Lesser of Two Evils? Gambling on Life
This past week I have paid $50 in co-pays just for the privilege of talking to a few specialists. Not even a blood draw in the mix.
I am about 6 weeks post-surgery and I have to make a decision on my next treatments. I thought I had that figured out and I thought it would be easy. As has been the case several times along this rocky road I have been on since August of last year, I was wrong.
Just a final update on my condition post-surgery: I am as recovered as I think I'm gonna be for the most part. The scars are healing (although they still look like angry red cuts) and the residual pain and sensitivity is minor. I have been completely off any pain meds for two weeks. The cosmetic appearance is actually very good (after the surgery I looked and felt like a carved up Thanksgiving turkey). Thumbs up.
So to catch you up on the past week, I met my radiologist on Thursday. He is a nice man, probably in his 50s or early 60s and the first guy I have let touch my breasts since the surgery (Little bit of humor goes a long way!). He explained how the radiation machines work. They basically are set at an angle to go in one side of the breast toward the top and out the other side at the bottom at a specific dose that is powerful enough to disrupt any new cell growth, but not powerful enough to say, cause my breast to die and fall off. The side effects are soreness, tenderness and swelling which will turn to firmness and some shrinkage; redness like a sunburn with possible peeling (they have creams for that), possible darkening in skin color of the breast (he says that will not be very noticeable), and fatigue which will most likely be the worst of the side effects as far as its impact on my life. Another thing I learned which worried me a bit is I may lose about 5 percent of my right lung to the treatment as the radiation path will graze across a small part of my lung and may damage it enough to be permanent. He assured me as I am not a marathon runner, I will never even notice it.
The course of treatment is 25 full entire breast radiation treatments plus 5 more at the end targeting just the tumor area. That's a total of 30 treatments, usually given over the course of 6 weeks. Normally, they're done every weekday, 5 days a week with weekends off. The treatments only take about 10 minutes but you are there an average of about 30 minutes each time. My treatment will probably take about 7 weeks because of my travel schedule and being out of town frequently.
This treatment is designed for one thing and one thing only: to significantly reduce the chance of the cancer coming back in the same breast. Okay, it's time for the statistics portion of the class...
My cancer has about a 20 to 25% chance of coming back. And this means coming back in the same breast, the other breast or even more terrifying, anywhere in my body. I was told this by both doctors. In other words, if I did nothing but remove the known tumor surgically, odds say I have a 75% chance of nothing else happening even without any further treatments. I'd be done and would have beat cancer. However the 25% risk factor is a big one for reasons I will get into later in this blog entry.
What the radiation does is reduce the risk of it coming back in the same breast (which is the most likely recurrence spot) from 25% to 4%. Those are pretty good odds and the day I made the (easy) decision to opt for the lumpectomy (or partial mastectomy to use medical terms) rather than the full mastectomy, I had already decided to do the radiation. The statistic regarding mastectomy vs. lumpectomy plus radiation having the same 5-year survival rate is well-known.
But that's not the decision I'm talking about.
Cue the Monday visit with the oncologist. I was actually feeling a bit hostile about the whole thing and ready to be on the attack/defensive as needed. My position on chemotherapy has not waivered much and I was hoping the doctor was gonna be a money-grubbing jerk and I would feel justified. That didn't happen. She was a very nice woman with a warm, compassionate demeanor and very patient with all the questions I asked (I brought 3 pages of questions ... no kidding) and laid it out for me always respectful that this would be my decision and she would not try to browbeat me into anything. Damn it. I liked her.
Back to the statistics part ...
So we already determined that I have a 25% chance of the cancer coming back. The radiologist said he can drop the odds to 4% BUT ONLY IN THE RIGHT BREAST. The 25% chance also applies to the cancer coming back elsewhere.
There are no prescriptions like Tamixofen, Herceptin or anything else I can take that are prescribed as a systematic approach to keeping the cancer from returning in that lucky 80% of breast cancer patients who can take them. I have triple negative, basal-like breast cancer and it is a nasty one that laughs in the face of those kind of treatments as it doesn't care. WE HAVE NOT FOUND A PILL TO TREAT THIS FORM OF BREAST CANCER. There is only chemo to treat systematically.
BUT WAIT ... didn't all the doctors so far tell me I'm currently cancer-free? Can't we run a full body CAT or PET or MRI to check everywhere as a safeguard? Weren't my lymph nodes cancer-free? How could it have spread/be spreading if it's not even in the lymph nodes??
Here are the things I learned about all that. Yes, my closest and most likely lymph nodes were checked and they were cancer-free. No, there is no evidence of what they call vascular lymphatic invasion. But there is always the chance of a very tiny, microscopic cancer cell or two is floating around in my bloodstream that could attach at any point anywhere, take up residence and start building a new colony. AND OUR CURRENT MEDICAL TECHNOLOGY WITH ALL THE NEW DIAGNOSTIC MARVELS CAN'T SEE IT. At least, until it forms a new tumor at least 0.5 cm in size. You starting to get an idea of why we haven't yet cured cancer?
