Metastatic Breast Cancer
Metastatic breast cancer (MBC) is when cancer spreads to other parts of the body outside of the breast, immediate surroundings and lymph nodes. It is sometimes referred to as advanced breast cancer or Stage 4 Breast cancer. Sometimes tiny breast cancer cells “escape” (most probably in the very beginning, well before surgery for early breast cancer was performed) and lodge themselves elsewhere. They lie dormant and for the majority of people nothing ever eventuates. In some cases however, despite adjuvant therapy and for reasons unknown to us, they begin to grow to a point where they cause problems and/or are able to be seen on a CT scan, bone scan or X-ray.
Cancers have favourite target sites in the body where they like to grow and these differ between tumour types. Generally breast cancer cells like to lodge in the bones, lymph nodes, lungs, liver and brain, roughly in that order of frequency. This is not always the case, but it’s pretty unlikely that the lump on your big toe is cancer!
Breast cancer is becoming a chronic disease
Once the cancer has spread elsewhere in the body, we are unable to get rid of it completely, at least, not with our current weapons, though this could well change in the near future. We can however with a series of different treatments try to keep it under control. Our aim if the cancer comes back is to keep you alive and well for as long as possible, and we will do everything in our powers to ensure this happens. These days, with the current treatments available, breast cancer is becoming like diabetes, a chronic disease that many people live with perfectly happily and productively for many years. We have patients who are still alive and well twenty years after their original diagnosiswith MBC! We are always hopeful that in the not too distant future there will be a cure for cancer, and as time goes on with further research this is looking more and more achievable.
If you have been diagnosed with MBC, in most cases we will talk to you about having a biopsy. This enables us to be certain that we are dealing with the same type of breast cancer that was initially removed from the breast. Biopsies are most commonly done as an outpatient, at your local radiology practice. It is done with a good shot of local anesthetic and is generally well tolerated, pain free and uncomplicated.
Research has shown that tumours sometimes change their stripes – for example a tumour that was originally hormone receptor positive can become hormone receptor negative down the track. We need to check the exact “flavour” of the tumour for a couple of reasons; to ascertain what treatments would be likely to work against it (eg. endocrine therapies don’t work against hormone receptor negative tumours) and also to check if it definitely is the breast cancer that has come back elsewhere. It is not uncommon for people to get two different types of cancer, for example breast cancer and a quite new lung or bowel cancer. Obviously if it is adifferent tumour altogether, we would need to discuss different treatment options – the breast cancer drugs and treatments wouldn’t necessarily work if the new cancer had arisen in the bowel.
When cells from a biopsy are examined under a microscope, if they have originated from a breast cancer, they will look like altered breast cells regardless of the part of the body they have come from. Put more simply: in a biopsy of your liver, a metastatic deposit from the breast will consist of a group of altered breast cells, not liver cells. This is how pathologists know what type of tumour it is.
You may hear people say that they had breast cancer and now they have bone cancer. In actual fact they most likely have breast cancer which has spread to the bones, not cancer originating in the bone, which is quite rare.
Sometimes biopsies are not possible because the tumour may be in a spot that is difficult or dangerous to access. That’s ok – we will just make an educated decision about your treatment options based on your presenting symptoms, medical history, the pattern of disease and details of your previous breast cancer. We will talk about performing a biopsy if the opportunity arises.
Patients living with MBC often will need to have some form of treatment for the rest of their lives. This may be in different forms; endocrine therapies, oral chemotherapies, targeted therapies or intravenous chemotherapies. We also use radiotherapy to control local symptoms at times. We often give people “treatment holidays” so don’t despair. Living your life as best as possible is what we want to achieve for you – we want you to go on holidays if you want to.
How long will I have treatment for?
Generally, we keep giving a treatment for as long as it is working and you are tolerating it. If any treatment is impairing your quality of life despite our trying our extensive bag of tricks, we will at least have a chat about other options, regardless of whether it is working or not. We want you to have the best possible quality of life. The objective of our management is for you to live a full, comfortable, active and thoroughly enjoyable life, free of the symptoms of cancer and with a minimum of side-effects from our treatment. We are pretty good at this!
How do you know whether the treatment is working?
Most often via regular scans. These are most commonly CT scans and/or whole body bone scans but sometimes MRIs or PET scans. We do scans periodically (usually minimum 3 monthly) and ask the radiologists to compare the current scan to the previous one – it is for this reason that we prefer that you undergo scans at the same place every time. We don’t necessarily need to see that the metastatic lesion/s have shrunk – we are just as happy if they stay the same. As long as there is no significant growth in new or existing spots, we are content that the treatment you’re having is working.
