How to stop feeling devastated?

Stephanie,
Treatment in France was brilliant, and you get all your results before the doctor as it is your responsibility to take them to him, [I still have a CD of my scans], (I actually feel that if we had have had treatment here at that time, then neither of us would still be here! )
NO, the problem there was the language barrier and trying to find out what should happen next as I found I was being told what to have done rather than making my decision, like in UK you make your decision as to what treatment you have with the medics guidance.

Good for you to have some questions lined up, and yes you are, in a way, giving support to others purely by posting on here and letting us all know how you are getting on, it could help newbys.

When is your next appointment?

God Bless you and Graham.

PS. I like the Labrador avatar.  

Edited by member 07 Apr 2015 at 23:12  | Reason: Not specified

Hi Steph

We initially saw a Urologist and like Lyn's experience - he wanted us to go down the RP route.

We then met the Onco who was so different in terms of bedside manner and explained to us that we did have options, and gave us a lot more detail and a lot more of his time.

I must admit that we were in such a 'state' of devastation that we could not take it all in and did not know what to do.

We were also not privy to this site.

In a haze, we went for the RP but it failed (during the op) as they noticed the lymph nodes were involved so we reverted to the RT.

My advice would be to take your time, read a lot, get advice from here and do not rush into a decision like we did. We had an awful time as we were panicking to get the treatment underway. We thought my OH would die if we did not. We had no where near the support we needed but I think that you will be much better placed to handle this than we were, from utilising this site alone, and your own work experience.

Depending upon the route you take you will have a Consultant Urologist or Consultant Oncologist looking after your OH, just make sure that you have trust in them, they are recommended and they take time with you.If they do not - find someone else.

Thinking of you,

Alison

Hi Steph,
I was referred initially by my GP to an urologist who arranged for all the  tests / biopsies that resulted in my PCa diagnosis ..

He did explain that my PCa was 'treatable' and I had a choice of treatments.... This either was RP or RT with HT, or possibly a combination of both...

Brachy was not recommended as an option for me because of the size and volume of my tumours(s) I was told...

I did go away and consider my options, but it was pretty evident after discussing things with my OH and another follow up consultation with the urologist that I just wanted my prostate removed so no need  for me to see an Onco
He said that if my details were  presented 'blind' to MDT teams around the country, in my case, most would agree that a RP would be the best option for me...

I was made aware that there was a chance that some PCa cells may have escaped from the prostate microscopically and I may need follow up RT, but until the Lab ' had the specimen in their hand'  no one would know for sure... This was a chance I was prepared to take together with the possible side effects of surgery to get rid of the offending gland.

Everyone has to make their own decisions based on their diagnosis and clinical staging at the time. As I understand things RT is just as successful as a RP in treating localised PCa
I learnt a lot from this site prior to my decision to go ahead with surgery and went ahead knowing that there would be risks involved no matter what route I took.

Good advice given by previous posters as always....

Easy for me to say now I know but, take your time and weigh up all of your options...... my consultant even offered to delay my op for a few months to allow me to go away in the caravan.... Needless to say I declined that offer and I told him the sooner it's out the better!
 A decision I have not  regretted.

Best Wishes
Luther

Edited by member 09 Apr 2015 at 19:48  | Reason: Not specified

Wow. Am feeling a bit that people still want to answer me. This really is a place where real people are, isn’t it?

Firstly, thanks for the explanation, Lyn. I did actually reply, but it never got printed, it seems. Now I understand the different disciplines, it makes a bit more sense of who makes up the teams. And your John sounds a bit like Gray – wants to wander through the treatment, but Gray just wants to get it over with; a bit like what Alison says. Meanwhile, if the tension doesn’t give me a six-pack and cure the constipation life will be even more cruel! I guess I’ll be like you – the carrier of the info and the worry! Well, not really the worry – he’s very drawn and tired; not sleeping at all well, a bit disinterested in life, a bit withdrawn. He’s worried, of course. But it’s brilliant to read of the stories of triumphs, like John’s and all the other conquerors on here – and there are so many, so I’m squirreling those away if I need to shore him up.

Paul – I’m really sorry to hear how unsettled you feel at losing the urologist you trusted. I really hope you find the new one is even better than the previous one. I guess I’d not even thought of trust. I’ll be trying to get a ‘feel’ for this guy when we meet him. I didn’t even consider that we might have time to make a decision. I’ve been reading it but it hadn’t clicked until now.

Alison - how come they noticed the lymph nodes during the op? Did they not see them on the MRI scan? And I hear you and the others saying take your time – I’m not sure I could convince Gray, but we will be talking it through. It’s odd, from wanting to know about what we’re facing, I feel very sluggish now, as though I can’t be bothered to read it all. I think it’s a bit of delayed shock and the aftermath of the devastation – sounds like you went thought the same thing: panic, panic. I’ve slumped a bit. But I get we need to trust the consultant. If we wanted to see someone else for another opinion on treatment, might that not put us back to waiting lists and delay the treatment, do you think?