So within that 25% chance of the cancer returning, this is part of that equation. Now let's get into more odds. So what does doing 5 to 6 months of chemotherapy with horrendous side effects buy me? Studies say that I can reduce my odds from 25% down an extra 9% to about 16%. It's only 9 PERCENT difference! It's obviously not as good as the radiation odds. This is because none of this is a 100% cure. Chemo doesn't even work on everybody and what's worse, in my case there is no way to measure if it is doing any good except maybe in the final outcome speaking for itself. Even that doesn't tell me if going through 6 months of hell was worth it because what if I was in the 75% all along? In addition, there are no guarantees even if I did all three (surgery, chemotherapy and radiation) exactly as proposed that I would not have the cancer return. I would still have a 4% chance of the cancer returning in the same breast and a 16% chance of it recurring elsewhere.
The oncologist repeated several times that this would be an easy decision if only we knew which of the patients were in the 75% category and which were in the 25% category. So it's a gamble ... either way. A risk vs. benefits assessment. Which is the lesser of two evils? Is this a question about the last presidential election?
Nope, that's already been decided. So before I go any further, let's talk about what a chemo regiment looks like. I am not gonna name the actual drugs here, but there are three or four involved in the whole regiment and I will hit all the cumulative side effects. I would do a combination of two of them once a week, every two weeks for a total of four treatments over two months. Then, they would switch drugs and do 12 weeks of once a week. That adds up to somewhere around 5 to 6 months. They are administered by IV and I hear that, in itself, is uncomfortable because they are highly toxic. Your body is given very little time to recover before the next dose. It really is just like putting poison directly in your veins and that freaks me the fuck out. The most common side effects from the entire regiment are: Nausea, vomiting, diarrhea, neuropathy, chemobrain, numbness and tingling in the extremities, reduced white and red blood counts with an extreme vulnerability to everything due to compromised immune system, complete hair loss, extreme fatigue sometimes preventing a person from getting out of bed for days, weight loss (this is the only one I like), and some heart and liver damage. Most of these go away within a year after stopping treatment but some do not. Does the cure sound worse than the disease? Maybe.
In the overall assessment and weighing of factors: I am a Stage One. That single factor trumps everything else including the fact that I have a grade 3, highly aggressive, triple-neg cancer. That, and the lack of lymph node involvement, puts me more likely in the 75% category. I think if there were even one sign of spreading I would be all in for the chemo. That would be a big risk factor. What's frustrating is that if my cancer had been of a lower grade and type and aggressiveness, we wouldn't even be talking about this. Doctors normally don't recommend chemo for stage 1 or even 2 breast cancers.
So ... here's the decision I have to make. Whatever I do, I need to do it soon. Waiting in cancer treatment is usually a bad idea. Since chemo is the next step (done before radiation), I have to decide on what is my treatment course will be. I either need to start chemo or start radiation in February. I have always said I would do the chemo if the cancer returns and of course, I would. But for now, do I use chemo as a back-up, only if needed? Do I go ahead and start radiation and play the wait and see game? Or do I buy that second insurance policy against the cancer coming back even though it seems so high-priced? The biggest single risk factor is if the cancer does come back, it could do so in a much worse area: for example, your brain or your lungs. And I could go from a Stage 1 breast cancer to a Stage 4 other cancer just like that (snaps fingers). But that could happen even if I had the chemo. Remember, there's still that 16% no matter what. This is what happens in most patients that don't survive breast cancer. All patients who die from breast cancer die from metastasis of that cancer either initially because the diagnosis came too late or because the cancer came back and had spread. They are among the unlucky 25%. And that's not to say that everyone in that 25% dies ... some can be successfully treated and survive. But the more courses of treatment and the more spreading and the more recurrence drop the odds of survival.
And speaking of cost, I haven't even gotten into the problems with not being able to work for 6 months and having no way to pay my bills if I do chemo. I will have my medical insurance and AFLAC cancer policy in effect, but that pays only a part of the medical bills and the chemo stipend is only $350 per week which is $1400 per month. My bills are about $2500 per month. And that's before the out-of-pocket medical expenses which have been substantial these past few months. I was able to take off the time for the surgery only because the AFLAC policy paid a one-time $5000 benefit upon first diagnosis. I used that to catch up on all the excessive medical bills from 2017, too. My out-of-pocket medical and dental expenses ran about $8000 last year.
So I would really appreciate any input or thoughts on this situation that anyone has. I am open to advice and I have made the point of surrounding myself with smart people with sound logic and great ideas. I need you guys! Also, along those lines, I would ask that you pray for complete remission and healing and for the cancer to be gone for good! Demons begone! Hallelujah!
