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What would you do ?

User
Posted 11 Jun 2018 at 11:29

Please look at my profile and I would welcome any comments.

My MRI results are back which confirms that there is a benign prostatic hyper trophy volume 85ml. No significant sign of prostate cancer is indentified on T2 weighting, diffusion weighted imaging or gadolinium enhancement. The prostate capsule and seminal vesicles appear intact. There is no lymphadenopathy.

My PSA results back at 5.5, which have improved. 

I have a TRUS booked in for Friday but I am now thinking about cancelling this and would prefer watchful waiting.

what would you do ?

User
Posted 11 Jun 2018 at 15:56

Personally, I would politely decline the TRUS Biopsy, and request a Template Biopsy, even if I had to wait a few months. Far too often TRUS Biopsies have to be succeeded by Template Biopsies in a quest for more accurate results.

But please have one or other biopsy to put your mind at rest.

User
Posted 11 Jun 2018 at 16:20
Brian,

Different men would respond one way and the other in your situation but what is important is that you think it over and decide what you feel ir right for you now. The TRUS biopsy in your case would be tantamount to throwing darts at a board whilst blindfolded with a risk of infection.. Many of the men on this forum being already diagnosed with PCa might come down on that side of having the TRUS but you have a particularly large Prostate so not surprising your PSA is somewhat elevated.. In your position I would not proceed with a TRUS for the time being.unless indicators show this would be of more benefit. But this is just what I would do in your present circumstances and is not a recommendation.

Barry
User
Posted 11 Jun 2018 at 17:10

Sorry you don' say how old you are? Or family history?? Also was it an MPMRI? Assuming it was an MPMRI then to answer your question of what I would do:

If you are "old" and your urologist agrees then I would say monitor PSA every 3 months and get a consistent picture over 12 months before having any invasive tests as biopsies are not without significant risk.

If you are young, and there is family history then you probably want to be sure nothing is going on and a template biopsy would give a better chance of confirming this.

Or some path in between!! but a Trus with no target isn' going to give you a definitive all clear.

 

User
Posted 12 Jun 2018 at 08:49

sounds like it' a monitor job to me!

User
Posted 12 Jun 2018 at 09:45

In my opinion its similar to what Barry has written, depends on the individual. If you were going to have any biopsy I'd say template but my feeling is that there is a good chance it could find clinically insignificant cancer. If it was a 3t mpMRI and it showed no PIRADs 4 or 5 areas then in the last study I read showed a very low chance of finding anything significant on biopsy less than 7% of PIRADs 3 areas turned out to be cancerous and most of them were g6. That said if it was me I'd want to be as sure as possible and I'd have a template biopsy to back up the mri findings. From the study:

 

The mean age of patients in this cohort was 62.6 years. Median prostate specific antigen (PSA) was 6.5 ng/ml and median prostate size was 78.4 ml. Eightysix (93.5%) of biopsied PIRADS 3 lesions were benign and 6 (6.5%) lesions were found to be malignant. Of these 6 malignant lesions, 4 (66%) were Gleason score 6 (3 + 3) and 2 (33%) were Gleason score 7 (3 + 4). 

Edited by member 12 Jun 2018 at 09:50  | Reason: Not specified

User
Posted 16 Jun 2018 at 06:56
Largely agreeing with earlier suggestions...

'Ordinary' (non-mpMRI) MRI may not show stuff, so an appropriate mpMRI is preferable.

TRUS biopsies often miss problems (akin to stabbing a fruit-cake and hoping to spear a cherry), so template is preferable. An 'in-between' option is 'fusion' (combining MRI and TRUS).

A template biopsy should help you be better informed.

Depending on your provider, various options may not be offered - either by the hospital or the consultant - and you might be fobbed-off. But everything that's been suggested here is normal, and should be available/offered if you 'push' for it and are prepared to change providers.

Personally, if I wanted to be 'as sure as I could be', I'd request mpMRI and then template.

User
Posted 16 Jun 2018 at 09:51

Can't advise you what to do Brian for the best but can only tell you my husband's experience.

