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Worried in shock and what my outlook is at 39 Years old

User
Posted 15 Oct 2020 at 14:20

Hi Everyone

I am trying to get over the shock of just being diagnosed with Prostate cancer that was found by accident during some investigations into low testosterone which had been linked to depression and sleeping difficulties. They carried out extensive blood tests and it just was pure luck that PSA was part of these tests. When i say luck it really was luck as the endocrinologist requested these tests before considering me for testosterone replacement therapy which would have fed the cancer massively.

I have so many questions and having not seen my oncologist face to face yet am finding it hard to accept and look forward. I never thought i had cancer although my mum did pass away from breast cancer when she was 32 years old.

I am 39 years old 

Blood Test PSA 25, Gleason 9 

After all of the tests and scans the PSMA scan showed that it had spread to lymph nodes in pelvic region. 

All this has happened and been found out in the last 4 weeks and just come as a massive shock. The obvious hope after discovery was that it had not spread and to have surgical removal of my prostate followed by radiotherapy. The PSMA scan it seems has ruled that out.

I am now on androgen deprivation therapy, bicalutamide 150mg once daily, i have my first Zoladex injection this coming monday, due to start chemo docetaxel in 6 weeks time followed by radiotherapy. They have said if the chemo is very successful then surgical removal may still be possible although I find this hard to believe. 

I suppose the question I am asking has anyone else of a similar age to myself and been in this position and wether the suggested treatment was successful.

Like anyone here being diagnosed it has just come as such a huge shock and I was not prepared for it. I have a 7 year old daughter and family and just want to be around for as long as possible for them as im sure is the same for everyone with this disease. 

I am up for the fight with the cancer and will take what ever treatment they suggest no matter how bad it makes me feel. My main aim is to be around as long as possible and for my daughter not to have to go though losing a parent at such a young age as i did. Having being the youngest man they have diagnosed in their clinic its hard to get my head around what I am truly up against?

Many Thanks to you all in advance for any advise you can give  

 

 

 

User
Posted 15 Oct 2020 at 15:34
Hi AJames ,sorry you find yourself here .you will find a lot of advice and info on this site .

I can offer you a positive story regarding my husband Gary ,even though older than you at diagnosis (55) his stats were the same .

PSA 23 Gleason 9 with spread to pelvic lymph nodes . We are now 5 years on having been through early chemo ,which Gary seemed to cope with extremely well ,working all the way through. Gary has been on a trial that maybe worth asking about .

His PSA has remained at 0.01 undetectable for 4 1/2 years .He’s still working full time in a manual job .

Hopefully others will come along and share their stories.

Download or order the toolkit that this site offers .

Best wishes

Debby

User
Posted 15 Oct 2020 at 14:20

Hi Everyone

I am trying to get over the shock of just being diagnosed with Prostate cancer that was found by accident during some investigations into low testosterone which had been linked to depression and sleeping difficulties. They carried out extensive blood tests and it just was pure luck that PSA was part of these tests. When i say luck it really was luck as the endocrinologist requested these tests before considering me for testosterone replacement therapy which would have fed the cancer massively.

I have so many questions and having not seen my oncologist face to face yet am finding it hard to accept and look forward. I never thought i had cancer although my mum did pass away from breast cancer when she was 32 years old.

I am 39 years old 

Blood Test PSA 25, Gleason 9 

After all of the tests and scans the PSMA scan showed that it had spread to lymph nodes in pelvic region. 

All this has happened and been found out in the last 4 weeks and just come as a massive shock. The obvious hope after discovery was that it had not spread and to have surgical removal of my prostate followed by radiotherapy. The PSMA scan it seems has ruled that out.

I am now on androgen deprivation therapy, bicalutamide 150mg once daily, i have my first Zoladex injection this coming monday, due to start chemo docetaxel in 6 weeks time followed by radiotherapy. They have said if the chemo is very successful then surgical removal may still be possible although I find this hard to believe. 

I suppose the question I am asking has anyone else of a similar age to myself and been in this position and wether the suggested treatment was successful.

