Follow Up

follow up

Last March a week or so after my mastectomy, I had an appointment with my oncologist.  While I’d already heard from the surgeon’s office that I’d had a complete pathological response, this appointment had been set up to completely discuss my pathology and any next steps.  Because of the good pathology news, the “next steps” part was very short.  Come back every six months for a quick physical exam and a chat with her.  And that is all.

I love my oncologist, and I respect her on top of that.  But I questioned this advice.  Nothing? No scans, no blood tests, nothing?  Knowing my research background, she reassured me what I suppose I already knew deep down.  I don’t have any breast tissue left to mammogram.  There are no biomarkers associated with breast cancer that can be measured from a blood test.  And even PET/CT scans aren’t indicated in an asymptomatic patient.  She told me that the Journal of Clinical Oncology had recently published a study on this very topic.  So we discussed that I’d be back in six months, and the situations under which I should call her earlier, and I hugged her and left.  I was a little surprised to see an email from her in my inbox later that afternoon, with this article.  She’d found the article published that very month, and sent it to me to reassure me just a little bit more.  And when I admitted to being a bit of a nerd, but told her I appreciated her taking the time to send it to me, she replied simply.  “nerds are cool :)”

More Questions | Mammograms

show-2
source

First a disclaimer: I’m not a medical doctor. This blog is full of personal anecdotes and sometimes a scientific perspective.  So, there’s that.

The American Cancer Society encourages women to start annual mammograms at age 40. (A newly-Canadian friend asked about this, and I believe their recommendations are a bit different.)  Because of that recommendation, insurance companies are required to cover this level of screening. Doing a little research for this post, though, I found that in 2009, the US Preventative Services Task Force actually changed that recommendation to start biennial (every two years) mammograms at age 50, but I’m guessing that because of previous legislation, insurance companies still cover yearly mammograms after 40, and so doctors still suggest it.  (Not only am I not a medical doctor, I’m not a politician, so if I’m wrong, please forgive me.) If a woman is at particularly high risk, earlier screening may be warranted.  In general if your parent were diagnosed with a  (screen-able) cancer at a young age, you should start screening when you are ten years younger than your parent was at diagnosis.  So that means based on current standards, my beautiful little girl will need to start some breast cancer screening when she’s only 25.  That really breaks my heart.

Even for women with reasonably normal risk, though, mammography is not without controversy.  There is a growing voice speaking out against screening mammography, citing data indicating while it has increased the instance of diagnosed breast cancers, it has not drastically decreased the number of breast tumors presenting at a late stage, nor has it made a significant decrease in overall mortality.  (Edited to add: a new study refutes this, indicating that mammograms really are catching tumors earlier.  Read my update to the great mammogram debate here.)  And they suggest that the number of unnecessary biopsies is not acceptable.  Now, I’ve had a diagnostic mammogram, which is like a screening mammogram on steroids.  Yes, it hurt.  But for a few seconds a few different times.  And I’ve had a few biopsies.  One of them was particularly bad– I bled a lot.  My chest was wrapped so tightly when I left that I couldn’t fully inflate my lungs, and the surgeon called me first thing the next morning because she was so worried that I might start bleeding and require emergency surgery. That was a bad biopsy. Still, I’d rather have a bad biopsy and find out that I didn’t have cancer than let cancer go undiagnosed for years.  That’s all emotional, of course.  I’m so glad I’m not the one who has to really examine the data and look at cost benefit analysis to make official recommendations and decide on insurance coverage.  But my semi-emotional, semi-rational response?  Get your mammogram for as long as your insurance covers it.

On the other side of the issue, there are people who wonder why mammograms are only covered for women over 40.  I mean, I got cancer before I was 40.  Breast cancer is still predominantly a disease of older women, and yet that doesn’t mean that young women go unaffected.  But part of the reason that younger women don’t get mammograms has to do with their biology.  Younger women have denser breasts– more breast tissue and less fatty tissue– and mammograms can’t visualize a dense breast nearly as well as a fattier breast.  So a screening test that’s not as effective in a population that’s at a much lower risk? Not recommended.  For young women at particularly high risk, those with a mutated BRCA gene, for example, an MRI can often be more informative and so is more likely to be covered by insurance.

I don’t think any woman can say the word, “mammogram,” without cringing just a little.  But one very important thing I’ve learned in the last year is that it’s SO much better to find a tumor sooner than later.