He was scheduled for a TRUS following mpMRI but after reading one too many horror  stories about the pain during the procedure he politely asked a couple of weeks before the due date if he could be lightly

 

sedated. They declined this saying this is not how we do it here. ( Local general hospital who just do the tests but not treatment if PCa is found) If they had offered him some diazepam he would have gone ahead with it.

He declined with the result that a  registrar rang him back and was sympathetic enough to offer the Template biopsy. With hindsight we are glad this happened because out of 38 samples,    9 were Gleason 3 and only one a 4.

We can't  help but wonder if he had gone ahead with the TRUS it is unlikely it would have found the 4 and he may well have been persuaded to go down the active surveillance route leaving the more dangerous 4 element to progress..

 

As it happens his post prostatectomy histopathology results were good although it did show moderate patchy lesions and  at the apex the cancer was only 0.5mm away from breaking through so he may well have missed his window of opportunity for the surgeon to achieve negative margins which are obviously better than positive ones.

Best Regards

Ann

 

User
Posted 16 Jun 2018 at 13:16

Originally Posted by: Online Community Member
Largely agreeing with earlier suggestions...

'Ordinary' (non-mpMRI) MRI may not show stuff, so an appropriate mpMRI is preferable.

TRUS biopsies often miss problems (akin to stabbing a fruit-cake and hoping to spear a cherry), so template is preferable. An 'in-between' option is 'fusion' (combining MRI and TRUS).

A template biopsy should help you be better informed.

Depending on your provider, various options may not be offered - either by the hospital or the consultant - and you might be fobbed-off. But everything that's been suggested here is normal, and should be available/offered if you 'push' for it and are prepared to change providers.

Personally, if I wanted to be 'as sure as I could be', I'd request mpMRI and then template.

 

It seems that Brian23 has already had the mpMRI which showed no areas of concern.

 

TRUS seems pointless in this situation, especially with such a large prostate and so watchful waiting (aka careful monitoring) is probably very wise for the time being.  

Edited by member 16 Jun 2018 at 13:17  | Reason: Not specified

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

User
Posted 25 Aug 2018 at 09:00

@Rich12...

Credit to you for the irony remark.

I too 'was riddled'... surgeon remarked 'with that PSA it'd be harder to miss than hit it'. When Gleason came-in at only 4+4, I quipped 'so you missed it then'.

Edited by member 25 Aug 2018 at 09:01  | Reason: Seagull flew over and distracted me.

User
Posted 06 Dec 2018 at 18:33
Make sure that your urologist is aware of what you are taking. Pygeum may falsely lower your PSA - in other words, it is possible that your true PSA may have risen significantly but is being masked by the supplements you are taking.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Dec 2018 at 18:43
Hi Brian

I presume you are in England, despite you having a German doctor.

Personally, I would not set much store by these herbal remedies although a friend of mine has researched this intensively for the past four years and he feels there may be some benefit from CBD oil.

If it comes to it, do stick out for an NHS template biopsy. Unless you want to ‘enjoy’ another one a few months later.

Cheers, John

Show Most Thanked Posts
User
Posted 11 Jun 2018 at 15:56

Personally, I would politely decline the TRUS Biopsy, and request a Template Biopsy, even if I had to wait a few months. Far too often TRUS Biopsies have to be succeeded by Template Biopsies in a quest for more accurate results.

But please have one or other biopsy to put your mind at rest.

User
Posted 11 Jun 2018 at 16:20
Brian,

Different men would respond one way and the other in your situation but what is important is that you think it over and decide what you feel ir right for you now. The TRUS biopsy in your case would be tantamount to throwing darts at a board whilst blindfolded with a risk of infection.. Many of the men on this forum being already diagnosed with PCa might come down on that side of having the TRUS but you have a particularly large Prostate so not surprising your PSA is somewhat elevated.. In your position I would not proceed with a TRUS for the time being.unless indicators show this would be of more benefit. But this is just what I would do in your present circumstances and is not a recommendation.

