Hope for others and a survey on oncologists

mknevill

First of all, I have been a medical transcriptionist for 40+ years and know a little more than the average person. Which isn't always good, but has kept me from having at least 1 operation before the diagnosis was made that would have screwed me up for the rest of my life in terms of cancer elsewhere. 

I am now 2 1/2 years status post diagnosis of AC stage 3b, with pelvic lymph node mets. I didn't think I would be here now, but I am. So to anybody who has this diagnosis, there IS hope. Had the usual radiation and chemo. Follow up biopsies in November 2014 showed nothing, absolutely nothing to biopsy. Colorectal surgeon was very surprised. So it is possible. 

Now I get wordy, just would like to know other's experiences with oncologists. During this past 15 months, I have had a hip replacement, partial small bowel obstruction from a 5th hernia, caused by the physical therapy for the hip replacement, and a parotid "tumor" that popped on my 2nd PET scan removed that had been there for 29 years, had never bothered me until after the needle biopsy, and had not grown--I don't consider it a primary because it was so low grade they couldn't grade it. However, my oncologists, of course, insist it was another primary. One ENT wanted to take the whole parotid gland; second opinion just wanted the tumor. Went with the 2nd opinion and the area was completely removed. Now I have a permanently numb ear that drives me nuts. I had 3 PET scans that showed something wonky that had nothing to do with the AC, including the parotid thing. The PET Feb 2, 2016, showed "new primary or metastatic disease" in the left lower lung lobe. However, I was just getting over pneumonia from January. My pulmonologist was extremely confident it was cancer. extremely doubted aspiration. My oncologist had wanted me to bypass the pulmonologist and head straight to a thoracic surgeon, but I refused and went to the pulmonologist.  Had lung biopsies (which caused a partially collapsed lung, but fortunately didn't need a chest tube) and on Feb 28, a week after the biopsies, and after waiting for an hour in the waiting room and a half hour in the doc's exam room, pulmo came in and said it was from aspiration from the pneumonia. Which is what I had said. He acted really pissed off that he was wrong. February was an awful month, but ended fine. 

Was supposed to have a repeat CAT scan in June to check on the lung, but again refused, as I knew I was having the PET/CT in August and am trying to limit my radiation. The lung biopsies were negative!!! Changed to an oncologist closer to home, same group, but their radiation area was being revamped when I needed it, so had to go an hour away. Everyone loves this oncologist, I was told. Well, not sure who they were comparing him to--disheveled hair, no smile, fingernails bit to the quick and looked inflamed, didn't wash hands. One of the first things he asked me was where I would want to have my lung lobectomy, should I need one. WTF--the biopsies were negative. Might need it to be "on the safe side." So another month of anxiety waiting for the PET/CT, which I had last Tuesday and at least he got me in Thursday to get the results. I was a nervous wreck thinking there was more to the story than I was being told. Well guess what, the area of concern has grown smaller, the FDG and SUV readings are dramatically lower. Aspiration. And nothing else wonky showed up for a change. "Normal" PET scan. 

I realize oncologists have to give some horrible news to people. However, this was great, fantastic news. I really would have thought he would be glad he was giving good news for a change. A smile, or some encouragement that this was wonderful. Nope. Stone-faced. So I got pissed and told him how upset he had gotten me about asking where I wanted surgery. He just shrugged. 

So the question is: Are all oncologists this dire? Do any of them smile? My radiation oncologist was the most optimistic, positive doc I have ever met. Realize they can't all be like that, and I don't want to change oncologists again. But really would like to be working with someone who can celebrate a little with a good result. 

Sorry for the length. 

 

 

 

mp327

mknevill

Welcome here--sorry to hear of all that you've been through, but happy to know you got good news on the biopsies.  As for stone-faced doctors, I do not care for them either.  While I understand that oncologists, in particular, make a living delivering a lot of dire and bad news to their patients, I am a person who believes that attitude can make a world of difference in how a patient does while in treatment or while they are living the last months of their life.  Kindness, compassion and the occasional smile, even under unfortunate circumstances can go a long way.  I would think that doctors would want their patients to trust them and, frankly, I don't trust people who cannot muster any of those.  I was so very fortunate to have the best, IMO, medical oncologist and radiation oncologist.  Sadly, my medical oncologist dropped dead last December 26th. of a massive heart attack.  He was the best and I wish each and every cancer patient could have a doctor just like him.  

All of that said, I think it is so important for us all to have confidence in and be comfortable with our doctors.  Therefore, if I were you, I would be searching for a different doctor.  That is just my opinion.  I wish you all the best and hope you will know which direction to go in this regard.

Martha

mknevill

mp327 said:

mknevill

Welcome here--sorry to hear of all that you've been through, but happy to know you got good news on the biopsies.  As for stone-faced doctors, I do not care for them either.  While I understand that oncologists, in particular, make a living delivering a lot of dire and bad news to their patients, I am a person who believes that attitude can make a world of difference in how a patient does while in treatment or while they are living the last months of their life.  Kindness, compassion and the occasional smile, even under unfortunate circumstances can go a long way.  I would think that doctors would want their patients to trust them and, frankly, I don't trust people who cannot muster any of those.  I was so very fortunate to have the best, IMO, medical oncologist and radiation oncologist.  Sadly, my medical oncologist dropped dead last December 26th. of a massive heart attack.  He was the best and I wish each and every cancer patient could have a doctor just like him.  

All of that said, I think it is so important for us all to have confidence in and be comfortable with our doctors.  Therefore, if I were you, I would be searching for a different doctor.  That is just my opinion.  I wish you all the best and hope you will know which direction to go in this regard.

Martha

Thank you Martha

I really was beginning to think it was me! I have seen 20 doctors since all this began, including the other issues, and there are about 5 I would go to again. Am SO sorry to hear about your doctor. What luck, to find a fantastic doctor and then lose him. There was an amazing oncologist here that my friend went to, absolutely amazing. The local hospital gave him so much grief about how much time he spent with his patients, he has moved to Hawaii. If I could afford to see him every 3 months, I might go! Just before the emergency hernia surgery, just before going into the operating room, a nitwit PA told said, "I hate to tell you this, but you have uterine cancer. Maybe they can take care of that while you are having the hernia repaired."  What an idiot to think that. I have fibroids. I knew I have fibroids. But in the back of my mind during the hospitalization was this new possibility. Finally an oncologist from my group (who has since retired, dammit) came and saw me and reassured me it was fibroids. During another hospitalization my records said I had ovarian cancer--a typo in the chart. So I'm pretty paranoid of doctors and I may give off that "vibe" when I meet a new one. I will be talking to my colorectal guy, whom I do trust and who does smile, about a different group. Thanks again.

mp327

mknevill

I wish you the best in your search for a different doctor.  I am certain that there are still many good ones out there.  I am currently seeing an osteoporosis specialist who did not impress me at the time of my first visit.  My description of him was "dry as dust."  The guy would not crack a smile, even with my best efforts to just get one out of him!  Luckily, the second visit was better and we got along okay.  I am going to see him again this Wednesday and perhaps he'll even tell me a joke or two.  LOL!  I am not holding my breath!  Take care and keep us posted.

Martha