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.

Being a complainer

There is a difference between complaining and being a complainer. I complain sometimes, we all complain. And we should. We should speak our minds and make our wishes known. But if we complain too often we can become complainers where we are either Chicken Little or the Boy who cried Wolf so that when we have real complaints, they get lost or overlooked.

Here is a tale of a complainer who complained so often that her complaints became overlooked and she ended up diagnosed with stage IV thyroid cancer and died from it which lead to a malpractice suit.

I think there are a couple issues in this story. The patient complained so much and spent so much time talking about other issues that it became difficult to discern real medical issues from other issues. Of course her doctor could have done more to figure out the cause of her symptoms but he and a specialist could not find anything that significant and attributed the diagnosis of acid reflux  as the cause, which is very common.

When I am the patient, I come in prepared for my appointment with a list of questions to make sure they were all addressed. I would have also kept the list from one appointment to another to make sure something is being done to find out what is wrong with me. And if it dragged on to too many times I was back in for the same thing with no change or resolution, I would get pushier and want more options.

With my medical background, I know you are never too young, too old, or too anything for a diagnosis.

I also know all medical personnel are busy and need to be told a story about a complaint. Don't say 'I have a pain', say 'I have a pain when I do this or eat this', etc. We need to make it easy for my doctors to get to the bottom of the problem. We don't need to share pictures with them or tell them about the rest of our lives. We need to give the  medical professionals as much information relating to our health problems to help them help us.

We should not be complainers but we should tell about our complaints so we do not end up like the patient in the story.

Good things come to those who wait

Back in 2010, I blogged about wishful thinking for a cure for lymphedema and other things, like cancer. And now, (insert drum roll here), a study is going on in the UK on 'replumbing' lymph nodes after breast cancer surgery. Barbara Jacoby over at  Let Life Happen blogged about this.

So five years after first hearing about this surgery to reattach lymph nodes now there is a trial going on. This doesn't mean I can talk to my doctor about having this surgery any time soon, but I can see the progress.

The world of a patient is filled with hope and waiting. It is nice to see that progress is happening once in a while. We hear about all these breakthroughs but then it is rare to see them start to actually be rolled out. That is when good things come to those who wait.

We just sometimes get sick of waiting so long.

And I would like to point out that there is no way that I will undergo a five hour surgery under local and use my other arm to read a book or use an ipod during it. I will be fast asleep so I don't freak out. Yuck.

Palliative care instead of chemo for late stage cancer

I've been reading this morning, I'm sorry. Over at Breast Cancer, But Doctor I Hate Pink, Ann blogged about being healthy enough for more chemo as she deals with progression of her metastatic breast cancer (and she is giving away a fitness watch). I started thinking (which can be a very bad thing) about the general yuckiness of chemotherapy and cancer treatment. I hated it. I don't know anyone who doesn't hate it. Its not fun. It makes you feel like crap, unable to eat, while 'curing' you.

Then I read about a nurse with metastatic breast cancer who opted not for cancer treatment but for palliative care. The more I read, the more I like the idea. If there is no cure, why are you spending so much time on trying to cure yourself? This route really appeals to me. She found a doctor who did not push traditional cancer treatment but went for palliative care. After five years since her diagnosis, this nurse is still feeling pretty good. And its much less expensive.

So if you had an incurable ailment where the only options were pretty  nasty - radiation, chemo, surgery - and would weaken your body, why opt for trying to cure instead of making yourself feel as good as possible? Why go bankrupt when there isn't a cure? The bankruptcy isn't just your finances but your emotions and body too.

More 'wonderful' news for me

I have to stop reading the news, damn it. I have tried to wean myself off the news, particularly medical news, Then I stop feeling educated and start feeling like a stupid patient. And if I stopped reading all news I could skip all elections and their related stupidity and inanity. But I haven't been able to stop, so I keep reading medical news and sometimes I find all sorts of stuff I may or may not want to know.

So today I have all sorts of  'great' news' I am not sure I wanted to know, well some I do like and some I don't.

First let's start off with the news that in view of huge increase in thyroid cancer diagnoses, new recommendations are that small papillary thyroid cancers be left alone and not treated.

"An increase in thyroid cancer diagnoses has led to unnecessary biopsies and surgeries. New guidelines from the American Thyroid Association endorse close observation as a possible treatment option for many small papillary thyroid tumors rather than surgery. The guidelines also caution against biopsies for many small tumors and say that when surgery is required, partial — not total — removal of the thyroid should be considered."

After a total thyroidectomy, the usual treatment for any thyroid cancer, the patient is left without a thyroid and requires lifetime follow up and medication. Thyroid cancer is slow growing and some unlikely to ever cause problems for the patient. This isn't that bad and it does show more progress in thyroid cancer treatment - instead of the usual 'one size fits all' approach.

Second, patients who are diagnosed with thyroid cancer and breast cancer are tested for Cowden's syndrome, a genetic trait which is characterized by the diagnosis of several cancers.

"Approximately 1 in 200,000 people are affected by Cowden disease and those who have the disorder have about an 85% lifetime risk for breast cancer and a 35% lifetime risk for epithelial thyroid cancer. Cowden disease is also associated with elevated risks for uterine, kidney and colon cancers."

I was tested for Cowdens and told I did not have it. And was told that I could have another mutation for which a gene had not yet been discovered. Now "Researchers have discovered a new gene, SEC23B, associated with Cowden disease, an inherited disorder that increases risk for thyroid, breast, endometrial and other cancers." This is real progress in that more than one gene mutation can cause similar problems.

So maybe there is a gene for me which would explain my unhealthy body. A note about gene mutations is that they do not have to be inherited, they can mutate just for you.

I saved the best for last. Rheumatoid arthritis has been shown to shorten your lifespan. Yippee yahoo. I needed to know that.

"Rheumatoid arthritis may raise the risk of early death by as much as 40 percent, with heart and respiratory problems the most common contributors to a shortened life span, a new study suggests."

And did you  know that some RA medications can cause respiratory problems? Since my diagnosis I am back to yearly chest x-rays.

See I really need to stop reading medical news. Its bad for my mental state, whatver that may be.