New member here.

User

Posted 19 Oct 2015 at 20:56

Frank

I've replied to your post on my thread about Steve's RT already. If you have any questions when you've been to see the oncologist feel free to PM me if you want to. Steve is also on Prostrap.

Once again, all the best with your consultation.

Maureen

"You're braver than you believe, stronger than you seem and smarter than you think." A A Milne

User

Posted 19 Oct 2015 at 21:23

Hello Maureen,

thank you so much for your reply, I really appreciate it! My experience so far on this forum, is how friendly everyone is.

I look forward to meeting my oncologist on Wednesday morning, so far, I've only heard good things about her work.

This afternoon, I had about 30 minutes discussion with a woman I used to be in school with, and still see at my work place, as a customer from time to time. She banged on about my picking up the phone and contact the Royal Marsden and get cracking with my treatment! She ignored the fact that I explained that my treatment is practically around the corner, why phone anyone else? She didn't upset me - the result was I was at work 30 minutes longer than I needed to be! And this lady has got cancer herself! I certainly didn't suggest how she ought to take care of herself!

Sorry about that! :D But I do thank you once again, Maureen.

Frank.

User

Posted 19 Oct 2015 at 22:04

That hormone treatment you are on is incredibly important - it is starving the cancer and weakening the structure of the cells so the longer you are on it before RT starts the better the outcome is likely to be. I know it is hard but try to be patient and confident of your treatment plan in equal measure

Edited by member 20 Oct 2015 at 00:17 | Reason: Not specified

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

User

Posted 20 Oct 2015 at 19:42

Hello Lyn,

thank you so much for your post.

My appointment is 10.30am, and if we don't finish too late, my wife and I will visit our son in Cardiff for a few hours.

Frank.

User

Posted 20 Oct 2015 at 20:29

I've been reading other threads on the Treatment forum.

It seems after treatment, some members are worried about their PSA results. So now I AM confused. On being diagnosed, my PSA result was 0.9, yet I was to learn later on, that my prostate is almost full cancer. Tomorrow I go see my oncologist for the first meeting, to discuss radiotherapy treatment; so after I've had my treatment, what will they then be looking for? Does a PSA test mean anything at all in my case?

I'm not really bothered at all about this. I will be asking the oncologist what sort of result they will be looking for, and would they be able to explain to me in plain English, whether or not my treatment will have been successful.

Frank.

User

Posted 20 Oct 2015 at 23:04

Hi Frank,

As you have most likely come to realize, PSA is not a very accurate tool, that is why so much research is going on to try to find a better indicator. A very high PSA at diagnosis generally indicates cancer and probably a more advanced stage whereas the chance of cancer diminishes as the figure is much lower. However, in a relatively small number of cases there can be cancer and even in even fewer instances extensive cancer with an extremely low PSA.

Because radiation works over about 2 years it can take a long time to learn how successful the RT has been and some cancers prove to be a more radio-resistant than others. HT also generally lowers PSA considerably early on. Regular PSA tests usually provide a better indicator post treatment but if you start with a very low PSA this might not be a good indicator of progression. Certainly worth asking your consultant about.

Barry

User

Posted 21 Oct 2015 at 08:36

Hi Barry

So, in your opinion if you start with a low PSA, what is a good indicator of progression ?

Is this not the main one used ?

User

Posted 21 Oct 2015 at 08:45

Hi Old1

My PSA at diagnosis was 3.8 then 4.6 with extensive bone spread, my oncologist has me scanned every 12 weeks.

In his opinion PSA will give him no indication of progression only scans and pain.

Don't deny the diagnosis; try to defy the verdict

User

Posted 21 Oct 2015 at 09:19

Hi Old1,

My partner also had a very low PSA 6.4 on diagnosis, yet was Gleason 10 and spread to bone , lymph and soft tissue, very aggressive disease. As with Si, one of our oncologists commented that PSA was not a useful indicator of the extent and spread of the disease as it was an aggressive tumour but low PSA secreter.

Similarly, it was much more important to have regular scans to chart the progression of the disease, though when it spread to the liver and further bone involvement, the PSA did double to about 1.2. It's why I never generalise on PCa !

Other mens cases are, of course, different !

Best wishes, Fiona.

Edited by member 21 Oct 2015 at 09:19 | Reason: Not specified

User

Posted 21 Oct 2015 at 10:39

I'm beginning to wonder whats the point in having PSA tests.

Contrary to that surly the lower the PSA like undetectable, or close to it, is what we are all aiming for ?

Again I'm assuming when you get these numbers, the majority will be feeling well ?

I have only had one Onco. visit, which was based around PSA results. My next visit will again be based on PSA results, providing of course I remain as I am.

