Prostate cancer. A useful resource.

[seasideBill]

but I have not coped very well in my head with my diagnosis

Completely understand that, the anxiety and stress can make your life hell.

 

[Hirsch]

It’s odd how treatment varies so much between hospitals

It is isn't it!!

 

[rod_vw]

What blood test ? Since my biopsy I have had a body scan but no other tests

I asked my cancer nurse if they would be doing regular PSA checks, they said they don’t need to, they know the hormone treatment will shrink the cancer

I must have raised my eyebrows as she added you will have to trust me, we know, with a smile . Reassuring but blood test confirmation would be nice. I am hoping that by going on the trial there will be more checks

Hi DavidG58, don't take no for an answer, it's your body not theirs. If you want to know your PSA figures do like I did and speak to your GP, mine quickly organised a blood test when I explained my desire for an updated figure.

You can see my time line on the Macmillan Cancer Forum some of it does not offer comforting reading but at last I have dates for my treatment and can still take my holidays thanks to a capable appointments manager at the hospital.

 

[Coastal Cruiser.]

We're you advised what your blood test results were? I Assume they were checking PSA levels.?

It’s a strange one as PSA was 5.7 last year when they sent me for 2 scans it is now 4.4.
I do however have MGUS and symptoms of Multiple Myeloma and being monitored every 3 months for that so probably why they are keeping an eye on me.
Luckily I changed doctors and I cannot fault the new ones.

 

[DavidG58]

You can see my time line on the Macmillan Cancer Forum

I have followed your tine line, good to see things have progressed, I was told RT should be 4-5 months from start of hormone treatment but they knew it will be 7 months

I am hoping my acceptance on the trial will bring this forward and my monitoring will increase

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[The general]

I am now 28 days into my hormone treatment , the lower back issue my doctor has assured me must be muscular as cancer spread could not happen so quickly, good to know as I have been worried since my biopsy procedure in January where my prostate got prodded and poked, resulting in internal bleeding, cancer spread seemed inevitable to my unknowing head

What I am left with is a dull ache from my abdomen / prostate area, did / does anybody else have similar? I have not had a prostatectomy

The further in I get the less I am finding it all quite as scary , but I have not coped very well in my head with my diagnosis

Dont dont worry we all been thru those side effects , aching bones as said side effects differ between men ,you might feel depressed /weepy .bleeding from biospy normal , brown semen normal its all part of it , just go with the flow you will come out of it the other side OK like many many of us REMEMBER this is a very very slow growing cancer if caught early , my 6 month psa check in 3wks time i want a low low number !

 

[The general]

It’s odd how treatment varies so much between hospitals

I DEFFO agreed with that

 

[DJA]

Hi DavidG58

Interestingly after my Biopsy I was given 4 weeks of SCANS and given a number of Blood Test forms. Subsequently I have phone calls, now Annually, from the main Doctor at the Urology centre where scans were done and I use the Forms to enabling her to have Blood Data before her call. I am currently having Zoladex injections every 12 weeks and I understand that at some point, after maybe 3 years, they may stop the Injections and I think via blood test results keep an ey on how I am doing.

Since the treatment started my PSA value has dropped dramatically and has been below 0.10 for some time now.

Just to say that I should have said 4 weeks of Radiotherapy.

 

[Hagstrom]

I have read all 17 pages of this thread and am surprised at the number of male funsters affected by prostate problems.

I have had 2 lots of potato gun biopsies, 4 years apart, an MRI scan, told they were 80% sure there was cancer but because there was none found in the biopsies, benign enlargement was diagnosed. 4 to 5 nightly visits to the toilet make sleep difficult.

I am on the waiting list for Green Laser treatment to reduce the prostate size - anyone been down that route willing to share how it went?

 

[DavidG58]

I am on the waiting list for Green Laser treatment to reduce the prostate size - anyone been down that route willing to share how it went?