I am about 6 weeks post-surgery and I have to make a decision on my next treatments. I thought I had that figured out and I thought it would be easy. As has been the case several times along this rocky road I have been on since August of last year, I was wrong.
Just a final update on my condition post-surgery: I am as recovered as I think I'm gonna be for the most part. The scars are healing (although they still look like angry red cuts) and the residual pain and sensitivity is minor. I have been completely off any pain meds for two weeks. The cosmetic appearance is actually very good (after the surgery I looked and felt like a carved up Thanksgiving turkey). Thumbs up.
So to catch you up on the past week, I met my radiologist on Thursday. He is a nice man, probably in his 50s or early 60s and the first guy I have let touch my breasts since the surgery (Little bit of humor goes a long way!). He explained how the radiation machines work. They basically are set at an angle to go in one side of the breast toward the top and out the other side at the bottom at a specific dose that is powerful enough to disrupt any new cell growth, but not powerful enough to say, cause my breast to die and fall off. The side effects are soreness, tenderness and swelling which will turn to firmness and some shrinkage; redness like a sunburn with possible peeling (they have creams for that), possible darkening in skin color of the breast (he says that will not be very noticeable), and fatigue which will most likely be the worst of the side effects as far as its impact on my life. Another thing I learned which worried me a bit is I may lose about 5 percent of my right lung to the treatment as the radiation path will graze across a small part of my lung and may damage it enough to be permanent. He assured me as I am not a marathon runner, I will never even notice it.
The course of treatment is 25 full entire breast radiation treatments plus 5 more at the end targeting just the tumor area. That's a total of 30 treatments, usually given over the course of 6 weeks. Normally, they're done every weekday, 5 days a week with weekends off. The treatments only take about 10 minutes but you are there an average of about 30 minutes each time. My treatment will probably take about 7 weeks because of my travel schedule and being out of town frequently.
This treatment is designed for one thing and one thing only: to significantly reduce the chance of the cancer coming back in the same breast. Okay, it's time for the statistics portion of the class...
My cancer has about a 20 to 25% chance of coming back. And this means coming back in the same breast, the other breast or even more terrifying, anywhere in my body. I was told this by both doctors. In other words, if I did nothing but remove the known tumor surgically, odds say I have a 75% chance of nothing else happening even without any further treatments. I'd be done and would have beat cancer. However the 25% risk factor is a big one for reasons I will get into later in this blog entry.
What the radiation does is reduce the risk of it coming back in the same breast (which is the most likely recurrence spot) from 25% to 4%. Those are pretty good odds and the day I made the (easy) decision to opt for the lumpectomy (or partial mastectomy to use medical terms) rather than the full mastectomy, I had already decided to do the radiation. The statistic regarding mastectomy vs. lumpectomy plus radiation having the same 5-year survival rate is well-known.
But that's not the decision I'm talking about.
Cue the Monday visit with the oncologist. I was actually feeling a bit hostile about the whole thing and ready to be on the attack/defensive as needed. My position on chemotherapy has not waivered much and I was hoping the doctor was gonna be a money-grubbing jerk and I would feel justified. That didn't happen. She was a very nice woman with a warm, compassionate demeanor and very patient with all the questions I asked (I brought 3 pages of questions ... no kidding) and laid it out for me always respectful that this would be my decision and she would not try to browbeat me into anything. Damn it. I liked her.
Back to the statistics part ...
So we already determined that I have a 25% chance of the cancer coming back. The radiologist said he can drop the odds to 4% BUT ONLY IN THE RIGHT BREAST. The 25% chance also applies to the cancer coming back elsewhere.
There are no prescriptions like Tamixofen, Herceptin or anything else I can take that are prescribed as a systematic approach to keeping the cancer from returning in that lucky 80% of breast cancer patients who can take them. I have triple negative, basal-like breast cancer and it is a nasty one that laughs in the face of those kind of treatments as it doesn't care. WE HAVE NOT FOUND A PILL TO TREAT THIS FORM OF BREAST CANCER. There is only chemo to treat systematically.
BUT WAIT ... didn't all the doctors so far tell me I'm currently cancer-free? Can't we run a full body CAT or PET or MRI to check everywhere as a safeguard? Weren't my lymph nodes cancer-free? How could it have spread/be spreading if it's not even in the lymph nodes??
Here are the things I learned about all that. Yes, my closest and most likely lymph nodes were checked and they were cancer-free. No, there is no evidence of what they call vascular lymphatic invasion. But there is always the chance of a very tiny, microscopic cancer cell or two is floating around in my bloodstream that could attach at any point anywhere, take up residence and start building a new colony. AND OUR CURRENT MEDICAL TECHNOLOGY WITH ALL THE NEW DIAGNOSTIC MARVELS CAN'T SEE IT. At least, until it forms a new tumor at least 0.5 cm in size. You starting to get an idea of why we haven't yet cured cancer?
