My surgery yesterday went wonderfully well. It couldn’t have had a better outcome short of finding out that the lump wasn’t malignant after all.
Dr. Kollmorgan did a lumpectomy and dissected the sentinel lymph node. She found no cancer cells. More testing will follow to confirm her finding but it certainly sounds like good news to me. Chuck and I are both giddy with relief and happiness. Of course the Percocet may get a little credit…
Even with the optimistic findings so far, there will be radiation treatment for sure and probably chemo therapy as well. They want to clean out every stray cancer cell that might be lurking in my body. We will know the schedule after we meet with Dr. Cho May 20th. I will see Dr. Kollmorgan again on May 8th and she will have the results of the tissue and lymph node tests by then. Even if the decision is to do both radiation and chemo, the treatment will be much easier on me knowing that we are just cleaning up rather than trying to control a cancer that has spread to other areas.
This surgery has been one of the “easiest” I have ever had. The pain is quite manageable and my mobility is very good. Of course the Percocet is helping on both counts. I haven’t peeked under the dressing yet but I can tell there is plenty of breast tissue left. One of my expectations was that I might wake with a cavern where my breast used to be. I was prepared and willing to deal with that but am glad I don’t have to. Once the treatments are over, I can think about “rightsizing” leftie, but that is not something I have to deal with now.
For now, I just want to enjoy the giddy good feeling of having so much anxiety lifted from me. I am full of gratitude for the prayers and love of friends. I won’t give the Percocet credit for that!
.
Wednesday, April 29, 2009
Saturday, April 25, 2009
TMI II
I saw a disturbing article in the NY Times yesterday. This is a good example of how too much information can be a bad thing. It’s long but worth reading. Here is an excerpt:
Cancer has always been an expensive priority. Since the war on cancer began, the National Cancer Institute, the federal government’s main cancer research entity, with 4,000 employees, has alone spent $105 billion. And other government agencies, universities, drug companies and philanthropies have chipped in uncounted billions more.
Yet the death rate for cancer, adjusted for the size and age of the population, dropped only 5 percent from 1950 to 2005. In contrast, the death rate for heart disease dropped 64 percent in that time, and for flu and pneumonia, it fell 58 percent.
Still, the perception, fed by the medical profession and its marketers, and by popular sentiment, is that cancer can almost always be prevented. If that fails, it can usually be treated, even beaten.
The good news is that many whose cancer has not spread do well, as they have in the past. In some cases, like early breast cancer, drugs introduced in the past decade have made an already good prognosis even better. And a few rare cancers, like chronic myeloid leukemia, can be controlled for years with new drugs. Cancer treatments today tend to be less harsh. Surgery is less disfiguring, chemotherapy less disabling.
But difficulties arise when cancer spreads, and, often, it has by the time of diagnosis. That is true for the most common cancers as well as rarer ones. With breast cancer, for example, only 20 percent with metastatic disease — cancer that has spread outside the breast, like to bones, brain, lungs or liver — live five years or more, barely changed since the war on cancer began.
What has happened? Is cancer just an impossibly hard problem? Or is the United States, the only country to invest so much in cancer research, making fundamental mistakes in the way it fights the cancer war?
Researchers say the answer is yes on both counts. Cancer is hard — it is not one disease or, if it is, no one has figured out the weak link in cancer cells that would lead to a cure. Instead, cancer investigators say, the more they study cancer, the more complex it seems. …The grim facts about cancer can be lost among the positive messages from the news media, advocacy groups and medical centers, and even labels on foods and supplements, hinting that they can fight or prevent cancer. The words tend to be carefully couched, but their impression is unmistakable and welcomed: cancer is preventable if you just eat right and exercise. If you are screened regularly, cancers can be caught early and almost certainly will be cured. If by some awful luck, your cancer is potentially deadly, miraculous new treatments and more in the pipeline could cure you or turn your cancer into a manageable disease.
Unfortunately, as many with cancer have learned, the picture is not always so glowing. It turns out that, with few exceptions, mostly childhood cancers and testicular cancer, there is no cure once a cancer has spread. The best that can be done is to keep it at bay for a while.
As a doctor who tries to be honest with patients, Dr. Saltz says he sees the allure of illusions. “It would be very hard and insensitive to say, ‘All I’ve got is a drug that will cost $10,000 a month and give you an average survival benefit of a month or two,’ ” he said. “The details are very, very tough to deal with.”
This information is upsetting. I’m fairly sure that all of it is “true” but I am so glad I didn’t read it at the time of my previous diagnosis and treatment! If I had, I might have been tempted to forego treatment in favor of a cruise or a beach retreat. Of course either would have been easier, but then I wouldn’t be here.
I have always known that I “beat the odds” but I never realized just how high those odds were. I know that cancer can be defeated with aggressive treatment and I know many breast cancer survivors. I’m very optimistic that I will join their ranks.
This is a good time to remind myself that I am not a statistic. If only one percent survive in a given set of circumstances, we should always remember that we can be that one. So fight the good fight and go to the beach later. That seems like a good plan.
.
Cancer has always been an expensive priority. Since the war on cancer began, the National Cancer Institute, the federal government’s main cancer research entity, with 4,000 employees, has alone spent $105 billion. And other government agencies, universities, drug companies and philanthropies have chipped in uncounted billions more.
Yet the death rate for cancer, adjusted for the size and age of the population, dropped only 5 percent from 1950 to 2005. In contrast, the death rate for heart disease dropped 64 percent in that time, and for flu and pneumonia, it fell 58 percent.
