I have waited four weeks for a surgery to fix a hernia it took 7 months of me going from physician to physician to finally be diagnosed. Last Monday, I had my three-month CT scan after having half of my lung removed October 2018 for lung cancer. Low and behold, I have a new, large lung growth. My surgery is scheduled for 11:00 a.m. this Thursday to fix my hernia. My surgeon will not perform the surgery until my oncologist reads a PET scan and releases me for surgery. This is the background for the clusterfuck that follows.
This is the background of my journey in the last week. The PET scan was ordered on 5/7/19. By Thursday, no one had called to schedule the scan, which is unusual. I called the PET scheduler who stated the doctor’s office had not gotten approval from my insurance company for the scan to be scheduled. I called my insurance company, (for which I worked as an RN, CCM prior to retirement), and they informed me the scan did not require approval.
Now keep in mind I know I must have this scan, see the oncologist, and she must release me for surgery by 5/14/19 or the surgery would be canceled to fix this fucking hernia. The insurance company’s representative calls the only number we have to talk with someone and state my scan does not require approval. This information is lost in translation. I finally find out it is the doctor’s office that is the problem, so I call there. The receptionist attempts twice to contact the nurse who insists I need a precertification for the scan and is holding up the scheduling of the PET scan. She tells the receptionist I do require a precertification for the scan. Although the receptionist has asked this nurse to call me so I can give her the telephone number to verify I do not require approval from the insurance company to have this scan. She will not call me.
By now I am in tears. The PET scan scheduler tells me the first available opening they have for the PET scan is the day I am supposed to have surgery.
Finally, the PET scan scheduler calls. They can do the scan the day I am supposed to see the oncologist who must release me to have surgery after she reads the PET scan that I cannot have until the day of my appointment with her.
So, I call the oncologist’s office and speak with her nurse who could care less about my dilemma. She informs me the oncologist does not work the day after my PET scan so she cannot see me then. This would be 5/14/19, two days before my scheduled surgery that she must approve before I can have the surgery. If the nurse for the oncologist can move some people, she can get me in the day before my surgery. I explain the surgeon’s nurse has told me if the oncologist will not release me to have surgery by the end of the day on 5/14/19, the surgery will have to be canceled. She begrudgingly agrees to contact the surgeon’s office to see if the surgeon can wait until 5/15/19-the day before the scheduled surgery-to find out if the oncologist will release me to have surgery. My appointment with the oncologist is set for 11:15 a.m.
The surgeon agrees to not cancel the surgery and will wait to hear from my oncologist at 11:15 a.m. on 5/15/19. The nurse of the oncologist moves people around so I can be seen at 11:15 a.m. on 5/15/19. She has an attitude about the entire set of conversations as if I have inconvenienced her and she lets me know this. God forbid I cause her any stress.
Keep in mind I have a recurrence of lung cancer, which I was told this surgery would most likely cure, six months after the surgery in which I lost half a lung. A CT scan three months ago showed nothing. Now I have a “nodule”-which means a tumor-the size of the original tumor the surgeon removed. It appears none of this should be upsetting or inconvenience anyone when I am attempting just to get this huge hernia fixed before I must start treatment for this recurrent cancer that should not have returned-or, if it did, not this quickly. This is almost unheard of.
Today I get a call after 5 p.m. from another person at the oncologist’s office. They are moving my appointment tomorrow to 1:15 p.m. I try to explain my surgeon is waiting for my release for surgery. The person at the end of the other line is clueless. Evidently there are no notes about anything I discussed with the office personnel before. I try to explain, but she is really just not that interested. She asks if I have already had the PET scan and I tell her I have.
So, I will not know until tomorrow afternoon whether or not I can have my surgery at 11:00 a.m. the next day. I have no idea yet how extensive my cancer is at this time. I have no idea what my treatment plan will be. So far, in dealing with the office of this oncologist, no one seems to care about the patient. It seems they are so caught up in the scheduling, they have lost all compassion. Their patients are secondary and, unless the patient is invisible, just a pain in their asses.
I am attempting to get through this episode, hopefully have my surgery, and seek care elsewhere after this. I question a botched surgery for many reasons: Severe post-operative infection, huge spigelian hernia no one would diagnose, and now a large recurrence of cancer six months after a surgery that is supposed to be 90% curative. I think after dealing with this office of oncologists it is time to cut my loses and run as soon as possible. For a cancer patient to go through this type of stress is just ridiculous.
I am guzzling Xanax like Tic Tacks to keep from tearing someone’s head off. Has anyone out there been through anything like this with their oncologist? Please tell me I am not the only one.