DX- thyroid cancer

DebE13 · Post by **DebE13** » Fri Aug 16, 2013 9:01 am

At the docs office To get my results of the fine needle aspiration i had done. Two of the three nodules i had tested are malignant. Waiting to see the surgeon now. Didnt expect this. I asked if this would help my long list of other crappy symptoms and was told the cancer generally doesnt cause those symptoms but could not be guaranteed either way. Part or all of my thyroid needs to be removed.

Anyone with any expierence on this?

DebE13 · Post by **DebE13** » Fri Aug 16, 2013 9:02 am

Oh, its the papillary kind

JLH · Post by **JLH** » Fri Aug 16, 2013 9:09 am

So sorry to hear your news.

My first cousin had thyroid cancer but seems to be just fine now. Sorry, I do not have any details to share.

I am a breast cancer survivor since 1999. I hope to be a LC survivor.......

DebE13 · Post by **DebE13** » Fri Aug 16, 2013 9:19 am

I was told it was the "best" cancer to have if one had to choose one to treat. My endo has been great. Right now it just seems like one more thing to deal with and it just makes me very irrirated. Its going to be more upsetting to my family than me. It makes me want to drive over to my old doctor and shove the pathology reports in his face. Years.... Many many years ive been asking about my thyroid. Of course maybe it wasnt there at that time but i am feeling down right pissy right now.

Thanks for your words of encouragement though, no choice but to deal with it. I was told i didnt have to rush, could wait six months if i wanted but i want to get my son moved off to college at the end of the month and get this done with. Hopefully i will see some improvements. I am concerned though that things may get worse and my MC progress will backtrack

Post by **tex** » Fri Aug 16, 2013 9:57 am

Hi DebE,

That's a bummer for sure, but as far as I am aware, that's a low-risk surgery, and while the antibiotics and other drugs, stress, etc., associated with the surgery may cause a temporary setback in MC symptoms, there's also a possibility that it might trigger a remission.

I have a hunch that your doctor may be wrong about the surgery not helping to resolve your other symptoms. They probably don't have any experience with treating patients who also have MC. Having MC puts us in a special category where many issues don't work the same as they do for non-MCers. I'm optimistic that this will make life a lot easier for you.

Good luck with dealing with this, and please keep us posted.

Tex

DebE13 · Post by **DebE13** » Fri Aug 16, 2013 10:25 am

Thanks Tex, i think my endo wanted to be cautious and not give me any false hopes. I just spoke with the surgeon and he guaranteed me there is something up with all my symtoms and not to give up because its not in my head. He was not promising anything but said it is a possibility that some of my symptoms could improve. He recommended having my whole thyroid removed and that i would need to be on meds for life- it was the synthetic kind (cant think of the name)... Is that a problem? Should i bring up Alternates? He slso said a calcium supplement - tums. I am getting ahead of myself but i dont think tums would be a good idea.

Also, you mentioned antiobiotics. Is there a particular kind that is more MC friendly?

Pain killers ? Not sure if they are offered or i will need any but any suggestions? Tylenol has never been all that effective for me.

To a point its my choice if i want to try the partial lobe removal or the whole thing. Im leaning towards the complete removal since i already have multiple nodules. Any feedback is appreciated. I dont like the idea of removing anything.

Kari · Post by **Kari** » Fri Aug 16, 2013 10:52 am

Wow Deb - sorry to hear that. As you probably know from reading here, many of us are dealing with thyroid issues. I was diagnosed with hyper thyroid in 1985 and opted for the radio iodine treatment, which shrinks the thyroid. I was fine for a while, but then it went the other way and became hypo thyroid. I was prescribed synthroid and have been on it ever since, and expect to be on it for the rest of my life.

Back in NYC I had a friend who had thyroid cancer (not sure if she had partial or full removal of the gland). She recovered fully and had no side effects. It seems that thyroid cancer is localized and easy to remove, and being on thyroid hormone replacement for the rest of your life should not be a problem. I wish you the best of luck with this. Hope Tex is right that getting this settled will help ease some of your other symptoms

.

Love,
Kari

DebE13 · Post by **DebE13** » Fri Aug 16, 2013 10:59 am

Thanks Kari, it seems like there could be a lot worse things.

As a side note, the endo explained one of the T4 tests that was done. To get the results they spray the blood in a cylinder and set it in fire. The color of the flame gives them the results. I thought that was pretty cool. Of course, those tests are only done in a few labs.

