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Hobbs
Posts: 9
Joined: Sun Apr 17, 2016 5:27 pm

Proton Therapy for Pancreatic Cancer

Postby Hobbs » Mon Apr 18, 2016 11:58 am

Hello,

I'm new to this forum, and this is my 1st post.

My mother has had all the symptoms of Pancreatic Cancer, and today we will find out the result of the biopsy.

The surgeon here in the UK who examined her initial CT scan said that it could be cancer, but he was not in favour of doing surgery on her.

I was a bit sad on hearing that; but the only options remaining are Chemo (not very promising) and Radio.

However, we did hear about Proton Therapy, and I'm looking into this now. I'd like to know if anyone here has tried this as a sole procedure in a pancreatic cancer treatment plan?

* Have you been cured of the cancer?
* What were the side effects?
* What stage of cancer were you at (0 to 4) when you started your Proton Therapy?

Its an option that is unavailable in the UK, so it seems our only options are in the Czech Republic or Germany.

Has anyone been there for Pancreatic Cancer treatment?

Could you tell us perhaps of your experiences?

Many thanks for any feedback you can provide,

H

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Proton Therapy for Pancreatic Cancer

Postby Didge » Mon Apr 18, 2016 1:42 pm

Hello Hobbs. Sorry I don't have any knowledge of proton therapy for pancreatic cancer. I wonder why you have been told no surgery. It is because they are unsure that it is pancreatic cancer, is it your mother's age? (you don't say how old she is) but I would have thought that the first thing to do is get a second opinion and do some research as to age for operations (if that is an issue). Otherwise many have had good results with nanoknife for individual small tumours. Good luck!

PCUK Nurse Dianne
Posts: 308
Joined: Tue Aug 14, 2012 3:29 pm

Re: Proton Therapy for Pancreatic Cancer

Postby PCUK Nurse Dianne » Mon Apr 18, 2016 2:26 pm

Hallo Hobbs,

Welcome to the forum, i am sure you will find this a very comforting and supportive place with some great support from the forum family. I am sorry to hear this is a difficult time awaiting results for your mother, and this is so often an anxious time. It may be helpful for you to touch base with us (specialist nurses) on the support line as we may be able to expand on some of the information you have been given so far and help with further explanations. From a perspective of chemotherapy and radiotherapy, both of these can also provide patients with symptom relief and other additional benefits and again more than happy to talk through these with you if this would help.

With respect to the Proton Beam therapy, this has been used frequently in brain tumors especially in the European countries. We have been made aware that there will be some Proton Beam Treatment Centres opening in the UK within the next few years and you will see from the link below this is in Christie's at Manchester, University College Hospital in London and also The Churchill Hospital in Oxford, and I do appreciate this does not fulfill your current needs. At present there is a low beam proton therapy facility available, however this is used for rarer tumors such as eye tumors.

http://scienceblog.cancerresearchuk.org ... re-we-now/

There is a private company that is a subsidiary of the European group that does have a UK base, and I have attempted to call twice this afternoon, however unsuccessful in being able to speak to personnel from this company. I have provided the link below and it may be that you may wish to make email contact if you would like some further information from them.

http://ukprotontherapy.co.uk/cancer-tre ... n-therapy/

I would also suggest that this would be a good conversation to have with your mother's consultant and consider their expertise and thoughts as they will be most up to date on treatment regimes that are being offered. In many instances it is standard to have a course of chemotherapy prior to other treatments, for example both Radiotherapy and Nanoknife.

I do hope this is helpful and please do not hesitate to be in touch with us if you would like to have a discussion about this. We would of course also encourage any information from other forum family members if you have found any helpful information for Hobbs during your own information seeking.

Regards,

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK
Free phone - 0808 801 0707
Email: support@pancreaticcancer.org.uk

PCUK Nurse Dianne
Posts: 308
Joined: Tue Aug 14, 2012 3:29 pm

Re: Proton Therapy for Pancreatic Cancer

Postby PCUK Nurse Dianne » Mon Apr 18, 2016 3:29 pm

Dear Hobbs and others,

I have since had a call from the Proton Beam Therapy Centre in response to my previous call. I can update you with some information that may be helpful to any of those interested.

