Supporting my adult child with terminal cancer

Thank you for your suggestions. I bought myself this little spring bouquet today from Aldi. I thought you should buy yourself one too. Thinking of the hyacinth and view outside your son’s window.

Beggars belief how such pain exists. 

 xx

AAAAAAAHHHH! Thank you. What a lovely idea. Next best thing to being sent real flowers! I'll follow your suggestion and get myself a bunch too, on my next grocery order. And think of you too when it arrives. May you somehow find the strength to cope with the pain.

We are not going out at the moment as another son is having chemo and is immune deficient. His prognosis is miles better than his brother's. He is having an op to remove the tumour completely after Easter and no spread detectable. It was his health that brought me on to here. I did not find it when my middle son died.

Good grief!!

Is this due to a genetic variation in your family?

We are testing for one. I also have another son. 

No, we had my middle son's biopsies tested, to sequence his genes, as there are a couple of genes that increase chances of stomach cancer. I had a terrifiyng vision of all my other children skyping me as he did to tell me they had cancer. (It was during the pandemic so he used to visit me in my front garden as I was shielding) But tests were negative.

Thymus cancer is exceedingly rare. No knowing how eldest son got it.

How are you testing? Must be difficult if you don't know what your son's primary tumour was. Another of my suggestions ( I do hope you don't find them too impertinent) - get your son's genes tested while he is still here. We had enormous difficulty getting our tests done after my son died as there are all sorts of constraints on getting access to  biopsies (& finding out if indeed any had been done), of a person once they are deceased. Admin, Forms to fill, signatures to get etc. It took a year, almost to the day, to get the all clear. A whole year of extra unnecessary worry.

Here is the info I got from the charity "guts UK" re genetic testing: NB see the bit saying it should be done via NHS no private companies online. Lynch syndrome predisposes to lots of GI tract cancers but quite a few others as well: 

Molecular testing strategies for Lynch syndrome in people with colorectal cancer Diagnostics guidance Published: 22 February 2017 www.nice.org.uk/guidance/dg27

I am so sorry that you have had such a shocking experience and I understand your wish to make sense of what has happened and to ensure that your family are safe. If you wish to explore a genetic link the best place to start would be your families GP who may be able to arrange genetic testing if there is a risk of this and explore whether further testing is available and required. The GP might also be able to find out more details about your sons cancer type from his records perhaps too. This should be done within the NHS please don’t be tempted to pay any of the commercial genetic testing companies as the science is really not their yet and the support if someone has the gene might not be available and the risk needs to be discussed with someone who can provide the right level of support needed. There is an American cancer site that gives some information about cancer and genetic risks here https://www.cancer.net/cancer-types/hereditary-diffuse-gastric-cancer although this cancer is very rare and the only testing that is available in America according to this site is by participating in research trials as it is not recommended for general genetic testing yet as presumably the test needs more research.

Macmillan website suggests the following and you can click this link to find our more https://www.macmillan.org.uk/cancer-information-and-support/worried-about-cancer/causes-and-risk-factors/family-history-genetics-and-cancer-risk and a link here to the above https://www.macmillan.org.uk/cancer-information-and-support/worried-about-cancer/causes-and-risk-factors/other-inherited-conditions-that-can-increase-cancer-risk. You can contact the following organisation to ask for more information https://geneticalliance.org.uk/ and I suspect that they would be able to answer your questions.

Another option if genetic testing is not available is for your family to be part of research Be Part of Research (nihr.ac.uk) and there is a research trial at the moment looking at identifying early gastric cancer that are looking for participants PAN-study: Pan-Cancer Early Detection Study (PAN) Trial ID: NCT03756597 which is open to people over 30 years of age – I cannot give a link but you can search for it with the previous link for be part of research. Do come back to me if you struggle and I will screen shot it for you. Guts UK are also funding some research into stomach cancer but this is when people have an endoscopy and have altered stomach cells but you can read about that here if you wish Stomach CancerDr Marnix Jansen - Guts UK (gutscharity.org.uk). 

As to whether tissue samples are kept by the endoscopy unit I will need to ask about this for you if you don’t mind and I will get back to you as soon as I can but whether these would be able to be released to you for testing is a different matter and you might be able to ask the hospital PALS department who might be able to answer your question for you. Please do come back to me if you have any questions at all

Hi Rebecca 

I couldn’t get into reply suddenly!!

i had to reset my password in the end.

Thank you for this detail of information it will be really helpful.

The consultant has already taken genetic testing or sent for it to be done.

Bedt wishes to you and your son.

I am really pleased to hear the consultant is already dealing with this. It will spare you the additional nightmare of fighting the nhs to get it done. And probably a lot of extra waiting. If it turns out positive at least your other son can start his extra checkups straight away. I hope your sick son is coping well with his chemo. Very best wishes to you and your family. Rebecca

Should your sons turn out to be carrying the Lynch syndrome gene these people might possibly be useful to you

.https://myemail.constantcontact.com/National-Disease-Registration-Service---Newsletter-March.html?soid=1108552320760&aid=I6iQFl6R2e4

Best wishes.Rebecca