I’m a 67yr old former nurse living on a farm in rural Herefordshire. We have four children and three and a bump grandchildren.
Up until the Summer of 2017 when I was 63 my health had not been unusual. Migraines in my 30/40s and early 50s but nothing else to note.
I was busy product managing building a new build house plus enjoying looking after grandchildren and hill walking with friends.
Earlier in 2017 I had completed a challenging three peaks walk in Wales, then suddenly later in the Summer I found I could no longer walk up the hills without having to stop and lay down to recover. I knew something was wrong so I visited my GP.
At my appointment bloods were not taken at first but a chest X-ray ordered which all took time and it was not until a few months later I was found to be very anaemic and colon cancer was diagnosed in Nov/Dec in my local hospital, scans were then taken to check for spread and I had an extended hemicolectomy in December with chemotherapy beginning in January 2018.
At the time of the operation it was not thought there was any spread to the liver or lungs but after a repeat scan in March to check on lung nodules I was found to have a metastatic growth on my liver but lungs were clear.
During my course of 12 chemotherapy treatments I returned to my GP over continued vaginal spotting that I had been having for 12 months prior to my diagnosis of colon cancer but having already attended woman's health once and had been reassured by gynaecologists that it was age related and of no concern.
He then promptly sent me back to gynaecology and unfortunately another primary cancer was found in my uterus also
My chemotherapy was cut from 12 sessions to 8 sessions so I could have a total hysterectomy in June 2018 and then liver surgery in August 2018 followed by 5 weeks of radiotherapy to pelvic nodes in the Autumn of 2018 as it was found to be a grade three tumour in my uterus.
2019 was only to bring with it the detection of a second metastatic tumour on my liver only 6 months after the first, so again back to the operating table when a good spring clean was done and at the time of writing this I have had no more mets on my liver. Next surveillance scan in 6 months!
I should point out that during the course of all this surgery and treatments I had frequently asked about genetic testing as my elder Sister had right sided colon cancer just a few years before me
But I was told that the hospital did not send the tumour away anymore for testing, it had dropped the year before. ( I think and hope that this is no longer the case )
It was very fortunate for me that prior to my first liver operation at the QE when I went up pre surgery I was asked if I would like to join the 100,000 genome project. They just happened to be asking people at the time of my visit. So a blood test was taken there and then and they said they would test the metastasis removed from my liver
I was thrilled and jumped at the opportunity as this was what I had been requesting all along with my elder sister having had colon cancer a few years before me.
My priority was thinking of my four children then in their 30s/40s and their future health and catching any cancers before they had spread like mine had.
So my journey with genetics started right from my visit to the QE and I’m so pleased it did. After surgery in August 2018 my first liver met was sent off and yes I was found to have the gene MSH6 which particularly likes the right side of the colon and also the uterus!
Having been told in 2017 by one of the medical team that 2 primary cancers were very unusual, but not so when you have inherited the Lynch miss match repair gene!
So carrying on now into 2019 after my second liver operation I recovered well returning to pilates and walking but not three peaks in a day anymore!
Of course I had the concern that my colon cancer had spread to the liver and also that my uterine cancer may spread also but with regular surveillance, scans and appointments I was enjoying getting back to normal.
The great thing about knowing I carried the MSH6 gene was for my children to have the opportunity of being tested and this was done on three of them.
As a family we discussed genetics and both my daughters said if they were found to have inherited the Lynch gene from me they would have hysterectomies as soon as they had finished having their children, however they did not have it.
But my 39 year old son does have the Lynch gene so he now has regular surveillance colonoscopies. He has recently had a colonoscopy which was normal and will continue with them every 18 to 24 months.
Obviously he was disappointed to have the gene but at the same time he was very grateful to know as he will now be regularly screened for colon cancer and any polyps will be removed promptly and he is now unlikely to have any metastatic tumours on his liver like me because of this regular surveillance. He also does not find the surveillance a problem at all.