Barry
User
Posted 11 Jun 2018 at 17:10

Sorry you don' say how old you are? Or family history?? Also was it an MPMRI? Assuming it was an MPMRI then to answer your question of what I would do:

If you are "old" and your urologist agrees then I would say monitor PSA every 3 months and get a consistent picture over 12 months before having any invasive tests as biopsies are not without significant risk.

If you are young, and there is family history then you probably want to be sure nothing is going on and a template biopsy would give a better chance of confirming this.

Or some path in between!! but a Trus with no target isn' going to give you a definitive all clear.

 

User
Posted 11 Jun 2018 at 17:41

Thanks for your comments,

 I am 67 years young this year with no family history.

The procedure MRI was a Pelvis and prostate with contrast. MRI Diffusion weighted.

conclusion was : There is BPH volume 84ml. There is no sign of significant prostate cancer.

My PSA level has improved from 7 to 5.5 over the last six week period.

User
Posted 12 Jun 2018 at 08:49

sounds like it' a monitor job to me!

User
Posted 12 Jun 2018 at 09:45

In my opinion its similar to what Barry has written, depends on the individual. If you were going to have any biopsy I'd say template but my feeling is that there is a good chance it could find clinically insignificant cancer. If it was a 3t mpMRI and it showed no PIRADs 4 or 5 areas then in the last study I read showed a very low chance of finding anything significant on biopsy less than 7% of PIRADs 3 areas turned out to be cancerous and most of them were g6. That said if it was me I'd want to be as sure as possible and I'd have a template biopsy to back up the mri findings. From the study:

 

The mean age of patients in this cohort was 62.6 years. Median prostate specific antigen (PSA) was 6.5 ng/ml and median prostate size was 78.4 ml. Eightysix (93.5%) of biopsied PIRADS 3 lesions were benign and 6 (6.5%) lesions were found to be malignant. Of these 6 malignant lesions, 4 (66%) were Gleason score 6 (3 + 3) and 2 (33%) were Gleason score 7 (3 + 4). 

Edited by member 12 Jun 2018 at 09:50  | Reason: Not specified

User
Posted 16 Jun 2018 at 06:56
Largely agreeing with earlier suggestions...

'Ordinary' (non-mpMRI) MRI may not show stuff, so an appropriate mpMRI is preferable.

TRUS biopsies often miss problems (akin to stabbing a fruit-cake and hoping to spear a cherry), so template is preferable. An 'in-between' option is 'fusion' (combining MRI and TRUS).

A template biopsy should help you be better informed.

Depending on your provider, various options may not be offered - either by the hospital or the consultant - and you might be fobbed-off. But everything that's been suggested here is normal, and should be available/offered if you 'push' for it and are prepared to change providers.

Personally, if I wanted to be 'as sure as I could be', I'd request mpMRI and then template.

User
Posted 16 Jun 2018 at 09:51

Can't advise you what to do Brian for the best but can only tell you my husband's experience.

He was scheduled for a TRUS following mpMRI but after reading one too many horror  stories about the pain during the procedure he politely asked a couple of weeks before the due date if he could be lightly

 

sedated. They declined this saying this is not how we do it here. ( Local general hospital who just do the tests but not treatment if PCa is found) If they had offered him some diazepam he would have gone ahead with it.

He declined with the result that a  registrar rang him back and was sympathetic enough to offer the Template biopsy. With hindsight we are glad this happened because out of 38 samples,    9 were Gleason 3 and only one a 4.

We can't  help but wonder if he had gone ahead with the TRUS it is unlikely it would have found the 4 and he may well have been persuaded to go down the active surveillance route leaving the more dangerous 4 element to progress..

 

As it happens his post prostatectomy histopathology results were good although it did show moderate patchy lesions and  at the apex the cancer was only 0.5mm away from breaking through so he may well have missed his window of opportunity for the surgeon to achieve negative margins which are obviously better than positive ones.

Best Regards

Ann

 

User
Posted 16 Jun 2018 at 12:47

Thank you for your post Ann,

Thankfully he had the template biopsy which showed the problem which would have probably gone un noticed with the TRUS.

