Newly diagnosed - so lost and scared, please help

Hi WW. Thank you for taking the time to respond to my  post. The crying bit is so unpredictable! I find myself just like you, crying at random and in the middle of a conversation, tears streaming down my face. Yes, I will give myself time - I guess the feeling of our life spinning out of control has to settle and we desperately need the treatment to start now. As for support, I keep telling him that I will be with him through this, and whatever life brings. And that he is not alone and we have cancer together. And that we need to enjoy every day now! I love that you had an amazing holiday in Germany after the treatment and that you laughed again. Yes please for the laughing to come back!

Hi Stuart - hopefully if it escaped the HT can stop it in its tracks indeed, at least for a while. Or a localised RT aka sunbed in the immediate area? We will speak to the oncologist about that. Good luck getting fit again and thanks for the dietary advice before RT. I think I get the picture

Hello Shar, thank you for sharing your story with me. I hope all goes well for you and your husband. It’s so good he is responding to chemo well and doesn’t feel ill! We were also told by the urologist that they can’t cure, but can treat. I am still hoping that the oncologist will say something different, but if treating is what we have got available, then I see that there are many options and trials out there and that gives me hope. I am trying to take one hour at a time, a day is too long. Sometimes I crush, sometimes I think we will fight it with all we have got. This group has been an amazing support, but I will also check out Maggie’s and Macmillan’s support line, as you advised. Best wishes x

Thank you Steve for this point of view. That’s exactly what my husband is questioning. Why surgery if it is not curable and given side effects. I am also not clear why the urologist told us on the first visit that the surgery is not available to us, and then on the second that it actually is, with the same diagnosis. Will investigate that as well as pros and cons with the oncologist. 

Yes, that is odd why he would change his advice like that but then again I think he gave u an option, yes or no to the surgery.

U could get another opinion but probably ask him again first.

Steve 

Hello L. Oh my! I read your story which sounds like a twin to ours (at least with the diagnosis), and also read the info about abiraterone and the Stampede trial. Thanks so much, we will ask about this drug and whether it is suitable for my husband. May the success of your partner’s treatment continue. Also thank you for the stats, he is indeed on the cusp with the PSA and the panel is hopefully erring on the side of caution, but the risk is clearly there. You also answered one of my other questions that I didn’t post, how long before the “seeds” from the mothership germinate, hopefully it will take a while with the HT, exercise, and the right nutrition and supplements. 

About telling the children, we were already gearing to tell them soon because we didn’t want to hide things and obviously the boys can see for themselves, but you are right we should be stable and with a clear path first before we start sharing the news. So that’s on hold now.

Best wishes to you and your husband too x

Paulina

Hello GR1. Good idea about the dietitian - for now we cut out dairy and red meat, and will of course keep low fibre etc diet as he goes through RT. I still want to know how otherwise I can help support his immune system - vit. D and calcium for bone health, turmeric for its inflammatory properties, clearly lots of fruit and veg - so could definitely consult someone specialising in cancer nutrition, thank you for the suggestion. Regarding treatments available to my husband, the panel decided on a multimodality approach due to the risk of spread, hence additional treatments offered after surgery, which is a question mark in itself. We will see, still early days on the rollercoaster here… All the best to you and your husband x

Hello Malnik. Thank you for sharing your journey with me. I get that once we are ready, honesty is key when telling the news about cancer to the kids. Of course we would say that the cancer is treatable and doctors will do their utmost - hopefully the boys will take the news as well as your children did. I wish you all the best on your journey and it was good to read that you got your life back after 9 months. I am hoping for the same, still being able to enjoy life and put the cancer story aside even if we know it may be lurking back at some stage. 

Hi Paulina

Just to be clear, the dietary advice is for whilst he is having the RT, and for a short time after, and not before. 

I picked up from one of your other posts, your OH doesn't like exercise. If he goes down the HT/RT route, the most debilitating time is when he is on the sunbed, as he will suffer a double whammy of fatigue - both the HT and RT will cause tiredness at the same time. When I got home all I wanted to do was crash on the sofa. It took some willpower to get me moving.

One thing that I havnt seen mentioned much,  is anemia. 2 years post HT, I suddenly became even more fatigued than when on HT. A blood test confirmed amnemia, although the GP was surprised I could feel it as the readings weren't too bad. A month of iron tablets seem to have sorted it. The logic, I believe, is the the RT hits the production of blood cells in the large bones.

Regards

Stuart

Hi again , I have an add on that’s quite important with the Abiraterone. If you are private it is readily available. If you are NHS you will need to push for it (in England and Wales) because NHS is using Enzalutamide, which is also an excellent drug but slightly different. Previously Abiraterone was around £2.5k a month to have but since last October it has gone “generic” and is now £60 a month making it more accessible as a first line treatment . NHS seem slow on the uptake even though it has been passed for use,  maybe because of supply and contracts with drug company’s or just that Enzalutamide is the usual drug that also works well. The important difference for long term users is that if your body starts to reject Abiraterone (become Hormone/castrate resistant) you can move over to Enzalutamide which should work well, but you can’t go Enzalutamide to Abiraterone for some reason (I must look that up ) I guess overall there’s not a lot of difference between both drugs, but in my mind having this option to switch over for possible extended time with use is a plus point. 
I hope you are feeling a bit more positive now, you’ve had some amazing feedback from the forum and hopefully you can see a future. 
x