Annoyed with lack of services and advice for young women
I don't know if anyone wants to take me up on this but since being diagnosed last year with breast cancer and being classified as "young" due to me being under 50, I am getting increasingly annoyed with the lack of services and advice for young women. This is despite there being a number of reports recently being released - including the Australian Institute of Health and Welfare report last year.
Since my diagnosis I have found out that I was entitled to free mammograms since the age of 40 - at no time did my doctor mention this to me, not even during routine pap smears.
I know of someone under 40 with a family history who is not entitled to a free mammogram or scan - and unfortunately she is not able to pay for these herself.
I am also getting increasingly annoyed that basic breast health, including self examination is not taught in schools - even senior level. This, I confess, has been raised due to my ignorance about breast health and the mis-belief that breast cancer is an "old lady's disease".
The above report states that "When looking at breast cancer in young women, we see a higher proportion of very large breast cancers (>=50mm) diagnosed (8%) than in older women (6%). Very large breast cancers are associated with lower survival than small breast cancers (<15mm)."
I want to do something about this - even if it is to raise awareness that breast cancer does occur in young women and more often than not, the types of cancers we get tend to be more aggressive. As mammograms may not be reliable in picking up tumours in young women due to dense breast tissue, the next best solution is self-examination and awareness which really needs to be taught from a school age.
I consider myself lucky in that my cancer was caught early so I want to make this experience really count. My current bee-in-the-bonnet is that as a writer, I would like to put together a book about breast cancer in particular for the younger woman for maybe use in schools and who knows, maybe BCNA would be interested in including it in their packs. I am hoping to be speaking at ta women's conference in November about breast cancer which should be interesting as Susun Weed, American author of the 1990s book "Breast Cancer? Breast Health" will be in attendance. I have her book and while I do like it, I took that "cut, poison, burn" treatment path.
At the moment this is just an idea - however if anyone would be interested in getting on board and share their experience, especially when opting for treatment paths (I am personally so over the Big Pharma scare campaigns constantly being forwarded to me by well meaning friends - Australia is NOT America), then maybe get in touch with me. It will be a couple of months before I start working on formulating ideas etc.
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Hi, I really applaud the idea of promoting self examination in schools. I am an ex high school teacher and haven't taught in 15 years. I remember taking a lesson for a colleague on health for students in senior years where cancer in general was discussed. Male and female students were educated on the need to be vigilant for changes in their bodies but there was no lesson for girls on how to do a breast examination.
I am 47 (am I considered young?) and was never taught how to self examine. Thank goodness I picked it up somewhere. But I never examined regularly just whenever I remembered. I found my lump after seeing a tv ad on breast cancer awareness month last October which prompted me to check. Being "young" I ended up being HER2+ which they say is more aggressive. I have never heard of free mammograms for women under 50 and my GP who is a breast cancer survivor herself never recommended I should have one. I have zero family history of any type of cancer and so I never thought I would need a mammogram. Are they offered in all states or just for women with a family history?
Other things I never knew before being diagnosed include: there are different types of breast cancer and it doesn't always present as a lump (my felt like a thickening in the skin), chemotherapy can put you into early menopause, and the importance of Vitamin D in preventing breast cancer. I believe information about vitamin D is very important for young women as levels are plummeting thanks to the take-up of social media (more women inside on computers and electronic devices for longer) and the strong message to stay out of the sun.
Good luck with your book. I think it's a great idea.
Take care, Nadine
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Dear Lunanoire
Thank you for sharing your concerns about advice for young women.
While breast cancer in very young women is rare, we know that just under 800 women under the age of 40 are likely to be diagnosed this year. We also know that younger women’s experiences with breast cancer are often different from those of older women for a variety of reasons.
Our priorities for younger women have included the provision of a decision aid to help women understand their choices around fertility before undergoing breast cancer treatment, an information booklet for women going through early menopause as a result of breast cancer treatment, awareness of the genetic risks for young women with a strong family history of breast cancer and advocating for government subsidised programs such as childcare.
It is correct that free screening mammograms are not available to women under the age of 40, however there is a Medicare rebate for breast MRI screening for young women (under 50) who are at high risk of developing breast cancer. There is more information about this on our website and we continue to advocate that the rebate for MRI's be extended to young women who have been diagnosed with breast cancer.
