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Diagnosed with t3a n0 m1 cancer

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User
Posted 06 Jun 2018 at 14:37

Hi all. 

I was diagnosed with t3a n0 m1 prostate cancer on 23rd April, by urology consultant. Its gone into my pubic bone but nowhere else. I've also got a gleason score of 7. Urology said it sounds bad but, with hormone treatment and chemo I've got years in the tank. I felt OK.

Fast forward to two days ago. I go to see my oncologist for the first time. I didn't take any notes, as I felt urology had covered it all. I was asked if I knew what the diagnosis was and I explained I'd been told I had locally advanced PC that had gone into my public bone. As far as I was aware the hormone injections would keep the cancer in check with chemo to kill the cancer in the bone... and I had years in the tank.

Well... apparently I've got 3 to 4 years. 

In addition, it was suggested that I only have hormone injections at this time; however if my wife and I feel we want me to have chemo he would be happy to put us in for it. In addition the chemo doesn't kill the cancer in the bone, it merely controls that too. 

STAMPEDE was mentioned by urology previously and we did broach this on Monday . Oncologist said there are lots of trials (5 orr more)  that may be available to us.

Anyway, we left the meeting absolutely devastated. Most of what we had been told was forgotten in the fog of '3 to 4 years'.

Next day I received information from the oncology dept about STAMPEDE. So, I'm confused now.

I'm sure others have been in the same position, but we just feel like a rug has been pulled from under us. I was really positive going into the Monday meeting but now.... the worst thing was trying to explain to my youngest son. He said 'you told me it wasn't terminal'. I did try to explain that 3 to 4 years is worse case and the treatment is going to give me much longer.

We've got a further meeting with the oncologist this Friday and we are prepared with questions this time.

I suppose what I really want to know is:

-how do they know its 3 to 4 years? 

-is it normal just to have hormone injections when you're a t3a n0 m1? 

-should I push for chemo now and can I have chemo later on if I've already had it? 

Sorry for the long post. 

User
Posted 23 Jul 2018 at 00:40
Assume the prostate is an orange in a fruit bowl.

T3 is where the cancer has broken through the orange peel and is bulging out. (T3a - it is only on the orange / T3b - it has also spoilt the paper the orange is wrapped in)

T4 is where it has broken out and is also now on the apples in the bowl (the apples might be the bladder or bowel, perhaps)

M1 - it has spread to the bananas which were on the table (bones, liver, lung, etc)

N1 it has spread to some cherries that were lying on the table (lymph nodes)

Sometimes the cancer hasn't spread to the apples but it has jumped out of the bowl to the bananas or cherries (T3 N1 M1)

Sometimes the cancer has only made it as far as a few cherries that are right next to the bowl (locally advanced) but in other cases, it has gone into loads of cherries (advanced)

Your diagnosis of T3 N1 M1 means that although cancer cells migrated to your bones and lymphatic system, there isn't a massive tumour that has burst out of your prostate and moved into your bladder, bowel or pelvic wall

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

User
Posted 18 Jul 2018 at 16:06
John, I confess to getting quite annoyed when oncologist guesses are accorded the ststus of inviolable truths. Your oncologist has no idea how long you will live or whether you will die with PCa or of it. You seem to be focussed on your end when you need to think about your survival. Your PSA is low, your Gleason score is low, you are at the start of a treatment path with many options ahead. By all means make the sensible precautions you list, but please get on with enjoying life whilst you take on board the various treatments available. I was once told, eleven years ago, five years maybe. I ain't done yet! With positive thinking, which I recommend, you may enjoy many fruitful years yet.

Good luck

AC

User
Posted 06 Jun 2018 at 22:50

There will be many ups and downs during your treatment. The truth is no-one can really predict how much life you have left, the consultants can only give you their "best guess" based on experience of treating many men at the various stages on diagnosis.

My Urologist told me very kindly and very subtly at my original diagnosis, that the best I could hope for would be 5 years, but more realistically, I would be doing well if I got to 3 years. My Oncologist subsequently told me that his estimate of my remaining life was 18-24 months! Well, here I am just approaching that 3 year anniversary and with no intention of departing this mortal coil just yet!

I have since been told by my specialist nurse that I have "years ahead of me yet". That was said in February this year. You will find many men on this site who were given a diagnosis similar to yours (and mine) 14 or 15 years ago.

So much will depend on how well the treatment works for you and for how long and also how new treatments currently under development will work. My own treatment path has so far consisted of HT (which worked for 15 months), followed by HT + Abiraterone (worked for a further 10 months) and then Docetaxel chemotherapy (which is the latest treatment I have had). I am now being proposed for two trials for new drugs or drug combinations. So life goes on!

With regards to the chemo at your stage, well I wasn't offered it. 3 years ago it wasn't common practice to start chemo so early on. But I believe (and please check this with your onco) that one of the early findings of the Stampede trial was that early chemo can make the HT work for longer. So it is certainly worth considering.

I need to stress that I am no expert, but all I have said above is what I have gone through. We are all different.

