What To Expect?

I have recently been diagnosed with squamous cell carcinoma at the base of my tongue.

I am what sounds like the classic case. It started with a mild sore throat and went undiagnosed  until it went into my lymph nodes on the left side of my neck and caused an observable lump on the side of my neck.

I have had a CT scan and a biopsy done. I am being scheduled for a PET scan yet this week.

Although the soreness in my throat is increasing, I am more concerned with the growing burning pain on the left side of my neck surrounding my lymph nodes near my jaw bone. 400 mg of ibuprofen every 10-12 hours seems to be handling it for now.

I don't believe I am going to have it treated and I am trying to learn what to expect and how much time I have before my life begins to significantly be impacted.

Can anyone give me some insight?  I realize every case is different, but I would greatly appreciate some feedback.

 Thank You! ...very much

Let me say first that it is your life and you are the only one who can make the decision about treatment. I don't know your situation but let me say secondly that you may want to rethink not getting treatment, especially if you have a family. If you are afraid for yourself, think of them. If you think that the treatment will be painful and difficult you are correct, but not getting treatment may be much, much worse and it won't get better on its own. If you don't care about trying to rid yourself of the SCC then why even ask for advice. Just ride it out until the end. It'll do what it's going to do. Most of the people on this board have faced the cancer diagnosis and the treatment so we wouldn't really know what's going to happen without it. Like I said, it is entirely your decision so I wish you the best with whatever you choose.

Good Luck!

Joe 

 

On 3/4/2008 Defjoeb wrote:

Let me say first that it is your life and you are the only one who can make the decision about treatment. I don't know your situation but let me say secondly that you may want to rethink not getting treatment, especially if you have a family. If you are afraid for yourself, think of them. If you think that the treatment will be painful and difficult you are correct, but not getting treatment may be much, much worse and it won't get better on its own. If you don't care about trying to rid yourself of the SCC then why even ask for advice. Just ride it out until the end. It'll do what it's going to do. Most of the people on this board have faced the cancer diagnosis and the treatment so we wouldn't really know what's going to happen without it. Like I said, it is entirely your decision so I wish you the best with whatever you choose.

Good Luck!

Joe 

Hello Joe,

 All good thoughts and I appreciate them.

 I do have a (great) family, and it is for their benefit, not mine that I am considering not having treatment.

I am 54 years old.  I have been married to a great gal for the past 31 years.  I have two wonderful children, ages 28 and 25.

My wife and I started and ran our own (small) company from 1986 thru 2005.  We closed our business (just in time) after we had struggled to keep our doors open for about the previous 3 years.  We just couldn't compete with the imported copies of our products that others were bringing in from overseas.

Since then, I have not been able to find employment other than commission only sales positions.  I have found that I am more of a business/project manager than a pure sales person, but I have been told that I am too far along in my career and that I am more of a generalist than a specialist.

During this same time we have always paid for our own health insurance and back in 2005 we converted to a larger deductible  HSA policy with Blue Cross Blue Shield of Wisconsin to try and save on premiums.  Well, I didn't read all of the tons of literature that they sent us while they first sold to Wellpoint and then shortly thereafter to Anthem Blue Cross Blue Shield. In January of 2007, they sent us a rather vague 'convertion' letter which I didn't recognize as having any real importance and they converted our policy (without our acknowledgment or authorization) to a much larger co-pay and annual out of pocket plan.

As a result of all of the above, so that I don't leave my family in poverty, I am considering not having any treatment and to maximize the time we will have together.  This is why I am trying  to identify the typical chain of events associated with this cancer. 

Am I concerned/worried about the future pain, absolutely, as it will inevitably impact the remaining time I will have with them.

But don't judge me a coward or weak.  Emotionally, it would be much, much easier to fight than to knowingly do nothing, recognizing that I am  significantly reducing the time I will have with them.  But, at the same time I will have the peace of mind knowing that I will be leaving them financially able to move forward. 

So...again, if anyone would be kind enough to share any insight on what I can expect, I would greatly appreciate it.  Knowing won't necessarily make it easier, it will just help me to plan better.

 Thank You...very much!

I totally understand where you are coming from. 

