Hello,
9 Weeks ago I found a large lump on my neck. It showed up overnight. Went to the Doctor and was given Zpak. Did nothing. 2 week later went to different doctor, She gave me another antibotic. Did nothing. Finial my thrid Doctor sent me to the ENT.
ENT did CT scan with contrass Showed nothing. Did a FNA biopsy inconclusive. Sceduled surgery for 8/25. Got my results today. Stage 3 SCC with unknown primary.
Horrible news. Age 43 2 kids 13 and 15 and a wonderful wife.
PET scheduled 9/5 Another surgery 9/12.
What are they going to operate on if nothing has shown? I want conclusive evidence before they cut or a damn good reason. I was a guinea pig 3 times and didn't like it. I didn't know until it was over tho.. Good luck Hockeydad and welcome to our home with a lot of wise people with great info.
Well Hockeye - I'm sure glad you found this place. There is so much of the latest and accurate information available here, plus support from knowledgeable people who have been where you are. As EZJim says, before any surgery is planned for me, I sure would want to know all the reasons why they want to to do it. It's good that you kept pushing to get answers. So many doctors may not be experienced with Oral Cancer so it's really important you find someone with extensive experiences treating cancer patients, and getting second or third or more opinions until you find someone that can give you some straight answers. Your health is important and with your wonderful wife and kids, you have great reasons to keep fighting this thing. I'm sure others will be along with more direct experience relating to yours. So, hang in there and keep checking back so we know what's happening with you.
Dad,
Actually the ENT has saved your life. You do need to run to a CCC and get them to find your Primary which is most likely your tonsils or BOT (base of tongue). They also need to test your cancer slides for the presence of HPV. Read my Signature Line. I am 6 years out and doing just fine except I'm 6 years older!
Hi, HockeyDad
Three cheers for your third doctor! My husband's primary tumor did not show up on the CT scan either, but did on the PET - so that should give you better information. As others have said, make sure they do the evaluation for HPV.
It is very important that you are evaluated and treated by a team that is very familiar with oral cancer. A tumor board (consisting of ENTs, ROs (radiologists), MOs (medical oncologists) and possibly SOs (surgical oncologists) should jointly decide on your course of treatment - not a single doctor. An official Comprehensive Cancer Center probably offers the best environment, but my husband was successfully treated at a public hospital by a team of excellent physicians.
Best wishes and keep us updated.
Maria
David,
What is CCC. Doc said it is likely Tonsils but he could not see anything that looks suspect nor anything on the CT scan.
The surgery is scheduled just to get it in the schedule. I think he going to after what he finds in the PET scan.
I had scc with unknown primary and ent did surgery just to remove some samples from my throat for biopsy. Turned out it was on my tonsil. Fortunately, that little hunting expedition was the only surgery I had. Sounds like that may be what your 2nd surgery will be.
A CCC is a comprehensive cancer center where cancer is all they do. There is a list of CCC's on here somewhere, I think originally posted by davidCPA.
Thanks for all you support. I have been view this forum for the past 2 months. I pretty much knew every word the doctor was going to say. But it was still hard to here.
I will go to the Seidman Cancer Center at University hosiptols in Cleveland. Does anyone have any feed back from them?
Hockeydad,
Many here will tell you to get a second opinion no matter what you think of your current doctor or facility. It is very important for a number of reasons.
The best place to get a second opinion is from a Comprehensive Cancer Center. These are the best of the best in the nation. They have a team approach and have to maintain a very high standard to get this designation.
One of the reasons you will want this as time goes by is Peace of Mind. The last thing you want to find out after your treatment was that there was a much better solution for you that you did not identify. A CCC will be aware of these options.
I highly recommend you get to one and get that second opinion before you make any further decisions. There is a list you can find on the home page here at OCF by typing in the search bar. The nearest one in Ohio is:
Case Comprehensive Cancer Center
Case Western Reserve University
Stanton L. Gerson, M.D.
