In 1992, at age 57, I was diagnosed with a small stage 1 infiltrating ductal carcinoma with one positive lymph node in the left breast; 22 out of 22 axilla nodes were negative. I had a lumpectomy, 30 sessions of radiation, and 6 chemotherapy sessions of CMF.
Except for the nausea related to chemotherapy, I did relatively well during treatment. Prior to my treatment, I had been taking 0.625 mg Premarin. I was strongly advised to get off the estrogen immediately and I did so over a two-week period. The side effects of estrogen withdrawal were horrendous. Severe leg cramps at night kept me from sleeping and bizarre mood swings destroyed any peace I could hope for in my daily living. In addition, my libido was nonexistent.
Quality of life issues were part of every discussion with my doctor. Finally, when a testosterone test came back below detection limits, I decided the risk of taking estrogen and small amounts of testosterone were worth it, given that I was seriously thinking of divorcing my husband so he could find someone else and have a better life than the one I could give him. This decision came after a hellish year of feeling like my life was on hold. My oncologist agreed. I got on with my life.
In December 2007, I was once again diagnosed with breast cancer in the left breast. Whether it is a new cancer or a reoccurrence is an unknown. This time, 15 years later, it is a 2.1 cm stage 3 cancer with 4 out of 4 positive lymph nodes. There was only one choice: a mastectomy followed by chemotherapy and radiation. I went off of the premarin and testosterone over a six-week period. I was grateful to find that I had no side effects from estrogen withdrawal.
The surgery went well, with one exception. I developed a large persistent seroma that refused to heal. Now five months after surgery, I still have a drain.I had four sessions three weeks apart of TC (taxotare and cyclophosphomide). This time, the nausea was kept under control by a regime of four drugs (zofram, dexamethazone, compazine, and lorazapan). After the first session, I lost my hair. I took this opportunity to buy a blonde wig.
Other side effects were minimal until after the third session, when I began to lose my ability to respond to sexual stimulation. I want to have sex, but it is like my sexual organs are numb. My husband and I still have sex. I like the closeness and derive some happiness at feeling his response. Again, there are no definitive answers as to when or if I will get my sexual life back. It isn't fair.
I have now finished 18 of 25 radiation treatments and the drainage from the seroma is about 45 cc/day, which is about half of what it was when I started radiation. I have searched the Internet for a way to accelerate the healing of seromas without success. Journal articles report on a variety of methods, but other articles show that none of them make a difference.
My surgeon had the drainage analyzed and found that there are malignant cells in the fluid. Apparently, this may be caused by microcancers in the lymph system that interfere with healing. Since it is rare to analyze seroma fluid in breast cancer patients, no one knows how common this is. An article out of Harvard suggests that there is no relationship to the risk of metastasis, but the database is limited. A PET scan and breast MRI were negative. I have had the drain replaced once when it malfunctioned and the system is working well, but the psychological stress of carrying this around with me is grim.
My next decision is whether I will take tamoxifen or an aromatase inhibitor (AI) for five years. I have a lot of muscle and joint pain from arthritis so there is concern that taking the AI will make the pain even worse. In addition, AIs generally cause a lower libido than tamoxifen. My oncologist has suggested that I take tamoxifen for two years and then switch to an AI if there is nothing better on the horizon at that time. Although some women take an AI and suffer no side effects, others are devastated. There is no free lunch.
So here I am, five months after surgery with no left breast, a seroma that refuses to heal, a non-existent sex drive, no hair, and aches and pains of various sorts that I didn't have before. But it could be worse. To be continued...
Updated August 26, 2008
Seroma Madness
It has been seven months since my mastectomy and the seroma continues to drain. The good news is that after 25 radiation treatments, the malignant cells in the drain fluid are gone. Radiation apparently destroyed the source of the cancer cells. My breast surgeon had no idea what to do next. Her approach seemed to be a combination of wishful thinking and time heals all wounds philosophy.
I took the initiative and discussed my case with the Director of the Virginia Mason Hyperbaric Center. Breathing pure oxygen at 2.4 atmospheres has been shown to build new circulation pathways and is used primarily for radiation-damaged tissue. It is also being studied for lymphedema treatment in the U.K. If the oxygen could heal my breast tissue damaged by the radiation of 15 years ago plus my most recent radiation treatments, then the seroma might heal. The doctor gave it a 75% chance of success.
