When and how did you know you had IDC. Did you have regular mammograms, do BSE, and how did you choose a treatment plan.

I found out what type of cancer I had when I got the biopsy results. I went pretty regularly, 12 to 18 months, for a mammogram. My maternal grandmother died at the age of 56 of bc so I've been having mammograms since I was 30. I did do bse, but not every month.

My tumor was small and they told me that since it was an early detection I could have either a lumpectomy with rads, or a mastectomy with chemo. Since I wasn't comfortable with the radiation SE, possible organ damage, I decided to have the mastectomy with the chemo. Is that crazy? After the surgery and the pathology report came back I went form a stage I to stage IIIa, because of having 6 of 25 nodes involved, which meant that I would have to have rads and chemo. How's that for a bite in the a**?
Gina

Wow, Gina! That must have been a big shock!
Shirley

It sure was, Shirley. I know its a normal reaction, but everytime I have a DR appointment I keep waiting for the other shoe to drop (mets). My surgeon was the only one to say anything about how serious the cancer was, until I started chemo and rads. But they wer all trying to keep me optimistic about my prognosis with tx. I'm still here, almost 2 years now from dx. Bless the Lord.

I was 42. I had not had my first mammo yet. At 40, I went to the gyne, we talked about a mammo but daughter nursed til she was TWO ... she didn't have cow's milk until she 1 year old, I pumped when she was not with me. At two, she was still nursing when she woke up and when she went to bed (I worked full time) but on my days off ... she would nurse to take a nap! Kid drove me crazy but I felt guilty as a working mom, so I let her.

So, at 40, I was still lactating. That was April, turning 40 ... summer came along, quit nursing. But even 8 months later at a dr appt, he squoze the nipple and milk came shooting out!!!!!!!!!! ugh!!!!!!!!!!

I was now just turned 42. Taking a shower. On vacation at the River --- Colorado River (Bullhead City). Felt a lump -- July 3rd. That was a Monday. It was Saturday before I called the dr. Went in that night. They didn't want to wait til Monday. Tuesday, mammo. Friday they called and told me to go in to the office, NOW. I thought they were kidding .. nope. U/S and biopsy right then. Wednesday appointment with BS ... dx with IDC .. had some DCIS with necrosis. er+/her2+++. They didn't test for progresterone for some reason.

Mastectomy in August, Chemo Oct. Started Herceptin with Taxol in Jan 2006 and finished Herceptin in March 2007. Had to take 3 months off due to EF rate falling from 66 to 49 in 3 months. It was probably due to A/C not the Herceptin since I did fine after re-starting.

I had my first mammogram at age 44 - yeah, I know - we're supposed to have them starting at age 40 if there's no family history of breast cancer. Why didn't I have one til I was 44 then ??? I was too busy ... each year I'd go to the gyn for my routine checkup and they'd write me a script for a mammogram .. each year I'd have good intentions but just didn't follow through - I was really busy at work - working way too much overtime and just wasn't making time for myself. So - in March of 2005 I finally scheduled that appt and went and had my first mamogram done. A week or so later I got a letter saying I needed to call back for a diagnostic mammogram. I called the gyn's office as I was freaked out by that letter. They calmly told me that the techs had probably not gotten a good image on the first mammogram and that it's likely nothing.

So - I scheduled the appt for the diagnostic mammogram - they only do those on the day that the radiologist is actually in the office there so they can make sure they've got images of what he wanted to see more detail on. The took me into the mammo room and took the images and then had me go to another room to sit and wait for the radiologist to view the films (still with gown on) - pretty soon someone came to get me and led me to another room way down the hall where they were going to do an ultrasound ... the ultrasound tech asked me to humm... as she was trying to see if it was a fluid filled cyst. She went and got the radiologist and he came in to look at the ultrasound too. Once he had seen the ultrasound he talked to me and said generally when we see something like this I recommend a 6 month followup. I asked what other options there were - as I didn't want to wait 6 months if it were cancer. He said we can recommend a biopsy. So... I said that's what I want. Later in my records it was noted that "Patient insists on a biopsy".

