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34yo diagnosed today

User
Posted 02 Nov 2021 at 19:53

Hi all,

I'd previously posted regarding my symptoms worries and today was the day for biopsy results... 

Bad news for me is that it's indeed cancer, the 4 biopsies all had cancer in it from various lobes of the prostate and its been scored a 4+5 on gleason chart. I have a bone scan Thursday and a CT scan Friday to determine whether or not my cancer has spread outside of the prostate but they think its at T3 stage at least. 

As I'm very young to be diagnosed with the disease, has anyone had any experience or have any information of younger men in similar situation? It's currently a case of wait for these scan results and then discuss the treatment options. 

K

User
Posted 25 Nov 2021 at 17:20

I was T3a and gleason 7 on diagnosis.  After my surgery, they upgraded to T3b and gleason 9.

A year later I needed 18 months of hormone therapy and 33 cycles of radiotherapy.  Just before this course of treatment, a PSMA scan picked up some cancer in two lymph nodes.

My psa is now <0.006, the lowest that can be measured.

So don't lose hope.  Everything to play for.

User
Posted 02 Nov 2021 at 23:34
sorry to see this. It is extremely rare but not completely unknown - we have had a very few men join here who were diagnosed in their 30s and I know of a young man who died recently of prostate cancer at the age of 27. Two things for you to be aware of:

- the treatment will make you infertile so if you are hoping to have children (or more children), do ask for a referral for sperm banking before treatment begins

- not an absolute certainty but prostate cancer tends to be more aggressive and more persistent in very young men so it is likely that your medical team will advise going in hard with the treatment plan.

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

User
Posted 03 Nov 2021 at 15:44
The PCUK nurses are fantastic if you do have any medical questions. Freefone number at the top of the page.

Best wishes,

Chris

User
Posted 03 Nov 2021 at 17:21

I wish you all the very best and am sorry this has happened to you at such a young age. The important thing is to stay positive, eat all the foods that keep you healthy and above all, keep enjoying things you like doing and once treatment has been decided, ask as many questions as you like and discuss all options available to you. I don't know if treatments vary for younger men but Lyn can advise you.

User
Posted 03 Nov 2021 at 22:33

Sending you our best wishes.

User
Posted 03 Nov 2021 at 22:43

Thinking of you and hoping for the best with your scans. 

User
Posted 04 Nov 2021 at 00:55

So sorry you have this diagnosis Kieran at such a young age. It’s good that you’re keeping your spirits up….so important to stay positive and ready for whatever comes your way. Please keep us updated and very best of luck with everything 👍🏽

User
Posted 04 Nov 2021 at 05:00

My heart goes out to you.  I was 46 when diagnosed which was considered young.  I certainly felt robbed.  Was also T3 and G9.

User
Posted 10 Nov 2021 at 17:32

I am going to say two weeks. In fact my trust sent me the appointments for all the scans and the post scan appointment at the same time so I knew exactly where I stood.

Now we have COVID things may take longer.

Dave

User
Posted 18 Nov 2021 at 22:29

Hello Kieron, I was diagnosed in March 2021 aged 38.

My story so far.....

I am a 38 year old ex Royal Marine, I have a lovely supporting wife and 2 loving children ages 15 (boy) and (girl 9)

I had been struggling with back pain since October 2020 after I bent down to pick up after my dog my lower back spasmed. I went bowling 28th December 2020 and my back spasmed again, later that night I woke in the early hours in pain and sneezed, I felt something in my lower back and the pain was excruciating with pins and needles going down my legs and electric shocks along my lower back. I did not go to hospital due to covid overwhelming the hospitals at the time. I managed to crawl into bed a few hours later. I talked to my GP the next day over the phone who prescribed naproxen. I went to see a chiropractor in Jan 2021 who diagnosed me with a bulged disc at L4/L5 i received treatment for 2 and half months. My back flared up again so my GP ordered an MRI scan. I went for the MRI on 18th Mar 2021, after I came home I was called back to hospital within an hour of leaving. They found a collapsed and fractured L1 vertebrae which was compressing on my nerves and very close to my spinal cord, I lay flat and was not allowed to move. They also found a tumour in the L1 vertebrae and said this will be the secondary tumour. I had an operation to relive the nerve compression, rebuild the L1 using titanium rods and screws, fill with bone cement and take a biopsy.. I then had a prostate biopsy as my psa was 35. Both results came back, I have stage 4 metastatic prostate cancer Gleason 9. A small tumour has now been found on my pelvis. I was started on Biculatamide hormone tablets with an injection halfway through and now every 6 months. I had 10 sessions of radio therapy on my L1 vertebrae before starting on Enzulatimide, my PSA has been >0.2 since Aug 2021. I do have the normal side effects everyone reports but am managing. I am also having Zoledronic acid bone strengthening drug every 4 weeks which has brought some bad bone pain. I have had 2 sessions of RT to my chest to reduce the pain caused by the breast tissue brought on by the HT and i have also had 4 weeks of RT to the prostate.. I am now just on enzulatimide, 6 monthly hormone injections and zoledronic acid infusions once a month. My next appointment with consultant is in December so see what happens next. I wish you the best of luck and am here if you would like to talk.

