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Triple Negative - Excellent websites and Info

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Re: Triple Negative - Excellent websites and Info

Hi all,
This is very reassuring for me at a time when I'm beside myself with fear. I was diagnosed TN last May (1 week before my 30th birthday, woo!) and have just finished treatment. I had 40mm invasive tumour and positive sentinel node. I had chemo first 3x FEC and 3xTaxotere, which shrank the tumour to almost nothing. I then had a wide local excision (similar/same as lumpectomy?) and lymph node clearance. My pathology report from that showed all 14 lymph nodes removed were negative and there was only 1mm of tumour left, which was removed. I then had four weeks of radiotherapy, which finished a month ago.
Despite the positive response to treatment, I can't stop worrying about it coming back/mets. I am completely overcome with fear at the moment. This thread has given me hope though, thank you.
Linda999, mentnioned it spreading to her neck and this is something I'm worried about, as I've been having constant discomfort in my neck on the same side. I'm seeing my BCN next week and I really hope she'll take my concerns seriously.
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Re: Triple Negative - Excellent websites and Info

I'm fortunate in that in the North East group I'm part of, there is a girl (a mere slip) that is about 6 months ahead of me with her prophyactic surgery for BRCA1 triple neg. So I've never felt alone with it. And we also have a new member with TN.

I hope I'm not being naieve in seeing TN as a dire diagnosis as a thing of the past.

Jo XXXX

Re: Triple Negative - Excellent websites and Info

Hear Hear Jo-I think this website should be a sticky at the top of the tn forum.
I will be 5 years post dx in October.I have known about the 8 year thing for ages but the 4yr+ statistic was new to me although it may explain why my onc discharged me in May after 4 and a half yrs when I expected regular appts till 10yrs post dx.I see the surgeon for mammo in October and will discuss these figures with him then.
Valxx

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Re: Triple Negative - Excellent websites and Info

I'm reading the report on TN from the site quoted at the beginning of this thread and found this quotation;

http://nosurrenderbreastcancerhelp.org/breastcancer101/Types%20of%20Breast%20Cancer/breast%20cancer%...

'not only is there a very sharp decline in recurrence risk of triple negative disease after the fourth year post-diagnosis, but that the risk of distant recurrence falls to absolute zero!'

I'd read before that if there was no recurrance in 8 years it was unlikely to recur,but I didn't realise that the risk drops rapidly after 4 years.

I'm 46 and one year in. I've had lumpectomy, chemo (6 X FEC), radiotherapy and as I have a variant of the brca1 gene, am just embarking on hysterectomy and double mx and reconstruction.

To anyone with this diagnosis, I'd say the only way is up. Diagnosis is a very dark time BUT now I'm on the other side of some of my treatment, life is SO much better than it was before dx.

Jo XXX

Re: Triple Negative - Excellent websites and Info

That is a very reassuring website-thanks for the link.
Valx

Re: Triple Negative - Excellent websites and Info

Hello Shelob

Welcome to the forums, this is a very worrying time for you but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.

In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
Best wishes
June, moderator

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Re: Triple Negative - Excellent websites and Info

Hello All
I was diagnosed in June with Invasive Ductal BC, Grade 3. Margins and lymph nodes clear. Initially told would have surgery and 3 weeks radiotherapy. Suddenly they want me to have a strong chemo. Why? There is no evidence that it has spread and there are no guarantees that chemo will be beneficial so why would anyone put themselves under such invasive treatment? Help.
Shelob

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Re: Triple Negative - Excellent websites and Info

Hi Raemarie
I was DX in march with Invasive Ductal BC stage 3 triple neg but with no node involvement unfortunately at the same time advised it had spread into my neck (unusual as I understand it would normally hit the nodes first)
Surgery is no longer likely as Onc doesn't think it will benefit me - went straight onto chemo (weekly taxol).

Thanks for the website link - all info helps

Linda
x

Re: Triple Negative - Excellent websites and Info

Hi Raemarie, I was diagnosed with a 2.4cm tn tumour.From what I gather breastcancer spreads via the lymph nodes and/or vascular invasion. I had both and was given 4xfec,4xtax and 6wks rads after a lumpectomy. I'm nearly 8yrs clear. Triple neg tumours have a very good response to chemo else I wouldn't be here!!
Josie x

Re: Triple Negative - Excellent websites and Info

Hi raemarie,

just read your post as I havent been on here for a while. I was diagnosed in Feb with tnbc 28mm tumour no node involvement at the age of 41 with 2 young children (youngest was 5 weeks at the time) and my mum died too at my age now of cancer so I can understand fully where you are! I have had 5 of no 6 EC's chemos with the last one in 10 days time and then 20 rads to follow. It is a scary place but with help of the ladies on this site and your friends and family you'll get through this sh***y time. Feel free to ask me anything or pm me if you wish.. Jo x

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Re: Triple Negative - Excellent websites and Info

your welcome sweetie & yes the tapes will help all the best & keep us posted how you are getting on
sending love your way
Mekala x

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Re: Triple Negative - Excellent websites and Info

thanks Mekalar-

I had my oncologist apt today and will start FEC Chemo in 7-10 days time. At this point I just want to get on with it and come out the other side. Its going to be tough. My friend, who I haven't seen in ages called me last night and he has retrained as a hypnotherapist and he recommended relaxation tapes etc. This website has been such a help for me. thank you. xxx

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Re: Triple Negative - Excellent websites and Info

Hi raemarie
I think most of us have been in that 'unreal' zone I certainly have when I was 1st diag everytime I woke up it would hit me I kept having a reccuring dream of this letter from the breast clinic falling on the door mat saying how sorry they were but they had made a mistake & I didn't have breast cancer Id have this overwhelming feeling of utter happiness & relief then destroit when I woke up & realised it was just a dream .. it seemed so real.