My gyn called when they got the mammogram/ultrasound report w/ the "Patient insists on a biopsy" and suggested a surgeon who could do the biopsy in his office. I had that done - first he tried to do a fine needle biopsy (to remove fluid) - but there was no fluid - so he switched to a core needle biopsy - man that core needle is huge (the size of the entire thing). I was laying on my side just shaking uncontrollably - didn't even realize I was shaking until the doctor asked if I was ok. While he was doing the biopsy he said he was 90% confident that it was a fibroadenoma from the appearance.

My sister was in town for work that week and I met her every night for dinner - so kept very busy. Over the weekend I was in town shopping - I came home and checked my callerid and there was a call from my surgeon's office - just showed missed call - he did not leave a message. At that point I was convinced that he was going to tell me I had cancer. My followup appointment was on Monday late in the afternoon. I walked into his office and one of the staff asked if someone had drove me there - I was wondering why someone needed to drive me there ... I was perfectly capable of driving myself. Then the nurse came to get me and I could tell from the look on her face that I wasn't going to get good news ... same with the doctor when he came into the room - he was soooo serious. I think I told him - ok I've got cancer - tell me the specifics. I can recall pretty much every thing I did that day in vivid detail ... he discussed the pathology with me - we talked about surgery - we talked about a second opinion - he told me that I didn't need to make quick decisions ... he drew diagrams for me. When I walked out of his office I was numb and didn't want to go home - I had pottery class on monday evenings - so I just drove there - but didn't really do anything - and certainly didn't tell any of my friends there that I had just been diagnosed with cancer. Eventually I came home and called my sister and told her the news - and I think I asked her to tell my parents - I couldn't talk about it then without crying.

I did not have a lump that could be felt - it was very deep - almost at my chest wall. I was lucky that it was seen on the mammogram ... early detection is good. I had Stage 1 IDC ER+++/PR+++ Her2-neu negative.

I chose to have a lumpectomy and a hysterectomy with removal of my ovaries (other factors involved). My surgeon recommended the oncotype DX test and my recurrance score was a 19 (at the bottom of the intermediate recurrance risk) - I had several long discussions with my oncologist and ultimately decided to decline chemo (with my oncologists blessings) and then had full breast rads and have been taking Arimidex since Sept 2005.

My 4 year cancer-versary is in April!
Doreen

Wow, Doreen! Thank you for sharing your story. You are a strong gal! I couldn't tell my parents either. I had my brother call them and tell them.

I think sharing our stories gives others hope and courage. Every one of us fighting this disease is a strong woman - we learn just how strong we are!

The reason I was so insistent about getting a biopsy and not waiting and watching is that I'd lost my best friend to brain cancer several years earlier. Her story was so sad. She'd got married the year before and had just got pregnant (she was sooo happy). Shortly into the pregnancy she started having problems with her balance, having migraines and blacking out - after several incidents of this (they'd written it off as related to hormones) they ran some tests and discovered she had a brain tumor. She had brain surgery and consulted with a high risk gyn but everyone told her she needed to terminate the pregnancy. She had rads to the brain but her cancer was very aggressive.

She passed away within months of being diagnosed with brain cancer.

I knew that if there was cancer that the sooner it's found and treated the better ... I couldn't wait 6 months and then check to see if it had grown.
Doreen

Doreen, that story is just tragic. Life is so unfair and devastating sometimes.

When I read so many stories of how women were basically "forced" to be there own advocates, just to get a doctor to see them, and order testing, it reminds me of just how lucky I truly am.

The only negative part to mine, is it all happened in such an unexpected whirlwind, I was never given time to absorb what all was happing to me until 6 months later. I didn't schedule us a family vacation, first time ever, because I didn't want to go anywhere bald and wearing a stupid, stinking, ugly, fake looking wig.

But here is my story:

Week before Christmas 2007 I found out that a friend of mine had been diagnosed with stage 4 breast cancer. She too was in the fitness industry and we had taught aerobics together for years. She was always the epitamy of health. Anyway, both her mother and older sister had been dx'd at the age of 45, and she was now 45. I also learned that she had not been having regular mammo's because she had no health insurance. My thought was "OMGosh!!!"

Then I reminded myself how I DID have health insurance and I hadn't been to the doctor for just a routine "exam" in two years myself, so I picked up the phone and got an appointment for mid January. ( I had orginally planned on doing all my doctor, and dentist check-ups in April during spring break...........) Now honest to goodness, I never even thought about ME having a mammo, I just needed to have ..... well... my "regular" check up.

