Hello husband diagnosed yesterday

Hello Peggles and welcome to the site.

Pleased an odd feeling on diagnosis? People who haven't gone through it might not understand but we do. When we were told we were very matter of fact about it having (well me that is) done the research so we were pretty sure what the diagnosis would be. The nurse however was very concerned and needed to check with us outside the consulting room that we had actually understood that John DID have cancer.

Once you get that bit over and done with the feeling of relief is palpable because at least now you are no longer in no man's land but can get on and be proactive (such as getting your husband to lose a bit of weight for instance)

As long as you can talk to each other once the treatment starts they'll be no misunderstandings about how either of you feel, both physically and mentally.

We're here if you want the answers to questions and we are also here when it all gets a bit too much.

Good luck. He's a lucky man to have you in his corner !!

Best Wishes

Sandra

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Since I was last in touch, I've made real progress as I prepare for my choice (radiotherapy) by working through my 3 months hormone therapy.

To start, I had pills for one month, then onto injections with an overlap of two weeks. As soon as I started the pills, I was wiped out from time to time with a withering fatigue. I felt too tired to go to sleep. I was concerned that this would get worse when I had even more hormones when the injections started. I don't know why, and I don't really care why, the fatigue immediately disappeared and I feel better than I have for a long time.

Had I made the right choice of having radiotherapy? It's amazing how our minds can confuse us when we are lying awake, thinking, at 3.00am. I remember being told by the consultant that whilst radiotherapy might well have advantages re. Side effects, the downside was that it made further treatment very difficult if it was required. I convinced myself that the scenario could well be that my PSA would again rise, but nothing could be done, and I'd just wait for the inevitable.

I understood if I needed more advice, I could phone one of the specialist nurses at the urology department. So I did just that, and she got me back on track, and my new scenario is that the radiotherapy has every chance of solving it, but even if it didn't It would probably be controlled by long term hormone therapy. In fact the same might be true for surgery, or watchful waiting.

So why am I wasting my life worrying about it? Don't know, so I'm not!. I'll be around for many years to annoy people.

The moral of this story? Our imaginations can be our worst enemy, realism is our best friend

That is one of the main reasons the forum was redesigned a couple of years ago to create different sections; newbies and people with low grade cancer don't need to look at the sections on advanced stages or end of life care if they don't want to. Before we had the new sections, people dealing with the serious end of the disease felt unable to post honestly in case they scared newer members.

Of course, there are people who get lucky - they tend to leave the forum as soon as they can because they have no ongoing need for support. The active membership is therefore always going to be skewed towards those who either have advanced disease or ongoing side effects from treatments etc. Some rejoin when their cancer comes back but not all I guess.

"That is one of the main reasons the forum was redesigned a couple of years ago to create different sections; newbies and people with low grade cancer don't need to look at the sections on advanced stages or end of life care if they don't want to. Before we had the new sections, people dealing with the serious end of the disease felt unable to post honestly in case they scared newer members. "

Sorry,. But this was on the section for newbies with localised cancer.

" My frustration is that men chase robotic surgery assuming it is best but it only takes a quick look at members here to see that the men with very poor outcomes tend to have had keyhole/ robotic RP"

I am sure that would be worrying to most men who have had or about to have a RARP.

Edited by member 12 Nov 2017 at 11:46  | Reason: Not specified

I would think there has been some improvement in robotic surgery techniques since the 8 years ago your husband was diagnosed.

I would also think it depends what research you study. Even the researchers results are often skewed in favour of their biased views.

After all the Open surgeons ( and they are becoming fewer as they retire) often have a vested interest in carrying on with Open RPs as they perhaps don't want to embark on the learning curve of robotics at their stage of their career as they are more comfortable doing what they have done for the last 20-30 years.Nothing wrong with that if they are excellent surgeons. I don't expect the young surgeons of the future to take this path though. They might find themselves frozen out of this type of Urology work.

I have witnessed this myself as Radical Prostatectomy has been taken away from my local hospital and centralised in an effort to improve outcomes for men.

I have read that they will be able to do one port surgery soon and they are nearer to incorporating a microscopic facility for the surgeon in with the 3D camera so that they can see and deal with any spread whilst they are in there so reducing

recurrence. Even the best surgeons open or not cannot see microscopic levels of spread so that would be a great thing. Of course if the cancer has spread further afield that would not help a bit.

They are also other companies looking to develop surgery robots to get in on the act as "Intuitive" the company who has the monopoly on the D'avinci is clearly exploiting their customers. Apparently there is a chip in the consumable instruments that only lets them be used 10 times ,( decided by the American FDA and Intuitive) before replacement even although they could actually be used about 30 times!

Other companies are looking to develop tactile feel for the surgeon and instruments that are snake like in that they go anywhere.

No doubt the cost will come down too once there is no monopoly. Whatever we think robotics is here to stay and be improved upon.

All in all I still think one size does not fit all and sometimes Open could be better. It's not black and white. Such a big part of the outcome/ recovery is down to the skill of the surgeon and not the type of surgery.

All surgeons are definitely not the same and we are reliant on them to do a good job to the best of their ability which ever method they use.

I think we have one of those and he is every bit as keen as us to get a good outcome.

Having come through the usual route. i.e Open then Keyhole and now robotic I don't think for one minute he would be doing this if his outcomes were worse.

I think he is a man of honesty and integrity so we are happy with that.

Everyone to their own opinion though.

Ann

Strange though that on the BAUS website between 2014 to 2016 there was about 2,500 Open procedures nationally and over 15,000 RARP. I realise that these figures are also out of date now so it will be interesting to see what the figures are for 2017 to 2019.

Only time will tell if my husband is one of the ones with a poor outcome or not.

Regards

Ann

Edited by member 13 Nov 2017 at 15:18  | Reason: Not specified

Glad to hear you are on the mend. That's great news you have had so far.What a coincidence though, we went to see the consultant this morning for Tony's histology results. Great news for us too. Clear margins, no extracapsular spread, No seminal vesicle involvement or perineural invasion and PSA undetectable. Final stage T2c with Gleason 3+4.

We know it's early days but are cautiously optimistic for the future.☺ We know how unpredictable this disease is. We live in hope there is no micro Mets anywhere.

On the down side Tony chose to have non nerve sparing to help the surgeon get clear margins so we know the result of that will definitely be ED. He also has quite bad incontinence at this time.( 8 weeks post op) but we are hopeful this will improve as it's still early days. He is doing his Kegel exercises religiously and the surgeon has given him the contact details of an excellent physiotherapist specialist in pelvic floor rehab so he will see her.

Despite this we are just glad for now the cancer seems to be gone which is the most important thing. I think we may have a bit of a celebration with some bubbly tonight as we feel a lot of the weight has been lifted from our shoulders.

Let us know how you get on.

Cheers for now

Ann