Poll regarding how us Triple Negs found our tumor

msigfoxrun

I read all your comments on the discovery of your bc.  After having  good mammos every year since I was 40,  the mammos in 2002 and 2003 were different and the radiologist said there "seemed" to be a change--took more angles etc. and each time sent me home saying I was fine (much to my tearful relief!)  On January 30,2004 I was cleaning out my fridge and I felt that my underwire was annoying--reached to the armpit area to adjust the bra and there it was-- a lump in my armpit.  Now I am totally freaked out.  Long story with additional screwups including the fact that my gyno never got my yearly mammo reports.  I was Stage 2b primary site no bigger than a small pencil eraser left breast 3:00 area that had spread to lymph nodes.  Had lumpectomy and removal of lympnodes.  Clear margins and nodes had 2 for sure others were poorly differentiated.  Chest wall not involved. Did the agressive ACT chemo, radiation etc. I am 60 with no bc family history.  All is well and proud to say I am a 3 1/2 year survivor.  Just had a breast MRI today as recommended by my surgeon.  My schedule is 6 months MRI 6 months Mammo. Can't express how wonderful this site is for us triple negs.  Love all of you!

Shirlann

Hi gals, I was told the lump, clearly seen on my mammo was "surely not cancer, it has smooth edges and cancers are spikey". Two years later, I had it for sure, and it was a sub-type called Medullary, (characterized by smooth edges) which only 5% of breast cancers are. Then, they thought I had Lymphoma. When I went to UCLA to get a second opinion the surgeon "lost" the original mammo that clearly showed my cancer and re-wrote his report. Sheeesh, no wonder I am a grouch.



Hugs, Shirlann

myrenewal

I also found my tumor while showering and felt it had popped up overnight - it was in the three o'clock position so I know I did not just miss it - it was too close to my underarm and much too large to have missed.  Even then I wasn't too worried since I also have dense breasts and I already had my yearly mammo scheduled for 8 days later - I just planned on making sure not to miss my appointment.  My husband didn't say much when I showed him, but later, after I was diagnosed, he told me he immediately knew I was in trouble when he felt it.

Interestingly, I had been taking estrogen only HRT and my gynecologist had just recently added progesterone.  About a six weeks prior to discovering my lump both my breasts got hard and firm and stayed that way for about a month - I felt like a twenty year old again!!  Don't know if it had anything to do with anything since I am triple negative, but find it an odd coincidence.  If I had it to do over again I would NEVER, EVER have let a doctor prescribe hormone replacement therapy for me. 

After my biopsy confirmed the lump was cancerous, my breast surgeon did obtain and compare my prior year's mammogram with the newly obtained mammogram and showed me the two side by side.  It clearly was not there previous year. 

smerf

Hi all,

My 2 cm tumor was found by mammogram. I had had my yearly gyn appt the week before, and tumor was not palpable. It was in the upper outer quadrant, which is common, and right on the chest wall. Probably not palpable because I was DD cup, and it was deeply buried.

BrendaK

I found mine in the shower while shaving my armpit in June 2007; In Dec 2006 had baseline mamo done - came back fine.  However, when I actually looked at my film, I could see this lump, and in the written report of this mamo it says "benign appearing" and "probably"  which means he saw the lump - but guessed it was ok.  This really makes me mad.  These doctors are only guessing.  If I would have only asked to see my written report, I would have questioned this and what about my gyne - she didn't question it either.  Need to pass word on that it is important for us to get our written reports and look for words that appear to be guess-work.  In December this lump was about the size of a dime, in June it was 1.9 cm.  Was not close to chest wall, margins clear, no node involvement.  I am a really lucky lady.  Just finished chemo and will be starting radiation on Nov 26th.

Brenda

HeatherBLocklear

Amazing how similar our stories are. I had a clear mammogram at the end of June 2007, and one evening in early November, while trying to go to sleep, I felt a huge lump in my left breast. It was NOT there the day before, I am positive.

I had "probably benign" reports from ultrasounds, digital mammo, and MRI, all done in mid-December. Now a diagnosis of triple negative in February 2008. I will know more details when I see my surgeon on Monday.

My lesion is not (as far as I know) near the chest wall, but it is huge and associated with a large lymph node in the axilla. I had just turned 60 when this thing appeared, and also have very dense breasts.

