Our local newspaper featured this article on me and my Journey. January is Cervical Health Awareness Month
Tue Jan 04, 2011, 04:27 PM EST
Karen B of Lake Park knows firsthand about cervical cancer which about 11,000 American women will learn they have this year, and nearly 4,000 will die from an advanced form of the disease.
“I was diagnosed with stage 3b endocervical cancer in April 2010,” she said. “My life has completely changed. I have gone through radiation and chemotherapy. I believe no woman should ever have to go through what I have been through. I also have a 5-year-old son (Carter). So I am very passionate about wanting to help other women who do not know they are at risk and how important it is to (have) check-ups.
“... When I received my diagnosis, I became a member of the NCCC (National Cervical Cancer Coalition) for information and support. There was a lady on there that was such an encouragement to me; she had been cancer-free two years. In July 2010 her cervical cancer was back; she died this past week due to this horrible disease,” Karen e-mailed on Dec. 2.
In an interview Monday at The Valdosta Daily Times, the Tampa, Fla., native talked about the trauma she has been through in battling the disease:
“I thought my symptoms began in November 2009 with low back pain. At 3 in the morning, I would wake up with excruciating pain.”
Karen had two doctor appointments the following month and was diagnosed with IBS (Irritable Bowel Syndrome).
“I wasn’t satisfied because when I looked that up ... it wasn’t my true symptoms,” Karen said.
She and her family went on vacation last January to Myrtle Beach, S.C.
“The trip was horrible because I had to spend most of the trip in the bed because I was in such pain. We ended up leaving earlier than we needed to. By this time, my symptoms have gotten worse. I had abnormal bleeding and constantly felt like I had to go (use the bathroom) but couldn’t.”
Around Jan. 19, she went to a walk-in clinic in Valdosta.
“I was in tears (because) I was in so much pain. They thought I needed to go to a gyn (gynecologist). I made an appointment for Jan. 22, but five minutes before my appointment, they had to cancel. At that point, I was ready to quit seeking out medical care, but it didn’t get any better. It got worse.”
On Jan. 26, Karen returned to the walk-in clinic, and the physician sent her straight to the emergency room at South Georgia Medical Center.
“They did all the right tests ... pelvic ultrasound and MRI. After being there most of the day, the doctor diagnosed me with degenerative arthritis,” she said, breaking down into tears.
“I questioned her (about) the bleeding and urgency, and she said I would need to follow up with a specialist — a urologist. Needless to say, she is no longer there (at the hospital).
“The MRI showed a bulging disc in the same spot as the tumor. At that point, I believed that was probably what the problem was based on the testing and MRI.”
Karen compared her pain to a “raw sore on the inside ... pain such as if you cut yourself and have a raw sore.”
“I took the medicine prescribed, and I tried to on with my everyday life, and still I couldn’t,” she said.
Karen made an appointment with her family doctor, but he wasn’t available and she saw his wife, Dr. Nirmala Padhiar.
“She was the first person who actually sat down and listened to me and asked questions,” Karen said. “After we talked, she came to the conclusion I needed a pelvic exam. When I went back for my results (in February), I was told it was abnormal. She took up additional time explaining what treatments could be done. She said I would have to go to a gyn. She made sure my mental state was good before I left.”
Karen had no insurance, but Dr. Padhiar had told her that was no reason not to get treatment. Karen learned of Breast and Cervical Cancer Programs (BCCP), screening programs for women age 40-64 who are uninsured or under-insured to detect early cancer and pre-cancers of the breast and cervix. Trained nurses and nurse practitioners provide clinical breast exams and PAP smears. Referrals for mammograms are made to local providers. In the event of positive or questionable findings, women are referred to their choice of local providers. To help defray the cost of treatment of breast or cervical cancer, Women’s Health Medicaid can be obtained if eligibility requirements are met. This program lowers the death rate from breast and cervical cancer by early detection.
“I applied for the program but they couldn’t do my colposcopy (another test to see if it’s truly cancer) until April 13. It was February. I went ahead and made an appointment with a gyn, and they basically reviewed my hospital results with me. They truly did not believe I had cancer.”
Karen called the health department and asked if she could be seen sooner than April 13, but they were booked up. They called on April 8 and said they would pay for her to see her own doctor the next day. But her doctor couldn’t do the colposcopy because of the irregular bleeding, but she could do an endometrial biopsy (taking a small sample of the lining of the uterus (endometrium). The sample is looked at under a microscope for abnormal cells.) Again, there was a complication.
“She wasn’t able to do it because of the severity of my pain, but she did get endocervial cells. On April 15, I got the call it was cancer,” she said, breaking down into tears.