Still, the perception, fed by the medical profession and its marketers, and by popular sentiment, is that cancer can almost always be prevented. If that fails, it can usually be treated, even beaten.
The good news is that many whose cancer has not spread do well, as they have in the past. In some cases, like early breast cancer, drugs introduced in the past decade have made an already good prognosis even better. And a few rare cancers, like chronic myeloid leukemia, can be controlled for years with new drugs. Cancer treatments today tend to be less harsh. Surgery is less disfiguring, chemotherapy less disabling.
But difficulties arise when cancer spreads, and, often, it has by the time of diagnosis. That is true for the most common cancers as well as rarer ones. With breast cancer, for example, only 20 percent with metastatic disease — cancer that has spread outside the breast, like to bones, brain, lungs or liver — live five years or more, barely changed since the war on cancer began.
What has happened? Is cancer just an impossibly hard problem? Or is the United States, the only country to invest so much in cancer research, making fundamental mistakes in the way it fights the cancer war?
Researchers say the answer is yes on both counts. Cancer is hard — it is not one disease or, if it is, no one has figured out the weak link in cancer cells that would lead to a cure. Instead, cancer investigators say, the more they study cancer, the more complex it seems. …The grim facts about cancer can be lost among the positive messages from the news media, advocacy groups and medical centers, and even labels on foods and supplements, hinting that they can fight or prevent cancer. The words tend to be carefully couched, but their impression is unmistakable and welcomed: cancer is preventable if you just eat right and exercise. If you are screened regularly, cancers can be caught early and almost certainly will be cured. If by some awful luck, your cancer is potentially deadly, miraculous new treatments and more in the pipeline could cure you or turn your cancer into a manageable disease.
Unfortunately, as many with cancer have learned, the picture is not always so glowing. It turns out that, with few exceptions, mostly childhood cancers and testicular cancer, there is no cure once a cancer has spread. The best that can be done is to keep it at bay for a while.
As a doctor who tries to be honest with patients, Dr. Saltz says he sees the allure of illusions. “It would be very hard and insensitive to say, ‘All I’ve got is a drug that will cost $10,000 a month and give you an average survival benefit of a month or two,’ ” he said. “The details are very, very tough to deal with.”
This information is upsetting. I’m fairly sure that all of it is “true” but I am so glad I didn’t read it at the time of my previous diagnosis and treatment! If I had, I might have been tempted to forego treatment in favor of a cruise or a beach retreat. Of course either would have been easier, but then I wouldn’t be here.
I have always known that I “beat the odds” but I never realized just how high those odds were. I know that cancer can be defeated with aggressive treatment and I know many breast cancer survivors. I’m very optimistic that I will join their ranks.
This is a good time to remind myself that I am not a statistic. If only one percent survive in a given set of circumstances, we should always remember that we can be that one. So fight the good fight and go to the beach later. That seems like a good plan.
.
Friday, April 24, 2009
Five Days and Counting
I saw the anesthesiologist yesterday for my EKG, blood work and instructions for surgery. Now all I will have to do is stay healthy so that surgery won't be delayed further. This is the first time in my life I have had surgery when I feel good. There is nothing to "fix". At least nothing I can feel. That's a little disconcerting.
I will begin a course of treatment that includes surgery, chemo and radiation--all of which will make me feel bad in one way or another and right now I feel just fine. There is no pain and if I didn't know that there was cancer inside me, I would have no physical clues at all. It's all very odd. I do not dread the surgery, but I do dread being unable to do things afterwards. Oh well. I know I must simply put one foot in front of the other until it is finished and all my treatments are over. Then I can try to reclaim my life and do the things I enjoy.
Meanwhile, we are on several prayer chains covering several denominations including Georgian Orthodox. Prayers traveling up from around the world in Georgia, Oklahoma, Washington, Oregon, Utah, Texas, California... I can imagine God thinking, "Who is this woman anyway?" Actually I’m pretty sure He remembers saving me once before.
Maybe He wants to know if I made good use of the thirteen years He gave me. I hope He approves of some of the things I’ve done, but of course I fell short. I know I could have done better. That’s why there’s Grace and thank God for it!
.
Monday, April 20, 2009
Filters Off
Angry is something I long ago decided to do without. I don’t like how anger makes me feel and anger in others is scary for me. I decided I wanted to be a kind, patient person and then did every thing I could to become that sort of person. Lately, whatever filters I installed to help me avoid anger seem to be malfunctioning.
I don’t know how to handle anger. When I was little, my step-father’s anger was terrifying. It never occurred to me that I could be angry back at him. That just wasn’t an option. My mother may have been angry at times but she rarely showed it. I just didn’t have a model for how to deal with anger. Run away, duck and cover or pacify were my only tools. They have more or less been what worked for me.
I am much more familiar with anxiety. Anxiety feels like a hot rush that makes my skin feel clammy and my heart race. I’ve been feeling that lately and it’s not comfortable but at least it’s familiar. Anger feels a lot like that in some ways. The same hot rush and racing heart but in addition there is a feeling of wanting to do some damage: break things, throw things, drive into a wall or off a cliff. I don’t see how any of these things would help, but it’s what I feel like doing.
I want my filters back.
.
