Prostate cancer. A useful resource.

Sunseeker 115 said:
On the 6 monthly one, injection in the arm no after effects from it the first time due another in June its Decapeptyl 22.5 mg. There seem to be quite a few different ones about.
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I am on 6 monthly decapeptyl no.5 in June and then only one more in December they give them in your buttock in West Yorkshire only a slight discomfort for a couple of days.
Chasnam
 
Rapido925M said:
Results back today: Grade 1 cancer. Could be a lot worse 🙄

Cancer cells found in 5 out of 20 biopsies.

They will discuss me further on Monday and present a plan. Probably active surveillance 👍

Gordon
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Think positive, many of us have been in the same situation and are looking forward to a good outcome. If you've not been there go and look at the Macmillan Prostate Cancer Forum where you will find lots of info and help.
 
68c said:
Just had the robot surgery feeling better than I expected. Now lying in a very clever bed with loads of buttons, may be a bit heavy for the van though. Tried to add photos of the various drains etc but the porn filter stopped it.
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How are you getting on?
 
pagey said:
How are you getting on?
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Pretty good thanks. Now seven days after the op. As expected sore tummy for three or four days like I had done too many sit ups. Digestion now normal. Been pottering around the garden, just light stuff. Really looking forward to having the catheter out in a couple of days. Mrs 68C fussing around, stopping me doing too much. Not sure how long I will be wearing a nappy, but I suppose that is life.

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Rapido925M said:
Results back today: Grade 1 cancer. Could be a lot worse 🙄

Cancer cells found in 5 out of 20 biopsies.

They will discuss me further on Monday and present a plan. Probably active surveillance 👍

Gordon
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I’m on active surveillance too, though as I said in an earlier post #509 my Consultant advised me to take control of it.
My GP practice have put me on a priority phone line, so instead of ringing and getting “you are currently number 22 in the queue” I can ring straight through and book my 12 week PSA blood tests. Apparently the number is for patients with serious conditions only, whilst I appreciate the service it made me feel worse about my health.
I have a MacMillan care coordinator that I can ring direct for any query regarding the Urology services, like speaking to the Consultant or choosing the date for my next biopsy session.
I agreed my plan with Mr Smith the Consultant, he wrote to the GP and MacMillan and so far it all appears to be working well, with me making sure what should happen happens.
 
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Active Surveillance is what they are recommending. Gleason Score is 6 👍👍👍

However, my family think that I should have my prostate removed so that there will be no further problems and I am still relatively young and relatively healthy: 73y old and just into Type 2 diabetes threshold.

I will discuss this with the surgeon, probably in June

Gordon
 
Rapido925M said:
Active Surveillance is what they are recommending. Gleason Score is 6 👍👍👍

However, my family think that I should have my prostate removed so that there will be no further problems and I am still relatively young and relatively healthy: 73y old and just into Type 2 diabetes threshold.

I will discuss this with the surgeon, probably in June

Gordon
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My Gleason was 6 (3/3) and I had the choice of removing it completely but looking at the possible/likely after effects it made much more sense, to me, to only go down that road if absolutely necessary.
However, it’s a big decision to know you have cancer and effectively do nothing about it, other than keep an eye on it. Some may not be able to live with knowing it’s there.
 
Rapido925M said:
so that there will be no further problems


Gordon
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Sadly doesn’t always work like that, possibility of side effects and complications need to be carefully considered, talk to the surgeon and do your own research. You should be able to access online some relative data about your surgeons performance.
 
