It's official, I have cancer in my right palatine and lingual tonsil, metastatic to right neck lymph nodes.

<big sigh>

Yesterday's CT scan results only affirmed what I already knew in my heart. Still, hearing the words today took my breath away. Wow.

The docs today gave me two options. Option 1: right tonsillectomy and selective right neck dissection, followed by lesser course of radiation. Option 2: no surgery, intensive radiation. I'm leaning toward surgery with radiation. Have 3rd opinion scheduled for Thursday a.m. and will decide then.

I told my daughter and started calling siblings and friends, we are gonna need some reinforcements on this one. I don't know what else to do right now.....I'm not ready to hold still and think......not yet.

Sorry you have to join the club but you are in good company and the useful people and posts here will help get you through the treatment.

I assume you have been biopsied. Has it been tested for HPV? The prognosis is better for HPV+ tumors. Outside of clinical trials, the treatment is the same.

Has the cancer been staged? (TxNxMx?)

Is any sort of chemotherapy part of either treatment option? I would assume for option 2 it would be included and possibly for option 1, depending on the results of the neck dissection and tonsillectomy. Post surgery, the doctors often have more information on the tumor (ECE, margins, etc) and can refine the treatment (specifically if there will be chemo or not)

I would find out what the difference between more intense radiation and a lesser course of radiation is. I received a lesser dose of radiation to my lymph nodes as part of a clinical trial. The dosage was around 70gy to the tonsil, 60gy to the cancerous lymph nodes and ~50-55gy to the other side of the neck.

Every oncologist I saw told me that trying to keep the amount of treatment modalities I received to 2, would be best for my long term quality of life. Knowing that, I decided on radiation + chemo, as the doctors thought that if I opted for surgery there was a decent chance that I would also need chemo.

It seems to me the trend for HPV+ BOT and tonsil cancer is to bypass the neck dissection and treat with chemoradiation. It seems that HPV+ tumors are more radiosensitive, when compared to HPV- cancers.

Are option 1 and 2 from different cancer centers? Its good you are getting 2nd and 3rd opinions. I went to 4 cancer centers within days before deciding on my treatment.

Mama Ira sorry about the news. It's is a one foot in front of the other situation, educate yourself - get your opinions then push the to move quickly. Hugs - we're here for you

I'm so sorry to learn of your diagnosis. Tonsillar cancer was my second round with oral cancer.

They threw the sink at me. Mine was HPV-negative, which is rare when you don't have any known risk factors.

In my opinion, take the most aggressive treatment that your body can handle. I had bilateral tonsillectomies, followed by 35 radiation treatments, with weekly chemo. Yes, it sucked. I had an excellent support system. Yes, there were a couple of times I thought I would die, but I didn't. Yes, I was hospitalized quite a few times. Yes, I had a feeding tube. Yes, I still have side effects, but they are "doable" and I am alive and just returned to work after nearly a year. I have a lot to live for and I'm assuming you do as well. So, fight! Rely on us and your network that you and your family put together. Get that second opinion and do the next right thing.

I am coming up on my second post-treatment MRI w/contrast. Am I scared? Hell, yes! I hope that the kitchen sink worked and I hope it works for you, too.

Best of luck. Keep us posted. We are here for you.

Love in OCF,
Kerri

Mamacita,

I'm sorry to hear of your Dx. I know that feeling when you hear those words "you have cancer". I too knew but my heart still skipped a beat when I heard the words. Did they mention HPV? If you are positive, it bodes well for treatment.

I had my palatine and lingual tonsils removed along with additional lymph nodes, a minefield of biopsies and they never found the primary tumor. Initially the docs locally were going with rads and chemo only but a 2nd opinion at Johns Hopkins (and subsequent treatment there) was selective neck dissection and lesser rads/chemo (30 rads 6 weekly Cisplatin). Ultimately I feel it was the best decision as the cancer was very aggressive and the tumors were fairly extensive.

Regardless, I won't sugar coat it, treatment is brutal. You'll gain a lot of insight and knowledge from the boards here. It helped me know what to look for and expect. Know this... yes, it's brutal but you'll survive. I'm 9 weeks post Tx and slowly getting better.

Hang tough Mamacita. You got this! Three main things to remember... HYDRATE, NUTRITION and PAIN MANAGEMENT.

Positive thoughts and prayers...

