I got the news yesterday that my bc is tn too. Onc confirmed it was grade 3 stg2. I had already guessed it would be TN. But its still abit of a shock. The cancer is about 2cm and i have have pos node involvement. I will be starting chemo any day now...not sure when, I am waiting for a phone call to have a tour round the chemo unit! I have read, read and re-read about tn and although there are plently of positive stories out there, there are also not so positive stories. im scared of re-occurence before ive even started chemo. i just cant get it off my mind. I am 37 with two girls 8 and 11. I feel I have been given an early death sentence and worse that i could have passed this onto my girls now too. I read that 15% of bc's are tn...but there seem so many being diagnosed with it. My onc told me there is lots of reserarch being made into tn and said something about a new medicine being on trial which may be available in 12 months time?? I just want to know there is some hope to hold onto. I want to beat this,not only for me, but for my girls to. I just hope i can do it. xx
Wishing you well ladiies with chemo. It's a long hard road and we are hear to listen and provide advise if we know the answer.
Paint nails dark colour if you can as this can help in keeping them during chemo.
Cut hair short if you can face it as dropping out makes one feel more depressed
Get on the list for counselling for you and family if you can
Drink lots of water as this helps flush out toxins...chemo
Make own drug chart to help with keeping on top of meds as mind may suffer from chemo fog. Its important to keep on top of anti sickness drugs to help with any sickness.
Antibac handles and ask people to keep away from you if their unwell.
Buy a temp reading gague
And if having a lot of chemos you might want to see if hospital will give you a PIC line
Remember you are not alone.
Thank you, it's good to hear some positive things. There's so much negativity surrounding tnbc it's so easy to get swept up in it all. I'm trying to stay positive outwardly for my family, but inside I'm scared. I just want to get started on chemo now as I hate the waiting part, it gives too much time to think!x
Taran, there are survivors out there. It's just they're getting on with life and not much on these sites and there is progress on the research front. We like you have to believe we can make it. We're here for you whenever.
Im so sorry you are here with us in this forum and so young with children.
I had grade three node involvement (4 out of 25) so had chemo first, then surgery (lump removal and node clearance) then 20 rads. That was 2014 and I'm still here. There is a lady on this site 14 years since original diagnoisis and there are people who survive this. Try to get some counselling for you and family and take all the help you can.
ps. I think most TNBC are grade three and some TNBC resond well to chemo.
How we all doing?
still trying to get breast lymph down but hey I'm still here. Hand pain is still bad as is pain under arm but at pain clinic next week.
anyone else got ongoing surgery,rads pain?
The MDL seems to be working. Breast what is left is beginning to change colour as it went reddish. I've on,y have three sessions so about another 6 to go. I think breast lymphodeama is more tricky to manage. With the arm you get a stocking but there doesn't seem anything for the breast that the NHS supply and bras will not fit both breast sizes!
Great news Den. I'm seeing surgeon tomorrow with hand as its still not right. I'm having breast MLD sessions daily now. Wearing foam in bra but that horrid in the heat.
Arnie - is in another TNBC thread this May set up. She has possible reoccurrence and needs to hear from anyone having TNCB twice. She's scared and needs replies.
please can anyone in this field with positive support try to contact her via the thread?
Hi all new posters I went through chemo with Whitfield like what she as said any questions I. Will try and answer.
I'm popping back to say hello to newbees. I'm coming up to my 2nd mammogram this August. The journey has been hard with this and that but hey I'm still here.
any questions just ask.
and good luck.
ps still recovering from hand operation 🙁
Great news AnnDaw. So pleased for you.
hand continuing to cause problems,. Scar is very red and I've lost a lot of movement. In wrist. Not sure it was worth it. I have to rub Vaseline on scar and force through pain hand to certain positions. They say on pamon, no,gain on the leaflets. But as I exert and flex it makes the cps car redder and it hurts like hell.
