Printed as commentary in the Owosso Argus Press 10/15/07 - five months post BPM
Their title - Cancer prevention too aggressive course for physician.
__________________________
My Title - Proud to be able to make life affirming choices to reduce cancer risk - I like it better.
I had always assumed that I was at high risk for breast cancer. Mom had been diagnosed with it in her 40s. Dad’s sister had breast cancer in her 40’s. I am single and never had any children and am overweight. If you had asked me or my physician, we would have estimated my risk to be around 18%. The average woman has a 12% risk. Because of these risk factors, my doc started me on screening mammograms before age 40, and even mentioned taking tamoxifen as a preventative measure.
Despite studying families with hereditary breast and ovarian cancers in medical school, it never occurred to me that I might be at risk of carrying a “breast cancer” gene until my aunt tested positive for BRCA1 mutation in March of 2006. I am so thankful that my cousin recognized that her mother might be at risk, after having breast cancer in her 40s and then having it return in the same breast after lumpectomy.
BRCA1 and BRCA2 are breast and ovarian cancer prevention genes, which if normal help protect a woman from getting either type of cancer. A mutation of these genes can be inherited from one’s mother or father. If one parent has the faulty gene, then there is a 50 % chance that each child will get it. These mutations are rare, affecting about one in 50 women of Ashkenazi Jewish heritage (Northern European) and about 1 in 500 women of other heritage.
Nine months after my aunt told us about her situation, my father tested and found out that he also carried the mutation.
Once Dad’s test came back, I immediately went to the internet to learn more about this condition, as I suddenly realized I had a 50% chance of inheriting it as well. I was looking for a loophole that meant I did not have to worry. While waiting to test myself, I spent 2 weeks online reading scientific articles and feeling very scared and alone. It was hard to accept having such a high risk of getting cancer, and even harder to imagine having to decide about the various risk reduction strategies, including preventative surgery.
It was during this time that I found FORCE. ( www.facingourrisk.org ) Facing Our Risk of Cancer Empowered is an organization started by Sue Friedman, a veterinarian who learned that her breast cancer at age 33 was the result of a BRCA mutation. This website includes resources and information for other women facing the prospect of hereditary breast or ovarian cancer.
(Most useful to me is the message board, where hundreds of women and a few men have posted stories, questions and discussions about every aspect of this syndrome. I knew I was in the right place after reading about a woman in New Zealand, my age, with my name, who was involved in the process of taking action to minimize her risk of getting cancer. - edited out) Despite the fact that this syndrome is so rare, I was able to get advice from women all over the world, who understood exactly what my hopes and fears were. The site was so comforting. ( These people held my hand, virtually, as I waited for test results and then served as guides, as I wound my way through the array of preventative options available to me. Edited out)
This year, I learned that I had tested positive. I had inherited a breast cancer gene mutation.
Despite the scary news about my condition, I felt blessed and very thankful that my cousin had appropriately assessed the risk of this gene being present in our family, and encouraged my aunt to test. I am also so thankful that my aunt was proactive, got tested, and gained the knowledge that my sisters, cousins and I needed to be aware of our risks.
Most people recommend seeing a certified genetics counselor before testing, but I did things a little backwards. After my test results were received, I looked to this expert regarding this rare condition to help me figure out what my options were to minimize my risk of getting cancer.
My choices included surveillance, medications or surgery.
Surveillance means frequent testing to try to catch cancer at an early and curable stage. (To me, it seems like a reasonable option for managing breast cancer risk, because clinical breast exams( by physician, PA or Nurse Practitioner), mammogram and MRI are pretty good at catching breast cancer at an early stage. I am not comfortable with the idea of surveillance as a strategy for managing ovarian cancer risk in a patient with a BRCA mutation, because there is not any test which can reliably catch ovarian cancer at a treatable stage. Edited out)
Medication treatment would involve using tamoxifen to limit my exposure to estrogen, and therefore decrease the risk of breast cancer. ( benefit is higher in women who start treatment at a younger age. Edited out)
I, however, was determined not to get cancer at all, and opted for risk reduction surgery instead. I did not want to have to worry about whether or when I would have to take 9 months out of my life to fight cancer. I had watched my mother thrive after having bilateral mastectomies to treat and prevent recurrent cancer after her diagnosis. A friend labeled my decisions “life affirming.” I like that term.
