Ay least a year to diagnosis

Blackwater5

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46
About a year ago )or more) I saw my GP with stomach pain. I'd lost some weight but was trying to through diet and exercise. I actually saw the doctor face to face and was told I had IBS after some tests for stomach problems. Since then I lost a lot of weight and in late Autumn was told I was a Type 2 diabetic and given lipigliptin. This gave me a rare autoimmune skin blistering disease which I hope won't return after I finish my current course of steroids. I was put on a low dose of Jardiance.
Early this year I saw a different GP as I was still losing weight and still had stomach pains. After many blood tests she orderd a CT scan which I had last week. Yesterday I was told that I had stage 4 pancreatic cancer, so I assume that the diabetes is Type 3c caused by that and I may need insulin or a different tablet for the diabetes.
But I am, although still in shock, angry that although I now know that my symptoms before the diabetes (when my BS went from normal to an HB1ac of 567 in 4 months) that if I had had the CT scan a lot earlier it could have been caught and treated. I had the main symptoms, over 60, rapid weight loss, eventually developing diabetes and so on) but anything connected with my pancrea took a very long time (a year or so) to check with either a scan or even seeing an encronologist to learn about the diabetes other than assuming it was type 2 because 18 months or so ago I was overweight.
My apologies for the rant.
 

JaneC

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201
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You poor thing, what a shock and you are totally entitled to a huge rant! The main thing now is probably to put all the hassle you've had behind you, difficult as this may be and concentrate on the best way to get all the help you need to deal with the pancreatic diagnosis and to find the best possible advice from your medics to manage this. Big hugs.
 

Antje77

Oracle
Retired Moderator
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19,284
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LADA
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My apologies for the rant.
Don't apologise for the rant, if anything's worth a rant, this is it.

I'm so very sorry about this diagnosis.

I'm tagging @Riva_Roxaban , who is also living with cancer (albeit a different one) and who's had some more time than you've had to try to get used to the diagnosis, just in case you find it helpful to talk to someone in a similar situation.
He's got a good head and a wicked sense of humour, which might help.

In any case, don't hesitate to keep posting whenever you need to rant or just share your thoughts!
 
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EllieM

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I'm so sorry to hear this news @Blackwater5 .

Hopefully now yo have the correct diagnosis things will improve for your but I totally agree with the others that if anything is worthy of a rant, this is.

Sending lots and lots of virtual hugs from New Zealand.
 

Riva_Roxaban

Well-Known Member
Messages
3,020
Type of diabetes
Type 2
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Diet only
arly this year I saw a different GP as I was still losing weight and still had stomach pains.

After many blood tests she orderd a CT scan which I had last week.

Yesterday I was told that I had stage 4 pancreatic cancer, so I assume that the diabetes is Type 3c caused by that and I may need insulin or a different tablet for the diabetes.

But I am, although still in shock, angry that although I now know that my symptoms before the diabetes (when my BS went from normal to an HB1ac of 567 in 4 months) that if I had had the CT scan a lot earlier it could have been caught and treated.

I had the main symptoms, over 60, rapid weight loss, eventually developing diabetes and so on) but anything connected with my pancrea took a very long time (a year or so) to check with either a scan or even seeing an encronologist to learn about the diabetes other than assuming it was type 2 because 18 months or so ago I was overweight.
Regarding blood tests and a earlier cancer diagnosis, I had blood tests done at the usual pathology lab in December 2020 which all came back as normal. I had blood test done in April 2021 which had completely gone berserk, blood counts down, iron down. So more blood tests and stool tests were done and there was blood in my stools.

I had a colonoscopy done within several weeks, and they found one particular large (52mm) polyp in my.colon that was bleeding. Biopsies came back that it was cancer.

Had further discussions with surgical unit, and my nurse navigator at the base hospital on what treatment to have. I was given three choices to think about

Surgery to remove the colon and replace with a colostomy bag. X
Chemo therapy. X
Palliative care. ✓

Had a CT scan done which confirmed the earlier diagnosed the problem as metastatic colon cancer, which will spread to other
organs.

