Advice, feeling very lost

My husband had a prostate biospy last Thursday, he is a fit 59 year old, his PSA was 46 following a routine blood test. 

Following the procedure the Consultant called us both back in, it was a busy clinic and she apologised for rushing things through.

A small polyp on the bowel showed on the scan which she said she would refer for an Endoscopy.

She told us that the prostate in her opinion is definitely cancerous, she then showed us an MRI that shows a small white circle/mass on my husbands spine, her words were :

“My suspicion is that this Cancer has spread’ 

We both sat in disbelief, she ran through it again and we left shortly afterwards. 

Last night I had to take my husband to A & E due to acute lower back pain, no other symptoms. 

Treated with antibiotics and morphine on a drip, after 6 hours the A & E doctor who was superb, said I think it may be what I’m seeing in your MRI that is causing the backache. 

He assumed we already knew, not his fault. 

Somehow this is all back to front, we are both educated professionals but have been left in a complete daze, no formal diagnosis but both left feeling drained and frightened and confused by the last 72 hours. 

He has an appt for 2 Dec to see a general surgeon ? 

I have emailed the Consultant’s PA this afternoon to see if we can be seen any earlier….. 

Has anyone experienced similar please ? 

Thankyou 

  • Hi Perfect10, and welcome to the forum, i am so sorry to hear your husband has prostate cancer, and know what a awful emotional time this is for you both ,confusion at diagnosis is not uncommon, please remember the doctors you have seen are not oncologists, though I don't doubt they are very good doctors, experience has told me to wait for your oncologists diagnosis, I've had prostate cancer for nearly 3 years, and have had many scans and Xrays since, which have picked up lesions,  cysts and  polyps on my bowels, bladder and spine, non of which were cancer. I'm not saying the mass isn't cancer, just there are other possibilities, nobody wants cancer, but prostate cancer is one of the better ones to have,I  was in healthcare 15 years, 5 years in cancer, I retired 5 years ago, and the advances in treatment for prostate cancer are amazing. Best wishes to you both.

    Eddie 

  • Thankyou so much for taking the time to respond, that means a lot. 

    My Mum had Ovarian Cancer so I have been through the processes and understand exactly what you are saying, a Urologist isn’t an Oncologist. 

    We found the entire appointment very stressful,to be told that with no formal diagnosis, she had attempted to inform us by phone as well, which would have been worse, 

    Thankyou again, it has really helped.

  • I have just shown your message to my husband and it has lifted him, it will be whatever it is I guess but thankyou for the positivity and throwing a different light on our situation.

  • Hi Perfect10, you are welcome, this really is the hardest time with on any cancer journey, the testing, waiting for results and a diagnosis then treatment to start is so emotionally difficult, but once you have all the answers and treatment starts, it does get a little easier, can I suggest you find out who your cancer nurse specialist CNS, is, they will be allocated to you, you may not have one yet, but they will be your connection to your oncologist, and multi disciplinary team MDT, they are usually on your MDT, will know all about your treatment and care plan, and are so much easier to contact than your oncologist. Keep pushing for earlier appointments, if you can fill in for someone else cancelling, and can get to the hospital quickly, let them know this, has worked for me many times, and be strong and assertive, in a nice way, at meetings, it does make a difference, as does asking every question you can think of, record all meetings, ask for a copy of the minutes and any scans and make a note of time and date, and who you saw.

    Eddie