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My husband has just been diagnosed with prostate cancer

User
Posted 11 Jul 2014 at 22:47
Has a PSA of 27 and Gleason score of 9, MRI and CT scan next, we are devastated and also very scared of what the prognosis may be after the scans.
User
Posted 12 Jul 2014 at 13:16

HI Carol and welcome to this forum albeit nobody really wants to be here it is a great place for information and moral support.

I would urge you to upload the toolkit from this site as it will give you a lot of very significant information about diagnosis, treatments and things like that.

Meantime it is hard for our Men, they find the initial news devastating, confusing,scary and it can play on their emotions. We wives and partners have all of that plus an initial feeling of overwhelming helplessness. Believe me that will all change as the diagnosis stage comes to an end and you can move into either curative or management treatment. It seems to take forever to get through all the tests and get that actual consultation that tells you what the options are. 

The results you have had so far are just numbers at this stage the results of the MRI scan, and if it is deemed necessary, the radioactive bone scan will give your medical team all the information they need to get to their diagnosis. It may seem hard but until you get that far there is little you can do other than urge them to give you the quickest appointments that they can. It will also help you both if you go to any consultations with your Husband, especially the diagnostic one. So much information comes out that it is really hard to take it all in. Many people take notes so that they can ask questions later if they forget. Anything you need to know ahead of any tests ask away on here. There are many men with similar initial results as your Husband but the one thing you will learn about this disease is that it is almost impossible to predict outcomes, medical science can give you a good idea but every individual reacts differently. Staying as positive as you can certainly helps and being there every step of the way to support your Man is beneficial to you both.

You may find yourself reading every article you can find on the internet, that is not a good idea try and stick to realistic websites like this one, Macmillan, Cancer uk etc. Reading up about the various stages and the treatments for each stage will give you some background but do not assume that your Husband is in any particular stage until his Consultant tells you what that is.

Be a regular visitor on this forum and feel free to ask about anything and I mean anything, nobody is shy on here at all. 

Best wishes

xx

Mo

User
Posted 12 Jul 2014 at 15:00

Hi Carol. Mo is right, the PCa toolkit is a good place to start. When my OH was diagnosed last year I also rang the specialist nurse helpline just to have a good cry and offload to a compassionate  uninvolved party. The hard thing is, you are trying to support your OH and trying to cope with your own feelings which can be pretty devastating. Waiting for results of tests is awful but when you have then you can move ahead with decisions about treatment and options.  Please keep posting, there is a wealth of support here. I found it helped to learn as much about the disease as possible so as to be an advocate for my partner in consultations, etc. Not everyone wants to go that route but if I hadn't done that learning I would not have known what to ask on behalf of Neil or demand as sometimes happened !!

Let us know what happens with the tests and in the meantime remember there are people here who have had experience of every aspect of PCa and who will hopefully post to support you.

 

Fiona.

User
Posted 12 Jul 2014 at 15:17
Hi Carol,

Sorry for your news. I was diagnosed a few weeks ago & just waiting for my op. I was offered a radical prostatectomy, radiotherapy (2types) or watchful waiting. I struggled to take it all in & make the choice but there's lots advice here, with Macmillan's & also through support groups.

I agree totally with the others. The PCUK information is all excellent, free & it will be delivered within a day or two of you ordering it.

My head was spinning at first. I learned to write questions down when I go to see consultants now & jot down the things they say too. PCUK nurses again are wonderful. They will call you or you can telephone them & they are really good. My wife has spoken to them too & it's helped her a lot.

I looked up my local prostrate cancer group and went along. The NHS support worker was there & he was able to refer me to the incontinence nurse to prepare me for coming out after the op. Apparently I'm having 3 months worth of pads delivered in the next few days lol & also arranged for the district nurse to call me too.

Very good luck and best wishes to you all, hope things get better soon.

Carlos

Life's a Marathon. Run in peace.

User
Posted 12 Jul 2014 at 16:24
Hello Carol,

sorry to hear your news I feel that others have given you good advice so no point on reapting what has already been said but it does get easier in time the only advice I can give you is how we deal with this is don't treat him any diffrent than you would normaly talk to each other as you will find that both of you will have many of the same thoughts when the time is wright we all know our OH when they just need a cuddle or some quite time.Please stay on the forum they are a good people on hear and they do care if you want to read anymones profiles just click on thier avatar and you will read some amazing positive stories please keep posting it helps.

Carol Eric

User
Posted 12 Jul 2014 at 18:18
Carol

As previous posts stay positive, I was diagnosed Dec 2013 by 12th June I was free of cancer and no incontinence, the only side effect is ED due to significant amount of disease, and there are ways round that. There are plenty of success stories on this site make yours another one. As said before use the forum the nurses and when he is ready talk to other PCa patients.

Thanks Chris

User
Posted 12 Jul 2014 at 18:31
Dear Carol,

When I was first diagnosed (in 2005), I was in shock.

However, looking at the profiles of men here who had survived 10 years and more gave me inspiration.

To see profiles like that, click on the name beneath the avatar of any member here.

You can also see 'Personal Stories' in the topic list here.

It is also well worth looking at 'posts from the old forum' (they're on that list too).

