Friday, September 25, 2015

Getting Back

This past week brought some much needed glimpses of my normal self. First was my return to exercise. Being an avid exerciser, it's been hard for me to miss my morning runs, workout classes, and yoga. I've been very compliant with the doctors' suggestions to take it easy, and I know my body has needed to recover, but I've definitely noticed a decline in my fitness. It's not just not being able to exercise, it's the impact the surgery--especially the reconstruction--has had on my upper body. Recall that the tissue expanders are placed under the muscle. As a result, the muscles in my chest and down my upper arm have all been impacted. It's just in the last couple of weeks that I'm able to lift my arms straight above my head, and even then, I can feel the stretch. Also, thanks to all the delicious meals and my lack of movement, I've gained about 8-10 pounds, seems to be mostly in my belly. Thank goodness for yoga pants. Sure would be nice to feel comfortable in my work pants.

Anyway, this week, I once again started getting up before the sun, and instead of running, been doing brisk walking. It's been a better workout than I expected. And I love that time before the day sets in to be outside, chat with my running/walking friends, watch the sun rise, and move my body. I'm very anxious to kick it up, but for now, I'm very happy to have this little piece of my normal life back.

The other glimpse of normalcy has been my return to work. I've actually been working from home--just about full-time--for the last couple of weeks. But this week, I started going into the office. Coincidentally, my boss has taken on a very large, high-profile assignment and asked me to help with the communications aspect. It's very interesting and exciting to be a part of it, but it's also quite intense as I get up to speed and hit the ground running. I've really enjoyed being with my team again, who are all so supportive and talented. So, going to the office has been good for me. It's also been good for my kids to see me doing all my "normal" things, but I think they're also happy that I'm not quite as busy and go-go-go as I usually am.

The only drawback is that I'm still in some discomfort. I think I'll feel much better when the tissue expanders are exchanged for silicone implants. The expanders make it feel like I have boulders under my skin, so there's no give against anything pressing against it. And the nerves in my skin are still damaged, so any fabric against my skin is very bothersome--cross between itching and burning sensation. So, by the end of the day, after being in discomfort all day, I'm pretty exhausted. OTC analgesics do not seem to help, but I am able to take stronger prescription painkillers before I go to bed. Sleep is a little hit-or-miss, but if I can get a good night's sleep, I wake up with good energy and am able to go about my day pretty normally.

So, all in all, things are going pretty well. I'm still waiting for the results of my Oncotype DX to determine the next steps of my treatment. As you can imagine, I'm anxious to get that plan mapped out and get started. Well, as soon as I hit, publish, I got an email from my oncologist. My Oncotype DX score is low, so NO CHEMO!! <happy girl wiggle dance> I'll start hormone therapy soon.

Thursday, September 17, 2015

Under (re)construction

My big news today is that I finally got my post-surgical drains removed! Those things were awful and a constant reminder that I am a patient. If you've never had the pleasure, basically, during surgery, the surgeon inserts tubes near the surgical site. These tubes connect to a plastic bulb. The bulb is squeezed tight and creates a vacuum to suck all the nasty blood and other fluids out of your body. The patient then has to empty their drains several times a day, measure and record the output. When the output reduces sufficiently, the doctor can remove them. They don't particularly hurt, but there is some tenderness at the insertion point, and they tend to get in the way and make sleeping on your side a challenge. Drains come with the territory regardless of reconstruction. Some tips for those who ever have to live with them.
  • First, I used my running belt to hold the drain bulbs. They fit snugly and securely and provided the most discreet option. 
  • Second, I pinned them to a strand of beads around my neck to take a shower. This was not particularly comfortable, but it helped to keep them from hanging.
Okay, so about the reconstruction. There are many different reconstruction techniques, and I'm learning that it's not one-size-fits-all (get it? ;) ).  There are implants and there are autologous techniques (using your own tissue from elsewhere in the body).