Hyperbaric oxygen treatment is a major commitment. Forty treatments each lasting two hours takes over your life. Each morning, I drive to the hospital, change into surgical scrubs (you are not allowed to wear your own clothing) and enter a large chamber along with seven other patients. The chamber is first pressurized to the equivalent of 45 feet of water (2.4 atmospheres) with air. A clear plastic bubble is placed over your head and the oxygen is pumped in. It is relatively comfortable. You sit in a lazy-boy style chair and read or sleep. I have finished 31 of the 40 treatments.
Unfortunately, I am not responding as expected. The volume of drain fluid soared from 20 to 30 cc/day after the radiation to 60 plus cc/day. I have heard a lot of "maybes" from the medical staff. Maybe the new capillaries are weeping. Maybe there is another micro-tumor that is pumping out fluid so fast that the seroma can't heal. Maybe, maybe, maybe. Once again, it was up to me to find a new solution to the problem.
I consulted a well-known breast surgeon at a major cancer center here in Seattle and she suggested using a sclerosing agent. Sclerosing agents are used to rough up the inner surfaces of the seroma to build scar tissue and seal off the drainage. She injected a solution of doxycylcine and lidocaine through my drain tube. The tube was then capped for four hours to keep the solution in contact with the seroma. It was mildly uncomfortable. At first the drainage volume increased, but in the past few days it has gone down to around 40 cc/day. I see her next week for a second treatment. If the second treatment doesn't finish the job, then I will need to find yet another surgeon. I prefer to believe that there is light at the end of the tunnel. I just hope that it isn't a freight train.
In spite of the seroma craziness, I have had some good news. I started Tamoxifen over a month ago and have had no side effects other than some very mild hot flashes. My hair is growing back. My sexual response is once again normal and my aches and pains are no worse than they were before I had cancer. Only the seroma and the drain darken my otherwise normal life. My old drain finally became so painful from being in for so long, that my doctor sent me to an intervention radiologist who put in a different kind of drain using an x-ray machine to guide its placement. He also created a system using an ostomy bag that does not require a suction bulb or collection bag around my waist. I sometimes forget the drain is there and I can sleep through the night. With luck, there will be more good news to come. To be continued…
Updated October 2009
Finally: A Seroma Solution
In my last chapter, I reported that the seroma that formed after my mastectomy continued to drain out of a hole in my chest, and an ulcer formed that would not heal. I had 40 sessions of hyperbaric oxygen, 4 sclerosing treatments with doxycycline, and numerous sessions at a wound care center—without success. Although the amount of fluid from the seroma decreased, and I no longer needed a drain, the open wound in my chest put out a yellow viscous fluid that smelled like something had died. I worried constantly that others could smell me. I changed my bandage daily. In addition, I developed lymphedema in my arm and hand, which required the daily use of a compression garment. After 18 months of dealing with the seroma, I was worn out.
My breast surgeon thought that maybe a plastic surgeon would be able to remove the seroma, but the doctors I consulted had either never dealt with a problem like mine or refused to operate on a patient with so much radiation damage to the tissue. If they operated and I failed to heal, the result would be tragic. I had my doctor friends calling their colleagues around the country for help. No luck. I threw myself on the mercy of my new oncologist at the Seattle Cancer Care Alliance. She referred me to Dr. Neligan at the University of Washington Medical School. I was told that if he couldn't fix my problem, no one could.
It took two months to get an appointment. Within moments of examining me, he had a plan--one that took my needs into account. Others had suggested taking my latissimus muscle to fill in the hole once the damaged tissue was removed. This could have greatly aggravated my lymphedema, as the muscle would have been dragged into place through my armpit. In addition, using the muscle would have negatively impacted my future skiing and kayaking, two sports that are an important part of my life. Dr. Neligan thought it might be possible to do a DIEP procedure using my tummy fat. This procedure is used for breast reconstruction. The fat is removed without disturbing the muscle underneath and moved up to the chest where circulation is re-established by attaching whatever arteries or veins are available in the fat to the ones in the chest using microsurgery techniques.
It took two months to get a surgery date. The surgery took seven hours. I spent two days in the ICU and three additional days in the hospital. The ICU nurses checked my tissue transplant hourly to make sure it was still living. It lived. I now have a small round breast where my ulcer once flourished. I am delighted. I never thought I would agree to more surgery, but in two months I will have my other breast reduced and a nipple put on the new breast so they will match. Yes, I will be even more flat-chested than before, but I will look normal and the hole is gone. What is even more amazing is that my lymphedema is gone. The doctors believe that the inflammation and infection in the seroma/ulcer overwhelmed my lymph nodes. Now that the inflammation is gone, my lymph nodes are coping.
If there is a breast cancer patient out there with a persistent seroma, please know that there is hope. My seroma battle lasted more than 18 months. It took the right doctor to find a solution.
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