Can we undo my surgery please?

When I had my breast cancer surgery the sentinel node was tested and came back with microscopic traces of cancer. It was then deemed necessary to have an Axillary Node Dissection where they take out a lot of lymph nodes in your arm pit to see the possibilities that the cancer has spread further in your body. Mine came back negative. But the damage was done.

When that many lymph nodes (20 in my case) are taken, the lymph system in your arm in permanently compromised and the risk of lymphedema is greatly increased. That would be my problem.

Now there is a new study (because the researchers needed to keep working), that says that if the sentinel node is positive, the better outcome for a patient is to have axillary node radiation instead of an axillary node dissection. There appears to be the same or lower risk of recurrence and the risk of lymphedema is substantially reduced.

This is clearly in the category of now they tell me. Damn. I have lymphedema which complicates my life - and has no cure.

I guess this is what research is all about - figuring out how to improve treatment so that they can prevent complications and reduce risks from previous treatment standards.

Let the patients make the decisions

I'm not sure why we continue to let insurers make decisions for us on our care. I completely understand that an insurer wants to keep an eye on expenses and want preapproval so they can count their beans. But they should not be telling us what care we can get - with in reason.

I agree insurers should not need to pay for cosmetic procedures for example. If someone wants to fix their nose, they can pay for it (through the nose). But decisions which relate to life and death care should not be theirs to make.

A new study showed that women on Medicaid are much more likely to have a mastectomy instead of a lumpectomy - 60% of those on Medicaid had a mastectomy vs. 39% of those with other insurance.

Or are the surgeons making the decision for the patient? The study also points out that surgeons are reimbursed 40% less for a lumpectomy than for a mastectomy from Medicaid. The surgeon should provide the information and the advice to the patient to make the decision but they should let the patients think for themselves, not the doctor's wallet.

The patient should make the decision - no one else.

Price shopping for surgery

We all price shop for things. If the gas station across the street is five cents cheaper per gallon, we might go there. If one brand of milk is cheaper than the other, we will probably grab the cheaper one. Some of us coupon clip and research prices online.

We also all have some splurges. Maybe its hand bags, maybe its shoes, maybe its chocolate. These are the items that we purchase regardless of the price. Maybe its that Coach bag or the Manolo Blahnik shoes that we want no matter what. We just blindly get what we want.

So where should our surgery shopping go? If you think about it, most of us have been treating surgery in the second category as a purchase without looking at the cost. Should we be doing this? Or should we shop around and look at price first?

Two recent studies showed the range of appendectomies (done at Washington University) and hip surgery (done at University of California San Francisco). The first ranges from $1529 to 186,955 and the second $10,000 to $125,000. I'm not kidding. My first thought is that there surely must be some sort of quality variance here but if we leave that out for a moment, aren't these ranges amazing?

In any other circumstance if someone said you could get the same car for either $10,000 or $125,000 - which would you take? The $10,000 of course.

But most of us don't seem to apply this same price consciousness when it comes to medical procedures. Maybe we think insurance will cover it so it doesn't matter to me. Yes  your insurance covers it but high priced procedures are on of the many things causing continual premium increases. Or if I go to another hospital will I have to get a new doctor? Maybe a new doctor will be even nicer. You don't know until you try. Sometimes we get stuck in a rut of going for treatment to the same place.

Wouldn't it make sense to pay a little attention to the price? As part of the health care changes still coming into play medical providers will need to offer some price transparency to patients. But that is still a long way off.

Are we overdoing it?

More women are opting for double mastectomies, even if they do not have cancer in both breasts. Here are the numbers:

"The rate for women choosing to remove both breasts when only one has cancer jumped from 6.7% in 1997 to 24% in 2005,..."

"About 70% of women in the United States who have both breasts removed after a cancer diagnosis don't have a proven medical reason for undergoing the procedure,..."

So why are we doing this? Lots of reasons:

• Implants have fewer problems than in the past.
• Plastic surgery has had many advances.
• We want it now mentality.
• The overly hyped awareness of breast cancer

If we look at these last two reasons, they may be the root of all the reasons. In the past decade or so, we have been accustomed to the instant gratification or instant problem solving. Amazon started bringing us our purchases overnight. Problems are more easily solved. We can find information instantly so we want to fix things instantly as well.

Pinkification has also caused more awareness and availability of information.

"A growing awareness of breast cancer survivorship makes undergoing mastectomy not as foreign or frightening as perhaps it once was. An online search shows a seemingly limitless number of breast cancer support groups, with a growing collection dedicated to women considering preventive surgery.

Dr. Mark Sultan, chief of the division of plastic and reconstructive surgery at St. Luke's/Roosevelt and Beth Israel Medical Centers in New York, said he's seen a 20% increase in five years of high-risk, yet cancer-free women coming to his office seeking mastectomies.

These patients often arrive telling him what kind of surgery they want because they've read about certain procedures online, and in many cases, they've viewed hundreds of before-and-after photos as well."

These are examples of how the world of medicine and being a patient is changing. But maybe we are overdoing it. A double mastectomy is not a minor surgery. I have heard of women being in surgery for 10 or 12 hours with multiple surgeons and months of recovery. Never mind the problems of lymphedema and other risks in the future. 

I think I would prefer to keep my body as intact as possible if I possibly can.

Keeping up with the Jones'

If all your friends jumped off a cliff, would you? The latest fashion in breast cancer treatment is to have a mastectomy, even bilateral, at the least sign of breast cancer. The celebrities are doing it, so why shouldn't everyone else?

Because it doesn't necessarily mean the patient will have a better outcome. So why do patients opt for a much more drastic option when there is a significantly easier option?

The answer seems to be fear of recurrence. The professional reply is that 'No doubt, oncologists could do a better job calming women’s fears and educating them on the long and painful recuperation period involved with breast reconstruction following a mastectomy.'

Not so fast. I know many women who have gone through a breast cancer diagnosis who take time to think and make a rational decision that they really want two things:

1. Cancer out of their bodies
2. Not have to have such intense monitoring for the rest of their lives.

I do know some women who have not made as deep a thought process (like me) and did what the doctor advised. But many others have had a bilateral mastectomy for the peace of mind. Its not keeping up with the latest fashion.