Survivor Stories

Ron Johns, Stage III

Diagnosed  3/4/2009

Ron was diagnosed with stage 3C melanoma, after finding a swollen lymph node. His primary care doctor immediately referred him to UCSF melanoma clinic. We are grateful for his guidance and the wonderful care we received from the specialists there.
His primary was in his lower back, a lump that had been diagnosed about 10 years prior (by needle biopsy) as a lipoma. After a whirlwind of bone scans, CAT scans, X-rays, and I don’t even remember what all other, we were scheduled to have surgery to remove the tumor and all left inguinal nodes. Surgery went very well, as did recovery. A large portion of tissue was removed from his back as the tumor was deep. Left inguinal and iliac lymph nodes were removed as well. The inguinal nodes were matted. We drove 2 1/2 hrs home 2 days after surgery with drains in his back and thigh. He had 2 bouts of infection. A second surgery was required, as the borders were not large enough.

Radiation was discussed, but the doctors felt it could create greater issues, and we went with their suggestion of Interferon treatment. I will not pretend it was easy, or even that it got better after the first month, but we (all his family) supported him in every way we were able. He is extremely disciplined and strong, and the doctors have all said his spirit, and, we believe, God’s grace and healing, were extremely important in the outcome. Ron was determined to work through this time, and walked one mile several days per week. This took every ounce of energy; at times he’d lie down on the floor as he had no strength to get to bed. Even talking and lifting his head from the pillow became difficult, but he continued to push himself on.
He continued interferon for 11 months. It became impossible to do, so he stopped one month short of what was to be a yearlong treatment. The first month was daily, through IV, the rest we injected 3 times per week. We weren’t given as much information as I wanted at the time, but looking back, I’m very grateful for the wisdom of the doctors to continually direct us toward healing rather than address percentages and prognosis, all of which, we found out later, were quite bleak. Yet, here we are, 8 yrs later, considered in remission. At one point, our best hope was NED.
He has pain and lymphedema discomfort, more than we expected, but, considering the expectancy was recurrence within the first year, and considering the depth of his tumor, we are thankful. Both his oncologist and surgeon stressed the value of faith, outlook, and his ability to keep going as part of his outcome.
At present, we are seeing the oncologist and the melanoma dermatologist once a year, and not doing scans. The fact that he has survived without recurrence this long with the extremity of the circumstances has made all feel he has dodged this bullet.
I suppose any words of wisdom* I could offer is that statistics are just statistics. You are not a number or percentage. If we were, Ron had a small chance of reaching 5 yr survival. Along with that, if there is only 25% chance of survival (or whatever the number) who is to say you aren’t one of that 25%? Also, great strides have been made in treatment and research, and statistics include those that haven’t had the opportunity to benefit from that.
*Alas, not original with me!