Zizzle · Post by **Zizzle** » Fri Aug 16, 2013 11:41 am

Deb,
So sorry about the diagnosis. My MIL's sister had thyroid cancer decades ago and is fine. Some cancers trigger autoimmune conditions in people (Dermatomyositis is a well-known cancer-caused autoimmune disease -- and it's closely related to LC, in that it is mediated by wayward lymphocytes). Often when the cancerous cells are removed, the disease goes into remission...forever. The other advantage of having your thyroid removed is that you don't have to keep recalibrating your thyroid hormone dosages based on the ups and downs of a diseased thyroid. My MIL has chronic hives related to her Hashimoto's Thyroiditis. In extreme cases, thyroid removal has completely eliminated the hive problem, but she's not ready for that step yet.

Good luck with the surgery.

Post by **tex** » Fri Aug 16, 2013 1:18 pm

He recommended having my whole thyroid removed and that i would need to be on meds for life- it was the synthetic kind (cant think of the name)... Is that a problem? Should i bring up Alternates?

He probably mentioned Synthroid (levothyroxine sodium). I don't consider it to be a problem unless your body is unable to effectively convert the T4 in the supplement into T3 (the active form), so that your cells can use it. Your Endo can always work with you to custom-taylor a treatment in case the T4 alone doesn't resolve your symptoms.

He slso said a calcium supplement - tums. I am getting ahead of myself but i dont think tums would be a good idea.

When all or part of the thyroid is removed, the trauma will affect the parathyroid glands, since they are located so close to the thyroid, and their blood supply may be affected. The parathyroids regulate calcium levels in the blood, so your calcium blood level will have to be monitored for a while to make sure that it is in a safe range. The blood calcium level is more likely to be suppressed when a larger percentage of the thyroid (or the entire gland) is removed. If you need a calcium supplement for a while, I see no reason why tums wouldn't work. They make a good calcium supplement. They're just calcium carbonate. Each regular tablet contains 500 mg of calcium carbonate, which is equivalent to 200 mg of elemental calcium. The Ultra Strength Tums contain twice as much calcium.

Also, you mentioned antiobiotics. Is there a particular kind that is more MC friendly?

The class of antibiotics the least likely to trigger an MC reaction is the fluoroquinolones, including Ciprofloxacin. Most of us have found that if we're in a flare, Cipro will actually bring temporary remission from D, as long as we're taking it. The fluoroquinolones are broad-spectrum antibiotics, but I have no idea whether your surgeon would approve the use of Cipro or not. I get the impression that they often use a combination of antibiotics (or rotate using several different types), just to make sure that they don't miss any resistant bacteria. If he were to be comfortable using only Cipro, that should alleviate any concerns about the antibiotic triggering D, but that would probably be hoping for too much, and he may not be willing to restrict his choices so severely.

Pain killers ? Not sure if they are offered or i will need any but any suggestions? Tylenol has never been all that effective for me.

Tramadol is generally safe, and in the hospital they will use opiate-based painkillers, which are generally safe for MCers. In fact, narcotics are notorious for drastically reducing gut motility. In the past, we have had more than one member who used (inappropriately, IMO) narcotic painkillers to reduce their motility as a means for controlling their D. It works, but that's kind of a dangerous game, because it can result in a life-threatening impaction condition.

To a point its my choice if i want to try the partial lobe removal or the whole thing. Im leaning towards the complete removal since i already have multiple nodules. Any feedback is appreciated. I dont like the idea of removing anything.

Personally, I believe I would choose that option also, since it may preempt future problems, and you will surely have to take a thyroid supplement for life, anyway (like many of the rest of us here).

Tex

Zizzle · Post by **Zizzle** » Fri Aug 16, 2013 2:42 pm

Tex,
I know you are a fan of Cipro and other fluoroquinolone antibiotics, but I am now scared to death of them. A friend of mine is suffering from severe CNS damage and muscle and tendon tears all over her body from taking Levaquin 2.5 years ago! It has totally destroyed her health, and there are countless people just like her. I would only use that class of antibiotics as a last resort. The government just released an advisory about them, but it's not enough. The problem is that the CNS and tendon damage can happen MONTHS after the drug is taken, and it continues to reappear in flares for the rest of your life, with no known treatment. Check these out:

Personal testimonials from countless victims:

https://www.facebook.com/pages/The-Fluo ... 2505773463

Latest FDA advisory:
http://www.fda.gov/Drugs/DrugSafety/ucm365050.htm

The U.S. Food and Drug Administration (FDA) has required the drug labels and Medication Guides for all fluoroquinolone antibacterial drugs be updated to better describe the serious side effect of peripheral neuropathy. This serious nerve damage potentially caused by fluoroquinolones (see Table for a list) may occur soon after these drugs are taken and may be permanent.

