Seeking your topic suggestions for our upcoming conferences
Comments
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Think that’s where a good support person if available would come in handy @Beryl C. However must be harder to get a hearing in public system as no choice of specialist.
Am appalled @Temple about how insensitive your treating staff have been.Can you change team/ even hospital ? I didn’t feel comfortable with my medical onc and have my surgeon as primary caregiver as I made him aware of my concern.
Fundamentally we are the customer and two things come to mind 1) the customer is always right/ dollar votes and 2) caveat emptor / buyer beware - research if you can medical providers.But that presupposes we have the strength to act at diagnosis or a support person who will.3 -
I’m scared that we women (persuaded through fear ) to undertake hormone treatment are guinea pigs again,
I struggle to find real evidence that hormones are worth it - side effects seem to outweigh potential unknown benefits, especially if you have pre existing conditions - heart and osteoporosis.Eg it appears HRT was a dangerous risk for many ,2 -
Personally I don’t think my oncologist is playing games. His research credentials are excellent and he genuinely believes that hormonal therapy (ie blocking some hormones) gives me a better chance of not having cancer again. BUT (and it’s a big but) only I can decide if the side effects are too disrupting to my life to follow that course. No treatment so far is sure fire. All are educated attempts to control a difficult and complex condition. The experiences of treatment can be downright awful. Fear, anxiety and the conviction that no-one is actually listening aren’t the basis for confidence. In that frame of mind, changing doctors if yours won’t engage in useful and informative discussion, can be just too hard. But inch by inch we are getting better at treating cancer (in terms of survival). Medical practice is already having to adjust to vocal patients who don’t just want to accept what they are told, but be provided with information, statistics and research. And yes, a lot of them are older women! I can accept being an early adapter, if that helps work out how cancer works. Best wishes.5
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Both my BS and oncologist have been comfortable about addressing the quality of life issues versus the benefits of taking the AI for the full length of time prescribed.
I'm comfortable with and acknowledge that medical care is not perfect but the best available we have now. Ultimately it's our body, our life, and we have the right to say no. I have a friend in her 40s who has Stage 4 bowel cancer. As well as chemotherapy she has pursued a considerable number of alternative therapies. Now, with her tumour markers well down, and against her oncologist's advice, she has decided to stop the chemo. Only time will tell what happens, but it's her right, her body, her life and as much as I disagree with it, I respect her decision.
Take care, K xo0 -
I think they should be discussing making cannabis more easily available to people undergoing cancer treatment.2
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I agree.
I think it could be a good topic for a BCNA conference. I've read that there are studies that say it inhibits the growth of cancer cells, but the two doctors I did the webinar with flat out said there was no evidence. And what about the CBD oil etc? Ease of access? Validity of use to relieve side effects of chemo and AIs? Is it a niche product or a growing area of complementary medicines that oncologists are becoming more comfortable with? Recently I went to a breast cancer fundraiser and the oncologist there was asked a question about the legal use of cannabis & cannabis products. She said that based on the anecdotal evidence from her patients she was open to it and felt that as a cohort, oncologists were increasingly on board. As medical marijuana is now legal in some parts (or all?) of the country, it'd be good to hear about its application in our corner of the medical world.4 -
Perhaps a reflection of highlights from the Texas conference
Need for patient advocates
For research
For queries on complaint management
Research Advocates this is on the agenda for the conference I saw pod cast on the us breast cancer org site1 -
I think it would be great if there was more discussion around Cold Therapy as a means to prevent peripheral neuropathy in Taxane chemotherapies like Paclitaxel and Doxacetal. I think the anecdotal evidence is overwhelming that this helps lessen or even prevent the development of sometimes life altering neuropathy. My post on Tests and Treatments has links to many of the studies and personal experience and overseas forums where this idea is taking hold.2
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I am totally with @Kmakm and everyone else about the hormone therapy. This is such a long term haul. It can cause severe depression, not only the drug itself but the mere thought of a decade of perservering with it and feeling like someone else is driving your body. It's all good to say dress in layers for hot flushes.
We are not 4 and can work that out for ourselves. That just doesn't cut it when they are that crippling you are litterally scared of wearing the wrong clothes to work and ready to kill anyone that moves your desk fan.
The impact on peoples lives can be far worse than what any of the rest of the treatments can dish out.
We are left to our own devices to work out what helps and what doesn't. People trying every supplement, antidepressents, sleeping tablets and all sorts of pain killers without truly knowing whether or not they should or shouldn't be taking some of these things. Here take this pill to compensate for that pill but don't take that one because we don't know.
I would like to see a lot more study done on phytoestrogens. What if they don't interfere with these drugs and it's as simple as taking an off the shelf normal menopause supplement to help? Maybe they will, maybe they won't at least we would be able to try. I am sure that would help the very high drop out rate.
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Thanks everyone for your comments and suggestions, they will be a great help for program development!0