The Proton Beam Therapy Centre does not offer treatment in the UK, however has an 'administrative base' in London. The treatment is offered in Prague, and in cases for Pancreatic Cancer is offered selectively, depending upon the individual case scenario. This would be similar to that with Radiotherapy and Nanoknife. As I had suggested the Proton Beam therapy is offered alongside chemotherapy, so not as a 'stand alone' treatment.

For any persons wishing to enquire further there is an email attachment in the link in previous email and as with all treatment options, the individual patient clinical information would need to be viewed in the first instance (evidence of CT/MRI or other investigations).

I hope this is helpful for you all, and please do be in touch if you have any queries.

Dianne
Pancreatic Cancer Specialist Nurse

Hobbs
Posts: 9
Joined: Sun Apr 17, 2016 5:27 pm

Re: Proton Therapy for Pancreatic Cancer

Postby Hobbs » Mon Apr 18, 2016 7:06 pm

Didge wrote:
> Hello Hobbs. Sorry I don't have any knowledge of proton therapy for
> pancreatic cancer. I wonder why you have been told no surgery. It is
> because they are unsure that it is pancreatic cancer, is it your mother's
> age? (you don't say how old she is) but I would have thought that the first
> thing to do is get a second opinion and do some research as to age for
> operations (if that is an issue). Otherwise many have had good results
> with nanoknife for individual small tumours. Good luck!

Hello Didge,

Many thanks for your response.

Well, my mother is 73 years of age. The consulting surgeon said that he does not believe that she is "fit" for surgery.

I will look into this "nanoknife" issue. I've heard of it before. Is it an invasive procedure?

Hobbs
Posts: 9
Joined: Sun Apr 17, 2016 5:27 pm

Re: Proton Therapy for Pancreatic Cancer

Postby Hobbs » Mon Apr 18, 2016 9:08 pm

PCUK Nurse Dianne wrote:
> Hallo Hobbs,
>
> Welcome to the forum, i am sure you will find this a very comforting and
> supportive place with some great support from the forum family. I am sorry
> to hear this is a difficult time awaiting results for your mother, and this
> is so often an anxious time. It may be helpful for you to touch base with
> us (specialist nurses) on the support line as we may be able to expand on
> some of the information you have been given so far and help with further
> explanations. From a perspective of chemotherapy and radiotherapy, both of
> these can also provide patients with symptom relief and other additional
> benefits and again more than happy to talk through these with you if this
> would help.
>
> With respect to the Proton Beam therapy, this has been used frequently in
> brain tumors especially in the European countries. We have been made aware
> that there will be some Proton Beam Treatment Centres opening in the UK
> within the next few years and you will see from the link below this is in
> Christie's at Manchester, University College Hospital in London and also
> The Churchill Hospital in Oxford, and I do appreciate this does not fulfill
> your current needs. At present there is a low beam proton therapy facility
> available, however this is used for rarer tumors such as eye tumors.
>
>
> http://scienceblog.cancerresearchuk.org ... re-we-now/
>
> There is a private company that is a subsidiary of the European group that
> does have a UK base, and I have attempted to call twice this afternoon,
> however unsuccessful in being able to speak to personnel from this company.
> I have provided the link below and it may be that you may wish to make
> email contact if you would like some further information from them.
>
> http://ukprotontherapy.co.uk/cancer-tre ... n-therapy/
>
> I would also suggest that this would be a good conversation to have with
> your mother's consultant and consider their expertise and thoughts as they
> will be most up to date on treatment regimes that are being offered. In
> many instances it is standard to have a course of chemotherapy prior to
> other treatments, for example both Radiotherapy and Nanoknife.
>
> I do hope this is helpful and please do not hesitate to be in touch with us
> if you would like to have a discussion about this. We would of course
> also encourage any information from other forum family members if you have
> found any helpful information for Hobbs during your own information
> seeking.
>
> Regards,
>
> Dianne
> Pancreatic Cancer Specialist Nurse
> Pancreatic Cancer UK
> Free phone - 0808 801 0707
> Email: support@pancreaticcancer.org.uk

Hello Diane,

Many many thanks for your kind and well informative response.

My sister discovered Proton Therapy, and as you say, it seems more suited to eyes. From the posts above, I see that NanoKnife is a good option.

I will try and focus on that.

Perhaps I should open a new thread for that? or is there an existing thread you can direct me to?

Many thanks,
Hobbs