The removal of the ovaries was my first priority. Usually it is recommended to do this surgery at age 35 in women with my mutation, because this age seems to balance the risk of getting cancer with the side effects of no longer having the usual hormones that younger women should have (surgical menopause.) (I opted for a laparoscopic surgery and my recovery was quick and nearly painless. I was able to return to work in 10 days and have been lucky that my menopausal symptoms have been minimal. Edited out)
Next up was the BPM. This is short for bilateral prophylactic (preventative) mastectomy, or removal of both breasts. It was tough for me to grasp the notion that this was the “best” option for me to avoid getting breast cancer. (One medical text pointed out that this preventative step is actually more drastic than the treatment for a usual case of early breast cancer. Edited out) Unfortunately, because of the gene mutation, I knew that if I waited to get breast cancer, there was no guarantee that I would catch it early enough to be able to avoid chemotherapy. (There would be a risk that it could spread to lymph nodes or other organs and be incurable. –edited out)
The next decision that I faced was whether to have reconstruction or not. I was pleasantly surprised to learn of my options for surgical reconstruction and to see that the results looked much better than I imagined. I was, however, very interested in getting back to work and life quickly and ultimately decided not to have reconstruction. I did worry about what people would think, who would notice, how I would look, and how I would cope with the whole situation. ( My therapist and I decided that I would be able to handle whatever ensued. Edited out)
The surgery was uneventful. I woke afterward, relieved to be done. I did have some pain for several weeks after surgery. (This was an interesting situation for me, because I frequently prescribe pain medications for patients and had never needed them myself in the past. It was educational to see that I needed higher dosages than average right away, and a relief to see that the new nerve pain medication worked so well. Edited out) For the first 4 weeks after surgery, my assignment was to rest and let my body heal. Then, I was on to the rehab phase where I was allowed to gradually increase my activity and begin to exercise. I was very glad to be back to biking, golfing and yard work 6 weeks after surgery.
I have been pleasantly surprised that strangers don’t seem to notice my, new, flat appearance. Clothes fit well and my diet and exercise program seems to be going well. ( I am very committed to losing ‘the other 60 pounds of excess health risk.’ Edited out)
Last week one of my colleagues asked about the impact of my surgeries on my likelihood of getting cancer. I felt relief and pride as I rattled off the change in my cancer risks. Breast cancer risk decreased from 87% to 2% and ovarian cancer risk from 44% to 2%. (It is very nice to be done. Edited out)
I am glad to be able to share my story, in the hopes that others will become more aware of hereditary breast and ovarian cancer syndrome, of the availability of testing, and of the fact that many women are glad to have the information and the choice of how to manage their risk of cancer if they have a faulty BRCA gene. Certainly it is a scary subject, and it is important to realize that most breast and ovarian cancer is NOT hereditary. Indicators of risk for a BRCA mutation include: breast cancer before the age of 50 or ovarian cancer at any age, mother, grandmothers, sisters or aunts with breast cancer before 50, any relative with ovarian cancer, a male relative with breast cancer, or if 2 or more close relatives had breast cancer. Those who think they might be at risk should ask their doctor about whether genetic counseling would be appropriate for them. Those at high risk should start screening with annual breast MRI's in their 30's.
All women should follow the recommended screening routine to ensure that breast cancer is caught early. Early stage breast cancer is very treatable.
1. All women age 40 and older should have a screening mammogram every year and should continue to do so for as long as they are in good health.
2. All women in their 20s and 30s should have a clinical breast exam (CBE) as part of a periodic (regular) health exam by a health professional preferably every 3 years. After age 40, women should have a breast exam by a health professional every year.
