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User
Posted 15 Oct 2018 at 11:34
Hi Barry

Wow just read your story on the profile page. I've just started on the Chemo/Prostap, gives us all hope, well done.

John

User
Posted 15 Oct 2018 at 14:34

I'm glad you complained Mr Angry. Getting a good consultant shouldn't be a lottery game. Having to be assertive shouldn't even come into this.

User
Posted 15 Oct 2018 at 14:43

Hi Peter, do you regret having surgery? Like you, I had skin cancer and so like you, my immediate thought was 'surgery is the way to go' but after coming on here and trawling this site, I'm going to be asking a lot of questions when we go to Addenbrooks. There's obviously compromises to be made with what ever treatment one decides to go with. Whilst I can't decide for him and will wholeheartedly support what ever decision he makes (if he has one), as his wife, I consider myself fully involved and so if he doesn't ask the right questions, I will. 

User
Posted 15 Oct 2018 at 15:27

Barry I did go and read your profile... every word!

I love the way you add humor into the trauma. Your profile made me laugh through the tears. You have really been through the works yet here you are, like so many on here, helping others. Thank you.

User
Posted 15 Oct 2018 at 18:41

Hi Maria,  I have no regrets at all of having surgery.  So far it's gone as the surgeon said it would although rather slower recovery than he said.  I also know my true pathology which upgraded my Gleason and know there were negative margins.  If I was younger I might worry more about my sex life, but then again...

I still believe that what the Dermatology Consultant told me applies in many prostate cases, 'that you can have the laser treatment but cutting it out is the gold standard'.   Well you don't know if there's something just outside the prostate that RT might have got, but then you don't know RT has got it all anyway and you won't know for up to a year when your psa settles after continued hormones.  With an op you know in 8 weeks your psa should be undetectable, and you can have RT later.

In my opinion it's best to know when you go for the appointment what you want and how to handle worse cases, no umming and ahing.  Make sure things move on and not you'll come back to let them know. 

Regards Peter

 

User
Posted 15 Oct 2018 at 20:22

Thank you Peter, that's very helpful.

User
Posted 16 Oct 2018 at 16:46

Bones are clear  

User
Posted 17 Oct 2018 at 09:11

Fantastic news. Now that’s out of the way you can concentrate on making the right decisions , for you both. to treat the cancer .

best of luck 

Phil 

User
Posted 20 Oct 2018 at 23:54
Hi Maria,

Great news about no mets in the bones. Iam sure it’s been a long month with a lot to take it.

How are you and OH talking? Has he been on the site to look at threads and comments? You mentioned he’s self employed and worried how it my affect him. I was dx 4 years ago at PSA 392, Gleason 9 etc. One thing I found was being able to chat about it with OH, sometimes in depth and other times just wee comments. Get used to chatting about it, you need to, it’s part of life now!

There’s a lot to take in and another thing to not get caught up in is how long I got left ie 8 years. It could be 5,10,15 or whatever, treatment has progressed so much even in the 4 years I’ve been dx.

Good luck

Steven

User
Posted 21 Oct 2018 at 15:36

Hi Steven, 

No he hasn't been on this site and is still refusing to entertain the idea which is a great shame. I do hope he will eventually start taking a sneaky peek. 

ATM he's going through, "I'm going to die" stage and he's very angry and because I'm the closest to him, understandably I've become a bit of a battering ram. Hopefully after his next consultation, which I believe to be this coming Thursday (but he's being evasive even about his appointments) he will feel more focussed. 

Sorry but I've not been on much the last few days. I'm just feeling mentally drained... that sounds selfish :( I know I need to be strong but right now I'm not sure how to be. 

User
Posted 21 Oct 2018 at 19:09

We now have a copy of the letter from the urology clinic to our doctor. It goes as so:

Diagnosis: Intermediate risk adenocarcinoma of prostate T1c disease Gleason 4+3; presenting PSA 19.33

MRI shows PI-RADS 5 - T3b NOMX

Lower urinary tract assessment -IPSS 24 quality of life 4;

Q-max 19.4 m/second in voided volume of 157 ml with PVR of 120ml

WHO 0 ASA 1 BMI 26 (weight 89 kilos, height 82cm)

We understand that adenocarcinoma is the type of cancer and we understand the PI-RADS and T3b NOMX but what is IPS 24 quality of life 4? and what is T1c?

