A defensive move: Removing the ovaries before cancer develops

Rinki Agarwal, MD, performs a laparoscopic oophorectomy (ovary removal) and salpingectomy (Fallopian tube removal) on the author. (PHOTO BY SUSAN KAHN)

Rinki Agarwal, MD, performs a laparoscopic oophorectomy (ovary removal) and salpingectomy (Fallopian tube removal) on the author. (PHOTO BY SUSAN KAHN)

BY SUSAN KEETER

The day my mother spiked a fever, we had no idea it was a symptom of ovarian cancer and that we would lose her just seven weeks later. Looking back, the only other possible symptom had been several months of unexplained bouts of nausea.

During the sad time of adjusting to the death of my mother, I began to worry about my own health. Five years before, my mammogram caught early stage breast cancer, and treatment left me virtually 100 percent cured. Was there a similar test for ovarian cancer that I didn’t know about?

When I asked my oncologist, he said, “I think you’re a good candidate for ovary removal, and if you choose to have the surgery, make sure they remove your Fallopian tubes as well. That cancer can show up in the tubes, as well.”

He referred me to Rinki Agarwal, MD, the Upstate gynecological oncologist who had been part of my mother’s cancer care team. She explained that the current tests for ovarian cancer are no better than a coin toss. “There are ultrasounds and blood tests for ovarian cancer, but they have only 60 percent accuracy,” she told me. “This cancer tends to develop on the surface of the ovaries, and we can’t see it.”

Each year in New York state, about 1,500 women — including 40 in Onondaga County — are diagnosed with ovarian cancer. About two-thirds die from the disease, according to statistics from the New York State Department of Health. Those at highest risk for the disease can reduce their chances of developing it by having their ovaries and Fallopian tubes surgically removed.

My family history made me a candidate for the surgery. Breast cancer affected both my maternal and paternal aunts, one of whom was diagnosed young and died of the disease. My maternal great-grandmother had ovarian cancer, like my mother. And, I had an early-stage breast cancer known as DCIS, ductal carcinoma in situ.

Our next step was to weigh the benefits of surgery against the possible health costs.

Agarwal explained that removing the ovaries means losing the estrogen and progesterone they produce, which increases the risk of osteoporosis, heart disease and dementia for women under age 60.

That was sobering.

However, since the ovaries gradually decrease hormone production and secretion, within about five years of menopause, these risks are no longer increased by ovary removal.

At the age of 56, my risk of ovarian cancer is in front of me, counseled Agarwal, with any benefit from ovary-produced hormones likely behind.

She scheduled a couple of tests, and almost 10 months after my mother’s death, Agarwal operated laparoscopically, through three tiny incisions in my abdomen. Some patients have lengthy recovery and significant pain, but I was fortunate. I had the surgery in the morning at Upstate; that evening, I watched my daughter’s dance rehearsal.

Who gets ovarian cancer?

Women in their 50s are at the greatest risk for ovarian cancer, but the overall risk falls on women between the ages of 30 and 60. The ovaries are the two almond-shaped organs on each side of the uterus.

Ovarian cancer symptoms

— Bloating

— Pelvic or abdominal pain

— Trouble eating or feeling full quickly

— Feeling the need to urinate urgently or often

Layout 1 Fatigue, pain during sex, upset stomach or heartburn, constipation, back pain and menstrual changes can also be symptoms

They may be vague, but if these symptoms exist daily for two to three weeks, a woman should seek gynecological care. Women of all ages are at risk, especially those with a family history of breast, colon or ovarian cancer. Early detection dramatically increases survival rates.

This article appears in the summer 2015 issue of Cancer Care magazine.

Posted in cancer, community, genetics, patient stories, surgery, women's health | Leave a comment

What you need to know about second opinions

Layout 1

A variety of doctors at Upstate care for patients who are diagnosed with cancer.

We tapped some of them to share insights on second opinions.

Here’s what they had to say:

1. You don’t need my permission to get a second opinion. And, don’t worry that you are betraying me or hurting my feelings by asking for one. “I don’t know one physician who would take this personally,” said Srinivas Vourganti, MD, a urologist at Upstate Medical University who advised firing any doctor who did not support a patient who did so.

Srinivas Vourganti, MD

Srinivas Vourganti, MD

2. I can probably suggest two or three doctors you might want to see for a second opinion, and my office staff might even be able to help schedule that appointment.

