Still in shock

User

Posted 17 Aug 2020 at 18:14

My hubby has just been diagnosed with prostate cancer that has spread to his bones, despite having none of the classic symptoms.

He has had on-going lower back pain since before Christmas 2019 that was diagnosed by our GP as a disc/sciatica problem, and was sent away with painkillers and told to come back in 6 months if it didnt improve. It didn't, so we paid for an MRI scan that revealed an anomaly in the bone. This led to a blood test which confirmed the diagnosis.

His PSA count was almost 5000ng/ml, although on examination, the prostate gland wasn't anywhere near as enlarged as the consultant thought it should be with a count that high.

A bone scan is booked in for later this week, a biopsy was also planned but put back 3 weeks due to current medication. Scans of his chest and abdomen are being organised in the next week or so.

I'm worried that things are moving so quickly as the Drs are concerned about how bad it is, or is this the normal timeframe for these kind of follow up tests/scans?

Has anyone else had such a high PSA level?

I'd be grateful for any input, we are still in shock - 2 weeks ago we thought he might be facing a possible hip replacement!!

Thanks

User

Posted 18 Aug 2020 at 18:25

Originally Posted by: Online Community Member

I was really cross that they didnt call him in at that point to break the news face to face, or at least check he wasn't alone.

I had a biopsy in late Feb 2020. Was told the results would be about 14 days.

Day 10, Friday evening 1757 I got a phone call giving me the time and date for an oncology appointment.

"So I have got cancer then!" I replied. 😢 "I haven't had my biopsy results yet!"

I don't think the person on the other end knew quite what to say. That was a bit of a system failure, but thankfully I got another call about 20 minutes later from a urology nurse who'd been given the job of picking up the dropped ball. Made an appointment to give me my results on Monday, but didn't think to tell me "don't worry, it's treatable" so I had a whole weekend of "am I being given a death sentence?"

That was a bit brutal, but it made all the treatment options look less awful.

Apart from those screwups though, my care has been excellent.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 17 Aug 2020 at 20:20

Hi Shediain,

My husbands diagnosis 2 years ago (Gl 9 Metastatic, PSA 320 ) was a complete shock to us too. No symptoms , then a pain in his side for a few days, (prostrate pushing on kidney ) Once this was found it was a matter of days before scans etc..were performed . All I can say is two years on it does get a little easier. My hubbie had chemo, then on to Lupron and Caxodex (didnt work ) his PSA came down to 1.5 from 320 but now back up to 15 !!

Being the wife, I have taken it upon myself to research every thing I can about this cruel disease. The more you know the more you understand. So I can ask more and even challenge our Oncologist if we are not happy with whats been offered.

I do hope that you get good results from your planned scans, its no point saying 'dont worry'as two years on I am still worried' just try and think positive ,it does help.

Are you in the UK ?

User

Posted 17 Aug 2020 at 20:21

This is an extremely high PSA so the doctors are moving quickly; they will have strong suspicions that the cancer is in more than just that one spot on the spine.

Having said that, it isn't the highest PSA we have seen here - Trevor Boothe was diagnosed with a PSA of 13,000 and my husband's urologist had a patient whose PSA was 160,000.

In the circumstances, if the bone scan shows clear bone mets they may decide not to do a biopsy and just start him on the hormone treatment without any further delays.

How old is he?

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

User

Posted 18 Aug 2020 at 14:25

Another GP making a dx with no scans etc to back it up. When are they going to start considering that aching around the back etc could be symptomatic of PCa.

Sorry you find yourself here and sorry for the rant about the GP but so many men have not had a proper dx due to poor GP knowledge.

Hopefully once they have done further tests etc you will have a clearer idea about what’s happening and you will feel better about it all

Brian

User

Posted 18 Aug 2020 at 22:17

Originally Posted by: Online Community Member

Wow! Alex, that must have been one hell of a shock!

Glad to hear everything else is going ok though. Did your treatment continue throughout lockdown?

Just a thought about the biopsy, do they give any kind of sedative? not a general, but maybe light sedation of some kind? Can you request one if not?

Think having all the examinations is freaking the old man out a bit, but i know he's REALLY not looking forward to that!

Shock - yeah. You should see my stress chart for that weekend.

