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Kaye · 02-25-2007, 01:16 PM

Hi Chelee, just wanted to say that after reading your posts I had some thoughts about what might be going on. Perhaps your onc doesn't feel confident about what she does or doesn't feel and whether or not that is significant. Another thought, even if she did feel something--perhaps it is policy only to dx on basis of scans. Would it be possible to get a 2nd opinion?
From my experience w/bc I have learned that dx of mets seems to be a somewhat complicated process for which there does not appear to be a standard protocol or procedure. Some of what I am about to share is not exactlty related to what you have experienced but exemplifies some of the complexities re. dx. of mets.
There was a time when I was experiencing horrific shoulder pain, and 3 different dr's told me they felt swollen node(s) under that arm (non-malignant side). I also had a bone spur appear on the shoulder. I was given alot of mixed info. Oh, and a tech reported that my bone scan showed "unusual hot spots."
One of the dr's to whom I was 'erroneously' sent--a rheumatologist (and that was because the mri said what I had could be compatible with rheumatoid arthritis--even though the symptoms did not correspond with that--and did correspond with what one would feel if one did have bone mets), because the rept. mentioned that, I was sent to see the rheumatologist. The rheumatologist was horrified when she heard my story. She said the most important thing involved whether or not the cancer was back. She tried to order a new mri which even showed the lymph nodes. That order was somehow altered--despite letters and phone calls to correct. The MRI was eventually done but did not show that area. I learned that after another MRI had been done and report said it was unable to compare lymph node area because the MRI that was supposed to have shown that did not. In fact, that MRI was done with a special screen so that area would not be shown. Too weird.
Meanwhile, my onc (or should say former onc) wrote a letter to the rheumatologist. She said that she was basically ordered not to order any more scans because "she" did not know how to interpret them.
There is a lot more which includes fact that I was sent to my primary care dr. who initially gave me shots of cortisone before finally sending me to orthopedist who ordered MRI. The orthopedist said he did not think that I had rheumatoid arthritis and thought the pain was coming from something in my neck. When I asked if he was going to discuss t hat with my primary care dr., he said "no," because the MRI was for my shoulder. So, I told that to my primary care dr., and he sent me to the rheumatologist (because the rept had mentioned rheumatoid arthritis--which I did not and do not have). And, when she tried to help, she figuratively got her hand slapped.
Welcome to the world of "Managed Care--NOT. Now, realistically speaking I am not sure what was done was best or not. I am being treated as if something is going on--even if not yet declared. Perhaps with the convoluted insurance laws in our state, this may be the best option that I have to get certain treatments at this point in time.
What the dr's have to deal with re. insurance is absurd. That's a whole 'nother issue. Here, where I live, it's almost a 'catch 22' situation. Bottom line, though--I was given Herceptin (supposedly out-of-protocol), although I am not so certain it WAS out-of-protocol, BUT I AM still around to share my story.
On another note--around the time I was dx'd--or a little before (or even a little after), another gal who is insured by same 'non-profit' hmo was dx'd with similar type of breast cancer. She had a CT scan which was clear. (Mine showed a lesion in the liver--never quite identiified). She went to an advocate who recommended full body MRI. That showed cancerous lesion(s) in her liver. She received treatments for that. Well, about a year and a half ago, her husband shared that he was writing his last post to the involved news group he was on. It had been a year since his wife had passed away, and he was getting remarried.
I guess there are lots of ways to evaluate. Would she still be around if liver mets had been dx'd at a later time? Or would she still be around if she had had a different treatment--i.e. some type of focused radiation or even surgery--which is not standard protocol for liver lesions for bc mets? If she had gone through a different type of insurance she may have been able to have gotten a different type of treatment. However, if it is not standard protocol, and the involved medical facility does not do this treatment, they are not required or held liable to diagnose. If any of the above could be a possiblitiy, perhaps the involved protocol used by the medical facility, was the best that they could have used to extend her life--not necessarily the best of treatments--but the best THEY could offer at the time for which they would be accountable.
I have spent a great deal of time over the past almost 6 years trying to learn everything I can about breast cancer. I have become both outraged and humbled by what I have learned. Things may be very unfair--about who gets what and when. The dr's themselves don't always know. There is no sure way to predict how one will respond. Even dr's don't always get the 'best' treatments or have the 'best' of options available. Some do. Some don't. Even with the 'best' of treatments, cancer can recur. And, just maybe, there are better ways to treat that have not yet been fully researched.
Once metastases are dx'd I was told that I would receive only "paliative" care which appears to be consistent with currently approved treatment protocol. In other words, I could not receive surgery that would be aimed at extending my life nor even one that could possibly 'cure.' There are politics involved--there has to be because of all that is required--establishing 'protocols' for a given type of cancer is just one example which involves so many different aspects. I, myself, am involved in something, presumably related, that seems to have 'political' overtones, which is too complicated, overwhelming, and seemingly unfathomable to get into here at this time.
Chelee, again, I am sorry that you are having difficulties with your oncologist. You might be more comfortable getting a 2nd opinion and/or switching dr's. My best thoughts are with you, and I hope my 'monologue' wasn't too boring, overwhelming, or strayed too far from your concerns.
Off to get more 'real' work done...

