Age at diagnosis

Seabee

Northstar--

If they get much older than we are (I'm 66) they're less apt to be computer literate, so we probably won't see very many older women posting here--not to mention the unfortunate fact that the mortality rate increases with age.

Interesting that your Oncotype score (11) is considerably lower than mine (16), though we both were Dxed ILC and are nearly the same age.  Probably your lack of node involvement helped your score, but your tumor was a lot bigger than mine. As a result I got away with a lumpectomy, which I hope will be the last b/c I'll have to deal with. Not counting on that, of course!

JudyO

Hey Seabee....I am curious about the onc scores. I noted that you think that Northstar had a larger tumor but less nodes so that may have something to do with the difference in the scores. Also you mention the age (both post meno I suspect has a factor here). How do the number of lymph nodes and size play into this? I though the onc score had to do with the biological makeup of the tumor and nothing else. Thanks, Judy O

MimiS

Dear Nash,  I am so pleased to read of the SD  group that meets.  Is the meeting usually monthly?? Usually any specific day of the week??  I am a newbie at this...awaiting my oncodx test result...this week.  I am tentatively scheduled for a portocath insert in a week.  I was so lucky to get Dr. Parker at UCSD..hope to meet you at a group.  Warm regards, Mimis

nash

Hi, Mimi--the lunch group meets monthly on either Saturdays or Sundays. They just met this past weekend, so they probably won't meet again for a few weeks. Here's a link to the thread where they discuss where and when they will be meeting:

http://community.breastcancer.org/forum/34/topic/515971?page=56#idx_1668

I only make it to a few lunches a year b/c I'm so busy with my school age kids and their acitivities, but let me know if/when you plan to meet up with the group, and I'll try to get there. They are very welcoming of new people, and I think you would find them a good source of support. 

Seabee

The Genomic Health website gives a fairly complete explanation of what the score is based on, and it is based on genetic makeup of the tumor. 47% of the score reflects HER2 status--positive gets high scores. Hormonal sensitivity is also counts heavily. In that case positive gets a lower score.

But what they are looking for is the tendency of the tumor to spread, and which treatments seem most effective on which tumors. Since Northstar had a large tumor but no nodal involvement, I speculated that her Oncotype score would reflect that fact--not by literally counting nodes, but by the tumor's genetic tendency (or lack of one) to shed and migrate.

But Genomic does do some node counting as well, because my report includes a graph for node postives which shows different rates of recurrence for 1-3 and 4+ nodes, and the original test was exclusivley for N0. 

There's a detailed discussion of the test in one of the chemotherapy threads called "Oncotype DX Roll Call."

JudyO

Thanks Seabee...found the thread...wish they would do some testing even on the more extensive lymph nodes...it might let us know a little more where we stand...I don't like the generic online things...to general...in most cases I would think these don't reflect a true rate, be better or worse, it still would be nice to know....Judy O

33Christine

I was 38 at diagnosis.

Birth controll pills 19 years

Seabee

Judy--I doubt that there's an exact correlation between positive node count and prognosis, for one thing because the number of nodes people have varies widely. I have a lot of nodes, evidently, and the three positive ones were all sentinel nodes that were just doing their job of trapping abnormal cells. The 4+ figure becomes significant because it suggests a more advanced stage of the disease in which the sentinel node or nodes are no longer containing the stray cells. But I'm not sure there's any difference between having 4 and 10 positive nodes, or if there is a difference whether it would have any implicaitons for treatment.

Ingelein

I was 38 and premenopausal

NinaK

I just turned 50 and was just starting menopause.

KathyNSW

I was44 when diagnosed. Total shock, had mastectomy, Done chemo  (fec100 and taxotere) and

just finished radiation this week. Starting Tamoxifen next week.  ER/PR positive, HER2 negative.

Pre menapausel, haven't had a period for 3 months now and am having hot flushes, chemo

induced.Hair is starting to grow back just.I had ILC.

my560sel

I had  just turned 50 when Dx in Jan/09. No family history. I never had children. Social drinker, fit/active. I was on the B/C pill from age 21 to 31.  I finally had a hysterectomy (still have ovaries) at age 40 due to numerous ovarian fibroids. Not sure if I was in menopause since I never had any symptoms but I assume I would have fallen into meno some time after the hysterectomy? Got tested 2 years ago for hormones and my GP said my hormone levels were fine...whatever that means!

sakura73

I'm 35 and was diagnosed in January. My tumour was 90%+ positive for both ER and PR. Had to have 2 lumpectomies after the first one revealed I had multi-focal ILC and not IDC as first diagnosed. Second operation got clear margins. Chemo starts in 2 weeks, with radiation to follow. Right now I am planning to refuse Tamoxifen, though that may change.

LizM

Sakura,

 Studies have shown the ILC tumors respond better to hormone therapy than to chemo.  Since you are strongly estrogen and progesterone positive and had positive nodes I would seriously consider taking hormone therapy.  It is probably your best defense against the cancer coming back. 

nosurrender

Hi Sakura, I am adding to Sherri and Liz, your best defense is hormonal therapy against ILC.

I hope you will weigh all your options and discuss them with your onc before you decide anything.

Good luck to you,

g

Anonymous

My mom had ILC--lumpectomy, radiation and tamoxifen and is now a survivor of over 22 years without a recurrence.  I have LCIS, just finished my 5 years of tamox and am doing very well.  So , for us, tamoxifen has worked very well.

Anne