So within that 25% chance of the cancer returning, this is part of that equation. Now let's get into more odds. So what does doing 5 to 6 months of chemotherapy with horrendous side effects buy me? Studies say that I can reduce my odds from 25% down an extra 9% to about 16%. It's only 9 PERCENT difference! It's obviously not as good as the radiation odds. This is because none of this is a 100% cure. Chemo doesn't even work on everybody and what's worse, in my case there is no way to measure if it is doing any good except maybe in the final outcome speaking for itself. Even that doesn't tell me if going through 6 months of hell was worth it because what if I was in the 75% all along? In addition, there are no guarantees even if I did all three (surgery, chemotherapy and radiation) exactly as proposed that I would not have the cancer return. I would still have a 4% chance of the cancer returning in the same breast and a 16% chance of it recurring elsewhere.
The oncologist repeated several times that this would be an easy decision if only we knew which of the patients were in the 75% category and which were in the 25% category. So it's a gamble ... either way. A risk vs. benefits assessment. Which is the lesser of two evils? Is this a question about the last presidential election?
Nope, that's already been decided. So before I go any further, let's talk about what a chemo regiment looks like. I am not gonna name the actual drugs here, but there are three or four involved in the whole regiment and I will hit all the cumulative side effects. I would do a combination of two of them once a week, every two weeks for a total of four treatments over two months. Then, they would switch drugs and do 12 weeks of once a week. That adds up to somewhere around 5 to 6 months. They are administered by IV and I hear that, in itself, is uncomfortable because they are highly toxic. Your body is given very little time to recover before the next dose. It really is just like putting poison directly in your veins and that freaks me the fuck out. The most common side effects from the entire regiment are: Nausea, vomiting, diarrhea, neuropathy, chemobrain, numbness and tingling in the extremities, reduced white and red blood counts with an extreme vulnerability to everything due to compromised immune system, complete hair loss, extreme fatigue sometimes preventing a person from getting out of bed for days, weight loss (this is the only one I like), and some heart and liver damage. Most of these go away within a year after stopping treatment but some do not. Does the cure sound worse than the disease? Maybe.
In the overall assessment and weighing of factors: I am a Stage One. That single factor trumps everything else including the fact that I have a grade 3, highly aggressive, triple-neg cancer. That, and the lack of lymph node involvement, puts me more likely in the 75% category. I think if there were even one sign of spreading I would be all in for the chemo. That would be a big risk factor. What's frustrating is that if my cancer had been of a lower grade and type and aggressiveness, we wouldn't even be talking about this. Doctors normally don't recommend chemo for stage 1 or even 2 breast cancers.
So ... here's the decision I have to make. Whatever I do, I need to do it soon. Waiting in cancer treatment is usually a bad idea. Since chemo is the next step (done before radiation), I have to decide on what is my treatment course will be. I either need to start chemo or start radiation in February. I have always said I would do the chemo if the cancer returns and of course, I would. But for now, do I use chemo as a back-up, only if needed? Do I go ahead and start radiation and play the wait and see game? Or do I buy that second insurance policy against the cancer coming back even though it seems so high-priced? The biggest single risk factor is if the cancer does come back, it could do so in a much worse area: for example, your brain or your lungs. And I could go from a Stage 1 breast cancer to a Stage 4 other cancer just like that (snaps fingers). But that could happen even if I had the chemo. Remember, there's still that 16% no matter what. This is what happens in most patients that don't survive breast cancer. All patients who die from breast cancer die from metastasis of that cancer either initially because the diagnosis came too late or because the cancer came back and had spread. They are among the unlucky 25%. And that's not to say that everyone in that 25% dies ... some can be successfully treated and survive. But the more courses of treatment and the more spreading and the more recurrence drop the odds of survival.
And speaking of cost, I haven't even gotten into the problems with not being able to work for 6 months and having no way to pay my bills if I do chemo. I will have my medical insurance and AFLAC cancer policy in effect, but that pays only a part of the medical bills and the chemo stipend is only $350 per week which is $1400 per month. My bills are about $2500 per month. And that's before the out-of-pocket medical expenses which have been substantial these past few months. I was able to take off the time for the surgery only because the AFLAC policy paid a one-time $5000 benefit upon first diagnosis. I used that to catch up on all the excessive medical bills from 2017, too. My out-of-pocket medical and dental expenses ran about $8000 last year.
So I would really appreciate any input or thoughts on this situation that anyone has. I am open to advice and I have made the point of surrounding myself with smart people with sound logic and great ideas. I need you guys! Also, along those lines, I would ask that you pray for complete remission and healing and for the cancer to be gone for good! Demons begone! Hallelujah!
Comments
Post a Comment