Defiantly Alive

Started by anonymous, July 24, 2015
17 replies for this topic
anonymous

N/A
N/A
Posted on
July 24, 2015
 Let's get this straight. I have stage 4 breast cancer. I know what that means. The cancer has spread beyond my breast and it is incurable. I know it can roar back at any time. And I know that the cancer will eventually kill me.

Here's the other thing we need to get straight. I know I'm in for a long haul. I know that the cancer learns the treatments I’m given, and I’ll need to switch treatments again and again. I know that there are many people who become debilitated by this disease and have to stop working and focus entirely on nothing but fighting the cancer. I know all the bad news. And the bad news that I don't know, I don't want to know.

But here’s the real deal, I want to live. I want to color my hair purple, or any other shade I please. I want to focus on days I’m not crippled by exhaustion. I want to be able to enjoy walking around the city, while I can. I want to travel to Toledo or London or Austin or even Bermuda. Yeah, Bermuda. I want to sit in my garden, read a good mystery, and not think about cancer.

I want to live, and I will do anything I can in order to stay alive.

This brings me to the latest in breast cancer news. In July, the Wall Street Journal (WSJ) published an article with the headline Defying Doctors: More Women With Breast Cancer Choose Double Mastectomies. Articles about mastectomies are not uncommon. In fact, these articles seemed to have proliferated after Angelia Jolie chose to have a prophylactic double mastectomy after testing positive for the BRCA gene mutation. But what struck me about this headline was the use of the word "defying.” The impression left by the use of this word? Doctors are the parents, and their patients are their defiant children.  Who do patients think they are? Adults? Independent decision makers? How dare they?

Certainly, when I asked my oncologist about a mastectomy, she worked hard to dissuade me. I am part of a small group diagnosed with stage 4 breast cancer from the start (most breast cancer patients are diagnosed at an earlier stage, although 30 percent of all diagnosed with breast cancer will eventually move on to stage 4). My oncologist was worried that if I had the surgery, and an infection flared, I would not be able to receive possibly-needed systemic chemo. She questioned why I wanted such a radical procedure, telling me that, at this point, the focus was to keep the cancer at bay elsewhere in my body. She stressed that the likelihood of another primary cancer appearing in my breasts was very low.  

All valid points. All reasonably stated. But my reply to her final point was fast and adamant.

"Even if it's rare, if another primary developed in my breasts, that would piss me off."

That gave my oncologist pause. In the end, though I trust my oncologist’s extensive knowledge, the decision was ultimately mine to make.

And this respect of the patient as decision maker is apparently part of the trend in mastectomies. Deanna Attai, president of the American Society of Breast Surgeons, noted in the above WSJ article, “We are no longer practicing medicine in a paternalistic fashion, and at the end of the day, it is the patient’s decision. Attai continued by saying that since medicine can’t guarantee cancer won’t develop in the healthy breast, she is obligated to defer to the patient’s wishes. In the same WSJ piece, Clifford Huddis from Memorial Sloan Kettering Cancer Center observed, "The patriarchal allegation has moved 180 degrees. It used to be, ‘How dare you say my breast isn’t important and make me lose a breast to mastectomy?’ Now, decades later, the allegation is, ‘Why do you care so much? It is my breast.'" And he is right.  It is my breast. And it is my life.

Certainly, I have my emotional reasons for choosing a bilateral mastectomy at stage 4. But ultimately, I made the decision based on reviewing the medical literature. That’s right. I reviewed the medical literature, thanks to PubMed.gov and other authoritative medical sources.

In my review of the literature, I found a 2008 study published in the Annals of Surgery, Surgery Improves Survival in Stage IV Breast Cancer that indicated, “Surgery was associated with better survival outcome, even after controlling important variables such as age, race, ER and PR expression, number of metastatic sites, and presence of visceral metastases." Of the 242 patients observed and followed in this study, 188 had had a mastectomy, and they tended to do better overall.

The 2008 study goes on to state, "From a basic biology point of view, a number of studies have shown that some tumors, including breast carcinoma, can induce an immunosuppressive state in the host. By reducing the primary tumor burden in stage IV breast cancer patients, it can be hypothesized that the immune response may at least partially recover and allow the body to assist in controlling metastatic cells."

But then in 2013, at the San Antonio Breast Cancer Symposium, another study, this one from India, was announced showing that patients who received no surgical intervention had no worse survival than those who underwent mastectomy. The release of this study seemed to come out of the 2013 Breast Cancer Symposium as a final decision. It was proven definitively. There was no reason to perform mastectomies on stage 4 breast cancer patients except for palliative reasons. Yet this was just one study, and it had the exact opposite findings from the 2008 study.  Which study was correct? How are patients to decide? Typically, the goal of scientific research is to replicate findings multiple times in order to validate results, arming medical doctors with clear, evidence-based guidelines for treatment decisions. How could just a few studies on the effect of mastectomies on stage 4 breast cancer patients be the final word? There needs to be further study.

