An Open Letter to the Cancer Patient Community
I thank everyone for their comments to my Open Letter to Fran Visco and I sincerely apologize to any non-metastatic patient who felt I was pejorative to his or her situation. I can assure you it was entirely unintended. That blog is not the only item of late that prompts this response. More and more we are seeing arguments of one-upmanship (on issues of pain), on funding (who deserves the most) and we see a growing rift between patients in the early stages and the last stage of breast cancer as well as between different cancer types. So let’s clarify a few facts.
Divisiveness between cancer stages and types
Twelve years ago I too was an earlier stage patient but I only now, thanks to Liza Bernstein, realize that even though it was only twelve years ago, my familiarity with that perspective is from a different era – a pre-social media explosion era - and I believe that has made a difference in the way I look at it. For me, I was briefly devastated, then went through treatment and moved on … until a year later when a metastasis stopped me (not quite) dead in my tracks. However, times have changed.
Facebook (2004) and Twitter (2006) were not in widespread use until a number of years after I metastasized. Back then support was limited to online discussion groups. Online references, if metastatic breast cancer was mentioned at all, were limited to the same single sentence: “Metastatic breast cancer is the spread of breast cancer to distant, non-adjacent organs, most commonly the lung, liver, bone or brain.” There were no awareness campaigns and organized patient groups were just getting started. Thus most early stage breast cancer patients I knew went through a year of treatment, came out on the other side, moved forward and put it behind them. If one of their friends subsequently metastasized, for them it was an isolated event. This is rapidly changing.
Today, likely due to a highly active social media environment, friendship circles are enormous and access to information almost limitless. With so many friends it is inevitable that some develop breast cancer and a portion of these metastasize. In addition, METAvivor’s awareness campaigns, blogs and videos have repeatedly put the statistics and other facts out there. Early stage patients are now far more aware of their chance to metastasize than those at the time of my metastasis were. And many have in all likelihood gone through the entire process with various online friends – giving them insights I did not have in my pre-metastatic days. This has certainly increased their concerns and the stage IV community is adding to their problems by being divisive when we should be inviting them to join our cause. This is not a time to place everyone on a worry scale at the level we think they should be; this is a time when we should be glad there are people qualifying for that scale – people who by virtue of their diagnosis truly “get it” in a world where very few do. But this is not happening. Instead, we are more divisive than ever.
So let’s look at the facts. Yes, I would venture to say that 95 - 99% of metastatic patients would jump at the opportunity to trade places with an early stage patient. And I would venture to say 95 - 99% of the earlier stage patients would decline to so. But can we truly say our concerns are greater if we haven’t walked in their shoes? No, we can’t. Let’s just accept that we all have serious concerns.
Divisiveness on Cancer Funding
I have heard that some metastatic breast cancer patients have told patients with other cancers that metastatic breast cancer needs and/or deserves more funding than they do. Let’s set the record straight.
If you look at research funding overall for cancer – all stages and types - we can divide that funding into two piles. One entire half goes to breast cancer. From the second pile, lung cancer takes a chunk off the top, then all other cancers must vie for what’s left. Narrowing it to metastatic cancer, while our chunk of the breast cancer research funding pool is paltry indeed, it nevertheless gets far more than stage IV cancer research for any other cancer. NO ONE should be arguing that breast cancer deserves more than the other cancer types. We already have far more than everyone else. All metastatic cancers need more research funding.
