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Just Diagnosed T4 Metastatic (Bone)

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User
Posted 07 Dec 2020 at 10:59

Hi, I’m 59 and was diagnosed last week (Dec 1st) with T4 Metastatic Prostrate Cancer (Bone).

 

Other than suffering urinary symptoms consistent with a previously diagnosed benign enlarged prostrate generally speaking I have been fit and well, however,  a recent blood test identified a PSA level of 61 . I was referred to Urology and then for further investigation. Unfortunately the MRI and Bone Scan confirmed the presence of prostrate cancer and that the cancer had spread to the bone (pelvis, back and chest).  

 

At present I am struggling to rationalise the situation as this is terminal, I have started hormone therapy to hopefully arrest to spread of the cancer if only temporarily. The future is very much a unknown and I am hoping to connect with and learn from others who have experienced same/similar .

 

Best Regards 

User
Posted 07 Dec 2020 at 11:42
Hi Joaquin, it isn't terminal, just incurable ... the difference is massive. A significant number of men diagnosed with metastatic prostate cancer live for many, many years - we have men here who are 10 - 15 years into their journey. Many find that once the shock of diagnosis has worn off, life continues pretty much as it did before - the side effects of the HT can make some things more difficult (fatigue, for example) but most continue going to work, playing sport and having holidays (pre-Covid, obviously) and you might be inspired by people like Irun who has spent the 5 years since he was diagnosed with extensive bone mets running extreme marathons.

Has the oncologist suggested that you have early chemo? If not, ask why.

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

User
Posted 08 Dec 2020 at 11:40

Just  a short message  to say ‘Many Thanks’ to everyone for replying and sharing your personal experiences it is very much appreciated. 

Its one week since my diagnosis I am just waiting upon an update post MDT meeting. The future remains uncertain but I feel calmer and more positive thanks to you all. 

 

Best Wishes to all  

Regards

Joaquin 

 

Edited by member 08 Dec 2020 at 11:41  | Reason: Spelling correction

User
Posted 07 Dec 2020 at 19:40

Hi Joaquin

Sorry you find yourself here. I was in your shoes a couple of years ago. My Oncologist treated my incurable cancer with hormone therapy, chemotherapy and radiotherapy.

Check my profile that tells the story.

Good luck.

Johnl

User
Posted 07 Dec 2020 at 20:09
Remember also that a lot of information is retrospective, some going back many years. Refinement of treatment is ongoing with new ones being introduced giving patients a better chance of extending the time they would have had in the past. So stay cautiously optimistic.
Barry
User
Posted 07 Dec 2020 at 20:10

Hi Joaquin,

That's a good post by Lyn at 11.42.   

If I may add that being diagnosed is a shock like the grieving process:  shock and denial, anger, bargaining, depression, working through to acceptance.  If you get stuck at a stage take advice. 

I recall wakening in the night feeling normal but thinking something is wrong then suddenly remembering and my heart beating faster.  That lasted quite a while although I was diagnosed later at a lower Stage than you.

I also recall a person at work being mocked for having a file of memos to people that weren't sent.  Yet many years later that was said to be a good way of working through complicated matters.   There have been a few people on here lately writing about recording their status.

You might find an insatiable need for information now but it should settle.  There is a lot of stuff on here although sometimes you can find things that make you more worried and after a while you learn to avoid certain items.  Every case seems to be different it's quite amazing.

I hope I'm not teaching you suck eggs and the MDT come up with some good advice.   The Macmillan Nurses are very good.

All the best,
Peter

 

User
Posted 07 Dec 2020 at 21:50
Hi Joaquin,

I was diagnosed with metastatic incurable prostate cancer in July 2016 with a PSA 67. Urinary issues were also my only symptoms. My profile is up to date so you will see that my original treatment has stopped working but I can honestly say that since I started treatment I haven’t had one single symptom caused by cancer. I know this will change and it’s too early to say how successful Enzalutamide is going to be but my consultant is, so therefore so am I, optimistic.

All the best

Dave

User
Posted 11 Dec 2020 at 12:56

Hi Joaquin, 

I ll just echo what others have said. My husband was diagnosed 18 months ago with incurable advanced prostate cancer.

It was my first thought every morning, and all day, then a few months in, one day I woke up and I was thinking about something else. People on here said the shock would wear off, I didn't believe them, but it does.

