Published November 7, 2013, By Dr. Susan Love
This week has been a tough one. Not only because I have had to travel to the East Coast twice (I am the one sitting on the plane with a mask on, Purelling the seat because of my continuing immunosuppression from my transplant) but more importantly, because of three things that have put me over the edge. I met in Boston with a patient of mine from over 20 years ago who at that time was diagnosed with DCIS. I operated on her several times trying to get clean margins and ended up doing a mastectomy. She is doing well for her age but what got me angry is that we have not progressed in 20 years. Women are still having surgery with dirty margins and mastectomies. Why don’t we have a way to image DCIS so that we can see its extent prior to surgery? Why haven’t we figured out who is in the 30% that needs treatment and who isn’t? Why hasn’t anything changed?
I then got a call from a young woman pregnant with twins whose breast cancer had locally recurred. What should I do, she asked? The answer is we don’t know! She has enough to deal with in terms of the pregnancy but we can’t tell her whether carrying the pregnancy to term will make a difference in the outcome. In my 32 years of practice, we have progressed enough to parse the 5-6 different kinds of breast cancer but not enough to know what to tell this young woman!
The final straw was reading all the questions you submitted on collateral damage. It broke my heart to hear about the women who had not been told that their reconstructed breasts would never have sensation, that chemo brain doesn’t get better, that all these drugs cause significant side effects, most of which don’t go away!
What have we been doing over the past thirty years? There are a few big wins. Herceptin means that women with HER-2/neu overexpressing tumors don’t die within three to five years as they used to. Knowing about and being able to test for the BRCA 1 and 2 gene mutations means we can sometimes actively prevent cancer, although through very crude means; i.e., prophylactic surgery. And we now have a better handle on who benefits from chemotherapy and who doesn’t, saving some women significant side effects. But really….in 30 years? Shouldn’t we have taken care of this by now?
And who is to blame? I think the answer is all of us. Sometime during the last thirty years, we allowed ourselves to become complacent, accepting slightly better treatments as triumphs and cosmetic surgery as better than nothing. We accepted awareness as a goal rather than prevention while “celebrating“ more survivors every year. THIS IS NOT ACCEPTABLE TO ME OR TO YOU, MUCH LESS TO FUTURE GENERATIONS!
It is time to all join together whether metastatic or not, BRCA+, triple-negative, young, old, male or female to say ENOUGH! We will no longer accept “me too” drugs that are slightly better or chemotherapy that adds a couple of months to someone’s life.
We want the home run and we want it now! We will not be good girls any longer!
Get angry, get your friends angry, then do something about it. Be a part of our research through the Love Research Army and the [HOW] Study, sign the NBCC’s Deadline 2020 petition, invest in our research by creating a local fundraising event to help us keep pushing the envelope. Or do all of the above. Don’t settle for good enough.
It is time to rekindle the anger that started the breast cancer advocacy movement 20 years ago but this time we will not stop until we have achieved a future without this disease!