losing it slowly? Diagnosed with paget's disease of nipple

Hi I'm Ken, I'm 61 years of age and have been diagnosed with Paget's disease of the nipple. That was in February 2020. I had an appointment in April to start the ball rolling. Covid put an end to that and my appointment was cancelled. The ulcer is getting larger I can feel nodes getting painful and my ankles and feet swell if I sit for a long time.
I also suffer from PTSD and mental health problems and I am Disabled due to knee accident.
It is the end of June and have not seen anyone. I had worked myself up to the appointment in April, now I just feel left on the shelf and worried sick. Ah well .......

 

  • Hi Ken,

    How awful for you.

    I get the impression that many parts of the country have started to increase their non-Covid services now.

    Have you let your GP know that your symptoms are worsening? They may be able to do something to speed up your treatment.

  • Hi Roger,

     

    Thanks for the support. I did contact my doctor in April and she said that there's not much they can do as I live in North Wales. I know my real problem now, knowing it is getting worse, is admitting to myself that it is and going through the process again. The worst of it is my mental health. Self-medicating on alcohol is blindly wrong but. I can sleep, which also includes masses of sleeping tablets etc... Coming on here for me is a start

     

    Thank you

     

    Ken

  • That sounds terrible!

    But April is a long time ago now. Maybe it's time to contact your GP again, to report on your worsened symptoms. Maybe also mention that you're having difficulties coping, since that can sometimes open up additional resources.

    This may sound weird, but I tend to photograph my symptoms next to a ruler. That way, I can say things over the phone to my GP such as "This lump has grown 5mm since last month".

     

    Roger.

  • Hi Ken!

     

    Well done for coming on here. Hang in there! We are almost at the end of this bumpy road. I agree with above, certainly push with your doctor about worsened symptoms etc. Your health is the upmost important thing you will have...take care of it. I know it's easier said than done but try lay off the booze, get some fresh air on a nice walk or find something you love doing to pass the time. Maybe call some people too? Try and keep a routine, not long now. Keep us posted! 

     

     

  • Hiya,

     

    The booze comes from PTSD and the armed forces culture.  I stop for a few weeks and feel great but relapse. I used to run 10k every day then I smashed my knee really badly 5 years ago. I have progressive Osteoarthritis in my left knee joint now so hence the Motability car..... So walking??? Why not, if it hurts stop! So that's what I'm going to do today

     

    My view on having cancer comes from the 9 years looking after Mum with Colon cancer. I went to every scan, chemo, oncology appointment and emersed myself in the science. we even looked after the fish in the reception of Bodelwydden Cancer unit reception. Bought bird feeders for the Chemo room Etc. Mum lost her battle in 2013...

     

    Last year I completed a "Stand-up" comedy course and went on to perform. One of the guy's on the course was considered, terminally ill with cancer, he was 29 and is now 30.  Of his 3 inoperable tumours, today he is left with only a small one, his therapy and state of mind I believe have removed the other 2. He is an inspiration... Walking on stage and introducing himself a Jonny Savile (His real name!), from Leeds, home of Jimmy Savile, yes that one, it gets a laugh, but his routine was about his cancer, now I'm thinking of nicking his jokes. at first, audience reaction is quite OMG, but the way he put it together was brilliant. At the end of his set, not one person felt sorry for him and embraced the way is fighting his situation... I say he used to to do stand-up, that is because he is back as a professional MMA fighter...

     

    I've been down many dark roads during my time in the forces, yes it addles your brain from 12 weeks dived on a submarine in the early years, to conflict resolution around the world. Yes, I've seen death close up, been blown up, but nothing prepares yourself for being told you have cancer.

     

    Paget's disease is so sneaky, A year ago a doctor mate of mine said "get that checked out it might Paget's.... Nah.... I'll be fine, it's just a wart... Then it erupts into an ulcer, that goes away. Then for no reason it comes back with a vengeance. a chance meeting with Mum's oncologist said Yup, you have Paget's. The GP everyone says the same thing.. So fantastic, BUT DON'T MAKE THE SAME MISTAKE I MADE..... Look it up n the internet! Paget's is an external symptom of internal cancer!!! (WHich one is that then?)... Don't self diagnose!! The hard part about it is I can't find an alternative, just in case everyone got it wrong!!

     

    Well, I've typed for long enough. Maybe I'll keep going as Blog! I'm off out for that walk you guy's mentioned.. Ibruprofen, bring it on!!

     

    Ken

     

    Ken