Director
11100 Euclid Ave., Wearn 151
Cleveland, Ohio 44106-5065
Tel: (216) 844-8562
Fax: (216) 844-4975
Good luck and make sure you get that second opinion.
Hello HD - I too found my cancer through a lump, which they thought was a cyst but turned out to be a malignant lymph node. In fact my first FNA came back negative and it was only when the ENT went in to remove "the cyst" that he knew it was cancer. So I'm going to assume you're getting some kind of modified neck dissection in which they'll remove the cancerous lymph node (assuming that's what it is) and any others they deem suspicious.
Oh and even after what they call a triple endoscopy - this was after my first surgery but before the neck dissection - they never did find the primary tumor. This is not unusual however, so if they never do find yours - which, as my Davidian colleague says is most likely BOT/tonsils/remnant of tonsils (if yours had been removed like mine when I was a kid - I wouldn't lose any sleep over it.
Keep us closely apprised. There are tons of people here who can help you through everything you're facing. Sounds as if your doc is on the ball!
My thoughts are with you.
HockeyDad
What kelly said. I'm alive even and will be even after getting cancer 3 x because I went to Comprehensive Cancer Center.
One bit of practical advice: get yourself a blood test right now to measure your TSH hormone level. You will want the exact number of the TSH so that after treatment, you can compare the TSH levels. The thyroid lab ranges are so large as to be meaningless for an individual (0.40 to 5.00) If you do not have you TSH number now, then you won't be able to get it back to where it needs to be. Maybe you will be lucky and not need thyroid medication but without a pre-treatment number, you will not be able to know. Do not think your oncologist knows what they are talking about in this area. Sad to say, they don't. Word to the wise.
Charm
Thanks for the info.
I had surgery that removed the node 8/24. At that time the doctor did not know it was cancer. However it was large and had to go. The biopsy found cancer.
As for the CCC in Cleveland. Its a little confusing. UH Seidman Cancer Center is part of Univerisity hospitols. It is also affiliated with Case CCC. Case CCC is affiliated with The Cleveland Clinic. All of the web sites are linked to each other. I don't know what to think.
We know exactly where you are and really what you are feeling. My husband was 52 when he was dx. We have 3 kids we had adopted 2 years before. They are now 15,13 and 11. It WAS a terrifying time, but we got through it. He was off work for 6 months but has been back since January.
The surgery they scheduled is probably to find the primary tumor. That was what they did a couple of days after our PET. They found it was BOT and couldn't see anything in any of the scopes. It was also HPV+ which has a much better prognosis.
Hang in there Hockey Dad. You can do this and we will be with you every step of the way. If your wife would like to speak with another caregiver I would be happy to talk to her. It will be overwhelming and her having an outlet is VERY important. I wish I had found this site earlier in our tx, but once I found it I had SO much support.
Keep in touch.
Blessings,
Kathy
Hello, just wanted to chime in and wish you the best.
You probably feel like you've woken up in some sort of horrific parallel universe - I know that's how my brother felt when diagnosed. But you'll get through it.
Post often, because in my experience, no issue is either too big or too small for the forum to offer information and support.
Welcome to OCF! Sorry you are here but glad you found the very best place for up to date correct medical info and support.
I am another member who suggests heading to a cancer center for another opinion. Surgeons cut and if they arent sure whats going on then you dont want things removed that shouldnt be. Its just a good plan to get checked out by a facility which sees many cases of oral cancer and a whole team of professionals will be following the NCI guidelines to make you well.
Cancer Centers At this point you should be seeing a dentist to make sure your teeth are in good shape. They should make a mold just in case you will do radiation, you will need flouride trays made. Get the full blood work done including thyroid. Many of us (including myself) have had their thyroids crap out after going thru cancer treatments. Right now, eat all your favorites and make sure you hit up all your favorite restaurants. Your sense of taste will change for a while and swallowing may become difficult so you want to get all your cravings in now. Every person who offers to help you , write down their name and number and let them know you will call on them when the time comes. This battle is not easy but with help it can be much easier on everyone. Dont be afraid or too proud to ask and accept help from friends and relatives.
