I really don't. I feel like I did about 2 weeks ago, or two months ago. But not 2 years ago - when I think this all started... Settle in kids, it's gonna be a long blog. :)
Two years ago this summer, I dragged myself into my gyno's office. I don't have that magical Primary Care Physician I've heard rumors about, and that my insurance seems to think I need. I don't get sick. OK, once a year I get a cold, and if it happens to make it's way to my chest I'm in for a 2-3 week coughing and wheezing binge. Then I'm good again. Instead my weakness has always been hormonal. That was an easy enough fix in the early days: I just counted on my friends, the birth control pills. They kept my cycle normal and fended off that pesky other side effect: kids (babies, kids and grown kids aren't so bad, I'm just averse to teenagers.) The Pills were great for years. A decade, even. Then they began to wear off, and I had to hop from pill to pill as my crazy PMS symptoms began to rear their ugly heads.
*side note: every time I (and probably everyone else) switch pills, it takes about 9 months for my body to regulate. That means I would not know if a pill was truly working until almost a year after switching. That being said, it really wasn't that bad - I'm probably the only one that knew something screwy was ever going on with my body.
That brings me to, hmm... 2002? I went into my gynecologist for my regular exam and to discuss if my pills were ok, etc. (I think the pills were fine at this point.) She found the first of many, many lumps in my breasts. Turns out I have very dense breast tissue with a propensity for cysts. I had a mammogram to be certain it was a cyst, & had the cyst aspirated (they stuck a needle in and pulled out the fluid - it appeared to be benign. To me, it was gray and disgusting, but I'm not the dr here...) 6 months later a follow up diagnostic image (a mammogram just on the side where there is question) was done, and I was cleared. There was no breast cancer in my family in July of 2002, other than my grandmaw's sister back in the day. That was considered too remote of a connection, and things were left with me getting regular mammograms. (I was 29 in 2002.)
December 13th, 2002 - on a Friday, my mom was diagnosed with DCIS. Ductal carcinoma in situ. This is stage 0 cancer. The Stages run 0-4, 4 being the worst and the one you hear all of the horror stories about. Stage 0 means that the cells have begun to mutate, but are contained within the milk ducts. NOT invasive. (invasive frequently translates to chemo, etc) Mom chose to have a lumpectomy (removing of the cancerous area - there is most often no actual mass in Stage 0) and radiation. She got her first tattoo as part of that treatment. :)
My mom had breast cancer. She refused to "claim it" as she said repeatedly. This was one of her methods of fighting it - she wouldn't admit she had Cancer and she would kill it before it could harm her. She was in Oklahoma at the time, and my sister, Beth, was there to take care of her. I'm in GA. I offered to come out, but she said she was fine "it wasn't anything big." This sort of comment drove me nuts at the time. She had CANCER. Geez woman - stop living in denial. Funny how perspectives change.
Mom was right. (You might want to print this out, mom. Save it for proof.) She fought it. She won. She took her Tamoxifen for 5 years and has been cancer free for 5 more. She's 10 years out this year.
5 years ago her youngest sister got the diagnosis. I'm not certain I have all the details correct here - but I believe her original diagnosis was also DCIS - a stage 0 breast cancer. She opted for a double mastectomy. At some point in her treatment they discovered that her cancer was actually Stage 1 - and she followed her very painful surgery with Chemo. Loss of hair, muscles moved around her body to assist the implants in the reconstruction - and always still there if we needed her. My family is pretty awesome. 5 years out, and she's happy with her decisions about treatment and living her life.
A couple of years ago their middle sister was diagnosed. This was also around the time I started to notice something was "off." But we'll get into that.
I think middle sister was also DCIS - I need to verify this, I suppose, for my medical history. She also opted for the more aggressive treatment - double mastectomy. But since there were no invasive cells found in the pathology (ie. Stage 1) she was able to forgo chemo. I believe she is on the same 5 years of meds that her baby sister had to take - not the Tamoxifen mom used, but I can't recall the name...
That bring us to me, 2 years ago. I went into that gyno appt complaining of not "feeling right." The dr. should be able to diagnose that right away, right!?? No? Well, here were my "symptoms":
gaining weight (I'm very concious of what I eat, and knew that something was up there)
so very tired - unreasonably so
My hair fell out in very large amounts - 3 times over a 3 year period
Migraines were increasing - and my meds were just not working
I. Could. Not. Complete a friggin' sentence. Seriously. It progressed over about a 6 month time frame. By the time I went in, every sentence I spoke, I had to stop and wait on some word to come to my brain.
