Hi I'm new here.

I'm sorry you are going through this. I hope your son is ok or at the worst, they've caught it early. 

Someone with lynch syndrome recently posted here. Hopefully he or someone else with that syndrome will post. In case you are not found to have lynch syndrome, there are other genetic conditions that lead to a family tendency towards bowel cancer.  There aren't tests for all of them so I'd assume you have a genetic predisposition of some sort and make sure all your blood relatives are aware. They should get earlier and more frequent checks. 

Your cancer may be "terminal" in that they don't expect to cure you. But you may survive with good quality of life for quite a while. Treatments have gotten very good. I have even heard of "terminal" patients being "cured" so don't give up that last sliver of hope. 

Hi x thank you for sharing your cancer journey so far xx it’s really tough and I completely empathise with you. 

I’ve also suffered from anxiety and panic attacks. I’ve used a few things that have helped me learn to stay clam, they may also help you too:

Nature sounds App - which I use at night or when in the shower/getting dressed.

Spotify - guided meditation (The Honest Guys are really good) or relaxing spa playlists. Other playlists include zen, nature, yoga music.

Headspace App - which has a good meditation course called “Coping with Cancer”

Reflexology- I started a few sessions pre-op and it’s been wonderful. Not a huge amount of “evidence” to support its use, but I felt incredibly relaxed after each session - so for me, it worked a treat! I’ve booked some more sessions for the new year. 

Journaling - as suggested by my yoga instructor. I’m not a diary sort of gal, but daily journaling has helped me transfer my worries onto paper. I’ve kept a gratitude list as well, which has helped me to learn to focus on the positives rather than the negatives. Doesn’t always work, to be fair, but it has been a useful coping tool, nonetheless.

i hope some of these modalities can help you too x 

Hi Blondiebird 

Re: Lynch syndrome. The suggestion that I might have it came from analysis of the tumour that was removed during surgery, that showed 'microsatellite instability' (MSI-H).

This was explained to me by the oncologist, as originally my consultant had recommended adjuvant chemotherapy, but this finding of MSI-H apparently meant that the risks would outweigh the benefits. I've subsequently been referred to the genetic history team at the hospital and have filled in a questionaire from them and waiting to hear back.  

Hi POOsticks,

I have just been told today that I have the Braf mutation and testing will be next on the list. From the sounds of it, my treatment is going to be changed. Oncologist has to apply for funding. I am on folfox chemotherapy at the moment. I have 2 more cycles then ct scan. Then consultant in February. It feels like a long wait.

It will indeed change the treatment plan. There is a targeted treatment for braf mutations. I believe it is referred to as Beacon but it may be introduced to you by its drug name. 

I didn't have that mutation so I wasn't offered this treatment. I can't tell you much more about it. 

Hi there. I’ve just read your post re braf and (MSI-H). I also filled out the questionnaire. I also was told chemo would not be any advantage. Very confused about all this. I am 6 months post colorectal surgery and have just phoned my gp for bloods to be done as I haven’t been feeling great. Back pain and nasty tummy cramps. Feel I’ve been swept under the carpet tbh. Hopefully my gp can help.

I can't comment on BRAF, but with regard to the MSI-H, the way the oncologist explained it to me is that it's a genetic condition the effect of which is that your body is not as good as repairing any mistakes that might be made when cells divide ('mismatch repair'). This means that any inadvertent errors or mutations that happen when cells divide become more obvious more quickly. The good news for us is that this means that your own immune system can recognise cancer cells as cancerous sooner than if they were repaired as they more quickly look more different to normal cells. (The bad news is that it could indicate Lynch syndrome, which has an increased risk of other cancers such as endometrial, which I also have) 

With regard to chemotherapy, he explained that statistics and research had shown that the percentage benefit of giving someone with MSI-H chemotherapy was less than the percentage risk of giving it, and so he could not ethically go ahead with the treatment.  I can't remember the exact figures but both percentages (benefits and risks) were quite low - single figures.

Hello, I'm so sorry about your diagnosis- it's such a horrid time. I am no Oncologist but in brief- MSI high could actually be a good thing- if you are it means you could have immunotherapy which works very well for some people- I would ask your team about this- for some people it's had amazing results. Braf is a mutation and as one of the others said I think the drugs they may mean for Braf are usually called 'Beacon' as the clinical trial was called that- the actual drugs are encorafenib and cetuximab but that is more of a mouthful. These should be funded by the NHS as second line ie after chemo- I have heard of some private companies not funding it and thus people going back to the NHS for it. If your team are asking for it for you as first line that is not approved in the UK yet- it has been in America alongside chemo. I hope that helps. I would think the MSI-H part is the most important as that could be a game changer for you and I very much hope it is- far less people are MSI high and it is often people with inherited/ lynch syndrome as I understand it. So while it's awful to have that the amazing researchers have found a good treatment for those it works for (I'm not MSI-H but I am Braf). Really hope this helps

Thank you so much for your reply x this explains so much x wishing you a speedy recovery x

Thank you so much for your reply x this explains many questions I had. Wishing you a seedy recovery x