But more research of mastectomies in metastatic breast cancer patients is unlikely to happen. Metastatic breast cancer-focused research made up only 7 percent of the $15 billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. And the little metastatic research that is funded is very basic.

This means that metastatic breast cancer patients often become a clinical trial of one, the findings not aggregated, not published to the world. Oncologists treating metastatic breast cancer patients do the best they can with comparatively small amounts of research data in this field. Treatment can become a bit of a guessing game, oncologists doing what they can to keep patients alive and living relatively well.

So how was I to make such a grave medical decision for myself, considering the limited resources available?  In reviewing the results of the 2008 study, I brought together this study’s results with the findings of other studies regarding tumor load and single metastases. Just like my oncologist, I worked with the information I had, and decided that decreasing the possible tumor load in my body might give me a better shot.  A shot at living longer. And that is my goal, to live longer.

I made an adult decision based on available research data in metastatic breast cancer, and based on the fact that I was disease stable and in relative good health. I requested a bilateral mastectomy. I knew it would be tough surgery, but my life is worth it. I feel like saying that with pointed pauses.

My ... life ... is ... worth ... it.

Luckily, I had chosen an oncologist who respected my choice. After hesitation, and once my cancer was clearly stable, in August 2012 she agreed to sign off on the surgery. I am grateful for her respect and her extensive medical skills.

Dr. Bernie Siegel, the author of Love, Medicine and Miracles, observed in his work with cancer patients that a group he calls the "Exceptional Patient" had the highest survival rate of all the patients he treated. The Exceptional Patients insisted on being part of treatment decisions, and were perceived as noisy and demanding. Another way to refer to these traits? Defiant.

If the medical community views my choice of a bilateral mastectomy at stage 4 as defiant, so be it. I will continue to choose medical teams who work with me and respect that treatment decisions are ultimately mine to make. I will continue to respect my medical team’s expertise — I did choose them for their skill, after all. I will continue to be demanding about my care. And I will make lots of noise. Call that defiant. Call that difficult. I call that defiantly alive.
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Susan Fariss

Member
0 Replies
Posted on
July 24, 2015
 Let's get this straight. I have stage 4 breast cancer. I know what that means. The cancer has spread beyond my breast and it is incurable. I know it can roar back at any time. And I know that the cancer will eventually kill me.

Here's the other thing we need to get straight. I know I'm in for a long haul. I know that the cancer learns the treatments I’m given, and I’ll need to switch treatments again and again. I know that there are many people who become debilitated by this disease and have to stop working and focus entirely on nothing but fighting the cancer. I know all the bad news. And the bad news that I don't know, I don't want to know.

But here’s the real deal, I want to live. I want to color my hair purple, or any other shade I please. I want to focus on days I’m not crippled by exhaustion. I want to be able to enjoy walking around the city, while I can. I want to travel to Toledo or London or Austin or even Bermuda. Yeah, Bermuda. I want to sit in my garden, read a good mystery, and not think about cancer.

I want to live, and I will do anything I can in order to stay alive.

This brings me to the latest in breast cancer news. In July, the Wall Street Journal (WSJ) published an article with the headline Defying Doctors: More Women With Breast Cancer Choose Double Mastectomies. Articles about mastectomies are not uncommon. In fact, these articles seemed to have proliferated after Angelia Jolie chose to have a prophylactic double mastectomy after testing positive for the BRCA gene mutation. But what struck me about this headline was the use of the word "defying.” The impression left by the use of this word? Doctors are the parents, and their patients are their defiant children.  Who do patients think they are? Adults? Independent decision makers? How dare they?

Certainly, when I asked my oncologist about a mastectomy, she worked hard to dissuade me. I am part of a small group diagnosed with stage 4 breast cancer from the start (most breast cancer patients are diagnosed at an earlier stage, although 30 percent of all diagnosed with breast cancer will eventually move on to stage 4). My oncologist was worried that if I had the surgery, and an infection flared, I would not be able to receive possibly-needed systemic chemo. She questioned why I wanted such a radical procedure, telling me that, at this point, the focus was to keep the cancer at bay elsewhere in my body. She stressed that the likelihood of another primary cancer appearing in my breasts was very low.  

All valid points. All reasonably stated. But my reply to her final point was fast and adamant.

"Even if it's rare, if another primary developed in my breasts, that would piss me off."

That gave my oncologist pause. In the end, though I trust my oncologist’s extensive knowledge, the decision was ultimately mine to make.

