3 1/2 years post diagnosis

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Hi all

Its been a while since i last posted on this site, but i wanted to hopefully give triple negatives some hope and comfort…

I was diagnosed July 2006 with grade 3 tnb…i had a mastectomy and full lymphnode clearance, when i went for my results they were awfull as i had had 2 3cm lumps and all my lymphnodes were affected. Two weeks before i was due to start chemo i discovered a lump near my collarbone and a lump just inside my collarbone, a biopsy showed cancer, i was sent for a urgent mri scan and there was a 10cm suspicious area on my chestwall…my onc pushed on with chemo 2 epi, 2 fec and 3 tax and by the end of it scans were clear.

I was absolutely terrified at the begining of chemo and thought i was going to die very quickly.

Its now Jan 2010, and here i still am!, i never take it for granted that it wont come back, i have learned so much about this disease to know how unpredictable it can be… but at present i am feeling great!! my team at christies are so chuffed im plodding along nicely and say that chemo can be very very worthwhile having…

Hope this sends hope out there
Best whishes to all

Julie xx

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Hi Julie

Thanks for your post!

I was diagnosed July 09 (4.5cm, 17/30 nodes, grade 3 TN), have had mx & have one last Tax chemo left before 5 wks rads.

It’s really great to hear from someone who’s a few years down the line & doing great! I try not to focus on the whole TN thing, but it’s hard to know that there’s no back up for us after treatment and I’m not sure how that’s going to impact me emotionally.

I’m glad chemo worked so well for you…hopefully It’ll do the same for me!!

Take Care

Hazel xx

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Hi Julie - thank you so very much for sharing your experience. I was dx in Feb last year with a 6 cm tn lump attached to my chestwall. Had 4 ec and 4 tax, then mx with some chest wall removed plus node clearance and rads. Was treated at Christies too. I’m lucky to have no node involvement and do feel quite (shh dare I say it) positive.

Thank you again and hope you continue to keep well.

Love Clare X

PS to Hazel - just crossed. The chemo shrank my lump to 2cm. Hugs to you that your treatment goes OK.

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Hi there Julie, well done to you!

A big thank you from another TN with huge node involvement (even after chemo!). Diagnosed with massive lump in October 2008, had mx., chemo., full axillary clearance and then rads., and of course letrazole. Scans were clear to start with, so - hopefully - remain so.

Your story is just the boost I’ve needed for future hopes and dreams. It’s just what we should all remember - statistics are just that - each one of us is an individual, made up of all sorts of different innards!

So well done and thank you again, and good luck with the rest of your treatment Hazel, you’ll get there! And, of course, Clare :slight_smile: !!!

Long may we all reign! Much love, xxJacqxx.

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Hi everyone,
this is a nice thread to read. I was diagnosed in July 2009, my tumour following original misdiagnosis had grown to 8cm. I went on to have 4 x EC and 4 x docetaxel, followed by a mastectomy. After months of thinking my tumour was still growing i had prepared myself for bad news. But when i got my results last wednesday they told me there was no cancer found in the 25 nodes taken and no evidence of vascular invasion. The tumour was also attached to the chest wall and although margins were close, my surgeon feels happy that it was enough. I think certainly the chemo must have done a good job, after months of not knowing that feels good to know. I think i would agree with what has been said before, this disease is unpredictable, i wasnt given a great prognosis to begin with, but i am sure that has changed somewhat now. I still have rads and further chemo to discuss with my oncologist but maybe this time round i will feel more positive about the whole thing. I feel that i have a future again and that feels wonderful.
take care
annaxx

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Glad to hear of good outcomes (well as good as they can be…plus good not the right word really)I was dx December 2006 and never thought I’d be here, pessimist you see. I had 4.5 cm lump 4/14 nodes and vascular invasion. I had the usual plus herceptin and feel quite good despite breaking my ribs yesterday in a crash, when my cars accelorator stuck and I went hurtling into a house. Thankfully only me hurt. I am still convinced that it will return because that’s my way of dealing with it.Scared to get complacent or the gods might punish me. I LOVE to hear of other people doing well. I also am aware that there are many darker stories on here and there has been so much loss on here that it has depressed me. So many who were regular users who aren’t around any more. I have used this site for three years and it is someone coming on here telling of how well they are after x number of years that help me to deal with all the fear that I htry to bury deep down. Lots of love to everyone Eileen

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Hello from another trip neg (and hi Jackie!)

