Right tonsil cancer HPV 16 Surgery / neck dissection

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RE: Right tonsil cancer HPV 16 Surgery / neck dissection

by BillNOLA on Tue Feb 10, 2015 01:07 AM

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Hi Brenda. So sorry to hear what you're about to go through. Good luck on Thursday, I have confidence you'll do just fine. I see that you said, "I noticed that I had a bump on the right side of my neck. No pain, no symptoms whatsoever just the bump." Same here, shaving one morning in late July 2014, noticed a bump in my right neck. No pain, no issues or symptoms of an issue.

I knew nothing about cancer prior to my journey. Everything I read was doom and gloom. My experience has proven that wrong. I was able to eat soft solids after 2 weeks, nearly all solids after 3.5 weeks. The only bad pain I had was day 7 & 8 after surgery. My throat hurt really bad but only for a couple of days. After that, I felt better each subsequent day.

You'll do just fine with the surgery. May I ask your age. I'm 60 and age has lots to do with tonsil surgery. Even at my age, not that big of a deal for me. I also had a neck dissection, in surgery for 9 hours.

I also had radiation, 30 sessions over 6 weeks and once a week chemotherapy for 7 weeks, so 7 sessions. No issues at all with cheotherapy. Radiation, only the obvious, swollen throat, difficulty swallowing and a bad sunburn like burn on my neck that lasted about 10 days.

About 3 weeks after final radiation and chemotherapy, I started to heal quick. I'm now 5 weeks out and doing just great. Eating most foods and feeling well.

If you would like anything in the way of specific information from me, don't hesitate to ask. I'm willing to share all experiences. I've kept a journal of every day since I started on this. First doctor visit, July 27; surgery, October 1; chemotherapy start, November 10; radiation start, November 17. Last chemotherapy, December 26 and last radiation December 30.

Good luck Brenda.

Bill

RE: Right tonsil cancer HPV 16 Surgery / neck dissection

by Bluecarribean on Tue Feb 10, 2015 06:28 PM

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Hi Bill! I am 51 years old with your exact diagnose p16 positive and light smoking. Let me ask you; Did your taste came back to normal? What about speech? Were you were able to speak the very first days of the surgery or not? I am having a robotic surgery to remove my tonsils and neck dissection to remove the right lymph node. Ahh talking about the neck does it remains stiff for long ? I am worried because I work as a skin care therapist or facialist and work is based using my neck and head to watch thru a magnifying lamp! I took just a month as leave of absence. Would you think a month post op will be enough? So once I start either radio or chemo or both, then will take it day by day?? work wise! Loll . I will keep bothering you with my questions??just kidding ??! I already have my humidifier ready ! Thank you Bill Cordially, Brenda

RE: Right tonsil cancer HPV 16 Surgery / neck dissection

by BillNOLA on Tue Feb 10, 2015 11:19 PM

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Hi Brenda, answering your questions:

Taste is not nearly back to normal. I started radiation November 17 and on Thanksgiving day, food was horrible. I did eat solids until about the first week of December. Last radiation was December 30, first solid food after that was about February 1. So, it's not been too long that I've been eating. The answer is no, food mostly does not taste good. But, it's also not revolting either, just not good or as I remember. The items that taste best (mosly means like they used to) is a very short list: eggs, grilled fish of any type, mashed potatoes, grits, cauliflower, and brussels sprouts that's it. The only other items I've eaten are: spagetti with marinara and beef, crock pot roast, green beans, ice cream, and apple pie. All of them did not taste good. I tried a sandwich and no way, it was like putting cotton in my mouth, super dry. I get a metallic taste and it's really strong if it's something out of a can. Anything sweet like sweet tea, sugar in coffee, ice cream, etc. is not good. The less sugar, the better it tastes.

I was able speak the day of surgery and every day afterward. Same with radiation. There were times when my voice was raspy or hoarse and sometimes my voice even got tired, if that makes sense. But, I was always able to speak.

I have scar tissue in my neck from surgery performed October 1st. It's hard as a rock, very stiff and not too comfortable. I'm getting used to it, but it's a pain when driving. I have no pain, but it is uncomfortable. I have limited motion both right and left and very limited looking up. My doctor said it would take 6 month to a year for the scar tissue to go away and my motion to return to normal. I've had friends with similar surgeries, same answer from their experience.

A month after surgery is probably good if you can do it. We're all different so don't take my answer as THE ANSWER. For me, I was okay 2 weeks after surgery to return to work. After 3 weeks I was eating most everything. I was able to take off work from September through this past week. That helped a lot, but I did work from time to time. I'd say the worst times and when I really was unable to work was for 3 weeks after surgery and again from week 5 of radiation for 3 weeks. So, 3 weeks two different times for a total of 6 weeks.