The short of my story is that my wife was diagnosed with colon cancer in jan of 04 and after $120,000 worth of surgery and treatment, died in Mar. 04.

I was diagnosed with laryngial cancer and had some squamos cells on my tounge, superglottis and in the soft palette.  Since I was a single parent with 3 kids, I did the surgery, chemo, radiation  (4 rounds of each) and I'm still fighting the cancer.  (I start my 4th round of radiation this week).  I have some good moments and some not so good moments.  I have been able to work through most of it, with just a little time off around treatments.  I have insurance but it has cost me dearly, but my family has always known me as a fighter and that is what I am doing.  The treatments etc, have changed the way I view life, and what is important.

I serioulsy considered doing nothing, and I really didn't want to do chemo-- after the way if affected my wife.  But I think I chose the right course-- to seek treatment.

I have decent insurance, but even the 20% are big.  The dr. offices will work with you and let you pay it out with no interest and they can write off some of it.  I learned not to charge any treatments and wait to pay when they billed (not up front).  Look for clinical trials that will cover the cost of the meds and treatments and tell your dr. it is a financial strain-- mine really cares.

Everytime the dr. wants to start a new regimine, I seriously consider telling him to 'stick it' but I know that he has my interest at heart, and I know what I would do to spend just a few more days with my wife-- so I imagine my kids feel the same way and I want to give them as long as I can.

While I don't have my cancer beat-- it is not beating me.  Some day, I look forward to hear the dr. say that I am cancer free.  I hope you someday can hear the same.

 

Thank you for your response!!

Just hearing back from someone that has or is going through some of the same somehow adds comfort.

I wish I was a wizard and I could make this all go away for all of us.

Actually, I think your children must think you are some kind of wizard for being able to fight through it as you have for them.

Who would have ever guessed that we would be having this conversation?

Thanks again for responding and I pray you will hear you have beaten your cancer very soon.

 

 

 

Wow! I just read all the responses to your situation. It is unfortunate that you and your family are facing this. Have you received the results of your PET scan yet? That in itself may be your determing factor. If your cancer is in a general location and even if it is in a stage 4, I'd say go for the treatment, but you need the attitude that you are going to beat it. Because if you have any negativity in your heart and sole, it will be harder for your body to fight it. My boyfriend had cancer of the tonsil and in some of the lymph nodes in his neck, but no where else in his body. He was a stage 4. He did 42 bouts of radiation and chemo every week once a week, and he has come back clean. He lost 50lbs and had a feeding tube inserted after getting sick for a month. He thought he could get by with out it. But now that is gone, he does not have his taste back or saliva, but hopefully that will come back in time. He went back to work after he was off for 6 weeks, but we were fortunate, his employer still gave him a paycheck for the time off. I gave him massages almost everyday and still do. I feel that having someone that cares about you and touches you gives you the strength to go on. Plus he went to a professional massage therapist. His radiation doctor also believes in high dosages of Vit C. Cancer hates Vit C, and hardly no or any sugar. Cancer loves sugar. Infact his own doctor who does not have cancer, takes very high dosages of Vit C everyday. Like 10000 units of it. Jim (my boyfriend) could not stomach that amount, he got as high as 4000 units, and is down to 1000 today. As for you worring about the doctor and hospital bills, there are agencies out there that can help to some degree, including the American Cancer Society. Plus most hospitals that are run by the state and even some private hospitals (those run by churches) have ways of helping pay off some of the bills. They won't tell you about this, unless you ask. If you are near a university hospital, they are teaching hospitals, and have different programs too that could help you out financially. You are not the only person or family going threw such a hard ship. Your life is not worth a price tag. Please wait to see what all your options are before you make such a rash decsion as to let yourself die. My boyfriend and I watched his father do what you want to do. He had colon cancer and believe it or not he was a Dr of Chiropratitic & Holistic Dr. He knew somthing was wrong, but did nothing about it, until Jim made him go to a doctor. He found out he had colon cancer, and it had not spread yet, he decided to do nothing about it. We watched him wither away to nothing. He literally starved himselft to death. He had insurance too. They could not afford to bring help in to take care of him. So his children took off work for 6 weeks to take care of him. His wife couldn't even handle going into to see him suffer, then in his last days Hospice helped some. So when my boyfriend found out he had cancer, he said he was not going to go out like his dad, and he fought it.  So please don't put yourself on death row yet. May God and your family be with you.