Anyway, I am talking with the doctor, who says "Well you are 41 yrs old and we recommend women getting routine mammo's every year starting at 40." I laughed as usual, because but for breast implants, I had no boobies. What little was there was very fibrous (lumpy, bumpy) and I told him he just needed to leave my "lumpy bumpy's" alone, thank you.

So I had my mammo the following Tuesday. Boys was I happy to have all that checked off my list of "things to do". That Friday at 5:45 pm my doc called to say some "calcifications" had shown up on my mammo and that I had an appointment for a biopsy Tuesday. Well this really didn't concern me at all as when I was 19, I had developed a HUGE (about the size of an egg) lump in my right breast that was nothing but fibrocystic disease, so I assumed this was nothing.

I only mentioned it to my mom and my hubby, but not out of concern, out of "good gosh, I have to close up my office to go to the stupid surgeon on tuesday".

I went Tuesday, surgeon said "nope, no biopsy" I need to have a lumpectomy, which he had already scheduled for Thursday, because at the very least, it is pre-cancer and has to come out anyway. Then he starts telling me about how they can do reconstruction now with mastectomies, and how people get ports for chemo, yada yada yada, and I am sitting their just staring at him like "What? All this over some fibrocystic lumpy bumps?" I walked out of his office with pre-op papers in my hands feeling like I was in the twilight zone.

The funny thing is, I was even more mad that I now had to close up my office AGAIN, call all my clients and cancel them and how that was a HUGE inconvience!

So, I still didn't tell anyone anything except my mom and hubby (didn't think I had anything to tell). Had lumpectomy thursday, got the call Friday......cancer. He said he removed about a 5cm x 3cm area, tumor was only 1.3cm, but cancer cells were <1mm to the margins. ER+/PR+/HER2/Neu ++/+++ (depending on which test)

20 days later, BLM w/tissue expanders, 4 weeks after that chemo, next thing I know I am hairless, hard boobs, swollen from steroids, and not a very happy camper.

Emerald - what a whirlwind ... you certainly didn't get a chance to absorb it - were thrown straight into the middle of it ... sorry it happened that way for you. I honestly don't think there's a good way for us to find out though ...
Hugs,
Doreen

Doreen, you are so right, there is no "right way". I am NOT a very patient person, so I am GLAD that I didn't have to wait like so many women do. I had a friend that from the time she found her lump, till diagnosis, was one month! And Cam was 3 YEARS!

So while I may talk about not being able to process all that was happening until it was basically over with, I am thankful to not have had to wait to know.

there are no "right ways" but plenty of "wrong ways" - delayed diagnosis, doctors not taking things seriously, tests not being done, patients fighting to get a diagnosis - insurance getting in the way of a diagnosis or proper treatment.

I feel very lucky that my cancer was diagnosed early and that I didn't have to put up a huge fight ... also feel fortunate to live in the time that we live in - with so much information available via the internet - and also support groups available over the internet. I live in a very remote area and I think there's all of one support group - but they meet during the day - doesn't work well for people who work.

Doreen

I went for a routine mammogram and thought no more about it. A couple of days later I got a call from the breast center that they needed me to come in for a biopsy. Went into a complete daze...sure I was dying, got right in, then ushered off within a couple of days to a breast surgeon who told me I just needed a lumpectomy and I had very large breasts so they also wanted to do a reduction. I was good with the reduction and they ended up removing 9 lbs of boobs. He said the tumor was about the size of a pea and I was whisked off to surgery before I could even think. The day of the surgery my cute, nice smelling surgeon came out and talked to my husband and daughter and told them all was clear it went very well and they got it all. They had taken 3 nodes and no cancer showed up. That was a monday. On friday I had an appt. with an onc. even though I didn't really know why but it was made before surgery so I went ahead and kept it. My dd and I were going Christmas shopping afterwards, it was Nov.'05. The onc came in and my dd and I had been laughing and he had a serious demeanor. Then he started talking about setting me up for TAC chemo then radiation and I said, slow down there turbo! Why would I need chemo and all that tx... cos my nodes came back negative? Not so, he says. Only one node had been disected after surgery the other two were sent to path. and came back pos. The walls of the room started closing in ever so slightly and I couldn't breathe. I said there had to be a mistake cos that's not what my family was told and he kept babbling and it sounded like an echo chamber in my head. I don't remember leaving the building..just sitting in my car. They did another surgery and I ended up with 3/11 pos nodes.
We didn't Christmas shop that afternoon but we did many other afternoons. I am still paying off credit card bills for that enormous Christmas. I figured, what the hey, I'm dying so my life insurance will pay off the credit cards...oops. Who'd have thought I'd have lived! My UPS lady asked me if I owned stock in Gap cos she made so many deliveries. I learned so many lessons about so many things that next year.

