Any triple negative survivors out there?

[Taran]

Pam, I have an appointment to have my hair chopped on Thursday. But I didn't know about the nail varnish so thats a great tip thanks! Any dark colour? Fingers and toes? My toenails are permanently painted but will get my finger nails done before starting too!

netti I feel the same way, that it's like an early death sentence 😞 Really trying to just focus on getting through the treatment and not letting the thought of recurrence into my mind as much as possible. But it is so hard. I'm seeing the oncologist this morning so I'll quiz her on the trial that might be coming next year, and see if she has any news on that for us. Have you told your children yet? I hope that went ok. xx

[netti37]

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

[suzanne2]

Hi Anon sorry u find yourself here! But I hope this group helps, where are you from? It turned out Taran and I are both midwives who work for the same trust but in different hospitals, mad isn't it!!! I was diagnosed a year Feb I had a lumpectomy then chemo and radiotherapy, I had a 2 cm tumour and 5 out of 13 positive nodes, atill scared and worried most of the time xxxxxxxxxx

[Whitfield]

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.

Sending love.

Pam x

[Taran]

Hi, I'm sorry you are joining this thread too. There's so much support here though, it's a good place to be when you find yourself diagnosed. It's so difficult for people to know the right thing to say isn't it. I've tried to accept that they mean well, and really there is no "right" words in this situation. My favourites so far have been "sorry to hear your under the weather" as if I've got a cold!! And "that's rubbish news" which is such an understatement I didn't quite know how to reply!! But at least they have given me a laugh now I remember them!!

I've got young children too and it's such a worry dealing with all of this and them. I have my oncology appointment this morning and should be told when I'm starting chemo but hoping I might be joining you with starting next week x

[Anon16]

Can I join your thread too please. I got told my cancer was TN on Friday too and start chemo next week then surgery and rads. They do seem quite positive but I'm in shock and denial big time. I'm 37 and have an amazing 18 month old daughter. Annoys me that everyone says 'oh you'll be fine' because I genera hide my feeling and am strong but they are not going through the emotions!

[Taran]

Suzanne are you a midwife too???

[suzanne2]

I'm from nantyglo near ebbw vale, have a look for me in Facebook Suzanne Baugh

[Taran]

Wow Suzanne, where abouts are you? I'm in Pontyclun and am on Facebook yes x

[suzanne2]

Taran I am also from South Wales, what part do u live in and are u on Facebook xxx

[Taran]

Bel, thank you so much for posting. 14 years post diagnosis is amazing!! I hope one day it can be me saying that to someone else. Until then it's just 1 day at a time!x

[bel]

Hi Taran, sorry to hear you've been diagnosed, and just wanted to say hi as I'm 14 years post diagnosis and fine :-). At the time I didn't really realise triple neg was supposedly worse than not being triple neg so I never thought about that aspect of it much - though believe me, I did plenty of general worrying about the whole thing, which is totally normal, I guess. Wishing you the best of luck with your treatment. And please remember, it is totally possible recover from this and go on to live a great life, even though I fully understand that might be a bit hard to believe right now.
Love,
Bel X

[Taran]

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]

Thank you, it is good to read some positive things. It's so easy to get swept up in the negativity of it. I'm positive outwardly, but inside I'm so scared. I just want to get started on the chemo now and get the next stage of this started. I hate the waiting around, it gives too much time for thinking!! xx

[Jolanta2013]

Hi Taran. I know exactly how you feeling. My daughter was 18 months when I was diagnosed, I was so scared that I will never see her growing and going to school. That was something what's scared me the most at that time. And now my daughter is almost 5 😀. And I'm cancer free 👍😀. So be strong and believe that everything will be ok

[Jolanta2013]

Hi. I been diagnosed with triple negative cancer in 2013, and after chemotherapy, lumpectomy and radiation I'm still alive. Just had my yearly check up, and everything is ok😀, so please don't read all the frightening news about TN breast cancer and try to be positive. There is lots of women who survive TNBC,

