My first ever annual appointment with my surgical oncologist was very uneventful, as anyone would hope. He did a physical exam that lasted maybe 3 minutes and then was done. He didn't find anything and said he'd see me next year unless I found something of concern between now and then. I guess I should be doing self-exams, though it seems overkill with no breast tissue.
The more impressive part of the visit was with the Lymphedema specialist. First, I must give the James breast center huge KUDOS. I didn't have an appointment to see the Lymphedema specialist. I'd been meaning to make one for months. So I called them from the waiting room and told them I was in the office for an appointment with Povoski and they squeezed me in immediately after I saw the doctor. They were fabulous!
The specialist (who is a physical therapist) did all the measurements and said everything looked really good. I was slightly down from the last time I'd been in (which was . . . gasp . . . September). She said I had been managing the swelling very well and that I was due for a new glove in February. She did a really long treatment on my hand and arm which consists of a massage technique designed to activate the lymph system and get the fluid moving. It really helped and when she was done, you could hardly tell my hand was swollen at all. On my self-created swelling scale, it's probably a 1 out of 10 now. Going in to the appointment, it was about a 2 or 3. For some reason, I'm not very swollen this week. I have no idea why.
The PT and I talked about their group's pending move to the campus area which will be much more convenient for me. She also talked about the workout room they will have, the extra PTs, and some other services I may be able to get there, including some upper body workouts tailored just for me. I'm really looking forward to seeing them next time in mid-January at the new facility.
Ken noticed a sign in the doctor's office asking for volunteer survivors to give feedback to the James. The location for the feedback interview is in the same building where we work. I'll call the number tomorrow to see if they want to talk with me. I've got quite a bit of feedback to offer. I was much more impressed with Riverside's holistic assessment and consultation (that's where I got my second opinion) than the James' linear process (which I thwarted by making appointments I was advised not to make).
Showing posts with label ILC. Show all posts
Showing posts with label ILC. Show all posts
Tuesday, December 7, 2010
Monday, December 6, 2010
Tomorrow's appointment
Tomorrow I have my first annual follow-up appointment with my surgical oncologist. I've been so busy that I forgot about it until today. I have no idea what to expect. I know I'll have a physical exam because I can't have mammograms anymore. We'll probably talk about the lymphedema but I don't expect to learn anything from him about that. It may be just a quick check for lumps that might be hiding in any breast tissue he left behind. There should not be any breast tissue left behind, though - that's the whole intention of the bilateral mastectomy, after all.
This will be my first post-mastectomy appointment with a doctor who is not my plastic surgeon. It will be strange to have someone else seeing my breasts now. The scars are large and still very prominent, which means they will probably always be that way. It's been more than 6 months since my last reconstructive surgery.
This will be my first post-mastectomy appointment with a doctor who is not my plastic surgeon. It will be strange to have someone else seeing my breasts now. The scars are large and still very prominent, which means they will probably always be that way. It's been more than 6 months since my last reconstructive surgery.
Thursday, September 30, 2010
One year
It's been one year. I found out that I had breast cancer on Wednesday, September 30, 2009. I'm not sure whether it's time to celebrate, reflect, or lament. Maybe a bit of all three.
Below are the top 10 things I've learned since then:
10. Blogging can connect people who need each other.
Beth in Colorado found my blog. She was going through a bilateral mastectomy just a few weeks before me and was a great source for learning and encouragement. I also found great insight and knowledge in other blogs. Personal stories are much more meaningful than research statistics. So, here's a big thank you to the thought leaders at HR Technology Conference and Steverunner who inspired me to stop lurking in the new media world and start contributing.
9. Just because they find cancer early does not mean it will be easy. As a top 100 fundraiser for the Race for the Cure, I'd been to many events celebrating the advances in breast cancer research. I thought I knew a lot about it. I thought getting the cancer out was easy if it was caught early. I had no idea I'd get a bilateral mastectomy with cancer that was barely stage 1 . . . and Beth was stage 0.