My partner and I discussed my treatment options with the nurse navigator who has been my go between the public and private health systems. I made the final decision of having palliative care.

Now getting back to being a T2 diabetic, my palliative care GP asked me what I wanted to cared for out of the problems I have. I just said treat the cancer.

I have been on some great pain medication that I have never heard of before, which are getting stronger each time I see the GP. I get a blood and iron transfusion every couple of months.

Worry think about what choices of treatment you are / will be getting for the cancer from the NHS, forget anything else. Deal with the more important one first.

As a final note voluntary assisted dying has become legal here in Queensland and comes in effect in January 2023, when the pain gets to bad I will be using that exit.

Best of luck to you as well.

Thanks for the tag @Antje77.

Edit: It was one year ago that I got the confirmed diagnosis on the 26th May 22.
 

Blackwater5

Well-Known Member
Messages
46
Regarding blood tests and a earlier cancer diagnosis, I had blood tests done at the usual pathology lab in December 2020 which all came back as normal. I had blood test done in April 2021 which had completely gone berserk, blood counts down, iron down. So more blood tests and stool tests were done and there was blood in my stools.

I had a colonoscopy done within several weeks, and they found one particular large (52mm) polyp in my.colon that was bleeding. Biopsies came back that it was cancer.

Had further discussions with surgical unit, and my nurse navigator at the base hospital on what treatment to have. I was given three choices to think about

Surgery to remove the colon and replace with a colostomy bag. X
Chemo therapy. X
Palliative care. ✓

Had a CT scan done which confirmed the earlier diagnosed the problem as metastatic colon cancer, which will spread to other
organs.

My partner and I discussed my treatment options with the nurse navigator who has been my go between the public and private health systems. I made the final decision of having palliative care.

Now getting back to being a T2 diabetic, my palliative care GP asked me what I wanted to cared for out of the problems I have. I just said treat the cancer.

I have been on some great pain medication that I have never heard of before, which are getting stronger each time I see the GP. I get a blood and iron transfusion every couple of months.

Worry think about what choices of treatment you are / will be getting for the cancer from the NHS, forget anything else. Deal with the more important one first.

As a final note voluntary assisted dying has become legal here in Queensland and comes in effect in January 2023, when the pain gets to bad I will be using that exit.

Best of luck to you as well.

Thanks for the tag @Antje77.

Edit: It was one year ago that I got the confirmed diagnosis on the 26th May 22.

Thanks for the info on you Riva. At least you have been living with cancer for a year already. I probably don't have4 that long.
I've known people with cancer including a good freind years ago who I was with when she went into hospital for the last time and she had a blood cancer that was controlled for many years and is often curable these days.
You are also lucky that you have family. I think its important to count your blessings.
For me, I've not been feeling well for maybe 18 months and have talked to many GPs frequently and actually saw one face to face twice. During the COVID lockdown doctors wouldn't see you unless they thought it an emergency and even now most consultations are by telephone. So the first one I spoke to told me I needed to eat more because I was losing weight although I had been overweight before. When I told him I had stomach pains he did the ests for stomach ulcers, urinary tract infections and so on, actually saw me to feel my stomach, and said I had IBS when the tests came back normal. I carried on losing weight and started to get diabetic symptoms, he tested for diabetes, my HB1ac was just in the prediabetic range, so I got a few dietary instructions. After a few months and blood tests I was just in the diabetic range so the diabetic nurse gave me information about diet and exercise and I was told I had Type 2. My levels continued increasing quickly so I was given lipigliptin which gave me a horrible autoimmune skin disease called pemphigoid. The gliptins were stopped, I was given a 2 week course of steroids but nobody bothered telling me or any doctor that I had to gradually reduce them so I stopped when I'd finished the original dose and the blisters came back. During this time I was still losing weight and my HB1ac was still going up, the gliptins may have slowed the rise but I still have some of the effects of it. I was then given Jardiance which, with diet, brought my sugars to normal but I was still losing weight. About 5 months ago I saw a different, part-time doctor who did a lot of blood tests which showed a slightly lower white blood cell count and slightly lower platelets. Foinaly, within the last month, with me looking like a walking skeleton, I had a CT scan within 2 weeks which showed that I had a large mass in my panceas and a small amount of cancer in my lungs. I was told this just over 2 days ago.