After we get to know you, we also can often tell how the cancer is responding to the treatment just by looking at you. It is rare that if you are feeling good and living life to full capacity that the treatment is not working. There is usually at least one thing that leads us to think the treatment is starting fail.
I hate having scans!
We don’t order scans just for the sake of it – sometimes it is the only way of telling if the treatment is working, and allows us to detect any problems early. You are not exposed to levels of radiation that are unsafe. It is completely normalto be anxious about having your progress scans, most of my patients are.
Should I quit work?
No! In actual fact we want you to keep working if you want to. Like I’ve said, people often live with MBC for years. If you are feeling well and tolerating treatment, then why not work if it is something you enjoy. You may want to work fewer hours if you are having intravenous chemotherapy, we are happy to support any decisions you make.
The nature of MBC
There may come a time when you get a scan result you weren’t hoping for, or after feeling well for a long time, will start to have more fatigue or have less energy or appetite. It may mean that the disease is starting to break through the current treatment.
The pattern with MBC tends to be this:
The cancer responds to a treatment and often goes to “sleep” for some time, often many months to years. Then, for no apparent reason, it wakes up (“relapse”). It starts to raise itshead and become resistant to the treatment you are having. Our approach then is to knock it down a second time with another different form of treatment. The disease will go to sleep again (“remission”) and often you will start to feel better. This pattern of remissions and relapses can go on for years, however as time goes on we find that the intervals between relapses becomes progressively shorter.
Should I go overseas to get that treatment I heard about on “60 Minutes”?
No. Whilst there possibly are alternative treatments overseas that may not be available in Australia, very often the scientific evidence for these treatments is non existent. These treatments are seldom cheap and in my opinion, usually a waste of money. If there is a treatment that has been proven to work, we will be able to access it some way or other here in Sydney.
Am I eligible for a clinical trial?
Quite possibly. At Macquarie University Hospital we have a well-established medical oncology clinical trials unit led by my close colleague, Professor Howard Gurney, with whom I’ve worked for 25 years. If there is a trial you may be eligible to participate in, we will discuss it with you. Sometimes there may be trials accessible through other hospitals such as Westmead or the Mater, North Sydney. If there is a clinical trial at one of those sites which you may be eligible for, we will also discuss it with you. For more information on clinical trials and those we are running at Macquarie University Hospital, click here.
I’ve been referred to the Palliative Care doctor. Does that mean I am dying?
Usually not! Yes it is true that patients are referred to the Palliative Care team for end of life care, but they are also referred for symptom management.
The palliative care doctors and nurses are the experts in managing symptoms of advanced cancer such as pain, fatigue, shortness of breath, constipation and nausea. Sometimes when you are first diagnosed with metastatic breast cancer you may have issues with a particular symptom such as pain, which is not responding to simple analgesia. If that is the case we will refer you to the Palliative Care team then.
A study recently performed in advanced lung cancer patients actually proved that patients who are linked with a palliative care team have much better outcomes – improved quality of life and they also live longer.
Another thing to note - patients often dip in and out of palliative care support. The main thing is that the link is made at some point and you are able to get their support if or when you need it. In the management of advanced cancer we always hope for the best but plan for the worst. At the very least it is another service you and your family can call on for help if you need it.
For more information see my page on Palliative and supportive care.
A final word
One of the biggest challenges in living with metastatic breast cancer is the uncertainty. Our approach is often a "play it by ear" one: while things are going well, we keep going and when they're not, we change tack. Things can change in an instant with the opening of a scan result and just when you were used to the routine of treatment, the plans change.
Questions like "how long will I be on this treatment for? And how long have I got to live?" are often very difficult for us to answer because we simply do not know. It is normal to experience some anxiety about this new way of "living" and our clinical psychologists Jemma and Rebecca are on hand if you need.
Please be comforted by the knowledge that Jenny and I have your best interests at heart. We will always be completely honest with you because we both firmly believe that it is not our right to know something about your health that you don't. If you want to get to your son’s wedding overseas next year, we will do everything in our power to get you there. When you are overjoyed with a scan result, so are we and when you're disappointed, we are too. If things don't go according to plan, we will be by your side to help you along the way. Nothing is set in stone. Plans, hopes and dreams change. It is your life and we are only here to guide you with decision making.
A fantastic resource
Order your FREE copy of the Breast Cancer Network Australia's Hopes and Hurdles kit here.