A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Newbie Diagnosis Rollercoaster

Postby Didge » Fri May 29, 2015 11:53 pm

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
Posts: 30
Joined: Thu May 14, 2015 4:56 pm

Re: Newbie Diagnosis Rollercoaster

Postby Minstrel1 » Sat Jun 06, 2015 4:03 pm

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

sandraW
Posts: 1038
Joined: Thu Oct 31, 2013 5:38 pm

Re: Newbie Diagnosis Rollercoaster

Postby sandraW » Tue Jun 09, 2015 1:58 pm

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
Posts: 30
Joined: Thu May 14, 2015 4:56 pm

Re: Newbie Diagnosis Rollercoaster

Postby Minstrel1 » Tue Jun 09, 2015 6:48 pm

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
Posts: 30
Joined: Thu May 14, 2015 4:56 pm

Re: Newbie Diagnosis Rollercoaster

Postby Minstrel1 » Wed Jun 17, 2015 11:18 am

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
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Newbie Diagnosis Rollercoaster

Postby MSH » Wed Jun 17, 2015 11:29 am

I hope it's good news tomorrow.

sandraW
Posts: 1038
Joined: Thu Oct 31, 2013 5:38 pm

Re: Newbie Diagnosis Rollercoaster

Postby sandraW » Wed Jun 17, 2015 12:01 pm

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
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Newbie Diagnosis Rollercoaster

Postby Didge » Wed Jun 17, 2015 2:20 pm

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
Posts: 30
Joined: Thu May 14, 2015 4:56 pm

Re: Newbie Diagnosis Rollercoaster

Postby Minstrel1 » Fri Jun 19, 2015 11:41 am

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
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Newbie Diagnosis Rollercoaster

Postby Didge » Fri Jun 19, 2015 12:35 pm

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

Minstrel1
Posts: 30
Joined: Thu May 14, 2015 4:56 pm

Re: Newbie Diagnosis Rollercoaster

Postby Minstrel1 » Fri Jun 19, 2015 2:38 pm

Thank you Didge. I must admit surgeon was really good last night explaining pros and cons. He also encouraged my husband to express his opinion which I thought was good as obviously the choices I make effect the whole family.

Go green sue
Posts: 38
Joined: Thu Jul 17, 2014 10:41 pm

Re: Newbie Diagnosis Rollercoaster

Postby Go green sue » Sat Jun 20, 2015 8:54 pm

Hi Lisa, I have just seen your post. I completely agree with you making the decision to have surgery.
They found a ipmn which is a cystic tumour in the body of my pancreas 3 years ago they monitored it yearly with MRI scans but I always had that seed of doubt in my mind. Last August it had grown so it was decided to remove my distal pancreas. The surgery wasn't as bad as expected - even though I developed an abscess .
I made a good recovery- although I still have some niggly problems and still being monitored. In fact I have just been on a cruise to Dubai free from worrying about having cancer.
I can understand how you feel but for the sake of a few uncomfortable weeks you will have peace of mind
Let us know how it goes
Love Sue H

Minstrel1
Posts: 30
Joined: Thu May 14, 2015 4:56 pm

Re: Newbie Diagnosis Rollercoaster

Postby Minstrel1 » Sun Jun 21, 2015 3:29 pm

Thank u Sue. Glad u r ok now. I feel this is the right choice for me also. Especially because of the diagnostic uncertainty. I had been feeling physically better over the last couple of weeks. However my stomach troubles have decided to make a return over the last few days. I must have tempted fate when I told the surgeon that this was much better! I am trying to help myself by getting fitter. I am swimming on a regular basis ( stomach usually settles early afternoon until I eat again in the evening). It does take a big effort to go and the first 5/10 minutes are really hard. But I usually manage to swim continuously for 35 minutes then have 5 minutes in the jacuzzi and then swim for a further 25 minutes. I'm lucky because pool is 10 minutes walk from my house and the water is warm. Lisa x

Minstrel1
Posts: 30
Joined: Thu May 14, 2015 4:56 pm

Re: Newbie Diagnosis Rollercoaster

Postby Minstrel1 » Tue Jun 30, 2015 4:38 pm

Just been told unofficially that my surgery will be 6th Augest by surgeons secretary. Apparently surgeon calling me will make it official. Away on holiday on Friday for 2 week so will try and put everything to the back of my mind until we get back. Lisa x

sandraW
Posts: 1038
Joined: Thu Oct 31, 2013 5:38 pm

Re: Newbie Diagnosis Rollercoaster

Postby sandraW » Tue Jun 30, 2015 7:42 pm

Hi Lisa,

That's the right thing to do, might not be so easy in practise though, but try your best and have a really lovely holiday, and come back all relaxed and ready. sandrax
Last edited by sandraW on Tue Jun 30, 2015 11:07 pm, edited 1 time in total.