Newly Diagnosed? What to do
SIX STEPS TO TAKE WHEN YOU ARE DIAGNOSED WITH MMMT OR CARCINOSARCOMA
By Diane Redington
You have just received a traumatic diagnosis of one of the rare gynecological carcinosarcomas. It could be ovarian, uterine or more rare—tubal or vaginal. Internet research indicates, “MMMT is a very rare and aggressive cancer with a poor prognosis.” After processing this information, it is time to take action.
Step 1: Assemble your support team.
Your doctor may have recommended immediate debulking surgery, which involves removing as much of the tumor as possible. Before agreeing to surgery, assemble your support team of those who love you and are capable of helping you through a complicated decision process. Ideally, include someone with a medical background who understand the medical system and can ask and interpret the answers to complex medical information. This will be the fight of your life.
Step 2: Assemble your medical team.
Because this is a rare cancer with few experts in the field, it can be misdiagnosed. The “gold standard” for a GCS diagnosis is a biopsy. The biopsy should be performed by a pathologist with extensive experience in women’s cancers. The less experienced the pathologist, the higher the chance of error.
Many GYN oncologists will only see one or two GCS cases a year, and that is not enough to be an expert. As a result, there is so much variation in treatment and the way patients respond. We need to see physicians who can look beyond guideline-based interventions and seek solutions that consider our unique characteristics. The ideal treatment team can be found in major cancer centers with expertise in women’s oncology, a center with research capabilities and knowledge of clinical trials.
Be prepared to travel and spend money to access the best care. Depending on where you live, you may have to travel to gain access to the best resources.
Audiotape each consultation so you can go back to listen, interpret and retain detailed information.
Step 3: Seek a second or third opinion.
If your insurance allows, visit major cancer centers for consultation as each center may offer different options. A second opinion is critical, especially since there are few physicians who have much experience in caring for patients with carcinosarcoma. Even if it is “out of network” for your insurance, consider taking the time for a second opinion.
Because there is no standard of care for GCS, it is generally treated like ovarian cancer and sometimes like a uterine sarcoma. Once you understand your treatment options, you can make an informed decision about your treatment team and begin treatment
Keep copies of all of your medical records and scans
Step 4: Choose your treatment team.
For me, it was three weeks between diagnosis and initiation of treatment. I started treatment with MD Anderson leading the team but was able to have chemo at my local Cancer Institute.
Step 5: Keep Looking for Answers.
Research new information about treatment and clinical trials. Talk to other women who are fighting this disease. Don’t hesitate to change treatment teams if you find a team with more innovation and knowledge or a clinical trial that is targeted for GCS cancer. Share information with other diagnosed women.
Unfortunately, this cancer has a high incidence of recurrence. Be prepared to move forward with the next treatment in the event that the initial treatment is unsuccessful or the cancer returns. Know the next steps.
Step 6: Never, Never, Never Give Up. Join our community as we work to find cures. Visit gcsproject.org and follow us on Twitter and on Facebook.
A Few Other Thoughts From Diane
- You must find a GYN Oncologist who has significant experience with GCS.
- As complex as the science is, you must be able to work with your treatment team and understand all your options.
- Obtain copies of your medical records—pathology reports, scans, everything!—and seek help to interpret the test results. Organize these.
- Seek a second or third opinion. Find a team in which you have confidence.
- Know what your insurance covers.
- Learn how to use your cell phone to record your medical visits. I’ve had success with the “Voice Memo” app on my cell phone.
- Listen again and take notes or type out the recording.