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Dad got the bad news yesterday

User
Posted 11 Nov 2025 at 06:18

Hi all

Heads all over the place but would be grateful of some advice. Dad was diagnosed yesterday with stage 4 locally advanced prostate cancer,which is also in the neck of the bladder. At first they thought bone scan was clear but after they doubled check,they found a little spot on his rib. Not in the lymph nodes. PSA was 198 at initial GP appointment but is now 387 as of yesterday (3 months between each appointment so almost doubled in that lenght of time) 

Hes started hormone treatment yesterday and is awaiting further appointments and tests etc with oncologist. Biopsy is schechuled to be done aswell,mostly to check gleason grade and the genetic side or something,not really sure what this all means as im finding it difficult to process everthing at the moment,getting hit with all these treatments, tests etc all at once,let alone diagnosis was a shock. Also been told its not curable,only manageable. Again dont understand what this means further down the line.Also, he is 64.

I would be grateful if anyone could explain to me what to expect in the upcoming months and what the general putlook could be ( best and worse case scenarios would be grateful) i know everyone is different but would be grateful to hear peoples experiences

User
Posted 12 Nov 2025 at 22:33

I mean sort of positive. A bit like falling down stairs and finding out you only broke one leg not two. Excuse my gallows sense of humour, we get like that on a cancer forum.

Let's elaborate. Cancer spreads by three methods.

1. Direct growth, so the prostate gets bigger and then starts pushing in to an adjacent structure, often the bladder.

2. Lymph fluid, cancer cells may enter the lymph fluid and this fluid travels through the body allowing for the possibility of cancer to grow anywhere that fluid goes.

3. Blood stream, similar to lymph fluid, it goes everywhere and can cause cancer to spread everywhere.

If it has not entered the blood stream or lymph system the cancer can not have spread far, this means targeted treatment by radiotherapy or surgery may kill all the cancer and you are cured.

If it gets in the lymph system, often some cells will grow in lymph nodes, and the implication is that cancer may develop anywhere in the body, so cancer in the lymph nodes is quite bad, but sometimes it only gets as far as one or two lymph nodes near the prostate, and it may not have spread further.

In the blood stream the flow is so fast that the cancer is unlikely to develop in an artery for example, but a cancer cell could be carried to any part of the body by the blood and develop in that part of the body. 

What we do know is that he has a bit of prostate cancer in one rib. It must have spread there some how. It probably wasn't by the lymph system as there is no evidence of cancer anywhere else in the lymph system. It definitely wasn't by direct growth, because a rib is a long way from the prostate. That means it probably spread by the blood system and that means it could potentially have spread to any area of his body.

Treating cancer in one place is relatively simple. Treating it in two places would also be relatively simple. The problem is once it is in two places you don't know how many more places it is lurking.

A bone scan is a relatively crude scan and not very accurate. Has he ever fractured a rib? That could lead to misdiagnosis of metastatic cancer.

A PSMA PET scan may be better at proving whether the rib lesion really is cancer, and may pick up other microscopic cancers in his body.

Has he been offered a PSMA PET scan? I don't know if that might provide enough evidence to change the treatment plan to curable rather than manageable. Though hardly anyone with a PSA of over 200 has not got cancer in multiple places.

Edited by member 12 Nov 2025 at 22:38  | Reason: Not specified

Dave

User
Posted 13 Nov 2025 at 12:51

They will only do a test if it may change the treatment plan. If the only thing putting him on the incurable (but manageable) path is that bone lesion, then the scan should be done. 

However I do not know if prostate cancer which has spread to the bladder is curable. As an amateur I would say "oh just blast it with radiotherapy, it'll be right". A professional would probably know that radiation in that place would have to pass through another organ and kill him in a few months (that is just an example, I know nothing about how safe radiation is to different parts of the body).

The thing is, that if they have already decided on grounds other than the bone lesion that he is incurable, there is no point in spending £5k on a test which won't change anything.

Another thing to add in to the equation is his current health other than cancer. If he is perfectly fit great, if he has heart disease, lung disease etc. then maybe curing the cancer is not going to extend his life anyway.

I would be asking, "if the bone lesion is not cancer would it change his treatment path?"

If the answer to that is "yes", I would ask "are you 100% sure it is cancer? And is there a test such as a PSMA PET scan to prove one way or the other"

I would be surprised if asking those two questions changed anything, they will have already asked themselves those questions, but by asking yourself you will know exactly where you stand.

Dave

User
Posted 13 Nov 2025 at 20:56

Thank you Dave i will find all this out at next appointment. He got a call back today with results from blood tests and the liver and kidneys are clear so no catheter for now,a little bit of positive news but still a lot more bumps on the road to come. Biopsy is on Tuesday (Gleason grade and for genetic testing)so will hopefully know more soon. 

