This is only one experience of the many people with cancer have.
The diagnosis of “most likely” cancer left me numb and speechless. I had a “mass” in my kidney. The urologist said she could not do a “biopsy” for fear of it spreading if it was cancer. The only way to tell was to have the kidney removed to see if it was cancer. She said she was going on vacation & we would discuss this when she came back. This was in November, 2016.
Meantime, I had unexpected emergency colon surgery in December, 2016 so I did not have the kidney removed until I was recovered from that surgery. My doctor/surgeon is a specialist in cancer of the kidney and I had the kidney removed May, 2017. I was so relieved to have that over with. The surgery went very well so the recovery did not take as long as anticipated. I went back to my normal life. I was to have a checkup in three months.
Because of scheduling problems with the doctor, the three month checkup turned into five months. During this checkup, the doctor found more cancer. This time in the bladder. The doctor explained I would need more surgery to have the tumors cut and burned out. I had the surgery. I had no bad effects from the surgery and recovered quickly.
There was another three month checkup after that surgery. I never thought for a minute there would be more cancer. However, there was. This time there were more tumors, but, “tiny and “less aggressive looking” were the doctor’s words. I made an appointment for the surgery the following month.
Checking in to verify the appointment for the next checkup, I found out the doctor had made me an appointment for six weeks before the scheduled checkup. I had no knowledge of this appointment being made and wondered what that appointment was for. I called and talked with the nurse. She told me the doctor had made the appointment for chemo treatments. I was shocked and cancelled the appointment. I told her the doctor had not discussed this with me and, I wanted him to call me about that. When the doctor called, I asked about the chemo treatments. He said it would be three times a week for six weeks! When I asked the “effects” of this treatment, he casually said “Oh, you may just feel like you have the flu for 2 or 3 days.” As if it was no big deal!
When I asked what the percentage of the cancer returning was if I had the chemo treatments. His answer was 50/50. I then asked what the percentage of the cancer returning if I just had the three month checkup and surgery if needed. Again, his reply was 50/50. I said since the percentages are the same, I do not want the chemo treatments. His voice became very “authoritative” and he told me if I don’t have the chemo treatments, the cancer would definitely return and it would be much worse. When I reminded him of what he said about the percentages, he changed that to 80% the cancer would return without the chemo treatments and, again said it would be much worse. Even though he had already said the tumors were “tiny & less aggressive looking” than before. He then said he would do one chemo treatment while I was under anesthetic in the next surgery for removal of the tumors. I agreed to that since I was going to be recovering from the surgery anyhow.
The night before the next surgery, my doctor called me and said he had a “scheduling problem” and my choice was either cancel tomorrow’s appointment and make another appointment when he could do the surgery or, he knew someone who could do the surgery. Someone, who he said he would trust his own family with. Since I was ready for the surgery the next day, I really didn’t want to cancel it and since he recommended the doctor, I said I would have the surgery done by this doctor. He also said he decided against the chemo treatment then because he didn’t want to “irritate my bladder any further”. I didn’t understand why he changed his mind. Now, I am thinking it was because he knew this was a “fellow” doing the surgery.
Recovering from that surgery took up to six weeks and I still wasn’t 100% back to normal. There was constant pain in most every part of my body. I felt like I had been “stomped on”. There was also much more bleeding that lasted longer. The catheter tubing was way too long. I could feel it constantly. It was hard to sit down. I never had problems with the catheter last time and never had problem with my hips until now. I later found out the Dr. who did this surgery was a “fellow”. In other words he was a certified urologist but was spending a year at this hospital learning about cancer. He was “learning” how to do this type of surgery. In effect, I was his “test” patient.
The Dr. had not told me this! At my next three month checkup, I asked the nurse if that Dr. had done this type of surgery before. That is when she told me he was a “fellow and “learning about cancer”. I told my Dr. about the results and, he just said “I’m sorry”. The test showed more cancer again. The Dr. said they were small.
This time I had to use the catheter for several more days than before. I called the nurse & asked why. The Dr. told her the reason was he had to “go deeper” this time. This leads me to believe the “fellow” Dr. did not get all the cancer last time and so the cancer had four more months to grow and they were now in the lining of my bladder. Of course, I don’t expect my Dr. to agree with that because he would not admit it if it is true.
This time, my regular doctor did the surgery. I didn’t have that much pain for the first couple days. Then it hit me hard and two weeks later I am still dealing with the pain. The pain meds don’t seem to be working. I am waiting for the Dr. to call with the pathology report on this surgery. He pushed chemo treatments again and said these were “standard procedure”. I said I would think about it and let him know when he called me with the pathology report on this last surgery. I do expect the Dr. to tell me the cancer is now in the lining of the bladder so it is worse than before. I will spend the rest of my life with cystoscopys every 3 months to show more cancer and a month later for the surgery to take the tumors out until that isn’t enough anymore.
I have had over four months to think about all of this since the “botched” surgery and decided I would not have the chemo treatments. I don’t want to spend even another day feeling ill once I recover fully from this last surgery. I have also decided to stop all forms of treatment for the cancer. This is not living. This is “existing”. I will be telling my Dr. my decision when he calls with the pathology report. It has been a month and I still haven’t heard from him.
After I notify the doctor, I will be telling my children my decision so they have time to accept the fact I will die from this cancer. They are such a blessing with their love, caring help and support. I could not have survived these past couple years without them.
I don’t know how much time I have left. Doctors can only guess at that. Now that I have made my decision, I feel “free”. No more Doctors, hospitals or surgery every three months. No more four or more weeks of recovery from that surgery. I will try to live a normal life as best I can and, enjoy the time I have with my family. I also feel free from thinking about what lies ahead. God is in charge of that.