Edited by member 18 Nov 2021 at 22:49  | Reason: Not specified

"38 year old diagnosed in March 2021 with stage 4 metastatic PC. My story so far is on my profile"

User
Posted 18 Nov 2021 at 23:09

You really have been through it aswell Paul. Really hope your PSA stays low and you continue to respond well to treatment. 
Best wishes 

Elaine 

User
Posted 25 Nov 2021 at 15:42

Hi all,

Just an update on next steps.

I'm going for a PSMA scan on Dec 1st, my case team felt this was beneficial in order to get a clearer picture all over the body. I'm told this scan is more sensitive and can pick up more microscopic cancer cells should they have spread. The hope is that this scan shows no worsening of spread that my initial MRI/CT/Bone scans showed ahead of starting curative treatment. If it shows up any further spread then it'll be new discussions re: treatment - fingers crossed!

I'll update results of the scan when I get them early December I hope. 

K

User
Posted 07 Feb 2022 at 10:42

Hi Kieran,

Good to hear from you. Glad things are happening and that your PSA has dropped so much.

Cant help you with regards RT I’m afraid, but really wish you all the very best for when it comes around. 

Take care

Elaine

User
Posted 07 Feb 2022 at 11:01
RT is an easy and straight forward process but the side effects get more pronounced over te weeks. I had 6 gyes over 6 weeks and felt unwell at the end and looked even worse. 3 months on all is good
User
Posted 07 Feb 2022 at 20:16
Hi K - see my Bio for RT experience/tips etc etc (any specific q's plse ask). Obviously it will affect each person differently but I got through it all pretty well (bar the odd mishap which were mainly self induced!). Still on HT and expect that to continue till at least circa October (12 months post RT completion); all seems to be going to plan to date.

Cheers,

Nick

User
Posted 08 Feb 2022 at 23:28

Hi Kieron

See my bio. My OH was on Abiraterone for a year from Nov 2020. It was excellent. First 3 months took a bit of adjusting to with hot flushes etc but the side effects were minimal and he maintained very good levels of activity. Wish he was still on it. A far kinder treatment than chemotherapy. Wishing you the very best on it. 

Regards

Sharon

 

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User
Posted 02 Nov 2021 at 23:25

hi,

Have you a Macmillan or specialist nurse you can call to discuss results.  Perhaps your doctor will let you know quickly but this is an anxious time for most people.

Keep us in touch with what happens.  After the results they should give your treatment plans or options.

All the best

Peter

 

User
Posted 02 Nov 2021 at 23:34
sorry to see this. It is extremely rare but not completely unknown - we have had a very few men join here who were diagnosed in their 30s and I know of a young man who died recently of prostate cancer at the age of 27. Two things for you to be aware of:

- the treatment will make you infertile so if you are hoping to have children (or more children), do ask for a referral for sperm banking before treatment begins

- not an absolute certainty but prostate cancer tends to be more aggressive and more persistent in very young men so it is likely that your medical team will advise going in hard with the treatment plan.

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

User
Posted 03 Nov 2021 at 11:23

Hi Peter,

Yes I have an assigned specialist nurse now I can chat to and after my scans I've to meet with the specialist team to discuss the treatment options. Until those scans its pretty much a waiting game... im in good spirits though and ready for whatever treatment suits me best. 

