This week we had a decision to make: whether or not to proceed to the last stage of breast cancer treatment: Endocrine Therapy or hormone blockers as they are commonly called. Today, Chris shares her thoughts on this.

A bit about Endocrine Therapy

Hormone blockers are often prescribed after breast surgery, radiation or chemotherapy as a way to further reduce the risk of cancer recurrence in people with early-stage hormone sensitive breast cancers.

Some breast cancers use hormones in the body to help them grow. Hormone receptor-positive breast cancer cells have either estrogen (ER) or progesterone (PR) receptors or both. My cancers were both ER and PR positive. So I was advised at the very beginning that my treatment plan would likely include endocrine therapy for a period of 5 years. This got my hackles up, but at the time I thought I would deal with this later.

Now four months down the track, we had the final appointment this week with the radio oncologist who could refer us to a medical oncologist for the prescription of hormone therapy. Don’t you like the word “therapy”? I like it nearly as much as “side effects”!

The game of risk management

Each person’s risk of breast cancer recurrence is different and depends on many factors.

• Women with hormone receptor-positive cancers tend to have a better outlook in the short-term, but these cancers can sometimes come back many years later. Treatment with endocrine therapy blocks the growth of the cancer cells in either breast.
• The degree to which taking hormonal therapy is important for lowering your risk varies depending on your individual circumstances: the size of the tumour, its grade and stage, whether the lymph nodes were affected, your age, your family history. Both my surgeon and the radiation oncologist modelled my personal situation. In my case the modelling showed that taking hormone blockers would result in an increase in a cancer-free survival rate of 2%.
• How risk or gain is perceived is individual too. For some people, a 2% change is consequential and worth putting yourself through some discomfort. For others, it is not. I am in the latter group.

Side Effects

When trying to mitigate risk, there is always a trade off, so let’s be upfront about the trade off with endocrine therapy: their side effects.

For postmenopausal women Aromatase Inhibitors are the hormone blockers which are primarily used. Common side effects include a return of intensified symptoms of menopause such as hot flashes, fatigue, night sweats, weight gain, disturbed sleep and depression. These drugs also commonly cause bone, joint and muscle pain, particularly if you already suffer from arthritis and they increase your risk of osteoporosis.

70% of women get noticeable side effects. How do you know to what degree you will be affected?  You don’t. The medicos don’t know for sure either. You start the treatment and see!

Once you start hormone blockers you often end up on a merry go round, being moved from one drug to another, trying different medications to reduce the debilitating side effects. It becomes a minefield.

I did my homework and learned more about the potential side effects of drugs like Tamoxifen, Arimidex, and Letrosol, the likelihood of them affecting me given my other medical challenges of Type I Diabetes and Osteoarthritis. I read a multitude of personal accounts and talked to women going through hormone treatment. It was not encouraging!

Why would anyone want to take one medication to prevent the recurrence of cancer and then have to add more and more medication to keep side effects under control? Why start on a path of trying different types of hormone inhibitors to see if you can find something that will keep the side effects tolerable? It doesn’t make sense to me, especially when the gain is so low. What makes more sense is to find a way to stay fit and well and enjoy life. One thing I do know is that at 66 years of age I do not want to spend the next five years feeling unwell. For me the decision to have a better quality of life is paramount, particularly when we want to continue living our current nomadic life on Anui for quite a while longer.

So what else can you do to minimise the risk of recurrence?

Making wise lifestyle choices will help. Regular exercise, a healthy diet (low saturated fat, lots of vegetables and fruit, eating a Mediterranean type diet, avoiding fried food), low alcohol intake, maintaining a healthy weight all increase your chances of keeping a recurrence at bay. It makes you feel better, less anxious, less fearful. It also makes dealing with your other aches and pains more manageable.

A healthy lifestyle coupled with being vigilant with medical follow-ups will make a difference and is within my control.

The decision

The health care responsibility does not just lay on the shoulders of your multidisciplinary medical team. It is your body, your life and you have a right to make a choice, knowing the options and understanding the consequences. You have the ultimate decision for your treatment.

Trying hormone blockers for a few months to see how it goes is what Wade would prefer I do. If the side effects are innocuous, take the drugs, if they are not tolerable, stop. My preference right now is to focus on getting well, to go back to enjoying life, and to not embark on another unpleasant period of treatment.

The fact that my cancer was small, removed with clear margins, had not spread to the lymph nodes, and I had radiation treatment to wipe out any microscopic cancer cells left, tilt the balance away from hormone therapy for me as does the very small gain in risk mitigation.

Delaying making a decision until we get back to the Gold Coast for follow ups in October was an option suggested by a dear friend. But to be honest I can’t imagine I will feel any more inclined to start the hormone blockers in six months than I am now. So my decision is to take my chances with a recurrence and get on with life.

Smelling freedom

We are ten days from leaving the marina after four months out of action. The countdown has started! We can just about smell that freedom and are preparing for our departure: removal of the tarps, major boat clean up inside and out, resealing a leaky hatch, provisioning, final gym tuition for the continuation of our fitness regime on board, goodbyes to old and new friends, including Heriot the Heron who is not even afraid of Bengie anymore!

Our last “Health Matters” post will be next week, when we reflect on what we have learnt through this tough journey. After that it’s back to sailing adventures. Stay tuned and in touch!