I don’t know how to handle anger. When I was little, my step-father’s anger was terrifying. It never occurred to me that I could be angry back at him. That just wasn’t an option. My mother may have been angry at times but she rarely showed it. I just didn’t have a model for how to deal with anger. Run away, duck and cover or pacify were my only tools. They have more or less been what worked for me.
I am much more familiar with anxiety. Anxiety feels like a hot rush that makes my skin feel clammy and my heart race. I’ve been feeling that lately and it’s not comfortable but at least it’s familiar. Anger feels a lot like that in some ways. The same hot rush and racing heart but in addition there is a feeling of wanting to do some damage: break things, throw things, drive into a wall or off a cliff. I don’t see how any of these things would help, but it’s what I feel like doing.
I want my filters back.
.
Saturday, April 18, 2009
Slash, Burn and Poison
Slash, Poison and Burn. I remember this phrase describing cancer treatment from my earlier bout with cancer in 1996. Cut the tumor out, poison any remaining cancer cells with chemo and then radiate the tumor site “just to be sure”. Of course all this is harming healthy cells right along with the cancer cells so it’s no wonder it’s exhausting and painful. It steals a chunk of your life. Some say it’s a year and others say more. I say more since I still have painful neuropathy in my feet from treatment 13 years ago.
Now I will be doing the whole thing all over again. Thursday, April 16th, we saw Dr. Cho at the Willamette Valley Cancer Center. He’s a terrific guy--patient and concerned and willing to answer any and all questions. The bottom line is that although my cancer is probably only stage 2, maybe even a high stage 1, it is Type 3 which is the most aggressive cancer. Because of that, surgery and radiation will not be enough even if I had a mastectomy and even if the lymph nodes are clean. So the plan will be surgery, chemo and then radiation. Slash, poison and burn.
I can’t help but wonder if it is worth it. What am I trading this harsh course of treatment for? If it gives me an extra few years and those years are of poor quality, it seems like a bad trade. But then the question is what would I not do?
Of course I want the tumor out of my body. So the surgery is necessary. The radiation makes sense because it specifically targets the area where the cancer started and grew. It’s a tolerable treatment. Six and a half weeks of daily radiation of the full breast area with a booster at the end targeting the specific area of the tumor. That’s going to be tiring and tedious; tying up every single week day for a month and a half. But it’s not painful except for maybe the initial mapping and tattoos. So I get to read, sleep a lot and watch tv. Not exactly the worst way to spend most of my summer. Not the best by a long shot, but not the worst.
So it comes down to the chemo. Just thinking about it makes my stomach queasy. That stuff takes me to absolute rock bottom. All the vomiting until I’m beyond empty and my stomach continues to try to reject the poison. I remember sleeping on the bathroom floor with a towel for a pillow so I can be close to the toilet when the next wave hits. Maybe it was passing out rather than sleeping but the thing is that when it is too much to get up and get back in bed, it’s bad.
I already know there are some chemos that are eliminated for me by the fact that my tumor is Triple negative. Tamoxifen is out and several others according to Dr. Cho. We will meet again to talk about what might work for my type and stage after my surgery. Adriomycen is a definite possibility. Probably some sort of combination. In 1996, I had Adriomycen, Taxol and Cis-Platin in an 8 hour drip. Can I do it again? Is it worth it? Statistically, the advantage is not all that convincing.
I think that’s a decision I’ll have to defer for now.
.
Now I will be doing the whole thing all over again. Thursday, April 16th, we saw Dr. Cho at the Willamette Valley Cancer Center. He’s a terrific guy--patient and concerned and willing to answer any and all questions. The bottom line is that although my cancer is probably only stage 2, maybe even a high stage 1, it is Type 3 which is the most aggressive cancer. Because of that, surgery and radiation will not be enough even if I had a mastectomy and even if the lymph nodes are clean. So the plan will be surgery, chemo and then radiation. Slash, poison and burn.
I can’t help but wonder if it is worth it. What am I trading this harsh course of treatment for? If it gives me an extra few years and those years are of poor quality, it seems like a bad trade. But then the question is what would I not do?
Of course I want the tumor out of my body. So the surgery is necessary. The radiation makes sense because it specifically targets the area where the cancer started and grew. It’s a tolerable treatment. Six and a half weeks of daily radiation of the full breast area with a booster at the end targeting the specific area of the tumor. That’s going to be tiring and tedious; tying up every single week day for a month and a half. But it’s not painful except for maybe the initial mapping and tattoos. So I get to read, sleep a lot and watch tv. Not exactly the worst way to spend most of my summer. Not the best by a long shot, but not the worst.
So it comes down to the chemo. Just thinking about it makes my stomach queasy. That stuff takes me to absolute rock bottom. All the vomiting until I’m beyond empty and my stomach continues to try to reject the poison. I remember sleeping on the bathroom floor with a towel for a pillow so I can be close to the toilet when the next wave hits. Maybe it was passing out rather than sleeping but the thing is that when it is too much to get up and get back in bed, it’s bad.
I already know there are some chemos that are eliminated for me by the fact that my tumor is Triple negative. Tamoxifen is out and several others according to Dr. Cho. We will meet again to talk about what might work for my type and stage after my surgery. Adriomycen is a definite possibility. Probably some sort of combination. In 1996, I had Adriomycen, Taxol and Cis-Platin in an 8 hour drip. Can I do it again? Is it worth it? Statistically, the advantage is not all that convincing.
I think that’s a decision I’ll have to defer for now.
.
Tuesday, April 14, 2009
TMI
.