Humidifier really important and so is drinking lots and lots of water. I drank water all night long, about every 30 minutes. You know what that causes, bathroom trips, but not so bad. The good news is I never ever felt scabs in my throat. The amout of water I drank kept them soft and not scratchy on my throat or tongue.

You may bother me as much as you like. I'm happy to answer anything you ask if I'm able to make this easier for you. :-)

Bill

RE: Right tonsil cancer HPV 16 Surgery / neck dissection

by Mkk62 on Wed Feb 11, 2015 04:58 PM

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Hi Brenda I too had surgery in Miami with the same doctors After having done an extensive research throughout the state and United States they are apparently the best in Florida They also have a great pathologist there and a good tumor board to determine the best tx afterwards. I had my surgery December 22 just starting chemo radiation stage 4 Good luck if you have any questions let us know when you're in great hands Mike

RE: Right tonsil cancer HPV 16 Surgery / neck dissection

by Bluecarribean on Thu Feb 12, 2015 03:30 AM

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Hi Mike ! sorry to answer this late! I've been running errands and sharing with my kids amd mom. I have everything ready for tomorrow and happy to know that somebody from here had surgery with the same doctors and that you had a good experience. I put my trust on God and confident that the Almighty will show his glory . I i have many questions for you as first day or days post up, milestones and progress. Please tell me regarding food swallowing, speech,neck stiffness, time off work , and anything that you may consider important to share ??. Thank you for your time and for sharing! brenda

RE: Right tonsil cancer HPV 16 Surgery / neck dissection

by Mkk62 on Thu Feb 12, 2015 03:47 AM

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Hi Brenda I was back to work in two weeks I was eating pretty well I treated three weeks the presort eat that first week I lost 8 to 10 pounds and regain it back a month after surgery last week I just started chemo radiation so I'm prepared for the second round Cannot be in the hospital probably somewhere between 3 to 7 days I was in only three but that was because I wanted to get out on Christmas Day Did lots of ensure plus so you can regain their weight after surgery Just like Bill said lots of drinking water get a recliner good humidifier The first week or two you might need pain pills to try to eat. Don't take the liquid Roxicodone burns like crazy at first week. Have them mixup the Percocet can grind it in water is much better. You're in good hands good luck Mike

RE: Right tonsil cancer HPV 16 Surgery / neck dissection

by Mkk62 on Thu Feb 12, 2015 03:48 AM

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Should say count on being in hospital.

RE: Right tonsil cancer HPV 16 Surgery / neck dissection

by andrecoffin on Mon Mar 02, 2015 12:31 AM

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Hi Brenda,

My name is andre (french.. excuse my english)  and I just had 2 surgeries (lymphnode right side of my neck) and Robotic tonsolectomy (right side of my throat 15 days later) . Have you had you operations yet ? If you like, I can send you my experience.. I just wrote about 15 pages the last 2 months or so. I have decided not to go throuhg radio or chemio therapies. I am just recovering from the tonsolectomy my operation was on 20th february. Im am doing pretty well and I trust I am cleared of cancer (so-far) my E mail is andre.coffin @bigpond.com I will be glad to send you my experience You might find things to help. Regards Andre

RE: Right tonsil cancer HPV 16 Surgery / neck dissection

by Mbrosnan on Sun Aug 23, 2015 08:31 PM

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Bill First thanks for sharing all of your journey so far. I'm the new guy in the room here. It's day 4 after surgery and grateful to be out of hospital. I'm 53 years old ex smoker and HPV negative but p16 was present on pathology. I had modified radical neck dissection at Sloane in NY. I am eating whatever I can to keep weight on in the case I go for radiation, they have ruled out chemo as I was early. The throat pain is strong, trouble swallowing and YES to the humidifier, works great. I have had a hose hooked up to it that sits inches from my mouth at night. The oral rinses have also provided a huge relief and kept mouth moist. I discovered it the same as you, I was singing one day and felt a lump, less than 2cm. Biopsy on tonsil revealed squamous cell carcinoma, MRI and PETscan in less than a week and surgery within three from date of biopsy. So I was diagnosed T1 N1 stage three if that helps anyone in regards to relating or gathering info. I have been given a new set of ears and eyes from which to see and hear the world with. Amazed at the empathy and dedication of nurses, doctors , techs, cleaners and on and on that work in this field. I'm glad to hear how well you are doing, it gives me hope where there is very little if you troll cancer sites, your story is encouraging and I will stay in touch and post to keep being updated and to update you if you don't mind. Thanks bill Xo Mike
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