Prostate Cancer Buddy Experience

[PSA680]

Hi - i volunteer as a prostate cancer buddy (working for MacMillan a charity very much embedded in the UK National Health Service). The idea is that I provide non medical peer to peer support to a fellow PCa patient as part of their support network. The objective is to provide support, share experiences (including using this forum!) and, if possible, give realistic hope & context to the newly diagnosed patients. My oncologist and specialist nurse are very supportive of the concept but, to date, in the 9months in the role I have been referred once through this formal route and it was a simple question about hot flushes. My oncologist said that his female breast cancer patients embraced the concept and use buddies much more. I have however been buddying a ‘brother’ who lives 100miles away who a friend asked me to contact - it was her uncle. We FaceTime once a week and both get a lot out of our relationship.

My question is; does anyone have any experience/ idea of how to make the Buddy role more accessible & used by more patients? I’m sure the role isn’t unique to the UK and may be done much better in other parts of the UK and across the world.

Kind Regards Darren

[9020B]

I guessing you already know about MacMillan.org.uk cancer support. Their prostate cancer forums have several regulars that offer peer to peer support. If you have more personal support to offer, I'm sure someone there can tell you where to turn.

[PSA680 in reply to 9020B]

Thanks for the reply. Yes I work for the local MacMillan team at my local hospital who are collocated in the oncology unit with the nhs team.

[Darryl Partner]

Malecare is rolling out a similar program before Christmas, as part of our Cancer Copilot initiative.

[JohnInTheMiddle]

A buddy system for people with medical conditions, in our case metastatic prostate cancer, is a really wonderful idea. I have participated in it several times. I think it's very difficult to make it work. For many, many reasons.

Nevertheless we can count on NGOs to continue to push the idea.

[Tall_Allen]

I asked a friend if he wanted to join our advanced prostate cancer support group and his reply was "I'd rather be shot in the head!" Some of the men in my support groups were "trained" to share previously in AA. Women are just built differently - they share naturally. I've found that men are more into solving problems (e.g., how do I get rid of hot flashes? what is a good exercise routine? etc.), while women naturally seek out emotional support. That is not to say that men don't feel as strongly as women, just that the approach has to be different. I have used a MSW or other clinical psychologist to create an environment conducive to men sharing feelings.

It is also difficult for men to ask their doctors for such support, so referrals are limited. Over the years, I've developed good relationships with a few doctors that ask me to talk to their patients.

[PSA680 in reply to Tall_Allen]

Many thanks Tall_Allen

[Gearhead in reply to Tall_Allen]

FYI, "sharing" is an important part of Reel Recovery fly fishing retreats: reelrecovery.org

[RazorSaw in reply to Tall_Allen]

Thanks for sharing your perspective. Very helpful.

[lcfcpolo]

Hi. I'm in Leicester in the UK. We have our own prostate cancer group, Prostaid. We have specialist nurses. The buddy system is quite informal, basically if you ask for a buddy for a particular reason e.g., to talk about a certain medication, they will match you up with another patient in the area. We also have 4 groups that meet once a month where you can meet others. One of the nurses also attends these meetings for any medical type questions. You could contact Prostaid to discuss this.

It works well. I contact Macmillan for financial advice. As we all know with prostate cancer, everyone responds differently, so it's hard to match with someone who is identical to you. I think that there is a role for a buddy system, particularly for guys on their own. I once recommended to someone here to contact Prostate Cancer UK but they are strictly standard of care only and when you have advanced cancer particularly, people want (and need) to understand options. Please keep in mind that the UK is a long way behind in approving treatments such as Pluvicto, Actinium and immunotherapy, so people need to come here for information.

I think contacting UK people here and on the advanced prostate cancer Facebook group is a good idea but I'm not sure reading your message exactly what your remit is and isn't. What as a buddy do you offer. Is it advanced prostate cancer only?

[PSA680 in reply to lcfcpolo]

Hi Ivfcpolo - I’m a MacMillan cancer buddy for Blackpool Victoria hospital. The role is non specific but I’ve asked only to be referred for prostate cancer and preferably Advanced prostate cancer based on my diagnosis & therefore experience. Basically MacMillan refer interested patients to me as a fellow cancer patient & we take it from there. Clearly I don’t provide any medical or treatment advice - it’s purely an experience sharing & support role.

[lcfcpolo in reply to PSA680]

That's a great role to provide.

[lcfcpolo in reply to PSA680]

I've just read your profile. So we have been on Xtandi a similar amount of time. If I'm up in the north west then I will message you and maybe we can meet for a coffee and chat.

[PSA680 in reply to lcfcpolo]

That would be great my friend

[Conlig1940]

Darrren,

I became an advocate by accident .

An author and part time contributor to our local newspaper, here in Canada , wrore 3 articles about his journey to Germany for NanoKnife surgery , which was very successful .

I contacted hiim to advise him the NanoKnife procedure was widely performed in Toronto near his home , of which he was unaware . We discussed prostate cancer at length .

Subsequent to his articles, people have contactted him directly for advice . He refers them to me . I am working with fellow "Cancer Travellers " from the UK , EU , Australia , USA and Canada . We communicate on a regular basis .

Others are referred to me by word of mouth . It's like sales . " There is no better way to grow your sales than by personal references " -- It takes time .

My 1st directive to new cancer patients is " Don't panic and choose a treatment you will regret later . Plus you are not going to die tomorrow , you probably had the cancer for 10 years or more and never knew you had it . And finally , and most important . Educate yourself buy Dr. Patrick Walsh's book 5th Edition " Guide to Surviving Prostate Cancer " .

We move forward from here . I often refer them to others who have SIMILAR - NOT - THE SAME - ISSUES AND CONCERNS , who I have counselled and in turn became advocates themselves . We are on the Mayo Clinic Collect Forum .

Good luck .

p.s. Google : Niagara Now - NanoKnife Surgery . by William Thomas .

[PSA680 in reply to Conlig1940]

Thank you very much Conlig1940 - very useful - I bought that book as soon as I was diagnosed 👍🏿