Hi Shell,I was given a poor dx 5yrs ago because my tumour had so much vascular invasion they didnt think I’d complete chemo without it returning…But I did and I’m still ned! This breast cancer is so unpredictable that there are quite a few of us who have slipped through the net of poor diagnosis!
Josie x
Hi Shell,soz I cant help with the info you want, just starting on the chemo road on Tuesday. But keeping everything crossed for your scan.
Hi Jax glad to hear your sticking your fingers up to the docs…CONGRATULATIONS on your two year anniversary heres to many more.
Right going to read up on the chemo lingo now!!!Get myself reved up for the fight.Well thats what Im telling myself.
Keep well everyone, speak soon.
Tina xxx
Hi there, an other triple negative one!
Diagnosed in 2005, 1,8 cm tumor, only sentinel lymphnode involved, chemo, radio, good prognosis. But things did not go so well, local relapse in 2006, mastectomy, further chemo. Diagnosed with secondaries in lymphnodes in neck and chest and in right lung in february 2008. Actually on taxotere/avastin, and keep my fingers crossed!
xxx
Hi all
I am 62 and was diagnosed January 2008 6.5cm lump with node involvement right side. TAC first, six lots last on 6th June then bilateral mastectomy, on 1st July (had a previous scare with LCIS/DCIS on the left in 2004 just a lumpectomy no chemo or rads) and axillary clearance right side five out of 19 nodes affected with some tissue invasion. Advised the cancer was Triple Negative. Then three weeks rads in September. Have peripheral neuropothy in both feet and left had is slightly affected.
Just beginning to get my life back. Hair about one inch long, still no eyebrows, eyelashes very, very short, won’t need a bikini wax to go on holiday and it looks like I’ll never shave under my arms again! More good days than bad now. Started swimming again, don’t think I will get back to riding though.
Had first check up last month, had X-ray because of cough but was clear, thank goodness! Have another in six months. In the meantime however my back at about waist height on the right side has started to hurt all the time, worse sometimes than others, but it is always there I just can’t get comfortable sitting, standing or lying down. How long do I leave it before I contact someone about it? I presume it will be my Oncologist I speak to as he did say any problems ring me.
I feel as if I am on my own now, even though both my Breast Care Nurse and the Oncology Department have said to contact them I don’t want to be a nuisance and worry them about every little ache and pain.
Any feedback would be appreciated.
JaneRA
Have followed your posts with great interest, your advice and various web addresses have been so helpful.
Love to all
Nonny
Dear Nonny if your oncologist said to phone he meant it!I would use the bcn as first line and at the same time go to see your GP.I found that my problems fom taxotere took a very long time to resolve.I finished in May2007 and for a year had awful back pain in the middle quite high up.Both GP and onc reassured me and it has now gone.I still have peripheral neuropathy in my toes and fingertips,no eyebrows and my asthmatic cough is usually there.But none of this has worsened and things improve very slowly.Chemo also leaves us more vulnerable to arthritic pains.I was 62 at dx and it seems to take longer to get over side effects as you get older.
Good Luck,Valx
Thank you Val, I was thinking along those lines but needed someone to give me a push to do it. They don’t tell you all the side effects of Taxotere do they? I suppose they don’t want to frighten you too much! I was never told about peripheral neuropathy until I got it, was told ‘Oh yes, that can happen. It might get better or it might not. If it gets really painful we can do something about it.’ I was told my hair would definitely grow back, but I know of some cases on Taxotere when it has not, I am lucky mine is growing reasonably well, the same colour as before but a bit wavy this time, always been dead straight before. My hairdresser days it will probably go straight in time, shame, I quite like it wavy.
I’ll speak to my BCN and keep you posted.