Following my original prognosis, I started to put my various affairs in order, so that is done. It now seems I was very premature in doing that, but it wasn't time wasted. It is done and ready now. Hopefully, it will be many years yet before anyone needs to make use of my preparations. I hope it is the same for you too.

User
Posted 07 Jun 2018 at 07:25
My medicinal oncologist said much the same to me based on my personal stats. After surgical removal at 48 but awful post op results , he told me eventually at the age of 50 that I may have 18 to 24 months before my Mets were found , and then maybe 3 to 4 years of HT and Chemo. That would see me in my grave by 56 yrs old. It’s a daily worry to be sure. I am enjoying the time I have now loads but it is clouded with stress and drinking too much. I’m 51 today and my psa is approx 50 so I guess his figures are on track. I haven’t decided what future treatments to have , but I don’t fancy Chemo at all. Good luck with everything and great advice from the others
User
Posted 07 Jun 2018 at 07:27
Hi DonutBoy, I'm so sorry to hear of your diagnosis. My dad's prostate cancer is T3b N0 M1 (just 1 met showing on the pelvic bone) - Gleason 4+3. The Urologist confirmed this to him last week and said the MDT have suggested chemo straight away, alongside his HT (degarelix). I've since learnt off this forum that recent trials have indicated the HT drugs are more likely to work longer with early chemo. Dad has yet to meet the Oncologist (waiting for appointment to come through). I'm going with him so I'll be sure to update you once we've had the meeting about his planned treatment and the logic given behind this. Take care x
User
Posted 06 Jun 2018 at 16:15

Sounds like you need a second opinion. I believe ajuvant chemo and hormone blockade are now the normal treatment because it has been proven to offer a significant survival benefit.

If it' still localised (t3?) I would also be asking if radio therapy could be any use as I believe some trials have proven a benefit even when there has been spread. 

Be prepared for your consultation with lots of questions and don' let them "palm you off"!

User
Posted 06 Jun 2018 at 23:02
Some urologists have a tendency to gloss over the bad news - once the diagnosis makes clear that an oncologist is needed, the urologist is a bit out of their comfort zone I guess. Having said that, it does sound like your onco is a touch heavy on the doom & gloom.

Important thing to clarify - where you diagnosed with adenocarcinoma or a more rare type of prostate cancer? Some rare types do not respond well to HT.

Chemo doesn't kill any prostate cancer wherever it is. What it does do is critically injure the cancer cells so that they are weakened and less able to overcome the testosterone blockade too quickly. On the other hand, chemo is very toxic and we have had a member die recently due to complications although we have another that has been able to continue working throughout.

Lots to think about but there is no harm starting the HT while you are thinking.

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

User
Posted 07 Jun 2018 at 00:16

Firstly, consultants are in a difficult position when discussing a PCa diagnosis with a patient who is almost inevitably shell shocked. Some men want to know how bad their prospects are whilst others don't know what are most often just guestimates . Mostly it is not possible to know with sufficient certainty how much survival time an individual has which can be further distorted by new forms of down the line treatment as this becomes available in the battle with PCa. My opinion is that other than in cases where there is a strong possibility that a man would die within a very few months and would ideally need to ensure necessary arrangements were in place for his demise, a consultant should not volunteer an opinion on the man's mortality unless expressly asked to do so, and even then make it clear that it is very much a guestimate and could be quite wrong. I feel the consultant should concentrate on the positives of which taking part in trials as appropriate mean access to latest treatments and protocols and closer scrutiny of the way a patient responds.

Some of the newer down the line treatments include nuclear material such as radium 223 and Lu 177 and forms of immunotherapy so more men will have their lives extended as such treatments develop and are used when more traditional treatments prove inadequate for some men.

Whilst I agree with Lyn that Chemo damages the DNA of cancer cells (as does radiation but only to more specifically treated areas), I think it is wrong to say Chemo doesn't kill any Prostate Cancer cells wherever it is. There are many reliable sources that say it does. Here is one from Cancer Research UK http://www.cancerresearchuk.org/about-cancer/prostate-cancer/advanced-cancer/advanced-treatment/chemotherapy/chemotherapy-treatment

 

Edited by member 07 Jun 2018 at 00:31  | Reason: Not specified

Barry
User
Posted 14 Jun 2018 at 08:06
Hi donutboy,

Iam also t3am1no with mets in bones of hips, vertebra and shoulders. Later dx more vertebra affected but this has steadied. PSA was 394. After dx i had six months on HT and then chemo which brought psa down to 3 and intially cancer in boners had reduced. From experience everyone reacts differently to treatment but having chemo was a good start. Ive been advised that i could have further chemo down the treatment route after other treatments. As for lenght of time, i dont think anyone can put a 3-4 year timescale, i know dr google does but iam starting year 4 and dont feel any different from year 1 or even before! Iam of the opinion take whatever treatment is going but found chemo not as bad as anticipated.