Like anyone here being diagnosed it has just come as such a huge shock and I was not prepared for it. I have a 7 year old daughter and family and just want to be around for as long as possible for them as im sure is the same for everyone with this disease. 

I am up for the fight with the cancer and will take what ever treatment they suggest no matter how bad it makes me feel. My main aim is to be around as long as possible and for my daughter not to have to go though losing a parent at such a young age as i did. Having being the youngest man they have diagnosed in their clinic its hard to get my head around what I am truly up against?

Many Thanks to you all in advance for any advise you can give  

 

 

 

User
Posted 31 Oct 2020 at 11:40

My treatment pathway was different to yours.  At age 46, I had surgery then RT and HT.  I’m no expert on RT as the primary treatment but my doctors worked wonders on me.  I was diagnosed T3a and G7.  Upgraded after surgery to pT3b and G9.  A year after surgery cancer was found in pelvic lymph nodes.  Hence the salvage treatments.

My PSA is now <0.006.  So, don’t lose hope.  Very difficult cases can be brought under control 

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User
Posted 15 Oct 2020 at 15:30

Hello James,

So sorry you have been dealt such a poor hand. You might not quite be the youngest member we have had but certainly one of the youngest and sadly your cancer is not at an early stage. Nevertheless, you are now starting treatment and this and possibly further treatment will slow the advance. I note you were previously considering testosterone treatment but if it is possible and you might want further children, I would get your sperm frozen very quickly before starting HT.

Others here are in a similar position albeit rather older and post about their experience. Although, due to your staging you are past some options listed, I think it would help if you downloaded or obtained a hard copy of the 'Toolkit' available from the publications dept of this charity. It provides are lot of information about PCa and its treatment. https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit?_ga=2.206109653.795867346.1564408880-1013787081.1564408880

 

I do hope hope you respond well to treatment and do not suffer too badly from the effects it can cause.

There are people on this forum who will try to answer your questions but it helps if you put as much detail about your diagnosis as you can under you Profile/Bio as a place of reference for people to read and make more meaningful replies.

Edited by member 15 Oct 2020 at 15:31  | Reason: to highlight link

Barry
User
Posted 15 Oct 2020 at 15:34
Hi AJames ,sorry you find yourself here .you will find a lot of advice and info on this site .

I can offer you a positive story regarding my husband Gary ,even though older than you at diagnosis (55) his stats were the same .

PSA 23 Gleason 9 with spread to pelvic lymph nodes . We are now 5 years on having been through early chemo ,which Gary seemed to cope with extremely well ,working all the way through. Gary has been on a trial that maybe worth asking about .

His PSA has remained at 0.01 undetectable for 4 1/2 years .He’s still working full time in a manual job .

Hopefully others will come along and share their stories.

Download or order the toolkit that this site offers .

Best wishes

Debby

User
Posted 16 Oct 2020 at 12:47

Hi AJames, sorry you have been diagnosed with prostate cancer and it has spread to lymph nodes at such a young age. Like Gary I was diagnosed with PC at 55 so I can’t answer your questions directly. It seems like your hospital team have started you along the best path to control your cancer. I hope it all goes to plan and you are here for a very long time to come especially for your daughter. 
Best wishes,

 

Ido4

User
Posted 16 Oct 2020 at 15:45

Thank you all for your kind replies. I know that everyones journey is different so its hard for anyone to say how I will fare with treatment. Thats good news about gary Debbie hopefully I will respond the same and hope he stays well. I think its just hit me the last couple of days and knocked the wind out of me. Its a lot uncertainty that is making me feel this way. Am hoping it will pass once the shock wears off. 

User
Posted 16 Oct 2020 at 16:42

Can’t say very much to comfort you, but your hormone therapy drugs will certainly arrest the spread of the cancer, and then there is the option of the ‘wonder drugs’ Enzalutamide and Abiraterone, together with radio-therapy and ultimately chemotherapy, so I guess you’ll be around for a good while yet!