To start - we removed my Mirena. Due to the pills not really working, and the new breast cancers springing up in the family, I wanted a low hormone option. The dr. made this IUD sound magical. But when I went in 1 1/2 to 2 years later with my symptoms, it was quickly blamed and removed. I did actually feel a bit better. A million tests were also run. My progesterone was "at the level of a post-menopausal 74 year old woman." My adrenal gland was running on empty, my good estrogen was low, my bad estrogen was high, my dhea levels were off, I had autoimmune thyroid disease, and my cortisol levels were all outta whack. The dr said she was surprised I could get off the couch everyday. She began a vitamin regimen, supplements, a thyroid medicine and a progesterone creme. I was teaching fitness classes by this time, and thought she was a little kooky. But there I had it, the test results in black and white.
Little did I know, this dr I'd been to for a decade was training/learning/transitioning over to hormone therapy. She wanted me to follow her, and my insurance did NOT want me to. They refused to pay for it. And I don't spend money unless I have to. A great friend of mine recommended another dr about the same time my gyno transitioned over full time to hormone replacement. This new office has been wonderful - and may actually be saving my life.
I went in for a discussion. We covered my symptoms. I was sent to the endocrinologist who removed me from the thyroid meds - yes, I still have Hashimoto's thyroiditis/autoimmune thyroiditis but not to the point where I should actually be medicated. She immediately zeroed in on the lump I'd found last March. My previous dr had agreed to send me in for a mammogram, but the mammo dr followed up with an ultrasound and assured me that this "new" lump (they are truly hard to keep up with, but this one was obviously new or changed) was a stack of cysts on top of each other. My new dr scheduled an appt with my breast surgeon (I started seeing a breast surgeon after any questionable mammo's - pretty much every one I have has been questionable...). He came into the room with me, flipped a page or two of my chart and asked my why I was there. I'm going to cut this part short because it still makes me angry. Let's just leave it at the point where he told me to come back in for a diagnostic mammo in Sept - the 6 month mark, which is typical.
I brought Mark with me on this next appt - I wanted to be sure that I was just not being overly sensitive - and that the dr really was being crappy towards me. As soon as the dr finished up with the appt, Mark said "it's time for you to get a new dr."
Fortunately, the original dr I'd seen when all of this started (I'm still not sure why they switched me to the one so sorely lacking in bedside manner) is who I've gone back to. Much more pleasant and actually listens when I say there's something wrong.
This brings us, finally, to two weeks ago. I went in for my yearly mammo on a Wednesday. The mammo dr was out that day, and a very friendly dude came in and said he was covering for her. I was told that he had a question about my films, but that he was going to show it to the mammo dr the next day, as this was not his specialty and he didn't want to alarm me unnecessarily. This might alarm other people, but it's standard procedure for me. EVERY mammogram (practically) has needed follow up. She called me on Thursday and had me come in on Friday for a needle biopsy (stereotactic biopsy) I was also warned that the area of calcifications they'd found and were checking on was very far back - right by my chest wall, and that they may not be able to get to them with this procedure. But by golly, we tried. I was contorting into all kinds of crazy positions. Picture a massage table where you are face down - with your face thru the little hole. Then just imagine the hole is where your boob is and you have the stereotactic table. My boobie was hanging thru the hole and they used another mammogram smashing-type machine to try to get an image that would guide the needle to the correct location. Regardless of all of my yoga training, I was not able to get my tiny tata into a position that the machine could read.
The following Monday we were off to meet with my (new/old) breast surgeon. It was a relief to be back with someone that makes the appts so easy. And of course, by this time, I knew something was up. I had seen the cluster of calcifications on the mammo films and had done a bit of research. Calcification clusters tend to be a warning flag for DCIS. They are not the cancer cells themselves, but our body's way of saying "hey - something is wrong. Right here. Check it out." And so my surgeon did. She scheduled a surgical biopsy for the following Friday (just over a week ago.) Piecing together all the careful comments made by the various drs and technicians and combining those with the way that I feel, I was pretty sure it was going to be a minimum of a DCIS diagnosis. But I had to wait for the pathology. And wait and wait and wait. It wasn't until Wednesday - the latest I was told I would get the results, that it really started to stress me out. I just needed the answer so I could move on.