K

User
Posted 03 Nov 2021 at 15:44
The PCUK nurses are fantastic if you do have any medical questions. Freefone number at the top of the page.

Best wishes,

Chris

User
Posted 03 Nov 2021 at 17:21

I wish you all the very best and am sorry this has happened to you at such a young age. The important thing is to stay positive, eat all the foods that keep you healthy and above all, keep enjoying things you like doing and once treatment has been decided, ask as many questions as you like and discuss all options available to you. I don't know if treatments vary for younger men but Lyn can advise you.

User
Posted 03 Nov 2021 at 22:33

Sending you our best wishes.

User
Posted 03 Nov 2021 at 22:43

Thinking of you and hoping for the best with your scans. 

User
Posted 04 Nov 2021 at 00:55

So sorry you have this diagnosis Kieran at such a young age. It’s good that you’re keeping your spirits up….so important to stay positive and ready for whatever comes your way. Please keep us updated and very best of luck with everything 👍🏽

User
Posted 04 Nov 2021 at 05:00

My heart goes out to you.  I was 46 when diagnosed which was considered young.  I certainly felt robbed.  Was also T3 and G9.

User
Posted 04 Nov 2021 at 11:32

Best of wishes

User
Posted 10 Nov 2021 at 17:05

Hi all, quick update,

Since my diagnosis last Tuesday as detailed above, I've had a bone scan, CT scan and MRI scan all within a week which I'm really grateful for in terms of timescale. Now is just the waiting game for the results of these which will determine the treatment plan.

Does anyone know based on experience how long these scan results might take?

K

User
Posted 10 Nov 2021 at 17:32

I am going to say two weeks. In fact my trust sent me the appointments for all the scans and the post scan appointment at the same time so I knew exactly where I stood.

Now we have COVID things may take longer.

Dave

User
Posted 18 Nov 2021 at 22:22

Hi all, quick update,

Had my scan results today...

Bone scan - looks ok but there's an area on left side of my skull that looks suspect, said unlikely to be cancer related and maybe old trauma but getting scan to confirm.

CT scan - chest and organs look fine 

MRI scan - confirmed I'm stage T3b in seminal vesicles and local lymph nodes. 

Also said that there was some inflammation in my mesorectal lymph nodes but not enough to be suspect or to upgrade my cancer to T4. Truth is they aren't sure but are giving it the benefit of the doubt and testing me as T3b. Has anyone had any experience of PC spreading to those specific lymph nodes? Also, is there anything else that could cause this inflammation? Biopsies, hemorrhoids?

Due to stage, size and spread of tumor, potential treatment 1) quickly start hormone therapy then an aggressive course of radiotherapy. 2) Surgery discussed due to my age although the surgeon stated that it would be very unlikely to cure all the cells even if surgery went well and I'd then require the RT anyway.

Any inputs and advice welcomed.

K

 

User
Posted 18 Nov 2021 at 22:29

Hello Kieron, I was diagnosed in March 2021 aged 38.

My story so far.....

I am a 38 year old ex Royal Marine, I have a lovely supporting wife and 2 loving children ages 15 (boy) and (girl 9)

I had been struggling with back pain since October 2020 after I bent down to pick up after my dog my lower back spasmed. I went bowling 28th December 2020 and my back spasmed again, later that night I woke in the early hours in pain and sneezed, I felt something in my lower back and the pain was excruciating with pins and needles going down my legs and electric shocks along my lower back. I did not go to hospital due to covid overwhelming the hospitals at the time. I managed to crawl into bed a few hours later. I talked to my GP the next day over the phone who prescribed naproxen. I went to see a chiropractor in Jan 2021 who diagnosed me with a bulged disc at L4/L5 i received treatment for 2 and half months. My back flared up again so my GP ordered an MRI scan. I went for the MRI on 18th Mar 2021, after I came home I was called back to hospital within an hour of leaving. They found a collapsed and fractured L1 vertebrae which was compressing on my nerves and very close to my spinal cord, I lay flat and was not allowed to move. They also found a tumour in the L1 vertebrae and said this will be the secondary tumour. I had an operation to relive the nerve compression, rebuild the L1 using titanium rods and screws, fill with bone cement and take a biopsy.. I then had a prostate biopsy as my psa was 35. Both results came back, I have stage 4 metastatic prostate cancer Gleason 9. A small tumour has now been found on my pelvis. I was started on Biculatamide hormone tablets with an injection halfway through and now every 6 months. I had 10 sessions of radio therapy on my L1 vertebrae before starting on Enzulatimide, my PSA has been >0.2 since Aug 2021. I do have the normal side effects everyone reports but am managing. I am also having Zoledronic acid bone strengthening drug every 4 weeks which has brought some bad bone pain. I have had 2 sessions of RT to my chest to reduce the pain caused by the breast tissue brought on by the HT and i have also had 4 weeks of RT to the prostate.. I am now just on enzulatimide, 6 monthly hormone injections and zoledronic acid infusions once a month. My next appointment with consultant is in December so see what happens next. I wish you the best of luck and am here if you would like to talk.

