PROSTATECTOMY TO METS IN RIBS IN 6 MONTHS

User

Posted 24 Sep 2020 at 14:23

Edited by member 30 Oct 2020 at 14:35 | Reason: Not specified

User

Posted 24 Sep 2020 at 15:09

Sorry to read that Ian, surprised they did the surgery prior to the bone scan presumably they thought with a relatively low PSA figure the cancer won't have spread.

Looking at this positively you have no cancer in the prostate because it's gone. The HT should flatten the bone mets and seminal vessel prior to the chemo which will shrink the tumours.

As far as your question about how long you've got no one knows. I was given 2 years in August 2018 and after HT, Chemo and RT my PSA is undetectable although I realise this won't last. There are many of us on here holding our breath until the next PSA test.
Good luck with your ongoing treatment.

User

Posted 24 Sep 2020 at 16:09

It is so rare these days that a man has RP without a bone scan - it seems your urology department was over-optimistic OR they didn't do the routine things because of Covid. To know that the op was unnecessary is a hard thing to come to terms with; John really struggled with that for a long time.

It is highly unlikely that the cancer moved from the prostate to a number of places in the ribs in the space of 6 months; PCa just doesn't move that fast. Perhaps if it had been one tiny met in your pelvis it would have been slightly possible, but not a number of mets.

How long have you got? Too early to say as much depends on your next PSA test and how the cancer responds to the hormone treatment but we have members here who have been on HT for 10 years plus, and even 15 years plus in a few cases.

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

User

Posted 24 Sep 2020 at 16:32

Hi
Thanks for the replies. At least the prostate and seminal vesicles are gone and can do no further damage, I do feel deep down that it had spread long before I even went to my GP in March, though I had no symptons of that spread at all i.e. bone pain etc. The consultant seemed confident about the next course of treatment and so do I at this point. I have started the hormone and know that will be starting to do something, which is a good feeling, though this is only the second day. It is a blow to find the surgery has not cured it, but reading on here and elsewhere there are so many options to manage this, and I hope for a good while longer, as we all do .

Ian

User

Posted 24 Sep 2020 at 16:34

I tend to agree with your consultant. More than likely they were already in existence before you had the op. A post op psa that high would indicate there was spread beforehand. Like Lyn says it's surprising a bone scan wasn't ordered pre op. My OH was told he would have one, not that they were expecting to find anything because of his low psa (3) just that it was protocol nowadays and they were done as a matter of course. Maybe not all areas? Don't know.

Sorry about the upgrade, it's a bit of a jump. HT is a bit like, how long is a piece of string. Some mens cancer becomes resistant sooner than others. It's very much a personal journey but I wish you many many years of successful treatment. X

User

Posted 24 Sep 2020 at 16:47

Many thanks

User

Posted 24 Sep 2020 at 16:48

Big mistake on your clinicians’ part that no bone scan was done. You would have had no need of surgery.

Get over your ‘How long have I got?’ anxiety. Every cancer sufferer here thought the same way to start with.

Make sure you are up to speed with any subsequent treatments and don’t rely slavishly, like I did, on ‘Doctor knows best’. There’s a lot of experience and brain power here, so let us know what’s happening and come back to us at any time!

Best of luck.

Cheers, John

User

Posted 24 Sep 2020 at 16:51

Thanks John, I will keep you informed

all the best to you too
Ian

User

Posted 24 Sep 2020 at 17:16

Ian

Sorry to hear your news , I was really hoping it was going to be a mistake with the test. When I look back I possibly had some indication of problems 13 years before DX.

Thanks Chris

User

Posted 24 Sep 2020 at 17:36

Ian, sorry to read your story. I agree with the others that the cancer had probably already spread by the time of diagnosis. Like you, I didn’t have a bone scan prior to surgery which now seems strange. You will find a lot of expertise and friendship on this forum.
The hormone therapy will knock any cancer cells right back.

Ido4

User

Posted 24 Sep 2020 at 17:39

Originally Posted by: Online Community Member

don’t rely slavishly, like I did, on ‘Doctor knows best’

I have just splurted tea down my blouse - when were you ever slavish, Bollinge??????

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

User

Posted 24 Sep 2020 at 18:00

Originally Posted by: Online Community Member

don’t rely slavishly, like I did, on ‘Doctor knows best’

I have just splurted tea down my blouse - when were you ever slavish, Bollinge??????

When I was on the doctor’s couch in my underpants with abdominal pain from humping Her Loveliness’s suitcases off a cruise ship in Venice and upstairs to a hotel in Lake Garda, and whilst he was palpating me, I asked him; “While you’re down there, can you do a DRE?”

”We don’t do that these days”, which came as a surprise to the urologist who first examined me following my PSA rise from 2 to 16.4 during the time the DRE was declined and the cancer had grown to stage T3a...

Edited by member 24 Sep 2020 at 18:23 | Reason: Not specified

User

Posted 24 Sep 2020 at 22:44

Originally Posted by: Online Community Member

My OH was told he would have one, not that they were expecting to find anything because of his low psa (3) just that it was protocol nowadays and they were done as a matter of course. Maybe not all areas? Don't know.

I wasn't offered a bone scan before my RARP. I asked at diagnosis appointment and was told by the nurse that a bone scan wouldn't be necessary in my case. (Oxford). Surprised to now hear that it's standard. Must be different in different areas?

