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.  

[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.  

[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...
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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.

[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.