What research should we be doing?

@wingman,
  I have stage 4 mets cancer, done the 6 months chemo, bilateral mastectomy ,off to radio on chest and hip area next week for 5/6 weeks , already on crappy Tamoxifen and Xgeva .

  Still no one will tell me a full treatment path, a cure would be great and we are all putting our faith that all the crap we go through gets noted and improved medication that don't force early menopause on, that the medication doesn't have worse side effects that the original cancer symptoms that are ongoing and seem to mutate from week to week.

 Pain relief that is available overseas needs to get adopted here ( medicinal hemp) , I am lucky that while just turned 50 my kids are grown and my husband is taking the financial burden on solely while I go through treatment, but what is the long term outlook is very unknown as living with mets is the roll of a dice how long you have or how the cancer responds , my one is resistive to chemo , so a bit of research into why that is would be great. 

 Reports even debunked research needs to be available , while it may not be liable for the majority , the individual that it may help never hears of it, or the treatment is deleted as not been beneficial enough.

I'm sure you will hear a lot more from a lot of us , welcome to the nut house .

Cheers 

@wingman thank you for your interest and reaching out. I’d like the medical profession to be more accepting/informed of more natural alternatives or inclusions to a treatment plan. 

I was was given an 88% chance of making 10 years, not all that comforting when you’re 42 and your grandmothers lived to their 90s, but if I undertook chemo and hormone therapy then I might bump this up to 90%. So, my medical team were prepared to put my body through chemo and HT for a less than 2% maximum benefit!

There are published studies showing the benefits of vitamin d, flaxseed, and other natural products on cancer prevention, and reducing tumour size. 

Now, I know I’ve been vitamin d low for years. What if this had been addressed as a priority years ago? 

Some may say the studies are too small, so make them bigger! Then there is the whole other issue of medical studies that get abandoned and no report released. Like the study in giving Tamoxifen to women without BC and seeing how beneficial this would be. Research abandoned. No report released. 

Some may say that there is no money in natural products, so little or no research can be done. But let’s look at the cost to the taxpayer if I had undertaken chemo, taken other drugs to manage the side effects. Then the cost of 10 years on HT.  Both of these treatments can cause a host of problems that then need to be checked for and managed. Much cheaper on the taxpayer if someone would say, get your vitamin d levels up, a bit of ground flaxseed on breakfast is a lot better on quality of life. 

Sure, maybe the vitamin d supplement and flaxseed will make no difference to my 10 year outcome, but imagine if they made a 2% or more benefit. They’d be beating the toxic alternatives and kinder on my body.

Best of luck with your research 
xx

Dear @wingman, Thank  you very much for inviting BCNA network members to contribute our thoughts on research needed into breast cancer issues.
My request would be that a national, comprehensive system be developed to record effects of treatment; whether that be recovery from surgery, chemotherapy side-effects and hormone treatment side-effects.
This information could be linked to other information  about types of breast cancer, recovery, re-occurence and patient well-being. This could then lead to more tailored treatment and better treatment and survival rates, and avoidance of some of the horrible nasty side-effects.
Best wishes for your work.

I agree with @TonyaM a common denominator Stress!
Could constant stress be a contributing factor 

The other area of interest for me -what are the after effects of 10 years of hormone therapy?  Once in this regime side effects rear and some are ugly and debilitating yet we are encouraged to keep going and or try a different medication, to hopefully stave off recurrence so what long term effect will I have to live with

Thanks for the opportunity 

Hi wingman,
great to have you here.I’ve had bc twice since 2003 so lots of time to ask questions and meet lots of wonderful women on the bc journey.
* I can’t understand why stats aren’t kept on metastatic bc
* I suspect the stats/%on bc recurring in the same Breast after a lumpectomy is a lot higher than I was told back in 2003
*Could there be a genetic propensity to develop bc if there is strong family history of any cancer?
* Could constant stress be a contributing factor to bc developing?
Tonya

Having lost my mum to Alzheimer's disease 30 years ago, when she was only 67, the symptoms you describe, @kezmusc, are nothing like hers. 
I took Tamoxifen for 5 years. Since then, I  have successfully completed two university degrees.
The issue I have with Tamoxifen, is as I posted earlier, the fact that some breast cancer researchers claim that it stops breast cancer recurrence. 

Thank you @wingman.  May I just add a little to the brain fog issue?  Verbal memory and I think they call it executive functioning is impacted as well.  For example,  mixing two words together, losing words totally, starting a sentance and then just forgetting what you were going to say half way through. There are a lot of us around here describing every day items as the thingamajiggy or whatchamacallits.
  Multi tasking is sometimes very difficult and the ability to focus under pressure is regularly non existant.  This leads to being anxious because you can't think and feel like a complete idiot and then the worry makes it worse.  There have been times I have had to leave my desk for 10 minutes until I can think again.  There are days I choose not to drive because I don't trust my own judment. There are times I do not participate in conversations because I am bound to say something stupid or completely forget things that I know I know.   Within a week to 10 days of not taking Tamoxifen I am back to very close to perfectly normal.  It's a whole lot more than being a bit foggy. My biggest fear (apart from recurrence) is that we find out down the track it leads to early alzheimers or dimentia because that's sure what it feels like at times especially as we are now being advised to take these things for 10 years instead of 5.
 

@wingman the research into how estrogen affects the brain sounds interesting. As someone who was diagnosed at a younger age and has given up Tamoxifen because of the side effects, this is a relevant topic. Thanks for taking the time to reply to us all. There is still so much that is unknown about cancer. 

Hi @wingman as @KitKat said I would also like more research done into triple negative as it feels like we are in the lap of the gods  after active treatment has finished.