October, the month of breast cancer awareness, and seeing a lot of pink and fund raising. Less known is the 13th of October which is Metastatic or Secondary breast cancer day represented with the colours teal, green and pink. Less known not just on the day but also what Metastatic is and therefore what we should look out for!
Metastatic also known as Secondary breast cancer, advanced or stage IV breast cancer, is a cancer that has spread beyond the breast to other parts of the body. Parts of the body affected are usually the bones, liver, lungs, brain, or the skin. When it spreads it is still breast cancer even though it is in other parts of the body.
Secondary breast cancer can be treated but it cannot be cured. Treatments aim to control and slow down the disease to enable patients to have the best possible quality of life for as long as possible.
Before my own diagnosis of Metastatic breast cancer in my lung in 2019 I had no idea of what the meaning was and just had the normal thoughts “what if my breast cancer should return”.
Even though I had a mastectomy and treatment a small part of my breast cancer broke off and lay dormant for 8 years before finding a new home in my lung. It is still breast cancer but, in my lung, and lymph nodes. It is so very different this time round than it was the first time. This time it is not curable, and treatment is forever. It is physically different but also mentally very different.
You do not stay on the same treatment throughout. Cancer is sneaky and mutates and gets used to the treatment which then stops working. The time that this takes varies and I was very lucky to have 3 years on one treatment. Since then, my treatments seem to last 5 or 6 months and then the cancer progresses, and we try a new treatment. Progress at this time with treatments is good and they are finding new ones all the time and hopefully one day soon they will find a cure instead of just slowing the cancer down. As with any other illness, if you feel things are not right get checked out as soon as possible as the earlier it is found the easier it is for them to find a treatment for you. MBC does not only occur with people that have had cancer before it can also be your first diagnosis of cancer.
My symptoms were a prolonged cough but there was flu about so did not think so much about it but decided after a couple of weeks and antibiotics to get it looked at. (Pre the days of covid) With X-rays it showed fluid on my lung caused by the cancer.
The most common signs that breast cancer has spread are:
- Bone pain or bone fractures due to tumour cells spreading to the bones or spinal cord.
- Headaches or dizziness when cancer has spread to the brain.
- Shortness of breath or chest pain, coughing caused by lung cancer.
- Jaundice or stomach swelling.
Many people with Metastasised cancer would say that the side effects of treatment had an even greater impact on their quality of life than they had expected. Some people choose not to continue with treatments because the side effects can be so harsh. It is life-changing and as we are not ever finishing with treatment it is very tiring and causes anxiety. Most of us would like it if people were more informed and there was more professional support to help not only us, but our families and friends deal with the repercussions of such a life-changing diagnosis.
Here are some Myths about MBC
Myth 1 MBC is curable.
It cannot be cured but treatments can keep it under control. I am often asked “when will you finish treatments” or “wont it be good when you are finished this”. It only ends when it stops working and they run out of options.
Myth 2 MBC means immediate death.
I have stage 4 incurable cancer not terminal cancer. It will shorten my life drastically but is manageable for years at a time.
Myth 3 MBC makes you look sick.
” You look so well” or “you don’t look sick” are often said to me. I am lucky to live in Mallorca in the sunshine and have olive coloured skin so I do not look the image of what a cancer patient should look like with grey skin.
On a bad day you will not be seeing me out as it will mean that I will have fatigue, joint pains or diarrhoea and sickness and not be able to move.
Myth 4 MBC means that you did something wrong the first time.
Unfortunately, there is no explanation of why it happens to some and not to others. I have found that I have had to defend myself and my oncologist for my original treatments and what I did and the way I have lived. If only I had run 500 times the other way round the lemon tree singing a different song, then this would never have happened! People try to help with lots of information on how somebody they knew cured and saved themselves by doing certain things. Everyone’s cancer is different and how we react to it also. I wish that our treatments could be as individual especially the dosages given so that the side effects could be minimised more, but this is a costly exercise. The medical treatment in Mallorca is amazing and I believe in my fully trained team of oncologists and know if there was a cure, they would be the first to offer it to me. It is mentally very hard to deal with MBC anyway without the extra feeling of unjustified guilt of not looking after myself being added to it
Myth 5 MBC mentally and emotionally is the same as early-stage cancer.
Mentally and emotionally, people with MBC have a completely different experience. There is no end to treatment, and you must plan your lives around hospital visits and treatments. Cancer is always in the back of your mind as it is part of living. The first time I had cancer was so very different to this. It is also harder for family and friends as they feel so helpless in what to do for you to make your journey easier.
Sadly, MBC receives very little funding for research (approximately 5%) and yet is the biggest cancer killer. With more awareness hopefully this will change.
The hardest part for me about MBC has been how everything has changed forever not only from the cancer but from the endless side effects from the treatments that keep me alive. It is like waking up one day 30 years older than when you went to bed. I grieve the loss of the old me. Yes, I can manage to do things on my good days, and I am grateful for all those times, but I used to be able to do so much more. The knowledge that I will never have that old self back makes me feel selfish as I am lucky that I have this life and ability still. I look well but hate that inside I am out of control of my body and how it reacts to all that it must deal with now. The statement “we are all dying” or “I could be run over by a bus” that people think will help me really doesn’t. I have a bus that is close and heading my way that I cannot move out of the way of. Friends that acknowledge that I fear my future, my ability to live and length of life left help much more.
I am not fighting or brave I am just trying to come to terms with this new life and make the most of every single part of it that I can while I can. It is not the dying that upsets me the most it is losing control of how I live that is hard.
I am so lucky to have family and friends that help me to adjust to this new me and try to adjust with me when things change. I want to live life as fully as each day allows. I do not want cancer to define me I want to find a way to live with it as happily as possible and wish this for everyone else that is on this journey.