Medical research and me

Finally a study for me, sort of. In a recent study, they found that women with breast cancer were more likely to be diagnosed with thyroid cancer in the five years following their initial diagnosis. And vice versa, with thyroid cancer, you are more likely to be diagnosed with breast cancer.

So I am not really in the study because my cancers were 26 years apart. But its nice to get some logic for my medical crap.

The more complicated explanation is:

"The authors wrote that those second primary tumors detected within 5 years of the initial primary diagnosis show “favorable histopathological findings and prognosis,” especially in TC patients subsequently diagnosed with BC, and thus close monitoring for BC may be beneficial.

“Although the increased incidence appears to be principally due to increased detection rates, the greater expression of estrogen receptor and progesterone receptor in BC in patients with co-existing TC suggests that a specific molecular pathogenesis might underlie this association,” they concluded."

So whatever a 'histopathological finding' is and 'molecular pathogenesis' might mean, there may be some kind of reasoning behind my cancers.

As a patient, I hear about studies and clinical trials and more and they never seem to relate to me very much. Because my medical history always is different from everyone else. Its nice to have a study that could explain some of my medical stuff.

I have always been the patient who was too young for cancer, not likely to have rheumatoid, etc. But since I got all them anyway, even though I 'wasn't supposed to', I often am outside all normal parameters.

Stress

I hate stress. I haven't been getting a lot of sleep recently. Why? Stress. We are house hunting. We actually have sold our house and have just over two months, preferably less, before we have to be out of our house. And today starts craft show season where I am busy every weekend now through mid December.

And house hunting is no fun. We sold our house quite quickly. We haven't found a house to buy. Well we have made several offers - we lost the first one because they misled us and let us think they had other offers in. Then they wanted to keep taking other offers until we sold our house. The next house had an accepted offer in by the time we got ours in - two days after it went on the market. The third house seller actually went with another offer, even though we think ours was higher.

Last weekend we thought we found 'the' house. We made an offer which was accepted. We had a home inspection and found that house has so many problems its barely livable. The minor stuff mold in the attic, failing lolly columns which support the first floor, and a completely rotted out back wall that needs to be replaced. All are significant safety issues so we said no. (And now the house is back on the market with no mention of any of the issues.)

Yesterday we found another house. We are making an offer. We have our fingers crossed. And the stress goes on.

At least its not medical stress. Well there is some of that as well as my knee doctor has told me I am not a good candidate for ACL repair surgery because of my RA. We are in 'wait and see'  mode for another few months.

Important but scary clinical trials

We always hear about these new lifesaving drugs that are discovered and going through clinical trials. The good part of clinical trials is that they help other patients who get their diagnosis later on. It is also supposed to help the current patient who has a late stage disease for which there is no cure.

There is a scary side to clinical trials for these late stage patients. Will the new drug kill them or cause horrible side effects?

As patients we hear about clinical trials and how new drugs are always coming out and if we go on clinical trials they will help future patients. 'You are doing something good as well as trying to save your life.'  That is the Rah-Rah-Take-One-For-The-Team attitude that pushes forth on the wave of clinical trials. You can do it! You are helping others!

But no one ever talks about the fact that the clinical trial drugs are very unproven, which are why they are in clinical trials, and not much is know about them. The official definition of a stage I clinical trial is:

"Phase I: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects."

So not much is know about its safety. Will it kill the patient? Will the side effects be horrible and weaken your body so you cannot handle other future medications?

I never really thought about this until I read this article, 'Breakthrough drugs are saving lives but wrenching souls', the other day.

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.

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.

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.

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.