How will I die with Untreated Thyroid Cancer-Steps

[bluestarmom187]

I have a 4.8cm goiter on the right side of my thyroid along with a few others (1.9CM) . The FNA results were suspicious for Foculliure Neoplasm(sp?) . My doctor and another doctor says that my only option is to cut it out . Well, for me that is not an option. I do not have medical insurance and this has already put me in dept for $3200.00. I refuse to put my family in debt over this. My question is this. I have already started having headaches all the time, I get sick to my stomach, and this goiter just keeps growing. It has grown ½ inch in the last month which make me feel like someone is trying to strangle me but just not enough pressure to do the job.  Will the goiter itself kill me or what? I just want to know how this will play out.  

[Dogdancing]

Just so you know, Bluestarmom when ahead with treatment. She choose to put herself first.

[Barb135]

This is a very old thread and most of the previous posters are no longer active on the forum.  

Hopefully, you've read all the comments above.  I'm not sure of your relationship with you significant other, but I can't imagine he would be so bitter for you spending his money to get well.  Have you discussed this with him?  As has been stated before, you can't put a price on life.

If you aren't working and don't have insurance, there are programs available to get the treatment you need, if you can't afford it.

If you truly decide on no treatment, the course of the disease has pretty much been laid out in comments above.  Just be aware that keeping you comfortable may be almost as expensive as treating the cancer; not to mention that even though you think no one wants you, watching you die will be difficult for your family and significant other.  You won't be the only one involved.

You should find someone to talk with, such as a clergy person, psychologist, doctor, etc who can help you with this.  You will need to make sure you have a living will, with a person (health care surrogate) designated who can/will carry out your wishes.  I was the designated health care surrogate for my elderly aunt who had breast cancer; carrying out those duties was one of the most difficult things I've ever had to do in my entire life. I would never put that burden on anyone, any sooner than I have to.

[suzy102608]

I have just been diagnosed and feel your pain. We are also poor. I don't have anyone here who really wants me here anyway.  I already have been a burden on my family long enough because of damaged nerves to my legs.  On top of that my significant other will really be bitter if I spent that much more of his money on it.  I have decided I don't want treatment and I also want to know what the course of the disease is going to be and how it will kill me so I can prepare myself for it.

[stella5349]

Lise. I'm sorry your going through all this. Thyroid cancer (for the C-word) is one of the higher success rated Cancers to manage.  I see you have the type of cancer cell listed but I'm not clear for thyroid on if the finding was pap cancer or follicular?

I know you feel overwhelmed.... and this happens to be an old post. Would you be able to post a thread (a new thread) under your name and list a histroy down to get members to comment more?

[lia3649]

hi my name is lise and i have thyroid cancer and i had it removed it i had a total removal but now in april of ths years it came back and they done surgery and removed all the lymphonds in my neck but when they got my results back they told me i have poorly defferentialed squamous thyroid carconmia hope i spelled that right. i just finished chemo and radiation treatments but now they want to do more chemo. My question is if i dont do anything at all what r my chances and how long will this last before i die. I'm only 49  but im tired of going threw this if its just keeps coming back they already told me that i cant have any more radiation treatments the only thing left to do is chemo. i told my last treatment in june but im still loseing weight and my hair is comming out again is this normal?

[AlbanyT5]

Hi!  Finally someone I can relate to!  I have Graves Disease, and an enlarged thyroid with (so far) non-cancerous nodules.  I took methimazole, but then they wanted me to take the radioactive iodine.  I said "no" primarily because that means I would be taking synthroid (and who knows what else) forever.  So I quit taking everything.  That was over a year ago.  I believe the treatments (radiation) are just not worth the risk/damage they cause.  In a hundred years, they will look at radioactive iodine like we look baack at blood letting and arsenic treatments.

Like you, my kids are grown - one each in the Army and another in the Marines, both out now.  I'm certainly not destitute, but I don't intend to become that way following the advice of doctors. I believe that not smoking, eating healthy organic foods, not drinking, getting rest, and excercizing as much as my tachycardia allows is the best thing I could do.
  
