Oh boy, when we are diagnosed everything we have ever heard or seen about breast cancer comes straight to mind – and of course it’s all the bad stuff we remember first. Then we start hearing from everyone we come in contact about that miracle cure or “scientific” research. So many of those things we’ve believed or have been told are outdated ideas, old wives tales, or even myths. Here I go through some of the most common and give you an alternative way to think about them.
Myth #1 – You are going to die!
Lets start with the elephant in the room – you are going to die! Often this is one of the first thoughts that crosses our mind when we are told we have cancer.
Well, yes, you are going to die – but probably not from breast cancer.
I’m a numbers person, and I really wanted to find a nice statistic that told me exactly what percentage of people die from breast cancer once diagnosed, but it was really hard to track that number down. The best I could come up with was this article that says that the 30 year survival rate for breast cancer in the US is 80%.
With treatments changing and improving all the time, this percentage is only increasing, even though the number of people diagnosed with breast cancer is also increasing. And remember, to work out a 30 year survival rate, it has to be based on people who were treated thirty years ago. Medicine has come a long way since then.
So that means, for those people diagnosed now, more than 80% of us will probably still be here annoying our family members in 30 years. Those are pretty good survival odds in my eyes.
Of course the odds do vary depending on your type of cancer, stage, age at diagnosis and a whole pile of other things. If, when you are diagnosed, the cancer has not spread outside of the breast (that is 63% of us!), the five year survival rate is 99%. For DCIS/LCIS, the five year survival rate is 100%
Hopefully these numbers will provide some comfort that you are more than likely not going to die from breast cancer.
Myth # 2 – Chemo is certainly in your future
Not necessarily! I wanted to go and find some nice numbers on this too, but that proved impossible.
What I did find is that as of 2018, there are many more women for whom chemo is not recommended. Using the Oncotype DX test, it’s now possible to make a more educated decision on when chemotherapy is required and when it is not.
There are some types/stages of breast cancer where chemo is almost guaranteed – if your cancer is triple negative or HER2+ or it has been found in the lymph nodes or other parts of the body.
If you have the “garden variety” of breast cancer though, that is, ER+/PR+/HER2-, then it all comes down to your risk factors, including that Oncotype DX score.
While I couldn’t find any exact percentages, I did run a poll in my Facebook group. This certainly won’t pass any scientific scrutiny, but it did give a rough idea. Of the people who responded, 55% had chemo, 45% had not.
Myth #3 – Breast Cancer is hereditary
This was one myth I certainly believed! We all hear it, we are only at risk of breast cancer if we have family members who have been diagnosed before us.
Well, from my own personal experience I can say this is not true. I have one Aunt that was diagnosed with early breast cancer, had it removed, and has lived for 20+ years since. My mum (now in her 70s) and both grandmothers are/were clear.
In fact, only around 15% of all people diagnosed with breast cancer have a close family member that had it previously. And of those, only 5-10% are due to a genetic mutation, such as the BRCA gene mutation. There are 72 gene mutations that have been linked to breast cancer, but the most common are BRCA1/BRCA2.
So this means we need to stop being complacent if we do not have a close relative who has had breast cancer. Share the word with your friends and family, so they don’t think “my Mum didn’t have it so I won’t either!”
Myth #4 – You will lose your hair
This myth runs a little hand-in-hand with the one about chemo. It’s chemo which causes the hair loss that is most commonly linked with breast cancer patients, so of course if you don’t have chemo, then you will not loose your hair.
But that’s not the only reason you may not loose your hair. Chemo is not a one-size-fits-all treatment. It’s true that the most common chemo given to women with breast cancer will cause your hair to fall out, but not every type of chemo will. It’s always a good idea to ask your oncologist to be sure.
If you are having chemo, and it’s one of the concoctions that causes hair loss, there is still an option. You can try cold capping. This involves wearing a freezing cold “hat”, kept at around 4°C for an hour before, during, then an hour after the chemo treatments. By almost freezing your head, the blood vessels constrict and the chemo drugs won’t flow into them, so they don’t kill off the hair.
Results from cold capping are varied. Some people say they loose almost no hair, others loose so much they give up, and some people cannot cope with the cold so discontinue (I think I would be in this category).
Myth #5 – You did something wrong
This myth is a personal bugbear. I often hear women say “I got breast cancer because I took the contraceptive pill” or “I blame my cancer on IVF”. Then there are even more women who beat themselves up over a bad diet, being stressed or for not breastfeeding their kids.
We need to stop looking for something to “blame” for our cancer and give ourselves a break! We will never known what causes it. How many times do we see other people doing exactly the same (or worse) than us yet they do not get cancer?
