Thyroid cancer and general question

[Christine]

I would like to thank all posters who offered insight and ideas and for not bashing me because of my question. I will ask my sister if she had gone to an oncologist? and why they havent had the thyroid removed. I would think they would remove it since she has had such a problem with it for so long plus having a cancer scare already. Thank you again.

Just an FYI--oncologists generally don't treat thyroid cancer. You would want to see an endocrinologist as well as a head/neck or ENT surgeon.

 

[almburr]

Just an FYI--oncologists generally don't treat thyroid cancer. You would want to see an endocrinologist as well as a head/neck or ENT surgeon.[/QUOTE

Ok thanks I will suggest that to her.

 

[Tricia1972]

I assuming that Bumber meant that the tumor was a benign brain tumor (i.e. not cancer at all).

That's part of the reason that she really needs to elaborate when making such wild claims.

I researched a lot when my sister was diagnosed, and what I found was that if it's a brain tumor it's considered malignant. Grading happens on growth rate. A tumor poised to kill a man in 6 months without treatment is not a non-aggressive 'relatively benign' mass.

Like I said, it's why she should provide more information before posting.

 

[Tricia1972]

Ok thanks I will suggest that to her.

I would bet that your additional research is a real comfort to your sister. Being diagnosed is overwhelming and you can read a lot of 'bad news' on the internet. Having an advocate weed through that is a comfort.

 

[almburr]

radiation treatments are only used after the thyroid has been removed and this is used only where there were Stage lll or Stage lV cancers. Your sister needs to have the endo refer her to a surgeon and oncologist ASAP!
Who did the fine needle biopsy and what type and stage of cancer was diagnosed? Right now the most important thing is to get the proper treatment for your sister.....and yes, Cancer is Cancer....

Her doctor did the biopsy and the endocrinologist looked at it. From what I have been reading in the posts she should have the thyroid removed.

 

[Christine]

I researched a lot when my sister was diagnosed, and what I found was that if it's a brain tumor it's considered malignant. Grading happens on growth rate. A tumor poised to kill a man in 6 months without treatment is not a non-aggressive 'relatively benign' mass.

Interesting. My husband's friend died of non-malignant brain tumors. The first one he survived with. Then it came back and they just couldn't operate. But they kept saying that they were not cancer.

 

[Tricia1972]

Just found this link, it is a source for what is removed when with the thyroid. Not sure if you've seen it

http://www.endocrineweb.com/surthyroid.html

 

[Tricia1972]

Interesting. My husband's friend died of non-malignant brain tumors. The first one he survived with. Then it came back and they just couldn't operate. But they kept saying that they were not cancer.

Perhaps it's a newer thing, considering all of them malignant

All of my research in 2008 indicated that they are all malignant, but they can be relatively benign or almost benign depending on how fast they are growing. But all tumors are treated with surgery, radiation, or chemo. (A combination of some or all of these depending on the tumor)

We were hoping for a slow growing mass when my sister was diagnosed, but we struck out with a more aggressive tumor.

Brain tumors are more usually referred to as malignant versus cancer. Partly because, interestingly, they rarely metastasize outside of the brain.

 

[Christine]

Perhaps it's a newer thing, considering all of them malignant

Probably. This was about 20 years ago. More recently, I had a coworker diagnosed with a frontal type brain tumor that was pressing on the back of his eye. It was a brain tumor and not an optical tumor. They said it was non-malignant. He did have surgery to have it removed and has been fine. That was about 8 years ago. It is very likely that they have indeed changed the terminology because there really is no brain tumor that *shouldn't* be malignant. I just keep viewing it from a pathology (cellular) level. The actually cells are non-malignant but that doesn't mean it isn't as lethal.

 

[cabanafrau]

DH had a tumor in his frontal lobe in his 20s. He refused western medical care (and had to hire an attorney to keep the diagnosing doctors off his case when they were threatening him with being committed and having care despite his wishes). This tumor was not malignant, but it was growing so fast "they" gave him 6 months to live without their treatment. He refused b/c they said surgery wasn't possible, and it was only radiation being shot at the frontal lobe...the side effects that were possible, he felt, were worse than death.

He went on a beyond-macrobiotic diet, where he coudln't even have fish (usually a part of macro) b/c the fish readily available in the States are so toxin-filled, he juiced, he did supplements, he did hyperbaric chamber treatments. He paid out of pocket for it all b/c they aren't covered by insurance even now, and it was crazy-hard (he had to move back in with his mom) b/c he was making under 30K at the time while in the Seattle area.

He also paid for MRIs throughout, also paid for OOP, and within 6 months it was responding. Within a year, I believe, it was gone.

