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Advice and reassurance anyone?

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User
Posted 04 Dec 2015 at 12:27

Hello All,

Every since being under investigation back in April this year, I've been a keen follower of all the support and advice offered on this site, which has proven to be very informative and invaluable!

I would be extremely grateful for any advise or reassurance anyone can offer me with regards to my current situation.

I'm 46 and requested a PSA test in April 2015 due to family history (BHP/PC). This came back at a concerning 9.88 so was referred to hospital.

Had a DRE and ultrasound scan that detected a slightly enlarged prostate, but concern enough for an MRI that was carried out in May. This was clear so had another PSA blood test on that visit which came back elevated to 10.88. However, I was then referred back to my GP for a three month review in October.

My PSA test was retaken at  GP's and came back elevated to 12.75 so again, I was referred back to hospital in November. At this visit I had a TRUS biopsy performed and had the results back this week - Right side, six samples clear / Left side one of six samples abnormal? I have now been referred back to my GP for a SIX month review and told if it my PSA exceeds 15, they will carryout a template biopsy.

This has caused a lot of anxiety, not really knowing any answers and worrying about possible delay implications!?!

Any advice would be gladly received!

 

Many thanks in advance,

Trickster

 

 

User
Posted 04 Dec 2015 at 13:40

Hello Trickster and welcome

I'm not surprised you are worried.

I am not experienced enough to judge whether what you are going through is acceptable but we have men on here with PSA results a lot lower than yours (my husband's was 6.3 at treatment) who are offered treatment, even if it is active surveillance.

I really hope that somebody with more knowledge than me can come along and offer their take on your situation..

In fact I am sure that there will be helpful advice from the other members so just be patient a little longer until somebody is free to answer you.

We can't control the winds - but we can adjust our sails
User
Posted 04 Dec 2015 at 14:36

Hi Trickster,

If I were in your position I think I would be asking for a bit more proactivity in my treatment. My PSA was 6.4 when I opted for treatment, having risen from 5.5 seven weeks earlier. This was thought by me, Dr Google and my GP to be an aggressive cancer. A socialist has since told me it was not, but no matter I have had my treatment and can change nothing.

Your PSA is higher than mine and I was 7 years older than you at diagnosis, AND you have a family history. Why you are not being offered more treatment options and support at this stage does surprise me and would worry me if it were me in your shoes.

At the least knowing that you have had 1 sample positive for cancer I would be considering a second MRI to see if this picks that up? If it does not, then either the MRI has failed or whoever is interpreting the results is having a bad day. But any of the samples taken on that side could have missed cancer cells by a MM.

Have you expressed your worries to your GP, in writing is always good as it tends to focus peoples minds and consider the consequences when they are confronted with a written "I am worried about my health" set of text.

There are activities that can spike a PSA result, orgasm within 48 house of the test being done can have an effect, as can riding a bike, or a blow to the testicle area. Any chance your results could be skewed by any of this?

Hope you can get some satisfaction with your GP?

atb

dave

 

 

Edited by member 05 Dec 2015 at 06:37  | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 04 Dec 2015 at 14:45

Hello Trickster,

I haven't been in your position, as my numbers were less.

However the one thing I learned was you have to push back on things you don't agree with. Initially I had a GP who told me I was wasting people's time asking for a PSA test at 50.

More recently I had to accelerate timescales on consultations, treatments etc.

I am sure others will say the same, I think you need to go back to your GP.

Good luck!

Piere

User
Posted 04 Dec 2015 at 18:05

Hi Trickster, I agree with the others that you need to,be proactive with your own body so do not leave everything to the NHS to chase you or do all the work.

I believe that keeping the pressure up and phoning doctors/specialists/secretaries etc will be for the good of your treatment. Do not leave it to chance.

Do your research and stay informed so that you are not fobbed off, come back with questions that you want answers to.

Better to be safe than sorry!

Hope you get it sorted.

Cheers Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 04 Dec 2015 at 18:34
If I were you, and I could afford it, I would get a private appointment with a urologist at your local spire or other private hospital.

That way you should get a quick appointment, probably before Christmas and tell him everything.

He could then get the relevant tests done for you quickly.

I hope that everything turns out to be okay.

Alison

User
Posted 05 Dec 2015 at 04:33

would agree with the comments above you need to fight your corner, ask your GP for a 2nd opinion

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 05 Dec 2015 at 10:24
The question I'd like an answer to is "why15" that's a large number. I can totally understand your concern, you feel like something is going on but no one is taking it seriously. Like the others said, if you have private insurance I'd get an appointment to discuss this more thoroughly.

Best of luck

Allison

User
Posted 05 Dec 2015 at 15:08
Trickster

Welcome to the forum although sorry that you are here.

I agree with all that has been said so far.

I would also add that there is a school of thought that treatments can be so debilitating that for such a young man there is a tendancy to under react. Your hospital and GP may be on that wavelength some are really concerned because treatments can seriously impact your sex life, possible continence and play havoc with your mental state as well as the physical implications.

I simply do not subscribe to that thinking, as, thank goodness these effects are usually temporary. Especially if the cancer is caught early and Treated effectively.

