45 years old with Gleason of 10 and Small Cell Neuroendocrine

Hi all,

Following a PSA test of 33 and subsequent CT and MRI scans, I have been diagnosed with advanced prostate cancer which has spread to my lymph nodes, spine and other local tissues. Devastated is an understatement on how me and my wife felt.

It has been a stressful couple of months since we were told the initial news in November. I had my biopsy a week before Christmas, which meant we wouldn't hear anything for a few weeks, so more stressing out and waiting.

I had my appointment with hospital on the 8th Jan so we could get the biopsy results and also get my first hormone jab (been on the tablets since November) and we weren't quite ready for what we were going to be told. 

Gleason Score of 10, mets in the spine, lymph nodes and pelvis and also small cell neuroendocrine components. 

To have this thrust on you out of nowhere is soul crushing, it felt like a bullet to the head when I am only 45. The feeling that my parents might have to bury me is numbing. The emotions have been raw and there have been a lot of tears.

It all happened so quickly over a period of months. I thought the aches and pains I was suffering were from work, I didn't expect this!

My wife and I are absolutely destroyed as we thought we had the rest of our lives together and didn't expect something like this to happen to me at this age. 

I am especially angry at myself for not spotting any sign of this sooner.

But that is changing. We are pulling our socks up (well as far as I can get them, since my left foot and leg keeps swelling up from oedema) and we are pushing forward. My wife is constantly chasing the hospital so we can get our appointment with Oncology so we can start kicking this things arse! 

It is going to be a journey as the neuroendocrine is going to mess up some of the treatment options and I know it isn't curable, but I plan to be around for a few more years. 

As I mentioned above, I have started hormone treatment with expected chemotherapy to come. Only being 45 is a bonus in this case as I should hopefully be able to handle some of the more aggressive treatments. I know there is no cure, but I just hope I still have plenty of time to spend with my wife, family and friends. 

Is there anyone else out there that has gone through this under 50? 

Z

Hi Zaxx, 

Where to begin. I’ve been a member on here for a couple of weeks and this is my first post. Like others I felt impelled to reply as our diagnosis and likely prognosis is so similar. I’ve read so many posts on here and heard such heartbreaking and heartwarming stories which have helped my wife and I hugely at the very start of this uninvited journey.

I’m 44. I know. Diagnosed a few weeks ago 4 days before Christmas. Gleason 9 (4+5), advanced metastatic- prostate, seminal vesicles base, 2 pelvis bones and local pelvis lymph nodes x2. The biopsy showed intraductal cancer type (rare) in one gland and acinar (moderately aggressive) in another gland. None in the front two glands.

I absolutely echo your feelings at the shock and disbelief of all of this. I had some peeing and ejaculate issues and did not expect the PSA of 31 nor the onward cancer pathwaying. I had an ultrasound, MRI with contrast, biopsy and PET PSMA with all the dread you describe in between. Somehow I managed to cook the family Christmas meal in the middle of that with everyone but my 6 and 7 year old boys and nephews and nieces knowing. I think numb describes how my wife and I felt.

So I’m two weeks into hormone tablets and had a Zoledex injection yesterday. I haven’t seen the Oncologist yet but the Prostate nurse told me she’s chasing this. Maybe 1-2 weeks away. I think they plan to frontload chemo and then radiotherapy. 

I think very much like bereavement there are stages with this journey. The initial tears, shock and outright disbelief has turned into pragmatism and wanting to get on with treatment and live life to the full. I don’t doubt there will be highs and lows ahead- starting chemo or rising PSA or need to change treatment strategies if/when resistance to treatment creeps in.

Personally keeping up my running and weights and keeping in at work have really helped. Distraction has been good. Deciding who to tell has been quite difficult at work and home and I’m still navigating that. Dealing with other peoples shock has become quite selfishly I feel difficult as well. 

Lots to navigate ahead for us both and all on this forum. I’m sure this site will be a great source of support going forwards. Bring on the Oncology appointment!! 

Zaxx & Darren - 

so sorry to hear about your situations.  If there's any good news I can offer, it's that your ages are a massive help in both tolerating treatments and in maintaining a good quality of life. 

Please don't beat yourselves up about not noticing signs earlier.  As Fullscreen said, the perception that PC is an 'old man's disease' needs to be fixed.  I was diagnosed aged 54 and had no symptoms apart from an occasional urgency when needing to pee (which I put down to my age).  No aches / pains or other problems.

Whatever your next stages are, keep us posted, the support and knowledge here is excellent.

Craig

Later I would find out from the Urologist that a PSA of 31 is almost certainly diagnostic of cancer and that it probably would have been advanced when I developed LUTS and saw my GP initially anyway. I don’t hold any ill feeling toward my GP as their actions were well intentioned and came from the right place. Should the family history of prostate cancer changed their reasoning?

Much like changes to cervical screening, and this may be happening already, forgive my ignorance but changes to prostate cancer screening could be reviewed. Is anybody lobbying for this I wonder? My own thoughts would be genetic testing for all men in their 20’s with a family history of prostate cancer and if positive then regular PSA testing from 40 even if asymptomatic. Maybe another thread needed for this!

Ahh Zaxx, 

Not going to lie to you my man but thats as upsetting to read as they come. Im so so sorry. I was 46, and, like you, had my biopsy just before Xmas 21, the waiting over a time when everyone is relaxing and enjoying family time was horrendous. I was too frightened to absorb any potential devastating news, I genuinely was. My parents were terrified of having to do the very thing you mentioned. My other half was incredible throughout and it sounds like you and I both have that same great support.

Our stories are similar but obviously not the same.

I salute the bravery you have and stand shoulder to shoulder with you lad.

Kick its a*se mate. 

Jamie.

Darren, my heart goes out to you and your family. So much to deal with, it’s just so unfair to be diagnosed with this disease at your age. However you seem really strong and that’s so important when fighting this. All I can say is I, like everyone else on this forum,  wish you all the best with your treatment and please don’t be afraid to post more either about your journey or any questions. There are some incredibly knowledgable people on here and everyone is so supportive.

Good Luck,

Derek

I don't think we will see PCa screening in our lifetimes - it doesn't work. Hardly any experts support screening at the moment, and that includes BAUS, PCUK and the PC Research charity . The problem is that the PSA test is too unreliable, mpMRI needs to be followed up with a biopsy and the recent research on PSMA as an alternative identified too many false positives and false negatives. There is hope that a new blood test marker will eventually replace the PSA test and I guess that will be the time for BAUS to debate screening again. 

As for genetic testing, only about 5-10% of PCa is thought to be genetic; almost all PCa is caused by environmental factors - the food you ate as a child, which probably have been very similar to the food your dad ate, the amount of carcinogens in your water supply, which is probably the same water your dad drank, etc. In fact, the biggest risk factor for PCa is being male - a large scale piece of European research showed that about 50% of men in their 50s, 60% of men in their 60s and nearly 80% of men in their 80s have some cancer in their prostate although many will never be diagnosed and will die of something else. 

The best thing a 20 year old man can do is cut processed meat out of his diet. Men in families with the problem gene (BRCA1 & 2 being the most common) tend to know this as they will have female relatives who had breast cancer at a young age, male relatives with breast cancer at any age, female relatives with uterine or ovarian cancer, as well as male family members diagnosed with prostate cancer at a young age.