Karen was 44 years old at the time.
“I was told if you are going to get diagnosed with cancer, this is the cancer you want because it is a slow-growing cancer, and they could probably take care of it by doing a hysterectomy. At the gyn practice, I had not seen an M.D. yet. When I saw the medical doctor, she was going to schedule me for a cone biopsy. I told her, ‘No one has taken me seriously. I can’t function on a daily basis with the pain I have.’ The M.D. said she would like to do her own exam. Upon her exam, she determined I didn’t need anything, but to be sent to a specialist. She was to schedule me for a CT scan here, and in Savannah with a gyn oncologist.”
Several days went by and no CT was scheduled. Karen said when she called, she was told she would have to pay upfront for the CT because she had no insurance.
“I told them they needed to call SGMC to schedule it, and they did.”
Karen’s message is, “You need to take control of your own health and not wait on anybody.”
On April 29 she went to Savannah and saw the gyn oncologist.
“He knew exactly what kind of cancer I had ... It was endocervical cancer. He said it was Stage 3b which means it had spread to the pelvic wall. Surgery was out of the question because they could not get a clear measure of what it encompassed.
“Come to find out, I’ve had the cancer for years,” she said, even as early as 2004.
Karen stressed the need for getting copies of Pap smear reports and making sure endocervical cells are listed. Endocervical cells are located high in the T-zone of the cervix, she said, and aren’t always collected in a Pap smear. In other words, a Pap smear could come back normal, and the woman could be carrying endocervical cancer as she had been, she said.
The American Society for Colposcopy and Cervical Cytology (ASCC) patient management guidelines recommend a repeat pap test in 12 months for women if the pap test is negative but lacks an adequate endocervical component.
Karen learned she was pregnant in 2004, and miscarried two weeks after her exam.
“The weekend I miscarried, I got a letter in the mail saying I had an abnormal Pap smear. So I have a biopsy done. Because my cervix didn’t match my Pap, he took two biopsies, and they came back normal. Several Paps after, they were normal. I changed doctors.
“No one explained to me about endocervical cells ... On your Pap, make sure it says endocervical cells were present (for examination). If not, the next year you need to mention it to your healthcare provider because it is through the endocervical cells that endocervial cancer can be detected.
“I admit I was at fault,” said Karen, saying she had failed to get a Pap smear from July 2005 until February 2010. “There was no excuse. I was too busy. Cancer didn’t run in my family; heart disease did. I was actually going to the doctor for that.”
Back in Savannah when the gyn oncologist diagnosed her cancer, staged it and told of the treatment plan of chemo and radiation, Karen said she sat there “bawling.”
“This can be cured,” the physician assured her. “This can be healed.”
To which she replied, “You don’t get it. I wanted surgery (because if you have a hysterectomy, you can’t get cancer in that area again, but he couldn’t do that because it had spread).
“It’s so important that women know you have to take your health into your own hands,” she said, noting that her cancer was staged in April two months after the abnormal Pap, and her treatments didn’t start until the end of May, a whole month of waiting.
“When you go through cancer, your mental state is so important. Walking out with that treatment plan, (I determined) ‘OK, I do this and I will be cured.’ You couldn’t let the ‘what-ifs’ come into your mind. I had to make it: I have a 5-year-old at home,” said Karen, also mother to Christina Shealey, 24, and Chris Byrley, 21.
“Fighting cancer is like putting on your boxing gloves and running shoes and not stopping until you’re through. The treatments are very hard,” she added.
Karen was given radiation and chemo treatments at the same time: five rounds of chemo and 29 outpatient and two inpatients implants at SGMC.
“We have an awesome cancer center ... from Yolanda (at the reception desk) to the radiologists and lab techs of their staff: They are so encouraging and empowering. There is no room for negativity. I couldn’t have had a better doctor than my chemo doctor, Dr. (Nagender) Mankan.”
Stage 3b endocervical cancer has a 35 percent survival rate, she said.
“As of today, I am cancer free,” she said after a recent check-up.
But every three months during the first year, she must go to Savannah to be checked. After the first year as a precautionary measure, she must get a Pap and chest X-ray every four months. And then there’s the five-year window of being cancer-free before she can rest easily.
Despite everything she’s been through, Karen said, “I feel like I have been blessed beyond measure. I ended up with a cancer (with treatments) funded by the state (and one that was curable). If I had discovered the cancer earlier, I would have had a hysterectomy and wouldn’t have my 5-year-old son. My husband (Wayne), who lost his (construction) job this summer, was able to stay home and take care of me and our 5-year-old.”
Karen, who is self-employed, also noted she lost her largest-paying client, but her family was able to weather the financial storm.
