Thank you for your replies. That's what I was thinking. I know it takes ages to get the results and I think I would probably have to pay for it as there is no family history. Still, I think I'm going to make some enquiries.
I do know someone who was triple negative. She had her breast cancer 8 years ago, and nothing since. So that's a good positive story for us all to think about. It's the one that I focus on anyway, well, try to!
I hope everyone is enjoying our lovely monsoon season!
Lots of love
Hi Bunny, I was asked if I wanted to go for a Genetic test about 10 years ago. I did it, but at the time the results were pretty vague, I expect the technology has moved on now. They did take months to get back in touch with me though. Probably if you paid privtely for it, it would be a lot quicker.
Hope everyone is feeling well today, have a wonderful week.
Lots of love, Dianne x x x
Just ask Bunny-if you have a relevant family history you will be tested anyway but if you are really worried you may be able to pay to have it done privately.Bear in mind that the results can take meny weeks to come through.
I am also triple negative! I have just been reading this thread and wondered why they say that the treatment for it is quite standard and yet there are so many variations of treatment just in this one thread. I had a wle and a snb, margins and nodes clear. Just started FEC last week. I have three FEC followed by three Taxotere and radiotherapy.
Does anyone know how you go about getting a genetic test done? I'm terrified of re-occurrence and as I'm a control freak need to feel as if I'm doing something!!!!
Thanks girls xxx
Thats so good to hear Jax!
I'm always thinking what I must have done wrong to get 'it' I went to the gym and ate my veggies, didnt smoke and hardly ever went out!
Just got to keep our fingers and toes crossed that there's a cure for this soon...
love to you all xxx
Hi to you all,
I am so sorry to those recently diagnosed with triple neg, but just to say that I was diagnosed three years ago, like Horace, and my tumour was grade 3, stage 3, with heavy lymph node invasion, but so far, no secondaries.
I was refused a reconsruction, even though I asked several times, as my surgeon was SO convinced it wouldn't be worth it!!!! I am delighted to say I proved the statistices wrong.
I also agree that it is wrong of the media to try and lay the blame for BC on us, the person who suffers with it. I had my children early, breast fed them all, have never smoked, always cycled everywhere and had a generally healthy lifestyle. Yet they are still trying to pin the blame on us!!
I hope and pray you all manage to get through your chemo OK. Yes, it affects us all in different ways, and again, don't feel bad if you can't work and struggle through it. It does eventually all end.
With my very best wishes,
Hi Tina, I'm so sorry you are having to go through this, I'll be thinking of you on the 31st too & hope that it is just a blip. what an awful year 2010 has been.
I'm Triple Negative too, I'm 30 and had my 5th chemo on wed.
Lots of love xx
Hi Tina, Just wanted to say how sorry I am you are having such a hard time and hoping and praying that your next lot of surgery puts an end to it. You'll be in my thoughts on the 31st. (I'm negative too, but a long, long way down the line).
Hope everyone else is well today, lots and lots of love to you all.
Dianne x x x
another triple neg here- unfortunately things not going great 4me at the mo 😞 . Diagnosed late jan 2010 + had mx then fec-tax chemo. Just 3wks after my last chemo, rash appeared on my recon + several weeks later I was rediagnosed. It's the same grade 3 triple neg- locally recurring in the skin of the breast. The chemo clearly hasn't mopped up all the rogue cells + once it came out my system the cancer became active again. Having more drastic surgery on 31st followed by rads. Also having alsorts of scans at the min + praying there's no spread. I'm only 32 with a 15mth old son 😞
keeping everything crossed that this is just a blip + I go on to make a full recovery. What a year this has been- hoping it can only get better now...
Good luck to us all + here's hoping there's a medical breakthrough for us very very soon
I am triple neg. I had a lumpectomy (typical grade three), 6 FEC and 15 rads.Finished treatment on 30th Oct 2009. I've had my first clear mammogram- although it would have been nice if it hadn't taken 4 weeks to get the results.
My advice is not to look on the net too much as info on triple negs can freak you out!
I am still feeling tired but I like to fit a lot in, just wish I could lose weight, its all those steroids-they finally got the message on my last chemo (even though I had asked not to have any on the previous 5)I have had them in the past and they are not for me.
At least we dont have to have all the drugs after the treatment!Car
Just to say again that while tnbc certainly isnt good news it isnt a death sentence either.It is over 3 years since I finished treatment[dx Oct 2006] and though chemo was hard it was 'doable' and here I am-so far so good.
