Age at Diagnosis Poll Ponderings

[AlaskaAngel]

I decided to post this again separately here as well as in the thread in the poll:

My thought is that perhaps the reason this is a younger population than that of general bc is because of the faster rate of cell replication. That would also mean that (as one other person here speculated) HER2 cancers probably don't take years to grow. That would mean that the traditional imaging intervals would be too late or too long for us -- and for those who have delayed imaging or less frequent imaging initially, a later and more dangerous diagnosis.

I was wondering about the relationship to hormonal levels and why there are older people who do end up HER2 long after normal menopause age. I know that the older we are, the more our cells get genetically confused and make a mess of things. But I am still not sure if that is enough of a reason for anyone who is older to end up being HER2....

I happen to have a strong family history of bc on both sides plus ovarian CA but tested entirely negative on BRCA 1 and 2, and in addition, although none of my family who were affected were ever tested for HER2, they were ALL over 50 at diagnosis. I'm sure there is significance to that, although I can't quite figure it all out.

AlaskaAngel

P.S. It is also interesting to note that the number of BRCA positives who are also HER2 positive is far lower than the general bc population, particularly BRCA 1. So most of us apparently are not BRCA positive...

[tousled1]

My oncologist told me that the chances of my breast cancer being geneticly inherited were extremely slim due to the HER2 status. According to her, most HER2 cancers are not genetically inherited, therefore most people with HER2 breast cancer will test negative for BRAC! and BRAC2.

P.S. I was Stage III when diagnosed and nothing other than fibrocystic disease showed up on any of my previous mamos which I had every year.

[Becky]

Hey Angel,


Its been a long time since we have written. I absolutely agree that Her2 cancers do not take a long time to grow. I was diagnosed 7 months after a clean mammogram (that didn't even have calcifications) with a 1.9 cm tumor. So, I was not surprised about its aggressive pathology. I tested negative for BRCA 1 & 2. My mom (and 3 of her sisters) had bc but the "plain old type". All diagnosed in their early 70's (one sister was 80). Small mammo detected types, node negative and highly ER/PR positive but not Her2. (I was 45 at diagnosis - your poll's most popular age range). My dad's mom and her sister died from ovarian cancer. They were both in their early sixties but I don't know anything else after that as it was over 30 yrs ago.

At ASCO, I went to all the BRCA presentations and "heritary" influence papers. BRCA 1 bc tends to be triple negative and BRCA 2 type tends to be luminal B (hormone positive but not highly positive - ie: ER 30% PR50% vs in the 70% - 95% range for Luminal A types).

Her2 is not common AT ALL in BRCA mediated cancer but being p53 positive (highly positive) is. For the record, p53 is the tumor suppressor gene.

Now for women like you and me - who have strong family ties to bc but are not BRCA 1 & 2, there is always that there may be a BRCA 3, 4, 5 etc that haven't been discovered but they also were talking about low penetrance genes (CHEK 1 and others). It was kind of a "straw that breaks the camel's back" scenario. Lots of genes come into play and together get damaged and then there is the straw that breaks the camels back. However, I did talk to one of these presenters who told me that, in the case of my mom and her sisters (no bc before them and out of 17 female cousins from my mom's sisters and brothers, I am the only one to get bc and I am in the youngest 20%) that my mom and her sisters may have an early environmental exposure that caused their bc (for example, all the ones that got bc worked in the steel mills as teenagers (another sister did too but she died of a heart attack at age 62 and since they all got it at age 70 - who knows about her and what would have happened).

I think Her2 is a spontaneous mutation that occurs but that other factors may come into play to help it along. Especially that many of us get it right when our hormones are erratic (menopause) or during or right after pregnancy (another hormone wacky time). It may be a hyper estrogen response or something (even for those that are ER negative). Just thinking out loud here.

Kind regards

Becky

[mamacze]

Hey Becky and Angel!

I am pondering as well, and my head is reminding me what the Seattle docs told me....that Her2 type cancers cluster environmently...ie, the most significant clusters are in Long Island Sound, Cape Cod and San Francisco Bay area. If this is the case, it seems like it is an environmental factor that is doing the triggering...what do you think?
Love Kim from CT

[mekasan]

Maybe we need a poll about where we are from, as well, to check for enviromental patterns. I'll set one up, if someone could direct me to where I could find the poll creating feature on the site.

[AlaskaAngel]

Becky,

I especially want to thank you for the your attendance at ASCO and for sharing ideas from the many exposures to information you took on while you were there.

My suggestion is that it might be worthwhile to consider a chat for questions and comments about ASCO, and/or another a chat about the poll.