Annie

HollyHopes

Annual mammo...even surgeon could not palpate it...too deep inside DD breast.

wvgirl

HI THERE

 I HAD A MOMMO IN MARCH 07 CAME BACK OK

I FOUND MY LUMP IN LEFT BREAST  WHILE DOING SELF BREAST EXAM -IN OCTOBER 07

THIS DID NOT SHOW ON MAMMO HAD ULTRA SOUND THEN, BIOP THEN MRI LUMP IS 3 CM AND STILL DID NOT SHOW UP AFTER BIOB-THE ONLY THING THAT SHOWED UP WAS THE CLIP THAT THEY PLACED AFTER DOING THE BIOP

I HAVE VERY DENSE BREAST AND WAS TOLD THIS IS THE REASON

I WAS TOLD WOMEN WITH DENSE BREAST -SOMETIMES YOU CAN HAVE A LUMP FOR UP TO 8 YRS BEFORE IT WILL EVER SHOW ON A MAMMO

RN2teach

I was 4 mo overdue for mammo. Previous mammos (4) were good. Honestly had been lax with my BSE, so not sure how long my lump was there. Not more than 2-3 months, though. Found a 2 cm irregular hard lump in shower at 10:00 in Rt. breast. Had my Mammo and US next day. When I saw the look of it on US--tons of microcalcifications--I knew it wasn't good.

guitarGrl

I was also 3-4 months overdue for my mammo, but that turned out to be a good thing. The radiologist said the tumor was about as small as it can be and still be seen on the mammogram. They couldn't feel it - even up to the day of surgery.

wetcoast

I found mine during a shower in the 11 oclock position. Am pretty regular in bsx and it wasn't there the month before. It was like a pea and seemed quite mobile but as time went on didn't move as easily. My previous mammo was exactly 1 year before and nothing showed.  Not hard to find a lump when the boobs are smaller than the lump

Wink333

My tumor was close to the chest wall. Seemed to pop up in two month time period but didn't really. In '06 I felt something small, deep but elongated not like marble (always heard bc was like marble). In '06 I didn't say anything to Gyn (stupid I know now) and he felt nothing, '06 mammo was clear.

In '07 (exactly 12 months later) the same Gyn felt nothing, I hadn't done self exam for long time due to shoulder surgery other side. 2 months later felt painful large lump while showering, in same spot as 06, but not deep. (inflammation was on surface but actual 2cm tumor was deep, arm side of breast). Mammo and US 14 months from when I originally felt "something deep" showed tumor.  Was stage IIIc by this time -would they have found it on US in '06 if I had said something and would it have been stage 0 or stage 1.  Probably.  If wishes were horses.......

FrequentFlyer

I was just getting out of bed when I found mine: 5 cm at 8 - 11 o'clock. Nobody could believe I hadn't felt it before. Well, in a way I had, as I had been feeling "something" deep inside, but my doc could find nothing wrong with my lungs and heart. My tumor was indeed so close to the chest wall that it had already infiltrated the pectoralis major.

Less than 4 weeks after finishing neoadjuvant chemo (TAC) my tumor sort of exploded overnight, almost doubled again in size within 3 - 4 days. That after having shrunk nicely during the chemo regime.

No one knows for sure, if this "explosion" consisted of new tumor tissue or if, as one doc put it, only some liquid "changed places" (After the biopsy I used to have a huge haematoma right at that spot).

But thanks to this experience I'm no longer surprised to read about huge tumors popping up out of nowhere overnight. 

suz45

I was stretching had an itch, scratched and found the lump almost under my arm, but on the left side of the left breast. It was about 2 cm. Had a mammogram 2 days later and the rest is history.

Suz

susieloutoo

I found mine doing a self exam BECAUSE my OBGYN thought I should get an early mammo...ONLY because I wanted to have another baby...NOT because she found a lump ( she did not)....she had done the check a week before! So it came on quick.

Susieloutoo

pta0317

I've found this discussion quite informative.  My 33yo daughter called me about a large lump in her right breast.  I have some medical training (medical assistant/medical transcriptionist) and my work comes from a large cancer research center in the South, so I get a lot of breast cancer dictation.  Since she is only 33 and it was a large lump and there was some heat around it, I was thinking cyst, but advised her to see a pro about it.  Sure enough, Stage I invasive ductal, triple neg.  Apparently, the size of it was pretty much reactive tissue around a 1 cm lump. 

If she had had to wait until she was 40 before her first mammo, I can't allow myself to think about the course this might have taken.  She has already finished her chemo (in January) and just last week started her six-week daily course of radiation. 

I'm hoping to participate in the SGK walk as crew, but what I'm hoping for this year is to get the insurance companies to start covering mammos any time a medical professional thinks it's appropriate and not put up an age barrier.  Anyone with me on this?