Jennie
hi everyone. i wasnt told by my cons that i was triple negative, they told me i was ER negative and a few weeks later that i was HER negative but they never actually told me that my cancer was dif. i read something on one of the forums here and realised that i was actually triple negative. i asked my cons on tues and he said yes i was but never explained why they didnt tell me it had a worse prognosis. when they first told me my results from surgery they said that my chances of being alive in 10 years was 87% and if i had chemo that increased by 3.3%. but they told me chemo was optional and it was up to me to decide whether to have it or not. but i dont understand this cos being triple negative chemo is the best option for me. i asked him why they didnt recommend the chemo when they knew i was triple negative but he just said that as it was only offering 3.3% it was optional. i am very confused now, the percentages they gave me was before they new i was triple negative and although he says that is still the same i am not so sure. i feel that they are just giving me stock treatment and not treating my cancer as dif from hormone positive women. dont know what to do. if i had the money i would go private but that is not an option. i am having 6 FEC and am worried that this is not the best treatment as a lot of women i have read about had 3 FEC and then 3 Tax but what do i know i am just a patient and to question them may do more harm than good. anyone got any thoughts about this. sorry for waffling on. i just feel very isolated cos everyone else i talk to are hormone positive and cant really help.
martina
Hi Martina,
I’m triple-neg too, i was dx oct 07, but as this was my 2nd time was only offered chemo and that worried me as i know i don’t have anymore options other than more chemo if it comes back. I was given 4epi and 8cmf, and now i’m on a trial (react trial) don’t know what good it will do but can’t lose anything and it is a bit of a comfort even though it might just be sugar i’m swallowing. I honestly do’nt think it matters what type of bc you are dx with, mentally it does your nut in. In our case because we are in a minority 15% it doesn’t seem to give us less positivity, i myself don’t feel positive at all and i know i shouldn’t be thinking like that but i can’t help it, i know what you mean by feeling isolated because most people you talk to seem to be taking some form of pills as a safegaurd and although it doesn’t give them gauranteed immunity, it does give them that bit of extra hope. So far i don’t have secondries but in my mind feel it is just a matter of time, mabe it is because i’m going through it for a 2nd time i don’t know, i would like to be able to forget about it for a while at least, but at the moment it is all i seem to think about. I don’t talk about it much to any of my family or friends because i feel they do not understand. There you go, you thought you were waffling on, at least on here you are not isolated.
Love Reneexx
meant to say does give us less positivity
Hi Everyone,
First diagnosed in March 2007 just past my 39th birthday. Stage 2 Grade 3. Radical mx as tumour close to chest wall. Triple Negative. 13 nodes removed / 9 cancerous. Chemo was 4 FEC and 4 Taxotere followed by 20 rads.
All good until Oct 2008, when rediagnosed with a local reccurance. Subsequently updated to incurable. No further mets… yet!
Had portocath fitted (wonderful thing) then started Carboplatin in early Dec '08, had no response and the tumours progressed quickly despite having had a clear scan post surgery. Have them in the lymph nodes across chest and collar bone, including them pressing on my throat. In Jan '09 switched to Gemcitabine plus Taxol on 21 day cycles with both day 1 and Gem day 8.
Just had 3rd cycle scan and the tumours are stable, but no shrinkage, not surprised at this as the comparative scan was done when the disease was running unchecked through my body. I am hoping the next one will show some kind of reduction.
Have been away from site for a few weeks, work been manic and also went away on holiday to Iceland, where my wonderful OH proposed to me, under a sky full of the aurora borealis… happy is an understatement.
I would like to add my thanks to the BCC team for listening and giving us this thread and those members who campaigned for it as well.
Hugs to everyone.
Nikki
Hi Everyone,
I received a copy of my oncologists report to my GP yesterday and having had a proper read of it today I’ve realised that I’m triple negative too,but no-one has said it to me!
I’m on 4x EC then 4xTaxol,had first chemo 10 days ago.I thought when all this treatment was finished I’d be taking something such as Tamoxifen for 5yrs but am I right in thinking there’s currently no tablet for TN? And is there a greater risk of it coming back?
I’m having a PICC put in on the 23rd(day before next chemo)so hopefully I’ll get the chance to ask about it,but don’t know when I’m seeing my onc again.Can’t help feeling abit annoyed that I wasn’t told and I’ve had to work it out for myself.
Congratulations Nikki,your OH sounds like a very romantic geysir…get it?Iceland?..sorry that was a terrible joke!!
Love Little H
Little H yes you are right about there being no follow up treatment for TN.As for the rest its a bit mixed.JaneRA has most of the answers re TN but I’ll give it a go!
1)in the first 3 years it tends to have more chance of recurrence than hormone+ cancers.
2)from 3-5 years that levels out until by 5 years the risk is equal.
3)after 5 years there is slightly less risk of recurrence than the others
4)after 8 years it is very unusual indeed for TN to recur
The real problem is that if it does come back as secondaries there are fewer treatment options for TN,
however HER2+++ patients are slightly worse off because although they have herceptin their tumours tend to be quite aggressive and herceptin isnt always successful in squashing the primary bc,for secs however they do have some good chemos available.
