Pre-Treatment Education

So you get a crappy diagnosis, I have had a few, and you instantly want your body fixed! Quickly you rush to the surgeon and get the nastiness removed. With cancer, after surgery you usually get more fun with treatment such as chemo and radiation. Then pow, your body starts protesting and you instantly end up with multiple side effects, including ones that could cause permanent damage to your body and require additional surgeries.

This scenario is not that uncommon with breast cancer patients. Women want that thing out! They have surgeries and chemo and radiation. I have friends who ended up with problems with their mastectomies which required multiple more surgeries. Some have suffered through problems with the 'donation' site on their bodies where tissue was taken to create a 'foob' after a mastectomy. I have a friend with permanent cardiac damage as a result of chemotherapy. Me, and others, have lymphedema as a result.

The rush to surgery means lack of attention to potential side effects and body changes, both physical and emotional. Not enough attention is placed on the after effects. I have always thought that with both my breast cancer surgeries and treatment and many other medical procedures.

This morning I read over at Hen Backtalk and found a link to an article talking about what kinds of tests to request before treatment. While the doctor, author of the article, focuses on specific tests before breast cancer chemotherapy. But I believe this is true, I think this is a very valid point. Not enough focus is given to this part of the medical decision making process.

Doctors and other medical professionals usually can't give us all the details because they usually have not had the treatment protocol themselves. I think if you are facing a major medical decision, especially cancer treatment, find someone who has been through this themselves before making any decision. Cancer surgeries are usually focused on removing as much of the cancer as possible and getting clean margins. So with breast cancer, for example, you might end up very 'lopsided' due to the need to get the clean margins. You can't have enough information before major surgery.

This is where support groups and online forums can be so helpful. Don't be shy, get out there and ask your questions. Find someone who has gone through the procedure and decision process you are facing to learn about side effects and after effects in general. Education is always good.

Getting the 'good advice'

Becky, over at BCBecky blogged about The costs of cancer treatment. I read her post and then commented on it. And then, I started thinking (sorry, I do think sometimes).

In her blog post, Becky talked about the costs of treatment, but not just the financial ones. And the sustainability of keeping up with her current course of treatment. Of course she has advice from people who may not have had cancer. My thought would be talk to the people who have had cancer and had to make the same types of decisions and then make your own choice.

I really think that as those who have had cancer, we need to take our learned knowledge and help others who are facing the same decisions. After a cancer diagnosis, we have gone through so much as we made decisions, coped with the treatment, and are still here to talk about it. So why can't we help others?

In making our decisions, we had to educate ourselves  and go through the decision making process. We learned the 'unsaid' portions of the decisions we made. For example, I do not know a single woman who has gone through breast cancer, with a mastectomy, and reconstruction (not me) who has not said 'I wish they had made sure I understood that part', 'I didn't realize that until after' or 'I don't think I knew it would take so long' and other statements.

Honestly I know there are many decisions I wish I had  known more about my options before I chose. Some of the best advice I ever got was from my friends who had been through the same crap. Because they knew. The doctors couldn't tell me. The nurses couldn't tell me. I think they assumed I would just take their suggestions and be a lemming.

But only by talking to my friends with breast cancer, or whatever ailment I needed to make a decision for, did I learn 'the truth, the whole truth, and nothing but the truth'. None of them had medical training or social workers or anything like that. But the difference was they had been through it themselves. If we could provide 'good advice' to others, that would be great.

The rush to (over) treat

We all know the two groups of people:

The ones who get a booboo and say 'no big deal' and clean it later, even if just in the shower later on, vs. the ones who rush for the antibacterial soap, alcohol, bacitracin or neosporin, and bandaid. Well maybe they aren't two solid groups but there are two sides to the equation with scatterings in between. 

With breast, or any type of, cancer, there is often a rush to say 'get it out of me!' But that is starting to change, especially in view of concerns with overtreatment of DCIS, that some people say 'I'll wait'. I can see that.

I think the typical patient has lemming traits where they agree basically with what the doctors tell them, and if they do not agree, they find another doctor who they agree more with. How often do we stop and say, 'now that I know what it is, I can wait and make a decision'. I think we need to stop and think with a diagnosis and say 'what are my choices?' and 'can I wait?'  And not to skip 'what are the pros and con's of immediate treatment'.

Doctors are also starting to change their train of thought as well.

We have learned so much about the side effects of treatment that I think they need to be a big part of our medical decisions. And we should consider no treatment among the options. Its my body and my choice.

Making medical decisions

When you get an icky medical diagnosis, what do you do? I don't mean something like a broken bone, I mean something where the doctor gives you your options and recommendations and tells you to take some time and give it some thought.

Do you seek advice from others, discuss it with your spouse and family members, or research and make your own decision? I probably do a combination of the last two - I will do some research and talk to my husband. And I make sure its my decision and not what anyone else thinks - especially their recommendation from their cousin's hairdresser's neighbor's mother in law's dogwalker.

I realize there may be times when I am not able to make the decisions - if I am unconscious or something. This is why my husband knows what I want to do.

A recent study (because we need more studies) found that doctor's see family disagreement and patient denial as barriers to decisions about care. I make a  point of avoiding the first part by making my own decisions.

I know I have gone into denial when faced with some diagnoses. As Adam says in the movie 50/50, 'but I recycle!'. I think we all go into denial when faced with trauma. "Did I really miss that stop sign?".

Denial is a normal reaction. But if it lasts too long, it really can impede medical decisions - no I am not sick! I think doctors realize this and are trained to help patient's through it. But when family disagreements get in there, the doctors shouldn't have to convince an entire clan of people as to what is best.

I think we need to prepare for times like this by keeping our selected family members informed of our decision thought process. What is it? "An ounce of prevention is worth a pound of cure?"