Bad news. The bump on my neck that I thought was Lymphedema was found to be more cancer. I had a needle biopsy and a ct scan . havent got results from scan yet so I dont know how far its spread. I am in shock. I just got back to work Monday. I am 2 months out of surgery.

sorry for that bad news...but you are a fighter, you can fight some more. What kind of surgery did you have? Did you have a neck dissection ?

Hi there - it's sucky news big time, but Ingrid's right you are a fighter, I'm not sure the extent of what has been done to you though you indicate surgery and rads two years ago. I'm assuming despite the fact that you're HPV positive, that's not the cause of your tumors, as you were also a smoker and location is usually a good indicator, (was it base of tongue, tonsil, or oropharyngeal? That's usually HPV related) regardless, you can get through this. They can radiate.... Again, or surgically remove the nodes in your neck. I can't remember where you said you were being treated but get to a ccc if you're not there... Hugs.l
We're with you through this.

I am so sorry you must go thru this yet again!!!! Ive had it 3 times in 3 years. I know exactly how you feel! Everytime you get better and move on it comes back. Cancer sure has a way of forcing itself into your life, even when it doesnt belong there.

I hope you are going to a cancer center where they have the most experience in treating this. At least this time you know the terminology and have your doctors lined up which is half the battle. They should have also caught it very very early due to having regular check ups. So if you must worry, at least remember the positives of it. Plus this time around you have OCF for correct medical info and support.

Im in your corner, please just ask if you have any questions. Best wishes!!!

Oh no. Having just been and still recovering from the treatment for a reoccurrence ourselves , I know that this is gut wrenching news.
Shout and scream some. Cry. Then face it head on. Push for the best treatment to deal with this. Gather your support crew around. Fight.
I truly hope the scan shows no or minimal spread. I am in your corner , thinking and keeping you in my prayers,
Tammy

I realize my signature is confusing. Heres a quick rundown. I was 1st diagnosed 2 years ago with a sore on my left cheek and my left gum. There was some lymph node involvement. I had surgery and then radiation. One year later I have tumor behind my left jawbone and more lymph node involvement. Had 6 weeks of chemo then surgery where they removed my left jawbone. They took tissue from my right thigh I found the spot in my throat last week, wasnt too concerned, thought it was Lymphedema but had it checked out . They did a needle biopsy and a CT scan. Sure enough biopsy showed cancer. Havent got results back from scan so I dont know how far this has gone.I should find out tomorrow.

I am so sorry you need to go thru this again!!!! Your history starts out just like mine! We are both 3X survivors. This is the first time I have ever run into anyone who had it in the same areas as I did. My first round was a tumor in the middle of my left cheek and also up behind my top left molar. I was very lucky and have never had any lymph nodes involved.

I noticed your signature says you are HPV16+. Was this in your original tumors? Or was this found in the 2nd round or all 3? Sorry I am just trying to learn more about the HPV+ diagnosis. Ive never seen a HPV+ patient have a recurrence, let alone 3 of them. Usually HPV+ patientss have OC show up in the base of their tongue or in their throat and recurrence is rare..

I wish you all the very best with everything you are going thru right now. It must have been a terrible shock to you to hear you had OC again. I hope it is in its earliest stages and will be very simple to remove. Im also hoping you will recover very quickly and be without pain. Im in your corner so please remember you have me to lean on if you need to. Best wishes!

Just want to say that Kris's base of tongue cancer was HPV positive.
Yet he too has had a reoccurrence.

Was Kris's 2nd round also HPV+? From what I understand about HPV, its something that can come and go.

CT scan shows it hasnt spread to my lungs and seems to be just at the lump in my throat, I will be meeting with Chemo docs and possibly radiation.

So that is positive news! Glad it has not gone into your lungs! There are several here who have done rads twice. Its not easy and you did it before so you know how it goes. But this time around you know what to avoid and know how important nutrition and hydration are to getting thru it easier. If you need to go thru rads again, you can do it!!!! This time around you have OCF behind you.

