Hi my husband was diagnosed with NET cancer in stomach in November 23.
We have been patient with the hospitals and Drs, did. The additional tests they wanted, and one which required my husband to come off his omoprzole for 2 weeks which end with him in ICU and the test being cancelled as he was producing to much gastric acid and nearly died.
It's 8 months and all that seems to happen is drs discuss his case in MDTs so he is passed from one hospital to another where they have an MDT and then. Passed to another hospital.
Tried to raise with patient relations and told to contact the other hospitals.
Feeling very frustrated and my husband's pain is getting worse and no one not even our nurse seems sure what is going on.
The MDTs have said gastrecomy and lymphectomy a number of times but because of locations of tumors it feels like the hospitals are passing him off to someone else.
My husband had to bowl perforations in 2017 so they say may be difficult to do surgery, and that the largest tumor has been there since 2017 and no one noticed.
I really don't know what to do, we are both scared.
Hi so sorry to hear your sad story. I think my first port of call would be my GP. I would get a face to face appointment and explain whats been going on. I would then phone the secretaries of all the consultants he has seen and ask for an urgent appointment to discus any further treatment plan. Then i would approach every hospital he has been to and make a huge complaint to their PALS department so the all now what is going on. You have to make a big fuss nowdays to been seen and heard. I know its difficult to do sometimes but needs must. Try to get your family onboard and write letter, email, and telephone all these departments to make them aware you are very upset by this situation. I think you are right they are just passing him around to different hospitals but make a stand and ask all the hospital PALS departments for help. I wish you all the best xx
Oh my goodness. How awful.
I agree with the previous reply. You need to dig your heels in & shout to get heard.
the problem with NETs is that nobody knows until it is too late.
I do feel for you. Not sure where you are but can you not ask to be referred to another hospital/team?
we have been very fortunate with the team treating my husband, it has all been like clockwork.
there are not many hospitals who actually specialise in NETs. Have you also tried reaching out to Planet Cancer?
i really do wish you both the very best of luck & keep us all updated.
Thank you, I will look into planet Cancer. Was speaking to someone who suggested Liverpool or Christie's so will do some more research. Thank you very much.
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