Dads diagnosis - unanswered questions

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User

Posted 05 Aug 2014 at 23:34

Hello everyone ,

I've been reading lots of threads on this forum over the past few days and wanted to say what a fantastic resource it is , so thank you .

My dad was diagnosed in Oct 2013 he Is 64 and very fit/healthy with a psa of 65 and Gleason 9 ,after visiting the Dr for frequent trips to the loo etc . The bone scans and MRI were clear and indicated it had not spread , since then he has had ht in the form of an implant and or injections and tablets , sorry I can't recall the details but I hope that makes sense . In April his PSA was 0.8 , good news - we celebrated . At the beginning of July he started radiotherapy , 23 sessions , and today I dropped him at the hospital to have Bracchytherapy tomorrow . I've been so upset since I left him this afternoon , seeing my Dad trying to put on a brave face when he's terrified has really shaken me and somehow made it all real .

Until recently I haven't been to his medical appointments , so I know nothing of : stage , n, mx etc . Are you definitely told this information- or do you ask for it ? From speaking to others in the radiotherapy waiting room it seems like treatments differ so much and I'm thoroughly confused - apologies if this is so basic but why do some men have surgery and others don't ? Is Bracchytherapy used in t1/t2 only ? Or is it an alternative for when surgery is not possible ? I know psa is only an indicator 1 but one lady told me I must have got his psa wrong at 65 , she said it must be 6.5 as 65 is very high - which has me worried . My Dad's consultant recommended the treatment he is receiving , surgery apparently had the risk of greater side effects and was not recommended by the surgeon .

Thank you for any help you can give me and wishing you all the very best of luck in your journeys ,

Sarah.

User

Posted 06 Aug 2014 at 09:38

Sarah, I think you are worrying unnecessarily. Basically, if a man is diagnosed with early stage cancer he has more options than a man diagnosed later. It is usually left up to the man to choose which treatment he prefers although some oncologists & urologists will make a recommendation if asked to by the patient.

For men with a diagnosis like your dad, the choice tends to be between surgery and radiotherapy (RT). Both of these are referred to as radical treatments because they potentially can cure the cancer. If a man chooses RT, he will usually have hormones for a period of time as well, to weaken the cancer cells and help the RT to work. Just to complicate things, some men can choose to have brachytherapy which is a type of RT but is quite new - there are 2 kinds of brachy.

It sounds like your dad is very fortunate; for a man to be suitable for brachy there are a number of conditions such as it has to be early stage, his prostate gland must not be too big and the weeing problems not too bad. Brachy would have been my husband's first choice of treatment but it wasn't available to him so he chose surgery instead.

Of those men who have all the curative treatments available to them, some chose surgery because they want to have the cancer out of their body and are willing to accept what can be devastating side effects. Some choose RT because they believe that will be the best chance of a cure, or because they don't want to risk the side effects of surgery and prefer to take their chance on the side effects of the RT/HT not being too bad. Some men can't have surgery because of other medical conditions. Men with a very large prostate might be unsuitable for keyhole surgery or brachy but can still have the traditional style of surgery or normal RT.

Just to confuse things, some men have RT because the cancer is starting to escape out of the prostate and the surgery is not an option. Men with very advanced cancer which has spread may have RT just to treat pain in their bones etc. so the men you meet at dad's clinic may be at all different stages and with very different diagnoses to him.

If it is any comfort to you, the lady you met is wrong & right at the same time. 65 is high if you consider that the NHS says a healthy man in his 60s should have a PSA of less than 4. But we have men on this forum diagnosed in the hundreds and thousands so I don't think you should be concerned that dad had a PSA of 65 - it clearly wasn't too high for his medical team to think they could cure him.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 06 Aug 2014 at 09:49

Thinking about your other question re scores etc, yes your dad will have been given this information but perhaps in bits & bobs. It will also have been sent to his GP. You can work some of it out yourself:
- as they are offering him brachy, you can assume he is not T3 or T4 so must be T1 or T2. Men diagnosed at first as T1 are often upgraded to T2 once all the scans etc are in
- Dad is N0 because the scans indicated no spread to lymph nodes
- he is M0 because his bone scan was clear

So in all probability, he is T2 N0 M0 but he could ask the GP or his nurse specialist at the hospital to check this. I assume you know that having a Gleason score of 9 is a concern, as it puts dad into the high risk category but if you are going to try to get more information about this .... Was he a G4+5 or a G5+4 ? If you can find out let us know.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 06 Aug 2014 at 11:51

Hello Sarah and Welcome.
Second everything Lyn has said. Wise comments
Your dad was probably given a designated nurse/contact. Information regarding the original diagnosis, staging, Gleason etc can be obtained through that person.
Get your dad to just ring the number, have pencil and paper ready and jot down the answers. Or you can do it for him, with Dad standing by, if he would feel happier that way.

My husband had seed brachytherapy. You didn't say what brachytherapy your dad was going to have.
There are two forms. Low dose seed which is permanent (seeds left in) and high dose brachytherapy (temporary).

My husband was eligible because he had Gleason 3+4 and PSA of 6.3. His prostate was relatively small which also makes a difference to being able to have it done. He was also T2 NO MO.

Get hold of the "Tool Kit" from this site (available via information on the top band)
IT is free and is a whole set of pamphlets full of information about diagnosis, treatments and side effects.

It arrives pretty quickly too.

Does your dad take anyone with him for consultations or is he going it alone.
Two heads are better than one and can take it all in better.

IT's good that your dad has you to support him. Who is supporting you?

If you need help just come back here. Everyone stands together.

Let us know how he gets on.

Best Wishes to both of you.

Sandra

Edited by member 06 Aug 2014 at 12:04 | Reason: Not specified

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

User

Posted 07 Aug 2014 at 20:32

Thank you both for taking the time to give me such detailed and helpful replies , I really do appreciate it .

I researched the Gleason score and found that a 9 is very concerning , but I've no idea as to whether it's made up of 5 + 4 or 4+ 5 . What does the difference mean ? I have found the contact details for the nurse so I will give her a call tomorrow with Dad - very helpful advice thanks. Dad had high does Bracchytherapy I believe , as they are not permanent and he was not given any warnings re avoiding pregnant people etc . I picked him up this afternoon and he is in a great deal of pain , windy , struggling to wee and generally uncomfortable . Sandra I found your tips very helpful on your profile re pads and walking around ( I've just been to get some as he is very worried about wetting himself ).

My mum does go to appointments with him ,but I think it's hard for her to take it all in . My boyfriend is supporting me , but unfortunately his mum is currently being treated for ovarian cancer ( diagnosed a week before my Dad -) - so it's a bit difficult for us to lean on each other , hope that makes sense .

Anyway thank you both again ,

Sarah.

User

Posted 07 Aug 2014 at 22:19

Well the numbers (1-5) describe how distorted the individual cells have become. A 1 would be normal obviously and a 2 tends not to be used very often. So the cancerous cells of men with prostate cancer are rated from a 3 to a 5. There are two numbers in a Gleason grade, to describe how damaged the majority of cells are and then how damaged the next biggest group of cells are. So if your dad was a 4+5 that means that most of the cancerous cells are a 4 but there are also some 5s. If he was a 5+4 then the majority of cancer cells are a 5 but there are also some 4s. Having mostly 4s with some 5s is high risk but not as aggressive as someone who is 5+4. Just to complicate things, none of these numbers tell you how much of the prostate is cancerous and how much is still normal (a 1)

Edited by member 07 Aug 2014 at 23:04 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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