Newbie Diagnosis Rollercoaster

[Minstrel1]

Hi all

Here goes with my first post! First felt unwell in January. Had a colonoscopy in February and given all clear. GP.had also referred me for a ultrasound as she suspected gallstones. Had ultrasound at end of March and they found a 3cm indeterminable mass in the head of my pancreas. Was called to GP surgery next day to be told the news. Decided to go private after GP secretary sent my referral to lower GI rather than upper GI by mistake! Was seen by a surgeon who decided the next step was to have a CT scan of chest, abdomen and pelvis. Radiographer told me the mass was not in my pancreas and I breathed a massive sigh of relief. Saw consultant again who said from the Ct report he now suspected either a stromal or a neuroendocrine tumour but said it was good news not to be in the pancreas. He told me the next step would be to have a endoscopic ultrasound and biopsy. Had this on 30th April and the Doctor who did the procedure told me I have got a mucinous cyst in the head of my pancreas which is 41mm by 21mm. Saw my surgeon last week, who told me they were still waiting for my CEA results, but results so far showed that it is not a inflammatory cyst. It is a multiseptated lesion with some lymph present and arises from the head of my pancreas in to my abdomen. Was supposed to see surgeon again yesterday but results still not back. He has advised whipple surgery due to size of lesion but wants to wait for CEA results. The waiting is driving me to distraction as still don't feel well. How long do CEA results usually take? does anyone know?

[J_T]

Sorry I can't answer your question, just wanted to say hi and welcome.

Sounds like this has been a very up and down time for you and hope you get some conclusive results very soon.

Do keep posting and let us know what's happening. You will get plenty of advice and support here

Julia

[Didge]

Goodness, you certainly have been on a rollercoaster! I don't know how long the CEA test takes but I suppose the type of lesion you have may be benign or slow-growing which is why they want to wait before deciding whether to do surgery. However, if you feel unwell it looks like the Whipple would be a good idea anyway. Surgery for pancreatic cancer is done at one of the specialist hospitals on this site but many of these surgeons also do private work so make sure you are happy with the surgeon before going ahead. The nurses on this site may be better able to advise you so do give them a ring after the weekend if you would like to talk through your questions. Good luck and let us know how you get on.

Didge

[Sueoliver]

Hi I can't answer your question about results but just wanted to say there are many knowledgable people on here so please keep posting. Hopefully you will get your answers soon and beable to decide the best way forward.

Stay strong,

Sue x

[MSH]

I get my CA19-9 result within 24 hours, I expect the CEA would be similar. That said I suspect that waiting for this result is code for reviewing pathology, consulting with colleagues and generally making sure that surgery is the right option. Whipple's is major surgery and needs careful consideration.

[Minstrel1]

Still waiting. Surgeon is away this week, but has said me he will ring me as soon as he gets the results through. His secretary told me that my case was discussed in the MDT meeting last Friday, Apparently the CEA was sent to Charing Cross which is nowhere near where I live. I think to some extent the delay comes from being private but having to use the NHS for the EUS. Thought going private would be quicker!!!! As I work in the NHS myself as a clinician and know how administrative systems can delay things. The waiting to know what is happening is just so frustrating, as the CEA will only tell them so much and I think at the moment the uncertainty is the hardest thing to cope with. Sorry for the whinge and thanks for your responses. Lisa

[Didge]

Hope you hear soon but now it's Bank Holiday so assume you'll have to wait a little longer. Let's us know how you get on. Didge

[Minstrel1]

Hi again. Heard from surgeon yesterday. CEA result low and not what he was expecting. He was keen to point out that this does not mean it is not a MCN. The Dr who did the EUS was also convinced it is a MCN. To add more confusion some of the MDT are not convinced that the 'whatever' is actually in the pancreas. So back to no mans land again. Surgeon said options are to either repeat tests (EUS and/or CT) or to proceed with surgery as lesion over 4cm. In fairness he also said tests may well just come back the same again. I think if I wasn't feeling so rubbish most of the time I might consider doing the tests again. However my day to day functioning is affected and I have been unable to work since mid April and that is getting me down. My digestive system is upset most of the time and I have upper back pain which prevents me from sitting upright (without full back support or standing still for long (back X-ray normal). I also feel light headed, have an unquenchable thirst, headache and feel exhausted most days. I accept that these symptoms may or may not be related to the lesion, but in my head the only was to find out is to remove the lesion and hope the symptoms go away.