I do hope your husband is on the road to recovery. 

For myself I cancelled the TRUS biopsy and because of this the follow up appointment has been cancelled by them so I am waiting for another appointment to discuss the way forward. My GP was not happy about them cancelling the appointment as I am still waiting for the Specalists take on the MRI scan. The wait is agonising ! The scan shows a BPH. 

Once again thank you for your comments.

User
Posted 16 Jun 2018 at 13:16

Originally Posted by: Online Community Member
Largely agreeing with earlier suggestions...

'Ordinary' (non-mpMRI) MRI may not show stuff, so an appropriate mpMRI is preferable.

TRUS biopsies often miss problems (akin to stabbing a fruit-cake and hoping to spear a cherry), so template is preferable. An 'in-between' option is 'fusion' (combining MRI and TRUS).

A template biopsy should help you be better informed.

Depending on your provider, various options may not be offered - either by the hospital or the consultant - and you might be fobbed-off. But everything that's been suggested here is normal, and should be available/offered if you 'push' for it and are prepared to change providers.

Personally, if I wanted to be 'as sure as I could be', I'd request mpMRI and then template.

 

It seems that Brian23 has already had the mpMRI which showed no areas of concern.

 

TRUS seems pointless in this situation, especially with such a large prostate and so watchful waiting (aka careful monitoring) is probably very wise for the time being.  

Edited by member 16 Jun 2018 at 13:17  | Reason: Not specified

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

User
Posted 24 Aug 2018 at 16:52

Hello again, I have at last got an appointment at the PSA clinic to discuss the results of the MRI scan with the consultant,In readiness for this I had a PSA blood test done at my GPs and the results have come back at 6.2 and saying "normal for this patient" My research is telling me that my PSA level is elevated due to my enlarged prostate in view of this I am hoping that my consultant agrees and I can watchfully wait with regular PSA tests.

User
Posted 24 Aug 2018 at 21:18
To help Brian (and myself!).....

is there ever a situation where you (commentors) advocate TRUS biopsy? Every post I see from you guys says TRUS is no good cf template. I had this on private treatment yet now worry what may have been missed?

From Brian's point of view is there a scenario where you would TRUS is ok?

User
Posted 24 Aug 2018 at 22:44

I'd advocate a TRUS biopsy if an MRI had been done to direct it.  Also in my case where the psa at 9 had the potential to be going into a higher risk region a faster diagnosis is welcome. They only need to find some Gleason 4 to know it needs fast treatment. 

I had the biopsy first and had the impression the MRI gave the most information for me.  If the biopsy had missed it with a psa of 9 they knew there was high probability of something there and a template biopsy would have been done along with the MRI.   I was offered a template biopsy for further definition but rejected it.

Also the pain of a TRUS is exaggerated, the vast majority have only discomfort.  There is discomfort post biopsy and having twice as many holes punched in your prostate must be more to heal with the potential to spread the disease and be susceptible to disease.

In my case the MRI after the biopsy said it was near the edge of the prostate and with the Gleason 4+3 was more reason for fast treatment.  The Gleason post op was 4+4, whether it was that all along I don't know but speed must have done some good.  In some cases PCa is slow growing and time may not be critical but with 4+4 on the edge of the prostate it was already in a high risk situation.

Edited by member 24 Aug 2018 at 22:47  | Reason: Not specified

User
Posted 24 Aug 2018 at 23:22

Originally Posted by: Online Community Member
To help Brian (and myself!).....

is there ever a situation where you (commentors) advocate TRUS biopsy? Every post I see from you guys says TRUS is no good cf template. I had this on private treatment yet now worry what may have been missed?

From Brian's point of view is there a scenario where you would TRUS is ok?

Ideally you would use TRUS if you have a target to aim at from an MRI. The danger of TRUS is the limited number of samples may mis significant cancer but having a clear target from MRI mitigates this risk. 

It is also a less invasive and less painful procedure hence it can be done with a local anesthetic.