Since you mentioned Cleveland, I will be there next week as the speaker for the Cleveland oral cancer awareness walk. It would be great if you and your family would come out. You would get to meet other survivors and get some important info about oral cancer. Plus, oral cancer survivors are free!
Cleveland walk
HD,
I know we're throwing a lot at you but this is a critical time and believe me different docs do different things when it comes to this cancer and not all are necessary and some have unnecessary life altering consequenses. One of these is unnecessary surgery so that's why we are harping on getting a 2nd opinion from a CCC as they see 100's of your presentations a year vs a typical ENT seeing maybe less than 10.
Your presentation is VERY common in the oral cancer world. Finding the painless lump is very often the first clue that we had this cancer growing in our body and because it has already spread from the Primary to a node, it's already Staged a III so like me, you are very fortunate that your ENT persisted otherwise the next spread would have been deadly. Your presentation will probably result in your cancer being positive for HPV which is good in that studies have concluded that HPV+ SCC responds better to existing Tx than HPV- SCC and therefore that chances of a recurrence is less. What they do want to do right now is to try and find your Primary.
Here's my short story. One day, while shaving, I found a totally painless lump in my neck. Totally healthy, never been sick a day in my life except colds, etc. Riding my bike 100 miles a week. Exercise and health nut. I ignored it. A month later it was still there, no bigger? and still painless but I showed it to my wife. She called me every name in the latin book. Got me an appt that day with a doc. He said "don't know what it is BUT it needs to stay." Not satisfied she got me another appt with a neck surgeon. He said "don't know what it is BUT it needs to come out." Wife happy, me not. I told my wife I needed another opinion. Again the latin words poured from her sweet lips. Went to see my neighbor, a MO, who put me on antibiotics. After 2 weeks I came back and HE SHOOK MY HAND AND SAID "CONGRATUATIONS YOU DON"T HAVE CANCER!!" Me really happy, wife very quiet. Not satisfied my wife tricked me into taking her Mom to another ENT who after seeing her Mom turned to me and said I understand I need to look at that lump in your neck. He did an FNA. Two weeks later told me I had SCC and after performing a radical neck dissection I would have chemo and rad and he gave me a 60% chance of surviving 5 years. I fainted. He also told me he would get me in at Moffitt. While waiting for Moffitt, a CCC, I went back to my neighbor MO who said only a partial neck dissection followed by chemo/rad and he gave me a 70% chance. Got in at Moffitt and they said NO surgery just chemo/rad and a 90% survival chance. Who you gonna use? lol Moffitt did put me under to find my primary and luckily it was the first spot they looked at, my BOT.
Moral of story, just don't take the first opinion thrown at you and listen to your wife!
ditto what everyone said and welcome, youR ENT was on the ball and acting in your best interest by booking the surgical date post pet - he wanted to make sure he had the available time. Welcome and best of luck. You'll get through it!
Thanks David 2.
Ours situation looks similar. He already removed the big lymph node. He did not remove anything else. I have a slight discoloration on the left side of tomgue(same side node). 1/4" high 1 in long. But tongues are weird looking any way. Could just be where I bite it. ENT did not think it looked suspicious. He does have several other Oral cancer case right now.
PET Scheduled for Wednesday 5th. He said we have to stage it. Follow up surgery 12th. Biopsy what he sees. Dig at the tonsils (and I still have mine)and try to find something.
Is this fast enough?
When do I contact other parties for second opinions?
Right now all I have is Clear CAT, and Biopsy Left lymph node positive SCC. No primary not PET.
You want a second opinion ASAP. Knowlage is everything in this fight.
I found two cancer treatment center in Cleveland. Cleveland Clinic Taussig Cancer Institued and University Hosipital Seidmen Cancer Center. Both are affiliated with Case western University CCC. My ENT is sending my stuff to UH Seidmen center.
