Hi Mrs T,

I am so sorry to hear the hospital gave you the wrong information and also that you had problems understanding the accent of your oncologist. Lets just look at what the other urologist said in another way and stand it on it's head so to speak. Lets forget the worst case scenario and instead look at the best case scenario. Bearing in mind that I am not a medical person, just someone who has done a lot of research about prostate cancer, It is very possible that the hormone therapy which is also used for breast cancer, coupled with the radiotherapy will hold the cancer at bay for many years. Also there are a lot of new drugs in the pipeline for all types of cancer so please, don't feel so bad. I know you will feel it is easy for me to say this to you especially as I have always had a positive attitude, and I do know how scared you must both feel but when consultants give estimates out, I wish they would also give the best case scenario too just to balance things up. I think what you are feeling has been made worse by the fact you were given wrong information. You also need to remember that it is only an estimate.

Anytime you need to talk please dont hesitate to come back on here.

Sending best wishes and kind thoughts to you both, Brian. 

Hi Brian.  Thank you for your reply.  Mr T goes for his CT scan tomorrow to see how far it has spread in the lymph nodes then we have an appointment next Monday to find out the results.  I feel that every time we go to the hospital, we get more bad news and am terrified of each and every appointment.  My husband spoke to the consultant about intermittent hormone therapy and he may be eligible to be considered for the 'patch' clinincal trial.   I am still terrified, I can't sleep, I try to carry on as normal but ..... it's not normal, I feel this shouldn't be happening, why us?  I know that everyone must say that.    Thank you so much for listening, it means so much. x

Hi Mrs T,

I was diagnosed with Prostate cancer in 2012 , fortunately It was caught early and I elected to have the prostate removed .

The moment you are informed you have cancer is devastating you come out of the room in total shock but one thing helped me tremendously and that was my dear wife holding on to my arm, I'm sure Mr T went through the same feeling and needed the same support, the same tower of strength and that what you need to be for you dear husband  and I'm sure you are and will continue to be .

I feel very fortunate that mine was caught very early, back in December last year I buried my dear Brother who was not so lucky, his prostate cancer was not discovered early and after many years of fighting the cancer finally lost the fight .

Be strong my dear Lady and be there for you husband, cherish the good times you have had together and take every day as it comes, I take great comfort in being with my Grandchildren as much has i can becasue you never know whats round the corner !.

Mrs T,

I share your frustration about poor communication from medics, who sometimes assume you understand all the jargon they use. If your husband has an M0 status, technically what he was initially told was partly true ... the cancer hasn't spread outside the immediate area. If it had spread the staging would be M1. It is very bad practice to give news like this over the phone, because it can lead to exactly this sort of confusion. There have been other cases where someone has been initially told their MRI scans looked clear, only for the more detailed radiologists report to contradict this a few days later. Again, best practice is to say nothing until the detailed report has been received.

I'm not a medic but when I was first diagnosed with cancer last September both the oncologist and my GP told me not to pay too much notice to any estimates of time scales as these are based on averages. More easily said than done when you've just been told by them that worst case you have just two months to live and that average life expectancy is ten months from diagnosis. It is worth remembering that these averages include people who weren't diagnosed until it was too late, people who refused treatment, people who were too weak for surgery or chemo as they were already very ill with other conditions and very old people who were already dying (sorry to be so blunt). Statistics also tend to be out of date and reflect the situation several years ago before new drugs and other treatments were available.

I hope this helps a little. Your husband's situation is very serious, but perhaps not as bleak as it has been painted so far.

Best wishes and I hope Monday's scan went OK

Dave

I know exactly how you feel my husband was diagnosed on my birthday in Feb. They did biopsies on that day we were totally in the dark thinking we had come for results of his MRI. They told us that it had spread to his ribs and hips but not gone to lymph nodes and they would start him on hormone therapy but we would have to come back for the biopsy results. We went back this week to be told that he has an aggressive strain so now on the 21st April we are going to see a Cancer Consultant to discuss other treatment which could be Radio Therapy or a new drug trial etcetc. They have said years so far but I can't say this has made me believe them. I find myself every day thinking about it all I can't say anything to him as I don't want to rock the boat so to speak.   I really feel your pain ((((((((((hugs)))))))))