Discussion forum - Pancreatic Cancer UK

Hi Everyone

Please forgive me if there any mistakes in this post this is my first time.

I hope you are all well in these challenging times.

My partner was diagnosed with Pancreatic cancer in December 2019 after various tests and 4 weeks in hospital were the initial diagnosis was gallstones she was then transferred to a bigger hospital in the region and had a the WHIPPLE procedure and spent 9 hours in surgery.

Thankfully she came through this traumatic procedure and after around 3 days in intensive care and 7 days on a normal ward she was discharged just before Christmas which was the best present I have ever and will ever have.

She is currently going through chemotherapy which as I am sure you are all aware is very challenging but she is a strong women and despite the fatigue, diahorrea and sickness feeling she is persevering with chemotherapy.

We are currently through 3 chemotherapy treatments with 9 more to go she is on Folfox I believe and it has been reduced from 100% to 80% which as led to her feeling a little less fatigued but still having the other symptoms

My major concern is that she constantly has stomach pain/tightness which also causes back ache the back ache is not as severe as the stomach ache but still there the best way she as found to describe this to me is it is like someone tighting a belt around her stomach this also makes her breathless at times and limits what she can do around the house we did mention this to the oncologist but he didn't seem concerned.

My concern is that nearly 4 months after surgery surely this should have decreased if not is this normal after a WHIPPLE procedure and when is it likely to stop.

I am really just looking for some guidance with this and any help would be greatly appreciated I just want my beautiful partner to have the best possible chance of recovering.

Thanks in advance for reading my post your support is very much appreciated.

Good morning Slim Shadey,

Thank you for for your post, and welcome to the forum. I am sure you will find the forum family very helpful and supportive in coming time.

I am sure your story resonates with so many others Slim and appreciate all you are both coping with at present.

Slim it might be helpful to have a conversation with us on the support line about your partner's symptoms. It would be helpful to understand how She is managing her pain relief at present, and talk through some aspects. There may be several considerations as to the cause of this pain. Some back pain may be due to referred pain along nerve pathways, called 'neuropathic pain' in medical terms however I suggest a more detailed conversation might be helpful to ask a few questions and understand more about current medications.

Slim please feel free to contact myself or my colleagues on the support line, details below for a more indepth conversation.

I hope this will be helpful and you feel able to touch base.

with kind regards,

Dianne
Pancreatic Cancer specialist nurse
Pancreatic Cancer UK
Support line - 0808 801 0707
open Monday to Friday 10am - 4pm
Email: nurse@pancreaticcancer.org.uk

Hi Slim

I am three and a half years post operation. I had a distal pancreatectomy which removed the body and tail of my pancreas, my spleen, 28 lymph nodes and a resection of my portal vein so a lot of replumbing was required as no doubt was the case with your partner.

I can only reply as a patient so it's important to speak to the professionals and do call the nurses they are so helpful. However what I would say is that I can still get stomach swelling and tightness. In fact I have a large permanent bulge around the scar. I tried to figure out if it was certain foods but after three and a half years the only things I don't eat are lettuce, salad leaves and avocado, but in the first year at least I do recall getting tightness and swelling more after eating. I take 40mg of omeprazle a day and creon with all meals and I don't scrimp on creon. I usually take 5 x 25000 with a main meal and more if I'm having more than one course.

It's very early days and your partners insides have been significantly impacted. At three/four months post op I wasn't doing much at all around the house much as my head was willing my body was still in the early stages of recovery. There is a lot of knitting together to do on the inside. Iwould go for a short walk most days which of course you can't do at the minute. I had a different chemo which luckily I found quite manageable.

It's difficult to stop yourself getting into a cycle of boom and bust, where on the days you're feeling well and you do too much which then can have an impact for a couple of days, so try and not let her do too much at once.

I did see the gastroenterologist about stomach issues towards the end of my first year but in fairness it's difficult for them as they don't see multiple cases so they put me on a low fibre diet but it didn't really change anything. I try and eat regularly before I get to a hungry stage where I would over eat.

Sorry I can't be more help as I know how worrying it all is.

I wish you and you partner well .

Hi Pattip

Fantastic news that you are 3 and half years post op and are doing well.

Thank you for sharing your experience over the last few years which me and my partner have taken on board.

We have been contacted by one of the specialist nurses on this site and she has given us a few ideas of the cause of the tightness.

We realize that every patient has a different recovery from each other it was just advice we were searching for about the cause, as scrolling through the forum no one seemed to have experienced this issue.

So Thank you once again, take care and stay safe.

Pattip wrote:
> Hi Slim
>
> I am three and a half years post operation. I had a distal pancreatectomy
> which removed the body and tail of my pancreas, my spleen, 28 lymph nodes
> and a resection of my portal vein so a lot of replumbing was required as no
> doubt was the case with your partner.
>
> I can only reply as a patient so it's important to speak to the
> professionals and do call the nurses they are so helpful. However what I
> would say is that I can still get stomach swelling and tightness. In fact I
> have a large permanent bulge around the scar. I tried to figure out if it
> was certain foods but after three and a half years the only things I don't
> eat are lettuce, salad leaves and avocado, but in the first year at least I
> do recall getting tightness and swelling more after eating. I take 40mg of
> omeprazle a day and creon with all meals and I don't scrimp on creon. I
> usually take 5 x 25000 with a main meal and more if I'm having more than
> one course.
>
> It's very early days and your partners insides have been significantly
> impacted. At three/four months post op I wasn't doing much at all around
> the house much as my head was willing my body was still in the early stages
> of recovery. There is a lot of knitting together to do on the inside.
> Iwould go for a short walk most days which of course you can't do at the
> minute. I had a different chemo which luckily I found quite manageable.
>
> It's difficult to stop yourself getting into a cycle of boom and bust,
> where on the days you're feeling well and you do too much which then can
> have an impact for a couple of days, so try and not let her do too much at
> once.
>
> I did see the gastroenterologist about stomach issues towards the end of my
> first year but in fairness it's difficult for them as they don't see
> multiple cases so they put me on a low fibre diet but it didn't really
> change anything. I try and eat regularly before I get to a hungry stage
> where I would over eat.
>
> Sorry I can't be more help as I know how worrying it all is.
>
> I wish you and you partner well .


Hi Pattip

I’m sorry to jump in, but can I ask how long it took for you to get your whipple surgery? From the point of referral for your first scan to being operated on? And how long between appointments you waited? And if you truly don’t mind me asking if it was NHS or private?? I’m seriously considering trying to get the money together for private surgery for my dad because I’m terrified of how long things are taking. They haven’t said whether they will operate or not yet