3. One of my partners can render a helpful second opinion. Just because we work together does not mean we think alike.

4. It may make sense to seek an opinion from a doctor who is not in the same specialty. An orthopedic surgeon may say you need surgery, for instance, while a rheumatologist may recommend physical therapy.

5. Second opinions should be automatic in situations where a doctor proposes an experimental procedure or a treatment that is unproven.

6. Check with your health insurer about coverage, because I have seen policies that won’t pay for second opinions at out-of-state facilities. Also, be prepared for the costs involved in traveling out of the area, since those are usually not reimbursed.

7. If what you really want is a different perspective, see a doctor from a different region of the country, where medical practice styles are likely to differ. Some institutions facilitate electronic second opinions so that patients don’t have to travel.

Robert Dunton, MD

Robert Dunton, MD

8. As your doctor, part of my job is to help you digest the information you find through your own research and decide whether a second opinion makes sense. “People come armed with a lot of information — not all of it good or pertinent,” said Robert Dunton, MD, chief of cardio-thoracic surgery at Upstate University Hospital. “I will tell you if I think you’re making a bad decision, but,” Dunton said, “if a patient picks an inferior choice knowing their options, that’s their prerogative.”

9. We’re in this together. If your gut is telling you to see what another doctor thinks, you are not going to feel right until you do.

10. You may not think you need a second opinion, but I may want you to get one. Perhaps you need surgery and there are different ways to do the operation. Another surgeon’s input could help determine the best approach for your case.

11. Even though they are not in your possession, every note and every slide that pertain to your care belong to you. If you want biopsy tissue to be reviewed, for instance, you can grant permission for it to be released. Just realize that gathering all of your records, particularly if you have seen multiple physicians, is likely to require a lot of your time.

Ajeet Gajra, MD

Ajeet Gajra, MD

12. If you face cancer, enlisting an oncologist may be more important than only obtaining a second opinion. An oncologist can help you manage your disease and your decisions. You’d be surprised how many people who receive a cancer diagnosis go straight to surgery or another treatment without considering the impact. “They get a procedure view, but they don’t get a life view. It’s not cancer management,” said Ajeet Gajra, MD, a medical oncologist at the Upstate Cancer Center.

13. There are instances where you may want a third opinion or tiebreaker. Consider the diagnosis of pectus excavatum, the abnormal development of the rib cage in which the breastbone caves inward. One doctor may recommend no intervention. Another may favor an elaborate insertion of metal bars into the chest. Additional input may help you make a decision.

14. If your second opinion differs considerably from the first, “it’s time to have an honest discussion with your provider,” said Gajra. “People need to understand there can be more than one valid approach.”

15. I would not want to lose you as a patient, but if you prefer the second doctor, I would tell you to get care where you feel most comfortable.

16. You may not need a second opinion. Many patients at the Upstate Cancer Center, particularly those with complex cancers, have their cases presented at a weekly multidisciplinary conference. This is where a variety of cancer and medical specialists discuss your situation and reach a consensus on your best options — so you essentially receive multiple professional opinions. This style of multidisciplinary care is becoming the gold standard.

17. If I’m the doctor providing a second opinion, I’ll do my best to give an unbiased opinion, regardless of whether I agree with the first doctor. If he or she has made mistakes, I’ll find a professional way to let you know.

18. I really do care what’s best for you. I’ll tell you if your condition warrants treatment elsewhere. Some rare conditions are best treated by highly specialized physicians.

Layout 119. I do not want to dampen your hopes, but I will be straight with you. You are probably hoping that another doctor will be able to tell you that you don’t have cancer, or that it is not so advanced, or that he or she has a miracle cure. That almost never happens.

20. Most of the time after a patient gets a second opinion, there is no change in his or her treatment plan. However, they feel as if they are better educated — and that’s a good thing.

This article appears in the summer 2015 issue of Cancer Care magazine.

Posted in cancer, community, health care, hospital, surgery | Leave a comment

6 things to check before swallowing that pill

What do you do when your doctor recommends an expensive medication?

Pharmacist Andrew Burgdorf from the Upstate Cancer Center offers this advice:

  • Andrew Burgdorf, PharmD

    Andrew Burgdorf, PharmD

    Find out how much of the bill your health insurer will pay, so you know how much you will owe. Upstate provides financial counselors to help patients understand expenses.

