2nd draft of general newspaper article

Of course, I have no idea if my local paper will let me write my own article. My contact person is primarily a photographer, so that may help. 1500 words. Not sure if that is too long. Planning some side bars about physiatry, BRCA risk factors and online support groups.

______________

Local physician struggles with impact of breast cancer gene mutation

I had always assumed that I was at high risk for breast cancer. Mom had been diagnosed with lobular carcinoma in situ in her 40s. Dad’s sister had breast cancer in her 40’s and it had come back in the same breast after her lumpectomy. I am single and never had any children. I am overweight. If you had asked me or my physician, we would have estimated my risk to be around 20%. Because of these risk factors, my doc started me on screening mammograms before age 40, and even mentioned taking tamoxifen as a preventative measure.

I had no idea just how high my risk of getting breast cancer was until February 28th, 2007. That was the day that I got the results of my BRCA1 genetic test results. BRCA1 is one of 2 breast and ovarian cancer prevention genes, which if normal helps protect a woman from getting either of these 2 cancers. These gene mutations can be inherited from either mother or father. If a parent has the 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. Unfortunately, I had inherited one of these rare mutation from my dad.

Despite my familiarity with these gene mutations, I was not aware of how serious the situation was and did not expect that it could involve me or my family. After all, only one relative on each side had had breast cancer. The paperwork that came with Dad’s positive test caught my attention. It said that I had an 87% chance of getting breast cancer, by age 70, and a good chance of getting it in my 40s. And that I had a 44% chance of getting ovarian cancer.

Once Dad’s test came back, I immediately went to the internet to learn more about this condition that suddenly had a 50% chance of applying to me. 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 imagine having such a high risk of getting cancer, and it was hard to consider having to decide about the various risk reduction strategies, including preventative surgery.

Fortunately I then found FORCE. ( http://www.facingourrisk.org/ ) Facing Our Risk of Cancer Empowered is a website and organization started by Sue Friedman, a veterinarian who learned that her breast cancer at age 32 was the result of a BRCA mutation. Her site includes resources and information for other women facing the prospect of hereditary breast or ovarian cancer. And most useful to me is the message board, where hundreds of women and a few men have posted “threads,” stories, or questions about every aspect of this syndrome.

Immediately, I was 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. The site was so comforting. Despite the fact that this syndrome is so rare, I was able to get advice from women from around the world, who understood exactly what my hopes and fears were. 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.

Despite the frighteningly high risk of cancer that the faulty BRCA gene promised for me, I have felt very blessed and lucky to have this knowledge before getting cancer. I am so thankful that my cousin recognised the risk and asked her mother to test.

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 specialist to help me figure out my options 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 Practioner), 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.

Medication treatment would involve using tamoxifen to limit my exposure to estrogen, and therefore decrease the risk of breast cancer. The benefit is higher in women who start treatment at a younger age.

I was determined not to get cancer at all, and opted for risk reduction surgery instead. As a physician, I had seen patients fight cancer, and knew exactly the toll it could take on a person. 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 liked 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. This technique uses instruments though four 8-10 mm holes in the abdomen and is not very invasive. In my case the recovery was quick and nearly painless. I was able to return to work in 10 days. I have been lucky that my menopausal symptoms have been minimal.

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. 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.

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. There were also other factors that lead me to decide 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.

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. 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 of gradually increasing activity and 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. My diet and exercise program seems to be going well. I am very committed to losing ‘the other 60 pounds of excess health risk.’

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.

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 BRCA1 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, mother, sisters or aunts with breast cancer before 50, a male relative with breast cancer, or if 2 or more close relatives who have had breast cancer. Those who think they might be at risk should ask their doctor about whether genetic counseling would be appropriate for them.

Catching up on the preparation for Hyst/ooph

Here is a run down of my preparation for hyst/ooph and recovery process.

I started my round of consulting specialists. I went to a genetics counselor, who presented my options for reducing my risk. Surveillance means frequently doing tests to check for breast or ovarian cancer, so it can be treated early if, or when it shows up. Vitamins may help the body do a better job of preventing cancer. Tamoxifen has been shown to decrease the risk of breast. Risk reduction surgeries offer the highest likelihood of preventing cancer.

I went to a Gyn Oncology Surgeon, who felt that removing my ovaries was a good option. I went to a breast surgeon who seemed glad that I was opting for surgery to remove my breasts rather than risk breast cancer.

I saw my Family Medicine doctor who strongly urged me to have the ovaries out. I went to my therapist, and she and I determined that I would be able to handle the choices I was considering.

