Lynch syndrome ovarian cancer

Hi everyone, I had an open abdominal hysterectomy 4 years ago. I had strange abdominal pain and, looking back, my stomach had increased in size/I was feeling full quicker and then had episodes of extreme fatigue and flu like symptoms. They found a large cyst through scans on my right ovary which they warned me might be malignant. I was sent home so they could plan my operation. It was so scary, I was 48 and had only ever been in hospital to have my 3 children. I knew my brother had had bowel cancer at 31 - he recovered, my dad died at 47 of bowel cancer and thought my gran died of ovarian cancer. I later found out my gran also died of bowel cancer aged 53, it had spread to her womb, which is not ovarian cancer. My brother tested negative for Lynch syndrome so they didn't test me, I wasn't even given the option. They just told me to go for bowel screening every two years - no mention of risk of any other cancer, ovarian included, was made. I had it in my mind my gran died of ovarian cancer so I demanded CA125 testing a few years before and then when I was unwell. My CA125 was 540 and I had to admit myself to hospital to be scanned. 9 days after my hysterectomy I was telephoned to say they removed an 18cm cyst as well which was cancerous. It was endometriod adenocarcinoma grade 1, stage 1-2c only because the tumour burst during surgery. There was no cancer on the surface of the ovary, it had not spread and the abdominal washings and 2 lymph nodes the took out were also clear. The also removed my appendix and half my omentum. The appendix had been bashed about by the tumour and the tumour had attached itself to the omentum - the omentum did its job. If the tumour hadn't burst I would have been given the all clear, but instead I was to have 6 rounds of preventative (adjuvant) chemo, Carboplatin. For 3 weeks until my first appt with the professor (at the wonderful Beatson, Glasgow) I thought I would lose my hair but was then told as I was only getting one chemo I would not go bald. I did 3 rounds of the chemo. The first two were bearable but when I had a terrible reaction to the third, I was advised I could stop it at three, that I was borderline for chemo in the first place. I eventually agreed and stopped. 4 years on from my operation I am not signed off from oncology just yet though I am now down to yearly appt and going to the general hospital instead. I am halfway through the year and it's scary- I feel like asking for my CA125 to be checked now. It was at my first appointment they first mentioned Lynch syndrome (formerly HNPCC) and tested me for it. They had an idea I had it as the type of ovarian cancer I had was synonymous with women who have Lynch. It says on Lynch websites that women with Lynch should get a hysterectomy at 40 to prevent them getting ovarian cancer. Genetics still insist they were correct not to do a simple blood test on me when my brother tested negative for Lynch, as well as that they would not have offered me a hysterectomy if I had tested positive. This is an awful, wrong decision - I could have died, this has shortened my life expectancy. I will not take any legal action as not only do I work for NHS, I am just grateful that they saved my life (so far, so good). The op did leave me with a massive hernia which I then had to undergo more open surgery. I have to keep going for bowel checks as Lynch is primarily risk of bowel cancer. I need an endoscopy every 5 years now I'm over 50 and that found a "thing" in my bowel. But thankfully one year on, this week, they are satisfied its harmless. Recently two if my favourite TV programmes have characters who have ovarian cancer and one is terminal. It is terrifying and very upsetting to watch but I am GLAD ovarian cancer is finally being put out there. I had mine for 6 months and did not know - it truly can be a silent killer. My thoughts go out to all fellow cancer sufferers and so far survivors. God bless you all

[Lindaura]

Thank you for this story of your ordeal.

I am so glad to hear you are free if Cancer now and you have had the genetic test for Lynch Syndrome, which I had never heard of!

It definitely puts you at risk for many types of cancer and they are all awful!

Meanwhile, I am able to ask my GP for a CA-125 anytime I feel I need one. They know my history and are willing to help, so if you feel shaky about anything, go ahead and have it checked.

Hope all is well,

Best wishes,

Laura

[Hidden in reply to Lindaura]

Thank you Lindaura for your support and encouragement. I think I will just get the CA125 done. As you say, it probably wont be a problem as they usually are very understanding. This was my first ever post - it has taken me 4 years to be able to breathe again and talk about mine online. I feel such a coward considering what a lot of the ladies on here have been through and their higher stage diagnoses.

I do wish to raise the issue of Lynch syndrome here as it affects women who wont know they could have it and can get ovarian cancer. If any ladies out there have a family history of bowel cancer from 2 or more family close members, please look into it. No-one would make the connection. I had never heard of Lynch (HNPCC - Hereditary Non-Polyposis Colorectal Cancer - its a faulty mis-match DNA repair gene) either and my brother was 31 when he got bowel cancer and I knew my dad had died of it at 47. The highest chance of getting bowel cancer is 80% but the ovarian cancer was only 11%, and that's what I got. I wish I had known this existed and I would have insisted on the test, no matter what they said.

Good luck to you too, I hope you are also doing well.

AMK2