Worried and scared

In my book that appointment was really not acceptable it makes my blood boil when some one with Cancer is treated poorly (it certainly is not how the adverts lead us to believe)

Trevor's first appointment with an oncologist to get his results from bone and MRI scans was nothing short of disgusting this was at Addenbrooks ( I am quite happy to name and shame). We were left in a seperate room for over 40 mins ( time ticks very slowly ) waiting for the oncologist. He was very distracted flipping through Trevor's notes like he had only just been handed them, he with a very deadpan face proceeded to tell us Yes it is PCa , incurable, bone scan was pretty shocking, PSA was extremely high, NO you are not eligible for trials and his exact words were there isn't much we can offer you, he then sat back and said "any questions" . We were just numb and obviously couldn't even think of any questions .

A very good friend of mine (who has herself now passed with cancer ) took up the baton and complained to the head of oncology at Addenbrooks, she told them that I was contemplating suicide ( ok over the top ) but do you no what it worked and the head of dept phoned the very next day and the oncologist himself also phoned to apologise. We have now moved to Peterborough and are very happy with our treatment and oncologist .

Sometimes they forget how there actions and words affect us , complain, complain , complain don't accept anything but the best this is your life they are dealing with.

BFN

Julie X

I understand that they can treat the suspect lymph nodes with radiotherapy if they are in the abdominal region.

I have forgotten the term that was used, but it was the lymph node system that runs around the prostate and upwards.

My OH was G7 N1 M0 and had the full 37 sessions including the lymphatic system in that area on an IMRT machine ( although I believe there is a more accurate and advanced machine now).

I think it's definately worth considering especially considering your young age.

Apologies that this is brief....I am on the hop.

ATB

Alison

Edited by member 13 Jun 2016 at 14:14  | Reason: Not specified

Yes Lyn , it would be part of a trial ,the radiologist said that it would not cure me to have the RT but may help .....but it's still in a trial so cannot confirm the benefits ......

At what point did you have some sperm frozen, and was this at the specialist’s suggestion or did you have to push for it? I think this will be very useful for other members in the future.

I did get married December 2016, 😍

When I seen the specialist he told me to straight away before starting hormone treatment . It was all very rushed as I banked three lots of sperm between Monday and Friday of the same week and on leaving the hospital took my first tablet , I took tablets first and them had the first hormone injection and a 10 day holiday and returned for chemo ....looking back it was a mad few weeks , find out you have cancer , put off having children to suddenly praying that the small amount you produce in that room is enough to make a baby .

I thought I've got cancer and I need to start treatment asap ,My then girlfriend now wife's mother had died of bile duct cancer within 6 weeks , so the speed at which we did everything was due to the fact I thought I was gonna die within weeks ......

We always thought we had three chances ,but someone clever had split the samples so it gave us " 6 " go's ," we just filled in the forms and prayed .

It was our second attempt when we stuck gold ...looking back the first attempt was just after chemo and our lives were still coming to terms with my diagnosis

I guess maybe my advice would be to take a few weeks in banking your sperm ,as once treatment starts there is no going back . I am so lucky it worked as if we had not we would have settled for not having a family and regretted our speediness .

What a great post. It sounds as though you have been very level headed in your approach to your diagnosis and treatment and I am so pleased at the way things have worked out for all three of you. Many congratulations.

Kevan 

I come back to this forum for advice and help ,

My PSA has risen from 11 in January to 20 in may , ,so a doubling time of 5 months I was quite shocked , I had my scan all repeated in March 2021 and nothing has changed since diagnosis in 2015 . ( I was diagnosed with lymph node involvement ) but it’s not showing on my scan but my PSA is rising . The oncologist has given me two choices . I’ve chosen casodex 50mg a day to take with my 12 weekly injection .

I’m having a liver test done next week to make sure all is ok

I’m feeling more tired and quite depressed about the whole thing .

Any advice I would be grateful

I have been going to the toilet 6/7 times a night and after rebooking my oncologist meeting to Tuesday , I was called Tuesday night to say my blood test have come back and all is not well .

After an ultrasound it showed that after going to the toilet my bladder is holding about a litre of water .my prostate is enlarged and obstructing my urine causing my kidney.