Hope it helps

Steven

User
Posted 18 Jul 2018 at 18:16
Hi AC, it does make me wonder how Oncologists are able to confidently comment on lifespan after diagnosis. I'm sure when Bill Turnbull (newsreader) came out publicly with his advanced PCa, I read that his Oncologist said he was hopeful Bill would still be around for 15+ years, and that's with extensive bone mets!?!? That's great news for others in a similar situation if that is, in fact, realistic. I certainly do hope so!
User
Posted 18 Jul 2018 at 21:35
Donutboy, did they say that you have a particularly rare type of cancer or anything like that? We have so many men now with M1 who live for years and years; I dont get why your onco is so pessimistic.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Jul 2018 at 23:28

Hi lisabun

I recall reading about Bill Turnbull, but I didn't realise he had advanced PCa. The 15 plus years suggested by his oncologist really does show how far guesstimates can swing. It has to be based on oncologist experience of people of similar age, general health and so in. If he can get 15 years then I'm expecting to have a minimum of 20. 😊

Cheers

John 

 

User
Posted 20 Jul 2018 at 09:10

Hi Donutboy

I've just been reading your thread. My OH was diagnosed in march... Localised advance .. PSA 26.3 Gleason 7 with 3 tiny dots on pelvic bone.

His oncologist was very positive and although she said she hasn't a crystal ball.. She expects him to be around for many many years.

He has gone in the stampede trial and has chosen to have earthy chemo along with HT Prostap.

His PSA is now down to 0.2 and he has just completed his 3td cycle of docetaxel, with minimal side affects.

Hope this helps

Thanks

Karen

User
Posted 20 Jul 2018 at 10:42

Hi John

The oncologist recommended it but it was our decision in the end,but we are very happy with our consultant and trust her judgement. 

He's also been lucky with the chemo gets minimal side effects and is still working.. All be it from home. ( Usually works abroad) and life continuing as normal (a new normal).

He started his chemo 6 weeks after starting Prostap .

 

Karen

User
Posted 20 Jul 2018 at 12:12
Hi John,

My dad's cancer is T3b - locally advanced and has spread to the seminal vesicles (Gleason 4+3). Originally he was told he had one met on pelvic bone and his cancer was advanced. The plan at this point was to give him early chemo alongside HT as he was informed that recent trial results have shown early Chemo can make the HT more effective for longer - it is perhaps something to consider/raise when next seeing your Oncologist.

A month after the Urologist broke the news that Dad's cancer was incurable, he met his Oncologist. She said the MDT had reviewed his results/scans again (she had been away during the initial review) and have decided that the pelvic bone met is more likely in fact to be a non-cancerous bone island. His treatment path has now changed to HT with radiotherapy and his treatment is potentially curative.

We met with her again this Tuesday to discuss the Stampede trial (metformin arm). One thing to note was she commented that even with his new (more favourable) diagnosis, had his Gleason been 4+4 or above rather than 4+3, she would have still considered introducing early Chemo as this has been found to be of benefit to men diagnosed with locally advanced pca without spread to the bone. There seems to be significant disparity between the approaches used by different oncologists but my understanding is that early chemo for PCa that has spread to the bone has recently become a more standard approach to treatment. It's obviously a very personal choice but one to be considered. I wish you well.

Lisa x

User
Posted 20 Jul 2018 at 20:36

Hi John,

I’m new to the website and in a similar place to you. There are lots of us out here. My express ride to hell started in April 18, figured I would start collecting data on my prostate at age 53. 😂 fist reading 7.5 and I just knew I was in the shoot.

If you all think about your journey this far we have gone through multiple layers of medical professionals who have all been at best overly optimistic at worst unrealistic. We forget that they are trained to manage us through the layers of disappointment it’s a skill. I had to get past 3 GPS who told me I had nothing to worry about. 2 DRE’s undetectable, smooth prostate nothing of concern. Private urologist who told me I had nothing but a UTI and an NHS queue at the leading London centre pretending to be a same day service, one stop shop diagnosis centre that turned out to be one month long queue management centre to get here today.

MRI staging - Risk of microscopic t3a, leasion visible with capsular contact. Tumour confined so T2

Biopsi. Gleason 3+4 medical staging t2c, PSA 7.5 - Here I dogged my first bullet. Private biopsy (saturation 24 core sample) at my request completely contradicted MRI. If I had gone with the NHS targeted 4/8 core I would have missed a lot of info.

Consultation with leading Prof - called it t1a, surgeon 1 called it t2c, surgeon 2 called it t2B. Surgeon 1 said I would live to 80 and had more chance of dying of being run over by a cab and offered AS. Everyone saying it’s treatable.

RALP in June, now at the six weeks PSA check everyone expecting to get zero PSA and pop a cork. But not me, I knew it would be bad, and so it goes on ... At consultation PSA is detectable at 0.03 I’m sold more rubbish and told it will drift to undetectable - I go home and calculate for myself where I should be using the PSA half life calculator. I should be zero!

Cosultation was like being told I had cancer all over again. Earth moving. Histology now says t3a NX MX. I’m told that it was actually a negative margin because the cancer never passed the nerve bundle.

You know what. I don’t believe a word of it. You cannot let your guard down. Not a single medical professional has made a reliable call in my case. Not once.