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User
Posted 11 Nov 2025 at 09:29

Hi I'm sorry you find yourself here. I've been on this forum about five years. My scores were much lower, and thanks to radiotherapy I am probably now cured. I have seen posts with numbers this high before.

 

The most important thing to know is that Hormone therapy can suppress prostate cancer almost immediately and it can keep it suppressed for a number of years. That is what they mean by manageable. If it were confined in the prostate then they could target it and kill it, then he would be described as curable.

 

Though hormone therapy (HT) makes the cancer dormant, no one can ever predict for how long it will work, in the worst case it is about six months, in the best case it is 20 years. On average it is about 3 years. Some cancers have genes which make them respond better to different treatments I suspect the biopsy is to find if they can choose a better HT.

 

The outlook in the next few months is surprisingly good, the HT can have side effects I was on it for two years, it was not too bad.

 

Hopefully others will be along with more help. 

Dave

User
Posted 11 Nov 2025 at 10:22

Hi Dave thank you so much for your'e reply and explaining everything to me.It is much appreciated. Heads all over the place,made a mistake saying it was locally advanced,having check dads plan it is metatastic, what is the difference between locally advanced and metatastis? Also it states T4N0M1b,do you know what this also means? Sorry for all the questions but would be extremely grateful for the information.

User
Posted 11 Nov 2025 at 10:36

Hi HOF,

T4NOM1b means the cancer has spread from the prostate to other nearby organs. In your dad's case, the bladder. N0 means there is no lymph node involvement. M1b means the disease has metastasized to one or more bones. In your dad's case a rib.

Our site explains things well.

https://prostatecanceruk.org/prostate-information-and-support/just-diagnosed/advanced-prostate-cancer

Its lovely that you have found us to help your dad. You'll get lots of support here. ×

User
Posted 11 Nov 2025 at 10:53

Hi Adrian,thank you so much for explaining this to me,its much appreciated. Will have a look at that thread just now.

User
Posted 11 Nov 2025 at 13:52
Just to add that there are more advanced hormones and other potential down the line treatments available or in the pipeline, so Dad should be around for quite some time. Radiotherapy is sometimes possible to alleviate pain in specific areas of bone, should a few hot spots develop.
Barry
User
Posted 11 Nov 2025 at 14:52

Hi Barry,thank you so much for youre reply and giving me some positivity and hope going forward. It is much appreciated.

User
Posted 12 Nov 2025 at 21:07
Hi again,sorry for all the questions but would appreciate one last bit of advice. Ive been told by a few people ( not experts ) that it is a positive sign that cancer hasnt spread to lymph nodes,is there any truth in this?
User
Posted 12 Nov 2025 at 22:09

Hi again.

It's a negative sign when there is any distant spread to organs, lymph nodes or bones, but it's positive news when it hasn't spread to all three. 

Unfortunately, I think I'm right in saying that generally the prognosis is poorer when it's in the bones than the lymph nodes. However, other factors also affect prognosis, such as the aggressiveness of the cancer, that is why they will test your dad's Gleason score. Other factors include age, general health, extent of the disease and how it responds to treatment.

With all these variables, the outcomes for those with T4 prostate cancer can vary enormously. There are a few on the forum who have a T4 staging. Some may pop along and contribute.

Edited by member 12 Nov 2025 at 22:17  | Reason: Additional text

User
Posted 12 Nov 2025 at 22:33

I mean sort of positive. A bit like falling down stairs and finding out you only broke one leg not two. Excuse my gallows sense of humour, we get like that on a cancer forum.

Let's elaborate. Cancer spreads by three methods.

1. Direct growth, so the prostate gets bigger and then starts pushing in to an adjacent structure, often the bladder.

2. Lymph fluid, cancer cells may enter the lymph fluid and this fluid travels through the body allowing for the possibility of cancer to grow anywhere that fluid goes.

3. Blood stream, similar to lymph fluid, it goes everywhere and can cause cancer to spread everywhere.

If it has not entered the blood stream or lymph system the cancer can not have spread far, this means targeted treatment by radiotherapy or surgery may kill all the cancer and you are cured.

If it gets in the lymph system, often some cells will grow in lymph nodes, and the implication is that cancer may develop anywhere in the body, so cancer in the lymph nodes is quite bad, but sometimes it only gets as far as one or two lymph nodes near the prostate, and it may not have spread further.

In the blood stream the flow is so fast that the cancer is unlikely to develop in an artery for example, but a cancer cell could be carried to any part of the body by the blood and develop in that part of the body. 