8. ILC is hard to find and often hides until it's big enough to spread.
Not all breast cancers are easy to detect. Luckily, my digital mammogram showed grouped calcifications which warned my doctors to do a biopsy. If I had chosen a lumpectomy, a recurrence of ILC could go undetected until it had spread beyond my breasts.
7. Healthy, active, young women can still get breast cancer.
This year, I've read about many healthy, active women in their 20's and 30's who had breast cancer. I also have a friend whose wife was diagnosed in her 30's. It's not as uncommon as you'd think. I was 43 and a runner.
6. There are different types of breast cancer and different risks for treatment options.
Breast cancer does not have one obvious treatment. Statistics are all over the internet and different doctors present them differently too. No one had a clear cut, obvious data set that I could use to make treatment decisions. I did lots of research, got a second opinion, and even stepped out of the linear process the doctors wanted me to follow in my decision-making. In the end, it came down to this: I put myself in the place of a woman who had cancer spread throughout her body. And I heard myself begging "Can't you just cut it off? Get it out of me, now!" Well, that was the opportunity I had. And I took it.
5. Deciding to lose both breasts is a tough, emotional decision.
Many said it would be a no-brainer for them. If they got breast cancer, they would cut them off. I'm a poster-child for that concept. I don't wear makeup. I'm a feminist. I spend 20 minutes getting ready in the morning and 15 of that is in the shower. So, I was unprepared for the emotion involved in this decision. Even now it brings me to tears to realize that a year ago, I still had my real breasts, with working nipples and everything. I still look very similar in clothes, but very different getting out of the shower. I wonder when my reflection in a foggy mirror will not cause me to wince.
4. We all react differently.
In my mind, surgery was by far the best treatment option, especially if I could avoid chemo, radiation, and 5 years of Tamoxifen. A friend who has cancer was fine with chemo and radiation treatments but terrified of surgery. Physically, we react differently, too. Although I was not a high risk for lymphedema and just 6 lymph nodes were removed, I developed lymphedema in my left hand about 5 months after the mastectomy. I have no idea how or why this happened.
3. I am strong and resilient.
As a comment to my first blog post, my parents wrote that they had all the confidence in the world that I have the tools needed to get though this myself -- "strength, wisdom, determination, and goodness." My brother also told me that he thinks of me as an incredibly strong woman. I was able to reach deep inside and find the strength my family knew was there. Now I know it is there, too.
2. I am blessed with incredible family, friends, and colleagues.
Thank you to all who have helped me get through these challenges. I had advisors, listeners, food preparers, care givers, pray-ers, and many people who just helped me get on with life. My boss was incredibly supportive, as were my staff and colleagues. Friends (including Lee Ann, Michelle, Jim, Eunice, Bethany, Becky, David, and many others) were instrumental in getting me though this. Family sent cards and called. Michelle, Jan, Jim, and my parents, Don and Rosemary helped care for me and my family when I most needed them. Thank you all!!!
1. I have the best husband and children in the world.
Yes, I know I'm biased. But I also know I'm right. My children are wonderful - caring, loving, supporting, strong, and helpful. My husband is beyond amazing and he loves me for who I am and finds me sexy and beautiful with each set of breasts I've had this year (real, expanders, and now implants). I thank God for my family each and every day. And, through this ordeal, I have learned that I should never wait until tomorrow to show them I care and I will never take them for granted. I love you, Val, Jason, and Ken!
Below are the top 10 things I've learned since then:
10. Blogging can connect people who need each other.
Beth in Colorado found my blog. She was going through a bilateral mastectomy just a few weeks before me and was a great source for learning and encouragement. I also found great insight and knowledge in other blogs. Personal stories are much more meaningful than research statistics. So, here's a big thank you to the thought leaders at HR Technology Conference and Steverunner who inspired me to stop lurking in the new media world and start contributing.
9. Just because they find cancer early does not mean it will be easy. As a top 100 fundraiser for the Race for the Cure, I'd been to many events celebrating the advances in breast cancer research. I thought I knew a lot about it. I thought getting the cancer out was easy if it was caught early. I had no idea I'd get a bilateral mastectomy with cancer that was barely stage 1 . . . and Beth was stage 0.