The question of environment is interesting. There are concerns by location, but also there are concerns about the increasing broader creation of all kinds of estrogenic substances by mankind, so I don't know if we can really isolate "environmental" causes from that.

I too think there is something in your ending comment, Becky (repeated below). But there is the question I can't figure out.... What causes those long-past-menopausal-age HERs?

"I think Her2 is a spontaneous mutation that occurs but that other factors may come into play to help it along. Especially that many of us get it right when our hormones are erratic (menopause) or during or right after pregnancy (another hormone wacky time). It may be a hyper estrogen response or something (even for those that are ER negative). Just thinking out loud here."

AlaskaAngel

[Sheila]

I was diagnosed 6 mos after a clean mammogram...which I had been getting every 6 mos due to my Moms breast cancer....hers was a different type....I live in Illinois but within 20 miles of 3 different nuclear plants...who knows!

[dskdrive]

Do you think that more women 40 to 50 may use the this message board than say 50 to 80 year olds? Older women may not be as internet savy as the younger ones. Statistics still say bc strikes more women over 50. I was 51 at diagnosis and am Her2 +++.

[rinaina]

Good point dskdrive!

[R.B.]

My question.

Are these not relatively wealthy areas?.

Do they have a higher than average level of health concious exercising population?.

What proportion of that population are on "low fat" diets, subsituting staturates with polyunsaturates and margerines (trans fats), have low levels of oily fish intake (fat avoidance), low meat intake, rarely eat offal etc. The result is a large imbalance between omega threes and sixes. It is a question of balance not overall quantities.

Ironically those on poorer diets lots of meat (which contains some omega three even if grain fed and so less than times gone by, and hamburgers processed meats can contain everything including offal which is higher in threes) etc may have a slightly better omega three six balance although likely to be well outside the optimal balance, and hence the general trend.

I am not discounting other environmental factors, but am becoming more and more convinced that the imbalance of omega three and six is capable at a medical level of substantially increasing the risk of a number of cancers and medical conditions including BC.


RB

[astrid]

I also have a strong history of BC. MY sister was 37 and my grandmother was 43 when diagnose. Both died of BC. My grandmothers sister also had BC; however she was 70 when DX (still alive at 90). My sister was only 40 and my grandmother was 53 when they died. My sister was stage 1 with no lymph node involvement at initial diagnosis. She died before they were testing for HER2 status. I know she was ER+.

I also was tested for BRCA1&2 and was negative. My sister’s original status scares me. The doctors are quick to give a good prognosis if you are node negative; however a triple + diagnosis is only 15% of all breast cancer cases. I often wonder if the tamoxifen made my sister metastasize or maybe the lack of herceptin. I start tamoxfen this week as there is not another standard treatment for pre menopausal women. My doctor assures me that all the testing done where tamoxifen activates cancer cells are on animals and not human testing. As part of my work benefits, we have a research group that will research published medical journals for information and they could not find anything on tamoxifen activation.



Environmental issue may be the cause of my BC. My mother took DES when she was pregnant with me and my sister.



As far as a clean MAMO, that is definitely NOT my case. My tumor was high on my chest and not really where a MAMO caught it every time but there was a large white are on my mamos for 5 years that was never investigated until it was palatable and then it was IDC. Ihave very dense breasts so the mamos were not easy to read. I will now be more aggressive with my own mamos.



RB, I can say that while I was not overweight and did try to walk daily before I was diagnosed. I did not watch what I ate and yes, I did eat omega 6 and too much sugar, processed foods, white flours etc.

[suzan w]

I was diagnosed with a small, 7mm, tumor, ER+,PR+,Her2+...no history of bc., at age 55...factors preceding the diagnosis...STRESS+++ house was hit by hurricane in FL (Aug. 2004)while I was on vacation in WA (yes...near Seattle). Ended up moving to Seattle area in Oct. 2004. Had been on hormone replacement therapy for 7 years (dr said because of no hist. of bc, and I had been diagnosed with osteoporosis that it would be to my best interest...ha!).In Apr. 2005, when I had my first check-up with new doc here in WA, I told her of my gut feeling that HRT was a bad thing...she agreed so I stopped taking them...and scheduled the mammo that revealed the 'spot'.
An interesting note, I had a discussion not too long ago with my onc. about the prevalence of bc in Seattle area, also New England, San Fran etc. and she thought perhaps being areas of higher incomes, perhaps higher levels of education, that more women had gone the HRT route???
I was also exposed to aerial pesticide spraying as a kid in MA in the 1950's.

Just some thoughts from me on the subj!!!

[R.B.]