Hi Van & Patricia
Thank you for your advice. Will definitely try to listen to my body telling me what to do. It seems I have to just get my head around it and focus on getting the chemo done rather then thinking the unthinkable.
It is just that when the oncologist mention triple negative my head going into a spin and seem to go back to when I was first dx with bc. After the initial shock of bc I managed to go back to work before mx. Since then I was on able to cope - ie manage to eat and sleep well.
I read quite a few post re chemo treatment and it seem like you said everyone is different.
Thank you again for your advice and support.
The trouble is we are all different and react differently, I haven't had any trouble whilst the chemo was being administered but would feel tired later on. Whilst on the steroids was okay for a couple of days then the side effects would kick in. Mainly nausea and fatigue.
I have just had my last chemo and as Van says listen to your body and rest, most things will wait, especially housework. Then enjoy the next two weeks, I've done the necessary jobs around the house but also gone out for lunch, window shopping, made the most of the good weather etc. I too wish I could have slept through it. Unfortunately couldn't sleep and couldn't focus on anything to take my mind off it.
I'm not going to lie to you it's not easy but it's doable.
With you all the way.
I know that shock feeling all to welll.. I asked my consultant if Jeremy beadle was going to come out behind the dooor and that he was telling me it was a sick joke.....
5 chemo down the line and finally sinking in.... not a sick joke but for real. One more chemo to go and then 5 weeks of rads... then its done and dusted and over with ..... never again.....and I keep saying that.....I would never do chemo again I wold rather not knw and live my life.....
one piece of advice I can give you is listen to your moans....if you are sick dont work... if you ache dont work... lfe is too short and it will delay your chemo... mine by a week and it practically killed me......
Make the most of week 2 and week 3 after chemo cause they are the best thing since sliced bread as far as im concerned..... enjoy those to the full..... If only someone can give us a tablet to sleep throughout week one that would be fantastic.....
Take the offer of help from anyone... be brave.... cry when you want to and listen to your heart as well as your head.....
Thinking of you...... Van x
Hi to all
Hope you don't mind me joining you all here. Been told by my oncologist yesterday my bc is triple negative. Was devastated and crying all over again as I thought this is. He told me the outcome of triple negative is not so good compare to the non triple negative. All I can think about is that I wouldn't be around to see my twins (16 months)grow up. However he did mention that triple negative bc do respond to chemotherapy very well. Will start chemo next Thursday with 4x EC and 4x T and follow by 5 weeks of rads.
It is really inspring to read so many of you are doing so well with triple negative bc. At least it gives me hopes.
Would like some advice what to bring to hospital for the first chemo (some other thread said to bring ice lolly, pineapple juice etc). Also what to expect and any side effect straight away?
Thank you all in advance.
Hello everyone and especially Mrs XYZ and Saffronseed,
re sore mouth, my BC nurse told me to wash my mouth with salted water (put salt in a glass of water) after each meal and so far this trick has worked for me...I hope it does work for you too.
Best of luck
I was diagnosed almost two years ago with tnbc. lump less than 1cm with no node or vascular invasion. I was 55 when first diagnosed and was only offered rads after wle. I was told that this was a good prognosis and that chemo would be too drastic a treatment for my particular circumstances. However I have learnt so many horid things about tnbc such as it has a high relapse rate within the first two years, I am dreading the months that lay ahead especially as I was not treated with chemo. It also makes me so angry when I hear stories of healthy eating etc., of course a healthy diet is good, but it should never be deemed as something that can prevent cancer. My father drank smoked and did very little exercise and died peacefully in his sleep aged 73. On the other hand my uncle who was very fit for his age did not smoke or drink and excersised regulary, he died a very painful death from prostate cancer. Just goes to show there is no direct link between life-style and cancer, there is howerver an abundance of evidence to link life-style and heart disease. While the medical profession makes great strides in combating heart disease, cancer still baffles them. Imagine a world without cancer.
Hi, I am not triple negative but I am currently on FEC (3) and then 3 Tax. Like you i have 'mild' SE and symptoms but they are 'there' if you know what I mean.
My tongue gets coated and I do get sore gums, I had an small ulcer on my tongue too this time around. I brush my teeth three times a day with a soft brush and childrens toothpast, I also gargle two times a day with mouthwash (tastes awful but it seems to work). However it doesn't help my tastebuds and there are times when I just cannot face anything diary in my mouth and alchohol is a complete no no. Even plain water tastes nasty.