I am meeting with surgeon again on Thursday to discuss further. From what I can ascertain the ultrasounds indicate the lesion arises from the pancreas and CT indicates it is outside. I think it must just be in an awkward position to cause the differing opinions. If I go ahead with surgery hopefully it will be outside and they then won't have to do the whipple. I have to be prepared for the worst and hope for the best. I am still open to discussing whether repeated tests will be worthwhile, but with such split opinions within MDT I don't think I will be happy to leave it where it is in the long term. Thanks for reading this Lisa

[Minstrel1]

Bin 2 see surgeon this evening. He wants to repeat the EUS. He said he and a radiographer have been looking at my scans all afternoon. The radiographer thinks there is a strong possibility that the 'whatever' is outside of pancreas. I am just so confused and just want to get it sorted. The EUS will probably take 10 days to be done and then it is all that waiting for results again. Surgeon's main emphasis is he doesn't want to put me thru unnecessary surgery if it turns out to be benign. Back to the waiting game again!!!

[Didge]

Frankly I'd have the surgery. Whatever it is you're feeling rotten and if it is something nasty the sooner it's out the better! Make sure you get a surgeon at one of the specialist hospitals on this site.

[Minstrel1]

I did have a long conversation with the surgeon last night. Normally it is 5 minutes. I explained my frustration and told him how rubbish I am feeling and how this is impacting on my level of functioning. However he is still very keen to repeat the EUS. He did explain that what they can see on the scans is that the 'whatever' is at the back of the head of my pancreas. It is either arising from the head or just outside of it. It is situated between 2 big blood vessels and he said even exploratory surgery carries significant risks. He was certainly left in no doubt about how I am feeling and my reluctance to have a further EUS ( because it may just come back with the same results). He said that this time they will be looking for more specific things and that if the EUS results came back the same then the option will still be there as to whether to proceed with surgery. Going off the point a bit I did tell him that we had a similar scenario with my son last year where he suddenly developed a large egg shaped lump on his neck (6 inch diameter) and health care professionals were divided as to whether it was cancer or not. Fortunately for him it turned out to be a 2nd branchial cyst - but we did not know that until after it was removed! What I was trying to get across was that sometimes u don't know what something is (even with all the most up to date technology and expertise) until after it is taken out.

I am really fed up with it all and just want to have a sense of being able to move forward and get back on with my normal life and work. I know there are lots of others far worse off than me, but it is the sense of not being able to battle when u don't know what u r up against that is the hardest thing to deal with. I'll stop running on now but it does help having somewhere to vent my frustrations. Thanks for reading my 'vent' Lisa

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[Didge]

My partner had a laparoscopy before his big op to assess it. They did not take a biopsy as they were planning surgery anyway but I wonder if that would be an option. If it is pc any delay can be deadly. Good luck and keep posting!

[Minstrel1]

Due to 'its' position laparoscopy is not an option. It open surgery with lots of moving stuff around or nothing unfortunately. Lisa x

[Didge]

I am not talking about laparoscopic surgery which is sometimes used to take out tumours in the pancreas - I'm talking about a 'look see' procedure where they just do that - have a look! Nothing like actually seeing what's inside for the surgeon to make the final decision about operating. The only thing I can suggest is, if you're not already at one of the specialist hospitals, to ask to be referred to your nearest for a second opinion. Good luck, Lisa x

[Minstrel1]

The endoscopic ultrasound is where they put a endoscope down ur throat with an ultrasound an a balloon attached when they reach the duodenum they inflate the balloon which enables them to take a close look and do a fine needle aspiration of the tumour. I have to have this procedure at the specialist centre as it is specialised equipment and a lot of hospitals don't have this equipment.From what the surgeon has said this is the only way they can access the tumour due to its position. My surgeon works as part of the team at the specialist centre. I am seeing him privately but my case is discussed at the specialist centre MDT. If I go ahead with surgery the MDT will decide whether I can have the surgery at the private hospital or whether it needs to be done at the specialist centre. I think the procedure u r referring to is ERCP. Thank u for all ur support Lisa x

[Didge]

