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Advanced Local PC so young

User
Posted 24 Aug 2016 at 20:00
I am 40 years old and has been diagnosed with PC on 27th June 2016 after having symptoms for almost 2 months.
Biopsy showed 80% of prostate had cancer, Gleason Score was 9.
So had Prostatectomy on 28th July 2016. Removed prostate, lymph nodes and seminal vesicles.
Biopsy of extracted prostate shows positive margins, lymph nodes negative and seminal vesicles positive.
The plan now is to do Radiotherapy.
I am a bit scared of the success of that treatment.
Also there is no plan to do Hormone Therapy yet.
Anyone has, or had cancer so young please?
If so, how are you doing?
Thank you
Sebastien
User
Posted 04 Sep 2016 at 20:04

Hello Radar


my husband was diagnosed with t3b just over 10 and half years ago (still going strong) his had escaped to the seminals and was told he would not be able to have his prostate removed as even if he did he would still have to go the radiotherapy hormone therapy route the sams as you have. he has been on and off ht since he was first diagnosed, when his psa drops to the almost undetectable he is taken of ht and then when it starts rising to much he is put back on it, so far this seems to be the way to go.


regards barbara.

User
Posted 25 Aug 2016 at 13:42

We have to be careful with PCa not to over generalize but to bear in mind that although men may share similar stats, with the many different types of PCa and other factors that differentiate one man from another, treatment options offered should be tailored to the individual in so far as this is possible. Furthermore, there are sometimes different approaches favoured by different consultants and changes in the timing and order that drugs are given in the light of experience gained through trials. An example of the former is that at one time 3 months was fairly typical for a man to be given HT prior to RT, whereas trials have shown that better results are achieved if the RT is preceded by 6 months of HT and some consultants opt for an even longer period.

Some urologists consider that although surgery is not going to halt cancer that has already spread and that other treatment will be necessary, it is still worth removing the prostate, so called 'de-bulking' of the mother-ship. Cancer still has the potential to grow or regrow in a radiated prostate and with Sebastian so young, this may have been part of a long term consideration in his case.

Barry
User
Posted 04 Sep 2016 at 20:10

hi radar, meant to say he was t3b gleason 9.


barbara

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User
Posted 24 Aug 2016 at 20:16

Hi Sebastien, are you black African / African Carribean by any chance?

We do have 3 or 4 members around your age plus a guy that has been diagnosed in his late 30s. It is very shocking to be diagnosed young, particularly if you are sitting in a hospital clinic surrounded by men in their 70s. My husband was 50 at diagnosis and we got sick of being told "you are very young - this is usually an old man's disease" so I guess you will certainly hear that a lot.

Hopefully some of the other 'young' members will come along soon and tell you about their experiences.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Aug 2016 at 20:39
Hi Lyn, Thanks for your reply.

I am French, white caucasian.
Yes I have heard this a lot.
GP also said it couldn't be a PC cancer, it must be an enlarged prostate or urine infection, even my step dad who had PC at 56.
So I just need to wait for those members to reply, or can I contact them directly?

Thanks
Sebastien
User
Posted 24 Aug 2016 at 23:56

There is a specific area on the website for young men - some of these threads might be interesting for you


http://community.prostatecanceruk.org/posts/t11741-What-treatment#post146137  

http://community.prostatecanceruk.org/posts/t11436-Hello-from-us#post141380 

http://community.prostatecanceruk.org/posts/t11444-Why-we-need-this-group#post141527 


http://community.prostatecanceruk.org/posts/t9506-Diagnosed-2006-at-age-38#post9506 


There are also a couple of members no longer with us but who were similar ages. It does seem that sometimes the younger men have much more aggressive versions of the disease.

http://community.prostatecanceruk.org/default.aspx?g=profile&u=2539  
http://community.prostatecanceruk.org/default.aspx?g=profile&u=3884  

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Aug 2016 at 07:53

hi.i am surprised they can operate ,i have locally advanced t3b no mo,gleason 7 3-4,i with seminal vessicle invasion,i had to go down the ht/rt route, any guys similiar.

User
Posted 25 Aug 2016 at 09:16
Thank you Lyn. I have posted private messages.
User
Posted 25 Aug 2016 at 09:26
Hi Radar,

Due to Gleason 4+5 and Biopsy showing 8/10 with cancer, RT wasn't an option for me.
RP is better for agressive cancer.

My dad and friend did RP as well whereas they had Gleason 4+3 like you.

Also, you cannot do RP once you had RT.
But you can do RP and then RT.

So you have completed the RT and it's all treated now?

Take Care
Sebastien
User
Posted 25 Aug 2016 at 12:55

Sorry MS95 I don't do private messaging so I won't see your message. I have to say though that you are wrong to state that RP is better for aggressive cancer - the research indicates the other way round I am afraid. It may have been that in your situation with your particular disease and your particular age, RP was considered best for you but that does not mean it will be the same for others.

Radar, the fact that MS's pathology found positive margins and SV involvement suggests that there was rather more disease than they were perhaps expecting - hence the decision to give adjuvant RT. Don't doubt yourself :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 25 Aug 2016 at 12:56

Lyn,


I think he means that he has sent others pms?


KRO..

Edited by member 25 Aug 2016 at 12:57  | Reason: Not specified

User
Posted 25 Aug 2016 at 13:42

We have to be careful with PCa not to over generalize but to bear in mind that although men may share similar stats, with the many different types of PCa and other factors that differentiate one man from another, treatment options offered should be tailored to the individual in so far as this is possible. Furthermore, there are sometimes different approaches favoured by different consultants and changes in the timing and order that drugs are given in the light of experience gained through trials. An example of the former is that at one time 3 months was fairly typical for a man to be given HT prior to RT, whereas trials have shown that better results are achieved if the RT is preceded by 6 months of HT and some consultants opt for an even longer period.

