Squamous Cell Carcinoma of the tonsil

Hi, I can't help with your decision, but I did want to let you know that I had proton beam radiation treatment at UC Davis in October and they were excellent. I know this isn't much, I guess I just wanted you to feel more at ease on where your getting treatment. Everyone was very kind and professional.

My message may find you after you have already elected y9ur course fo treatment. Similar to 'dave cr's comments, I too was dianosed with tonsil cancer which spread to the adjecent lymph node and muslce structure (stage3). I'm a 43 year old white male and a diagnoses that doe not fit my life style. I'll leave it at that - I have cancer, which is what I must know face. My diagnosis began with finding of an enlagered lymph node on the right side of my neck just beneath my jaw bone. With out this enlarged lymph noe, I had no outward (or inward) signs of having cancer, just caught up in work/familiy and the craziness of life. This discovery occurred in Nov. '02 and it has been a whrilwind of activities since. So I can fully understand where you are at right now.

The first decision, an operation is the most difficult, but may also be the most significant in saving your life. In January I had my right tonsil removed for biopsy, followed 2-weeks to the date by a radical neck dissection to remove the lymph nodes and muscle structure on the right side. Both operations wented very smoothly and the recover time was exactly as the doctors stated. In your case, a radical jaw, I have heard quite positive results. Reconstruction surgery will be more difficult to heal, but the benefits are that the cancer they have found will be removed, bettering you survival rate. Combine this along with both Musclur and Speech pysical therapy should also be considered. I too am on a feeding tube, a pain, but you'll learn to need them once you can no longer swallow...more on this later. I would recommend you have the standard tests; Blood tests, CT-scan, X-rays and PET test. In my case the PET test showed additional areas of cancer growth not visibe on the either tests. This should be part of your diagnosise/treatment planning phase. Since my cancer was beyond the original site, I was also given the option of both chemo/radiation treatments. I agreed with the treatment plan, Chemo 1x per week, and 32 Radiation treatments. During Chemo I was administered Cisplatin, along with anti-nausea drugs, steriods, etc. My radition consisted on multiple passes which took upwards of 45 minutes + to complete. I am now in my 7th week of treatent, just completed my Chemo and have 2 more Radiation visits. Almost done with this phase. Ohhh... I call them phases, the first is having cancer - dealing with it emotionally and mentally. Followed by diagnosis/treatment planning - complete confusion unless your willing to do some reading and read some web-sites. Phase three is treament, in my case, following the first week, 90% of food intake by mouth stops and you resort to tube feedings. I'll have to let you know where the later Phases goes.

Issues -
Chemo/Radiation - skin burning, sore throat, reduced fod intake, sleeping disorders, 'constant pain' in the throart area.

All of these can be releived if you tell the doctor!!! I used to take on vitamin each day - pre cancer, now I have the most medication in my family of five.

Surgery -
Appearence - get over it....you are alive!!!!
Physical mobility - loss of body/muscle movement - get into a physical therapy course following surgery healing time to identify what needs work - your surgeon should have a good feeling for what was removed/damaged. Then return after cancer treatment- I could not manage both during treatment.

Limitation -
Understand that you will have limitations, accept them, compensate as needed for them. But never let them get beat you!

Lifestyle -

As treatment progresses you will be 'very fatigued'. It is hard to explain, but, there will be days when you can't even get out of bed or the rocking chair. Let your body be the judge!
In my case, the day after Chemo I feel great (thaks to the drugs they give you), but the 2nd and 3rd day after treatment - I can barely move.

Okay ....enough for know...hope this little bit helped!

