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Really interesting survival findings

17 REPLIES 17
Guest user
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Re: Really interesting survival findings

Thanks Tara-will read factsheet.
Gill

Guest user
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Re: Really interesting survival findings

Hi Gill,

HER2 is a protein that can affect the growth of cancer cells. Some breast cancer cells have a lot more HER2 receptors than others, this is known as over-expression. In this case, the cancer is described as being HER2+ (HER2 positive). It is thought that about 1 in 5 women diagnosed with breast cancer will have HER2-positive tumours.

We have produced a factsheet on Herceptin the drug used to treat HER2+ breast cancers which you may find helpful, I have included the link to the factsheet here, which you can download from the site

www.breastcancercare.org.uk/docs/herceptin_july06_updated_nov06_0.pdf

Best wishes

Tara

Guest user
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Re: Really interesting survival findings

Yes I'd still like to know what HER2+ is please!!! Must be something along the lines of Hormone? Receptive? Positive? No idea what the E stands for though!
Thanks
Gill x

Guest user
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Re: Really interesting survival findings

Masses of doses of chemotherpay

I think what you are probably referring to here Christine is high dose chemotherapy which was popular particularly in the USA in the late 1980s and 1990s...involved hopsitalisation and a bone marrow translant..horrible stuff...a friend of mine had it for ovarian cancer (she died). I have always been mightily glad that the evidence for it found no improved survival so by the time I got cancer I wasn't offered it. Recently though I have read that it might prolong survival for triple negative bc...decided not to read on..there are limits to the treatments I'll take. But I think I do fall in the category of 'masses of doses of ordinary chemo'...under no illusions that it's working very well but I am still here, very well, with a regional recurrence so far 4+ years later.)

Dawnhc's and blondie's stories are interesting. The time between inital diagnois and recurrence is important in survival length..and it seems from your expereinces this is the case for both her2+ and other cancers.

(Hope someone will answer gillc's question her2+ and +++..I kind of know the answewr but not well.)

Jane

blondie
Member

Re: Really interesting survival findings

Duh! I saw my Onc on 11th December and he told me he was off the next day to America for a large BC conference - this is obviously it. Won't he be impressed when I discuss some of the research papers with him! Great too for me to know he is so proactive and up-to-date.

Blondie

blondie
Member

Re: Really interesting survival findings

I was diagnosed in 1994 (the year before the findings statistics started). My cancer reoccured 9 years later (I had been on Tamoxifen only). I am HER2 positive (I don't know how many pluses - never asked, don't really want to know). I have been on Herceptin for 4 years now, just like Dawnhc, and will be having my 70th treatment on January 2nd. Still 'disease free' and feeling well but, when I saw him this month, my Onc did, gently, remind me that 'we know it will return'. Maybe - but then that is like saying 'you know we all have to die', it isn't the fact of the matter it is the timing!
Interesting discussion - thanks ChristineMH

Blondie

Guest user
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Re: Really interesting survival findings

Since I posted I have also posted on her2support and gotten some more responses from her2 women who recurred later in the era before herceptin. I finally found not only two women who were er-/pr- and had loads of nodes with late recurrence. The good news is that the women with late recurrences are doing well on trial drugs, including a tweaked version of herceptin (the patent is running out and there is nothing like a expiring patent to concentrate the mind on getting something else out of the pipeline).

Nobody knows whether herceptin buys more time or cures people, that is definitely true. The big trials in primary patients hadn't even started ten years ago. There are things that didn't look so hot (radiotherapy) that turned out to be much more beneficial in the long term, whereas some things have not stood the test of time (massive doses of chemo for breast cancer).

Longden, I meant to say that she said that when this type comes back it comes back soon. She didn't mean that it always comes back, although she held out little hope for me.

Moderator
Community Manager

Re: Really interesting survival findings

Hi Gill,

Welcome to the forums. I am sure the many informed users of this site will help to answer your questions, but in addition you may be interested in obtaining a copy of BCC's latest publication for newly diagnosed patients which is a binder full of information regarding the diagnosis of breast cancer, it's treatments and so forth.