I've just met too many doctors that believe they are gods; I believe most medications cause as much damage as they do good (karmic principle); I believe that most of these medications exist to enrich drug companies, and I will not be a slave to the mass hysteria that we should try to live forever.  Never experienceing discomfort....

I'm not ignorant; I graduated from several universities.  I'm not poor, I'm actually rather well off.  In fact, I've got paid medical care for life.  I've seen and been with relatives when they were dying of cancer.  I think our medical community increases pain, prolongs misery, drains families of they resources, creates false hope, and in the end, don't really help.  Old people still die.  (Really!  they do!)  I want my chance at death with dignity, and maybe hospice care when the time comes.  I believe that Americans in general get way to wrapped up in themselves and their healthcare.... thinking they have the right to live forever and drain family and community resources (money, education, construction, research) to prolong lives that have served their purpose....  

For young people, maybe that's another issue, but for those of us whose children are grown, we've done our thing.  It's time to get out of the way when the times comes and leave the stage gracefully.  Without bothering everybody.

I'm with you bluestarmon187, take care.

[ChitChatNine]

I was diagnosed with Melanoma 6 very short months after my Thyroid Cancer.  I also have had atypical colon polyp removed and I suffer from a kidney anomoly that causes me to contantly make kidney stones called MSK .. I also suffer from documented gallstones.  I share this in reply to your history .. nothing stands out in your history or FNA that sounds like you don't have an EXCELLENT chance of moving on with your life 100% cancer free after treatment!   I don't understand how a $ value can even play into a decision for life?  I understand, don't get me wrong, but isn't life worth any amount of money?

I am a very strong believer that we are very strong .. all of us here on thryoid .. we may be on different levels of strength but we are never, ever weak.

Yes, we all die, but every day we breath and wake up to the morning air and sun, is a gift ..... there are people out there who will and can help you, if you let them.

Please please think this through very carefully.

Dr. Lupo's site is very popular as he's extremely good .. He helped me make my decision to have my thyroid surgery and you know what .. it may have saved my life vs. the alternatives.

[kitty9309]

I watched my brother-in-law die of head and neck cancer.
It was not pretty.
My sister is in serious debt and narrowly avoided filing bankruptcy.
We would all rather have him back and take on more debt just to share life with him.

Everyone above has said so many great things to help you find help. Don't give up like this. You are way too young. I am about to start treatment for Lyme disease that will be very expensive due to the fact that we have no prescription insurance and our insurance has a high deductable. We are willing to go into debt for this and it isn't even a fatal disease (usually). We are doing it to get my quality of life back. So should you.

[pep88]

Since I found out you're in Washington (you don't say where...and I live in Seattle), I googled "indigent care - Seattle", and this is the link I found.  seattle.gov/html/citizen/pacificpda.htm  Maybe this is not close for you but there are wa.gov sites too.  Use your fingers, you obviously have access to a computer...  There is help out there.  DON'T GIVE UP!

[whittie918]

I have a older friend who has thyroid cancer who can not get treatment because of life long  blood thinner use.  The surgery will kill him.  He was told he has about 10 good symptom free years left.  He was perfectly content with this as he is in his late 70's and was glad at least to know what it was.

It sounds like you are not so sure they will cure you after all this.  My cancer was papillary but Follicular variant (more aggressive than ordinary papillary).  Even so they managed to completely cure me in the first go round.  My whole thyroid gland was engorged with cancer and the nodule tho small was attached to my trachea.  The surgery to save my life, only $3,000.  The RAI pill itself was not that expensive either.  The WBS was a few thousand dollars though.  Maybe you can put this part off and just go with labs to determine the progress?

[mitch021]

Hello... My name is Mitch but I am in fact a girl. I am going to post some information below, but I need to say some things to you first.

I understand why you are afraid. I actually lost my insurance just before I found I had cancer so I was "pre-existing" making it impossible to get insurance. Finally someone led me to state aided medical care (Acces). I don't know if you are eligible or not or what your state offers. I was a single mother. I had to lose income to be eligible. I don't know anything about your financial status but being without insurance indicates to me that you do not have alot of money. Maybe you could move in with a friend, have a church or community of friends that would do a fund raiser. I believe there are ways to handle this.