Edited by member 18 Nov 2021 at 22:49  | Reason: Not specified

"38 year old diagnosed in March 2021 with stage 4 metastatic PC. My story so far is on my profile"

User
Posted 18 Nov 2021 at 22:47

Hi Paul,

Just reading your bio and you've had a tough time of it pal! I hope your next appointment with the consultant goes ok in December and your symptoms stay under control. 

I think I'll be starting HT in the next week or two but I'm unsure what type it'll be... dreading the side effects already but it is what it is and needs must! I have another appointment next week at the urology clinic to outline plans.

Take care

K

User
Posted 18 Nov 2021 at 22:55

Thank you and I hope your appointment goes well mate, side effects were not nice for a few weeks but my body has adjusted and these winter nights help with the hot sweats. I find swimming has really helped with the fatigue as well as I have been advised not to run anymore dues to bone mets and density issues. It's been tough on my family but got to roll with the punches haven't we. 

Edited by member 18 Nov 2021 at 22:55  | Reason: Not specified

"38 year old diagnosed in March 2021 with stage 4 metastatic PC. My story so far is on my profile"

User
Posted 18 Nov 2021 at 22:55

Hi Kieran,

My husbands MRI scan showed something suspicious on his pelvis. After bone scan we were told it was mets, we got a second opinion and they didn’t agree. He then had a PSMA pet scan which confirmed it wasn’t mets. Are they sending you for a PSMA pet scan??

My husband has got spread to one local node maybe two….so I’m not sure about the node that you mention sorry.

He will be having RARP later this year knowing he will be extremely likely to need ART too. He is much older than you at 73 (although a young and fit 73)

Wishing you the best of luck with everything and hope all works out really well for you.

Elaine

User
Posted 18 Nov 2021 at 23:09

You really have been through it aswell Paul. Really hope your PSA stays low and you continue to respond well to treatment. 
Best wishes 

Elaine 

User
Posted 25 Nov 2021 at 15:42

Hi all,

Just an update on next steps.

I'm going for a PSMA scan on Dec 1st, my case team felt this was beneficial in order to get a clearer picture all over the body. I'm told this scan is more sensitive and can pick up more microscopic cancer cells should they have spread. The hope is that this scan shows no worsening of spread that my initial MRI/CT/Bone scans showed ahead of starting curative treatment. If it shows up any further spread then it'll be new discussions re: treatment - fingers crossed!

I'll update results of the scan when I get them early December I hope. 

K

User
Posted 25 Nov 2021 at 17:20

I was T3a and gleason 7 on diagnosis.  After my surgery, they upgraded to T3b and gleason 9.

A year later I needed 18 months of hormone therapy and 33 cycles of radiotherapy.  Just before this course of treatment, a PSMA scan picked up some cancer in two lymph nodes.

My psa is now <0.006, the lowest that can be measured.

So don't lose hope.  Everything to play for.

User
Posted 08 Dec 2021 at 22:26

Hi Kieran, how did you get on?

User
Posted 10 Dec 2021 at 16:15

Originally Posted by: Online Community Member

Hi Kieran, how did you get on?

 

I am still awaiting the PSMA scan results. I have a meeting with my nurse specialist Thursday 16th Dec for these. In the meantime I have started on HT which has been bicalutamide 50mg for 21 days and had my first Leuprorelide acetate (Prostap) injection on Weds 8th Dec. Still a bit up in the air with other treatment options whilst I wait on the PSMA scan outcome.

