Age at Diagnosis Poll Ponderings

AlaskaAngel · 06-17-2006, 10:24 AM

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 · 06-17-2006, 10:43 AM

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 · 06-17-2006, 11:54 AM

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 · 06-17-2006, 11:17 PM

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 · 06-18-2006, 12:08 AM

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 · 06-18-2006, 09:47 AM

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

julierene · 06-28-2006, 11:26 AM

Just because they know that HER2 status is slim in BRCA genetic mutations, doesn't mean you don't have a genetic mutation. Family history is definetly worth saying you have a genetic issue.

For me, I found out my family had a p53 mutation. 10 years ago, they tested the same gene, and didn't find the mutation. So just because they can't find it now, doesn't mean it isn't there.

My thoughts though, only get tested if you are trying to figure out what children you are having to monitor. The test could drastically cut your bills if you don't have to watch out for your children developing cancer. That's what we did for ours. I didn't even bother getting tested, cause we knew my daughter who developed cancer at age 5, would have my gene. So it was more of a device for my other children to see who was at risk. Just my thoughts...

Also, the whole 5-10% you see for their estimated "genetic breast cancers" I think is totally wrong. We have just scratched the surface of identifying them, so how can they give a % like that? The correct terms would probably be something more like "we have identified only 5-10% of genetic breast cancers with our current technology and understanding of the genetics behind breast cancer".

10 years ago, they told us our p53 gene was normal. What they failed to say was "with our current test, it looks like the p53 gene up to Exon 9 was normal". They failed to tell us there were more Exons to test. But back then, they didn't test past exon 9 because they didn't have a test past 9. They missed our mutation by 1 Exon. It's almost like saying, they flew to the US, landed in our city, drove to our street, knocked on 9 doors, saw a dense wooded lot at the end of the street that they couldn't get through, and decided we didn't exist. Come to find out, they just didn't have the 9th Exon mapped out - or even a test for it at that time. All we knew was that our p53 gene was apparantly OK. We didn't even know about the wooded lot - or even that there was one available to look through. So next time you think about genetics, maybe that will help knowing what I went through.