I’m new here can somebody help me please?
I’m new here can somebody help me please? Posted for new user
Doreenyvonne
Hello
I’m new here - can somebody help me please…???
First a short intro
My name is Doreen
Born in England living in Germany
Age 53 years young
Diagnosed breast cancer April 2006
27.04.06 - Biopsie / lumpectomy = Hormone Ostrogen/Progesterin neg
Her2 - neg
Mai 06 - 5 x from 6 TAC Chiemo (had to stop because of polyneuropathie /
severe Fatic Syndrome)
Aug 08 - Op (partial mastectomy)
29 from 32 Lymph nodes infected
Hormone Ostrogen/Progesterin neg
Her2 - neg
Tumor Grading 111
Staging T2 N3 R0
09.2006 - 33 x Radiotherapy
Ok back to my question … can somebody help me…???
I thought Hormone Ostrogen/Progesterin neg
Her2 - neg was good!!
But having read so much on the net I now understand
that I was wrong and that 3 x neg isn’t good at all !!
I have a greater chance of a re-occurrence within the next 5 years…
Is that right ??
I had to stop my chiemo earlier due to severe polneuropathie - restless legs.
One year later I am still numb everywhere but with total numbness in my legs, feet and finger
tips. I still don’t taste properly and my hair has only grown back partially, I also suffer with
concentration problems, poor vision and hearing difficulties.
Will these symptons go away again, well according to my Neurologist my legs, feet and hands
will probably only improve minimally because there is too much damage to the nerve endings.
Has anyone out there similar problems ?
Is my prognosis as bad as it seems?
regards Doreen
Hi Doreen
Very sorry you are going through such a rough time.
I am also triple neg. It just means that after the operations, chemo and rads we dont have any further back-up treatments. I was told by my onc that it means my grade 3 cancer isn’t as aggressive as it could have been and it is good not to need the extra treatments. He did say that there was a high risk of recurrence within 2 years but then the risk decreases each year. To be honest I don’t think there is a “better cancer” to have, either positive or negative.
My feet are just starting to get back to normal and I finished Docetaxol last november…although my 2 big toe nails came off yesterday for the first time!!.
I wish you well and keep your spirits up.
Suzanne
xx
Hi Suzanne,
thanks for the message and the info which was very helpful.
I also lost all of my toe and fingernails too, but they have all grown back now.
Best wishes
Doreen
xx
I’m Triple Neg as well. Hi Doreen,I was dx with 2.4 grade 3,with 1node involved in Dec '03.I’m sorry to hear about the problems you had with chemo.Luckily for me I wasn’t too bad at all.I had 4xFec and 4xTaxol followed by 6wks radiotheraphy.My toes went numb and it’s taken nearly 3yrs for the feeling to come back completely- so theres still hope for improvement with you! I have six monthly checkups with the oncologist and a yearly mammo and checkup at the Breast Clinic were I was told to stick to a low fat diet(I’m dairy free anyway)keep my weight down I’m fit and well and surprised to find myself 3yrs down the line and still ok!..Lots of best wishes
Josie x
Thanks Dear Josie
thanks for the very encouraging words. I’m on check-ups every 3 months and mammo every 6 months. Did you get a second bone scan after the chiemo or do they just do that if you get new symptoms?
What is done at your check-ups -
What do they think of tumour marke in the u.k. is it reliable
thanks again
xxx
Doreen
I only had scans after dx and before op and treatment.They dont test for tumour markers with early stage bc,and wait until symptoms appear(if they’re going to) before you have another scan.
For the first 2yrs my checkups were very thorough but now its just like a conveyor belt and all over in 5mins.I dont mind this at all as its far less stressful!- I’m just asked how I feel and then a quick check for lumps and bumps.I have been told at the Breast Clinic that if at all consernad about anything to come straight in.
Thanks Hi Josy
thanks again for aquick answer it’s so nice to have some one to “talk to”
The system here is very different, you always see the consultant - oncologist and waiting time is usually around 30 mins. They don’t always do Tumour Markers but for the first 2 years the check-ups are every 3 months, in the 3rd year 6 months and then the next 10 years annually. I am still at the stage where I’m scared to death that it’s come back and every ache and pain is thought to be the return.
When I think logically I know it’s daft, but thats the way it is.
Take care xxx
Doreen
Doreen Hi Doreen
I am negative to hormones too…i finished my chemo end of Jan…and Radiotherapy 3 weeks ago,and i know exactly what you mean about the fear of it coming back…
I too had lots of nodes involved…i mentioned Tumour Markers to my Onc and he said they dont do them due to them being unreliable…
I think we triple negatives have that feeling of complete limbo after treatment has finished…a feeling of…what now!!
