Triple Neg - I Will Survive!

Hi Everyone, looking for some real life experiences here.

History. Stage III with 5cm deep tumour, 9 removed lymph nodes affected from 13 removed, had mastectomy in March 07, followed by 8 chemos and 4 weeks of rads. All finished up by mid December 07. Triple negative so no other treatments.

Just had 2 ‘lumps’ removed for biopsey on monday and been told today they are cancerous nodes. They are lower than the usual location, being closer to my primary site which was very close to chest wall. Get a CT scan on Friday, results of that next Wed to see if spread.

Can’t help but wonder how bad my chances are now I have a reoccurance and being triple neg. Is this just going to go downhill from here. Sorry for being negative right now, shocked, scared and feeling like it’s not going to get any better.

Any advice from other triple negs much appreciated.

Nikki

Dear Nikki, I am not triple neg but send you all my best wishes and positive vibes and hugs,

Hi Nikki

I’m triple negative and was diagnosed in May 2006. Had very similar treatment to you Grade III, 3cm tumour and 14lymph nodes affected, mastectomy, 8 chemos and 15 radiotherapy. Not had any reoccurences as yet though so can’t offer you any further news. I send you my best wishes and cyber hugs and will be thinking of you. Somebody did start a triple negative thread a few weeks ago but I’ve not been able to find it since.

Anniemay

Hi Nikki

I too was grade 3 invasive, triple neg. Dx July 07 - had chemo, mast with partial node clearance (9 taken - all clear), then rads - which finished March this year. I found a swelling under my arm in Sept and turned out I had 2 cancerous nodes - have now had full clearance. My centre only remove nodes closest to tumour as this is normal course of spread. But I had what they call a skip lesion - as in the cancer skipped past the nodes closest to tumour and went into ones furthest away. I had ac chemo but my tumour was unresponsive to this so they reckon the cancer in the nodes further away was there all the time.

Kind of a different story to yours but just wanted to say maybe your cancer has been in these nodes all along and is not a recurrence? Or have they said it is a recurrence? I had chest x ray, bone scan and bloods and all was good. They say I have a 20% chance of mets - but thats 80% chance of not.

I hope everything turns out ok for you
Sending hugs

Love
S
xxx

Hi Nikki

If you use the search facility at the top of the page (third box under the breast cancer care logo) click on this and then type in the search box triple negative it will bring you the threads where this topic has/is been discused.

Hope this helps,

Jo, Facilitator

Hi Nikki,

I am triple negative too.First diagnosed in Nov 2005 Right Breast cnacer Stage 3,had right mastectomy in Dec05 and node clearance on right, 13 taken ,4 cancerous; For treatments I had 6 cycles of Epi-CMF fromJan to July06 then 25 sessions of radiotherapy on chestwall and right collar bone area.I managed to go back to work for a full year 2007 but this Feb2008, I noticed a sort of fatty tissue underarm (left side) and annual mammogram showed a shadow,hence more chek ups,US,biopsies ,the lot…also had MRI,bone and CT scan…which nothing showed as secondaries,hence my new diagnosis as occult new primary on left breast.Had lumpectomy this time and full node clearance on the left side,31 taken 19cancerous…now having chemo and will have radiotherapy from Dec.I didnt fully understood triple negative the first time round…I thought I was lucky not to have Tamoxifen for 5 years…but only realized this year about re-occurence…It is also possible that the left side had also been there since 2005 but since it was so small, it was never detected.We can only take each day as it comes,enjoy what we can do,when we can do things.I tend to read more about triple negatives too for information so that I can ask questions during oncology clinics.

Veeluz

Veeluz

As you may see above - I too am triple neg. They say the chances of getting another primary in other breast are just slightly higher than getting the original bc, but reading your story only confirms my decision for me to get my other breast of prevantivly, which I intend to do hopefully about April next year and have bil recon at same time.

I wish you well in your new journey

Hugs
S
xxx

I too am trıple negatıve dx Oct 2006 and so far so good but always vıgılant.I can only wısh you well.Trıp neg does respond well to chemo whıch ıs why they tend to treat ıt aggressively from the start.
All the very best from Vxx

Hi Nikki

Really sorry to hear about your recent diagnosis.
Loco/regional recurrences can be quite complicated and I think there are lots of questions you need to ask your medical team. As sparkler suggest check whether this latest diagnois is thought to be a ‘recuurence’ or somthing sort of left over from your first surgery.

I am triple negative and was diagnosed with regional recurrence in April 2007 (having had primary diagnosis with 23 nodes with cancer in Oct 2008.) My own cancer was not amenable to surgery (too many sites of tumour) but sometimes surgery is posssible, nor to radiotherapy( I had already had rads to these sites during primary treatment.)

Since my recurrence I have been treated wiith vinorilbine and xeloda, xeloda on its own, gemzar and carboplatin. I am now on weekly taxol. In my case I was told at diagnosis that my recurrence, though not a distant spread, was not curable, and that only partial remission, if I were lucky, would be the best outcome. For some ‘one-off’ loco/'regional recurrences more lasting remission may be possible.

I have CT scans about every three months and so far no cancer in my major organs, though the tumours in my neck are worse and I have possible nodes in my stomach. Triple negative disaese, like all breast cancer, isn’t just one cancer…there are more and less aggressive types…I know I have been luckier than many in having had a poor triple negative prognosis but at least I am still alive right now.