In your case Rich you have had the kitchen sink thrown at it so there is no danger of undertreatment.

 

 

 

User
Posted 25 Aug 2018 at 02:37
The reason I eschewed the offered TRUS biopsy in the first place is that two friends had one and then they both had to undergo template biopsies subsequently.

Now on this site and others I read of men almost daily who suffered the same scenario. In fact, yesterday I read somewhere (can’t remember where) of a man who had had three TRUS biopsies over a couple of years which all came back clear, but it was only after an MRI and a template biopsy that his cancer was confirmed!

User
Posted 25 Aug 2018 at 05:44

@Rich12...

>Is there ever a situation where you (commentors) advocate TRUS biopsy?

Yep sure: if you'd rather remain relatively clueless about what's happening inside you, and are happy with an increased risk of death.

In some cases (high double-digit and greater PSA, and a prior MRI indicating 'likely riddled with it') a TRUS is acceptable. But 'advocate'? Nope.

Commonly accepted statistics suggest TRUS to be unreliable in 25-30% of cases. The similar figure for MRI is less than 10%.

(Also relevant... it's not wise to walk-away smiling after a GP has shoved a finger up yer wotsit and told you 'all ok'.)

User
Posted 25 Aug 2018 at 08:29
Mr Gulliver, or do you get "Gulls" or "Liver" (the irony....).

So for Brian's sake, I had TRUS after MRI showed ~19mm tumour on left lobe which was targeted on biopsy. Some random samples were taken and ALL found to be cancerous (i.e. "Riddled"). Therefore TRUS was appropriate for me I suppose. Not so for you Brian.

User
Posted 25 Aug 2018 at 09:00

@Rich12...

Credit to you for the irony remark.

I too 'was riddled'... surgeon remarked 'with that PSA it'd be harder to miss than hit it'. When Gleason came-in at only 4+4, I quipped 'so you missed it then'.

Edited by member 25 Aug 2018 at 09:01  | Reason: Seagull flew over and distracted me.

User
Posted 25 Aug 2018 at 22:54

According to one of the UK's leading urologists, MRI should be done before biopsy, this is what urologists prefer and is being increasingly adopted. Quite apart from the greater cost of Template over TRUS biopsy, the former takes more resources and time, something that adds to the problem of processing patients in our overstretched NHS. It is true that the Template biopsy leaves more perforations to heal but there is much less chance of infection because the needles go through the perineum rather than the rectum as in the TRUS biopsy. Also, because of the grid placement of needles with the Template, there is a much greater chance of finding significant tumours, So if a man can have the Template version, this is generally better where biopsy is deemed advisable.

Edited by member 25 Aug 2018 at 22:57  | Reason: Not specified

Barry
User
Posted 06 Dec 2018 at 18:01

Just an update:

After my appointment with the URO Doc end of August and with a PSA level of 6.2 it was agreed that we would hold off on biopsy  (as they were unable to offer me a Template biopsy) and that we would look at my levels end of November and if the levels have gone above 6.5 I agreed that I would have the TRUS Biopsy or I would pay to have the Template Biopsy.

I have been taken some herbal extracts and advised the Doctor of these. He was a German doctor and was familiar with one of the extracts called  Pygeum Bark and told me that in Europe the herb is prescribed to patients diagnosed with BPH. I have been taken this herb in a 500mg capsule standardised 30:1 along with Stinging Nettle Root 20:1 for the last 4 months. It has helped me enormously with my symptoms.

I have just had my PSA results back from my GP at 4.1.

I have my Urology appointment on Monday and hopefully we will carry on with the monitoring program. 

User
Posted 06 Dec 2018 at 18:33
Make sure that your urologist is aware of what you are taking. Pygeum may falsely lower your PSA - in other words, it is possible that your true PSA may have risen significantly but is being masked by the supplements you are taking.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Dec 2018 at 18:43
Hi Brian

I presume you are in England, despite you having a German doctor.

Personally, I would not set much store by these herbal remedies although a friend of mine has researched this intensively for the past four years and he feels there may be some benefit from CBD oil.