I can’t help with that treatment , but was surprised to that 80% of prostate biopsies come back negative

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[Hagstrom]

All the round 1 (10 on each side) biopsies tested negative for cancer but, after the MRI scan, the radiologists opinion was that she was 80% sure that there was cancer there. After the round 2 targeted (and informed by the scan,) biopsies, (again, 10 on each side), none were found cancerous.
Not sure why she was so sure that there was cancer there but I'm now being treated for benign prostate growth and awaiting it being green laser zapped.

 

[repairer]

I have read all 17 pages of this thread and am surprised at the number of male funsters affected by prostate problems.

I have had 2 lots of potato gun biopsies, 4 years apart, an MRI scan, told they were 80% sure there was cancer but because there was none found in the biopsies, benign enlargement was diagnosed. 4 to 5 nightly visits to the toilet make sleep difficult.

I am on the waiting list for Green Laser treatment to reduce the prostate size - anyone been down that route willing to share how it went?

Not heard of Green laser treatment, I was offered either “Steam” treatment (not too sure exactly what is involved, or TURP, I opted for latter as I was told it had a better chance of resolving my issues, recovery has been slower than expected, had op back end of Jan this year.

 

[The general]

I have read all 17 pages of this thread and am surprised at the number of male funsters affected by prostate problems.

Remember 1 in 8 will get /have prostrate cancer

 

[Hettie's Crew]

All the round 1 (10 on each side) biopsies tested negative for cancer but, after the MRI scan, the radiologists opinion was that she was 80% sure that there was cancer there. After the round 2 targeted (and informed by the scan,) biopsies, (again, 10 on each side), none were found cancerous.
Not sure why she was so sure that there was cancer there but I'm now being treated for benign prostate growth and awaiting it being green laser zapped.

My MRI scan showed an area of concern that had also been felt by DRE. Biopsies were taken and proved the area to be nothing other than a slight swelling, however, the other side that had no MRI image or change felt by DRE proved cancerous.

 

[Hettie's Crew]

I have been worried since my biopsy procedure in January where my prostate got prodded and poked, resulting in internal bleeding, cancer spread seemed inevitable to my unknowing head

This concerned me too, if the area of cancer had been pierced causing such bleeding surely that presents a risk of spread.

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[DavidG58]

My MRI scan showed an area of concern that had also been felt by DRE. Biopsies were taken and proved the area to be nothing other than a slight swelling, however, the other side that had no MRI image or change felt by DRE proved cancerous.

Good they took biopsies from both sides they did the same with me, checked both sides that is, got 12/12 positive for cancer where they suspected it , none from the other side

 

[The general]

This concerned me too, if the area of cancer had been pierced causing such bleeding surely that presents a risk of spread.

Put faith in the oncologist , they have dealt with this many a time ,i must admit i was concerned that i never had a bone scan and the fact i didnt have HT after treatment (RT ) as mentioned in earlier post i only ever had 3HT injections

 

[pagey]

Went for my chat with the oncologist today my blood test showed a figure of 0.6 down from 8.3 so now I'm ready for rt, I will have a scan for the radiologist to decide how they we deal with the rt and will start in around 4 weeks so next hormone injection on 03/05 then 20 visits over 4 weeks at St barts then I can go away in the van

 

[The general]

Went for my chat with the oncologist today my blood test showed a figure of 0.6 down from 8.3 so now I'm ready for rt, I will have a scan for the radiologist to decide how they we deal with the rt and will start in around 4 weeks so next hormone injection on 03/05 then 20 visits over 4 weeks at St barts then I can go away in the van

All sounds a good plan , that 20 fractions will go quick , you will feel part of a family in the treatment centre

 

[rod_vw]

Having spent weeks telephoning and trying to tie our local hospital trust down to dates for my RT I resorted to visiting them in person. Wow what a change, I now have dates in black & white!
Meeting with the team & others due for treatment 30th May, scan etc. with radiologists 7th June, off into Europe 17th June, return about 16th July and start treatment (twenty fractions) on the 18th July.
All of that was negotiated quickly and easily once I had made personal contact with the appointments team.
Should end RT 14th August and hope for minimum aftereffects so as to get back into Europe late August or early September for another five or more weeks.

