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18 year mets survivor!

29 REPLIES 29
Lolag
Member

Re: 18 year mets survivor!

Cb102

The website I read this on is www.youngsurvival.org

I'm afraid I don't know any more than I've said about these cases.

Love to you all

Lola x

ForumMember
Member

Re: 18 year mets survivor!

Hi Dawn and Jane

Dawn - glad it gave you a lift - we all need those from time to time!

Jane - I don't think you're a wimp at all about feeling ill because we all know what this means - it's not just a cold or something like that. I agree with you that the worry of breast cancer is always there, I've yet to met anyone who has mets who can put it to the back of their mind all the time but I still want to enjoy myself and feel 'normal' and forget that I've got it and I can do that at times when I'm with other people. I think the hardest time is when I'm by myself and my mind can work overtime! If I start feeling like that I try to think about something else so that I don't dwell too long on it.

I'm tolerating xeloda well like you are - I just hope I can be on it for quite a while as I've been on it for a year now without it presenting too much of a problem for me but that's because I'm on a lowish dose so don't have a lot of the problems with my hands and feet.

Keep your pecker up Jane! It's not always easy is it?

Pinkdove

JaneRA
Member

Re: 18 year mets survivor!

I think you are so right pinkdove that its easier to live well when we are actually feeling well. I've found each bout of chemo I've had so debilitating..I am a wimp about feeling ill..and find it really hard to stay cheery when I'm physically unwell. When I feel OK as I do at the moment the worry of breast cancer is still there but doesn't feel so terrible.

I dread the thought of more chemo (am still on xeloda and that's tolerable.) and really am not sure if I will take it...expect I will because I know we can never tell which drug might just do the trick for a significant period of time.

I'm sorry if some find my posts depressing...for me holiding the good and the bad simultaneously is the only way forward...though as Dahlia said earlier in this thread being realistic is not comfortable.

Jane

dm1968
Member

Re: 18 year mets survivor!

Pinkdove

Thank you for your post. When I read some of the negative ones it makes me so depressed again and think my time is more limited than I want. To read you have been 3 years now with mets (and it being your liver) has lifted my spirits right now, and given me hope that I may have longer than 3 years.

Love
Dawn
x

ForumMember
Member

Re: 18 year mets survivor!

Hi Jane and Belinda

I wholeheartedly agree with your comments Jane about the inference that you'll be okay if you stay positive, etc. Last year my liver mets were so bad that my oncologist actually told me that I had to get my affairs in order. There was absolutely no way that I could drag myself up from the position I was in because I felt so ill. However, what has turned me around is the fact that my oncologist said I could try capecitabine but that, given the state of my liver, she wasn't sure that it would work. Well, it has and I don't believe it has anything to do with me 'fighting' it because I've always been more on the positive side rather than negative.

I had a very close friend who 'fought' so hard and was positive and all that stuff but it didn't make any difference to her outcome and sadly she did in September. But I think she knew the odds were stacked against her because every treatment she tried she had a really bad reaction to and ended up having to stop each one.

I'm 3 years living with mets now and I hope to live quite a few more but as you say Belinda we don't know how long we have to live but while I feel relatively well it's so much easier to enjoy life (not the same when you're feeling really poorly as I know only too well).

Long may it continue for all of us!

Pinkdove

belinda
Member

Re: 18 year mets survivor!

I've found a lot of this October's debate has made me take stock. I don't know how long I will live but I'm now trying to find the best way, for me, to go forward and live out however much time I have left.
I had 2 friends who lived 3 years from their mets diagnosis. For 2 of their 3 years they lived well, their diagnosis was not all consumming which is something I feel I have let my diagnosis become to me in the past.
Belinda.

JaneRA
Member

Re: 18 year mets survivor!

I usually find the conferences on breastcancer.org very informative and useful. But this one got right up my nose. (Though a bit of useful info that taking xeloda 7 days on 7 days off rather than the UK norm of 14 days on 7 days off may minimise side effects).