3. Self breast exam is recommended for all women over 20.
____________________________________________
This paragraph belongs in the article, but unfortunately I did not include it. Written for another source
Although ovarian cancer is relatively rare (1 in 67 women will get it), it is difficult to catch early. Most of the warning signs more commonly represent other conditions. There are new recommendations, however that women who have daily symptoms for more than a few weeks should see a gynecologist, particularly if these symptoms represent a change from normal, or become more severe. Symptoms of concern include: bloating, pelvic or abdominal pain, trouble eating or feeling full quickly, or urinary symptoms such as always feeling like you have to go or going more often.
Saturday, October 06, 2007
The rest of the BRCA risk reduction story
Once I had finished the oophorectomy, the BPM loomed ahead. Bilateral prophylactic or preventative mastectomy meant removal of both breasts before cancer was identified. I only had 36 days between the 2 surgeries. BPM is such a hard thing to consider. Definitely disfiguring. Extreme. More drastic than the treatment of most breast cancers. Unfortunately, BRCA breast cancer is not like most breast cancers. It tends to recur if mastectomy is not done. No one could assure me that surveillance could promise catching the cancer early enough to be curable.
Both my Gyn and Family Medicine doc said that the oophorectomy was needed, but that I did not have to have BPM. I suspected that they did not want me to get stuck on whether to have the mastectomies and put off the ooph in the process. The appointment with the genetics counselor had confirmed that my risk of getting breast cancer was very high, and that tamoxifen would reduce my risk by only 1/3 as many BRCA1 cancers are estrogen negative. To gain the full 50% reduction of risk for breast cancer by having an oophorectomy, I would have needed to have the ooph at 35. Unfortunately, I was blissfully ignorant at that time. The GC mentioned some modest benefit from dietary and supplement measures I could take. Then she seemed very relieved to hear that I was planning on BPM.
I played with the statistics. 87% risk x 80% long term survival still came out to 17% chance of being dead, and possibly in my 50s.
I felt that there were many things that made this choice easier for me. Mom did so well after her BPM for lobular carcinoma in situ in 1988. I knew how devastating cancer could be after watching and unrelated uncle die of colon cancer, seeing patients struggle with it, and watching my housemate’s mother fight so hard against metastatic kidney cancer. A patient’s CT scan is indelibly etched in my brain. I saw her 2 days before my test results came back. At 52, she had mastectomy with saline implant on one side, mastectomy with external prosthesis on the other and lung mets, all on the same film.
I wanted my BPM as soon as I could arrange it.
The next step was to decide on reconstruction or not. I explored the FORCE site and took note of the posts about each type of reconstruction. I was very pleasantly surprised at the post op photos on FORCE and elsewhere. I was also pleasantly surprised to see a photo of a topless Dutch woman, swimming on the beach, surrounded by her children with a big smile on her face. The scars were evident, but not bad at all. I participated in a spirited thread about “no recon” options, including discussions of whether it is possible to have a cosmetically appealing surgery, like some male to female transsexuals receive.
Reconstruction seemed like a long process whichever type was chosen. I was very aware of my aunt’s complications after her TRAM procedure. I never did consider traveling for a “One Step” procedure.
I felt that “no recon” fit with my personality and my body image. When younger, I was thin, fit, and small chested. I still tend to think of myself that way, although the body got away from me long ago. I tended to begrudge the D’s that went up and down first with every fluctuation in my weight. I dress androgynously, and usually in men’s clothes, which often don’t fit well or require a larger size because of my large chest. (and wide hips) I thought that reconstruction would result in longer rehab time and more restrictions, as well as a higher risk of complications. In my profession, as a physiatrist, I had seen some serious disabilities result from surgical complications. I wanted to avoid that at all costs.
The morning of the surgery, I felt calm, and was pleased that the anesthesiologist honored my request for no versed. I had been in la-la land for about 5 hours after my previous surgery and did not like that feeling. My friend and my parents were in the waiting room with me. It was nice for me, to be awake in the OR until they gave me the general anesthetic. I awoke in the recovery room, clear, but in pain, and very relieved to be done. I was a bit dismayed by the pink flowered binder around my chest, but took it in stride. The pink binder was a good source of comic relief during the next few weeks. It also made car rides much more manageable. The pain meds were delivered quickly and worked well. I had a long ride to the overnight stay area, and was glad to be awake to reassure my parents that I was fine.
