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 15, 2015
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.
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.
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.
Thursday, August 27, 2015
The value of a positive attitude
Frankly, I've been somewhat surprised at how many people are congratulating me on my "positive attitude." There's no doubt that I'm a very pragmatic, direct person. I often have to remind myself that people need to hear niceties to feel good about themselves. It's not that I have nothing nice to say, it's just that I think a good job speaks for itself, so telling someone "nice job," giving them some external validation, was something I had to be taught.
So, I'm certainly not telling people that I have cancer and going through the motions in any kind of cheery way. I don't think I'm relying on platitudes. I don't believe this is God's great plan or that it's happening for some kind of greater reason. I think there's probably some genetic error that is making my cells grow abnormally. Period. It's annoying. It's concerning. But I'm also not melting down over it. As they say up north, it is what it is.
So far, things look promising, as far as cancers go. It's small, looks localized. Should have been easy to remove surgically. We'll see what other treatment makes the most sense in terms of need and anticipated benefit. Whatever I do, I know that 30 percent of women with early stage breast cancer will ultimately have a metastatic recurrence. It could happen, but it might not. Anyway, it's probably not going to happen in the immediate future. So, why not treat what we can, try to prevent as best we can, and continue to live life as fully as I can? Why waste energy on false hope or unreasonable despair?
I think a positive attitude makes one a more pleasant person to be around. It may even make one happier. But it doesn't change clinical outcomes. I need to rely on the best scientific information to make my decisions, realizing that well-powered data must then fit me as an N of 1. What happens from there will depend on the science we know as well as what we don't know. As we learn more, we'll see if it can be applied to my case.
In the meantime, I do have a range of emotions. Sometimes I'm really angry. Sometimes I'm grateful for the wake-up call. Sometimes I'm sad when I look at my children and wonder what the future holds for us. Overall, I'm focused on doing what I need to do to get ahead of the cancer and to live each moment the best I can.
So, I'm certainly not telling people that I have cancer and going through the motions in any kind of cheery way. I don't think I'm relying on platitudes. I don't believe this is God's great plan or that it's happening for some kind of greater reason. I think there's probably some genetic error that is making my cells grow abnormally. Period. It's annoying. It's concerning. But I'm also not melting down over it. As they say up north, it is what it is.
So far, things look promising, as far as cancers go. It's small, looks localized. Should have been easy to remove surgically. We'll see what other treatment makes the most sense in terms of need and anticipated benefit. Whatever I do, I know that 30 percent of women with early stage breast cancer will ultimately have a metastatic recurrence. It could happen, but it might not. Anyway, it's probably not going to happen in the immediate future. So, why not treat what we can, try to prevent as best we can, and continue to live life as fully as I can? Why waste energy on false hope or unreasonable despair?
I think a positive attitude makes one a more pleasant person to be around. It may even make one happier. But it doesn't change clinical outcomes. I need to rely on the best scientific information to make my decisions, realizing that well-powered data must then fit me as an N of 1. What happens from there will depend on the science we know as well as what we don't know. As we learn more, we'll see if it can be applied to my case.
In the meantime, I do have a range of emotions. Sometimes I'm really angry. Sometimes I'm grateful for the wake-up call. Sometimes I'm sad when I look at my children and wonder what the future holds for us. Overall, I'm focused on doing what I need to do to get ahead of the cancer and to live each moment the best I can.
Wednesday, August 26, 2015
C'mon, another breast cancer blog?
I know. It's like every person who has gotten this diagnosis needs to take residence in some corner of the inter tubes to tell her special story. If I want to document this friggin' "journey," I can just open one of my bedside notebooks, right? Not like I can find a comfortable position in bed anyway.
I don't consider myself a radiant ray of sunshine, but I am so grateful for so many things, and as I was posting my brief updates on Facebook, I was surprised that people 1) lauded my "positive attitude," and 2) wanted more details. Well, I'm afraid the details aren't always so positive, but I can give details.
So here goes.
I don't consider myself a radiant ray of sunshine, but I am so grateful for so many things, and as I was posting my brief updates on Facebook, I was surprised that people 1) lauded my "positive attitude," and 2) wanted more details. Well, I'm afraid the details aren't always so positive, but I can give details.
So here goes.
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