Hi peppapot, I orginate from your neck of the woods, M’bro. My sister who still lives up there has a friend with BC and she had her rads at James Cook and there was some help available for travel, not sure if its a general thing, but worth asking.
Debs x
Hey just realised the geography thing-I grew up in Ferryhill,was born in Sedgefield and still have relatives in Newby.
Hey we are the sisterhood girls. In more ways than one eh?
I will ask about the help with travel Debs. I am thinking that now I know I’m t/neg, the rads are looking a sure thing.
It aint necessarily so…isnt that a song?? I have a couple of friends who are both trip neg too and they both had mastectomies and neither of them had rads, I only (only!) had WLE and I had rads, no idea how they work it all out, we turned ourselves in circles trying to work it out and still didnt get anywhere
think the treatment often depends on your unit policy and to some extent your consultants preference… and in mine cost! lol
I had wle and chemo and rads most units give taxotere chemo for triple neg nowadays and it is often effective.
i had grade 3 stage 1 and had wle and having epi-cmf plus rads for my TNBC… i was expecting Taxotere chemo but was told i wasnt getting it.
Mine was stage 3 but don’t know the grade.I had a very fast growing large tumor 50mm, I had to buy a lager bra cup size every week to accommodate it grrr!. I have never asked for the pathology report.(scaredy cat) I was told the op went very well and all the cancer was taken away. I would need backup treatment, which is my EC chemo. I have learned more on these boards LOL. Not always to my liking hehe!, but more prepared now for worst scenarios than at the start of this nightmare.
Will know whats next a week today when I see Oncologist.
To be honest I think once I get this last chemo over with I will start getting my life back a tad.
Lulu darl, what is epi-cmf? still dont know all the jargon yet.
Hope you are all well this morning ladies. Your knowledge has been invaluable. thank you, me lovelies. xxx
Hi Debs,
I was hoping that I would be given routine CT scans due to the lymph nodes under my collarbone being affected but the only follow ups are 6 monthly appointments and an annual mammogram. You are fortunate having 3 monthly check ups and and 6 monthly scans. I have never had a CT scan only an MRI and I wonder what the difference is? Also does anyone know if I paid privately to have a CT scan if anything showed up would I then be able to have treatment on the NHS?
I did not know about the REACT trial but I finished chemo in April so I guess I would not qualify.
pp
x
peppapot epi-cmf is the type of chemo im getting… its similar to yours the EC and the c are the same but i also get the M and the F.
Purpleprincess an MRI is generally a bit more accurate (dont think thats the right word but chemo brain cant think what the right word is) basically if you had a CT and something showed up on that they would do an MRI to find out more info… hope that makes sense LOL
and yes if you had a private scan you can still get treated on the nhs.
Lulu
Hi PP
I wasnt getting that follow up initially, but I asked to go and see Prof Smith at the Marsden for a second opinion. His suggestion was that I was seen on a 3 monthly basis and get regular scanning, he did say that I wasnt costing anyone anything with medication and he was sure they could afford a 10 minute follow up every 3 months. I came back and told my onc and thats what I got, it was a bonus when they threw in the ct scans as well! In my experience dont ask, dont get. Im not sure what the difference is between MRI and CT, I did ask BCN and she explained it, but I’ve forgotten what she said…Chemo brain!! x
Hi Debs,
Now let me make sure I have got this right - you asked for a second opinion about the frequency of check ups and scans and nothing else? How did you go about getting the second opinion- did you ask your onc to refer you to the Marsden? My last appointment with my onc was 10th Sept and the next one is not until end Feb next year.
pp
x
Thanks Lulu for the explanation re the scans, reasurring to know that I would still be able to get NHS treatment also.
pp
x
Re scans one uses radiation and one doesnt-not sure which is which.The one that doesnt is the more accurate and is also safer as its not a good idea to bombard your body with too much radiation especially if you have already had rads.Unfortunately the ‘better’ one[think its MRI]is also a lot more expensive.
hi all I too am TN and am trying very hard to be positive. Pepperpot I too had rads at James Cook and although i drove I met women who were given transport help. Can i ask why you do not want trial at N Tees?I am under oncologist at this hospital and have not been offered any trial,which makes me panic a little thinking they dont think Im worth wasting trial on.As i said I TRY to be positive but!!
take care kitty x
Hi Kittyw I see Oncologist at my home town Hartlepool and get my chemo here too. As I don’t drive its just the extra traveling making me reluctant about the trials. I may be able to have them here too I hope. Then when the chemo is finished and I am up again maybe the traveling wont seem so bad eh?
I think as Devon Debs said if you don’t ask you don’t get.
Have you thought of mentioning it to your Onc ? Maybe worth a try, or at least you may get an explanation darl.Its a lottery at times me thinks grrrr !!! xxx
there are criteria for entry into trials… things like age, other medical conditions, previous cancer and sometimes down to the grade and stage of your cancer or the type of tumour… not all hospitals have the trials either and if they have the full quota of participants then they can stop it… or if they find that there are significant differences apparent from the groups of participants it may stoop earlier than originally planned etc
dont feel just because they didnt offer it that there is no hope… some trials are just for people with advanced cancer and you would be exempt if you had early BC so its not all bad.
if you search here for breast cancer you will see all the current trials for breast cancer…
cancerhelp.org.uk/trials/trials/
Hi all, sorry pp for not coming back to you yesterday, one of those days where I had nothing planned but did loads. Anyway re Marsden man, I had just about finished rads when I decided to go and ask for a second opinion just for my own peace of mind and to make sure I had had the right treatment and ask his advice re follow ups. Really I suppose I should have done it pre treatment but I didnt get my act together. I just asked my Oncologist to refer me which he happily did. I got the appt for about 2 weeks later and Prof at Marsden confirmed the treatment I had undergone was the right one for me and suggested the follow up plan. I was glad I went, I needed to go as I was always questioning myself whether I was having the right treatment. Hope that help. Debs x
I suppose I should have asked this 3 years ago but does anyone know if there is a UK specialist in Triple Negative Breast Cancer?
Hi, I cant say i do, sorry. I didnt think to ask that. I was told yesterday by my consultant that they will be retesting my tumour when i have surgery around january time, to see if its still triple negative, has anyone else had this and if so did the triple negative status change??
thanks
anna