Fresh

Edited by member 20 Jul 2018 at 21:22  | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 20 Jul 2018 at 22:49

Oh for Goodness sake! 0.03 is an undetectable result - you should be out celebrating! There is no such thing as a zero PSA result (apart from in an exceptionally rare circumstance) 

Edited by member 20 Jul 2018 at 22:51  | Reason: Not specified

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

User
Posted 23 Jul 2018 at 07:57

Thanks Kazzy

I look forward to hearing that all is going well. I'm going to have a chat with my oncologist on 6th August, to put my mind at ease that not going on chemo now isn't a case of shooting myself in the foot.

It's very, very difficult, and a little disconcerting, when people with similar (on the face of it) diagnoses get diverse treatment plans.

All the best

John

Show Most Thanked Posts
User
Posted 06 Jun 2018 at 16:15

Sounds like you need a second opinion. I believe ajuvant chemo and hormone blockade are now the normal treatment because it has been proven to offer a significant survival benefit.

If it' still localised (t3?) I would also be asking if radio therapy could be any use as I believe some trials have proven a benefit even when there has been spread. 

Be prepared for your consultation with lots of questions and don' let them "palm you off"!

User
Posted 06 Jun 2018 at 16:49

Thanks for the quick reply. 

I've got my questions lined up, ready for Friday and will post an update over the weekend. 

Cheers

User
Posted 06 Jun 2018 at 22:50

There will be many ups and downs during your treatment. The truth is no-one can really predict how much life you have left, the consultants can only give you their "best guess" based on experience of treating many men at the various stages on diagnosis.

My Urologist told me very kindly and very subtly at my original diagnosis, that the best I could hope for would be 5 years, but more realistically, I would be doing well if I got to 3 years. My Oncologist subsequently told me that his estimate of my remaining life was 18-24 months! Well, here I am just approaching that 3 year anniversary and with no intention of departing this mortal coil just yet!

I have since been told by my specialist nurse that I have "years ahead of me yet". That was said in February this year. You will find many men on this site who were given a diagnosis similar to yours (and mine) 14 or 15 years ago.

So much will depend on how well the treatment works for you and for how long and also how new treatments currently under development will work. My own treatment path has so far consisted of HT (which worked for 15 months), followed by HT + Abiraterone (worked for a further 10 months) and then Docetaxel chemotherapy (which is the latest treatment I have had). I am now being proposed for two trials for new drugs or drug combinations. So life goes on!

With regards to the chemo at your stage, well I wasn't offered it. 3 years ago it wasn't common practice to start chemo so early on. But I believe (and please check this with your onco) that one of the early findings of the Stampede trial was that early chemo can make the HT work for longer. So it is certainly worth considering.

I need to stress that I am no expert, but all I have said above is what I have gone through. We are all different.

Following my original prognosis, I started to put my various affairs in order, so that is done. It now seems I was very premature in doing that, but it wasn't time wasted. It is done and ready now. Hopefully, it will be many years yet before anyone needs to make use of my preparations. I hope it is the same for you too.

User
Posted 06 Jun 2018 at 23:02
Some urologists have a tendency to gloss over the bad news - once the diagnosis makes clear that an oncologist is needed, the urologist is a bit out of their comfort zone I guess. Having said that, it does sound like your onco is a touch heavy on the doom & gloom.

Important thing to clarify - where you diagnosed with adenocarcinoma or a more rare type of prostate cancer? Some rare types do not respond well to HT.

Chemo doesn't kill any prostate cancer wherever it is. What it does do is critically injure the cancer cells so that they are weakened and less able to overcome the testosterone blockade too quickly. On the other hand, chemo is very toxic and we have had a member die recently due to complications although we have another that has been able to continue working throughout.

Lots to think about but there is no harm starting the HT while you are thinking.

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

User
Posted 07 Jun 2018 at 00:16

Firstly, consultants are in a difficult position when discussing a PCa diagnosis with a patient who is almost inevitably shell shocked. Some men want to know how bad their prospects are whilst others don't know what are most often just guestimates . Mostly it is not possible to know with sufficient certainty how much survival time an individual has which can be further distorted by new forms of down the line treatment as this becomes available in the battle with PCa. My opinion is that other than in cases where there is a strong possibility that a man would die within a very few months and would ideally need to ensure necessary arrangements were in place for his demise, a consultant should not volunteer an opinion on the man's mortality unless expressly asked to do so, and even then make it clear that it is very much a guestimate and could be quite wrong. I feel the consultant should concentrate on the positives of which taking part in trials as appropriate mean access to latest treatments and protocols and closer scrutiny of the way a patient responds.

Some of the newer down the line treatments include nuclear material such as radium 223 and Lu 177 and forms of immunotherapy so more men will have their lives extended as such treatments develop and are used when more traditional treatments prove inadequate for some men.