"T"

Sorry for the confirmation. As my doctor said, it's no surprise. Sometimes just knowing where you stand is a relief, instead of the unknown. Now you'll have to decide what treatments, and where you'll be treated is best for you. It sounds like HPV involvement, which most are in the oropharynx. It's responds well to treatment, such as radiation, and even better with chemo. They are doing clinical trials for deesculation of treatment with HPV, Erbitux, and lesser radiation, and say for now that it should not be used outside clinical trials. Its still no walk in the park, and much is still unknown. There also seems to be three sub strains with the HPV-16 virus, which one type seems to be more aggressive, but this is new information. Another fact, and for some reason, failure or recurrence in HPV, in areas not often associated is being seem after 5 year as opposed to non HPV, which failure levels off after two years, which maybe some may consider.

My treatment schedule was for TPF Induction chemo, 3 cycles, which basically will kill all the cancer, followed by 7 weeks Chemoradiation, similar to what Don Foo had. It's not easy, and I only did 5 days lol, and I'm not weak person physically or mentally. Everyone's bodily response is different. I always say, we only hear from the people who are doing or did well, not the ones that didn't, and can say that from personal experience.

There are other matters of concern, which can be discussed one you get settled in, get your 3rd opinion, HPV status, TNM staging.

Good luck.

Let us know what option #3 is. I don't want to speak up until that is known. Do get them to test for HPV.

Andrew, Cheryl, Kerri, FishmanPA/"T", Paul & David -- A thousand thank yous for coming to my side. Your kind words, advice and stories are helping me get grounded for the hurricane on my horizon.

<<HUGS>>

The (serious) options I've been given:

1. TORS Right tonsillectomy and R selective neck dissection, followed by 6-7 weeks of IMRT at UW Madison, a CCC about 2 hours from home. Chemo unikely.

2. IMRT and chemo for 8-10 weeks at UW Madison CCC.

3. IMRT and chemo for 7 weeks at Froedtert/Medical College of WI, 5 minutes from home.

4. Possible clinical trial adding antibodies, both hospitals.

According to both sets of docs, the prognosis is about the same under any option. The key differences are the risks of surgery, short-term side effects and long-term side effects.

Andrew, exactly so -- Info from the surgery and further biopsy would determine whether chemo's needed. I hadn't heard that it's best to go with no more than two treatment types. Do you know why? I will find out the radiation dosages as you suggest. I was biopsied but don't know my HPV status yet and haven't been fully staged. How are you feeling, two months post-treatment?

Cheryl -- You're always among the first w/a warm welcome to newcomers, and so kind --

Kerri, I love your idea of bringing the most aggressive fight my body can handle. That really resonates with me. I don't want to be hospitalized repeatedly, I don't want to feel like I'm going to die, but you have proven that all of that, and more, can be endured.

T, bless you for your honesty. I mean truly I thank you. I'm more afraid of hearing half-truths than I am of hearing the worst. And for some reason your words, "You got this" are stuck in my head and my mantra when fear starts closing in. Our cancers sound so similar. Did yours engage just one side? How did your docs know it was very aggressive?

Paul, you share so much great info so generously. I can hardly sort out the terminology right now, let alone the facts, and you're like an OCF reference desk coming along at just the right moment! I take your story to heart, too, and will be mindful that my "mileage may vary" when it comes to treatment reactions.

David, as I'm telling loved ones about my diagnosis I find myself telling them, "there's a guy who's been through treatment and less than a year later he's back to riding his bike 100 miles a week!". Thank you for the inspiration.

Sorry so long, and sorry so slow -- I had to take a break for a few days and get myself centered.

<<<<More hugs, big embarrassing ones now>>>>

Lynn

[quote=Mamacita]
T, bless you for your honesty. I mean truly I thank you. I'm more afraid of hearing half-truths than I am of hearing the worst. And for some reason your words, "You got this" are stuck in my head and my mantra when fear starts closing in. Our cancers sound so similar. Did yours engage just one side? How did your docs know it was very aggressive?[/quote]


Hi Lynn,

I had an unknown primary. My team feels my body eradicated the original tumor but not before it spread it's joy to my lymph nodes. The PET scan showed the cancer on the left side only. By the time I went to Johns Hopkins for the 2nd opinion, the tumors had grown in size. At Dx (Nov. 30, 2012), they were about 3cm and by the time I went for surgery (Feb 7 2013) they were closer to 5cm. When they went in to remove the tumors they found them to be larger and more invasive than they thought. They had wrapped around the nerves, muscles and blood vessels in my neck thus the trauma to the nerves and subsequent issues with my left shoulder/arm. They came out and let my partner/caregiver know what was going on after three hours as she was expecting me out of surgery. She's been a Godsend through all of this.