And this respect of the patient as decision maker is apparently part of the trend in mastectomies. Deanna Attai, president of the American Society of Breast Surgeons, noted in the above WSJ article, “We are no longer practicing medicine in a paternalistic fashion, and at the end of the day, it is the patient’s decision. Attai continued by saying that since medicine can’t guarantee cancer won’t develop in the healthy breast, she is obligated to defer to the patient’s wishes. In the same WSJ piece, Clifford Huddis from Memorial Sloan Kettering Cancer Center observed, "The patriarchal allegation has moved 180 degrees. It used to be, ‘How dare you say my breast isn’t important and make me lose a breast to mastectomy?’ Now, decades later, the allegation is, ‘Why do you care so much? It is my breast.'" And he is right.  It is my breast. And it is my life.

Certainly, I have my emotional reasons for choosing a bilateral mastectomy at stage 4. But ultimately, I made the decision based on reviewing the medical literature. That’s right. I reviewed the medical literature, thanks to PubMed.gov and other authoritative medical sources.

In my review of the literature, I found a 2008 study published in the Annals of Surgery, Surgery Improves Survival in Stage IV Breast Cancer that indicated, “Surgery was associated with better survival outcome, even after controlling important variables such as age, race, ER and PR expression, number of metastatic sites, and presence of visceral metastases." Of the 242 patients observed and followed in this study, 188 had had a mastectomy, and they tended to do better overall.

The 2008 study goes on to state, "From a basic biology point of view, a number of studies have shown that some tumors, including breast carcinoma, can induce an immunosuppressive state in the host. By reducing the primary tumor burden in stage IV breast cancer patients, it can be hypothesized that the immune response may at least partially recover and allow the body to assist in controlling metastatic cells."

But then in 2013, at the San Antonio Breast Cancer Symposium, another study, this one from India, was announced showing that patients who received no surgical intervention had no worse survival than those who underwent mastectomy. The release of this study seemed to come out of the 2013 Breast Cancer Symposium as a final decision. It was proven definitively. There was no reason to perform mastectomies on stage 4 breast cancer patients except for palliative reasons. Yet this was just one study, and it had the exact opposite findings from the 2008 study.  Which study was correct? How are patients to decide? Typically, the goal of scientific research is to replicate findings multiple times in order to validate results, arming medical doctors with clear, evidence-based guidelines for treatment decisions. How could just a few studies on the effect of mastectomies on stage 4 breast cancer patients be the final word? There needs to be further study.

But more research of mastectomies in metastatic breast cancer patients is unlikely to happen. Metastatic breast cancer-focused research made up only 7 percent of the $15 billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. And the little metastatic research that is funded is very basic.

This means that metastatic breast cancer patients often become a clinical trial of one, the findings not aggregated, not published to the world. Oncologists treating metastatic breast cancer patients do the best they can with comparatively small amounts of research data in this field. Treatment can become a bit of a guessing game, oncologists doing what they can to keep patients alive and living relatively well.

So how was I to make such a grave medical decision for myself, considering the limited resources available?  In reviewing the results of the 2008 study, I brought together this study’s results with the findings of other studies regarding tumor load and single metastases. Just like my oncologist, I worked with the information I had, and decided that decreasing the possible tumor load in my body might give me a better shot.  A shot at living longer. And that is my goal, to live longer.

I made an adult decision based on available research data in metastatic breast cancer, and based on the fact that I was disease stable and in relative good health. I requested a bilateral mastectomy. I knew it would be tough surgery, but my life is worth it. I feel like saying that with pointed pauses.

My ... life ... is ... worth ... it.

Luckily, I had chosen an oncologist who respected my choice. After hesitation, and once my cancer was clearly stable, in August 2012 she agreed to sign off on the surgery. I am grateful for her respect and her extensive medical skills.

Dr. Bernie Siegel, the author of Love, Medicine and Miracles, observed in his work with cancer patients that a group he calls the "Exceptional Patient" had the highest survival rate of all the patients he treated. The Exceptional Patients insisted on being part of treatment decisions, and were perceived as noisy and demanding. Another way to refer to these traits? Defiant.

If the medical community views my choice of a bilateral mastectomy at stage 4 as defiant, so be it. I will continue to choose medical teams who work with me and respect that treatment decisions are ultimately mine to make. I will continue to respect my medical team’s expertise — I did choose them for their skill, after all. I will continue to be demanding about my care. And I will make lots of noise. Call that defiant. Call that difficult. I call that defiantly alive.
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Emma

Member
0 Replies
Posted on
July 25, 2015
Very well-written; I like your spirit and send you healing thoughts.
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Musa

