pnet husband having surgery soon

[Tessa48]

Hi All, never thought I would find myself on this forum. My husband who is 48 was found to have a Neuroendocrine Tumor as an incidental finding on a ct scan for something else. It was all a bit of a shock, I am a trained nurse now working with kids not adults but before seeing the consultant my mind was in over drive. Upshot is it’s a small 2.3cm tumor which the consultant is fairly confident isn’t nasty but obviously can’t be 100 percent sure until it’s out. My husband is to have a laprascopic spleen preserving distal pamcrearectomy at the end of the month. I am just looking for some advice from the wonderful and knowledgable people on this forum. Thank you in advance. Tessa

[sandraW]

Hi Tessa, and welcome to the forum where no one wants to be but hopefully you will get lots of helpful advice and support.

My husband's tumour was in the tail of his pancreas, but he lost his spleen too. he recovered from his surgery amazingly well and was pottering in the garden 4 weeks after surgery and he had a scar like an upside down smile that went from one side of his chest to the other.

He used to take Creon, even though we were never sure if he needed it or not.

The nurses on here are amazing, please give them a ring they will be able to give you lots of advice I am sure, please let us know how your husband is doing, take care sandrax xx

[PCUK Nurse Jeni]

Hi Tessa,

Thank you for your post.

I am sorry to hear that your husband has been diagnosed with a Neuro Endocrine tumour. As you say, a lot of learning to take on board and a new area to gain information about.

Tessa, I wonder whether you have been in touch with the NET foundation at all?

https://www.netpatientfoundation.org/

They would be best placed to advise you given this is a more specific area of cancer care - they also have a support line with trained nurses - you can call them here:

Help & support:

0800 434 6476

We would recommend anyone with a Neuroendocrine tumour speak to them, as they will be more specifically geared towards supporting patients with this diagnosis.

I hope this helps?

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Tessa48]

Hi again!

Many thanks to both of you for replying I will definitely contact the net foundation. Our consultant was lovely and given the circumstances very reassuring. He said he does not foresee my husband requiring any follow up care(apart from one appt with him to review recovery from surgery). He said he will remove less than 20 percent of the pancreas. Let’s hope it all goes according to plan but as a nurse I know there is a possibility of complications. Sandra so glad to hear your husbands positive recovery story. I will post again after surgery. Be so grateful if you will keep my fab husband and 2 amazing teens in your thoughts as they will be in the middle of exams during this time. Take care to all of you.

[Tessa48]

Hi All, I wasn’t sure whether to post this update as so many are dealing with so much. Our story is a positive one and in many ways it makes me feel guilty now for sharing our experience in the first place.

My husband had keyhole surgery to remove the tail of his pancreas for a suspected neuroendocrine tumour. Unfortunately they also had to remove his spleen as this was attached. I have to say keyhole surgery is amazing he was out of hospital 48 hours after surgery and although sore 10 days after the op was almost back to normal. We had a 5 week wait to get the results of the biopsy and I have to say I went into the consultants office on shaky legs. We then got the amazing news that it wasn’t a NET but a bit of accessory spleen tissue embedded in the pancreas so been there since embryonic stage!! My feelings of relief are indescribable. Surgeon said there was no way of being sure of this without the surgery. My husband has needed immunisations and will be on life long antibiotics but this is a small price to pay. I am very grateful to this forum for allowing me to share this as the 4 months from finding the lesion to getting the results was really hard. I wish all on this forum could have our outcome, please stay strong and keep positive you are truly the most inspirational people.xx

[PCUK Nurse Rachel R]

Dear Tessa48

That's is wonderful news. Thanks for sharing and for your kind words for the Forum Family.

Best wishes

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[toodotty]

Hi Tessa48,

Thank you for sharing with us and I am delighted with your news. It is really important that we have positive news here as well to give others and us HOPE. Now get out and start doing some of those things you were putting off. Instead of waiting until your husband is 50 to have that party/special holiday etc., why not plan it for his 50th year which is next year!

Best wishes

toodotty

xxx