8. ILC is hard to find and often hides until it's big enough to spread.
Not all breast cancers are easy to detect. Luckily, my digital mammogram showed grouped calcifications which warned my doctors to do a biopsy. If I had chosen a lumpectomy, a recurrence of ILC could go undetected until it had spread beyond my breasts.
7. Healthy, active, young women can still get breast cancer.
This year, I've read about many healthy, active women in their 20's and 30's who had breast cancer. I also have a friend whose wife was diagnosed in her 30's. It's not as uncommon as you'd think. I was 43 and a runner.
6. There are different types of breast cancer and different risks for treatment options.
Breast cancer does not have one obvious treatment. Statistics are all over the internet and different doctors present them differently too. No one had a clear cut, obvious data set that I could use to make treatment decisions. I did lots of research, got a second opinion, and even stepped out of the linear process the doctors wanted me to follow in my decision-making. In the end, it came down to this: I put myself in the place of a woman who had cancer spread throughout her body. And I heard myself begging "Can't you just cut it off? Get it out of me, now!" Well, that was the opportunity I had. And I took it.
5. Deciding to lose both breasts is a tough, emotional decision.
Many said it would be a no-brainer for them. If they got breast cancer, they would cut them off. I'm a poster-child for that concept. I don't wear makeup. I'm a feminist. I spend 20 minutes getting ready in the morning and 15 of that is in the shower. So, I was unprepared for the emotion involved in this decision. Even now it brings me to tears to realize that a year ago, I still had my real breasts, with working nipples and everything. I still look very similar in clothes, but very different getting out of the shower. I wonder when my reflection in a foggy mirror will not cause me to wince.
4. We all react differently.
In my mind, surgery was by far the best treatment option, especially if I could avoid chemo, radiation, and 5 years of Tamoxifen. A friend who has cancer was fine with chemo and radiation treatments but terrified of surgery. Physically, we react differently, too. Although I was not a high risk for lymphedema and just 6 lymph nodes were removed, I developed lymphedema in my left hand about 5 months after the mastectomy. I have no idea how or why this happened.
3. I am strong and resilient.
As a comment to my first blog post, my parents wrote that they had all the confidence in the world that I have the tools needed to get though this myself -- "strength, wisdom, determination, and goodness." My brother also told me that he thinks of me as an incredibly strong woman. I was able to reach deep inside and find the strength my family knew was there. Now I know it is there, too.
2. I am blessed with incredible family, friends, and colleagues.
Thank you to all who have helped me get through these challenges. I had advisors, listeners, food preparers, care givers, pray-ers, and many people who just helped me get on with life. My boss was incredibly supportive, as were my staff and colleagues. Friends (including Lee Ann, Michelle, Jim, Eunice, Bethany, Becky, David, and many others) were instrumental in getting me though this. Family sent cards and called. Michelle, Jan, Jim, and my parents, Don and Rosemary helped care for me and my family when I most needed them. Thank you all!!!
1. I have the best husband and children in the world.
Yes, I know I'm biased. But I also know I'm right. My children are wonderful - caring, loving, supporting, strong, and helpful. My husband is beyond amazing and he loves me for who I am and finds me sexy and beautiful with each set of breasts I've had this year (real, expanders, and now implants). I thank God for my family each and every day. And, through this ordeal, I have learned that I should never wait until tomorrow to show them I care and I will never take them for granted. I love you, Val, Jason, and Ken!
Wednesday, June 2, 2010
Lymphedema
I'm trying to type this post with a left hand that is wrapped with 3 layers. First, a thin fabric piece that looks like a fingerless glove. Then each finger is wrapped separately in a thin cloth bandage that also wraps around my hand and wrist and a little higher on my arm. And it's all topped off with an ace bandage (but less stretchy than an ace bandage) that is wrapped around my hand, between my thumb and pointer finger, and up my arm almost to my elbow.
All this because I do indeed have Lymphedema. The very nice physical therapist said it makes no sense that I have it "based on what I had done" and the absence of other risk factors, but I do have Lymphedmea.