I do find my 'sore' and 'coated' mouth disappears around day 16 and then is ok. I do believe you can get something from either your Chemo unit or your GP if it gets very bad - but I have managed to treat it myself so far. hope that helps xx
Dear Mrs XYZ,
Welcome to the forums. I am sure the other forum members will soon be along to offer information and support. Meanwhile I thought the following thread might be helpful- "Top tips to help you through chemotherapy"- I have attached the link below.
I hope this is helpful. You may also find you get more replies by posting in the "Undergoing chemotherapy" section as well.
Very best wishes
have been diagnosed with IDC, grade3, stage1, triple negative, no nodes and vascular involvment on 14 Apr.
Had 14mm tumor removed on 21st and on 28 confirmed that tumor removed with clear margin.
Have been following your discussions for 3 weeks now, but had problems to log on. Moderator fixed the problem now.
I have had my first chemo on 21 May which is 3FEC(100)+3taxols, then 20 radios.
Was worried sick about first chemo, but it went very smooth, I had very mild effects and now off all pills which they give for the first 3 days. So feeling very lucky, as I understand some of you have unfortunately much worse reaction.
Just wanted to say it realy did help me to read all your messages and realise that I should not panic about chemo, but just go through it as all of you doing...
On the seventh day after chemo I had my tongue very white, cracked, burning sensation. Tried to fight it with rigorous mouth hygene and special anti ulcer mouth wash, but I think it became worse.
Any clues how to get better?
Hi - I was diagnosed with a grade 3 stage 3 trip neg 6cm tumour last August. I had 4 EC and 3 Tax (the last one was cancelled) and I had a WLE/breast reduction to remove the 2.5cm in March.
To find out more about my road trip then google redshoesgreenpeppers
Love and best wishes to all - P xox
I've got to apologise, I read the forum in a rush this morning, I'd had a rubbish nights sleep, worrying about chemo and was seeing the negative in everything!
Thanks v much for writing back, you havent scared me at all. I liked the garage story!
I so hope I am going to be ok (but dont we all!) I mean I have tickets for James Morrison 3 days after my 2nd chemo, so I've gotta be ok, havent I!
Thanks everyone, Emma xx
PS my name is changing in a few days, they are having trouble with the *&* part so it will soon be Emma-30 xxx
Emma, please don't be scared! If anything I have said has scared you then I have not explained it well.
I went to my first EC by way of the garage! It was one way of getting a lift to the hospital as I dropped my car off for service then got them to drop me at the hospital! I was very chatty and cheery and finally as we drew up to the hospital the chap asked if I worked there...his mouth dropped a bit when I said what I was there for!
My reaction was due to the injection...and each time the treatment got easier. I was always fine for a couple of days after the treatment, in fact after the first test I always drove myself there and back. I was never sick, they always gave me emend on the day and one to take home for the next day which worked brilliantly plus some other stuff to take home with me which all worked, in fact I never had to take it all.
I suffer fom travel sickness really badly so was very relieved to find that I wasn't really sick with EC. The most I could call it was queasy...trying to be totally honest!! There are other side effects such as sore mouth, but this can be helped by mouthwashes and if it presents itself as mouth thrush, a mouth rinse or lozenges.
Perhaps it's best not to know...but I would have preferred to be prepared as it all took me by surprise. But you pick up quite quickly and the good weeks are such a bonus and you will find you can do so much. In fact some react to the steroids given by excessive energy immediately after chemo...then a crash.
The steroids made me a bit wakeful the first night...but I was given lorazepam, an anti anxiety drug, to take just after chemo for a day or so and it was very helpful.
I'm debating whether to send this as I really don't want to scare you. Things always seem worse when you're looking into them...once you're participating it's never as bad...honest.
I hope I've helped, I certainly mean to.
thank you jax and hope thats help alot will take it as it comes thx again ladys billie x x x
hello emma have been ok on ec and not suffered with it at all and try not to worry the doc knows best to wot your treatment sould be and as jax and hope have said if you do feel ill let them know asap
billie x x x
I'm really scared now!
How were you on EC billiegirl?, can you describe the days after chemo so I know what to expect!
I wasnt asked if I suffered from morning sickness or travel sickness either. I had hyperemesis (spelling?) with my daughter and was sick constantly for the first 3 months.
Should I be worried that i am only getting EC and not taxol?