Whilst I agree with Lyn that Chemo damages the DNA of cancer cells (as does radiation but only to more specifically treated areas), I think it is wrong to say Chemo doesn't kill any Prostate Cancer cells wherever it is. There are many reliable sources that say it does. Here is one from Cancer Research UK http://www.cancerresearchuk.org/about-cancer/prostate-cancer/advanced-cancer/advanced-treatment/chemotherapy/chemotherapy-treatment

 

Edited by member 07 Jun 2018 at 00:31  | Reason: Not specified

Barry
User
Posted 07 Jun 2018 at 07:25
My medicinal oncologist said much the same to me based on my personal stats. After surgical removal at 48 but awful post op results , he told me eventually at the age of 50 that I may have 18 to 24 months before my Mets were found , and then maybe 3 to 4 years of HT and Chemo. That would see me in my grave by 56 yrs old. It’s a daily worry to be sure. I am enjoying the time I have now loads but it is clouded with stress and drinking too much. I’m 51 today and my psa is approx 50 so I guess his figures are on track. I haven’t decided what future treatments to have , but I don’t fancy Chemo at all. Good luck with everything and great advice from the others
User
Posted 07 Jun 2018 at 07:27
Hi DonutBoy, I'm so sorry to hear of your diagnosis. My dad's prostate cancer is T3b N0 M1 (just 1 met showing on the pelvic bone) - Gleason 4+3. The Urologist confirmed this to him last week and said the MDT have suggested chemo straight away, alongside his HT (degarelix). I've since learnt off this forum that recent trials have indicated the HT drugs are more likely to work longer with early chemo. Dad has yet to meet the Oncologist (waiting for appointment to come through). I'm going with him so I'll be sure to update you once we've had the meeting about his planned treatment and the logic given behind this. Take care x
User
Posted 07 Jun 2018 at 23:42

Sorry Barry, I was simplifying in response to Donut saying “the chemo doesn’t kill the cancer in the bone” ... my point (badly made) was that the chemo wouldn’t cure his cancer even if he didn’t have bone mets.

 

However, on the CRUK link you have posted, it states:

”Aim of chemotherapy
Chemotherapy for advanced prostate cancer can relieve symptoms. It can also control the cancer and improve your quality of life for a time, but it can’t cure the cancer.”

Edited by member 07 Jun 2018 at 23:43  | Reason: Not specified

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

User
Posted 14 Jun 2018 at 08:06
Hi donutboy,

Iam also t3am1no with mets in bones of hips, vertebra and shoulders. Later dx more vertebra affected but this has steadied. PSA was 394. After dx i had six months on HT and then chemo which brought psa down to 3 and intially cancer in boners had reduced. From experience everyone reacts differently to treatment but having chemo was a good start. Ive been advised that i could have further chemo down the treatment route after other treatments. As for lenght of time, i dont think anyone can put a 3-4 year timescale, i know dr google does but iam starting year 4 and dont feel any different from year 1 or even before! Iam of the opinion take whatever treatment is going but found chemo not as bad as anticipated.

Hope it helps

Steven

User
Posted 18 Jul 2018 at 10:50

Apologies for the delay in replying, and thank you all for your replies.

I saw the oncologist again - he's a lovely man by the way - and he confirmed best guess at 3 to 4 years.

I've been on a bit of an emotional roller-coaster since then, sometimes feeling quite at peace but in my darkest times I've felt really low. Chief among my worries is the fact that my youngest son could have 70 years without me, he could forget me, etc. Same goes for my wife...  Will she be OK, will she have enough money, will she meet someone else, will she forget me? I'm sure I'm not alone. The problem is when I try to talk to my wife, when I'm ready, she's not. I do try to talk things through with my older sons but they don't want to either. So.. In the meantime  I'm 'spring cleaning' , getting things sorted, such as critical illness payout, ill health retirement, and my will finalised. 

As a result checking the Internet has been well down on my list. Again., profuse apologies. 

I don't think I'm as bad now; however, I do find the stupidest little thing can cause the tears to start.

Good news is my youngest son has started an apprenticeship and passed his driving test. He now has a newer car than his mum and dad 😊

I' started on my prostap injections back in early June, with the next one due end of August. The treatment hasn't gone without hitches, the worst of which has been the flaring. The breasts are OK as long as my sons don't t try to hug me too tight. I have also noticed that the constant peeing, that stopped when taking the bicalutamide, returned with a vengeance. It got so annoying that I mentioned it to the nurse at the GP surgery. She arranged a blood test last week to see if there was anything wrong. Hey presto... PSA score is down to 8.2 after a month and a bit of prostap. I've got abnormal liver reading and cholesterol is borderline high but who cares? 🤣 The GP has put me on alpha blockers to help with the peeing issues. I'm not taking them yet as, sods law, I'm feeling OK at the moment. 

In other news, I've said I'm happy to join the stampede trial if they will have me. I'm seeing the oncologist early August, so I expect to hear more about that then. I don't expect to be on chemo for some time, if the prostap keeps doing it's job. I've decided that the oncologist knows best, so I'm leaving it to him to decide. 

Next blood test is 1st August, just prior to oncologist visit.

I also had a visit from a lovely lady from Macmillan. She told me to push for prescription charge exemption, which I have done. Just waiting for the card now. She also put me in touch with the local St Barnabas hospice, and my wife and I visited last week for a chat. Again, lovely people and very welcoming. I'm there again solo next week to help me box the cancer and get on with my life. And... they do tai chi so I'm inclined to give it a go. I also intend to open up about my family worries I mentioned above. 