If you're new to the blog, I'll recap. I had ILC breast cancer in the left breast, stage 1, with pervasive LCIS (pre-cancer marker) around the area. So "what I had done" was a bilateral mastectomy with 3 sentiniel lymph nodes taken out of the left side plus 3 lymph nodes that were removed with the breast. I guess that was a few too many nodes removed for me. Subsequently, I had reconstructive surgery and got my semi-permanent gel implants last week.)
Back to the Lymphedema treatment:
Today was no less hectic than yesterday. I worked until 1:45, then ate lunch in 15 minutes, then drove to my appointment at the cancer treatment center. And I really didn't want to go there. It's a sad place. I don't have cancer anymore. Why can't I go somewhere else. Ahh, because this is where they know about follow up non-cancer problems like Lymphedema.
Then I came home and worked more and tried to help Valerie with a craft project for school (we failed and decided to wait for Ken). Now Ken has taken both kids away and I'm home with instructions to go for a walk or relax or do something good for me. It's 90 degrees out at 6:44pm. And I have a wrapped arm. I don't think I'll walk just yet.
On a lighter note, the PT asked me if I was convalescing (to spend time recovering from an illness or the effects of medical treatment, especially by resting), so I told her about my day yesterday. For the rest of the appointment, we joked about my convalescence period. Seriously, she did say coming in now was advantageous so we could jump on the compression treatment during this time when I am not allowed to run anyway. Okay, yes, that is good.
So it hasn't all sunk in yet, but I'm pretty sure I'm discouraged by the new state of affairs. Do I really need another excuse to stop walking or running? I've got plenty in my pocket already. Now a huge very obvious reason is attached to my arm. Was my life getting too easy? Was I recovering too well? Why did this have to happen along with all the other difficult things I have going on?
And there are no answers. No answers as to why. No answers as to whether it will ever go away. No answers to how long I have to wear bandages or gloves or compression sleeves.
Day 5 of South Beach Diet
Breakfast: black beans, green pepper, and mushroom fried with egg substitute and a little olive oil
Lunch: two pieces of ham, a small piece of cheese, a small cucumber, and a piece of string cheese
Snack: a little can of V8 (5.5oz)
Dinner: chicken breast on romaine with hummus for dressing
Dessert made by my wonderful husband: a recipe from the South Beach Diet book, something with riccota cheese, splenda, unsweetened cocoa, vanilla extract, and toasted almonds. It was wonderful.
Drinks: water all day
- 1 hour later -
OK, so I did go out to walk. I did 3 miles: 16:53, 16:14, and 14:35. A HUGE black mass of clouds roared in during the last half mile and I thought I could beat it but at .25 to go, gusts of winds picked up, all got black, rumbling everywhere. So yea, I ran. A little. Okay, about 10:30 pace. And I ran a little less than .25. Oh well. I needed it. It was kinda fun to just barely beat the brunt of the storm.
All this because I do indeed have Lymphedema. The very nice physical therapist said it makes no sense that I have it "based on what I had done" and the absence of other risk factors, but I do have Lymphedmea.
If you're new to the blog, I'll recap. I had ILC breast cancer in the left breast, stage 1, with pervasive LCIS (pre-cancer marker) around the area. So "what I had done" was a bilateral mastectomy with 3 sentiniel lymph nodes taken out of the left side plus 3 lymph nodes that were removed with the breast. I guess that was a few too many nodes removed for me. Subsequently, I had reconstructive surgery and got my semi-permanent gel implants last week.)
Back to the Lymphedema treatment:
- The first course of action is to keep my hand and lower arm wrapped until my two affected fingers go back down to the same size as the right hand. If they do. It's possible they won't. Let's be positive and assume they do.
- Once my fingers are back to normal size, then we consider putting on a glove and/or glove with sleeve that I wear all the time for a while to maintain the correct size. If this works, which it might not, but hey, again, let's be hopeful, then on to treatment 3.
- In the next treatment, I only need to wear a glove (and perhaps a sleeve too) when I exercise. If this keeps my drainage working properly, I will not have to go back and do it all again.
