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Husband has just been diagnosed

User
Posted 05 Oct 2014 at 14:23

Hi all, I am new to the forum & very glad that I have somewhere to go for some support!

My husband was diagnosed with prostate cancer on Friday 3rd Oct which was a massive shock. He is 58 and we have 3 young children, 8, 7 and 5. All we know so far is that he has 'had it for some time' and his Gleason Score is 8 and was described as 'agressive'. He now has to make appointments for an MRI and bone scan to see if it has spread beyond the prostate.

I really just wanted to ask if anyone had some advice as to 'what they wished they'd done' in the early days of getting the diagnosis, if only someone could have told them.

Really appreciate any advice, many thanks x

User
Posted 06 Oct 2014 at 01:46

Countryboy (AKA qwerty), Miss has been told it is aggressive because it is a Gleason 8.

Any Gleason of 8, 9 or 10 seems to be described as aggressive in clinics :-( You could probably look back now and think that your rise at diagnosis was less about aggressiveness and more about whatever you did in the preceding 48 hours!

Miss, wait to see what the rest of the results show .... aggressive is such a scary word but doesn't necessarily mean what we all think when used in relation to prostate cancer.

Edited by member 06 Oct 2014 at 01:54  | Reason: Not specified

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

User
Posted 06 Oct 2014 at 19:10

" advice as to 'what they wished they'd done' "

 

 Hmmm. Hindsight wishes. Wish I'd sorted out the diet angle straight away as it is something one can do to be helping oneself to slow progression.

Surgery was ruled out based on my diagnosis figures. With the more modern scanning techniques , the opinion / results from the radiographer are of prime importance at this time for you. And that's where a second opinion might have best value looking at them. Often a neglected aspect.

Never be guided by potential side effects you may read of regarding choice of treatment. Always ask about the most effective approach based on your particular diagnosis & the biology. Assuming you are looking to cure or very long-term control. And then make your decisions as to what is personably acceptable.

 

 

 

 

User
Posted 06 Oct 2014 at 20:05

Answer to your question: learned the difference between being positive and being 100% positive. The latter seems most times to exceed treatment expectations.

By the way aged 58 Gleason 8. Now aged 69.

Good luck

Ray

User
Posted 07 Oct 2014 at 18:34

🍺🍺🍺🍺?

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

User
Posted 07 Oct 2014 at 21:53

Hi Rob,

 

Thanks for your message and wonderful advice. You are the only person who has mentioned diet so far. This was the first thing that I jumped on and instantly after diagnosis we have gone dairy free, ditched the alcohol, taking the Pomi-T tablets and are following the Plant Programme. Luckily my husband is a very good patient and has totally taken on board the new diet, even managing to drink 2 mugs of green tea this afternoon!

So any other thoughts about diet that you have I'd be really interested to hear them.

Many thanks,

Miss

User
Posted 09 Oct 2014 at 19:07

Hi Miss,

 

Have pm'd you my regime which may be useful.

I can't recommend the Prostate Care cookbook as I have active cancer. I'm sure it is fine for those who don't though & just want to " Care " for the prostate as the title suggests.

The Plant program is  better  so long as you follow the " active cancer " sections whilst on treatments.

 

Show Most Thanked Posts
User
Posted 05 Oct 2014 at 17:53

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.

User
Posted 05 Oct 2014 at 17:58

Hi there,

Sorry you have to join this group but you will find reassurance here. Diagnosis time is difficult, the waiting for results, interpreting them and then taking the right action, the best place to start is to get the PCUK Toolkit which can be ordered on this site. It gives you lots of information to guide you through the next few difficult weeks.

There is so much uncertainty at this stage but that does mean you should not stay hopeful and positive and wait for the results. If you have no spread to the bones or soft tissue and the scans will tell you that, you could well be on a path which can control this disease through either surgery or radiotherapy or both. Survival rates for those in this position is very good. Even if you have spread do not despair. There are many men here who survive for long periods depending on the starting point and the very individual nature of the disease progression itself. I have bone met spread but three years on I am well and still working. There is still all to play for.

