What research should we be doing?

Patti J

* 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.

Jane221

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 

Sister

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.

arpie

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!!)

kitkatb

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. 

Romla

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 ?

Afraser

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.

wingman

Wow I'm really overwhelmed by these responses, thank you for this. There is a lot to take in, this will take me a while. A few themes coming out though about side effects of hormone therapy, emotional well being, stage 4 cancer, and increased understanding/education for health professionals. I will have a think and a chat to my colleagues about these. I work with a group who are interested in how estrogen affects the brain, their research is unrelated to breast cancer treatment, but I wonder if they might have a fresh perspective on the "brain fog".

And breast density has come up too. If you are interested in where we're at with density notification in Australia please have a look at the summary we put together https://www.informd.org.au/density-notification.html

Jo, thanks for the link to your campaign about mammography screening for women under 50, I will have a look at it. Yes, density is part of the problem here - dense breasts are more common in younger women and this lowers the sensitivity of the mammogram. You asked about Australian stats, we don't have statistics on frequency of different breast density categories in Australian women, we have to rely on American data https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4200066/. If you follow the link here you can download a PDF of the article. Figure 1 shows the prevalence of density categories broken down by age groups. In women aged 40-44, 13% have D density (extremely dense), 44% have C (heterogeneously dense). In women aged 45-49, 12% have D and 43% have C.

Breast cancer survivors have been changing the world for decades in so many ways. They are the reason why we have foundations such as National Breast Cancer Foundation who have been enormously successful in driving the research forward. BCNA, founded by Lyn Swinburne, is an organisation with a very strong advocacy voice nationally. And of course the dearly missed Nancy Cappello, who was the inspiration behind the first breast density notification law in the USA. I do hope you are aware of the power you have as individuals and as a collective.

Please keep writing in your suggestions.

Zoffiel

Independent longitudinal studies about the effects of the drugs we are given.

In addition to the cytotoxics, is anyone seriously looking at the long term effects of things like colony boosters, for example,  (which have only been on the PBS for a few years) and the contraindications of long term medications ie: heart meds which are taken through chemo treatment. The information about AI is patronising at best, and appears dishonest at many other levels.

Leaving all that up to Big Pharma is risky given that Australia is a proven dumping ground for medications and treatments (not just cancer related) that are not approved, or have had approval withdrawn, in other parts of the world. Of course, there is a reluctance to bite the hand that feeds us. Better ruined than dead, perhaps?

smokie08

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. 

[Deleted User]

@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. 

kezmusc

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.
 

Patti J

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. 

TonyaM

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

iserbrown

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