Hi Everyone, Unfortunately I am joining the group that nobody wants to belong to. I was diagnosed with Stage IIIb IDC ER8, PR0, HER neg in March this year and underwent lumpectomy and wide local excision in May and re-excision in June. 5/13 lymph nodes were cancerous. I started EC x3 in August to be followed by Docetaxel x3 not without problems. Cycle 1 saw a PICC line infection and clots so PICC line removed and Hickman inserted. Cycle 2 saw my BP plummet so I was forever passing out and became dehydrated. Cycle 3 I suffered neutropenic sepsis and was in hospital for 10 days, 2 days after cycle 4 I had a headache that wouldn’t go with painkillers and then started vomiting. After a further trip to A&E and an MRI scan I have was told last week that cancer has metastised to my brain and I have several large tumours both sides. I saw the oncologist on Monday and she is convinced that this spread before I had lumpectomy.
Everything has happened very quickly and I am still trying to process this information. I am having Hickman line removed tomorrow, all further chemo has now stopped on my breast and I am undergoing whole brain radiotherapy next week. I am managing pain with dexamethasone, morphine and have started Letrozole
Is there anyone on the forum in a similar situation that can provide some much needed support and encouragement on how to proceed from here. The hospital has been great and is putting palliative support in place but it would be great if I could share experiences and have some expectations on what to expect moving forward.
Good luck to everyone on the same journey
I’ll be thinking of you i go Monday to see consultant I never knew they have to make you a mask so maybe they will start that on me Monday did it take long for them to make the mask ? X
Good morning
I don’t have the words but your in my thoughts today . I hope it goes as good as can be x
Good morning to you too.
thank you for your message. I will also be thinking of you for when you get your plan today.
Do you want me to let you know what it’s like? X
Good Morning,
How did your apt go? Have you got your treatment plan now?
so the treatment itself was pretty quick and simple, once I was finally seen, there’s staff shortages, and I’ve been taking steroids in order to have the radiation, which has made me a little cranky so wasn’t a great wait. however, the staff were so lovely and I knew it wasn’t their fault.
But I will say going to sleep that night was crazy. So many weird colours, shapes and even scenes going through my mind. But I’m ok this morning, but will see how I am come Friday/sat.
xx
Hello
Yes got treatment plan I am having 5 days I go Thursday for the mask fitting and still waitting on start date for the WBR but said it should be with in the next 2 weeks.
I found the app very overwhelming.
Back to you … I can identify it must of been hard waiting around especially when full of anxiety thanks for sharing so was it a bit like hullcinations ? my thoughts are with you x
So glad you’ve got your apts in place. My treatment started week after mask so hopefully you’ll start next week and get it all out the way as soon as possible.
I guess it was a little bit hallucinating but once I opened my eyes it all went away. Have you got your steroids too yet? I have to take 2 4mg ones a day from 2 days before and then all week.
and yes, the staff are amazing considering what they have to work with, low pay, long hours and staff shortages. Hopefully it will change for the better.
please do keep me posted how you get on xx
I’ll keep you posted x I pick up the steroids on Thursday when I go for the mask fitting she said start them on the day I start the radiotherapy but maybe that’s because I have been on the steroids for the last 5 days as my right leg is losing some sensations have you had any effects from the cancer being in the brain x
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