I am alone, no longer have family or close friends and have been very isolated due yto CPVID and since things opened up because I've been feeling too ill to go out and mix with people. The closest I have to a freind is an almost blind neighbour in her nineties. So the news that my pancreatic cancer couldn't be treated although chemotherapy was a possibility if I was well enough, was and is something I haven't been able to process yet. I've started making preparations, first for my cat who is my companion and I suppose you could call my family. I have a lot to do, including telling my sister-in-law. She and my late husband were 20 years apart in age so they were never close and after she had some big upheavals in her life3 we just vexchange Christmas cards, but I couldn't de4cide when the best time is to call her.

The hospital wants to do a biopsy but, thinking about it I wonder what the point is unless it's to decide if I can have chemotherapy.. I don't think I want that as the effects are so bad. So I was told I might have a year but I know that pancreatic cancer, even if caught very early when surgery is possible, has about a 25% success rate. When it has spread most people don't have long.
I was told it would be painless but I don't believe that. Maybe if you are on heavy painkillers it is. I've talen no more than paracetomol so far but I expect that will change. The reason for the weight loss is that the pancreas makes enzymes for digestion and if it is damaged you can't absorb nutrients from your food, so I've been given pig enzyme capsules yeserday. In the same way the pancreas slows and eventually stops making insulin if you have something that damages it too much, so maybe I'll have to go onto insulin.
The way I feel now I don't think I have long to go. But I wish that I'd been sent for a scan early on as just about the only symptom I didn't have was jaundice.

Livi9ng in the UK healthcare is free but has been underfunded for years and COVID has probably killed more people who had health problems that either weren't diagnosed or weren't treated. Even chemotherapy was stopped. And today on the news I heard that there has been a big rise in cancer cases in my part of England since things opened up.

Assisted dying is still illegal here. There have been several attempts to change the law but there is a big lobby against it.
I now take so many pills I feel as though I must rattle.

I'll finish this by wishing you luck on your journey.
 

Blackwater5

Well-Known Member
Messages
46
Thanks to everyone for their replies. I still haven't got my head around things yet and all the support people I was told would contact me haven't had time to even get letters yet. Yes, the NHS still uses snail mail for letters.
 

AndBreathe

Master
Retired Moderator
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11,320
Type of diabetes
I reversed my Type 2
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Thanks to everyone for their replies. I still haven't got my head around things yet and all the support people I was told would contact me haven't had time to even get letters yet. Yes, the NHS still uses snail mail for letters.

Blackwater - I'm so sorry to hear of your diagnosis. COVID has cost so many so much in ways that were totally unintended and likely as yet not fully understood. I'm so sorry you are on the horrid end of that particular short stick.

In terms f support, I don't know if MacMillan had been mentioned at all?

When my Mother was given a fairly stark cancer diagnosis, she was put in contact with the MacMillan organisation whom our whole family found to be wonderful. My Mother's Mac Nurse was a lovely, kind woman who did so much for us, in terms of sorting out all sorts of incredible things for Mum, so that she could remain, on her own at home, living as normally as possible. She spent time talking to her and was happy to speak to my brother and I (with her consent and knowledge) and help us to understand what was going on, what might (or not) happen, and generally support us.

You can contact MacMillan directly, and they have a support line that operates 7-days a week 8am - 8pm, and they have an online community too. Some of their contact details are here:

https://www.macmillan.org.uk/cancer...hucnq-nvksqufjdwrjroctx8qavd_bwe&gclsrc=aw.ds

I really do wish you well. It is a horrid tie for you, but I do hope once you get some enzymes in you you will begin to get better benefits from your food. That may help you feel a bit better in yourself.
 

VashtiB

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2,283
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@Blackwater5
Another virtual hug from me.

If anyone had a great reason to rant it would be you. I am sorry to hear of your situation.

I wish you well and really hope you feel free to use the forum to vent or whatever whenever you need to.

Take care and my deep sympathies.