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User

Posted 08 Jul 2015 at 18:15

Hi Lyn & Bri,

My official diagnosis is also "High Risk". I've always thought it was because my Gleason score of 7 (4+3) was borderline and was pretty close to being declared an 8.

I was also told that even if my treatment was successful this time, there was strong possibility that it would return in the future.

Steve

Edited by member 08 Jul 2015 at 18:19 | Reason: Not specified

User

Posted 08 Jul 2015 at 19:37

Not liking this post either . Gleason 4+4 , T3 , PSA 43 ( doubled in 6 months ) etc . And talk of micro mets at last meeting . This has been interesting though . Finally took the time to understand Gleason today . I'll chill till end July and go from there

If life gives you lemons , then make lemonade

User

Posted 08 Jul 2015 at 20:02

Originally Posted by: Online Community Member

I like your wording better Bri - I quoted from PCUK leaflet but perhaps that's the issue - different words used in different contexts by different people but aggressiveness, risk and distortion all mean the same thing in the end, perhaps?

Possibly Lyn...to be honest I'm not sure what the high risk relates to ie recurrance, chance of micro mets, death from PCA. .Having reviewed my own suggestions i don't think I actually want to know

I do know it helps the medics to determine the most appropriate treatment pathways

Bri

I think you have answered your own question Bri. In some of the journals, 'high risk at diagnosis' relates to the likelihood or not of primary treatment doing the job. Like you, John was considered high risk because of the suspect node (although that later turned out to be a red herring) and both you and John needed adjuvant / salvage RT so the prediction was correct. Hopefully, for both of you, the additional treatment did the trick and you are now 'no risk' or at least 'very very low risk' :-)

Edited by member 08 Jul 2015 at 20:06 | Reason: Not specified

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

User

Posted 08 Jul 2015 at 20:05

Originally Posted by: Online Community Member

Relax Chris - I have only said something in a different way to what you were told after the MDT meeting - your stats made you too risky for brachy. Concentrate on getting back to good health :-)

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

User

Posted 08 Jul 2015 at 20:10

Originally Posted by: Online Community Member

Hi Lyn & Bri,

My official diagnosis is also "High Risk". I've always thought it was because my Gleason score of 7 (4+3) was borderline and was pretty close to being declared an 8.

I was also told that even if my treatment was successful this time, there was strong possibility that it would return in the future.

Steve

G7 is moderate risk so you wouldn't be considered a high risk just because 7 is nearly 8. In your case, meeting 2 of the criteria (PSA over 20, T3) was probably the reason. As I said in Bri's reply, 'high risk' is often 'high risk of recurrence' but that doesn't mean it definitely will come back - otherwise they wouldn't have bothered offering you curative treatment. Keep believing!

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

User

Posted 08 Jul 2015 at 23:31

Originally Posted by: Online Community Member

Hi Lyn & Bri,

My official diagnosis is also "High Risk". I've always thought it was because my Gleason score of 7 (4+3) was borderline and was pretty close to being declared an 8.

I was also told that even if my treatment was successful this time, there was strong possibility that it would return in the future.

Steve

Correct :)

Bri

User

Posted 09 Jul 2015 at 13:01

Quote:

I'll concur with that. Mine is stratified as intermediate risk (G 4+3) but with high risk features ( perineural invasion and surgical margin) of biochemical recurrence. Risk can also pertain to cancer-specific mortality and survival.

Incidentally, there are algorithms out there, if you care to look, which some clinicians and, indeed, patients can use to assist in deciding treatment with best outcomes, predict the likelihood of undetectable PSA 10yrs following surgery, etc.

I treat them just as statistics simply because our clinical and personal circumstances are so variable and different as has been pointed out many times on this blog.

Regards,

Jacey

User

Posted 09 Jul 2015 at 17:14

The most common tool is the Sloane-Kettering one, used by a lot of UK hospitals, but anyone looking to use it themselves needs to be aware that it is based on US data and the outcomes in the UK tend to be worse because men are diagnosed later here. Ideally, you also need to know something about the stats in your own area; for example, although St James's uses the SK tool, they then do a local adjustment because the Leeds demographic means that a 50 year old man with G7 T2 will do not as well as if he was in Newcastle and considerably worse than if he was in New York.

Statistics :-)

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

User

Posted 09 Jul 2015 at 21:05

Just to add to the confusion I was diagnosed with a psa of 6.2 a gleason of 3+4=7 and after my Robotic op.was told that I had a better than 85% chance of NOT dying of prostate cancer, which I was quite pleased to accept. How strange is that? Best Wishes to you Peter, and welcome to our club. Diesel.

Edited by member 09 Jul 2015 at 21:08 | Reason: Not specified

User

Posted 09 Jul 2015 at 21:47

Thanks once again for all the information and the good wishes included in your messages.

I have finally got an appointment with a specialist after my GP managing to lose the referral form. My appointment is on Tuesday 14th July, which is two weeks and one day after my initial visit to the GP. So I think that will count as a missed target!

I will let you know the outcome after Tuesday.

User

Posted 09 Jul 2015 at 22:21

Originally Posted by: Online Community Member

John was diagnosed with a PSA of 3.1 and G7 (3+4) but the SK nomogram predicted a 55% chance that it had already spread. We assumed it was a typo and they meant 5% but they didn't. As it turned out, they were right.

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

User

Posted 18 Jul 2015 at 13:24

Hi everyone,

I did try to post a couple of days ago, but for some reason it doesn't seem to have posted. But then the last few days have been a bit traumatic so I may have done something wrong.