So if you can give us details of your situation as you get to know them people will advise on next steps. Please keep coming back and asking any questions in your head, we have all learnt to ask and find out to take control of the situation. Good luck in your journey.

User
Posted 05 Oct 2014 at 19:28

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

User
Posted 05 Oct 2014 at 19:42

Miss

Stay positive, keep calm and do not get stressed. Until you get results of scans etc you will not be able to make the right decisions. I was diagnosed in December 2013 slightly lower gleason but 10 months later, although still being monitored PSA undetectable and the side effects not as bad as I expected. In hindsight the only thing I wished I had done was involve the wife in the early stages, more for her than for me ,I wanted to do it alone. Good advice already from the other members.

 

Thanks Chris

 

 

 

 

User
Posted 05 Oct 2014 at 19:58

.

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

Nil desperandum

Allister

User
Posted 05 Oct 2014 at 20:10

Miss,
My husband, Pete, was diagnosed with Pca. in July 2013. He was "lucky" enough to be recommended for the Stampede trial, which has resulted in him having a good shot at various meds, that aren't generally prescribed.
When he was diagnosed, he had a Gleason score of 7, and the cancer had spread to his bones. He was 66, and had had severe back pain for some months, which we just thought was "severe back pain" Now we know. I wasn't so frightened whilst waiting for the scans and MRI results, but afterwards when I knew, I was terrified for him. Luckily, he was happy for me to come to appointments with hi, and talk to the consultants and GP.
He first prescribed Prostap, which is a 3-monthly injection hormone into his stomach. (You can have it in the bottom, if desired!)
His PSA which had been 291 shot down to 2, which was wonderful. Then for the next few months, it went slowly back upwards. In February, he was prescribed Casodex, which was absolutely useless in PSA terms. He was just tired all the time.
In June, he was given Abiraterone (Abby) for short, and he seems to be responding well to this. His PSA is going down slowly, and he is much less tired. He got the Abby, as he was on the trial. If there is any chance of your husband going on one, go for it!! This b......y disease is different for most men, and it is very difficult to predict how things go. I feel slightly happier now that his PSA is going down!!. Be strong with the Doctors. Don't forget to make a note of any questions he or you may have for them, All our best wishes for you and your husband

User
Posted 06 Oct 2014 at 00:02

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.

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

User
Posted 06 Oct 2014 at 00:05

Hi all, I am new to the forum & very glad that I have somewhere to go for some support!
My husband was diagnosed with prostate cancer on Friday 3rd Oct which was a massive shock. He is 58 and we have 3 young children, 8, 7 and 5. All we know so far is that he has 'had it for some time' and his Gleason Score is 8 and was described as 'agressive'. He now has to make appointments for an MRI and bone scan to see if it has spread beyond the prostate.
I really just wanted to ask if anyone had some advice as to 'what they wished they'd done' in the early days of getting the diagnosis, if only someone could have told them.

To answer your specific question: I wish that I had been given all the options regarding treatment, and not just the treatment options offered by my local NHST. I was offered Brachy, Open Surgery, HIFU.

A chance conversation with an acquaintance informed me of the Robotic option, and that it was available locally to me, but I had to ask for a referral. Having looked in to all my options, I decided to ask for a referral. I had a robotic op at Reading on 2nd May 2013, and although I had some issues, still have some issues, I also have the issue of LIFE and would not change my course of action.

How do you know that your partner's cancer is aggressive? I know mine was due to the fact that my PSA went from 5.5 up to 6.4 in 2 months.

I wish you both well.

Dave

User
Posted 06 Oct 2014 at 00:22

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

User
Posted 06 Oct 2014 at 01:46

Countryboy (AKA qwerty), Miss has been told it is aggressive because it is a Gleason 8.

