Age at diagnosis comparison

[AlaskaAngel]

FYI, I will list the statistics given for age of diagnosis for all breast cancers, and then the numbers that were shown in our informal HER2 poll, as a way to better understand the extreme difference.

*During 1998-2002, 95% of new cases and 97% of breast cancer deaths occurred in women aged 40 and older.

*Among women during 1998-2002, those aged 20-24 have the lowest incidence rate, 1.3 cases per 100,000 population; women aged 75-79 have the highest incidence rate, 496.6 per 100,000. The decrease in incidence rates that occurs after age 80 may reflect lower rates of screening and incomplete detection.

*During 1998-2002, the median age at the time of breast cancer diagnosis was 61 years. This means that 50% of women who developed breast cancer were age 61 or younger and 50% were older than age 61 when diagnosed.

-From Breast Cancer Facts and Figures, 2005-2006, American Cancer Society

The results of our informal HER 2 poll:

Age 20-30 6 persons 23.5%
Age 30-40 69 persons 26.74%
Age 40-50 105 persons 40.70%
Age 50-60 66 persons 25.58%
Age 60-70 10 persons 3.88%
Age 70 and up 2 persons 0.78%

[AlaskaAngel]

When we consider many studies, I wonder just how often this "picture" of us has gone unrecognized in various studies and assumptions based on the general outcome for all breast cancer. AlaskaAngel

[Becky]

I do think that the outcome statistics we read are for all bc lumped together. Those that are Her2+ or triple negative are not looked at separately. This became evident in May, 2005 when the ASCO presentation on adjuvant Herceptin was given. As many of you know by now, I was 3 months from my last chemo at that time (so I was in the initial population of women of whom the NCI and ASCO recommended to be given Herceptin immediately (ie: 6 months or less from the last chemo tx. This was later changed to 12 months from the last chemo tx)).


Ironically, I had what was to become my first every 3 month check up so I excitedly discussed the Herceptin news with my (then) oncologist. He promptly told me that I was NOT in the population and that it was 6 months from diagnosis and I was 9 months from diagnosis. After insisting that I did not hear wrong, he still would not listen. I left with a copy of my chart and was able to secure an appointment at Sloan Kettering who told me that they were just starting the program and as long as I had my chemo records to prove when I had chemo, I would receive Herceptin.

I called my (then) onc and told him what I was doing (2 days after the diasterous appt). He then said, if I was so adamant, he would give me the Herceptin. It was then we discussed statistics (since adjuvant Herceptin improves those). He told me then that at Stage 2A and Her2+, I had a 67% 5yr disease free chance. That is significantly different than the overall statistic of 88%! And I had to drag that out of him. I ended up getting Herceptin from him (because it was close to my house versus Sloan which is not) but interviewed with his colleagues and switched to one of his partners who I think is the best doctor I have ever known.

It would be nice to understand where you stand in relation to your pathology and I think now that we (oncology) are migrating to better tumor markers to have more precise targeted therapy, they could have more precise statistics on pathologies and how those therapies are improving the odds.

Even with adjuvant Herceptin, it has not been used very long (even if you were one of the first women in the trial, it has only been 5.5 yrs) to know if it is a cure or if it just delays recurrence. We just don't have the answers yet to know if all of this improves outcome.

Secondly, with aromatase inhibitors, if you are getting them first line (meaning you did not have 5 yrs of tamoxifen first), are you done at 5 yrs versus if you took tamoxifen (which may not work well for Her2+ women) for 5 yrs then took an AI for 5 yrs. In my local support group, I know of 2 premenopausal women who finished tamoxifen and couldn't go on an AI yet because they were still premenopausal and recurred 2 yrs later (at 7 yrs). Something to be said for this. (They went to my first onc who did not recommend ovarian ablation so they could take an AI - something they should have done). These women were not Her2 (I am the only lucky one in my local group but we do have 2 triple negatives).

I am rambling on in the wrong thread for this but saw you Angel and wanted to respond.

Happy 4th of July

Becky

[AlaskaAngel]

Hi Becky,

It is hard on our end to get a good feel for just how much change there is with all the new information, as well as for just how hard it is for people in the field to decide how much to trust it when it is so new.

I can't help but feel uncomfortable just knowing that I was never told I was HER2+++, even into 2004. I wonder how many patients never know, and pay the consequences -- not because they weren't intelligent enough to be told, but because these questions aren't obvious ones.

I still believe that every last test we have (and pay for) should be required to be copied to us within a reasonable period of time. There is just too much room for stumbling around without that.

I'm really, really glad you have put in the time and effort to be proactive about your care.

A.A.

Bringing this forward. If you look at the age groups for those with highest rate of bc, the birth years are 1950's - 1970+. A major environmental factor during this time was the use of DDT. (pesticide) Research at Cornell University had indicated that for women from puberty until birth of first child are at risk of damage to breast cells from certain environmental factors.

The book 'Silent Spring' was published in 1962 describing health issues in wildlife.
In 1963 a study on newborn mice injected with 'estrogen': Results indicate that exposure to naturally occurring hormones early in life can produce harmful health effects and point to possible early life causes of cancer in adult human populations.

In 1968 DDT is shown to be estrogenic in mammals and birds.

Food for thought...

[RobinP]

Thanks for doing the stats on age of dx for the her2 board AA. I think this is very interesting data in our relatively small group as it does seem to indicate that her2 positive bc occurs frequently in young women, something that is also true in larger studies done thus far for her2+ bc. I think the younger population is subject to her2+ bc for a particular reason. I know that I have read that a hyper estrogen state stimulates the her2 state and causes the hormonal receptors to migrate outside the nucleus, and thus shut off. High levels of estrogens in young women occur during such events as pregnancy and miscarriage, not to mention possible birth control use, which is often four times more potent than a normal menstrual cycle. As for older women getting her2+ bc, I believe they may have taken HRT, been exposed to estrogen pollutants, been overweight which increases endogenous estrogens even after menopause and any other number of events, metabolic or environmental that ultimately increase endogenous estrogen.

Becky, thanks for sharing your experiences. I agree that pathology reports should to required to sent directly to patients as too much can be lost in the shuffle in the fragmented medical health care system where one patient often has several medical doctors for one condition. You really need to be your own medical advocate and case manager in such a complex system. I also think that one pathology analysis is just not enough because errors happen in pathology too and second opinions may prevent that. Correct pathology reports are especially needed when your entire treatment plan and future is relying on it. Again, aggressively managing your own health care is a must. Congratulations on your excellent example of self adovacy and success Becky. Keep at it!