Genetic testing leads to diagnosis for rare Von Hippel Lindau disease

Haley

Haley Miller and her daughter, Layla

 

Haley Miller, now a wife and mother of two, went to her first genetic testing appointment at age 20.

“It was around 1999 and genetic testing had just been developed. As soon as it had, the doctor recommended our whole family go, so we did,” Miller says.

Most families don’t just think of setting up genetic testing, but when Miller’s father was diagnosed and eventually passed away from complications of Von Hippel Lindau, their family knew it could only help.

Von Hippel Lindau (VHL) is an inherited disorder where those affected experience abnormal growth of tumors and cysts throughout the body. The tumors can be both benign and cancerous and many of them can be found in the adrenal glands, kidneys, pancreas and central nervous system. Those affected by VHL undergo body scans each year to check for progression and changes in the disorder. Continue reading

New microscope offers hope for tumor patients

New technology series

University of Michigan's Dr. Daniel Orringer with the new SRS microscope which promises to make brain tumor and other cancer surgeries safer and more efficient

University of Michigan’s Dr. Daniel Orringer with the new SRS microscope which promises to make brain tumor and other cancer surgeries safer and more efficient

Here at the University of Michigan we are testing a new microscope that will radically change brain tumor surgery—making it safer and more efficient. So far, we have used the microscope on tissues from 89 patients with great success.

Timing and location are important

One of the most difficult things for a brain surgeon is figuring out exactly where a brain tumor starts and stops because brain tumor tissue can be hard to distinguish from the rest of the brain. The new stimulated Raman scattering (SRS) microscope allows us to see the edges of a tumor in a few seconds instead of waiting the 30-45 minutes it usually takes for a frozen tumor section to be developed.

Right now, we are using the microscope on an experimental basis through grants from the National Institutes of Health and the University of Michigan Translational Research and Commercialization for Life Sciences Program. We are using the microscope almost exclusively on neurosurgical cases. I’m also collaborating with Matt Spector, who is a head and neck surgeon, to look at squamous cell carcinoma.  Continue reading

Top 12 reasons to be thankful

thoughtful man.fwWhile looking through old copies of Progress, the forerunner to Thrive, we found the following article, written by an anonymous cancer patient in 1998. The thoughts expressed on reasons to be thankful are as fresh today as they were 15 years ago…

This is the time of year when I find myself feeling moments of depression and fear about what might happen in the future. After expending a lot of time and energy, it hit me that as a cancer patient, I had some special things to be thankful for. Here are my top 12 reasons for being thankful this holiday season:

  1. When you have cancer, hardly anyone ever gets mad at you and if they do, they get over it very fast.
  2. When you have cancer, casual friends disappear and good friends become great friends. Continue reading

Keeping track of medications

Tips and tools to help you keep track of your medicine

manage meds2Keeping track of medications and remembering whether a medication has been taken can be a daunting task. Many tools exist that can help you with this process, but what’s important is to develop a system that works best for you.

The following tools — some of which are available in the U-M Comprehensive Cancer Center’s  patient tool kit — may help you:

  • A medication chart describing the medications, the reason you’re taking them and the time they should be taken.
  • A calendar that lists when to take medications each day.
  • A check-off list allowing you to check off when a medication is taken (even better if it allows you to track side effects or make other notes to monitor how the medication is working for you). Continue reading

Best in distractions: at the movies

Almost nothing beats a good movie as a way to distract and de-stress. Whether you’re drawn to suspense, science fiction, giggles and laughs, or music, there are plenty of movies and DVDs to choose from. As part of our on-going series on the best in distractions, our Facebook friends have made these recommendations:BestinMovies

Hamid: Star Trek 2: The Wrath of Khan, even after all these years

Sarah: The Great Outdoors provided the laughter to help ease tough times

Here are some other recommendations:

Bourne Identity (a series of four, so far)

Block Party

Bringing Up Baby

Election Continue reading

Who’s on Your Case?

Descriptions of who takes care of you at the cancer center

Learning to navigate your cancer care can be tricky, especially if you don’t have a medical background or prior experiences as a patient. Here’s a look at some of the many aspects of care at the Cancer Center, including some things that happen behind the scenes.whos-on-your-case

Patient Guide Volunteers

Meet with first-time patients to help with wayfinding, completing forms, emotional support, and telling you about resources

Clerks

Check you and in and out of appointments, schedule appointments, provide insurance coverage tips and much more. If you’re unsure, ask a clerk! Continue reading