Diet CAN have affects even on scary "cells growing and not stopping and creating tumors" problems.

I remember reading this article when it came out. 1/3! From the article, "The genes have been there for thousands of years, but if cancer rates are changing in a lifetime, that doesn't have much to do with genes," said a Harvard researcher. As stated in the article, the problem is EXACTLY what happened here. People hear this, and feel BLAMED. Instead of feeling EMPOWERED. That they can affect change in their internal environments. Make a chance. Do something.


I believe that someone with a scary diagnosis should definitely do everything to make their bodies not have to fight the tumors AND have to deal with junk being put into them. So yes, I think your sister should be helping her body...not hindering it. She could feel empowered by such a thing...no need to feel guilty.




By the way, if she has her thyroid out, tell her to get a careful surgeon. Friend of mine had that surgery, the guy nicked her parathyroid and had to take THAT out, too. It's VERY VERY VERY difficult for her to manage her weight now, and she has to take something like 30 calcium pills a day, last she told me, because of not having either one of them....

Are you saying that hyperbaric chamber treatments are not covered by insurance? If so, that is not always the case. My father received weekly treatments for several months, which were indeed covered by his health insurance.

 

[Tricia1972]

Probably. This was about 20 years ago. More recently, I had a coworker diagnosed with a frontal type brain tumor that was pressing on the back of his eye. It was a brain tumor and not an optical tumor. They said it was non-malignant. He did have surgery to have it removed and has been fine. That was about 8 years ago. It is very likely that they have indeed changed the terminology because there really is no brain tumor that *shouldn't* be malignant. I just keep viewing it from a pathology (cellular) level. The actually cells are non-malignant but that doesn't mean it isn't as lethal.

Thank you for stating it so well, and this is ringing a bell for me based on my old research.

The grades, I am positive, are based on rate of growth. A grade 1 isn't good news, but it's not growing fast so isn't much of a danger. It has more time to respond to treatment and isn't aggressive. A grade 4 is worse news, because it's growing fast and poses a very real, immediate, danger due to its aggressiveness.

In Bumbershoot's case, where her husband was told he had 6 months without treatment, I would guess that it was a high grade tumor that was growing very fast.

 

[crashbb]

Thank you for stating it so well, and this is ringing a bell for me based on my old research.

The grades, I am positive, are based on rate of growth. A grade 1 isn't good news, but it's not growing fast so isn't much of a danger. It has more time to respond to treatment and isn't aggressive. A grade 4 is worse news, because it's growing fast and poses a very real, immediate, danger due to its aggressiveness.

In Bumbershoot's case, where her husband was told he had 6 months without treatment, I would guess that it was a high grade tumor that was growing very fast.

Okay, now I understand. I, like Christine, was thinking of malignant vs. benign at the cellular level, while you were using it more in terms of deadly versus not deadly.

Makes sense.

 

[mrsklamc]

I'm not a fan of people who are sue-happy but if your sister really has thyroid cancer this seriously sounds like malpractice to me. She needs her thyroid removed, and to ingest radioactive iodine, and then she needs to see an endocrinologist for follow up care.

I told people it wasn't 'real' cancer too. I wasn't in denial, I just meant, I don't have to lose my hair, and I'm not going to die- the stuff people (or at least me) thought of when they/I heard the word 'cancer.'

As for your original question- 1) she doesn't need to hear stuff like that right now. It didn't contribute to her cancer, and the last thing she needs right now is to be told she isn't being healthy enough. 2) This isn't the time to make those kind of changes unless they are coming from her own internal desire to do so. Two weeks out, you are still doing whatever you have to do to deal with the fact that you have cancer.

 

[Christine]

I'm not a fan of people who are sue-happy but if your sister really has thyroid cancer this seriously sounds like malpractice to me. [/I]

I agree with this.

Regular, garden-variety thyroid cancer is VERY treatable with a high cure rate which is why they call it the "good" cancer. However, in my experience with support groups and networking with other thyroid cancer patients, I've run across a few that had the "good" type of thyroid cancer, yet were in trouble. In probably 95% of those cases, the patient was not optimally treated in the beginning. Sometimes they didn't have surgery and just had radioactive iodine, sometimes that had only part of their gland removed. Sometimes all of the gland removed and then never any follow up. Five years down the road they are in serious trouble and cannot get rid of the thyroid cancer. Even at that point, it still doesn't kill them but they spend a TON of time trying to get it under control and, for many, it becomes a lifelong thing that they live with.

Your sister is heading down that road with the type of treatment she is getting. External beam radiation (weekly radiation) is reserved for thyroid cancer patients who have the aggressive kind and cannot be cured with surgery or radioactive iodine.

