Have just been reading through chats on triple neg stuff and am now really scared as everyone seems to either have had a recurrence or their prognosis is really poor and I am now worried sick… Had lumpectomy 1 mth ago and start chemo on Tues. Start with 4 doses of FEC and then 4 of another cant remember name and then 6 wks of rads. My lump was actually a cyst that contained cells and have 11 lymph nodes involved. Feel like is there any point if its going to get me so soon after. I really hate this disease.
Really sad as have two beautiful little baby boys.
Sorry to hear you are really sad, but join the club, am a little down tonight too. Can’t really help on the triple neg stuff, as am HER2+ and not had any surgery straight onto chemo for me. Having 3 x FEC, 3 x Taxotere then Herceptin. Have just had last FEC yesterday and next session is the start of the tax. Let me tell you though, chemo is so much more doable than you could imagine, it doesn’t hurt, and I have to say, I have not suffered any side effects as such, apart from hair loss. But if you do get sickness, you must speak to onc, bc nurse or chemo nurse and they can change you antisickness tablets.
You must try to stay positive, most of all for your kids. I can’t say don’t think like that, cos I have my really down days too, and fear the worst and what ifs and how will my hubby cope with the kids. I am 39 and have a daughter who is 3 (4 in December) and a little boy who is 10 months (1 in November). They keep me going though, as life goes on and they don’t understand any of it. They make me smile, make me laugh and make my heart melt. I am so very sad some days and wonder how long I may or may not have, makes me cry and setting me off now typing this to you. But then I know that we are fighting back with chemo and I read so many stories on here of people being around for so many more years, so keeps me going.
You will get so much support on here from everyone, whether in similar position to you, or like me different position. They have all been a lifeline to me, and whether we all want to laugh, cry, scream or rant, we listen to each other and help.
Take care and let us know how you get on. Keep smiling for your boys.
Thanks I know i am not the only one but just cannot get it out of my head that I will not see my little boys grow up (one is 21/2 and 9mths) I try and be positive but just feel gutted and really worried as if chemo and rads don’t work have no other treatment options. Hopefully tomorrow will be a better day.
Oh bu*ger…just spent 5 mins typing an essay for you…lost it all. Try again…
Hello! I am 34 and triple negative too. I was also very scared when I first found out. It does seem that there is a higher risk of recurrance during the first 5 years but then it evens out to the same as everyone else (actually less than others I read somewhere). Anyway I have had many many days like you but I feel upbeat and positive today (despite the fact I am having my first Taxotere tomorrow - have done 3xFEC and it has shrunk by 50% already).
I’m bloody well gonna do everything I want to do for the next couple of years and enjoy myself, just in case it comes back - I have a 5yr old little girl and an 18 month old little boy - so totally understand how you feel. But that makes me more determined to be here. I have also decided to have a bi-lateral mastectomy to reduce my risk of recurrance (also just to spice things up they reckon I prob have the duff gene so more likely to see one pop up on the other side - nice twist). I have come to the conclusion I want to make sure I have done everything possible to get rid of the nasties.
Anyway rambling now so just want to send positive thoughts and hugs to you.
Take care
Love
Ali
x
I am also triple negative. I had lumpectomy in January, then 4 x Epi 8 x CMF and am now on second week of rads. It is very scary I know, but somehow you keep going. I don’t know all the ins and outs, but they say that chemo works better for triple negs. There are lots (and I mean lots) of women who survive this awful disease, so why should we be any different? I know it’s hard sweetie, but you’ll get through this, just take it a day at a time and before you know it, all the treatment will be behind you. You will have dark days (we all do), but once your treatment starts it does get easier, honest. As everyone says, chemo is ‘doable’ and, to be honest, I found it quite easy. The rads is a pain as you have to go every day and it’s a bit like ‘groundhog day’, but, so far, my skin is holding up really well and I’m not too tired. I’ve had quite a few laughs (well a lot if I’m honest) along the way and soon the good days will outnumber the bad. You’ll get tons of support on here and we’ll be here anytime you need us.