Has any one use these facilities before? I would like to look at both.
All of the Hospitals mostly in Pittsburgh are connected too. Really, they help each other with different cases and give each other good advice.
CCC Comprehensive Cancer Center
Get to one ... Seriously even if it's not that close. People always worry about convenience or taking time away from loved ones, but it's a temporary inconvenience to give you the best shot at a cure. And family would rather miss you 6 weeks than forever. Hugs!
Thanks, UH is a CCC and I will also call the cleveland clinic today. I will get opnions from both.
Tomorrow I have my first pet scan. This is also scary. Sofar all I know is scc poorly defined of unknown origin. After that, I have surgery scheduled for next weds to look for the primary.
Doc did not see any thing and initial cat showed nothing. Is this unusual, or is this typical of theses types of cancer?
So far it looks like bot or tonsil. What am I looking at for treatment?
My husband's tumor was not appearent on the CT. After he had the PET (where it did show up), our ENT went back and from it on the CT - it was not obvious, and was not picked up on the orginal radiologist read.
If you haven't already done so, look at the NCCN treatment guidelines on this site - they will describe the various options:
NCCN Guidelines for Treatment
If it is BOT or tonsil primary and HPV+ then IMO they will recommend concurrent chemo and radiation. Chemo most likely Cisplatin given in either 3 big bags or 6 smaller bags (my preference) and the rad administered daily (no weekends) for 7 weeks with appx 70 gys. If it is tonsil Primary they may take them but usually BOT primaries are left alone. In my case the BOT primary was so small that they thought the biopsy may have taken the whole primary. They told me years later that sometimes the body clears the primary but not before it sheds off to a node wher it is usually discovered first in cases of HPV positive SCC.
Just got out of the pet scan machine. It took about a hour and a half. Bring something to read. I asked for, and they gave me a cd of the scan. I don't think I am going to look at it right now. Maybe in a few weeks. The report should be available later today. Now I have to wait till wed of next week for potential surgery, based on what the scan showed.
Oh, that's great they will have the path report so soon. They are hard to read. Try to talk to your doctor after he has had a chance to look at it.
I called my doc today and discussed pet scan. Small up take BOT/left tonsil. He is not sure which one it is. No other up take in nodes or the rest os the body. He see no reason to change plan to do surgery sept 12 and biopsy BOT left tonsil and what he call common problem area. Doc said mouth will be sore for a couple of days.
I am not happy I have it, but I guess it is better then them. I will keep you posted.
The best to you hockeydad . I pray it all comes out for the best.
Wonderful news that there are no distant mets! You will be able to procede on with your treatment. I don't know if you are a smoker or not - if you are (and are still smoking) you need to quit now (as soon as possible before radiation therapy) for the best chance of a cure.
If your kid's haven't had the HPV vaccine yet, please seriously considered having them vaccinated. I don't know if there is a genetic component involved in being able to clear an HPV infection properly - but we pointed this out to our young adult son when we discussed this with him. He has had two of Gardasil shot, and is scheduled for the third this month.
All the best,
Maria
Thanks I never smoked. My oldest just had his physical. The doc gave us HPV vac info. I will discuss this with everone, but it sure sounds like a good idea right now.
I have another post right now on treatments where we are discussing neck disection. I am looking for BOT or tonsil HPV plus and minus. Please comment if you can.
I would do the nd. You can live without the nodes..
Any unnecessary surgery is well.... just UNNECESSARY!
Great discussion. I would like to add another dimention, time. I am hearing 4 weeks delay in chemo and rad I'd ND is added to the treatment. Mean while the primary keeps doing what ever it does.
I had surgery yesterday to find the primary. He sampled a bunch of other locations. Boy, does my mouth hurt. Doc found very small base of tongue tumor. Samples to lab, HPV will be determined. I hoping it is positive. I find out Tuesday.
I meet my cancer center team Wednesday, University Hospital Siedmen cancer center. Based on the research I done they seem to be the best game in Ohio.