 

[gonzo76]

DH had a tumor in his frontal lobe in his 20s. He refused western medical care (and had to hire an attorney to keep the diagnosing doctors off his case when they were threatening him with being committed and having care despite his wishes). This tumor was not malignant, but it was growing so fast "they" gave him 6 months to live without their treatment. He refused b/c they said surgery wasn't possible, and it was only radiation being shot at the frontal lobe...the side effects that were possible, he felt, were worse than death.

He went on a beyond-macrobiotic diet, where he coudln't even have fish (usually a part of macro) b/c the fish readily available in the States are so toxin-filled, he juiced, he did supplements, he did hyperbaric chamber treatments. He paid out of pocket for it all b/c they aren't covered by insurance even now, and it was crazy-hard (he had to move back in with his mom) b/c he was making under 30K at the time while in the Seattle area.

He also paid for MRIs throughout, also paid for OOP, and within 6 months it was responding. Within a year, I believe, it was gone.

Diet CAN have affects even on scary "cells growing and not stopping and creating tumors" problems.

I remember reading this article when it came out. 1/3! From the article, "The genes have been there for thousands of years, but if cancer rates are changing in a lifetime, that doesn't have much to do with genes," said a Harvard researcher. As stated in the article, the problem is EXACTLY what happened here. People hear this, and feel BLAMED. Instead of feeling EMPOWERED. That they can affect change in their internal environments. Make a chance. Do something.


I believe that someone with a scary diagnosis should definitely do everything to make their bodies not have to fight the tumors AND have to deal with junk being put into them. So yes, I think your sister should be helping her body...not hindering it. She could feel empowered by such a thing...no need to feel guilty.




By the way, if she has her thyroid out, tell her to get a careful surgeon. Friend of mine had that surgery, the guy nicked her parathyroid and had to take THAT out, too. It's VERY VERY VERY difficult for her to manage her weight now, and she has to take something like 30 calcium pills a day, last she told me, because of not having either one of them....

When are you going to stop posting this crap? Can you please tell us the miraculous diet? I would really love to know as both my parents have Cancer. My mom with Stage 3 Ovarian and dad with Stage 1 Prostate. The problem is when you post this nonsense and someone calls you on the carpet,you never respond. I get you like hoslistic medicine but what you preach sometimes could get someone hurt if they took your advice.

OP, I would definitly tell her to have a second opinion. You should always get one when dealing with Cancer.

 

[almburr]

I was doing some reading on a cancer site. It said that radiation therapy can cause hair loss, darkening of skin, vomiting, nose bleeds, skin to die off, and other things.

Has anyone experienced any of these things when they were on radiation treatments?

 

[Christine]

I was doing some reading on a cancer site. It said that radiation therapy can cause hair loss, darkening of skin, vomiting, nose bleeds, skin to die off, and other things.

Has anyone experienced any of these things when they were on radiation treatments?

Well, I've never had external radiation for thyroid cancer but I know others that had it for breast cancer and throat cancer. Yes you *can* lose your hair but often you don't unless the radiation is directed in the head area. The radiation does darken the skin and it can peel. I think the vomiting and nose bleeds can happen but it probably depends on how much and where you are getting the radiation.

 

[mrsklamc]

I was doing some reading on a cancer site. It said that radiation therapy can cause hair loss, darkening of skin, vomiting, nose bleeds, skin to die off, and other things.

Has anyone experienced any of these things when they were on radiation treatments?

It sounds like you might be doubting your sister's story?

 

[almburr]

Well, I've never had external radiation for thyroid cancer but I know others that had it for breast cancer and throat cancer. Yes you *can* lose your hair but often you don't unless the radiation is directed in the head area. The radiation does darken the skin and it can peel. I think the vomiting and nose bleeds can happen but it probably depends on how much and where you are getting the radiation.

I just wondered. I remember when my grand mother had skin cancer she would get a lot of nose bleed.

Also my sister hasnt been the healthiest person, always sick. Plus she has gal-stones and kidney stones on top of all this. Her bone density is that of a 80yr old with ostioporsis(sp).

 

[april5675]

I'm a thyroid cancer survior too!! I was just deemed CURED last week after 7 years. Mine spread to lymph nodes in my neck.....so it is very much a serious cancer! You sister needs to get to an endo doctor ASAP!! She very much needs to have Radioactive Iodine treatment!! then possibly a PET scan to make sure that it has not spread, because thyroid cancer spreads to the brain and lungs!!! It may be a very treatable cancer, but there are patients who do not respond to treatment.