If it comes to it, do stick out for an NHS template biopsy. Unless you want to ‘enjoy’ another one a few months later.

Cheers, John

User
Posted 07 Dec 2018 at 14:07

Thanks for your post

My Urology Doctor is aware of the herbal extracts I am taking it was him that told me that it is prescribed in Europe for treating BPH.

He didn't say anything about it lowering PSA levels falsely.

I have an appointment with him on Monday and I will ask him then

Many Thanks

User
Posted 07 Dec 2018 at 14:18

Thanks John,

Yes I am based in England, my URO Doctor is German.

I have found that the herbal remedies have worked for me and have reduced the symptoms I was having prior to taking them, however I have cut out Dairy products and am paying attention to my diet and exercise.

I understand that everyone is different and am not suggesting that they would suit everyone.

Thanks for your post John

User
Posted 14 Jun 2019 at 11:20

Following up on my previous posts to the unbelievable situation I know find myself in.

During Sepember & October 2018 I was experiencing Unexplianed pain throughout various location throughout my body. I had various appointments throughout those months and was prescribed a variety of painkillers but the pain and discomfort continued. Eventually I was referred for an X ray of the pelvis & spine this was carried out on the 31st October 2018. The results came back showing no signs of anything abnormal and that there is nothing to worry about as everything shown on the X Ray is degenerative wear which you would associate with a man of my age 67. I asked at this point if this pain could be associated with the 17mm lesion that was found in my right femur and was told if there was a problem then they would have reacted as I heard nothing I assumed everything that the X Ray was stating was in order.

The pain continued during November & December which resulted in many visits back & forth to GP on each appointment I kept mentioning this 17mm lesion as this was giving me concern. The doctor said I may benefit from  some Physio and booked 6 appointments that took me from November until after the Christmas period, the Physio did no good whatever and told the doctor such. I had a PSA clinic appointment booked as documented above.

 

 

User
Posted 14 Jun 2019 at 11:52
Is there any more to this post? What is the unbelievable situation that you are now in????
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Jun 2019 at 12:18

Yes there is much much  more to this post but the district nurse has called by and I have had to break away from posting as I have appointments this afternoon. Please be patient and I will carry on the post when I can 

User
Posted 14 Jun 2019 at 16:35

So following up & to cut a long story short. When I attended the December appointment I once again asked about the 17mm lesion that the MRI had picked up at the May scan and they said they had no concerns & since PSA was boarder line normal and recent MRI had come back PI-RADS 2 score they agreed to take me of the cancer pathway and review in 3 months time taking PSA test one week before. This appointment was made for April 14th.

As explained on earlier post very painful low back radiating all over body resulting in many GP visits and many combinations of pain killing drugs & Physio visits. Eventually my GP referred me for an urgent MRI scan of pelvis & spine. This appointment took 6 weeks to come through during which time many more visits to GP. 

The MRI scan took place on Sunday 7th April, I had a PSA test booked in at GP the next day 8th. At the scan I went in feet first for 20 mins & then head first for a further 20mins. The following day I took a call from my GP informing me that the scan had picked up cancer in my spine from L2 a significant mass had been detected. Immediate appointments followed with multi disapline team. Radiology, urology & oncology and a total of no less then 9 X scans and tests followed up within  2 weeks of the original scan to try to locate the primary source of the cancer as it was suggested the 17mm lesion was a secondary source, at the time of the scans the CAT scan picked up many secondary lesions thoughout my body however they are unable to find the primary source and the ultra scan shows no signs of cancer in my major organs. After a 5 week hospital and hospice stay I have been discharged with the following diagnosis of metastatic cancer of unknown source which has caused a metastatic spinal cord compression for which RT was given while investigation into primary cancer site is on going but any treatment is palatine and is likely to be limited due to the advanced disease state. In terms of prognosis months due to spinal cord compression. Physically deteriorating rapidly, likely to continue to progressing to wards terminal phase. 

