Hello,
My husband, aged 56, was diagnosed with advanced prostate cancer in April. His only symptoms at the time were a feeling of 'pressure' and the need to go to the loo several times a night.
His PSA test was over 400 and his Gleason score was 9. The cancer has spread to his bones and lymphs. Since beginning Prostap injections and taking Enzalutamide he has noticed blood in his urine pretty much every time he goes to the toilet. This was not a symptom which he had previously. This has been mentioned to the prostate cancer nurses and to his Oncology consultant who said that 'they would have to keep an eye on it'. With a gap of 3 months between appointments it certainly doesn't feel like anyone is keeping a close eye on anything!
One of his lymphs is blocked which we believe causes pain in his hip (enough to keep him awake at night). He is also now suffering from a dull pain and numbness in his leg. We have read that pressure on the spinal cord, relating to tumours, can cause issues with the legs. This is obviously really worrying.
As months had passed since diagnosis my husband requested a blood test to get an idea of how his PSA levels are doing since having started treatment. With every new pain and discomfort it is important to know whether or not the treatment is working - as weeks go by without further investigation it is easy to imagine that time is being lost. It took over 2 weeks for the form to arrive which would enable my husband to have the blood test. He has had no feedback from the Oncology department despite having written a letter to them (delivered by hand) expressing his concerns about his new symptoms and asking for an update following the blood test. Today he left a message with the consultant's secretary asking for the department to contact him. It's 4.30pm and no-one has been in touch.
We appreciate how busy the staff are. We also appreciate that a follow up appointment is booked for 2 week's time. However, when you are going through this and facing so much uncertainty it would be helpful to be given some sort of reassurances or simply have some contact so that you don't feel that you have been cast adrift. With ongoing worsening symptoms it's impossible not to imagine the worst.
I wondered if anyone else has experienced a similar scenario.
Thank you. x
Hi and welcome to the Online Community but so sorry to hear about your husbands diagnosis and the ongoing post treatment issues. I have been on my journey with a rare blood cancer for 22 years now and these issues are often there, even out with Covid times. You often have to get your pointy elbows into the system.
You may find talking with others who are walking the same type of cancer treatment support journey (my one is completely different) will help you navigate this difficult time.
The New to Community is like the Community Reception area and as there are many cancer types and experiences so likewise the Community has many support groups so can I recommend you start of by joining our supportive Prostate cancer group as this will be a good place to connect with folks who may be on the same cancer treatment pathway.
Navigating the community will depend on the device you are using.
To join a group just click on the green link above then scroll down and choose 'click to join' or 'join' on the page that opens.
You can then introduce yourself by putting up a post by clicking on ‘New Thread’ or ‘New here, say hello’ then hit the box with the X on the top right (phones).
You could just copy and paste the text from this your first post. You can also join in with existing ‘Discussions’ by clicking on 'reply'.
When it comes to the practical challenges of supporting someone you may benefit from talking with others caring for family and friends so do check out our Family and friends group where you will connect with others supporting family and friends
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, support, financial guidance or just a listening ear.
We also have Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.
All the very best ((hugs))