Oh and another thing…triple negs respond REALLY well to chemo (just as well) and I could feel the difference in my lump after just one FEC. Hope that helps…
xxxxx
Hi C, yes it is scary to be triple neg I am now 18 months post dx and finished treatment in Nov lastyear. I have been told it’s a 50 50 chance of recurrence and just hope and pray I shall be in the good side of the 50. I now manage to get thro most days without thinking about it, this time last year I was convinced I would not be here now, but here I am and am getting on with life, and making the most of every day as it comes. You will get over the shock of it all
Try to stay feeling OK. Everyone says that triple negs respond better to Chemo. Lots of people end up on the good side of statistics, Try to relax and think all will be well
Easier said than done I know
Very Best Wishes
Alison
I’m triple negative too. I didn’t even occur to me what this meant, when I got my results I was just so relieved that I didn’t have to take tamoxifen for 5 years as I wanted another baby (have a 3 year old and was trying to have another when all this happened).
Then I found out I was Her2- and was told this was good but then worked out this meant I was triple negative. To be honest though even if it is 50/50 chance of it recurring there is absolutely nothing you can do about it, I look on it that my cancer was just one of those things that happened - very unlucky (understatement) but it was just a freak occurence and if it was a freak thing then chances are it won’t happen again! That’s how I see it anyway. I’m still having chemo and having a really crap time and can’t even be thinking about it recurring again - although I might think differently when I have finished.
Sorry I’m really rambling on now, I just wanted to try and reassure you that it’s not so bad to be triple negative.
Sorry to be thick but I don’t know what the terms mean when you talk about HER2+ and triple Negs. No one has ever mentioned anything to me ( is it the response level to Ostrogen)?
Am off to GP this morning for work certificate, will he have this information from the hospital?
Hi Norma - you are not thick at all - we all have had to learn a “foreign language” when understanding our bc.
HER2 is a gene that if overexpressed can make the cells grow and divide more quickly. If HER2+ you will have the over expression, which is treated with Herceptin.
Triple negative:
ER - oestrogen hormone status. If positive you will get tamoxifen if pre-menopausal, if post menopausal Arimidex or another aromatose inhibitor.
PR - progesterone hormone status. I didn’t have this test done, so figure it is not that important.
HER2 - another hormone. If you Google HER2, you will find a lot of good information.
Hope this answers and clarifies your questions. I am not a techy, so am sure someone else will come along with better explanations.
I wouldn’t have to worry about having given up on Femara due to b…y awful side effects.
I also wouldn’t have to go every 3 weeks for Herceptin and let them continue struggling to find veins and worry whether it is just being generally weak and weary or if Herceptin has damaged my heart. My last heart scan was 3 weeks ago and assume it was OK as I had Herceptin yesterday.
Thought I was on the right track but you have clarified things for me, thanks so much.
My GP said I was 8 out 8 Oestrogen receptive but 0 out of 8 for Herceptin ( I think). He told me to write down question for the Onc when I see him._
Yes you are right I should be on Arimadex I think as I am post menopausal but and on Tamoxifen. My GP says this is a question I should ask but at the same time they tend to prescribe Tamoxifen because it has been proven over 20 years where Arimadex hasn’t. Oh Yeah? or is it cos Arimidex is more expensive!!
Marilyn
Don’t know much about Herceptin- how long do you have this. So sorry you are feeling a bit sh***y- who can blame you.
Hi C
I’m triple neg as well. Like you I had a cyst within a tumour. I don’t have any nodes involved. I finished chemo in November 2006 and rads in Jan 2007. To be honest I don’t think it’s any different being triple neg or Her2 +, I think they all kind of even out the same.
I wont let myself worry about the future or about a recurrence. If it happens at some stage then I will deal with it at that time. I am just enjoying my life now and having fun. This isnt to say I dont have dark thoughts at times, but I kind of try to give myself a kicjk and a good talking to and try to put it out of my mind… I figure after all we have been through we deserve some fun!