You Asked: Lymphedema and Cording

So I’m taking a small liberty here, no one asked about cording, but it feels like it’s worth mentioning along with my comments on lymphedema.  To determine the spread of breast cancer, breast surgeons remove one or more lymph nodes.  They act as filters, so they are likely the first place cancer cells would be trapped if they’d escaped the breast.  Unfortunately, taking them out to check for cancer, while important, can cause not so great side effects.  Lymphedema– the swelling of fingers and arms in breast cancer– occurs when the remaining lymph nodes can’t keep up and fluid builds up.  That’s why some women wear a compression sleeve after a mastectomy. Because some of the lymph nodes are removed, the lymphatic vessels that service those nodes can harden from disuse and cause problems as well. (They look like tendons that appeared out of nowhere, frequently under the arm and down the arm to the wrist, but can also run from under the arm and down through the chest.)

Before I had my mastectomy, I had an hour or so consult with a physical therapist.  (As an aside, I would insist on having this kind of appointment a week or so before surgery– invaluable.) Michelle is a lymphedema specialist, and she made sure I understand exactly what I should and should not do after surgery.  More than that, she made sure I knew what to expect and what would signal a problem with lymphedema.  She emphasized that it would be far easier to deal with lymphedema early, before it became a significant issue.  Though I have yet to meet her, I also have several friends who see a massage therapist at the Teal Center at the hospital who focuses her massage on the axilla (that’s a fancy word for armpit– I’m flashing back to Fancy Nancy!) to help encourage lymph drainage.

Thankfully, I only had a few small, superficial nodes removed at surgery, so I am not likely to struggle with lymphedema. I did experience some minor cording, and Michelle used massage and stretching to break the cord, which you could hear pop as she broke them down.  Creepy.  On the advice of a friend, I scheduled my appointments with her just before I went for an expansion with the plastic surgeon, and I think the relaxing of that area really helped lessen the pain of the expansion.

Lymphedema and cording are real issues, though as current standard practice does not dictate that a surgeon remove all  nodes, they are not as prevalent now as they once were.  Still, the take home message is that there are physical therapists who are specifically trained to combat these problems.  Michelle did a great job, and she was really nice, too.  A little PT would be so much better than dealing with swelling and the pain from cording.

On Finding a Lump

So despite my mini-rant on the pinkwashing of all kinds of stuff to sell in October, I’m all for breast cancer awareness.  But I’m thinking if you’re reading this, you’re plenty aware.  And surely you know that a woman over 40 needs a yearly mammogram.  If your doctor finds something suspicious on a mammogram, then it’s pretty easy to know what to do.  Whatever the doctor tells you.  But if you’re like me, under 40 and not yet a candidate for a mammogram, or if you’re in between mammograms and find a lump, it’s a little harder to know how to proceed.

The first time I found a lump, it was under my arm, probably twelve years ago.  I did what I would guess most women do.  I worried, let my imagination go off the deep end, and hoped that it would just go away.  After obsessing for several weeks, I made an appointment with my primary doc.  Because I figured that was the thing to do.  The lump was obvious, and being under my arm, I was sure I had breast cancer which had spread to my lymph nodes– stage 3 at the best. My doctor, on the other hand, was sure I was recovering from some sort of an infection, and that if I took some Advil, the inflamed lymph node would return to normal in four to six weeks.  After a couple of weeks, I’d had no resolution, and so I made an appointment with my OB/GYN. She, too, was sure that it was nothing, but if the Advil didn’t take care of it in another four to six weeks, she gave me the name of a breast surgeon to contact at that point. As soon as I left her office, I called the surgeon. No sense waiting any longer. A couple of weeks later, at the first available appointment, I met with the surgeon.  He, too, assured me that it was probably nothing, but wanted to be sure and sent me for an ultrasound.  An hour or so later, I was returning to the surgeon’s office with a little black and white print out– an ultrasound pic of a glob of fat in your armpit isn’t nearly as adorable as one of a teeny little baby, by the way. Turns out, they were all right, it was nothing and I was fine, but it took a trip to a breast surgeon to know for sure.

Strangely, I’m so thankful for that experience. Last year, on that Saturday, when I first felt that lump in my left breast, I knew immediately what I needed to do.  The surgeon who I’d appreciated all those years ago is no longer in the area, so I made a short list of surgeons to call Monday morning.  I was fortunate to secure an appointment for the very next day, and she did an ultrasound and aspirated the cyst right in the office.  I was out and on my way within a half hour.  And within the week, I had a diagnosis.  Waiting a few weeks and jumping through a few hoops probably wouldn’t have made a difference in my long term outcome.  But because of some previous procedures, I had an appointment with my OB/GYN and a general surgeon who sometimes does breast surgeries in the following weeks, and they both indicated that they don’t always even aspirate cysts, and they certainly don’t send the fluid to pathology. I definitely made the right call. A breast surgeon is a specialist for a reason, and I can’t think of a better first call after finding a lump.