It’s two years to the day since I was handed the BC diagnosis - nearly passed out, cause there was nothing there to feel or see and a daft sonologist had told me it was probably a degenerated cyst. I was so naive that when the oncs talked through the path report: “so, you won’t have to take Arimidex or Herceptin for five years like many others”. I think I said something like “oh good” and got some puzzled looks.

Finished treatment a year ago and went through a phase of jumping out of my skin at every random ache or pain, and then got sick again, which was scary, but turned out to be a troublesome ovarian cyst. I’d been trying to tell myself it was all psychological.

Finally feel I can properly start some kind of journey back to health. Minus a few organs (including one I’d never heard of and had to Google), and with some interesting scars, but hey…

Who knows what the future holds, but if the THING comes back it’ll get a run for its money, and right now I’m enjoying getting a little fitness back. Great to hear so many are doing well. Long may it continue!

L x

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I’m amazed at the size of some of these tumours 4.5cm? I’ve got 1.8cm and 1cm I thought that was humongous. It’s good to see some light heartedness as this really helps.

I’m due for MX on Wednesday 27th Jan and I know I’m so scared that I’ll get hysterical and run out of the hospital screaming.

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Hey Jacq

Excuse my ignorance, but what’s letrazole?

I thought that was one of the treatments for hormone responsive BC?

Chrissy, I was told in Nov 08 that the 1cm lump in my breast was a cyst & to leave it until it was golfball size & they would drain it…when they tried to drain it in May 09 it was no longer a cyst…after 2 months back & forward (you’re young it’ll be a haematoma…it’ll shrink…the swelling under your arm is JUST lymph nodes!)they finally diagnosed a 4.5cm TN cancer which had spread to over half of my lymph nodes. If I ever see the breast surgeon I dealt with in that 2 months again(he was only covering for a few months at my local hospital) I think I’d have to give him a slap!! He was so dismissive & downright horrible!! Grrrr!

Hazel x

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Hello Lyn, how’s it hanging? Much love!!!

Hazel, I’ll quote the Letrozole spiel from the leaflet for you:- Letrozole, the active ingredient in Femara Tablets, is one of a group of medicines called aromatase inhibitors. These block the production of oestrogens. Femara Tablets are used to treat breast cancer in post-menopausal women. They can be used either before surgery to reduce the size of the tumour, or after surgery to help prevent the tumour from returning, etc…

Hope that clarifies it. xxJacqxx

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Hey Jaqc

Did you still get the Letrozole even though you were TN?

Just wondering, as I was 3/8 for hormone receptors & was going to ask my onc this week if I would be getting anything after treatment, as my bcn wasn’t sure if I would or not.

Hx

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hi everyone,

chrisy i know what you mean, i had my mastectomy on 5th jan and i felt like that, in fact when i woke up from op apparently i tried to get up and go, i dont remember this because was still out of it but the nurse told me this and wasnt very happy with me. I was home by the friday though so you will be fine.
Hayz thats dreadful about your misdiagnosis, i was told 6 months earlier after a biopsy that it was a fibroadenoma, its frightening and so frustrating that the cancer could have been caught earlier, I now have a lovely surgeon and i think both she and my oncologist have restored my faith in their profession, i hope yours has too.
take care
anna

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jaq i cannot understand why your on an AI either as it doesnt have any effect on your TN tumour… however perhaps your one of these new discoveries of women with hormone negative tumours but positive nodes.

hayz… any hormone receptivity would respond to tamox or AIs and wouldnt normally be considered TN… triple negative would have no receptors… low ER is sometimes referred to ar ER-poor rather than ER negative.

as you are 3/8 you could still benefit from tamox but it perhaps wouldnt respond just as well as if you had been 7/8.

i would def say it wouldnt do any harm to have it and as i was saying to jaq there appears to be a new stream of people where the cancer mutates between the breast and the nodes… my consultant prof dixon is involved in the research on this so i suspect the WGH/SJH will be quite up on this.

hope that helps.

see you on thurs

Lxx

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Hey Lulu

That’s what I thought re TN, but mine has always been put to me & referred to as TN. My initial core biopsy came back 2/8 & this increased to 3/8 after mx biopsy.

