at my ability to beat it to, but I would do anything to remain with my family, with the ones that I love and love me. So what would you have done in my shoes?
* * *