In your case I would definitely be asking for much more proactivity.

Write the letter to your GP (copy it to the hospital team) and then visit your GP asking him to clearly explain why , with evidence of cancer, your family history and your obvious concerns that you are not getting further tests and possible treatment now.

Meantime if you can take a partner, family member or friend with you who can make notes or even record any future consultations, that can help.

Also downloading the toolkit from this site is a good idea. Try not to Google too much until you get a definitive diagnosis though as this disease comes in numerous forms some described as pussy cat ranging right through to tiger like.

Best wishes

Xx

Mo

User
Posted 06 Dec 2015 at 02:04

Hi Trickster,
Scans do not always show up all the cancer and indeed vary in quality. Most hospitals still only have the basic 1.5 Tesla MRI scanner which lacks the definition of the 3 Tesla machine and more advanced scanners above that and even these can lead to different interpretations as in my case. Also, it is possible, particularly with a TRUS biopsy for some cancer to be missed. It is true that some variants of PCa can produce more PSA than others but going up to 15 seems high to me.

In your situation I would seek a further opinion for your peace of mind at least. Of course one does not wish to rush into treatment until this is advisable but you don't wish to miss the chance of treatment being most effective is this is required either.

Barry
User
Posted 06 Dec 2015 at 10:47

I had 1 core of 12 positive which was followed by a template biopsy in which 6/26 were positive. I'd definitely be wanting a TB in your shoes.

Paul

Stay Calm And Carry On.
User
Posted 09 Dec 2015 at 21:12
Hello trickster

I'm sure you don't need anyone else telling you to go back to your GP, but go back to your GP.

Having read your profile and this time line, it would seem that your GP is playing with fire. You have three huge indicators- your family history, your ethnicity and your psa. Don't wait. And be very insistent. I've always found the phrase 'if you were me, what would you do?' Works well.

The squeakiest wheel gets the oil.

Good luck

Louise x

User
Posted 09 Dec 2015 at 21:17

Hi Trickster,

When you say one core of the biopsy was abnormal, what was it diagnosed as? I suspect it wasn't cancer otherwise you would have said that, so was it high grade PIn? If so, that is exactly the same as me, PSA of 8.9 in April, TRUS biopsy in June with one core high grade PIN. Repeat PSA test September of 14.7 and 15.0 in October, MRI scan in November which "essentially didn't show anything worrying" and the urologist just wants to do a 6 month follow up which I am not happy with. I can't even get to speak to him, I have to write letters, so I can understand your frustration at the lack of urgency

Alan

Edited by member 10 Dec 2015 at 14:18  | Reason: Not specified

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User
Posted 04 Dec 2015 at 13:40

Hello Trickster and welcome

I'm not surprised you are worried.

I am not experienced enough to judge whether what you are going through is acceptable but we have men on here with PSA results a lot lower than yours (my husband's was 6.3 at treatment) who are offered treatment, even if it is active surveillance.

I really hope that somebody with more knowledge than me can come along and offer their take on your situation..

In fact I am sure that there will be helpful advice from the other members so just be patient a little longer until somebody is free to answer you.

We can't control the winds - but we can adjust our sails
User
Posted 04 Dec 2015 at 14:36

Hi Trickster,

If I were in your position I think I would be asking for a bit more proactivity in my treatment. My PSA was 6.4 when I opted for treatment, having risen from 5.5 seven weeks earlier. This was thought by me, Dr Google and my GP to be an aggressive cancer. A socialist has since told me it was not, but no matter I have had my treatment and can change nothing.

Your PSA is higher than mine and I was 7 years older than you at diagnosis, AND you have a family history. Why you are not being offered more treatment options and support at this stage does surprise me and would worry me if it were me in your shoes.

At the least knowing that you have had 1 sample positive for cancer I would be considering a second MRI to see if this picks that up? If it does not, then either the MRI has failed or whoever is interpreting the results is having a bad day. But any of the samples taken on that side could have missed cancer cells by a MM.

Have you expressed your worries to your GP, in writing is always good as it tends to focus peoples minds and consider the consequences when they are confronted with a written "I am worried about my health" set of text.

There are activities that can spike a PSA result, orgasm within 48 house of the test being done can have an effect, as can riding a bike, or a blow to the testicle area. Any chance your results could be skewed by any of this?

Hope you can get some satisfaction with your GP?

atb

dave

 

 

Edited by member 05 Dec 2015 at 06:37  | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 04 Dec 2015 at 14:45

Hello Trickster,

I haven't been in your position, as my numbers were less.

However the one thing I learned was you have to push back on things you don't agree with. Initially I had a GP who told me I was wasting people's time asking for a PSA test at 50.

More recently I had to accelerate timescales on consultations, treatments etc.

I am sure others will say the same, I think you need to go back to your GP.

Good luck!

Piere

User
Posted 04 Dec 2015 at 18:05

Hi Trickster, I agree with the others that you need to,be proactive with your own body so do not leave everything to the NHS to chase you or do all the work.

I believe that keeping the pressure up and phoning doctors/specialists/secretaries etc will be for the good of your treatment. Do not leave it to chance.

