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Kevin
Posts: 11
Joined: Fri Apr 01, 2016 12:20 pm

Forums - Support and Shared Experience not medical advice

Postby Kevin » Fri May 06, 2016 10:13 am

I write this in support of the comments made by the PCUK Support Team on 29th April - Pancreatic Cancer UK Discussion Forum and Support Line Forum - regarding forum members posting 'medical advice'.
http://forum.pancreaticcancer.org.uk/vi ... f=8&t=1758

I believe that these discussion boards are a great source of support for many people, myself included. I fully agree with the intention that they be used for emotional support and to share experience.

By way of background, I was diagnosed with PC in April 2015 and had Whipple in May followed by chemo. I have just had a CT scan and a review with my Consultant Surgeon and Oncologist and told that I have a recurrence in the same location as the original tumour. I will have a PET Scan next week to see if it has spread with a view to starting Folfirinox the following week.

I read the forum most days, but would currently be very reluctant to post anything new as I have noticed one or two fellow members who appear to dominate the responses and try to give the impression that they are providing advice on treatments based on a level of medical qualification which they clearly don't have. In some cases even to the extent of disputing the sound and balanced advice given by the excellent support nurses.

I am very fortunate to have an excellent medical team at a leading university hospital looking after me and providing good advice. It is also my nature (and background) to research matters. However, whilst I will happily share my own experience with others, I would not dream of interpreting medical research papers and providing advice on what course of treatment others should embark on. I sense that some users of the forum are understandably in very vulnerable situations and forum members posting 'authoritative' responses to their questions is unfair and a risk.

Patients and their families should feel comfortable to share their situations, seek support and learn of others experience. If the behavior of one or two prevents this then the value of the forum will be undermined. Its good to know that the Support Team has also identified this issue and reiterated their guidance.

These discussion boards are a wonderful source of support and shared experience. Please let us maintain this and as the vast majority of members already do, direct others to the excellent, qualified and experienced PCUK support nurses for advice regarding specific conditions and treatments.

PCUK Nurse Jeni
Posts: 1014
Joined: Mon Jun 14, 2010 1:30 pm

Re: Forums - Support and Shared Experience not medical advic

Postby PCUK Nurse Jeni » Fri May 06, 2016 10:42 am

Dear Kevin,

Thank you so much for sharing your post and for your, clearly, very balanced views on the use and value of the forum. It is very encouraging to hear that you find the forums a good support mechanism, and that you read the threads frequently.

I am really sorry to hear that you have recurrence of the disease, Kevin. Not what you wanted to hear, I am sure, but you seem to have a plan in place, and I hope that the PET scan is favourable next week. Folfirinox is having some great results since it has been introduced for pancreatic cancer, and although not an easy treatment, it is providing benefit to many patients.

I am delighted to hear that you have a good care team, and you seem to have good relationships with them - it makes such a difference.

Please don't feel reluctant to post Kevin - we do monitor the forums twice a day most of the time - there may be the odd occasion where this is not possible, but generally, we are able to do this. So, hopefully, would be able to identify anything which might not be beneficial.

Kevin, I wish you the very best for your upcoming treatment, and thank you once again for your post.

Kind regards,
Jeni.
Pancreatic Cancer Specialist nurse,
Support Team.

Proud Wife
Posts: 729
Joined: Sun Jan 17, 2016 9:28 am

Re: Forums - Support and Shared Experience not medical advic

Postby Proud Wife » Fri May 06, 2016 11:19 am

Hello Kevin

I too am very sorry to hear that you've had a recurrence. The best of luck with your PET scan.

Speaking as someone who is in dire need of whatever information/advice/guidance I can get from this forum, I really hope you don't mind me saying but personally and not wanting to contradict Jeni in any shape or form as every one of the PC specialist nurses here are absolutely brilliant and I would be totally lost without them, I'm only a little concerned that the people to whom you may refer and I am not even thinking who that could be, may be discouraged from posting on here, that's all.

Every single person on here is well meaning. You have to have gone through this vile disease and come out the other (sad) end to be able to help others like myself and my husband who is currently battling progressive disease. By help, I mean understand what that person is going through. Again, I can only speak from personal opinion but I don't believe anyone here is trying to pretend to be something which they know they are not, moreover, just wishing to share their experiences and perhaps extensive research that others like myself, are just not up to doing as I suffer from brain fuzz!!

Having said all that, yes of course I agree that perhaps someone could take the odd comment here or there as gospel when it's not but as Jeni says, the site is always monitored and if anything posted is unnacceptable, it can always be removed.

I too would urge you not to be reluctant to post. They say knowledge is wealth and even if you don't want or need any specific advice or information, one thing is for sure, we all care and that's what's important when it's such a hard battle to fight. If there's any way we can support you, then I'm sure I speak for everyone by saying we'd very much like to.

I sincerely hope I've not offended you by my comments, I'd just hate for anyone to feel that they shouldnt say anything for fear of being reprimanded when their well meaning advice is only intended to help.

all the best
PW

sandraW
Posts: 1032
Joined: Thu Oct 31, 2013 5:38 pm

Re: Forums - Support and Shared Experience not medical advic

Postby sandraW » Fri May 06, 2016 12:06 pm

Hi Kevin,
Welcome to the forum, I do hope you will feel able to post if we can help or support you in any way possible on your journey with this truly dreadful disease.
I found the forum invaluable, when my husband was on his PC journey, and I while do agree with PW that the information is given with the best possible motives, I also understand where you are coming from, sometimes things do get just a little ott.
I hope the Folfirinox does its job, its a hard regime, my husband managed really well and had a good quality of life on the whole. Did you have chemo after your whipple? and how did you cope with that? look forward to hearing from you, take care and all the best for your PET scan take care sandrax

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Forums - Support and Shared Experience not medical advic

Postby Wife&Mum » Fri May 06, 2016 3:58 pm

Dear Kevin

Your post has set me wondering if I'm one of the frequent posters that you're referring to, as I tend to support my comments by linking to research papers. In my defence, old habits die hard...I worked as an information professional at one of the top 5 UK universities for over 30 years. If I read things on the Forum that resonate with papers that I've seen, and I think that they might help or shed light on an issue, then I have been linking to the reference.

I take your point that I'm not a medical expert and cannot post with any authority, but I can assure you that I only link to authoritative sources such as scholarly journals and recognised charities.

My motives for posting have always been entirely altruistic, but I certainly don't want to cause confusion or step on the toes of the excellent PC UK nurses. So if others on the Forum - especially the PC UK nurses - would prefer that I cease posting in my usual way I will happily do so.

With my very best wishes
W&M