What we do know is that he has a bit of prostate cancer in one rib. It must have spread there some how. It probably wasn't by the lymph system as there is no evidence of cancer anywhere else in the lymph system. It definitely wasn't by direct growth, because a rib is a long way from the prostate. That means it probably spread by the blood system and that means it could potentially have spread to any area of his body.

Treating cancer in one place is relatively simple. Treating it in two places would also be relatively simple. The problem is once it is in two places you don't know how many more places it is lurking.

A bone scan is a relatively crude scan and not very accurate. Has he ever fractured a rib? That could lead to misdiagnosis of metastatic cancer.

A PSMA PET scan may be better at proving whether the rib lesion really is cancer, and may pick up other microscopic cancers in his body.

Has he been offered a PSMA PET scan? I don't know if that might provide enough evidence to change the treatment plan to curable rather than manageable. Though hardly anyone with a PSA of over 200 has not got cancer in multiple places.

Edited by member 12 Nov 2025 at 22:38  | Reason: Not specified

Dave

User
Posted 12 Nov 2025 at 23:06

Hi thank you both for the replies,as far as im aware there is no PET scan as of yet, Initially they thought bone scan was clear but after going over it again they found a tiny hot spot on rib. Im sure they said they were hopeful that treatment may zap that spot on rib,not sure of i picked them up wrong because of the shock though. How would they know if its 100% cancer on that rib bone? Is that what the PET scan does? Unsure if dads had injury on rib before ill ask tomorrow. Also,what treatment would be required to zap the hot spot on rib? Im sure they said radiotherapy would be an option if the tablets he is set to go on doesnt work but im sure the radiotherapy is only confined to the prostate,i'll double check tomorrow and update if im wrong,i struggled to take all the information in. Again,thanks for the replies,much appreciated.

User
Posted 13 Nov 2025 at 00:20

If you were to go on the internet and look for an image of prostate cancer bone scan, you would see what looks like an x-ray of the entire skeleton. For some the image is that simple, however for others the image will have one, two or hundreds of black dots. These are caused by the bone constantly repairing it self because it is constantly being damaged by cancer cells. If there are more than a few dots then it is almost certainly cancer, or you've been in a boxing match with Mike Tyson. If there is just one dot, it does give rise to the possibility that it is just a bone injury being repaired.

Now the people who interpret these scans might be able to tell if a dot looks more like cancer than an old broken bone, so don't hold out much hope that it is not cancer.  Bone scan costs the NHS about £1000 they are happy to do loads of those.

A PSMA PET scan, can detect the actual prostate cells, his prostate should only have these in it, and there should be none anywhere else in his body. So if a PSMA PET scan shows the same spot on the rib has prostate cells in it, you know it must be cancer, the scan may also show prostate cells in other organs which a bone scan can't do. Problems with the scan are that about 10% of men have prostate cells that do not show up in that type of scan so it is useless on those men, also the scan costs about £5000 so they are not so keen on using it.

My guess is that the PSA being so high, is such a strong predictor of metastatic spread that they don't think a PSMA PET scan is necessary. However with only one hotspot on the bone scan, that is quite weak evidence for metastatic spread. Remember I and everyone else on this forum are amateurs, the experts are far more likely to judge these things better than us.

HT should suppress any cancer growth anywhere in the body, so that is the treatment to start with. Surgery on the rib, or prostate which is already in the bladder neck would be impossible. Radiotherapy to the prostate would kill* any cancer there, radiotherapy to that rib would kill* any cancer there, and if he absolutely did not have any cancer cells anywhere else he would be cured.

*In reality radiotherapy kills all the cancer cells only in about 90% of men. So some men are never cured even though the cancer has been well targeted. In addition another 20% of men have metastatic cancer which is not detected in the early stages, the prostate can be cured, but the other cells develop in to secondary cancers years later. Hence only about 70% of prostate cancers are cured, unless caught very early.

If you can set your mobile phone to record, then take it to the meeting and ask if you can record it. That way you can replay parts you may have missed.

Edited by member 13 Nov 2025 at 00:23  | Reason: Not specified

Dave

User
Posted 13 Nov 2025 at 07:34

Thank you so much for your information Dave,ill be sure to ask them about the possibilty of a PET scan

User
Posted 13 Nov 2025 at 08:55

Dave, as usual, explains things so well, I wish my consultant had been so clear and articulate.

I also had the same thoughts as him on the hot spot on your dad's rib.

Recently one of the lads, DaveyH, had a  single hot spot on his spine. He later wrote:

With me the bone scan found a “hot spot” on my spine lumber 2, potential metastasis. I was then sent for a PSMA PET scan about 3 weeks later to confirm or otherwise. Then another 2 to 3 weeks to get the result. In my case the PET scan didn’t find any mets. The bone scan gave a false positive on a degenerative condition, probably a bit of arthritis. It was a massive relief, but I went through around 5 to 6 weeks of purgatory thinking my prostate cancer had spread. 

