Husband has just been diagnosed

So sorry to hear your husband has been diagnosed. You will find lots of support here so do post with whatever results the scans come up with.

My answer to your question would be absolutely go for a second opinion when your husbands results are known. PCa is such a complex disease and you need as many options as possible. Also, have an oncology team you feel you can trust, who are willing to explain things to you and fight your husbands corner if it comes to considering some of the newer treatments out there, but first you need the other results to get the full picture.

My other suggestion would be to get enough support for yourself, the specialist nurses on this site are great. I have just started to take advantage of Macmillans literature and their local drop-in service, also brilliant, Pca has so many implications for relationships, often not taken on board by whoever is advising, prescribing treatment. Getting on a Clinical Trial if your husbands results qualify him for this is also often helpful as there is increased monitoring and sometimes access to newer drugs. I wish you all the luck in the world, keep us posted what is happening,

Regards, Fiona.

Some good advice given already.
This is the worst time. I was diagnosed almost 2 years ago . I have had surgery to remove the prostate and radiotherapy. No other treatment and currently a very low PSA.
The bone scan and MRI, as Paul says, will determine what stage the cancer is at. Hopefully it will be contained in the prostate. But if it isn't treatment can be offered for many years.

I wouldn't worry about 2nd opinions yet. Wait till you get your full results so you are clear what is happening. Post your results on here and you will get lots of good advice

Bri

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Hi Miss

I see there have been several good responses already http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

I am in the incurable camp but until you hear otherwise, your husband may have every chance of beating this awful disease. As Yorkhull (Paul) had advised, please give us more detail to work with e.g. PSA. Also have a look at my profile (click on alathays) to see how I'm approaching 7 years with full blown metastatic disease disease to bone http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif. Back to your question though - what would I have done differently? Firstly I would caution that unless you have private medical cover, you will follow what is known as NHS "Best practice". This itself will be determined by the scans. If negative you have a number of options, divided across surgery and Radiotherapy (RT). If positive it get a little trickier but immediate Hormone Therapy (HT) will ensue. If I could have changed anything it would have been to have Chemo earlier but that's a purely personal opinion and as yet not relevant to your husband's situation. I wish him luck with the scans and please come back to let us know http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

Hi Miss,

what worked .... being well read up on prostate cancer and the various treatments before my husband's appointment to get the scan results so that we could talk knowledgeably about the pros and cons of the various treatments

what I wish had been different .... John was offered radical (curative) treatment and his specialist advised us to go away for a holiday before the treatment started - just a chance to gather our thoughts and spend some happy time together doing the things that couples do. In the event J was much in too much of a hurry to get it sorted and the holiday didn't happen, something that we both regretted later as the next couple of years were quite tough emotionally.

Hi Miss,

Welcome to our community.

I can't add much to what has already been said but I wanted to say how wonderful the support is here.

I was only diagnosed in June, have been on hormone therapy since then and am just about to start radiotherapy next week.  It's been a really difficult time in my life but the help I have received here has been priceless.

I hope everything goes well with the scans and please let us know how it goes.

I'll be thinking of you both.

Steve

Dear Miss

I cannot add anything to the wonderful advice that you have been given above, except that I have 2 young children too, aged 6 and 2. My OH was 62 at diagnosis when I was pregnant with our 2nd son (I am now 40) so I do have understanding from that point of view, which does bring in some different aspects as well as the usual worries and fears.

You are not alone in fighting this disease.

Keep strong for the children and your hubbie.

Keep in touch

Alison

I am in the 'Lucky' camp as I was diagnosed relatively early. My dad and his dad both had prostate problems, so i was straight off the GP as soon as I had any change in peeing habits. I can't remember the reason for my first visit, but for the 2nd, I wasn't emptying my bladder in the morning and was going again 5 minutes later.

The PSA had risen after the 2nd visit - eventually I had robotic surgery last April.

The worst part of this is that there is no routine screening as there is no surefire symptoms, and there is a need to educate men and partners on symptoms to watch out for. Even then, no obvious symptom may be present to suggest PCa.

Apart from keeping regular flowcharts from age 40 on how often and how much is being emptied by the bladder, and looking for changes, or changes in strengths of erections, there is little you can do. Even PSA is not a definite symptom, only a sign that PCa might be present.

All very haphazard. Sorry your husband is in the club, but try not to get stressed, read as much as you can. There are long term survival prospects and a variety of treatments. Meanwhile, try and get on with your lives as normally as possible, and enjoy nurturing your children in these special years.

Paul

Hi Miss,  I was stupid and didn't go to the doctor soon enough but it sounds like your husband has thankfully.  Click on my name and look at my profile to see what my situation was, i've had hormone injections and radiotherapy and feel really good - I hope this will encourage you

A very important part of diagnosis is 'Staging'. The MRI scan can help determine this. An assessment is made on whether the cancer is thought to contained, locally advanced or advanced and in the latter case if there is evidence of spread as shown in a bone scan. Although a Gleason of 8 is aggressive, there is potentially the chance of a better outcome with this if the cancer is contained than say with a Gleason of 7 that is locally or more advanced. In any event, treatments are continually improving whatever your husband's diagnosis may be so do try to remain positive. It certainly does help if you read up on PCa. The 'Tool Kit' on the main part of this Charity web site is a good place to start.

Dave,

I think you have misread the post from our recent member 'Miss'. She clearly said that 2 PSA tests were "high" and was told this was 19.4. As you are doubtless aware, the maximum Gleason is 5+5=10. There are a number of reasons including activities why PSA may be elevated. Gleason score increases according to mutation. This mutation may vary with the type of PCa and factors specific to individuals which may be unique and may be unpredictable. I have never seen any report suggesting that Gleason is upgraded by 'activities' in the way that PSA can be.

Miss

What I would avoid doing is googling PSA scores etc.

You will in all liklihood read loads of rubbish. The PSA is an indicator. 19.4 is higher than normal but if you read some profiles on here you will see it pales into insignificance eg Trevor Booth was 12000 on dx.

I'm surprised that you are having to phone to arrange an MRI and bone scan the urologist should have referred your other half for these.

Anyway, it is easy for all of us to advise you not to worry but try to believe it does get easier and some sense of normality will return. In the meantime go on to the publications area of PCUK and read, read, read. Depending on the outcome of the next tests you may have decisions to make about treatment. Forewarned is forearmed

Take care
Bri

Blimey I did misread a lot of that, didn't I?

No idea why, and my apologies for any confusion.

Dave 

PS: I am well thanks for asking http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif

Hi again,

Just to keep you updated, my husband will be having his MRI scan on Friday 17th Oct, and the date for his bone scan is coming through the post so they couldn't tell us that one! We are trying to be positive and at times life seems to carry on as normal, until you remember again and can't believe that all this is happening. We have told quite a few friends and colleagues now and everyone has been very supportive.
Thanks again for all your kind words and helpful advice,

Miss x

Good luck with the diet.....I thought about giving up the alcohol, but I'm no quitter

Bri

To the books that flexi recommended (both of which I have) I'd like to add The Prostate Care Cookbook by Margaret Rayman. This has a useful introduction discussing the properties of many foods and over 100 recipes. The Moroccan Lamb Stew is tasty.
Viv

On the contrary Rob, the cookbook includes some very useful information on diet for men with advanced cancer as well as younger men who would like to avoid developing cancer later in life. The group that is not particularly addressed in the cookbook is those men who have had treatment and would like to help their bodies prevent it from returning.

Apparently, the Prostate Cancer Research Foundation does not agree with you Rob!