October 13, 2015

Metastatic breast cancer awareness day

Yes, out of all of Pinktober and the entire year, they give us ONE DAY. In honor of that one day, I want to quote from my friend Mandi, author of the blog Darn Good Lemonade

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5 Things Not to Say to Someone With Metastatic Breast Cancer
Posted By Mandi on Oct 13, 2015 | 1 Comment

In honor of metastatic breast cancer awareness day (October 13), here are 5 things not to ask someone with metastatic breast cancer:

1. When will you be done with treatment?

The answer is never. We will be in treatment until we die. Even if the magical NED (no evidence of disease) status comes. Once you have stage IV breast cancer you have circulating cancer cells in your bloodstream that have to be kept in check. The average lifespan is 3 years after metastatic diagnosis.

2. I thought breast cancer had a cure?

You will see 99% and 95% cure rate stats floating around. Those stats say that with early stage detection, 95-99% of women will leave past 5 YEARS. Not live forever. read the fine print. I hate this stat. 20% of women with stage IV live past 5 years after diagnosis of stage IV. 5 years past my stage IIB diagnosis is coming up on December 30, 2015. I am not even going to give you stats that involve brain metastasis, we are already pretty upset at my house these days without stirring that pot. Let’s just hope I make it to that 5 year mark, just need 2 more months eh?

3. But you look healthy?

When I won an award that required I be in active treatment for breast cancer, the other woman there with me happened to be early stage and acted fairly upset that I was there with all of my hair (little did she know 5 minutes after shooting the news spot I had to run and get radiation to my spine). It really upset me, I felt like she seemed to think I was faking my illness and it also concerned me that she knew nothing about metastatic breast cancer (spine radiation was one of the worst things I have ever been through by the way). Just because someone doesn’t looks sick on the outside, doesn’t mean they aren’t sick. This goes for many other diseases that are called “invisible illnesses.” I know sometimes people mean well when they point that out, but we don’t exactly want to look sick and it isn’t a gauge on how we are really feeling.

4. But you got the “good cancer?”

HA! All cancer sucks. Yes, some people live longer with some cancers. Some cancers are nearly curable. They all require crappy treatment and side effects. Let’s just cure ALL cancers and I seriously want to hear how cancer in my spine, lungs and brain is the good cancer, mmkay?

5. Men don’t have breasts, they can’t get breast cancer?

Men do get breast cancer. They actually have the inner-workings of a breast that just don’t actually become them because of hormones. That whole XY chromosome thing. I don’t need to teach you biology, but men get breast cancer and they get metastatic breast cancer. Don’t forget them.

For metastatic breast cancer awareness day, I beg you to share a story of someone you love/loved that has been impacted by stage IV breast cancer, share facts, share what it is. Share that we need metastatic breast cancer research. SHARE! <3 Also, if you have metastatic breast cancer – what did I miss? Add in the comments.

Jill's news:
I saw Dr G today and Monday's CT was "not favorable." I have new mets in my liver and lungs.The lung mets have come and gone over the years and are particularly tiny (5 mm each), so I guess I'm not going to worry about them much.

Dr G wants to increase my dose of carboplatin and add Alimta (pemetrexed). Nurse Jacque said these are given once every three weeks, with vitamin B12 for the Alimta. That shot had a very tiny needle. I'll know more once Premera has approved these chemos. Alimta crosses the blood-brain barrier and has low toxicity, so it's very appealing. We also discussed ixabepilone, cytoxan and a new therapy called abemaciclib. 

He'll get me in to see a radiation oncologist to treat my skin mets and enlarged lymph node. Dr G will also try to get me in to see Dr Julie Gralow at UW for a second opinion. She's a widely renowned oncologist who travels around the world and is most likely to know about new research. But since she travels so much, it may be a long time before I get in to see her.



1 comment:

  1. Aggh! Progression. :( Thanks for the quote/sharing. I need to find out therapies that cross the blood brain barrier. My oncologist is shy about adding anything to my regimen - since I am mostly stable - but I don't count 3 brain mets as anywhere close to stable enough and want something in there that crosses the blood brain barrier. I may be hopping around for second opinions too. <3