We saw the radiation oncologist today. Dr. Meredith Wendland is a lovely, intelligent and compassionate woman and I felt an instant connection with her. She spent far longer than I would have expected explaining options and procedures to us.
She told us that there is no reason I cannot tolerate more radiation therapy. The risks are slight. There is some small risk that the portion of the lung exposed to radiation could be damaged but it would not be significant in her estimation. Any tissue on my lower breast that was previously affected by radiation when they did the full abdominal radiation in 1996, could be at risk for scarring or tissue deterioration/necrosis. Again, that would be rare and treatable with surgery. All things considered, the benefits of eliminating any lingering cancer cells would outweigh the small risks connected with the radiation. The treatment would be daily for approximately six and a half weeks.
On the other hand, if I opt for a mastectomy and there is no indication of cancer in the lymph system, I would probably just have chemo therapy. If there is cancer in the lymph system, I would have the radiation and chemo. In that sense, it is definitely a good thing that we do not have to rule out radiation as an option. I may learn more about this when I see the medical oncologist on Thursday.
We learned two additional things that we did not know before. My cancer is a high grade 3 which means it is very aggressive and it is also triple negative. This refers to the hormone receptor test which shows whether the tissue has certain hormone receptors.
• Hormone receptor test: This test shows whether the tissue has certain hormone receptors. Tissue with these receptors needs hormones (estrogen or progesterone) to grow.
• HER2 test: This test shows whether the tissue has a protein called human epidermal growth factor receptor-2 (HER2) or the HER2/neu gene. Having too much protein or too many copies of the gene in the tissue may increase the chance that the breast cancer will come back after treatment.
SOURCE: The National Cancer Institute web site
It sounds like being negative might be a good thing but I am not sure if that is true. One thing they indicate is that Tamoxifen is not an option for me. Since my cancer is not fed by estrogen, the estrogen blocking effects of Tamoxifen do not offer any benefit.
All this doesn’t answer my basic question which is whether to have a lumpectomy or a mastectomy. There are so many factors to consider. Dr. Wendland says that the recurrence rate with a lumpectomy is slightly higher than with a mastectomy but the survival rate is almost identical. The more radical surgery does not necessarily increase survival although it may reduce recurrence somewhat.
The question then is how much insult can my body stand and which treatments are less painful and debilitating with the best long term outcome.
My daughter recommends that I sleep on it and listen for the answer that emerges in the morning. My husband says I already know the answer. The decision is inside me but I’m not ready to stop worrying about it.
I feel like a dog with a bone. I shake it and nudge around it; bury it and dig it back up again. I think I should put it away and see what it looks like tomorrow.
.
We saw the radiation oncologist today. Dr. Meredith Wendland is a lovely, intelligent and compassionate woman and I felt an instant connection with her. She spent far longer than I would have expected explaining options and procedures to us.
She told us that there is no reason I cannot tolerate more radiation therapy. The risks are slight. There is some small risk that the portion of the lung exposed to radiation could be damaged but it would not be significant in her estimation. Any tissue on my lower breast that was previously affected by radiation when they did the full abdominal radiation in 1996, could be at risk for scarring or tissue deterioration/necrosis. Again, that would be rare and treatable with surgery. All things considered, the benefits of eliminating any lingering cancer cells would outweigh the small risks connected with the radiation. The treatment would be daily for approximately six and a half weeks.
On the other hand, if I opt for a mastectomy and there is no indication of cancer in the lymph system, I would probably just have chemo therapy. If there is cancer in the lymph system, I would have the radiation and chemo. In that sense, it is definitely a good thing that we do not have to rule out radiation as an option. I may learn more about this when I see the medical oncologist on Thursday.
We learned two additional things that we did not know before. My cancer is a high grade 3 which means it is very aggressive and it is also triple negative. This refers to the hormone receptor test which shows whether the tissue has certain hormone receptors.
• Hormone receptor test: This test shows whether the tissue has certain hormone receptors. Tissue with these receptors needs hormones (estrogen or progesterone) to grow.
• HER2 test: This test shows whether the tissue has a protein called human epidermal growth factor receptor-2 (HER2) or the HER2/neu gene. Having too much protein or too many copies of the gene in the tissue may increase the chance that the breast cancer will come back after treatment.
SOURCE: The National Cancer Institute web site
It sounds like being negative might be a good thing but I am not sure if that is true. One thing they indicate is that Tamoxifen is not an option for me. Since my cancer is not fed by estrogen, the estrogen blocking effects of Tamoxifen do not offer any benefit.
All this doesn’t answer my basic question which is whether to have a lumpectomy or a mastectomy. There are so many factors to consider. Dr. Wendland says that the recurrence rate with a lumpectomy is slightly higher than with a mastectomy but the survival rate is almost identical. The more radical surgery does not necessarily increase survival although it may reduce recurrence somewhat.
The question then is how much insult can my body stand and which treatments are less painful and debilitating with the best long term outcome.
My daughter recommends that I sleep on it and listen for the answer that emerges in the morning. My husband says I already know the answer. The decision is inside me but I’m not ready to stop worrying about it.
I feel like a dog with a bone. I shake it and nudge around it; bury it and dig it back up again. I think I should put it away and see what it looks like tomorrow.
.
Monday, April 13, 2009
Gathering Wisdom
Forget the web. Women friends have more collective wisdom than any site you can find on the internet. I visited my therapist this morning and spent the weekend talking to friends and family. Here are some of the gems I gathered from my conversations:
Ultimately it’s my decision – not only what I do or don’t do but how I handle the whole thing: physically, emotionally, spiritually and mentally.
