No lumps, some aches, plenty of fear.
September 21, 2012 8:38 AM   Subscribe

Routine mammogram yesterday, not entirely unexpected secondary mammogram and ultrasound next week. Please help me calm down about it.

Got the call this morning that they want another look at one side...the side I am worried about. That’s all they told me -- the caller was a nurse who I’m pretty sure doesn’t see films or anything. I’m 42, female, no breast cancer family history, and I’ve felt no lumps.

However: For the last couple of months I’ve been having what I can really only describe as upper quadrant aches and pains. Spots on my back, my upper arm, armpit, occasionally in my left breast. The breast ones do tend to get worse around periods, but all of it is generally there, on and off, all the time. And sometimes heartburn, when I don’t usually have it. Otherwise, all is the same as usual. I figured it was either my mattress, which needs to get replaced, or it was stress. I am coming off of two horrible years which included plenty of death of loved ones, unemployment, discovery of a chronic medical condition, and emergency surgery for a totally unrelated one. The symptoms started up around the time that my life began to improve, and I wondered if it was a weird form of PTSD. And I spent a LOT of time this summer quietly worst-case-scenarioing.

I got back on health insurance finally, I scheduled this overdue routine mammogram, and now here I am. My plan had been to get the ‘all clear’ letter from the mammogram, and then immediately pick up the phone to find a psychiatrist to deal with the unfounded anxiety. (I’ve been treated for depression in the past) Except now, well...

I guess my questions are: How afraid should I actually be? (I have read through some of the other breast cancer scare posts, and it's helped a little.) How do I get through the next few days? Bonus round: I have a spouse, but not a lot of local friends. And a preteen kid who saw all of the awful time, and doesn't need to see more.

Thanks so much for any advice you can offer.
posted by anonymous to Health & Fitness (16 answers total)
My sweety ended up getting all the way through the biopsy stage before being told "whoops, our bad". And, damn, those hours in the hospital the day of the biopsy were super stressful and sucked. But in the end she walked out a little sore with an "all clear" and a story to tell.

So there's one anecdote of an "it turned out to be nothing".
posted by straw at 8:45 AM on September 21, 2012

I've been there. When I got my baseline mammogram done--the first one I'd ever had, I am not sure if this is what you are referring to or now--there was a bunch of "Huh, we'd like you to come back for an ultrasound" talk and then I came back for an ultrasound and things were fine. And the entire time, waiting, I felt like I was going to die from waiting and not knowing. I am so sorry you are feeling this way, it sounds like it's been a tough few years.

This does not necessarily mean "Oh don't worry about it" but that worry won't actually help anything, there's nothing you could be doing differently at this point in your life to make your health outcomes different. Good on you for going and getting a mammogram. Are you left-handed? My personal "I feel weird in my breast area" problem had to do with a strained pectoral muscle from over-mousing and was dealt with decently with some exercise and ergonomic adjustments.

I would not put off finding a psychiatrist, I'd actually put that on your "to do" list along with getting some exercise [just a long walk can do wonders for anxiety] and really spending sometime just making the time pass without dwelling on this one thing. Have a talk with your spouse about your nervousness (maybe a daily one) and then try to move on to some other topics.

Most callbacks do not result in a cancer diagnosis. Other than that, I'd try (I know it's hard) to do the wait and see approach and not keep reading about this or that cancer outcome. It's good that you are taking care of yourself, I'd make a call to a therapist one of the next thigns you do, treatments for anxiety are often very effective.
posted by jessamyn at 8:47 AM on September 21, 2012 [2 favorites]

It's so hard to be less scared about this, but the odds are very very much in favor of hormonal fibrocystic issues that are totally benign.

The upper quadrant area and pain that increases around your period are generally good things that suggest hormonal changes and fibrocystic junk. Even if you don't feel a true lump, there can be thickening other changes associated with your hormones. This is even more likely given your age: prime cysty time, not prime cancer time.

If you want to know more about diagnostic mammos, ultrasounds, needle biopsies, and all that (totally painless!) stuff, please feel free to MeMail. I was in a similar boat all too recently and all was fine, as it is for the vast majority with breast callbacks.
posted by dayintoday at 8:55 AM on September 21, 2012 [1 favorite]

Lots and lots of people have to go back for that second trip. In most cases it really does turns out to be all clear.
posted by St. Alia of the Bunnies at 9:14 AM on September 21, 2012

Okay. Deep breath. I've been through/am still going through this. Can be a long, anxious road, start pacing yourself. You can do this. There is every chance that you're fine, but they are being careful. They don't want to miss anything and they don't want to go in scalpels blazing. And thank god for both.

They have found an area that seems possibly anomalous. They cannot tell for sure on the basis of the single mammogram, so they want to take another, focused look as well as implement another tool. This might lead to the conclusion that you're clear (most likely). But if they still can't get a good look, it might need to be repeated. And repeated. And then maybe none of these looksees will deliver enough conclusive information, and they might schedule an MRI. Or two. Or three. With and without contrasting fluid. At every step, you will be informed and consulted - you must insist that you are if it is not automatic.