- If I'm really, really lucky, I could ease off wearing the glove/sleeve when I exercise and watch the hand to ensure it doesn't start the whole process all over again. If it doesn't I may be one of the few who gets to move past Lymphedma and does not have to manage it for a lifetime.
Today was no less hectic than yesterday. I worked until 1:45, then ate lunch in 15 minutes, then drove to my appointment at the cancer treatment center. And I really didn't want to go there. It's a sad place. I don't have cancer anymore. Why can't I go somewhere else. Ahh, because this is where they know about follow up non-cancer problems like Lymphedema.
Then I came home and worked more and tried to help Valerie with a craft project for school (we failed and decided to wait for Ken). Now Ken has taken both kids away and I'm home with instructions to go for a walk or relax or do something good for me. It's 90 degrees out at 6:44pm. And I have a wrapped arm. I don't think I'll walk just yet.
On a lighter note, the PT asked me if I was convalescing (to spend time recovering from an illness or the effects of medical treatment, especially by resting), so I told her about my day yesterday. For the rest of the appointment, we joked about my convalescence period. Seriously, she did say coming in now was advantageous so we could jump on the compression treatment during this time when I am not allowed to run anyway. Okay, yes, that is good.
So it hasn't all sunk in yet, but I'm pretty sure I'm discouraged by the new state of affairs. Do I really need another excuse to stop walking or running? I've got plenty in my pocket already. Now a huge very obvious reason is attached to my arm. Was my life getting too easy? Was I recovering too well? Why did this have to happen along with all the other difficult things I have going on?
And there are no answers. No answers as to why. No answers as to whether it will ever go away. No answers to how long I have to wear bandages or gloves or compression sleeves.
Day 5 of South Beach Diet
Breakfast: black beans, green pepper, and mushroom fried with egg substitute and a little olive oil
Lunch: two pieces of ham, a small piece of cheese, a small cucumber, and a piece of string cheese
Snack: a little can of V8 (5.5oz)
Dinner: chicken breast on romaine with hummus for dressing
Dessert made by my wonderful husband: a recipe from the South Beach Diet book, something with riccota cheese, splenda, unsweetened cocoa, vanilla extract, and toasted almonds. It was wonderful.
Drinks: water all day
- 1 hour later -
OK, so I did go out to walk. I did 3 miles: 16:53, 16:14, and 14:35. A HUGE black mass of clouds roared in during the last half mile and I thought I could beat it but at .25 to go, gusts of winds picked up, all got black, rumbling everywhere. So yea, I ran. A little. Okay, about 10:30 pace. And I ran a little less than .25. Oh well. I needed it. It was kinda fun to just barely beat the brunt of the storm.
Tuesday, March 2, 2010
Reflecting on my treatment decision
I ran on the RPAC track today. Despite doing well on the diet, I had a more energy than the past few running attempts, so that's good. After 1.5 miles though, my lower back was hurting quite a bit - a clear sign that my hamstrings were way too tight. I stopped after 2 miles to stretch and do some ab work for about 20 minutes and then went back to run a third mile and quick-walk a fourth. My miles were 10:47, 10:56, (break),10:52, 15:38.
The diet is going well since I got serious about it, probably Thurs or Fri last week. I'm not that far into it though I've already seen results. The things I'm eating none of include: sweets, white breads, pasta, tortillas, and anything fried. The things I'm eating less often than before: whole grain breads, salad dressing, pria bars, and diet coke. The things I'm eating more often: avocados, fresh spinach, sunflower seeds, oranges, light yogurt, lettuce, tea, and a glass of red wine.
In successful diets in of past, I was much more restrictive in food groups and almost totally cut carbs for at least a couple of weeks and then very, very slowly added them back at one food per week, starting with green beans. It was successful, but I worry it may have contributed to my LCIS becoming ILC. I read something about a researcher looking into a connection between low carb diets and breast cancer, but I don't know of any evidence to support that idea. Regardless of whether diet was a contributing factor, I was okay with that diet when I was a ridiculously healthy person with low cholesterol and good blood pressure - and no cancer and no rehab issues. Unfortunately, I am not that person anymore. Now I need to find a new way to lose and manage my weight while still getting good nutrition.