The TN status was the reason my surgeon went straight for mx within 2 weeks of diagnosis rather than trying to shrink the lump to conserve my breast.

To be honest though I haven’t asked many questions. I’m more of a ‘just tell me the good bits’ kinda person…I’m rubbish & would just focus on the bad! I’ve obv got a lot more knowledge of this whole BC crap now & do have a few questions for my onc tomorrow. One of them being Tamoxifen or similar & I’ll also ask how they define TN.

Hxx

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When I was diagnosed in dec '03 my tn tumour was so aggressive the cancer was expected to return in the middle of chemo. They really didn’t think it had been caught in time!! It was grade 3+ and full of vascular invasion. I had 4xFEC and 4xTaxol (which luckily for me was on trial at the time) After treatment I was given a 35% chance of surviving 5yrs. I should think I’m living proof of how well chemo works on tn tumours for not only am I still here bit still ned as well!..and the breast clinic signed me off just before Christmas.
Josie x

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I love this thread, as it’s great to hear so many stories of women getting past that horrid 2 year blimp with triple neg!
I, too was diagnosed 3 years ago, with large 5cm tumour, heavy node involvement, and a dire prognosis. I spent last 3 years just expecting it to come back, and feeling like it was just lurking in my body somewhere. I am wheelchair bound due to damage to spine, (from taxotere), BUT…when the fireworks went off on New Year’s Day I just stared out of my window with tears streaming down my face, as the realisation hit me that I had actually got to 2010!!! It was marvelous, a real turning point, and I actually, finally feel cancer-free, for the first time in 3 years. I know that my optimism may not last, but it’s good enough for me at this moment in time.
I am going to have reconstruction shortly, and I am also seeing a spinal specialist at the Nuffield, Oxford, as I have decided to get my life back!My breast surgeon wouldn’t even consider me for surgery two years ago, as he was so sure I wouldn’t make it!
So, it’s not all bleak, for those diagnosed with triple neg, even tho’ the information and research is not particularly positive. It’s great to read of others who have got past that 2 year point, and I hope it gives hope to those newly-diagnosed, bless you.
Best wishes,
Jax

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Hi Jax, So pleased to see you posting again and that you have some hope. Sory I missed the meet with Judy but must meet you again sometime. I expect you have read my good news- NED on mammogram !! Nearly 2 years on from dx.

Best wishes to you

Rachy xx

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I was dx with tnbc in October 2006.Had FEC and Tax and still NED.
Long may it last ladies.Aim for the 8 years eh.
Love Valxx

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Hi Rach!! Just been chatting to Judy via e-mail, and asking after you! I am so pleased to hear your good news. Maybe 2010 is going to be a good year. Hopefully we can get together soon.
Val, it’s great to hear things are good for you, too. It is so lovely to be positive, but you always feel a little guilty for all those others for whom life is not so good for at the moment, don’t you? I just hope they know we care and that we aren’t being blase, it’s just a little sunshine in the darkness.
Lots of love to you all,
Jax

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Hey guys, I’m new to this thread. I’ve got good news and bad news.

The great news is that I am 4 1/2 years post dx with TN. I had aux clearance (2 nodes inf), lumpectomy (2 cm) & 6 x FEC chemo + radiotherapy.

Worse news is that I’m now on my third dx. Had mx last year with reconstruction after 2nd lump, again 2 cm same place, had 6 x docetaxel. Just had another lump dx last week, funnily enough 2 cm again, same place in the recon. Awaiting test results for metastases.

But I’m still here, feeling great, wondering how on earth I can have another lump when I feel absolutely fine. I have two children under three, and have no intention of leaving them for, well, at least another 30 years or so!

I went to the Bristol Cancer Centre after my first dx, I’m planning to go back, it was very good for get your head round it, and helping to deal with fear. We all have out own ways but I had to be reminded last week by a friend that I didn’t have to just be scared. Because I am very very scared, but I’m also now very positive and really happy with my life. My son walked for the first time yesterday.

When I was first diagnosed, I didn’t have any kids, and that was what scared me the most, now maybe I never would.

I started my second lot of chemo 2 weeks after William (my second child) was born. We can all do anything. This stupid dx can’t stop life going on. We’re all still alive right now, and I’m really trying to make every day count.

Although I am planning to live to 86, so that’ll be a lot of days xxx

If you’ve got this far well done - sorry I didn’t realise xx