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Jul
28
You’d think it would be easy to resist turning this into The Breast Cancer Blog, all Breast Cancer, All the Time. I’ve got shreds of magazines, newspapers, printed out articles, city newsletters, trade publications and ancient Chinese secrets all around me, full of talking points on everything but breast cancer.
Problem is, you can only ignore what you can ignore. And even then, that ignoring sinks deep into your soul and affects everything else you do, whether you realize it or not. This growth might be organic, much like a benign tumor, but it can infest and strangle you like a sapsucker on a tree nevertheless.
So, I’m thinking about starting a separate blog to keep up this side of my thoughts, but for now, I’m posting this stuff here, because I just don’t feel like starting another blog.
There are those people who might find it appalling to be as open as I may be about my circumstances. But maybe in some way you’ll turn your head and peek through slatted fingers to read the posts, despite yourself.
Others might find it a relief, living through it the same way as I am.
But my real hope? The real reason I want to post these posts? Is that I’m praying for people who live what I’m living to tell me what it’s like for them, how it’s gone or how it goes for them.
Here’s where I describe getting my first MRI, as ordered by the physician’s assistance to the breast cancer specialist I see once a year.
Here’s where I mention that it’s cool to be hot when you’ve got the breast cancer family history I have.
Here’s where I describe the incredible guilt I felt over not taking better care of myself after I learned that a woman I barely knew had died of breast cancer at the age of 47 just as I’d left town to go east for Passover.
Here’s where I rag on silicone implants.
Here’s where I thank God for four year old boys who want to see if my boobs are real.
Okay – so let’s get started.
So – I went for a mammogram after the person I didn’t really know died. I was late in getting it done, and I hadn’t seen the breast cancer specialist for over two years. My fault. I admit it. Nothing else I can say. Not gonna lie.
Now, I did get my mammogram last year, I just didn’t do the breast cancer specialist appointment, and the mammo was normal (as it was this year too). The one issue that evolved was with insurance (any surprise there?). My OB/GYN wrote a requisition for a routine mammo but the specialist’s PA wrote a requisition for a diagnostic. I didn’t know the difference and figured I’d go with the diagnostic. I did ask about the difference when I arrived for the appointment, but they didn’t really explain it to me – maybe they weren’t sure either? Or I didn’t ask the question properly.
So, naturally, it’s not until the bill arrives that I learn that the diagnostic isn’t covered completely by insurance. Now, I’ve been getting mammograms since I was 28 and I have never paid for one (thank you – that’s how it should be in my opinion). So this was a shock to me – why did I have to pay?
Well, diagnostic mammos require a radiologist to look at the films on the spot and then re-take images then and there if they see something that they don’t like, like a shadow. And in fact, that’s what happened, though no one really explained that to me (this was two years ago, btw).
So I make a lot of calls and eventually realize that we just have to pay it, but that this year, I have to figure out which mammo I really need – because I don’t care if I have to pay for it. With my family history, I want the right one done.
So, in December, I got the requisition from my OB for the routine. And I contact the specialist’s office and they say it’s up to me. So I go for the routine. And I had that done and it was fine.
But, after I had the mammo done this year, I had my yearly (which I skipped last year) appointment with the specialist’s physician’s assistant, who is excellent and with whom I’ve met a few times since seeing the specialist (which started in 2002 when I turned 40). And she talks to me, checks me out, shows me the mammos from over the years (that was fascinating – to see how and why your breasts start to sag, physiologically? wild) and so on.
And then she says, well, you know, with your history etc., you should get an MRI. Insurance may not pay for it, but they might. We don’t know from case to case.
Okay – I’m lucky and I’m desperate – I am not turning down the MRI requisition and I will find the money to pay for it. Because I just want to know when I’ve got the damn thing.
So we schedule it, I go for it, as I wrote a couple of weeks ago.
And then I wait for the results. Which I got today.