You say it is suspected that  you have Follicular cancer. Your goiter is 4.8cm. I have to point out that while your goiter is 4.8, "if" you have cancer, the part of the goiter that is malignant could be much smaller. I had a large goiter but the cancer was of a minimal size. It is not like having a tumor somewhere else. A goiter is caused by the thyroid hormone. Many people have goiters that have no cancer. Thyroid cancer can be very curable. You mustn't wait however. It just makes sense to get working on finding a solution.

I am not going to talk about death because you've not told me anything that sounds bleak as of yet. The real sadness would not be your family having financial distress because of your care, but rather having a parent that thought finances were so important that she put herself second. It gives your family a message that money is happiness, not love and family, and it would also say you do not value yourself or them. I understand why this is confusing for you right now. YOu are scared, but trust me, if they lost you because of your fear of wrecking them financially, they would never forgive themselves or you.

Get yourself in shape. Eat right. Read and listen to positive things. Find out what life message is in this for you.
The fact that you would rather die then possibly burden your family with financial stresses tells me you most definately have a life message in this.

Don't take my message the wrong way. I had all the same questions and concerns you did. It was however a learning process.

As far as surgery. Don't be afraid of it. It really is not so bad. In fact, after they remove the tyroid, you will probably
feel better then you have in years. A thyroid out of balance can cause all sorts of physical, emotional and phychological problems. I spent a great deal of time crying, confused, lack of memory, tired, and then wound up, etc. I literally felt like I was going crazy. I kept calling my sister to tell her something was wrong but I just couldn't figure it out. It had nothing to do with knowing I had cancer. It was much before I knew I had it. It was about my thyroid being out of wack. Also on a cellular level my body was a mess trying to fight it. The thyroid affects everything in your system.

Since my surgery I have had people tell me they had hypothyroidism that Dr's had been trying to balance for years with medication but it kept fluctuating, so finally they had their Dr's just take the thyroid out and now they felt better then they had in years. So you see, this may be a blessing. I might reccommend that that you talk to your Dr. about doing his best to leave in your Parathyroid. Ask him about it.

Even if you have something advanced, don't stop there. Have chemo, (ususally for thyroid it is radio-active iodine (a breeze to get through)), radiation and whatever they reccommend. But also pull up information on "Intraveneous Vitamin C". Put it in Google Advanced search.

[bluestarmom187]

Thank you for all the feedback. I have been reading them and trying to look at from each point of view. Just to answer a few of the questions;

1. My family does know what it is going on. Although they respect my choice they are also concerned about it. I think that so many people are so scarred with the thought of death yet I am not sure why. To me, people die ever day without warning. What a blessing to know ahead of time.

2. I live in WA State where they just past the "Death with Dignity Law". So I plan to look into this ahead of time.

3. I have looked at some clinical trials at WA State University but they said that these trials were only for people who have gone through surgey and do not respond to Radiation treatment.

4. As far as the cancer issues I had before. When I was around eight I had to have a cancerous mole along with three inches around it removed from my lower back. Then when I was 18 I had cervic cancer.

I did not know about the disablity comment posted above. I will check into this option. I worked all of my life and only stopped working in 2003 to stay at home while my then teenage son started high school. He was accepted at Jesuit High School which was a 45 minute drive from our home at the time so I needed to drive him.

I had thought when I posted my question that it was in the area where doctors respond. I found that section today but they had already reached the limit. I do appriciate everyone's thoughts and suggestions.

[Smilerdeb]

I am of the opinion that you are really 'fighting yourself' and are struggling thinking you are doing the right thing.
But have you ever considered just how your Husband and Family will feel if you die?
Put yourself in their shoes.
Ask yourself how you would feel if your Husband or Son had the same attitude as you do....that you dont want to be a financial burden?
Life is too short as it is and you have a choice and chance of a cure.
A lot of people dont.

