Donna G Posted August 23, 2003 Share Posted August 23, 2003 My husband was diagnosed with SCLC in March 2003 and finished chemo July 18. In mid-April, the oncologist had told Steve after his 2nd round of chemo that he was in partial (75%) remission and after his 4th round, told him he was almost in full remission, and the only thing that kept him from saying 100% remission was one SLIGHTLY enlarged lymph node, but it was only less than 1/8" larger than normal. Steve asked him several times if he could see the Cat Scan film and the onc said that wasn't necessary because the films were clean - no evidence of cancer. We believed him until Steve saw the pulmonologist in May, for his worsening cough. He looked at the Cat Scan films and asked if Steve was undergoing chemo and Steve told him he was and the doctor said that there was still cancer present.. We were shocked... AND, we lost all faith in the oncologist. Also, Steve brought all this to the attention to the oncologist, who admitted that he hadn't even looked at the films!! He did, then, in front of us. The radiologist had even circled the cancer highlights. Steve's recent PET SCAN results confirmed that there is a cancerous small mass still present in the right lung, as well as some lymph nodes. The 3cm mass is what the oncologist was saying is "probably" just dried up blood vessels and dead cancer cells and he was just going to leave it at that assumption. I asked for a PET Scan and the first time he said he didn't think it was necessary, but after insistence, he agreed. Thank goodness because we now know there's still active cancer cells..... BUT there is no mention of restarting chemo. Steve had an appointment Wednesday with his oncologist, after his bloodwork. The purpose of this visit was for the onc to go over the PET SCAN results. We had a copy of the results, but had never been explained what they meant. The oncologist came into the room and began drawing pix, etc. which wasn't really related to Steve. He was stammering and talking in short phrases, sort of like he didn't know what to say and not doing well at ad libbing.... We both asked a few questions and he tried to answer, but wasn't clear. When I asked him more specifics he told us this: HONESTLY, I HAVE TO SAY THAT I DON'T REMEMBER WHAT THE PET SCAN RESULTS WERE AND I'VE SEEN 3 DIFFERENT COPIES OF THE REPORT BUT I DON'T KNOW WHERE ANY OF THEM ARE... I'VE LOST THEM!!!! I don't know why he didn't just pull the report up on the computer and print it... I surely would NOT have come to the consultation without them, when that was the focus of the meeting. Anyway - he told Steve that there was evidently live cancer and he was NOT going to continue chemo until the cancer starts GROWING! Steve's cough is terrible and getting worse all the time. The onc has "suggested" reasons for the cough - from asthma to post nasal drip...... When I asked again about the cough, he said, very nonchalantly, "well, there could be cancer in the air sacs" and went on to something else..... I asked if there was a way of knowing and he said NO. I asked if there could be another bronchoscopy procedure and he said NO and I asked why not and he said "Only if there's massive bleeding involved." I knew better, or at least thought differently. SO, we left there with no answers and in total frustration.... The pulmonologist (that did the bronchoscopy and biopsy in March) has an office on the next block. I pulled in there, asked Steve to get an appointment. He got the appointment for the next morning (yesterday.) The pulmonologist IS doing another bronchoscopy and a new biopsy THIS Tuesday!! He showed us the PET SCAN films (I had gotten the films and took them with us, so there would be no chance of them being LOST.) He thought Steve should have continued on chemo since there was live cancer. From all I've read, an X-Ray is the LEAST effective way to detecting lung cancer. Even when Steve was first diagnosed, he was thought to have pneumonia.. the cancer didn't show up on the X-ray. NOW, the oncologist said he would follow up with Steve monthly - and I asked if he would be having a CAT SCAN monthly and he said, "NO, JUST AN X-RAY!!" No way are we just settling for an X-Ray! When we saw the oncologist Wednesday, I asked about a tumor marker included in the bloodwork. He had a Tumor Marker (CEA) in March and again in May, but not since. He looked through his folder Wednesday and said he ordered one for that day. I asked if the results would be in with the CBC that day and he said NO - in a day or 2. This afternoon I called the Cancer Center and there WAS NO CEA ORDERED! His nurse looked at Steve's chart and the order is down for NEXT week!!! I can't believe the uncaring and incompetence when people's lives are at stake......... Quote Link to comment Share on other sites More sharing options...
Gina D. Posted August 23, 2003 Share Posted August 23, 2003 I think maybe it's time for a new onc. My GP was just about as incompetant as what your onc. sounds like. I am glad he had little involvement in my active treatment. I switched to a new and caring wonderful GP as soon as I was over the hump of surgery. Your onc is your backbone, and if it starts bending, get it fixed. Is it too late or difficult to change? Quote Link to comment Share on other sites More sharing options...
Guest Posted August 23, 2003 Share Posted August 23, 2003 I sure don't know where you live but if there is more than one onc i would sure change real fast. I think your onc is still in some training unit. He is not very trust worthy...life is to precious to have some nut....and there are some in the profession....one wonders how they passed the the examines....maybe he has been taking one to many pills.... Quote Link to comment Share on other sites More sharing options...
