I’m new to the group....hello to all

Hi Arrowe

Sorry to hear about both your and your husband’s diagnosis - that’s really tough to deal with. Sending you love and virtual hugs.

I’m 66 and was diagnosed with GIST in June 2019. I’m treated at the Royal Marsden and can’t say enough good things about the care there. Due to the size of the tumour I was prescribed Imatinib (Glivec) to try and shrink it before surgery. It did shrink by about 30% and I had surgery last August.  Going well so far.
The most important thing to know is that if you are not being treated at a GIST specialist centre you must ask to be referred to one for a second opinion before you have surgery. This is because GIST is a rare sarcoma cancer and NICE guidelines state treatment must be managed at a specialist centre where there is Sarcoma Multi Disciplinary Team with “experience  of managing significant volumes of GIST patients”. There’s more about this and a lot more on the GIST Cancer website - gistcancer.org.uk.  There’s a also a very helpful email group of fellow ‘Gisters’.

Wishing you and your husband all the best.

Jenny

(Sth London)

Thank you so much for your prompt reply. My reply has been delayed by my husband’s recent hospital stay for removal of his lung tumour and subsequent discharge home.

I was not prepared for the amount of nursing he required since coming home. Despite the fact that his procedure was keyhole, there have been complications with the drain, resulting in him being back in hospital via 999. He also has a complicated meds regime, and I have felt overwhelmed. At no stage during his preparation for hospital, we weren’t asked if I would be able to cope. As his named carer, I would have expected that. The hospital, although fantastic, seems to regard a keyhole procedure as a minor op, which brings me to my own situation.

My own admission date was today, but after discussion with the surgeon he agreed to delay my treatment until next month. Mine is only a small GIST-4cm, with the hope that a keyhole surgery will remove it completely, requiring no other treatment.

My worry is that there is no way that my husband could provide the care and supervision of meds that I am currently providing for him. It looks as though I may be discharged after 4 days!

I spoke to a Macmillan advisor yesterday who suggested that I inform my hospital that I cannot be discharged to an “unsafe environment “......his words.

Before I contact my named nurse, I wonder if you have any thoughts?

In answer to your original question, my local hospital, the Royal Liverpool University Hospital is a centre of excellence in GISTs, so I feel confident in my planned treatment.

Thank you again

Hi, I'm sorry to hear your husband, and you, had such a rough time post his op. And of course it naturally makes you worry about how you'll both manage after your op. You've probably spoken with your specialist nurse by now and hopefully made clear your situation. You certainly shouldn't be discharged post op if you can't get enough care once home. District nursing and social care services should be put in place as needed. The discharge plan should be put in place ideally preoperatively.

I wish I had more advice to offer.

Good luck xx

Thanks again for your help. I still haven’t spoken to my specialist nurse as I am still nursing my husband. We have unfortunately discovered the limitations of the district nursing service and social services. My need for assistance has been in the middle of the night, when he needed lifting up to take his pain killing medication, and neither of those services can help in that situation. I am at the moment delaying my treatment as the NHS appears to be operating a conveyer belt system, due to the Covid emergency......no criticism of them, they are trying to deal with the the backlog as best they can.

Can you think back to when you had your operation? How poorly were you, and did you have a complicated meds regime? How did you cope with eating post op? How many days did you remain in hospital?

If you could answer those questions it would really help me decide how long I should delay my surgery.

Thank you again

1. Rhoni....Wirral Cheshire

Hi again

I can remember my post op vividly but I don’t think my experience will be the same as yours so probably won’t be much help to you. I had open surgery not keyhole and had a total gastrectomy, and removal of other organs that my GIST was attached to. I was in hospital for 11 days and was still quite weak when I got home. I was lucky that my husband and daughter were on hand to help but I was able to move unaided (if v slowly), eat small soft meals, and look after my own medication and personal care etc. I had very good pain control medication!

You might be better starting another thread on this Stomach Cancer forum to ask about recovery after keyhole surgery as I’m sure there will be others who have had it. I understand recovery from keyhole surgery is usually much quicker. Alternatively, and as GIST is quite rare there’s not very much about it on this site, you could ask on the GIST cancer email group I mentioned before. I have seen some emails there from people who’ve had keyhole procedures and it’s a friendly group.  They also have some leaflets about GIST and eating after surgery etc. written by GIST patients - always good to have as much knowledge as possible beforehand I think. 

Sorry, don’t think I’ve been much help.

Thank you so much for your reply. I have found the GIST website that you suggested. I’ve already gained a lot of information.

Thank you for your kindness in replying to me x