Just been spending time under the new MAN TGE camper fitting a 4kW Eberspacher so the we have an alternative heating source (gas Truma 4e already fitted). Quite a bit of fuel plumbing and wiring to do yet but it's keeping me busy! The start of this project is on the Crafter TGE Forum if I can, I will complete that writeup when it's finished.

Moral of story, keep fit, keep busy and keep positive.

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[pagey]

Having spent weeks telephoning and trying to tie our local hospital trust down to dates for my RT I resorted to visiting them in person. Wow what a change, I now have dates in black & white!
Meeting with the team & others due for treatment 30th May, scan etc. with radiologists 7th June, off into Europe 17th June, return about 16th July and start treatment (twenty fractions) on the 18th July.
All of that was negotiated quickly and easily once I had made personal contact with the appointments team.
Should end RT 14th August and hope for minimum aftereffects so as to get back into Europe late August or early September for another five or more weeks.

Just been spending time under the new MAN TGE camper fitting a 4kW Eberspacher so the we have an alternative heating source (gas Truma 4e already fitted). Quite a bit of fuel plumbing and wiring to do yet but it's keeping me busy! The start of this project is on the Crafter TGE Forum if I can, I will complete that writeup when it's finished.

Moral of story, keep fit, keep busy and keep positive.

Agree mine moved on after a face to face yesterday when I asked for it to start tomorrow, like you I will hope to be in Europe early September

 

[The general]

I finished my treatment jan 2019 after 20 fractions , and then did 8 wk trip to Scandinavia that summer

 

[Rapido925M]

I have regular 6 monthly blood tests for diabetes etc and "mentioned" to the HCA in February that I hadn't had a PSA for 3y. "No problem, I'll add that now"
The results came back as 9.5 (expected <5) and I was told to wait a month before repeating it.
Came back as 9.5. "we'll get you an MRI". That took 4 weeks and came back with a PIRADS score of 4 (anything over 3 gets a biopsy).

So tomorrow I'm off to the seaside for this unpleasant-sounding procedure with fingers crossed for a good result.

But lets imagine that I'm positive: can someone please give me SIMPLE descriptions of likely next steps (I'm 73)? Apart from the prognosis, I'm particularly interested in how my villa-holiday booked for Corfu in mid-end August might be affected.

TIA - Gordon

 

[Nirvanauk]

Well in my case I had a biopsy within a few days of my results. Then I was put on HT injections every 6 months followed pretty quickly by the same RT that most on here had. It was just at the start of Covid’s first lockdown so pretty dismal as it was all masks, gowns and no talking.

 

[pagey]

I have regular 6 monthly blood tests for diabetes etc and "mentioned" to the HCA in February that I hadn't had a PSA for 3y. "No problem, I'll add that now"
The results came back as 9.5 (expected <5) and I was told to wait a month before repeating it.
Came back as 9.5. "we'll get you an MRI". That took 4 weeks and came back with a PIRADS score of 4 (anything over 3 gets a biopsy).

So tomorrow I'm off to the seaside for this unpleasant-sounding procedure with fingers crossed for a good result.

But lets imagine that I'm positive: can someone please give me SIMPLE descriptions of likely next steps (I'm 73)? Apart from the prognosis, I'm particularly interested in how my villa-holiday booked for Corfu in mid-end August might be affected.