I found a lump. Thought it was the size of a pea and that turned out to be one little point of a spiculated 3cm tumor. My tumor was also multifocal IDC. Had bilateral mastectomy with reconstruction. One positive lymph node. Er/Pr negative, HER2 positive. I had dose dense chemo. 4 weeks of A/C then 1 round of Taxol...to hard on my...3 rounds of Taxotere. Had to stop Herceptin after 3 months because of heart issues.

Chemosabi

Hi everyone,
I was diagnosed with BC (rt. breast) in 1990 and had a modified radical mastectomy. An expander was placed by my PS at time of mastectomy. The tumor was 6 cm, er-/pr-, grade 3, poorly differentiated IDC. There was no lymph node involvement, but clusters of tumors were found throughout the lymphatic system of the breast.

When I found the lump, I went to see my gynecologist who said I was too young to have breast cancer!!! Yeah, right! I had to insist on a mammogram, which only showed calcifications, not the lump. Anyway, two months after I completed chemo (8 treatments of CAF), I had a prophylactic simple mastectomy of the left breast with expander placement. About 5 months after my exchange for silicone implants, I had a recurrence on the same side as my original tumor that was treated with surgery and radiation.

Fast forward to 2005-2006. Due to severe capsular contracture that I had endured since radiation, I started looking into new methods of reconstruction. The capsular contracture continued to worsen over the years and caused painful tightness and muscle spasms, not to mention a very deformed looking chest. I started reading about DIEP & S-GAP, and decided to look into perforator flap surgeries. I had a small tummy pooch, but I was doubtful that I had enough tummy fat to recreate one breast, much less two. Since any extra weight has always gone to my backside and thighs, I knew that I was probably a candidate for bilateral S-GAP. You know, back in 1990 after my diagnosis, I told my Onc that I didn’t understand why doctors hadn’t found a way to use fat from our backsides for breast reconstruction. Guess I always knew my generous behind would come to good use one day!

In 2005, this grandma with grandkids in tow (along with DH, Mom, Dad, DD & SIL) drove from Alabama to New Orleans where I had my assets rearranged! In an 8 hour surgery, my ruptured silicone implants were removed and fat was moved from my butt to my chest. I always hated the size of my behind, so now I have a smaller tush and newer, nicer foobs. Had great surgeons and no complications…pain YES, YES, YES, but no complications. I completed my reconstruction in 2006 after having Stage 2 GAP, a couple of revisions, and tattoos.

I’ve been NED since my recurrence in 1991, although I still suffer from chemo brain, which explains my disjointed post! Honestly, my brain has never been the same since chemo. I used to be pretty smart, but now I really feel stupid a lot. Memory of a fruit fly, trouble with word recall during conversations, replacing words with the wrong word, can’t focus or concentrate, etc., etc. Really embarrassing at times! Anyway, that’s my story! – Amy (not to be confused with PRA. I’m a born and raised Southern conservative, Christian, heterosexual who isn't a member of MENSA!!) Please don't ban me for saying that!

I loooooovvvveeee story's like yours acarr!!

I was diagnosed young too ,30, and was told "I was too young". Huge tumor, but negative nodes.
You give me and a lot of other woman a whole lotta hope.

I'm laughing at your last comment, Acarr.

Reading these stories bring back memories.

Back in the 80s (I was much younger then..ask Em) I sort of scratched or rubbed my boob during the night and felt a big lump. When I woke up the next morning I thought I had been dreaming. Nope, it was still there. I called my gyn's office and the gal said to hurry to a surgeon. I was scared _____less! Anyway, I didn't go to a surgeon right away. Honestly, I can't remember how long it took me to get up the nerve. So, I fianlly went. He aspirated it right then and there and got a bunch of green fluid from it and told me I was a very lucky young lady. No cancer. I walked out of there sooooooo relieved.

