Well 2017 has been an unlucky year for me having been diagnosed with PD at the end of May I was diagnosed with breast cancer at the end of November. surgery is done and awaiting chemo but I'm concerned about the fact that my PD is taking a backseat big time. My cancer consultant is amazing but have heard absolutely nothing from my Parkinson's nurse (who I have still not met) or the consultant, and I know that they have been copied in on every letter from the cancer consultant as sh is concerned about the effects on my mobility long term.
Just wondering if by any chance anyone on here has been through a similar experience - in particular how chemo has affected the Parkinson symtoms?
What a double whammy - both in the same year! I can't supply any helpful advice or ideas in afraid, just wanted to offer heartfelt sympathy.
It's really shocking you haven't heard back from either neurologist or Parkinson's nurse. I wonder if any advisor at Parkinson's uk could help - either with advice or put you in touch with a relevant person. Maybe breast cancer charity people have a few ideas?
Thanks for the reply (its much appreciated)- I am hoping 2018 will be better once chemo is out of the way. I've kind of given up trying to get support from the Parkinson;s nurse now - not responding at all to the breast cancer consultant says it all, so will just have to live with the PD symptoms for now. The support for the cancer is outstanding (I guess that's due to funding) but the breast care teams obviously don't come across PD very often so I thought I'd see if anyone had been through chemo on here but it seems not - was worth a try though.
I'm really sorry to hear about your diagnosis; it's definitely a double whammy indeed.
It's unfortunate that you haven't had much luck with your Parkinson's nurse so far, have you tried calling our helpline? If not, please give them a cal today and they'll arrange for a specialist Parkinson's nurse to contact you within 24 hours. Our helpline number is 0808 800 0303 and they'll be happy to discuss anything that concerns you.
Just echoing what Daffy has said, I truly hope 2018 will be a better year for you.
When do you start your chemo? Three of my friends (in two different counties) have had breast cancer and been through chemo. They said that while chemo wasn't very pleasant the care was fantastic and had nothing but praise for the staff. One was 13 years ago, another 8 or 9 years ago and the last about 3 years ago.
If you can face it I think it would be helpful for you to contact a parkinsons nurse through parkinsons uk as Reah suggests above. Unfortunately you seem to have drawn the short straw there,usually they are brilliant.
Hi Ginny - sorry to hear your news, it can be so worrying when something is found, I had the same thing happen a number of years back when a lump was found, but thankfully it turned out to be a blocked milk duct, but the things that come to mind and the worry and the waiting is the worst thing to go through.
My thoughts are with you - Sheila
Hi Eccles - There used to be someone that used to post on this forum who had PD and went through what you are going through, she was a lovely lady and only wish she was still posting to be able to chat with you and perhaps give advice.
Thanks for all of your replies - my local support worker has been in contact and given me the contact details for the local nurse so I have left a message with her - hopefully she will have some advice.
Reah and Hattie - thanks for the advice - the breast care team are all absolutely amazing I know I am in good hands. I was supposed to see Oncology about starting chemo last week but the team have decided they want to do one final test to see how effective the chemo will be because of the Parkinson's they are just being extra cautious.
Ginny - sorry to hear your news have you had the biopsy's done and have you a date for your operation yet? I had to have a mastectomy with reconstruction (although the breast surgeon was reluctant to do the reconstruction because of the PD - I couldn't face waking up flat - I know its daft but it was important to me). Unfortunately they found it had spread to one of the lymph nodes when they operated so chemo is recommended.
Sheila thanks for replying and your thoughts - its a shame she isn't still on here its not knowing what's coming that is the worst - the actual treatment although unpleasant is doable because I has to be done if you know what I mean.