One final thing... the forms have actually gone off for ill health retirement. I'm now just waiting to hear if/when I get it. 

Thanks again everyone for your support. 

John 

 

 

User
Posted 18 Jul 2018 at 16:06
John, I confess to getting quite annoyed when oncologist guesses are accorded the ststus of inviolable truths. Your oncologist has no idea how long you will live or whether you will die with PCa or of it. You seem to be focussed on your end when you need to think about your survival. Your PSA is low, your Gleason score is low, you are at the start of a treatment path with many options ahead. By all means make the sensible precautions you list, but please get on with enjoying life whilst you take on board the various treatments available. I was once told, eleven years ago, five years maybe. I ain't done yet! With positive thinking, which I recommend, you may enjoy many fruitful years yet.

Good luck

AC

User
Posted 18 Jul 2018 at 18:16
Hi AC, it does make me wonder how Oncologists are able to confidently comment on lifespan after diagnosis. I'm sure when Bill Turnbull (newsreader) came out publicly with his advanced PCa, I read that his Oncologist said he was hopeful Bill would still be around for 15+ years, and that's with extensive bone mets!?!? That's great news for others in a similar situation if that is, in fact, realistic. I certainly do hope so!
User
Posted 18 Jul 2018 at 21:32
I rather assumed that that was a gloss for the sake of his family, to stop newspaper headlines like 'Turnbull terminally ill' or 'Turnbull dying' which is pretty much what happened anyway 😢

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

User
Posted 18 Jul 2018 at 21:35
Donutboy, did they say that you have a particularly rare type of cancer or anything like that? We have so many men now with M1 who live for years and years; I dont get why your onco is so pessimistic.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Jul 2018 at 23:18

Hi AC, 

I am actually OK with things now, or at least I'm getting there. I appreciate that the timeframe the oncologist gave me is a guess, based on what he's seen from other men in my position. I shouldn't have asked him in hindsight but, if I hadn't, I'd always be wondering 'how long '.  It's a starting place, and I expect to live a good few years yet. 

I'm certainly not giving up. 😀  I think, for me certainly, I felt I could cope better if I took back control. So, getting insurance sorted, getting will sorted and pushing for retirement allowed me to box those things off, not have to worry about leaving my family with financial or legal problems, or have to worry about work. 

Now they are sorted, I can get on with making sure I enjoy life to the full. 

Many thanks

John

 

 

User
Posted 19 Jul 2018 at 23:28

Hi lisabun

I recall reading about Bill Turnbull, but I didn't realise he had advanced PCa. The 15 plus years suggested by his oncologist really does show how far guesstimates can swing. It has to be based on oncologist experience of people of similar age, general health and so in. If he can get 15 years then I'm expecting to have a minimum of 20. 😊

Cheers

John 

 

User
Posted 19 Jul 2018 at 23:38

Hi LynEyre

I've just been told it's locally advanced in my prostate, with mets in pubic bone only. It isn't anywhere else. Gleason score of 7. Oncologist said I'm OK at the moment, which is why he wants to save chemo for when prostap isn't keeping things in check. 

PSA was 68, but is now 8.2 after starting on prostap. 

I'm not sure if he takes into account family history of cancer; both parents suffer with it currently.

I've definitely not been told it's anything out of the ordinary. 

Cheers

John

User
Posted 20 Jul 2018 at 09:10

Hi Donutboy

I've just been reading your thread. My OH was diagnosed in march... Localised advance .. PSA 26.3 Gleason 7 with 3 tiny dots on pelvic bone.

His oncologist was very positive and although she said she hasn't a crystal ball.. She expects him to be around for many many years.

He has gone in the stampede trial and has chosen to have earthy chemo along with HT Prostap.

His PSA is now down to 0.2 and he has just completed his 3td cycle of docetaxel, with minimal side affects.

Hope this helps

Thanks

Karen

User
Posted 20 Jul 2018 at 09:52

Hi Kazzy

That's brilliant news for your OH. 😊

Sounds great for me too that our diagnoses were so similar, and your OH has been told he's got years. It is all down to guesstimates then. 

I'm interested to know, if you're happy to say of course, if the decision to go early chemo was your OHs alone or if the oncologist recommended it.

I was happy to accept oncologist recommendation, but I'm conscious that I'm apparently supposed to start chemo within 3 months of starting prostap injections (though not sure exactly why... not sure if that classes as early).

Thanks

 

John

User
Posted 20 Jul 2018 at 10:42

Hi John

The oncologist recommended it but it was our decision in the end,but we are very happy with our consultant and trust her judgement. 

He's also been lucky with the chemo gets minimal side effects and is still working.. All be it from home. ( Usually works abroad) and life continuing as normal (a new normal).

He started his chemo 6 weeks after starting Prostap .

 

Karen

User
Posted 20 Jul 2018 at 12:12
Hi John,

My dad's cancer is T3b - locally advanced and has spread to the seminal vesicles (Gleason 4+3). Originally he was told he had one met on pelvic bone and his cancer was advanced. The plan at this point was to give him early chemo alongside HT as he was informed that recent trial results have shown early Chemo can make the HT more effective for longer - it is perhaps something to consider/raise when next seeing your Oncologist.

