Prostate cancer. A useful resource.

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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Hi Hirsch
I am nearly 2 years down my journey HT immediately after full diagnosis 3 years so 2 injections left I am injected in my buttock and other than tender for a day no swelling or pain from it but the hot flushes were horrendous, but at the last injection in December the nurse administering it when I told her about them she said there is a drug that can help called Medroxyprogesterone and she wrote to my gp for him to prescribed it which he did, it made a incredible difference it is only a 10 week course but has kept them at bay up to now.
Hope this helps
Chasnam
 
I have been on Active Surveillance now for 18months Gleason score 3+3 MRI back in March no indication of any increase of spread. Now 6 monthly monitoring. PSA unchanged. The new Saliva Test looks to be much more accurate than the PSA, hope it is rolled out soon. I have no side effects or symptoms, and no shortage of energy.
Good luck to all on treatment programs, keep up with the Testing chaps!
 
martin2603 said:
I have been on Active Surveillance now for 18months Gleason score 3+3 MRI back in March no indication of any increase of spread. Now 6 monthly monitoring. PSA unchanged. The new Saliva Test looks to be much more accurate than the PSA, hope it is rolled out soon. I have no side effects or symptoms, and no shortage of energy.
Good luck to all on treatment programs, keep up with the Testing chaps!
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Are you not having repeat biopsies? My cancer area didn’t show up on MRI, and was only discovered by biopsy. I also chose active surveillance, Gleason 3+3. My initial PSA was 4 last July, increasing to 4.5 in January and then 4.7 in April, next due July.
Will be having my second biopsy procedure in August, a year after the first.
 
Hettie's Crew said:
Are you not having repeat biopsies? My cancer area didn’t show up on MRI, and was only discovered by biopsy. I also chose active surveillance, Gleason 3+3. My initial PSA was 4 last July, increasing to 4.5 in January and then 4.7 in April, next due July.
Will be having my second biopsy procedure in August, a year after the first.
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My level has remained at 4 for the last 3 tests. Biopsy probably after September, not a good experience!!
 
Last night was my first visit to the local support group. I spoke for quite a while with a guy who was diagnosed aged 53 with scores of 3+3 (same as me but 20y on). He opted for surgery and they discovered that the cancer was close to the wall and might have burst out. That makes me think that the operation may be better than active surveillance.

I have an appointment with the consultant on Sunday morning and I will see what he says.

Gordon
 
Rapido925M said:
He opted for surgery and they discovered that the cancer was close to the wall and might have burst out. That makes me think that the operation may be better than active surveillance
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That was pretty much my consultants description of mine and the reason he didn’t want to operate

I presume he meant the operation was more risky if close to breaking out 🤔👍
 
Rapido925M said:
Last night was my first visit to the local support group. I spoke for quite a while with a guy who was diagnosed aged 53 with scores of 3+3 (same as me but 20y on). He opted for surgery and they discovered that the cancer was close to the wall and might have burst out. That makes me think that the operation may be better than active surveillance.

I have an appointment with the consultant on Sunday morning and I will see what he says.

Gordon
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May i ask how old are you ?
 
DavidG58 said:
That was pretty much my consultants description of mine and the reason he didn’t want to operate

I presume he meant the operation was more risky if close to breaking out 🤔👍
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After removal you still got the option of RT , a friend had his out but some cells remained and he had 33 sessions of rt now his psa undectable
 
I insisted on annual tests from my GP's due to a significant family history of prostate cancer, as my father died of it and my younger brother had to have a prostatectomy about 7 years ago, which seems to have been successful in curing him.

So, just over two years ago what seemed inevitable happened, my PSA reading went up and so I went through the usual process with a suspicious area on the MRI being targeted by a biopsy. This came back as 3+3, with cancer present in both sides of the prostate. The NHS consultant was very keen to put me on active surveillance and said he would take a lot of persuading to give me the option of an operation and would only even consider doing so after a template biopsy involving a much larger number of needles. Given my fear that this could help the cancer to spread, and having seen my Dad die of this disease I was not happy with this and sought a second opinion from a private consultant.

Mainly due to my family history, the private consultant was more open to early intervention without additional biopsies and was one of only two people in the country who could offer a more advanced form of the robot assisted surgery. This is called the Retzius sparing method which removes the gland from behind and so causes less damage to the pelvic floor and usually means a quicker recovery, particularly with regard to urinary continence.

The upshot was that we raided the savings to have this done privately at a private hospital just off Harley street in London. The analysis of the prostate after removal showed that the cancer had been contained and not broken through the surface but was more advanced than the biopsy had shown. I think they said it was 3+4 so I was glad that I had taken early action. I did not have any post surgery complications and apart from a little very minor leakage for a few weeks, had full continence very quickly. I did suffer from ED as is common, and this took a long time to slowly improve and is not fully back to normal two years on, but I regard this as a small price to pay to hopefully not go through what my Dad did, but I have to be monitored every six months for the next few years before I can say that I have been cured.