I wish you all the best with your treatment and make the most of this forum - its brilliant. 

You will always get support here and no nonsense honest advice from Lyn. Hope she doesn't mind me saying that!

 

Edited by member 11 Dec 2020 at 12:59  | Reason: Not specified

Mrs MAS

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User
Posted 07 Dec 2020 at 11:42
Hi Joaquin, it isn't terminal, just incurable ... the difference is massive. A significant number of men diagnosed with metastatic prostate cancer live for many, many years - we have men here who are 10 - 15 years into their journey. Many find that once the shock of diagnosis has worn off, life continues pretty much as it did before - the side effects of the HT can make some things more difficult (fatigue, for example) but most continue going to work, playing sport and having holidays (pre-Covid, obviously) and you might be inspired by people like Irun who has spent the 5 years since he was diagnosed with extensive bone mets running extreme marathons.

Has the oncologist suggested that you have early chemo? If not, ask why.

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

User
Posted 07 Dec 2020 at 12:27

Hi Lyn, many thanks for your prompt and reassuring response. 

 

A week on and I am only just about beginning to rationalise everything. At present I’m suffering from ‘Google overload’ so just trying to clear my mind and slow the thought process down, to try and focus upon the possible positive options and outcomes. 

 

My case will be discussed at this weeks ‘MDT’ team meeting, shortly after I will receive an update.  Early chemo as not been suggested but I will be sure to ask. 

 

Thanks again 

Best Regards

Joaquin 

User
Posted 07 Dec 2020 at 13:35
Yes, Dr Google is tempting but generally not helpful - try to stick to the information provided on the PCUK, Cancer Research UK and Macmillan websites.

If not already done so, either download the toolkit from this website or call the specialist nurses on the number at the top of the page and order a hard copy. The toolkit has everything you need to know about the different diagnoses, treatment options and likely side effects.

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

User
Posted 07 Dec 2020 at 14:17

The majority of my reference sources have indeed been PCUK, Cancer Research UK and Macmillan, I also have reams of paper documents from the Nurse Specialist that I have not yet fully read. Outside of this I have been reading a number of research studies (papers) from various institutions world wide but I have become too fixated upon the statistical data which is not helpful mostly because it’s often depressing and is difficult to fully interpret because the standard deviation data is not included. 

 

I am currently pulling together a list of questions referencing the above sources before calling the Nurse Specialist tomorrow. 

 

Best Regards 

Joaquin 

User
Posted 07 Dec 2020 at 19:40

Hi Joaquin

Sorry you find yourself here. I was in your shoes a couple of years ago. My Oncologist treated my incurable cancer with hormone therapy, chemotherapy and radiotherapy.

Check my profile that tells the story.

Good luck.

Johnl

User
Posted 07 Dec 2020 at 20:09
Remember also that a lot of information is retrospective, some going back many years. Refinement of treatment is ongoing with new ones being introduced giving patients a better chance of extending the time they would have had in the past. So stay cautiously optimistic.
Barry
User
Posted 07 Dec 2020 at 20:10

Hi Joaquin,

That's a good post by Lyn at 11.42.   

If I may add that being diagnosed is a shock like the grieving process:  shock and denial, anger, bargaining, depression, working through to acceptance.  If you get stuck at a stage take advice. 

I recall wakening in the night feeling normal but thinking something is wrong then suddenly remembering and my heart beating faster.  That lasted quite a while although I was diagnosed later at a lower Stage than you.

I also recall a person at work being mocked for having a file of memos to people that weren't sent.  Yet many years later that was said to be a good way of working through complicated matters.   There have been a few people on here lately writing about recording their status.

You might find an insatiable need for information now but it should settle.  There is a lot of stuff on here although sometimes you can find things that make you more worried and after a while you learn to avoid certain items.  Every case seems to be different it's quite amazing.

I hope I'm not teaching you suck eggs and the MDT come up with some good advice.   The Macmillan Nurses are very good.

All the best,
Peter

 

User
Posted 07 Dec 2020 at 21:50
Hi Joaquin,

I was diagnosed with metastatic incurable prostate cancer in July 2016 with a PSA 67. Urinary issues were also my only symptoms. My profile is up to date so you will see that my original treatment has stopped working but I can honestly say that since I started treatment I haven’t had one single symptom caused by cancer. I know this will change and it’s too early to say how successful Enzalutamide is going to be but my consultant is, so therefore so am I, optimistic.