  • Ask whether the drug manufacturer offers co-pay assistance, and explore options through organizations such as the American Cancer Society or the Cancer Financial Assistance Coalition.
  • Think twice about purchasing more than a one-month supply at a time. If your medication needs change, you cannot return the drugs for a refund.
  • Double-check the instructions regarding dosage and frequency and whether the pills should be taken with food or on an empty stomach.
  • Make sure your health care provider and pharmacist know about any supplements you take, including fish oil, since some supplements could reduce the effectiveness of some cancer drugs.
  • Ask your health care provider and/or pharmacist what side effects are to be expected, what symptoms may signal an adverse reaction — and what to do if you experience a reaction.

Pharmacists such as Burgdorf, who specialize in oncology, can answer more specific questions.

This article appears in the summer 2015 issue of Cancer Care magazine.

 

Posted in cancer, community, health care, pharmacy, public health | Leave a comment

What was hair today is gone tomorrow — to raise money to fight pediatric cancer

cB7fwZzE_KZ-lBp_53oaGpdJ0BHYMVtzUT9QThSv3-o

Shown before the St. Baldrick’s event are (from left) Russell Kincaid, Tracy Kalinowski, Clare Rauch, Sharon Huard, Alex Kalinowski, Christopher White and Michelle Bergquist. All are Upstate employees except Alex, who is Tracy Kalinowski’s son.

StBaldricksAfter001 (1)

Shown after getting their heads shaved for St. Baldrick’s are (from left) Tracy Kalinowski, Russell Kincaid, Clare Rauch, Sharon Huard, Alex Kalinowski, Christopher White and Michelle Bergquist.

Several Upstate employees were among the 570 people having their heads shaved at Kitty Hoynes Irish Pub & Restaurant in Syracuse on March 1 to raise money for the St. Baldrick’s Foundation.

The Upstate Golisano Children’s Hospital has received grants from St. Baldrick’s that pay for research to find cures for childhood cancers and that help survivors live long, healthy lives. Donations are still coming in, but the event at Kitty Hoynes this year raised about $450,000.

Pictured before and after the St. Baldrick’s event are Tracy Kalinowski, who works in the pediatric infusion center; Russell Kincaid, from radiation oncology; Clare Rauch, senior assistant librarian; Sharon Huard, who works in student affairs; Alex Kalinowski, son of Tracy Kalinowski; Christopher White, who works in the pediatric infusion center; and Michelle Bergquist, who works in the library.

This article appears in the summer 2015 issue of Cancer Care magazine. 

Posted in cancer, community, entertainment, Golisano, volunteers | Leave a comment

Electronic cigarette use soars among teen smokers

tobacco

While traditional cigarette smoking declines among U.S. high school students, and stays the same among middle schoolers, the increasing use of electronic cigarettes and water pipes called hookahs means that tobacco use among teens remains steady.

The use of electronic cigarettes by teens is soaring, causing concern among health experts who question the safety of the battery-powered devices and complain that they are creating a new generation of nicotine addicts.

E-cigarettes create an inhalable vapor by heating liquid nicotine – in flavors such as candy or fruit – in a disposable cartridge or refillable tank. The vapor lacks the tar of traditional cigarette smoke but still contains cancer-causing chemicals, said Leslie Kohman, MD, a lung surgeon and medical director of the Upstate Cancer Center. While the U.S. Food and Drug Administration has declared the main component of e-cigarettes, propylene glycol, safe for eating, she said, “Inhaling it is very different because the lungs absorb things in a very different way than the intestinal tract.”

smoke page 10Kohman is concerned about the lack of regulation, too. “E-cigarettes are manufactured in various locations around the world with no manufacturing controls, no safety controls whatsoever,” she said. The FDA has proposed regulations, and a group of health organizations in New York state is trying to add e-cigarettes to the state’s Clean Indoor Air Act so the devices would be prohibited anywhere cigarettes are prohibited.

Also, since an 18-month-old boy from the Albany area died after swallowing a small amount of liquid nicotine, New York state now requires childproof packaging of liquid nicotine.

The sale of tobacco products, including e-cigarettes and liquid nicotine, to those younger than 18 years of age is illegal in New York state. Some local jurisdictions have set the age higher: In Onondaga County, where Upstate Medical University is located, the minimum age is 19. In New York City, it’s 21.