And to help with this: even if your friends aren't close, just about every woman I know has been company or advocate for another sooner or later. It can really help to have someone go with you to help keep you calm, remember to ask questions, remember the answers and tell you off-color jokes. Ask them. Really.

Also available for memail questions - don't hesitate! (I'm not positively, definitively, absolutely all clear, but I am fine and being monitored. I say this to reassure you that the road can be long and also twisty, but you can walk it.)
posted by likeso at 9:46 AM on September 21, 2012 [1 favorite]

I had mammograms, ultrasounds, needle biopsies, core biopsies and finally surgical excision and then a two-week wait for pathology before being told a lump was benign. They can't always tell. My breast began to hurt with a stabbing pain just after my boyfriend died suddenly. I'm sure the stress of that time had something to do with it, although the doctors said not.

I also used to get breast pain because I was wearing the wrong-sized bra. Getting properly fitted (I went down 4" on the band size and up 3 cup sizes) made a huge difference to the general booby aches and pains I used to get.
posted by essexjan at 9:49 AM on September 21, 2012

The same thing has happened to me, and 4 of 5 good friends who went in for their first mammograms: come back, there's something we want to get a better look at. In my case, it required additional "regular" mammogram pictures (targeted to the specific area), and followup sonogram. They had me come back every 6 months for 2 years to verify there weren't any changes--indicating that it's just part of my "normal" tissue, and now a clear baseline for subsequent mammograms. My friends all had similar experiences.

The radiology center I go to to have it done is very agressive with followup, going so far as to send registered letters about reminder appointments--very annoying to have to go to the post office to collect a registered letter for that! Since these places make money per procedure, they have an incentive beyond just looking out for your well-being to get you in.

Sounds to me like the aches and pains you're experiencing could easily be related to one or more of the other things you mention (need new mattress, stress, chronic medical condition).

Of course, there's no way to know until you have your followup, but just know there's lots of anecdotal evidence for this sort of thing to turn out just fine.

Take care!
posted by msbubbaclees at 9:50 AM on September 21, 2012

IANAD, but I am the queen of the mammogram/ultrasound/biopsy callback (see my recent post). I've been through what you're going through several times. I have two suggestions:

-Can you call back and talk to someone to find out exactly what the concern is? My experience is that breast people tend to be overcautious, but they will readily tell you "Oh, I'm sure it's a cyst but we just want to get some better views to monitor it next time."

-Try to use some behavioral therapy techniques to calm yourself in the meantime. My train of thought would be something like this:

Event: Got callback for mammogram
Reaction: Oh my god, what if it's cancer?!!!
Emotion: Fear. Anxiety. Resignation to my fate.
A more rational reaction/emotion: My risk factors for breast cancer are fairly slim, so it's mostly likely not serious. If it is serious, we couldn't have caught it any earlier than we did. And I have insurance now so that's not a worry. There's nothing I can do to get my result sooner. I'll make an extra effort to concentrate on my everyday tasks and responsibilities to keep the worry at bay.

Hope this helps!
posted by auntie maim at 9:55 AM on September 21, 2012 [2 favorites]

I'm actually waiting for a diagnostic mammo/sono next week too! I would suggest 2 things:

1) call your primary care doctor, who will be able to go through the mammo report in more detail with you. In my case I had access to the report, which said things like "suboptimal positioning" and "no sign of calcifications" and in general made it pretty clear that the radiologist thought that the abnormality was likely to be due to the way my breast was positioned in the machine, although all the nurse who called me could tell me was that I needed a follow-up. If I hadn't read it, I would be FREAKING OUT, because I have a very extensive family history of early breast cancer. But because I did, I am a little nervous but pretty much OK.

Call your doctor's office and leave a message to ask if you could get a call back to go over the mammo results more thoroughly. This is an absolutely routine thing to do and if your doctor isn't happy to do it, you need a different doctor.

2) Go ahead and call a therapist if you think you'd like to see one. Anxiety doesn't have to be due to imaginary conditions to cause problems in your life. Plenty of people benefit from professional help to deal with anxiety and depression that are exacerbated by life circumstances.
posted by The Elusive Architeuthis at 10:00 AM on September 21, 2012


tl;dr: recalls are really common and routine, it's hard not to be anxious but odds are you are fine.
posted by zadcat at 10:02 AM on September 21, 2012

I had a scare early this year -- went in for a mammo because I'd noticed visible dimpling on the underside of one breast, and they sent me for an ultrasound after. Super scary couple of weeks. But what made it worse was that I didn't tell a soul about it. I think telling some people and getting some extra hugs during the wait would have helped to make it much, much easier.

In my case, the dimples wound up being akin to boob-cellulite because I'd lost weight. So here's another "Yeah got a callback and it was totally fine" for your tally.

