triple negative

triple negative

triple negative is anybody else triple negative, i have never spoke to anybody who is and woud be interested in what treatments they’ve had. i asked my onc whether it was unusual to be triple negative but he said not and it is mainly younger people who are. i feel that there are so many fewer options for me.

Dear victoi I am sorry that you have not received any replies as yet, the following link will take you to a thread from November 2006 which may be of interest to you:

breastcancercare.org.uk/content.php?page_id=1911&forum_cmd=24&forum_id=8&topic=6469&post
=47289#47289

Hope this is of help to you.

Kind regards
Forum Host
Breast Cancer Care

triple neg too Hello Victoi
I too am triple negative but do not think that I fit into the young age group as I was 49 when diagnosed. Fortunately for me I had clear margins after a WLE and no node involvement. My treatment consisted of surgery, chemo of FEC x6 and 6 weeks of radiotherapy.
It does concern me at times that there is now no more treatment but I have a friend who is taking tamoxifen and having problems with it. So I remind myself that at least the chemo I had hopefully got any stray cells if they had wandered off!!
Take care. Angela

Hi
I am too triple neg, was diagnosed with breast cancer 2005 and it has just come back for me 2007. have it in my lung and in my bones. Would be nice to stay in touch and see how your doing i have just started my chemo again and had rads on my back but been quiet ill with the treatment been sick for a week.

Hope to hear from you
take care
Love Lorraine

Hi all

I too am triple neg and got lung secs a year after my original diagnosis. I had taxotare for my lung secs and an operation to remove part of my lung that was 3 years ago and i have been well since then with no further treatment.

thanks for the replys, it somehow makes me feel better knowing that there are other people who are triple negative. i am currently on weekly taxol which i have been on since september, feel quite lucky because there are hardly any side effects except tiredness and hair loss!. the cancer came back twice in my breast 7 yrs after my origional diagnosis and i had chemo each time as a prevention of spread,so when i was diagnosed 1 yr ago with lung mets i felt i had already used quite a few options, knowing that chemo is the only option for triple neg is quite scarey. the mets in my lung are stable but i have another ct scan on the 12th april which i am dreading the results of.

hope to speak soon
take care
love vicky

also triple negative I’m also triple negative. 10 years after mastectomy and 4 years after a local recurrence I now have mets in bones and lungs. Bone mets being treated with radiotherapy - hip already treated and spine to be treated in 3-4 weeks time.
The lung mets I have to decide about later - whether to accept more chemo after chemo (FEC) and RT to chest wall 4 years ago.
I’ve been really interested to read people’s experiences. When you had RT to the spine, did you have any side effects? That’s my present concern.
I’m impressed that taxotere + lung surgery could give you 3 years good health so far - long may it last! I find the presence of tumours in my lungs scary as I haven’t been able to imagine any successful treatment until I read your experience. Thank-you for sharing it here.
I’m not impressed with the statistics but there are always success stories to share.
I’m feeling very well and strong and able-bodied despite the mets I have and am living an active life and enjoying it. I follow the Plant Programme, including meditation, exercise, Tai-Chi, diet, juicing etc. and feel better than I have for years.
Wishing you all well.
Jenny
p.s. It has now been proven that there is a dose response for many phytochemicals in slowing down the progress of triple negative breast cancers. If you are up to reading a scientifically technical article- Check out the link to a scientific review paper by 2 scientists at Leeds University: breast-cancer-research.com/content/6/3/119. Resvaretrols (such as in Salvestrol)and lignans (flax seeds) and genistein and other soya constituents as well as green tea suppress tumour growth whether you are ER positive or negative! and the more, the better the effect!

Hi, I’m new to the site and get confused about all the terminology I read so sorry if I sound thick but what is triple negative?

I was diagnosed with BC in October 2003, had a double mastecomy but hadn’t spread to lymph nodes so no chemo, took tamoxifen then arimidex, dignosed with lung mets in October 2006 , finished 6 cycles of Epirubicin 5 weeks ago. My BC was originally hormone reactive but not HER2 but for some reason the mets has come back as not being hormone reactive and is also not HER2. I am now on arimidex again just in case the biopsy I had missed any hormone reactive cells that might be lurking. My onc says she likes to adopt a “belt and braces” approach to these things.

I am now back at work feeling fine but looking like Hary Hill in my hairless state. I refuse to wear a wig or any other headgear and if people don’t like it that is their problm not mine.

I get the results of my post chemo scan next Wednesday, so fingers crossed that all will be well.

Luv Jan

message for jennyw Hi Jenny

Would be interested to read the Leeds research but when I followed the link it said no articles found. Any suggestions how I can find it/get to read it?