I am the kind of person who wants to know as much information in general terms as possible…if you are too then you will need to question your oncologist etc. There is very very little information anywhere on the interent about loco/regional recurrences…I have had to find out most of my information through my own experience (like I have a ‘relatively unusual’ symptom of having damage to my voice box from neck tumours…I have never ever seen that mentioned in any breast cancer literature…though this is ‘unusual’ rather than ‘rare.’

Thinking of you as you wait for results…ask lots of questiosn and very very best wishes

Jane

Hi marionrae, thank you for your good wishes, all apprecaited :slight_smile:

Regards

Nikki

Hi Anniemay,

I am glad to hear you haven’t had any reoccurances, long may that continue. I must admit the trip neg thing has become a bit of an issue in my mind, lets hope they find something ‘extra’ for us soon eh.

Best
Nikki

Hi Sparkler, well I didn’t know it could do that! This place is such an amazing education, when all you ladies take time out of your own worries and fears to help others, much respect for that.

I am wondering the same thing about it having been there all along, the fact that these are closer to my primary site could bode well, in which case it should respond well to chemo (at least something us triple negs can feel grateful for!!) I think I am learning the right questions to ask next week once the scan comes in, I just pray no mets! I will add none for you either to that prayer Sparkler. Thanks so much for writing and helping me learn.

All the best

Nikki

Hi Jo, thanks for that tip, really helped to go trawling for theads about it, learning so much that is helping me adjust and hopefully ask the correct questions.

Regards
Nikki

Oh veeluz, I am so sorry that you had a new site like that, what an awful shock that must have been. I do hope that this is the end of your having to cope with all this and the future is much brighter for you. I definately didn’t understand the implications of my triple neg status, learning now of course. I am keeping all crossed for a clean scan and this being a ‘hangover’ from my first problem.

If it’s just these nodes then chemo, pah!! I can cope with that, done it once, can do it again. Besides, having been bald once, I have learnt a very valuable lesson… my ears do NOT stick out anywhere as much as I thought they did :slight_smile:

Best wishes to you
Nikki

Hi V / horace. Thanks for posting to me and your support, much apprecaited.

Best
Nikki

Hi Jane, thank you for sharing your story with me. You have been through a hell of a journey and I do hope that you keep doing well and winning the fight you have done so well at.

The first time, once treatment was done, I was too scared to ask for my prognosis I think, I sort of asked but my Onc said about hard to say, etc etc, so I didn’t push it. I wish I had been clearer in what I was asking back then, I know I can’t get X years but at least I could have known it could come back so darn quickly.

So, what now eh, well thanks to the advice I have got from all you amazing people here I will ask if it is a local reoccurance or something from the original (which was what my surgoen thought, but maybe he was trying to keep me positive) I am of course hoping against hope that there are no signs elsewhere, the scan will reveal that and I hate that I have to wait until a week today to find out, but that’s how it is I guess. If it is from the primary, that’s good, if it’s not well I will cross that bridge when I get to it. They are rechecking it for hormones / protein etc, I imagine if it became not triple neg then it’s new, it it was then it’s old, I will ask the questions either way.

I will come back and update as soon as I have news!

Thank you so much Jane

Nikki

Nikki

This site is wonderful for finding out new info. Until my last ‘blip’, I had never heard of skip lesions. When the words came out of the surgeons mouth my mind jumped a thousand miles an hour for the very few seconds until he explained what it was. Nothing in my life the past 2 1/2 years has been simple or straightforward - and all I say to my friends, workmates etc is trust me!!

Never mind - I sooooooooooooooo have the attitude now of live for the present. Will worry about the future as/if it happens. Have so many plans for the next 4 months at least - then hopefully recon if no more blips.

Lets us know how you get on

Wishing you all the very best
Loads of Hugs
S
xxx

Hi girls,I too am triple neg.Dx Dec 03 with a grade3,2.4cm tumour witha lot of vascular invasion and spread to one node.My prognosis then was 35-45% chance of 5yr survival.Infact because of the nature of the tumour they expected it to return before the end of my treatment.I had a lumpectomy,4xFEC,4xTax and 25 radios and cant beleave I’m coming up to 5yrs cancer free! It’s my 50th birthday next week and theres something I never thought I’d ever say but boy am I happy to be 50! I really hope my luck rubs off on you all…

Best wishes from Josie x

Hi Ladies

Was DX trip. neg in Oct 2007Grade 3 3cm tumour Lumpectomy no nodes involved then 4 FEC 8 TAx and 20 rads. I have just found another lump in the same site 2 week ago. Went to hospital on Tuesday for US and biobsy but was tiold even though they can feel the lump its doesnt show on Us so unable to do biopsy. Had FNA and im going back next week for results.
Tecnician who did US said it probably just a Fatty lump or scar tissue from rads. Ive heard stories of FNA not being very reliable. After reading some of your stories im worried that even if its normal should i still be concerned.

I to thought that being trip. neg was good not having to take tablets for years. I have learnt so much from this site as im having treatment in Spain and they still have the attitude that if they dont think you nedd to know then they dont tell you.

Good luck to all of you

Lynnex

Just to say thanks to Josie for sharing your story,we need to hear from triple negs who stay well.My cousin Noreen is TN and coming up to 7 years disease free.
Love Valxx