I would think surgery is pointless in your case, as I have three friends who got the disease the same time as me, and all have had to have what’s called adjuvant radiotherapy, post-surgery, because the cancer returned, so you might as well go for that in the first instance, and bugger the robotic scalpel!

Is there any history of PCa in the family, and do you have any male siblings? If so they should also get checked ASAP.

Best of luck.

Cheers, John.

Edited by member 16 Oct 2020 at 16:43  | Reason: Not specified

User
Posted 16 Oct 2020 at 18:07

With a mum who was diagnosed with breast cancer so young, and now advanced PCa in your 30s, it isn't just male relatives who need to be vigilant. I hope that someone is talking to you about whether to have genetic counselling and possible genetic testing? Breast cancer, prostate cancer, endometrial cancer and other hormone dependent cancers are closely related and if you are found to be carrying one of the BRCA genes, for example, treatment plan may be tweaked a bit. As has probably already been explained to you, genetic fault cancers can be rather more aggressive, and generally speaking, the younger men are at diagnosis, the poorer the outcome. We have only had a few men in their 30s on this forum, some of whom are no longer with us and a friend of ours' son died of PCa recently at the age of 27. So don't accept platitudes of "you die with it not of it" or "if you are going to get cancer, it's the best one to get" .... this is less true the younger you are so chuck everything at it.

Edited by member 16 Oct 2020 at 18:08  | Reason: Not specified

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

User
Posted 30 Oct 2020 at 11:23

Hi there,

 

Sorry to hear about your recent news. I can well imagine your shock. Although My husband was older than you when he was diagnosed 6 years ago, in 2014 at 47, we also have a daughter who was 4 at the time of diagnosis. He is also G9 with spread to one lymph node, seminal vesicles and bladder neck.

He had surgery, radiotherapy and hormone treatment. His PSA dropped to undetectable and for the last two years he has been off hormones with no rise. We have been told there has been a marginal rise in PSA now, but retesting in 6 weeks to see. 

The point is, there is do much that can be done to try to cure, hold off, slow down for many years, even at your age and g level. 

Keep up your hope and take each day as it comes. Ask as many questions as you need.

All the best

'Sorrow looks back, worry looks around, but faith looks up'
User
Posted 31 Oct 2020 at 11:40

My treatment pathway was different to yours.  At age 46, I had surgery then RT and HT.  I’m no expert on RT as the primary treatment but my doctors worked wonders on me.  I was diagnosed T3a and G7.  Upgraded after surgery to pT3b and G9.  A year after surgery cancer was found in pelvic lymph nodes.  Hence the salvage treatments.

My PSA is now <0.006.  So, don’t lose hope.  Very difficult cases can be brought under control 

User
Posted 29 Apr 2021 at 21:02
Hi everyone,

I find myself here after just getting diagnosed today. Your thread hit home with me as I am 41 with a young family also. My last psa was 16.8 and after ct scan and mri I had my biopsy and have a G9. I will be going for a PET scan next week and then a consult about my way forward, surgery route seems to be my Dr's preferred direction. Reading the comments on here has helped lift my spirits a bit so thank you all. I hope you are doing well now James.

User
Posted 29 Apr 2021 at 22:23
I am so sorry that you have been diagnosed so young and I must admit it has sent chills through me. My husband died last year at 73 after having almost 10 years after his cancer was discovered. His father died at 86 and was only ill a matter of months with pc and led a good active life .

I have a son of 40 and I am terrified he will have it one day. I feel that men are being diagnosed far earlier now and the sad thing is that my son watched his Dad all the way through all his different treatments and until the last few months, he did really well and many people didn't even know he had cancer.

I really fear for the future for my son and pray that he will be ok for many years yet. I am not sure he could handle it as well as his Dad did. I find it all very worrying but wish you well. My husband had hormone therapy followed by radiotherapy. We had several years when things weren't too bad and he did well on other treatments until April last year but he only had 6 sessions of chemotherapy out of 10 as it was stopped due to Covid and I will never know if this hastened his deterioration or not.

