How do I keep him positive?

Hi

Sorry that your in this situation but welcome 

Until all his results are in it’s impossible to know for sure, you can prepare for the worst and hope for the best. I was diagnosed in May this year and my PSA was 203 , but others have had a much higher number. I thought the same as your husband it must have spread everywhere, I’m glad to say I was wrong it didn’t reach my bones and was told it is curable. So my treatment journey started I have managed to keep my job and my colleagues have help me stay in touch with reality, hope this helps

all the best Tony

Hi

I personally don't believe you can 'know' , until all tests have been conducted. The consultant saying, 'it doesn't look good', doesn't necessarily mean the worst. Without the tests, there are no facts to base any decision on what the problem is.

I presume that he has had a PSA blood test - if so can you share? It's not definitive, but at least its something.

The initial diagnosis is daunting, but I was fortunate my partner ( who is an ex nurse) was with me, as I didn't hear anything after the c word. I went in expecting one thing and came out with something completely different. So maybe this is the case with him - he just shut off. With no one there to support him, things may have been missed or assumptions made.

Anyway let us know the test results and I'm sure someone will be able to help.

Regards

Stuart

Hi Tony

thanks so much for the reply and really pleased for you that your put look is a good one. Appreciate the support and advice and we will wait for the results and then make a plan!

thanks again

Beki x

Hi stuart

thanks so much for replying, I agree with u that he can’t ‘know’ but he is adamant so I will just have to keep him focussed on getting the facts from the results as u say. His psa was 77. I wasn’t with him for the appt as it was just a telephone call and we weren’t expecting that kind of news to b shared on the phone, I wish I would have been with him but I can’t change that now so everything from now on in I will b right by his side to take the pressure off and hear what he can’t. Thanks I will come back when we have results as this seems like something that can help us all using each other’s experience and support so again thanks and take care of yourself too 

Beki x

Hi Baki

Sorry missed the PSA result in your original post - I blame the Prostap!

77 is high but not massively- I have heard of Readings in the 100's and 1000's.

Covid has a lot of things to answer for - giving cancer diagnoses over the phone is appalling. I'm not sure how I would have coped with that. I was so blasé when I saw my consultant I nearly didn't take my partner in with me - changed my mind as I was walking across the waiting room. Thank goodness I did! The diagnosis hit me like a steam train. Wasn't expecting it at all as my symptoms were not the classic ones. Walked out of the hospital in a daze.

He should have been given the contact details for a Cancer Nurse Specialist, and they are really good to talk with, in my experience. The nurses on here are really good too.

Have they started him on hormones yet? If they have it will hold the cancer back until the tests have been completed.

The tests can take time so hang in there!

Regards

Stuart

Hello HMHL, as others have said it is a waiting game until all tests are done and results in. I had the most excrutiating pain in my right hip in June. I saw my G. P. (well the practice nurse as it the case in these covid times) after a telephone consultation and was referred to musculoskeletal service for a telephone assesment, 6 week waiting list. They gave me exercises via e mail which were impossible to do, too painful. In the meantime psa was continually high so was given mri scan which showed suspiscious areas, then biopsies. 2 weeks later in August given diagnosis and that it had spread outside prostate. Urologist said it could be cured but I would need a bone scan. Bone scan arranged next day and 10 dait for results. In meantime started bicalutamide x 1 month and prostap 2 weeks later. Referred to Oncologist who said bone scan showed 2 lesions on ileac bone so now can't be cured but treated. As mentioned in earlier post I was introduced to thr cancer care co-ordinator and she went through things as well as giving me the Macmiilan prostate cancer information books which have been very helpful. I have the co-ordinators direct number and she can liase with the Oncologist. She referred me for accupuncture for the hot flushes/sweats which hopefuly may help although have only had 2 sessions of 10. Now started radiotherapy x 6 weeks last Tuesday. Have also had radiotherapy to bone lesions following diagnosis. The whole thing is a lot to take in and is tiring as have a long trip for radiotherapy. As for me I have accepted my diagnosis but my wife hasn't as yet although is very supportive. Hope your husband gets some news soon and that it is positive for him and you. It is hard to say just get on with daily life but have found for me that is the way to go. Sending best wishes, Graham. 

Hi Stuart

hope you’re ok, thanks for the info I will ask about nurse specialist and also maybe speak to someone on here, he has no info and no one to call so I will try and convince him to do something while we wait. 
I just don’t know how to give him hope.

anyway I really appreciate your help and support and hope ur keeping well

beki x

Hi graham

thanks so much for sharing your story and info with me, hope you are doing as well as you can. I will find out about nurse specialist as he hasn’t had any offer of info or help and by the sounds of it it is very useful. It’s just I can’t get him to see there’s any hope so maybe someone else can until we have the full facts. 
thanks again and take care

beki x

hi beki 

as others have said its hard to know how to deal with this until u have all the facts .

what i do know is keeping him positive and the people around him positive will help no end .

there's always hope beki there's new breakthroughs in treatment all the time .

i'll give you a brief story about my situation .

i was diagnosed on the 7th january 2019 psa was 52 gleason score 5+4 so very aggressive and incurable !!.

had bone mets on my pelvis and rib had 5 lots of chemo and after another scan found i now had bone mets on my spine and chest too so chemo for me was a waste of time did more harm than good !!!.

it was then decided my only treatment was hormones i have injections every 12 weeks and i take abiraterone tablets everyday .

i was given 3/5 yrs to live so as u can see i'm almost up to my 3 yrs now , but i've never stopped working and still working now as a self employed gardener so quite a physical job which my oncologist thinks has helped me . 

having cancer and the treatment does impact ur life but only as much as u let it , u have to fight it or it will just take over and ur finnished imo .

so thats where the positivity helps .

hope this helps 

Hello I was diagnosed on 10th December 2020 I am out the other side now and hope I will go back to work in January, I was also convinced it had spread and until you know for definite it is hard to believe anything else. Good luck he will need a lot of support when the treatment starts.