I can stick my head in the sand and play “poor me” or I can do things that will make the situation better. At least the parts that are within my control; and there are lots of them. Here are some of them:
Exercise
Pamper yourself
Do something you enjoy
Walk the dog
Use guided imagery
Meditate
Do yoga
Talk about it
Take a nap
Write, journal, blog
Be in the moment, noticing and relishing the ordinary
That is all good advice. I’m already blogging, that’s obvious. I walked the dog this morning and I went to my health club and worked out after my appointment with Diane this morning. Ha, and I took a nap this afternoon. I’m getting with the program.
Tomorrow we will meet my radiation oncologist and that may give us the answers we need about my potential for tolerating additional radiation.
Oh, the sun just came out. Time for another walk with Bailey.
.
Ultimately it’s my decision – not only what I do or don’t do but how I handle the whole thing: physically, emotionally, spiritually and mentally.
I can stick my head in the sand and play “poor me” or I can do things that will make the situation better. At least the parts that are within my control; and there are lots of them. Here are some of them:
Exercise
Pamper yourself
Do something you enjoy
Walk the dog
Use guided imagery
Meditate
Do yoga
Talk about it
Take a nap
Write, journal, blog
Be in the moment, noticing and relishing the ordinary
That is all good advice. I’m already blogging, that’s obvious. I walked the dog this morning and I went to my health club and worked out after my appointment with Diane this morning. Ha, and I took a nap this afternoon. I’m getting with the program.
Tomorrow we will meet my radiation oncologist and that may give us the answers we need about my potential for tolerating additional radiation.
Oh, the sun just came out. Time for another walk with Bailey.
.
Sunday, April 12, 2009
There is such a thing as too much information
As important as it is to be well informed, I’m beginning to think you can over research things. I just spent half an hour looking at pictures of women with lumpectomies, hysterectomies and breast reconstructions. Definitely not pretty pictures! If you want to look at pretty breasts, check out Playboy or Victoria’s Secret catalogs. It’s very stressful to think of having a boob whacked off but I didn’t expect that the reconstructed ones would be ugly too.
External factors, like how much radiation my body can tolerate, may end up making the decision for me and that may actually be a relief. I’m not sure I want to make the decision and then live with the results if I am not happy with them. A couple of my women friends have had double mastectomies with no reconstruction and say they have no regrets. Maybe getting rid of the cancer is a big enough relief that the superficial aspects of how your chest looks aren’t as important as we make it.
Some think that a mastectomy is more effective because there is less likelihood of a recurrence. Here’s what I read about that:
If breast cancer is detected in its earliest stage, treatment results in a 10-year survival rate (that is, percent of women still living) of more than 90%. Long-term survival is similar whether the woman chooses lumpectomy or mastectomy. The difference between the treatments is the risk of recurrence locally (in the breast or on the chest wall). The 20-year risk of local recurrence after mastectomy is 3%-5% compared to 15%-20% after lumpectomy and radiation.
Source: emedicinehealth.com
To me that sounds like an increase of 10% to 15% in the odds that you will have a recurrence with only a lumpectomy. Of course that is recurrence, not survival that they are talking about. But undergoing treatment again? That's not very appealing. Is that enough to swing my vote? Maybe.
.
External factors, like how much radiation my body can tolerate, may end up making the decision for me and that may actually be a relief. I’m not sure I want to make the decision and then live with the results if I am not happy with them. A couple of my women friends have had double mastectomies with no reconstruction and say they have no regrets. Maybe getting rid of the cancer is a big enough relief that the superficial aspects of how your chest looks aren’t as important as we make it.
Some think that a mastectomy is more effective because there is less likelihood of a recurrence. Here’s what I read about that:
If breast cancer is detected in its earliest stage, treatment results in a 10-year survival rate (that is, percent of women still living) of more than 90%. Long-term survival is similar whether the woman chooses lumpectomy or mastectomy. The difference between the treatments is the risk of recurrence locally (in the breast or on the chest wall). The 20-year risk of local recurrence after mastectomy is 3%-5% compared to 15%-20% after lumpectomy and radiation.
Source: emedicinehealth.com
To me that sounds like an increase of 10% to 15% in the odds that you will have a recurrence with only a lumpectomy. Of course that is recurrence, not survival that they are talking about. But undergoing treatment again? That's not very appealing. Is that enough to swing my vote? Maybe.
.
Saturday, April 11, 2009
More Waiting
“How can they just keep me waiting and waiting?” I asked Chuck yesterday. “That’s easy,” he replied, “They don’t have cancer.”
Fortunately, the waiting was rewarded at 1:10 pm yesterday. After Chuck and I had agreed that I would call them if we didn’t hear anything by 1:15! I have an appointment with a radiation oncologist on Tuesday (April 14th) and with a medical oncologist on Thursday (April 16th).
I called to schedule my surgery but of course had to leave a message. Just before 5pm I got a call back saying that earliest Dr. K could do my surgery was April 28th. Dr. Schauer didn’t have anything open before that date. So now I have to wait 18 more days before getting surgery. How is that possible? I wept with frustration. There is no one, NO ONE, available at ten minutes to five to talk to a distraught patient. I left a message for my Patient Navigator, Paula, and for the Social Worker at Willamette Valley Cancer Center. Both gone for the day. It is, after all, Friday and they have lives.