I would reiterate everything that Jax has said, we are definitely all different. That said, while taxol is a powerful chemo it is known for much fewer side effects than the EC and yes, I did find it a breeze I guess. Virtually no horrible side effects to deal with (by that I mean the sickness, the sore mouth I suppose) I generally did okay on taxol so you could well be the same.
Obviously there is progressive tiredness...I take that as a given. Taxol is different to taxotere, just in case you are reading about the side effects and bone pain on that...definitely not to be confused. I have heard taxol described as taxotere light!
Anyway you may well find taxol easier to cope with than FEC, I certainly hope so.
Wishing you strength and power.
Please don't worry too much about what effects chemo has on other people, cos' your own experience could be so much easier! I was quite sick on FEC so Tax was quite a bit easier to begin with, but then I suffered from horrid joint pain. Just be prepared to tell them any worrying side effects you suffer, as soon as you experience them, so that they can provide adequate relief/or change dose etc, as with Hope. You may have read other Tax threads, and I have said before and would like to reiterate, please, if you suffer on chemo, make sure they know, and that they make a note!! When I complained of pain, they looked at me as if I were odd, and said that wasn't usual!! You only have to look on this site to see that it is!
But I also know lots of people find Tax a breeze, so I hope this will be the case for you.
All the best,
hello hope im having ec im on number 3 and haveing taxol next im worrying about the taxol one i hear alot of people dont take to well to that one 😞 if you dont mind me asking wot are your experiences on it .billie
I know what you mean about not finding many on EC. I did 4 x EC and 4 x taxol last year. I actually only did 3 x EC in the end as they were wanting to give me a dose dense chemo which meant every 2 weeks instead of the usual 3. To do this I needed the neulasta injection and I had a really bad reaction to it... almost hospitalised! Anyway I was all for not doing chemo at all as it was so bad! They got me back in by reducing the total by one and by saying they would reduce the dose as I obviously metabolise quickly. They didn't reduce the dose but the second one wasn't anywhere ner as bad and in fact I managed to do the taxol two weekly without any extra help and kept my white blood cell count up!
All do-able but if you want to share your EC experiences I'm very happy to do so.
No am at the QE in Gateshead. Am still waiting for results before moving on to oncology.
Sorry I don't know about the different types of chemo. debx
Midge are you at James Cook? I am, and starting my first chemo next Wed.
Im going to have 6 x EC chemo, has anyone had the same? All I can find is FEC?
some TNBC is of a basal or basal like cell type but not all all TNBC is... mine is basal like.... you probably wouldnt know if it was basal unless you asked as its not always given as standard as part of your pathology.
Hi hope you don't mind me posting am not tn but for while I thought I might be so did a little bit of research on tn. I was wondering if it was also called basal cell cancer? The reason being all of the breast care team from my hosp went missing today ( I live in the north east ) because they were all at a v important conference on new? or different treatment for basal cell cancer - so my consultants secretary told my gp. Just wondering if this was national or local or if things had maybe changed. But please forgive me if I have got this completely wrong. Dx
Thankyou all so much for taking the time to write back, I really dont know what I'd do without this website.
Lots of love to you all, Emma xxx
Hang on to the good times, and we will all try to stay positive for you! You have a very good prognosis, and chemo is known to be very good at tackling TN. Having said that, I think we all know how every ache and pain sends horrid thoughts through our mind, no matter how good or bad our prognosis is. I have found it so useful to know that others wobble all the time, and it's not just me!!
Enjoy the lovely weather, and all the very best during your chemo. Keep us posted how you get on, and we will all be rooting for you!
Glad you had a great time with your family in Leggoland. There are lots of positive stories for women with your diagnosis so as everyone is saying just think of chemo as making sure everything is caught and got rid of. I know it feels scary starting chemo but time will fly by and it will soon be behind you. You can do it and we are all here for you.
Sending lots of love and positive vibs Anne xx
emma,dont be scared of chemo hun,think about it gettin them cancer cells if they are any,chemo is really doable the worst part for me was the losin my hair how vain is that,the time goes really quick i had mine this time last year xxxx
I do hope you're feeling more positive this morning. I'm sending you love and hugs and I hope you feel a huge wave of positivity coming your way. I am so positive about my future and would like to share that with you. Chemo has improved so much and is really catching any of those escapees...belt and braces I know but necessary.
Glad you enjoyed your time at Legoland, I have many happy memories of being there when my children were younger!
Your dx is looking good. Positive thoughts zapping straight to you. I'm glad you enjoyed legoland.
