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Dori's Health Status

(aka "The Organ Recital")
Last updated: 1 November 2001

It's gotten to the point where some people know about some of my current health issues, and some people know all about it, and some people don't know anything at all, but should.

So I figured I'd write it all up in one web page, keep it updated, and just point everyone here. I don't really have the physical or emotional reserves right now to keep track of who knows what versus who should know what. This will be in chronological order, so if you've read this page previously, new stuff will be at the bottom by date. Or, just look for the little "new" icon.

I was discussing this all with a friend the other day and gave her the complete chronological story. At the end, she said, "Next time you tell someone this, please, start off with, 'I don't have cancer.' Please." So, to start with, I don't have cancer.

Here's the rest of the story:

30 September:

Felt a lump in my right breast. Panicked. It being a weekend, though, there wasn't much of anything else I could do, so I continued to panic.

01 October:

Called the doctor first thing Monday morning and made an appointment for Thursday afternoon, October 4. Found out that October was National Breast Cancer Month and felt extremely trendy, which only lasted until I panicked some more.

Thanks go out to Jean, who told me back in August that because I had skin cancer (basal cell, surgically removed, nothing to worry about) then, I was safe from getting any other type of cancer in the future. I don't know if that's true, but I'm holding her to it.

04 October:

Visited doctor. He agreed that based on my age, general health, medical history, lack of breast cancer in my family, etc., it was unlikely that I had breast cancer. He figured that it was probably just a cyst, so he pulled out the large needle and attempted aspiration (standard procedure for a cyst). Unfortunately, he got nothing (nada, zip) this way, which is A Really Bad Sign. He had his scheduler Lisa (my new best buddy) call and get me a mammogram scheduled for early Friday morning. His guess was that the cyst (if that's what it was) was, at this point, about 3 cm x 4 cm.

05 October:

While I'm normally not a morning person, it didn't hurt that I had an 8 am mammogram appointment, 'cause I sure didn't get any sleep the night before. Can you say stressed?

The mammogram went about as well as I'm told such things go. There was a funny spot on the x-ray just where I felt the lump, unsurprisingly, so the tech asked if I had time just then to get an ultrasound. Hey, if they could fit me into their schedule, that was fine, so she went, talked to the ultrasound tech, came back and told me to get prepared to be slimed.

The ultrasound tech looked at the images and said that I didn't just have one cyst, but a cluster of them (hey, so I'm special!). That was the news for the weekend, so I went home and relaxed about not having cancer. Unfortunately, I hurt, although my guess was that that was a result of the combination of the attempted aspiration and the mammogram.

08 October:

Follow-up doctor visit, to talk about the mammogram and ultrasound results. What the ultrasound tech didn't tell me was that, along with having a cluster of cysts, they're all enclosed inside what my doctor referred to as a "rind." So now, I basically have a kumquat in my breast. Consequently, needle aspiration isn't possible anymore and I need a lumpectomy. The doctor says that he wants it to happen "This Week," which is just fine with me as it's still hurting.

I told the doc that, and he says that may be because it's grown (in just the last four days!) and he now thinks that it's 4 cm x 5 cm and the surgeon will have to remove a lump about the size of a golf ball. Oh yeah, and because it's grown, I need a specialist. So now Lisa (remember Lisa? My new best friend?) will have to find me a surgeon.

So Lisa starts trying to figure out what surgeons in town take my insurance and can fit me in without too long a wait. She finds Dr. Mucci, who's out of town, but his receptionist says that he can see me on Monday, October 15, and that he'll take CIGNA. Dandy. That's longer than the doc or I wanted to wait, but a couple of days don't matter too much. So that's scheduled.

Spent a lot of time researching this on the net. Came across two pieces of contradictory data:

Consequently, I decided to create this page, so there'd be something out there for someone to find in a future search. And that way, it ain't going to turn out to be malignant, right? Right?

09 October:

From experience, I've found that the only way to be sure that CIGNA covers a doctor is to ask them directly. I do that, and find out that no, Dr. Mucci isn't covered. Bummer. So, I call Lisa and give her the half-dozen or so surgeons that are covered and practice within a 25 mile radius. She says she'll see what she can do.

10 October:

Lisa calls back, and says that the soonest she can get me in to a doctor from that list is October 22 (remember, my GP wanted this out This Week). I say, okay, if that's the best we can do, that's what I'll do, but remind her that the pain ain't going away and that the doc said himself that it was getting larger all the time. So, she scheduled me for another attempt at needle aspiration on October 11. Also, I need to cancel that appointment with Dr. Mucci.

11 October:

Needle aspiration scheduled, but no, that wasn't the way things worked out.

You know how when you're riding a roller coaster, and you think that you're nearing the end, and all of a sudden you take a really sharp turn to the left? That's what today's been like.

Nope, no needle aspiration. Went in to see the doc. He examined the lump and says that he doesn't think that it's getting any bigger. He also says that, now that he's thought about it, that it's probably not a cyst at all. His guess is that it's solid and has been all along, and what happened was that on Oct. 4th, when he tried to do the previous needle aspiration, he just stuck the solid lump twice (which is why he didn't get any liquid). Then, when I got the ultrasound on the 5th, the two liquid filled areas that they saw were just bleeding from having been stuck by the needle.

