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Sdurnell's Message Board Messages

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On May 27, 2019 8:36 PM rey7000000 wrote:

 

I am 16 years out from head and neck treatment for nasopharyngeal cancer, and my real radiation treatment side effects started about ten years after treatment, when the statue of limitation it’s long gone and you can’t sue them, and they certainly know that. Radiation treatment side effect keep getting worst and worst after 16 years; situation that doctors never tell you so you accept the treatment at first, in fact, they promised you the opposite, you will be normal again, and it's a lie. Today I can't talk due to mouth and tongue tissue and muscles inflexibility. I feed my self through a feeding tube in my stomach, I am stage three COPD (very devastating illness) due to my torturing radiation cancer treatment as well. I have chronic pain to my face, hears, mouth, neck and head. If I new then that this would come I would never accept the radiation treatment, I would rather die. Even worst, mychemotherapyoncologist told me after treatment that chemotherapy alone would solve the problem, radiation wasn't necessary after all. And, to top it off, then I had $500.000 dollars life insurance if I die due to that illness; my wife and children would be protected. Now, that ten years term insurance plan is terminated and, I couldn't get a new protection for my family because my existing situation. They won big times and I lost big time. This is the long term reality of head and neck radiation treatment, and it’s not fair for the patient, not at all. 

Rey,

I have done extensive searches in the 8.5 years since I was first diagnosed, and I have not found a single case of head and neck cancer that was cured, or even just treated, with chemo alone.  They don't promise that because it doesn't happen.

I am sorry that you don't feel that your 16 years have been worth the side effects, and that you weren't told there might be late radiation effects, but it sounds as if you had a decent 10 years, and for me there's no putting a price on that.

Best of luck to you.

Susan

RE: tongue cancer

by Sdurnell - Yesterday at 8:57 PM

Kak,

I know that many people have had partially glossectomies (tongue removal) for cancer, and have had varying success with it.  Total removal is, I believe, done but not common.

I agree with getting a second opinion if this has been recommended for you or someone you know.

Susan

RE: Swollen tongue

by Sdurnell - Yesterday at 8:54 PM

John,

If the swelling is recent, I suggest that you contact your doctors about it.  Maybe start with your primary care and go from there if you need to.  There may be something they can suggest to help.

And you can also get a referral to a speech therapist from your cancer center or ENT.  Even if this is not correctable such an expert may be able to help you use what you have left to improve your speech.

All the best,

Susan 

RE: Anyone there?

by Sdurnell - Yesterday at 8:50 PM

Bill,

Thanks for your kind words and also for your advocacy here.  I just feel that I was blessed with good friends, both in real life and online, who helped me immeasurably while I was sick, so the least I can do is try to help others a bit.

I do wonder, and worry a bit, when there is no activity here.

Susan

Rey,

So sorry you feel that you have been cheated by your doctors.  But really, there was then, and is even now, no way to know how a treatment might affect any one individual.  No way to predict what might happen to you or to me, even if we got the same treatment.

But chemotherapy never cures this cancer by itself.  It needs surgery and/or radiation to get it all.

When your treatment was advocated it wasn't known that some tumors are caused by HPV and that those can be treated with less agression, sometimes with no radiation at all.  (Although there is still a chance of a recurrence.)  I had mine done 8.5 years ago, and it was not commonly known then either. 

I am grateful for the years of life I've had since then, being able to see both of my children graduate from college and go out into the world.  But I am already feeling some "late radiation effects" to my voice, and I anticipate that there may be others.

Wishing you all the best,

Susan

Here's a new trial I saw for folks who've not had successful treatment.

https://www.tipifarnibtrials.com/signup/?SQF_SOURCE=HNCAenew

RE: Tonsil cancer

by Sdurnell - May 16 at 8:31 AM

Danny,

How are things going for you?  Have you seen an ENT yet?

The only symptom I had was a swollen lymph node in my neck.  Sometimes more symptoms mean less disease (meaning not cancer).

Susan

Marcia,

He and his doctors should consider esophageal dilation.  It's a simple procedure usually done under sedation, but the first one or two can be pretty tricky with a complete closure like this.  

I had a complete stricture of my upper throat due to radiation for throat cancer and could swallow nothing for months.  My first couple of dilations were not successful, but the doctors took pictures, figured out what they were up against, and then were able to get my throat open a bit.  It took a number of dilations to get it open enough that I could drink and eat by mouth again, but it was worth it.

My best to you and your husband.

Susan

RE: Tonsil cancer

by Sdurnell - May 08 at 1:29 AM

Danny,

It's been more than three months since you first posted.  Do you have a yes or no as far as a cancer diagnosis yet?

Susan

RE: cryotherapy ?

by Sdurnell - May 04 at 4:04 AM

Sometimes head and neck cancer can be cured with surgery alone, and sometimes with radiation alone.  Sometimes radiation is used with surgery and/or chemo.  Those are the only proven ways to cure our cancer.

All the best,

Susan

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About Sdurnell

Patient
Head and Neck Cancer, Squamous Cell Cancer, Throat Cancer
Cancer Nutrition, Radiation

I have squamous cell cancer. A neck dissection showed one node positive (<3 cm.) and encapsulated. No primary has been found. I have no risk factors for this condition. Day after tomorrow I go in to have all my teeth pulled (my teeth are OK, but gums not so great). I will need five weeks of radiation, starting as soon as my mouth heals, and have been told not to lose any weight, even though I'm about 15 # overweight. Everyone is hoping I can avoid a feeding tube, but I'm not confident I can eat enough, especially without any teeth. I'd really like advice and support for this.

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