All the best

User
Posted 30 Dec 2021 at 16:54

Hope your scan results went okay Kieran. It sounds like you’re following a very similar path to my dad, he’s just had his PSMA Pet CT and is in very similar position to you (identified abnormality on bone scan). Fingers crossed for you

User
Posted 02 Jan 2022 at 00:32

God bless and good luck Kieran: that's a tough draw. With any luck they'll want to cut it out as well as radiate. Your youth would help meet the functional challenges all that treatment would create. Fingers crossed for you. There are some very ill men on here who seem to go on forever: I certainly draw strength from them and hopefully you can too. Good luck.

User
Posted 03 Jan 2022 at 19:33

Hi all,

Hope you all had a great Christmas and New Year. My PSMA scan showed spread to the mesorectal lymph nodes which unfortunately means surgery isn't an option due to their troublesome location. The next step for me is meeting with the Radiotherapy specialist on Feb 4th to discuss the options going down that path alongside systemic treatment in tablet form. The good news is no spread to bones or organs. 

I have my 2nd Prostap HT injection Jan 6th and have been having the flushings associated with them but so far nothing else although early days!

Still in good spirits and aware that 2022 will bring challenges but ready for them. 

Cheers

K

User
Posted 07 Feb 2022 at 10:22

Hi all, hope everyone is doing ok. 

Thought I'd update my progress as it's been a while. I've now been on Prostap since Dec 8th and it has seen my PSA level drop down to 2.4 (23.7 on diagnosis). I have been generally ok on it other than pretty bad night sweats which have  made sleeping very much up and down... not sure I can do much about that though. For anyone else struggling I bought some gel pads that you can refrigerate and pop them under the pillowcase, they are good and only 12-15 quid off Amazon. 

I had meeting with oncologist 4th Feb and as of this week I will be starting Abiraterone Acetate (Zytiga) with a view to beginning radiotherapy in a few months time. RT will be in the form of 8 weeks or 4 weeks at a stronger level, no decision has been made on this yet.

Anyone who has gone through RT, how did you find the whole process and any tips and how to prepare for/deal with the side effects I may experience. Same goes for the Zytiga... any experience/help much welcomed. 

All the best

K

User
Posted 07 Feb 2022 at 10:42

Hi Kieran,

Good to hear from you. Glad things are happening and that your PSA has dropped so much.

Cant help you with regards RT I’m afraid, but really wish you all the very best for when it comes around. 

Take care

Elaine

User
Posted 07 Feb 2022 at 11:01
RT is an easy and straight forward process but the side effects get more pronounced over te weeks. I had 6 gyes over 6 weeks and felt unwell at the end and looked even worse. 3 months on all is good
User
Posted 07 Feb 2022 at 20:16
Hi K - see my Bio for RT experience/tips etc etc (any specific q's plse ask). Obviously it will affect each person differently but I got through it all pretty well (bar the odd mishap which were mainly self induced!). Still on HT and expect that to continue till at least circa October (12 months post RT completion); all seems to be going to plan to date.

Cheers,

Nick

User
Posted 07 Feb 2022 at 21:27

I had 10 RT sessions which were straight forward enough but did get pain in the nether regions due to a catheter. Once that was taken out it was fine and I didn't show any side effects.

Ztyga got stopped as I had a tumour growing hence the RT. I was on this medication for a while. The biggest complication was dexamethsone which replaced prednisone. I was on this for too long causing my adrenal glands stopping cortisol, so be very wary of steroids, they do the job but on long period of time I put on loads of weight. When I stopped this medication the oedema nurse informed me I has lost 3 inches off my swollen feet! I still get hydro cortisone but my clothes fit me again.

Replacing zytiga due to the tumour, I got put on olaparib which for over a year has controlled my cancer well with an average PSA of 0.02. Prior to the tumour the zytiga worked for several months but I hear of many on this medication for the long term.

Hope this answers some questions and I wish you all the best with your treatment

User
Posted 08 Feb 2022 at 23:28

Hi Kieron

See my bio. My OH was on Abiraterone for a year from Nov 2020. It was excellent. First 3 months took a bit of adjusting to with hot flushes etc but the side effects were minimal and he maintained very good levels of activity. Wish he was still on it. A far kinder treatment than chemotherapy. Wishing you the very best on it. 

Regards

Sharon

 

 
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