Suzanne

 

CANCER IS NOT A DEATH SENTENCE!  April of 2006 I developed the same lump in my throat.  I was already seeing an oncologist at University of Michigan Hospital for a follow up for an early stage of Non-Hodkins Lymphoma I had beaten.  I was diagnosed with stage 4 SCC at the base of my tongue with the lymph nodes involved on the left side of my neck.  I couldn't believe it!  But I began  3 rounds of chemo which I lost my hair.  Then I began 36 rounds of radiation, which turned my throat to a pretty sore puppy.  I needed to use a feeding tube for a few months and to this day my taste buds are a bit out of whack.  I needed vicoden for months to keep the pain at bay, but things begin to heal. It's been a about a year and a half since my last treatment and so far I'm cancer free.  I always have a bottle of water to help with dry mouth, but I am alive!  Every time I play with my grandkids I remember I'm alive!  Would I go through it again?  In a heartbeat!  I believe in fighting my cancer till I can't fight no more.  Life is too important to me and too precious to just lay back and let it consume me.  Fight for your life!

 

On 3/4/2008 bugman wrote:

I have recently been diagnosed with squamous cell carcinoma at the base of my tongue.

I am what sounds like the classic case. It started with a mild sore throat and went undiagnosed  until it went into my lymph nodes on the left side of my neck and caused an observable lump on the side of my neck.

I have had a CT scan and a biopsy done. I am being scheduled for a PET scan yet this week.

Although the soreness in my throat is increasing, I am more concerned with the growing burning pain on the left side of my neck surrounding my lymph nodes near my jaw bone. 400 mg of ibuprofen every 10-12 hours seems to be handling it for now.

I don't believe I am going to have it treated and I am trying to learn what to expect and how much time I have before my life begins to significantly be impacted.

Can anyone give me some insight?  I realize every case is different, but I would greatly appreciate some feedback.

 Thank You! ...very much

My father was diagnosed with SSC of the supraglottis and went through radiation treatment.  As each patient is unique, you do have to decide for yourself whether or not to go through treatment.  I begged my Dad to do Naturopathic as his immune system had been so weakened by sepsis after hip surgery.  My Dad died a year ago of radiation encephalitis and necrosis and acute renal failure (after 33 radiation treatments).  Please go to cancerx.org and learn all you can about how the cancer process starts - and then weigh your options.  I would give anything to have my father back.  He was old school and refused to spend his savings on Naturopathic treatment - wanted to be able to cover burial expenses and  owe no one.  I find that so tragic and hope that your family convinces you to fight with all you've got.

Best of luck

Sandi

 

what about state funded intities? Medicaid for instance. I am in Arkansas, but they have something called a Spin Down, which basically is a short term medicaid. You have to reapply every three months, but they help. Surely with your financial issues you will be able to get it. You could also try the Social security office...you might be able to qualify for disability. I do not know all the details, but my husband is almost 45 and we thing his primary was in a tonsil. We find out today! FINGERS CROSSED! We get to start his treatments soon, find all about that today as well. good luck! Everyone is in our prayers.

Hi Suzy,

 My sister has squamous cell cancer.  It started on her tongue, then

spread to her lympnodes, neck, lung, bone, etc.  I really want her

to try the vitamin c infusions, but her Dr. doesn't believe it will work.

She seems to be getting worse.  The Dr wants to start her back on the

chemo tomorrow, but I don't understand why she can't do both.  I know

I have read where you can have Chemo and Vitamin C at the same time.

The Dr thinks it will be too big of a shock to her system.  How did your

boyfriend seem to do on Vitamin C. You said his Dr. believed in it. That seems rare since most Dr.'s don't believe in Holistic medicine.

Any info you can give me would be greatly appreciated!  I want  to start

the Vitamin C infusion yesterday, but her husband is leary of the effects

with chemo.  Thanks,  Shelly