User
Posted 30 Apr 2021 at 15:53

Let me say how sorry I am for your loss and thank you so much for sharing your story. 

User
Posted 30 Apr 2021 at 18:07

James -  BUGGER !!!!!!

I am in the same boat as you just a little bit older at a young 55.   I am on one hormone tablet a day and an injection every three months.   The PSA has gone up, down and up and I guess sit may come down again..... who knows.

The key thing is to be positive and talk about it.   Talk to the wife, family, friends US HERE ....   It does help and although it will not take anything away it will help you.   There is tons of advice here...... and here it is more factual than what you may hear from friends.... I have lost count of the "my friends neighbours friends brother....".

When you meet or talk to the doctor then don't be frightened to ask the questions you want answered.   Be curious and if you are not sure ask again..... The GP and specialists are all there to support you and when the lingo gets all tech just stop them and ask them to speak "street" so you can understand :-)

I won't lie you are on a rollercoaster, you will get highs and lows and much of how you will cope is down to you.   Keep positive and you'll be fine and when unsure ... talk.

Be safe and be well

Nick 

 

User
Posted 14 Aug 2021 at 13:01

Just to say hi to all of the people and thanks the kind advice and replies given on here. I have now finished my treatment. 

My original diagnosis:

Prostate carcinoma clinically T3

PSA 25.2 repeat 23.2

MRI (September 2020) T3bN1

TP biopsies (20th September 2020) right 4/14 cores 4+3 4-mm, left 12/12 cores 4+5 40-mm, total number of cores 16/26

Bone scan (15th September 2020) and CT (15th September 2020) left adrenal adenoma felt to be benign bone lesion left SIJ, but ?lymph node, left pelvis

PSMA scan 26th September 2020 activity in prostate and nodes up to level of L2. Non-specific changes in axilla and left SCF

Hormonal treatment starting 30.09.2020 and to continue

Upfront Taxotere chemotherapy six courses December 2020 through to April 2021

Episode of AF March 2021

PSA 0.62 10th April 2021

Testosterone 4.7 (04.09.2020)

PMSA Scan 23.04.2021 response in pelvic and abdominal lymph nodes. Concern that left SIJ lesion was bone met. Still non-specific with regards to left axillary and left SCF nodes although slightly less obvious now

Since my diagnosis i have completed 6 sessions of chemotherapy which before the last session had brought my PSA down to 0.63. That was in April and have not had a PSA taken again yet.

I had 25 external beam radiations to prostate and lymph nodes and suspected bone met. I then underwent HDR brachytherapy which all finished just over 4 weeks ago. I am still on ADT and have been told I will be for probably at least the next 2 years. I now have to wait until the end of September to get my PSA level checked.

I am grateful for all the treatment I have had even though at times its been very hard on me and my family. There have been some dark times but my family have stayed strong for me and am proud of my partner and young daughter for their strength and support. My oncologist has always said his aim was to cure me but i am very aware what the word cure means and that nothing can be promised. I have been so focused on fighting and treatment i did not prepare myself for how i would feel once it was done. Although I'm hopeful and trying to stay positive the cloud of fear has not left me. I suppose this is the same for anyone thats had to deal with this frightening disease. Deep down i am frightened that the cancer may not all be gone and will have to deal with this all again after the huge toll its already taken. Have asked my oncologist what my outlook now is and what might happen in the future. I know its a stupid question deep down and as he said he cant answer it and there is no point having conversations about things that may or may not happen until they do. If anyone has been in a similar situation what were the long term results of the same treatment? Have been told to put it to the back of my mind and try and get on with my life. If anyone can give some advice on how the best way to do that is I would really appreciate it?. Im not ashamed to say being diagnosed and then all the treatment has been a frightening ordeal like it is for anyone. I just really want to be the best I can be for my family and not live under this cloud of fear that I have been. My best wishes and prayers to everyone and their family's that has to deal with and fight this disease. 

 

 
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