02-25-2007, 01:16 PM	#18
Kaye Senior Member Join Date: May 2006 Posts: 52	Hi Chelee, just wanted to say that after reading your posts I had some thoughts about what might be going on. Perhaps your onc doesn't feel confident about what she does or doesn't feel and whether or not that is significant. Another thought, even if she did feel something--perhaps it is policy only to dx on basis of scans. Would it be possible to get a 2nd opinion? From my experience w/bc I have learned that dx of mets seems to be a somewhat complicated process for which there does not appear to be a standard protocol or procedure. Some of what I am about to share is not exactlty related to what you have experienced but exemplifies some of the complexities re. dx. of mets. There was a time when I was experiencing horrific shoulder pain, and 3 different dr's told me they felt swollen node(s) under that arm (non-malignant side). I also had a bone spur appear on the shoulder. I was given alot of mixed info. Oh, and a tech reported that my bone scan showed "unusual hot spots." One of the dr's to whom I was 'erroneously' sent--a rheumatologist (and that was because the mri said what I had could be compatible with rheumatoid arthritis--even though the symptoms did not correspond with that--and did correspond with what one would feel if one did have bone mets), because the rept. mentioned that, I was sent to see the rheumatologist. The rheumatologist was horrified when she heard my story. She said the most important thing involved whether or not the cancer was back. She tried to order a new mri which even showed the lymph nodes. That order was somehow altered--despite letters and phone calls to correct. The MRI was eventually done but did not show that area. I learned that after another MRI had been done and report said it was unable to compare lymph node area because the MRI that was supposed to have shown that did not. In fact, that MRI was done with a special screen so that area would not be shown. Too weird. Meanwhile, my onc (or should say former onc) wrote a letter to the rheumatologist. She said that she was basically ordered not to order any more scans because "she" did not know how to interpret them. There is a lot more which includes fact that I was sent to my primary care dr. who initially gave me shots of cortisone before finally sending me to orthopedist who ordered MRI. The orthopedist said he did not think that I had rheumatoid arthritis and thought the pain was coming from something in my neck. When I asked if he was going to discuss t hat with my primary care dr., he said "no," because the MRI was for my shoulder. So, I told that to my primary care dr., and he sent me to the rheumatologist (because the rept had mentioned rheumatoid arthritis--which I did not and do not have). And, when she tried to help, she figuratively got her hand slapped. Welcome to the world of "Managed Care--NOT. Now, realistically speaking I am not sure what was done was best or not. I am being treated as if something is going on--even if not yet declared. Perhaps with the convoluted insurance laws in our state, this may be the best option that I have to get certain treatments at this point in time. What the dr's have to deal with re. insurance is absurd. That's a whole 'nother issue. Here, where I live, it's almost a 'catch 22' situation. Bottom line, though--I was given Herceptin (supposedly out-of-protocol), although I am not so certain it WAS out-of-protocol, BUT I AM still around to share my story. On another note--around the time I was dx'd--or a little before (or even a little after), another gal who is insured by same 'non-profit' hmo was dx'd with similar type of breast cancer. She had a CT scan which was clear. (Mine showed a lesion in the liver--never quite identiified). She went to an advocate who recommended full body MRI. That showed cancerous lesion(s) in her liver. She received treatments for that. Well, about a year and a half ago, her husband shared that he was writing his last post to the involved news group he was on. It had been a year since his wife had passed away, and he was getting remarried. I guess there are lots of ways to evaluate. Would she still be around if liver mets had been dx'd at a later time? Or would she still be around if she had had a different treatment--i.e. some type of focused radiation or even surgery--which is not standard protocol for liver lesions for bc mets? If she had gone through a different type of insurance she may have been able to have gotten a different type of treatment. However, if it is not standard protocol, and the involved medical facility does not do this treatment, they are not required or held liable to diagnose. If any of the above could be a possiblitiy, perhaps the involved protocol used by the medical facility, was the best that they could have used to extend her life--not necessarily the best of treatments--but the best THEY could offer at the time for which they would be accountable. I have spent a great deal of time over the past almost 6 years trying to learn everything I can about breast cancer. I have become both outraged and humbled by what I have learned. Things may be very unfair--about who gets what and when. The dr's themselves don't always know. There is no sure way to predict how one will respond. Even dr's don't always get the 'best' treatments or have the 'best' of options available. Some do. Some don't. Even with the 'best' of treatments, cancer can recur. And, just maybe, there are better ways to treat that have not yet been fully researched. Once metastases are dx'd I was told that I would receive only "paliative" care which appears to be consistent with currently approved treatment protocol. In other words, I could not receive surgery that would be aimed at extending my life nor even one that could possibly 'cure.' There are politics involved--there has to be because of all that is required--establishing 'protocols' for a given type of cancer is just one example which involves so many different aspects. I, myself, am involved in something, presumably related, that seems to have 'political' overtones, which is too complicated, overwhelming, and seemingly unfathomable to get into here at this time. Chelee, again, I am sorry that you are having difficulties with your oncologist. You might be more comfortable getting a 2nd opinion and/or switching dr's. My best thoughts are with you, and I hope my 'monologue' wasn't too boring, overwhelming, or strayed too far from your concerns. Off to get more 'real' work done...