There is no good bc and as you see none much worse than the others.The most important factors are node involvement,size of tumour,grade of tumour,margins and vascular invasion…I give up really!!!
Love Val[TN dx Oct '06 so far so good]
The only thing I’d add to Val’s answer is that ‘triple negative’ is a very new term…only really been used for the last 5 years…and some oncologists are hesitant about using it as a term, because it suggests that ‘triple negative breast cancer’ is a ‘type’ of breast cancer. Its not…there are several different kinds of triple negative breats cancers…yes they are all er- pr- her2- but they are not all the same. It is likely that triple negative cancers have other kinds of ‘receptors’ which have not yet been discovered (well some of them have but no distinct treatments yet)
Triple negative cancers are not necessarily more aggressive than other breast cancers. As Val says all kind of factors play a part.
Jane
Hi all
I was diagnosed in September last year 17mm tumour, grade 3 with 3 nodes affected, full node clearance. Just finished 3 fec/3 taxotere and first I knew about triple negative was when I saw a different oncologist at last chemo session who used the term. (I had been told tumour was not hormone sensitive). I must say when I first googled it I was devestated but have picked myself up again.
I have just finished my chemo and starting rads beginning of April. I can’t wait to get excercising again as I was a regular swimmer, anyone know if you can swim when having rads?
Good to have this threat and worst thing for me is not knowing what I can do to minimise risk of recurrance. I think I have a healthy lifestyle, eat well, excercise etc so at a loss what to change.
All the best. Anne
Thanks so much Val & Jane,
I’ve calmed down abit today and you’ve helped put things into perspective.I’ll still mention it to my oncologist next time I see her but don’t feel so alone after reading these posts.
Congrats Anne on finishing your chemo,I’m like you though,thought I had a reasonably healthy lifestyle but wonder if there’s anything I can do to reduce the risk of it returning.I don’t relish the thought of constantly looking over my shoulder,will I always be wondering is it gonna come back?
Lots of love
Helen x
There has been some reputable reserach that a low fat diet and exercise reduce the risk of cancer returning in er- and pr- early breast cancer. As far as I know no research done on Stage 3 triple negative breast cancer and diet.
A low fat diet is generally healthy.
Many women feel better for taking some ‘control’ by changing diet. Others like me feel its a bit like shutting the stable door afterwards. I got a recurrence but I was high risk and so never thought diet would make any difference (though used to eat reasonably well…recently chocolate has taken over to compensate for continual chemotherapy failure…but thats another story.)
best wishes
Jane
Hi all
Thanks for the info Val and Jane I will look at my diet and reduce fat and I can’t wait to start exercising again. I definately need to feel I’m doing something positive to help myself and lose the weight put on during chemo. Chocolate has never tasted so good before!
All the best for your chemo Helen - yes it feels great to finish and I was lucky I didn’t have too bad a time hope you are the same.
Saw a brief clip on the news last night about nightshift causing bc haven’t had a chance to look into it yet but have done nightsift for many years anyone else a night worker?
Anne x
Hi Anne,
I read the article in the Mail re compensation in Denmark for nightshift workers etc. I’ve been a stewardess for over 20 yrs and have heard all the comments about flying and breast cancer,I don’t know what to think but it is a worry.
Has anyone heard of Jane Plant,who advocates not eating any dairy? I must say I get a bit fed up with all the conflicting advice…eat this…don’t eat that! Sorry,in danger of turning into a rant and I’ve had such a lovely day in the countryside enjoying this sunshine.
Love Helen x
Hi Helen
Must look into the night shift more as I am due to go back to my job at some point after finishing rads and it is a worry if this could be a cause. I think not knowing what caused it is the worst thing but you could beat yourself up going over everything in your life.
I have not done much research but think think the low fat diet has been quite well researched, not sure about no dairy. Anyone point me in the direction of good research? I know exactly what you mean about conflicting advice!
The sun is shining today as well so I plan to get out and potter in the garden. Things always feel better when the sun shines.
All the best Anne xx
I think the dairy thing is more for hormone positive bc as it is related to the artificial hormones given to cows to stimulate milk production.The low fat one is pretty well documented I think.
Valx