I relate this story just to give an example of how you don't have to take the consultant's advice - it is your body and your health at risk, so I would get as much information as possible and ask if your consultant would be prepared to operate if that is what you decide is right for you. There are of course other treatment options such as targeted radiation, but I decided against this as apparently if it is not successful it causes a lot of damage to the prostate which makes subsequent surgery less likely to be successful. Hormone treatment is also used to suppress testosterone which fuels the cancer, but I believe this is generally mainly used for patients where the cancer has already spread, and can only slow it down, not cure it.

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DavidG58 said:
That was pretty much my consultants description of mine and the reason he didn’t want to operate

I presume he meant the operation was more risky if close to breaking out 🤔👍
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No

He had the operation and they sectioned the gland, finding the location of the cancer cells. I didn’t question his story but I thought that an MRI would show the position.

Gordon
 
Rapido925M said:
No

He had the operation and they sectioned the gland, finding the location of the cancer cells. I didn’t question his story but I thought that an MRI would show the position.

Gordon
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Best practice now is to use multi-parametric MRI scans where multiple scans with different settings, plus a final one after injection with a contrast enhancing substance, are combined to get a better image. This is an improvement on the older type of scan, but still cannot give a definitive diagnosis, though is used to target the biopsy with the help of a live ultrasound image, allowing less samples to be taken.

Incidentally, I believe that best practice for the biopsy is now to go in through the perineum rather from inside the rectum. This greatly reduces the chance of infection.
 
I had a phone check up from my urology cancer nurse this week, mostly a box ticking exercise for them I felt, but one thing came out that I am going to try

Sage tablets / capsules to counter the hot flush sweats that I getting a lot of now

I will report back on their effects 👍taking first one today
 
fred_jb said:
Incidentally, I believe that best practice for the biopsy is now to go in through the perineum rather from inside the rectum. This greatly reduces the chance of infection.
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This is the procedure I had last August and there was a Consultant up from Cambridge area to see it, as they were looking to introduce it there.
So I had four injections to numb the area and then fourteen biopsies as well. Twenty perforations of my perineum 😳

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DavidG58 said:
I had a phone check up from my urology cancer nurse this week, mostly a box ticking exercise for them I felt, but one thing came out that I am going to try

Sage tablets / capsules to counter the hot flush sweats that I getting a lot of now

I will report back on their effects 👍taking first one today
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I tried them for a couple of months but they didn't help at all. However you won't know until you try them.
 
DavidG58 said:
My discomfort felt like that had happened to me too, but until your comment I had thought they only made one incision with multiple entries 🤔😳
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Same here. I think they only entered in one or two locations each side, and angled the needle to hit the parts of the prostate they wanted to sample, aided by a live ultrasound scan. They go in at the sides to avoid the centreline for obvious reasons! 😱
 
fred_jb said:
Same here. I think they only entered in one or two locations each side, and angled the needle to hit the parts of the prostate they wanted to sample, aided by a live ultrasound scan. They go in at the sides to avoid the centreline for obvious reasons! 😱
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That is exactly how I believed the biopsy was performed when I had mine. The anesthetising injections were a bit sharp but there was nothing more than some discomfort otherwise. The 'glue' that was used to seal/protect the insertion points was more painful to remove than the actual procedure!
I had a female nurse 'holding my hand' whilst the biopsy was performed and some of the amusing chat that we had made the whole process much easier.
 
rod_vw said:
That is exactly how I believed the biopsy was performed when I had mine. The anesthetising injections were a bit sharp but there was nothing more than some discomfort otherwise. The 'glue' that was used to seal/protect the insertion points was more painful to remove than the actual procedure!
I had a female nurse 'holding my hand' whilst the biopsy was performed and some of the amusing chat that we had made the whole process much easier.
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like the one i had yesterday with the nurse as i was being positioned on the rt table i said ive never had my pants pulled down by so many pretty girls

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pagey said:
like the one i had yesterday with the nurse as i was being positioned on the rt table i said ive never had my pants pulled down by so many pretty girls
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For me the same , And then they left the room with meat loaf playing bat out of hell during the process , a 15 min well spent !
 
Hirsch said:
Sympathies to you and that is just what i wanted to avoid. I have little trust in others especially when it comes to my health. The description of active surveillance I was given did not fill me with confidence at all. Phrases like annual check, PSA tests and tell us how you are feeling.

I was 67 when diagnosed, coming up 68 now. If I had been 10 years older I might have gone for active surveillance. Not looking foward to RT but what can you do!

Good luck and best wishes.
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There is another lie being perpetrated as well as "Active Surveylance". I was told that they would use nerve sparing technology which would give me a 95% chance of full recovery of both continence and erectile function. Well it didn't for me and the other 4 people that I know personally have all lost these facilities. 5 failures out of 5 gives a success rate of zero in our small sample.
 
Folkranger said:
There is another lie being perpetrated as well as "Active Surveylance". I was told that they would use nerve sparing technology which would give me a 95% chance of full recovery of both continence and erectile function. Well it didn't for me and the other 4 people that I know personally have all lost these facilities. 5 failures out of 5 gives a success rate of zero in our small sample.
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A bit strong ,lie ,as you say a small sample . I am still getting side effects of RT /HT after five yrs , When i decided what treatment i wanted . you read up on it and take on what the oncologist says and then you decide , nothing is written in stone .
 