My surgery was delayed twice because of lockdown. But in the end that only cost me about two months. I was offered bicalutamide, but declined it, accepting active surveillance instead for a period of time. I wasn't expecting a delay of many months and with fairly contained T2aN0Mx didn't fancy hormone treatment unless really needed. If the delay would have gone on much longer I might have eventually gone with bicalutamide. It just didn't seem worth the hassle for what I thought would only be a few weeks. Thankfully I wasn't far wrong and had my op mid-June.

In the UK I believe prostate TRUS biopsies have local anaesthetic. I certainly had an injection in each side of the gland before the samples were taken. My wife tells me that in Poland - certainly a few years ago (her dad, step-dad and uncle) - biopsies were done without. I imagine this is rather painful and seems pretty barbaric to me to save a few quid.

The biopsy itself is not too bad, but he will need to be kind to himself for a few days afterwards. Not too much sitting in one position and certainly no long bike rides for a week or two (don't ask me how I know that one). Walking should be fine though.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

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User

Posted 17 Aug 2020 at 20:20

Hi Shediain,

I do hope that you get good results from your planned scans, its no point saying 'dont worry'as two years on I am still worried' just try and think positive ,it does help.

Are you in the UK ?

User

Posted 17 Aug 2020 at 20:21

This is an extremely high PSA so the doctors are moving quickly; they will have strong suspicions that the cancer is in more than just that one spot on the spine.

Having said that, it isn't the highest PSA we have seen here - Trevor Boothe was diagnosed with a PSA of 13,000 and my husband's urologist had a patient whose PSA was 160,000.

In the circumstances, if the bone scan shows clear bone mets they may decide not to do a biopsy and just start him on the hormone treatment without any further delays.

How old is he?

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

User

Posted 18 Aug 2020 at 14:25

Another GP making a dx with no scans etc to back it up. When are they going to start considering that aching around the back etc could be symptomatic of PCa.

Sorry you find yourself here and sorry for the rant about the GP but so many men have not had a proper dx due to poor GP knowledge.

Hopefully once they have done further tests etc you will have a clearer idea about what’s happening and you will feel better about it all

Brian

User

Posted 18 Aug 2020 at 17:37

Thank you for your posts.

It's such a scary time, but like starskycat, I've done lots of reading and research into this so i can try and get a handle on things! Try being the operative word. . . .

We are in the UK, and he's 63. I've not seen those high PSA scores anywhere else LynEyre, so thank you for that nugget of info.

Our GP practise merged with another one about 18 months ago, and we never get to see the same doctor twice like we used to. On the whole, they have been good, although one GP in the practise (not the one hubby had seen previously) called him told him the bad news over the phone! I was really cross that they didnt call him in at that point to break the news face to face, or at least check he wasn't alone.

I'm being very upbeat and positive but have had a few wobbles. I'm sure there will be harder days to come, but getting this support and real life person info is already helpful.

User

Posted 18 Aug 2020 at 18:25

Originally Posted by: Online Community Member

I was really cross that they didnt call him in at that point to break the news face to face, or at least check he wasn't alone.

I had a biopsy in late Feb 2020. Was told the results would be about 14 days.

Day 10, Friday evening 1757 I got a phone call giving me the time and date for an oncology appointment.

That was a bit brutal, but it made all the treatment options look less awful.

Apart from those screwups though, my care has been excellent.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User

Posted 18 Aug 2020 at 20:22

Wow! Alex, that must have been one hell of a shock!

Glad to hear everything else is going ok though. Did your treatment continue throughout lockdown?

Just a thought about the biopsy, do they give any kind of sedative? not a general, but maybe light sedation of some kind? Can you request one if not?

Think having all the examinations is freaking the old man out a bit, but i know he's REALLY not looking forward to that!

User

Posted 18 Aug 2020 at 22:17

Originally Posted by: Online Community Member

Wow! Alex, that must have been one hell of a shock!

Glad to hear everything else is going ok though. Did your treatment continue throughout lockdown?

Just a thought about the biopsy, do they give any kind of sedative? not a general, but maybe light sedation of some kind? Can you request one if not?

Think having all the examinations is freaking the old man out a bit, but i know he's REALLY not looking forward to that!

Shock - yeah. You should see my stress chart for that weekend.

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

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