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CT/PET
2 1/2 months ago I fininshed treatment fir tonsil cancer with lymph node involement. 35 rads and 3 intense chemos. CT was really good. PET in 10 days....and scared to death. Is the CT predictive of PET results?
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Hate it but it's back again
sorry it's been so long, but just yesterday left my ENT office and got my results from my recent ct scans, Was told i have a recurrent from my cancer, this time it's on my base of my tongue, not many options was told to me, First option was open surgery and i was told that,that would consist of loss of tongue,…
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PET scan not covered by insurance?
Just got an EOB (explanation of benefits) yesterday for the PET scan I had in early August, the insurance company has decided it was "medically unnecessary" and isn't going to pay for it. Any of you folks run into this? In retrospect I or my rad onc should have sought preauthorization, but I admit it didn't even occur to…
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Interesting read
Hi, Have not posted in a while but wanted to share an article I came across that's relevant to a lot of us. The following link is to an article about a HPV vaccine that shows promise to those that have HPV. Here is a snippet from the article "vaccine is poised to combat existing infection and prevent and treat the onset of…
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A Must See-Short Video for Cancer Patients and Families
Please look at this video it is 17 minutes it is great for us cancer patients and supporting families and friends and it is called Lost in Transition as we transition from cancer patient to cancer survivor now you are done and they talk about how once treatment is done everybody thinks you are done with treatment,…
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Just venting
Sorry to be a negative nelly, but I need a place to vent, with no judgement. I am about 14 months post treatment for Scc HPV ( tonsil) . 4 months since feeding tube was removed. I lost 50 lbs at first. Another 20 after I started eating on my own. It is a stuggle to eat. Have to have water to wash down most things. My sense…
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Odd Sensations at Neck...
Hi All! Trusting to find you doing well in this journey we are on with good thoughts coming your way! I have a question. Have any of you had a sensation of "being choked...or a tight band around your neck post treatment, partial neck resection, max in rads for SSS of tongue, metz leseion around jugular same side . I…
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6 months post and still have some questions
Im 6mos post and I am still dealing with mucus and having trouble eating foods without chasing it down with water. Doctor said this is normal, and that people are different. I know when I went for my first scope he said pet scan wasn't clear to see if the tumor was gone. Once he scoped I was clean. I still wonder because…
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Bad news responses
Thanks Matt, Russ and Tommy for responding. I will try to stay positive and I agree my doctor shouldn't of alarmed me like that. He's good at his profession but can be insensitive at times. I will try to stay positive. Lost my voice too for last 3 months. Still trying to find where it went! Lol Had a marvelous singing…
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Update - PossibLe bad news
Hi H&N Members: I just saw my ENT specialist this past Thursday. He scoped me and said two times "Oh no." Then told me that my epigoltis was too thick disclored and somewhat bloody. Said it wasn't normal. He said might be cancer, radiation, or another problem. So I have to have a biopsy on Halloween day. I know strange…
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PET Scan readings - Pre- and Post-treatment
Here are the readings from my pet scans. Kindly let me know how do you find these results. (History: Right tonsil Hpv + cancer with lymph nodes involved) Key excerpts from the report below: 1. Previously noted enlarged right cervical lymph nodes have significantly decreased in size. For reference, right level II…
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Hello all! If you have questions about your insurance...
...I may be able to help. First, and most relevant, I have stage 4, HPV+ HNSCC. Been having a lot of fun with it, but haven’t really engaged in any forums about it. Ironically, it was a search for anything new I haven’t tried for the darned dry skin from the Erbitux that brought me here. One of the posts I saw memotioned…
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First Pet san results after treatment.
So i saw my dr today who scoped me for the swelling they suspected in petscan results yesterday. Thanks God the swelling in the voice box was due to radition effect so the dr said it is not to worry about. As for the overall results, the dr said there is an improvement of more than 90% however it was not 100% clear yet.…
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I’m Back Again...
On Sunday I am going back to Dana Farber for a redo of evicting Griselda from my neck....she is a stubborn b**ch!! On the bright side...ALL the nodes in my lung have resolve....that’s right, gone like yesterday’s news. If this cyroablation on my neck works this time I will be cancer free for the first time in 3 years.…
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3 Month PET= NED!!
Hello, Just thought I would send an update on my cancer journey. diagnosed in March with HPV+ HNC, right tonsil and right lymph node. Treatment was 6 weeks daily proton beam radiation at Mayo clinic. Initially insurance denied out of network proton beam rads therapy stating it was "experimental". After a written letter…
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PET scan results - Swelling in Voice box
First post treatment PET Scan results came out today. They say everything looks clear and fine except some swelling in the voice box which might be due to some infection or the radition effect. But they say it must be checked up so They have called me tomorrow for check up. Anybody has this experience? Feeling worried.