Little update I had my first rt session today at St barts it all went fine only 19 more to go. Had the chat with the operator who pointed out the possible side effects then the enema, drink 2 bottles of water find toilet then onto the machine which was nothing like the one in james bond I was lined up with my 3 little tattoos they gave me at the last visit the turn on machine a little bit of noise the head moved right round me and the table I was on and that was it done in 3 minutes and that included lymph node, they gave me my app for tomorrow it's at 08.15 deep joy

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pagey said:
Little update I had my first rt session today at St barts it all went fine only 19 more to go. Had the chat with the operator who pointed out the possible side effects then the enema, drink 2 bottles of water find toilet then onto the machine which was nothing like the one in james bond I was lined up with my 3 little tattoos they gave me at the last visit the turn on machine a little bit of noise the head moved right round me and the table I was on and that was it done in 3 minutes and that included lymph node, they gave me my app for tomorrow it's at 08.15 deep joy
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Interesting that they are doing your lymph nodes as well

I presume pelvic lymph nodes, I have agreed to go on a trial with the third option being high dose RT on Prostate plus lymph nodes, not standard treatment here

I will be told before I start RT which I am getting but have no choice of which one I get

Hoping for the higher dose for more reassurance 🤔👍
 
This thread has prompted me to have a PSA test, I've had an enlarged prostate since I was about 50 but I think that is fairly normal.
Our surgery stopped doing regular PSA test about 10 years ago unless you have symptoms. I asked for one about 4 or 5 years ago when I got home from the surgery I had the doc on the phone for 10min trying to convince me not have it, I did and it was all OK.

This time I rang as I needed to make an appointment for a blood test as BP pills had changed so I asked for a PSA, no problem this time.
All good 0.9n/ml.
 
DavidG58 said:
Interesting that they are doing your lymph nodes as well

I presume pelvic lymph nodes, I have agreed to go on a trial with the third option being high dose RT on Prostate plus lymph nodes, not standard treatment here

I will be told before I start RT which I am getting but have no choice of which one I get

Hoping for the higher dose for more reassurance 🤔👍
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I'm also on the trial & completed the last of my five sessions last week, 13th May. I was hoping to get the lymph nodes too but I was randomised out, so it was only the prostate that got treated.
Only minimal side effects so far - radiation induced bowel irritation & some bladder issues but no noticeable irritation of the skin/treatment sites.

Good luck with your treatment (y)
 
Spara4042 said:
I'm also on the trial & completed the last of my five sessions last week, 13th May. I was hoping to get the lymph nodes too but I was randomised out, so it was only the prostate that got treated.
Only minimal side effects so far - radiation induced bowel irritation & some bladder issues but no noticeable irritation of the skin/treatment sites.

Good luck with your treatment (y)
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I understand there are two levels of prostate only , one with a stronger dose

If offered that or the lymph node options I will have inserts in my prostate rather than just tattoos for better accuracy 🤔👍

Whichever I get I hope to get better ongoing monitoring

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Rapido925M said:
Active Surveillance is what they are recommending. Gleason Score is 6 👍👍👍

However, my family think that I should have my prostate removed so that there will be no further problems and I am still relatively young and relatively healthy: 73y old and just into Type 2 diabetes threshold.

I will discuss this with the surgeon, probably in June

Gordon
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Average life span is 82. You'll get another 10 years if you do nothing (according to the stats)
 
pagey said:
Had my second rt today its really made me tired not looking forward to no3 on monday
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Good luck with the rest of your treatment :hugs:

I guess I've been exceedingly fortunate, as I've only (so far) experienced some mild side effects & minimal tiredness.
Still early days, 14 days post treatment, as I was told the side effects could peak after 2 - 3 weeks. I'm keeping my fingers crossed that this is as bad as it gets :mm:
 
For those of you that have been through PC, in particular hormone treatment, did / does anybody else have abdominal discomfort / pain ?

I have been checking side effects on NHS and PCUK websites and it would appear that in a few cases swelling of the prostate can press on nearby organs causing these symptoms

I am booked for a welfare phone call tomorrow and will check with them , but expect to need a chat with my doctor, not due back to consultant till early August which seems a long wait

This is all playing with my head and I am not coping well, quite a lot of feeling sorry for myself , but genuinely quite scared it has spread

Interestingly I found this looking through papers for guidance

IMG_2368.jpeg


Pretty much sums me up
 
DavidG58 said:
For those of you that have been through PC, in particular hormone treatment, did / does anybody else have abdominal discomfort / pain ?

