A Rant - Challenges and changes in bc-land

Dear bco friends,

A recent thread on Removal of Primary Tumor Improves Survival for Stage IV MBC

https://community.breastcancer.org/forum/8/topics/...

has got me thinking about challenges and changes in the breast cancer world since I came on the scene in 1991.

At that time, we were barely out of the dark ages. Halstead radical mastectomies had given way to complete mastectomies. The French and more conservative American surgeons/oncologists were beginning to focus on preserving the breast with lumpectomy and radiation. The old standard of biopsy in the hospital under full anesthesia meant women went under not knowing whether they had cancer or if they'd have a breast when they came to.

It was a frightening time.

In 1991 the state of the art was biopsy first, then lumpectomy and radiation...but also removal of an entire packet of lymph nodes from under the arm - there was no sentinel node biopsy. Women who wanted reconstruction were typically offered implants at time of mastectomy - inserted under the pectoral muscle and pumped with fill over weeks until desired size was achieved. This was followed by replacement with the implant - usually silicone fluid in silicone form, though women were starting to ask for saline implants.

I don't remember the women in my early support group getting the more major reconstructive surgeries using muscles and belly fat. Though I do remember someone whose labia were grafted to become her flesh-toned nipple.

What we now consider obvious or state-of-the-art wasn't always so!

Tamoxifen was the new kid on the block (we'd been taking Megace and DES) and aromatase inhibitors unheard of. There were fewer chemotherapy options and the anti-emetics really sucked vital energy and guts. The first Herceptin trials hadn't begun yet and our tumors weren't tested for HER2 or other, now common, characteristics.

Gradually, as more studies have been done and more statistics accumulated, evidence-based medicine has more recommendations for us - and they don't always support what we want or need! Many guidelines are counter-intuitive.

I read the medical literature religiously (though it's not my religion!), because I want to know what the studies show and how doctors think. Are they too aggressive? Uncaring? Neglectful of important data in framing their studies? Are they aware of their patients' needs and how that might conflict with statistics and study results?

Some of the topics that puzzle researchers and clinicians are:

* How to encourage cancer prevention lifestyle choices without blaming or belittling the patient.

* How to support their patients' emotional well-being without suggesting their suffering is all in their heads or they just need an antidepressant or anti-anxiety prescription.

* Increasing numbers of mastectomies - wouldn't a woman want to keep her real breast when the option of lumpectomy + radiation is = to mastectomy?

* The rise of mastectomy of the unaffected breast. The risk of another cancer in the opposite breast is much lower than the risk of metastasis elsewhere in the body, even with lobular cancer.

* The over reliance on reconstruction as an achievable, viable option.

* Women who are willing to go flat - without reconstruction. Many surgeons leave skin/tissue thinking that the woman will change her mind and want reconstruction later - that leads to an additional surgery to remove "rabbit ears".

* BRCA and genetic testing without genetic counseling - especially for those with no family or personal history of breast, ovarian or other cancers. This leads to individual decisions about prophylactic surgery and also affects the whole family.

* Over treatment of DCIS which isn't really cancer, but could become cancer and is treated as such by both patients and their doctors.

* Mammogram recommendations - when to begin and how often to do them? Whether to alternate with MRIs and ultrasound? Is early detection better? What about lead-time bias? Screening in people without signs or symptoms of disease?

* Integration of holistic, complementary and alternative approaches to patient healing, self-help care (less reliance on expert advice).

* Patients with hormone positive breast cancer who want aggressive chemotherapy at a metastatic diagnosis..rather than the tried and true anti-hormonal approaches.

* Over treatment at the end-of-life, rather than palliative or hospice care.

I could probably think up a dozen more issues where patient views, actions and needs vary from research/clinician evidence and experience.

Part of the problem is that medicine and science aren't the only drivers of the cancer bus - politics, economics, culture, advocacy groups and patient understanding (or lack of) also set the treatment course for most of us.

Each of is an "N of 1", not a statistic. On those life-death scales, we are either alive or dead, even if some of us feel half-dead from disease or treatment. Breast cancer, especially the metastatic kind, is mind-bindingly frustrating. Our cancer bus often shoots off the road and into the ditch or maybe down the cliff to the deep, blue sea. This is truly the land of don't-know-mind (which isn't as glamorous as the Zen Buddhists make it out to be.)

Cancer care is art with a bit of science - but science and medicine aren't the drivers. Nor are we the innocent victims passengers. We are on this bus together and must collaborate to get the care we want and need.

I believe we must be engaged - keep up with the research and changing treatment options while seeking what we need to support our full health - psychic, emotional, mental and social, as well as physical. A medicine that focuses on only the cancer OR only on the patient's body is a partial medicine, not really a guardian of our health and well being.

Okay, rant over for now.

sending loving kindness for all, Stephanie