So in  5 days time I have the operation to remove the tumour - randomly known as Ian.
jacks77 omg that's crazy, i remember you going back repeatedly about the pain yadda yadda, so what do/can they do for the dvt?
There, the pants are back!
Deb09 and Jacmatholmad, nice to hear from you too. It's nice we are hopefully all moving on, and quietness on here reflects that, although sounds like you've both still had worries either personally or wider family.
So next steps for me. Yes this is the third or R2 as it's 2nd recurrence after big bad boy lennny got his 1st eviction. I'm back on the waiting game for letters of doom for a CT scan, then results and discussion at the MDT meeting will decide LJJ's eviction plan. Looks likely at this stage similar eviction to xmas. They are a little stuck with lack of tissue to work with in terms of margins, without hacking my chest to pieces, which understandably they would be reluctant to do unless absolutely necessary, but as i stated, how much longer can i go having lenny evicted in this way, can't keep doing it indefinitely, and old L doesn't seem to get the message that he's not wanted.
Have a good weekend all 
Lovely to hear from you all.
My heart goes out to you Jolly as I can imagine what you’re going through at the moment. It must be dreadful going through this rubbish for the third time. I understand why it must be getting difficult for them to keep doing surgical procedures on the same area. There isn’t much info about on your type of BC as it’s rare, and the fact that it’s invasive more so, I had a look to see if I could offer extra support. We are back on here giving support to you and for now it looks like the notifications are coming through again thankfully.
As to my situation, it’s been ongoing for months, way back to last July. At first they kept saying it was the RT but as time went by I said my arm was painful and I had restricted movement. I had a contrast CT in September but it was of my chest area and of course that came back clear. I then waited 3 months for physio because they say they didn’t get the referral letter even though I had been cc’d in on it and received mine. On my 3rd PT appointment I couldn’t let her continue so she suggested I go back to the BCN.
I saw a registrar who ordered an MRI of my brachial plexus 5 weeks ago, he said we can’t keep doing scans as if it was my fault so I actually bit back and said that nobody would keep putting themselves through this just for the fun of it. I went for the results and saw my original BC consultant, he was just a little matter of fact with me and said it’s all clear so I’m referring you to the pain clinic as we can’t find anything. I sat there and welled up because I absolutely knew something was wrong as it had progressed to 24/7 pain.
He looked at me and said ok let me just examine you again, he called in my RT consultant and they both nodded and said it could be a frozen shoulder but let’s be sure. So I had a contrast CT on my chest but also on my neck this time on Wednesday, I got a call Thursday and went in on Friday to be told that it was an extensive jugular and UEDVT and every single symptom I’ve had is text book, no s*** Sherlock, 9 months of complaining!!! It’s rare and serious so I’m on injections every night for the foreseeable future and they said there’s no quick fix because of the size. The cause is chemotherapy and the PICC line so yup it’s been getting bigger for a year and apparently it’s a known possible side effect.
Im in to see the consultant on the 30th to discuss the way forward and to get the results of my nuclear bone scan. Hand on heart I’m scared, they said if a bit breaks off and goes to the brain it’s a stroke or to the lungs it’s life changing or worse. I guess they have to be honest with you but I feel like I’ve got a ticking time bomb inside me. I’m just thankful that I persisted because at least it isn’t going to get any bigger now.
Debs I did chuckle at your rapid exit from your almost biopsy 
Apologies for the lengthy explanation ladies.
Love to you all Jackie xx