Fast forward to 2004. It was on Dec. 7 (I think that's the date cuz it's my granddaughter's b'day..need to look on the calendar) we were getting ready to come back home from our trip for our gd's b'day. She turned two. Her b'day was on that Saturday before we left on Monday. Like in the 80s, sometime during the night I sratched my boob (sorry camsdh). When I woke up the next morning I found out again it wasn't a dream. It was quite large. But, I wasn't worried. I was like Em and thought it was a cyst. I get my mammos and gyn stuff done at Duke. I had had 2 or 3 ultrasounds...had fibrocystic disease. When we get our mammos there the radiologist reads it right then and either gives us the "all clear" sign or we get stuck in an ultrasound room. Some people end up getting prepared for a biopsy.

Okay, so I wasn't worried. I had my dh feel it the next day (sorry camsdh), and he agreed I should have it checked out. I still wasn't worried. I even told the girls. My middle dd was like me...sure it was a cyst. And the other two were not worried either...after all, Mom wasn't worried. And I wasn't.

I call my primary doc and he sees me the next day. He feels the lump (that was embarrassing cuz I never take clothing off and I've been his patient for 20 years or more [sorry camsdh]) and I tell him I think it's a cyst. I'm sure he's just going along with me, and says yeah it probably is. The only part that worried me was it wouldn't move around, didn't feel soft like the other one did....but what did I know....it was a cyst! I wasn't worried.

I go the next day to have the mammo and US (if necessary) that my primary set up. I had it done here because I wasn't going ALLLLLLL the way to Duke for them to tell me it was a cyst. You do understand I really thought it was a cyst! After all, I had my mammo in March of 2004 and it was Dec. 2004...how could anything be that big and not show up? So, it WAS A CYST I tell you!

So, the mammo is almost complete....UNTIL..the tech comes in and needs another shot..you know..those darn little magnifying things they use when they put the boob on the tray (sorry camsdh) and mash the dickens out of you..the magnifier thing really hurts! So, I go back and sit in the little dressing room while the radiologist reads it. THEN, I was led to another room to have the US. I wasn't really worried cuz I had them before. The difference this time is a tech did the US instead of a radiologist. She takes a long time....the radiologist never did. So, I thought...why is she taking so long? Okay, so we're finally done and I get dressed..still not really worried and leave.

My primary wanted to know what surgeon I wanted to see just "in case." I told him.....but I wasn't worried because it was a cyst. In fact, if it wasn't a cyst I would go to Duke...not stick around here. Well, the report wasn't good. So I fought with the radiology place to get a copy of the rad report...not the one they give to the patients. They didn't want to. I told them it was MINE! And I WANTED IT! So, I signed something and they gave it to me. The gal said they didn't like to give patients that particular report cuz they didn't want to scare us and we go out and have a wreck or something. But, before the fight with the rad place my primary called me to let me know I needed to see a surgeon.

So, now what to do? I called my gyn at Duke telling them the situation. My primary faxed everything to them. In the meantime the surgeon here in town had been called by the rad place. The surgeon was waiting for me to call them for an appointment. They never heard from me so they called me and I assured them that I would see a surgeon AT DUKE. LOL Now, you gotta remember..this was getting closer and closer to Christmas and many health care people take off of work to shop. (Why do they think they deserve the right to take off when people are in crisis)? So, I called my gyn's secretary 2 or 3 times a day. Some days she didn't answer. I even paged my gyn. He even answered my page and told me I was top priority. Yeah, right! He called me the night I paged him and asked if I had gotten an appointment...nope! To make a long freaking story shorter (I know, I'm getting tired of typing and my brain is turning into mush) my dd called the secretary. My dd ask her if she could have the number to the appointment person. I had asked her and she said NO. Well, she gave it to my dd and told her good luck. DD gave me the number and I told Jonathon (that was the appointment guy) how upset I was with him. I asked him how long he had my papers...he had them at least two days before I called him. Anyway, he had been out with his sick son. I told him that it wasn't MY problem that he had to take off. My problem was I needed an appointment to see a surgeon. And that Duke should hire more people if they can't handle these things. Yes, I sounded like a crazy women...I was MAD!

