OH just diagnosed with LAPC

User

Posted 04 Apr 2015 at 00:46

Hello

I am still in utter disbelief that I'm even writing this. Im not really used to sharing my feelings and asking for help. It seems In my life to date i've always been the one with the advice but feel very humbled and grateful for any advice that this community can share with me.

My OH has just been in intensive care suffering from acute renal falier caused by localy advanced prostate cancer. He iPad stabilised after having two uriita stents fitted and dialysis. He has a Gleason score of 8 and his PSA is 10.5. There is no indication of lymph node or bone mestitis at this point. He has had a hormone injection that repeats three monthly and an anti androgen pill for the past 5 days.

He is 49, a former Iron Man, keen cyclist and just about the most gentle, unassuming man you could meet. I'm his wife of 20 years and we have a 12 year old daughter.

We don't live in the UK which is currently adding to our frustration although we are both UK citizens born and bred but have worked in Hong Kong for a number of years.

This is our first week dealing with the news. We have told our daughter choosing to promote the positive stats and ignore anything more complicated until it's warranted . She's actualy doing very well , she says she's going to remain positive and get on with it!

Quite insightful.

Luckily we are on Easter holidays so we can keep an eye on her.

His PC is unusual we have been told in that it's more at the back of the bladder rising to both uritas by 4-5cm on each and in the central area of the seminal vesicles. The total size is that if a ' mini Mars bar' . Irronically, the prostate is not really enlarged as the cancer is more of a membrane that sits on the surface and spreads from that point. The pathology from the biopsy is conclusive however. It is defiantly PC.

We feel totally in the dark here. Apart from paying for all our treatment ourselves, the oncologist we have is not very forthcoming , my husbands treatment after hormone therapy will be IMRT for 8 weeks.. After that , I'm not sure.

Do you think we can get a second opinion in the UK without travelling there? can you recommend a specialist centre that deals with LAPC. I guess we want to feel secure in our diagnosis before we comity to any kind of radiotherapy.

Thank you ... We would be very grateful for any advice.

User

Posted 04 Apr 2015 at 19:36

Dear Loopy 101

I am sorry to see you here, but you are in the right place for advice.

It is good news to see that your OH cancer has not spread to the bones or lymph nodes, as it means that it is contained and therefore will benefit from the 37 sessions of IMRT that are planned. The IMRT machine is (I understand) the best type that you can get at the moment. I am no expert, but based upon what happened to us, he will remain on HT after the radiotherapy for several years, and maybe forever (permanently or intermittently) it depends how he responds.

I think that you could get a second opinion over the phone, if you are able to send all of your results (bloods, scans, biopsy results etc) over to your chosen clinic. If you ask your Consultants secretary (wherever you are being treated) they should arrange it for you. We did this and asked an Onco at a private Prostate Clinic in London to review the results. She was thorough and informative and we had about an hour on the phone with her. She followed it p with a letter saying that we were getting exactly the same treatment that she would give us in London. This was reassuring.

I would be happy to let you know her name and contact details if you message me privately, as we are not allowed to mention names on here. I would suggest that you research where you go for 2nd opinion though depending upon who specialises in your OH sort of cancer as you said it was quite unique in terms of position. I know of others who have gone to USA for 2nd opinions, and with internet technology you could choose anywhere for this. There are quite a few prostate specialists in the UK and others on here will be able to advise further.

I hope that this helps a little. Thinking of you at this difficult time.

Alison

User

Posted 04 Apr 2015 at 21:21

An unusual situation in terms of the PCa location and your being in Hong Kong and looking for a second opinion probably from the UK. Does your man qualify for an opinion/treatment within the NHS or would he have to fund this himself? If the latter is the case, this could still be done privately in the UK. Some of the major UK hospitals are used by people from abroad but referrals and treatments in the USA can be costly.

As regards RT, if this is decided on, IMRT is the minimum external beam treatment one should aim for. IGRT is better and there are also more advanced machines such as Rapid Arc though these are not yet widely available in the UK. Then Proton Beam MAY be a viable option at somewhere like the centre in Prague.

Barry

User

Posted 05 Apr 2015 at 07:46

Thank you very much for your thoughtful words and suggestions. I think I know of the London centre so I will be looking into that after the weekend. OH's headaches have returned today. These were the reason we ended up in ER in the first place. The MRI CT and other scans showed no uptake in the spine bone or brain so quite possibly unrelated but it's a huge worry .

since the uretral stents were fitted and kidney functioned returned to normal his headaches had dissipated. It's so soul destroying to see him back in bed today in pain.

I know he doesn't want to return to hospital but if he hasn't improved in the next few hours we'll have no choice.

It's good to know we have the technology here in HK. IGRT sounds interesting and I will investigate that immediately.

Thank you again Man with PC and Alison. You're the only voices of reason at the moment.

User

Posted 05 Apr 2015 at 09:28

Hello Loopy and welcome
You will get help on here, that's for definite.

I can't offer advice regarding your husband's particular cancer as ours was different.
Even though you are in Hong Kong, you can still access this site's "Tool Kit" which may help you understand more about treatments, symptoms and dealing with the emotions PC produces.

Go back to the home page, then Information, then Publications. They can be downloaded.
Hope that helps.

Keep positive. Not only your husband needs you to be strong but your 12 year old as well. It's good that she currently has an old head on young shoulders.
Children are often more resilient than we give them credit for.

Best Wishes
Sandra

Edited by member 05 Apr 2015 at 11:32 | Reason: Not specified

We can't control the winds - but we can adjust our sails

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