My DR. From M.D. Anderson said there wouldn't be any thing to remove after radiation and Cemo. and I am a stage 3-4 SCC on the Left Tonsil involving the 1st lymph node. Have you any ideas how you got this cancer?
Looking to the future,
Gene Rice
Grice3333@aol.com

davecr said:

I had SCC with the primary in my left tonsil which had spread to the lymph nodes in my neck. I was lucky in that the primary cancer was contained in the tonsil so a tonsilectomy was my first surgery. I opted for the combined chemo and radiation because the tumor in my neck was large and fast-growing. I had a neck dissection after the radiation where they removed many lymph nodes and the big muscle (sternocleidomastoid) on one side. The whole treatment took about 6 months and was very difficult. I lost about 45 pounds, went bald, and could eat only liquids because of the awful sores in my mouth. OK -- I know all that sounds scary but it was 2 years ago and I'm fine, now. I've gained back nost of the weight (I don't really need the last few pounds), my hair grew back and I'm coping well with the few remaining problems like low saliva production. Every cancer is different so no one can tell you exactly what to expect but the available treatments can work. The important thing is to get all the information you can, including second and third opinions, and get on with the treatment. Get emotional support from wherever you can find it -- I would not have made it through without my family.

Stay strong and good luck!

David
david@crispinfo.com

David, your case sounds very similar to my recent diagnosis. It is encouraging to know that it is a battle that can be won. I go tomorrow for a PET scan to see if the cancer is anywhere else besides the tonsil remnant. How long ago did you say that you were first diagnosed and had surgery? I am so worried that I will be a burden to my family during my recovery period.

robh said:

Gene,

I am a 41yo male with that was just diagnosed with the SCC. Lump on my neck and swollen tonsil. Doctor did surgury 09/02 to remove lump and found that my tonsil was the primary cancer site. I have stage pT1pN2B Pm0. Wich is stage IVA. I am going for the neck resection Wed 09/08. I was told by the path report that the cancer did not leave the inked margins on the tonsil so it looks like they got it all. I will be consulting with University of Chicago, Northwestern, Highland Park (Kellog), and Evanston hospital to determain the best course of action for Chemo,Rad. I have a wonderful Surgen/ENT from Highland Park. I would strongly recomend him. For the other treatments I will consult others for piece of mind however. I have 4 children under the age of ten and another on the way. Death is not an option for me!!!!!!!

I know this will be a long road but I am ready. My doc says I have better then average odds.You must keep a positive outlook and firmly beleive that this is nothing more then a setback. I hope everything works out for you.
If any other survivors could give me advise I would greatly appreciate it.

Thanks,
Robert Hamilton

Hey, you made it 15 years. Good job. Your rock. life is normal. Interesting. My kids are now all adults and my unborn is now 14. WOW am I lucky. I love life, I love my family. So glad this went well. Great job Bob.

Newly diagnosed...............

I'm 56 yrs old. I VERY recently was diagnosed with squamous cell carcinoma of the tonsil. I had a CAT scan and a PET scan. Both scans were clear and showed no spreading. My HPV test came back positive this past Friday. I spoke to the radiation oncologist this morning (the day after the PET scan) and I'm waiting on a call-back from my ENT specialist/surgeon. I was presented with the choice of initially having surgery (in the hopes of avoiding radiation/chemo) while being warned that I may STILL have to have radiation and chemo after surgery. Of course the other choice is to begin treatment with radiation and chemo while being warned that I may STILL have to have surgery later. I'm in a TOTAL quandry as to what to do. My radiation Doc told me that in my shoes he's not sure as to what path he would start with. So..............I'm STILL waiting to speak to my ENT to get her perspective and insight. At the moment I feel like I'm gradually coming unhinged as I ponder all of this. What should/could I expect from sugery? From radiation? I've been told that the surgery is painful and the recovery is rather long. I was told that I wouldn't notice any affects from the radiation for the first 2 weeks but then it would begin to REALLY suck. Can anyone who has been through this PLEASE give me some insights! thank you.

 

MoreThan9Lives in Baltimore

MoreThan9Lives said:

Newly diagnosed...............

