Mandy, I’m very sorry to read about your recurrence!!! After going thru OC diagnosis 3 consecutive years I understand what you are going thru. It’s very hard to handle being told the cancer has returned.
The surgeons chat right before your surgery telling you there weren’t any options left for you if the cancer returned definitely would be something all of us would have remembered too. However, don’t ever rule out a 2nd or 3rd opinion! Nobody can predict the future, not even the doc who said you had no other options left. What one doc isnt able to do, does not mean another doctor can’t help you either.
Since the immunotherapy drugs have come out after being fast tracked thru the FDA, maybe some other new methods of managing recurrences is out or almoyready to get approved? I’m sorry but I don’t remember when the first immunotherapy drug that worked for some OC patients.
Erbitux, centibumax?, keytruda or one of the other names it goes by has saved a great many patients who may not have had any other options several years ago. It always hurts my heart when patients have no hope left. I always try to see the positive in all situations which some may consider a waste of time or pointless. It sounds like you are already at a CCC. Is it possible to get another opinion at another CCC? There’s help available for free flights and housing if transportation is a problem.
One of the most important things I have learned from being part of OCF actually saved me life. When my third round of OC happened, I was sure there weren’t any options left. I thought long and hard what path would be the best one for my teenaged children after I’m gone. I was convinced I had no chance to survive. Although I didn’t know of a single 3x OC survivor, Brian assured me there are a few 3timers out there. After weeks of weighing options, intense contemplating and coming to my conclusion for the hardest decision I’ve ever had to make, I chose to not seek treatment. This was what I considered to be the easiest for my children. They’d have me with them while I felt strong and healthy to mentally prepare them to live their lives without me. Then I went about making the most of every single day, making positive memories my children would always remember (they still do remember everything from 11 years ago).
My OCF friends refused to hear it! They (especially one person who was especially persistent.... I’ll call her “D”) It took a lot of convincing but it finally sank in. D repeatedly told me I can’t quit before I try to beat it. By giving up and refusing treatment I didn’t actually know if I could survive the 3rd round of OC. Luckily I did get thru it even thought I had a great many complications requiring me to stay in the hospital 2 very long months plus a long hard year of recovery at home. The way everything turned out for me was a big surprise to everyone, especially my doctors. The odds of my survival were less than 20%. who did not expect me to survive such high odds against me.
Of course it’s completely up to you what path you take but please do yourself a favor and at the very least get a second opinion. It can’t hurt to hear what another experienced CCC doc has to say. The comment your doc gave you 5 years ago may not be relevant now. The doc may not remember they even said it unless they marked it on your chart. Hopefully your doc will have some options. I would suggest asking if another opinion is something you should do. That question always brings interesting answers.
Best wishes with your appointment!!!! We’re here to lean on whenever you need to. Sometimes a bunch of strangers who have been thru the same horrific things can offer the best support. Please update us when you can.