Hi Christine. Im praying I only have to do Chemo so I can still keep working. My FMLA is all used up and I have pretty much used up my lifes savings.Man..I did not expect this again so soon. Hopefully 3 times the charm!!

Hi Christine,
I'm assuming that this reoccurrence is also HPV+. The reoccurrence was also Base of Tongue, so in exactly the same site. I guess that although Kris had a clear PET last June, there must have been a few cells remaining that were not killed off by the radiation and Cisplatin. It was a small localized reoccurrence and not as large as the original tumour. Although his surgery was done on the original tumour margins. Guess we are one of the unlucky ones.
Tammy

Plant girl as far as I know chemo alone isn't very effective against OC - push for more... Maybe a combination of chemos? Hug - so glad I not in your lungs!!!

Are you being treated at a cancer center? Have your doctors suggested chemo would be the only thing necessary to cure this recurrence? What about a second opinion?

Im seeing docs Monday. I dont know what I will be doing yet. Ill let you all know.

Im being treated at UNC cancer hospital in Chapel Hill NC

UNC should be a good place - they are highly regarded and have a good many clinical trials going. However, getting a second opinion is not a bad idea, either. If you don't have the information already, you may want to ask about having some of the some of the additional biomarkers - besides HPV - that might provide a more information on what course to take next. Hope that things go well on Monday.

Hello, Plantgirl.

I haven't consistently been on the forums for a few weeks, now, so I am just learning of your recurrence. I am so sorry that you are going through this at all, let alone for the third time! Like others have said, I am so grateful that it is localized.

I did not have chemo/rads, so I can only go by what I have learned through OCF, but it seems that rads is what KILLS the cancer and the chemo prevents or slows down the spread while you are getting treatment. Someone here, correct me if I'm wrong.

My advise to you, other than getting a second opinion (this is your life), is to write down all of your questions and get them all answered. Keep a notebook handy at all times so that when a question arises, you can jot it down while it's fresh in your mind.

I give you my best wishes in this battle. I will be holding you close in my heart.

With great care,
Kerri

As it stands now, if the labs and EKG are ok, I will be in a clinical trial for the chemo drugs Capecitabine and Lapatinib. They are FDA approved for breast cancer but they have very good results for patients with OC. Ill have to take 2 pills a day (no IV yay!!!)
and see the Dr every 3 weeks. The side effects are not at all bad so I should be able to continue working. Like I said this all depends on my tests so Im praying. It really seems like the best option for me as I cannot do any more radiation to that side. If at any time they find the cancer not responding or spreading I will have more options. What do you guys think?

Please go to a cancer center for a second opinion. I cant stress this enough! I have not heard of either one of these chemos being effective with oral cancer. That does not mean they wont work, just I havent heard of them. For oral cancer, chemo is normally used for palliative care not used alone as a cure. Here is detailed info about it from the main OCF pages. Please take the time to read this important info, it could make a huge difference in your choice of treatment.

Palliative Care from main OCF pages

If it were me, I would run as fast as possible to the best NCI cancer center I could get to.

OC resources including NCI CCC list

Best wishes with everything!!!!

I cant have any more radiation to my left side. My cancer is very aggresive and probably will come back again. I am trying to get a 2nd opinion at Duke next week. A big big part of my decision is financial. I just do not have anything left from my savings and Ive used up all my FMLA I actually went over by 3 weeks and I was so lucky my employer hired me back. If I dont have insurance I wont be able to get any treatments and I will lose my house if I dont have a job. it really sucks that its all about money but that is how it is.

Plantgirl

From your signature line, it appears you have about 40 IMRT treatments. I'm guessing up to about 70-77 GY. Which is why radiologists not familiar with the latest studies keep telling OCF members about having the "maximum" and no more radiation can be done. Except that it's not always true. I had 40 radiation treatments entirely on my left side and 72 GY. When the cancer came back, my ENT pushed the radiologist who then used CyberKnife to give me yet another whopping 25 GY, this time 5GY at a shot for a week to nuke the cells that survived the salvage surgery. He admitted that I was the first one he had done this for, but it's been almost 3 years and I do not glow in the dark. Seriously, ask your doctors about CyberKnife or the other focused variants.
Charm

Thanks Charm I will. Im actually seeing my rad doc on Monday.