First 2 years are the highest risk then it starts to drop,im already wishing my life away wanting my 1st 2 years to be done with…how crazy is that!!
Just wanted to tell you your not alone…and we are supposed to respond to chemo very well,so keep that thought to get you through…
Best Wishes
Julie
not alone Hi Julie
Thanks so much for your message.
On the one hand it’s nice not to be alone but on the other you don’t wish this on anyone 
My treatment ended in November , do the 2 years start from then?
Stupid question really, I know I have to wait but like you I’m wishing my life away.
My tumours responded very very well to chiemo, just the rest of me didn’t 
and my onco said it’s always a good sign when the tumours react so well to chiemo.
Do you also have the niggling feeling that they don’t tell us everything or am I the only one who is so paranoid.
Take care and best wishes
xxx
Doreen
I think they do tend to tell us how it is- warts and all, especially in the first couple years - they’ve got to! Dont think about the statistics,I wanted to know if I had a chance of beating it…and in with that chance is good enough for me! The two years usually start from the date of your op- so I’m three years,four months and three weeks down the line!
thanks Hi Josy
thanks for the answer.
I had my op in August so I’m 9 months down the line… and hoping
Take care
xxx
Doreen
The trouble with triple negative Hi Doreenyvonne
I was diagnosed in Oct 2003, triple negative like you. Had 6 AC pre surgery and 4 taxotere after surgery. Hated chemo but technically tolerated it ‘well’ and sympathise with your bad time. Had 23/25 nodes with cancer. Always knew I had a poor prognosis, but lived well and mainly happily (yes with the fear which goes with the territory) for 3 and a half years after diagnosis. Always expected a recurrence but was hoping during the last year in particular that I would fall on the right side of bad statistics. But my luck ran out.
A few weeks ago I was diagnosed again…with a regional recurrence in my chest wall and superclivicualr lymph nodes…not the recurrence I expected. Mt other organs are currently showing no evidence of disaese but my recurrence counts as Stage 4. One of the problems for us triple negs ifs that if we get rceurrence we have fewer treatment options.
I’v e just started a chemo combination of xeloda and navelbine…and hopig this will kick the cancer into partial remission for a while. If it fails then the options left according to my onc are gemzar, cisplatin or caroboplatin and then ‘anything in a trial’ (ie some other chemo combo…there are no targetted drugs for triple negative bc anywhere near human trials.)
Someone has to fall the right side of bad sttaistics and you still have a chance of that…but no triple negative is not a ‘good’ b. cancer (nor is any other but some others do have more treatment options). There is so little information out there, so little reserach being done on our kind of cancer…we all need to be shouting a bit louder about this. Whenever another aromatase inhibitor or her2 drug gets press coverage I want to scream at the editors…what about us…what about us trip negs?
Jane
Hi Doreen,you say you are at the stage were you think every ache and pain is it coming back- join the club! I have a friend who’s a nurse and17yrs down the line who still freeks out before the yearly mammo that she demands!
triple negative Hi Jane,
thanks very much for your answer.
I’m so sorry to hear about your recurrence. I have heard of
both xeloda and navelbine and hope that they work for you.
I don’t understand why there is so little reported about
triple negs. Good that your other organs are free but I
didn’t know that we had fewer options in the case of a
recurrence, although having said that I can remember
reading on an American site (Her2-support) that radio
therapy can only be done to the same breast once.
I wish you well and I’m pretty sure that I’ll be sitting in the
same boat one day, a feeling I just can’t shake off. Probably
feuled by fear!!
Love and best wishes
xxx
Doreen
17 years on… Hi Josy
I’ll be happy if I live that long !!! But if I do I’ll probably be
exactly the same as your friend. I’m sure it’s a fear that
never disappears. Luckily I don’t have to demand anything
here in Germany I get a mammo automatically as cancer patient.
Take care and best wishes to your friend, too
xxx
Doreen
Why not much reported? Well its because there isn’t much to report. And no news doesn’t make a good story…unlike ‘new wonder drug’ which does.
Problem with triple negs is that there is not much information about what makes our cancer grow, and until this found then treatments can’t be developed .
‘Triple negative’ is a misnomer really…there are receptors wwhich make our cancer grow but they’ve not been clearly ientified yet. When they are then targetted treatemnts can be developed (as they have been for the her2 receptor.) There is some research on receptors which occur in our cancers (chemo brain at moment so can’t remember the name of receptors our cancer may have.) but its still at fairly early stage.
Jane
Thanks Hi Jane,
thanks again for the answer, I’m in the middle of reading
your postings but I’m only up topage 17, really interesting
stuff, your knowledge is amazing and some of it is really
amusing you have really invested a lot of your very valuable
time helping others … from me a very big thank you.
Take care I wish you well
xxx
Doreen