Do your research and stay informed so that you are not fobbed off, come back with questions that you want answers to.

Better to be safe than sorry!

Hope you get it sorted.

Cheers Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 04 Dec 2015 at 18:34
If I were you, and I could afford it, I would get a private appointment with a urologist at your local spire or other private hospital.

That way you should get a quick appointment, probably before Christmas and tell him everything.

He could then get the relevant tests done for you quickly.

I hope that everything turns out to be okay.

Alison

User
Posted 05 Dec 2015 at 04:33

would agree with the comments above you need to fight your corner, ask your GP for a 2nd opinion

regards

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 05 Dec 2015 at 10:24
The question I'd like an answer to is "why15" that's a large number. I can totally understand your concern, you feel like something is going on but no one is taking it seriously. Like the others said, if you have private insurance I'd get an appointment to discuss this more thoroughly.

Best of luck

Allison

User
Posted 05 Dec 2015 at 15:08
Trickster

Welcome to the forum although sorry that you are here.

I agree with all that has been said so far.

I would also add that there is a school of thought that treatments can be so debilitating that for such a young man there is a tendancy to under react. Your hospital and GP may be on that wavelength some are really concerned because treatments can seriously impact your sex life, possible continence and play havoc with your mental state as well as the physical implications.

I simply do not subscribe to that thinking, as, thank goodness these effects are usually temporary. Especially if the cancer is caught early and Treated effectively.

In your case I would definitely be asking for much more proactivity.

Write the letter to your GP (copy it to the hospital team) and then visit your GP asking him to clearly explain why , with evidence of cancer, your family history and your obvious concerns that you are not getting further tests and possible treatment now.

Meantime if you can take a partner, family member or friend with you who can make notes or even record any future consultations, that can help.

Also downloading the toolkit from this site is a good idea. Try not to Google too much until you get a definitive diagnosis though as this disease comes in numerous forms some described as pussy cat ranging right through to tiger like.

Best wishes

Xx

Mo

User
Posted 06 Dec 2015 at 02:04

Hi Trickster,
Scans do not always show up all the cancer and indeed vary in quality. Most hospitals still only have the basic 1.5 Tesla MRI scanner which lacks the definition of the 3 Tesla machine and more advanced scanners above that and even these can lead to different interpretations as in my case. Also, it is possible, particularly with a TRUS biopsy for some cancer to be missed. It is true that some variants of PCa can produce more PSA than others but going up to 15 seems high to me.

In your situation I would seek a further opinion for your peace of mind at least. Of course one does not wish to rush into treatment until this is advisable but you don't wish to miss the chance of treatment being most effective is this is required either.

Barry
User
Posted 06 Dec 2015 at 10:47

I had 1 core of 12 positive which was followed by a template biopsy in which 6/26 were positive. I'd definitely be wanting a TB in your shoes.

Paul

Stay Calm And Carry On.
User
Posted 09 Dec 2015 at 21:12
Hello trickster

I'm sure you don't need anyone else telling you to go back to your GP, but go back to your GP.

Having read your profile and this time line, it would seem that your GP is playing with fire. You have three huge indicators- your family history, your ethnicity and your psa. Don't wait. And be very insistent. I've always found the phrase 'if you were me, what would you do?' Works well.

The squeakiest wheel gets the oil.

Good luck

Louise x

User
Posted 09 Dec 2015 at 21:17

Hi Trickster,

When you say one core of the biopsy was abnormal, what was it diagnosed as? I suspect it wasn't cancer otherwise you would have said that, so was it high grade PIn? If so, that is exactly the same as me, PSA of 8.9 in April, TRUS biopsy in June with one core high grade PIN. Repeat PSA test September of 14.7 and 15.0 in October, MRI scan in November which "essentially didn't show anything worrying" and the urologist just wants to do a 6 month follow up which I am not happy with. I can't even get to speak to him, I have to write letters, so I can understand your frustration at the lack of urgency

Alan

Edited by member 10 Dec 2015 at 14:18  | Reason: Not specified

User
Posted 15 Dec 2015 at 15:45

Hi All,

A BIG THANK YOU to everyone who read my post and even MASSIVE THANK YOU to those who responded.

The support and advice has certainly focused my mind and encouraged me to seek further advice.

I've since seen my GP, who seems to be on the same wavelength, which is great and I'm also booked in for a private consultation this Thursday for a that all important second opinion!

To help those who might be in a similar situation, I will feedback on anything that maybe of interest or benefit to the group.

 

Thank you all again,

Trickster!

User
Posted 15 Dec 2015 at 20:26

Glad that you have gone for a second opinion Trickster.

Hopefully something definitive will come out of it.

Good luck for Thursday.

We can't control the winds - but we can adjust our sails
User
Posted 18 Dec 2015 at 21:51
Hope it all went well

Louise x

User
Posted 19 Dec 2015 at 08:24

Hi Trickster, very glad that you have a mind set to be proactive and even gone private.

I hope you have got some answers now? Or at least a better opinion on your own situation so you can rest easier.

Try to enjoy the festive period without worrying too much.

Best wishes, Chris/Woody

Life seems different upside down, take another viewpoint

 
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