New to the forum and just diagnosed with G.I.S.T.

Moy 3 months ago

14 replies
36 subscribers
479 views

Good morning everyone!

I have just found your forum and am desperate to share what's been going on for me, so I hope you'll forgive me if I splurge! But first, I'll share a bit about myself. I'm 73 and have a long and loving marriage (54 years!). I have two grown up children - one who lives locally and one who lives at the other end of the country! I have three granddaughters and two grandsons ranging in age from 9 - 19. The families are both busy, busy, busy - just as I was when my kids were young.

Recently I fell and had a CT scan which picked up an abnormality between my Pancreas and Duodenum. Yesterday, I had a gastroscopy and it was confirmed that I have a gastro intestinal stromal tumour (G.I.S.T.). More tests are to follow to see how deep the tumour has gone etc.and any treatment, or non-treatment will be discussed at a later stage. My next step is to have an endoscopic ultrasound - no date yet.

So far, no one at the hospital has mentioned the word 'cancer' but, having looked up GIST I see it is a soft tissue sarcoma and outcomes can vary according to whether or not it has spread.

I have been told that a Macmillan nurse will contact me within two weeks and that she will now coordinate my appointments etc and will be there to discuss what is happening to me.

Now this is great - but I need to get some things off my chest right now!

Firstly, I have a loving husband who clearly has no understanding of what is going on and how it may be making me feel. He blots out medical information like I blot out what he tells me about his classic cars! Yesterday at 6.00 pm we were in discussion about the gastroscopy results at the hospital and this morning he is helping to set up a field for a three day car event.

I have a daughter who is staying in London yesterday and today with my three granddaughters who are all 'Swifties' and two of whom will be at the big Taylor Swift concert in Wembley tonight. It's no good trying to talk to my daughter today as the excitement levels with the girls are far to high with the girls for her to take any notice of what I'm saying. My son is working. I can speak to him later, but need to get my ducks in a row first.

I don't know which way is up! I am on a see-saw of emotions thinking, 'The tumour has been measured at 1.6mm so far so it may be kept under surveillance.' to, 'The cancer may have spread and the depth may be greater when measured by the ultrasound endoscopy and I could be in for a lot of unpleasant procedures and treatment, depending where it has ended up!'

I am concerned because the CT scan also identified a lung nodule. I had one picked up three years ago which was under the size threshold for surveillance. If it is the same nodule, it has grown. I have one in the other lung that my respiratory consultant isn't worried about, but he is concerned about this one and wants me back at the beginning of October to see what's what!

I have polyps being removed from my colon in two weeks time and they will also be tested for cancer.

I've had blood tests relating to cancer but don't get the results until Sept 5th (coincidentally, the day of my next colonoscopy). I only know they're relating to cancer because I read the name of the test on the blood test form and it tells me what the test means on Patient Access.

And STILL, no one medically involved has actually come out and used the word 'Cancer'!

I'm sorry to have dumped all this here, but believe me when I say that just writing it down has already helped.

I welcome any replies, but even just knowing other people are out there is a great support.

I have chronic respiratory conditions and so also post on the asthma + lung forum, but don't think this is appropriate to post there.

Thank you, if you have taken the time to read this.

xx Moy

Hazel7797 2 months ago in reply to Moy

You're not rambling Moy, you are just doing what we are all here for, to talk to others who are in the same boat as us. You really do have a lot on your plate!

I have my next consultation with my surgeon on Thursday 12th September. He wants me to go on the PATHOS Trial which is aimed at reducing the amount of chemo/radio therapy to lessen the awful side effects. I will be having more tissue taken from my tonsil and a neck dissection to remove the cancerous lymph node, fingers crossed I will not need too much chemo/radio therapy.

Hopefully, yours will be as simple as cancer can be and you don't have to go through too many gruelling treatments (I think that is all that any of us can hope for) I found the 'not knowing' the worst. Once you have a diagnosis you will find that things move fairly quickly and that you will then have a 'solid plan' to work with. I have been told that our type of cancer has got a very high cure rate of 90% so I hold on to that.

I will be thinking of you, let me know how you go.

Take care

Hugs

Hazel x

Moy 2 months ago in reply to Hazel7797

Thank you so much for your reply. I hope your appointment goes well on Thursday and your treatment plan is confirmed.

Yes, it's the uncertainty that is the most difficult thing to deal with. I couldn't agree more. I can cope with anything once I know what I'm dealing with but at the moment I'm 'betwixt and between' as my mother would have said, and it sounds as though you are too.

All the best.

Please let me know how you get on on Thursday.

x Moy

Hazel7797 2 months ago in reply to Moy

Thanks Moy, but

I still hadn't heard anything up until today from ENT about my 'so called' consultation and to hand in my consent form for the PATHOS Trial on Thursday 12th September. And someone from the trial would ring me on Monday. So I rang the hospital operator and asked what time my appointment is. She said that she didn't have me down for an appointment on Thursday? I rang my 'cancer nurse' and (of course) had to leave a message for her to get back to me about it (she hasn't replied to any of my messages to date.

My husband said that perhaps the consultant meant the Monday of the next operation (which is the 23rd?) And, I suppose that is possible. I will ring again tomorrow and ask if they can see an appointment for me on Monday the 23rd September?

Hugs

Hazel x

Moy 2 months ago in reply to Hazel7797

I wonder if you've got anywhere today with finding out what's happening. It seems very strange to have been told you have an appointment when there hasn't been one made. However, things like that are happening at our hospital too, so in a way it doesn't surprise me.

Sometimes they say things and assume that you know what they mean, instead of spelling it out to us in a way that we can properly understand.

I'm waiting to hear if I'm going to have a CT scan before I see the Resp consultant on Oct 2nd. I'm certain that he said I would need it but haven't heard a peep since.

I guess it's disappointing and annoying that your cancer nurse doesn't respond to messages left. We're having this issue with a number of people who leave an answerphone message, say they'll call back but never do. Also, emails aren't always answered.

My daughter works as the admin in a school of just 80 pupils. She said most days she has 500+ emails on the work computer and she simply doesn't have time to respond to them. She tries to filter out any that look urgent but the list keeps growing. Given that she's only dealing with a small school, I dread to think how many messages our medical secretaries are having to respond to, don't you?

Still, understanding the problem doesn't make it go away and when you are concerned about healthcare it can be very worrying.

I hope you get it sorted out soon.

xx Moy