Some urologists consider that although surgery is not going to halt cancer that has already spread and that other treatment will be necessary, it is still worth removing the prostate, so called 'de-bulking' of the mother-ship. Cancer still has the potential to grow or regrow in a radiated prostate and with Sebastian so young, this may have been part of a long term consideration in his case.

Barry
User
Posted 25 Aug 2016 at 13:53
Lyn,
I meant private messaged the young members you gave me.
Does that mean RP has less side effects and being only 40, they agreed that would be the best option?
Don't know why my two friends and dad decided to have RP then. All three aged between 56-60.
Correct, they suspected microscopic cancer cells, but nothing was showing on MRI and Bone Scan.
Only the biopsy of the extracted prostate, seminal vesicles and lymph nodes showed the positive margins.
Now my oncologist has recommended RT only and not associated with HT. Is that normal please?
Would you recommend a second opinion?
Thank you
Sebastien
User
Posted 25 Aug 2016 at 14:03
Thanks Barry for those information. It's so complicated...
User
Posted 25 Aug 2016 at 22:45

Hi Sebastien,

Your consultant may well have a good reason for not adding HT, at least at this point but it is certainly a question that you could ask.

Yes, PCa is indeed very complex and sometimes medical opinions differ on diagnosis and treatment. Biopsy can miss tumours completely or not find the most mutated cells. Better scans are becoming available but even these sometimes fail to enable tumours to be identified yet alone microscopic cancer cells. My own case illustrates this. Following RT (in Germany), my consultant at The Royal Marsden considered that my slow but persistently rising PCa was likely due to some re-established cancer in my Prostate and an MRI scan showed this to be the case. I was referred to the University College London Hospital who did a further biopsy and scans and I was accepted in a study to have HIFU. UCLH also said they believed I had a cancerous iliac lymph node as it showed an uptake of choline on an MRI scan. They suggested I start HT. However, I referred the scans back to The Royal Marsden who said they were not convinced this node was cancerous and recommended I did NOT start the HT. I also sent the scans to myRT treating hospital in Germany and they were of the same opinion as the Marsden but stated that although there was some evidence of choline uptake, the size and shape of the node had not changed since the last check up scans I had there in 2011. However, they did suggest that if the PSA rose to 0.70 (in my case), I have a 68 Gallium PSMA scan and if appropriate have a minimum of 3 month's HT followed by some more radiation. My PSA is now 0.73, (having been at a nadir of 0.39 after HIFU) but further recent scans lead UCLH to believe that there may still be a very small tumour in the prostate. So the node and now the prostate are areas of suspicion.

This shows that it is not always possible to get a definitive opinion even from experts because of differing interpretations and limitations of scans in particular. I do believe it is worth pursuing possibilities with ones consultants and I have indicated my willingness to have a further targeted biopsy of the prostate and more HIFU to eradicate any cancer found. I have also asked if a biopsy of the suspicious node could be done at the same time and my consultant says he will take advice on this.

Barry
User
Posted 26 Aug 2016 at 06:41

Hi Sebastian your treatment will be determined by your medics so it's difficult to say what's normal. There are ongoing trials to see what the best approaches are for high risk men and also other categories.

I had RT after my prostectomy and did not have any hormone treatment. My PSA is currently undetectable 3 years later. I was 54 at the time of my treatment.

Bri

User
Posted 26 Aug 2016 at 07:51
Thank you Barry. We had planned to go to the Institute Montsouris (top hosp for PCa in France) for a second opinion, but I do trust the Oncol. here in Reading and going to do what she says :)

Sebastien
User
Posted 26 Aug 2016 at 08:00
Thank you Bri, your post and profile has given me so much more hope.
I hope it stays that way for you.
Best wishes,
Sebastien
User
Posted 26 Aug 2016 at 13:00

Hi Sebastien


I see its only 1 mth since a major op.  Both physically and psychologically that's a lot for anyone of any age to take on board.   You should have a main / key contact to discuss anything ie   MDT..    multi-disciplinary team (MDT).  Use as much resource as you can, ask as much as you feel able.   If you are comfortable posting or updating your profile with PSA values / dates etc it can help others a great deal. I'm 20 years older than you however - please see my profile. No symptoms.    Also ask about any trials ? (each region operate differently) 


You spoke about your step -dad.   Does biological father had/have any PC problem or do you have sons or brothers.  ?   As siblings are proved to have an increased risk.   


A bit of a paradox.   I get passed down genes.   However without my father having PCa I would not have had PSA tests and RP 18 mths ago.   


Some info :  


http://www.icr.ac.uk/our-research/research-divisions/division-of-genetics-and-epidemiology/oncogenetics/research-projects/ukgpcs


 


All very best.   

User
Posted 26 Aug 2016 at 17:01

Hi Sebastien I also had RT after RP and have had no ht at all. all the best Andy

User
Posted 26 Aug 2016 at 17:23
Hi Rob,

Thank you for your support. We will contact them or the Specialist Nurses.
Also we just had a baby boy, born on 10th August. So I have now an even better reason to fight this cancer.
I don't know my biological dad as he left us when I was 5 and I don't have any brothers.
I will update my profile shortly.

Thanks again

Sebastien
User
Posted 26 Aug 2016 at 18:08
Thanks Andy.
 
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