Prostate Cancer - wrong information given. Finding it hard to cope

Recently my husband was diagnosed with prostate cancer.  We were told by phone a couple of weeks ago that his cancer had not spread outside of the prostate gland and that his MRI and bone scans were clear. We went away on holiday relieved at the news.  Last Monday we saw a doctor at the hospital who was Bosnian.  We couldn't understand her accent.  She told us that the information we were give was incorrect.  The cancer has spread to his lymph nodes.  His bone scan was clear.  We wer told his staging is T3b, N1, M0.  Because we couldn't understand the doctor (who was the oncologist), yesterday, we saw a private consultant urologist who answered all our questions and was lovely.  However, he has put the fear of god into me by saying the worse case scenario is a life expectancy of 2-5 years.  I know he has said worse case but I can't get this comment out of my mind.  I cannot comprehend losing my husband ....... I am trying to be strong but keep breaking down.  My husband is going for a CT scan on Monday with results the Monday after to see how far in the lymph nodes it has spread.  He then starts 3 months hormone therapy, then 7.5 weeks radiotherapy, the 3 years hormone therapy (we were originally told after the radiotherapy it would only be 3 months hormone therapy).  I am feeling I just can't cope ...... I feel so weak.  Please help anyone - I don't know what to do.

Parents
  • 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

Reply
  • 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

Children
  • 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 !.