What a Girl (with cancer) Wants

Posted: 14/02/2018 in Uncategorized

Yes, a visit from Colin Firth would be great! Good luck on arranging that, though.

So, yearly mammograms, which every woman should do at age 40 or as otherwise recommended by your doctor, are a real-life version of The Hunger Games. The statistics are everywhere. Roughly 80% of the ladies who go in for a screening come out with a clear report. Even of the 20% who go back for a diagnostic workup, which involves more, ahem, squishing, and possibly an ultrasound (painless), about 90% simply had an unclear image; nothing is wrong. Ah, but you’ve done the math. About 1.8% (which works out to be one in eight women over the course of a lifetime (and don’t hold me to statistics, which change over time) will not get happy news. They may need more tests, such as a core needle biopsy, or surgery, or radiation, or chemo, or some combination above. So yeah, you go in and don’t wish anyone’s name to be pulled out by Effie Trinkett–but you sure as heck don’t want it to be you, either.

Congratulations, I won the local district Hunger Games this year. That makes me Primrose Everdeen, I guess. (And to think all this time I thought I was Haymitch).

I had DCIS (ductal carcinoma in situ) 14 years ago. Back then, a general surgeon did the work, and you got booted to the curb without any further testing, such as a sample of your sentinel lymph nodes, genetic workups (they really didn’t exist), or even radiation. In fact, I was back at work on Monday after a Friday surgery. People are now horrified by this, but I remind them: Back then, DCIS wasn’t even “real” cancer. My GYN arranged for me to chat with an oncologist that same year–and he concurred. Watch carefully, at that time, was the recommended course of action, along with the “new” BRCA 1/2 tests (negative). Things were fine for the moment.

I am scrupulous about mammograms, given my own history and that of my family. I was just a couple weeks late (early January instead of mid-December). The screening test went fine, and I heard nothing else…until over a week later when my doctor’s office called to say I needed a diagnostic view and probably an ultrasound if recommended by the radiologist. I went in without too much worry to the rural yet seemingly competent facility near my office, where I’d been going for several years. And…I got a rude awakening.

My PCP had sent me my complete report–we talked about it and agreed that the diagnostic repeat and the ultrasound were good next steps. I am not a radiologist, but I do know a lot about my particular body parts. So, things like “architectural distortion” or “micro-calcifications” are cause for caution, not alarm, since I’d seen them before in 2004. Right away, the well-intentioned mammographer was bothered by the fact that I had (gasp) read the report. It made her uneasy. Nonetheless, I cooperated fully so we could get good images. She told me to have a seat, and she’d send the radiologist my films.

“You’re sending them to a radiologist?” I asked.

“Yes–there’s no radiologist on site, so we have to email everything and wait,” she replied.

Wait I did. And wait. And wait. She kept the door shut so I couldn’t hear her calling and asking if the films had been read every 15 minutes (but moms have excellent hearing–it develops in the final trimester, I think). She was nervous as a flea. Finally, she opened the door and said I could get the ultrasound (US). Off I go to get that done. And of course those images are sent off, and I wait. ANOTHER HOUR. I’m packing up to go because this is getting crazy. The US tech comes to tell me that I can leave now. But that’s it.

“Do we have a BIRADS score yet?” I asked. The poor young thing looked at me as if I had two heads. I shifted gears because apparently I scared the hell out of her. “Okay, so, is there anything I need to know from the radiologist? Does he or she need to speak with me?” Answer: “Well, they don’t talk to patients. You’ll have to talk to your doctor. But he did say he was 95% sure this was nothing to worry about. You may need an MRI–you and your doctor can talk about it.” Thus, after four hours, I knew spit. I thought about tossing the Mammography Quality Standards Act of 1992 at her (along with subsequent research that says real-time communication between patient and radiologist is the gold standard with a suspected abnormality), but I was worn out and backed off. It wasn’t her fault. Within 48 hours, though, my PCP’s office called me back, apologizing she’d not been quicker–influenza had them all sick and still carrying a heavy patient load. No problem–I understood.