You and your husband need hope and encouragement right now.

Good luck with everything, and DON'T PANIC!

All the very best,

George

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User
Posted 12 Jul 2014 at 19:39
Hi and sorry you find yourself here. But you've come to the right place both for advice and support. I totally agree with the others, order the toolkit as this will help you prepare for any consultations.

It is without doubt the worst part that you are currently going through, it will get better regardless of the prognosis as you will at least know what is happening.

The MRI and bone scan are painless procedures. Once you have the results from them your consultant can meet with you to talk about your treatment options.

How many cores were positive from the biopsy?

Bri

User
Posted 12 Jul 2014 at 22:42

 

Like everyone else here I was diagnosed with cancer too. It is life changing but it is also something that can and will be treated. My advice is to learn everything you can about it as this will allow you to understand and make the right decisions about  which treatment path to opt for. It is a battle that can be won as many of us can confirm.

 

I hope everything goes well for you in the coming months,

 

Steve

User
Posted 14 Jul 2014 at 00:31

utmost sympathy but dig your heels in and wait for facts;

27 PSA is not that high (half of mine last may) but Gleason 4/5 isn't great news, yet again it isn't the worst.  I'm still here!

Now you need the scans (takes several weeks, but meantime he'll be given hormone tablets which ALWAYS work)

Best practical advice is what you read here from other posts, and in addition, keep notes & dates of each event, treatment, blood result and what the consultants suggest.  Get a handle on what is being told to you.  I was really confused especially at first, thank goodness family members elected to come with me to consultations.  The patient will never remember everything accurately.

The nurses are terrific, there are loads of help lines, and don't forget the GP can explain stuff later on when you are collecting thoughts.

If you get an offer to go onto clinical trials, grab it;  I got extra treatments as a result and the glowing thought that, whatever happens to me, I have advanced knowledge and the fight against diseases: it gives me purpose.

You'll have to adjust life a lot, but there's nothing that can't be worked around.  Above all, talk about it, post on here (wish I'd found this earlier), do not bottle things up, and remember the best nurses in the World are right next to you for support.

My hope is with you every step.

User
Posted 14 Jul 2014 at 07:52
Hi just to be clear your OH won't necessarily be given hormone tablets at this point. They will likely want to determine the staging first ie how advanced the cancer is. They will discuss this with you along with a treatment plan. Hormone Therapy may or may not be part of that plan

Bri

User
Posted 14 Jul 2014 at 11:59
Also in some rare cases hormone treatment does not work well at all and sometimes men become resistant to it very quickly. Others can take it effectively for many years it is one of those each case is different. Scenarios i mentioned before. However there are many types annd many treatments so for now. Go with your medical team and what they advise. Please let us know how you are getting along.

Xx

Mo

User
Posted 24 Jul 2014 at 15:36
Dear Carol,

Sorry to hear of your OH story. Thought I'd just add my tenpenorth! I had psa 29.9 at diagnosis, Gleason 4+5, Stage T3N0M0.

Was put on Hormone Therapy, to be followed by Radiotherapy. Waited 7 months before undergoing 37 sessions at Newcastle Freeman. Came of the Hormones on last day of Radiotherapy (my choice - doctors wanted me to stay on for 2 1/2 years - but I found the side effects unbearable). PSA went up to 3.0, but remained off Hormones, it has steadily dropped down to 1.6 at last check (now 6 monthly). Next appointment/blood check next month. Without my wonderful wife and family I don't think I would have coped. I know it may come back but you just have to get on with life, I have not had any time off work with it - I had late appointments for the Radiotherapy and my boss was very understanding. As others have advised you, get the toolkit, read all of it - stay optimistic!

Regards

Sammy

User
Posted 24 Jul 2014 at 17:15

Hi Carol, Sorry to hear your news.  You can get so much positive support on this site from guys in similar situations.  Have a look at my profile to see what can be done for your husband.  I'm not out of the woods yet but I hope this will be an encouragement for you.  Arthur

User
Posted 19 Sep 2014 at 23:19

Thank you to everyone who have replied with support and there own experience, does help. All the results and speculation is now over, thank god. The outcome is not great, Gleason score 9, aggreesive, T3b Advanced Localised PCa spread to seminal vesicles and pelvic lymph nodes, the good news is it has not spread to bones or other organs, MRI and bone scan clear. Had commenced HT after the bone scan in July, PSA now down to 10, now on Zoladex, starts a course of radiotherapy the end of October for two months. A bit of a emotional roller coaster ride for all the family but we are trying to keep positive.

User
Posted 19 Sep 2014 at 23:24

I alos forgot to mention that he will also be going on  STAMPEDE drug trial, will find out on Monday which research arm he will be in, he feels positive about this in terms he will monitored more closley and also helping research for future treatment for people with PCa in the future.

User
Posted 20 Sep 2014 at 10:07

Dear Carol

My OH was diagnosed in Dec 2011 with G7, T3b with same spread as your OH including some lymph nodes. He had same treatment of Hormone therapy then radiotherapy of the prostate and pelvis for the 37 sessions plus he went on the Stampede trial.