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Cancer is very smart
I had a selective neck dissection and as well as The following parts of mouth all on Right side: BOT, Tonsil, glossopharyngealand the right posterolateral pharyngeal wall, plus unexpectedly (when I was openeded up), a largish amout of cancerous cells outside the area with 0.5 cm of SO's saftey margin around the main tumor…
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under the tongue cancer
my significant other, who we have been together for 20 yrs has just been diagnosed with stage 1, and in a few days we go and see the surgeon.. I am terrified because Randy has liver disease and a bleeding problem to begin with... I am so scared.. Thank you for this board so i can vent and be a help to anyone here xo
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Can someone explain immunotherapy?
Hey all, in my continued quest for information for my mom, i'm trying to understand just what immunotherapy is, how it works, what it does, etc. Someone suggested we look at keytruda immunotherapy. i haven't the faintest idea what it is. We do have a consult with the medical oncologist next Tuesday and i will certainly be…
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The C: Section Chronicles - 9-Oct 2018 Update
Very pleased to announce that my recent visit with the oncologist resulted in a further NED (no evidence of disease). There is however a lump on the side of my neck which she says is probably scar tissue from the radiation, but she will keep an eye on it. Next ENT is in December,with a further oncologist clinic in February…
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My Neck Dissection and results; not what my SO and I was expecting.
Hi, I had a selective Neck dissection to remove about 6 or 7 remaining lymph nodes in the right part of the neck (The rest were destroyed by Radiation in Sep to Nov. 2016), as well as The following parts of mouth all on Right side: BOT, Tonsil, glossopharyngealand the right posterolateral pharyngeal wall, plus unexpectedly…
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sore gland
Good morning everyone My husband is 2 wks post treatment--doing very well but has one gland in neck that hurts.Does anyone know if this is normal? Thanks Rita
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Something swollen, what could it be...
It's always something, isn't it? I have something swollen about the size of a pea right under the right side of my chin. Lymph node? But after a radical neck dissection in December along with BOT cancer surgery, I don't HAVE any lymph nodes left in the area, that I'm aware of. So what, pray tell, could it be? Doesn't hurt,…
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Venting....and has it happened to anyone else?
Hey all - so some of you know that my 83 yr old mother has been diagnosed with throat cancer and her treatment option was radiation. She thought about it, even had an appointment to get her teeth pulled, but we explored surgery (not an option, it turns out) and through the course of that time, mom decided she didn't want…
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Just an Update
Hello Everyone! I have not been here in quite a long time. I've been busy with work, shcool and being a wife and mom. :) . I just wanted to share the news that our insurance finally approved a CT scan and the results came back ... NED! My husband is a little over one year cancer free! When I was new here, I always liked…
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Hondo
Hi everyone. I haven't been here in a few years, I forgot my password and was locked out. Alas I have returned with a new account in hubs name:) I was known as IAmStrong back then, with history of Stage 4 SCC of the tongue, metzed around jugular. So far, 8 yrs cancer free! Came because of latent side effects and good info…
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anyone know anything about Phrannie
Hi everyone I have been here reading posts for a couple of months.I have read so many by a wonderful lady named Phrannie.She has been so helpfull to so many.I have noticed she hasnt been on for awhile.I am concerned about her.I have read so many of her postings I feel as if I know her. Thank you Rita
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Neuropathy WITHOUT chemo?
So it started out as Lhermitte's sign, something familiar if not common to a lot of folks on this board. But since then it's progressed to tingling in the hands and feet, primariily on the left side; peripheral neuropathy. I know that's a thing for some who have had chemo. But I didn't have chemo, I had surgery then 30…
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Sleep apnea
Is sleep apnea a common side effect? I am 13 months out from 35 Rad and 2 Cisplatin treatments. My ENT sent me to a sleep lab for testing. CPAP machine has been recommended. I think I am getting better and not quite ready to admit defeat. If anyone else has had experience with this, I would appreciate any thoughts. Deb
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Clinical trials?
Hello, As I posted in another thread, my husband has recurrent squamous cell cancer that has spread to lymph nodes and they cannot operate. He will start chemo Oct 22. I think we should be looking at clinical trials. Anyone have experience with that? Advice? His med oncologist at Kaiser said he will investigate for him,…