“I’m not quite sure this radiology report is, errr, as complete as I’d like,” she said. “For the ultrasound, there were no notes other than the fact they did an ultrasound. Also, there are no facilities here to do an MRI. I think additional imaging may be valuable. Is that okay with you?” Heck yes. I’ve been in academia long enough to read between the lines to know she meant, “Uh, Dr. Snape, the general radiologist, didn’t really do a great job reading your reports. You need someone who specializes in breast care.” But like I can’t say unprofessional things about my colleagues who take three hour lunches and 10 weeks to grade papers, she couldn’t exactly slag the lack of quality at the local facility. And so I pulled out the information in my phone I’d stored for the nurse navigator at the teaching hospital/major cancer center an hour away. She was marvelous and responded in five minutes. I was astonished. She set everything up right away, though she also had to “fight” to get my records.

Cutting to the chase, I went in the next week for more mammograms, another ultrasound, a core needle biopsy (it’s not fun, but honestly, it’s not the worst, either–ask for lots of lidocaine), and a marker placement. They found something, but couldn’t be sure what until the pathology came back. I went in four days after that (pretty fast timing, considering the weekend) to get the exact diagnosis: invasive ductal carcinoma (IDC, stage 1) with ductal carcinoma in situ (DCIS, intermediate grade, already solidified). The tumor is small (around 7 x 9 mm). They will sample the sentinel lymph nodes during surgery, and that same day of diagnosis, I got a genetic test for 28 markers which should be back in about 3 weeks. (I admit, I am dreading the “radiation injections” the day before the lumpectomy, sigh, which will show the surgeon, a breast specialist, which lymph nodes to excise). I was offered the choice of waiting until after the genetics came back or not–and I chose to go ahead with a lumpectomy and radiation, knowing that a final pathology and genetic report could tweak the outcome (possibly more surgery or perhaps chemotherapy, though good chances of not). It was caught early. Chances of survival and recovery are excellent, though I’ll be monitored carefully for recurrence since this is round 2 (completely different cancers, though, and on different sides. Wacky fun).

This all leads me to the title….what do you want if you are diagnosed with cancer? This sample size of one has the following suggestions for what I wanted/want/will want:

  1. You don’t want to drive 90 minutes to the specialty breast care clinic for your mammogram. It’s gas money, time off work, arranging child care, etc. I get it. I really do. So, it is okay to go to your local facility for your annual screening. ANY screening is better than no screening. But if you have a history or symptoms or anything feels “off”: Go to the specialty clinic. Go to where a radiologist reads nothing but breast imaging. Go there right away. Turns out the radiologist who read my initial films is not a breast specialist, but a generalist. He was reading CT scans of kidney stones and bone x-rays while, pun intended, squeezing my breasts into his busy schedule. This was a small IDC (though the DCIS was quite clear)–it needed an expert. There are a number of accreditations for mammography centers, so make sure yours has at least some oversight.
  2. Don’t let anyone tell you that you cannot have a copy of your records. HIPAA laws state that you can. You may be required to pay a small fee for processing or wait up to 30 days. But they are your records. If someone balks, ask for a patient advocate or ombudsman. Get the files and keep them in a binder. Take them with you to appointments. Ask questions. This is your body and your time and money. Be courteous and not a know-it-all, but ask if you do not understand what you are being told.
  3. Take a driver if you are having a core needle biopsy. There are no drugs involved that impair judgment, but you will be tired and sore after–and a long drive home is not fun. Also, take your partner or BFF to the diagnosis appointment following the biopsy. I almost didn’t, but I’m glad I did. He took notes while I stared at the doctor trying to maintain equilibrium.
  4. If you get a cancer diagnosis and face surgery, one of the nurses told me a good general rule: Take off one day from work for every hour the surgery will take. Example: Mine will be about a 3-hour procedure. She suggested taking off three days minimum to clear the anesthesia from my system, get the plumbing working, resting, and treating the pain. You may need more time if you do lifting or lots of manual labor. Obviously, depending on your surgery, you may need to take off much more time.
  5. People are going to react in one of two general ways: Sympathetic, but running away or not wanting to talk about it (don’t hold it against them; cancer is scary) OR Sympathetic and wanting to do something (even if all you want to do is sleeeeeeeep and not entertain–and really, folks, it IS about you. If you don’t want people around, say so. If you do, don’t be shy about retiring when you get tired). Give them something to do, if they ask: a) Leave a basket of laundry to be washed, dried, and folded/hung up, then returned; b) ask for a frozen casserole; c) ask for them to pick up your car, gas it, and clean it up before returning it–and maybe swing by the bank or post office, too; d) request unscented lotions, lip balms, socks (I got some awesome ones!), a fuzzy blanket, and/or cough drops–you are going to be cold (ice packs on those sensitive areas) and parched, with a dry, dry throat; e) request a couple of beverage tumblers so you can always have a cold drink at hand 24/7–I cannot begin to describe the overwhelming thirst; f) a gift card for books or music or whatever is helpful; g) assisting with child care is amazing (even if the ‘child’ is graduating high school, so this could be a meal or a gift card for them); h) bring over some movies or books or magazines, and i) offering transportation help.

