Whipple imminent, mass in head of pancreas - is this still classified as cancer

[smileymum]

Hi, new to the site and forum so I hope I have landed in the right place.

I am a fit and well 50 years young mum of 3 (youngest is , working full time. So I am used to being busy and getting on with things, but after suffering increased episodes of abdominal pain I ended up in A&E at the end of May.

Following x-Rays and a CT they told me I had a "well defined mass in the pancreatic head and uncinate process measures 45 x 35mm with central enhancing solid mass and surrounding cystic component with peripheral dystrophic calcification". They also mentioned gross dilation of the pancreatic duct and differential diagnosis IPMT vs mucinous cystadenocarcinoma.

At this point it seemed that I was being told I had a cancerous tumour, but also advised that because it was so close to the major vein. Pretty devastating, and a lot to take in.

However I was referred to a specialist and had an endoscopy and fine needle, and another CT. He tells me that the latest CT and endoscopy show less inflammation and he proposes a whipple (PPPD) surgery. The biopsy he says was inconclusive. I know the surgery is a huge undertaking but something rather than nothing which is what seemed to be the case initially.

I am an optimistic realist and so have taken on board everything, and come to terms with the situation, and been busy organising practical matters. The emotional side is a different matter, I live alone and have only an elderly father who doesn't love locally so I am just 'getting on with it', though friends are very kind. However everyone always wants to know detail and I don't have anything more than I have already said.

One other query/point that relates to this is whether this is still (or whether it ever was) cancer?

My work have been very good about my time off, but thought maybe I had inoperable cancer, now there is an operation available they want to know what that means in terms of my employment and possible return.

I have a critical illness form which asks me to tick either Cancer - excluding less advanced cases; Cancer - second and subsequent or Terminal illness, do any apply?

Hopefully future posts will be shorter, but I am just trying to get my head round everything and still deal with the day to day! Any help gratefully received.

[Veema]

Sorry you've had this diagnosis, but great that they think they can do the whipple. From a work point of view, it is major surgery which takes a good few weeks to get over...my husband did really well after his whipple, but it was 6-8 weeks before he even considered going back to work...I suppose it depends on what you do.

No idea what you tick on the form as none of those seem to fit...but the first one is the most appropriate I think.

Good luck with the op...keep us posted.

Vx

[Didge]

Hi there. Great that they can operate but as far as the form is concerned you need to tell your work that you won't know until you get the report after the op. Good luck for a speedy recovery and glad you have some good friends on hand. Plus us of course! X

[Dandygal76]

Hello Smileymum

I struggle sometimes in how to approach these things so will be forthright and I hope you do not mind:

- often you will get a negative biopsy with this cancer - it is difficult to reach (dad had a negative)
- For some reason the NHS caveat on many occasions there is a 1% chance it is not cancer. This was dismissed by second opinions (privately) but (rightly or wrongly) they are covering themselves.
- If they are offering whipples it supports my second point - or they would be going for another biopsy.

You need to keep your posts as long as you need them and whenever you need them, we all have no problem with that.

My dad suffered a lot hoping he would be the 1%. I am a financial gal and decisions need to be made based on 99%. Statistically, if you was investing £1000 of your money, you would go with the 99% advice. It is so easy in distress to hold onto the 1% (whether true or not) and not be logical.

Please update us and come back - you have a great chance of a positive outcome and people (like yourself) need to hear those stories.

xxx

[Dandygal76]

Sorry - also, you need to engage with adult social care at your local authority. You are entitled to support around your recovery. Re employment matters - it is not unusual for work to ask this and it is, from experience (working in difficult employment matters.. disciplinary etc where people often take sickness absence) that you need to engage with them re a back to work date. I am lucky I have 6 months full sick pay and it is hard to advise without more context. The best place you can get advice re employment matter around this is either cancer research or ACAS. If your employer is not compliant with ACAS then they will have difficulties.

Either of the suggested routes may not give you the answers you want - but what you need now is steadfast proper plan-able answers. x

[Wife&Mum]

Hi Smiley

Welcome to the forum but I'm so sorry that you find yourself here. You've already had lots of good advice above. The main thing I can add at this point is a suggestion for you to get in touch with the wonderful helpline here at PCUK. I'm sure they will be able to help with those diagnostic terms and with recovery times for the Whipple.

As Veema says, it really is great that you've been offered a Whipple as even if it is cancer, that op can and does cure people of the disease. Also you should be very encouraged that your drs haven't mentioned adenocarcinoma as that tends to be the nastiest and least treatable form of pancreatic cancer. Sadly it's also the most common by far.

I wish you much strength and good fortune as you face this challenge. As the others have said, post here whenever and whatever, there are always people here happy to offer support of the emotional and practical kind.

Oh, and my hubby had a Whipple 17 months ago (for the adenocarcinoma form of PC) and has a pretty good quality of life. He also had a load of chemo and radiotherapy thrown at him, which hopefully you won't need.

W&M xx

[AnneD]

Hello Smileymum,
If your mass is an IPMN it may well be benign but as was said above you won't know until the post-operative histology report. I had a Whipple for IPMN which turned out to have a central focus of adenocarcinoma in 2010. In 2009 I had had a distal pancreatectomy for the same reason. The surgery was curative and I didn't need chemotherapy and there has been no recurrence. Of course it takes a while to recover but in my case I felt such relief that the surgery had taken away any fear of cancer that I had no regrets.
Best wishes,
Anne

[smileymum]

Hello everyone, one week on since I submitted my first post and I was so pleased to hear back from you all.

I feel like I have a new group of friends already during this challenging time. I really appreciate your posts, comments, words of support and own experiences.

