When You Get That Call…

callI hope you will never get “that” call…the one telling you that your mammogram shows something suspicious for breast cancer. But if you do, here are some steps you can take to make the going a little easier from someone who got”that”call twice.

This call is most likely to come from one of two sources or both; the doctor who referred you for your mammogram or the center where you had your mammogram.

The first time around for me, twelve+ years ago, it was my GYN practitioner making the call. Stunned, I was not able to ask more than what do I do now. She recommended a breast surgeon she regularly referred patients to when they had a questionable mammogram. I got off the phone, made a call to the surgeon she suggested and made an appointment. The earliest he could see me was two weeks away. I took it and wondered who I could talk to about the rising fear I was feeling as I hung up the phone.

My friends became my support system during those two weeks. My internist and my GYN offered the usual words of encouragement.  They reminded me that most breast lumps are benign; nothing could be felt in my breast exam and, even if it were the worst case scenario…breast cancer, it was small and caught early in a mammogram.

It was six weeks of anxiety and multiple tests from the time I got “that” call before I got my answer…breast cancer.

There was the two week wait for the doctor’s appointment, followed by the wait for an ultrasound and the wait for results that proved inconclusive. Then there was the wait for an ultrasound guided needle biopsy and the wait for results…again inconclusive. Then wait for a surgical biopsy and wait for results.

The second time around I was an educated consumer when I got “that” call. So, the  time from a suspicious mammogram to confirmation of a new primary breast cancer in the opposite breast was less than two weeks.

This is what I learned during the 10 years between the first call and the second call:

  • After you get that call, allow yourself time to get a hold of your emotions. Tell your doctor or whoever calls you that you will get back to them with questions and to discuss next steps when you have had time to digest what they have just told you.
  • When you have calmed down to the point where you can start making a plan for getting care, enlist the help of a family member or friend who is a breast cancer survivor, or someone you are close to who is level-headed and not squeamish about navigating the treatment system and ask them to function as your navigator.
  • When you call your doctor back, remember that while it is great to have faith and trust in your doctor when it comes to a referral, know that you need to do your homework. Ask your doctor for:
    • A referral to a few doctors affiliated with a cancer treatment center or a major hospital with a track record of treating numbers of breast cancer cases. Once you have those names, get on the Internet, go to the treatment center of hospital the doctors are affiliated with and review their credentials including:
      • Is he or she a general surgeon who does breast cancer surgery, or is he or she a surgeon who specializes in breast cancer surgery, or has done a residency in breast cancer at a hospital that specializes in cancer treatment?
      • Is he or she Board Certified in his or her specialty?
      • Does he or she accept your insurance coverage?
  • If you are not satisfied with what you read about these referrals, contact  a major cancer center in your area and check with their physician’s referral service.
  • Make an appointment with a physician; take your navigator; and pay attention to the attitude of the hospital or office staff. Keep track of waiting time before seeing the doctor and the time the doctor spends with you.

Be sure you are comfortable with his or her attitude during your visit.

  • Go prepared with a list of questions. Have your navigator take notes and ask questions, from your list, that you may have forgotten to ask. Be sure to find out if all additional testing can be done in one place and done quickly, or if the doctor will need to refer you out to a few different facilities for additional testing. This can be one of the determining factors in your choice of physicians and hospitals or treatment centers.
  • If you have concerns about this physician and where he or she is affiliated, make an appointment with another breast surgeon.
  • Once you are comfortable that you have the right doctor, make the appointments for the needed tests, making sure first, that the facility providing the test accepts your insurance.
  • If your tests confirm you have breast cancer, don’t leave your follow up meeting with your surgeon until you understand your choices for surgical treatment and what each procedure entails.
  • If you have a choice…mastectomy or lumpectomy, take time to once again do your homework. Research what is involved in each surgical treatment to determine which one you feel is right for you.

During this stressful, decision making time be good to yourself.  If you can, incorporate recreation and visiting with family and friends to reduce stress and take your mind off what you are going through.

Choose wisely who you share your situation with. Some people can and will say things that range from dumb to unkind, which will only increase your stress.

When the after midnight “What ifs” hit, remember you are not alone. Write down your fears and promise yourself you will address them the next day. Then try to sleep. If that doesn’t work, there are 24-hour hot-lines with breast cancer survivors on the other end of the line to talk you through, such as Breast Cancer Network of Strength – Toll-Free Hotline (English): 1-800-221-2141.

For more about navigating breast cancer, go to www.noboobsaboutit.org

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