Where are the Gleason 10's and how are you doing

User

Posted 26 Jul 2016 at 16:17

Hi all

I posted in another conversation about my OH who Has been diagnosed as G10 T3. Just had his first hormone injection. There is a query on the bone scan so waiting for another bone scan in 3 months to see if RT is an option.

I have seen lots of G9's on the site but not many G10's I was wondering what their stories are.

User

Posted 26 Jul 2016 at 20:30

Hi Mountain Stream

My hubby is a G10. The great news is that he was diagnosed aged 61 in Dec2010. The cancer had already spread to hips, head of femur, and several places in his spine also into nearby lymph nodes. PSA was 25. He has done really well, only had a brief problem with casodex when zoladex wasn't holding this back and he was put on to stillbestrol and three years later, it is still working. The less good news is that he now has a supra pubic catheter due to the cancer blocking his urethra and invading the bladder. He is near to kidney failure but he is scheduled to have an operation shortly to redirect the ureters to sort this out. I would say that for us, most of the issues he has had have been down to side effects of treatment rather than the cancer directly.

Anyway, he is still with us and we are still doing our best to enjoy our time together. In nearly six years we have seen our girls married and the arrival of a beautiful granddaughter. We are very, very lucky people.

Kindest regards

Devonmaid

User

Posted 26 Jul 2016 at 21:12

Thanks for the replies everyone.

Devonmaid it is encouraging to hear your hubby has been doing so well. I guess we are at the start of this journey and I am sure we will be making the most of the support and advice on this great site.

Thank you all once again.

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User

Posted 26 Jul 2016 at 18:42

Can't help you Mountain but don't want your post lost so hopefully it will now move up the list

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

User

Posted 26 Jul 2016 at 19:00

Mountain stream,

If you haven't done so already, if you click on the "Show Search" button above, and enter.... G10, this will bring up a list of threads. You can then navigate through each thread or straight to the member who posted. A bit long winded but it might help you find what you're looking for

Flexi

User

Posted 26 Jul 2016 at 19:15

Hi Mountain Stream,

It seems to me that in part this may be due prostate cancer frequently being diagnosed earlier before the most mutated cells have taken hold and become the majority. Moreso In the USA, where men tend to be tested and treated earlier, so there are even fewer Gleason 9's and 10's posting. I see your OH has a staging of T3 and is due to have another bone scan. Hopefully this will be clear and the HT will stop or delay any spread.

Barry

User

Posted 26 Jul 2016 at 20:30

Hi Mountain Stream

Kindest regards

Devonmaid

User

Posted 26 Jul 2016 at 21:12

Thanks for the replies everyone.

Thank you all once again.

User

Posted 26 Oct 2016 at 01:31

Hello everyone. I am not sure if I am posting properly but I hope this gets seen. We have now had the second bone scan and the PSA. The PSA has come down from 15 to 0.6. However the shadow on the bone has shrunk and a further shadow has been identified during this Sep scan so the conclusion is that the cancer has spread to the bone. Now being transferred to oncology to discuss next treatment options. They say RT is not an option but maybe early chemo is. The nurse said this chemo is particularly aggressive and would 'knock OH about'. At a later time he may be able to have the Radium treatment but not now.

Ion work full time 120 miles away from home and currently commute weekly returning at weekends. OH is retired, we have a huge mortgage and I can't afford to give up work. How am I going to care for him if the treatment makes him so poorly? I know there are lots of wives and partners on this site caring for their loved ones, how have you coped, I know everyone is different and you may not want to worry me too much but I need to know what to expect so any advice would be really appreciated

User

Posted 26 Oct 2016 at 09:36

Hello again Mountain stream. Just to say I'm sorry the news wasn't better and to let you know your post has been picked up.

Others will be along at some stage.

*****

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

User

Posted 26 Oct 2016 at 12:45

On a practical, financial aspect, is there a Macmillan centre in your hospital? It would be worth calling in for a chat, they are experts in pointing you in the right direction for help. Also, it may be possible if your husband has life assurance that it may be paid out. Just depends on the prognosis but I would definitely chat to the Macmillan people, they are wonderful.

Good luck

User

Posted 27 Oct 2016 at 01:12

Thanks so much to all who have replied. yes it does help even just knowing there are people here who know exactly what Iwe are going through helps us feel less alone. Your message is encouraging. I fam feeling more positive today and graham, well he is doing what he always does and is just getting on with life. I don't know all of the medication names yet but I am assuming all that you mention are chemo? Thanks for the good practical tips I will certainly be putting some of these into practice. I will keep posting on here to update and no doubt seek lots more advise.

I was thinking of contacting Macmillan; do you have to pay for the service, a friend of mine who's partner is very poorly at the moment with Pcn said she had contacted them but they said she was not eligible for help as she earned too much, she probably earns less than the average. I was surprised to hear this as all the ads lead you to believe that the service is free to all🤔

Edited by member 27 Oct 2016 at 01:19 | Reason: Not specified

User

Posted 27 Oct 2016 at 02:23

I have also lost a reply sometimes through hitting a wrong button or the text just disappears which is particularly annoying if it is a fairly long reply so to avoid this I type and save in open office and then paste to the Prostate Cancer reply box, then delete in open office if reply is likely to be long.

Barry

User

Posted 31 Oct 2016 at 15:01

Although everyone responds differently to the various treatments, our experience has been pretty good so far (given the entirely rubbish context!). Starting point in July was a PSA of 470, terminal diagnosis and cancer spread to spine and lymphs. My OH is now on HT and half way through 6 sessions of chemo. He's felt washed out and ill on some days, but most other days has carried on as normal. His appetite is still good and the sickness is kept pretty well under control. The treatments themselves are straightforward and not stressful. I'm able to go with him luckily but he could easily go on his own if I wasn't able to. Of course you will worry about him but things do seem to settle in to a routine quite quickly, and then don't feel so terrifying. We've been allocated a Macmillan nurse although we haven't yet needed her - that's part of the service here in Wales, don't know about England but you can ask directly via the Macmillan Cancer website. Key thing as others have mentioned is to get a good thermometer and keep a careful eye on the possibility of infections - and to phone the chemo team if you have any concerns.

Good luck.

Eleanor

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