Sunday, August 7, 2016

What I Wish I Had Known

As a breast cancer, or actually any kind of, patient, we often have complained about what I wish I had known before treatment, especially surgeries. I know I have whined blogged about it so many times myself that I can't even begin to list them all.

One big area of complaints is what I wish I knew about surgery before I had it. The lymphedema risk was sort of explained but it didn't sink in. Maybe my brain was preoccupied with 'my overwhelming second cancer diagnosis' so it just didn't register. Or maybe I just thought it would never happen to me, like any cancer diagnosis.

But I would like to make the case on the 'Angelina Jolie Effect' where many women are having prophylactic bilateral mammograms because they can. There definitely are instances where a prophylactic bilateral mastectomy is the best treatment option - especially BRCA positive or strong family histories, but not all.

Now breast cancer surgeons are pushing back on this saying that patients do not understand the full ramifications of this surgery. The doctors agree that women have the right to make the decisions about their body but they really want everyone to understand what it will really entail.

""It's a very difficult decision," ... "We think that any woman who wants to have a prophylactic mastectomy ought to be able to have a prophylactic mastectomy. However, we also believe that if more folks understood the statistics and understood the real facts, fewer people would be getting prophylactic mastectomy than currently are.""

See that's the kicker. Not everyone quite understands that impact of removing both breasts - both surgically and emotionally. Its not a in and out surgery. Its a long surgery, 10 hours even, and then can require numerous follow ups. And it may not look the way the patient expected. And cancer can still recur, even if less frequently.

So how do you make sure the patient understands? I really am not sure. Going back to my experiences with lymphedema, I had a separate appointment before surgery with a nurse on how to help prevent lymphedema immediately after surgery and in the long run. I was given printed materials and directed to on line resources. What else could they have done?

Even if they told me if you trip and fall, do not put out that arm to brace yourself or you will lymphedema. That is what happened to me. I could not have avoided that fall which started the lymphedema lifestyle for me unless I stayed inside all winter (I slipped on ice in our front walk on snowy day).

Last summer I took a fall and ended up fully tearing my ACL in my left knee. Because of my RA, I am not a good candidate for an ACL repair. First of all, the RA would probably leave me with a stiff knee which isn't much better than a less than supportive knee. Second of all, the ACL repair would make the knee replacement (that I really do need) less likely to work as well. It took two surgeons explaining this to me several times until I finally got it.

So what would it take to make sure patients understand what they are requesting? The multiple surgeries, the implants, the reconstruction, potential side effects, and more all would need to be detailed. Meanwhile the patient is sitting there thinking 'get it out of me NOW!'.

Its not easy. The patient is very stressed and coping with their diagnosis while simultaneously trying to figure out which treatment options they would have. I agree with the surgeons here that patients need to have a full understanding of the results of their surgery and that patients really need to do their part and pay attention.

1 comment:

Rebecca said...

I wonder if it is the surgeons that should be making the recommendation ... I wonder how the recommendations would change if we actually had patients involved in the recommendation process?