What research should we be doing?

Hi @wingman

Lots of good suggestions. What plagues everyone of course is what caused my cancer and could I have done something to avoid it? For those with a high family incidence, there is a clearer if unhelpful answer, but many people castigate themselves for doing (or not doing) all sorts of things that may have made little difference. If cancer is caused by a cluster of triggers coming together, we may still not be able to answer this for some time yet. But the 'possible trigger' vs 'bad luck' debate may limit the adoption of better preventative actions when the benefits are still uncertain.

I’d like to know what we can do ourselves to mitigate the blues many of us feel from diagnosis to treatment to survivorship. I have a feeling exercise might play  a major role in this by releasing feel good hormones to counter despair.I chose to walk daily for an hour primarily to counter joint pain from Letrozole but think it had bigger impacts on my well being than just that - it improved my mental health as well.Also what role dietary modifications can make to our lives.

Also what is the position about taking Calcium/vit D supplements if on aromatase inhibitors esp if Prolia injections become necessary due to osteoporosis ?

Hi @wingman,    I agree with what has already been so aptly covered from the other members here.  My only thing I guess I would like to learn more about is being triple negative and where are we at with research on this topic and how closer we are to any understanding of it. 

Tamoxifen - some health professionals believe (and advise BC patients) that recurrence doesn't happen if you take it. 

Sadly, this is not the case with some of our members - some not only with recurrence, but now with Mets.

What research is being done on following the recurrence rate after taking Tamoxifen (and the other Hormone meds as well!!)

At the risk of meandering a little, I would like to acknowledge what @"Patti J" has said.  I can only speak as someone who was diagnosed and treated for Stage 2 - surgery, chemo and rads and currently, at 12 months post-diagnosis, NED.  I cannot speak to the experience of someone who has not had that treatment and has been diagnosed with a cancer that can only be managed rather than treated.  (I don't know if that is Patti J's experience or not.)  I realise there is a vast difference there and that it is not talked about much.  So, one size does definitely not fit all.

Many of us, no matter our staging, given the rate of bc in our communities, have watched a close family member (genetic issue or not) or friend go through this and not survive.  Some of us carry the spectre of that person, still grieve for that person, and find it difficult to believe that this is not also our fate - they are with with us through this.

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 

* Recognise that everyone with breast cancer is different.

* Stop making blanket statements about the value of certain treatments such as Tamoxifen. It isn't a cure all.

* Much much more research into why people get stage 4 breast cancer.

* Find a cure for stage 4 breast cancer.

* More research so that stage 4 drugs are less expensive.

* More education about what stage 4 cancer is.

* Acknowledgement that not all cancer patients have mental impairment.

* Actually do something. Don't  just talk about it.

Welcome @wingman (although it's a different welcome than the one I usually give).  Everyone has gotten here before me with things that are important and my concerns are very similar:

• impact on mental and physical health from joining a support group such as this
• isolation (physical or mental) after diagnosis
• economic/social benefits of exercise/recovery programmes during treatment - should they be funded
• emotional/economic issues of cognitive impairment as a result of diagnosis/chemo - impact on getting back to work
• ongoing issues with physical recovery after treatment (general weakness, tiredness, cording, pn) and programmes to improve health - social/emotional/economic benefit of long-term programmes for physio, exercise and relaxation - should these be funded/heavily subsidised?
• better understanding of impact of hormone therapy - aches, vaginal dryness, etc - and treatments
• causes of recurrence
• better detection methods for both survivors and general public
• teaching our daughters (and sons) about surveillance
• acceptance of yourself as a survivor - too many studies seem to see it as just a sexual body image (having breasts) rather than the difficulty of accepting the whole package.  Not having breast/s is just the obvious physical manifestation.
• some people have had wonderful bc nurses who have helped co-ordinate services and provide a lot of information when needed.  This is not the case for most of us.  

Much of this is a rehash of what others have said.  There was something else I had thought of while I was typing but it's gone (the cognitive impairment is very real).

Hi @wingman, it’s great to see some of the developments in cancer research and their impact on people with cancer and survival rates. Thank you to you and all researchers for your continued hard work. 

I’ve been thinking about your question. I’d love to see some more research into the psychosocial aspects of chemotherapy and cancer treatment more broadly. Chemo was a very lonely experience for me. I wore cold caps and I couldn’t hear very well, or listen to music. I felt a million miles from everyone. Just writing this 4 years later makes me cry. I wanted to write a letter at the time to let the nurses know how I felt, but I felt a bit powerless and didn’t want to be seen as the difficult patient. 

Perhaps a closer look into the benefits of music and massage during chemo might be good, along with encouraging small groups to get to know each other a bit. Another idea I have is to look further into the role that online technology can play in promoting mental health and wellbeing during treatment. Keep up the good work. Research is helping people to survive cancer in greater numbers and has the possibility of promoting a better quality of life for people undergoing cancer treatment and for survivors.