TIA - Gordon

Biopsy not particularly nice but no big deal ok different hospitals do different things so can't really say with mine it's hormone inj every 3 months till the figures come down then radiotherapy it all depends what they find I was told it won't kill you go on holiday and we will deal with it when you come home i said what after 2.5 months no thanks do it now

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[Hettie's Crew]

I have regular 6 monthly blood tests for diabetes etc and "mentioned" to the HCA in February that I hadn't had a PSA for 3y. "No problem, I'll add that now"
The results came back as 9.5 (expected <5) and I was told to wait a month before repeating it.
Came back as 9.5. "we'll get you an MRI". That took 4 weeks and came back with a PIRADS score of 4 (anything over 3 gets a biopsy).

So tomorrow I'm off to the seaside for this unpleasant-sounding procedure with fingers crossed for a good result.

But lets imagine that I'm positive: can someone please give me SIMPLE descriptions of likely next steps (I'm 73)? Apart from the prognosis, I'm particularly interested in how my villa-holiday booked for Corfu in mid-end August might be affected.

TIA - Gordon

Likely next steps are difficult to predict because it depends on how your GP works and what Urology services you have in your area. There is quite a difference around the country regarding services and treatments across the UK, as has been highlighted in this thread.
I too casually asked for PSA to be added during my annual Cholesterol test, it came back as 4 and my GP immediately referred me to the Urologist, within a week or so I’d had the DRE, MRI and the Biopsy procedure at my local hospital, resulting in one biopsy out of the 14 being positive.
That gave me a Gleason score of 3.3 which is the lowest. Mr Smith the Consultant explained all of the treatment options and asked how I would like to proceed, together we chose surveillance of 12 week PSA tests and annual Biopsies as the initial way forward, next Biopsy due in August.
The biopsy procedure I had, the methods do vary across the country, was a little uncomfortable, having something that feels too large pushed up there but it was all numbed,
The best advice I can give you is what my Consultant said to me, read up, inform yourself and take charge of your treatment, don’t wait for services to call you, be proactive.

 

[DavidG58]

But lets imagine that I'm positive: can someone please give me SIMPLE descriptions of likely next steps (I'm 73)? Apart

Get the biopsy out of the way , apparently 4/5 come back negative for cancer

Good luck

 

[The general]

biopsy

Is the only way to know of its there .

 

[The general]

Biopsy not particularly nice but no big deal

Correct !
Heres a few tips while getting RT
wear lose fitting clothes ,less the better ,
, slip on shoes
Know where the nearest toilet is , take pee bottle and towel in car for when you drive home
Get a toilet card
Talk to other punters undergoing RT .
Get into a routine , i use to arrive early and have a sandwich and a bit of banter most punters liked to talk and also pass on tips
Try and go for walk before daily treatment
Have pee bottle near bed at nite .
At southampton general cancer patients got reduced parking charges ticket
Empty your bladder before you drink the water ( it helped me control my bladder before treatment )
Empty your bowels , otherwise you will get the red card
The whole daily treatment lasts around 15 mins usually a bit of music playing .
Dont worry if you pee yourself happened to me twice 3/4 wk during the day
All the best

 

[pagey]

Having spent weeks telephoning and trying to tie our local hospital trust down to dates for my RT I resorted to visiting them in person. Wow what a change, I now have dates in black & white!
Meeting with the team & others due for treatment 30th May, scan etc. with radiologists 7th June, off into Europe 17th June, return about 16th July and start treatment (twenty fractions) on the 18th July.
All of that was negotiated quickly and easily once I had made personal contact with the appointments team.
Should end RT 14th August and hope for minimum aftereffects so as to get back into Europe late August or early September for another five or more weeks.

Just been spending time under the new MAN TGE camper fitting a 4kW Eberspacher so the we have an alternative heating source (gas Truma 4e already fitted). Quite a bit of fuel plumbing and wiring to do yet but it's keeping me busy! The start of this project is on the Crafter TGE Forum if I can, I will complete that writeup when it's finished.

Moral of story, keep fit, keep busy and keep positive.

Update to my face to face meeting Tuesday had a phone call from barts yesterday afternoon inviting me to have a ct scan 03/05

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