Age at Diagnosis Poll Ponderings

[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?

[RobinP]

Please excuse me for not having the source available, but I recall reading that the estrogen receptor migrates out of the nucleus to reside in the cytoplasm in the estrogen negative state. So the receptor is still there, it just dosen't drive the cellular activity. Apparently, once her2 is switched on, the possiblity of this migration out of the nucleus is much more common than not since most her2+ are estrogen negative.

By the way folks, just a last minute thought more on this topic. I wonder if her2 can lay dormant in the body for years and then be triggered. I know that most her2s relapse the first few years after dx. so it seems unlikely that this would happen often, if at all.

[Cathya]

Hi;

This is such an interesting post! I was diagnosed in Oct 04 at 55, stage 3c, ER/PR+ (not sure how strongly as it isn't indicated on my path), tumor to supraclavicular node. I live in a small town in a rural area of Ontario along the St. Lawrence. The town is about 4000 to perhaps 5000 if you include the close rural housing. At the time of my diagnosis I knew of 2 active cases...including my friend...of IBC, another 4 ductal and one lobular (a friend who lives in the rural area but just outside of my district). I know of another her2+ who is from the town but now lives about 30 miles away. Plus there are many others since that time.....I know of about 6 who have been diagnosed since then. These are just the women I know or have heard of. There are likely others and this is not including other forms of cancer. I have heard that my area has the highest % of cancer in our province. The problem with mapping where we live is that many do not use the net. I know of only one friend with bc who uses the net to research....perhaps it's a rural thing but many of those I know really just listen to their doctors and pray....even young women. Then I think....."why and die"....an old saying I have always lived by. Perhaps our energy should just go into the question of "what do we do now?"

Cathy

[julierene]

I was told that estrogen status was a mechanism that either goes one way or the other in the early stages of the cancer development. I had both ER+ and ER- bilateral breast cancer. I kept scratching my head wondering which kind of treatment they would recommend for me. But since the ER- bc was IDC and the ER+ was DCIS, I got the ovaries removed instead of getting any of the estrogen blockers. Also, they mentioned that the ER- cancer tended to "find a way" to survive without the presence of estrogen.

[Maggie]

I'm from the Philadelphia area and I'm 63. I was diaganosed at 61. I am really surprised at the young age of most of the HER2 women as I've been reading your replies. Most interesting!

On Herceptin since November.
HER2/3+srtong... ER/PR neg. 1.2 cn.

As for older women using the internet, it would be food for thought.

Maggie

[panicked911]

I was 43 and had clean mamos for years -no family history - I live in westchester county a very affluent area 30 miles north of Manhattan - both my oncologist and radio oncologist said the bc in my age group is in" epidemic proportions" for my age group - I have 4 friends alone - same age range- that are going thru this.
scary.......

[Ora]

I was 54. I am so happy to have found this support group. I wish I had found it earlier so would know what to expect. I've learned so much here.

[SandyR]

I was 49 at age of diagnosis and live in the Seattle area...my onc says Seattle has very high rates of BC....I have no history of it in my family, I had 2 children in my twenties and my 2nd child nursed until she could say "nurse me, Mommy!" I also went for mammograms each year and they were clean.
Vicki brought up a point about Iodine deficiency...I have had a deficient thyroid for 15 years and take Synthroid. I brought up the deficiency with my onc and she said no. I also went through a period the year before my diagnosis when I was really, really low on iron....so low, I didn't get a menstrual period until my doc prescribed iron (I couldn't breathe and kept falling on the soccer field!). I always wondered if the iron being out of whack is what started the cancer. Just some thoughts.

[CLTann]

I read all contributors to this thread with care and complete objectivity. Even with such a small number of sampling, one can see that it is an enormously complex set of potential "cause" factors. These factors are very difficult to define, nevermind to standardize. How can one grade a homesite near sea shore as a valid "cause" factor? Is 50 miles near an open sea a valid criterion? Environmental exposure, this is even more difficult to describe or define. Food intake, is one steak per week acceptable or two? Then, how do you define a steak? Does hot dog or hamburger count? So many other "cause" are not even mentioned, such as type of work, level of education, social behavior, past medical history, past exposure to radiation, chemicals, carcinogens, contaminated water/air, etc. Even with hundred times more candidates and with the aid of a computer, it is highly doubtful that we can even begin to elucidate the potential "cause" factors.

One feature seems to be a valid "cause" and common in our small group of people here, that is, their family bc history. Many of us seem to have parents with bc or other types of cancer. Then one can quickly rationalize that cancers have been the major killers of people. Therefore, the linkage is certainly plausible and likely real.

One important point is the random probability of disease occurence. Look at an identical batch of laboratory mice. They were bred under great care and control with same identical genealogy. Still, there are some in the same batch that react totally differently to the same test reagents. In common language, it is pure luck (unluck) that put us in our unhappy situations.

I don't want to appear to be negative in our effort to find out more about the dreadful disease. However, our data resources are simply too limited and the eagerness and zest to generate some forms of conclusion may be rash and misleading.

Ann

[Bev]

Hi ,

I know we can't jump to conclusions from our informal discussions, but I guess we all can't help but feel, why me?

Measles and plague were once viewed as random. Maybe it is dumb luck, maybe it's getting old and falling apart.

I guess I'm hoping in this information age, that maybe we can find some commonality that would merit further study. BB

[vickie h]

I was diagnosed in 2004 with stage IIIb her2 +++ er- pr- Inflammatory Breast Cancer. Underwent 4 rounds of Taxotere/carbo plus herceptin every 3 weeks, had mastectomy w/ 19 nodes removed-4 positive at UCLA. 6 weeks later there was a new tumor above the incision. Radiation 36X, weekly taxol low dose for 5 months with herceptin. Skin rashes appeared and 33X more radiation and six months more of taxol/herceptin weekly. I now am on Avastin and Herceptin only for the past 10 months and I'm doing great (Avastin and herceptin every 2 weeks). I am now interested in Tykerb if needed , does anyone know about it? Since being diagnosed (Iam 58 today) I have met several other women newly diagnosed with her2 plus IBC. I also take large doses of vitamin C, Lysine, Proline, Taurine, as well as a balanced diet of greens and vitamins. I take 9000 mg of C and Lysine, 8000 mg of proline, 1500 mg of magnesium, vitamin D3 and calcium. I stay away from all soy products, as I was a Vegan for 25 years and lived on lots of soy. There are many studies now linking it to breast cancer. I also take 2 drops of Lugol's solution (an iodine supplement) because my Oncologist is doing research on the link between Iodine deficiency and Breast and prostate cancer. I'm happy I found this site and wish you all the best.

[Barbara2]

I was diagnosed at age 52. I'm 55 now.