ILC - The Odd One Out?

I was pretty tired in the year leading up to finding my lump.  I was also getting every cold that was going round. Both were unusual for me.  I had a new job that was pretty stressful and thought the tiredness was from that,and it could have been, but I normally handle those sorts of stresses really well. I was always the sort of person who thrived when there was a job to be done, juggling 40 balls in the air and deadlines that couldn't be moved.

I was getting one cold after another, and that certainly wasn't normal for me, I usually shrug off most colds that seem to be going round.  Funnily enough, since dx I've probably had two colds lol.

I would panic every time I had a scare after chemo had finished.  The year after chemo and herceptin I had three scares and that was very stressful.  First one was when I had a persistent pain in my lower back that my chiro couldn't help with.  Was sent for a bone scan and that turned out to be arthritis.  Second scare was when I found a lump in my "good" breast. That turned out to be a fatty cyst. Third scare was when I had a routine fecal test that everyone in Australia gets a kit for when they turn either 50 or 55 (mine was at 55) and there was blood found.  That turned out to be benign polyps.

Now that I'm having unexplained pain in my abdomen, I'm not so scared.  It is what it is, it will in all probability turn out to be something other than cancer, and if it does turn out to be sinister, then I'll have to deal with it then.  I refuse to be worried over everything that goes on in my body now. Life is too short to spend time worrying about what something "might" be.

I'm not saying it's not in the back of mind that ILC is sneaky and has a tendency to turn up in places different to IDC, but I'm not going to stress over it.  I would like to find an answer though - persistent pain isn't good.

I now have a less stressful job, have turned my passion with photography into a business which is doing well and life is slower and better. If it hadn't been for bc I would still be working in a stressful job without the time to follow my dreams.

Trish

I was extremely healthy prior to dx.  I am a school teacher, and I am exposed to every sickness the kids come in with.  I haven't had a cold In 3 years.  I did have a lot of stress the 5 years before DX.  My husband lost his job, and started a landscape company, which due to the economy, hasn't been a great money maker.  My younger daughter had depression, and in order to pay for my girls college, I was working every night and Saturdays.  I was always tired, but I do remember one night feeling sheer exhaustion, like I do now with chemo.  I remember thinking that was odd, but attributed it to my hectic schedule. I definitely think stress was a large contributing factor.

Jumping right in -- I would love a data base of our characteristics.  It seems so few doctors are savvy about ILC and, in turn, we aren't educated enough about it until we have it.  I had such blind faith in my family practitioner and my annual mammogram.  

So, here are my stats:

age at dx:  48

height/weight:  5' 6 1/2", 140 lbs.

smoke: never, but grew up in a house filled with second-hand smoke 

BCPs: yes, age 17 until week of bmx (except when trying to get pregnant, being pregnant or nursing)

periods: first at age 12, nothing since surgery; normal 

alcohol: moderate/heavy until dx (I LOVED wine at night with same exceptions as with BCPs)

exercise: walk 3-5 miles daily for past 14 years; spotty exercise before that

children: 3, first one when I was 29

breast feeding:  yes, 1 year each kid

DES: nope

stress before dx: lots of nonsensical anxiety for past ten years, major real stress last two

family history: no

BRCA: no

breasts:  small, dense, cyst removed 25 years ago in good breast

blood pressure: freaky low

cholesterol: good

diet: childhood filled with processed food and transfats, none in adulthood but could eat a few more veggies each day

Maybe it was the wine and birth control pills that got me, but it's probably just that I'm alive and have had boobs.   

Claire, it is weird, but true.  I had the same feeling of dread; like I knew something really bad was going to happen.  I attributed it to depression, and I was going to make an appointment with my PCP, but I found my lump and made the appointment with my gyno instead.  My sister gave me a surprise 50th birthday party on Fire Island, and I was in a fog the whole time, couldn't enjoy it because I knew something was up.  Really freaky.

