Just want a bit of advice, have just read another thread a lot about avastin (which I know nothing about) and a lot about triple neg BC which I have and it has worried me to death, is their any hope if you are triple neg, especially if you get secondaries or possible have them? Are there any positive stories out there.
Also just about to start Tax on Mon, using the cold cap and so far hair not to bad but did anyone lose it anyway on tax or lashes, eyebrows etc.
Very worried, like you all have a lot of living left to do especially for 2 little babies.
Sorry the bit I meant by if you were me is would any of you have a double mastectomy just to increase chances of survival, I have had lumps removed and all lymph’s in left, would you???And if so before the start of reds my onc nurse said if I really wanted to they would have to do it.
hi there
All i can say is when i was diagnosed with bc in june it was grade 3 agressive, spread to my lymph nodes and her+ , i read all sorts about her 2, grade 3. and terrified myself, i am 37 , 2 young childen, i have gone through chemo and surgery and have rads in january and 1 year of herceptin . Last night i got the results back from my op and they cannot find any traces of cancer !! in any of the tissue they removed,i felt so much better when i didnt look to much into other stories as we are all different !! my gp came to see me and gave me this advice, the girls who continue to live as normal as possible and get on with it are the ones that do the best, i took this advice and it does help yoiu, i dont know if this is any help to you or its just waffle !!
love galenx
Thank you galen of course it was not a waffle and anyway I like to anyway or did be4 this horrible disease took over every thought. I do try and carry on as normal as possible as you know with little ones it is hard not to, how old are yours? By the op do you mean you had a mastectomy? Your GP sounds a bit like mine lets hope they are right.
Thank you wishing you and your family a very happy Christmas and a much healthier and happy new year.
hiya
phoebe 3 and cameron 7 , they are so excited over christmas , mind you im as bad this time of year !! i had all my lymph nodes removed and a lumpectamy, i didnt need a masectamy because the chemo shrunk my lump so well,but i asked for a masectamy and my surgeon said i would have no benefit whatsoever. i have had days when i did wonder how long i had left and ended up heartbroken when i looked at the children and my hubby, it is easier said than done to be positive and its a word i get a bit sick of hearing but over this last few days i am determined to do what my gp said, he is so lovely , if i ring for anything he comes round to see me,we are only human and bound to get scared, i also lost my hair and eyebrows it was really hard at 1st but i bought some lovely headgear and sort of got used to it, it is growing back quite strange it looks grey !! how old are yours ( i call mine little ones still and they are not really they are growing too quickly !!)
galen x
I was diagnosed with Grade 3 triple neg BC last December. I had 6 months of chemo and 3 weeks of rads and am currently doing ok. When I went to see the Onc she examined me and said that, as far as they are concerned, when they did my lumpectomy, they got all of it out and the lymph nodes were all clear. In view of this, and the fact that I ‘responded’ well to the treatment, they were happy to discharge me. I was a bit worried about this until the BC nurse pointed out that the Onc deals with cancer (‘which you don’t have’), chemo (‘which you don’t need’) and hormone treatments (‘which you don’t need’), so I suppose it makes sense. It is very scary not having a safety net but I am quite upbeat and positive. I work with someone who was diagnosed triple neg 5 years ago and she is fine. I look at it this way, I could spend the next few years worrying about it coming back and if it doesn’t, I would never get those years back, so what’s the point? I know it’s easy to say and I do sometimes have a little ‘blip’, but there’s nothing I, or anyone else, can do, so I just try and enjoy my life. I should be going back to work at the end of January and am hoping it brings some normality (whatever that is lol) back into my life.
I have 3 sons (23, 19 and 10) and am determined to see my youngest grow up.
hi zjlove
i was dx with bc left breast at 29yrs, lumpectomy, nodes, chemo & rads, grade 3 triple neg. 7 years later dx again right breast also grade 3 triple neg, new primary & a mirror image of the first, finished chemo in July. Yes i did have a bilateral in the end (as it was all a bit of a c**ck up) this was to reduce my chances of a recurrence or another primary. I did not have reconstruction at the time, but i am hopefully in he new year. I am also being tested for family genetics and i have just received a letter for ovarian screening, although i intend to have them out asap (i started the menopause 5 yrs ago). I intend to do everything i can to stop this bl***y cancer coming back.
Louise x
Hi Galen,
I hope you don’t mind me saying this and please don’t take it the wrong way as I don’t mean to be unkind but your GP’s advice is really only advice on quality of life…
I don’t think that having a ‘positive mental attitude’ will have any bearing on a persons prognosis and I’m not sure how helpful a comment it is.
For example if someone doesn’t “live as normal a life as possible and get on with it” and gets disease progression…is that then their fault…I don’t think so.
I’m a qualified nurse and have a very clinical view of my own disease…I was given a poor prognosis and this has nothing to do with having a positive attitude or not but everything to do with a lot of lymph node involvement…I’ve had all the treatment they’ve recommended and now it really is in the lap of the gods.
Best wishes
Claire
galen my little ones are 1 (on wed gone) and 2, very close together and a real handful but lovely and the reason that we will get over this, as they write in the daily mail today 64 out of 100 women will live to 20 yrs plus after being diagnosed with BC and I fully intend to be in that 64 percent. How many lymph nodes did you have involved?
I think I will push for a mastectomy as being triple neg am worried that have no other treatment options after rads and chemo.