I am also trriple neg and had a fantastic response to chemo. I was on the neo-tango trial and had 8 rounds of chemo before surgery, which enabled me to have a WLE and ANC instead of the mastectomy they said I would have to have. I had to have the chemo first as tumour was to large to operate on. My results after surgery were fantastic as there was no evidence of cancer left in my breast or lymph nodes just scaring were the cancer had been. I also had 6 weeks of radiotherapy and am now just one year post diagnosis and yes I am worried that it may reoccur in the future but try not to dwell on it to much, I am 39 years old and have a lot of living left to do, still have a lot of bad days but try not to focus to much on them. Having a good day today.
Nice to hear a triple negative story that is positive - thanks for cheering me up. I keep hearing the bad news ones!!!
My lump has also had a great response to chemo, but I think I am still gonna choose to have bi-lat mast to reduce my risk (they think I have the duff gene too!!!).
Anyway glad you are OK and you carry on doing that ‘lots of living’ thing. I will make sure I remember how positive you are when I am having downer!
I am too Trip negative aged 24. I have had bilateral mastectomies in July and then auxiliary clearance at end July due to node involvement. I to am scared of recurrence but think i have far to much to look forward to in life. I was also told about it responding better to chemo. Think the hardest thing is people saying ’ You will be fine as they have come on such a long way with research and drugs for BC’ my response is I wish!! All the the research has been for hormone related BC. But there are ups of not having to do the hormone drugs etc. I am currently on my second dose of E -CMF TACT 2 trail. Then onto Rads after.
Must be really scaring especially having children, i don’t have any yet but thanks to be being Trip Neg i was able to go through IVF in August and froze 5 embryos with my partner. If i had been Hormone receptive i would not have been able to this and aged 24 not sure if i could have coped with that!!
I met a girl aged 28 in a shop last week who i got chatting to, she is 3 years post BC treatment and was Trip Neg, she is doing great and looks fab.
Keep your chin up and keep positive honey, that’s all we can do.
I am so glad I read this thread! It has really helped me get this into perspective.
I am triple neg too, am 42, married with two girls aged 17 and 11 - I have read so many negative things about being negative!! It’s almost like we can chuck surgery, chemo and rad’s at you, but that is about it! I have had a WLE and 16 nodes removed, 1 node with cells - results were clear margins, so due to start FEC followed by Taxotere on Tuesday (8 doses in total, get all the fun of Christmas being in the middle, at least there will be a range of santa hats I can get!).
Friends are starting to wear out the “there is so much can be done for Breast Cancer nowadays” line, and if anyone else tells me that October is Breast Cancer Awareness Month, I swear I’ll give them a PINK nose for the month!
It truly is a rollercoaster of emotion - but with the help of this forum, we can all help each other (cuz we actually no what we are talking about!) and do all our treatments, take down the “get well” cards and have a day when someone doesn’t ask you “how are you today!”.
Can read with interest your comments, I am hormone negative, is this the same as triple negative??
I also took the get well cards down just looking at them makes me feel like I am sick and at the moment I am not, just waiting for next weeks chemo after having a mastetomy. It would be good to have a day “how are you today” when no one asks or a “you look well today” I must of looked sh*t at times before treatment!!!
I also loved your comments (Karen) about the Santa hats, another good idea!!! I will also be in the middle /end during the festive period. But looking on the bright side my sister in law is doing lunch as they think I wont be up to doing it!!!
Another triple negative here. Had WLE in January, followed by 4 x Epi/8 x CMF then 15 rads plus 2 ‘boosts’ - phew! Had my last treatment last Thursday and whilst I was glad to see the back of it, it’s a bit scary being ‘on your own’ (doesn’t help that I’m full of a cold). I have remained positive all through my treatment and fully intend to remain so, this crappy disease robs us of enough so I’m damn sure it’s not going to ruin the rest of my life. I can understand how some people feel they need to change their diet, lifestyle etc. and I respect their feelings, but I am not going to let this rule my life! I am still going to enjoy a glass of wine slobbed in front of the TV with the occasional trip to the chippy thrown in for good measure - everything in moderation I say. There is hope for us all and there is no reason why we should not be here in 10yrs, 15yrs etc. So chins up (I’m not suggesting that any of you have double chins - you know what I mean) and here’s to the future!