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Dad mid diagnosis… zero clarity

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User
Posted 21 Jun 2024 at 15:08

Hi all.. not sure what I’m really looking for other than reassurance which most likely can’t be given!

My dad was admitted to hospital 3 weeks ago after a blood test revealed a PSA of 800 (had gone to dr for something else but hadn’t had bloods done for years). Initially kept in so he could have MRI the next day but of course they couldn’t fit him in and he was discharged after 24 hours. He had his prostate and spine MRIs 2 weeks ago and despite being told he would get the results in 7-10 days, they have decided to withhold these as he then had a bone scan 1 week ago (theory being all 3 would be discussed in 1 appt).

We are now 1 week on from the bone scan and no one is telling us anything. Radio silence. A letter was received today for a biopsy which we presume was scheduled when he was originally admitted but again we are just guessing.

My dad does not want to push for answers, most likely burying his head in the sand and keeps saying that “no news must be good news” on the basis that surely if it was THAT bad they would have told him by now but my hope is slowly fading.

Does anyone have any similar experience that could help shed some light?? Or will we just be left guessing until they finally decide to get in contact 😔

User
Posted 21 Jun 2024 at 19:57
I completely understand and we all start off thinking exactly the same way "this is CANCER, why are they not treating me urgently" because the word CANCER is so fraught with emotions and always gets the headlines.

Only when you get into the treatment plan do you realise just how many people are in the same queue. On my salvage radiotherapy thread I explained that just in my local hospital they have 5 machines and a scanner and each machine handles 50 people a day!

When I had my radical prostatectomy last year, I was one of 7 people in line for their ops that day, and that was just one operating theatre.

I'm sure he is in good hands and will get the treatment that he needs. Take care of each other and good luck.

User
Posted 21 Aug 2024 at 10:35

Thank you Steve. We are a very laid back family (my dad literally doesn't seem to care if his appt is next month or next year!) so we aren't getting overly stressed, just when people ask me how he's getting on and I tell them he still hasn't actually sat down for a formal meeting they're so shocked! It's my personal outlook that if it were THAT bad (months to live) he would know by now... but I've definitely learnt not to assume anything!

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User
Posted 21 Jun 2024 at 16:35
I wish there was something positive I could say but unfortunately there is nothing we can say until he has the results of all of the scans/tests.

The biopsy is, as you say, just the next step and you may not hear anything until they have the results of that to provide the complete diagnosis with regards to the grading of the cancer.

Having said that, a few weeks of delay is not going to make any difference to the progression of the cancer as PCa is slow growing, and the treatment options are quite extensive, well developed and very successful in the majority of cases.

I would encourage him to discuss hormone therapy with his doctor/consultant as this can normally be started straightaway and is beneficial in many cases towards the final treatment plan.

User
Posted 21 Jun 2024 at 16:42

Thank you, yes he started the injections the day he was admitted so assume that will be ongoing.

Will continue to keep my fingers crossed... just feels so painfully slow when peoples emotions are so heavily involved.

User
Posted 21 Jun 2024 at 19:57
I completely understand and we all start off thinking exactly the same way "this is CANCER, why are they not treating me urgently" because the word CANCER is so fraught with emotions and always gets the headlines.

Only when you get into the treatment plan do you realise just how many people are in the same queue. On my salvage radiotherapy thread I explained that just in my local hospital they have 5 machines and a scanner and each machine handles 50 people a day!

When I had my radical prostatectomy last year, I was one of 7 people in line for their ops that day, and that was just one operating theatre.

I'm sure he is in good hands and will get the treatment that he needs. Take care of each other and good luck.

User
Posted 21 Jun 2024 at 21:20

Intheclouds9, his main treatment will be hormone therapy, and it sounds like they've started that in the form of the injections, which should bring his PSA down quickly.

The scans might show other things which need attention too.

Oncologist may suggest chemo and/or some additional hormone therapy tablets, either now or in the future.

But he's on the main treatment already, and probably nothing else is very urgent just now.

User
Posted 21 Aug 2024 at 02:51

@geometry dash subzero

My reaction was pretty similar, and not at all what I had previously imagined my reaction to cancer might be. Others who knew me said I treated it just like a project at work to be solved. 

Edited by member 22 Aug 2024 at 02:36  | Reason: Not specified

User
Posted 21 Aug 2024 at 08:54

Thank you all.

His urology consultant got in touch after his biopsy (2nd July) and confirmed spread to hips and spine but didn't seem to display any sort of urgency or stress which seems really odd. Still waiting on his big oncology appt to confirm all of the technical stuff and treatment plan (5.5 weeks away lol) can't work out if the NHS is so broken that this is perfectly normal for a very serious situation or if the complete lack of urgency means it's all ok!!! Currently sat at 12 weeks post initial concern/PSA test.

User
Posted 21 Aug 2024 at 10:32
Although it all sounds serious and not wishing to make light of it, but this kind of cancer is generally slow growing and not one of the super aggressive ones such as breast cancer. So even over say a 6 month period there is unlikely to be any major changes.

In addition, quite often the oncologist will want to wait until any cancer mets become visible to the scanner so that the treatment will have specific targets to aim at. That may or may not be the case here but when he gets to see the oncologist then it will become clearer. But please rest assured that nothing is going to change dramatically over several weeks or a few months.

User
Posted 21 Aug 2024 at 10:35

Thank you Steve. We are a very laid back family (my dad literally doesn't seem to care if his appt is next month or next year!) so we aren't getting overly stressed, just when people ask me how he's getting on and I tell them he still hasn't actually sat down for a formal meeting they're so shocked! It's my personal outlook that if it were THAT bad (months to live) he would know by now... but I've definitely learnt not to assume anything!

User
Posted 30 Aug 2024 at 08:15

Hi it’s really frustrating isn’t it my dads recently been diagnosed to so sad he’s been through enough his bone scan was clear waiting for ct scan hoping that’s clear if you want to talk message me 

 
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