Hi My name is Karen, a very dear friend of mine has recently been diagnosed with Gastric Mucous Membrane Adenocarcinoma and Para-aortic lymphadenopathy, I think this means he has cancer in and around the stomach and in lymph nodes around the aorta. He has been given a very short life expectancy. We would really like another opinion for treatment. Can you give me some direction who is the top specialist in Ireland, UK, Worldwide and any contact details or advice you have would be very helpful. Thank you Karen
Hello sorry to hear your news. Things you can do... look up PSOGI on Internet, contact a lead member, describe your situation ask if anything can be done. Concerns world leading surgeons and oncologists re gastric cancer. Cyto reductive surgery (CRS), HIPEC and gastrectomy are available in france for advanced gastric cancer, as is PIPAC. Consider micro satellite instability (MSI test) - inexpensive quick test on NHS to see if you are suitable for immunotherapy.
Thank you SDH. I would be very grateful if I could communicate with you privately to hopefully learn more about what you know about treatments like immunotherapy?
No worries. Let me know how you get on. I was told I didn't have much time last summer and I am still here I feel better than I did last Summer. Some of the oncologists have the bedside manner of a Nazi! Or at least don't think about the impact of what they say. Ignore them, tell them you don't want to know timescales because that is not helpful and they don't know anyway.
Please may I inquire about the extent of spread? Or do they not really know? If your friend's situation is anything like mine then I will bore you with the detail so that he can possibly follow the same route...
There is an excellent person called SDH on here - look at her profile and connect with her. She is doing an amazing amount to find out more and bring professionals together to work out more re immunotherapy for gastric cancer. Also she is in hands setting up a specific gastric cancer charity in the UK. They could have a sister charity in Ireland? We need a voice to push for more treatment options. It is really unfair that gastric cancer patients are the poor relation who have no real treatment options.
I agree with you Meg1980, there are treatment options as in immunotherapy and targeted therapy such as Cyrmaza, keytruda and novulimab ( I hope I spelt it right) but all not available on NHS for gastric cancer patients basically we have to fund it ourselves.
i am not am expert in anything, I am just trying to stay alive.
Your friend’s condition isn’t the same as mine. Could he ask for a second opinion? Look at the list of doctors at the Marsden hospital and try to identify someone whose profile mentions your friend’s type of cancer. The Christie in Manchester also has Upper GI specialists. Perhaps others on here know of others who specialise in upper GI?
i would also go onto findmeacure.com, enter the type of cancer and rviePara-aortic lymphadenopathy the on-going trials that are relevant. Look at th inclusion and exclusion criteria. Take a note of the NCT number then look it up on Google - this will enable you to quickly find the contact name of the person and institute who are running the trial. Email the trial lead (use google translate to translate your English email in whatever language is relevant). Detail your friend’s current situation and treatments to date and ask their opinion on trial suitability and or private treatment.