I haven't written much about cancer/rehab lately because I'm getting on with life right now. I admit that I am reminded often of my plight, however. The other day, I saw a women walking on the RPAC track wearing a bandana and with thin hair peaking out from under it. I created stories about her in my head of course: That she had cancer and endured chemo and is just getting energy back . . . that she had it tougher than I did . . . that she is strong and impressive for beginning the exercising again. Of course, I don't know really know her story. But she reminded me of mine.
As I drove into the parking garage this morning, I heard a teaser on WOSU radio that made me hurry into my office so I could hear the story streaming online before my meeting. It was about an OSU breast cancer researcher who has found that more women are choosing radical treatments for breast cancer than before. She went on to say that prophylactic (proactive) mastectomies are being chosen by breast cancer patients who are in Stage 1, younger, highly educated, and often have a history of breast cancer in the family. I'll bet my case was one of the numbers she included from her database research.
She is researching this phenomenon because she is concerned these cancer patients (we) might have mis-information from doctors informing our decisions. Since the survival rate is the same for those of us who have lumpectomies vs. mastectomies vs. prophylactic mastectomies, she wonders if too many of us are choosing the radical treatment. She did go on to recognize that we are making these choices because we have a lot of life ahead of us and don't want to deal with breast cancer again. However, she thinks the low instance of recurrence (she quoted 8 to 14% for people who do not have the family gene) does not warrant the high instances of prophylactic mastectomy treatment.
I chose to have a mastectomy on the breast with the cancer and a prophylactic mastectomy of the other breast. Since my surgery, I've read about other women with a similar diagnosis (stage 1 ILC and LCIS) who chose the other route that was an option for me, the lumpectomy. I've read about these women (who could be me) enduring chemo and radiation and getting all sorts of other terrible ailments from those treatments. They have longer recovery times and have much less energy for life for months and months. When they are pronounced cancer-free, they start the regimen of taking tamoxifin for 5 years and visit the mammography clinic every 6 months. I know I'm over-generalizing, and everyone has a different treatment plan, but it's not an unrealistic process I describe here. It is very real for many people who were diagnosed with stage 1 ILC and LCIS as I was. And I haven't even mentioned what it is like for the ~1 in 9 women who, despite what sounds like low odds, actually do have a recurrence and start the whole process over again.
I'm not saying that the decision I made was right for everyone. It was right for me, though. And I certainly don't want to discount the concerns of the researcher. I am grateful she is doing the work she is doing and thankful she makes a difference in the lives of women who are touched by this disease. However, in this case, I don't share her concerns. I'm not worried that I made the wrong decision with inaccurate data. I know I probably wouldn't have died from this disease within the next 20 years even if I had chosen the lumpectomy. However, what about the following 20 years? And the following 20 after that? I feel like I've been given a gift to have caught it so early and to not be worried about survival. Would I be so lucky the next time? Next time would it have been stage 2 or worse? Next time would it have gotten into my lymph nodes and required chemo? So I guess I said carpe diem. Besides, there are many more factors than survival at work here.
As tough as the process has been, I've been sidelined for a surprisingly small amount of time. Even in the middle of all this, as I am right now, I am doing pretty much everything I would have been doing if I had not been diagnosed. And I made a major impact on the likelihood that I will not have a recurrence. As the researcher said, I really don't want to go through this again. I no longer have 1 in 10 odds. For me, it's more like 1 in 100 that I'll be diagnosed with breast cancer again.
The diet is going well since I got serious about it, probably Thurs or Fri last week. I'm not that far into it though I've already seen results. The things I'm eating none of include: sweets, white breads, pasta, tortillas, and anything fried. The things I'm eating less often than before: whole grain breads, salad dressing, pria bars, and diet coke. The things I'm eating more often: avocados, fresh spinach, sunflower seeds, oranges, light yogurt, lettuce, tea, and a glass of red wine.