I don’t have mets…but had AC and taxotere for primary triple negative bc with a lot of node spread. Well 3.5 years after diagnosis. I think the main chemos available if I get a recurrence will be vinorelbine, capectibane and carboplatin…there is I think so little research on triple negative treatments.

best wishes to those of you triple negative going through treatments for mets…hope they get you into remission for as long as possible.

Jane

Leeds research link Hi, Jane. I’ll try again. This is the link copied from the Internet Explorer webpage address for the research - breast-cancer-research.com/content/6/3/119 Hope this works…

Wishing you never have to have chemo again!!

Stay well,

Jenny

What is triple negative? Hi, Jan.

When you have surgery for breast cancer, the tissues that are removed and tested in the laboratory for the presence or absence of 3 things - firstly Oestrogen receptors (referred to as ER) on the cells, secondly Progesterone receptors (referred to as PR) on the cells, (these receptors are the small zones on the cell surface of breast cancer cells where oestrogen and progesterone hormones can “dock” and help to feed the cancer cell’s growth cycle) and thirdly - Human Epithelial Growth Factor 2 or HER2.

In terms of treatability and survival, being Oestrogen positive is a “good thing” as there are a variety of treatments available. Being progesterone positive often goes hand in hand with this but sometimes doesn’t. Being able to manipulate your hormone status with drugs and diet which can mimic and block oestrogen reception can make it easier to treat and overcome cancer.

If you are HER2 positive, this is generally not a “good thing” as HER2 positive breast cancers are found to be more aggressive and only half of the patients who are HER2 positive benefit from the special drugs available to treat this condition, such as Herceptin. Here is the text from the Herceptin site which explains what HER2 means:

"HER2 stands for human epidermal growth factor receptor 2. HER2 is a gene that helps control how cells grow, divide and repair themselves. The HER2 gene directs the production of special proteins, called HER2 receptors.

Each healthy breast cell contains 2 copies of the HER2 gene, which helps normal cells grow. Sometimes a cell may have too many copies of the HER2 gene, which may lead to too much HER2 protein. Too much HER2 protein may play an important role in turning a normal cell into a cancer cell and in how aggressive the cancer may be.

Women with breast cancer that has too much HER2 protein on the outside of the cell (HER2 protein overexpression) may be less likely to respond to certain treatments."

So it is generally a “good thing” to be ER and or PR positive and not a “good thing” to be HER2 positive, unless you respond well to the drug Herceptin, for instance.

We triple negatives have biopsy results which show low or no oestrogen receptors or progesterone receptors on the tumour cells tested and are also normal for HER2 (HER2 negative).

This means that at the present time, the only treatments thought effective are surgery, radiotherapy and some chemotherapy and dietary inclusion of foods rich in cancer suppressing phytochemicals. These are plant food constituents which either reduce the levels of growth factors circulating in your body or promote tumour cell death or suppress the development of the blood supply to tumour cells. Examples are genistein, lignans, curcurmin and catechins and polyphenols and resveratrols.

As cancer progresses (and remember it doesn’t in many cases), the tumours that develop can change from positive to negative for oestrogen and progesterone as the growth pattern becomes more chaotic and HER2 negative can change to HER2 positive.

Wishing you well,

Jenny

message for jennyw i was reading your post regarding the plant programme, i followed it strictly for about 18 months even when i was diagnosed with lung mets, i was a bit disheartened with the secondary diagnosis but i still carried on but then somebody told me that the dairy free diet is only effective for oestrogen positive tomours so i thought whats the point! do you know whether the diet is just as effective for negative tumours?

Plant programme Hi Victoi,

I don’t believe there is any proper evidence (by this I mean controlled trials) that the Plant programme is effective for any kind of breast cancer. I think Plant herself had er+ and pr+ cancer, but personally I think her survival is due to good fortune and the fact she had chemotherapy for what was a regional recurrence.

Threads about Plant are often pretty heated on this site (and I am someone who thinks that Plant’s views can be damaging if they provoke confusion and guilt in women struggling to live with cancer) but I don’t want to provoke another storm…particularly as some women feel that following a strict diet helps them feel more in control. But the concrete evidence that any kind of diet can slow down secondary breast cancer is simply not there in my view.

Best wishes

Jane

Triple negative Hi Jan,
I know how you feel about bc terminology - it has been like learning a foreign language at times.

Triple negative means ER-, PR- and HER2-. If you are ER+ you can take tamoxifen (for pre-menopausal ladies) or Arimidex, Aromasin etc. if post-menopausal. Herceptin is precribed if you are HER2+. I don’t know anything about PR status (progesterone) as my hospital don’t do this test. I think your eostrogen status is the most important factor.
I am ER+ and HER2-, which my Oncologist said is a very grood prognosis.