Guest Posted August 23, 2003 Share Posted August 23, 2003 iTS ME AGAIN, FOR SOME REASON I CAN'T GET LOGGED IN, THE ABOVE POST IS FROM NORME. HAVE TO WORK ON THIS WHEN I GET BACK.... Quote Link to comment Share on other sites More sharing options...
Fay A. Posted August 23, 2003 Share Posted August 23, 2003 Please fire this Oncologist, and hire someone else. Fay A. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted August 23, 2003 Share Posted August 23, 2003 The onc has lost your trust. He should now lose your business. Ask the pulmonologist to recommend someone. Don Quote Link to comment Share on other sites More sharing options...
Rick Posted August 23, 2003 Share Posted August 23, 2003 It is definitely time for a new ONC, he works for you and the service he provides is not a favor but a paid service. Get rid of him. Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted August 26, 2003 Share Posted August 26, 2003 Donna, I have had many of the same problems with the oncologist and the overall care that comes with LC. I find the tacticts that some of these professionals use to be appauling and insulting. I must look like a stupid idiot by listening to some of the excuses and explanations my onc has given me. Yes, I am sure there are some great,caring physicians out there (Sam for one), but as a whole, there is little to be desired. I am not unlike Mainecoon, I think they are simply mechanics in white coats. Only difference is, the auto mechanic has to make good on his work before he gets paid...the doc gets paid either way. My wife is receiving treatment at Baylor Medical Center in Dallas. From the Receptionist desk all the way up to the Doctors office, it is complete turmoil... the right hand doesn't know what the left is doing. They make you feel like you have just walked into the Dept. of Motor Vehicles. Granted, once you finally receive treatment (chemo and radiation) and you are away from the front desk and docs office, it's all good. The nurses and the radiology techs are very efficient at what they do, and it's probably like that in most cases everywhere I'll tell you right now, I don't recommend one to go to Baylor, especially if you are older. They could care less if you find where you need to go or not...We are younger, and though we could physically get aroud the complex and find our way, the older ones were left out to dry. I spent half of my time there helping the elderly patients find there way around. It's sad to watch them walk aimlessly around the halls. No help from Baylor though... as I said, they could care less. Doctors put their pants on just like the rest of us... one leg at a time. I think after I had a meeting w/ my oncologist, he got the idea that if he told me one thing and did another, I would flatten his nose... guess what? He is right. Call me any name in the book you want (redneck doesn't bother me). He has not been true to his word on many occassions and I told him that I would not listen to another lie. When you don't tell the truth, it's called a lie, even if you are a doctor. Drs. have to answer to nobody and I think there should be a forum for people on this website to state names and locations of Dr.s that they are dissatisfied with. How else is one to know without finding out the hard way. NOT IMPRESSED WITH THE MEDICAL FIELD! -Jack- Quote Link to comment Share on other sites More sharing options...
chloesmom Posted August 26, 2003 Share Posted August 26, 2003 Donna, I feel bad for you and the other folks who have received less than good treatment. It's bad enough to be sick, but to be lied to and treated by uncaring, disorganzied so-called professionals is uncalled for. I went to the University of Chicago for my surgery and consulted with the oncology department there. My surgeon is not the friendliest person I have ever met--I feel that he just totally lacks people skills, but that is not important to me if he fixed me. I do have to say though, that the rest of the people I had contact with at U of C for clinic visits, surgery and aftercare, and the consultation with the oncology were helpful, kind, and extremely efficient in managing our time. All appointments were, within reason, kept on time. They tell you to plan to be there for such and such amount of time for your visits. I think the place is great and would highly recommend it to anyone. The only reason I am not taking chemo there is that a local oncology practice with a good reputation is within walking distance of my home, and I don't care to drive to Chicago 3 weeks out of 4 for the next 3-4 months. Please try to find new doctors--it's bad enough being sick, you don't have to be treated badly too. Quote Link to comment Share on other sites More sharing options...
Guest helene Posted August 27, 2003 Share Posted August 27, 2003 Donna G. I really think you need to find another onocologist as quickly as possible. This one doesn't seem to have his act together. My prayers are with you and of course, you'll keep fighting. helene Quote Link to comment Share on other sites More sharing options...
Donna G Posted August 28, 2003 Author Share Posted August 28, 2003 I agree that the current onc seems very incompetent and "not wioth the program." In the beginning, he wasn't like that. He was very professional and seemed to have everything "on the ball" - but when you have just found out you have LC - you're receptive to ANY type of hope of treatment. He did get Steve in a clinical trial, for which we are grateful. Today, I will get the biopsy report.... Then, I will call Sloan-Kettering and see if I can get Steve seen earlier than mid-September. If not, we will try to see another onc in the meantime. A friend said to me today that if Dr. C came into the examination room, reading the report that he said he didn't even have, then he didn't have time to absorb the contents or form a plan of action. I agree. Steve's last chemo treatment was July 18 and he hadn't even had a port flush.. They forgot to schedule it and he has his first one tomorrow - 6 weeks after his last chemo! Dr. C's office just now called.... The appointment with the radiologist is September 11. As the rest of you are doing - ALWAYS PRAYING FOR A MIRACLE!!! Quote Link to comment Share on other sites More sharing options...
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