Luther - thanks for your reply. Gray is like you at the moment – if it is possible to opt for it to be removed, then let’s go for it. I’ve led him to look at the treatment options and side effects, and told him of some of the stories of the folks on here, but he is of the mind at the moment to cut the b***** out and be gone with it. I’m praying that is inside the capsule and if that were the case, Gray could make that choice. But can anyone tell me, how do you know if a surgeon has a good track record?

And Bri – how come you were given the opportunity to see all those ologists? Did you ask to, or are we just allowed on the NHS?  And how come you knew what to ask?  How do you get to research a surgeon? What made you plump for yours? What if I ask and they don’t give me an honest answer? Or if I piss them off? And that’s if I have the courage to ask! And what if they have only done a few – what if we then want someone else? And am I allowed on the NHS … and how would we find one and choose them?

Aaaargh!

Sorry. Meltdown averted, normal cycle resumed, cup of tea, have a wee … thanks guys.

God bless. xx

Life for those of us diagnosed with PCa is never the same again moving on. How long is the "moving on" I wonder. And so do many, no doubt, the problem for most with that, is that nobody knows?

The diagnosis stage, as I understand it, is a journey, a journey where at some point one encounters the critical fulcrum point, the pivotal point at which if the right decision is not made, all is lost, potentially.

So, with PCa, a supposedly generally accepted "slo gro- cancer" what's to worry about on diagnosis? How many of us have been told how lucky we are to have ONLY "Prostate Cancer"?

Steph,

there needs to be a realisation of what you are facing. My thoughts on your Gray's position would be, if it were me, FFS get it dealt with asap and get him on the road to "cured" asap. The suggestion that you (He) should entertaining housing PCa, waiting and watching and wondering, is an interesting thought to entertain. At some point, and no one knows where or when, the tipping point at which a curable diagnosis becomes a "live a long as you can and medication allows" kick in, and of you have left it that long it is too late for a longer life.

He may be climbing the PCa hill and the peak (tipping point) maybe, or may no be, closer than he or you know?

If that optimum point has passed, this will be of little consequence, but if you have the luxury of time on your side, you may save the day?

IIWM I would not fanny about making choices and decisions. I would get them made and treatment started.

atb

dave

Lyn - how do I look for the questions in the posts when there are thousands of posts? Is there a section I've not spotted? And, oh, how we would love to be able to go on holiday. We have not been on holiday for over 10 years - and that was to Wales, never mind somewhere warm!

And Dave - thanks for answering: I'm more with you on the 'what's the tipping point' question, assuming the capsule's intact. We were told it looks like it may have reached the outer margin ... Gray is like you in the FFS get it dealt with asap, and I'm sure he won't be of the mind to adopt any wait and see - he wants it out and then deal with the aftermath, grateful that there will be one. There'll be no fannying here! If the capsule is intact, we go for it. Just remains to decide which way to jump, if we have the luxury of that decision.

Stephanie,
At the top of the page is a white oblong which says "Enter Search Item Here" try that.

Urologist is first "ologist"      Radiologist deals with Radio therapy / ex-rays      Oncologist deals with Cancer Treatment.

Than you could go to Radiologist or Oncologist next. Urologist deals with anything to do with Urine, then you go to whoever your 'TEAM' decide as to next treatment.

God Bless,
Chris.

Edited by member 10 Apr 2015 at 11:35  | Reason: Not specified

Dear Steph

You are in that minefield of information at the moment and just do not know what to do (we have all been there!). Once you make a decision it does make things a little easier. I agree with the 'no faffing about' route, once you are comfortable with the chosen route.

Alison - how come they noticed the lymph nodes during the op? Did they not see them on the MRI scan? And I hear you and the others saying take your time – I’m not sure I could convince Gray, but we will be talking it through. It’s odd, from wanting to know about what we’re facing, I feel very sluggish now, as though I can’t be bothered to read it all. I think it’s a bit of delayed shock and the aftermath of the devastation – sounds like you went thought the same thing: panic, panic. I’ve slumped a bit. But I get we need to trust the consultant. If we wanted to see someone else for another opinion on treatment, might that not put us back to waiting lists and delay the treatment, do you think?

They noticed 3 Lymph nodes were enlarged on the scans but were unsure if it was related to the cancer and said it was 50/50. The only way to tell was to get them out at the beginning of the op, then depending upon the results proceed with the prostate removal or not (as was the case!)...it was devastating as they kept us in hospital and did not tell us what had happened for 24 hours (lots of whispering outside the hospital door lead me to breaking point!!).

If you are not happy with the Consultant (and you may well be) then there may be someone else in the same team that you could see? Or you could go private to speak to someone at a local Bupa Hospital or in London. I am afraid to say that it depends upon your finances and available time/transport. You could ask your GP for a recommendation. I agree that you do not want to delay treatment unnecessarily. You really do need all of the facts before you go forward ie all the scans and tests done.

Apologies that this is rushed - got a toddler begging for breakfast!

Alison x

Pleased that the results were good - best to edit your post though to remove the names of the consultants (one of the very few rules on here) before the moderators come along and do it for you :-)