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Secondary brain tumour from undiagnosed prostate cancer.

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User
Posted 04 Jun 2019 at 07:02

Morning, 

I am totally new to this and never normally post anything online anywhere so apologies if I am doing this wrong.

My Dad had a brain tumour removed in March and the results showed that it is likely to have come from prostate cancer. He didn't know that he had prostate cancer and an mri scan and ct scan before his brain operation did not find much evidence of disease. Since the brain tumour has been removed, he has had a blood test to check his levels of psa. I don't know exactly what they were but the doctor said that they weren't unduly high. He has also had a bone scan that was clear and recently got an mri of his prostate. On a chance visit to his own doctor, he was told that there is a small tumour in his prostate.

I guess my main concern is how long do you have to wait to see a consultant to discuss it? Also how long before they will start treatment? He has never met anyone to discuss this apart from the neurosurgeon in early April who told him that he had secondary cancer.

Thanks in advance, 

A worried daughter

 

User
Posted 06 Jun 2019 at 03:31
We now learn that pathology showed it was 'most similar to Prostate Cancer' and I wonder whether in fact it has spread from his Prostate and it could be coincidental that he had a small tumour in his Prostate.. I guess he is around 60 by which time about 50%+ men have some mainly insignificant tumour(s) in their Prostates. Dad doesn't seem to have had a biopsy of his Prostate from which to help define his staging and Gleason score and compare how close the type of cancer was to that in his head. I would have thought it would be worth doing a Biopsy of his Prostate to help establish whether the cancer in his Prostate was contained, and not likely to be be related to the cancer in his head but might be considered worth treating radically as a separate issue now it has been found. However, if there is good grounds to believe the head cancer came from the Prostate, it is possible that no radical treatment would be given to it directly but only systemically. I would sound out the consultant on this and because it is an unusual case, seek a second opinion.

Barry
User
Posted 05 Jun 2019 at 11:14
Was surprised to read that you think prostate cancer showing up in the brain isn’t rare. My GP, oncologist and I have been discussing whether mental health issues I am experiencing could be caused by metastasis in the brain. My oncologist is a professor in his field of PCa research and trials and says he had never heard of a case of it spreading to the brain.

Dave

User
Posted 05 Jun 2019 at 15:43
Once there’s a cancer diagnosis, NHS guidelines are that treatment should start within 63 days. It would be worth asking your dad’s GP to follow up and make sure that your dad is “in the system” for a urology appointment.

Best wishes,

Chris

User
Posted 05 Jun 2019 at 19:04
I also would have thought dad would be on HT and be regularly monitored by PSA tests. Let's hope the surgery completely removed all the cancer in his head because normal salvage photon RT follow up can be dangerous here (killed my cousin although her cancer was obviously not PCa). Should salvage RT be required to his head, I would explore the possibility of getting Proton Beam because it causes much less collateral damage. It may be that HT can restrain his PCa, at least for a time, wherever it is and remember it has already traveled a long way to settle in the head and who knows where potentially at other sites.
Barry
User
Posted 05 Jun 2019 at 23:53

Originally Posted by: Online Community Member
Any information/experience about brain metastases would be good to know... Especially if there is no other evidence of advanced prostate cancer.

It is certainly rare to have cerebral metastasis with a small prostate tumour and no other signs of advanced cancer; but this can also happen to women with breast cancer, where the primary tumour can be very small - indeed, I know of one where the primary tumour was never identified, despite widespread mets that (pathologically speaking) were breast cancer. And it can happen to people with melanoma.

I don't understand why he is not having any treatment for the prostate cancer; is he too unwell for treatment? There is evidence that treating certain prostate tumours does have an effect on metastasis, but I don't know whether that applies in the form of PCa that can metastasise in the brain. And as Old Barry says hormone treatment may well be useful.

 

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User
Posted 05 Jun 2019 at 10:39

Sorry to hear of his experience - it is quite possible to get secondary cancers while the symptoms from the primary site are negligible or non-existent, and while the brain isn't the first place that generally gets metastases from prostate, it certainly is not rare. Additionally, identification of a metastatic tumour does not always make identifying the primary tumour an easy task, sadly.