Do I settle for a lesser surgeon, assuming I can find one, who can do the surgery sooner or hang on in this awful suspension for eighteen more days? By Monday when I can actually do something about it (assuming that is even possible), it will be a mere sixteen days.
.
Fortunately, the waiting was rewarded at 1:10 pm yesterday. After Chuck and I had agreed that I would call them if we didn’t hear anything by 1:15! I have an appointment with a radiation oncologist on Tuesday (April 14th) and with a medical oncologist on Thursday (April 16th).
I called to schedule my surgery but of course had to leave a message. Just before 5pm I got a call back saying that earliest Dr. K could do my surgery was April 28th. Dr. Schauer didn’t have anything open before that date. So now I have to wait 18 more days before getting surgery. How is that possible? I wept with frustration. There is no one, NO ONE, available at ten minutes to five to talk to a distraught patient. I left a message for my Patient Navigator, Paula, and for the Social Worker at Willamette Valley Cancer Center. Both gone for the day. It is, after all, Friday and they have lives.
Do I settle for a lesser surgeon, assuming I can find one, who can do the surgery sooner or hang on in this awful suspension for eighteen more days? By Monday when I can actually do something about it (assuming that is even possible), it will be a mere sixteen days.
.
Friday, April 10, 2009
Hurry Up and Wait
We waited all day yesterday for a call from the Radiation Oncologist. I tried calling them but they won’t make an appointment until they receive a referral and they say they have not received Dr. Kollmorgan’s referral yet. I asked if there was a fax number where I could have my radiation records faxed if I could track them down. No, says Dana, they will take care of all of that. ARGHHH!
Not being one to wait, I searched through my old medical records. Yes, I do have my records from 1996. I also have copies of all my tax returns since 1958. There is a word for that, I know. Anyway, the outfit that did my radiation no longer exists, but there is a radiation place with a new name, address and phone number. I contacted their records department and was told they don’t keep records for over ten years. I left a message for the head of the records department, Jennifer. A short time later I got a call back from Jenny who tells me that the records indicate they do have a file on me and she has ordered it from storage. She should have it tomorrow so when the local radiation records office contacts her she can fax it to them. I wished for several minutes that I lived back in Olympia!
This is My MSN horoscope for today
Your mind is buzzing around like a bumblebee, dear Cancer, and you are apt to find that there is very little you can do to slow it down. Make sure you link compassion into the chain that is working to hold everything together. Also be sure that you don't become a victim of your thoughts by losing control over how you act, simply because the voice in your head has taken over completely.
Sometimes horoscopes get it just exactly right. It’s a little spooky and helps me ignore it when they get it exactly wrong. Is it ironic that my sign is Cancer? Maybe just a little bit.
.
Not being one to wait, I searched through my old medical records. Yes, I do have my records from 1996. I also have copies of all my tax returns since 1958. There is a word for that, I know. Anyway, the outfit that did my radiation no longer exists, but there is a radiation place with a new name, address and phone number. I contacted their records department and was told they don’t keep records for over ten years. I left a message for the head of the records department, Jennifer. A short time later I got a call back from Jenny who tells me that the records indicate they do have a file on me and she has ordered it from storage. She should have it tomorrow so when the local radiation records office contacts her she can fax it to them. I wished for several minutes that I lived back in Olympia!
This is My MSN horoscope for today
Your mind is buzzing around like a bumblebee, dear Cancer, and you are apt to find that there is very little you can do to slow it down. Make sure you link compassion into the chain that is working to hold everything together. Also be sure that you don't become a victim of your thoughts by losing control over how you act, simply because the voice in your head has taken over completely.
Sometimes horoscopes get it just exactly right. It’s a little spooky and helps me ignore it when they get it exactly wrong. Is it ironic that my sign is Cancer? Maybe just a little bit.
.
Wednesday, April 8, 2009
First contact with Dr. K
Today was my appointment with Dr. Kollmorgan and we didn’t come away with “The Plan” as I had hoped. We did meet with her after a prolonged wait in a tiny consultation room and our first impression, besides the wait, was very good. Considering the size of my tumor, a lumpectomy is the recommended course of action. That would be followed by radiation and then chemo if indicated by lymph node results, etc.
The question now is just how much radiation did I have when I was battling cancer in 1996? How will that affect current use of radiation? She didn’t have the answers for that and referred me to a radiation oncologist. I will have to meet with him/her and to determine if I am eligible for additional radiation or need to have a mastectomy followed by chemo.
So I can’t schedule surgery because we are not sure which surgery I will need. We will have to wait for answers from the radiation specialist and then go from there. It is frustrating to have to wait but better to know now and get the correct surgery than to find out later and have to have a second surgery or to opt for the mastectomy and find out later that the lumpectomy would have been a better option.
One good thing is that both of us like and trust Dr. Kollmorgan and that is a big step in the right direction.
.
The question now is just how much radiation did I have when I was battling cancer in 1996? How will that affect current use of radiation? She didn’t have the answers for that and referred me to a radiation oncologist. I will have to meet with him/her and to determine if I am eligible for additional radiation or need to have a mastectomy followed by chemo.
So I can’t schedule surgery because we are not sure which surgery I will need. We will have to wait for answers from the radiation specialist and then go from there. It is frustrating to have to wait but better to know now and get the correct surgery than to find out later and have to have a second surgery or to opt for the mastectomy and find out later that the lumpectomy would have been a better option.
