Important to have medical support you trust

[suef]

I had a Whipple in Belgium 3 years ago and have recovered well. When I retired to the UK, I simply went to the nearest specialist centre and was assigned to a consultant. I never got on with him. The first letter he sent to my GP stated that I was taking too many Creon, but I was taking the precise number prescribed by my Belgian consultant. I have put up with him for over 2 years but finally lost my patience with his aloof and uncommunicative attitude. So I asked the support staff on this website to recommend a consultant in another location, not too far away. I had an appointment with him last week - and it was like moving from darkness into light. The new consultant is interested in me, asks questions, listens to the answers, lets me ask questions and takes time to answer them.

And he had read the letters from the previous consultant to my GP - and immediately, without prompting, told me that the advice about the Creon dosage was wrong.

So I strongly recommend anyone who is not getting on with their consultant to seek alternatives. PC is a dreadful illness and we need all the help we can get, including supportive medical staff.

Best wishes,

SueF

[Slewis7313]

The inconsistencies in support from different medical professionals is unbelivable Sue. It is hard enough to fight PC without finding yourself in this kind of situation where you also have to fight the Doctors. I luckilly have been treated extremely well from the outset, but know from this forum that your story is not uncommon. You are absolutely right, if the treatment is not up to scratch, we must all question what is happening and make decisions based on what we need (not what they are prepared to give us).

Take care

Steve

[PCUK Nurse Dianne]

Thanks Sue and Steve,

You are encouraging for others on the forum. You are correct, in that you are all entitled to seek alternative/independent advice, and you should not be made feel awkward for doing this. As Sue has mentioned, if this is something that you are concerned about and any repercussions that you feel it may have toward you, please feel free to speak to Jeni and I and we can guide you on how to go about this.

One way of looking at this is a little similar to shopping, if you are not happy with the first shop, you will go elsewhere until you find the product you are happy with. I apologise as we do not wish to diminish this disease at all, however highlighting that you are entitled to seek other opinions and you should be treated with fairness and respect. We are always happy to discuss this with you if you feel you are not being treated in the appropriate manner.

Dianne

Support Team

[InfoForMum]

Sue, I can't thank you enough for posting. Your experience and the kind and considered responses from Steve and Diane took a big weight off my shoulders as I'm just at the start of a similar journey with my Mum.

I'm a new poster here and Mum's not yet formally diagnosed. She's 68 and after years of indigestion written off to various causes, recent abdominal pain sickness and jaundice, we're going to see the consultant tomorrow for the post cat scan meeting. At initial consult post-ultrasound, he made it abundantly clear that her symptoms were pretty textbook and the "anomaly" on her ultrasound was more than likely cancer - little room for doubt, so without letting all the implications in just yet we're preparing.

If the news is as expected, and allowing time for whatever emotions will hit us, the next critical questions are obviously about possible treatment. Hoping it is operable. If it isn't, I then become the one responsible for finding out about the best palliative care and if it is I'm equally responsible for finding her the right surgeon and surgical advice. That's not me taking over in case you're worried, it's just how she's always liked our relationship to work. We're in Norfolk which has no specialist centre and I'm totally lost about how to judge between good, mediocre or bad centres/doctors

Her consultant is a hepato-gastrointestinal specialist (did I get that right?), but not an oncologist or surgeon. Unfortunately she already feels like she can't trust him. Hence leaping onto this thread.

If I get this wrong and can't find the very best options for her to choose from and the right, reliable info to weigh up alternatives I'll have to live with that failure forever. Very conscious I want to exploit that brief window, pre-treatment to give her access to the good subjective information, rather than getting dragged along blindly by the first way forward suggested. It might be the best option and the right referral, but my Mum will want to satisfy herself utterly that it's not best for the "average" person, best within the limitations of cancer care locally or best given their assumptions about her quality of life at her age, but the best for her and her cancer.

I hope I'm making sense and hoping I don't offend anyone coming on here without a confirmed diagnosis,, I'm also desperate for help.

Many many thanks in advance

Sarah

[Slewis7313]

You are certainly in the right place by joining this forum Sarah. You will get plenty of shared experiences from the friends that frequent this forum and very importanty, support and advice from the experienced and qualified support staff at PCUK (you really must use them!). It is probably just as well to start your own thread for your Mum's situation as it is easier to focus. I hope the review with the Doctor helps and that you can influence the way forward( assuming your concerns are realised).

Take care!

Steve

[Slewis7313]

I see you have already started a seperate thread Sarah!

Steve

[InfoForMum]

Sorry Sue, Sorry Steve, posted before I worked out how to do a separate thread. Thanks for the steer.

[karen17]

Hi Sarah

We are also in Norfolk and have been more than happy with the care received although being treated slightly outside area. I can't mention hospitals or oncologists on here but you are welcome to ask the nurses for my email address

Karen

[InfoForMum]

That would be fantastic Karen. I'm posting updates on the other thread I've started - will put link here in a mo, but would love to get in touch offline. I'll drop support a quick mail to get your addy.

Sarah

X

[InfoForMum]

final word here to avoid totally hijacking your thread Sue! http://forum.pancreaticcancer.org.uk/viewtopic.php?f=9&t=1137&p=9162#p9162 My own thread with regular updates.

[suef]

Dear Sarah,

Please don't worry at all about 'hijacking my thread'. We are here to offer help and support, no matter what the thread is called! I am so glad you are finding support, please keep in touch and let us know how you are coping.

Love,

SueF

[InfoForMum]

Thanks Sue

X

[LindaH]

I don't know what I would have done without my Oncologist, I can honestly say he's my rock. He does anything.....absolutely anything to help me and I feel so lucky to be with him.

Let's face it, when your Oncologist phones you to ask how you are at 7pm in the evening, well I think it speaks volumes.

Sue and Sarah, stick to your guns and find the best consultant you can.

Linda