Data from the U.S. Centers for Disease Control and Prevention tracks smoking rates among high school and middle school students, revealing underage tobacco use. Experts fear that three of every four teen smokers will continue into adulthood because almost 90 percent of adult smokers say they first tried cigarettes as teens.

This article appears in the summer 2015 issue of Cancer Care magazine.

Hear Kohman’s radio interview about the dangers of e-cigarettes.

Posted in cancer, community, public health | Leave a comment

Caring for a child who has cancer, and the siblings who do not

Aliya Hafeez, MD

Aliya Hafeez, MD

Psychiatrist Aliya Hafeez, MD answers a question with which many parents grapple after one child is diagnosed with cancer…

Q: My middle child has been diagnosed with leukemia, so much of my energy is focused on her treatment. What can I do so I don’t lose touch with my older and younger daughters during this time? They are 16, 10 and 3.

A: A good place to begin would be to ask your daughters how they feel that their sister is sick. Also ask them how they feel about all your attention and energy going into caring for her.

Offer to spend some time individually with each of your other children along with your sick daughter. That way maybe they can become your little helper in taking care of her.

If time allows maybe a date night with each individual child would be helpful in reconnecting you both.

Aliya Hafeez, MD, is the chief psycho-oncologist at the Upstate Cancer Center and a cancer survivor. Reach her at 315-464-3615.

This article appears in the summer 2015 issue of Cancer Care magazine.

Posted in cancer, community, mental health, psychiatry | Leave a comment

How a tumor is diagnosed

As serious as it is, cancer is usually not an emergency, urologic oncologist Srinivas Vourganti, MD, told visitors to the Upstate Cancer Center this spring.

Srinivas Vourganti, MD

Srinivas Vourganti, MD

A cancer diagnosis is a step-by-step process that has to be complete before exploring treatment options. If you rush to judgment with incomplete information, you may face unnecessary treatments or therapies that don’t jibe with your beliefs.

Vourganti said to think of a suspicious lump as a dog barking in your back yard. The bark could belong to a variety of dogs, from a toy poodle wearing a collar to a rottweiler foaming at the mouth or something else entirely. You won’t know for sure until you do some research.

Depending on the type of cancer suspected, that research will include a series of medical tests. If cancer is found, doctors work with laboratory specialists on TNM staging. This takes into account the tumor size (T), whether cancer has spread to the lymph nodes (N) and whether it has spread elsewhere, or metastasized (M).

They use TNM staging and other factors to help create an individual treatment plan.

This article appears in the summer 2015 issue of Cancer Care magazine.

Posted in cancer, research, urology | Leave a comment

Soothing nourishment for those with mouth sores

This recipe for milk and rice soup from the “Betty Crocker Living With Cancer Cookbook” offers soothing nourishment to those with mouth sores. And because milk is added to bananas and rice in this dish, it can be an effective remedy for diarrhea as well.

Ingredients

1 cup uncooked regular long-grain rice

2 cups water

2 bananas

2½ cups skim milk

2 tablespoons sugar

Preparation

In a 2-quart saucepan, heat rice and water to boiling. Reduce heat to low; cover and simmer about 15 minutes or until water is absorbed and rice is tender. Let stand about 10 minutes or until cool enough to eat, or refrigerate.

In medium bowl, completely mash bananas. Stir in cooked rice, milk and sugar. Serve immediately. Cover and refrigerate any remaining soup.

Nutritional information

This recipe makes four servings. One serving contains: 310 calories, ½ gram fat, zero grams cholesterol, 70 milligrams sodium, 500 milligrams potassium, 67 grams carbohydrates, 9 grams protein and 2 grams dietary fiber.

This article appears in the summer 2015 issue of Cancer Care magazine.

 

 

Posted in cancer, community, nutrition, recipe | Leave a comment

Cart provides comfort items to patients in Cancer Center

Brandon Spillett, of Syracuse, an Upstate volunteer, shows the Comfort Cart, which offers items to patients at the Upstate Cancer Center. (PHOTO BY DEBBIE REXINE)

Volunteers at the Upstate Cancer Center staff a cart full of comfort items that they make available to outpatients and inpatients. A Kobalt tool cart was purchased with donations from Lowe’s Home Improvement Store and Room 2 Smile, an organization started by Brandon Spillett, of Syracuse, after his father, Daniel, died in 2005. Voss Signs wrapped the cart with a large vinyl decal so that the cart blends in with the center’s theme of nature. Spillett is an Upstate volunteer.