Thanks you all for your advice. I got by Thyroid levels test, teeth cleaned, Still working on flouride trays. Can you think of anything else?
Hearing test. Cisplatin can nuke your hearing. Sounds like it is HPV related. Good luck with your drs. Rinse your mouth frequently with baking soda, water and salt mixed... a tablespoon of each with a 500ml bottle of water. It will help you heal. dont drink it though swish and spit.
Any teeth that arent in good shape need to be pulled now before yo begin treatments. The salt, baking soda and warm water will help your mouth heal. In the US the measurements are 2 tsp salt, 2 tsp baking soda and 16 oz warm water. If it burns alot cut the salt in half.
That is good news, at least I am told it is. How you holding up?
I get my Peg tube and port tomorrow, but still no Big problems eating yet. Just want to be prepared.
Taste and saliva down somewhat. I think this dry mouth is going to be something.... But I see that some people had saliva come back some what...
later
Oh, and ask about what to do about constipation. That hit me first and was/is the worse ever had... The chemo hasn't made be very nauseated but they said not to take laxatives, just stool softeners and then they suggest prune juice... FYI
Greek yogurt with probiotics...
Thank everyone, you are all Angles. I just about recovered from the find Waldo exercise in my mouth Wednesday. The slits on the side of the tongue seem to take the longest to heal. Right now a have a little pressure in my neck but it does not hurt to swollow. I have resorted to sucking on Jolly Rancher all day a work. I also let a few more people at work know my condition. That is not a fun thing to discuss.
Tomorrow (Wed) I meet my RO and MO at UH Seidmen Cancer Center. I am a little scared, but it time to stop the test and wait game, and start the fix. I am hoping they do something tomorrow or at least not make me wait until Monday.
Good luck tomorrow. Let us know!!
Hope everything goes just the way it's supposed to today! Get back to us and let us know how it goes.
Hi Everyone.
Met with MO and RO today. DX St4a TXN2aM0. MO said T1, RO said TX. They said it really does not matter. Both wanted to put me in Trials. HPV+16 43yr health male. But after the physical and exam the cancer was not easily visable so I am not a canidate.
Friday 21 I get my Mask, Oct 1 treatment. 3 big Bags Cisplatin and 35 IMRT with guidance.
Since the primary finding sugery last week my energy levels are not quite where they were before. It this cancer or just OLD?
You are Not Old! I would think it is combo of Cancer and Anxiety and Stress. Sounds like you are doing ok to me.
It's true, anxiety and stress can make anyone feel old. And you are NOT old. You've done so well so far and have every reason for a very successful fight to beat this cancer beast! Anyone with a wonderful wife and two kids can't be old!
i have the exact same treatment plan as you. 3 bags and 35 rads.
i finished my tenth today. talked to a little ole lady on a walker that was walking into her 26th rad today. i felt like a pansie compared to the strentgh she showed. this will be tough. listen to you your body and keep as active as you can. keep up as much nutrition as you can, i've already lost over 20 pounds.
do what you can when you can. rest when you wanna rest.
good luck!
Had my mask made today. The process was easy, only have to remember 1 thing don't move. It looks a little creepy. I am going to ask for that when we are done. I don't know what I am going to do with it but there were some interesting post in the last few days. I might make him into a goalie and let the kids do the rest.
Next Friday they are going to do a dry run. Monday 10/1 start Chemo and Rad. Docs gave me more pills. Zofran and Companzine (no not really but the generic versions of course) for nausa. Also Decadron for Chemo.
Treating cancer is a game of hurry up and wait. Hockey starts tomorrow, first game against Parma OH.
It's yours to keep at the end. I still have mine. Everytime I give a speech on OC I take it with me for the flash effect. The first time they clamed me down I thought my heart was going to pound it's way thru my chest. The first time my wife saw me clamoed to the table she ran out of the room fearing she would faint. Neither of us were prepared like we try and prepare every newbie on this site but somehow we still made it thru.
