Hi no, unfortunately it is another waiting game, I'm afraid. Hoping to have appt by end of next week. Will keep you posted, just feels like a whole knew leaning and research drive coming on as both other cancers were breast.
thanks for reading
i was thinking of you yesterday. Sorry to hear your news but as you say, it could have been worse and you and your new team now know what you are dealing with...
i am not in similar curcumstances so have no info or knowledge to share with you, but I just wanted to say I was thinking of you.
hope you keep posting and let us know how things are. Do you know when the appointment with the new team will be?
Hi sorry for the late update but had to share!
shocked totally new primary tumor in my neck. Totally unrelated to BC.
no spine cancer, but didn't touch too much on the T1 front and back from CT scan
Trying to invade lung and across Trachea, but not in due to scar tissue thankfully
So, after 19 days I am being referred to Oxford to a new team (no more breast team) to hopefully hear what there is to hear, stages, grades and pray for a chemo to zap it.
So I guess now could have been much worse, however I am still so scared as out of my comfort zone.
Is there anyone in similar circumstances, that could help please
Thanks for reading
Hi Tina so sorry that you are so worried and scared. There will be a treatment plan for you. There are quite a lot of drugs out there. My mets are inoperable and I have had them for 3.5 years so far. When you first find out it takes over but it becomes less so in time and when you start treatment. Look into all your options not just what the onc says as well. I get the impression they seem to stick to the chemo route but there are other procedures. I will be researching some of them in the coming weeks and will post on here if I find anything. Be easy on yourself. We are all in this together. Love and best wishes xx
Really have not managed to focus on questions for Onc today. Trying not to "freak out" before I get there!
I'm now thinking just go, listen, then try to take it in over the next few days with my family, then put the questions together. One thing I do know, is that I want a full report of what's been found, where, and if it can be treated / controlled somehow. Seem to be scared of triple negatives (maybe I am delving a bit far to soon)
Anyhow, I will try to remember what I am told, and am sure will be back with questions later
Thanks for reading
Marie the notebook sounds like a plan. I am finding that I have to jot everything down! There does not seem to be a filter anymore!
Thank you all for your kind msg's off support, they really are helping. Started to feel like I can get myself at least into the consulting room! Now!
praying there is a treatment plan for me, baby granddaughter due in four weeks!
thanks for reading
Hi Tina. I second everything that Marie and Marierose have said..
Also I wouldn't worry too much about a later appointment. Don't know which hospital you're going to but During my diagnosis period I had late appointments, sometimes at 1800hrs. I am pretty sure that they will have had a good look at your results, tests etc and that they will have discussed what the best plan for you is.
Let us know how things go.......
It is tricky, every meeting after a scan is a bit scary , but it does get more manageable . Eveyone understands your fears , we have all been there. I take a notebook with me. At the front I write my questions, so I won't forget them , at the back I keep inspirational quotes . While I'm waiting I find reading them helps me.
Hugs and positive vibes being sent to you Marie xxx
Oh thank you Marirose, your words have helped me.
i do feel a bit calmer, having never been this side of the forum (for want of better words) I feel that we try to think of questions, treatment start dates, how, where, why. Then possible more tests, who knows??.
I just want this trip to begin. I don't even know if I understand my own statuses anymore!!!
Thanks for reading,
Try not to worry I know it is hard not to but your once will have a treatment plan for you. As far as tumours being inoperable there are many ladies on here like myself who have not had surgery because to operate can cause more trouble. I now have 8 different mets as well as skin mets. I try not to worry too much about it because I know the onc's can give me different treatments to keep me going for longer. At the moment I am feeling quite well.
I know how you feel but you will find a lot of long lifers on here I have spent 18 years since first dx for primary and 3 years with secondary primary.
I do hope you can settle down and send you lots of love and best wishes for tomorrow xxx
So as the day looms closer, although how we got to this day is beyond me, it is in fact tomorrow at 16:40.
We go to discus the secondary and its potential spread to spine. Found via CT scan on 30th December left neck, recorrunce, branching down T1, underarm, top of lung, and trachea, although that bit was a bit of a blur. Seemed to remember no liver mets. What I do remember was inoperable!!
So (again) sorry, there will be so many so's and sorry's I just know it!
I'm just plain SCARED! What if there is NO treatment plan! What if I am worst case senerio? I have sat trying to go through every senerio that my unlimited SBC knowledge will allow me to go or research to! Also (nearly a so) my appt is very late so I suppose another appt will be scheduled to discus further if an option is available, or am I just rambling now?
thanks for reading