I'm 56 yrs old. I VERY recently was diagnosed with squamous cell carcinoma of the tonsil. I had a CAT scan and a PET scan. Both scans were clear and showed no spreading. My HPV test came back positive this past Friday. I spoke to the radiation oncologist this morning (the day after the PET scan) and I'm waiting on a call-back from my ENT specialist/surgeon. I was presented with the choice of initially having surgery (in the hopes of avoiding radiation/chemo) while being warned that I may STILL have to have radiation and chemo after surgery. Of course the other choice is to begin treatment with radiation and chemo while being warned that I may STILL have to have surgery later. I'm in a TOTAL quandry as to what to do. My radiation Doc told me that in my shoes he's not sure as to what path he would start with. So..............I'm STILL waiting to speak to my ENT to get her perspective and insight. At the moment I feel like I'm gradually coming unhinged as I ponder all of this. What should/could I expect from sugery? From radiation? I've been told that the surgery is painful and the recovery is rather long. I was told that I wouldn't notice any affects from the radiation for the first 2 weeks but then it would begin to REALLY suck. Can anyone who has been through this PLEASE give me some insights! thank you.

 

MoreThan9Lives in Baltimore

It's relative, isn't it?
I was SCC, HPV+, stage IVb. It had spread to one lymph node, but was very large on the tonsil spreading toward the base of my tongue. This was Sept. of 2016. I asked the ENT to cut it out. He told me he couldn't because he could not get clear margins. It had just gone too far. He told me that fortunately the HPV-type responded well to radiation and sent me to an oncologist and radio-oncologist.

I was told I was going to take 7 infusions of chemo (Cisplatin) once a week and 35 radiation treatments (five days a week).

Please hear what I am saying. This isn't just a cliche: Everyone is different. There are people here who had big trouble and others who had no trouble at all.

I asked for the peg (feeding tube) before we started treatment and they wouldn't let me have it. They insisted that I made a good effort at keeping my weight up without a tube.

In my case I strutted around for the first five weeks. I wondered what the big deal was about chemo and radiation. I felt a little funny, but I felt fine.

Week six? Not-so-much strutting. They couldn't give me the Cisplatin that week. By this time I was having trouble because my saliva production was pretty-much gone. I was getting uncomfortable. I had gone to drinking all of my calories by this time as foods, one by one, became nasty to taste and really hard to swallow (not because my "swallow" mechanism was affected, but because of the condition of my throat - raw). No chemo week seven, either. My bone marrow couldn't take it. I was told that this often happened and not to worry.

Yeah, right. I worried. ...not that worry did me any good.

I lived on Ensure for a long time (weeks) and it felt like longer, but I was getting 2,100 calories per day and although my weight dropped about 30-35 lbs (15% of my body weight) I was never in "need" of a feeding tube and didn't get one. I did ask for and received IV fluids several times when drinking the Ensure was about all I could do. Part of this time even water tasted awful. That's the chemo talking to you.

The doctors gave me prescriptions for pain medications (I never took even one pill for pain), the doctors gave me the equivalent of xanax and of some anti-depressant and I never took that, either. I did use "magic mouthwash" a few times. Only a few. It helped a lot. There was never a time that my throat hurt worse than the worst case of strep I ever had. But, in fairness, the pain was different and more general. The mouthwash would put out the fire immediately.

I used the computer to "read out loud" (like Stephen Hawking) to other people for a couple of weeks. I could talk, I just preferred not-to.

When I finished my last radiation treatment the radio-oncologist says to me, "Now you can go home and curse me for the next couple of weeks." I did not understand that comment, but do now. It gets WORSE after the treatments stop.

Sounds scary.

It's not as bad as your imagination is making it. Yes, there are some weeks that are just... a challenge. There were individual days that were just awful (after the treatments ended, mostly) I had a few times when I would say, out-loud to myself, "Do you want to live? Drink the Ensure. Do it." I had a routine and it wasn't always pretty. BUT--- there was never a time that I couldn't drive myself to therapy. There was never a time when I needed help getting to the bathroom. There was never a time when I couldn't stand-up.

