New to the forum

Hi There 

I’m not sure I’m the best qualified to advise or even discuss but to me the fact that the docs are saying it’s MO means it’s still curative? I’m not sure they would lie to you, infact I really don’t think they would? 

I have read these forums back to back and I have heard people saying that whilst on treatment it’s gruelling for some so I expect this is what is affecting you husband? 

My husband has been diagnosed Gleeson 9 recently and we are awaiting his surgery  in a couple of weeks. It’s all such a shock and a learning curve. 

There are People on here who will come and give advice and they are so knowledgeable that I’m sure they will help you navigate and give you hope, but as no one had answered I just wanted to give you a reply. 

I hope you get some comfort from the replies to come, I know joining this group has helped me immensely. 

Take care of yourself as a partner it affects us so much too 

M 

 Ladyvaako 

Hi Catherine and welcome to the forum. I am another Gleason 9 and also living in Highlands of Scotland. I was diagnosed in 2018 as T3A N0 M0 with a PSA of 15 by the time treatment started in October that year. I had three years of Prostap and 20 sessions of radiotherapy in early 2019. We were living on an island at that time so my radiotherapy treatment was done at the Beatson in Glasgow. I am currently being monitored by the Urology department at Raigmore hospital with six monthly PSA tests although I have never had a face-to-face appointment with anyone there as we moved here during the first week of the first lockdown in 2020!

Next week it will be three years since my last hormone injection (coincidentally it's also our emerald wedding anniversary) and my PSA has been stable at 0.2 for the last two years so I'm currently in remission.

Unfortunately fatigue is a frequent side effect of the hormone treatment and strangely exercise is the best way to combat it. Is your husband also having radiotherapy?

There is a Maggie's Centre at Raigmore and they used to hold a monthly men's group in the centre where you could discuss anything and everything about your treatment, but I believe that is now only online.

I hope you find an answer.

Hello Ladyvaako .

A warm welcome from another wife. I have no personal knowledge of Abiraterone but have tagged in BW whose husband is on it and might be able to give you some pointers. I know that it is important to be monitored closely for this particular drug because of the risk of heart problems amongst other things. Shortness of breath does seem to be a side effect in about 20% of men and fatigue is a common side effect from most of the injection/implant hormone therapies with exercise being the best way to try and help.

Having a T3b Gleason 9 would normally indicate that a multi modal approach would be taken to control and kill the cancer. HT plus radiotherapy or a radical prostatectomy might be the options so has additional treatment been discussed?  If you are not satisfied with the information you are being given you could always ask for a second opinion.

Keep rambling and asking questions, we are here as a sounding board and will try and help if we can.

hope everything goes well with your husbands operation.

unfortunately they will not operate on my hubby as it has spread outside the prostrate into the seminal vessels and the oncologist has said it would spread it microscopicly.

he's having radiotherapy at Aberdeen royal at some point.

we have two dogs and he walks miles with them, but he's struggling badly, no strength and can't catch his breath after any type of exercise, he's had a chest xray and nothing came of it.

The oncologist at Aberdeen told us that my husbands prostrate cancer level is what a gentleman in elderly age would usually be dealing with and because he's younger that he'll just have to take life at a slower pace !?!?

the pelvic and kidney pain has been there for several months before diagnosis and the hospital have said its maybe not related, but have just left it at that.

what If the cancer had spread in between the time the scans etc that were originally taken in September.

do the hospitals not check with scans, etc, several months later to see if it has spread or started to shrink ?

his health has massively deteriorated since the first rectal exam in August.

I've been with him 31 years and never seen him so unwell, constant cough and in pain to the point of being doubled over at points.

xx

Hi Catherine,

Im fed up too with all the speel. I know exactly how you are feeling. I never really feel that we are getting the full story sometimes, and I’ve come to the conclusion that it’s because the level of T3B Is on the cusp of curable or treatable. I think it could tip either way.and they just can’t call it with certainty sometimes. My husband was having curative treatment, but is now not curable. I think there’s a very thin line between the two. He is also on Abiraterone, it’s working really well at keeping the PSA low. His main problem is fatigue. Exercise helps, but he sleeps a lot more now. Our consultant said the fatigue was caused by “Zoladex” implant that he has along side. I think Abiraterone is also to blame. What about the steroids? The levels can affect tiredness if too low.You can read my bio for his journey so far. But remember everyone’s journey is slightly different. My partner also has an aggressive “5” in his Gleason scores and his PSA was 115 at diagnosis. Over 100 tends to indicate metastatic spread, Are you having Chemo or Radiotherapy? 

* I’ve just read that he is having RT.and I’ve just seen your reply to Seamus. And edited my reply. I do believe there is a slight possibility of cure at T3b, especially if everything is thrown at it and you husbands PSA is reasonably low so don’t give up hope. Is he taking any supplements for his bone health? -Calcium and vit D are recommended and even though he walks a lot getting into the gym and doing some weight bearing exercises etc are supposed to be good.  

Best wishes L

Thank you for your reply xxx

Hi CatherineLadyvaako , I have no experience of Abiraterone but am T3bN1.  We are all different and what is good for one person may not work for the next, so to some extent we each have to pick and mix from the options available.  In my experience I know if I overdo things I will pay for it.  I try and keep healthy, good diet and exercise (Pilates, tennis and walking) but I now know not to push myself beyond a certain point.  Examples are when walking, hills have become much more challenging and sometimes I just get to a point where I stop and recover 1-3 minutes generally is enough.  I can then go on again, but might need another stop. If I don’t stop and try and force on, I won’t go as far and will probably feel worse the next day.  I found stopping a challenge at first as my initial response is to push through but I now know that just isn’t right for me.  It is all a balance between physical and mental.  Perhaps your OH is just pushing that bit too hard at the wrong time?

in terms of other pains, personally I would want to try and explore what is going on, but if the oncologists have ruled out cancer related, then they are likely to be right.

As you have probably read on this site before, having a positive attitude will be a massive help in his treatment.  Best wishes, David

Hi again Catherine. 
what happens next : Have a discussion about the level of RT . - everything needs to be thrown at this and it’s a good idea to ask about are lymph nodes and lower ribs included or anywhere else that they may suspect spread . If they are saying metastatic, well pre-empt where it will be and get ready to fight it back. (Or even kill it off!) don’t just settle for “palliative care at this point, go all out for the “cure” your husband is young and fit and he can take it. Then after that the PSA will start to drop further. RT will damage the cancer cells and they won’t be able to divide and double, they should eventually die off and be replaced . Then his PSA will level out . Can take up to 18 months in some cases. My partner reached it at 6 months . This is called the “Nadir” it is s a new starting point for diagnosing where you are. If it starts to rise from that point you will have the scans to see if there are any mets kicking off and they will address it with either target RT or a blanket approach of Chemo. Also the Abiraterone will hold it back. Some people get to come off Abiraterone after roughly 18 months or so. It’s then possible to see with more clarity how his cancer is doing. 
It’s a journey not only for him but for you also and it can be really hard sometimes. Make sure you look after yourself as well. 
Lorraine x 

Thank you Lorraine, that's all really helpful 

xx