My Husband had the same way of thinking as you and my kids and myself lost him 17 years ago.
Not to Thyroid Cancer but to another illness where he took his own life.
I still picture his face to this day.
Is that what you want for your Husband and Family?
Please go to the hospital and get treatment and no, you cant put a price on human life.
It is Priceless.

[Dnmh]

Please do not feel ashamed or guilty getting "charity" from your state. Your husband is working so he's already paying for your care via his income taxes. Your son is paying into it as well. You say you are not working now, but if you ever have, then you paid into it as well. Millions of people pay into these "funds" which tend to be abused by people who refuse to work, but they are there for every one of us. Any state funded hospital has payment options too - sometimes free, sometimes a sliding scale and they do work with you. You can call either a Social Worker or Financial Counselor. PLEASE don't look at it as charity - like I said - your husband already pays for it any way you look at it.

I live in Ohio, had great insurance for 8 years. Lost my job along with that great insurance. My husband got a job (one of us stays home to raise our grand-daughter) and the insurance premiums were way too high so we have no insurance.
I am currently recieving 100% free coverage for 3 months at a time from the Cleveland Clinic Foundation. I will be getting my second ultrasound on 3 days to watch for growth of some nodules.
I do not feel guilty or ashamed to be getting this "free" coverage. I have paid income taxes for over 25 years which include Social Security and Medicare.

[Cloulou]

I understand your desire to "not make things worse financially" however I think I am also hearing depression and a sense of hopelessness, not all of which is related to your health issues. Is there someone that you can talk to about this, clergy, a close friend or relative or a psychologist that will allow you to pay on a sliding scale? (mine does).

If I can suggest that you go into this forum with the Doctor and ask about options for someone in your situation. I would certainly explore all of the options because Thyroid Cancer is one of the easiest, least costly cancers to treat and this could be behind you with little or no additional financial burden.

I hope you are able to resolve this and find a way to receive treatment. Although I did have health coverage when I had surgery and treatment, I saw the bills and they were not as bad as you might think. I wish you the best.
Cloulou

[Marpo1]

I have been reading the post here but can't find where you are from.  But, if you live in the USA you can apply for Disability and get medicare/medicaid to pay your doctor bills.
I know a few people that have GRaves' disease that have recieeed disablitiy for their Graves'.  You must try every avenue .  Please don't give up.  

[ChitChatNine]

Thank you so much for your time putting this together.  Anytime you'd like to do an entry in the health pages you are more than welcome to do so .. what you cited is powerful stuff.

C~

[seawha]

Hello Bluestarmom,

I will try to answer your question...I am a Oncology nurse and have counseled  the dying on what to expect...

First, here are a few snippets of what I took from various sites...
--------------------------

If thyroid cancer spreads (metastasizes) outside the thyroid, cancer cells are often found in nearby lymph nodes, nerves, or blood vessels. If the cancer has reached these lymph nodes, cancer cells may have also spread to other lymph nodes or to other organs, such as the lungs or bones.

Follicular Thyroid Cancer is the second most common thyroid malignancy. Early spread may occur and the patient may present with distant metastasis to bone, lung, brain, skin and adrenal glands.

Vascular invasion is characteristic for follicular carcinoma and therefore distant metastasis is more common. Distant metastasis may occur in a small primary. Lung, bone, brain, liver, bladder, and skin are potential sites of distant spread.

Follicular thyroid cancer is associated with a higher mortality than Papillary Thyroid Cancer because of its tendency to metastasize. In the Mayo Clinic multivariate analysis of 100 patients with follicular thyroid cancer, age greater than 50 years, marked vascular invasion, and distant metastatic disease were independent predictors of thyroid cancer-related death.20 The 20-year survival rate was approximately 95% for patients less than age 50 and about 50% for patients older than age 50. In patients over 50 years of age who had either marked vascular invasion or metastatic disease at the time of diagnosis, the cumulative thyroid cancer mortality was 53% at 5 years and 92% at 20 years; in patients who were less than 50 years of age with no vascular invasion or metastatic disease, the 5-year mortality rate was 1% and the 20-year mortality rate was 14%. Ladurner et al reported a worse prognosis in patients older than 50 years of age at the time of diagnosis of follicular thyroid cancer, and Crile et al reported a worse prognosis for patients older than 60 years of age.