So, a friend went with me for my appointment..dh was out of town..I think. The surgeon had already looked at my films, came in and examined me and told me before I got dressed (sorry camsdh) that he was 90% sure it was cancer. I wasn't worried. Nothing to it. So, I had a biopsy scheduled. I had the biopsy and the radiologist who did it told me it would be abour 4 days before she'd get the results back. I heard from her in 3 days. She told me it was the most common kind...IDC...so, what's that? I didn't know there were ALL KINDS of breast cancer.

I wasn't worried UNTIL my surgeon's secretary called me. She told me the surgeon was having her make appointmentS for me to have a CT scan of chest and abdomin, bone scan, and an appointment to see an oncologist and talk about possible PRE-OP CHEMO (I know..neoadjuvant chemo). I SAID, WHAT? WHY ALL THESE TESTS? She told me it was routine. But, when I heard CHEMO and ONCOLOGIST that's when I finally got scared.

Boy, I hope I don't lose this post before I click on submit. I certainly wouldn't write it again!

Well, that's my story. I had neoadjuvant, dose dense chemo AC/T, R mastectomy, rads, six months of Xeloda, and good old LE! And my brain has NEVER recovered to the low level it was already functioning....ask Emerald......she'll tell you.

Hi lexislove,
I'm glad my story was helpful to you. When I was first diagnosed, I didn't think I'd be here to see my children grow up, but I'm still here and plan on being around to see my 3 grandchildren grow up, too! Amy

Well Shirley (oops, I mean Mimi2), I didn't want my identity to be confused with you know who!

Do your grandchildren call you Mimi? Mine call me MeMe (pronounced meeeee meeeee here in lower Alabama).

Your story reminds me a little of mine. I never went back to that gynecologist who said I was too young to have BC. When his office received the results of my mammogram, his receptionist called to tell me I needed to see a surgeon right away. I, being a little upset by that news, asked to speak to the doctor and she said he wasn't available. I asked to speak to a nurse but she's not available either. Then the receptionist told me they had already made me an appointment with Dr. So and So, the surgeon, and I told her she could cancel it because I wouldn't be seeing any doctor that they recommended. Can you believe that the doctor had his receptionist break this news to me?! To this day, I don't think he knows if I'm dead or alive! I ended up with a surgeon in Birmingham, which is about 100 miles from my home. My Onc is there, too. And I can certainly relate to the brain dysfunction!

Amy (but not the OTHER one ), you may call me Shirley.

Yes, it's really GREAT to hear a story like yours.

Yes, my gk call me Mimi (pronunced Meemee). I had to fight for my name. When my dd was pregnant we were visiting them and went out to dinner. I brought up the subject of what I wanted to be called. I didn't want to be called "Grandma" (not that there's anything wrong with that name). She said that it was easier for me to be called Grandma because her dog and cats had always called me Grandma. My dear SIL agreed and also said let the grandchild decide. What? Well, here I was being called "grandma." The other two grandmothers (one was a step-gr) were called Mawmaw. I didn't want to be called "mawmaw" either. I wanted to be different. So, one day when my gd was old enough to jabber I had her call me Mimi. AH-HA! I said to my dd, "did you hear that..she called me MIMI!" So, I was "allowed to have the name I chose. You should hear the two gks when I see them. They calle me Mawmaw and giggle and then get it right and call me Mimi. Aren't grandkids wonderful!

The brain dysfunction has been here a while...just worse now. Maybe it's Alzheimers!

Mimi Shirley

Mimi Shirley,
I didn't want to be Grandma, Granny or MawMaw either. So MeMe it is. Yes, grandchildren are wonderful! I have a boy (8) and 2 girls (4 & 2). Sometimes my 2 year old calls me Miss MeMe. -- Amy

Ok, well it is Sunday night, and I can't think of a better time to confess than now...............

From my diagnosis, to my BLM, to first day of chemo to this very day, the only thing I was ever scard of was being bald. I have never been afraid of dying, wasn't afraid of the surgery, I was afraid of having the poison pumped through my veins cuz I knew how sick it was going to make me, but I was most afraid of being bald.

I hate that I am so vain, but I am not one of those women who are "beautiful" bald headed.

Emerald, you do yourself a disservice. Your inner beautiy enhances your physical beauty, even a bald you. I've seen your pictures. You are beautiful inside and out.

Gina