I was not even close to menopause either.  I went off bcp in January, 2013 and was showing no signs of slowing down.  Chemo has halted my periods, and my doctor says I will probably be in permanent menopause after, but I am not so sure.  I started at 10, and my ovaries seem content to keep on going. Because I am BRCA negative the docs don't want to remove my ovaries.  They say menopause will do the same thing, but I don't want ILC creeping in there, and I want them gone.  I need to figure out a way so the insurance would cover it.

I don't know if any of you have seen this; a study that suggests a correlation between root canals and breast cancer.  I don't know how to post a link, but I'm sure you all can find it in google.  Anyway, this study in England looked at the number of women who had had root canals and then developed BC.  I had a root canal 12 years ago, and over the past three years had all sorts of periodontal surgery on my gums.  The study suggested that bacteria gets into the root canal and the body is fighting that bacteria and not cancer cells.  I don't know if I buy it 100%, but it was interesting theory.

its interesting to read all of everyones info.

I was 46 at dx I was told I had cancer for probly 7 or more years so i was in my 30's when it started. iT went un- noticed somehow even though I had been mammogrammed every year for 10 years I also had a few ultrasounds on breast also did not show up. at time of dx I had 9.2 cm tumor in breast 1 cm and 2 cm tumors in nodes and 17 cancerous nodes. I was tired but also my business was very busy so I am not sure which wore me down.

my cancer all of a sudden became aggressive I had a lump that you could actually see on my breast and it grew fast. and still did not show on mammo or u.s.

I did notice in the about 6 month range before dx that I craved sweets at odd times of the day and not just period time. it was a strong craving for sweets. my hair started to feel like straw when wet which is odd because I had never colored or highlighted ot permed my hair and use no hair products. I have virgin hair.

I did take birth control pills for about 10 years.

got period at 11 years old.

got pregnant at 28

no family history of any cancer.

i was a healthy weight drank green tea ate blueberries stayed active 

Hi All - I've been lurking on this topic for a bit and decided to add my info.

Dx at 41, ILC, 4cm, no nodes, grade 1, ER+/PR+, HER -

I'm tall and on the thin side and always have been. Super dense breasts.

Bilateral mastectomy - one prophylactic

Family history - yes (mom, premeno BC, not sure what type - she died when I was 20)

Menarche: 15 (I was a serious athlete),

As someone else said, crazy low blood pressure

No birth control pills ever (mostly because I was keenly aware of my high risk status)

Active/fit, though not a super athlete like I was as a kid. 

A good job, not super stressful.

Light/moderate drinker (glass of wine with dinner most days since I was in my late 20s). I've stopped, though I'm not sure it's entirely reasonable.

Two successful pregnancies - first at 30, second at 33. Breastfed both for at least a year each. No miscarriages or trouble getting pregnant.

DES daughter? Possibly. I was born in early 1972, and all the literature says it was banned in 1971. I might not have been directly exposed to it in utero, though my mom had significant issues staying pregnant and had had several miscarriages prior to me (her only successful pregnancy), so I'm pretty sure she would have fit the profile of someone who'd have gotten DES for those prior pregnancies in the late 60s, 1970. 

No significant health issues prior to this, though shortly before diagnosis I'd had some arthritis issues flare up (which are now gone post surgery)

From menarche to my early 20s, my periods were irregular, then became regular in my early 20s, but they were long-cycle (32-35 days), became a little shorter in my early 30s (fairly typical 28-30 days) and then really shortened up in the last three to four years (24-25 days). I'm convinced the short perimenopausal periods are a sign of too much estrogen

I had my first mammo at 35, and then several afterwards. Last mammo in summer 2012 showed nothing. Ob/Gyn felt lump ( thickening) in my annual check up in the fall and sent me for mammo. Again, they saw nothing on mammo, but US showed something to the techs. BS did ultrasound and said hmmm. He then offered to schedule me an MRI or do a biopsy right there in the office. I said biopsy, and here we are. 

Surgery was pretty easy (no recon), and I'm waiting for my oncotype score (and am on tamoxifen in the interim. MO is pretty sure I won't need chem.) Then probably radiation as the margins were close. 

Tamox has been mild so far, just warm waves.