The surgery was supposed to be about 3 hours but it took closer to 6 hours due to the intricacy of removing the tumors. They were extracapsular so chemo was necessary. It was TORS to remove my lingual tonsils and biopsies as well as the selective neck dissection.

The end result was positive and my ENT/Surgeon feels he got the cancer. The chemo/rads were essentially a "mop up" operation. I'm going on 10 weeks post Tx and despite some side effect setbacks, I'm doing Ok. Time and patience are key to recovery. It will be frustrating at times but know it will get better. You'll measure your progress in weeks as opposed to days.

Your hurricane analogy is an accurate one as you'll face the front end of the storm during treatment and the back end of the storm during recovery. Make sure you have plenty of water, food and meds. You may lose a few shingles and some siding but you'll make it through.

Remember... "YOU GOT THIS!"

Positive thoughts and prayers

"T"

Lynn,

What type of chemo?

Seven years ago and before I was finally tested positive for HPV post Tx, I too was faced with surgery (2 different plans) plus radiation and chemo or no surgery plus radiation and chemo. I opted for the no surgery approach. Of course I can't compare what I feel like today to what I would have felt like with the surgery options but I don't think I could have asked for a better outcome. If I had to make the same decision today and knowing what we know about HPV now vs 7 years ago I would still make the no surgery decision and I would have pushed for less radiation and a different delivery system to my chemo which was Cisplatin with the 3 Big Bag Method.

Tough decision but make one and don't look back. I hope you get the HPV results before you have to secede though.

[quote=Mamacita]
Andrew, exactly so -- Info from the surgery and further biopsy would determine whether chemo's needed. I hadn't heard that it's best to go with no more than two treatment types. Do you know why? I will find out the radiation dosages as you suggest. I was biopsied but don't know my HPV status yet and haven't been fully staged. How are you feeling, two months post-treatment?
[/quote]

My doctors just recommended trying to stick to a maximum of 2 treatment modalities based on the cumulative side effects. Each of the treatments has different long term side effects and its better to have less of those. Their view of the severity of long term side effects from least severe to most severe was surgery, chemo and radiation. They also told me there is not a survival advantage for having surgery and then radiation vs chemoradiation. For me, they were able to do a PET/CT and the surgeon determined that there was a decent chance that he would not get clean margins on the tonsillectomy. Therefore, if I opted for surgery, there was a decent chance I would need chemo as well.

I think I'm doing really well all things considered but everyone recovers at a different pace. I'm now 13 weeks out of treatment. My first PET is today (fingers crossed), which is why I'm home and able to post. I eat most things and am back to a normal diet. Taste is pretty decent, but fades sometimes with sweet foods. Acidic food is sometimes hard, but a lot of things have been getting better. I can eat pickles, tomatoes and mild salsa (although it feels like picante) which I coudln't eat earlier. I can eat sandwiches and bread (with drinks to accompany it), although its not my favorite food to eat anymore. I guess dry mouth isn't as terrible as I imagined for me, but I still hope for significant improvement. I'm back at work 10-12hrs a day, playing basketball, traveling and back to biking.

Im very sorry for your OC diagnosis! I was hoping you would be negative and not need our group. Since you will be sticking around for a while, we will be here to support you thru this.

Best thing to do is to start making a list, write down every single person who has offered their help to you. Take down their name and number, let them know when the time comes you will let them know what they can do. Even the small things like doing a couple loads of laundry or cooking your family a homemade dinner will be helpful when you arent feeling well.

Im glad to see you are being treated at a CCC. Will you be getting a second opinion at another CCC?

Hang in there! You will get thru this. We will be right in your corner rooting you on the whole way.

i am currently being treated at uw madison--i had surgery -base of tongue resection by robot and selective neck dissection on may 10 --i was back at work may 20--surgery went well with no complications--i started 60 gy of radiation(30 sessions)(no chemo) on june 27(was suppose to start june 25 but machine was broke)--5 treatments in and have experienced typical side effects for this point of treatment of fatigue(mild) and loss of taste--i live and work in madison so i drive myself to treatment--leaving work in an hour for sixth rad--i am not good with these boards but if you want to talk directly, i am sure we can figure out a way