Any Gleason of 8, 9 or 10 seems to be described as aggressive in clinics :-( You could probably look back now and think that your rise at diagnosis was less about aggressiveness and more about whatever you did in the preceding 48 hours!

Miss, wait to see what the rest of the results show .... aggressive is such a scary word but doesn't necessarily mean what we all think when used in relation to prostate cancer.

Edited by member 06 Oct 2014 at 01:54  | Reason: Not specified

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

User
Posted 06 Oct 2014 at 07:19

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

User
Posted 06 Oct 2014 at 09:50

Thank you so much to all of you for your quick, comforting and wondeful advice. I have never 'posted' anything in a forum before so I hope this heartfelt message of thanks gets to you all. My husband is phoning the doctor today to find out what his PSA score is. Tomorrow he is able to phone up to make his MRI and bone scan appointments.

I really appreciate all your help and advice, and it's very reassuring to know that I am not alone

Miss x

User
Posted 06 Oct 2014 at 10:01

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

Stay Calm And Carry On.
User
Posted 06 Oct 2014 at 10:58

Two things your husband and I have in common is that we were dianosed at 58 years with an aggressive prostate cancer. On the positive I am still here and pretty active at 64!
I still have P Ca which was discovered 18 months ago by a template biopsy. It is not aggressive which was confirmed by a Choline PET Scan in March this year. I will be seeing the consultant oncologist who has been treating me for the past six years again soon.
I feel that it is possibly a long term situation which will influence treatment choices made once the results are known. Positive thoughts to you and yours during this time of waiting but remember you are not on your own.

Edited by member 06 Oct 2014 at 11:01  | Reason: Not specified

User
Posted 06 Oct 2014 at 15:00

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

User
Posted 06 Oct 2014 at 19:10

" advice as to 'what they wished they'd done' "

 

 Hmmm. Hindsight wishes. Wish I'd sorted out the diet angle straight away as it is something one can do to be helping oneself to slow progression.

Surgery was ruled out based on my diagnosis figures. With the more modern scanning techniques , the opinion / results from the radiographer are of prime importance at this time for you. And that's where a second opinion might have best value looking at them. Often a neglected aspect.

Never be guided by potential side effects you may read of regarding choice of treatment. Always ask about the most effective approach based on your particular diagnosis & the biology. Assuming you are looking to cure or very long-term control. And then make your decisions as to what is personably acceptable.

 

 

 

 

User
Posted 06 Oct 2014 at 20:05

Answer to your question: learned the difference between being positive and being 100% positive. The latter seems most times to exceed treatment expectations.

By the way aged 58 Gleason 8. Now aged 69.

Good luck

Ray

User
Posted 06 Oct 2014 at 21:27

Hi all,
My husband phoned the surgery today to ask for his PSA score (he had 2 tests, about 2 weeks apart & they both came out high) and was told 19.4. So with his Gleason score of 8, that is all we know at the moment. He will phone the hospital tomorrow to arrange his MRI and bone scan.
One good piece of news, he is being treated at Torbay hospital which I heard today came out really well for patient care :-)

Many thanks,

Miss

User
Posted 06 Oct 2014 at 21:32

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.

Barry
User
Posted 06 Oct 2014 at 22:39

Originally Posted by: Online Community Member

Countryboy (AKA qwerty), Miss has been told it is aggressive because it is a Gleason 8.

Any Gleason of 8, 9 or 10 seems to be described as aggressive in clinics :-( You could probably look back now and think that your rise at diagnosis was less about aggressiveness and more about whatever you did in the preceding 48 hours!

Miss, wait to see what the rest of the results show .... aggressive is such a scary word but doesn't necessarily mean what we all think when used in relation to prostate cancer.

 

All noted Lyn,

There exists the possibility that my Gleason increase was nothing to do with anything I had done, but was purely down to aggressiveness of my cancer.  How much would any "activity" increase a Gleason score?  I don't know.

I note that Miss's partner's Gleason is now apparently 19.4 up from 8.  Does that make sense?

