HER2 Support Group Forums - View Single Post

07-10-2005, 11:42 AM

<<I would hate messages such as this one to decrease the amount of funding given agencies by the public. If anything, you might "think before you pink" at Wal-Marts and such who sell bc items strictly for profit. If you want a pink ribbon, buy it from a respected non-profit. I made the mistake recently of buying a pink magnetic car ribbon from a retailer. It faded to white after the first car wash. As did the contribution I didn't make.>>

I agree. I do see a need for activism, though, in a vatiety of other areas. One is the inequality of treatment--in terms of follow-up and even getting a 2nd opinion--at least in California. A 2nd opinion is only as good as your insurance. The same applies to tests that are given for follow-up. I was at a conference for physicians and that was mentioned--to which the rest of the audience gave a 'nervous'-sounding laugh.

As far as treatment options--some hmo's go out of their way to avoid testing for and showing all that is going on. They ARE allowed to do that because if they don't offer the treatment (if it isn't standard) then they don't have to test for it or even show that it is going on.

The other area involves dx of metastases. There is no standard protocol for such and/or at what point to begin treatment. How is it that some are dx'd with bone mets from a single hot spot--and are then given curative and prophylactic treatment whereas others are told that what they have is 'arthritic' activity that may also show up on scans the same way--and these people are not given dx of mets until they have what is called a super scan and the mets are throughout most of their body.

Another area involves the dx of brain mets. I would think that was 'standard' but no. At our hmo I was told by the oncologist that it dx'd if one has an unrelenting headache that won't go away or other severe, interfering symptoms. I asked about different radiation treatments and was told that was NOT done. Huh??? They don't dx small individual areas of mets and don't bother with gamma knife treatments. That also is ignored until symptoms are so debilitating that prognosis is not good--but it IS cost effective in terms of their outlay of treatment. The same is true for those on medicare.

Technically, treatment SHOULD be no different. Aids activists made a dent in the system with their strategies and lobbying. They get all the latest treatment options at minimal, if any cost--often 50 cents per dose. Whereas new treatments are often not approved universally for b.c. because of the cost--look at Xeloda, and until recently, Arimidex. Then there is the cost of drugs such as Neulasta--$6,500.00 per injection with a copay of 20% (twelve hundred dollars) if one is fortunate enough to be offered it.

Then there are the differences in aims of treatment between cancers. There are too many women with breast cancer for them to all be given optimal treatment(s). There ARE researchers working on treatment and cures--prompt delivery of what IS already available is not being offered to all. In fact, one can't even get it in some areas if they are willing to pay f or it. Activism is definately needed in some areas--but not to take away from the research and work that is already being done--would not want to see that compromised.

07-10-2005, 11:42 AM	#5
Kaye Guest Posts: n/a	<<I would hate messages such as this one to decrease the amount of funding given agencies by the public. If anything, you might "think before you pink" at Wal-Marts and such who sell bc items strictly for profit. If you want a pink ribbon, buy it from a respected non-profit. I made the mistake recently of buying a pink magnetic car ribbon from a retailer. It faded to white after the first car wash. As did the contribution I didn't make.>> I agree. I do see a need for activism, though, in a vatiety of other areas. One is the inequality of treatment--in terms of follow-up and even getting a 2nd opinion--at least in California. A 2nd opinion is only as good as your insurance. The same applies to tests that are given for follow-up. I was at a conference for physicians and that was mentioned--to which the rest of the audience gave a 'nervous'-sounding laugh. As far as treatment options--some hmo's go out of their way to avoid testing for and showing all that is going on. They ARE allowed to do that because if they don't offer the treatment (if it isn't standard) then they don't have to test for it or even show that it is going on. The other area involves dx of metastases. There is no standard protocol for such and/or at what point to begin treatment. How is it that some are dx'd with bone mets from a single hot spot--and are then given curative and prophylactic treatment whereas others are told that what they have is 'arthritic' activity that may also show up on scans the same way--and these people are not given dx of mets until they have what is called a super scan and the mets are throughout most of their body. Another area involves the dx of brain mets. I would think that was 'standard' but no. At our hmo I was told by the oncologist that it dx'd if one has an unrelenting headache that won't go away or other severe, interfering symptoms. I asked about different radiation treatments and was told that was NOT done. Huh??? They don't dx small individual areas of mets and don't bother with gamma knife treatments. That also is ignored until symptoms are so debilitating that prognosis is not good--but it IS cost effective in terms of their outlay of treatment. The same is true for those on medicare. Technically, treatment SHOULD be no different. Aids activists made a dent in the system with their strategies and lobbying. They get all the latest treatment options at minimal, if any cost--often 50 cents per dose. Whereas new treatments are often not approved universally for b.c. because of the cost--look at Xeloda, and until recently, Arimidex. Then there is the cost of drugs such as Neulasta--$6,500.00 per injection with a copay of 20% (twelve hundred dollars) if one is fortunate enough to be offered it. Then there are the differences in aims of treatment between cancers. There are too many women with breast cancer for them to all be given optimal treatment(s). There ARE researchers working on treatment and cures--prompt delivery of what IS already available is not being offered to all. In fact, one can't even get it in some areas if they are willing to pay f or it. Activism is definately needed in some areas--but not to take away from the research and work that is already being done--would not want to see that compromised.