Glioblastoma Grade 4: How do handle family conversations, sharing?

On June 21 my wife was diagnosed with a brain tumor on her left frontal lobe. Prior to that she had no symptoms before June 16 when she had some strange twitching on the right side of her face. She had surgery to remove the tumor on July 6. Recovery from surgery was remarkable. No pain two weeks later and already walking two miles a day. Last week we got the pathology of glioblastoma grade 4. She is scheduled for radiation to begin July 31 and continue five days per week for six weeks. We meet an oncologist this week to determine if/when chemo will be used. Needless to say this has been a great shock as neither of us had any indication prior. We are both retired and my wife is an active 70 years old. She is in great shape as she walks 5 or 6 miles daily so we are hopeful this will help in her fight with the disease. I am very concerned with radiation side affects to my wife such as vision issues, or loss of mobility. I have also read about personality changes in some who have had brain radiation. Can anyone comment on these situations, or in general to our situation?

Sorry to hear the news and diagnosis. Similar but different situation for me with my situation above. For me, chemo was added for 6 weeks of radiation and I'm going to maintenance plan of 5 days on, 23 days off. I do have slight blurry vision in my right eye, noticed after treatment one and it did get a little worse. Vision is manageable but different. I did not have any mobility issues. I did experience slight fatigue in the later weeks, frustrated easier, some anxiety, brain fog, and sleeping challenges. Most of this persists 3 weeks after radiation ended. I should exercise more so kudos to her!

I understand your concerns exactly as my husband was diagnosed in Nov 2022 with a GBM. He is an active 69 year old. He did 6 weeks of radiation with concurrent chemo, which is the current standard of care for GBM. His vision did deteriorate a little and he had some eye strain during radiation - he just got his glasses prescription changed to compensate. He had some fatigue - a daily nap was good and needed.

Our doctors encouraged some level of exercise to relieve the fatigue. He had no mobility issues. He was able to still do a lot during that period, we just monitored his fatigue level and adjusted as needed. We will be praying for you and your wife - it is a busy period with the daily radiation and timing the meds with chemo. Take care of yourself too.

My very active 71 year old husband was diagnosed with an inoperable glioblastoma (left frontal, also described as insular) on April 19. He finished 42 days of radiation (chemotherapy was stopped after six days due to platelets dropping). He had no vision changes. The only side effects from radiation he experienced were fatigue, loss of normal taste (and he lost weight because of it), and hair loss mostly on the side of the tumor. Throughout radiation we continued our regular (3-4 times a week) walks (of four to five miles) and he continued to go to Planet Fitness a couple of times a week.

Radiation was at 1:00 pm and we usually got home around 2:30 or 3:00 (30 minute drive to Cancer Center.) After a short rest he was ready to meet our friends for our 4:30 walk. With the increased heat we now walk in the morning. Two weeks post radiation his taste is slowly returning to normal and he is enjoying food again.

All the best to you and your wife. I can tell you that our radiation oncologist and neuro oncologist both have said that regular exercise is one of the best things to help with side effects and prognosis for glioblastoma.

Thank you for the reply. My wife is blind in one eye but has functioned with this situation since early childhood without limitations. Reading is one of her past times so any deficit to existing vision will be emotionally devastating to her. We understand that there are no guarantees with the treatment outcome and that all may react differently. Seems to be an on going situation of weighing the odds at each stage. Prayers for you and all who are in this fight.

A primary tumor affecting an adult son with a family and business became a family challenge last October. Having previously been the caregiver to a beloved spouse with multiple sclerosis, I understood the basics of support and responding to family and friends. While we are not out of the woods, recurrence after surgery, radiation, and chemotherapy has not recurred. Keeping things as normal as possible within his family and business has been our primary goal. We have always been close, so conversation and disclosure has simply been augmented. He has tremendous discipline and has maintained his business and physical fitness. I realize, this is not always possible, but I would urge normalcy as a primary goal. It is not easy, particularly with a child of any age. My best regards to you and your challenges.

@skywarrior, you're right, normalcy may not always be possible or in some cases even desirable. It sure seems like that was a well chosen goal for you and your family, especially since you were already close and open communication was the norm before your son's diagnosis. He and his family must've been appreciative of your well practiced caregiving skills. For some families, a health crisis like this can break them apart and for others it can be the catalyst that begins new pathways of communication.

Did you find that the journey deepened your relationships? How is your son doing today? Was he able to return to working or did changes have to happen within the business?

Thank you for your kind words, Coleen. I have to give both my son and daughter-in-law credit for making normalcy happen. They are both rational and organized, which helped tremendously in parenting their two teenage daughters during this crisis, and now, the continuing recovery stage.

I learned long ago as a former Navy pilot, you have to keep flying the plane regardless of what's going on around you. The primary task is maintaining control while you work to solve the problem.

In response to your question, both family constellations are closer. While anxiety persists, we are all in our regular routines. He is running his business and living his life. I am thankful that we are doing well.