When we are first diagnosed we are faced with a barrage of decisions. There is an overwhelming desire to just get on with treatment, and a terrible fear about that exact same thing. We don’t want to be doing this, so since we are, we only want to do it once. But which treatment is the right one to choose?
The short answer is that I can’t answer that for you. Only you can ultimately make the choice – not your doctors, your spouse, your family nor that nosy neighbour (or workmate or school acquaintance!) who just has to have a say!
Sometimes our doctors will tell us we have to do a certain thing, be it chemo or have a double mastectomy. While I do advocate listening to your medical team, they know your personal situation best and have the training and experience to give the best advice, you also need to listen to your own intuition. After all, this is your life and you get to decide what to do with it.
If you really feel that what your doctors are recommending is not the best option for you, discussion is the best way forward. If your doctors don’t budge, get a second opinion. In fact, if it’s feasible, I recommend getting a second opinion anyway.
When I was diagnosed I fully trusted my surgeon and his recommendations. I saw the logic behind his suggestions and I knew which choice was right for me. I was choosing a DMX, and I was comfortable with that. But there was this tiny niggle in the back of my mind – “is this treatment overkill?”. After all, at this stage I was diagnosed with DCIS, and once my boobs were gone, there was no bringing them back.
So I got a second opinion. It mirrored what my surgeon had told me. This brought a kind of peace. I now knew this was exactly what I was going to do, and before I even got into the operating theatre, my doubts were gone.
Choosing Surgical Treatments
But let’s take a step back. What if things are not so clear for you? What if your surgeon has presented you with all the surgical options and has said “pick one”? How do you choose between a lumpectomy and radiation or a mastectomy? For most people, the recurrence rate for them is the same.
There are so many variables to think about, such as what other treatment you are going to have, how you cope with surgery and what sort of lifestyle you lead. These will all guide you towards one option or the other.
For me, the big question was this – what will be easier for me to live with? My boobs, but the worry of the cancer coming back, or no boobs, and better peace of mind?
Let me be clear, just because you (or I) choose a DMX, that does not 100% stop the cancer from returning. It can certainly decrease the risk, but it’s not gone entirely. A DMX is not a silver bullet.
A big part of my decision to go down the DMX road was that I had dense breasts and it was really hard to find my cancer on any of the scans. I didn’t want to live my life having a mammogram every year, being told it was clear, but then wondering if that was really true! (you can read more about dense breasts and see my mammogram here)
Other things I thought about that helped with my decision were my reconstruction options and my desire for symmetry, the likelihood that if my lymph nodes were clear like they appeared to be, then I would not need radiation, my high pain threshold, good healing abilities and the fact I bounce out of surgery like nothing has happened.
Genetic testing is another tool that can be used to help you decide between a lumpectomy and a mastectomy. If you have a strong family history, then there is a small chance there is a faulty gene contributing to your breast cancer.
Only around 10% of breast cancers are in those with genetic abnormalities, but if your test does show that, then a mastectomy may be the best option. Note that genetic testing can take some time, so if you want to use it as a decision making tool, ask to have it done as soon as possible.
To Chemo or Not to Chemo
After choosing which surgery to have, there are even more treatment options to decide on. For some breast cancer types (triple negative, HER2+) or stages, chemo is a given, but not always. Surprisingly, around 45% of breast cancer patients do not do chemo. (I could not find a recent reference for this, so it is an educated guess extrapolated from older data that suggests less people are now having chemo and compared with a poll in my Facebook group!) And sometimes your oncologist will give you the choice of doing chemo or not.
In the US at least, there is a test that seems to be done as standard to help decide if chemo is required. The common version is called the Oncotype-DX test, although there are some others out there as well. This test looks at your genetics, and determines if you will respond well to chemo or not. This test is only useful to those who are borderline for chemo treatment, and have a ER/PR+ HER2- diagnosis. If chemo is guaranteed because you are HER2+, triple negative or a later stage, it likely won’t be done.
In Australia, we can have this test, but it is not covered by Medicare or our private health insurance, so it has an out of pocket cost around the $5000 mark. If you really can’t decide on chemo and can afford it, this can be a useful test to have.
There is some correlation between the Oncotype score and the Ki67 score that will likely be part of your general pathology, but the Oncotype is a lot more accurate.
If you are still on the fence, it now comes down to what you can live with. Can you live with your decision if you choose not to have chemo but then have a recurrence? Can you live with the possible life long affects from having the chemo? Can you cope with that short term pain, sickness and hair loss to increase your chances of not going through this again?
I want to remind you again that whatever you choose, it’s your choice. And just because you start a particular treatment, it does not mean you have to continue with it if you just can’t.
What about Radiation?
Another common choice it radiation. It almost seems like a no-brainer to choose to do it if it’s recommended. Sure there will probably be some severe sunburn, but we can cope with that, right? Well, no, not entirely. Yes, the burns can heal, but there are some other things to think about too – particularly if your cancer is on the left.
Radiation to the left side can have consequences for the heart. It is possible for it to be damaged in the process of the treatment. While there are things put in place to prevent this, it’s not always possible, and definitely needs to be taken into consideration. Especially if you have other underlying conditions.
Radiation can only be done to an area of the body once. If you have radiation for early breast cancer, then have a recurrence, the treatment cannot be used again. So having it “just in case” is probably not the best idea.
Hormone Blocker Decisions
Chemo is pretty scary, but hormone blockers are almost as bad. If you have ER/PR+ breast cancer, it is likely that hormone blockers will be a recommended part of your treatment.
Of course you can choose not to take them, but my doctor said to me that he believes Tamoxifen has saved more lives in the last twenty years than any other breast cancer treatment, so in my eyes it was a necessity to at least try.
The type of hormone blocker suggested for you can vary. They work in different ways and there are different regimes depending on whether you are menopausal or not. Younger ladies may need to also have another medication to stop their ovaries working too.
The problem with hormone blockers are the side effects. It’s great that our cancer can no longer use estrogen to grow, but it also means that all the other parts of our bodies that use estrogen can’t either. It’s kind of like going through menopause, but because there is no estrogen, it can be more severe.
Some of the common side effects are hot flashes, bone pain, fatigue, nausea, thinning hair, loss of libido – and the list goes on. For some people, the side effects are minimal, for others they are completely debilitating. Unfortunately there is no way to know what your side effects will be like, unless you give them a go.
So I always say to at least try the hormone blocker treatment if it is recommended. Go with whichever your oncologist suggests. If your side effects are bad, try another. Always know that you can stop them at any time. Sometimes, quality of life needs to take precedence, at you will know that at least you tried.
Ultimately, with all the different options, you can weigh up the pros and cons and still be confused. If that’s the case, I say go with your intuition. Sit still and think about each of the options. How do they make you feel? Is there one you gravitate to more? What was your immediate gut feeling right at the start before you knew all the options and side effects? Perhaps journal about how you are feeling. Talk to trusted friends and family, but be careful not to let their feelings cloud your own.
And in the end, once you make a decision, choose to be at peace with that! The grass is not always greener, and every option has its downsides. You also cannot know how things will go or how you will feel, so be kind to yourself. Understand that you are making the best decision you can at the time and live life rather than lament what could have been.
Good luck with your decision and treatment. ❤️
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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