Just so happens I was in my new gyno's office for my yearly exam when I got the call. It is DCIS and I had an appt the following day (this past Thursday) with the breast surgeon to discuss lumpectomy and radiation, etc.
I have been considering and discussing double mastectomy for about a year now. I was pretty certain of what my choice would be, but we went into the appt with opens minds. Had the dr offered a reason that the more conservative treatment of a lumpectomy with radiation was a better path for me, I'd have taken it. But she was completely on board with my choice of double mastectomy with reconstruction.
Some people seem to have a problem with my choice. Hmmm. Key words: My Choice. But just to clear the air, I'm going clarify why this is the best treatment for me.
I am 39 (the biopsy was done on my birthday) - this means I potentially have 40 -50 more years for this disease to come back if I leave any breast tissue. Since it only took 37-39 yrs the first time, and my risk goes up significantly for recurrence now that I've been diagnosed, I'd say it's pretty likely.
My mom and both of her sisters have already had this disease - and I've seen each type of treatment/repercussions - so I'm not going into this blindly.
If I choose the more conservative treatment of lumpectomy followed by radiation, and I get a recurrence on the same side, I have no choice but a mastectomy. You can't do radiation in the same side twice.
The biopsy was done in a manner that took a significantly larger section than displayed on the mammogram. This was done to be sure that it got out any potential cancer cells. And yet it did not get them all. The margins were not clear. There is still cancer on the left side - and the kicker is, there was no indicator that cancer was in this secondary spot on the margin. So how do I know there is not cancer 3" to the right? Or 3" further away - in the right breast? I can't know this. The only way to be sure the cancer cells are all gone is to take the cells out.
I could choose a single mastectomy. No calcification clusters were found in the right breast, so maybe I don't have cancerous cells there. No calcifications were found on the margins of the lumpectomy either though, and cancer cells were found. So maybe I do have it in the right breast. The only way I could find it, other than to remove and test the tissue, is to let it continue to grow until it becomes a mass that is locate-able. That just seems silly. I could have to go through all of this again down the road. Another surgery. Six more weeks of recovery. Plus all the years of mammograms and checking and rechecking. My body doesn't NEED more mammograms. It's had it's fill.
So I have a plan. I will meet with 2 different plastic surgeons this week then schedule surgery. Then I'll spend 6 weeks recovering and go on with my life.
I have not been secretive about this diagnosis. I don't see any reason to be. One of my sisters has already gotten a mammogram and another is one her way. That leaves 2 more that need to get in the game. One is too young, and can wait a bit - as long as she stays lump free. The older one (you know who you are, missy) needs to drag her butt in and be tested. So I will continue telling my story - the story of a 39 year old fitness instructor that pays attention to her diet and has a very active lifestyle. A 39 year old that has spent the past decade taking care of herself, and the past 2 years teaching others to do the same. A 39 year old who's been diagnosed with cancer.
Go get tested. Have a baseline mammogram at the very minimum. Have an ultrasound if the mammo is questionable. Have an MRI if it's an option. And above all - learn to listen to your body. Question your dr's. Learn what is "right" for you. And if, heaven forbid, you are diagnosed with cancer, do what is right for YOU. Don't worry about people that disagree with your choice of treatment (and trust me, there are plenty out there with very strong opinions as I've already learned 5 days in) - just do your research and then do what feels right for you. Take care of you so that you can be around for others. Take care of you because you are your best healer. Eat healthy, natural, local foods. Exercise. Exercise exercise exercise. Pay attention to the clues that your body gives. And live everyday like it's your last - even if you are never sick a day in your life. Enjoy it all.
Finally, because I've chosen a double mastectomy, and as long as my pathology doesn't come back with a more advanced/invasive cancer, and as long as my sentinel lymph nodes are clear, I won't need radiation, chemo or Tamoxifin. I will never need another mammogram. I won't have to wait on it to show up. I can move on. I can finish culinary school. I can share my story with other people in the hopes that they too will be able to catch this disease early and stop it in it's tracks. I will go on and follow my dreams. I will sail into the sunset with my prince charming. ♥
