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

Chapter 2 …

On the 1st of June 2016 I was celebrating my last Herceptin treatment and the fact that, after 540 difficult days, I was finally finished my treatment.

I was so looking forward to having my trusty port-o-cath removed, only having to see the oncologist once every two months and finally starting to recover from the fatigue that has been with me since I started chemo way back in January 2016.

At my regular check-up with my oncologist on the 8th of June I mentioned that I was feeling a little short of breath and had developed an irritating cough. I put it down to allergies and she agreed but suggested that we do a  CT-scan. “just to be on the safe side”. My last scan on the 15th of February was crystal clear and as my tumour markers had also been stable for months, she said she wasn’t expecting to find anything untoward but just wanted to “be on the safe side”.

Clearly, we were both wrong as the CT showed some nodules in my chest and some very enlarged and unhappy lymph nodes in my sternum. The lymph nodes are the cause of my breathlessness and cough as they constricting the airways from lungs so they are not able to function at full capacity.

Stunned, pretty much sums up how I felt as the oncologist explained what would come next, a PET CT-scan, biopsies of the nodules and lymph nodes and then, a treatment plan.

I had the PET CT on the 3rd of July and the biopsies on the 5th and they both confirmed that the beast, not content with the havoc it had wreaked before, was back and, only 35 days after finishing my initial treatment, I was diagnosed with secondary breast cancer in my chest and lymph nodes.

To say that I am pissed off that I am right back where I started is an understatement but, I have beaten it once, and am determined to beat it again.

Chemo is due to start on Wednesday, the 20th, but more about that later …

Whenever you find yourself doubting how far you can go, just remember how far you have come, remember everything you have faced, remember all the battles you have won and all the fears you have overcome.