So, if you're wondering about my reconstruction process, I chose to get implants. It's not quite as simple as it sounds, and it barely resembles a breast augmentation. There are two ways to get post-mastectomy implants: the first is direct-to-implant procedure and the second is to have temporary tissue expanders followed by implants. That's what I got. I actually hoped to go directly to implants, but when the plastic surgeon was able to see what he was working with, he was concerned that my skin was too thin to successfully accommodate them. See, during the mastectomy, the breast surgeon has to remove ALL the breast tissue, taking it down to skin and fat and muscle. I'm a pretty thin person, so there wasn't a lot of fat to help the cause. So, he made the game-day decision to use the expanders. They are basically inflatable implants, which are placed under the chest muscle (yes, that's as painful as it sounds) and gradually expanded to size. I go every couple of weeks and he injects more saline into the expander. Once they are a little bigger the final implant size, I'll live with them for a couple of months. Then I will have another surgery when he will exchange the expanders for implants.

I was lucky that I was able to have a skin and nipple-sparing mastectomy, meaning that they left the nipple and as much of the skin as possible in-tact. This will avoid the need for nipple reconstruction (though some opt for no nipples, 3D tattoo nipples, or some very beautiful tattoos). Of course, many women choose not to have reconstruction, which I'm starting to understand more and more.

So, along with the drain removal, I had an expansion today. The expansions put a lot more pressure on my muscles so I'll feel more sore for the next few days. My other complaint is not about reconstruction, but just the mastectomy. As you can imagine, nerves had to be severed, so now as the nerves are trying to regenerate, I have pretty intense hypersensitivity on my chest. It's hard to find any fabric that does not exacerbate it. I must change my clothes at least three times a day, as something that feels comfortable will become unbearable within a few hours. It's also been very hard to sleep between the discomfort and the drains. I'm really hoping that along with the drain removal, I'll get a better night sleep tonight.


Tuesday, September 15, 2015

Frequently Wondered Questions

I've noticed that when I talk to people about my experience, they often say, "I wondered about that," but for some reason, they hesitate to ask. It's really okay to ask. I can't speak for anyone else, but I'd much rather be the source of factual information than have people make (often false) assumptions. Some of this is redundant to other posts, but so be it.

Did someone in your family have cancer?
Yes, my mother had breast cancer in her 30s and passed away when she was 40. I don't know a lot of details about her diagnosis, however.

Did you have genetic testing?
Yes, about two years ago, I had genetic counseling and testing done. I was negative for both the BRCA 1 and 2 mutations.

How did you find your cancer? Did you find the lump yourself or was it a mammogram?
Neither. I did not feel my own cancer, nor was it found on a mammogram. In fact, even after it was detected, there was still no trace of it seen on a 3D mammogram. Because I was considered high-risk, I was getting annual breast MRIs, which is what showed an abnormality.

Why shouldn't everyone get breast MRIs?
When it comes to screening technologies, guidelines are established looking at many factors. Two of which are specificity and sensitivity. MRIs are very sensitive, but not very specific. This means that they tend to pick up a lot of "noise." So, for women who are normal risk, that would translate into a lot of false positives, which would need follow-up testing. This is both costly and anxiety-inducing. Mammograms are not as sensitive, but they are more specific. Also, there are times when mammograms find cancers that are missed by MRIs.

Anyway, if you are at high risk and/or have dense breasts, it may be worth talking to your doctor about more aggressive screening, which could simply mean mammograms plus ultrasound or mammogram plus MRIs.

What stage is your cancer?
My tumor measured 2.0 cm and my sentinel node biopsy was clean. This means I'm stage I. If the tumor had been 2.1 cm or if my nodes had been involved, I'd be at a higher stage.

The type of cancer is infiltrating and in-situ lobular carcinoma. Lobular cancers make up about 10% of all breast cancer. Almost all others are ductal. Lobular cancers are typically slow-growing, but are often very hard to detect on mammogram (see above).

