Results inconclusive

It's a scary time for you but as you will see from other's posts it not necessarily all doom and gloom. It's easy to say be positive etc but probably at the moment you feel anything but this.

Your OH is lucky that he has been diagnosed and has treatment available to him. I recall how uncertain everything was for me when I was diagnosed, not understanding the scores , grades etc and what was likely to happen to me. My wife too found it an uncertain period but we got through it together and as a result are possibly closer than ever.

My Gleason is 5+4+3 with T3a staging. I was unable to have surgery but went down the HT/RT route. In fact I've just returned from my surgery having had another Zoladex injection this morning. I have just over another year to go on HT.

I had spread to the lymph nodes and seminal vesicle. I received 37 sessions of RT and found it quite tiring by the end. I was signed off work for 2 months towards the end of it. I was able to work mornings only for the first 7 weeks but my employers were keen for me to have time off to recover before I returned to work.

Fatigue affects people differently. For me there was a difference between RT fatigue and HT fatigue. The RT fatigue wore off about 6 weeks after I finished that part of the treatment. I still have HT fatigue on occasions but I've learnt to adapt to it. I found the first year following RT difficult as I expected to return to some of normality sooner than was achieved. But I'm more or less through that now and live my life almost as before diagnosis.

Hot and cold flushes can affect many but not all men. I know one who has never had any flushes at all. Becoming emotional and teary is quite common too ( I experience this quite often). I found that it was better to tell family, friends and work colleagues what I was likely to go through, so I knew what I'd told them was what I wanted them to know rather than speculate on what was happening to me. Everyone has been really supportive and yes, I had to cope with the inevitable Micky taking at work ,but it was all good humoured and I had people laughing with me rather than at me every time I was flushing.

I have suffered loss of libido too. Quite quickly. But my wife and I have taken the approach that it's better to have the opportunity of survival with HT , than no chance at all. There is support available for erectile problems via mechanical and chemical assistance. This should be explained to you by your medical team but I suggest if it's important to you that you seek the help of your GP too. Mine has been very supportive to me.

I hope that this helps you. You will find many posts on this site covering virtually all aspects of the treatments and emotions which we have all experienced. If in doubt then ask away and someone will help you.

I believe that is it sometimes far harder for the OHs to cope with this disease than it is for the patient himself. I know that my wife was worried about me and still is but we have come to terms with it now.

Good luck,

John

Thank you Alison.

I asked the doctor about chemotherapy and he said no it is not an option at this stage but may be something for further down the line. My OH is doing really well on the food side of things and both of us have stated to follow the plant programme, he happens to love vegetables and salads so that is a good thing, he is not having dairy at all or red meat.  Our son is convinced of the wonders of distilled waters and has brought us a distiller which we use all the time (not sure if anyone else has heard of this) and a neighbour brought in a huge bag of apricot (i think) kernals that he has to grind and eat building up to about 10 in the morning and 10 in the evening.

Our next appointment is on the 19th July with the nurse to administer the first hormone injection.  The Doctor has promissed the second opinion on the bone scan will be available for that meeting.

Everyone on here gives such wonderful support and kindness - it is so very much appreciated and I think I may be coming back a lot over the coming months / years.

Yvonne.

Mountainstream, the hormone treatments are all 'sledgehammers' for the men that find them successful. As said above, there are men on here that have survived for 10, 12 even 14 years by balancing hormones with breaks. Sadly there are also men for whom nothing really works for long.

What you might not be focusing on is that they are offering RT if there is no bone spread - so actually, your OH could be one of those who are given RT and HT and then get a full remission and move on with their lives. Try to keep the positive outcome in mind as well as the worst case scenario

A bit of an update on OH We went for the first hormone injection and to hear the outcome of the second opinion on the shadow on the pelvic bone. Well they are still undecided so we are to go for further bone scan in October if the shadow has gone that's bad news if it's still there it's good. The specialist nurse was great and explained very thoroughly what was going on. We understand now that the cancer has spread to the seminal ? The MRI showed that there was no spread to the lymph nodes but because it has spread no one can guarantee that the cancer won't pop up somewhere else. If the shadow is still there they will assume it is not the cancer and then he will have a course RT the nurse was very honest with us and told us not to put all our hopes on the RT being a cure.

Anyway OH is doing very well, staying positive and really getting involved in the change of lifestyle. We have brought some new gadgets ad drinking lots and lots of green juices.

Over the last few days though he has developed a constant dull ache deep in the bottom of his belly I suppose where the prostate might be. Have others experienced this ?

Also what's people's views about Pomi T and apricot kernels.

Long post again, hope this is ok.

David has also a constant dull ache in his stomach. He describes it as a not really a pain, more a consistent feeling, sometimes after exercise it becomes more noticeable. The fatigue is also Inconsistently ongoing some days he's fine, then another day he's knackered. He has been on hormone treatment over a year now, and the side effects according to him seem to be manageable but not easy or pleasant. He will be on HT for another two years.

These side effects, are they common... He also has ED and low libido.

We have a loving marriage, very close, and I'm sure this helps us both.

Leila

Edited by member 18 Aug 2016 at 16:03  | Reason: Not specified

Just to let you know. I had a similar regime to you ie Hormone tabs and 11.25mg injection of Diphereline (triptorelin) I believe they tend to use a different brand called Decapeptyl in the UK. My cancer had progressed outside the prostate so surgery was not an option. My diagnosis was C61HO T3bN1M0 Stage IV. Had the bone scans and RT for 7 weeks and a CT/MRI and PSA every 6 months

I was diagnosed in September 2010 and am still here so several years can mean a good life span.

However (and here comes the ask) I am obviously abroad, a retired British ex pat and over here I get as I said 11.25 every 3 months.

In Feb next year I have to be in the UK which is when I am due my jab. So far contacting a couple of GP practices they will (or can only offer) a 3mg injection ie monthly. Obviously you can see why I am a very unhappy person. Your GP seems to offer the 11.25mg and I wonder if it would be possible to do a temp reg with him. Up to you whether you can let me know where they are.

Yours,

Keith