Hi, I wonder if anybody there is in the same boat as me, I first had a lumptectomy, but when they opened they realized it was a lot bigger it was grade 3. I had to have a mastectomy after, I had 4 axillary nodes removed which were clear and they said no vascular invasion either. I was suppose to have six sectios of chemotherapy, but couldn’t have it because of other heath issues, i can’t neither have any of the other treatments as I am triple negative. Although i was very scared to have chemotherapy now I feel like I am in more danger than anybody else, is anybody there who has had the same problem as me and can give some advice about what to do to help myself psychologicaly and physicaly. Thanks
Hi jaime
I’m sorry I can’t help with your position but I just wanted to bump this up for any other Triple Negative Ladies to help you. Good Luck
Nicky
hi jamie, so sorry to hear your news, i am triple neg also and like you feel that there aren’t a lot of options out there for us. can’t they offer you radiotherapy either? i am half way through chemo at the moment, then rads after so i am very lucky to have had the full whack, i was grade 3, senitel node involvment, full node clearance, but no cacer on the full nodes.
i do worry that once this treatment is over we are just left to wait and see what happens, i realy want more answers, where did it come from, is it something i could have prevented, i just got told it was the luck of the draw!
keeep strong and stay in touch, if only talking helps this is the best place to rantxx mandy
I am triple neg too but was able to have chemo and rads after a WLE.It may be worth asking for a second opinion eg at the Marsden to see if there is a chemo regime that you could tolerate.
Good Luck
Love Vxx
Hi darl, I am t/neg too. just finished all treatment Dec 1st. I had grade 3 aggressive one node involved.
I had a mastectomy then 6 EC Chemo and 20 rads. Out there on my own now.
You didn’t say what your health issues are darl, so we cant help much.
I would go for a second opinion though.
My Onc wanted to throw all he could at it.
Please tell us more and maybe we could shed more light. xxx
Hi Jaime,
Welcome to triple neg thread and I hope you find all the answers you can. I am not in same position as you, but thought I might be able to offer you some encouragement. I was diagnosed in Jan 2007, with major lymphovascular involvement, 14 out of 21 nodes affected, and a large aggressive tumour. At the time my surgeon told me it was not worth reconstruction as I had so little chance of it not coming back!! Nice man. I did have chemo and rads, but as you say, nothing else but the waiting game. I am pleased to say that 3 years on, even with such a dire prognosis I am off to see surgeon in a fortnight to say ‘Ya boo sucks’ and can I have a new breast now please?!
So although we do hear such frightening things about triple neg, we can sometimes beat the odds, and I hope that they can at least offer you radiotherapy, maybe?
My very best wishes,
Jax
thanks everybody for your comments and encoragment, the reason i can’t have other treatment is that i have angina and a bad heart, they don’t know how this would affect the chemotherapy, the oncologist said it might be too risky without further investigation of the heart as this would take more than six months it is not worth risking it, i can’t either have the other type of chemotherapy the one doesn’t affect the heart as i had a very bad deppression a year ago it was suicidal and they are worried that that could get bad, so she thought that as have no node involvement and to them i am all cleared it was better leave it as it is, i honestly don’t know what to do.
hi, jax your comment has cheared me up a lot thought i let you know, although you wern’t in the same boat as me you had it maybe worse at the begginning, and you came out of it that gives me some hope, i am going to see my care nurse next week as many of you have said to ask for another opinion, just the same chemotherapy frightens me a lot and now that i know that one could affect my defective heart and the other my crazy head, lol, well it is a bit frightning.
I too am over 3 years past dx and counting.It is worth just talking to a different doc at one of the bc centres of excellence.I dont think chemo could be as much of a depressive as breast cancer is!!!
thanks horace, i will go monday to see the nurse and make and appointment with my own doctor, i also think that maybe if i get depression again they should be able to control it with counseling or something, the oncologist said that the steroids combination of chemo gives depression and because i was so bad with it a year ago they are worried, since then i became a christian, not because of the cancer it was before the cancer, i was a christian before but not born again christian, now i look at things different so maybe i should talk with my cancer care nurse about it, but what worries me most is that the oncologist said that even with chemo they don’t know if it would be beneficial for me.
does anybody know about diets or natural medicine to improve my chances of the cancer no returning, as you can see by the way i express myself i don’t know much about cancer, all of you seem so knowledgeble, you use initials for things and i have to look twice to know what you mean, lol, i suppose it is not a subject you want to know unless you have to.
Jamie please PM me if you want information on diet and alternative ways of dealing with cancer
Best wishes
Leadie
thanks i will PM you if you tell me what it is thanks
Hi Jamie
I’m not triple neg but er+ 8/8, aggresive grade 3 with vascular invasion, so I hope you don’t mind me “talking”. There was some question about me having chemo as I had a mytral valve (heart) prob however after lots of scans decided ok. However I had to stop after 2nd lot because of my heart reacting too bad - onc didn’t want to kill me! It worried me to begin with and I had a lot of sleepless nights but I have decided I had cancer it doesn’t have me, I will be checked at the hospital every 12 weeks and I don’t want to waste any days by sitting here thinking… if my last days are near I’m not wasting the ones I have. I had radiotherapy and because I couldn’t have the chemo I had 5 booster sessions, is there any chance you can??