I went to my assessment clinic on Tuesday and was immediately transferred by ambulance to the local A&E department. The clinician was deeply concerned that the pains in my legs were due to spinal compression. I was admitted to the hospital and ordered to remain in bed for two days. In the meantime, they organised an MRI scan to check my spine.

Luckily, there was no sign of spinal compression, but they did find that I had a number of metastasized growths on my spine. I subsequently had a complete bone scan and it seems I have growths in every bone in my body.

They started hormone treatment immediately and they are confident that that will reduce all of the tumours.

I have not yet had a biopsy, because I use warfarin for a heart condition and they didn't want to disrupt that at this moment, so I have no idea what Gleason score I may have. They are planning to do a biopsy at some point in the future.

In the meantime, I have been discharged from hospital and I am waiting to see what the side effects of the HT are like. Not looking forward to that!

Overall, the consultants are quite optimistic about my chances, talking in terms of years rather than months, so I am trying to remain philosophical. I have been assigned a MacMillan nurse, so I have a point of contact for any worries I may have.

I will let you know how things develop, but once again, thanks to each of you who have given me support and guidance.

Peter

User

Posted 18 Jul 2015 at 14:34

Wow Peter, that must have been scary for you.

Good there is no spinal compression, not so good the growths on the spine.

Years rather than months eh? that's very good since as many on here will tell you new drugs, combination of drugs and therapies etc are coming along all the time.

I'm glad you have a MacMillan nurse for reassurance.

Good luck and best wishes to you

Edited by member 18 Jul 2015 at 14:34 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 18 Jul 2015 at 16:19

Hi Peter sounds like you did have a scarey time but so glad it wasn't spinal compression.

Theres every chance it's going to be managed for years and then there are other treatments.

May help to look at Si's profile (SiNess)...or equally Allisters (Alathay's)

All the best

Bri

User

Posted 30 Jul 2015 at 14:40

Hi All,

Well I have the biopsy now, but I won't have the results until I see the oncologist, which is expected to be at the end of next week. So I am no further on in terms of knowing my Gleason score yet.

My specialist nurse did describe my condition as terminal, but told me not to worry about that, with treatment, I could last for years. Only time will tell I suppose.

I feel as if the HT is beginning to work at last. I managed a good night's sleep last night for the first time in months, only needing to visit the toilet 3 times all night. That is a huge improvement on previous nights. I haven't noticed any side effects so far, apart from getting tired out very easily. But I am trying to plan ahead to make the most of the day before I do get tired out.

All in all, I am feeling ok. I certainly don't feel ill in any way. So I guess the way forward is one day at a time.

Peter

User

Posted 30 Jul 2015 at 15:01

Glad that biopsy is out of the way Peter.

You may be terminal but as the nurse said that could be a long way in the future. There are others on here in the same boat and I expect they'll be along with words of wisdom.

Start making your memories. Enjoy what is important to you and the family.

Best wishes to you.

Sandra

We can't control the winds - but we can adjust our sails

User

Posted 31 Jul 2015 at 15:05

Hi Peter,

A belated welcome from me, I see you have had a pretty poop time of things it takes a while for it all to sink in we are just over 2 years since diagnosis with a very similar prognosis to you (if you click on individual avatars you can read peoples bios) . If you are going to read Trevor's get your self a cuppa or bottle of wine as I do tend to ramble on a bit.

Trevor is one of the few men who didn't have a biopsy so it's not always essential . So it's official you are a member of the Mets club the only advice that I can offer is actually what you have already said and that is to take one day at a time, this is our Mantra . If you have any questions or just need support ask away.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 31 Jul 2015 at 15:58

Hi Peter

I am sorry that you are here with us but additionally sorry that the nurse chose to use the word "terminal".

What she should have said is that you like me are uncurable however that is not to say that with the range of drugs and treatments around you (and I!!) won't be here for many years and with further advancement in treatments a few more after that.

The word terminal should I believe only be used when the cancer has got a hold and no drugs or treatments are left to slow the progression, at that stage it would appear that there should be another year or so too so please don't think of yourself as terminal right now.

That said, I am sure like me you have changed your view on many things in life already and living for the day is more of a feature than planning for the future however I have discovered that there is so much pleasure to be had by just being alive and out there. I hope that you feel strong about yourself and manage to enjoy most days.

Take care

Kev

Edited by member 31 Jul 2015 at 16:01 | Reason: Not specified

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 01 Aug 2015 at 12:55

I agree with Kev, the use of the word "terminal" is not appropriate. Tony has a similar cancer and prognosis to yours, Peter, and we asked whether it was "terminal" (for travel insurance purposes). Both the nurse and the oncologist said, no, not yet. "Terminal" is end-stage, when treatment options have run out. A cancer that's incurable but is still being treated to prolong life isn't terminal.

I know it's just words, but it helps to think in the most positive terms we can.
Good luck,
Marje

User

Posted 01 Aug 2015 at 19:49

Thanks Julie, Kev, Marje and Sandra.

I don't want to do my nurse an injustice. She did use the word in a very qualified way and I did understand what she meant. She did also use the word incurable.

With all the reading I have been doing, together with, especially, the kind comments and advice on this forum, I think I have got a good measure of where I am and what the future potentially holds.

I don't feel in any way ill at the moment and I am carrying on with life in much the same way I did before. The only issue I have is that I do get unbelievably tired by around 5pm each day. I think this is a side effect of the hormone treatment rather than the cancer itself. I am trying to plan ahead with what I do so that by that time I can turn into relax mode.

Thanks to each of you for your kind words and advice.

Peter

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