Meet others living with Head & Neck Cancer: Introduce yourself

Hello all! So grateful to have found this forum. I am a 58 y.o. wife and mother, never smoker. I have read literally every thread here that is relevant to my recently diagnosed OSCC of the left tonsil. “Debulking biopsy demonstrated p16+ left tonsillar squamous cell carcinoma.” Still have so many questions.
Luckily we live 2 1/2 hours from UPenn Hospital system, and I have met with a specialist for this kind of cancer, Dr. Basu.
I was diagnosed a little over two weeks ago by the local ENT who did a procedure in office to remove a “third tonsil“ that had suddenly appeared that she thought was just a papilloma, and was shocked to discover upon biopsy that it was cancerous.
I have a biopsy under anesthesia scheduled on the 30th of this month because a subsequent MRI shows a small possible remaining tumor under the healed area. Dr. Basu preliminarily has sketched out a treatment plan that includes lymph node dissection followed separately about a week later by TORS surgery to remove the remaining area of concern. After the biopsy, my case will be reviewed by the UPenn tumor board, and a treatment plan will be finalized.
I’m hopeful that we caught this early and I’m praying that radiation and or chemo won’t be required. I’m also grateful that this is apparently a “good“ kind of cancer that responds well to treatment but I’m very much dreading the upcoming surgeries and possible long-term complications.
Anyways, that’s my introduction. Thank you for being here and reading. 💖

Your diagnosis and treatment plan is very similar to mine. I also went to UPenn for my treatment and so far 6 months post I am cancer free. You have a tough road ahead of you but our type of cancer responds very well to treatment. Please reach out with any questions.

Hello @emmjae and welcome to our group of folks who have literally had their head examined. If any question or concern pops up along your path please don't hesitate to reach out. There are many who follow this group and I would think someone would jump in within hours. Sounds like you are in a good place for treatment. @smittyfromcuse knows the ins and outs of UPenn and is great at telling it like it is.
Good healing.

RE: Nasopharyngeal carcinoma - New Patient
Hi, I'm Lenny. I'm a 70 year old woman recently diagnosed with nasopharyngeal cancer. I have had other cancer before (breast, chronic blood) but I must say this one really frightens me. I have had a CAT scan and MRI and need to have a PET scan. Treatment has been suggested as radiation and chemo withcisplatain. I haven't decided yet my course of action. I'm giving things a week or two for me to take this all in as it's such a shock. I have lost about 3/4 of my hearing in my right ear, have nasal congestion, headaches, tinnitus, and some ear pain twinges. This all came on suddenly within the last month. The doctors make it sound relatively easy, as if "oh, just get the chemo and radiation and yes, you might lose some hearing from the radiation and the saliva in your mouth will be reduced but then...you are just fine". I don't believe it. Will you please tell me the truth about the side effects that are certain to happen (so many are listed!) and how you are doing? I sometimes feel doctors downplay how bad things will be and I need to be prepared for the reality of living with this disease not only during treatment but afterwards. Thank you very much! A fellow warrior on this road! Lenny

Hello Lenny @lennyc Welcome to our Connect group. There are many discussions within this group which deal with side effects and what the treatments entail. It becomes clear that we all have different issues with treatment and recovery. Fact is you can expect just about anything. The good news is the survival rate and healthy outcomes have increased dramatically in the last twenty years.
Many of us have had doctors who try to put on a happy face and positive outlook, primarily because it is in the job description. More than once I have asked the question “And how was it for you?” They of course cannot answer this.
You have choice in doctors and treatments (if you are in America) but your choice of of being treated or not is probably not a choice you want to make. That said you have to prepare for a battle not of your choosing and you have to win this battle.
I and others are here to listen, to talk with, to hold your hand. You are in my thoughts.

