ILC - The Odd One Out?

bc101- Thanks. It's no fun, BUT it's hard to complain when I so narrowly missed true Stage IV cancer. My tumors range in size from only .5cm-1.9cm, so it was pure luck I found it before it moved outside the nodes or that little breast tissue. I noticed the skin on my underarm was a little tender when I was putting on deodorant one day, which was random, but I honestly thought nothing of it. Then, a week later in the shower I felt a lump in my underarm that seemed a little large but not that different from most other normal lumps, but it wasn't sore or tender, so I immediately went to my doctor. It is ILC, and in fact, my drs say it's absolutely a recurrence of my previous cancer. As for scans, because I'd had thyroid cancer in 2004 before the ILC in 2007, my doctor did yearly full body PET scans for 3 years, which were all clear (the last one was 12/2011). As for genetics, it's interesting, none of the genetics counselors so far have thought I'd test positive for anything. They've continued to think, looking at my family history, we have a genetic mutation that's still unknown.

Lily55- I can't believe I didn't think to mention stress. I'd say that at least until a few years ago, my life has been incredibly stressful as well. It's been one thing after another since I was very young. I'm sorry to hear things have been rough for you and hope they've improved.

I just had a full hysterectomy 2 weeks ago, so I can now confirm that I definitely had endometriosis and a tilted uterus. That's just fascinating.

Something I had not thought about in more than 20 years until I just read this. I remember my doctor mentioning that my cervix was unusually positioned when she was doing an exam. I think she meant it was tilted too...

What's the connection to the tilted pelvis - I have one too and when I was first pregnant 21 years ago they wanted to put a stich in so I didn't miscarry. I've also got something like endometriosis but I can't remember what it is called. Something triosis. Means my uterus is bulky in some places and thin in others. I'm just interested in the tilted uterus thing please???

Don't think I had a tilted uterus - it was removed when I was 28 for severe endometreosis!  I also have low blood pressure, although wouldn't say "freaky low" lol.

Another tilted uterus here with ILC at age 48, father died of lung cancer.  I also gave birth later in life. I think all this information is fascinating. It is too bad there is no one collecting our commonalities for future study of ILC.

Okay guys, this whole "tilted uterus" business is bizarre. Only 10% of women have this, and only 10% of breast cancers are ILC, so it is very strange so many of us would have both. This is fascinating.

TaniaE- You very well might have had endometriosis. A lot of women's only symptoms are heavy and very painful periods, and I think it's fairly common for those women not to know they have it unless they accidentally find out through surgery, etc. I was only diagnosed because it was also around my bladder, so I had pain constantly. Also, pregnancy cures endometriosis, so if you've been pregnant it's probably gone. If you ever have surgery in that area, ask the doctor to look for scar tissue that would lead him to believe you had endometriosis at one time.

Katarina- add me to the list of ILC women with lifelong lower than normal blood pressure and temperature. I didn't know about that! 

Also, I want to make a comment about stress. There's no doubt it's VERY destructive, but when I mentioned the almost constant whirlwind of stress in my life to my doctor, she said of course it was probably a factor, but stress doesn't typically create an illness out of nowhere (especially something like cancer). It instead acts like a catalyst to "kick off" disease. She even went as far as to say even without stress many people would still get a lot of the same sicknesses, because they are predisposed to them in some way, but they get sick farther down the road in their lives. So, it makes complete sense many of us can point to extreme stress as a factor, but my guess would be it's not specific to ILC. 

We actually have an example in our  family that supports the information above! All of our doctors believe low stress and healthy living are the reasons my grandmother, who has a very easy-going personality, a smile on her face as long as I've known her (nothing bothers her), and has always led an extremely healthy lifestyle (she's exercised every day of her life and continues to get in trouble with the staff at the gym for trying to do too much! lol), wasn't diagnosed with what is obviously a hereditary breast cancer until she was 88 years old. Every other women in our family has been diagnosed premenopausal, including her 4 sisters!

Hmmm, I wonder if there is a connection between a tilted uterus and not being able to conceive....so, therefore no pregnancies=higher risk for breast cancer? My DH and I were not able to have children. 

Another tilted uterus here, and I had cervical dysplasia, which was tx with cyrosurgery at 29, then developed endometrial hyperplasia and had uterus removed at 39...then ILC at 56,  this is very interesting. I had 1 child, at 24 tried another for about a year but no luck (thank God, I got divorced). My mother on the other hand had a tilted uterus, 5 children and no BC, died from heart disease at 74. Her mother and 2 of her 3 sisters and the daughters of those 2 sisters had BC. I got tested for BRCA 7 yrs ago and was negative, will get the latest testing as soon as I get thru rads.

i was on birth control from my mid twenties until diagnosis at 50.  Much too long, and I feel that was a contributor.  I also had children late (29 and 31) and breast fed them both!  Don't know about my uterus, but I was under severe stress in the years prior to DX.  My husband lost his job, we had family issues, and had to deal,with our teenagers' emotional issues.  I know doctors don't like to say stress is a contributor, but I believe it is, as stress releases hormones in our bodies that are chemicals.  Also stress caused me to,eat and drink more.  Also bad.  Now I don't let anything bother me unless it is really bad.  Negative for BRCA 1&2 also, but BC is in my family, so there is definitely something genetic out there.

Fascinating. Another tilted uterus. Always thought it was due to my mother having taken DES while pregnant with me. Had terrible menstrual pain until pregnancy. No difficulties getting pregnant and had four normal pregnancies and deliveries. Had a hysterectomy in 2008 due to huge fibroids, BC in 2010 at age 49. Used the pill for less than a year. Dad also had prostate cancer. 

No tilted uterus, no family history of breast cancer and little family history of any cancer (paternal grandmother died of  some sort of "stomach" cancer in the early 1950's)....leuteal phase deficiency which resulted in multiple miscarriages....required progesterone to sustain pregnancies.... and infertility before my last child who was a clomid baby....3 children all breast fed (close to 5 years total)....Only connection I see if that I had hormonal inbalances...BUT...I'm a cynic...I kind of just believe that I got breast cancer cuz I am female and I had breasts!!!   Hopefully one day we will know more about breast cancers!!! and that my daughters will never have to go down this road...My girls are 16 and 28 and my son is 25.  

Karen and jpsgirl, it is so good to see you posting and that you are thriving 8 years out.  Thank you for giving us hope.

Thanks Karen and jpsgirl on checking in and letting some of us newbies know how your doing. As smrlvr said it gives us such hope and congratulations to you both. Just wondering if there were any lifestyle changes that either of you ladies made after diagnosis? 

JPSgirl - congratulations on being 8 years out! That's awesome - I can't wait to be where you are now. 

I'd love to know - does it get better .... all the worrying? The current standards for no follow up scans or tests are the thing that worry me the most. It sounds like you have had mammos and MRIs yearly. I'd also like to know what kind of treatment you had. 

Thanks for posting!