One good thing is that both of us like and trust Dr. Kollmorgan and that is a big step in the right direction.
.
Tuesday, April 7, 2009
How Many Times A Day?
How Many times a day do you touch your breast? If you are like me, the answer is probably seldom or never. It had to have been a long time since I touched the particular spot where my lump has made its home. Yet here it is. Big as a walnut. How long did it take for it to get that big? Why did my ob-gyn oncologist miss it when she gave me a breast exam just a few weeks ago? Why after all this time of not knowing it was there do I find myself checking to see if it is still there?
My fingers know exactly where it is now. They go straight to it like the tongue exploring the place where a tooth once was. I check to see if it’s growing or changing. Is it more or less dense? Even if it disappears altogether, I will know it is because all the cancer cells leaked out of the pin prick holes left by the needle biopsies and even now they are spreading throughout my body. That is probably extremely unlikely and not how cancer spreads but the image persists. Those cells have been there for a long time but the difference is that now I know they are there.
Cancer can be so tricky and insidious. It can grow at a snail’s pace or run amok like a shipload of sailors set free after months at sea. I’m fairly sure mine would be of the running amok variety. Now I will have to imagine my tumor as a tight little brig holding those restless sailors inside until the surgeon can cut the nasty little bugger out with a full complement of sailor cells intact. Then they can run amok in a nice little petri dish in some lab. They won’t be feasting on me after all.
So the lesson here is this: Touch them, feel them, get to know then well. Examine your breasts as closely as you check out those crow’s feet around your eyes. Early detection is the best defense against breast cancer.
Now I’ll put my soapbox away for today.
.
My fingers know exactly where it is now. They go straight to it like the tongue exploring the place where a tooth once was. I check to see if it’s growing or changing. Is it more or less dense? Even if it disappears altogether, I will know it is because all the cancer cells leaked out of the pin prick holes left by the needle biopsies and even now they are spreading throughout my body. That is probably extremely unlikely and not how cancer spreads but the image persists. Those cells have been there for a long time but the difference is that now I know they are there.
Cancer can be so tricky and insidious. It can grow at a snail’s pace or run amok like a shipload of sailors set free after months at sea. I’m fairly sure mine would be of the running amok variety. Now I will have to imagine my tumor as a tight little brig holding those restless sailors inside until the surgeon can cut the nasty little bugger out with a full complement of sailor cells intact. Then they can run amok in a nice little petri dish in some lab. They won’t be feasting on me after all.
So the lesson here is this: Touch them, feel them, get to know then well. Examine your breasts as closely as you check out those crow’s feet around your eyes. Early detection is the best defense against breast cancer.
Now I’ll put my soapbox away for today.
.
Monday, April 6, 2009
Garden Therapy
Yesterday my dear friend Dale came out and we worked in the garden for a couple of hours. It was a glorious day full of the promise of spring. We quickly shed our sweatshirts and dug, planted and trimmed with great enjoyment. I used soil from my oldest compost pile and found it to be laced with beautiful fat earthworms. What a bonus! I expected the soil to be good but the worms were a wonderful surprise. These little soil engineers will keep working longer than the Energizer bunny. We were tired but satisfied when we shook the dirt from our gloves and shoes. Our labors were rewarded by lunch at our local Mexican restaurant. We deserved and enjoyed every calorie.
The weather forecast is for more glorious weather today so I will be outdoors getting strengthened by Mother Nature’s garden therapy. Anything seems possible in the garden. All the plants are bursting with energy, pushed by a spell of warm weather and sunshine, ready to bud, bloom and produce. They are eager to fling their beautiful bounty to the universe. How can I be discouraged or fearful when I sink my hands into the soil and see all that around me?
My network is active and beautiful messages continue to arrive in my in-box. They are eloquent, heart-warming and full of so much encouragement and support. I received this brief but powerful message from our friend Guram, half way around the world in the far away nation of Georgia:
Maintain high spirits and resolve. We are with you. We will see you soon in fine fettle. Much love, Guram
The weather forecast is for more glorious weather today so I will be outdoors getting strengthened by Mother Nature’s garden therapy. Anything seems possible in the garden. All the plants are bursting with energy, pushed by a spell of warm weather and sunshine, ready to bud, bloom and produce. They are eager to fling their beautiful bounty to the universe. How can I be discouraged or fearful when I sink my hands into the soil and see all that around me?
My network is active and beautiful messages continue to arrive in my in-box. They are eloquent, heart-warming and full of so much encouragement and support. I received this brief but powerful message from our friend Guram, half way around the world in the far away nation of Georgia:
Maintain high spirits and resolve. We are with you. We will see you soon in fine fettle. Much love, Guram
Saturday, April 4, 2009
Like a Pearl in a Gooey Oyster
My friend Helen P. wrote this to me in an e-mail. If this doesn’t cheer you up, nothing will! I’m copying with her permission.
Dear Edythe,
You are in our hearts like a pearl in a gooey oyster, like a five dollar bill in the back pocket of your jeans, like a primrose that pops up pinkly beside the path, like a butterscotch in the bottom of your purse when you need something sweet. You are a gift, an ordinary miracle, a friend of the heart. Let our love surround you and hold you up. We are there for you.
Dear Edythe,
You are in our hearts like a pearl in a gooey oyster, like a five dollar bill in the back pocket of your jeans, like a primrose that pops up pinkly beside the path, like a butterscotch in the bottom of your purse when you need something sweet. You are a gift, an ordinary miracle, a friend of the heart. Let our love surround you and hold you up. We are there for you.