Dave

User
Posted 07 Oct 2014 at 00:41

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.

Barry
User
Posted 07 Oct 2014 at 01:35

DD, are you okay? Your posts seem a little 'odd' for you and I had to check back in case I had misunderstood and Qwerty wasn't you at all :-(

You said above that your PCa was aggressive because your PSA rose from 5.5 to 6.4 ... no-one mentioned your Gleason rising due to activities!!! Miss tells us that her partner's Gleason was 8 and the PSA was 19.4 ... no mention of the PSA rising from 8 to 19.4 at all.

Hope all is well with you

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

User
Posted 07 Oct 2014 at 06:57

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

User
Posted 07 Oct 2014 at 08:49

Bri,

You have lost 1000 it was 13000, I knew we would be famous for something.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Oct 2014 at 15:18

Originally Posted by: Online Community Member

DD, are you okay? Your posts seem a little 'odd' for you and I had to check back in case I had misunderstood and Qwerty wasn't you at all :-(

You said above that your PCa was aggressive because your PSA rose from 5.5 to 6.4 ... no-one mentioned your Gleason rising due to activities!!! Miss tells us that her partner's Gleason was 8 and the PSA was 19.4 ... no mention of the PSA rising from 8 to 19.4 at all.

Hope all is well with you

 

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

User
Posted 07 Oct 2014 at 18:34

🍺🍺🍺🍺?

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

User
Posted 07 Oct 2014 at 21:47

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

User
Posted 07 Oct 2014 at 21:53

Hi Rob,

 

Thanks for your message and wonderful advice. You are the only person who has mentioned diet so far. This was the first thing that I jumped on and instantly after diagnosis we have gone dairy free, ditched the alcohol, taking the Pomi-T tablets and are following the Plant Programme. Luckily my husband is a very good patient and has totally taken on board the new diet, even managing to drink 2 mugs of green tea this afternoon!

So any other thoughts about diet that you have I'd be really interested to hear them.

Many thanks,

Miss

User
Posted 07 Oct 2014 at 22:26

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

Bri

User
Posted 08 Oct 2014 at 09:02

Miss,

 

I can recommend two books, both of which helped me get myself back in the 'driving seat'....

The Guide to Surviving Prostate Cancer - Dr Patrick Walsh. 

Lifestyle after cancer - The facts - Professor Robert Thomas.  Covers diet, exercise etc. and although 'generalist' it draws a lot of examples from people coping with prostate cancer.

 

The one thing I wish I had done in the early days is to have badgered my local MDT team to get on with a referral. I thought I was special at the time but son learnt one is just a number.

 

flexi

 

User
Posted 08 Oct 2014 at 16:49

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

User
Posted 09 Oct 2014 at 19:07

Hi Miss,

 

Have pm'd you my regime which may be useful.

I can't recommend the Prostate Care cookbook as I have active cancer. I'm sure it is fine for those who don't though & just want to " Care " for the prostate as the title suggests.

The Plant program is  better  so long as you follow the " active cancer " sections whilst on treatments.

 

User
Posted 10 Oct 2014 at 01:34

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.

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

User
Posted 10 Oct 2014 at 20:30

Thanks Lyn,

I did read it through a while back & made comments at that time.

 

http://community.prostatecanceruk.org/posts/t3517-New-cook-book-to-help-fight-male-cancer#post41575

 

There are certainly some ingredients such as soybean oil in the recipes to be well-avoided by all stages of P.Ca. cases. That & other ingredients put me off.

User
Posted 10 Oct 2014 at 21:47

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

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

User
Posted 11 Oct 2014 at 19:13

I wonder if they have looked at all of the more recent studies & still agree with all those ingredients as being benign for us ?

Some books become outdated quicker than others.

 

Other than Canola oil & the on-going question over flaxseed, this  contains much useful info. and references.

 

http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

 

 

 

 

Edited by member 13 Oct 2014 at 17:04  | Reason: Not specified

 
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