Hope this helps.
Liz.

Plant programme for triple negatives Hi, Victoi.

The reason I posted the information about the review of research papers by the Leeds scientists is because it explains what works for ER-negative tumours. There is good information on dose responses for many phytochemicals and eating plant-based foods - i.e. the more of the good stuff you can eat and drink, the more you suppress the tumours. And remember that the Plant Programme is not just “no dairy” and that there are other elements involved to cut down your exposure to anything which may be able to support tumour growth - lots of synthetic materials and toxins we have in our home and kitchens will stimulate Insulin-like growth Factors (IGF-1 and IGF-2) in the same way as dairy products.
I was like you, thinking it only worked for ER-positives and didn’t follow it until I actually got hold of the book and also researched supporting and conflicting science. I switched to following the Plant Programme because there is well-founded scientific evidence for each plank of Jane Plant’s arguments. No there’s no-one invested money in testing her whole programme but each element of it has good science behind it.
Meanwhile, my docs. are delighted with my continued wellbeing and so am I, despite mets. It was the knowledge that something had spread somewhere that made me look at the Plant Programme again.
And by the way, Jane Plant’s cancer (spread to lymph nodes in the neck) are NOT considered regional recurrence but Stage IV - check out the oncological definition on www.breastcancer.org. I’m sure if her claims were untrue her oncologist would have debunked her argument long ago. She has always stressed that following her programme works best when the cancer is well and truly clobbered through conventional treatment and you have an opportunity to get ahead of it. We would all prefer to have an ER positive diagnosis, but being ER negative does not mean that dietary and lifestyle choices cannot improve out quality of life and chances of survival. I followed the Bristol Cancer Support Centre’s advice and Suzanna Olivier’s (also ER positive) and it didn’t work for me. You just have to do whatever you can to not feed the cancer cells now you’ve got them. It doesn’t matter to me HOW the cancer arose - what’s important is what you do about it now.
Wishing you well,
Jenny

Thanks Jenny Hi Jenny

Thank you so much for yor reply, everything is much clearer now. From what you say I am ER- and HER2- which I hope is a good combination. I take Arimidex as a belt and braces precauton in case the biopsy missed any ER+ cells.

Thanks again

Jan

Thanks Liz Hi Liz

From what I can understand from you and Jenny I am ER- and HER2- not sure about PR - must ask my oncologist on Wednesday. Last time I saw her she seemed to think my prognosis is good so maybe I have a good combination.

Thanks again

Jan

The Leeds research article Thanks Jenny for the link to this. You’re right…it is a highly complicated article and my own science isn’t up to understanding the finer points so I’ve concentrated in my reading on the abstract and the conclusions. My reading of the article is rather different from yours. I really don’t think you can draw from this article the conclusion that phyto oestrogens have a proven effect on triple negative tumours. This is not what the authors say at all.

The authors review the litertaure on the use of phyto osetrogens looking at short term and long term dietary intervention trials, at cell cultures, and at the impact on rodents with tumours who have been fed a phyto oestrogen rich diet.

They conclude that the data on the preventative role of phyto oestrogens is contradictory and ambiguous. They suggest that any benefit from a phyto oestrogen rich diet may be critically dependent on prior consuption of phyto oestrogens during adolescence.

In cell studies they find that phtyo oestrogen concentrations may stimulate er+ cells but not er- cells. Mammary tumours (er and pr negative) in phyto oestrogen fed rats typically develop more slowly than those on other diets.

The authors ackowledge that current data regarding self medication with phyto oestrogens by breast cancer patients is controversial. They conclude there is sufficent evidence for further clinical trials, as phyto oestrogens MAY (my capitals) prove to be promising agents for future use in cancer therapy.

This artilce was published in a peer reviewed jounral in 2004-I’ve not been able to find any peer commentary on it or anything later relating to it.

Like so much in cancer research the results are far from ‘proven’, there’s a lot of contradictory data and a long way to go before there’s anything to cheer about. (Humans with cancer often don’t respond in the same way as rats with cancer.)

Would be interested to hear anyone’s else’s reading of this article.

Jane

Really interesting! Thanks for the link Jenny, it’s the first time I’ve read anything vaguely scientific about phytoestrogens. I cook a lot from the Plant programme myself, the recipes are easy and delicious. I also juice every morning and excercise too, though meditation still evades me. I haven’t got mets, I’m Her2+++ but like to be sure to be sure in spite of the impossibility of really ensuring anything. You stay well yourself!