A month after the Urologist broke the news that Dad's cancer was incurable, he met his Oncologist. She said the MDT had reviewed his results/scans again (she had been away during the initial review) and have decided that the pelvic bone met is more likely in fact to be a non-cancerous bone island. His treatment path has now changed to HT with radiotherapy and his treatment is potentially curative.

We met with her again this Tuesday to discuss the Stampede trial (metformin arm). One thing to note was she commented that even with his new (more favourable) diagnosis, had his Gleason been 4+4 or above rather than 4+3, she would have still considered introducing early Chemo as this has been found to be of benefit to men diagnosed with locally advanced pca without spread to the bone. There seems to be significant disparity between the approaches used by different oncologists but my understanding is that early chemo for PCa that has spread to the bone has recently become a more standard approach to treatment. It's obviously a very personal choice but one to be considered. I wish you well.

Lisa x

User
Posted 20 Jul 2018 at 20:36

Hi John,

I’m new to the website and in a similar place to you. There are lots of us out here. My express ride to hell started in April 18, figured I would start collecting data on my prostate at age 53. 😂 fist reading 7.5 and I just knew I was in the shoot.

If you all think about your journey this far we have gone through multiple layers of medical professionals who have all been at best overly optimistic at worst unrealistic. We forget that they are trained to manage us through the layers of disappointment it’s a skill. I had to get past 3 GPS who told me I had nothing to worry about. 2 DRE’s undetectable, smooth prostate nothing of concern. Private urologist who told me I had nothing but a UTI and an NHS queue at the leading London centre pretending to be a same day service, one stop shop diagnosis centre that turned out to be one month long queue management centre to get here today.

MRI staging - Risk of microscopic t3a, leasion visible with capsular contact. Tumour confined so T2

Biopsi. Gleason 3+4 medical staging t2c, PSA 7.5 - Here I dogged my first bullet. Private biopsy (saturation 24 core sample) at my request completely contradicted MRI. If I had gone with the NHS targeted 4/8 core I would have missed a lot of info.

Consultation with leading Prof - called it t1a, surgeon 1 called it t2c, surgeon 2 called it t2B. Surgeon 1 said I would live to 80 and had more chance of dying of being run over by a cab and offered AS. Everyone saying it’s treatable.

RALP in June, now at the six weeks PSA check everyone expecting to get zero PSA and pop a cork. But not me, I knew it would be bad, and so it goes on ... At consultation PSA is detectable at 0.03 I’m sold more rubbish and told it will drift to undetectable - I go home and calculate for myself where I should be using the PSA half life calculator. I should be zero!

Cosultation was like being told I had cancer all over again. Earth moving. Histology now says t3a NX MX. I’m told that it was actually a negative margin because the cancer never passed the nerve bundle.

You know what. I don’t believe a word of it. You cannot let your guard down. Not a single medical professional has made a reliable call in my case. Not once.

Fresh

Edited by member 20 Jul 2018 at 21:22  | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 20 Jul 2018 at 22:49

Oh for Goodness sake! 0.03 is an undetectable result - you should be out celebrating! There is no such thing as a zero PSA result (apart from in an exceptionally rare circumstance) 

Edited by member 20 Jul 2018 at 22:51  | Reason: Not specified

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

User
Posted 21 Jul 2018 at 07:09

My husband was diagnosed in April - very similar results to yours - Gleason 4+3 =7, stage T3b N1 M1.  At no stage did his consultant give him a prognosis of life expectancy, just the comment ‘you have several years ahead of you, we can’t cure you but we can try to arrest it’. He took this as a positive and accepted the course of treatment recommended - hormone tablets initially, early chemo and participation in a Stampede trial. The trial started a month ago and consists of estradiol hormone patches, 4 placed on upper body, changed twice a week. Up to now he has felt fine, the only niggle is the patches can slip if he gets hot and sweaty and they initially left red raised patches but this is now lessening over time. He started his chemo last week. Feeling ok apart from aching legs and a little nausea last couple of days but his chemo nurse said that was to be expected as days 3, 4 and 5 after chemo can be when he will feel ‘a bit rough’, but then he should start picking up again. He has a positive outlook and takes each day as it comes. I know everyone isn‘t the same  and take bad news in different ways but try to be positive. You’ll get lots of help and support from many areas, including this website. 

User
Posted 22 Jul 2018 at 16:17

Lyn we need in this forum to agree on standards that will help everyone be equipped to challenge and verify their prognosis and also the medical professionals who are somethimes falling short.

CRUK call undetectable PSA at less than 0.02 so do all of the practitioners I am engaged with at a leading institution. So a measured PSA at 0.03 is not undetectable. I accept we are not seeking zeroes.

Its interesting to compare notes with my friends in Europe and America who measure PSA to a more precise level at 0.001 they use greater precision and never really use the terms zero/undetectable.