Prostate cancer is - relatively speaking - a slow cancer; time is not so pressing as for many other cancers. But having said that, by now, I think, he should have a fairly good idea what the strategy is, provided all the planned investigations have happened. Has he had a prostate biopsy yet?

Would your father have kept you in the picture?

If so, and as you are worried, the first thing to do is go with him to his GP and ask what's going on ...

User
Posted 05 Jun 2019 at 11:14
Was surprised to read that you think prostate cancer showing up in the brain isn’t rare. My GP, oncologist and I have been discussing whether mental health issues I am experiencing could be caused by metastasis in the brain. My oncologist is a professor in his field of PCa research and trials and says he had never heard of a case of it spreading to the brain.

Dave

User
Posted 05 Jun 2019 at 13:16

Originally Posted by: Online Community Member

On a chance visit to his own doctor, he was told that there is a small tumour in his prostate.

I guess my main concern is how long do you have to wait to see a consultant to discuss it? Also how long before they will start treatment? He has never met anyone to discuss this apart from the neurosurgeon in early April who told him that he had secondary cancer.

It's not clear to me what stage you are at with referral and diagnosis, but I'm guessing you've already been referred, and so this probably doesn't count as a new episode. In this case, you need to chase it up with the hospital - I'm guessing neurology needs to refer you to urology.

If it was your GP referring you to urology as a new episode, the max wait is 2 weeks, and treatment must start within 2 months, for a hospital to meet its targets, but I don't know how it works if the referral is from a different department. You could ask your GP to refer you - I don't know if they can do that if you are already under the care of a consultant, but no harm in asking.

User
Posted 05 Jun 2019 at 15:07

Originally Posted by: Online Community Member
Was surprised to read that you think prostate cancer showing up in the brain isn’t rare.

Apologies; 

I didn't mean to give the impression that it's common, it certainly isn't. But there's plenty of literature on it.

User
Posted 05 Jun 2019 at 15:43
Once there’s a cancer diagnosis, NHS guidelines are that treatment should start within 63 days. It would be worth asking your dad’s GP to follow up and make sure that your dad is “in the system” for a urology appointment.

Best wishes,

Chris

User
Posted 05 Jun 2019 at 15:44

Originally Posted by: Online Community Member
My oncologist is a professor in his field of PCa research and trials and says he had never heard of a case of it spreading to the brain.

Dave

 

I don't understand why he said that, we have had a few members here with mets in the brain and someone in our village had brain mets from PCa. Do you think he just meant he hadn't come across a case himself? 

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

User
Posted 05 Jun 2019 at 16:38
Mrlorry I don't think you are waiting for a referral to urology- either the neurosurgeon or GP should have referred dad to oncology.

Are you certain that they didn't start dad on hormones as soon as they got the pathology from the brain tumour? Would he have told you that he was having injections?

They may not need to biopsy the prostate if they have PCa cells from his brain.

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

User
Posted 05 Jun 2019 at 19:04
I also would have thought dad would be on HT and be regularly monitored by PSA tests. Let's hope the surgery completely removed all the cancer in his head because normal salvage photon RT follow up can be dangerous here (killed my cousin although her cancer was obviously not PCa). Should salvage RT be required to his head, I would explore the possibility of getting Proton Beam because it causes much less collateral damage. It may be that HT can restrain his PCa, at least for a time, wherever it is and remember it has already traveled a long way to settle in the head and who knows where potentially at other sites.
Barry
User
Posted 05 Jun 2019 at 21:46

Thank you for all the replies. My Dad was fit and healthy until March this year. He presented with numb fingers which led to a brain scan. Once the tumour was removed, the pathology showed that it was most similar to prostate cancer. This came as a big shock as he has not had any symptoms of prostate cancer.

The neurosurgeon told him that to have prostate cancer in his brain without having any other evidence of metastatic disease was very rare. I am interested to hear that other people have heard of it as every doctor that dad and I have spoken to, say that they have never heard of such a case. 

