What research should we be doing?
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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.7 -
@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
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@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 .
Cheers3 -
Hi @wingman. Thanks you for your reply and the link to the American study. It's a shame we don't have our own data. I see that density levels in 40-44 yr olds and 45-49 year olds is not that different. It makes me wonder why the rate of BC detection by mammography almost doubles between these two age groups ( BreastScreen Aust Monitoring Report 2012-13 pp.24) and why the mortality benefit of mammography jumps from 5% (40-44) to 30% (45-49) (Cancer Council Australia Breast Cancer/Screening Review) I always guessed it was to do with reduced density at around 45 when many women start to become peri-menopausal. Hmmm.....not sure what to think now!1
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@silba - love your comment welcome to the nuthouse! It certainly does send us nutty trying to fathom how to settle into it all and why the side effects are so damned debilitating!
Here's hoping the researchers are making copious notes from our comments
Take care and hopefully your treatment routine will bring a good outcome!
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@wingman
Re Dense Breasts - is there any research on women who've never been pregnant/had children vs women who've had children? Does having children CHANGE the breast tissue to more or less dense? Does this density lessen as they get older due to breast feeding? I am the former (no kids.) In the old days, breast cancer was also known as the Nun's Disease (as it is assumed that nuns never got pregnant) - and there was a highish number of nuns who developed BC.
To be honest, I find the Breastscreen statement (about NOT informing women of their dense breast tissue) to be very condescending. We are not fools - we can make our own decisions, if we are given the facts.
As it stands today - women with dense breast having a 2 yearly mammogram gives them a totally false sense of security. Most women, given information on their Dense Breast tissue, I would assume, would willingly have the extra tests done, as it sure beats being diagnosed with Stage 3 & 4 cancer or worse still, mets BC.
They MUST be given the choice.
If it was relating to men's testicles - I am sure the info would be passed on to them, quick smart!
It actually says it that it aims to avoid 'unnecessary harms and anxiety' - yet by not advising them, they are actually increasing not only their long term anxiety, but their risk of developing a terminal illness (vs early treatment) as well. WTF?
Who are they, to decide that my Invasive Lobular Cancer was not worth being found early enough to treat - which it was, luckily due to the skill of my GP. It is not a slow growing one that they think we should be happy to live with!
QUOTE:
Currently, BreastScreen Australia does not endorse notifying women of their breast density because of the following concerns:- More scientific evidence is needed to guide decision-making around how to measure breast density.
- It is unclear what women with high breast density, and their doctors, should do to manage their breast cancer screening and breast cancer risk once they have been notified.
- More evidence is required to tailor screening programs to benefit the individual woman. Tailored screening might include more intensive screening of women with higher breast cancer risk, and reduced frequency of screening of women with lower breast cancer risk.
- The program aims to avoid unnecessary harms. Potential harms of breast density notification might include unnecessary anxiety, costly supplementary testing for some women potentially leading to false positives, and finding a slow-growing cancer which would not be harmful during a woman’s lifetime (leading to unnecessary treatment).UNQUOTE
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@wingman I heartily endorse @arpie's post above. I had no idea breast density was a 'thing' until I found out about it here on the forum. It seriously impacted on my treatment decisions yet no doctor specifically raised it with me. I am a grown up with a brain. I find the current attitude (everywhere except in WA where they have found it doesn't increase anxiety, rather it increases the attendance to the regular screening programme) patronising in the extreme.5
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Hi @arpie
Sorry if this is off topic - but I did not know that we are not to find out if our breasts are dense, this makes me a bit annoyed. Do you know who does have this information? eg, surgeon, breast care nurse, oncologist? I think I will go on a mission to find out what I am.1 -
@LIttleBlueWren - I was always told I had 'lumpy breasts' and was advised I had cysts back in the 80s - this was before Breast Screening, I think. I am assuming that even back then, they were 'dense breast tissue'.
Whenever you have a mammogram at BreastScreen, they can see then & there, that some women have more white tissue showing (dense breast tissue) - and as Breast Cancer Tumours ALSO show up as 'white' - mammograms often don't 'see' the tumours that are there as it is 'white on white' & you are sent home with a false sense of security, that you are 'clear'.
But they elect NOT to advise us (at this point in time, only WA does this.)
Here is a post with pics (well worth reading the whole post) Looking at the pics - 'd' and the next one showing a tumour - you can understand why mammograms are not always the best tool for identifying it in Dense Breast Tissue :
https://onlinenetwork.bcna.org.au/discussion/19539/breast-density-workshop-adelaide-papers-online/p3
Here is a thread put up by BCNA about it tho:
https://onlinenetwork.bcna.org.au/discussion/18407/breast-density-we-want-your-input/p1
Many of us are advocating that it is our RIGHT to be advised that we have dense breast tissue when we have our Mammogram, as it is considered more effective to have an ultrasound and/MRI than relying only on a mammogram (which missed my tumours twice in 6 months.)
@wingman is keen that we ARE told .... and gave us this link to read:
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
Your GP & Surgeon 'should' know - assuming they have looked at the films done by Breastscreen, rather than just read the report.0 -
Breast density as it applies to mammograms is definitely a problem. Admittedly my cancer being lobular and high on my chest made it unlikely that a mammogram could have detected it (they didn't) but I did get a call back years before my diagnosis because the radiologist was not happy with the quality of the screen. The nurse at the time told me my breasts had, and I quote, 'more lumpy bits than a kapok mattress.' You can't say shit like that anymore but I'm glad she did. It made me more aware of the limitations of the screens. Without that knowledge and the general mistrust it instilled, I'd be just a plaque on a stone now.
Mind you, those dense breasts were a source of wonder for many years until their elastic broke and they started to resemble two sandwich bags half full of damp sand...
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@millie I agree 100%. The side effects from natural supplements are generally much more manageable. There is a rare Australian tree that Germany is doing research on re. Cancer alternate drug. Why aren't they doing that research in Australia? Take the subsidy research money away from the pharmaceutical companies and give it to someone less interested in making money out of this disease.3
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@arpie NZ developed a great breast density 4 point rating scale that @wingman refers to earlier in this thread. Here is a pic. As you know WA informs women with a letter stating that their breast density has compromised the reading of their mammography images (Level 3 and 4 here). There are not a load of stressed WA women running about flailing their arms around not knowing what to do. The letter suggests that the woman seeks medical advice and has further testing.
Dense breasts is completely normal - 40-50% of women have dense breasts over 50 years of age, and 50-60% (40-49) so imagine how many women are uninformed of the risk that they are carrying around on their chest (higher breast density = greater risk of BC) and think that their mammogram has been successful in clearing them of cancer or finding 'no evidence of disease'. No evidence of bloody anything! Like trying to find a polar bear in a snow storm.
Dr Liz Wylie (Medical Director of BreastScreen Australia) is responsible for the difference over here. Thank God someone is on the ball and believes it is a woman's right to know. I think it is completely negligent to mislead women like this.
Once 3D Tomosynthesis mammography becomes commonplace in BreastScreens across the country, diagnosis rats will increase too. At the moment they are only in assessment (recall) centres here in WA and I think that is true for the rest of the country as well..
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@Sister - yes ultrasound and/or breast MRI is usually better for dense breasts. 3D Tomosynthesis mammography does give better images than standard 2D. If you can imagine the image being cut into thin slices, those slices analysed and then put together as a whole image. It is more costly, not only the hardware, but the reading of the images takes a lot longer too. @wingman - please correct me if I am wrong, I am always learnng
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3D mammography is a big step forward, my surgeon is a very satisfied man since getting his new equipment!1
This discussion has been closed.