A refresher course in Miller cancer situses 101:
1) Maternal Grandmother: dead of breast cancer at age 52
2) Mother: diagnosed with breast cancer at age 44, double mastectomy, no radiation or chemo, alive and well
3) Maternal grandfather’s sister (my mother’s aunt, my great-aunt) deceased with breast cancer, in her 70s
4) Maternal grandfather’s sister’s daughter (my mother’s first cousin): deceased in her 50s of bone cancer
5) Maternal grandfather’s sister’s granddaughter (my mother’s cousin’s daughter, about my age): diagnosed with breast cancer in her early 30s, has treatment – I forget what exactly
6) My mother’s brother: currently undergoing chemo for his fourth diagnosis of cancer in the last few years (with his third and fourth occuring since Jan. of this year)
In 1998 or 1999, my mother tests negative for the known gene mutations and the genetic counselors we consult say that there’s no reason to test me (if my mom doesn’t have it, then it’s extremely unlikely that I would). We proceed to have a third child, which was contingent on whether I had the gene or not and, if I had the gene, I would have entered a head to head study on the preventative benefits of tamoxifan versus relaxafin.
My risk factors: all these relatives, Ashkenazic Jew, didn’t have first child until age 31, breastfed for about 6-7 months each child, normal onset of menstration.
My Gale score was either 1.5 or 1.7 which, I was told, put me in the 20-30% likelihood of getting breast cancer (this is when I was 36 or 37) which is far higher than the average woman with no risk factors, but still lower than the highest risk group. And thus, when I applied to be included in the Cleveland Clinic’s three year study of MRI/Mammo versus Mammo only? I was rejected because my risk was not great enough.
Talk about good news/bad news.
So, fastforwarding again, I schedule and get the MRI. They tell me that the results go to the specialist, not to me (whereas the mammo results do come to me, in addition to the doc calling if I have to go back – which I’ve had to do a couple of times over the years). And that they’ll be available by the end of the week. I think for sure I’ll get a call or I will remember to call. They only call you when there’s something bad, right?
Well, that was actually two weeks ago today, when the results should have been ready. And no one had called and I had it on my lists, but since no one had called, I kept putting it lower on the list. Until this afternoon when I was on a call-making frenzy. And I decided to call to get the results.
I got passed around a couple of times and eventually the nurse got on the phone with me. And, you know it’s tough for them when they’re reading the actual report to you because you know, they’re just not sure what the hell else to say, right?
“It says here, I’ll just read it to you, “plateau curve lesion on the left breast” “second look ultrasound and spot compression mammogram recommended.”
Chitchat, repetition of the same info and then these things:
“It’s quite common.”
“The spot compression can kind of hurt (or be painful – I forget which she said).”
To which I reply, “Well, yeah. Not much of a choice, now, really, huh?”
And then you get the “really, most of the time everything turns out to be benign.”
Yeah, I know, I know. Most of the time.
And then I say, you know, I’d just be so relieved if it was something, and I feel embarassed for even saying that but the fact is, I feel that way. It’s like a timebomb, going for these tests every year, get felt up every six months, pressed and compressed once a year.
Sure – compared to dying? No big deal. The fact that I have health coverage? Better yet. That I’m alive and raising my family? Excellent.
But you know what – when it’s you, it just doesn’t matter.
And that’s what the nurse said before we said goodbye.
Now that’s a good nurse.
Follow up procedures scheduled for a week from Monday. In the meantime, I get to vascillate between wishing I do, praying I don’t and obsessing about living with the uncertaintly for hopefully a really long lifetime.
(sorry for no hyperlinks; too late and frankly, I couldn’t find anything on plateau curves that I could understand; however, if someone knows something about MRI terminology, feel free to chime in)
By Jill Miller Zimon at 10:37 pm July 28th, 2006 in Politics
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13 Responses to “The "Not a Breast Cancer Blog" Blog”
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All I know is that I am a four year survivor. Yippee!
Muffet
Hey, Muffet! Thanks so much for sharing that. See? This is what I mean. That’s really, really helpful to me. Hopefully, if I ask you any probing questions, it will be only for curiosity sake – and not because I need to know.
Shabbat Shalom – we should both be asleep!
random thoughts -
insurance should have pay for whatever it is you need, given family Hx, risk factors etc. – since they don’t, all out of pocket is worth every penny (if that helps any).
Getting straight answers from medical professionals should be alot easier than it seems to be. That I can’t even begin to try and understand.
People’s lives and well-being, peace of mind, etc. are a very neccessary part of the picture – and should be treated as such.
I appreciate your timebomb analogy. The truth, one can deal with.
The unknown, drives us all crazy.
And this, IMHO, is the perfect place to discuss all this – I vote against a seperate blog.