When I was weakest I still walked about 3/4 of a mile for exercise (in the cold). I would do 1.5 - 3 miles most of the time.

My voice was almost always normal although there were a few weeks when I just couldn't talk a lot.

YOU will react differently. You will have your own story. It will be whatever it is and you will make it through and get to tell someone else how much it really stinks to have to go through the treatment. It really, really probably isn't as bad as you imagine. I only missed a few days of work (admittedly, I stare at a computer for most of the day and could handle things via email).

Here I am, 20 months from diagnosis: Clear PET scans so far, good exams so far. I don't taste things like I used to. I carry a water bottle with me a lot because I still don't really make saliva. I eat bacon (it smells good) and eggs (the salt and pepper are nice) every morning. I had vegetable beef soup and a grilled deli ham sandwich with aged Swiss cheese for dinner. I have dug the holes for and planted 25 knock-out rose bushes in the past few days after working all day (and four oleander and five crepe myrtles, too). I had a short rib in a restaurant the other day and sometimes a taste will surprise me (I may be getting more ability to taste back).

There was a time in all of this when walking down to my mailbox was a challenge and water tasted metallic.

Cancer treatment is *not* for wimps. However, I was pretty wimpy about it and pulled through (so far). My labs are still a little bothersome and I have to do a lymphedema massage to my neck every night (not a big deal), but I'm sure I am doing remarkably well (so far).

My point is that you don't have to be superman to get through this.

They told me chemo and radiation first and THEN if anything was left he would try to get it surgically. So far, nothing has popped back up, but I was a stage IVb and, well, I'm happy to have every day I get. Will it show back up? Sometimes it does, sometimes it doesn't and I eat my Wheaties and take my vitamins and eat lots of green leafy vegetables and pray I get to die of something else much, much later (I am currently 58).

But I got to see a daughter get into medical school and another graduate from college with so many honors cords she was stooped-over! I get to sing old Rolling Stones songs in my car (along with the radio), too. Every ability I retain is appreciated and every day is a gift! I've been on several driving trips and can eat fast food (when I must) although... things like overdone lean chicken... that's really, really hard to swallow even with a milkshake.

Before I got going, I was pretty unhinged. I was pretty sure I was going to die and nobody was going to be able to do anything for me. I didn't fear being dead as much as being sick for a long time and being dependent and having problem after problem like...maybe a coyote snout was going to grow from my underarm, or maybe my leg would fall-off, or maybe I couldn't eat and they'd give me a feeding tube and then make me pour pureed goat's liver and the eye of newt down the tube and I'd taste it...

None of my worst fears happened.

If I told you "it's always easy!" I'd run the risk of spending eternity in Hell for being such a liar.

MoreThan9Lives said:

Newly diagnosed...............

I'm 56 yrs old. I VERY recently was diagnosed with squamous cell carcinoma of the tonsil. I had a CAT scan and a PET scan. Both scans were clear and showed no spreading. My HPV test came back positive this past Friday. I spoke to the radiation oncologist this morning (the day after the PET scan) and I'm waiting on a call-back from my ENT specialist/surgeon. I was presented with the choice of initially having surgery (in the hopes of avoiding radiation/chemo) while being warned that I may STILL have to have radiation and chemo after surgery. Of course the other choice is to begin treatment with radiation and chemo while being warned that I may STILL have to have surgery later. I'm in a TOTAL quandry as to what to do. My radiation Doc told me that in my shoes he's not sure as to what path he would start with. So..............I'm STILL waiting to speak to my ENT to get her perspective and insight. At the moment I feel like I'm gradually coming unhinged as I ponder all of this. What should/could I expect from sugery? From radiation? I've been told that the surgery is painful and the recovery is rather long. I was told that I wouldn't notice any affects from the radiation for the first 2 weeks but then it would begin to REALLY suck. Can anyone who has been through this PLEASE give me some insights! thank you.

