How was your HER2 BC first found?

NEDenise · 09-13-2011, 04:26 PM

Hello Ladies,
In this unofficial poll...please vote for how your BC was initially found...even if it wasn't confirmed as BC until the lab results came back.
Thanks!
Denise

norkdo · 09-13-2011, 08:24 PM

thank you sooooo much for doing this, denise.
I had felt that I must have been in a minority of women, that it must have been cos I didn't have a family doctor, who found the breast cancer myself, and who, upon diagnosis, was already at Stage 3b. Through two polls here, I find, instead, that that is the way HER2 breast cancer is found: the majority find it themselves and are already in stage 3b. Fascinating. I had considered a lawsuit for my false negative mammogram. Can we get a poll on that, as well? "How many of us have had a false negative mammogram." also can we get one on suspected (never confirmed, mine) dense breasts ?

ElaineM · 09-13-2011, 08:43 PM

An annual mammogram found the tumor. My doctor had a "hunch" that I was her2 positive !!!!!!! He followed up on his "hunch" and saved my life.

candlegranny · 09-13-2011, 09:20 PM

my mammogram was in sept 2009 and said i was fine.. january 2010 i was stage 3C and alot of lymphe node involvement. how can this happen

AlaskaAngel · 09-13-2011, 09:55 PM

Even people who work daily with patients who have breast cancer and who themselves have the recommended periodic mammograms are often surprised to find out they have cancer when they are personally diagnosed. When people have routinely had testing done that comes back "all clear" it is awful to find out that the types of testing that is done does not always find the cancer even when sometimes it is there.

Mammograms primarily show a few characteristics, such as variations in calcifications. Some calcification shapes and sizes as well as the density of the calcifications indicate that cancer is more likely than other calcification shapes, sizes and grouping.

Ultrasounds distinguish between fluid-filled areas and solid spaces, with solid spaces being more likely to be cancerous.

That is why often both are done before doing a biopsy to bring out tissue that is then analyzed outside the body for cancer.

These tests are not 100% perfect every time. With mammograms, if the breasts are especially dense, sometimes calcifications are indistinguishable from the dense breast tissue, or "invisible".

In the last decade there has been greater recognition that other types of monitoring may be needed as well for patients who have especially dense breasts.

I personally wonder why there hasn't been more interest in routinely ordering something like a CA 15-3 or CA 27.29 for the patients who have dense breasts, especially for those who are considered to have higher risk factors for breast cancer to begin with. To me that would make a LOT more sense than just relying on an annual mammogram. The CA 15-3 and CA 27.29 is not a perfect test either. But at least they would have one more possible indicator to help in their decision-making process.

AlaskaAngel

NEDenise · 09-14-2011, 04:52 AM

Hi Everyone,
My surgeon told me that HER2 BC sometimes grows microscopically, along the surface of the ducts, without forming tumors for YEARS! He says that's why many of his patients are not diagnosed until they have advanced disease. The guy is a prominent researcher, as well as a surgeon...he says several cancer centers are researching ways to detect HER2 disease earlier...but didn't have any suggestions for me to pass on to my younger sister. I'm worried she'll end up like me someday. Blindsided by stage 3 disease,

Insurance will not pay for her to have MRIs instead of mammograms, and she was told that genetic testing "would never be approved". But I'm going to pass on the info AlaskaAngel shared about the two blood tests. Thanks!

Stay strong, new friends! Keep praying for that cure!
Denise

norkdo · 09-14-2011, 05:12 AM

Thank you for sharing this, denise. It is gold. absolute gold.
wow.
wow.
sending it to my sisters.

jra40 · 09-14-2011, 06:58 AM

Unfortunately, I could've found it on my own earlier in the game. I actually had pain in my right breast and thought it was just PMS. Once the pain got increasingly worse over 6 months, I had my doctor check it at my routine gyno visit. I am still mad at myself for not being dilligent in doing self-exams.

Funny thing is, when I told my doctor I was having pain she immediately said that cancer does not cause pain. In my case she was dead wrong -cancer can cause pain! Should've been a red flag warning for me!

Lisa1962 · 09-14-2011, 07:35 AM

March of 04 I had a clear mammogram - by November I had a lump which had already spread to my spine... I had some fast-growing cancer - I've always liked to excell at what I do....