Hello Hockeydad!
I don't often post, but I do read the forums regularly(almost daily). They have provided wonderful information to us. I will "pay back" all I have received by offering you a bit of knowledge from our "summer to forget." We are a few months ahead of you...treatment ended three weeks ago. Top items to note:
- The treatment is not as bad as you might be lead to believe it will be. My husband had very few side effects. No nausea, minimal pain. We were ahead of the meeds....don't be afraid to take them and do so before the symptoms present themselves. Mouth was a bit sore, as was his neck, but not bad and almost completely healed now
- Ask for ativan. It is used as an anti nausea med, but also reduces anxiety, My husband took half a pill an hour before radiation each day. Took the "edge off".....some days he even had 2-3 ml of liquid oxy with it. Made a big difference
-PEG- Our RO told us that he would not need one and he would be able to eat throughout the treatment. We had done enough research that we wanted to be safe and plan ahead. He told us that we were the first to ever ask for a PEG...usually the patient has to be convinced to get one. My husband ate throughout his treatment, with the exception of about 3-4 days near the end and the entire first week post treamtent. The major benefit we found in using the PEG was the supplemental feeding and hydration it provided. The key to getting through the treatment in good shape is proper hydration and nutrition. It is very difficult to be motivated to eat the amount you have to eat to counteract the amount of calories burned off by the radiation. We used the peg mostly as a supplement to get an extra 1000 or so calories a day. Additionally, we would puta few cups of water in it and let it drip through. The recommendation is to consume 10-12 cups of water a day, which is not easy for a healthy "normal" person. He had the PEG inserted the week before treatment, when he was feeling great and was not chemo compromised at all. He will get it removed in two weeks....happy to have it gone, but glad for the help it provided. And he maintained his weight throughout the treatment.
-Magic Mouthwash - very helpful the last few weeks of treatment....until now. winding down on the usage as his mouth is almost completely healed
-Xylimelts- OTC product that you place in your mouth when you go to sleep. It helps create moisture and eleviate dry mouth while sleeping
-if you don't have a recliner, or a really comfy chair/couch...get one. You will be tired and don't want to be in bed all day
My husband was treated at a top 10 CCC University Medical Center. We had a second opinion from a smaller facility and it was very similar. We live in a large city and had options....and chose the University based on the size of the program and the ability for the MO and RO to specialize in HN. From everything I have read on your posts, your case sounds straightforward and I am sure the teams have seen similar cases and are confident and very experienced.
One other thing to note. Since my husband had robotic surgery to remove the tumor (on his tonsil) as well as a dissection that removed the effected nodes...the radiation did not have to destroy a primary tumor; it was just looking for potential microscopic cells. We met a number of patients while undergoing treatment. Those where the tumor was "attacked" by the radiation seemed to have different side effects.
Wishing you the best in your treatment. The time actually goes very quickiy. You will soon look back on your "autumn to forget" and the next thing will be a festive Hoiliday season. Before you know it!
Our experience on this site is that appx 10% of patients receiving radiation breeze through it like Goodhealthahead's husband and 10% start haveing side effects from day one and end up having a horrible expeience. The remaining 80% suffer from about the 4th week of Tx through the 3rd week of post Tx.
Hi all,
Finally, treatment starts Oct 1, 3BB cisplatin and 35 IMRT. Doc's scheduled Oct 8 until I said why wait. After some proding both docs said we can do Oct 1.
First symptoms 6/20 treatment starts 10/1. I hope this is fast enough. Hopefully cured by Thanksgivigs.
So glad to hear you're getting started; talk about a mixed blessing. You want to get it started so you can get it over with, but the reality of it is terrifying. Ok, so maybe I am projecting my feelings on you, but I (should) start on the 8th, and that's how I am feeling. And good for you for prodding your doctors. Sometimes I think they need some pushback from us!
Good luck HD. Be sure and post throughtout, we can help along the way.