And helpful people, please please do not be hurt or upset if the patient says thank you so much, but I’m good right now. It is not a personal affront; it just means they are coping with a lot and have a foggy brain. Asking them to make decisions or answer long questions on the spot is like asking a toddler.

What have been the hardest parts thus far? You’re thinking cancer, right? WRONG. For me, it’s been who to tell, how to tell them, and dealing with work (when I drive south an hour for my job and north an hour for cancer stuff–and routinely put in 50-60 hour weeks teaching, pulling data, writing reports, holding workshops, and even resetting passwords and dealing with a lot of complaints because yes, you do have to give your students some grades, and no, I cannot give you a pile of money for serving on a committee that is going to require about 7 hours of time, total, this semester. Sorry).

John Green had it right. When you tell the people you must tell, because they are your besties or your family, you don’t cry. You bite your cheek, pinch yourself, or stomp your feet to do anything but cry. Keep it simple and straightforward. For my son, the pre-med major, I made it clinical, discussing genetics and aromatase inhibitors. For the friends, it was here’s what’s going on, here’s what I need, and it’s all going to be fine (we hope). For work, where any given day I don’t get a bathroom break until 2 PM, and hahaha, forget lunch anywhere but my desk, I told my dual supervisors and kept it on point. I filed the proper papers for time off and gave them a heads up about how we might have to discuss some work from home or on our satellite campus near the hospital during radiation. For other colleagues I chose to tell, I made it matter of fact. I asked a few to help cover job-related tasks or meetings I couldn’t attend. And after 2 weeks, I think I am done with the telling and asking and talking part of this. It’s absolutely exhausting. I can honestly say I’m ready for the surgery just to have a reason not to answer the texts, emails, calls, or whatever. (Though still not excited about the pre-op radiation shots….ouch again, I say).

In closing, let me give one final cautionary tale. Beware the well-intentioned who do things like tell you icky stories of Great-Uncle Dave’s horrific, painful lung cancer, or how seaweed oil cured Grandma’s melanoma–and you need a bottle of that stuff rather than your prescriptions, or beat their chests in misery because life is so unfair (yeah, got it). They will also sometimes burst into fulsome tears and make your illness all about them. Back away slowly. Thank them for their concern–and get out. If you must, tell them that your doctor has a solid treatment plan or how every cancer is quite different. But you don’t need this dragging you down. Really.

I hope this has been helpful or at least interesting. Do you have questions or are you wondering what resources are out there? Feel free to drop me a line–I’m not a medical doctor, but I’ve accumulated a nice collection of reliable online sites. This is Andromache, wishing you the best if you or a loved one is also going through this mess.

 

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