Understanding Breast Cancer Diagnosis and How to Find Trustworthy Information

Transcript

You know, when you have a new diagnosis of cancer, any cancer and especially breast cancer, it’s a whole new world. You know, you’re going along in your life and suddenly you get hit with this. So, first of all , there’s the classification, there’s the tests, there’s the treatment… it’s impossible to try and understand everything. That’s why I say it’s a process. The harder you try to understand everything, the more frustrating and the more difficult it is. The only real advice I have is when you come to appointments, to bring someone else always, because it’s been well shown in many doctors’ meetings with patients, especially in the beginning, that patients only process less than half of what you say. So, studies have shown this. So, if you come with a second set of ears, you’re more likely to walk away with a better understanding.

The other thing is that we will repeat again and again what we say at different meetings and through different personnel. So, we’ll say it, the pharmacist will say it, the nurse will say it. So, although you want to understand everything at the beginning, it’s really hard to.

I would say don’t spend too much time on a website, don’t do too much reading, because every woman is an individual patient, and statistics are great for me, but the individual is not a statistic. So, you know, if you’re going to look at a statistic and say 90% of women are alive and disease free in ten years, and say “Oh, but what about the other 10%?” Don’t spend too much time on statistics.

So, my advice is to ask your professional for sources that are accurate. I believe we’re providing on this site what we feel are accurate sources of information. I think it’s very important. Patients come to me all the time with things that they’ve read on the internet that are not accurate. So, you have to be careful what you read. Anybody can put anything on the internet and it’s not necessarily valid information. One of my favourite sites is the NCCN site, it’s the National Comprehensive Cancer Network site. It has a patient site, it actually has cancer sites for every cancer. When you go on that site, you go to the patient network, you click on breast cancer, it’s got lots of information. It’s very well presented, it’s free, and it’s very accurate.

I think that doctors can only present you the medical aspect and help you get through the treatments, but we can never be a patient in terms of dealing with day-to-day breast cancer, and I think that we can really be helped by listening to women’s experiences and how they deal with the day-to-day aspect of it. I think you can really learn a lot by listening to other women, that’s why we’ve, for years and years, we’ve had support groups, but not everybody has easy access to support groups. Not everybody wants to be out there in the support group. That’s why I think an online support group or an online – to be able to go online and listen to women, it’s sometimes a lot easier for women than to actually attend a support group. So, you can have either one.

But, you have to be careful because some women don’t actually provide support when they think they’re providing support, when all they’re telling you is the negative aspect, they’re providing support for themselves more than for the person seeking support.

It’s just really hard to process everything at the beginning. Eventually you’ll get it, but it’s hard at the beginning. I think by the time – as a medical oncologist who does chemotherapy or prescribes hormonal therapy – I think by the time you get to your first chemotherapy session, you’re understanding it, but it sometimes takes several weeks until you’re at that point. So, it’s very hard. Many people walk away very overwhelmed at the very first session.

The relationship that a woman has with her oncologist is different from most doctor-patient relationships. It’s close, it’s intense, and you really have to trust your oncologist. You’re getting a lot of medication. Some patients feel it’s a life or death situation. You have to develop a trusting relationship with your oncologist, and you have to feel it almost from the beginning. If you don’t, then you’re in a bit of a situation. So, there are two situations where you might want to seek a second opinion: one is at the beginning, before you start treatment, and one is during your treatment, if you’re not quite so happy. So, sometimes it’s uncomfortable to ask your own oncologist, and sometimes – I think it’s better if you find your own second opinion. It’s not always easy to navigate through the medical world, find your own opinion, but there are other ways that you could find a second opinion.

You can go online, because you can get practically anybody’s name in any institution online. You can ask the nurses or other health professionals in your own institution if you’re not happy. You can ask in your support groups for other opinions.

You have to decide if it’s really just a second opinion, if you’re just looking to make sure that the treatment you’re being offered is the right treatment, or if you really want to change doctors. You have to remember that when you’re asking for a second opinion, especially before starting treatment, you’re going to have a delay in treatment because it takes time. I think that if people, patients aren’t happy with their primary oncologist, then it’s worthwhile to change.

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