The risk of peripheral neuropathy occurs only with fluoroquinolones that are taken by mouth or by injection. Approved fluoroquinolone drugs include levofloxacin (Levaquin), ciprofloxacin (Cipro), moxifloxacin (Avelox), norfloxacin (Noroxin), ofloxacin (Floxin), and gemifloxacin (Factive). The topical formulations of fluoroquinolones, applied to the ears or eyes, are not known to be associated with this risk.

If a patient develops symptoms of peripheral neuropathy, the fluoroquinolone should be stopped, and the patient should be switched to another, non-fluoroquinolone antibacterial drug, unless the benefit of continued treatment with a fluoroquinolone outweighs the risk. Peripheral neuropathy is a nerve disorder occurring in the arms or legs. Symptoms include pain, burning, tingling, numbness, weakness, or a change in sensation to light touch, pain or temperature, or the sense of body position. It can occur at any time during treatment with fluoroquinolones and can last for months to years after the drug is stopped or be permanent. Patients using fluoroquinolones who develop any symptoms of peripheral neuropathy should tell their health care professionals right away.

http://articles.mercola.com/sites/artic ... fects.aspx

Tendon rupture, retinal detachment, hallucinations, personality changes, kidney failure, brain fog, psychosis and loss of memory have all been reported following use of fluoroquinolones.

Here's a petition to ask the FDA for a Black Box Warning:
http://www.change.org/petitions/food-an ... cns-damage

And multiple other websites...

www.facebook.com/FluoroquinoloneToxicity
www.saferpills.org

Apparently these drugs attack our mitochondria, and it's all downhill from there!

Collins' team had already discovered that antibiotics that kill bacteria do so by triggering oxidative stress in the bacteria.
They wondered whether antibiotics caused side effects by triggering oxidative stress in the mitochondria, a bacterium-like organelle that supplies human cells with energy.

They found that all of these drugs were safe after six hours of treatment, but longer-term treatment of about four days caused the mitochondria to malfunction.
Kalghatgi and Spina then did a series of biochemical tests, which showed that the same three antibiotics damaged the DNA, proteins and lipids of cultured human cells - exactly what one would expect from oxidative stress.

http://www.newstrackindia.com/newsdetai ... otics.html

dfpowell · Post by **dfpowell** » Fri Aug 16, 2013 2:57 pm

Zizzle,

You have some good data there, my personal reaction was nerve tingling throughout my body within hours of the first/last dose. But I know others who have used it successfully.

brandy · Post by **brandy** » Fri Aug 16, 2013 3:02 pm

Hi Deb,

Wow, what a day! It sounds like you are in good hands with your pcp, endo, and surgeon. Best wishes and keep us posted on your surgery.

FWIW my girlfriend who just had the lumpectomy was given probiotics to take along with the antibiotics, perhaps something to ask about.

Brandy

DebE13 · Post by **DebE13** » Fri Aug 16, 2013 4:41 pm

Thanks for the wealth of information....it puts my mind at ease to have some idea ofowhatiican suggest to make this more MC friendly. It is unnerving to bumble around hoping for he best. You are all my security blanket and the first to which i have shared my news. I have a call in to the appointment coordinator to get this out of the way

Thank you all so much!

Vandolyn · Post by **Vandolyn** » Fri Aug 16, 2013 4:42 pm

Deb,

I am so sorry to read about your thyroid cancer. My Mother had one-half of her thyroid removed 40 years ago because of cancer. She took thyroid medicine everyday. She did great. Four years later, she was killed in an accident. My family would say to you that thyroid surgery is safer than driving down the highway for sure.

As for the antibiotic, I am allergic to many of them. Cipro and Levaquin are two I can take with no issues. I am taking Levaquin now for a bladder infection. My doctor has written a book called "The Doctor of No Medicine." She never writes a prescription without much conversation. She thinks Cipro and Levaquin are safe drugs for most. The warning label from the drugstore is a bit scary for sure!!

God Bless You in Your Path to Recovery.

Vandolyn