Newbie - Whipples upcoming, inconclusive biopsies

[angelina27]

Hello everyone,

Finally plucked up the courage to register onto the forum. My backstory is: I started having acute pancreatitis from September 2019, which progressed to chronic pancreatitis in April, and after suspicious mass on my pancreatic head was discovered via 2 x MRIs, I had an Endoscopic biopsy, but the results were inconclusive.

Following the repeat biopsy, and another inconclusive result, my consultant and his team have recommended I have Whipple Procedure. I have been in total agony since March 2020, from aches, pains, weight loss, nausea and vomiting. Almost grateful for lockdown as I have not been great company!

So now I see an end in sight with Whipple, hoping this is next month. Taking Creon, have a pretty useless morphine patch and take bog standard pain killers most of the time.

I wanted to know if there is anyone on here in my situation, i.e. having or had Whipple with an inconclusive result? How do you manage pain, food and life? And how do you manage to sleep?!

And what do you tell people? What do you tell people you have been diagnosed with?

I find my family and friends don't understand why it's inconclusive and I'd feel fraudulent to say I have pancreatic cancer.

Would love to know your thoughts and experiences.

Lots of love

Angela xxx

[PCUK Nurse Rachel R]

Hi angelina27,

It's Rachel here, one of the nurses at the charity. Thanks so much for your post and for being brave putting yourself out there. I'm sure people will comment to let you know of their experiences. I just wanted to say hi and welcome you here. If you would like a chat to us on the support line we'd be more than happy to go through some things that may be helpful for you. Our contact details are in the signature below. I'm sure this is an anxious time for you as you prepare for surgery and consider what life will be like following. I hope that things go really well, that you get clear answers and, most importantly that your daily quality of life improves enormously.

All the best,

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[angelina27]

Hi Rachel

Thank you for your reply! I remember we spoke back in May the day before my first EUS biopsy. You sent me lots of useful information.

I will no doubt be in touch over the phone or email again

Angela x

[Jess]

HI, Angela, My husbands situation is similar to yours.. He has chronic pancreatitis and diabetes.. He recently became very jaundiced and after an attempted stent and various scans a blockage was discovered.. Biopsys indicate cancer.. it isn't 100% conclusive.. But they feel confident enough that it is to do a total pancreatectomy.. Its very frustrating not to be certain and I agree the "inconclusive" part is difficult to explain... In my husbands case they feel the safest way is to act now.. And I'm thankful he has this chance although really scared about future. Sending you best wishes. Jess

[angelina27]

Hi Jess

Thank you so much for sharing this. It's somewhat comforting to know that I am not alone. I too have developed jaundice and currently am in hospital. Same thing, growth had increased and they are treating it as cancer. However, I am waiting for the consultant to tell me whether they will start chemo or go ahead with the Whipple procedure. He wants the latter as starting chemo to shrink the growth will mean delay of the op.

Your husband will be having a total pancreatectomy?? Wow that seems a bit extreme. How do you both feel about this? Apart from scared, was there a choice of procedures and outcomes?

I hope your husband is finding a way to keep his spirits up. It is a lot to process isn't it? I wonder if, like me, he wasn't truly aware of what the pancreas actually did before ?

Take care and hope you are both finding this forum as comforting as I am.

Angela x

[Jess]

Hi Angela.. I apologise.. I wrote a long post and lost it somehow my husband has his operation tomorrow.. It could be a whipple now! But they won't know until they start the surgery.. I'm sorry you have to deal with jaundice now on top of everything... I guess we have to be grateful to have surgery as an option... After reading so many sad stories on here ... I hope everything goes well for you.. It helps so much to know we're not alone in this... Best wishes and keep in touch.. Jess xx

[angelina27]

Hi Jess

All the best for your husband's operation. Whatever path, I hope he makes a swift recovery.

Angela xx

[Jess]

Hi Angela, I hope you are keeping well considering the circumstances.. Have you had any decisions made regarding your treatment.. My husband had the Whipple proceedure.. And I'm told he's doing well.. The op took 7 hrs... It was a difficult wait as you can imagine. But hopefully he will keep improving.. Sending best wishes. Jess

[angelina27]

Hi Jess

My whipple's procedure is on Mon

Nervous as anything.

Hope your hubby is recovering well?

Angela