Just to add my tuppence worth-I have had 3 family members with bc in the last few years.The two with hormone + bc have since died of bc secs.The third who had tnbc is still NED after 7 years.Like so many of us I was terrified when I looked up tnbc and after 2 and a half years am still scared but no more scared than I would have been had I been +++.At least we dont have to worry about side effects of supplementary drugs[though I would like the extra safety net].
Love Valx
hi there
I havent posted on this for a while and just wanted to let you all know that im still about!!! I am 6 months post surgery and cant believe thats a year since I had mydiagnosis. Today I go for my 1st mammogram as part ofmy 6 month screening and not sure how i feel about it. want it but dont want it! Waiting on the result will be torture as not getting result tili go to the breast clinic on the 28th. i think i will have to phone and try and get the results before that. I normally work in the hospital (still off sick) so my collegues can check the results computer for me if need be. Other than that i’m well. Still taking a lot of pain killers and gabapentine for nerve pain but slowly trying to cut them back. Toe nails slowly recovering, they grow back then bits fall off them again. Hair thicker than it was before but much darker (and greyer!!). Most of the time I feel positive but still have weepy days when ithink why me… what next…how long do have. I see a counsellor now who is fantastic and has really helped me.
I hope everyone elseis feeling well and still hanging in there.
love to you all
GAIL xxxxxxxxxxxxxxx
Hi Gail
Good to hear thinks are going well for you and good luck with your check up.
I posted a link about nails a wee while ago and some clever woman advised taking Kelp extract which has made a huge difference. My nails and toe nails were splitting and breaking like yours but have vastly improved now.
All the best Anne xx
Hi Anne
Thanks for that i will give the kelp a try. Anything is worth a try and it might just help. Mammogram was ok today and not too painful. The worst bit was the pressue on my underarm as the nerve pain was awful the way my arm was placed. now a torturous wait for the results to come back.
love Gail xxx
Hi all
Just to add my tuppence worth. I was diagnosed January 2008 in my right breast, biopsy showed grade 3 with lymph nodes affected so I opted for chemo first and was given six lots of TAC at three week intervals. After the second dose there was no sign of my lump, which had been 6.5cm x 4.5cm great I thought, great it’s all gone. At this point I was also told I was in the minority as my cancer was triple negative, which I thought was a good thing, until I did the research. I had already decided on a bilateral mestectomy as I had a previous scare in the left boob in 2004 dealt with by a WLE and no further treatment. I had an axillary clearance on the right and was told that 5 out of 19 nodes were affected with spread to surrounding tissue but they had got clear margins, chemo had not affected this cancer and oncologist did not know why. This was followed by three weeks of radiotherapy. I have just been given the all clear following a battery of tests and scans since February this year as I have a pain in my back below my ribs on the right side which does not seem to be getting any better. I was very down when I read about triple -ve but there really does not seem to be any point in dwelling on it. I have not asked my Consultant for a prognosis, I have worked it out for myself and I have no intention of sitting wondering what will be. As my husband keeps telling me, I could walk under a bus or crash the car tomorrow (cheerful soul). Nobody knows what is around the corner, I take it one day at a time and make the most of everything I have. What will be will be, worrying changes nothing. The only thing that has changed is that I have been brought face to face with my own mortality so now have a different perspective on life which is for living. There are a few words my mother was fond of quoting that I find help me when I get a bit down, “God grant me the serenity to accept things I cannot change, the courage to change the things I can and the wisdom to know the difference”.
Love to you all
Nonny
Hi Nonny-triple negative can be a lonely dx cant it but this thread certainly helps.
Love Valxx
Hi all
Just been reading through these posts as I was confused about this triple negative issue, the docs only told me that the tests showed that my tumour was oestrogen neg and HER2 neg, I know the 3rd is progesterone and assume that was also neg but don’t know. I originally thought that to be neg was good as otherwise the cancer was more aggressive but some of the things I’ve read say the opposite. it really is all a lottery isn’t it. I had a WLE and all lymph nodes removed end of june, grade 3, had 2nd Tac chemo a week ago, have had very bad side effects, feel so weak and alone and wonder if its all worth it, maybe I should just stop treatment, enjoy life for however long I have (I WAS a very fit and active 58 year old) because at the moment I have no life.
I’m normally very positive and upbeat but this has knocked the stuffing out of me, I cannot believe how much my life has changed in such a short time. All that is keeping me going is my 3 grandchildren at the moment. I want to shout, scream, hit today but how can I do that to my husband, daughter, friends, who are all doing their best for me but as I said, I feel so alone. What a miserable cow you must be thinking, yes I agree and am telling myself to snap out of it and pull myself together. It justs helps to let it out how crap I feel. Sorry folks.
Dae x
Dae,
Don’t apologise,or think that you’re alone,for one minute.We’re all here for you & you will get through this.
I’m triple neg too,grade 3.I had my chemo first, 4xEC 4xTax,then WLE and I’ve just had no.13 of 19 rads.
I had a bad time on EC and remember thinking “I don’t think I can do this” but somehow you do get through it.
Having a supportive family & friends definitely helps, but you feel as if you want to protect them or that you’re always complaining so tend to keep it all in.
So,vent away on here, no-one’s gonna judge you,we understand more than most what you’re going through and we know that you will come out the other side.
Sending you big hugs,((((( ))))))
Little H xx
Hi everyone, not posted on this thread before and not really talked about my dx, but I’m triple negative too. My onc didn’t make too much of it, I think the hospital sees it as differemt not worse and that is the way I’m trying to think of it also. I had chemo first 4 ec, 4 tax then had a mastectomy with node clearance 3 weeks ago. All nodes were clear which was a great boost. Waiting for rads now to complete the treatment. I find it a real help to exchange notes with all of you fantastic ladies.
Love
Clare
Hi Little H and everyone,
The sun is shining today, I feel a bit stronger and life looks brighter! I suppose sometimes we have to kick and scream at whats happening to us, a release valve or something. As Clare says no point worrying about the triple neg issue, whether good or bad, thats what we are and just have to get on with it. Hoping to get out of the house today, just past the front door would be nice, haven’t been able to since last wed chemo because i feel so dizzy. Bad night last night, does anyone else get really bad heartburn? I got it after 1 week last time too and in spite of medication got it again last night so very tired today! May wend my way into the back garden later and have a snooze in my husbands hammock!
take care of yourselves and stay strong.
Dae x
im just pr pos what does that meen,the onc said i can have hormone treatment but it wont make alot of differance
Dear drabble,
Breast Cancer Care have a booklet “Understanding your pathology report” which may help you understand some of the terminology and treatments offered. You can download a copy by clicking on the link below. I hope this helps.
breastcancercare.org.uk/upload/pdf/pathology___feb_08_0.pdf
Very best wishes
Janet
BCC Facilitator
thankyou janet,i had a 17mm grade 3 cancer with 1 lymph node just pr pos,readin all this has made me scared of ny future,havin 6 fec on my 4th tomorrow just havin a bad day i have 4 childrten and i just want to see them grow up xxxx