What kind of treatment are you getting?
Surgery:
I had a skin and nipple-sparing bilateral mastectomy (removal of both breasts, leaving as much skin and the nipples/areolas intact), sentinel node biopsy (removal of just 1 or a few lymph nodes for testing), and am in the process of getting reconstruction. I currently have tissue expanders (medieval torture devices) in place. These are gradually filled with saline every couple of weeks. Eventually, the expanders will be exchanged for silicone implants. If anyone tells you it's like a boob job, please do me a favor and just slap the shit of out him/her. More about that another time.

Chemo:
This is TBD, most likely not, but it will depend on the results of the Oncotype DX, which calculates the likelihood of recurrence and how beneficial chemo might be. I'll update this when I learn more.

Radiation:
I will not have radiation.

Hormone therapy:
Because my cancer is estrogen-receptor positive (it feeds off of estrogen), I will get monthly ovarian suppression injections. I may eventually have my ovaries removed. I will also take a daily aromatase inhibitor. The data indicates that hormone therapy is very effective against lobular cancers.

What other questions do you have? Let me know in the comments. Don't worry about prying. If I don't want to answer, I won't.

Disclaimer: This information is based on my individual experience and shouldn't be extrapolated to anyone else. Cancer and its treatments are highly individualized.

Tuesday, September 8, 2015

In limbo: an update



I've had some folks ask me for an update, so here's what's new. I’m still doing quite well, considering I had major surgery 2.5 weeks ago. Pain is greatly reduced, but I still have a good amount of discomfort, and I still have drains in place. I just went to the plastic surgeon, and he thinks I should be able to get the drains removed in the next week or so. Once that happens, I'll start going back to the office. I had my first "expansion" today to gradually fill the tissue expanders to size before they are exchanged for implants. Ouch. At least my chest doesn't look like it's harboring Tom Brady's deflated footballs anymore.

Aside from the surgery, I’ll be getting hormone therapy, but there’s a slight possibility that chemo will be considered. I’m waiting for one more test result before figuring out what my treatment plan will be. This is the Oncotype DX, and it looks at the genes within the tumor to see how active they are and calculates the likelihood for future recurrence and how beneficial chemotherapy could be. I know my last update said no chemo or radiation, and truth be told, my oncologists is confident that chemotherapy is not the best option for me. Lobular cancers are typically slow-growing, and since chemo targets fast-changing cells, the data indicates that hormone therapy is the most effective tool. However, as I’ve mentioned, ask for more opinions and you will get them! A medical oncologist I know through work strongly suggested I have the test done because my pathology report showed that the cancer had some local spreading, even if it hadn’t made it to the nodes and even if there were clean margins. She explained that people with this lymphovascular invasion have a higher risk for recurrence, so the Oncotype might provide further insight. My oncologist reluctantly agreed, recognizing that I need to feel comfortable as we move forward. Either way, I’m looking at 1-2 more surgeries (to finish reconstruction and possible oopherectomy [removal of ovaries]). Those will probably be later in 2015.

In the meantime, I'm putting on some pounds from all the amazing food our friends are giving us. Our fridge runneth over! We also skipped town and spent a beautiful weekend with our dear friends at their family's beach house. The beach definitely soothes my soul, and I love watching my kids jump the waves and have a ball. We went crabbing, and Hope caught the biggest crab (which isn't saying much; most were much too small and only two were barely legal). She named it Pinchy and ate it with great joy. I guess my advice to not name your food wasn't necessary after all.

Thursday, September 3, 2015

Isn't science supposed to be a science?

Get a 2nd opinion, we always tell people.

Sounds great, but guess what? The 2nd opinion won't always agree with the 1st opinion. Okay, ask someone else. Oops, now there's a 3rd opinion. And who gets to adjudicate these differences of opinion? Yay, me!!

