For anyone wanting to chat, whatever the time - day or night

Hi Steph, on December 10th I had my 3rd MDT meeting in 5 weeks, I need a treatment change so that, along with 2 recent scans is what we discussed, as well as another MDT meeting in 6 weeks, my question is, on the 17th I got my copy of the meeting and absolutely nothing we talked/agreed about at the meeting was in the notes, so my latest diagnosis and change of treatment were a "surprise", to me. Three examples, at the meeting I was told I had mets to my ribs, I was signing for Apalutamide and my next meeting was to discuss another scan and how I'm getting on with the meds. In the notes, they say I have no mets to the ribs, but I do to my lower lumber region, never mentioned at the meeting, I was signing for Enzalutamide and my next MDT meeting will be to discuss if the cancer in my spine is related to my prostate. Happy new year.

Eddie 

Hi Eddie

Thank you for starting the conversation, although I'm sorry to hear about your experience. It can be difficult to cope with when your treatment options aren't clear.

I hope some other members will join in with the chat here soon 

In the meantime, you could also get in touch with the Macmillan Support Line to talk this through. They don't have access to your medical records but can discuss general details and offer you some emotional support.

We have some information about treatment consent and questions to ask your healthcare team which might be helpful for you to have a read through.

Take care Eddie and happy new year to you too.

Thank you Steph, for your reply, I'm used to my teams ambiguity and indecisiveness,  just not the the inaccuracies of our last meeting, I'm sure I will find your information helpful, so many thanks for that, and all the support you guys give.

Happy New year to you all.

Eddie 

hi Eddie 

its a constant battle making sure they have written the correct prognosis and treatment. my journey has been a very poor one with miss information and incorrect information on my medical records and it iis impossible to get it stricken off , I have had to send 2 email today because of the wrong information . 

Morning Simon VA, and thank you for replying, I too have prostate cancer "treatable ", T4 N2 M1b Gleason 10, for 32 months now,  though there has been some good relationships with a couple of my team, sadly I can't say it of them all, having co-morbidities, I attended 6 hospital departments, and everyone, except oncology are wonderful,  l get all my medical records sent to me, and the number of things "urology ", don't tell you in person or in general correspondence is  disgusting, Eddie 

WOW , I have t4 n1 mo Gleason 9 , im not playing cards with you lol,  and been told not curable but can be treated , it's in   everything down there . im in the same boat oncology has been very poor in communication , im so digusted in it ive asked to be refer to another authority . I don't know if you feel the same , because they can't cure us we are at the bottom of the pile, and seem to concentrate on patients they can cure. with us its just going through the motions , that how I feel . good  talking to someone that docent think the sun shines out of their bums lol

Hi Simon

Sometimes I think that stage 4 patients are 'written off' too....in my case, other health conditions that have developed for me since my cancer diagnosis are not being followed up as 'urgent', compared to other people without the cancer diagnosis. It feels like we really are at the bottom of the heap!

I've had a less than happy experience since my diagnosis, with totally inaccurate stuff being written in my notes, mis-diagnoses, poor after care...the list goes on. The only light at the end of my tunnel is that I have 2 very good GP's. They are very understanding and supportive. 

Oh well...i suppose dealing with all this makes us stronger....

Kate

Hi Puddock, I knew you were unhappy with your general care, but not that you thought your team doesn't care, my uro/oncology team have been woeful all too often, the lack of tests, scans, regular communication and cancelled appointments has been disheartening all too often, and the misinformation and recently the lies, have made me question their competence and attitude for the job they do, and I wonder why some of them do the job in the first place, but I prefer to believe a lack of staff,  resources and time are primarily the causes of my poor care. I'm not sure how I would be, if I thought they didn't care. PM you later My friend.

love Eddie xx

hi Kate 

sorry to here your having the same problems as me , but I am finding this is happening a lot , don't get me wrong they do a marvellous thing and are over stretched, but it is about getting the basic information right , reading what's in front of them listening to the patients and writing the correct information that the patient has given . so when we receive our letter and the information is right it makes us feel better that the care team are listening and there for us .keep fighting Kate .

Hello, how do you cope watching your loved one having to live with the side effects of radiotherapy/chemotherapy,  it's heartbreaking for me to see my husband of 33years changing in front of me, head and neck treatment changed his looks so much, having lost a lot of weight in a short time, he seems to be half the man he was only a few months ago, will I ever get 'my husband' back?