NanaJoni · 09-14-2011, 08:26 AM

Found a lump myself when taking my bra off to get ready for bed. Was in the dr's office at 10 am the next morning. Had mammogram/ultrasound and there were actually 2 tumors (one was er-/pr-/HER2+++ and the other was triple negative). If I'd waited for my next mammogram which was 4 months away, I'm sure I would not have been Stage 1. You can see the rest in my profile below.

ljbm · 09-14-2011, 08:53 AM

I,like some of you, had been told that breast pain does not indicate cancer. I had a lot of fibrocystic tissue and when my right breast began to really hurt, I thought that I really need to cut down on the caffine that I ingest. For me, caffine aggravated the fibrocystic issues. I also had a clean mamogram in May and by August when I found the lump, it was 6.2 cm. I found that interesting what someone said about HER2+ growing microscopically on the ducts before turning into a tumor. That makes so much sense in my case.
Prayers to you all.

shellusea · 09-14-2011, 10:07 AM

This is a very interesting thread. Having inflammatory breast cancer (IBC), not detectable with mammogram I too found it myself, even if there is usually no lump for it, there is changes in the breast you can SEE. IBC is agressive and fast growing. It is usually found stage IIIB or C, or IV in a matter of weeks.
NEDenise, I woulk really like to know the name of your onc who talk to you about the microscopically thing. This is so interesting. Working myself in a research center, I would like to see if research are conducted in that way.
IBC does hurt, it is one of the symptoms, like if you have a bruise.

ljbm · 09-14-2011, 10:12 AM

I need to correct one item. I had IDC ( Invasive Ductal Carcinoma) NOT IBC ( Inflamatory Breast Cancer)

shellusea · 09-14-2011, 10:20 AM

I also was told younger that a pain in the breast is not cancer

, and sadly it is one reason I waited to consult.

ljbm a lot of IBCers are treated at MD Anderson and they all love it like you!
p.s. I understood you had not IBC.

tricia keegan · 09-14-2011, 12:31 PM

I found mine in the shower at a hotel when away from home attending a training course with my job!

norkdo · 09-14-2011, 06:34 PM

candlegranny,
wow. similar to mine but my first mammo was suspicious. i received a letter to get a follow up one. second one "all clear." Ar ar ar. I left off getting a mammo again for over two years then found a big huge round tumor in my right breast when i dieted and examiined my profile in a gym top. "what is making my right breast look like a girl half my age....high and round?" (ask a silly question, get a scary answer!!!!!!) LOL
Question:
do you happen to know, re: elizabeth edwards' quote, where I can read the stages of cancer she went through for her breast and perhaps what kind of breast cancer she had? poor poor woman.

Mary Jo · 09-14-2011, 06:35 PM

I remember one night lying in bed, early 2005...possibly March....and doing a self breast exam. All of a sudden my fingers stopped on an area that I felt something....it did feel different BUT explained away with it being scar tissue from a lumpectomy I had in that same area 12 years prior. I knew my mammogram was coming up....June...so put it off because I knew it wasn't anything anyway. I just had a mammogram a year prior and all was fine.

June came and I went to have my mammogram. I mentioned to the tech. that I had a lump in the area I a lumpectomy in 12 years prior and she noted it and put a piece of tape their. She felt it too. They did the mammogram and said "all clear.......see nothing." Because the lump could be felt they decided to do a more concentrated picture and did it again. Still......."all clear....see nothing." That afternoon they did an ultrasound and biopsy because now they DID see something. Remember, this was not seen on mammogram.....my tumor was 4 cm. in size...that is approximately 1 inch in diameter. Yikes.

So, the next day I got that dreaded phone call. Yes, breast cancer. Funny thing......the lumpectomy I had 12 years prior...no cancer BUT atypical hyperplasia cells....which means that women who have these cells often DO develop breast cancer. Makes sense what Denise said above....about it growing microscopically on the duct before becoming a tumor..... Hmmm.......interesting.

SOOOOOOOOOOOOOOOOO important to know our bodies and do those self exams. In my case, if I hadn't....God only knows..........

Love to you all, my sisters,

Mary Jo

NEDenise · 09-14-2011, 08:12 PM

Wow, Mary Jo,
Your story is soooo similar to what happened to me...scar tissue from lumpectomy a decade before...

I hope that's a "sign" that my DIEP will go as well as yours!!

Stay well! You're an inspiration to gals like me!
Denise

Henny · 09-16-2011, 07:18 AM

There's a new scanner out called Lumagem that can see small breast cancers. It's good for women with dense breasts (about 30% of us) who's mammograms can't see tumors. It's also good for women who have a suspicious mammogram and can't have an MRI

Elizabethtx · 09-17-2011, 07:54 PM

I too had a mammo a year and a half earlier, which they did a biopsy and found "calcifications". Not to worry, that has nothing to do with cancer. Then I had pain and a sore area. Was told no way it could be cancer then, because C doesn't cause pain. They were dead wrong! Same area as the previous biopsy and in two months of waiting the tumor grew to over 3 cm. I tell everyone now, don't believe it....go get it checked ASAP!
Interesting poll as it confirms what we survivors all know!