Caught up with my GP on Friday, not a good experience. Her only comments were that she had never met anyone who had a Whipple (fair enough I thought as I know it isn't something a GP comes across everyday), but then she didn't know about the enzymes, and said I would only get prescription exemption if I became diabetic after the op, and that I would probably have diarroah , really!

Thank you all again, I have a CT on the twenty fourth of this month to make sure all is looking ok for the op to go ahead on the third of August. Take care, Karen

[Marmalade]

Hi Smileymum,

I have a daughter who is a doctor and am generally supportive of doctors but given your diagnosis, treatment options and the ongoing need for support I really do think it would be better to change GP now while you are comparatively well. It need not be a confrontational or unpleasant thing to do. You don't have to tell your current GP that you want to change. You don't have to tell the new GP surgery why you want to change, either. You'll need to fill in a registration form at your new surgery. A request will then be made to your current GP for your medical records to be transferred to the new GP surgery. Alternatively you can ask to see the practice manager at your current surgery and ask to be put on a list of someone with more experience of upper GI issues. Life is difficult enough without having an inexperienced GP.

Hope all goes well for the op

Marmalade xx

[smileymum]

So, for today's update - just when you think you know what direction you are headed along comes another curve ball.

My original diagnosis of an inoperable tumour in the head of my pancreas was a bit of a blow. Two Endoscopic procedures and biopsies being inconclusive for Cancer still leave me hanging. Work and Insurance and GP let alone family and friends want to know if I am terminally ill/have cancer - so do I.

The specialist had proposed Whipple surgery for next week, and I have been preparing myself and my children for that. However I have had a call this afternoon, yesterday's CT shows a blood clot in my major vein. Surgery is now not an option. Anticoagulation injectons for the next 3 months he says.

Bit all over the place right now!

Positive is that the children broke up from school for the summer holidays and I managed to get presents for the teachers and won't be in hospital/recovering from surgery in August.

Whatever next?!

[Florence]

Hi three years ago it was found, as an incidental finding, that I had a tumor on my pancreas. Like you, two biopsies and each one I was told that they could not be certain if the tumor was malignant. I was advised that I needed surgery. The tumor was on the body of my pancreas so I had to have the tail and body removed. I still have the head and so far so good that I am not diabetic. I was lucky to have had a good experience with the NHS and a great consultant. Although my surgery did go wrong and I ended up having to have a blood transfusion I see it that the surgeon saved my life not once but twice I did a lot of reading on pancreatic cancer, tumors and so on after my diagnosis and read lots of positive stories about the whipple procedure and successful outcomes. I have no children and I was 42 when I had my surgery, lived on my own and worried so much about finances, getting through it all etc... I am still struggling today financially as I had to take out loans to survive as my employer at the time of the surgery would not pay sick pay, even though I had worked for them for 7 years at the time (needless to say as soon as I could get another job I left) but still struggle financially as I got into so much debt. I remember feeling so frustrated at the time that I could not get a full diagnoses, every time I had an appointment I was told it was 50/50. My point is mentally I was a wreck but I got through it and so will you. Stay strong xxx

[Parker]

Hi
I am still to be diagnosed as well. I had a ct and MRI which showed a dillated pancreatic duct and what they assumed might be a stone in the head . I had an EUS and came round from heavy sedation to be told it's not a stone, we have taken a biopsy. Unfortunately I bleed and they could only do one needle pass at it was inconclusive.
So I am now at a London hospital and had another ct and MRI which showed same really dillated duct . Now having a second EUS next week .
It's frustrating not knowing , and I agree that everyone else wants to know as well and I have nothing I can tell them either way.
I hope you can have your surgery soon .

[Dandygal76]

Parker - you are in the best place. At least you are not an outpatient which really takes a long time. I would ask for a PET scan - or do it privately (if you can afford it). I have found all the London hospitals quite linked to be honest with Harley Street (Bit of a boys club going on there). It would be easy to accelerate on a private basis (if you compare providers) and no problem to the hospitals concerned as the main consultants naturally work privately in Harley street as well - that is not a dig to them all - I work both public and private sector.

PCUK will clarify / delete as appropriate I am sure.

I hope you get a diagnosis asap.

Best wishes

DG

[Sammi12]

Hi Smileymum

Sorry to hear about what is going on. I am in a similar position, 34 just had my first baby (now only 4 weeks old). I was admitted to hospital with really bad abdominal/back pain similar to your description. They thought it was gallstones to begin with and I also had acute pancreatitis. I was in for 4 weeks, had an ERCP and a stent put in. I was induced to bring baby early as MRI showed a 'mass' at the head of the pancreas. I then had a CT scan which confirmed this followed by an endoscopy- but the endoscopy didnt find a 'discreet mass' - they said the mass seen on the CT scan could have been a shadow! They were able to take a biopsey though - which was inconclusive - they cant say whether cancer or not! They did confirm finding a number of cells which were reactive and obstructive. I have had to have more blood tests, am booked in for another CT scan and will have to have another endoscopy/ biopsey.

It is frustrating and mentally draining with a new baby - like you people want to know if I have cancer. I want to know if I have cancer - the thought of not being here to see my little boy grow up is heart breaking. My consultant says cancer doesnt 'sit quite right' with him - and as much as I try to hold on to this - this is a challenge.

I am scared that doing nothing (repeating tests already done) will just come back inconclusive as previously and that during this time things may get worse!

You sound like your managing well considering - I will keep everything crossed for you. Xx

[Sammi12]

I only just realised the date on this - I am not sure if you are still on here. But wherever you are, I hope you got the answers you wanted, I hope your well. X