Member
0 Replies
Posted on
July 25, 2015
Susan, the reason why the results from the 2008 study on mastectomy in stage IV breast cancer are contradictory to the findings in the studies presented in San Antonio into 2013 has to do with the quality of the research. The 2008 study was observational, meaning that they simply looked at the differences in outcomes of women who chose mastectomy versus those who did not. This shows in association, but cannot show causation, because other sources of bias info wincing outcome could have entered into the choice for mastectomy that patients made, such as less extensive metastatic disease, better access to care, etc. The 2013 studies on the other hand (and I believe there were two not one) were randomizedcontrolled trials, in which women with Stage IV de novo BC were randomly assigned to either receive mastectomy or not and then followed over time to look at length of survival. In this kind of clinical trial, other sources of bias are eliminated through the process of randomization, and so the outcome can be attributed to the intervention being tested. In one of the studies there was a slight suggestion of shorter survival with mastectomy, although this was not statistically significant. There has been some research to suggest that removing the primary tumor can stimulate growth in metastatic sites, but this is still largely theoretical. Still it is food for thought…so I think the jury is actually still out on this question, pending the results of a randomized trial being done in the US that is still accruing.
Report
Musa

Member
0 Replies
Posted on
July 25, 2015
Susan, the reason why the results from the 2008 study on mastectomy in stage IV breast cancer are contradictory to the findings in the studies presented in San Antonio into 2013 has to do with the quality of the research. The 2008 study was observational, meaning that they simply looked at the differences in outcomes of women who chose mastectomy versus those who did not. This shows in association, but cannot show causation, because other sources of bias info wincing outcome could have entered into the choice for mastectomy that patients made, such as less extensive metastatic disease, better access to care, etc. The 2013 studies on the other hand (and I believe there were two not one) were randomizedcontrolled trials, in which women with Stage IV de novo BC were randomly assigned to either receive mastectomy or not and then followed over time to look at length of survival. In this kind of clinical trial, other sources of bias are eliminated through the process of randomization, and so the outcome can be attributed to the intervention being tested. In one of the studies there was a slight suggestion of shorter survival with mastectomy, although this was not statistically significant. There has been some research to suggest that removing the primary tumor can stimulate growth in metastatic sites, but this is still largely theoretical. Still it is food for thought…so I think the jury is actually still out on this question, pending the results of a randomized trial being done in the US that is still accruing.
Report
Susan Fariss

Member
0 Replies
Posted on
July 25, 2015
Musa. I really appreciate the perspective re the studies. You are one of the few voices out there for metastatic breast cancer. Still, these studies point illustrate the next for far more studies in metastatic breast cancer. Only 7% of research goes toward metastatic breast cancer (mbc), yet Stage IV breast cancer patients are 30% of the breast cancer population.
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Musa

Member
0 Replies
Posted on
July 25, 2015
Susan, forgive me for nit-picking, but I'm a stickler for accurate statistics. So I hope you won't be annoyed with me for pointing that while an estimated 20-30% of patients diagnosed with Stage I-III breast cancer eventually develop metastatic (Stage IV) breast cancer, this doesn't mean they represent "30% of the breast cancer population" even when combined with the 6-8% of breast cancers diagnosed Stage IV from the start. Here's a more accurate way to think about prevalence of MBC within the larger BC population: from the NCI's SEER databases we know there are approximately 3 million US women alive today who have been diagnosed with breast cancer at some point in their lives. An estimated 150,000 to 200,000 of these are women living with MBC. If these estimates are correct, this translates to MBC patients representing only 5% to 6.7% of the entire breast cancer population. No wonder women living with mets feel isolated in a sea of pink! The percentage is that small because the vast majority (93 - 95%) of breast cancer patients alive today are, statistically speaking, "cured" in the sense that they will die of other causes. But of course no individual survivor can ever be completely confident that she is cured--there are only statistical probabilities to rely on.
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Susan Fariss

Member
0 Replies
Posted on
July 25, 2015
The point if article was advocating for yourself and the need for more research in Stage IV cancer was. Every woman who has had breast cancer has a good chance of that cancer spreading. And when we've moved to Stage IV, our lives are still important.
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Susan Fariss

Member
0 Replies
Posted on
July 25, 2015
The point if article was advocating for yourself and the need for more research in Stage IV cancer was. Every woman who has had breast cancer has a good chance of that cancer spreading. And when we've moved to Stage IV, our lives are still important.
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Susan Fariss

Member
0 Replies
Posted on
July 27, 2015
Emma: Thank you so much. That means a lot to me.
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Susan Fariss

Member
0 Replies
Posted on
July 29, 2015
Btw, here is an excellent analysis of the statistics of metastatic breast cancer done by the folks over at the Metstatic Breast Cancer Network. MBCN Responds: Metastatic Recurrence Rate Statistics https://mbcnbuzz.wordpress.com/2015/07/26/mbcn-responds-metastatic-recurrence-rate-statistics/
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