In successful diets in of past, I was much more restrictive in food groups and almost totally cut carbs for at least a couple of weeks and then very, very slowly added them back at one food per week, starting with green beans. It was successful, but I worry it may have contributed to my LCIS becoming ILC. I read something about a researcher looking into a connection between low carb diets and breast cancer, but I don't know of any evidence to support that idea. Regardless of whether diet was a contributing factor, I was okay with that diet when I was a ridiculously healthy person with low cholesterol and good blood pressure - and no cancer and no rehab issues. Unfortunately, I am not that person anymore. Now I need to find a new way to lose and manage my weight while still getting good nutrition.
I haven't written much about cancer/rehab lately because I'm getting on with life right now. I admit that I am reminded often of my plight, however. The other day, I saw a women walking on the RPAC track wearing a bandana and with thin hair peaking out from under it. I created stories about her in my head of course: That she had cancer and endured chemo and is just getting energy back . . . that she had it tougher than I did . . . that she is strong and impressive for beginning the exercising again. Of course, I don't know really know her story. But she reminded me of mine.
As I drove into the parking garage this morning, I heard a teaser on WOSU radio that made me hurry into my office so I could hear the story streaming online before my meeting. It was about an OSU breast cancer researcher who has found that more women are choosing radical treatments for breast cancer than before. She went on to say that prophylactic (proactive) mastectomies are being chosen by breast cancer patients who are in Stage 1, younger, highly educated, and often have a history of breast cancer in the family. I'll bet my case was one of the numbers she included from her database research.
She is researching this phenomenon because she is concerned these cancer patients (we) might have mis-information from doctors informing our decisions. Since the survival rate is the same for those of us who have lumpectomies vs. mastectomies vs. prophylactic mastectomies, she wonders if too many of us are choosing the radical treatment. She did go on to recognize that we are making these choices because we have a lot of life ahead of us and don't want to deal with breast cancer again. However, she thinks the low instance of recurrence (she quoted 8 to 14% for people who do not have the family gene) does not warrant the high instances of prophylactic mastectomy treatment.
I chose to have a mastectomy on the breast with the cancer and a prophylactic mastectomy of the other breast. Since my surgery, I've read about other women with a similar diagnosis (stage 1 ILC and LCIS) who chose the other route that was an option for me, the lumpectomy. I've read about these women (who could be me) enduring chemo and radiation and getting all sorts of other terrible ailments from those treatments. They have longer recovery times and have much less energy for life for months and months. When they are pronounced cancer-free, they start the regimen of taking tamoxifin for 5 years and visit the mammography clinic every 6 months. I know I'm over-generalizing, and everyone has a different treatment plan, but it's not an unrealistic process I describe here. It is very real for many people who were diagnosed with stage 1 ILC and LCIS as I was. And I haven't even mentioned what it is like for the ~1 in 9 women who, despite what sounds like low odds, actually do have a recurrence and start the whole process over again.
I'm not saying that the decision I made was right for everyone. It was right for me, though. And I certainly don't want to discount the concerns of the researcher. I am grateful she is doing the work she is doing and thankful she makes a difference in the lives of women who are touched by this disease. However, in this case, I don't share her concerns. I'm not worried that I made the wrong decision with inaccurate data. I know I probably wouldn't have died from this disease within the next 20 years even if I had chosen the lumpectomy. However, what about the following 20 years? And the following 20 after that? I feel like I've been given a gift to have caught it so early and to not be worried about survival. Would I be so lucky the next time? Next time would it have been stage 2 or worse? Next time would it have gotten into my lymph nodes and required chemo? So I guess I said carpe diem. Besides, there are many more factors than survival at work here.
As tough as the process has been, I've been sidelined for a surprisingly small amount of time. Even in the middle of all this, as I am right now, I am doing pretty much everything I would have been doing if I had not been diagnosed. And I made a major impact on the likelihood that I will not have a recurrence. As the researcher said, I really don't want to go through this again. I no longer have 1 in 10 odds. For me, it's more like 1 in 100 that I'll be diagnosed with breast cancer again.
Subscribe to:
Posts (Atom)