HER2 Support Group Forums - View Single Post - New Discovery Health Channel Show About Early Stage Breast Cancer (Including Her2+)

AlaskaAngel · 02-26-2008, 01:55 PM

Cynthia,

I wish something like this would have been available when I was diagnosed 5 years ago, even though a lot less was known then in offering patients choices in therapies. Back then there was no Adjuvant available, there was no Herceptin except for those eligible for clinical trial (which left out many early stage patients entirely), and there was no Oncotype Dx for any patients to use. The AI's were only used for metastatic bc. I'm thankful that you shared this online access with people here so they can get past some of the complexities and confusion at time of diagnosis.

The patients in this presentation are to be deeply admired for sharing the very personal nature of their disease.

As with many such introductions, there is still room for improvement and I hope my comments will be accepted in that light. Although it isn't possible to include everything in such a limited discussion, I still think it is grossly unreasonable to that the issue of sexuality continues to be left out at the very time when decisions are being made that often have a major impact on quality of life. Consider, for example, those for whom all of the best-intentioned therapy still leaves the patient not benefitting from any of it, bald, sick, and also then having to deal with the loss of sexuality due to treatment that everyone "forgot" to mention. How betraying that belated discovery is. If one considers only those patients portrayed in the Discovery program who never mentioned any aspect of sexuality it is much easier to think "that won't happen to me" or "it will just mean cessation of periods" because there is no mention at all about it. I do want to thank Dr. Goldstein for continually emphasizing throughout the presentation the importance of genuine patient participation in the decision-making process. I think the program would have been vastly more credible if even just one of the physician panel would have emphasized specifically (even if only briefly) the importance of full disclosure and discussion with the patient about what is known and what isn't in regard to sexuality after treatment.

Even so, I think the presentation is very well done and very valuable.

Sincerely,

AlaskaAngel

02-26-2008, 01:55 PM	#11
AlaskaAngel Senior Member Join Date: Sep 2005 Location: Alaska Posts: 2,018	Decisions Cynthia, I wish something like this would have been available when I was diagnosed 5 years ago, even though a lot less was known then in offering patients choices in therapies. Back then there was no Adjuvant available, there was no Herceptin except for those eligible for clinical trial (which left out many early stage patients entirely), and there was no Oncotype Dx for any patients to use. The AI's were only used for metastatic bc. I'm thankful that you shared this online access with people here so they can get past some of the complexities and confusion at time of diagnosis. The patients in this presentation are to be deeply admired for sharing the very personal nature of their disease. As with many such introductions, there is still room for improvement and I hope my comments will be accepted in that light. Although it isn't possible to include everything in such a limited discussion, I still think it is grossly unreasonable to that the issue of sexuality continues to be left out at the very time when decisions are being made that often have a major impact on quality of life. Consider, for example, those for whom all of the best-intentioned therapy still leaves the patient not benefitting from any of it, bald, sick, and also then having to deal with the loss of sexuality due to treatment that everyone "forgot" to mention. How betraying that belated discovery is. If one considers only those patients portrayed in the Discovery program who never mentioned any aspect of sexuality it is much easier to think "that won't happen to me" or "it will just mean cessation of periods" because there is no mention at all about it. I do want to thank Dr. Goldstein for continually emphasizing throughout the presentation the importance of genuine patient participation in the decision-making process. I think the program would have been vastly more credible if even just one of the physician panel would have emphasized specifically (even if only briefly) the importance of full disclosure and discussion with the patient about what is known and what isn't in regard to sexuality after treatment. Even so, I think the presentation is very well done and very valuable. Sincerely, AlaskaAngel