[Whitfield]

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.

pam x

[Taran]

Thank you for replying. Suzanne, I live in South Wales. I have been so lucky as everyone I have met so far has been fantastic, and everything has happened really quickly. But I can't believe how quickly I can go from feeling quite positive, to being in tears at the fear for the future. I honestly had never considered that I might have these beautiful children and then not be around to help them through life. It breaks my heart when I look at them. It's good to hear positive stories. I guess we all have to hope we are the exceptions to the rule for this. xx

[suzanne2]

Hi Taran, so so sorry you find yourself here, I had same as you WLE and then a full node clearance as 5 out of 13 nodes positive. I understand how you feel we all feel the fear it's u real, but as Pam said there are people who survive this, it's a tough journey but you will get there Hun, where do u live xxxxxxxx

[Whitfield]

Hello Taran,

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.

Good luck.

ps.  I think most TNBC are grade three and some TNBC resond well to chemo.

pam X

[Taran]

Hi everyone, hope you don't mind me jumping on this thread. I was diagnosed with tnbc 10th may. Had WLE and ANC 19th. Have been told I have grade 3 with 4 positive nodes (out of 25). I'm waiting now to see the oncologist to start chemo and then rads. I have 4 children (youngest is only 3 months old) and am terrified I won't be here long enough to see them grow up and become independent people. It's so hard to get your head around the future now 😞

[Whitfield]

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?

pam x

[Whitfield]

Well done Suzzane re getting back to work.

psm x

[suzanne2]

Hi Pam, hi all, hope you all all doing ok? I'm back at work but still struggling at times with the worry. Pam my boob is still red just hoping it goes. To all the newbies on here hope u r doing ok xxxxxx

[Whitfield]

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!

pam x

[1852]

Hope surgeon can sort hand problem out for you pam .
Is mld working ?
Hope everyone ok DEN

[Whitfield]

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.

pam X 

[1852]

Hi pam just to let you know X-Ray on shoulder showed narrowing and inflammation phew had steroid inj today hope hand improving DEN

[Whitfield]

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?

pam x

[1852]

Hi all new posters I went through chemo with Whitfield like what she as said any questions I. Will try and answer.

[Whitfield]

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.

pam

ps still recovering from hand operation 🙁

[CatherineJ]

Hi Yellow, how are you doing now? Shame more ladies don't pop back on to tell us newbies how they are doing. x

[CatherineJ]

Hi Chrissy, how are you doing now? The tiredness is such a fickle thing isn't it?

[CatherineJ]

Bumblebee, did you have chemo?  I didnt, and some days get very worried about that.

[Whitfield]

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.

P x

[Marina]

Hi ladies,
Glad all doing just about OK. I do enjoy reading your posts although I don't write often.
I am on cycle 6 of 8 chemos.
Have found another 3 lumps just where original one removed so now waiting for mamogram & ultrsound before mimi op date. Just when you thought all was under control!! They say they are not cancerous but want to analize further when out.
What is the FB group you mention Sandy, I can't find it.
Have a good weekend all
Marina

[1852]

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

[AnnDaw]

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 

[bumblebee63]

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

[Whitfield]

Bee , no chemo?

pam x

[bumblebee63]

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! 

Xxx

[Whitfield]

 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 😳

[bumblebee63]

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! 

[Whitfield]

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 🙁

Enough now....

[Amanda10]

Hi Pam
Hope they sort your hand out as soon as possible. I bet your feeling really fed up with it all at the moment. Sending you a big fat hug xxx
Hope all other ladies are doing ok xx

[Whitfield]

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 😢

[Pugs]

Hi Pam 😊 Are you on Facebook? I can send a request to a TN Survivor group all over the world with over 2,800 members. It's so awesome for good honest feedback and other journeys. Cheers, Sandy x

[Whitfield]

Good drain is out. Wishing you speedy recovery.

pxx

[AnnDaw]

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 

[Whitfield]

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 😄