The big difference, however, is that your dad's PSA is much higher than Davey's was, but your dad also has spread to to the bladder neck, which I suppose could account for his high PSA level.

When I had my CT scan. They found, 'indeterminate lytic areas' all over my pelvis, hips and and both legs. Fortunately, after a bone scan, a couple of weeks, later they put these suspicious areas down to arthritis and degenerative wear and tear. I never had a PMSA scan. 

 

User
Posted 13 Nov 2025 at 10:30

Thank you so much for the reply,so do you think it is worth mentioning to them about a PET scan at his next appointment to confirm the single hotspot on his rib. Again,thank you so much for the information it is much appreciated.

User
Posted 13 Nov 2025 at 10:59

Hi.

As Dave said, none of us are medically trained. We just do our best, to help people by using what we've learned, and ours and others past experiences. 

I'd certainly question whether they can confirm that the the hot spot on your dad's rib is definitely cancerous.

User
Posted 13 Nov 2025 at 11:13

Thank you Adrian,much appreciated. I will be sure to bring this up at next appointment.

User
Posted 13 Nov 2025 at 12:51

They will only do a test if it may change the treatment plan. If the only thing putting him on the incurable (but manageable) path is that bone lesion, then the scan should be done. 

However I do not know if prostate cancer which has spread to the bladder is curable. As an amateur I would say "oh just blast it with radiotherapy, it'll be right". A professional would probably know that radiation in that place would have to pass through another organ and kill him in a few months (that is just an example, I know nothing about how safe radiation is to different parts of the body).

The thing is, that if they have already decided on grounds other than the bone lesion that he is incurable, there is no point in spending £5k on a test which won't change anything.

Another thing to add in to the equation is his current health other than cancer. If he is perfectly fit great, if he has heart disease, lung disease etc. then maybe curing the cancer is not going to extend his life anyway.

I would be asking, "if the bone lesion is not cancer would it change his treatment path?"

If the answer to that is "yes", I would ask "are you 100% sure it is cancer? And is there a test such as a PSMA PET scan to prove one way or the other"

I would be surprised if asking those two questions changed anything, they will have already asked themselves those questions, but by asking yourself you will know exactly where you stand.

Dave

User
Posted 13 Nov 2025 at 14:19

Thank you i will be sure to ask them if the hot spot on rib or the neck off the bladder is classing him as incurable. As to health wise,he is super fit,fitter than me,only just months ago we were climbing multiple munros.No heart disease lung disease etv. He still feels just now he is capable of still doing munros,im hoping that this is a good sign and the treatment doesnt affect this. They did mention possible radiotherapy but if i remember correct this is only confined to the prostate and i beleive its only if/when the hormone tablets/injections dont work. I'll double check this when he goes to Oncologist. Thanks again for the advice.

User
Posted 13 Nov 2025 at 19:49

Being in good general health is good news. HT reduces testosterone and that tends to result in lower strength, it can cause hot flushes like the menopause, exercise in considered a good way of avoiding the worst effects of HT.

The usual way to administer radiotherapy (RT), if it is being done with curative intent, is to start the patient on HT for six months, then do about 30 sessions of RT over about 6 weeks, but keeping the patient on HT for another two years. 

If incurable then the treatment is HT then moving to stronger HT drugs, then trying chemotherapy, and once all these have failed, using RT as a way to control pain in the final few months of life, this would be referred to as palliative RT.

Since I was treated 7 years ago, treatment for incurable people has become more intense. Now it can include RT and chemo, much earlier on rather than waiting for each treatment to fail and trying a stronger one. Some evidence, says do all treatments together earlier on, and this will knock the cancer so hard it will take a long time to return. I think the phrase for this more aggressive early approach involving HT, chemo and RT is called triple therapy.

Definitely the next thing is to find out for sure if he is classed as incurable and if any tests could be done which may change that diagnosis. 

Then if he is curable, if the plan is RT with curative intent, (usually after six months HT).

If he is incurable, whether the plan is a slow progression to stronger drugs, eventually leading to palliative care, or a hit it hard and early approach, though eventually leading to the same outcome but hopefully later on.

I have to say with a high PSA and a doubling time of three months, I would be surprised if he is curable, but there is still hope.

 

Dave

User
Posted 13 Nov 2025 at 20:56

Thank you Dave i will find all this out at next appointment. He got a call back today with results from blood tests and the liver and kidneys are clear so no catheter for now,a little bit of positive news but still a lot more bumps on the road to come. Biopsy is on Tuesday (Gleason grade and for genetic testing)so will hopefully know more soon. 

 
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