 

MoreThan9Lives in Baltimore

Morethan9lives

My diagnosis was HPV+, source unknown. They did surgery to see if they could find where it started (they were unsuccessful), and to remove one enlarged, cancerous lymph node, and several adjacent ones to see if they were cancerous (they weren't). Because of the results from the surgery they determined I would only need 6 weeks of radiation and not 7, and I would not need chemo (yeah!). The surgery was painful but I was sent home after one night in the hospital. I was supposed to be off work 2 weeks but only missed 3 days. As everyone says, everyone is different. I am in week 4 of radiation and have not experienced (yet) the harsh side effects others on this board have had to endure (thank you Lord). For me, the surgery first was worth it.

Good Luck!

MoreThan9Lives said:

Newly diagnosed...............

I'm 56 yrs old. I VERY recently was diagnosed with squamous cell carcinoma of the tonsil. I had a CAT scan and a PET scan. Both scans were clear and showed no spreading. My HPV test came back positive this past Friday. I spoke to the radiation oncologist this morning (the day after the PET scan) and I'm waiting on a call-back from my ENT specialist/surgeon. I was presented with the choice of initially having surgery (in the hopes of avoiding radiation/chemo) while being warned that I may STILL have to have radiation and chemo after surgery. Of course the other choice is to begin treatment with radiation and chemo while being warned that I may STILL have to have surgery later. I'm in a TOTAL quandry as to what to do. My radiation Doc told me that in my shoes he's not sure as to what path he would start with. So..............I'm STILL waiting to speak to my ENT to get her perspective and insight. At the moment I feel like I'm gradually coming unhinged as I ponder all of this. What should/could I expect from sugery? From radiation? I've been told that the surgery is painful and the recovery is rather long. I was told that I wouldn't notice any affects from the radiation for the first 2 weeks but then it would begin to REALLY suck. Can anyone who has been through this PLEASE give me some insights! thank you.

 

MoreThan9Lives in Baltimore

What did you decide on? My

What did you decide on? My dad was recently dianosed with HPV tonsil cancer. Although, they removed his tonsil and were 99% sure they removed all the cancer. He chose to still do radiation. He's 3 weeks in and miserable!! Sores in his throat, no taste, can't eat, can barely swallow. Its tough. Im wondering if he made the right decision now. 

 

MindOverMatter said:

Radiation First - Possibly no surgery

Hi,

  I was diagnosed with stage 1 SCC HPV+ (16) in my left tonsil.  I had a PET scan done and it came back that is was just in the left tonsil, no lymph nodes or anywere else.  My ENT recommended just doing the treatment instead of having the tonsil removed first as you have to wait for the surgery to heal before you can start the radiation treatment and he wanted to get that going right away.  Although on my visit to the ent he did cut off a big growth in my tonsil and that was what was sent in to be biopsied. My Oncology Radiologist also said once the radiation is done there might not be anything left  to remove.  Also because I was stage 1 one and not spread to lymph nodes they recommened that I didn't need chemo.  I am currently in my 5th week of treatment and it is rough. Can't eat much solid food because of mouth sores, so I drink veggie protein shakes.  I tried the normal boost VHC shakes but then found out I was milk protein intolerant and had to stop.  So as you can see from mine and whoisjohngalt stories that there are different recommendations.  Maybe ask you Dr.'s to explain why one would be better than the other for you?

Good Luck.

Mind over matter

How you doing? Any advise you can give me.  I had a tonsillectomy both tonsil removed and one lymph node removed.  Cancer was in one lymph node and one tonsil only.  Pet scan showed no cancer at the time of starting radiation so chemo was Canceled.  The surgery was a barbaric surgery and it was a terrible recovery.  Today was my first day of radiation and I’m looking to see if anyone has any advice out there you can email me <Content Removed by CSN Support Team>.

 Thank you for your support