_____

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

Prost was the strongest, so Prost ate Ectomy.

User

Posted 25 Sep 2020 at 00:28

Yes, another postcode lottery :-(

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

User

Posted 25 Sep 2020 at 04:51

How long has a bone scan been normal practice before RP ?

Had RP in 2014 without bone scan.

User

Posted 25 Sep 2020 at 06:56

Me too no bone scan, I thought they only did one based on PSA >20 or staging greater than 2 had to nag to get one when I had hip pain and small uspsa post op.

https://www.nice.org.uk/donotdo/do-not-routinely-offer-isotope-bone-scans-to-men-with-lowrisk-localised-prostate-cancer

Edited by member 25 Sep 2020 at 07:01 | Reason: Not specified

User

Posted 25 Sep 2020 at 17:06

When John was diagnosed in 2010, a bone scan was only routine if the PSA was greater than 10 and the Gleason was 8 or higher OR if there is reason to suspect bone mets. Not sure when it changed regionally but some areas still only do bone scans for what they deem 'high risk' patients.

The NICE guidelines are about who NOT to offer a bone scan to, rather than the other way round:

"Do not offer isotope bone scans to people with low risk localised prostate cancer"

Low risk is defined as

PSA <10 ng/ml and Gleason ≤6 and staging T1 to T2a

https://www.nice.org.uk/guidance/ng131/chapter/Recommendations#assessment-and-diagnosis

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

User

Posted 25 Sep 2020 at 23:39

In Durham , I was given a bone scan on the basis that the biopsy came back as Gleason 4.3. This was despite all other indications suggesting that the cancer was organ confined. I was told it was routine in cases where the Gleason score was greater than 3.4.

User

Posted 26 Sep 2020 at 10:32

I was never offered a Bone Scan Pre Op, I guess because I was Gleason 7 and they saw no need for one. If I had had one then surgery would possibly have been taken off the table ( pardon the pun ), not sure how that would have affected my outlook and treatment. Having had the surgery, I was upgraded to Gleason 9, and now post bone scan, advanced prostate cancer and mets to the ribs. If the operation had not gone ahead that upgrade would be unknown. All I can think is at least the primary source of the cancer has now gone, which the consultant talked about too this week saying some studies are suggesting outlook is better....we will see.

I would be interested to hear from anyone who is in a similar position to me with spread to the ribs and how you are getting on with the treatment to manage it all.
Ian

User

Posted 26 Sep 2020 at 13:54

Hi Ian,

My dad is in a very similar situation to you. He was diagnosed in April, after going to the doctors in March. Gleeson 9, PSA 49. Diagnosed with advanced but localised prostrate cancer after a bone scan came back clear (much to everyone’s relief). Had a RP and post op PSA was 8.5. A PET scan revealed spread to the spine, rib and pelvis. We were all devastated. Initially we thought it must have spread while he was waiting for the RP, which he had at the end of May but apparently a PET scan is much more sensitive than a standard bone scan so it’s more likely that it was already there. HT started at the end of July, first injection in the middle of August. My dad was doing really well until a couple of weeks ago and now he’s really struggling with the side effects of HT. He is having injections every 6 months not every 3 months, as outlined in in his treatment plan. We have been told this is due to trying to limit contact with the NHS. I don’t know if the dose is linked to the severity of the side effects. He had his first chemo session on Monday. Like you we don’t know what the future holds and can only hope for a good response to treatment.

Edited by member 26 Sep 2020 at 15:32 | Reason: Not specified

User

Posted 26 Sep 2020 at 14:02

Hi Soph
Thanks for your reply, your dad and I sound very similar. I was PSA 8.3 6 weeks after the OP, which went down to 7.5 last week. (still far too high ). I have only had a few days on hormones so no side effects as yet and no idea when the chemo will begin. I am trying to prepare myself for all the side effects as best as I can. I also have a kidney stone stuck in my ureter which has to be sorted before the chemo, so I have been led to believe. Say hi to your dad from me, we are sharing this together.

All the best
Ian

User

Posted 26 Sep 2020 at 15:40

I will do.

My dad didn’t have any side effects until a few weeks after his first injection. Luckily each one has passed, we’re just left with a lack of appetite due to everything tasting awful (I thought it was chemo not HT that impacted on taste but not in his case). Hopefully, this will pass too.

I think it is good practice with advanced cancer to start chemo within 12 weeks of starting HT.

Good luck!

Edited by member 26 Sep 2020 at 15:42 | Reason: Not specified

User

Posted 28 Sep 2020 at 15:58

Hi Ian,

my husband is 9wks post op today. His first and subsequent PSA is 0.2. Pre op he had a clear bone scan and a CT staging T2b, no EPE but PNI. His histology came back with EPE, positive margins and new staging T3a.

He has an appointment with oncologist in 2 weeks. So disheartening and worrying.

Wishing you well.

User

Posted 29 Sep 2020 at 12:28

Hi
It is worrying I know, I have started on hormone therapy and waiting for chemo . It is good your husbands bone scan was clear. he maybe will need some RT. I am still coming to terms with this cancer but determined to fight it, there are so many treatments available.

All the best

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PROSTATECTOMY TO METS IN RIBS IN 6 MONTHS

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