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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Joined: Wed Jul 17, 2013 12:45 am

Steve - SLewis7313 - where are you?

Postby tummywoes » Tue Jul 23, 2013 4:22 pm

I am not in the UK, however I began to follow your inspiring story and am curious how you are
doing now? I am at the very beginning of the journey and find so much hope in your posts.
I am currently waiting for a biopsy and am scared to death My only hope is that maybe, just maybe it wont be cancer. Like so many here, I was so healthy before all this started, now I
am a mess, have lost too much weight, pain, etc. also very interested in the enzymes, I am taking Papaya now after each meal. Dr. said it was ok, but I wonder if I could or should be taking something else, maybe a different kind? They certainly wont hurt me and would like to begin anything that will help early on. Hope to hear from you soon.

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Joined: Sat Dec 08, 2012 8:48 pm

Re: Steve - SLewis7313 - where are you?

Postby Slewis7313 » Tue Jul 23, 2013 5:42 pm

I'm still here and doing pretty well! I have had 4 months of chemo followed by a CT scan which confirmed the tumour had not shrunk, but equally had not grown or spread which is considered as a good result! I was then given 6 weeks of radiotherapy and am now on a treatment gap until the next CT scan on 8th August. We hope that the radiotherapy would have shrunk the tumour and possibly made it operable, though the main problem is that it is entangled in major blood vessels making surgery difficult. I (and my family) are very upbeat about things even though the outcome remains unknown, but I (like others) know how really scary the whole thing can be in the early days when you are trying to come to terms with the illness and trying to understand exactly what it is and what can be done.

You say you are awaiting a biopsy... What have they discovered to date? I assume you have had a CT and/or ultrasound to trigger the biopsy. Wherever you are in the process, please don't try and second guess what it might be as this can be counter-productive and compound any anxiety you may be feeling. I would suggest you share your story to date with the support nurses on this forum who are absolutely amazing, supportive and have a wealth of factual knowledge on the illness. You can contact them by phone on Monday - Friday and I guarantee you will not regret it!

I (and the rest of the forum members) will of course be available to help and support you in any way we can and this chat should continue in parallel with any discussions you may wish to have with the nurses. It really does help to share your concerns and I hope this sharing will make the whole experience less scary (it certainly did for me in the early stages).

Speak to you soon

Take care


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Re: Steve - SLewis7313 - where are you?

Postby J_T » Tue Jul 23, 2013 6:14 pm

Hello tummywoes and welcome to the forum.

Sorry to hear you are feeling low and in pain, I would urge you to seek help from your practioner in regard to that, you should not have to be in pain.

I echo what Steve says, if you are not in the UK you can email the nurses here support@pancreaticcancer.org.uk, as Steve says, they are brilliant and really know what they are talking about.

Here is the link that will tell you about the pancreatic enzymes http://www.pancreaticcancer.org.uk/info ... ic-enzymes


Posts: 5
Joined: Wed Jul 17, 2013 12:45 am

Re: Steve - SLewis7313 - where are you?

Postby tummywoes » Wed Jul 24, 2013 12:57 am

thank you for your quick reply. I do appreciate all the help and advice.
It has been along 6 months since doctor told me I had gastritis, then IBS, then spastic colon.
I have had a colonoscopy, a End, which were both ok. then a CT was ordered, which was inconclusive.....Dr. then decided I should have a biopsy. I have waited now almost 2 1/2 weeks
for them to schedule with no luck. FAST FORWARD TO TODAY.....I called the office again to see
where we were as far as the biopsy, I was told by the nurse that the radiology doctor had sent
a fax saying that he wants to do either another CT scan with the dye, or a Petscan.
I am waiting now for my doctor to call me and discuss this outcome. all of these tests scare
the hell out of me, but would rather have a CT or Pet than a biopsy....I have read where the
Petscan can determine what kind of tumor, cyst, and if it is cancer or not. I will take your
advice and email the nurses. If you have had a Petscan could you let me know what it is like?
Best to you1 congrats on the new baby royal ;)