And then I scheduled risk reduction, preventative, prophylactic laparoscopic hysterectomy and oophorectomy, and bilateral mastectomies.

And started getting ready for the hysterectomy. I researched my options for type of surgery, and chose the DaVinci total laparoscopic hysterectomy. (removal of both ovaries and uterus ) My comfortable nerdie surgeon would sit at a computer station and operate a robot to do the internal parts of the surgery through small port sites.

I researched my options regarding hormone replacement, and the side effects of premature menopause. And decided that I would wait to see if the side effects were bothersome before deciding. I read Germaine Greer, about the politics of hysterectomy and decided it did not apply to me.

I considered why God would arrange so many events so that I would be ready to act and have the knowledge of my condition, without any of my known relatives dying. I felt so lucky and so blessed, but confused as to why me. I worried about what responsibilities came with this gift.

I read, with much fear, about how special procedures needed to be used to make sure that the pathologist noticed if there was a small ovarian cancer already growing in the tissue removed. Ten percent chance of there being an occult (hidden) ovarian cancer kept me from sleeping much before surgery.

The day the calls came to schedule the surgeries it all seemed so much more real.

After a nice vacation with relatives in Boston and wonderful face to face meetings with two new FORCE buddies, I started my bowel prep on Easter day. Jello jigglers from my partners Mom. Trying not to worry about the reason for the prep, the possible complication of bowel perforation and all that could entail. Glad for the Peggy Huddleston CD on how to relax before surgery.

Surgery was early in the morning. Fortunately Pam drove well and kept me calm as I walked in to have surgery for the first time in my life. With nothing wrong with me, I hoped. The staff at Beaumont was wonderful, comforting, efficient. In to surgery at 8:30 on the dot. And to the recovery room by 12:30. Vague, brief awareness for a few seconds in the recovery room, and the room, and then finally awake and craving a diet coke by 5 PM. Answered the call from the doc, and got permission to stay the night. Finally felt good by 8 PM, just in time to sign on and check in on the message board, and participate in the Monday night chat. Up walking to the bathroom, and to comfort the lady in the next bed overnight, and then ready for the doc to discharge me by 9 AM the next day. Happy, but nervous after convincing them to let me walk out of the hospital. Made it to the car, and home. Done with surgery #1. Glad to get the report of only a benign cyst by the next week.

Part 3 – very rough but done.
I had DaVinci laparoscopic hyst/ooph on 4/9 at Beaumont in Royal Oak Michigan.
I was feeling good enough by 9:30 PM that I could have gone home. Very little pain.
The day after surgery, I went home by 10 AM, and was up walking short distances comfortably. Needed to rest in the recliner much of the time for the first three days after surgery. Shoulder pain if sitting up straight. Took 1/2 vicodins the first day after surgery and a whole vicodin at bedtime the second night. A little uncomfortable laying flat. Tylenol and celebrex after that for the first week. Took simethicone for gas, and laxative for the first week.
By the 4th day after surgery, I was up more, straightening up the house, and visiting with relative. I could lay on my side or stomach.
5th day, I rode 90 minutes to a family party and was up visiting for 6 hours, before napping on the way home.
6th day, I walked about 1500 feet in the yard.
7th day, drove to run a few errands. dizzy after standing and walking 30 minutes.
8th day. Walked .6 miles.
9th day. Walked 1.4 miles, good pace. Permission to return to sedentary, seated work the next day. (doc said he would be glad to keep me off for 2 weeks)
10th day. Worked, got tired in late afternoon, but stayed up late visiting.
11th day, tired, useless at work.
12th day. Up visiting all day
13th day Rode bike 40 minutes. Very light yard work one hour. Needed to rest between.
14th day. Worked. Came home and took nap after.
15 - 17th worked, and a little tired after. Not 100 percent but better each day.
Still needing to rest and not ready for sustained heavy work.
Not allowed to lift more than 10 lb first two weeks, or do situps.
Nothing in the vagina x 6 weeks.
3 port sites healed very quickly. One came open and bled a little and is nearly healed now.
Bowels screwed up with gas, IBS symptoms for the first week.
Pretty much just as my doctor promised. I was happy not to have to be discharged from the hospital the same day as my surgery.
I can't really explain why I was so lightheaded for several days if I stayed up long, but I really could not have worked comfortably until the 9th day after surgery, and could not have done a demanding job that I could not take it easy until day 14. Medium Physical work, perhaps by 21 days. Heavy work, perhaps by 4 weeks.
Margaret, very pleased with DaVinci lap hyst. Perhaps not the best judge of pain.