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Sdurnell's Message Board Messages

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RE: Tonsil cancer

by Sdurnell - July 31 at 6:12 AM

Danny,

I'd guess that your doctor means that something looks a bit strange to her, but she is not prepared to diagnoe is and wants you to get an expert opinion, which the ENT will provide.

Best of luck to you.

Susan

RE: Ulcer On base of tongue

by Sdurnell - July 31 at 6:07 AM

Danny,

It''s best to ask the doctor when you see her, as we are not medical folks here.

Best of luck to you.

Susan

Carboplatin

by Sdurnell - July 26 at 10:33 PM

My sister-in-law is starting chemo with carboplatin for a different cancer (endrometrial).  She has been told that it doesn't cause hearing loss like cisplatin does.  Does anyone have any experience with this who could educate me?

Thanks!

Susan

Deputy,

My case was somewhat similar.  Eight years ago I had one enlarged, painless, lymph node.  Had a CT and after that my primary doctor sent me to an ENT/neck surgeon who did a fine needle aspiration biopsy of it.  That turned out to be inconclusive (I don't hear that much at all on these forums), so I had a modified radical neck dissection, which involved removing all 20+ lymph nodes on that side.  The pathology report only found cancer in the one, and it was encapsulated.  It also tested negative for HPV, which was pretty weird since I've never smoked, am only a light drinker, and am not male.  (Since then my doctors have told me they suspect that it was a false negative.)

So I had all my teeth out (bad gums) and after my mouth healed started radiation, no chemo.  They did my whole neck too because no primary was ever found.  Declared cured at 2 years by my ENT, and at 5 by the oncologist.  

I think it's good that the doctors want to check in so often (every three months at first for me), so if there is any problem it will be found right away.  

I had a false positive once, but fortunately not the first PET.  I developed a swallowing problem that no one could diagnose, and finally began a series of throat dilations by a GI to open it up.  And one time I went to a PET before I'd waited long enough to heal from the dilation, but I told the doctor, and he was able to understand why I was lighting up.  My radiation oncologist ordered all the scans, and unlike a medical oncologist he was able to read them himself before they even got to the pathologist.  I'd get the scan in the morning and he'd show it to me after lunch--also a great stress reliever, not having to wait for days.  So he could tip the pathologist off about why I was glowing, and none of us had to worry.

I hope all goes well for you.

Susan

Deputy,

Did you have radiation only or surgery too?  

I had a modified radical neck dissection first because I didn't have a firm diagnosis.  That surgery provided it--SCC, stage II, non HPV related, no primary found, only in one lymph node.  Then radiation followed.

But I wanted to tell you that my neck dissection was a piece of cake.  I never even needed pain meds.  I had some minor issues later, after radiation to the surgical site, but they were/are not serious.  So if you have to have it, go for it!

And try not to dread the upcoming scans too much.  I looked at them this way--either they would be clear, in which case I'd carry on with my plans, or they'd find an early sign of something I needed to deal with, in which case I'd get a new plan.

Also, my radiation oncologist insisted on waiting four months before I had a post-treatment scan.  He said any earlier and you run the risk of a false positive, which can needlessly drive fear into one's heart.  And I've noticed that some folks on these sites do get false readings when they have scans at 3 months, just because the healing is not complete enough yet, making it light up as if cancer is still there.  

All the best to you.  I hope you can tolerate the slow pace of recovery, and that you are getting a lot of calories and protein to help you heal.

Susan

RE: tonsil cancer afraid..

by Sdurnell - June 22 at 5:36 AM

Jennie,

Chemo does not cure this cancer, but it can aid radiation by helping to shrink tumors.  No one is treated with chemo alone, but some get only radiation, or radiation after surgery, as I did.  (And some have all three, while others get surgery only.)

Is his cancer HPV positive?  If so, he has a better chance of cure than if it's caused by tobacco use and drinking. Doctors have fairly recently realized that these tumors can also be treated less aggressively sometimes and still have a good outcome. There are clinical trials being done to find out what is effective; they are trying to decrease the awful effects of radiation.

I had radiation only 8+ years ago, 25 sessions, and I was cured.  The doctors never found my primary tumor, and I had one affected lymph node that was encapsulated and surgically removed.  There are many variations in presentation that affect treatment options as well.

All the best to you and your brother, and thanks for being his help and advocate.

Susan

RE: Anyone there?

by Sdurnell - June 17 at 1:22 AM

That's really too bad, as we are all here to help and get help.  I've noticed that in the last year or so many of my posts go to a moderator first, but usually they end up posted.  I suspect that it's due to flaws in the site.  Another one is that there is no spell check here.

I also participate in the head and neck cancer forum on the Inspire site and find it much more reliable and professionally run. 

Now, will this comment be sent to the censors and make it past?  I shall see!

Susan

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 - June 15 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

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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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