Frightened to ask

Hi J 

That's  good news on the PSA front, amazing,  HT can be very successful in reducing PSA.

Gleeson and TNM is certainly worth knowing if just for reference but it can give u clues as to the spread and aggressiveness , if u want to know.

If u  the get the stats and come back on here there r plenty who can offer u advice based on the figures.

Anyway sounds like he's doing ok.

Best wishes

Steve

Hi July14

I too was diagnosed with a similar PSA reading to that of your husband but was not informed of my Gleason numbers or TNM scores.

It is not unusual to not disclose these figures although the treatment plan will certainly take them into account and this is why it has proved so successful for your husband to date. You mustn't be afraid to ask questions of your husband's consultant regarding the readings.

The only question I have never asked is that of life expectancy/prognosis as I really don't wish to know. However, I am still going strong after 4 years of treatment and take every day as it is.

Regarding travel insurance, I found this difficult to obtain as the insurers are reluctant to provide cover whilst one is still having treatment. I did actually manage to obtain annual European cover through a subsidiary of SAGA, but you will need to ring them as it is almost impossible to apply on line. The premiums can be high but we have found that a holiday is essential for both mind a soul!

Very best wishes to you both for the future

Andy.

Thanks for that, Steve. We know it has spread to his bones and they are monitoring that.  I think I am worrying because I need to be the one to find out without causing him any alarm.

That is reassuring to know, Andy. Thank you. His treatment is for life so I think I will just have to bite the bullet and get on with finding insurance. Do you mind telling me whether you think I need to find out those numbers for the purpose of insurance? We were planning to visit our son in Australia but then Covid happened followed by cancer diagnosis and that was that!

Best wishes to you and yours,

Jo

PS in case  Steve, above, reads this, Best wishes to you too! 

(I'm not sure who can see what)

Jo

I can see Jo, thanks 

Probably stats not so relevant if u know that he has bone Mets.

Just some comfort, I've read that some people can live for years on hormone therapy plus I presume he is still on the trial.

All the best

Steve

Hi Jo

I know that insurance will be very high, as others have said it would be good to know his Gleason and what stage he is. What trial was he put on ? I well over five years ago went on the stampede trial, I have bone mets to and have been through the ringer at different stages. But having said that I’m still here fighting away and if I can do it anyone can. So it might be scary, but he will have years to come, ask about Alca D 3 from the doctors for his bones, they help strengthen them, takes time but to us every little helps, if he’s after a drink pomegranate is the best for people with PC.

stay safe

Joe

Hi July14

The questions the insurers ask may vary from one company to another. My insurers did not ask me for Gleason or TNM scores but it may be useful to have these figures at hand.

They were more interested as to whether whether it was advanced (which it is) what treatment I had been on and what treatment I was presently on. They also asked me what my prognosis was, but I told them I did not know and they did not pursue that question any further or indeed, ask for a medical or doctors' certificate.

I paid about £300 for annual European cover although I suspect that long haul insurance to somewhere like Australia, would be very much greater. My sister, who has fully recovered fully from cancer, was quoted about £800 with a very high excess to go to America (single trip). I have also been invited to my niece's wedding in Vermont but I somehow feel that the premium is likely to be astronomical due to the fact that I am still on treatment and will be for the rest of my life.

Some things in life are worth paying for and the opportunity of meeting up with close family in these difficult times is worth every penny!

Best wishes,

Andy

Thanks again, Steve.

Jo

Thanks for that, Joe. My husband is on the Stampede trial too. They have said that there are a few weak places in his bones but don't think he needs extra calcium yet, so we'll wait and see on that, eat healthily and try your tip of pomegranate juice! Good to know that you've been on the Stampede for that length of time. Stay well and thanks again.

Jo

You are so right, Andy. We really miss my son and his young family even though we are so glad to have zoom etc. Time is of the essence. thanks for sharing those details about the insurance.

Kindest regards,

Jo