Friday, April 3, 2009
Pre-TSD
In the morning I want nothing more than to pull the covers over my head and go back to pretending that breast cancer is just a bad dream and I can create a good dream to overlay it and make everything all better. But, no, I have a dog.
My dog Bailey must be fed and medicated on a regular schedule because she is diabetic and the consequences of ignoring that are too dire to describe. Suffice to say that if she is not fed and medicated on time she seems to have a near death experience that is much too scary to risk. Once she is fed and has had her insulin shot and eye drops, she MUST have a walk. A real walk. Not just a stroll up the block so that she can relieve herself. She must go all the way to the river and find just the right spot for her morning poop.
So I get up. I am not always happy to get up but once I am up and active things generally improve. The walk gets me going and lifts my spirits. I make my mental “to do” list for the day and we are both better for the experience. Not today.
Today it rained. That’s not unusual in Oregon and rarely disturbs our routine. The problem is that when we get back, Bailey is too wet to come in the house. I open the garage, drape my wet coat over a chair and leave her to dry off near the garage heater. I want to have my breakfast and read the paper. She wants in. She claws at the door and howls. She whimpers. She cries. Normally, I would dry her off and let her in but today her behavior made me furious. Instantly I decided I didn’t want a dog any more. I didn’t want to deal with her needs. I felt like howling and whimpering right back at her. Keeping up with Bailey’s routine has seen me through recovery from uterine cancer treatments, several surgeries, illnesses and depression. But today I didn’t want any of it.
My husband rescued her. He toweled her off and let her in and left me wondering what on earth had made me so angry. It was so out of proportion. I think I know all about anxiety and its various symptoms but, for me at least, anger has never been one of them. So this is a new variety of anxiety for me. I have even given it a name. Pre-TSD. I am experiencing pre-traumatic stress disorder. I feel better now that I have named it.
My dog Bailey must be fed and medicated on a regular schedule because she is diabetic and the consequences of ignoring that are too dire to describe. Suffice to say that if she is not fed and medicated on time she seems to have a near death experience that is much too scary to risk. Once she is fed and has had her insulin shot and eye drops, she MUST have a walk. A real walk. Not just a stroll up the block so that she can relieve herself. She must go all the way to the river and find just the right spot for her morning poop.
So I get up. I am not always happy to get up but once I am up and active things generally improve. The walk gets me going and lifts my spirits. I make my mental “to do” list for the day and we are both better for the experience. Not today.
Today it rained. That’s not unusual in Oregon and rarely disturbs our routine. The problem is that when we get back, Bailey is too wet to come in the house. I open the garage, drape my wet coat over a chair and leave her to dry off near the garage heater. I want to have my breakfast and read the paper. She wants in. She claws at the door and howls. She whimpers. She cries. Normally, I would dry her off and let her in but today her behavior made me furious. Instantly I decided I didn’t want a dog any more. I didn’t want to deal with her needs. I felt like howling and whimpering right back at her. Keeping up with Bailey’s routine has seen me through recovery from uterine cancer treatments, several surgeries, illnesses and depression. But today I didn’t want any of it.
My husband rescued her. He toweled her off and let her in and left me wondering what on earth had made me so angry. It was so out of proportion. I think I know all about anxiety and its various symptoms but, for me at least, anger has never been one of them. So this is a new variety of anxiety for me. I have even given it a name. Pre-TSD. I am experiencing pre-traumatic stress disorder. I feel better now that I have named it.
Wednesday, April 1, 2009
Visualizations
My friend LaVae reminds me that visualizations are an important part of treatment and recovery. As one goes through the various procedures, it is good to create an image of the cancer weakening and being destroyed. This is a very personal process and it should be an image that each individual can create and recall as they navigate their individual cancer journey.
I have decided that my image will be like the Verizon ads: a vast sea of individuals all there to back up your phone service. Only in my image they will be there to support me and help me defeat cancer. Each of my network of people will be working on my recovery by providing me with love and encouragement; saying prayers and putting me on their prayer chains; researching treatment options and doing whatever they can to ensure I get excellent reception and service every step of the way.
During my first bout with cancer in 1996, I envisioned the chemo as tough and feisty enforcement guys cleaning up the neighborhood and kicking out all the radical misfits who were actually weak little punks. These puny bad guys didn’t stand a chance against my chemo-cocktail fueled enforcers. They cleaned up the neighborhood and had radiation guys go in behind them to make sure not a misfit was left. They did a heck of a job and I may call on them again but for now I’m liking my vast sea of support people. “Can you hear me now?”
I have decided that my image will be like the Verizon ads: a vast sea of individuals all there to back up your phone service. Only in my image they will be there to support me and help me defeat cancer. Each of my network of people will be working on my recovery by providing me with love and encouragement; saying prayers and putting me on their prayer chains; researching treatment options and doing whatever they can to ensure I get excellent reception and service every step of the way.
During my first bout with cancer in 1996, I envisioned the chemo as tough and feisty enforcement guys cleaning up the neighborhood and kicking out all the radical misfits who were actually weak little punks. These puny bad guys didn’t stand a chance against my chemo-cocktail fueled enforcers. They cleaned up the neighborhood and had radiation guys go in behind them to make sure not a misfit was left. They did a heck of a job and I may call on them again but for now I’m liking my vast sea of support people. “Can you hear me now?”
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