Husband’s Diagnosis

Hi Blue,

I totally understand how you feel. My husband was seen by GP in May and had a PSA of 252 so was referred urgently, that was on the Thursday the next day he got a phone call from the hospital, when he was at work, telling him he had cancer, the GP had emailed the referral and they called him right away the next day.  It was pretty distressing being told that over the phone but they did want things to move quickly and they did, by the Monday he was started on Bicalutamide and bone scans, biopsy and CT scans organised quickly. He is now on three monthly Prostap injections and Abiraterone tablets as with his PSA so high they were worried about spread and due to start four weeks of radiotherapy in November.  This group has been my main support and they are all so lovely and supportive. Once you get more details of his results and stats you will get lots of helpful information from the guys on here who are in treatment and have a wealth of knowledge. Lots of us wives are here too so welcome  to the group.  It’s such a shock and very stressful but with the support and knowledge in here I feel so much more positive.

Regards

Linda 

So sorry to hear of your husbands diagnosis, especially being given over the phone like that.

My husband got his diagnosis at a face to face appointment at the beginning of May and he had 2 more face to face appointments before he was finally allowed to make his decision in June. The first of those appointments was a complete waste of time as contrary to us expecting to make the decision about the treatment route we were told that my husband needed a ct scan and bone scan and this delay added to our anxiety  A couple of weeks had passed since diagnosis and we would have preferred that appointment to be over the phone as it may have been quicker.

My husband opted for the surgery and had this on 27th June and since then he's only had one face to face appointment with the urology nurse who removed his catheter. Since then all his appointments have been over the phone, apart from physio. I think phone appointments are becoming the norm now unless some sort of procedure is needed.

I know that receiving your husbands diagnosis over the phone is far from ideal, but being told that the scans will be within 2 weeks will save time and could be a positive.

Hi Blue,

Welcome to the club I’m afraid. My husband had a phone call with a nurse in February, three weeks after his biopsy in mid January this year. We (wrongly) assumed it must be good news as it never occurred to us that it would be left to a nurse to tell him over the phone that he has PC. It was a long and informative call but very hard to take in. She also told us that the next step would be a PET PSMA scan that checks the whole body on a cellular level for cancer. She said usually he would get that scan within 4 weeks but there was a bit of a backlog. It took many phone calls before he got to the top of the list and had the scan 9 stressful weeks later. Then 3 more stressful weeks waiting for the results of the scan (thankfully good news for that). So he finally had his face to face appointments with urology and oncology consultants in late June to start talking about possible treatment plans. Thankfully has been going well with his treatment since then.

So sadly be prepared for your patience to be stretched over the next few weeks or months but do keep in mind that most PC is slow growing and once you get to starting treatment the results are really good and improving all the time. 

Stay strong x

I am a retired registered nurse. A GP phoned from our practice. I answered the phone and she asked me if I wanted her to give me the MRI scan results! I said that she must speak to my husband. I will never forget her words to him and these are exactly what she said, 'Hello, I am Dr ...from the....Practice. I have your scan results here and unfortunately you do have cancer.'

Not the best way to break bad news!!!

We actually asked the prostate cancer nurse specialists to phone all the diagnostic results through to us as they came in. If we could survive that first call we could survive anything!

Hi Blue,

From other comments on here it appears that a lot of hospitals are now delivering results this way & it appears many need to learn from feedback & improve how this is handled.

I received my biopsy results over the phone from one of the specialist nurses as well, but had been told in advance by the hospital that it would be done that way.  We were advised that this would be on a specific day although no time was given. There was twice a delay in the results being available but each time we received a call just to let us know which at least kept us in the picture as to what was happening. The nurse was very professional with a calm approach & took her time running through the results, what they meant & what would happen next, & she kept checking that we were following everything.

As others have said, there is a lot of information given in that call & I think I missed a lot of it, however, knowing a call would be coming I was able to have my husband listening in to the call & although we were both a bit shocked, between us we picked up on most of the information.  

I think the old saying 'forewarned is forearmed' about receiving a call made it easier for us, & to be honest, looking back now I personally found it easier to hear the news in a call in a familiar setting (we were in the garden at the time) rather than in a sterile hospital environment.

I hope all goes well for you & your husband in his journey from this point onwards.

Kind regards

Brian

Hi Brian

Cracking post and so true. it's now all down to "time and money" and to me the delivery of a Cancer diagnosis should be made in person. It can be - it isn't always devastating news - and you have no idea how someone on the end of the telephone is going to take the news.

Thanks for posting and you two take care.

Best wishes - Brian.