Hi girls.
I post on an American breast cancer site and one of the girls there was at a function and met an 18-year and a 17-year mets survivor. They both have bone and lung secondaries and these are the timeframes from diagnosis of metastases, not primary bc.
One of the ladies is a lawyer, now in her 50s or 60s, and is still practicing.
Hi Lolag…thanks for posting this…I love hearing some of us are doing well years and years later.
Belinda…xxx
Well, thank you so much for posting this. As I was only just saying to someone on these boards, we really need messages of hope like this. I know not many of us will survive this length of time but any stories of this nature are so welcome. Anyone else know of any inspirational persons doing so well after long periods of time?
Jenny
x
Thank you for posting such lovely information, as Jenny says, gives us hope for the future that we may outdo stats and live for longer than people say … I have liver mets but wanna be around for another 20 years (think that might not be the case) as my babies are only 3 and 11 months!!
We need more stories like this to give us hope and determination … so anyone else out there with lovely news, please do post.
Take care
Love
Dawn
x
Lolag,
Sorry to say, I have absolutely no expectation of living that long, no matter how many stories of I hear of long-term survivors who fall outside the usual survival distribution curve.
We start off with a number of lifelines like hormone treatments and chemotherapies and gradually use them up. I’ve been wondering if most of these long-term survivors are Oestrogen receptor negative (ER-) hence there was no oestrogen problem to contend with? These new hormone treatments like Arimidex, Femara and Aromasin weren’t around at the time of their diagnosis.
So do you know their receptor status and what is / has keeping their mets under control?
I’m ER+ but no longer respond to hormone treatments, so believe I’m now in a worse position than someone ER-
Just want to know if there is some great secret how they last and hope it isn’t attributed to Essiac Tea or something else I consider cranky.
Apologies again for my pessimism.
Holey.
I agree with some of what you say Holeybones.
Yes its good to hear stories of long time survivors but these people just represent the far end of the statistical bell curve. Most people don’t live that long with mets. Average survival according to Susan Love is between 2 and 3 and half years. Great some people live a lot longer, but s*** that some live a lot less.
I disagree with you Holey about er- and pr-. I have heard of very few long time triple negative survivors of secondary breast cancer. (Actually I’m not sure I’ve heard of any?).
Cancer is very unpredictable. Some people have relatively ‘indolent’ cancers which respond well to treatments. Others have cancers which mutate rapidly and soon use up all the treatments.
I think somehow we have to live with good news and the bad news stories and hold both in our hands as possibilities.
Jane
I read those stories too on the bcmets site. And at the Westminster conference last Wednesday I spoke to the chair of BCC who told me of a woman she knew who had lung mets for fifteen years - long before modern treatments were around.
Holley - like you, I think being ER positive is really cr*ppy if you don’t respond to hormone treatment. I am now on my third line of hormonals after tamoxifen and arimidex failed me and I have mets to my spine. I wonder whether it would have been better for me had I been triple negative - at least then I would have had chemo following my recurrence last year and maybe kicked my cancer into touch while I was still at the primary stage. Instead I was put onto a hormonal that was a) going to take a few months to kick in, therefore giving my cancer a window of opportunity and b) not going to work anyway.
Hindsight, though, is a great thing, isn’t it?
Deirdre
PS - having said all that, I still put my optimistic hat on most days and by reading all the good stories I remind myself that nothing is definite in this world, and that therefore everything is possible.
I certainly don’t want to imply that having triple negative bc is ‘worse’ than having an er positive cancer which fails to respond to treatment.
As I said cancer can be very unpredictable and some cancers just fail to respond, while others might suddenly respond to one particular drug and no one quite knows why.
At the moment I’m very aware of how quickly the disease can progress for her2 positive women who fail to respond to herceptin.
Jane
hi , this is all so scarey , i am hoping new treatments may be round the corner for us all and sometimes this is what i hang on to .
seems my er pos is not responding to hormonals in the liver so have just started taxotere and capcetiobine. and i have loads of bone
aches already and an acid throat . i get so worried when i think what happens when this chemo ends and then what ? sometimes
i feel so positive , other times i read stuff and i just feel i cant cope .
hugs Tracyxx
i am one who needs to read the positive stuff only at the moment !!!
hugs again Tracy
I don’t think I will live all that long either but I still like to hear others have done so.
I think only about 30% of ER+ breast cancers respond well to hormonal drugs (puts me in the 70% bracket) and I read on some American website that their ‘worst case scenarios’ were ER+ cancers that didn’t respond to hormonals. So we may as well be triple neg. Keep putting on my optimistic hat too, but it has a nasty habit of slipping off.
Jenny
x
HI , MY MATERNAL AUNT HAD BILATERAL MASTECTOMIES IN HER FORTIES SHE ALSO HAD LYMPH CLEARANCE, LATER ON HAD A HYSTERECTOMY SHE IS NOW 85YRS OLD AND WELL, HER DAUGHTER ALSO HAD BREAST CANCER AT 45 SHE HAD MASTECTOMY AND IS NOW65 AND IN GOOD HEALTH THEY BOTH PUT IT DOWN TO BEING VEGETARIANS! I MYSELF HAVE RECENTLY HAD WLE AND SENTINEL NODE SAMPLING ,I AM ON TAMOXIFEN AND AWAITING RADS.
Hi Loolu,
It sounds as though your aunt does not have secondary breast cancer (as we do). We are looking for examples of women who have lived a long time with secondaries.
I am glad to hear how well they are!
Jenny
x
I think the stats show that hormones work for about seventy percent of women as regards holding off secondaries, but I am not sure about the stats once you have got secondaries. I suspect that most ER positive women are already on hormonals when they are diagnosed with secondaries, so they are probably going to be less effective anyway. The bcmets site has a very scary recent post which includes the results of a survey that shows that ER positive women who don’t respond to hormones tend to have a faster time to recurrence that ER negative. Now I am in a new, depressing, minority. Wish I hadn’t read it now.
Deirdre
Sorry, that’s not good news at all, is it? If you are after good news only, don’t go there.
look up breastcancer.org . US site that has some positive news under metasatic thread and conference news .
Hi Tracy, I read this too.
here’s the link, worth a read. breastcancer.org/symptoms/recur_metast/conf_2007_10/index.jsp
This may not be the perfect thread to place this but I have only just in the last hour read “The Median Isn’t The Message” by Stephen Jay Gould. I’d been meaning to read it for a while as it was referenced in Musa Mayer’s “After Breast Cancer”, anyway, here si the URL, it is well worth a read and gives some hope:
cancerguide.org/median_not_msg.html
It’s nice to hear/read of people bucking the trend but we also need to be realistic and that’s not comfortable is it?
D
There is lots of food for thought on breastcancer.org. I especially like the doctor who says that there are always loads of different treatments to try. Optimistic hat back on now.
Deirdre
I am confused, what is triple negative and its consequences
Mills