User
Posted 14 Jun 2019 at 17:03
That's awful news, Brian. I'm so sorry to hear it. Has your medical treatment managed to make you pain-free now?

Best wishes,

Chris

User
Posted 14 Jun 2019 at 17:21

Brian, I'm really sorry to hear this.

Has there been any suggestion of taking a biopsy of one of the mets to identify what the cell type and origin is? I'm thinking this might lead on to a hormone therapy or chemo to target it, or even a trial if there's a suitable one available for that cancer type.

Edited by member 14 Jun 2019 at 17:21  | Reason: Not specified

User
Posted 14 Jun 2019 at 18:35

Thankfully hospice medical team have managed to keep the pain in check with the morphine 100g slow burner twice a day and I have morphine 15 ml per hour if needed up to 110 ml . 

Unfortunately they are unable to offer me any treatment as they are unable to locate a primary source as all organs appear to be clear of any cancer and it would suggest that the 17mm lesion found on the MRI prostate scan last May is in fact the source and started in the femur. With no treatment plan available and we have already tried RT the only treatment they are giving is to control pain from the bone cancer. We are looking into the possibility of a bone biopsy of the femur. But it does at this stage look like only palative treatment is available as the cancer is so far advanced. It must be an aggressive type to have advanced so far in 4 to 5 months.

thank you for your comments

 

User
Posted 14 Jun 2019 at 22:20
Terrible news Brian. I am so sorry for you and hope that at least pain can be controlled. I think your case is quite unusual because where there is PCa outside the Prostate, there is usually evidence of cancer within the Prostate. This is an uninformed and maybe naive thought which would doubtless have drastic consequences and involve other procedures and the position of the tumour in the Femur might make this impossible anyway but I wonder whether the affected part with the tumour could be cut away and rebuilt. This would leave the cancer in the spine which they might be able to treat with a combination of surgery and RT regardless of what RT already given. Even if this was all doable, there is no guarantee that it would work for long and you might not wish to undergo all that is involved but drastic situations can require drastic actions for a chance of success or to buy more time and from what you say it appears the consultant has no suggestions. (I assume the RT previously given was to the Femur and not the spine).
Barry
User
Posted 14 Jun 2019 at 22:50

If it was prostate cancer, you would be put on hormone therapy. As far as I can see, you've never been on hormone therapy, so it should be effective very quickly.

Given they haven't done this, I guess they don't think it's prostate cancer, but some other cancer.

Obviously, I don't have all your medical details, but given what you've said, I would push to get it identified via biopsy - you have nothing to lose. Once that's done, there's a chance it might open the door for some systemic treatments.

User
Posted 15 Jun 2019 at 10:44
Yes, Andy 32 they did start me on Hormone therapy the very next day and completed the whole course whilst other test were being carried out. Prostate cancer was ruled out as they carried on trying to locate where the primary source of the cancer started. It would appear as all organs were showing clear that they suspect the primary source could well have been the 17mm lesion showing in the femur on the first MRI scan of last year and that left unchecked has now left me in this current situation

Thank you for your post

User
Posted 15 Jun 2019 at 11:04

Thank you, Old Barry, The original scan carried out on May 18 found no sign of prostate cancer and that the prostate was a BPH. It did show a 17mm lesion in my right femur and was dismissed by them at the time. 

Targeted RT to the spine area was carried out over 5 X sessions directed towards T2 area of spine.

The cancer in the spinal area has been classified as "untreatable" and advanced the prognosis is months with palative care pain control support provided by the hospice. The speed of which this happening is what I can't get my head around. From October 31st  X Ray showing no abnormal images and doctors stating everything normal for a man of my age. Then April 7th spine cancer advanced to the stages of un cure able 

Thank you for your post 

 

User
Posted 16 Jun 2019 at 00:57
Thank you for clarifying your situation Brian. Perhaps those involved in your case were unable to truly establish how far your cancer had advanced from what they had or it could have been one of the few cases where cancer does spread very quickly and unpredictably or a combination of both. The devastating thing is your prognosis now and I hope you have the best care possible in the circumstances.
Barry
 
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