There was a brief struggle with balancing the pain and nausea during my night in the hospital. I was so glad to be in the hospital overnight. The ride home was uneventful. It was very nice to have my parents stay the first few days. It was also nice to feel comfortable managing for myself. I was able to take care of the drains myself and get a quick meal or snack. I slept a lot, and vegged out. I gladly included my mom and my housemate in my photo project to document my look over the first few weeks after surgery. I was very pleased with how well the muscle shirts worked for drain holders. My appearance at the local Relay for Life event 4 days after my surgery was ceremonial only, but there is a photo. My Great Goose photo earned some money for the event.
The next few weeks revolved around pain meds, meals, rest and computer time. My family doctor helped me get a pain regimen that worked. It included Vicodin during the day and MS Contin at night, and low dose lyrica for the nerve pain. I posted on FORCE a lot. At 3 weeks after surgery, I went back to the breast surgeon. She deemed my drain output too large to pull the drains and chided me for typing too much.
One week later, I had my local surgeon pull the second drain, after the Family Medicine physician helped with the first. We decided that we would watch any fluid that remained and take action if needed. I returned to work 4 weeks after surgery. My heart was not really in it. I was thrilled to see that my patients were so supportive and welcoming.
Gradually, I resumed my usual activities, including golf, kayaking, biking, and a little yard work. The pain and ropelike sensation around my chest gradually resolved. The scars have evolved over time. It took about 8 weeks for the fluid to resolve. I had small scares with a stitch granuloma and a case of cellulitis without pain, fever or illness. Those resolved with oral antibiotics.
Now, at 6 months out, the scars are still red and obvious. The chest muscles only occasionally get tight, and there are intermittent weird sensations as the numbness slowly resolves. I am back to full activity, and more engaged at work. I still rely on the FORCE message board and chatroom as a part of my coping process. I was thrilled to be able to meet men and women from the Boston group this weekend. Strangers don’t seem to notice that I don’t have breasts and a few of the FORCE women asked which kind of reconstruction I had.
I am very proud of myself for being able to take action so quickly. I was thrilled last week to be able to respond to a coworker’s question that I had decreased my breast cancer risk from 87% to 2%. I am still not sure what the future will look like, but am happy to be planning instead of worrying.
Both my Gyn and Family Medicine doc said that the oophorectomy was needed, but that I did not have to have BPM. I suspected that they did not want me to get stuck on whether to have the mastectomies and put off the ooph in the process. The appointment with the genetics counselor had confirmed that my risk of getting breast cancer was very high, and that tamoxifen would reduce my risk by only 1/3 as many BRCA1 cancers are estrogen negative. To gain the full 50% reduction of risk for breast cancer by having an oophorectomy, I would have needed to have the ooph at 35. Unfortunately, I was blissfully ignorant at that time. The GC mentioned some modest benefit from dietary and supplement measures I could take. Then she seemed very relieved to hear that I was planning on BPM.
I played with the statistics. 87% risk x 80% long term survival still came out to 17% chance of being dead, and possibly in my 50s.
I felt that there were many things that made this choice easier for me. Mom did so well after her BPM for lobular carcinoma in situ in 1988. I knew how devastating cancer could be after watching and unrelated uncle die of colon cancer, seeing patients struggle with it, and watching my housemate’s mother fight so hard against metastatic kidney cancer. A patient’s CT scan is indelibly etched in my brain. I saw her 2 days before my test results came back. At 52, she had mastectomy with saline implant on one side, mastectomy with external prosthesis on the other and lung mets, all on the same film.
I wanted my BPM as soon as I could arrange it.