That's good news AnnDaw you can relax now
pam hope hand imroving
bee good to hear youare3year clear
I have been having what is thought was frozen shoulde limited movement in left arm not mastectomy side dr wants me to have X-Ray to eliminate "anything" before he gives me cortisone inj will be glad to get that out of way trying not to think what it could be DEN
Hi Pam and everyone else. Went to hospital today to have a bit of fluid drained off that had built up after node clearance op. My follow up appointment should have been next Monday but saw consultant so got results early. There was no cancer in any of the nodes cleared so at moment am cancer free. Trev and I are elated and feel like we've gained a bit of normality back. Hope everyone else getting on ok.xxx
Oh yes, 3x fec and 3x fec t. Every 3 weeks. Hubby had to give me daily injections each week after chemo to boost white blood cell. Fun! I was never sick, weak but that was more the dermatomyositis I think. Lost the hair, its now back to how it was, shoulder length....phew.
Hope your hand issues get sorted, sounds nasty. Ive been back with a lump on collar bone and lump in arm muscle in last 2 years. Both turned out to be fatty lumps. Had one removed, collar bone still there.
Take care, annette
Yes screening is yearly for 5 years, then I dont know what frequency, 3 or 5?
Diagnosis was invasive ductal bc, spread to 2 nodes, it was the huge lump in armpit which sent me to breast clinic. 11mm lump, wle and lumpectomy. Cant even see scar on boob, she did all the cutting and stitching round the rim of nipple area, boob looks exactly the same as pre surgery! Fab surgeon. Wle scar under arm v neat too. was never told anything else, I never asked about the path report or prognosis, etc, oncologist said its better not to know!
Triple neg not really discussed!
Umblebee, good to heat your three yr check has gone well. I thought we needed checking for five years? What was your diagnosise.PAM X
SeeiNg hand surgeon today 😳
Decided to add to the thread! Ive just had my 3 year all clear screening..phew. diagnosed with triple neg bc april 2013 just before 50th birthday.. Lumpectomy, chemo and rads. Back to full time work april 14. The BC triggered an automimmune disease dermatomyositis which hospitalised me for a month, still on steroids and will be for life..joy. Also other issues, gallstones, spondylolisthesis in back, need spinal surgery but refusing it as long as poss, cant face it! surgery could cause relapse re the dermatomyositis. Now gp decided ive got a prolapsed bowel! Great body ive got.......told my parents they gave birth to a faulty daughter lol! But I feel fine apart from the backache and sciatica, can cope with anything as long as im cancer free. Everyone says how cheerful I am, I just feel grateful for what ive got. Had my moments of course, but very rare.
I can advise any of you starting out on the treatment train that it soon passes and you will recover. I was never sick with chemo, just exhausted. Rads were a doddle. No drugs for us triple negs, so apart from the yearly mammogram no further appointment s which did feel odd at first after practically living at the cancer unit!
So keep positive, life can get back to nornal, even though we always have that little fear that never goes away...
Love to all, Annette in sunny east yorkshire!
Yes I am. Seems to me most hospitals are good at treatment but the finer things like stitches removal let them down. Mi still have the stitch in my chest left from another cyst removal. I went back three times with that one.
im worried they will have to open up scar to get these out as they're preventing movement 🙁
Many thanks yes I'm on FB. How do I join the group?
hand problem continues. Hospital have left stiches in by mistake and now I have an infection and the stitches are em ended in the scar tissue. I may need another op to sort out. I'm wondering why me 😢
Glad things are improving Pam and hopefully no more problems for you after this one you need some normality back ducky.I had my drain out yesterday or I would have been stuck with it until next Tuesday.I haven't had any leakage and had first proper shower which was lovely. It was in for 5 days so different for everyone I guess.xxx Hope everyone else is ok.xxx
Hand is improving. Stiches out yesterday. One scar about 3 inches long on wrist and one on hand palm about one inch. Trying to exercise it with doing other breast exercises, lympodema drainage I've no time....
sun in is out 😄