Forum Discussion
Jane221
7 years agoMember
Hi @wingman, thanks for your post, it is great to see a researcher asking an open question to those of us affected by this disease about what matters most to us.
There are a few areas where I'd like to see more research done including better management and (hopefully) a cure for lymphoedema; this particular side-effect is a distressing outcome for many and for me, personally, has contributed to ongoing feelings of depression.
The other major area I would like to see more research done in was touched on by @primek, the use of low dose oestrogen for vaginal dryness / atrophy. It feels like our sex lives don't matter, because, hey, we're alive, be grateful, and so all of that stuff gets pushed under the rug but it has a huge effect on our relationships and quality of life.
One final area I'd like to see more work done on is effective lower doseages of hormone therapies such as Tamoxifen, which might reduce the side-effects but still remain effective as many can't cope with the impact of these drugs and often don't continue them at all, putting them at risk for recurrence.
Thanks again for asking. Jane
There are a few areas where I'd like to see more research done including better management and (hopefully) a cure for lymphoedema; this particular side-effect is a distressing outcome for many and for me, personally, has contributed to ongoing feelings of depression.
The other major area I would like to see more research done in was touched on by @primek, the use of low dose oestrogen for vaginal dryness / atrophy. It feels like our sex lives don't matter, because, hey, we're alive, be grateful, and so all of that stuff gets pushed under the rug but it has a huge effect on our relationships and quality of life.
One final area I'd like to see more work done on is effective lower doseages of hormone therapies such as Tamoxifen, which might reduce the side-effects but still remain effective as many can't cope with the impact of these drugs and often don't continue them at all, putting them at risk for recurrence.
Thanks again for asking. Jane