A forum for family, friends and carers of pancreatic cancer patients

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Dollysdaughter
Posts: 64
Joined: Sat Jan 25, 2014 4:14 pm

What can I do?

Postby Dollysdaughter » Mon Jan 27, 2014 4:35 pm

My lovely mum was diagnosed with PC just before Christmas and spent a couple of weeks in hospital having a stent put in and recovering from that. On Friday we saw the consultant who said that whilst the tumour was potentially operable she would not be physically for enough for an operation so the next step is to talk to someone about chemo (radiotherapy probably not an option as she had it previously for a different tumour)
Whilst I don't doubt the consultant it doesn't feel right to just accept his decision and "go along" with everything.
I have read through the various conversations on here and everybody sounds so informed, supportive and helpful I really just wanted to see if anybody is in a similar situation but further along the way and perhaps can help me with what to do next?
I have spent a lot of time on the internet as you can imagine and discovered a few potentially helpful things but what to do and where to start?
The nanoknife for example . Looks like it could be successful but can anybody advise me on who it is suitable for? Also taking black cumin seed oil, any good?
My mum will do and try anything, we are still quite shocked I think and would just really appreciate any guidance on anything we can do to stop feeling so helpless. Thankyou

PCUK Nurse Dianne
Posts: 286
Joined: Tue Aug 14, 2012 3:29 pm

Re: What can I do?

Postby PCUK Nurse Dianne » Mon Jan 27, 2014 5:00 pm

Hi Dollysdaughter,

Thank you for joining the forum and welcome. I am sure you will find this a very supportive place, this has a great 'forum family' who will give you their perspectives and stories and some solutions they have found.

If you wish to email us on the support line (support@pancreaticcancer.org.uk) or phone (020 3535 7099) either Jeni or myself would be more than happy to help you out with some information and be able to guide you in a direction that may help you with some answers. Please do feel free to be in contact.

Kind regards,

Dianne
Specialist Pancreatic Cancer nurse
Support Team

Dollysdaughter
Posts: 64
Joined: Sat Jan 25, 2014 4:14 pm

Re: What can I do?

Postby Dollysdaughter » Mon Jan 27, 2014 5:05 pm

Thanks Dianne, much appreciated x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: What can I do?

Postby Cathy » Mon Jan 27, 2014 5:57 pm

Hi Dollysdaughter,

Welcome to the forum.

There are a few people on this forum who I am sure can offer some good advice re nanoknife having had the procedure themselves recently. I am sure they will get back to you with some very good advice.

Cathy xx

Dollysdaughter
Posts: 64
Joined: Sat Jan 25, 2014 4:14 pm

Re: What can I do?

Postby Dollysdaughter » Mon Jan 27, 2014 6:12 pm

Thanks Cathy, it's really reassuring to be part of this group xx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: What can I do?

Postby J_T » Mon Jan 27, 2014 6:21 pm

Oh I replied earlier but my post has disappeared!

I said welcome :) and your mum being potentially operable is a good thing. In your shoes I think I would seek a second opinion especially you are already wondering if you should just go along with things.

Some of the treatments being had by people mentioned on this forum are patient/carer driven so you won't be alone in pushing for the treatments your mum deserves.

There are more informed people re Nanoknife but I believe you have to have a copy of your mum's scan etc to forward to the Hospital and they will let you know your mum is a suitable candidate.

Good luck with your mum's treatments.

Julia x

Dollysdaughter
Posts: 64
Joined: Sat Jan 25, 2014 4:14 pm

Re: What can I do?

Postby Dollysdaughter » Mon Jan 27, 2014 9:17 pm

Thankyou Julia, I am slowly working my way through everything and support like this is so comforting x

phatwa
Posts: 2
Joined: Thu Jan 16, 2014 7:07 pm

Re: What can I do?

Postby phatwa » Tue Jan 28, 2014 8:41 am

Hi dolly, if I can give you one piece of advise, it's do not wait. Look into it now. My father was in the same position but had 2 failed stents and then it progressed so quickly. Good luck.

Dollysdaughter
Posts: 64
Joined: Sat Jan 25, 2014 4:14 pm

Re: What can I do?

Postby Dollysdaughter » Tue Jan 28, 2014 9:32 pm

Thanks, everything really does feel like it's going very slowly and that valuable time is being wasted. It's just difficult to know what to do first and where to go next x

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: What can I do?

