Survivor Stories 2015:
1. How did you first find out you had cancer?
At my annual physical in January, I asked my internist about a tiny, painless, flat spot under my breast. I had noticed it after yoga class while showering during the Christmas holidays. Neither thought it was going to be an issue. I had my annual mammogram in August 2014 and my annual ObGyn appointment in November 2014 and nothing was suspicious. My doctor ordered an ultrasound and biopsy just to make sure. I could tell by looking at my radiologist’s face, the small jagged mass on ultrasound was concerning, and after 50 questions, we discussed it was likely cancer. The biopsy results proved it several days later.
2. How did you react when you heard the news?
I’m an engineer by training and mindset, and immediately after talking with the radiologist, went into problem solving mode. I asked my doctor many questions about the types of cancer and statistics, what decisions I would have to make, what doctors I would need, who they recommended, and what treatment options were available. By the time I was notified the biopsy was positive, I had decided which doctors I would use and had an idea of how I would move forward.
3. What course of treatment were you prescribed?
I was diagnosed with early stage, estrogen receptor positive, invasive lobular carcinoma. This less common type of breast cancer is more likely to spread to the other breast, and the flat characteristics of the tumor make it tricky to detect.
With my own research and advice from my team of doctors, I decided my best course of action was bi-lateral mastectomy with immediate breast reconstruction, instead of the other choice of a lumpectomy followed by radiation. I knew going forward I didn’t want to constantly worry about the cancer spreading to the other breast. And, I learned there could be irreversible side effects from the radiation, which could make successful breast reconstruction after radiation difficult. Bi-lateral mastectomy and reconstruction were my personal choices. This might not be the right decision for everyone, but I’m comfortable with the choices I made during what was a very intense and fast paced time.
My oncologist then prescribed Tamoxifen, the anti-cancer drug to reduce my changes of reoccurrence, for the next 5+ years.
4. What most surprised you about your treatment?
I had studied my type of cancer and what to expect from the bi-lateral mastectomy and reconstruction process and recovery. While difficult, there were not too many surprises, except the pain from the surgery, which would be explained months later from the results of a new, state-of-the-art, genetics test – more specifically, a pharmacogenomics test.
My oncologist ordered this pharmacogenomics test to see how well my body would metabolize Tamoxifen, since it is now known that Tamoxifen will not work well for 1 out of 5 people.
The results showed I am one out of the five. I tested positive for gene variations, or mutations, which make me a poor metabolizer of Tamoxifen. Unfortunately, Tamoxifen is the only FDA approved anti-cancer drug for estrogen-based cancers in pre-menopausal women. Therefore, my oncologist doesn’t have another drug alternative at this time. However, with this knowledge, he is able to change my dosage in hopes I will metabolize enough of the drug to prevent reoccurrence.
There currently is little information about how much Tamoxifen is enough – so we’re monitoring the level of my side effects to help gauge how much of the drug I need to be effective. If I have side effects, we know I’m metabolizing some of the drug. We’re now looking for a balance between dealing with the side effects and feeling well enough to carry on daily life. If the side effects are too much, we can consider treating the side effects with more drugs before exploring more drastic options like removing my ovaries, which would open up other treatment options.
I have to say, I’ve never heard nor given thought to the concept of a drug prescribed by a doctor, not working as intended. By the way, this genetic test analyzed multiple genes responsible for metabolizing a number of drugs to determine how well they work for my particular genetic makeup.
This made me ask, what about the other drugs I take, are they metabolized by genes too? And what drugs might I have to take to manage the side effects of Tamoxifen? The answer was antidepressants. At times in the past, I was prescribed anti-depressants, and after a while I gave up on them because I didn’t get relief or they made me feel worse.
The test results for antidepressants showed I have additional gene mutations that impact the effectiveness of this class of drugs as well. I’m thankful to now have insight into why these drugs were ineffective and information regarding which antidepressants represent better choices should I need them later on.
After I was released from the hospital following my bi-lateral mastectomy and reconstruction, I experienced more than typical levels of pain, and the commonly prescribed codeine-based narcotics – Percocet and Lortab – did not reduce my pain to a manageable level. From the pharmacogenomics test results, I learned the same genes responsible for metabolizing Tamoxifen are also responsible for metabolizing codeine-based pain medications, making them less effective in reducing my pain. With this knowledge in advance of the surgery, an alternative pain medicine could have been chosen which would have been much more effective in managing the pain.
5. What would your advice be to anyone who’s just received a cancer diagnosis?
Don’t panic – take control of your own health. Replace fear with knowledge. Do your homework and speak up – you are your own best advocate.
Empower yourself by:
1) Learning as much about your cancer and treatment options as possible
2) Making lists of questions – don’t worry about asking too many
3) Getting second opinions
4) Considering genetic testing even if your doctor hasn’t suggested it
5) Stay positive. Rest when needed, eat well and exercise
6. How long have you been cancer free?
Almost nine months
7. What lessons did you learn from the experience?
I’ve learned to ask for and accept help from friends, family and sometimes people I don’t know very well. As a single mom, I truly could not have managed without the support. It has strengthened my relationships and has been rewarding to know so many people care.
I also learned to share my pharmacogenomics test results with all of my doctors so they know how I will respond to certain medications. I will never go into another surgery without my doctor knowing I don’t respond to codeine-based pain medications.
8. If you could send one message to all the Good Enough Mothers out there – what would it be?
I can think of many ‘feel good’ messages which would be appropriate to cover here, and I think many survivors are touching on those.
Instead, I’d like mothers to know about the impacts of genetic testing. For example, pharmacogenomics tests can help them and their families understand risks that can be passed on to their children.
My doctor ordered my test from Kailos Genetics and it proved to be very beneficial and gave me assurance in the treatment I was receiving. I want all mothers and women to also feel that same level of confidence in knowing they are taking control of their disease and ultimately their future.
Leslie Conway is 51 years old and lives in Huntsville, Alabama. She works hard and plays hard, and has always lived an active and healthy lifestyle. She’s a single mom and enjoys keeping up with her 10 year old son and their golden doodle, Sam. Leslie is VP of marketing for a high tech business communications company and enjoys volunteering in her community. She holds a BS in Electrical and Computer Engineering, a MS in Management, and a Masters in Business Administration.