And also, you know, virtual hugs. It's OK and human to be scared, but odds are still very, very good that you'll be completely fine.
posted by Andrhia at 10:10 AM on September 21, 2012

It's a frustrating, imperfect answer, but the truth is that there's no way for you to discern from the information you have the likelihood that something is really wrong.

When I went through a needle biopsy, I remember spending a TREMENDOUS amount of the time spent waiting for the results parsing every single word, pause, tone that the radiologist used, trying to figure out whether she secretly thought I had cancer and wasn't telling me, or she secretly thought I was fine and wasn't telling me. ("The fact that nothing shows up on the ultrasound is ... a good thing, I think." I remember this better than things I studied in school.) And while I turned out to be fine, I think the truth was that she simply hadn't drawn much of a conclusion beyond "we should do a biopsy to find out more," which statistically doesn't make it likely that you have cancer, but statistics are only what they are, right? There was nothing to know until they did the biopsy. There wasn't an answer, as far as them knowing something, to find. The information I needed literally didn't exist yet anywhere that I could access it. I had Schrodinger's boob.

I think it might be more productive, instead of "how scared should I be?" (which is EXACTLY EXACTLY how I always phrase my feelings in situations like this, so I feel you), to ask, "How scared is it productive for me to be?" There are situations where it's productive to be scared: You're nervous about something enough to investigate, to have it checked, to see what's up, to be careful. Your fear is productive. But if you're in a situation where you're already on track to check as much as you possibly can check, in a sense you've earned the right to let go of it until you find out what's next.

Courage! You will most likely be fine, and if there's something that needs handling, you'll handle it the best you can.
posted by Linda_Holmes at 10:49 AM on September 21, 2012 [1 favorite]

One more story for you: My mom must have the crappiest breasts in history (sorry, Mom). She has had mammograms, repeat mammograms, ultrasounds, multiple needle biopsies, and lumpectomies all over the last 20 years or so and NONE of those have come back cancerous. Sometimes boobies are just dense and cystic and hard to figure out what's going on. So, as everyone has said, the callback in itself is really not that worrisome (although I totally understand you being worried).
posted by SweetTeaAndABiscuit at 11:20 AM on September 21, 2012

I had a benign breast tumor removed more than 15 years ago.

I was in my mid 20s, otherwise healthy. The lump had been there for awhile and they told me it was a cyst (at my age anything else was unlikely), but then we moved and I changed doctors, and the new doc said "hm, I don't think so." I ended up having a straight up lumpectomy with simple local anesthetic in one of the surgeon's exam rooms. My mom came, held my ankles during the procedure, and chatted with the doc, which helped ground me and kept me from feeling like I had to be polite and talk.

The week or so between the ultrasound and the lumpectomy was long. I didn't tell more than two or three very close people, and I did wonder what I would do if it was something that would require further treatment. My surgeon had given me a brochure about benign tumors and assured me that's what it most likely was, but I still worried. I think I finally decided that if it was a problem, we'd figure it out when we knew for sure. That I'd done my best and was getting medical treatment. I worked, walked the dog, made dinner, read.

The tumor was indeed benign. My scar finally faded away, and my baseline mammograms have been clear.
posted by hms71 at 7:41 PM on September 21, 2012

Yeah, I had lumpy breasts at 38 and basically had 4 mammograms and multiple ultrasounds in one year. Turns out I had an irregular, misshapen black spot coming up really close to the inside of my armpit on the left - but it was in a weird place, so they couldn't do a biopsy. It was either full surgery or monitor it.

(I have had some pain in the past in my breast, and have felt lumps for several years. Nothing ever came of them; they fluctuate hormonally and with caffeine intake, so maybe cut out all caffeine? if you have fibrocystic breast tissue, caffeine can aggravate the symptoms you describe.)

My dark mass never grew or changed shape, so the doctor - who had gone through breast cancer herself and a double mastectomy - said it wasn't worth it to open me up. But sitting through all those scans was emotionally draining.

I really don't know what can make you feel better other than sleeping as much as possible, maybe getting lost in a good book if you can focus on it, and healthy, nutritious food (lack of sleep and poor nutrition exacerbate stress/your immune system). The more you take care of your physical needs, the better your mental state will be for coping, especially since you mention having a chronic illness.

Journaling offline where you can't be tempted to google symptoms and risks and whatnot might help ease your mind, too.

Best of luck, and hope you get a clear answer on your next visit!
posted by Unicorn on the cob at 10:54 PM on September 21, 2012

From the OP:
Followup: I just got back from the hospital, where they took a few more images and said "No ultrasound necessary, see you next year." Apparently I just folded oddly (the girls are pretty big, so it's plausible).

I just want to say: Thank you SO SO SO much, each and every one of you, for taking the time to respond to this AskMe. I must have read this page a hundred times in the last five days. I had the page permanently open in my cellphone browser. Now that I'm clear for a year, yes, it's time to take some additional steps. And I will. I promise.

Hugs and good wishes back to all of you.
posted by jessamyn at 9:44 AM on September 25, 2012 [3 favorites]

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