To obtain a free copy just follow the link: http://www.breastcancercare.org.uk//content.php?page_id=7514 and a copy will be posted out to you.

You may find it helpful to give the helpline a ring, where the staff here will be able to talk to you about your diagnosis and treatment options. The number to ring is freefone 0808 800 6000, the lines are open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.

Hope this helps. Kind regards,
Emma, Moderator

Guest user
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Re: Really interesting survival findings

Hi
Can you help me out please? What is HER2+? (and why does the amount of + differ?) Sorry for my ignorance-only just been diagnosed, had mastectomy but now awaiting biopsy results so not had any further treatment yet.
Thanks
Gill

Guest user
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Re: Really interesting survival findings

Thankyou Jane,helpful as ever,Dx

Guest user
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Re: Really interesting survival findings

Hi Longden

I can''t speak for Chrsitine's breast care nurse but nothing is ever 100% in the world of cancer. She may have meant that if the cancer is going to come back it is more likely to come back in the first three years.

Remember in any case that herceptin fails for quite a lot of her2+ women. Its a fabulous drug for those it works for but it doesn't always work..cold comfort for others who are her2+++ but may help you to know.

very best wishes

Jane

Guest user
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Re: Really interesting survival findings

oh heck.....am a bit jittery I am her2+++ and cannot have herceptin due to low LVF function,I was due to have it for a year,sadly not meant to be..chemo put paid to that...and was taken aback to read Christine that your BCN said that this type of cancer ALWAYS comes back within 3 years,.....so you can see where Im coming from......fortunatly I tend to think just get on with things as best I can,I seek immediate help if am worried about anything I feel isnt quite right,have tests and phew so far so good,if it comes back so be it I will deal with it then.......but you must have been terrified with what the nurse said Christine.... best wishes to everyone....D

dawnhc
Member

Re: Really interesting survival findings

I ought to have added that I didnt have herceptin in that 6 year period - it wasnt around then. Now I have been on herceptin the last 4 years (admittedly with secondaries) but have been fine.

Dawnhc

cherub
Member

Re: Really interesting survival findings

I will be interested to read this study. I'm Her2+ and was told as soon as I was informed of the result by my oncologist that because of Herceptin she is not expecting it to return within the 5 year remission period. My last 2 appointments have been with another oncologist on the team and a few weeks ago he told me there was a low to moderate chance of it returning within 5 years, but he also gave the opinion of it not being expected. The first oncologist told me it's also possible for women who are Her2+ to go for 10 years without it coming back on account of Herceptin. Some of the Consultants on the team treating me attend the San Antonio symposium.

dawnhc
Member

Re: Really interesting survival findings

Interesting Christine! I know that statistics are just that and we all fall one side or the other. But for myself, with a particularly nasty her2+++ one, I went 6years to first recurrence.

Dawnhc

RoadRunner
Member

Re: Really interesting survival findings

Thank you for that Christine. I had heard that if it comes back it is most likely to in the first two years. Now I see that I will have to hold my breath for another year, but if I get that far the outlook is much rosier.

Guest user
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Re: Really interesting survival findings

Maybe I should have said mortality findings. I had forgotten temporarily how controversial survival is!

Guest user
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Really interesting survival findings

This just in from San Antonio: some interesting findings on survival.

A 10 year followup of 354 women diagnosed with breast cancer in 1995 found that her2- deaths occurred at pretty much a steady rate of 1-2 percent a year for the first 10 years after diagnosis, with slight variations. The pattern for patients with her2-positive primaries was completely different: the death rate peaked at 8% in the second year following diagnosis, but amazingly there were no additional deaths between four and ten years of diagnosis and the researchers in their abstract note that the disease had 'long-term event free survival,' although at 10 years her2 positive survival was still much lower than her2- survival. My breast cancer nurse told me that cancers like mine (nasty, her2-positive one) always came back in the first three years after diagnosis. Who knew that she would be on to something? These stats are from the days before herceptin.

This is from:
Non-proportional breast cancer mortality patterns according to expression of the HER2 protein, using the residual tissue repository of the National Cancer Institutes Surveillance, Epidemiology, and End Results (SEER) program.