Thanks again to all
Just been reading the post again and noticed that zjlove said she was worried to death about what she read re triple negs. It was fab of you galen to try and reassure her and telling her what your doctor said about staying positive. She asked specifically if there were any positive stories and, even though I am only 1 year post dx, I tried to reassure her that there are some triple negs out there after 5+ years. I’m sorry Claire, but I was a little upset by your post. In my eyes, galen’s doctor was trying to reassure her and when someone is so obviously scared then they need reassurance and optimism (I know I did). Whether it’s true or not, if someone tells you something positive, you cling on to that and it makes you feel better. Being triple neg is a VERY scary thing and we need all the positive stories and reassurance that we can get. If we are being naive or ignorant (as someone once said) then that is our choice and if we want to believe that staying positive helps, that, again, is our choice. If someone tells us different, it can turn us from being upbeat and positive into miserable and frightened and I don’t want to spend the rest of my life like that. So galen, if you think staying positive will help you, then go for it - works for me!
Everyone’s circumstances are different but I chose to have a double mx after diagnosis at age 35 with a 12mm tumour on one side (that turned out to be 3cm). It was pretty much an instantaneous decision as soon as they had given me the bad news and offered either mx or WLE. They then offered me a reconstruction as well which I accepted and am currently part-way through that process. They put in tissue expanders at the time of the initial surgery and eventually they’ll be replaced with implants. It wasn’t really a difficult decision for me so I would say go with your instincts. What is right for one person isn’t necessarily right for another.
However, what I would add is that I’ve never had a single regret even though the other side was confirmed by pathology to be disease-free. I didn’t personally feel that one off was much different to two off (having the op done at the same time, I mean). The two rather artificial mounds that I presently have are not ideal but they are a work in progress, look fine under clothes and I have got used to them much more than I thought would be the case.
My background to this decision was that there was a strong family history, we’re waiting at the moment for genetic results for me (to help my sister decide what to do) and I’d always suspected since I was 13 that my breasts were a hazard to me, having lost my mum to bc when I was just turned a teenager. My two boys are only 4 and 7 and I have a lot of living left to do that doesn’t require intact boobs.
I hope you come to a decision that is right for you. Maybe a talk to your doctor/oncologist about the actual risks for you? My risks were pretty high and that was the main factor in my decision.
Thanks Claire for your post. I’ve also always had quite a clinical view of my own disaese…poor prognosis because of having 23 nodes with cancer (that more significant than also being triple negative.) I’d love to say I’m going to do everything to ‘beat’ my disease or that I intend to live to an old age…but both are sinmply not the case. All the wishing in the world won’t affect my cancer and its progression.
zjlove…there are many good news stories on triple negative breast cancer. One is that if you don’t get a recurrence in the first five years then you are much less likley to get one later.
We all find different ways of living with cancer. One idea which really relates to my stance is something the psychologist said on the recent mummy diaries programme. She described women with secondaries living their lives on parallel roads: one road is utterly realistic about the death they are facing; the other is a road of hope, hoping for the best that is possible at each stage.
I’m hovering on the brink of secondaries (an unusal regional recurrence which is incurable though no spread to major organs). I live my life best I can on those paralllel roads…not easy but better for me than false optimism which isn’t really hope at all.
best wishes to all…having cancer is just damn scary.
Julie,
It’s not my intention to upset anyone. My post has nothing to do with being triple neg… indeed Galen isn’t triple neg but her2+… but everything to do with cancer being an unpredictable disease.
I believe that having a positive outlook makes the quality of day to day living better but I’ve seen no evidence that it makes a differance to outcome and if you get progression have you somehow failed because you weren’t positive enough?
There are many good news stories here…many people defying statistics and I hope to be one of them but I don’t believe it’s down to living normally and getting on with it as Galens GP would have us believe.
Jane is right…having cancer is damn scary.
Best wishes
Claire
Well, Galen’s GP just said “do best” which could mean “have the best quality of life” not necessarily “have least chance of recurrence or progression”. I’m with you, skimum, that a positive outlook doesn’t affect your disease in the slightest (in fact there is scientific evidence that it doesn’t), and that being told that it does could make you feel guilty; but of course a positive outlook definitely does affect your quality of life. So everyone’s right!
Thank you all for your positive feedback, I really did not want to start a debate on whether being positive makes you more likely to survive this fearsome disease whether that means quantity or quality of life. I personally think that if you think being positive will help then that alone is good cause to be so.
What I did want to know and thank those that have shared their experience is that there is a glimmer of hope that being triple negative is not all bad, I have not been able to source much information that does not scare me and just wanted to know if any ladies out there were or have been in the same situation about making a decision.
Maybe we should ask if we could have a triple neg thread to source info?
Thanks again
good mornng c
sorry i didnt respond to your question i had 2 lymph nodes involved, if you dont mind me asking how old are you ? good luck with chemo on monday i will b thinking about you please let me know how you get on
love galen x
Galen I do appreciate that your GP was trying to be supportive.
I’m just sooooooo fed up with people saying to me about being positive…I know they mean well but it just drives me mad.
I’ve never read any research that says that having a PMA makes any differance to disease outcome…so why do people insist on telling me to be positive!
What I am is realistic.
Claire
hi claire
everybody deals with their diagnosis in a different way, and we are all entitled to an opinion, i dont get annoyed with people telling me to stay strong and be positive i feel my pma has helped me through my treatments but that is my opinion and i dont rely on research as its not all cut and dried
galen