I’m about to try tamox but there is a question over my body accepting that as I have had allergic reactions to everything since my re excision. I think what I’m trying to say is I’m in the same position as you… not taking anything and trying to get on with it, the sword of Damacles is hanging over me but I try to ignore it and live each day for itself!
thanks katie for your comments, they were very upbuilding and I feel now that I am not alone with this problem, I did feel a little push to one side because there was nothing else the docs could do, it is nice to know that I am not the only one. My care nurse is ringing tomorrow and hopefully we have a meeting to decide what to do next, I think that if I am checked every so often I will feel better. I am not too upset about not having chemo, it is a bit scary after listening to everybody about the side effects and the long term effects, sometimes i wonder if the cure or what it can cure is worse than the illness, it feels a bit like jumping from the frying pan into the fire, but I am a scary cat anyway, I think i didn’t feel too bad about it either because the oncologist didn’t give chemo that much importance in my case, I just feel a little abandoned by everybody, hope I feel better once I have talked with my breast care nurse.
Like you I don’t want to waste what is left of my life,sometimes I feel this has been a wake up call, and when they told me “you’ve got cancer” and I thought “oh God I am in death parole” ironically it was then I think when I started to live. I wonder how many of us felt the same.
Of course I felt angry, guilty, sad, etc etc etc but I never lost the will to live, yet a year ago before I knew anything about my cancer I tried to comit suicide because of other problems which now seem so little. Yes this has put my life in a different plane.
Hi Jaime
Just wanted to remind you that the helpline are great listeners if you need someone to talk to. They can offer great support and information if need it.
The number is 0808 800 6000 and they will be open at 9am tomorrow.
Kind regards.
Louise
Facilitator
hi Jamie
im also triple neg with grade 3, and lymphatic invasion but no nodes. i had epi-cmf chemo which is a milder chemo than usually recommended for TNBC (2nd generation chemo) as they only give the 3rd gen strong stuff with positive nodes at my unit…
however from what they said the epi is the one that can cause heart damage so perhaps you could have the even milder 1st generation chemo like CMF without the epi… its not as effective as ecmf but would prob be better than none at all… they give yiou a heart scan prior to treatment to make sure your heart is up to it in the first place… so perhaps they could do this to see if your heart is currently fit enough… and maybe you could contact your cardiologist too and ask for his advice.
they may still be able to give you radiotherapy to the breast and to the auxilla where your SNB was done.
a healthy diet, limiting alcohol and ensuring your not overweight can all help to reduce your risk of breast cancer, but they cannot prevent it… you could be super healthy and still get or super unhealthy and not get it… having a healthy lifestyle certainly wont do you any harm in terms of BC or your cardiac condition… but remember to be good to yourself too.
all the best
lulu x
Hello, I think I am going to dare to ask a very nasty question, but it has been going round my head since the beginning,in a similar case as mine: triple negative, mastectomy, all clear, no lymphs node involve, no vascular invesion,no chemo, how soon could the cancer come back anywhere? I hope never of course, but when you ask the medical team they seam to beat round the bush too much, they use medical terms too much and I myself when I am in front of them i can’t think hear or think never mind try to remember what they said. Anybody got some ideas, or anybody else knows of anybody similar to my case.
I would also like if there is anybody out there who for their own choice or the medical team choice just had surgery and nothing else. I FEEL ISOLATED LIKE I WAS OUT OF THE BIG CIRCLE.
Thanks for all your advice and support the time I have been here, it has been great help.
I dont think anyone can give an accurate answer to your question as everyone is different.What I know is that tnbc is most likely to recur in first 2 years post treatment,it is still likely for the next 2 then the likelihood begins a slow decline until by 8 years it is most unlikely to come back.
It can come back quickly[months]slowly[years]or not at all.
thanks horace that was very helpful and clear. That means that like the oncologist said I will have to look at myself properly to see any changes, I hope my care nurse explains what I have to look for because up to now I haven’t given that much importance to my body, full time work, four children, well for many years it was all go, I suppose like everybody else. I would like to know as well what are the most likely places it comes back if it is going to at the beginning, the oncologist said to watch out for changes in my breast, both sides, collar bone area and axilas, is that correct? I feel great physicaly, so unless it hurts I tend to ignore everything else and if it hurts take a couple of paracetamol and carry on, that was always my way, now i have the time to look after myself and spoilt myself but I don’t know how. I hope everything goes ok for you,for now and the future. love Jaime, my real name is josie but it wouldn’t accept me with that name, somebody else has got it so i put my partners name instead, men are useful for something lol