Thanks all!

tornadogirl

My mamms never found the lump. I found it one day while in bed checking myself. It was 1 CM on the ultrasound but when it was removed, it was like a "capsule" shape and was 2.3CM deep so that made it a stage 11 with no node or blood involvement. Grade 3 of course, fast growing...

Why does it show up out of the blue?

Think how cells multiply. The first three or 4 years they are multiplying but there are fewer cells that are doubling so the growth is slower early on.

Then, say, the 8th year, your tumor doubles very fast and very very fast again since there are 10000000's more cells that are now EACH doubling.

So, it would be like doubling OVERNIGHT.

Think of a fetus and how fast the cells grow. Same thing with a tumor (no insult intended to fetuses) 

Read about growth of cells. The faster they grow the more of them double and the bigger the size, faster. 

The tumor: It might take 4 years to double in size the first time. Then two years to double the second time.  Then one year to double the third time, then 6 months to double the fourth time then two months to double again, then one month to double again!

I believe at a certain stage, it can double its size in a month! Hopefully we catch it before then!

Mine was bigger when they actually removed it a month and a half after the diagnosis!

Had it grown during that month and a half?

I believe it did.

Also, since it was a "capsule like" shape and the dimensions were 2cmx2.3CMx1.2CM (when removed) it all did not show up on the ultrasound, some of it was "hidden".

RN2teach

Hear, hear pta! Insurance needs to cover mammos and MORE (U/S, etc) when recommended by our docs!

Tornado- yep, we just had to get the most aggressive growing BC... lucky us...

CarolC

My 1 cm tumor was found in Sept 07 by ultrasound after a mammogram. It was not palpable. It was in the lower inside quadrant. I had always had annual mammos but this year I was about 4 months overdue because I had moved across country and just didn't get around to it.

jeng

Found it through BSE - nothing one month - next month....what is this?   2 cm .....high grade 9/9 bloom.  so far, so good

4 A/C 12 weekly taxol  36 rads

joykeeperorg

My cousin who passed away in May 07 from breast cancer came to me in a dream about a month later an put her hand over my heart an said its gonna be okay the next morning there was my monster!!!

RN2teach

Hey joykeeper:

I popped over to visit www.joykeeper.org  What a wonderful idea! The BC hats are so pretty--gotta have one!

Thanks for the link.

Paula

twink

Funny but sad... I'm organizing paperwork today in preparation for listing my house.  I came across the pre-BC Dx mammo report that told me everything looked normal.  Thanks.  Two months later I found the BIG lump all by myself.  Sometimes I wish I could go back and insist on an U/S or MRI because of the dense tissue comments in my mammo reports.  If I knew then what I know now....

Gagal

I'd been going to a breast specialist for a good 5 years because of a thickening they were watching.  Every 6 mos I had ultra sound and mamo yearly.  I mentioned several times about removing it but felt silly because they insisted everything looked good.  I asked about MRI but was told I was not candidate for it.

Long story short they detected a change a year ago and I ended up with an invasive 2.1 cm trip neg tumor.  The what if's are what drive me crazy.

smithlme

In December of 2006 I noticed that the outer side of my left breast felt like it had a three inch thick "blob" in it. I kept an eye on it and the first part of March I was driving down to Oceanside to see my son, his wife and new grand-daughter. While driving, my breast felt full and I would have the feeling of a let down, from breast feeding. When we got home I still felt the blob on the left side. I made an appointment to see my doctor and she asked me about the lump  near my nipple.  Um...what lump??? Needless to say, I had several mamos, an ultrasound and a core biopsy. I was diagnosed March 28, 2007 and had my mastectomy on April 9th. My surgeon had a cancellation and I grabbed it.

When I think back, that underarm use to itch often and drive me nuts. My doctor said that it was probably the nodes trying to fight back. Luckily, they were all clear...huge, but clear!

Linda

FloridaLady

I woke up one day and pulled my arm across the very top of my right chest wall (barely in the breast) and felt a large lump.  It was painful to the touch.  (but cancer does not hurt..yeah!)

My tumor was already 7mm. (not cm)  I had three very painful mammo's, that I almost slap the sh** out of the girl because they were so painful, and they could not put my breast that high in the machine. I was crying the whole time.  Why they did this when they knew they had to do a ultrasound and biopsy any way? This would not happen to me again.  This cause extreme activity in my tumor that double in size by 30 days it took me to get to surgery. This was around Thanksgiving and they were closed for a few days. My center has changed this whole procedure completely now.  A little late...but they have a excellent new Women's Center and all women techs, surgeon and oncologist. 

