Lynch Syndrome - am I selfish?

Hi ,

Really sad to read your post as it’s a heavy burden for you . Firstly you are not selfish,  I would reframe that as deeply concern from a reasonable point of view .

I think the genetic side is always a concern but I sincerely hoping that in twenty years time there will be major changes in the treatment of cancer for the sake of my own children . Who will then be in their 40s .

My own mum is a stage 4 bowel cancer patient and been at it for 11 years . I think we all wish we could remove painful experiences from the people we love . However we have had some of the best times as a family since her diagnosis. Life is good . She does and always will have hospital appointments and scans . She has had to have complicated operations etc with unknown outcomes but she has also done a serious amount of living . 

There is no known genetic link  for my mum so I have never had to knowingly think about that side . It’s a big issue and if your anxiety is crushing it might be an idea to chat that side through with your GP so when you do make a decision it’s not clouding you’re judgement and I say that from someone who totally understands how debilitating anxiety can be .

So absolutely no judgement here . Life throws up  a up complex issues and only you can make this decision as you have to be able to live with it . But you have at least a safe place here to chat this through . 

Thinking of you and sending lots of love ,

Court 

Hi Lily,

Sorry to hear about your partners father :(

Ofcourse not! I'm sure your head has been a scramble and I think it's natural for your mind to go round and round with the dreaded scenario game! I think it's normal to consider how to protect yourself and future family. 

I'll try and offer some insight ( this is just my experience so do take or leave any of it) :) 

I'm kinda in a similar situation! I'm 26 and my partner is 35. We've have been together for 8 years. Two years ago he was diagnosed with bowel cancer. We also wanted to start a family soon.

He has a load of cancer in his family history however they didn't do any tests for Lynch syndrome. He had symptoms for months and was constantly going to the GP and being sent away every time with 'it's probably IBS' it took until his tumor completely blocked his colon that A&E picked it up - not ideal! 

Will your partner be screened every so often with testing kits or colonoscopy's? If so that's great! (You mite already know this but) bowel cancer usually starts off with polyps in the rectal/colon area. They start as a polyp and then they sometimes become cancerous. 

Although you can never know; If my partner was seen earlier he may not have needed so many surgeries , cancer may not have spread, he may not have needed chemo and it may have already been over a long time ago - who knows! 

I'm sure you know from seeing your partners father go through it how horrible it can be! We've had a really bad time of it too! The first emergency op they literally cut him all the way down the middle, put his bowels on the bench, cut out the bad bits and then sewed him back up. 2nd surgery (this is very unlikely to happen btw) he had an anastemic leak, went straight back into surgery, came out in the ICU with a stoma and then went on to have a whole pint of sepsis in his spleen. It's sooo brutal!! He also had a liver resection. Surgeries can really affect the abdominal muscles when they keep getting cut through, scar tissue can pull when you move and also hernias are more likely which has left my partner not able to do a whole lot.

Although, if they find out about it early and it's not an emergency, they're more likely to do key hole surgery. Key hole is sooooo much better to recover from

Also, how has your partners father reacted to chemotherapy if he's had it? For bowel cancer you usually have a similar cocktail of drugs. 

So 50% chance that Lynch syndrome could get passed down to children? It's so tricky isn't it! By the time your children are 30 years old surely they would have made advancements... hopefully really good ones! Maybe think about a sperm donor?

Private health insurance is a great idea! Private treatment would make a big difference! 

We've been each others rocks and have a great relationship. I think it's been a great help for him having me by his side through everything. He thinks I've (kinda) saved his life by helping him in emergencies, keeping him motivated to stay alive haha! And even one night at hospital when he was so so ill and he was being overlooked. I stayed awake and watched his vitals all night and chased around doctors and nurses.

I found it helpful to try and do what i can with things i can control and try and clear my mind of things I cant.. although i do still struggle with this sometimes! 

Also try and have all the fun you can! 

Jeez that was long! 

All the best :) 

Georgie x

HI Lilly04

First of all I’d like to say “hello” and welcome to the Forum.  

I have read your post and Court’s reply.  I was diagnosed with bowel cancer in 2011 and at that time I had no idea about bowel cancer being hereditary.  After I’d had surgery and was going through chemo I went to a CRUK meeting in Birmingham where there was a discussion about Lynch Syndrome and a group of people who had incidents of bowel cancer in their families were just setting up the Lynch Syndrome Charity.

I have two daughters and two granddaughters and I do worry about the possibility that any one of them having bowel cancer.  My one daughter has had problems and had a polyp removed about three years ago, and a couple if years ago I found out that we do have a history of bowel cancer in our family.  It’s not so long ago that cancer was never talked about within families and many of us are unaware that there is genetic link to bowel or another cancer within the family.  

I can empathise with you and your concerns, and you are not being selfish to air them, but as Court says cancer research is making great strides at the moment and new treatments are becoming available all the time and with all the genetic research that’s going on at the moment hopefully things will be so different in twenty years time.

The statistics at the moment are that one in two of us is likely to be diagnosed with some form of cancer.  Both my husband and I were diagnosed within two years of each other, I had bowel he had lung, we were unlucky, but we are not alone many as families are facing similar situations.  None of us know what the future holds, but you have to thinks things through and make the decision that is right for you.  

Macmillan have a help and advice line, The number is 0808 808 00 00 It is available seven days a week from 8 am to 8 pm and they will be able to offer you emotional support if you feel that you need to speak to someone.

Do take care, 

VickiLynne

Re reading my message... I really hope I haven't freaked you out! It can be really hard but it's also amazing and surprising how resilient people can be too x 

Hi Georgie44

Everyone’s experience of cancer is different, some cope well others have a hard time.  Bowel cancer was, and still is by some GP’s, thought of as an older person’s cancer, and often younger people present at a later stage - like your partner through A&E. Although I was just over 60 my GP thought I was too young for bowel cancer as I was very healthy in other ways and it was almost a year of persistent visits and being send for this test and that before I was eventually sent for a colonoscopy and cancer was found in my colon.  I, like many of us on here, have been trying to raise awareness to the fact that more and more young people are being diagnosed with bowel cancer.

The positive is that bowel cancer is one of the easiest cancers to treat.  Cancer in the colon can be very slow growing and is often hard to find but hopefully the new “poo” test kits will be more able to pick up colon cancer - as often there is no evidence of blood in poo with colon cancer.

Key hole surgery can be a preferred option for colon cancer, but not all surgeons carry out key hole surgery.  My surgeon told me that I was to have key hole surgery but if she found that there was a problem then she would have to go straight to normal surgery and I would have a bigger scar. And possibly a stoma.   I was lucky, I had key hole surgery but I did need follow up chemo.

Key hole surgery isn’t always offered if a cancer is found early - to can depend upon where the tumour is located.as to what type of surgery is offered.  

You also mention private health insurance.  It is not everyone who has a job that offers private health insurance or can afford the premiums.  Quite often with private health cover you may  see a specialist more quickly  (unless, that it, your GP has put you are on the cancer fast tack pathway when you will be seen very quickly on the NHS) but majority of cancer surgeries are undertaken in NHS hospitals although as a private patient  you may get a private room.  Many of our NHS hospitals have  Centres of Excellence for Cancer Services. 

It seems that your partner had a fought ride and I really hope he is now well on the way to recovery.  

It is also very hard to watch someone you love going through cancer treatment, especially the side affects from chemo or radiotherapy.  Macmillan offer support to family members of cancer patients as well as the patient and should you or your partner need to talk to someone, the number is 0808 808 00 00 and t is available seven days a week from 8:00am to 8:00pm.

Take care

VickiLynne