Poll - How old were you when dx with BC
Comments
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50 with first dx. 56 when gone mets...Liver & Bones. Family history with breast cancer, mother's father's side. Daughter will start mammo next year as she will be 30, highly recommended by my breast surgeon and Oncologist.
Landdownunder
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Age 40
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This is a fascinating post. I was just diagnosed at 40. I am BRCA2+. My mother was 34, and her sister was 42 (it was not until I was diagnosed that I learned she was 42- I had always thought she was post- menopausal).
Anyway, I am interested in how many women who were younger than 40 had a family history and whether the BRCA test had been recommended prior to your diagnosis. Even with my positive BRCA2 test, my DCIS diagnosis, and out mother and aunt's BC, my sister's ob/gym office was completely clueless in how to get her tested. They still haven't figured out how to ask for "short form" test to see if she is positive for my mutation.
I had the genetic counseling a few years ago and just had not done the testing yet in part out of concern that the results would make me uninsurable. I know I am fortunate that a routine MRI caught my tumor at the DCIS stage, and I had the MRI done as part of my routine screens. I have had mammograms since I was 24.
I wonder how many people with family history are being told about BRCA testing by their regular ob/gyns? I know that my daughter, who is now only 4 years old, will need to get tested at some point, maybe 18?
I am sorry for the rambling - thanks for listening.0 -
Julz4, Thank You for taking the time to compiling all this data, im sure it was hard work and took alot of your time to do it, appreciate it !!! Wow, just glancing at this data, it seems as if BC is becoming more and more of a "young person" disease so many of us are being dx well b4 we turn 40 and shoot 40 is still young hell 50 is young too!!!!! At one time I remember hearing peope say this was a "older person" disease but nowadays that isnt holding true .
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I think one must keep in mind the "computer/generation gap" when looking at the "younger" statistics here. Many older people may not be as computer savy and, therefore, may not be posting on internet forums. I would think this would tend to skew the results to a younger average age.
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howhm02 - I'm not less than 40, in fact I was dx'd at 57, but I am BRCA2+ and found that out AFTER my dx. Since the BRCA test came on the scene, I've been mentioning to my ob/gyn "maybe I should get tested." That doctor would sort of dismiss me, "you could, I guess, but I don't think insurance would pay for it" or she'd say "but you have to go to ___ [300 miles away] to see a genetics counselor." In the meantime, she would tell my gf to get tested. The difference, my mother and her 2 sisters got BC, but no more evidence in my generation (found out later my cousin had BC 2 years previous to me). My gf's father died of BC and her 1/2 sister (same father) died at 29 of BC. I guess that was enough for her to encourage testing, versus discouraging. My friend is in her 60's and cancer free (as far as she knows). I'm a few years younger and not cancer free.
More startling, when I asked a local surgeon (who treated BC patients surgically) about the test, albeit years ago, his response was "what would you do differently if you knew you were positive?"....uh, hum....now it's quite obvious - "remove my ovaries!" He even admitted to me recently it's not an area of medicine he keeps up on.
I told my ob/gyn, if even one of her patients has a concern with BRCA, she should have a geneticist's name at hand and offer to make her an appointment. Let the geneticist inform the patient if it's worth testing or not. Even after my counseling appt., my chance was 7% (w/o knowledge of my cousin), but I would have never regretted having the test done, even if it came out negative and I had to pay for it myself!
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46 the first time, then got a new primary in the other breast at 74
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Kam170 - Thanks for the response - it just astounds me! I understand that BRCA cancers make up only a relatively small percentage of BC, but if you knew you could eliminate it or at least greatly diminish it in that population, why would you not recommend testing? The genetics counselor I met with a few years ago asked the same thing, what would you do differently - I think it is nearly impossible to answer that question in the abstract.
My sister has a friend who's mother AND grandmother had BC and no one has even suggested that she see a geneticist.
I did not necessarily mean to limit requests to people 40 and under - sorry it read that way. I included that only because 40 has been the age when they recommend mammo so if you are not having them before then and have one of the BRCA genes unknowingly then you would be completely in the dark until you find a lump. I hope your GF never has to face this.
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It was recommend by the genetics that are entire family get tested, some did some like me procrastinated, until the knot, found out on the same day that I had Stage IV and Brac 1 postitive. It scared the shit out of the rest of my cousins and aunt's who then got tested. Two of my cousins so far tested postivie one of them is my double first cousin and the doctor's immediately performerd a mamogram, CT Scan and several other test to get a baseline. They actually want to see her every 6 monthes but she can't afford it, being a single mom with 2 kids. The consider her a very high risk becasue she is a close as you can get without being sisters.
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Started at 34 march 2012 with stage 2B-3A threw first round of chemo. Spots coming up negative & last Thursday now 35 I'm stage 4 HER2+. They offer free mammograms if over 40, wanted to sign up last year at work, maybe wouldn't of made much difference.
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We have 3 young kids 7, 11, 14
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I was 40 and dx with mets
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I was one month shy of 50 when I was diagnosed. Post menopausal for 6 years prior.
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DX at 42 Stage IIIC, recurrence at age 48 with infraclavicular node, mets to bones, liver, pleural sac age 49.
Starting chemo again today. Sigh.
I've seen my daughter grow from 21 months old to 9 years old during this time. I hope I'm here to see her grow up.
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Two weeks after my 36th birthday was DX stage 4 from the start. BRCA negative, mets to brain, liver and bones.
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42- lumpectomy, sentinel node bx, 3/8 positive
47- 1 node
52- 1 node
55-mets
now 57, past expiration date
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Stage IV metster from the get-go at age 40 - July 2011. No family history. In fact, no one else has ever had breast cancer in my family on either side.
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I am 74 and was diagnosed in Jan. 2012. I had a mammogram in Nov. 2011 and it was negative. In Dec. I started to have back pain and had a MRi and it was bone mets. In Jan. I had an MRI of the breast and they found a tiny tumor in the right breast. I have had no surgery. I have had 15 Toma radiation treatments and six Taxotere and Carboplatin treatments. I finished all treatments on 6/11/2012. I have a Zmeta infusion every month. The treatments were rough, but I always had positive thoughts. Now that I am three months post chemo I am having some sad times. I am on Anastrozole (Arimidex). My pain is minimal, but I have some nausea almost everyday. I am also having trouble sleeping. Anyone else with the nausea problem?
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33 DX - Stage IIB
35 mets to bone, liver
Mother of 2 girls (7 & 5 yrs old)
No family history of BC
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Stage IV at diagnosis - age 44
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First dx - 46, stage IIb
Mets to bone and lung - 59
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39, stage IV from beginning. mets to bone lungs and liver
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Age 49 with ductal ca stage 1. Mastectomy
Age 59 with stage. 4 mets to lung, liver, bone0 -
Age 25 1st.DX Mets to lung und bone
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1st. 22
Mets 35
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Age 42... Dx with mets to bone. Family history on dad's side.
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Dx age 36.
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51 stage IV from the start
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54 and pretty sure Im cured now. Just waiting for permanent implant.
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46 for primary dx
47 for secondary dx ( while still being treated for primary)
Don't get routine mammos in UK until 50.
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