Metastatic Breast Cancer Awareness Day

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Today, October 13th is Metastatic Breast Cancer Awareness Day.

Following my diagnosis with Metastatic Breast Cancer (MBC) in July, I’ve spent quite a bit of time online looking for more for information about MBC and, also, for support groups for those living with MBC.

To my surprise, I found that there was a common thread running through most websites and forums I came across. None of them seem to like October (Breast Cancer Awareness Month) very much. Some forums and groups have even gone so far as to ban any posts about “Pinktober” on their sites. This is particularly true of sites which originate in the US.

There seems to be a lot of frustration within the MBC community around the fact that,  during October, the sole focus of most campaigns seems to be on breast cancer survivors, awareness regarding the early stages of breast cancer and the low death rate from breast cancer. There is very little or no focus on  women living with MBC, the fact that there has been very little decrease in the death rate for 20 years and, also, the fact that only a  tiny portion of the funds raised during October find their way to researchers who are trying to find a cure for MBC.

If I am completely honest, and as much as I hate to admit it, I have found “Pinktober” quite difficult this year. My feeling is that unless you are a breast cancer survivor, you don’t have a voice. For example, I responded to a number of requests for articles/photo shoots and makeovers but as soon as I mentioned the fact that I was not a survivor but had MBC, my offers to contribute were declined. Quite sad really.

So, as today is Metastatic Breast Cancer Awareness Day, I’ve taken the opportunity to upload some interesting facts about MBC:

  • Metastatic Breast Cancer, also known as Stage IV breast cancer,  is cancer that has spread outside of the breast to other organs in the body. This is called metastasis. Breast cancer that spreads to another organ, such as bones, lung, or liver, is still breast cancer. It does not become bone cancer or liver cancer or lung cancer. The tumour cells still look and act like breast cancer and are treated as breast cancer.
  • There is no cure for MBC. The main difference between early stage breast cancer and MBC is that MBC is treatable but no longer curable. Treatment is lifelong and focuses on preventing the further spread of the disease and managing the symptoms, the goal is for patients to live a good quality of life for as long as possible.
  • Breast cancer confined to the breast doesn’t kill. MBC does as it has spread beyond the breast to other organs. Approximately 40,000 women and men die from MBC in the US each year. This number has remained essentially unchanged over the last 20 years.
  • MBC is monitored by periodic imaging tests (CT, PET or bone scans or MRIs) blood test measuring tumour markers and assessments of how the patient is feeling. Scans are normally done every three months but, if the metastases remain stable or shrink, scans may be done less frequently (e.g. every six months).
  • MBC is often an invisible illness. You can’t tell how sick we are just by looking at us. Some of us are bald, but most are not. Some of us show obvious signs of treatment, but many of us have hidden scars and severe side effects you cannot see. We may go to great lengths to hide or minimize how bad we feel or how serious our illness is.
  • Anyone can get MBC and no one brings MBC on themselves. Anyone who has had an earlier stage of breast cancer can experience a metastatic recurrent and some women are diagnosed with MBC on their initial diagnosis.
  • Everyone should care about MBC. Early detection doesn’t always guarantee a lifetime cure. Even with aggressive treatment, 30% of early stage breast cancers eventually metastasize.

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For those of you wondering about the MBC ribbon, here is a brief description of what each colour signifies. The ribbon was designed to highlight the uniqueness of the disease and show its commonality with other stage 4 cancers. The base ribbon of green and teal  represent metastasis. Green represents the triumph of spring over winter, life over death, and symbolizes renewal, hope, and immortality while teal symbolizes healing and spirituality. The thin pink ribbon overlay signifies that the metastatic cancer originated in the breast.

Hope you all found these facts useful and that they gave you a little more insight into what Metastatic Breast Cancer is all about.

Much love xxx

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Back on the rollercoaster …

SO, after not having made a post for a while, I’m afraid that this is going to be another one of “those” posts …

Last week, after completing two cycles of chemotherapy, I had a PET CT scan to check how the cancer was reacting to the treatment. Unfortunately, the results were not what we were hoping for!!

It seems that the beast is proving to be even more difficult to tame than we thought and has now set up home in several new locations in my body. These include metastases on my thyroid, a rib, my right hip and the top of my right femur.

Luckily, the bone lesions are fairly small but my rib has already fractured which is a sign that my bones are quite weak. I’ve been in hospital since Monday as a precaution while the doctors decide what to do to protect my hip and femur. The orthopod has decided that no surgical intervention to strengthen the bone is needed yet which is a relief and, for now, they will treat the lesions with five fractions of radiotherapy. This will start on Sunday and I will have one fraction a day for five days.

I am also going to be given an injection of a drug called Xgeva every six weeks which will help strengthen my bones. This will continue indefinitely.

Most importantly, is a change in the chemo regime. Today, we are starting a new regime made up of two drugs. The first, Cisplatin, is a platinum based chemotherapy (of the same family as mustard gas!!!) and is given once a week for two weeks. The second, also a chemotherapy, is a drug called 5FU (5 Fluorouracil) which is administered continuously for 14 days. 5FU is also known as a “suicide inhibitor” as it literally causes the cancer cells to commit suicide, I kind of like that idea!! What I am not too sure about is the thought of having to carry my “suicide inhibitor” around with me for 14 days … never thought I be making best friends with my chemotherapy!!

Each 14 day cycle is followed by a week’s break and I will have between 6 and 8 cycles with another PET CT after the third cycle to check the response.

I have been warned by Dr S. that these drugs are more toxic than the last chemotherapy and that I should expect the side effects to be worse than those I have experienced before. I am hooked up at the moment and my lovely chemo nurse is just about to start the Cisplatin so I will keep you all updated … right down to the last gruesome detail!!

What I will say is that if I don’t develop some kind of X-Men-like super powers after all these drugs and radiotherapy I will be seriously disappointed.