Anyone else with large-ish tumor but neg nodes? did you do chemo?

no root canals  here  (only ever had 3 fillings) 

Definately Very low BP since a teenager eg when pregnant dropped to about 80/40 !! But always hovered around 95/60. 

Momine have you got any theories yet ? 

I am thinking 49, stress and EtOH -

I  am also thinking a survey of stage IVs to see % of ILC vs IDC ( and TN) and also the % from stages I , II and III that go on to actually develop  stage IV assuming chemo, rads and hormonals have been done as needed ( my gut says about 10%, 20% and 30% respectively) 

There seem to be soooooo many variables once you throw in +- nodes +- ECE, margins etc etc - hollanders example is extremely sobering !!

Smlvr--it took me over a year, but I finally found an OBGYN who agreed that the ovaries should come out.  Oncologist was never for it.  Once the OBGYN decided to do the surgery, I had no problems with the insurance company.  I am so glad that I had them out because two months later, I saw a new oncologist who said that probably the cause of my breast cancer was use of synthetic progesterones as birth control so to the extent that my ovaries could have been making progesterone still, I was glad to have them out.  The doctors only look at one type of estrogen hormone, estradiol, in the blood and then declare you to be in menopause.  

Maybe it was easy to get through my insurance company...they don't even seem to realize that my breasts are gone.  Sent me a notice today that my mammogram is two years over due, and that small cancers can be picked up on the mammogram with early detection leading to better outcomes.  I wanted to throw up.  

Our stats are so similar:

dx at 49

menarche @ 13

Very low Blood pressure - 70/40 (hypotension)

very dense breasts - large

Birth control pills when I was a teen and in my 20s.

Excellent Health, no medical conditions prior to dx.

Athletic, in great shape, worked out daily

Healthy diet - low carb.

heavy drinker, but not in the 10 years prior to dx

bouts of depression, anxiety.

Very high energy, single working mom, 

Son born at age 31.

high-tech, very, very stressful job entire 6 years leading up to dx. 

Perimenopausal for 3 years prior to dx.

No family history - adopted.

had mammos and ultrasounds of breasts every 6 months - fluid and cysts. Told everything was benign.

Had a sixth sense something wasn't right, everything in my life was a huge stress and on verge of nervous breakdown. In the back of my mind I intuited that the story would turn out to be cancer. I just never imagined it would be so advanced. My tumor was 12.5 cm. Yes, misdiagnosed by lots of specialists and docs who I believed. My psychic side ruled in the end. (I hate that my psychic abilities always are strongest with the negative, dark side). 

If you ask me what I think is the major factor in cancer dx, it's stress. The Israeli's believe this in addition to a non-alqualine diet, and I agree. I have eliminated all stress from my life. I meditate, pray, and have slowed way down. I don't let things bother me and I think this has a huge factor in my remission. NO STRESS. 

My son is away in college now and I'm an empty nester. It's a great life. I don't think or worry about recurrence other than to remind myself that I have to live as though I have a short time left and get my bucket list out of the way. It's fun. The question now is "how are we're living" and not "how are we dying".

Hugs,

Kat

gemini4. I could agree more. 

Amazing how alike we all are. No root canals; really good teeth so far (knock wood).  But dense breasts--with no warning that dense breasts should be examined more closely and in different ways than a regular mammogram.  I think that's what did it for me--lack of knowledge so I could be proactive earlier than I was.  

I asked my gyno NP why she exclaimed over my dense breast tissue during an exam years ago...and she never said anything out of the ordinary that made me think I was at higher risk of not finding BC involvement.  Had she shared that, I might have paid more attention even when my regular mammos were clear. 

Dear all

new here and first public post, if there are some mistakes with my English, please ignore it because its my second language and still working on it....lol

here is mine:

no family history, at twelve  had first period, had my only daughter at 28yrs, breast feeding about two months, pretty healthy all the time, and very active person. one thing I noticed that like some of the sisters here, I barely catch cold, no matter what, some times even all my co workers were sick one by one, I am always the only one never got it. before I was so proud of it, now I think that is something wrong with my immune system. they are not fighting properly.

dense and small breasts, the thing pi$$ed me off, I barely have breasts and i have breast cancer!