I have been checking side effects on NHS and PCUK websites and it would appear that in a few cases swelling of the prostate can press on nearby organs causing these symptoms

I am booked for a welfare phone call tomorrow and will check with them , but expect to need a chat with my doctor, not due back to consultant till early August which seems a long wait

This is all playing with my head and I am not coping well, quite a lot of feeling sorry for myself , but genuinely quite scared it has spread

Interestingly I found this looking through papers for guidance

View attachment 904591

Pretty much sums me up
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Stick in there David. Being diagnosed and having information that can potentially change your life or end it is bound to have some effect. I am currently on HT and feeling more and more tired by the day. Hot flushes like there is no tomorrow but no stomach pains. It'll be at least 18 months from diagnosis to starting RT for me. I called the hospital in March I was number 98 on the list. Rang 2 months later and I had progressed to number 71. Pardon me but WTF!!!

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ive been on ht now for 6 months no pain at all but far too much weight gain and tiredness, i was told at the start i would have rt for 2 years but i will look like the butchers dog by then so i will try to change that. Today i had my 8th session of rt again no pain but even more tired and a headache but by far the most irritating thing is the daily enema its a nightmare it was still working this morning from last friday
 
Hirsch said:
Stick in there David. Being diagnosed and having information that can potentially change your life or end it is bound to have some effect. I am currently on HT and feeling more and more tired by the day. Hot flushes like there is no tomorrow but no stomach pains. It'll be at least 18 months from diagnosis to starting RT for me. I called the hospital in March I was number 98 on the list. Rang 2 months later and I had progressed to number 71. Pardon me but WTF!!!
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Hirsch maybe you would have success in bringing your RT forward if you do like I did.

I went in person to our RT department (Lingen Davies Unit @ The Royal Shrewsbury Hospital) and asked to speak to someone face to face about a date for the start of my RT. Within three days I had my CT scan date seven weeks later (next Friday) and date to start my RT immediately on returning from holiday on the 18th July all in writing on an email from the department. The negotiations about the dates were all very amicable and confirmed with some flexibility on behalf of both parties.

Prior to the face to face meeting the best I could get from phone calls to the department was "We will call you when we have a slot for your treatment".

Moral of the story is -- Be proactive!

If you are a member of the Macmillan Online Community you will find me there using the name Osca2023 and my progress through the PC journey is detailed in my profile.
 
So i can only speak on my own experience from ht /rt 20 fractions , and also what i read on prostrate uk /nhs sites . Whilst having ht /rt i had bone pain , nite sweats ,tiredness , weepy , urgent peeing episodes , you can help yourself , going for short walks , knowing where nearest toilet are ( pee bottle , towel , change of boxers ) ,unexpected bowel movements , do not drink any caffine drinks , drink cranberry juice , peppermint tea , try and stay on a healthy diet .
As for treatment after ht is not uncommon to have big gap between diagnosis ht and then rt , trust your oncologist and MDT they deal with this day in day out , remember this is a very very slow growing cancer . All treatments have the same ‘ success ‘ rates . But i have mentioned before i find it ‘strange ‘ that different health trusts approach and treat PC. in different ways ??? As a last comment try and keep john thomas in working order you will benefit from that after treatment .
 
rod_vw said:
Hirsch maybe you would have success in bringing your RT forward if you do like I did.

I went in person to our RT department (Lingen Davies Unit @ The Royal Shrewsbury Hospital) and asked to speak to someone face to face about a date for the start of my RT. Within three days I had my CT scan date seven weeks later (next Friday) and date to start my RT immediately on returning from holiday on the 18th July all in writing on an email from the department. The negotiations about the dates were all very amicable and confirmed with some flexibility on behalf of both parties.

Prior to the face to face meeting the best I could get from phone calls to the department was "We will call you when we have a slot for your treatment".

Moral of the story is -- Be proactive!

If you are a member of the Macmillan Online Community you will find me there using the name Osca2023 and my progress through the PC journey is detailed in my profile.
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Thanks rod. I have been thinking of pushing them on.
 
Yes you cant beat a face to face meeting to discuss things

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