Flalady

Flalady

Mimsi

I had a mammogram in December 06 and it was normal. I began having pain sometime in the spring of 2007..just remember rubbing the spot as I drove on long jaunts for work.  The pain got progressively worse to the point that the pain was deep and sharp and almost constant. Finally in August, I called my gyn and asked if I should get an early mammogram. She asked me to come in. She found no lumps and no abnormalities and told me they would not do a mammogram. I asked her why it hurt so bad. She looked at me very searchingly and then she decided to say that she felt something and sent me for a diagnostic digital mammography and an ultra sound. They found the lump underneath fibrocystic lumps that had prevented the lump from being felt in examination. It was fairly small slightly less than 1 cm. I would NEVER have felt the lump if it had not been for the terrific pain..a real blessing. The pain was right where the cancer was located at 12 oclock.

I was told by 3 doctors that breast cancer didn't hurt. It does sometimes. [I later learned that a friend that I lost in 2005 to cancer had triple negative and her cancer present with pain.]  My gyn promised never to tell another patient that it doesn't hurt.

My prognosis was not good.."nasty biology" according to my onc. But having caught it early was a blessing. It is very agresssive..grade 3 on 3 measures and a 9 out of 9 on invasiveness...so, very likely to invade other organs. I grew another 7 mm cancer in the 5 weeks between biopsy and mastectomy. I chose mastectomy after learning about triple negative and am glad I did as I am not certain the other tumor would have been found with a lumpectomy. I believe my gyn saved my life by fudging the truth and sending me for a diagnostic workup. [The surgeon who did the biopsy could not find anything with palpatation even with the mammogram and ultra sound results in hand to guide him].

casey1966

I am trying to gather information for my mother-in-law who was diagnosed with a ductal tumor about 8 years ago.  It was very small, required little surgery or post-operative treatment.  She has had clear mammograms ever since. 

In December of 2007 she was diagnosed with endometrial cancer, which turned out to be stage 3 (her doctors assumed it would be stage 1 because she had only been symptomatic for a few weeks).  After her hysterectomy she complained of leg pain and numbness, and after a lot of persistence on her part, her doctors performed an MRI to find several metastatic sites in her hip bones and vertebra.

Once the doctors performed the bone biopsy, she was found to have metastases that resembled triple negative breast cancer.  The doctors have no idea how long these lesions have been there, as she had no bone pain to speak of

Does this sound very unusual to you? I have read many of your stories about your breast tumors developing very quickly, but for her to have several metastases following early stage 1 breast cancer years ago with no recurrent cancer in the breast.

I could appreciate any thoughts you might have, as I am really trying to help her and my father in law understand this diagnosis.

Thanks!

RN2teach

Casey:

First, let me say how sorry I am that your mother is facing another battle with cancer.

I was just diagnosed in Dec. 2007 with triple negative breast cancer. My oncology team (surgical onco, medical onco, and radiation onco) all state that triple neg. is just as likely to recur in the bone, lung, liver, or brain as it is in the breast.

I've read several studies to that effect as well.

Hope this helps and my best wishes to you and your mother.

Paula

Anonymous

Yep, mine was something that called for a mammogram when I was 27 years old.  Told it was normal, and to go on with my life.  

3.5 years later, my left breast had been hurting a  LOT, I was nauseated, and VERY tired.  We were trying to conceive, and I thought I had a baby growing in me. 

My husband felt the lump (God bless him, he saved my life).  When he told me about it I tried to brush it off with my "oh, my boobs are always lumpy" story.  When I felt it, I said, "Oh My G**."  I knew. 

I had just had a regular check up in the end of July, and this was the beginning of September.  My doc felt NOTHING then, now there was a huge boulder of a tumor in my boob.  It popped up overnight. 

Yep, my tumor grew back towards my chest wall.  On the surface for the sonogram, it measured 2 cm.  With the bilateral breast MRI, it was 7-10 cm.  Yikes.  Thank GOD for second and third opinions (the third opinion was the one that did the MRI). 

I did my BSE on a semi-regular basis.  I had just done one about a month after my annual. 

If only I, like so many of us, knew to yell, scream, and kick, when our bodies first told us something may be wrong.  

But here I am, 2.5 years later, and I'm doing well.  Just constantly freaked out about aches and pains (blasted arthritis doesn't make that easy!!!!).  

Love and prayers, Deb