Kaye
08-22-2004, 11:05 AM
I also read about MDAnderson no longer giving 2nd opinions--a very sad day for those with cancer. My take on it is that the rest of the medical world can't keep up with new treatment protocol used and/or recommended by MD Anderson.
My experience with 2nd opinions is that they are only as good as ones' insurance. I met a gal who was going to get Herceptin for a year through her HMO insurance. She switched to a PPO plan with the same dr. and was told she could have Herceptin for the rest of her life.
I am at extremely high risk for recurrence and am almost certain something is going on. Last May my onc mumbled something about chest wall recurrence. I told my surgeon that I was having swelling in the axillary node area and she mumbled something about not being able to do any more surgery (since I had had radiation) and she said it wouldn't heal.
I have had increasing lymphedema despite ongoing lymphedema treatment--daily exercise, massage, and had to go back to bandaging--still worsening which is suggestive or recurrence.
Then there are the hot spots on my spine and shoulders along with the excruciating daily pain.
Then there is the liver but won't get into that. I forgot to mention the scans--many of them but they are each done on different setting (same machine/same facility) so that valid comparisons are almost impossible. Then there are the areas imaged--never including all the areas in question. Then there are the scan reports--so many typo's that are now just increasing...like wrong dates--2005--on a July 2004 report, then there is the missing date of the procedure. Then there is the interpretation included in the reports. I just had 3 separate MRI's of the spine done--they wanted them separately even though they had been combined before. This way they could be interpreted by different radiologist and compared with different scans.
The CT scan showed many changes--extensive degenerative disease -- not likely associated with b.c. according to the report (Yeah-right. I was only dx'd with 3 types of very aggressive b.c. with 9 of 12 positive nodes, extensive lymphovascular invasion, and was Her2+ but these changes are not likely associated with b.c.--even though I have good range of motion--yeah right. Oh and the shoulder pain--in agony for over a year now. The x-ray was first reported to be normal. There was a spur there but it was "degenerative change" Yeah right--especially since bone mets of main type I have are just as likely to show up as spurs. I was bounced around like a ping-pong ball on that one--from one wrong specialist to another. Finally, I found one dr. who was just as dumb-founded as me and agreed that the most important thing to rule out was recurrence. She tried to order better and more inclusive tests but got her hand slapped -- figuratively. She then changed her tone and told me she was going to have to go along with the oncologist. She was not going to order any more tests because she "didn't know how to interpret them."
I had thought I had found a dr. who would help--even though I should never have seen her (rheumatologist). I was sent to her by the regular dr. I finally got regular dr. to send me to an orthopedis who ordered shoulder MRI. Now MRI was of shoulder only even though upper arm ached because regular dr. only sent me to him for my shoulder. Report of MRI stated that what was going on could be compatible with rheumatoid arthritis. Now it hurt mainly at night and I had absolutely no other signs of rheumatoid arthritis. The orthopedist told me he thought problem was in my neck. I asked if he were going to discuss that with my regular dr. He said "no" because regular dr. only referred me to him for my shoulder. I then told regular dr. what he said. So, regular dr. referred me to rheumatologist--even though orthpedist thought problem was in my shoulder and rheumatologist wanted to rule out anything cancer related--but nothing has been done.
Oh and I forgot about other spine scans. There were 17 films of thoracic spine. Report did not compare it to any others.
Then there is the lumbar spine. That was initially done after sudden onset of sciatic pain one night. It showed cyst or mass. I won't go into run around I got getting test--but it was bad, if not worse than the above. My onc. told me to ask a neurologist for a referral to a neurosurgeon. That was also a run around. I eventually saw neurosurgeon who referred me to spine dr. and spine dr. was 100% sure I had cyst. I had repeat MRI that was stable 3 mos. later. I then started a statin drug and doubled the celebrex to maximum anti-tumor dosage. I had repeat MRI 5 mos. later--now for first time cyst or mass was smaller but no longer had regular borders. Spine dr. was less sure that it was cyst--decided to watch. In the interim it showed up as a hot spot on a bone scan. Now I decided to check it again--5 mos. later. This time radiologist who read it didn't compare it to most recent earlier report but did it to films of 1 year earlier and said it was stable. I asked spine dr. --did it get smaller and bigger again? He told me radiologist don't have to compare all scan reports. I then politely said--but last report and also he had said it was smaller--he then accused me of not trusting him and that I needed to see someone else. He then told me I shouldn't concentrate on this and said I might miss something else. ??? "I" might miss something????