Back to my rant: one of the doctors answering questions is one Larry Norton M.D. He may be a good oncologist but he's got some pretty dodgy ideas on that old chestnut about fighting. He says: "I've noticed over the many decades I've done this that expecting to do well often leads to doing well. Visualising a happy future often leads to a happy future. The only way that you can guarantee that you're going to do poorly is to stop fighting"

I really object to this completely unsubtantiated notion that those who 'fight' their cancer somehow do better. This is such moral disapproval. What does it say about those who die? That somehow they didn't 'fight' hard enough or long enough? Such attitudes help no one..they certainly help me to feel inadequate. As Alan Bennett said about having cancer, I've never been able to summon up the frenetic energy necessary to 'fight' cancer.

Dr Norton reckons also that 'there is never a last drug available' which rather denies the reality that drugs fail for the people who die (who perhaps its because they stop 'fighting'?). Sometimes cancer progresses so quickly that drugs simply don't and can't control the cancer. He says "we have dozens of effective drugs" Dozens? Implies 30 or 40 at least??? Don't see them on the NHS.

I am all for hope but 'true hope has no room for delusion' (Jerome Groopman: The Anatomy of Hope).

Jane

cb102
Member

Re: 18 year mets survivor!

Thanks Jenny, thats helped me too

Jennywren
Member

Re: 18 year mets survivor!

Hi there,

Whereas many breast cancers are fuelled by oestrogen (ER+) progesterone (PR+) or over-produce the Her-2 protein (Her-2+), triple negative breast cancers are not affected by any of these factors, so tamoxifen or aromatase inhibitors (hormonal treatments) are of no benefit to people with triple negative cancer.

The American sites to look at are http://www.bcmets.org or http://www.breastcancer.org.

Jenny
x

cb102
Member

Re: 18 year mets survivor!

Hi Lolag, or anyone that can help

You mention an American website, what is it please.
Carol.

Hi Mills
That's a good question, I didn't pick up on this triple negative until I joined this forum. Its to do with receptors for cancer treatment, I am going to let someone else explain because to be honest I am still a little confused as to the consequences.

Carol

ForumMember
Member

Re: 18 year mets survivor!

I am confused, what is triple negative and its consequences
Mills

Deirdre
Member

Re: 18 year mets survivor!

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

Dahlia
Member

Re: 18 year mets survivor!

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:

http://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

belinda
Member

Re: 18 year mets survivor!

Hi Tracy, I read this too.
here's the link, worth a read. http://www.breastcancer.org/symptoms/recur_metast/conf_2007_10/index.jsp

tracy1964
Member

Re: 18 year mets survivor!

look up breastcancer.org . US site that has some positive news under metasatic thread and conference news .

Deirdre
Member

Re: 18 year mets survivor!

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.

Jennywren
Member

Re: 18 year mets survivor!

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

loolu
Member

Re: 18 year mets survivor!

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.

Jennywren
Member

Re: 18 year mets survivor!

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

belinda
Member

Re: 18 year mets survivor!

I don't think I will live all that long either but I still like to hear others have done so.

tracy1964
Member

Re: 18 year mets survivor!

i am one who needs to read the positive stuff only at the moment !!!

hugs again Tracy

tracy1964
Member

Re: 18 year mets survivor!

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

JaneRA
Member

Re: 18 year mets survivor!

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

Deirdre
Member

Re: 18 year mets survivor!

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.

JaneRA
Member

Re: 18 year mets survivor!

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

Holeybones
Member

Re: 18 year mets survivor!

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.

dm1968
Member

Re: 18 year mets survivor!

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

Jennywren
Member

Re: 18 year mets survivor!

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

belinda
Member

Re: 18 year mets survivor!

Hi Lolag..thanks for posting this..I love hearing some of us are doing well years and years later.
Belinda...xxx

Lolag
Member

18 year mets survivor!

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.