We had the Abiraterone Arm (which I don't think they are recruiting for at the moment) but the additional appointments were reassuring.

The trial drugs are finished now (after 2 years of taking them) and he remains on HT injections only.

He currently has 6 monthly PSA checks at the hospital with the Trial Onco (although we do it with the GP as well so they are actually 3 monthly).

They said that there was a 50/50 chance of a cure, but we will not know if he is cured unless he gets a 10 year after result. We just hope and pray.

My point is that they may be trying to cure your OH too, which means there is hope!

All the best

Alison

Edited by member 20 Sep 2014 at 10:11  | Reason: Not specified

User
Posted 27 Sep 2014 at 09:34

Hello Carol,

 

Sorry to hear that it is T3b and Gleeson 9, but the good news is that it has not spread into the bones, and the treatment he will be given is regarded as "curative".  I was diagnosed in May 2011 with T3b, PSA 41, Gleeson 8, and went onto Hormone Therapy for 4 months, then Radiotherapy for 37 sessions over 2 months. The HT reduced my PSA down to 3.0, and I stayed on the HT for 2 years after Radiation Therapy. It took the full 2 years, but finally my PSA has gone down to "less than 0.1". It is a long haul, and on the way there are black times: in my case when my PSA went up from 0.5 to 0.8. However, I received good support from my GP, have changed my diet to try to stop any cancer returning, or any remaining to re-grow. In this way, I feel I am "taking some control" over it!

Radiation Therapy was OK, are side effects, but nothing that could not be managed.  The staff were very supportive and helpful, and I got to know quite a few other "sufferers" going through the same process, some of whom I am still in touch with.

 

Glad you have been offered "STAMPEDE"... you will get good monitoring, and the chance to ask questions more often. Please let us know which arm you get.

 

The Hormone Therapy does change you... but certainly with the support of my wife, we adapted to the changes: after all, the alternative was not too clever!

 

All the best,

Peter

Edited by member 27 Sep 2014 at 09:35  | Reason: Not specified

User
Posted 01 Nov 2014 at 08:03

Thank you all again for all your advice and comments, very helpful. Just to give an update on my Oh.PSA has come down to 4 which is great. Has also been randomley chosen to go on the STAMPEDE drug arml. For the first time they are combining two drugs to be taken together, Enzalutimide and Abiraterone. starts radiotherapy next week. Doing ok and just getting on with it however dificult at times as he is not sleeping well getting up a couple of times during the night and is tired all the time, also starting to have regular hot flushes, not bothering hime to much at the moment but it is the lack of sleep that is getting him down. Would appriciate some adice on how to deal with this.

 

User
Posted 01 Nov 2014 at 15:28
Carol

Hi given all the recent discussions about enzalutamide and abiraterone it is quite a surprise that the next stage of the stampede trial is giving them both together. The normal NICE guidelines are going to be well and truly broken for this so it will be very intersting to see and hear how your OH gets along with this.

As for the lack of sleep and tiredness it is probably the stress and strain of coping with the fact that he has cancer albeit at this stage still manageable if not curable. I would have a chat with your GP to see if he thinks any medication would help a lot of Men and indeed partners take a mild stress reliever/anti anxiety drug such as Citalopram. It nees to be thought about though as these supplement seratonin so you cannot just stop taking them.

Not sure about natural remedies but I am sure someone will come up with some ideas for you.

Please post about your OH's experiences on this new arm of the stampede trial as I am sure others will be keen to hear about it too.

xx

Mo

User
Posted 01 Nov 2014 at 17:36

Carol is he having problems sleeping or having his sleep disturbed by hot flushes, loo visits etc? Or is he sleeping okay but still tired? If asking the GP or anyone else for help, you need to be clear about the difference between tiredness and fatigue.

If he is not sleeping well, you could ask for sleeping tablets as Mo suggests, or request flomax or similar to reduce the night loo trips or try one of the remedies for hot flushes (depending what the problem is). You could also try lavender oil products such as 'This Works' from Boots which includes in the range a pillow spray, massage oil, wrist dabber, bath soak and others. I have just ordered this for John but it hasn't arrived yet so I can't say whether it has been worth the money! Let's hope so.

If he is suffering fatigue, this is a very common side effect of the hormone treatments and it might be worth you speaking to PCUK who have been doing some work in this area. You should also discuss it with the Stampede nurses.

Edited by member 01 Nov 2014 at 17:38  | Reason: Not specified

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

User
Posted 02 Nov 2014 at 10:01

Dear Carol

The lack of sleep has been an issue for my OH too, for 3 years, since dx. It seems to be caused by the worry and the nocturia. He just does not get into a deep sleep, so his bladder wakes him up when the rest of us might sleep through it.

The only time he has had a few nights rest was when he was on strong painkillers for a bad back (unrelated to the Ca). We have talked about sleeping pills but he is reluctant to take yet another pill.

The upshot is that he is really tired all the time which affects all the family and can then obviously affect moods (for us - with 2 young children he never gets a rest in the day either)....so pretty difficult ongoing.

I too would be interested to hear any further comments on this problem, as we all know, nights without sleep really do affect the rest of our lives.

All the best

Alison

 
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