--------------------------

OK.  Now the symptoms...

Untreated Thyroid cancer (or any cancer) can lead to Metastasis which can result in a multitude of issues, a few or many, depends on where the cancer is...

Brain: Dizziness, confusion, disorientation, pain, emotional outbursts.
Bone: Pain, anemia, bleeding, pain &/or paralysis of
         extremities if spine compression, pain.
Lung: From low oxygen levels there is shortness of breath, air
         hunger, confusion, disorientation, anxiety, pain.
Liver: Abdominal pain, bloated abdomen, yellow skin, nausea,
         vomiting, pain.
Bowel: Bleeding or blood in bowel movements, pain, abd. bloating,
         nausea, vomiting, constipation or inability to move bowels,
         pain.
Skin: Lumps and discoloration of areas, non healing ulcerations,
         pain.
Thyroid: Gradual increase of the gland size could result in
            compression of  any of the structures in the neck and    
            upper chest possibly resulting in gradual
            constriction of the nerves, blood vessels, spine, windpipe,
            esophagus...so paralysis, decreased blood flow to the
            head in general, decreased ability leading to inability to
            breath, decreased ability to swallow leading to inability to
            swallow, pain, and anxiety.

General symptoms that can be attributed to a combination of causes are weakness, inability to care for oneself, bowel incontinence, pain and weight loss to the extreme, and pain.

Toward the end, a dying person can remain conscious or lapse into unconsciousness.  The breathing will become labored.  The bodys circulation and organs gradually cease their efficient functions resulting in generalized swelling, purple fingernails and extremities.
Death can come quickly or slowly...
---------------------------

From what you describe, it's possible the neck area will be affected more quickly (see Thyroid above).
-------------------------

Anyone has the right to decide to accept or refuse treatment of any health issue. If you truly don't want treatment you MUST make your wishes known to all who will be involved...Your husband, children, doctor.  Make out a living will and decide who you wish to be your health care Power Of Attorney in the event you are unable to make your own decisions or make your wishes known.  Make your wishes known especially to the MPOA...they should be someone you absolutely trust to follow your wishes.  Make out a will. If you become too ill to determine your fate and don't do the above, your care will be out of your hands and be decided by others.
-------------------------

Lastly, deciding to not take treatment is so un-necessary in this day and age.  The non-profit facility will take on your care and will have social-workers to help you find a way to pay.  There is many ways.

My Mother in law paid for her care with a credit card and declared bankruptcy.  No shame in that.  No good doctor would let you not have treatment for a lack of insurance or money.

What you don't realize is that there will be more than just you involved in this, treatment or no treatment.  Toward the end, those who love you will suffer with you.

I am praying for you as I type this, that you make the right and best decision for yourself AND for those who love you.

Cindy

[pep88]

Just thought I'd add (I don't think anyone mentioned...and maybe Bluestarmom just doesn't know...) that thyroid cancer is a pretty easily treated cancer.  I didn't have a goiter, but I did have thryoid cancer.  

Bluestar mentioned that she'd had cancer twice before, but didn't mention what type.  Not sure, but if she's thinking that it will be like the other cancer's she's faced (they were possibly more involved and spendy), maybe that's why she's hesitating about treatment.  

Really, it's NOT THAT BAD.  And the treatment course is short.  Just the surgery and RAI if cancer is found in the goiter.  That's one radioactive pill taken only once (hopefully) if cancer is found and found early.  Not the extended type of chemo and radiation needed for other cancers.  IF IT'S CAUGHT EARLY.  Don't wait.

I'm a fan of AR's response.  That staying untreated and in pain for that long drawn out period of time, will be not only agonizing and unnecessary (for youself and your family), but spendy!  More so than getting the surgery and RAI via some cheritable organization or teaching hospital.