His current guess is fibroadenoma (which I made him write down so that I could look it up). Regarding the pain, his recommendation was to take more ibuprofen, and if the lump starts to feel larger or so painful that ibuprofen doesn't help, call him again. In addition, according to my GP, the surgeon will be removing a lemon or lime-sized chunk. I reminded him that he'd told me just a few days ago that it'd be only golf-ball sized, and he waffled. Jeez. So now, I'm hoping for the kind of surgery that will take tissue out of my breast and replace it with fat moved up from my stomach. Hey, I gotta look on the bright side.

So, the only current cause for panic is that this page says that breast cancer is almost 4 times more common than fibroadenoma for women in my age group. And of course, nothing that's happened so far is able to distinguish between the two. I'm sure I'll be able to find other reasons to worry, but that's the current winner.

So, that's the status, at least until I see Shapiro in a couple of weeks.

I remembered to cancel the appointment with Dr. Mucci. And everyone who's sent me nice email or blogged get well wishes for me--thanks!

18 October:

Thanks for all the well wishes from everyone. The outpouring of love and caring has been wonderful. What's been truly amazing, though, is the amount of info that I've received via email as a result of this page. One person made a point of telling me that both her mother and a friend had been to Dr. Shapiro and thought that he was THE BEST (and that's a direct quote, btw). A considerable amount of how I do medically depends on how much I trust my caregivers, and that one note from one woman has gone a long way to relaxing me into this process.

Tara Calashain helped today by sending me this info on a new technology for fibroadenomas:

Both are good news about a new treatment that involves freezing the fibroadenoma instead of cutting it out. Or in other words, a 20 minute, in-office procedure instead of a visit to the operating room. Works for me. I've printed the info out and I'll be taking it with me to the doctor's office.

In other news, the surgeon's office wants me to bring in the films from my mammogram and ultrasound, so I called up the hospital where I got both to find out their procedures. During the phone call, I found out that my doctor's office still hasn't returned them yet. <sigh> The nice lady at the hospital assured me that she'd be happy to call the doctor and get them back asap so I can pick them up before I go to the surgeon. I got the feeling that butts will be kicked, and I'm happy to have someone else doing it on my behalf.

I might go pick up the films on Friday instead of Monday, so I don't have to hit the road as early on Monday. And if that happens, I might scan in some of the images. Hey! Pictures of my breasts online! That's sure to do wonders for my hit count.

But really, there's no news. I'm not keeping anything from anyone. I won't know anything myself until at least early next week. It's the not knowing that's the hardest part for me.

22 October:

Examination by surgeon (Dr. Shapiro) scheduled.

Some good news/bad news in this appointment, but none of the bad news was really bad, thankfully.

The good news is that I like the surgeon, and I feel like he's competent and conservative (and in this case, I want conservative when it's my body parts that the guy is cutting off).

Bad news bit #1 was, of course, that my insurance was screwed up. Lisa (remember Lisa?) had neglected to fill out some paperwork, which meant that CIGNA wouldn't pay for the visit. And unfortunately, everyone at my GP's office was at lunch when my appt. with Dr. Shapiro was scheduled.

Thankfully, Kay (who works for Dr. Shapiro) is really good at working with insurance companies, and she got CIGNA to authorize one visit while we're waiting for the full referral to come through (note for the future: this was authorization 00000001x, by Deanna). So, no problems, just a little more stress (just what I need, right?)

Bad news bit #2: after I got to see Dr. Shapiro, he examined me, and had trouble reconciling the films with his examination. The mammogram and ultrasound say cyst, but his examination says benign tumor. Fibroadenoma is also still a possibility... hell, everything's a possibility when you have lots of data points, none of which agree with each other.

His recommendation: come back next week for in-office surgery, where he'll do a core needle biopsy. A core needle biopsy is different from the fine needle aspiration that my GP tried three weeks ago, in that the former takes out a chunk of skin that can be biopsied, rather than trying to get some liquid out of a lump that might or might not contain liquids. Or in this case, Shapiro wants to take out 3 chunks, in order to get good coverage of the area.

The whole thing should take under an hour, and the results should be back the following day. Based on the results of the biopsy, we'll decide whether or not I need to have the lump removed at all.

I stopped at a bookstore on the way home and bought Dr. Susan Love's Breast Book, which multiple people have told me is a must buy. I also called up Lisa and (hopefully) got the insurance mess straightened out.

I found out later today that there was some confusion about what I've written here, and I'd mistakenly given the impression that I was going into the hospital today. No, things don't move quite that quickly. If I do go in, it won't be until November, and the surgeon's working on ways to keep me out altogether (which is just fine with me!)

Thanks to all for the good thoughts and wishes, and please, keep them up for me for another couple weeks!

31 October:

Needle biopsy by Dr. Shapiro scheduled, with results to be returned November 1st.

The core needle biopsy went as planned, with probably a little more anesthetic required than the good doctor had expected. It's been my experience that the doctors want to use as little anesthesia as possible, which means that I've learned to yelp when things start to hurt. He was good about using more right away, though, which is about as good as it gets.

The one humorous part was when I said "Ummm... it's been my experience that later today, I'll get home, and find that the anesthesia is wearing off and that I'm starting to really feel some pain, and over the counter pain meds don't always help..." to which he responded, "That's why it's been my experience that I'll be sending you home with a scrip for pain killers--do you prefer Darvocet or Vicodin?"

Finally, a doctor that doesn't think that pain is healthy--yay! Some ibuprofen, a lot of ice packs, and a little bit of Vicodin really helped me through last night.

Hey, October's over, so it's now on to November.

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