An unexpected diagnosis.

Thank you Tykey, it is scary but today we have both spent the day talking openly about it. Our children are now in the loop and the same with the rest of our family and we do have a large and good family.

Steve's biggest concern atm is a) has it gone to the bones and b) will hormone suppressants make him feminine. Also he's a self employed carpenter and he's obviously worried about his business.  

Thanks Lynne, I don't think I misheard but my auto spell checker just tried to correct seminal for spinal and I didn't proof read... sorry. 

Thank you Chris, things seem to be moving really fast but I think that's because Ipswich hospital has just done an upgrade clinic for PC and my husband Steve was one of its first patients. He's having a bone scan on Monday and the results will be out by the following day. Reading the forums it sounds like this can normally take weeks, not hours. 

You were young to be going through that sort of surgery. Thanks for the info about clicking on peoples pictures to read their profiles. I don't even know how to write a profile atm. I'm still navigating the site but I'll get there. 

Hi Maria

Welcome to the forum nobody really wants to join. You'll get loads of help and support on here, the Nurses are also top drawer if you need to call them privately. I'm 10 years older than your OH and was diagnosed in August this year, my cancer had metastasized into my hip and I've recently started chemo as a supplement to the Hormone treatment.

Once you get over the initial shock you will both get more focused. Good luck.

John

Edited by member 14 Oct 2018 at 03:44  | Reason: sic

No, he won't become feminine! I've never met anyone who grew breasts, although we always pull each others legs about the potential. He won't be borrowing a lacy bra from you 

What normally happens is that we put some weight on around the midriff and thighs, plus loads of hot flushes. Physical tiredness is probably the biggest worry for him

Thanks everyone. When I read these replies I feel this calm washing over me. 

Steve and me have talked none stop today about every possible outcome and every possible option and the compromise of those options.... Its been a positive day.

When I read things like "8 years on" it helps to wash away so many fears. Steve isn't reading this site yet but I keep saying, "okay listen to this" and read him a reply or some prudent information and he's starting to listen and become more interested. 

"Have they said that he will be having hormone therapy rather than surgery?" Hi Lynne, to be honest I'm foggy about what they said. The consultant talked about major surgery. The key nurse said he would be pushing Addenbrooks for surgery but that they may not agree. They both spoke briefly about RT and HT but we were bombarded with so much info that neither of us took it in. Steve is saying he wants the surgery. I on the other hand, after reading a lot of the forums here, think its something he shouldn't be rushing into. That said, the consultant stressed that he must decide quickly as time was not on his side. The nurse on the other hand appeared much calmer and hopeful. If hormone treatment starves the cancer, then perhaps he should be having that before surgery? 

We get the results of the bone scan on Tuesday. The following Monday his team will have a meeting and I'm sure the consultant or nurse said something about an online conference with him at the same time... I could be totally wrong about that. The following Thursday which is a week on Thursday, he's over at Addenbrooks for a full diagnosis and treatment plan; so we have 10 days to learn, learn, learn.

You are a bunch of fantastic giving people and I can't thank you all enough. I hope, like you, we can go on to support others in the future.

I shed a tear or two when I read your initial post just now, in contrast to when I went for my own ‘Big C’ pow-wow with the Multi-Disciplinary Team evaluating my diagnostic results earlier this year, as I had already twigged I had cancer, or PCa as we connoisseurs here call it. I joked with the consultant ‘I am surprised you don’t have a big box of Kleenex on your desk!’. They helpfully recorded our conversation on a CD for me to take away - which I have never listened to.

I was totally chilled, as I had already checked out the morbidity (fatality) rates of different cancers, and it seems, in the words of one of my GPs, “PCa is one of the best cancers you can get”. Obviously, he has never had cancer......Others here who have lost loved ones might disagree, but most men die with it, not of it.

I was G4+3=7 like your man, and had a prostatectomy in June and am now cured.

Calm down Dear, it’s by no way the end of the world, unlike many other cancers. I hope you can get Hubby to come and join us here himself.

Everyone here will endeavour to help you however we can.

Cheers, John.

Hi Bollinge, I think its good that your team recorded all the conversation. Is that usual ? Next time we see them we will be much more tuned in but I think it would be good to have a recording because from our first meeting with the consultant, Steve and me disagree about what was said!

As a cancer survivor, I wasn't nearly as scared at my diagnosis because like you, I knew before I was told so them telling me was just confirmation with a few added extras. 

I think it is standard practice in my local hospital and what a good idea, as some men go into shock when told the news, and so much of the rest of the conversation ends up going over their head!

Most smart phones have a recording function these days.

Cheers, John.

Correct again, Matron.

On my notes it says there were seven or eight members of the Multi Disciplinary Team, and at my “Dear John” consultation there were only three.

And of course it’s only polite to ask if it’s OK to record a conversation. I wonder why any consultant would object to that?

Cheers, John.

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

John

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. 

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

Bones are clear  

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

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?

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 
 

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. 

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

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.

Interesting study may help reassure that RP is the best choice for locally advanced cases:
http://prac.co/l/ya6j327c

Thank you Lyn, I've now got a whole bunch of questions to ask tomorrow. I hope he decides to go with HT and RT and not surgery but at the end of the day, its him that has to make the decision. All I can do is raise his awareness about the pros and cons. 

Mr Angry retrospective studies can only report retrospectively? Yes you can take advantage of new treatments but basically the current options for whole gland treatment for T3 are the same as they have always been radiate or remove, the study was looking at the outcomes for guys who made those choices. Contrary to what I expected RP showed clear advantages if your goal is longevity and freedom from HT.

Hopefully one day less barbaric treatment than surgery or ionising radiation will be available currently they are not.