Colon cancer and Lynch syndrome

Hi Dawy and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I'm sorry to read that your husband has been diagnosed with bowel cancer and I know what a difficult time this will be for you both.

The Online community is divided up into different support groups so I'm going to recommend that you join and post in the bowel cancer group, which is a great place to ask questions and share experiences about treatment. I'm also going to suggest that you join the carers only group, which is safe and supportive place to discuss your worries and emotions and get support from others who have a loved one living with cancer.

To join just click on the links I've created and , once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

It would be great if you could pop something about about your husband's diagnosis and treatment so far into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

If you have any difficulty navigating the community just drop me a reply and I'll be pleased to help

x

Hello Dawy

My husband was diagnosed with Bowel cancer last October. His mother died from bowel cancer in her 30's his grandfather in his early 50's and his older brother had it and luckily had it removed in his 40's. They have told us it is Lynch syndrome. I have two children 22 and 19. As you probably know they both have a 50% chance of having Lynch syndrome too. 

My husband was T4 N2 M0 before surgery on 6th Jan. Then into chemotherapy Infusion and oral for 8 cycles. On cycle 6, what we thought was an incisional hernia turned out the cancer had grown back and into the stomach wall. I am totally stunned! Despite the treatment it still grew back. They changed his treatment to Immunotherapy but the cancer is too big to operate on. If it starts to shrink the surgeons may try to remove it. The Ellenor nurses have reached out to my husband to offer palliative pain management. 

I have also just cared for my wonderful father who had Mesothelioma. Unfortunately he lost his cancer battle last week. He was 83 and happy to the end. A true inspiration. 

Like you I am trying to keep some normality going even though nothing is normal. It sound cliché but taking every day at a time is so important. Planning small manageable goals is important. Maybe a small walk if he can manage it or this weekend my son it taking him out in a golf buggy to watch him and a friend play golf. He can advise from the comfort of the buggy and no doubt tell them what they are doing wrong. 

You have to stay strong and try to do things that make you happy. Do you have any clubs like keep fit or sports? Do you have a good friendship group, or do they just not understand. 

This is my first time on the Macmillan forum. 

Seal pup

Hello Seal Pup 

I’m so sorry to hear what you’re going through. I also lost my mum to a long battle last September to cancer so empathise how you’re feeling. Have your sons decided to be tested for Lynch syndrome? If you mind me asking how quickly were his reaccurance? I do have hobbies and do lots of yoga and run my own which is challenging feeling like you’re letting people down for appointments etc. we’ve being going out walking and have a dog that keeps us busy. Palliative care are amazing and can make him comfortable my mum had palliative for two year and she did very well. Sending love and hugs as thes times are hard for all the family 

Hello Dawy

It's lovely to hear from you. Yoga is amazing, I have been doing Iyenga yoga for about 10 years. I have found it so helpful in times of stress. I think its wonderful that you take classes and I'm sure your lovely students understand completely if you need to cancel a class now and then. Having dogs to take for walks and care for is lovely and a really good excuse to get out for a few minutes to clear your head. 

As there are three confirmed cases of Lynch syndrome over three generations the whole family are now in what we call the Amsterdam criteria. Guys Hospital genetics department are monitoring my husband and his brother and all the children ( there are 7 ranging from 4 years old to 25 years old) The older children which include my two will be offered a blood test to see if they carry the Lynch gene. They are hoping to offer this sometime next year. 

To answer your question about how quickly my husbands cancer came back, is tricky. The surgeon said he had taken the tumour away completely in January however as it was found in his lymph nodes he needed Chemotherapy. By July we discovered another large cancerous mass had grown back despite being on chemotherapy the whole time. It is unclear if the Chemo was actually slowing down the growth or simply not working at all. They have now changed his treatment over to immunotherapy. 

Are there any other cases of bowel cancer in your husbands family? Have they spoken to you about having your son tested when he is older? 

Sending you lots of love and strength

Seal pup

Hi Seal Pup 

well I’m so sorry that your all going through this. Yes yoga is amazing does seem to distract me from things a little and cope better. His Dad and sister have the gene and his Dad had bowel cancer and others. So my son can be tested but not until  he 18. 
These genetic  conditions are hard shame you aren’t tested you d so there aware of future things. 

Ammuniotherapy is supposed to game changing by what we’ve being told and hopefully that will help your husband.