Results inconclusive

User

Posted 01 Jul 2016 at 00:27

Hi everyone
I posted a couple of weeks back to say my oh had been diagnosed PCs
He has a G score of 10 and has had a bone scan and anti. We went for the results today and was told the MRI showed that the cancer had broken through the prostate a little (I didn't ask how far or what parts if any it had spread to) the doctor then went on to say that there was something on the bone scan that looks suspicious but they are undecided and want to get other opinions and look at the scans further.
Oh is to start hormone tablets on Monday for 4 weeks and then on the 19 July will have first hormone injection and then injection every 3 months. The doctor said if the cancer has spread to the bone they will continue with the hormone treatment but if it has not they will also give RT.
My OH and others are pleased with this outcome but, though I have not said anything, I am really upset and scared about the prognosis because this is the highest a sore and I guess therefor really aggressive even though people keep saying PCs are slow growing. I also keep reading that hormone treatment can controls the cancer "often for several years" well several years doesn't sound like a good outcome, that's about 3 isn't it. I am sorry if this seem all do
And gloom but everyone seems to think this is a good outcome but I can't help but think it's just telling me we have a few years left if we are lucky. I am not letting my feelings show to oh though as he is being so positive which I know is really really important.
What is it really like to be on hormone treatment. I know about the sexlife thing and don't really care about that part of it but how is he going to feel, he is a strong well built man, is this treatment going to change him. He is a very physical man , they have told us about fatigue - how bad is this.?
Sorry to ask so many questions and I know I have gone on a bit but I am feeling a bit desperate and lonely right now.

User

Posted 01 Jul 2016 at 16:21

Hello John

Thanks so much for your reply it is so helpful to hear the 'real deal' from people like yourself on this site who have been through the same things, I can see how people feel this site is such a support and help to them.

I am sorry my last post came accross as so negative, there must be lots of people on this site who are in a worse position, I think I just needed to let my emotions out as I didnt want to bring my OH spirits down.

Thank you for the good wishes.

Yvonne.

User

Posted 01 Jul 2016 at 16:28

Thank you Heenan73

The name of the hormone on the box is Decapeptyl SR 11.25 mg - is this one a 'sledghammer' as well?

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User

Posted 01 Jul 2016 at 10:32

Dear Mountain Stream

You are in a difficult place now, the distressing time after being diagnosed but not really knowing how for the cancer has spread, and the inconclusive scan has extended matters.

It is good news that your OH has started on HT treatment irrespective of the above as the hormones will start to shrink the cancer immediately, and would have been done whatever the true outcome of the scans.

It seems like you now need to know how far it has spread and this is such a worry. If it has not spread to bones he will have RT, and if it has spread he will remain on HT. As you say "several years" is a vague and worrying term, which varies from one man to another. I understand that some men can be on HT for 10 years and others less time. Some men even take it intermittently if it is suitable for them.

It sounds so daunting at the beginning, but it will be okay and your OH will cope.

The side effects of HT can vary as well. Some men have very few effects, others lose some strength and muscle tone, acquire a bigger belly, lose some body hair to legs and chest or grow small man boobs. I think most men suffer some tiredness and I have heard several times that an afternoon nap can help.

Looking at diet/exercise too can help men to retain some energy and there is lots of advice on prostate healthy diets. Whether they work or not is another question but many of us are making a few changes - worth a try!

Has Chemotherapy been mentioned? Should the cancer have spread to the bones, many NHS trusts are treating men early on with this as it has a proven effect in their long term treatment outcome.

We all understand how difficult this time is for you, but once you know what you are dealing with and you can forge ahead with treatment things will settle down in your own mind.

It is certainly a wake up call to enjoy life and do those things that you have always planned but never got round to.

I hope that your next scan review is not too far away, time wise, so that you can get the answers that you need.

Best wishes

Alison

Edited by member 01 Jul 2016 at 10:36 | Reason: Not specified

User

Posted 01 Jul 2016 at 10:44

Hi,

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

User

Posted 01 Jul 2016 at 12:08

Dear Mountain Stream,
I'm sorry the news wasn't better but at least you both know where you stand now and eventually you will be able to adjust to the new "normal".

The term "a few years" I think is deliberately vague as men seem to vary so much in how they respond to treatment.

Those members who have already answered you have experience of just what it's like. Take what you can from their replies.

If your other half is feeling positive then that is a very good thing.. That feeling might change for him as he gets further into treatment, especially if he starts to suffer fatigue etc.

That's when he will need you most, to be there and support him (Which I'm absolutely sure you would anyway)
He will need reassurance then that, to you, he is still the man you married.

Please try not to worry too much about time. Whatever that time may be, make it the best ever. Worrying about how long you might still have together will dilute the pleasure of that time and spoil it for you both.

You will know from reading the posts on here that treatment options are coming through all the time. Estimates of "a few years" now may mean something completely different in a few years time.

Look up and embrace your new life, rather than down where there is nothing bu bleakness.

You'll do it - you have to, but I also hope that whenever you need us you'll let us know

All the best

Sandra

****(

We can't control the winds - but we can adjust our sails

User

Posted 01 Jul 2016 at 15:16

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.

User

Posted 01 Jul 2016 at 16:21

Hello John

Thank you for the good wishes.

Yvonne.

User

Posted 01 Jul 2016 at 16:28

Thank you Heenan73

The name of the hormone on the box is Decapeptyl SR 11.25 mg - is this one a 'sledghammer' as well?

User

Posted 01 Jul 2016 at 16:35

Sandra, thank you for the advice. I am determined to stay as positive as I can and as soon as I can start to plan some positive and enjoyable times for us both I will.

Thank you aqgain and everyone else that has responded.

Yvonne.

User

Posted 01 Jul 2016 at 19:27

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

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 01 Jul 2016 at 22:33

Mountain Stream
I thought it might be worth you knowing that my hubby is a G10 with spread to bone and lymph. He was diagnosed in Dec 2010 and is still going fine, he's having some bladder trouble but the cancer is still under control. I'm hoping that this will give you plenty of hope as this is what I needed when my OH was diagnosed.

Lots of love
Devonmaid

User

Posted 17 Aug 2016 at 21:44

Hi all
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.

User

Posted 18 Aug 2016 at 08:54

I read that giving up dairy can help fight PC

User

Posted 18 Aug 2016 at 09:58

Hi Mountain stream,
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

User

Posted 19 Aug 2016 at 00:04

Hi Leila
It sounds similar. We have called the specialist nurse just to ask if we should have it checked out, waiting for her to call back. I will let you know her response. Graham has only been on HT for a bout a month and is just starting with the hot flushes which we laugh about really cause we are now both in the same boat as far as these go anyway. He does get tired but then he has always been an early to bed chap who needs his eight hours. The last couple of days he has been complaining of itching and has what he thought were bites from being in the garden but we don't know if this could be a side effect of the treatment, I think I read somewhere that it could be. We are only just starting on this journey so I guess we have a lot more to go through. I do find this forum a real help though so thanks so much for taking the time to reply and I hope all goes well for David and you going forward.

User

Posted 07 Nov 2016 at 19:13

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

User

Posted 07 Nov 2016 at 20:47

Keith all the GPs will prescribe the 3 monthly dose under instruction from an oncologist. I don't think your issue is finding a GP - it is that you would need to be in the care of an oncologist to get the written instruction.

Why not contact the nurses at this charity (number at the top of the page) or Macmillan and ask them for advice?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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