On top of the cart: Cancer Care magazine, brochures about services at the Upstate Cancer Center.

Top drawer: lip balm, hand sanitizer, personal tissue packs, blank greeting cards, toothbrush-and-toothpaste packs and mouthwash.

Second drawer: American Cancer Society information and referral forms for various services the society makes available.

Third drawer: decks of playing cards, Crazy 8’s and Go Fish, plus paperback sudoku and crossword puzzle books.

Fourth drawer: small water bottles, hand lotion, throat lozenges

Bottom drawer: a dozen Kindles, loaded with periodicals, to lend to patients.

This article appears in the summer 2015 issue of Cancer Care magazine.

 

Posted in cancer, community, volunteers | Leave a comment

A new perspective: Hodgkin lymphoma changed her body and her mind

Emily Breclaw took some time off during her cancer treatment but returned to swimming with the Liverpool Jets during her sound round of treatment. (PHOTO BY SUSAN KAHN)

Emily Breclaw took some time off during her cancer treatment but returned to swimming with the Liverpool Jets during her sound round of treatment. (PHOTO BY SUSAN KAHN)

BY AMBER SMITH

Emily Breclaw underwent four rounds of chemotherapy, each lasting a couple week. She deal with three day of nausea, and soon after that subsided, and soon after that subsided, she had whole-body muscle aches with which to content, but she said “I felt better going through chemo than I did for the eight months before.”

Breclaw, 16, a sophomore at East Syracuse Minoa High School and a competitive swimmer, was sick for almost a year. She would get tired. She had low-grade fevers every night for five months, and night sweats. She would get out of breath. A blood test revealed anemia; iron supplements did not help. Breclaw struggled to concentrate and sometimes fell asleep in class.

Breclaw says that as a cancer survivor, she has a new perspective on what's important in life. (PHOTO BY SUSAN KAHN)

Breclaw says that as a cancer survivor, she has a new perspective on what’s important in life. (PHOTO BY SUSAN KAHN)

“I would have to do my homework standing up because otherwise I would fall asleep,” she recalled.

Over the summer, she developed stomachaches and pain in her ribs. She also dealt with itchiness, and her trouble breathing got worse. Her family doctor ordered a chest X-ray and located a mass the size of an orange. He sent Breclaw to Upstate Golisano Children’s Hospital, where pediatric oncologist Gloria Kennedy, MD, began caring for her.

She was admitted to the hospital that Friday, Oct. 24. She had a biopsy the next day.

When Breclaw learned she had cancer, she was not surprised. “I kind of knew it was coming,” she said. “You know how some people say they kind of knew? Something in me just knew.”

The next week was full of medical appointments to prepare Breclaw and her parents for the chemotherapy that began Nov. 4. She was found to have Hodgkin lymphoma, a cancer that begins in the white blood cells. The American Cancer Society says Hodgkin lymphoma accounts for about 3 percent of childhood cancers.

Breclaw missed a lot of school and a lot of swimming. She returned to classes in January, having lost her hair during treatment. “I went back with a hat, and people were OK with it. They didn’t care at all that I didn’t have any hair,” she said. “A few weeks after that, I started getting a little hair. I didn’t wear a hat, and everybody was OK with that, too.”

She returned to school with a more mature way of thinking. Before cancer, she was shy, prone to worry what people thought of her and quick to complain about trivial matters.

Now, as a cancer survivor, Breclaw has confidence. Little things that used to concern her are unimportant. And, she has a perspective that causes her to think before complaining. “I stop and think about the struggles I endured and the struggles that some children are still enduring.”

SymptomsLayout 1

An enlarged lymph node is the most common symptom of Hodgkin lymphoma, often appearing as a lump or bump on the side of the neck, in the armpit or groin. Other symptoms people may experience include fevers that come and go, drenching night sweats, unexplained weight loss, exhaustion, itchiness and loss of appetite. (Source: American Cancer Society)

This article appears in the summer 2015 issue of Cancer Care magazine, which features Breclaw on its cover.

Posted in cancer, community, Golisano, hospital, patient stories | Leave a comment