How was your HER2 BC first found?
 

Re: How was your HER2 BC first found?
 

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 ?

Re: How was your HER2 BC first found?
 

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.

Re: How was your HER2 BC first found?
 

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

Re: How was your HER2 BC first found?
 

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

Re: How was your HER2 BC first found?
 

Re: How was your HER2 BC first found?
 

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

Re: How was your HER2 BC first found?
 

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!

Re: How was your HER2 BC first found?
 

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....

Re: How was your HER2 BC first found?
 

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.

Re: How was your HER2 BC first found?
 

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.

Re: How was your HER2 BC first found?
 

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.

Re: How was your HER2 BC first found?
 

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

Re: How was your HER2 BC first found?
 

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. :)

Re: How was your HER2 BC first found?
 

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

Re: How was your HER2 BC first found?
 

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.

Re: How was your HER2 BC first found?
 

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

Re: How was your HER2 BC first found?
 

Re: How was your HER2 BC first found?
 

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

Re: How was your HER2 BC first found?
 

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!

Re: How was your HER2 BC first found?
 

Here's a "funny" story...I was raising a service dog puppy and was taking him out in the middle of the night. As I was making my way back to the bedroom in the dark, I ran into the door jam. Got a bruise and a bump that was still there a week later. Went to the family doctor, sent for mammogram, moved to the next room for an ultrasound...at the surgeon's office within 3 days, thanks to calls from the family doc as the mammogram place had me scheduled to "come back" in about 3 weeks. 20/20 hindsight, it had hurt for a long time prior to sleep on my stomach because of "hardness" in my breast. I'm thinking we don't see the forest for the trees. Thank God for the puppy and for my family doctor who got me to the surgeon within days, who has a waiting list months long. God was working!

Re: How was your HER2 BC first found?
 

Wow!
God is good! All the time! And he certainly seems to be watching over you. I've always thought service dogs were like little guardian angels...and this just confirms it for me.
Hope you are doing well now!
Denise

Re: How was your HER2 BC first found?
 

hey denise! been offline a few days! I love that both you and I have been quoting Pray's "God is good all the time". I use that too. Indeed thanks be to God for the puppy! I say thanks for puppies! Thanks for dogs all the time too. lol

Re: How was your HER2 BC first found?
 

Hi,
Prays " god is good all the time" is certainly true in my case, I went with a lump to my Dr in2004 aged 36 to be told no it's not cancer.
Only to find out 4 years later in 2008 that it was. Then stage 3.
I have had no spread so far which has amazed the Dr's and radiologist who were expecting this.
I have now been ned for 2 1/2 years.

Re: How was your HER2 BC first found?
 

Come on...don't be shy...answer the poll question!
More data gives us a better picture of what's really going on.
Help us all out!
It's anonymous...and it only takes a few seconds.
Denise
Sorry, all of you who got this, and already completed the poll..sort of preaching to the choir...sorry.

Re: How was your HER2 BC first found?
 

Denise - took my bra off at bedtime on March 1, 2010. Stretched my arms and sort of scratched under my right breast and there it was. I knew immediately that it was malignant but was in my primary care doc's office at 9 am the next morning. She's a breast cancer suvivor, too, and was straight with me - she agreed that it was probably cancer. So I was off for an early mammogram (mine wasn't due til June), ultrasound, core biopsy, etc. Those tests not only confirmed breast cancer but discovered a second tumor that I couldn't feel. Got the "official" word on 3/9/10 and from there to the surgeon and the rest is in my signature. The two tumors were different - one triple negative and one er-/pr-/HER2+++. Weird. Could never have imagined last year (from March til December) that I would ever feel good again but I DO!!!! A challenging year but also filled with blessings.

Re: How was your HER2 BC first found?
 

Joni,
Thanks so much for sharing your story. I'm so glad you found your BC, and are doing so well. I love reading your posts here. You seem like such a kind, compassionate person. Your grandchildren are so lucky to have you for their nana!
Be well!!
Denise

Re: How was your HER2 BC first found?
 

Had my mamo and ultrasound done in August, a week or so later I get a letter in the mail congratulating me of no signs of cancer present and not to forget to make an appointment for next year! Awesome I thought as two years ago (August 2009) I had breast cancer on my right side. That cancer was a walk in the park. Had a lumpectomy followed by radiation and what was to be a 5 yr treatment of Tamox (It was stage 2, er/pr+, her2-, no nodes)
Because my surgeon is a brilliant and wonderful man, when he received the reports from my mamo and syno he requested my films from the past 3 years. Low and behold he saw that calcifications were increasingly geared to one spot but not so that it would have been alarming to anyone else reading my films. He called me and explained that it was most likely nothing but nonetheless would like to do a biopsy.
So, biopsy is done and I get the "it's cancer call" This time not such a walk in the park (Stage 1, Grade 3, ER/PR+, HER2+++, no nodes or vascular involvement) Two years on Tamox did nothing at all for me :-(
What an amazing man, brilliant and caring man my surgeon is.....where would I be a year from now if he wasn't such a concerned Dr. ?

Hugs...Lisa