Stop thinking you did something wrong. Accept that it is what it is, then focus on what you can change – your treatment, your mindset and living your best life.
Myth #6 – You are going to be scarred and deformed
Almost everyone who has breast cancer has some kind of surgery. Whether it’s a minimally invasive lumpectomy or a full bilateral mastectomy, there are going to be some changes to the appearance of your breasts.
My initial lumpectomy was done as a wide local incision around the edge of the areola. If that had come back with clear margins, I would have got on with life and in a few months would not even notice the scar or the slight indentation from where the tissue was removed.
As it happens, that was not the case so I had a bilateral mastectomy. Yes, I have scarring, but I do not in any way feel deformed. (You can judge for yourself here). In fact, I quite like my new boobs!
There are some people that have incredible reconstructions. Some mastectomies are able to be done as both skin sparing and nipple sparing with the incisions in the crease underneath the breast. To look at them you would not know that anything had been done.
More importantly though, no matter what your surgical outcome, accepting your new boobs – or lack of them if you choose to stay flat – is more about mindset than how they actually look.
Myth #7 – There will always be a lump
Breast cancer is one of those “it’s different for everyone” things. When diagnosed, not everyone has, or can feel, a lump. This myth can be dangerous for those with other symptoms instead.
In fact, there are types of breast cancer that don’t form a lump, such as Inflammatory Breast Cancer which affects the skin, and Pagets Disease which is cancer in the nipple.
Myth #8 – A mammogram will always find your cancer
This is another one I believed before I was diagnosed, but I quickly learned that this is not the case. My breast cancer did not show up on the mammogram at all.
This generally is an issue in younger women, which is why mammograms are not recommended for women under forty. I am not that young though, and my issue wasn’t age, but instead breast density.
Some women have naturally dense breasts. This means that the breast tissue and cancer look the same on mammogram, and therefore it’s hard to work out which is which.
So use the mammogram as a tool, but remember, if you still feel there is something but it’s not showing up, then speak with your doctors some more. There are other scans they can do.
Myth #9 – A bilateral mastectomy means you can’t get breast cancer again
This is a big myth. A bilateral mastectomy is a bold move. It’s removing a part of your body, it’s major surgery, and it can be a huge blow to our self-esteem and body image. But it’s not a guarantee that our breast cancer will not come back.
During surgery, most of the breast tissue will be removed, but there is always a small percentage that is missed. It might just be a few cells that is left, but sometimes that is all that it takes.
It’s scary to think about it, but the cancer can come back in the scar tissue or the incision, it can come back in the skin or the chest wall, or, in the worst case, it can appear again in another part of the body if some cancer cells got loose before they were removed.
Having said that, the mastectomy could significantly reduce the chances of the cancer coming back. It can also help with mental health, and sometimes, it’s necessary due to the size of the tumour.
So if your reason for choosing a mastectomy is to absolutely stop the cancer coming back, please do some more research because that is not guaranteed.
Myth #10 – Breast cancer only affects older women
This myth is half true. Breast cancer is definitely more prevalent as we get older, but do not believe that you are immune just because you are younger.
I have come across countless women online in their twenties who have been diagnosed. I have even “met” a girl who had a bilateral mastectomy at 19. A quick Google search tell me that the youngest person diagnosed with breast cancer was only 8 years old! Insane.
Unfortunately younger women are also likely to be diagnosed at a later stage. Maybe because they don’t look for the signs, think it couldn’t happen to them or get fobbed off by doctors. The cancer is also more likely to be aggressive if diagnosed younger.
Breast cancer can also affect men too. There are a small number diagnosed each year, so if a male family member mentions a symptom, make sure they get checked.
The reality is, a breast cancer diagnosis is possible no matter who you are. Sure, there are some risk factors – being an older female is one – that make it more likely, but everyone has to be aware and persistent if a doctor does not take you seriously. We are our own best advocate when it comes to breast cancer, and finding it early makes a huge difference.
So there you have it, some of the most common myths associated with breast cancer. There is so much we don’t know if we are not exposed to cancer and all we see is the sensationalist media articles.
Have you joined a breast cancer support group on Facebook but been completely overwhelmed by some of the posts? It’s fantastic that these groups are an open forum and all sorts of questions, worries and issues are addressed, but sometimes they can be too much. In fact sometimes they can be downright scary.
If you would still like to join a support group on Facebook but not be faced with some of the scarier aspects when you don’t want to see them, come and join Positive Breast Cancer Stories. Here we share positive stories, celebrate milestones and encourage each other rather than deal with the technical information >>
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