The reason I raised this point is the doughnut boy said his staging was t3a n0 m1 - that should be t4 right. M1 So that’s the first question I would ask

Fresh

Edited by member 22 Jul 2018 at 16:40  | Reason: Not specified

Base jumping without a parachute should be frowned at, never criticised. Fresh

User
Posted 22 Jul 2018 at 17:00

No, there is a difference between ‘undetectable’ and ‘detectable enough to be worth acknowledging’ - CRUK are clear that biochemical recurrence is marked at 0.2 or above and almost all the leading oncology centres have dropped usPSA as unreliable. It may be that testing to 3dp is still common overseas where there are commercial motivations for getting people to believe they need more treatment but that is going out of fashion now in England. My OH has had results to 2 or 3dp in the past. Strssing about a PSA of 0.03 is a waste of what should be happy times for you since a woman that just had a good orgasm or is breast feeding will have a higher PSA than yours. 

 

Having M1 doesn’t make a T3 into a T4. You can have a T1 and still have mets (M1) although it is quite rare.

Edited by member 22 Jul 2018 at 17:10  | Reason: Not specified

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

User
Posted 22 Jul 2018 at 23:08

Hi Lyn,

This is a question I have been thinking about a lot over the last few months. When does T3 become T4? My diagnosis was T3,M1,N1 with extensive mets. My understanding that was that any spread beyond "local" was defined as T4. Is this not correct?

Peter

User
Posted 23 Jul 2018 at 00:40
Assume the prostate is an orange in a fruit bowl.

T3 is where the cancer has broken through the orange peel and is bulging out. (T3a - it is only on the orange / T3b - it has also spoilt the paper the orange is wrapped in)

T4 is where it has broken out and is also now on the apples in the bowl (the apples might be the bladder or bowel, perhaps)

M1 - it has spread to the bananas which were on the table (bones, liver, lung, etc)

N1 it has spread to some cherries that were lying on the table (lymph nodes)

Sometimes the cancer hasn't spread to the apples but it has jumped out of the bowl to the bananas or cherries (T3 N1 M1)

Sometimes the cancer has only made it as far as a few cherries that are right next to the bowl (locally advanced) but in other cases, it has gone into loads of cherries (advanced)

Your diagnosis of T3 N1 M1 means that although cancer cells migrated to your bones and lymphatic system, there isn't a massive tumour that has burst out of your prostate and moved into your bladder, bowel or pelvic wall

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

User
Posted 23 Jul 2018 at 07:57

Thanks Kazzy

I look forward to hearing that all is going well. I'm going to have a chat with my oncologist on 6th August, to put my mind at ease that not going on chemo now isn't a case of shooting myself in the foot.

It's very, very difficult, and a little disconcerting, when people with similar (on the face of it) diagnoses get diverse treatment plans.

All the best

John

User
Posted 23 Jul 2018 at 08:03

Lisa

Thanks very much for the reply. 

I agree that there is this disparity about level/type of treatment, as in including the chemo or not early.

I'd read the info on the stampede trial that indicated early chemo was shown to have benefits. 

I will definitely be asking for more info/clarification at my next meeting.

I hope to hear good news for you moving forward. 

Kind regards 

John

User
Posted 23 Jul 2018 at 22:59

Hi Lyn,

Thank you for the explanation, that does make it much clearer. It was only an academic question anyway and a point of interest to me.

For the record, my complete diagnosis is as follows (quoted directly from my onco's summary)

T3 N1 M1c carcinoma of the prostate.

TRUS guided biopsy Gleason 4+5 cancer affecting all cores from the right lobe. Gleason 4+4 cancer affecting all cores from the left lobe.

It is all very confusing!

Apologies to DonutBoy for using his thread for this enquiry.

Peter

 

User
Posted 24 Jul 2018 at 08:20

Lynn / Fresh

0.2 is the internationally accepted level at which a biochemical recurrence has occurred. This does not mean you will die of cancer or that you even have to have more treatment it is just a figure that indicates if the treatment was RP it has probably failed.

"Undetectable" depends on the assay being used so if the level is 0.05 and you use the 0.1 test you will be "undetectable". If you use the 0.001 test you will be 0.050 ie detectable. There is no accepted definition of undetectable since the USPSA was invented.

Fresh

Even in the USA where USPSA is routinely used some institutions are reverting to the standard (0.1) assay because of the lack of tangible benefit from testing to 0.001. This is because people with adverse pathology at RP tend to get ajuvant radiotherapy anyway regardless of PSA. There is some research that suggests a post surgery PSA of 0.03 is "indicative" that further treatment will be required but this is not widely accepted and there are enough guys out there with detectable stable PSA to prove that it is worth waiting for a definite PSA rise before risking the  potential side effects of radiation treatment.

Finally the same research that came up with the 0.03 figure also confirmed there is very little risk in waiting to hit the 0.1 threshold. The nomogran below shows this:

http://riskcalc.org/ProstateCancerAfterRadicalProstatectomyNew/

 

Edited by member 24 Jul 2018 at 11:46  | Reason: Not specified

User
Posted 24 Jul 2018 at 11:33

Useful response fracij but when you reply using quote, click your cursor after the last bracket and drop down one line. Then your response appears below the item you are quoting which is easier for everyone else to follow.

Edited by member 24 Jul 2018 at 11:34  | Reason: to add italics

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

 
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