Sorry if i sound like a dum dum but this is sounding like a lottery, as you have said zarissa "Other mens cases are of course different"

User

Posted 21 Oct 2015 at 10:50

Hi Frank,

If the PSA figure range you gave on diagnosis is correct, these are exceptionally low, far lower than even those of Si whose consultant considered scans would be more appropriate to monitor progress than PSA. This was my thought but I hesitated to say so, as I was once rebuked by a member for suggesting a 'likely' course of action which in the event was not followed.

If scans are so helpful in these circumstances, it is reasonable to ask why not use as a regular monitor instead of or together with PSA checks? PSA tests cost a fraction of the cost of a suitable scan and the NHS would have neither the machines nor sufficient radiologists for the purpose. The use of scans is therefore generally restricted to special cases or situations or in some trials.

It would be interesting to learn why you had a PSA and then a biopsy with a low PSA in the first place or was this done following a DRE (Digital Rear Examination) and symptoms.

Please let us know how the consultation goes.

Barry

User

Posted 04 Nov 2015 at 21:20

Hello Man with PC,

I apologise for missing for a few weeks. I believe I had all my tests done, after the urologist performed a DRE examination. I have an abnormality on the right side of my prostate. Plus my symptoms I would say are relatively severe. I worry about travelling, for example.

I can't remember much about my consultation, as I didn't make notes, and the chappy appeared to be in a hurry!

I have to wait really until I've had my third prostap injection, a few days after Christmas. I've been given a 2 page leaflet
discussing the low fibre diet, and was given a liquid laxative.

In 2 weeks time, I go for my CT scan and have tatoos placed on my belly. One thing that concerns me as I wait for radiotherapy, is being anxious about how much water I need to drink, and how long do I wait for the radiotherapy?

I had a meeting with a group of fellow cancer patients yesterday, with the Pembrokeshire Cancer Support group. Nice friendly people greeted me, and we had a lovely time. One gentleman who had radiotherapy on his prostate 18 months ago, really put me at ease. He said, he was told to sip 2 tumblers of water and had to wait 30 minutes before treatment. I hope I can manage that!

Frank.

User

Posted 04 Nov 2015 at 22:47

Hi Frank

This was my experience with RT:

I had 37 sessions of radiotherapy and apart from the early start and the travelling it wasn't a problem. First I had to have a scan where they check the prostate and make 3 small tattoos so they can target the PCa correctly. They ask that you empty your bowels before hand and drink a bottle of water about 45-60 minutes before.

The radiotherapists were very good and told me well before hand when to drink the water so I wasn't waiting too long after having it. One thing I learnt from other men having the treatment was to take a bottle of water as the water in the drinking fountain was far too cold.

The treatment apart from dressing and undressing didn't take too long, about 2-3 minutes on the table. I was told that I might get some soreness at the rear end and to get some aqueous cream to relieve it. Fortunately I didn't get much soreness but the cream did help.

Hope all goes well, keep us all informed as you'll get a lot of help and support here.

Best wishes, Arthur

User

Posted 11 Nov 2015 at 18:16

Hello Arthur,

thank you very much for your reply.

In just under 2 weeks time, my wife and I go to the hospital, for the CT scan and to get the tatoos. I shall try not to worry too much about the water intake and waiting!

How did other members get on with the low fibre diet? Was it ok to deal with? I'm not too concerned about this, food is food. Someone has told me that it's a bland diet - well, so am I!!

I suppose I'll soon be looking forward to the RT treatment, possibly by January or February. I'll know more just before Christmas, I think.

Frank.

User

Posted 22 Nov 2015 at 20:23

Hello Friends,

in 2 days time, I will have had my CT scan, I trust it will go well.

So far, I have managed ok with the low fibre diet.

However, it's been a different story with the laxative Magnesium Hydroxide. Has anyone else had any problems using it?

I started taking it on Monday night, earlier this week. It was ok, almost straight away from Tuesday morning, my bowel movements were diarrhoea, about 2 or 3 times a day. By Friday the frequency increased to 4 times and was a bit painful. I phoned the hospital and spoke to the radiotherapy department, not sure which lady I spoke to, but she told me to continue taking it. I was too dumb to look at the label on the bottle!

Saturday morning ( yesterday ), an hour after getting up, I went for 4 bowel movements in about 40 minutes and the pain was horrendous. So I phoned the hospital again, and was transferred to the Out Of Hours service and spoke to a lovely nurse, who told me to stop taking the laxative; someone would phone me tomorrow for further advice. On Saturday late afternoon, I had 2 more bowel movements but not as uncomfortable as the morning. Also I was taking a 30ml dose.

If they tell me to take the laxative tomorrow night, I shall ask them if I just take 15ml, or none at all - as I have to travel 70 miles to the hospital. I have not enjoyed myself this weekend. Therefore will I survive all this trouble during radiotherapy - I just don't know. :(

Frank.

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