Sunday, October 13, 2013

The things that I'm afraid of

Note: This has been a very difficult post to write, and I sure it will be difficult to read. But I want to tell the truth about breast cancer. And the truth isn't pretty.

It's been almost 5 years since my breast cancer diagnosis, and I'm doing well. My surgery scar is healed, my only major side effects from the Tamoxifen is hot flashes and (ahem) weight gain, and overall I'm feeling fine. However, there are two words out there that still -- and probably always will -- make my breath catch in my throat:  recurrence, and mets.

First, recurrence. Every breast cancer "survivor" worries that even thought she is "cured" or NED (no evidence of disease), that some day she will have a recurrence of breast cancer. The breast cancer could come back in the same breast, although this is less likely if you have had radiation therapy. Even a woman who has a mastectomy could have the breast cancer return in the scar or chest wall. According to Susan Love, this happens about 10% of the time.

You could also get another type of cancer in the same breast, your other breast, or someplace else in your body. This isn't technically a recurrence: it's another "primary" cancer.

Another thing that can happen is that you can get metastatic disease, known in the cancer world as "mets" for short.  Every breast cancer "survivor" worries that even thought she is "cured" or NED, and even though she had chemotherapy and suffered through nausea and hair loss and chemo-brain, and even though she took Tamoxifen or an Aromatase Inhibitor or some other estrogen-blocking medication for 5 years and suffered through hot flashes and aches in her bones, that some day, a tiny cancer cell will spread through her lymphatic system and take residence in her brain, her liver, her lungs, or another organ, and start growing there ... and she will have mets. Stage IV breast cancer. There is no cure for Stage IV breast cancer.

The good news is that metastatic disease has become somewhat of a "chronic" disease, with many treatments available, each of which will work for a time, and then the care team will move on to another. So women with mets can often live for many years.

The bad news is that eventually, the disease will win. Women can live a long, long time, but there is no "cure" for metastatic disease.

Dr. Susan Love explains how women get mets like this:
In order to metastasize, cancer cells have to evade the body's immune system, make new blood vessels, travel through the bloodstream, figure out what organ to go to, break out of the blood vessel, get into the new organ, and set up a new home. But even when early metastasis has occurred, it doesn't necessarily spell doom. Let's say that the cell has successfully made the journey to the lung. Once it arrives there it has to establish a new home by making new blood vessels. It's possible that other cells in the lung may be able to keep these invaders under control. The cells then act normally until something happens—a change in the lung's environment or a new genetic alteration occurs that allows the breast cancer cells to grow in the lung. This might explain why some women will have a recurrence of breast cancer many years after the first diagnosis. Those cells were there from the beginning but were dormant until the right conditions induced them to grow again.
There is an active and supportive metastatic breast cancer community, and some of the organizations include Metavivor and the Metastatic Breast Cancer Network (MBCN). 

I know people who've had recurrences, who've had new primary cancers, and unfortunately, some who have mets. I have a cousin and a friend who both died of mets related to breast cancer, both in their 40s. And I have a college friend who died of mets related to lung cancer in her 40s.

There are some women who write very eloquently about living with Stage IV breast cancer, such as Lori of Regrounding and Lisa of LisaBAdams, and Nancy of Nancy's Point doesn't have mets although her mother does, and she posted a page about mets that is full of wonderful information. I admire these women for having the courage to write about their experiences, no matter how difficult or painful.

The truth is, every now and then I go to a breast cancer blog to see what's up, and that person has died. Yes, died. It's devastating. Sometimes the husband or partner will continue writing on the blog, and that's painful to read, too.

Even though breast cancer is being discovered earlier and earlier, women are still getting mets and dying from mets at the same rate as they were many years ago. So early cancer treatment is not preventing mets. This is really important, and really difficult, to understand.

Archie Bleyer, M.D., and H. Gilbert Welch, M.D. wrote an important article in the New England Journal of Medicine about mammography and breast cancer, and one of their conclusions is this:
Despite substantial increases in the number of cases of early-stage breast cancer detected, screening mammography has only marginally reduced the rate at which women present with advanced cancer.
Early detection and treatment are NOT preventing mets.

So today, October 13, is Metastatic Breast Cancer Awareness Day, sponsored by MBCN. You can read more about it here. Here is something posted on the site:
Oct 13 is National Metastatic Breast Cancer Awareness Day. We are the Debbie Downers of the breast cancer world--feared, ignored and underfunded. Most people are familiar with early stage breast cancer. Metastatic breast cancer is very different. Treatment is ongoing and unrelenting for the 150,000 US women and men living with this incurable disease. To learn more, visit
So the truth is, I'm doing fine right now, but there is always a chance that I could get a recurrence, or mets. So there is really no "cure" and no "cancer free." There is only waiting, living, and hoping.

1 comment:

Anonymous said...

Great article, Adena! I think you capture the reality of always knowing it could be out there very well. I think, I hope, the message that we are all just a scan away from Stage IV, is getting out there. The challenge I see is to figure out how we join our collective voices together. Those of us with mets have a lot to offer others in terms of our learnings, and those with early stage disease have voices that, like yours, can help support movement forward!

AND thank you for including my blog. I am truly honored.