Over the years, I have seen many doctors. Some were fabulous but not all. I cannot stress enough, the importance of checking the info your doctor provides to you and getting a second opinion for the major stuff.
When I was diagnosed with MGUS (Monoclonal Gammopathy of Undetermined Significance) I was referred to a hematologist/oncologist in Etobicoke. (Because my GP is in the GTA.) When Dr. C determined that I had progressed from MGUS to Myeloma and needed to begin treatment, we decided that I needed to be referred to an oncologist in the Niagara area. It would be unrealistic to have to travel weekly to the Brampton hospital campus for chemo and then it was not certain that Princess Margaret would accept me as a patient for the stem cell transplant (SCT) since I lived outside of their area.
As such, Dr. C told me to take a trip (we did...the Mediterranean) and when I returned 3 weeks later he had obtained 2 other medical opinions for me. One from a radiologist and another from an oncologist. He has also referred my info to Juravinski Cancer Centre in Hamilton. (I did not want to be referred to St. Catharines as I had a low level of confidence in the Niagara health system. :( That is another story...) Not only did he take the stress off of me by doing this for me, he took it upon himself to get second and third opinions for me. He told me if I ever had questions, I could call him, I did not see Dr. C again, however 8 months later, when I was going in for my SCT I had a voice message left on my phone from Dr. C stating that he heard I was going to have my SCT soon and that he wished me well.
Juravinski accepted me as a patient but I had to be referred to St. Catharines for my pre-transplant treatment. Dr. H was the oncologist I was referred to. I found that he did not have a great bed-side manner, but with specialists, this is often the case. He was sometimes cold and abrupt. He was, however, very factual and I did appreciate that approach. As I had done a significant amount of research into my illness, I found that it did not really matter that he would discuss my illness and treatment with me at a higher level. I have continued to see him every 3 months since that first meeting in October 2013.
Once I started to prepare for my SCT I was referred to Dr. K at Juravinski Cancer Centre. He was fantastic. Very patient, knowledgeable and friendly. He was also the head of malignant hematological cancers. I was very pleased with this doctor!! I saw him a few times prior to the SCT and then afterwards. After a year he told me that he no longer needed to see me and that he should be sending my file back to the general oncologist, (Dr. H). I pleaded with him to allow me to continue to see him since I liked having an MM specialist in my corner and that I did not have confidence in my general oncologist. He agreed and I have been seeing him every 3-4 months since.
After my SCT, I found that Dr. H did not always know the answers to my questions about new treatments or about the side-effects I was experiencing. In some cases he made me feel stupid for asking or like a whiner. As an example, when I asked what I could do about the daily, painful diarrhea I was experiencing, he told me that I was obviously not malnourished and that he had patients who were skin and bone that he was trying to help! I was not impressed. When I discovered a medication that could help, and shared the info with him, he poo-pooed it (LOL), and reluctantly gave me a prescription. In contrast, when I told Dr. K about the drug he took the info and said it was similar to a powder he prescribes but a pill form would be so much easier for patients to take.
Dr. H admitted that he was unaware of many of the details about my type of cancer as he had few patients with MM and he had to know a lot about a lot of different cancers. I get it. At least he was honest about it. If I had a question he could not answer, he would check with Juravinski and let me know. Eventually, when I saw Dr. K on a regular basis, I would tell Dr. H that I would get the info myself from Dr. K and then let him know the answer. Not ideal, but it worked.
Sometimes, my visits with Dr. H went very well. He could be very caring and full of new information gleaned from a recent meeting or information session. Most times, however, I felt that he was just putting in the time with me. I also felt he was resentful of my continued relationship with Dr. K. He often says "I don't know why you are still seeing Dr. K", as he is walking out the door. I don't respond.
I have heard negative comments about Dr. H from many people. Other patients and care-givers, nurses, and home-care workers. I was willing to stick it out because I have another opinion to check with. There are two incidents though, that have given me pause and have compelled me to write about it here.
The first was late last year. I was becoming depressed about the quality of my life. I could no longer go for walks, or ride my bike as I never knew when the fatigue switch would flip and I would be unable to continue. I don't mean that I get tired and feel like I want to return home. I mean that I can NOT continue. Sometimes I have to sit down and rest and others I need to lie down and sleep for several hours. If I continue, I stagger like I am drunk and my thinking processes can become impaired. I do not drive if I am that fatigued!! I always make sure that outings I take on my own take place after at least a day of rest, and I have a Plan B in case I can't get home.
Dr. H suggested that I take a medication vacation. He told me to go off the Revlimid for a few months and see how I felt, then we could reintroduce it at a lower dose if I decided to do so. I did not like this idea, as the Rev was keeping me in remission. He advised me that there were new drugs that were approved that I could take if I relapsed right away. I told him I wanted to discuss it with Dr. K first. Thankfully I did.
The Rev costs me $11,000 a month. (I take it every day, no breaks.) When I began my protocol, I had to be approved for the use since it was for maintenance...and not for treatment. The drug company did approve me and the insurance plan agreed to cover the 80% and the drug company picked up the other 20%. Dr. K told me that sometimes when a patient goes off the drug and says that they are not tolerating it well, the drug company may decide not to continue to provide it to that patient. In addition, my insurance company may decide to drop my coverage if they feel it is not being tolerated and may cause other issues. The last concern was that since I had been taking it for 2 years at that point, if I came off of it, it may not work for me when I went back on.
So...if I had not kept my Dr. K as a second opinion, and I had gone on Dr. H's advice only, I could have been royally screwed. Yes, there were other options on the back burner, but I have no idea if they will work for me.
The second event happened recently. I had pneumonia and Al had to work in Ottawa so my parents came down to baby-sit me. :) I had an appointment with Dr. H and I decided to keep it as I was on the mend anyway. Dr. H refused to listen to my chest to see how I was doing with the pneumonia. He told me that it was my GP's job to check on me. He also told me that my pneumonia must not have been very bad if they needed to find it through an MRI and not on an x-ray. When I told him I was also seeing a cardiologist because of an arrhythmia was found when I was in the ER, he told me that it was of no interest to him since it was not related to my MM. Wow! The icing on the cake was when he proceeded to tell my parents that I was technically no longer in remission, but my disease was not progressing. I was livid. First, he had not told ME that I was not in remission, and how dare he tell my parents!! Thankfully they are hard of hearing and did not really understand what he was saying, so I let it go and will address it with him next visit.
When I saw Dr. K this past week, I asked him if I was still in remission. I related the conversation with Dr. H. He looked surprised and quoted my numbers and said that I was definitely still in remission and he could not understand why Dr. H would say that. He wondered if he had looked at old numbers perhaps.
I think Dr. H just did not think before he spoke. I think he is angry that I am seeing Dr. K. I think that he was in a pissy mood and took it out on me and my parents. This is the Dr. H that is the legendary asshole I have been hearing about. I will let him know how I feel next time I see him. Depending on how that goes, I may have to change oncologists. His arrogance caused me almost 2 months of anxiety and could have caused my parents much angst as well.
This long diatribe is meant to highlight the importance of getting second opinions; of doing your homework; of not blindly following your doctor's orders; and understanding that not all doctors are alike. Some are assholes and some are simply fabulous!! You need to find someone you trust and that you connect with and then hold on to them!!