Iots of stress in the past 15 years, from marriage and job.

Had problem with my periods for years since after had my daughter. always heavy bleeding, and painful that have to take meds. Had IUD inserted last year for half year then took it out on Sept. had mammogram each year since 2008, missed 2012, then found in 2013 march, even in Jan. 2013 my mammogram showed nothing changed, but I found a lump in my breast and went to my gyn who referred to BS and did biopsy, turned out BC..... I found that my temper was really bad and was really easy to be irritated before my DX...

best wishes to all

Ladies, this thread is going somewhere so very interesting.  Dense breasts, stress, and overall health.  So I will add my 2 cents worth on these topics if you don't mind.

I hope that the answer to dense breasts is improving the current imaging....not sending more of us for MRIS.   But until we have better imaging, we ILCers need to advocate for diagnostic mammo/ultrasound with alternating MRI.  MRI's are a double edged sword and not without their own risks.   Tomography offers great hope.  In the future, I am hopeful that there will be other reliable, safe screening methods so that all women of all ages will qualify for breast cancer screening and it will reliably find our ILC tumors before they get so big and nasty.

I have read with interest the connection we draw between cancer and stress.  I am definitely one of those people who over-function and definitely had periods of time in my life when I was very stressed, unhealthfully so.  I even have pictures to prove it.  Ha!  The silver lining for me in this heinous disease is that I have stopped overfunctioning for underfunctioning people.  Life is really good now on that front. Who knew?  

And as far as overall health...I too am one of those people with perfect attendance....during school, work, etc.  nothing could take me down.  I wonder if the high performing personality is what gives us the illusion of good health, meaning that we have a cold, the flu, etc....we just ignore it and climb the ladder.  Just a thought.

Anyway, I really enjoy this thread.  It is so interesting to hear your stories.  I wish there weren't so many of us!

Love, MsP

Hi all! 

I think this thread is awesome! Thank you MmeJ for starting it!  I've been lurking since the beginning and thought I should chime in.

 I have a strong maternal family history of cancer but not breast cancer.  I was diagnosed at age 44.  I have two children, 14 and 8, both breast fed for 6 months each.  My first period came just shy of my 12th birthday.  Periods were never regular.  Was on BCPs off and on 10-15 years.  I had the Mirena IUD for 5 1/2 years up to date of diagnosis.  Had it removed ASAP! I have very dense, small breasts.  I have had two root canals prior to diagnosis.  One of which caused an abscess because the dentist DID NOT finish the root canal!  I had that tooth pulled.  Found out that abscess is what had been causing my sinus infections for years.  My BC tumor was on the same side as my root canals.  I do not necessarily believe this caused my BC.  I also loved my glass or two of wine in the evenings prior to diagnosis.  Scared to drink now.  I lived in the Central Valley of California for ten years, in the LA area for three years, and then in Cairo, Egypt, for 8 years up until the revolution in January 2011.  I feel the environment may have contributed to the BC.  Cairo is highly polluted and the tap water is heavily chlorinated, LA is highly polluted, and the Central Valley is full of pesticides from farming.  Can't think of anything else to add right now.

Hollander, you've touched my heart.  Thank you for sharing your story. 

Hugs to all!

~ Amy

Katarina, my onc does tumor markers, but she never volunteers the result of my blood work at each visit nor has she ever had a discussion about how she uses them for surveillance.   It really bothers me that I have to ask for and drop by to pick up a hard copy of my blood tests the day after my test/visit.  My onc never talks about nutrition or exercise or mental well being....all things that I think are important and that I would like to hear my doctor "rah, rahing"   I had to ask her why she chose Femara for me.  I hate having to ask important crap like that.  I have now learned to tell her how many questions I have at the beginning of the visit...so that she doesn't make me chase her out of the examination room.  And I limit it to 5 or less.    I am retiring soon and will be moving to another city....otherwise I would have already broken up with this onc.   Thankfully, my tumor markers have been and are in normal range, so there have been no issues to date.  I definitely know what kind of onc I want in my new city and it isn't this type.  (Sigh)  Sorry for the extra info you didn't need or want.

MsP