He isn't on any treatment for the prostate cancer at all. The only medication is iron tablets for anaemia. We have been at appointments with him throughout the process. The last hospital appointment was early April with a neurosurgeon and the only contact since has been by chance. He has had a prostate mri that has recently picked up a small tumour in his prostate but the hospital said that he has not been discussed at the Mdt meeting yet. 

Any information/experience about brain metastates would be good to know... Especially if there is no other evidence of advanced prostate cancer. 

 

User
Posted 05 Jun 2019 at 23:53

Originally Posted by: Online Community Member
Any information/experience about brain metastases would be good to know... Especially if there is no other evidence of advanced prostate cancer.

It is certainly rare to have cerebral metastasis with a small prostate tumour and no other signs of advanced cancer; but this can also happen to women with breast cancer, where the primary tumour can be very small - indeed, I know of one where the primary tumour was never identified, despite widespread mets that (pathologically speaking) were breast cancer. And it can happen to people with melanoma.

I don't understand why he is not having any treatment for the prostate cancer; is he too unwell for treatment? There is evidence that treating certain prostate tumours does have an effect on metastasis, but I don't know whether that applies in the form of PCa that can metastasise in the brain. And as Old Barry says hormone treatment may well be useful.

 

User
Posted 06 Jun 2019 at 03:31
We now learn that pathology showed it was 'most similar to Prostate Cancer' and I wonder whether in fact it has spread from his Prostate and it could be coincidental that he had a small tumour in his Prostate.. I guess he is around 60 by which time about 50%+ men have some mainly insignificant tumour(s) in their Prostates. Dad doesn't seem to have had a biopsy of his Prostate from which to help define his staging and Gleason score and compare how close the type of cancer was to that in his head. I would have thought it would be worth doing a Biopsy of his Prostate to help establish whether the cancer in his Prostate was contained, and not likely to be be related to the cancer in his head but might be considered worth treating radically as a separate issue now it has been found. However, if there is good grounds to believe the head cancer came from the Prostate, it is possible that no radical treatment would be given to it directly but only systemically. I would sound out the consultant on this and because it is an unusual case, seek a second opinion.

Barry
User
Posted 06 Jun 2019 at 06:54

Thanks again for replying. We as a family don't understand why he isn't getting any treatment either. He has been very ill since the tumour was removed (uti, pneumonia) but he has been home for a month now and things just seem to be going so slowly. In early April, the neurosurgeon said that a blood test would probably help confirm prostate cancer but as his levels were not particularly high, this seemed to confuse things further. Dad then had to wait another few weeks on a bone scan which came back clear. This then led to another few weeks of waiting for a prostate mri scan. That was just over two weeks ago and his own doctor confirmed at the beginning of the week that there is a small tumour in his prostate. The MDT meeting is next week now and he should be discussed at that apparently.

We are all so close as a family and the past two months waiting have been really tough as you can imagine. Maybe the wait is normal but it doesn't make it any easier on my Dad. 

I really appreciate people taking the time to reply. Thank you so much.  I should also add that my Dad is 73... Until this happened, he was still working full time and generally fit and well. 

 

Edited by member 06 Jun 2019 at 06:59  | Reason: Adding information

User
Posted 06 Jun 2019 at 08:58

Lyn,

I’m not sure if he meant personally; my GP had asked him to give me a brain scan, he told me he would do it if she insisted but he would rather not - one of the reasons he gave was that he didn’t know of any cases spreading to the brain. I’ll try and remember to ask when I see him next.

Dave

Edited by member 06 Jun 2019 at 09:01  | Reason: correcting autocorrect!

User
Posted 06 Jun 2019 at 09:30

Originally Posted by: Online Community Member
We now learn that pathology showed it was 'most similar to Prostate Cancer' and I wonder whether in fact it has spread from his Prostate and it could be coincidental that he had a small tumour in his Prostate.

I agree; this was why I asked about a biopsy; I'd have expected it to be done if active treatment was planned. As cancers advance, the pathology of metastases becomes less differentiated: sometimes if a met is found first, it isn't possible to identify the primary. The way your dad's cancer has been described suggests there is significant uncertainty. Let's hope the MDT brings some clarity.

 
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