We’re launching some positive energy towards Pepper Pike.
s+m
Jill,
I’ve had three MRI’s with contrast. The worst part was lying on my stomach with my arm outstretched for an hour. Not to mention those two holes in the table for you know what hanging thru. (Hey, we can’t be afraid of the truth here.) They gave me a copy of my films. I couldn’t even tell it was a breast, let alone anything else. They take films on a timed basis while the contrast is going in. A plateau curve has something to do with that. Changes in time.
A spot compression mammogram doesn’t hurt, in my opinion. An ultrasound is just that. I had an ultrasound guided needle biopsy. That was very cool. My surgeon, a woman who is now a survivor also, let me listen to the needle gun ahead of time so I wouldn’t be surprised. It makes a loud, shooting sound. The breast was numb. I could actually watch the needle going in on the ultrasound screen. She showed me what the biopsy needle had removed. She has been very upfront about everything. The biopsy took about a week. She called me at work to tell me that unfortunately they found what they were looking for.
Inherited breast cancer is more rare than we think. About 10% of all breast cancers are due to either the BRCA-1 or BRCA-2 genes. I had genetic testing as I had two paternal aunts who died of ovarian cancer, a real killer. I was negative. No matter what, 1 in 8 women will get breast cancer. Some kinds of breast cancer are worse than others.
My insurance carrier has been very good. Only a bit of a fight to get them to pay for the genetic testing, which is quite expensive. My genetic counselor (you must have one to have the testing), wrote a comprehensive letter to the insurance company, and they promptly paid.
Getting prodded every six months is not so bad to make sure you don’t have cancer. Once you are diagnosed, a lot more prodding goes on. And on. After five years of survival, I won’t have to see the oncologist every six months anymore. I won’t have to see my surgeon every year anymore. I won’t have to see my reconstructive surgeon every year anymore. Even with all that, I rarely even think about it now. I’m a survivor. I think you are a survivor the minute you are diagnosed. It’s a very large club that nobody wants to be in.
Now, if we can just come up with a cure. We’re doing a lot better with treatment. But some of those treatments are pretty unpleasant.
Maybe your doc will do a biopsy to ease your mind.
May G-d bless you and all our sisters and brothers (yes, men get breast cancer,too) who have this worry.
Muffet
Hey Scott and Michele – Thanks so much. I started to write earlier that I’m not doing this (writing these posts) for that – I think you know me enough to know that. But it’s just VERY helpful to me to do it and, as you can see from the response below, and I can tell you from a couple of emails I’ve gotten already, the information I’m getting from those who’ve gone through it is unparalleled.
Thank you, thank you thank you for the thoughts.
Thanks for this, Jill. As you know we’ve got a close friend dealing with it (second round of chemo), and too many other acquaintances and relations to list. Yes, it probably is benign, yes, that doesn’t mean you shouldn’t be reacting as you are, and yes, it is a great thing that you can and do blog so honestly about it. Such a gift you have … thank you so much for using it. And I agree with Scott, everything you mention having to pay for totally should have been covered, no question … it makes me so angry!!
Like the Bakalars, we’re thinking of you here … hold fast, stay steady. Be well.
Wow, Muffet. Thanks for the great information. It’s funny – my mom asked me if I learned anything about what they’d told me and I told her, well, not from anything I found through the Internet, but when I got firsthand info from someone responding to my blog post? Now THAT was helpful.
Thank you, very very much.
Thanks, Jeff. I appreciate your situation/experience with the whole thing and you know? It’s part of my life – that’s all there is. BUT…I do sometimes drift from that perspective. Mostly when I’m tired, had a glass of wine and am 27 days into the month.
Two years old but might be helpful…
here
Having been thru bioposies and what ended up being fibroid masses as well as the lupus and other stuff…Sometimes it really sucks…However the alternative is worse and you, like me are not the type to give up.
Thanks, Lisa Renee. I don’t really know why it is that having information from people who’ve been through this stuff, when it’s still all ahead and uncertain, makes one feel better. But it does. Thanks.
Wow. I don’t know what to say other than that I wish you good luck.
Thanks Jason. Just store the knowlegdge somewhere – hoping that you’ll never need to use it, you know?
[...] Thank goodness for hyperlinks so that I don’t have to bore anyone who doesn’t care about or care to know more about my connections with breast cancer. [...]