Since I have stopped my chemotherapy treatment, I have been looking into other options. It's interesting . I did not know this until I did some research recently but in the us, oncologists are the only group of doctors out of the medical practice that are allowed to make a profit from writing prescriptions for chemotherapy. While other doctors May simply write prescriptions, and there may be some minor compensations for being the doctor that prescribes the most XYZ prescription and get a free dinner at a convention for doing so etc. Oncologists actually purchase the chemotherapy drugs wholesale then Mark up the prices and whatever the insurance company will pay outside of the wholesale cost, that money goes into the doctor's pocket.
It's not to say that I do not trust my particular oncologist. I actually do. He's a very trustworthy doctor and he was very careful to offer me options that he believed were scientifically backed up by the lab results from the genetic testing and so on.
But following my decision to stop the chemotherapy drug I was on, I looked for a second and third opinion in a few other medical communities.
I had my first questionable encounter with an oncology doctor. I will not share details about where I went but when I went in to see this oncologist, initially, he took a nice amount of time to chat with me and ask about my experience was with my prior medications and why my decision to stop the drug I was on. We talked at length and I have many very valid reasons for why I needed to stop that drug.
After listening to me, he big fat spent a tiny bit of time looking over my history. I'm not delusional, I understand that doctors are very busy people and I did not expect him to do a lot of research prior to meeting me but it felt like he had not done anything other than have a preconceived notion of what he was going to suggest to me. I was very irritated. I felt like this was a waste of my time. Because after briefly reading through my case, he pulled out a piece of paper that was clearly already pre-printed and big fat suggested I go right back on the drug that I had just stopped and add another nasty drug right on top of it. It was very frustrating. It is a huge, HUGE effort nowadays for me to get up, get dressed and showered, get in the car, drive an hour and a half to this medical facility, park, navigate through a huge campus, wait in a waiting room for an indefinite period of time until I am called out for the appointment. Nevertheless, I made the effort because I wanted to do my due diligence. And after all of that, after taking great pains prior to setting this appointment, explaining what was going on and why I wanted to see him, he has nothing new to offer me.
I have never been so angry in my life.if he was just going to offer me the exact same drug that my current oncologist was offering, why did he encourage me to go through the efforts to to see him? He had nothing new to offer. He did have an extremely expensive suit. that suit could not have cost him under six grand. I used to work in the men's department of clothing store for one brief moment of my life and I know what good men's suits cost. So when I went back home I did some research and this is what I had found.
Someone called just can make as much as $3,000 off of one cycle of chemotherapy. I don't know how much my particular chemotherapy would have generated him but I don't trust for one minute that he wasn't seeking to make a buck off my misery. So I'm pretty mad about that period but I'm going to let it go.
The second thing I'm kind of frustrated with is that I've been dealing with abdominal swelling and pain and inflammation and bloating for- it feels like at least a year now. Over the next several months since I started feeling this way, I brought up my concerns over it and how miserable I was. I brought it up with my GP and oncologist and an ER doctor, CR doctors actually, and my pulmonologist and my heart doctor and I can't even remember who period I kept bringing it up over and over and stressing him I felt this was a big deal not a little one. I got the, "head tilt, " Oh we're so sorry, it's related to your cancer.", attitude from just about every one of them period including my oncologist whom I generally feel has a very sympathetic and proactive response to my concerns. I thought it might be an ulcer, I was worried that it might be a hiatal hernia, and I kept asking for testing etc. I was kind of blown off. Let's not mince words. I was blown off. And at some point I requested to be referred to a gastroenterologist. But since none of the doctors I spoke with considered it an emergency, they just sent me a referral and since gastroenterologists are in high demand here (given America's love of really bad foods and horrible eating habits), I was placed at the end of the line and the soonest available appointment was many many months out period in fact I think March 27th was the first available appointment with the only available gastroenterologist that was taking patients at the time! so of course I was on hold waiting for this appointment to get any attention whatsoever to deal with this horrible debilitating condition I was dealing with for over a year! A YEAR!!!
The abdominal pain, nausea, vomiting, bloating, inflammation, and severe bowel problems continued. Just less than two weeks ago I spoke with my natural path doctor. He is a neurologist by profession and has retired and turned to naturopath / medical.
By this time I was almost completely debilitated. I was throwing everything up almost all of the time . I would wake up throwing up for over 2 hours in the morning even if there was nothing in my stomach to throw up. I went from 127 lb down to 109 in about 4 weeks. I could hardly eat and I could actually hardly breathe. My symptoms were such that after I ate it was like I had to strain for breath. It was a horrible horrible feeling and I was dealing with this for months.
About 20 seconds into listening me talk about this my naturopath doctor asks me to get a lab test for h pylori. turns out I had it. Also turns out that avastin, the drug I was on in my research shows that about 15% of patients end up with gastrointestinal ulcers. Now I have to ask you, if this is true, why didn't my doctors believe me when I reiterated that I was on a vastin and then I felt it was the source of my problem and that I felt like I had an ulcer period and every single one of my symptoms that I was complaining about all together in one big lump every time I talked to a doctor our verbatim what an ulcer symptom is?!
Anyway, I am thankful that it's been treated. I'm frustrated that I had to deal with this for so long and that I've dropped so much weight. It's hard enough keeping weight on as it is and now at 59 I'm still dealing with 111 lb and having lost way more weight than I should. I will also tell you that it couldn't have come too soon. I was so sick and dropping weight so fast in the last week before I got the medicine that I am certain I would have been dead before I could see my gastroenterologist.
I hope this helps other people. I don't know how it will help but I know that sometimes hearing experiences from others can give you encouragement to follow your own intuition and instincts and push through. I'm very grateful to this doctor.
I'm interested in hearing of other people's experiences and I hope that if any of you are dealing with similar symptoms and have any questions please ask me. I wish you all the best.
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