Age at Diagnosis Poll Ponderings

[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

[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

[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.

[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.......

[julierene]

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.

[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.

[vickie h]

Hi Sandy, Hope you are doing well. My oNCOLOGIST IS DOING MAJOR STUDIES ON iODINE DEFICIENCY AND BREAST CANCER (AS WELL AS PROSTATE). SO ARE MANY PROMINENT ONCOLOGISTS. IT'S A SHAME TOO MANY ONCS DON'T NOW ABOUT IT YET. I FIND I HAVE TO DO ALOT OF SAVING MY LIFE ON MY OWN. I JUST LUCKED OUT AND GOT A TOP ONC WHO BELIEVES IN DOING ALL SHE CAN WITH ALTERNATIVES AS WELL AS CHEMO. SHE IS FROM JAPAN AND SAYS JAPANESE PEOPLE ARE NOT GETTING CANCER BECAUSE OF THE HIGH DOSES OF IODINE IN THEIR DAILY DIET. OURS IS ONE TENTH THE AMOUNT THEY CONSUME AND SALT JUST DOESN'T DO IT. THERE IS A LAB IN NORTH CAROLINA (THE ONLY ONE IN THE US) THAT TESTS YOUR URINE FOR IODINE CONTENT AND WETHER YOUR BODY IS UTILIZING THE IODINE IT DOES RECEIVE. MY ONC SAYS EVERY SINGLE WOMaN OUT OF THE 1,300 SHE HAS TESTED, WITH BC, HAS BEEN EXTREMEMLY DEGICIENT IN IODINE. IT IS SOMETHING TO CHECK OUT AND DEFINITELY CUTTING EDGE. IF YOUR ONC SAYS NO, I WOULD GO OUT ON MY OWN AND RESEARCH IT. BEST OF WISHES TO YOU ALL, YOU ARE IN MY PRAYERS. LOVE, VICKIE

[Mary Anne in TX]

Hello to all!

I was dx in Dec. '05 (turned 61 2 weeks later) with grade II/III invasive ductal type, HIgh grade ductal in-situ, Her2+++, ER-, PR-

Port - Jan. 18 '06

Jan. 23 Taxotere, Adriamycin X three. Tumor grew and spread.

Modified Radical Mastectomy right side on Ap. 10, '06. 7 of 9 nodes involved.

May 5 '06 - Taxol, Carboplatin, Herceptin every two weeks for 8 cycles

then Navelbine + Herceptin for 8 cycles

then rads for 6 weeks + herceptin

then herceptin for 6 more months

One aunt with bc, one aunt with stomach ca - both my mom's sisters.

I took estrogen for 2 years 55 - 57 to try to avoid getting Progresive Supra-nuclear palsy which one aunt, grandmother, and mother died from.

Eating not great but not aweful. Stress extremely high age 50 - 60 (mom diagnosed, brother died of massive stroke (alcoholic), husband's heart attack, son on drugs/alcohol, etc - you know the normal stuff!) Live in San Antonio area. Grew up near Houston.

Luv this site!
ma

[SandyR]

Thanks Vicki, I will try to research the iodine issue...this running commentary of everyone's thoughts and history has been so interesting! Thanks to everyone for contributing. I wonder how many polls we could set up and find things to link us all.....thanks to everyone!

[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.

[Bev]

Hi Sandy, I too have been seriously anemic for likely 10 years. Anytime it showed up I would do 6 wks of iron supplements. No one really followed up on it. I don't know if it's a cause but maybe a symptom. I had heavy periods which probably caused the anemia. I do think that the heavy periods were from estrogen gone wild. I think there's something ther, but so much to study and so little time. BB

[RobinP]

Classic cases of iodine deficiency were manifested as goiter many years ago. To prevent this condition, the additive iodine was manufactured in salt to help prevent goiter as most people used table salt.Consequently, goiter is rare today and I would imagine most other iodine deficiencies states contributing to ailments, ig any bc correlations.

[lkc Gumby]

Hi All,

I was dxed June 05 with Stage IIIC er/pr negative, Her +++, 12/14 pos nodes at age 50.( pre-menapausal )
Did Right mast. 4 DD AC, 4 Taxotere with Herceptin ( still on herceptin) and 7 wks Rads.
Mom dxed with BC 24 yrs ago had reccurrence in liver and passed away at age 79 , two and one hlf yrs ago, her only sister died of BC in her mid 60s, and their mom ( my mat. grandmother died of BC in her 70s.
I have 2 sisters, 1 tested neg, 1 did not test, and I have decided not to test
for the braca gene.
I really believe (as another poster indicated) that there are breast cancer genes out there that have not been discovered,
My family hx is strong, but does not fit the profile for braca positive.
I lived my whole life in NJ ( summers often at Long Island Sound ( but moved to Nassau in 1999.
I was up to date on my mammos,and know that my palpable breast cancer did literally pop up quickly.
Interesting, I am 3 weeks out from a propylactive left mastectomy, with a neg MRI 6 mos ago, and no palpable lump.
However, my pathology showed major aytpia, and hyperplasia, (intraductal and lobular)
I had very fibrocystic breasts, had one child at age 19. Exercised and ate well.moderate alcohol, no smoking
No health problems at all before this.
Backround in nursing ( first job was working for an oncologist! )
Anway, I think there is definitely triggers that makes those lurking bad cells replicate. Could be environmental. I am thinking more and more it is viral, some of us are more susceptible. No science here, just my thoughts meandering.

Take care ladies, and God Bless.

Linda

[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