Always Waiting

Sorry you are going through this … talk to your brother about following-up, or see of he would be comfortable with you calling on his behalf. There have been critical times I needed the extra "push" from my husband to check-in with doctors and hospitals… and that push always paid off.

In the worse case scenario, for some reason the info from the oncs office may not have made it to the surgeon/scheduler (in which case there would never be a call).   Good luck!

Metastatic disease.  Deep breath in.  Slow breath out.  My experience has been that when the diagnosis comes down the doctors move very quickly.  I had my first scan indicating metastatic disease at the local ER on a Monday night.  Tuesday morning I had an appointment with the oncologist.  Tuesday afternoon I had my biopsy.  Thursday I had a stroke and got my biospy results.  I spent 5 days in the hospital due to the stroke.  The following Tuesday I started treatments at Dana Farber.  When the brain tumor showed up in March (it was a Wednesday) the surgeon wanted to book the surgery for Friday of that week.  I have two kids.  I needed some time to set up childcare so we scheduled it for the following Friday.  When the 10 day post op MRI showed the tumor regrowing they started radiation mapping that day and I was put on the schedule for the following week.  I was also restarted on nivo treatment that week.  There seems to be only one speed at Dana Farber – fast.  Sometimes it feels too fast.  Not sure what other's experiences have been with timing and the surgeon just may be very booked up.  The good ones generally are.  It certainly can't hurt to follow up with the doctors and see if you can get them to schedule things a bit sooner.  Your brother may need some time to digest all of this news.  It took me a long time to deal with diagnosis mentally.  I was always catching up not really believing what had happened.  I'm still catching up.  I just hitting the one year since diagnosis mark and I finally am at a point where I can say yes I have cancer.  Yes, I had a brain tumor removed.  I'm still in some denial about the stroke.  That still feels like a dream.  I wish you both well.  

Jennifer

My experience is a little different.  My husband died from metastatic melanoma 2 years ago. We trusted the the doctors and the'health care system'.  His skin biopsy returned as melanoma on March 9th.  He finally got into the cancer clinic for an initial appointment April 6th.  He had multiple swollen lymph nodes and was scheduled a week later for biopsies of those.  CLND to be scheduled ASAP. It was first scheduled May 9th but got cancelled two days prior due to "no OR" time.  Rescheduled to May 28th.  13 positive lymph nodes in his neck at that time ranging from 1-8cm. We again wait for radiation to be started as that was what we were told was the best.  That started July 7th for 30 sessions.  That is 4 months following the initial biopsy.  He did radiation and then waited until Oct for one dose of dacarbazine to be given as they wouldn't start  ipilimumab without the one dose trial.  Then 3 weeks later he started ipilimumab.  He had 2 doses three weeks apart.  Then one sad day in early December he had a hemorrhagic stroke.  We found out he had brain mets.  They tried whole brain radiation for 10 sessions. He died 4 weeks later.  

Initially I was embarrassed that I didn't advocate for him  more.  He was like your brother and was just trusting that the doctors had his best interest.  I would bug him everyday to call and try to get sooner appointments.  Initially he tried and was told there was no way to get in sooner.  Then would say if they felt I needed to be seen sooner they would have called.  He wanted to be a "good patient" and not rock the boat.  I did finally at one point call the hospital and beg them to take him in for an assessment when he lost 30 lbs over 3 months.  

It now makes me angry that I live in a great country with some of the best healthcare in the world and this was the care he got.  I'm confident he would have lived if he had more prompt care.  I watched with delight this morning on CNN about the doctors in Houston that came through for the patient in hospital with melanoma waiting for treatment, wading through flood waters. They are to be commended for their selfless act. 

Moral of my long story-trust your gut and be a squeaky wheel.  You are fighting for a life and there are no do overs.