The problem is that I don't do like uncertainty. It makes me anxious. I love science because I love problem-solving. But, one thing I've learned in my years of health communications, is that it's rare for a problem to be truly solved to everyone's satisfaction. Google "research reproducibility" to see what a huge issue this is for the research community these days. Or read the popular press to learn that something we thought was good for you... eh, not so much (hormone replacement therapy, for example). Dozens of examples come to mind. Read what different reviewers say about publications submitted to peer-reviewed journals. Or just read some of the letters to the editor. Colleagues--all with impressive credentials--will criticize methodology, interpretation, or implications of most studies.

It makes for interesting communications work. But when you're the subject of disagreement, it sucks. We're looking for THE answer. We want to do anything that will save our lives. We don't want to look back and regret choices that could impact life or death.

I'm a huge believer in being my own advocate. I consider myself lucky that I have the kind of professional and personal experience to understand the vocabulary enough to hold a relatively intelligent conversation with my medical team and to be able to read and interpret scientific articles. I want to be actively involved in my treatment decisions. But there's a piece of me that wants to go hide and make all these experts go into a room, figure it out, and then come tell me the decision. Pat my pretty little head, and tell me not to worry, they will take good care of me.

Guess I can't have it both ways.

Wednesday, September 2, 2015

The details about my diagnosis

When I was 13 years old, my mother died of metastatic breast cancer. She was 40 and had been initially diagnosed at 33. Not that I knew that at the time. That was the late 1970s/early 1980s and in those days, people hardly even used the word "cancer" except in an occasional whisper. They certainly didn't use the word "breast" and even more certainly didn't tell children about it. So, it wasn't until a few months before she died that my mom and dad leveled with me. I had sort of figured it out, knowing she had a large scar on her breast and had frequent doctor's appointments. I learned later that she initially didn't have chemo, and when she did later on, she didn't lose her hair, so it wasn't hard to keep the secret. I figured it was something she had had in the past, and it was behind us. Looking back, I'm sure she hoped the same.

Anyway, when I was 19, it occured to me that my risk might be higher and I should do a breast self exam. This was in the early 90s when shower cards were beginning to proliferate, even on my college campus. Lo and behold, I found a lump. I had surgery a few months later and learned all about fibroadenomas. They are very common in younger women and completely benign. But thus started my surveillance as a "high risk" person.

Over the years, I had several more fibroadenomas, one of which also turned up atypical lobular hyperplasia. My breast surgeon recommended mammograms at 27 (5 years before my mother's diagnosis). After I had my children, I decided it was time for genetic testing. Turned out, I was BRCA negative! Phew! If I had been positive, I had already decided that I would have a prophylactic mastectomy and (if BRCA1+) oopherectomy. Even though I was negative, I still had a family history and atypical hyperplasia, so still considered high risk. The oncologist suggested I take tamoxifen and get high risk screenings, which meant alternating mammograms with breast MRIs, every 6 months, in addition to clinical breast exams.

For the first time, the cloud lifted. I was BRCA negative, but still being proactive in taking a proven breast cancer prevention medication. Maybe breast cancer wouldn't be my fate after all. The anxiety around the screening abated and I saw them as routine medical appointments, just like my semi-annual dental visit.

Just 18 months later, a day after a "routine" MRI, I got a call that there was a new finding that needed to be seen on ultrasound and biopsied. When I went for the appointment at the end of the week, the radiologist first had me get a 3D mammogram. No sign of the mass. He found it fairly easily on ultrasound, however, and he said he strongly suspected it was a small cancer. (You know your doctor is concerned when he hugs you on your way out, but I'll write about my medical team in another post.)

The following Monday he called me and confirmed it. Infiltrating and in-situ lobular carcinoma. ER/PR 100%, HER2 negative. All the docs seemed happy with that.

I learned since that lobular cancers make up only 10% of all breast cancers (the other 90% are ductal). They are typically slow growing, but very hard to see on mammograms, so most people with lobular cancers have much larger or more advanced cancers by the time they are discovered.

Since that day, it's been a flurry of phone calls, appointments, emails, etc. I had a bilateral mastectomy and now have tissue expanders in place in a multi-step reconstruction process. All of that  will be covered in future posts. This one is long enough and extraneous enough.