The general said:
A bit strong ,lie ,as you say a small sample . I am still getting side effects of RT /HT after five yrs , When i decided what treatment i wanted . you read up on it and take on what the oncologist says and then you decide , nothing is written in stone .
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I don't think lie is a strong word in this situation. If you're told the percentage success rate and the surgeon is quoting from a source other than his hospital's own known data then he is not telling the real truth about your chances at that hospital. I suspect that there are surgeons who are more skilled and therefore have outcomes that better match what should be expected. I doubt that misquoting outcomes would not go down well in the US where people are paying top dollar and are prepared to sue.
It's a whole other story in parts of the NHS where venerated consultants reserve their own skills for private work and simply put their name to work done under the NHS by lesser skilled practitioners and interns.

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Hirsch said:
Sympathies to you and that is just what i wanted to avoid. I have little trust in others especially when it comes to my health. The description of active surveillance I was given did not fill me with confidence at all. Phrases like annual check, PSA tests and tell us how you are feeling.

I was 67 when diagnosed, coming up 68 now. If I had been 10 years older I might have gone for active surveillance. Not looking foward to RT but what can you do!

Good luck and best wishes.
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It’s odd how we all come to our decisions differently. My logic was just the opposite, after looking at all the possible side effects of the treatments offered, and all were. Plus being advised it’s a slow growing cancer, I decided on active surveillance. I considered if I were 10 years older, 65 now I may opt for an intervention because I quite like how things function now down there at the moment and don’t want to risk it unless I have to.
My active surveillance is 12 week PSA tests and annual biopsies at the moment, reviewed in August after the biopsies.
 
Hettie's Crew said:
It’s odd how we all come to our decisions differently. My logic was just the opposite, after looking at all the possible side effects of the treatments offered, and all were. Plus being advised it’s a slow growing cancer, I decided on active surveillance. I considered if I were 10 years older, 65 now I may opt for an intervention because I quite like how things function now down there at the moment and don’t want to risk it unless I have to.
My active surveillance is 12 week PSA tests and annual biopsies at the moment, reviewed in August after the biopsies.
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Agree it is odd. I suppose what was in the back of my mind was a) my father developed PC and it spread to his bladder and b) I was advised mine was categorised as 'intermediate risk'. If they had said 'low risk' I would probably have made a different decision as I desperately wanted to go for active surveillance and get on with life.
 
I saw the "big man" at 9am on Sunday: very impressive. He has 25y of experience and certainly seemed to know his stuff.
His "recommendation" was AS because my problems are small (3+3, T2, N0). However, he is happy to agree to surgery as a possible solution to my slight incontinence along with the probable eradication of all cancer cells. We have agreed to another appointment before Xmas BUT he needs to carry out surgery before my 74th birthday (February). We were unaware that 73 is the cusp for this operation (but might explain why I was asked my age by The general).

HOWEVER, I need to weigh up the probability of life-long incontinence from the operation (20% he quoted for my factors) against how my current situation will evolve (it will not get any better if I do nothing ie AS). Once Feb arrives, the options will become HT, RT, CT. He reckoned 15% chance of damage to bladder and rectum from RT.

I have a holiday booked for the end of August and he has told me to ring him after that if I want the surgery and he will do it within 6-8 weeks. Decisions, decisions!

Gordon
 
Rapido925M said:
I saw the "big man" at 9am on Sunday: very impressive. He has 25y of experience and certainly seemed to know his stuff.
His "recommendation" was AS because my problems are small (3+3, T2, N0). However, he is happy to agree to surgery as a possible solution to my slight incontinence along with the probable eradication of all cancer cells. We have agreed to another appointment before Xmas BUT he needs to carry out surgery before my 74th birthday (February). We were unaware that 73 is the cusp for this operation (but might explain why I was asked my age by The general).

HOWEVER, I need to weigh up the probability of life-long incontinence from the operation (20% he quoted for my factors) against how my current situation will evolve (it will not get any better if I do nothing ie AS). Once Feb arrives, the options will become HT, RT, CT. He reckoned 15% chance of damage to bladder and rectum from RT.

I have a holiday booked for the end of August and he has told me to ring him after that if I want the surgery and he will do it within 6-8 weeks. Decisions, decisions!

Gordon
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(the options will become HT, RT, CT. He reckoned 15% chance of damage to bladder and rectum from RT). im having this treatment at the moment im 12 sessions in with 8 to go, i was told there was a possibility of your quote above but they were very small with most none at all, its strange how consultants come up with different scenarios. ps what is CT
 
pagey said:
its strange how consultants come up with different scenarios
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Yes without doubt , and that goes for different hospital trusts . Also ( happened to a friend as well ) when i had consultation with the surgeon( for removal ) and told him i am going down the HT /RT route i could tell by his tone he was ‘ disappointed ‘ 😢

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