No, an ERCP is still down the throat into the stomach and beyond. a pre-op laparoscopy looks all around the abdominal cavity. I am glad you are at the specialist centre - they should have plenty of experience in knowing how to look after you - just keep asking questions when you need to! Lots of the specialist surgeons also do work at private hospitals - I suppose it just depends on how good the after care that you might need, is. Didge x

[Minstrel1]

Repeat EUS and biopsy is on Monday. Let's see what they come up with this time!!!!! Lisa x

[sandraW]

Hi Lisa,

Not been on the site for a while so have just been catching up on your posts, What a rollercoaster, lets hope that they can at least see more of the lesion and determine what it is. My husband was told he had a mucinous cyst on the tail of his pancreas, he waited 16 weeks for a CT scan after an ultrasound when they finally operated 2 weeks later, he had pancreatitis, a cyst and a cancerous tumour, which was 10 cms x 5 cms in total. Fingers crossed whatever it its the best possible outcome for you, take care sandrax

[Minstrel1]

Had the EUS yesterday. Dr who did the procedure said it is definitely in my pancreas and is cystic. He took a number of samples and it will take at least a week to come back. His impression is that it appears benign. There were 2 other Dr's in the room one of which introduced himself as a consultant ( before I was given sedation). So there were several pairs of eyes watching the procedure. The Dr who conducted the procedure advised me that the room may be a bit crowded when I wake up. I must admit I didn't notice! I am booked in to see the surgeon again a week on Thursday and the biopsy results should be back by then and hopefully I will finally know where I stand and will be able to make an informed choice about the next steps. Lisa x

[Minstrel1]

Hi guys

Getting myself in a bit of a tis. Due to see surgeon tomorrow to discuss the results of my 2nd EUS! Feeling physically better than I have done in months. My bowel has calmed down and I haven't had any bleeding from that end in 3 weeks. Still get an aching stomach, upper back pain, pain under ribs both left and right side and feel worn out most of the time, but nothing like the debilitating effect of frequent toilet visits. That's all positive but it is finally approaching decision time ( I think). My stress is that whatever the surgeon tells me tomorrow I do not know how much confidence I will have in the 'diagnosis' as I have been given so many potential ones (gIST, neuroendocrine, MCN, lymph nodes, cystic lymph nodes, cystic neoplasm, serous cyst, lymphagioma, or duplication cyst - so far). Together with mixed opinion as to whether it is inside or outside of my pancreas.This is by no means disrespecting the expertise of the medical team - it is just the darn thing is in a awkward place, I feel very confused as surgery to remove it is major but leaving it where it is will leave me with continuing anxiety as to whether they have got the diagnosis right and if left and it develops in to something nasty could I have missed the boat in terms of surgery! Also are my current symptoms related to the lesion or not? How effective will watch and wait be if CT and EUS cannot agree? I know I am very fortunate that I am not going through what a lot of others are and my heart goes out to them. But my fear is that I will make the wrong decision. Lisa x

[MSH]

I hope it's good news tomorrow.

[sandraW]

I too hope its the best news for you tomorrow, it must be very scary for you, trying to take onboard all the information, and try to make the right decision, I suppose all you can do is be guided by the health professionals, this disease is notoriously difficult to diagnose. thinking of you take care sandrax

[Didge]

Well even after tomorrow you can still have a little time to consider what you are told. Good news that you are feeling a little better. Would it be worth going to a different hospital for a second opinion?

[Minstrel1]

Saw surgeon last night. After a long discussion have decided to proceed with surgery. It still appears to be a cystic neoplasm arising from the head of my pancreas. Cytology results were negative for cancer. The size of the lesion together with my lack of confidence in monitoring ( when CT and EUS do not appear to agree) helped to swing the decision. Surgery is likely to happen at end of July- surgeons secretary will ring me next week to let me know the date. Surgeon is away at the beginning of the month - our planned family holiday is also then so it makes sense to still go unless he can book me in in the next 2 weeks. Although surgery is a big deal I somehow feel better now the decision has been made. Lisa x

[Didge]

Lisa, it is with something of relief that I read your decision even though surgery is not to be taken lightly! Hopefully it will prove to be benign in its entirety (it is not uncommon for tumours to have parts which are benign and parts which are malignant) but we have seen so often on this site people reassured that their condition is benign only for some time later being told it is malignant. I do hope you manage to get your holiday in. Please let us know how you get on. Didge xx