They did it again

I hate it when this happens. A medical standard protocol is decided to be not good and may cause long term harm. I find it frustrating. I go to the doctor and get the best care I can. I do my part to cooperate and take my pills or whatever is decided is best.

Then they change their minds.

For many years, TSH (Thyroid Stimulating Hormone) was suppressed as much as possible - to barely traceable levels - maybe 0.3 or 0.4 whatever thingys they measure by. The theory was to keep it as low as possible to prevent possible recurrence of thyroid cancer.

Now they say keeping it that low doesn't provide additional benefit in preventing recurrence but can also contribute to osteoporosis in patients.

"Wang concluded that there's no recurrence benefit with TSH suppression, but an increased risk of harm, particularly for osteoporosis in women, and care should be taken with regard to TSH suppression in these patients who've had thyroidectomy for low-risk disease.

Ronald Koenig, MD, PhD, of the University of Michigan in Ann Arbor, who was not involved in the study, said the findings "raise the question of whether TSH suppression is in fact necessary."

"More data are needed from a larger series of patients to inform practice guidelines, but these findings are potentially impactful since they highlight an area where revision might be indicated," Koenig told MedPage Today.

While I do have a strong family history of osteoporosis, I was diagnosed with osteopenia, the  precursor to osteoporosis in my late 40's which is very early). Right now it is stable but the usual only trend is downward.

Could this be linked to my suppressed TSH levels for the past 32 years? There is no way to tell at this point. But thanks for making the change an making me doubt my medical treatment.

More cliff news

Finally I caught up with my oncologist yesterday. She could still barely talk after being out with the flu but I had called after I waited nearly a week. I saw her nurse practitioner on Monday and called after lunch on Friday. I thought that was long enough to leave me dangling on the Femara cliff.

Last August when I saw her, she was all set to take me off Femara at this visit. We talked about it so I could emotionally prepare for the cliff of the end of breast cancer treatment. I did stress over it, think about it, whine about it, and otherwise cope maturely.

When I went to my appointment on Monday she was out with the stomach flu so I saw one of her nurse practitioners who indicated there is new research so maybe I wouldn't be going off Femara right away (despite my stress, whining, and thinking). And that is the case.

There is new research in the past month or two that says that more might be better in terms of breast cancer treatment. It has been thought that ten  years of Tamoxifen might be better than five for premenopausal women. Now it is thought that up to ten years of Femara might be better for postmenopausal women. And for people like me who had over two years of Tamoxifen and switched, originally aiming for a total of five years of hormonal treatment, it is thought that five years of Femara plus the two plus years of Tamoxifen is better.

So now here is the new plan. I will continue on Femara for up to two and one-half more years based on how my bones/osteoporosis are doing for a total of five years on it if possible. We will assess after each annual bone density test in May. I can also be treated for osteoporosis while on Femara so that is an option as well.

I am a high risk for osteoporosis due to a strong family history, synthetic thyroid hormone is also hard on your bones, and Femara is really hard on your bones. Combined with all that, I had osteopenia (precursor to osteoporosis) before I started all this breast cancer crap (and crap it is).

This has been the story of my cancer treatment - I am always the 'different' case - because of your medical history we need to be sure. Triple grr.

Damn the new research and the stupid moving cliff.

Vitamin D

Take calcium and Vitamin D as you get older, blah, blah, blah. Just some more stupid advice we need to follow to keep the vitamin companies in business. I have osteopenia which is getting worse over the years. My mother, aunts, and grandmother all have osteoporosis. My grandmother and one of my aunts also broke their hips.

Between the thyroid non-existence (which I think has impact on calcium absorption) and my family history, as well as being on Femara and a few other of my ailments, I have had bone density tests for more than five years now. The most recent one showed progression of my osteopenia. I do weight bearing exercises three times a week. I take calcium and Vitamin D. The next step will be some kind of medication. There is hope that once I am off Femara my bone density will come back a bit.

So as I diligently take my 3 calcium/Vitamin D tablets each day, I am hoping for the best. I take all three tablets together even though you are supposed to take them spread out. I tried that it meant I forgot to take usually two of them - my brain couldn't handle that many pill takings in a single day.

Now this new study has come out (because we needed another study) that shows that you need to take 800 IUs (International Units - whatever they may be) of Vitamin D for it to make a difference in preventing bone fractures. The article only came out last Wednesday and it has taken me nearly a week to finally remember to check my vitamin bottle to find out that I have been taking 1200 IUs of Vitamin D all along so at least I am doing one thing right.

Its nice when a study confirms that what I am doing is mostly right for once.

Tell me more!

This morning I was bouncing around the internet looking for worthy blog topics and came across a tiny article which doesn't tell me enough.... (Do you think I come up with this stuff by myself? I always have to search for ideas. Sometimes I find things to write about and then forget about them before I start writing but today I went straight from the article to my blog before my brain loses the content I want to write about and here I am.)

First I found this TINY article that tells me that the FDA has approved a drug to treat bone loss in cancer patients - specifically women who are being treated with an aromatase inhibitor after breast cancer and men with non-metastatic prostate cancer receiving hormone therapy. Obviously I am not in the second group but the first. And I am having bone loss issues. I will talk to my doctor about this one after my next bone scan in the spring. Basically my bone density is down and in addition to being on an AI, I have a strong family history of osteoporosis. I have already talked to my doctor about next steps in bone density if it continues to go down.

But I digress this tiny article didn't not tell me enough and it referred me to the Prolia website which tells me nothing but offers a lot of scary side effects. So I did a little more research with Dr. Google which led me to a little more information on WebMD that tells me it is an injection every six months and has common side effects of low blood calcium, joint pain, and back pain, in case I didn't have enough of those already. But that is always another tiny article. I need to talk to my oncologist to get the real information.