All the best

Dave

User
Posted 08 Dec 2020 at 11:40

Just  a short message  to say ‘Many Thanks’ to everyone for replying and sharing your personal experiences it is very much appreciated. 

Its one week since my diagnosis I am just waiting upon an update post MDT meeting. The future remains uncertain but I feel calmer and more positive thanks to you all. 

 

Best Wishes to all  

Regards

Joaquin 

 

Edited by member 08 Dec 2020 at 11:41  | Reason: Spelling correction

User
Posted 11 Dec 2020 at 12:56

Hi Joaquin, 

I ll just echo what others have said. My husband was diagnosed 18 months ago with incurable advanced prostate cancer.

It was my first thought every morning, and all day, then a few months in, one day I woke up and I was thinking about something else. People on here said the shock would wear off, I didn't believe them, but it does.

I wish you all the best with your treatment and make the most of this forum - its brilliant. 

You will always get support here and no nonsense honest advice from Lyn. Hope she doesn't mind me saying that!

 

Edited by member 11 Dec 2020 at 12:59  | Reason: Not specified

Mrs MAS

User
Posted 11 Dec 2020 at 13:44

Hi Mrs MAS

Many Thanks for your reply. 

Still in shock but have moved on massively since last week. Awaiting update post yesterdays MDT meeting - hopefully today  

For now I have tried to reset my mindset focusing upon the positives. First action as been to book holiday(s) for next year - Covid permitting of course. 

Regards 

Joaquin  

 

 

 

 

 

User
Posted 28 Dec 2020 at 16:22

Hi everyone

I've just come across this Community site--strange, because I have been browsing Prostate Cancer UK material since I was diagnosed with Advance Prostate Cancer last April.  I'm 83 years of age and in general good health, but jump in my biennial PSA reading came too late--the cancer was already well into my bones.  Since then I have been having the standard Firmagon-Zometa-Zytiga-Dexamethasone treatment, as well a single dose of radiotherapy (to treat back pain).  As I understand sometimes happens, the hormone regime worked well for a few months, but my PSA is up to 30 again now, and the doctor says we need to think of chemo in the new year.

 

The weird thing is that since the pain was dealt with last May, I have been in excellent form.  I have always had an optimistic outlook on life, but it's getting ridiculous--I feel very happy all the time!  Keenly awaiting the relaxation of COVID-19 restrictions so that my wife (a breast cancer survivor from 6 years ago) and I can plan a holiday in the sun.  It certainly helps that I'm not experiencing significant pain.  I suppose that will come.  

 

I would be interested to know if there are other men out there with similar profiles who are having chemo, or who are contemplating it, and to hear of any other routes that I should be investigating.

User
Posted 28 Dec 2020 at 17:16

Posts like this are why I use these forums. I’ve been initially diagnosed with PC prior to a bone scan tomorrow which, in my pessimistic current mood, I’m predicting will show that it’s spread throughout my entire body! I immediately then begin to pick my funeral song (King of the Road). @LynEyre defining incurable as not necessarily terminal has lifted my morale considerably so thank you Lyn! I see the path ahead as confined to prostate - curable, spread - incurable but not immediately terminal. 10 - 15 years will do me right now!

User
Posted 29 Dec 2020 at 08:16
Hi Bazzer 77 ,my husband Gary was 55 when diagnosed with Gleason 4+5 and PSA23 .His had spread to lymph nodes and deemed incurable .He had early chemo and has been on the stampede trial ever since .As Lynn has said incurable doesn’t have to be an immediate death sentence,Gary has carried on working and doing most things the same as before ,maybe a bit slower due to the effects of the drugs but he believes life is for living so very rarely gets down .

By the way that was 5YRS ago this month !

Best wishes

Debby

User
Posted 29 Dec 2020 at 08:42
Thanks Debby positive news is so important at the early stage. I’m anticipating bad news from the bone scan but that’s just me! Hopefully the results will be conveyed ASAP to let me begin the processing and planning either way. I’m having quite an anxious time at the moment but a lot of that is the unknowing.

I think we need a new word for cancer because it’s got a finality connotation to it whereas we know that’s not necessarily the case.

Anyway thanks again and fingers crossed

 
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