This Little Stool

this little stool

My brother had a little stool like this one, complete with the adorable little rhyme.  When Emma Clare was little, I didn’t have a stool in the kitchen for her, so she frequently turned her toy microwave on its end to stand on.  My friend, Natalie, was over one day and noticed it, remarking, “That stool looks just like a little microwave.”  Um. Yes, it is a toy microwave. Not the most study of all stools…  A week or two later, she showed up at my house with a lovely wooden stool hand made by her father.  I was skeptical, but she said that because of the way it was made, it was impossible to tip over.  But I give her (and her dad!) credit, with two of the most monkey-like kiddos, in the past probably seven or eight years, it never has turned over!

It is stained the same color as the furniture in our living room and tucks nicely under some nesting tables at the end of the couch, so it’s gone back and forth from the kitchen to the living room for years.  But lately, it’s been living permanently in the kitchen.

After hearing one of those “It’s never happened to one of my patients, knock on wood…” horror stories from my plastic surgeon, I’m being super careful about not reaching my elbows above my shoulders.  The problem is, reaching doesn’t hurt at all, which makes it hard to remember to be good.  Having that little stool to pull around the kitchen with my foot makes it so much easier to have some independence in the kitchen without breaking any rules. I always thought that stool was a thoughtful gift.  But now that it gives me some much needed independence, I really love it.  Thanks, Natalie!

Making Progress

champion sports bra

Today’s a big day.  My last day in the compression bra.  I’ve been thinking a lot about my compression bra ordeal lately– the ones they sent home from the hospital were so bad, I’m going to talk to my surgeon about some better options.  Not that I’ll ever have to wear one again (and I am SO glad!), but there has to be a better option.  And even the one from Nordstrom that I’ve been washing each night after dinner so that I can wear it again the next morning has some issues.  To really be truly compressive enough, it can’t have any shape, and this one has just a little bit of shape built in, so the only reason it works for me is that it’s a size or two smaller than I currently measure.

Regardless, I’ll be moving to something more like the picture above in a few hours.  I was going in search of my favorite sports bra, and am devastated that it is no longer on the Champion website.  (It’s a good thing I started hoarding them a couple of years ago!) It’s a high support sports bra, which is good for my current needs.  But they key is that it’s more of an old-school sports bra– completely flat.  No fancy ruching, no molded cups, no underwire. To get good post-surgery compression (and the OK from my surgeon), it has to be completely flat. It’s hard to be sure online, but this one looks like a good alternative to my favorite (now discontinued) sports bra.  But probably the best thing about moving to this stage of recovery? Only two more weeks until I can go back to wearing whatever I want!

Lesson learned.

stupidAfter completing all my treatment and the pathology from my surgery came back “all clear,” a friend told me that I should ask about seeing Maureen, a nurse in our practice, for my survivorship appointment. My friend loved the binder she gave her with all her cancer details.  Diagnostic reports, treatment drugs and dosages, pathology reports, all in one neat, tidy place.  I feel like this is such a valuable resource as so many women are living so much longer after their breast cancer diagnosis.  At some point, I’m sure I’ll stop calling the oncologist for every little thing, afraid that it has to do with the cancer (not that I’ve made any of these calls, but most of my friends have at least once).  And at that point, I’ll need that binder o’ details for my primary doc.  Anyway, everything wrapped up for me in mid March.  I asked my doctor about the survivorship appointment, and after a couple of weeks, she apologized for making me wait, that there was some transition in the survivorship program or something like that.  She put me in touch with the scheduling office and we got something scheduled before school let out.  To make a long story short, the appointment has been cancelled and rescheduled several times since then, and I finally had it set up for this week. (And I should also say that this is the only time I’ve had anything not-glowing to say about my oncology practice.  They’re great.)

Last week, I got a call from the scheduling office, and knew what she was going to say.  They needed to reschedule my survivorship appointment.

Me (in a sincerely nice tone):  Hi, Brittany. (yes, she is a grown up named Brittany) I’m really trying to be kind. But I’ve been trying to schedule this appointment since April. And it keeps getting rescheduled.  And it’s usually about four or five business days before the appointment.  I understand that I’m not sick, and I don’t want to take away Maureen’s time from someone who is sick and needs to be seen.  But it really seems like maybe her schedule isn’t full and so it’s just cleared and she doesn’t come in. And every time I have to reschedule, it’s usually another six weeks before she has another opening. Can you help me understand what’s going on here?  My friend said this is a great appointment, and I’d really just like to get it taken care of. Can you help me with this, Brittany?

Brittany: Maureen is actually out of the country. We expected her back but she’s adopting two children and there are problems with the paperwork so she can’t get back into the country right now.

Me: ummm….

My appointment is now scheduled for October.  I’m going to go back to eating my humble pie, thank you very much.