I can imagine how difficult that must be your mum being the age you are now & it would be no good saying to you how much treatments have moved on as you are always going to have that part of losing your mum which is devastating enough, let alone now having to face the same thing .. you may be slightly in denial I know I was each time I looked in the mirror I didn't see me .. it wasn't ME it was some woman with breast cancer I couldn't feel me or see me I sort of lost ME & I wanted me back, but something does click in with time & I started to see me & smile at me but I totally understand where your coming from that is a very scarey feeling.

Im very fortunate to live next door to a wonderful lady & good friend she is a qualified reiki healer & hypnotherapist two days befor my surgery I was in a very bad way I can only discribe as a very voulnerable child scared & very alone .. she had a long talk with me & realised id left my body which I could really feel she gave me some hypnosis & it was like a lead weight was taken off me & during the hypnosis I see myself as healthy & well I dont think I would have got through my surgery a sane person without her, & although Im familiar with relaxation & meditation tecniques I felt she really put me back on tract to use the tools I had to re focus.

This forum has been a life line too & I also relate to all the fear now too not as a negative but a positive & its how we see the fear & worries face on with tears & all the other emotions that does make it positive its a release its 'reality' & in turn its what makes us able to deal with this. Dont let those around you tell you 'come on think positive' when your having a bad day or been tearful My lot KNOW now not to even go there LOL because you will have lots of days where things do just feel 'normal' < whatever that is & you'll smile & have a good laugh to. Just dont beat yourself up by holding onto your emotions it just gives us belly knots

Hugs
Mekala x

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Re: Triple Negative - Excellent websites and Info

thanks for all the messages and responses. It helps to know there are so many out there with the same diagnoses. I guess ultimately we have to trust in what the oncologists and Doctors advise. I am in a state of feeling surreal about the whole thing. Its just such a crap thing to have to deal with and although this has hung over my head all of my life it does not seem real yet, not sure if I am slightly in denial or what. I lost my mom when I was 17, she died at the age I am now. I think it makes it all a lot worse. Trying to stay positive. Thank you to everyone who contributes to this forum, its been a big help so far.

Re: Triple Negative - Excellent websites and Info

Hi raemarie

Another TNBC here like Laura I was diagnosed may 09 with 19mm gd3 neg for nodes and margins but pos for lymphatic invasion. Also had associated area of DCIS making whole area 28mm. I had Epi CMF Chemo followed by 25 rads in feb 2010. Also diagnosed as carry brca2 mutation around that time.

Unlike Laura Iv not had recurrence or mets. The research seems to support the theory if you make it to 3 without a recurrence then it's unlikely to happen. And if you make beyond 5 years without recurrence they pretty much consider you cured. Those with hormone positive cancers never get such reassurances so there are some benefits along with not having hormone therapy.... Unless like me you were unlucky enough to have had hormone pos tumour too.

I have a friend who had over ten nodes pos and large TNBC diagnosed 3 1/2 yrs ago with no sign of recurrence.

Lulu xxx

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Re: Triple Negative - Excellent websites and Info

PS Im a member on that website & yes they have some great information

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Re: Triple Negative - Excellent websites and Info

Hi raemarie

I was diag TN in April I automatically thought the worse with all the horror stories id read with TN

I was very fortunate that my lump was 7mm had removed + 6 nodes I think a sentinal biopsy is done in most cases mine was as I see it on my path report. All my nodes were clear so was the margin I also had no blood vessels attatched.

I automatically thought I would have chemo strongly recommended as I was classed as 'boarderline' It wasn't until I met my onc the 1st time who told me he wasn't going to recommend chemo in my case which I was thrilled about but very surprised but he was very reasuring. They take everything into concideration your age, size of tumor, node involvement wether your pre menopausal, menopausal, or post menopausal, Ive also learnt since other factors of the path report are taken into concideration the bits that are too scientific for us to understand. Everyone even with same diag is so different, just listen carefully to what you onc says, if you dont feel confident with what he is saying or he cant answer any questions you have then do ssk for a second opinion.

hope thats been a bit of help

Mekala xx

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Re: Triple Negative - Excellent websites and Info

Hi all I can do is tell u my story not much use with all the info try not google a lot it scare u to death I was dx in may09 had mx snb nodes were clear had 3 fec 2tax but the tax made my lump grow then rads which I fin in feb 10 thought was ok then I'm march dx with sec to lungs so now back on chemo there are a few who chemo don't work but loads that to and nor if u can get through first 2/3 yrs tn nor not so aggressive look on tn forum laura

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Triple Negative - Excellent websites and Info

Hello -

I was recently diagnosed with TN, no nodes, am 43 with 2 young children. The website mentioned below is very helpful information for positive for TN. Make sure and also have a look at the heading BREAST CANCER BY TYPE, and also A TALE OF TWO PATH REPORTS.

http://nosurrenderbreastcancerhelp.org/breastcancer101/TNBC/TNBC.html

I have had the lump removed and am waiting to see the Oncologist to see what chemo combo they will give me. From what I have read it seems to me that the TAX FEC regime is the best but not sure what I will be told. My biggest worry is that although it was not in my node (a sentinel node biopsy was done) what if it has spread via the mammary glands instead and just because it isn't in my nodes what is the chance of it spreading anyway, can't really find any information on any of this but I feel that I have read of others with TNBC no node involvement going on to have a reoccurred cancer. Any advise would be gratefully received. So scared about the months ahead. LOL