[ChitChatNine]

Thanks everybody for your thoughts.  I hope they help the original poster realize that life is most important for the majority of us, and we have offered many viable ideas to act on.  In my opinion, it's ok to wonder about the ? you ask, but as AR-10 pointed out, dying probably would cost more than finding the cure for you. Personally, as a thyroid cancer survivor, I would never act on your ? ... a hospice is a great idea if you decide against the alternatives listed above.   I'd be in debt and claim bankruptcy before I'd let Cancer even have a chance to win.

C~

[Thypatient]

It's irritating that someone would even have to think in this vane because of money.  I hate to see it have that much power.  Please pursue the investigation of using it to your benefit, instead of pursing the investigation of excusing yourself from it.

There are charities out there to help with medical needs – your county social service agency; Catholic Charities; hospital indigent programs, etc.  Maybe your dr can help guide you.

If you want to find out the steps that could happen from going untreated, well… that seems an endless list of unpleasantness.

I recently met a fellow thyroid-removed person. It was a woman who said part of her story was that she ignored drs original recommendations and held out for two more years.  It sounded like two years not worth it.  All she kept saying was that she was lucky to be alive.  And she stressed the word ‘alive.’

I read where a goiter (enlarged thyroid) can grow and branch out to the point where it becomes so marbleized within other tissue it can’t be removed.  That’s whether it’s cancer or not.  So if it isn’t cancer and that happens, should it become cancer someone would become completely helpless.

You’re worth more than that.

I like what pep88 said regarding your family:  “Have you given them a say in this?”  Please don’t put yourself or your family through anything unnecessary.

Do make treatment an option.  No, better yet, make it a decision!

Good luck.

[redheadaussie]

You have every right to do what you think is right. I think ultimately what you want to know is how it will affect you. It won't be easy...(these are the facts, nothing less)....you will slowly choke to death, it will get harder and harder to swallow food, breathing will become so laboured you may need oxygen, your carotid artery will become compressed leaving you with little oxygen to the brain and this will cause either hallucinations or bran dysfunction. By then you won't even know your own name.
Your levels of thyroid hormones will more than likely go hypothyroid, where your body functions slow down, intenstines don't digest food properly,heart will try hard to compensate, you will get palpitations, breathlessness....eventually, either you will stop breathing one night or you will slip into a coma and pass away without any pain.
  You aren't terminal yet, but you are willing to decide which path you want, and that is ok. As dogdancing above this post says, do make sure your family are involved in the process of your choice. I have done both saving and letting people die, and ultimately it is not up to me or anyone else, but yourself.
I wish you the best for your choice.
  

[Dogdancing]

Totally get where your coming from. If you life in the USA you should see if your town has a hospice. If Im  not mistaken the services to terminal clients is free. There is help avaible to you so you can die with dignity, and more importantly as pain free as possible.

I work in a nursing home and in my twenty five years I have sat with and watched several people die from various throat related cancers. Not a pleasent site. I strongly urge you to look into hospice. That support will give you much needed peace, as well as offer counciling to your family.

We have forgotten how to die in this day and age. So much emphasis is placed on saving life at all cost, robbing people of there right to choose.

I would just toss in that if you havent told your family, that you do so. You want to ease there burdon and pain, that is why you are choosing this path. Dont deny them the right to grieve and mourn with you. You cant protect them from the pain of losing you, but you can ease it by giving them time to say goodbye.

peace be the journey

Paja

[AR-10]

If the nodules and or goiter are cancerous, the cancer will eventually spread throughout the body. The lymph nodes would probably be affected first, and then it could manifest anywhere.

If the goiter grows large enough, it will deviate the windpipe and compress nerves and blood vessels. There is no guarantee it will just keep growing and growing, though.

Either scenario will be drawn out and very uncomfortable. Likely you would suffer both scenarios before it was over.

Has your state not one single hospital for indigents? In Iowa you would be sent to Iowa City, which also happens to be a teaching hospital. Surely there is some resource available.

What you are looking at is neither quick nor pleasant. It probably will cost at least as much to die as getting it taken care of, by the time you throw in the funeral your son may not be able to attend.    

If things go badly, dying may be a lot more expensive than fixing the problem. Especially if you can fix the problem with the help of some sort of assistance program.