What shall I do

[diane]

I recently had a CT scan followed by a endoscopic ultrasound of my Pancreas.This has shown that I have multiple cycsts and an enlarged pancreatic duct (currently 7mm).

The surgeon believes that because of this there is a 50% chance that I will get Pacreatic cancer and recommends a total pancreatectomy (and splenectomy). This would result in my becoming Diabetic type 1, and I would require lifelong enzyme and antibiotics replacement.

Alternatively I could opt to go for a surveillance approach by having 6 monthly CT scans bearing in mind that if the pancreas become cancerous the scan may not identify this in time to then carry out the necessary operation.

I was wondering if anyone else on this forum has experienced this and could comment on my situation.

I am 70 years of age and very healthy at present. At the moment I have decided to wait until the next scan (October) to see if there has been any change. I also plan to ask my GP to arrange a second opinion.

Thanks

[Guest]

Hi Diane and welcome to the forum. No one wants to be here but it is a very supportive place.

As to what you should do, I think you are doing it. Where there are options for treatment it is wise to consult with doctors who see cases like yours on a regular basis, they are likely to have more experience of the odds on what might happen and how quickly cancer could develop. Generally pancreatic cancers grow very slowly for the first few years but there are exceptions so checking it out is a good plan. When you ask for your 2nd opinion referral make sure you are referred to a known centre of excellence for pancreatic issues and to a doctor who has experience. This is likely to be a teaching hospital or a regional centre.

Radical surgery on this scale is not for the faint hearted so you are right to be cautious. It may be that after further consultation you think it wise but at least you will be well prepared for the outcomes. Sometimes you can ask to speak to a patient who has had this type of procedure which might be reassuring.

I don't know if it helps but I think you are doing all the right things and it's what I would do in the circumstances.

Good luck and keep in touch,

Marmalade x

[sandraW]

Hi Dianne,

This is what happened with my husband Trevor.

He had never been ill and never been to the doctors for years was 65 years old and still working full time in his removal business.

At the latter end of 2011 he was feeling generally unwell, pains in his tummy, different bowel habits, he was referred to a consultant, had CT and a sigmoidoscopy, which showed that he had diverticulitis, but what they didn't tell us is that the CT showed a shadow on his pancreas.

He still wasn't himself and whilst on holiday in the November I realised just how very tired he was, but put it down to the fact he was self employed, and had been working hard as our son had been ill and off work.

He continued to feel unwell, tired and was loosing weight, not rapidly but about 2 - 3 stone over a 6 month period, he was also diagnosed with type 2 diabetes.

On 1st May 2013 he was sent for an ultrasound on his Gall Bladder, purely by chance, they found a cyst on the tail of his pancreas that as they described "was waving at them".

We were told by the GP it was nothing to worry about and waited 13 weeks to see a consultant regarding having an endoscopy, then waited another 3 weeks for a CT scan where they found he had a 10 cm tumour on his pancreas that had spread to his spleen.

On the 11th September he had an operation to remove 2 thirds of his pancreas and his spleen,

the consultant got the margins but 2 of the lymph nodes removed showed cancerous cells.

He made an amazing recovery and felt much better, 6 weeks later he started a course of 5FU,

but in the January 2014 they found his tumour markers had risen, after a CT they found tumours in his liver, so switched to him to Folfirinox.

He had a chemo break of 5 months when he felt really well, from end of May until restarting Folfirinox in the November of 2014.

By the end of February 2015 the chemo had stopped working, and he became jaundiced in mid March, but was still reasonably well in himself. He was finally admitted for a drain/stent on the 14th April and passed away on the 24th April.

I can't advise you what to do, and obviously yours will probably be a totally different scenario, but I think you should talk to our nurses, they will be able to give you invaluable advice, and are very approachable.

I am sorry if this has upset you in any way, please take care, and let us know how you are doing love sandra x

[Didge]

Hi there. I am going to stick my neck out here and say go with your consultant's recommendations as long as he is an expert in his field as others have mentioned. I note that you have not had a biopsy but your consultant must have a reason for thinking that you will develop pancreatic cancer and it so deadly that I would not take the risk. Or at least so I say from the comfort of my arm chair when it is not me that is facing a big op. Only you can decide but without a different advice from someone equally experienced in the field I think it could prove dangerous to ignore the recommendation. One small thing is that you may not need antibiotics for the rest of your life. My partner was told by his surgeon (he had his spleen removed too) that many of his patients took penicillin for about a year and then stopped with no ill effects. It is just precautionary not compulsory. The enzymes though would need to be taken in order to digest food. Very best of luck.

[Dandygal76]

I would make sure any second opinion is at one of the pancreatic cancer specialist centres - the nurses will be able to advise you where. It is important to get your advice from the right place and the right people and timely.

If you want personal advice from me I would never risk this disease and go for the op (and I know that is not an easy decision and has consequences). However, I am tainted by my experiences with my dad and my decision would be biased by that. 50:50 of developing this cancer are not the best of odds to be honest. x

[diane]

Thanks a lot for your replies to my post. It is really helpful to get advice/comment from people who have had experience of or understand the situation I am in. I have an appointment next Friday to speak with my GP but I hope to speak with one of the nurses before then to make sure I ask the right questions. I'll let you know her advice. Thanks again. X

[AnneD]

Hello Diane,

I am a little late to this discussion I'm afraid having just been on a short break to Bruges.

I had a distal pancreatectomy and splenectomy in 2009 and a Whipple in 2010 so now have no pancreas or spleen. These surgeries followed six-monthly scanning which showed a gradually and then rapidly expanding pancreatic duct. My consultant had a high suspicion of cancer in the IPMN that I had and so I had the surgeries. There was indeed adenocarcinoma in the tumours.

I am so pleased that I had my pancreas removed.

It is not easy having no pancreas.

I take daily penicillin, Creon with food and of course insulin to deal with the diabetes.

Other than that I am pretty well and enjoying life with my husband, children and grandchildren.

My consultant's intuition was right and I wouldn't have risked waiting.

Hope you have a successful next consultation and please ask me if I can help in any way.

Best wishes,

Anne.

[PCUK Nurse Dianne]

HI Diane,

Thank you for posting on the forum. I would be happy to discuss this with you, as there are some guidelines associated with cystic tumours and this is an issue that we have quite a few calls about. I will email you in the first instance as the support line has closed for today, however of course do feel free to call back tomorrow if this would be helpful.

The support line free call number is: 0808 801 0707.

with kind regards,

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support line: 0808 801 07070

Email: nurse@pancreaticcancer.org.uk