 

User
Posted 21 Oct 2018 at 19:56
It just means that your MRI result indicates that it is more advanced than the biopsy suggested
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Oct 2018 at 20:03

Hi, 
I suspect the T1c was an initial diagnosis before the MRI scan... which then uprated to T3b N0 MX 
I'm obviously no expert... but with a PSA of 19.33 I'd be very surprised if it had remained at T1c .. 

I started out as a T1 ...but then progressed clinically to a T2b .... Finally after an RP my histology showed that I was in fact a  pT2c .. 
The Gleason score can also differ after analysis in the lab .. 

Best Wishes 
Luther 
 

User
Posted 21 Oct 2018 at 20:06
Hi Marie, good luck with the appointment. I found that recording it on the mobile phone helped and was good to listen afterwards. Once you no what OH is tackling and have a plan it place, I found it got easier. It’s never easy for you or OH but talking about it did help me. Also the normality of working and getting the on with things helped. I continued working through my chemo, just taking to odd day off when my body told me to, or when Christine did. Also don’t know what OH does for hobbies but keep the exercise up is very important, I found! Clears the head and soul!

Good luck for the appointment.

Steven

User
Posted 21 Oct 2018 at 20:42

Thanks for the responses and the links Mr Angry.

We both work full time Steven and we will both continue to work full time if we can. We are rock climbers haha. Rock climbing takes a lot of concentration and stamina so we may have to come down a few grades. We are also cyclists which may need to be modified to how S is feeling. As I've always struggled on behind him, dropping down a gear may frustrate S but it will be good for me. 

User
Posted 22 Oct 2018 at 01:27

Hi Maria,

I just read your profile in full and wondered how you got that skin cancer. Did you do a lot of nude sunbathing whilst doing handstands?😉

Seriously though, you don’t say how old Mr Maria is. (I just re-read your first post and I see he’s 53 - unlucky, but we do see guys here in their forties)

As for “who your friends are”, when I was diagnosed nearly a year ago, two of my closest friends in their seventies and eighties came out and said: “Oh, I’ve got it too....” - they both had kept it secret from everyone - and others would text me in sympathy and treat me with kid gloves when meeting them as if I had a death sentence.

Bearing in mind I had no symptoms before diagnosis and now post-op I have never felt so well, aged 62 and 3/4. So my prognosis is good, and my oncologist told me I am cured. Not sure I believe him though.....

I hope everything goes as well for you and Steve. I have a vision of you on an endless loop climbing like Gollum from “ Lord of the Rings”!

Best of luck, my precious.

Cheers, John.

Edited by member 22 Oct 2018 at 02:15  | Reason: Not specified

User
Posted 22 Oct 2018 at 09:52

Hi Maria

I'm a rock climber and self employed too!  I had the surgery, followed by hormone treatment and radiotherapy.  My climbing did suffer (obviously!), and the fatigue made work challenging, but almost just about manageable.  It was hard though.

Two years on, and I'm now back to fully fit, climbing hard again and working much longer hours.  And enjoying it!  It is a slow-ish recovery, but life really is not written off.  A few small changes for the side effects of all the treatment, and on we go.

Hope it goes well for the two of you.

cheers

Graham

User
Posted 22 Oct 2018 at 20:26

Thanks John, your post made me laugh. I'm glad you are doing well. 

User
Posted 22 Oct 2018 at 20:35

Hi Graham and wow, another adrenaline junky! Where do you climb? 

I think in some ways its tougher when you are self employed. Did your business suffer? S's business is still quite young and so still establishing itself. That said, he's got a good team of men who are more than capable of holding the fort for a while.

Glad to hear you are back on the rock (love the picture) and working harder than ever. You are all so inspiring.

 

 

User
Posted 22 Oct 2018 at 20:40

So Addenbrooke's had its meeting today and Steve got a phone call to say Addenbrooke's would happily carry out robotic surgery with RT follow-up. We are going to talk to them on Thursday and it would be great if any of you could give advice on the sort of questions we should be asking regarding surgery.

We also have an appointment the following Wednesday to talk about another option which is hormone treatment and RT. 

I don't know if anyone has seen that very good article in The Times today? Its about a breakthrough for prostate cancer. There's also this article in The Irish News https://www.irishnews.com/news/2018/08/08/news/breakthrough-trial-for-prostate-cancer-patients-leads-to-massive-reduction-in-radiotherapy-treatment-1401895/

 
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