The next step was to decide on reconstruction or not. I explored the FORCE site and took note of the posts about each type of reconstruction. I was very pleasantly surprised at the post op photos on FORCE and elsewhere. I was also pleasantly surprised to see a photo of a topless Dutch woman, swimming on the beach, surrounded by her children with a big smile on her face. The scars were evident, but not bad at all. I participated in a spirited thread about “no recon” options, including discussions of whether it is possible to have a cosmetically appealing surgery, like some male to female transsexuals receive.
Reconstruction seemed like a long process whichever type was chosen. I was very aware of my aunt’s complications after her TRAM procedure. I never did consider traveling for a “One Step” procedure.
I felt that “no recon” fit with my personality and my body image. When younger, I was thin, fit, and small chested. I still tend to think of myself that way, although the body got away from me long ago. I tended to begrudge the D’s that went up and down first with every fluctuation in my weight. I dress androgynously, and usually in men’s clothes, which often don’t fit well or require a larger size because of my large chest. (and wide hips) I thought that reconstruction would result in longer rehab time and more restrictions, as well as a higher risk of complications. In my profession, as a physiatrist, I had seen some serious disabilities result from surgical complications. I wanted to avoid that at all costs.
The morning of the surgery, I felt calm, and was pleased that the anesthesiologist honored my request for no versed. I had been in la-la land for about 5 hours after my previous surgery and did not like that feeling. My friend and my parents were in the waiting room with me. It was nice for me, to be awake in the OR until they gave me the general anesthetic. I awoke in the recovery room, clear, but in pain, and very relieved to be done. I was a bit dismayed by the pink flowered binder around my chest, but took it in stride. The pink binder was a good source of comic relief during the next few weeks. It also made car rides much more manageable. The pain meds were delivered quickly and worked well. I had a long ride to the overnight stay area, and was glad to be awake to reassure my parents that I was fine.
There was a brief struggle with balancing the pain and nausea during my night in the hospital. I was so glad to be in the hospital overnight. The ride home was uneventful. It was very nice to have my parents stay the first few days. It was also nice to feel comfortable managing for myself. I was able to take care of the drains myself and get a quick meal or snack. I slept a lot, and vegged out. I gladly included my mom and my housemate in my photo project to document my look over the first few weeks after surgery. I was very pleased with how well the muscle shirts worked for drain holders. My appearance at the local Relay for Life event 4 days after my surgery was ceremonial only, but there is a photo. My Great Goose photo earned some money for the event.
The next few weeks revolved around pain meds, meals, rest and computer time. My family doctor helped me get a pain regimen that worked. It included Vicodin during the day and MS Contin at night, and low dose lyrica for the nerve pain. I posted on FORCE a lot. At 3 weeks after surgery, I went back to the breast surgeon. She deemed my drain output too large to pull the drains and chided me for typing too much.
One week later, I had my local surgeon pull the second drain, after the Family Medicine physician helped with the first. We decided that we would watch any fluid that remained and take action if needed. I returned to work 4 weeks after surgery. My heart was not really in it. I was thrilled to see that my patients were so supportive and welcoming.
Gradually, I resumed my usual activities, including golf, kayaking, biking, and a little yard work. The pain and ropelike sensation around my chest gradually resolved. The scars have evolved over time. It took about 8 weeks for the fluid to resolve. I had small scares with a stitch granuloma and a case of cellulitis without pain, fever or illness. Those resolved with oral antibiotics.
Now, at 6 months out, the scars are still red and obvious. The chest muscles only occasionally get tight, and there are intermittent weird sensations as the numbness slowly resolves. I am back to full activity, and more engaged at work. I still rely on the FORCE message board and chatroom as a part of my coping process. I was thrilled to be able to meet men and women from the Boston group this weekend. Strangers don’t seem to notice that I don’t have breasts and a few of the FORCE women asked which kind of reconstruction I had.
I am very proud of myself for being able to take action so quickly. I was thrilled last week to be able to respond to a coworker’s question that I had decreased my breast cancer risk from 87% to 2%. I am still not sure what the future will look like, but am happy to be planning instead of worrying.
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