He has recently returned to this country from abroad where he’s living for the time being for more genetic testing in Birmingham for the Robertsonian Balanced Translocation RBT and if he is found to have this gene again inherited from me he and his partner will be pre informed that they could have some problems when they decide to start a family. It may be that knowing he has this translocation if he has? For example they may decide not to wait too long before they start a family as there ‘could’ not necessarily be complications?
The unusual thing is although I passed the Robersonian Balanced Translocation to my son I had no problem with early miscarriages. I can only put this down to the fact that I started having a family in my twenties rather than my thirties? So if couples know they have this particular translocation they may also decide to start earlier rather than later when the total female eggs are less.
As you will see from above I not only have the Lynch gene but this RBT S well. My journey with genetics has continued on…
Finding this out came about in 2020 as my one daughter had been having problems with recurrent miscarriages, 6 in a row. She decided after research into why to get genetically
tested and was found to have the Robersonian Translocation gene and although she hadn’t got my Lynch gene she had RT from me!
The good news is that now after IVF she has a second baby son born a few months ago.
Coming on to 2021 I was called up for a mammogram which I duly attended, not really having any fear that I would have a tumour. I think I had ways felt reassured that it would not happen to me. I had an aunt who had breast cancer at an early age but no other lose relatives and I also felt that having breast fed four children that may also lessen the risks?
Also surely ?. it can’t be possible to have not two but three primary cancers? Surely not!
A couple of weeks later a letter came through for further tests and yes I had a very small tumour in my left breast. Thank goodness for mammograms was all I could think. To me this was not concerning but a relief that it had been detected early and hopefully I wouldn’t need chemotherapy a second time. Well done surveillance!
I attended our local small hospital and knew before I went in exactly what I would say. I would tell my history of the two other cancers and the ongoing fear I had suffered over the previous 3 years and ask for a total mastectomy, not one but both to be removed so I could relax and enjoy the rest of my life with my grandchildren
Unfortunately only a lumpectomy had been decided before my appointment by MDT and perhaps if pushed a single mastectomy at the most. I went home disappointed as I knew with my catastrophic thinking I would be forever concerned that the cancer may reoccur in my remaining breast and I just wanted to be done with cancer!
So I set about ‘googling’ to try and find where I could get a double mastectomy and was looking for a surgeon who had knowledge of and was keen on genetics and research.
I found Mr Basu and I never looked back from my first email to him and am so grateful for his care.
I was so pleased that after meeting and listening to me in detail he would consider removing both my breasts. He fully understood my fears and it wasn’t long after that I was free and I woke up in my hospital bed on a high so thankful my breasts had gone.
Recovery was immediate with very little pain medication needed post op.
I had been fully open with all my friends both male and female and had so much support before and after the operation and some jokes along the way.
I love being flat and still feel good about my body and the fact that it’s in the open and everyone knows my past experiences with cancer makes it easier and there is no awkwardness at all.
I also felt so relieved that at that time I decided to set up a ‘guess the weight’ to show my appreciation and also raise money for breast cancer research. So with pink hair and two melons I took a selfie and started a ‘ just giving page ‘ and also had an article published in the local newspaper to raise awareness.
I don't have a specific gene for breast cancer risk, this cancer was not linked to my MSH6 gene but my having had breast cancer means both my daughters can now have mammograms from age 40 instead of 50.
In the words of my five year old grandson (this was after he had told his friends and teacher at primary school that Granny A was having her ‘ boobies off’)
When I told him after the operation I was like him now as had no breasts anymore, he then looked down my jumper to see and said ‘But your still a lady granny’
I am so pleased to hear that a Family History clinic is to be set up in Birmingham to offer advice on risk assessment, genetic testing, risk reducing surgery and other risk reducing options. Also the fact that the clinic will have geneticists, a psychologist and genetic counsellors and will provide an end to end service with those concerned about or diagnosed with a genetic breast cancer.
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