Tuesday, September 24, 2013

Just Checking...

I made an appointment with the Huntsman Cancer Institute at IMC to speak with Dr. Nibley with the Utah Cancer Specialist Group.  I just wanted to see what else I might be able to do to reduce my risk of any cancers.  Should I have a yearly body scan to detect any cancers that might show up in my brain or lungs (like my mother had this last time)?  What are the symptoms of a brain tumor anyway?  I wanted to double check that indeed I didn't need any breast imaging, since I have an implant in there now.  What did they think about me taking an estrogen supplement? 

William E. Nibley, M.D.

Dr. Nibley earned his medical degree in 1991 from the George Washington University School of Medicine. He completed an internship and residency in Internal Medicine followed by a fellowship in Hematology/Oncology at the University of Utah School of Medicine. He is a member of the clinical faculty in the Division of Hematology/Oncology at the University of Utah. Dr. Nibley is board certified in Internal Medicine and Medical Oncology and board eligible in Hematology.

I went back and this practice has a mid-level provider speak with you first to find out your history and ask basic questions so they can brief the physician before meeting with you.  Anne Marceau, NP, came in to meet with me.  She was so nice and listened to my concerns. 

Anne Marceau, NP

Ms. Marceau, NP, earned a bachelor's degree in Nursing in 1988 from Fairfield University in Connecticut. She earned a master's degree in Nursing and a Nurse Practitioner Certification from Massachusetts General Hospital Institute for Health Professionals in 1997. Most of her nursing career has been in Oncology and Bone Marrow Transplant. She worked with the Utah Blood and Marrow Transplant Program at University of Utah Health Sciences Center, Primary Children's Medical Center and LDS Hospital. She is board certified as an Adult Nurse Practitioner.

After we spoke, she briefed Dr. Nibley and he came in.

Basically, they both said:
-I do not need any breast imaging since I have no breast tissue.  I should still do a self-breast exam each month.  This will most likely be the way that a tumor would be detected if one grows in the breast tissue that remains.

-They didn't think it would be beneficial to have a body scan or chest scan for lung cancer or brain scan for brain cancer.  They said that if I had the scan one day, then a brain tumor could form right after that.   Once they form they are quickly detected within 2 weeks because it's obvious that something is wrong.  Symptoms possibly include a headache that comes and goes, stroke-like symptoms, nausea and vomiting, disturbed visual patterns and seizures.  Anne said you might do abnormal acts like put your cell phone in the toaster.  And the treatment is the same for most brain tumors... you need surgery.  As for lung cancer, outside of smoking a leading cause is from radon gas.  He suggested that I have my home tested for radon just because it's a good idea to do so and it would reduce that risk factor.

-Dr. Nibley asked me how my body is reacting to not producing estrogen from my ovaries that were removed.  I said that I didn't notice BIG disruptions in my life.  I do get warm and toasty at times, and sometimes I feel a heaviness when I am stressed.  I guess I'd have to ask Dan if my behavior is altered and if I am more impatient.  Dr. Nibley suggested that estrogen does feed cancers, and the benefit of a low-dose estrogen would be for heart health, but perhaps on the conservative side, I should not take an estrogen supplement. I can monitor my heart health through other means.  Estrogen also helps with Bone Density.  When women go through menopause their bone density starts to decline.  So, since I am getting about a 10 year jump start on my bone density decline, I should be certain to take Calcium and Vit D supplements.  Anne mentioned that most pills don't have enough Calcium in just one pill, so I should be aware that I need 1500mg of Vitamin C each day and 800 units of Vit D (which helps in the calcium's absorption in the body).  That was good to note, since I was only taking one pill each day and I actually need to take 3 of the pill that I am currently taking.  (I should research to see what other calcium options are available.)  He also said that I need to do weight bearing exercise 3 times a week to keep my bones strong and healthy.

-Dr. Nibley handed me a print-out of the NCCN Guidelines for  Hereditary Breast and/or Ovarian Cancer Syndrome Version 4.2013.  He told me that he understands that I am a little "anxious" about reducing my risk of breast cancer, especially since I recently underwent the preventative surgeries and my mother passed recently.  He said that according to the guidelines, I really have done everything that I can.  I now have a risk that is that of the normal population or less even.  ( I did just notice a footnote that says "Shared genetic susceptibility to breast cancer, brain tumors, and Fanconi anemia.  Quickly checking into that a bit more.  "...data suggest that FA patients with biallelic mutations in BRCA2 are at markedly high risk of acute leukemia during the first 5 years of life. Presence of biallelic BRCA2 mutations clearly mandates more intensive surveillance of the marrow and possibly “prophylactic” hematopoietic stem cell (HSC) transplantation prior to the development of myelodysplasia and AML. Further, FA patients who are compound heterozygotes for BRCA2 mutations are at high risk of solid tumors.17,18 Of the 14 patients with biallelic BRCA2 mutations in the IFAR database, 5 died of early onset brain tumors, primarily medulloblastomas,17 and 3 developed Wilms tumors." http://bloodjournal.hematologylibrary.org/content/103/8/3226.full.html )

-The NCCN Guidelines state that I have a possibly higher risk for pancreatic cancer, but there isn't screening for that, and a higher risk for melanoma.  He suggested that I get a yearly check-up from a dermatologist.

Other than that, Dr. Nibley said that I really have done all the preventative measures that I need to.  He was a very nice doctor and listened and explained everything well.  I appreciate Anne and Dr. Nibley's time and care.

I wish a yearly screening could tell me that I'll be okay...

What things can I do that we talked about?
-Regular self-breast exams to detect breast cancer
-Weight bearing exercise 3 times or more a week for bone health
-Take 1500 mg Vit C and 800units Vit D daily
-Test home for radon gas


  1. Hi Lisa, You might want to do some reading on calcium supplements. I've read a few times that they are now finding that they cause heart troubles. I quit taking mine and just try to get my calcium naturally. It's hard cause I hate milk!

  2. Lisa
    What an ordeal you have been through! Sending hugs and prayers! Hang in there!