While we support awareness of breast cancer at all ages, our mission is to support those who have been diagnosed or affected by breast cancer. We will continue to support young women who are diagnosed through our information resources and advocacy work.
We are aware that the McGrath Foundation and Breast Cancer Care WA offer school programs which you may be interested in.
Hope this helps! Feel free to message me with any queries.
Eliisa
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In SA you can have free mammograms from 40 but it seems to be a bit of a secret.
Paula0 -
I have had free mammograms since age 40 through breastscreen Australua due to my family history. Because of my family history I saw a genetic specialist 20 years ago that advised me of this. Between 40 and 50 though you can't get auto recall...so I used to just do it round my birthday. However despite this.. at age 51 I developed breast cancer that was undetected by mammogram, I found it myself 5 weeks later. It wasn't until I saw the breast surgeon that I was told my breast tissue was very dense and hence not great for mammogram, even over 50. . Self exam is most def very important and it has been years since it was advertised on TV...as it was in my 20s...so probably yes...it is time to do it again. Goodluck...there are already great resources out there already so it might oay to hsve a look. Kath
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Ah, so... I've gone a little Dickens. Speed skim or outright ignoring is well understood, haha!
I've been trying to put together resources myself for this same reason (heck, my first post here was motivated by this same gripe). I'm slowly compiling a list for friends and family as I learn and experience. Things to do and know, and what to avoid doing or saying. I just couldn't find one of these "How to help your friend with cancer" articles that actually applied to me that I could pass on to friends as a guide and not have to go through the telling people ordeal on repeat.
I really hope it will end up useful to someone but I'm sure after I've been through it all that it will be just another page on the internet, so if you find anything pertinent in there once I'm done feel free to use it as one of your perspectives (I'll make sure I link it to you). Maybe you'll find the responses to that earlier post useful too. I'd love to participate in your project any way you find useful.
I want to say thank you for saying you want it out as a free resource too, despite the work you put in. I have a project underway I aim to have freely distributed to cancer patients too; early days but I have interested publishing parties and I'll hopefully have out around the end of the year as well. Why the thank you? My own gripe for the day was having a woman draw attention to herself because I tagged chemo in a post. She has completed compiling and publishing the volunteered feedback of around 50 women under the age of 45 on how to deal with chemotherapy. And sells the document - to chemo patients. *disappointed head-desk*
Mammography itself I think is still growing up as a technology, a decade or two more and it might be the go-to, but the detection benefit just isn't there yet for under 40. They can't see into dense young tissue. Even if the boob is a squishy pancake the scan comes out mostly a mess of white if you're under 40. Mine didn't show a large concentration of calcification they found during surgery. It that had been completely obscured by my own tissue in the scan. If that had been where the cancer originated and I'd been in for a check-up, no-one would have been able to see it. My actual tumor looked like standard polycystic change and wouldn't have sent up a red flag. It was because they could see heightened blood flow in an ultrasound and that I was sure it felt wrong that anyone bothered over it.
When I went in to get my lump checked the doctor gave me the same expression of disbelief that every following examiner would wear when they looked for it. They needed help physically finding it, but that isn't what was so remarkable to them. It was that I knew my body well enough to insist it wasn't "just glandular", and the fact that (and this still rings in my head) "It's really unusual for young people to check".
I had no idea it was unusual, and the idea of it filled me with - you know that breed of horribly wronged rage? I felt that on behalf of all the simply uneducated young people waiting on extreme symptoms to know. It still digs at me that I've been doing this for years, had this knowledge for so long but not shared it, just assuming it was a usual part of everyone's life.
I do want this taught in schools. Young people need to know their bodies. We could start up a petition to have it introduced to the PHE curriculum, scaffold around cancer awareness days to get conversations started?
Great rant Luna.
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Nadi - like you I was never taught how to self-examine and my cancer was HER2+positive. My GP's mother had breast cancer (not sure whether she is still alive) and whilst my GP recommended from day 1 that I should be focusing on healing and not work (thankfully I had savings), she failed to mentioned free mammograms once I hit 40 or anything about basis breast health.
Paulan - I am in Adelaide and yes, I agree, free mammograms from 40 yrs is certainly a secret ...
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Thanks Ellisa, I will check out the McGrath Foundation re school programs etc.
However my main issue is the lack of information from GPs in general regarding breast screening from 40 years. I've also noticed that the majority of the memes on social media also seem to include images of older women ... just my thing at the moment.0