Re HRT interesting thought.

I suppose this would depend on the age groups.

Have regional figures been analysed by age group / type?

RB

[Rozebud]

As to BRCA testing, I had this conversation with SueF, founder of the FORCE website, and she said according to a highly respected oncologist, her2+ and BRCA1+ is rare, but the rate of BRCA2+ and her2+ is about the same as the overall rate of BRCA2. Meaning that about 20% (or whatever the number is) of all BRCA2+ are also her2+. That seems high too me as I know almost no one that is both.

[marymary]

I live in good old Marin County which is famous for it's high rate of bc.

Most of my doctors strongly believe that demographic factors are a very strong factor in our high cancer rates.

We have more advanced (time consuming) education, and hence fewer pregnancies. Many women postpone childbearing
I had only one child when I was 24. I've heard that pregnancy is protective.

We drink more. We are right next door to the wine country. I was never a big drinker but around here you're a weirdo if you don't have at least a glass of wine with friends, at dinner or possibly on Friday night.

Those are two big possible differences. I always wonder why. Sometimes it really eats away at me, is it my fault, was it something I did wrong? Or could it be environmental, was it that transformer outside my bedroom window where I grew up in Pacifica. It's hard not to know why. Could it be a combination of genetics and environment and demographics?

My nephew developed Hodgkin's Lymphoma (he is doing great!) so maybe there is some genetic component.

It's late, goodnight.

Mary

[juanita]

I am in central Indiana, farm country. I had never paid attention before, but I know in the almost 2 years since my diagnosis there have been 4 others diagnosed in this area.

[Mgarr]

I have been wondering these types of questions for some time I will try a Reader's Digest version of my family experiences & the area I live in.

Paternal

2 aunts bc deaths -1 Inflammatory deceased 54yrs old, 2nd unknown was mentally & physically impaired, Medicaid patient 1 lump removed path. said neg. for cancer a year later another lump removed family informed neg. again - deceased approx. yr. later of b.c.

Cousin, diagnosed w/ ovarian cancer before wedding at 26 yrs. Another cousin diagnosed before her wedding at 25yrs. w/ non-hodgkins lymphoma. Brother diagnosed at 23yrs. w/ non-Hodgkins lymphoma. All born w/in a year of each other at same hospital.

There is some genetic mutation (maybe environmental) at work. I have not been able to get a hold of 1 aunts records to find out if ER+ or Her+ wondering if that was tested she passed away in 1995.

I tested neg. for BRAC I & II but as the genetist indicated these are the only genes they know about or can test for right now.


Maternal

Mom diagnosed at 62 w/ ER+ bc after some years of HRT. No other noted history of bc in her family.

W/in the past 2 years there have been at least dozen women I know diagnosed; one of which was a roomate of mine.

Born & raised in Detroit.

[simimom]

I was diagnosed with IBC last year at age 52. The IBC did not show up on my mammogram. Just my luck this type of bc rarely shows on mannograms. There is no history of cancer on either sides of my parent's families (except for my dad who died from stomach cancer, which I believe was totally caused by his work environment since he worked for an aerospace company). I was raised at the northern end of the San Fernando Valley near Los Angeles. Sometimes I feel like it's just the luck of the draw! Anyway, my last Herceptin treatment was in February 2006; my chemo was over in July 2005 and my mastectomy was in November 2005. 15 nodes removed. Path report showed no sign of cancer in breast tissue or nodes. I'm cancer-free and owe it t!o Herceptin

[RobinP]

When I think back to my research some months ago concerning how her2 is stimulated, I recall that it is an excessive estrogen state that causes it via the G cycle. It's easy to see how the premenopausal women may be at a hyper-estrogen state via pregnancy, miscarriages and perhaps the pill. However, in the case of menopausal women, I wonder if there are enviromental causes such as pesticides, chemical food contaminates or even post menopausal hormonal therapy that kicks the estrogen levels in overdrive to stimulate her2. Chlordane, DDT and other chlorinated pesticides may be stored in body fat and have a cummulative impact, years later sometimes, altering the delicate hormonal estrogen balance and metabolism.

By the way, I was diagnosed a few years after a miscarriage, followed by a full-term pregnancy so I was probably in a premenpausal hyper-estrogen state. Even so, many women have pregnancies and miscarriages and don't end up with bc. So I think that I must have had ineffective pro oncogenes and tumor suppressor genes, especially since both of my grandmothers had bc and died of
it. Great prodigy, sure glad I have all boys.

[penelope]

Robin how does this hyper estrogen state account for many her2 tumors coming out estrogen negative? Curious. Have you crossed this in your research?