Happy Metastatic Breast Cancer Awareness Day

Or something. In this month of ‘Pinktober’ of breast cancer awareness, the US created an official day just for Mets patients, Oct. 13th. The best day will definitely be when it falls on a Friday >.<mbc-is-for-life
It has been a busy week with Thanksgiving on Monday, International Day of the Girl on Tuesday, Coming Out Day on Wednesday, and now Mets Day. Most people that will read this post already know me and what a Metastatic diagnosis means, but this is an awareness day so too bad for you, it is refresher time……

One in 9 women will experience some form of breast cancer. At the the time of diagnosis between 6 and 10% will be stage IV which means the cancer has already spread beyond the breast or neighbouring lymph nodes and has metastasised to the bones, lungs, liver, or brain. In my case the cancer was in my liver and in several spots on my bones.

A short mention of the difference between stage IV and Metastatic cancer……the stage of a cancer at initial diagnosis is the official stage of a cancer. No matter what happens in the future this does not change. A patient may initially be diagnosed as stage II and 12 years later the cancer may be found in the bones. This patient is a stage II patient with bone metastases or Metastatic Breast Cancer, she does not become a stage IV patient. A stage IV patient has Metastatic Breast Cancer from the get go. These terms are used interchangeably by most people but I find the difference quite significant as the mentality that drives each patient is quite different.
The difference is not so much caused by the patients themselves but by the way society views the patients. Society likes good news stories about fighters with happy endings. I know I much prefer happy endings, but as of right now with the state of cancer research an MBC patient never has a happy ending. As a result, society prefers to focus on the early stage patients that can be cured and be labelled a survivor. Us Metsters aren’t survivors, we are surviving. Some within the Mets community use the terms Metavivor, others use Lifer. A few other terms get tossed around but those two seem to be the most common. Personally, I am more of a Cancer Coper. I cope with cancer, run around to appointments, get annoyed by the fatigue, and then get on with my life. The cancer may always be there but that is not all I am and I try my best to not have it run my life, although it kind of does. It is difficult for anything that required 50 appointments from January to the beginning of July to not control your life 😛

And done with running off on a tangent.

Of the 90 to 94% of breast cancer patients diagnosed at an earlier stage it is estimated that about 30% will eventually be diagnosed with metastatic breast cancer. The stage of the original cancer does not seem to be an indicator of the possibility of later being diagnosed with MBC.
It is estimated that about 150,000 women and men currently have MBC in the United States. Men can get breast cancer and it can also metastisise. Extrapolating that number down, there are approximately 15,000 MBC patients in Canada.
Only about 3 to 5% of research dollars are spent on all metastatic cancers yet for breast cancer only the metastatic form of the disease kills. Canada and Europe are around 5%, the US around 3%. MBC patients do benefit from a portion of the dollars spent on other aspects of breast cancer such as new drug treatments but perhaps better understanding how cancer metastisises would be helpful in stopping metastases from happening at all.
Having metastatic breast cancer also means that treatment never ends. I take a pill every day, get my Herceptin and Pertuzumab infusions every 3 weeks, my zoladex injection every 4 weeks, and my Pamidronate infusion every 4 weeks. And that happens every month of every year for as long as they all work and keep the cancer in check. As one drug fails it will be stopped and a new one will be added but there is no end to the drugs until I run out of drugs. Hopefully the researchers will keep finding new drugs.

Okey doke, I think that is enough education for one day, now a quick run down on how I am doing. I had conflicting scans in April, CT and MRI scans were lovely and showed stability in some spots and improvement in others while the PET scan was terrible and showed all kinds of progression. Repeat scans were done at the end of July then Ian and I popped over to Toronto and visit my cute little nephew.
We had a side trip down to a lovely place, Skaneateles, New York, to visit Ian’s eldest sister and her family. So much good food, gotta love a place with a bakery that pumps out fresh donuts all day long. It is right on Skaneateles Lake, one of the cleanest lakes in the US, which seems so odd when it is only about half an hour from Syracuse, home of one of the most polluted lakes in the US.

Downtown Skaneateles from the lake
Downtown is only a couple of blocks long. Skaneateles itself is a village of only about 3000 people. The population increases to about 7000 in the summer when people return to their places on the lake.
Back in Victoria I got my scan results. Conflicting results again. CT and MRI scans were good again but the PET again showed all kinds of badness. That means more scans sooner so at the end of September I had another CT and MRI. I see my oncologist on Tuesday so I should get the results then.
Overall I feel about the same as always. I get a fatigue when I do too much and I have my Bell’s palsy symptoms but they are good one day, less good the next, maybe good again, then really bad. They don’t seem to change much. I still also have lymphedema in my left hand and upper right arm. I really need to go to a massage therapist to get some proper lymph drainage done to get it resolved but I am not super excited about adding more appointments to the already crazy mix.
That is it for now. Time to get ready for the storms that are supposed to be hitting us soon.
Go Jays!!

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