Hi @lennyc, and welcome to you. I am sorry for your diagnosis. After beginning treatment for my throat (Pyriform Sinus) cancer, the treatment induced pain seemed to increase gradually. After the treatment was totally finished, "normal" functioning began increasing gradually...VERY gradually. In my case, the chemo would have increased survival odds by about 1%, so I opted out and chose radiation only. That said, it was like pulling nails to get the oncologist to admit this statistical fact, so be vigilant with your doctors. Week two of treatment is when the radiation induced sore throat began. I remember going into the treatment waiting area every morning and having a cup of complementary coffee. At week three, it was getting very difficult to swallow, so the coffee machine just sat there staring at me as if to say, "You'll be back, stay strong."
Yes, I did return, but not to that particular coffee machine. It took approximately one year of throat/tongue exercises to regain my swallowing reflex and speaking voice. A feeding tube (FT) was inserted after treatment, even though the doctor recommended having it inserted before treatment. Being from a military family, I stubbornly refused the FT, deciding to "soldier it out!" Yet, you may make it without a FT, as many people have. After a few months, the FT fell out on its own. It was then that a second radiation Swallow Study was scheduled. It showed foods and liquid being held back from entering the lungs by the Epiglottis Flap, but only barely. The professionals said to have the FT reinserted, but I refused. Determined to eat and drink again, I increased the throat and tongue exercises, redlight therapy & continued to eat and drink slowly.
In the end, time is the great healer. Have patience and do a lot of praying for guidance & thankfulness. As for eating and drinking, if you don't use it, you lose it. I thank God I can eat and drink again! As long as your cough reflex is good, any liquids aspirated should be coughed out. Lastly, please check into a redlight wand to wave inside the throat area during your treatment. It is proven beneficial. Take Care.

Hi Lenny. I’m sorry to hear about your diagnosis. I just completed radiation treatment for vocal cord cancer in September. I will tell you that the doctors were upfront about what the side effects would be and they pretty much followed what they predicted. Over the last month and a half I have healed quite a bit. For what it is worth, I would trust the doctors, follow their orders, and work hard at getting well.

I had SCC at the base of my tongue, and I'm a few lymph nodes 3 years ago. I was treated with chemo and proton radiation.

I, too, had some hearing loss and was infused with Carboplatin and Taxol, since Cisplatin could cause deafness. In my case, the chemo was not purely to kill the cancer, but to make the radiation more effective. My understanding is that proton radiation causes a vast amount less damage than photon, so ask about that.

Now to side effects during treatment and after. During treatment, my neck was very "sun burnt" from the radiation but that went away. Starting the fourth week, I couldn't swallow food, so I relied on smoothies to provide the necessary calories and proteins. I also had lymphedema which I used a pneumatic device to treat.

Post-treatment, I suffer from tightness in my neck, loss of some saliva and loss of taste. The tightness is manageable with some stretching. The saliva is not what it used to be, but is not an issue day-to-day issue. For me, the worst side affects has been my taste, it simply never came back which I understand to be very very rare.

Lenny, I wish you the best. Let me know if you want to talk.

Steve

William
I am now in my 3rd week of treatment chemo and radiation for OSCC base of tongue with metastasis to lymph on both side of neck. Treatment is going as planned but I’ve found that eating due to tase buds is problematic has anyone shared recipes for those like me?

I am a 73 year old former smoker and was diagnosed with a tumor above my voice box in August of 2023. I chose the option of Cisplatin Chemo 1 time a week and 35 radiation treatments. The last chemo was November 21st and the last radiation was November 22nd. The last 2 weeks of radiation my voice became very hoarse and my swallowing was extremely difficult. I did a very soft diet and used Ensure and Boost protein drinks to help me. I lost approximately 14 pounds. It has been 2 weeks since my treatments ended and I can finally swallow better and my taste is somewhat returning. My voice is still extremely hoarse though and I don't know what to do to help get it back. I am receiving 2 hours of hydration through my port 1 time a week. I am finally able to get up to around 1300 calories a day between liquids and good and am hoping to increase that daily as my taste returns. How long does it take for my voice to return ?