Here is a copy of my post earlier :A positive story:
My friend, was triple neg 13 years ago. She had just finished breast feeding her 4th child. She had positive nodes. Had a lumpectomy, chemo, rads and more chemo. Five years ago she was given the all clear. She is now just battling with stroppy teenagers. What a wonderful battle to have to fight !!
Hope this can lift your spirits
Love to all us triple negs
Well I've had a lovely few days with my family near legoland, and now back to reality...
I'm getting myself all worked up again, can someone give me some positive thoughts??
My lump was 2.5cm, grade 3, no lymph node involvement. Triple Negative. I had WLE and they got it all out. I am about to start chemo in the next week (they said this is to mop up any stray cells), then radio... I have tried my best to be positive since the start but I'm going downhill now, having stopid thought about how long I have left etc. I'd appreciate any comments that will 'make me positive again!'...
I hope you can help me? Emma xxx
Have pm'd you! Brilliant idea with the juices but, as we both have found, it's just too difficult to do anything these days...shame.xx
I am so sorry I have missed your ramblings! I was wondering how things were with house sale, children and all, but thought you hadn't been in contact due to stress of it all! What a great idea you had, and what a shame you were shot down in flames! It's like the idea I had of making fresh veggie juices for people too busy to make them, and doing a kind of doorstep delivery, but when you look at H&S, insurance liability etc, ...impossible. the best laid plans of mice and men etc! I have pm'd you with my home email; if you still want the odd chat, it might work better that way!
Hope interested in your discussion and agree basically with your analysis re food etc.
I know it is different all over the country but I wish they had drop in centres where you could go straight to get checked. I had a clear mammoghram 6 months before finding my lump - and nearly 8 weeks to wait from Gp to op which I will always blame for causing my spread to secondariews. I kept being told a few weeks will make no difference but I think that 8 weeks did make a big difference. I know a lot of woman had not been referred as quickly as they should have with GP's making decisions they are not qualified to make and specialist centres would be a step towards earlier detection and therefore better prognosis.
All the best to you all Anne xx
Oh, probably my fault and you've been saved from my ramblings where I was thinking of setting up a place here for those recovering from treatment to have a sort of refuge with access to spa treatments and just somewhere to get away from things. I felt it would allow me to indulge my nurturing instinct as well as make this house work for its living. Unfortunately I was shot down by all the medics who said that all the health and safety issues would be too difficult to overcome!
Oh well, I'll have to think of something else. Putting the house on the market now...ready to downsize.
I have now learned to wait until I see that my post or pm has registered and it doesn't always happen after one press of the submit button! very, very frustrating!
love and hugs
Lovely to hear from you! This silly system...I don't appear to have received any PM's since January, so forgive me if I haven't replied! It has been a while since I posted, but good to hear everyone battling this evil disease in any way that feels right to them. I am looking forward to meeting my new consultant. After agreeing to reconstruction, and going thru' whole pre-op lark, which was all fine, with no surprises, he just suddenly called me in and said no. No reason given; just he had 'hoped' i would reach that conclusion myself! Now why on earth would I do that?! Hope all is well with you and yours,
You know Scaryfox, I completely understand your thoughts, but you just don't know. Triple negative is a whole bundle of cancers that they haven't yet found solutions to, but who knows, that must include those cancers which, whilst not found in large numbers, may not yet be a death sentence.
I know that secondaries are incurable though treatable so I really feel for you and your worries about your and your son's future...but it is a future and you are you and not a statistic, there is always hope.
Just slap me if I'm being too optimistic. We're always here for you to share thoughts with and we're not going to shy away from talking about your darkest thoughts...it's important to know that you can speak really freely here and that there will always be someone to listen.
Jax, so nice to see you on here ( I have sent you pms!) So it doidn't work out with the good old Mr L...so sorry. I do hope that your new consultant is more understanding.
It is definitely not our fault, how can it be if research has yet to pinpoint any causes. I understand that you feel cheated, who wouldn't when it has affected your life so greatly, but let's not crucify ourselves...we have enough to deal with.
Maria, 13 years ago! Well done your friend and good luck to her with the stroppy teenagers...been,no, AM, there! Didn't think they had enough information 13 years ago to identify all the markers but good to know that some people had this information...it certainly helps us!
lots of love
Thanks for that story Maria! With secondary triple neg I doubt I'll see my son be a teenager... unless they come up with something new for us TNs pretty quickly - but it's gives me hope anyway! Need more of these x