Postby marie souter » Thu Jan 30, 2014 5:20 am

Hi Honey and welcome to the forum,

Oh .. potentially operable ... music to my ears ... my advice on the rest is .. pester pester pester .. don;t let the grass grow...you have a voice use it and use it often..ask questions no matter how trivial you think they are ... question EVERYTHING ... and then question again ... my mom felt much better after the stent for quite a while .. questran sachets helped with the itching until everything calmed down properly ... has your mom been appointed her own macmillan nurse yet? and have you been advised of dietry needs CREON tablets to replace the lost enzymes to allow your mom to keep her weight steady?
Am sure you're gonna get inundated with advice on here .. fingers crossed for the op..

love and hugz
Marie

Dollysdaughter
Posts: 64
Joined: Sat Jan 25, 2014 4:14 pm

Re: What can I do?

Postby Dollysdaughter » Thu Jan 30, 2014 1:47 pm

Thanks Marie, everybody is so helpful and supportive despite their own personal battles and grief. Yes, she is knocking back the creons! Although she has lost a lot if weight she is eating relatively well .
Unfortunately the consultant said that mum didn't meet the required levels of fitness for surgery so wouldn't do it. Is this something we should question do you think? He said her heart and lungs may not be strong enough for recovery from the operation. I don't want to give her unreal hope but maybe we should get a second opinion?
I don't want to "alienate" her current medical team but don't want to let potential hope slip by either.
Thanks again and any advice is so very welcome,
Sara xx

PCUK Nurse Dianne
Posts: 286
Joined: Tue Aug 14, 2012 3:29 pm

Re: What can I do?

Postby PCUK Nurse Dianne » Thu Jan 30, 2014 2:30 pm

Hi Sara,

I am a bit concerned about your post that the consultant suggests your mother may not be fit enough for surgery. Surgery is the gold standard, and should be offered to everyone. One should not make this assumption that she may not be fit enough. It would depend on age (although there should not be an ageist approach to this standard care) and also her fitness levels, ie is she self caring at home, able to attend to her own daily hygiene needs etc. In any case, it would be standard for her to undergo a 'pre-operative assessment' by one of the Anaesthetic Consultants within the trust where surgery would potentially take place. I can talk to you more about this. Please feel free to call if you wish (020 3535 7099) if you wish to talk about this, or email our support line. I would be challenging this decision or asking if you mother could be assessed appropriately. What basis does the consultant make that judgement on? And how does your mother feel about that, was she asked what she thought about surgery as an option.

Dianne
Specialist Pancreatic Cancer Nurse
Support team

Dollysdaughter
Posts: 64
Joined: Sat Jan 25, 2014 4:14 pm

Re: What can I do?

Postby Dollysdaughter » Thu Jan 30, 2014 5:32 pm

Hi Dianne, she did have this pre operative assessment which was done on a bike at various speeds with breathing mask. The surgeon said that both he and the anaesthetist thought she wasn't fit enough to withstand the recovery process. She is, however, generally fairly fit (she is 79) She lives alone and is more than capable of taking care of herself. Should I be questioning their decision? He didn't ask what she thought, he seemed like, and am sure he is, a great consultant but perhaps We should be questioning his decision? Thanks for your help

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: What can I do?

Postby marie souter » Fri Jan 31, 2014 2:34 pm

HI Honey,

Am flabberghasted at this one .. to be honest .. whats the alternative to the op?
I would want to talk to them to ask what they based their opinion on and why they decided to say no? Is that not your moms choice to decide whether or not she wants to take the risk?

I think it would be in your interest to ring Diane and discuss it further for advice...I don;t think you questioning the oncology tea should alienate them..how you approach them is key of course and if you go with an informed objective I am sure they will be ready and willing to discuss all with you...Never worry about putting your point forward they are there to answer your questions no matter how trivial or repetitive..

hugz
Marie
xx

Dollysdaughter
Posts: 64
Joined: Sat Jan 25, 2014 4:14 pm

Re: What can I do?

Postby Dollysdaughter » Fri Jan 31, 2014 4:41 pm

Thanks Marie, I will call Dianne, and you have helped to give me a but more confidence to PUSH for what is in mums best interest,
Sara xx