I am sure he was referring to cervical spine. Something weird is going on. I am also concerned about the brain--but that's another story.Now--I did see someone privately who looked at some of the films and said most recent one did not show that it was stable with one a year ago.
My experience with 2nd opinions is that they are only as good as ones' insurance. I met a gal who was going to get Herceptin for a year through her HMO insurance. She switched to a PPO plan with the same dr. and was told she could have Herceptin for the rest of her life.
I am at extremely high risk for recurrence and am almost certain something is going on. Last May my onc mumbled something about chest wall recurrence. I told my surgeon that I was having swelling in the axillary node area and she mumbled something about not being able to do any more surgery (since I had had radiation) and she said it wouldn't heal.
I have had increasing lymphedema despite ongoing lymphedema treatment--daily exercise, massage, and had to go back to bandaging--still worsening which is suggestive or recurrence.
Then there are the hot spots on my spine and shoulders along with the excruciating daily pain.
Then there is the liver but won't get into that. I forgot to mention the scans--many of them but they are each done on different setting (same machine/same facility) so that valid comparisons are almost impossible. Then there are the areas imaged--never including all the areas in question. Then there are the scan reports--so many typo's that are now just increasing...like wrong dates--2005--on a July 2004 report, then there is the missing date of the procedure. Then there is the interpretation included in the reports. I just had 3 separate MRI's of the spine done--they wanted them separately even though they had been combined before. This way they could be interpreted by different radiologist and compared with different scans.
The CT scan showed many changes--extensive degenerative disease -- not likely associated with b.c. according to the report (Yeah-right. I was only dx'd with 3 types of very aggressive b.c. with 9 of 12 positive nodes, extensive lymphovascular invasion, and was Her2+ but these changes are not likely associated with b.c.--even though I have good range of motion--yeah right. Oh and the shoulder pain--in agony for over a year now. The x-ray was first reported to be normal. There was a spur there but it was "degenerative change" Yeah right--especially since bone mets of main type I have are just as likely to show up as spurs. I was bounced around like a ping-pong ball on that one--from one wrong specialist to another. Finally, I found one dr. who was just as dumb-founded as me and agreed that the most important thing to rule out was recurrence. She tried to order better and more inclusive tests but got her hand slapped -- figuratively. She then changed her tone and told me she was going to have to go along with the oncologist. She was not going to order any more tests because she "didn't know how to interpret them."
I had thought I had found a dr. who would help--even though I should never have seen her (rheumatologist). I was sent to her by the regular dr. I finally got regular dr. to send me to an orthopedis who ordered shoulder MRI. Now MRI was of shoulder only even though upper arm ached because regular dr. only sent me to him for my shoulder. Report of MRI stated that what was going on could be compatible with rheumatoid arthritis. Now it hurt mainly at night and I had absolutely no other signs of rheumatoid arthritis. The orthopedist told me he thought problem was in my neck. I asked if he were going to discuss that with my regular dr. He said "no" because regular dr. only referred me to him for my shoulder. I then told regular dr. what he said. So, regular dr. referred me to rheumatologist--even though orthpedist thought problem was in my shoulder and rheumatologist wanted to rule out anything cancer related--but nothing has been done.
Oh and I forgot about other spine scans. There were 17 films of thoracic spine. Report did not compare it to any others.
Then there is the lumbar spine. That was initially done after sudden onset of sciatic pain one night. It showed cyst or mass. I won't go into run around I got getting test--but it was bad, if not worse than the above. My onc. told me to ask a neurologist for a referral to a neurosurgeon. That was also a run around. I eventually saw neurosurgeon who referred me to spine dr. and spine dr. was 100% sure I had cyst. I had repeat MRI that was stable 3 mos. later. I then started a statin drug and doubled the celebrex to maximum anti-tumor dosage. I had repeat MRI 5 mos. later--now for first time cyst or mass was smaller but no longer had regular borders. Spine dr. was less sure that it was cyst--decided to watch. In the interim it showed up as a hot spot on a bone scan. Now I decided to check it again--5 mos. later. This time radiologist who read it didn't compare it to most recent earlier report but did it to films of 1 year earlier and said it was stable. I asked spine dr. --did it get smaller and bigger again? He told me radiologist don't have to compare all scan reports. I then politely said--but last report and also he had said it was smaller--he then accused me of not trusting him and that I needed to see someone else. He then told me I shouldn't concentrate on this and said I might miss something else. ??? "I" might miss something????
I am sure he was referring to cervical spine. Something weird is going on. I am also concerned about the brain--but that's another story.Now--I did see someone privately who looked at some of the films and said most recent one did not show that it was stable with one a year ago.