The financial aspect of battling a serious disease is a terrible decision to make. I am very sorry to hear about your situation. Please check out the above links. There may be places for you to get some help. The American Cancer Society will give cancer patients help of up to $300 towards medications or travel. They even have volunteer drives (I am one) who can drive you to treatments, just call and sign up. Check out local churches and organizations, there could be some programs you may qualify for. I wish you all the very best with everything you are facing.

I do know of several patients who have done rads more than once. Its not an easy road but every one of them is currently doing ok. I think they have all been given a smaller dose of rads the second time around.

Good luck with everything!!!

So sorry to hear this. Will keep you in my thoughts and will be cheering you on. You can do this. You've got to do this. Be strong and when you get weary, that's where the troops here come in.

Do you have a good support team with you? I hope so.

Ditto what Rita said.. Though I've responded before!

I saw my Radiation Dr today. He is one doctor who has always been up front and honest about my cancer and treatments. He told me that radiation would probably do me more harm than good right now. My cancer is going to keep coming back. I asked him to give me a straight answer on how much time I have. His answer was 6 months to a year. He also said he hates to tell patients that because you never know. I am trying to come to grips with this. I know shouldnt give up hope and I am still getting a 2nd opinion from an oncologist not affiliated with this hospital on Thursday.I also had some tests done today for the clinical trial EKG another CT and blood work. I will most likely be starting that chemo next week.

Place don't give up! He does not know what will happen. He can only give you an educated guess. Definitely get a second opinion, what you have at this point is sounds like it is NOT terminal - don't let it become that way. Chemo may hold it at bay but isn't considered a cure!

I have a friend who has a rare cancer - peritoneal - it was stage four - this cancer there is no cure for it, she went through treatment at a local hospital and went into remission it came back ithin 2 mos. second time out she had a reaction to the chemo, they switched her to an old one, the tumor grew and spread. Her dr. Said go home, you have maybe 6 mos. use your pain pills you'll need them. I told her to switch from our local hospital to the top center in Canada (an extra 20 minutes away) they put her on another chemo, and a trial drug, as of a month ago, there was a 27% shrinkage in her tumor.

They do not know ! Hugs.

Thanks Cheryl. I am going to Duke on Thursday.Where Ive been treated (UNC)has a very respected cancer program so I feel like Ive been treated well up till this point. I am not ready to die just yet and I will not give up.

Im very sorry to hear your doctors findings! Dont give up hoping!!! Best wishes with your upcoming appointment Thursday. Gather all your records and take them with you so the doctor has a good history and can hopefully come up with an alternative plan.

That's awesome... I know MD anderson has an exceptional program for head and neck cancers. There are members here who've done radiation twice. They're s till living life in a big way. I'm so glad you're not ready to give up. Sometimes it's about the surgeon, or trying something new. hugs... you'll get through this. ;o)

Not good news todays appointment.Pretty much same story. Radiation not advised.
Clinical trial people called . Tests that I had the other day show I have an
infection so I wont be able to start chemo until its cleared up. I have to say it seems like Im not going to catch a break. Im praying it will be over soon. Thank you all for being there for me.

I'm so sorry to hear this. You will certainly be in my prayers!

Im very sorry the second opinion wasnt more hopeful. Wish you didnt have to go thru fighting an infection before you can begin your treatments. Keeping you in my thoughts and prayers.

Best wishes!!!

I'm sorry - this really sucks - I wish I had suggestions I know if the financial burden were lifted it would likely be an easier decision to make - it should never come down to money as you should be allowed to get the best care possible. Maybe another opinion? fingers crossed your infection clears up. Hugs!

It doesnt really matter about money anymore. I dont think theres anything they can do anymore anyway. Hopefully this chemo trial will make some of the pain better

I'm so sorry. There really are no words that we can say to make this better. Only you know what you can tolerate and when you have had enough. I can't remember, you aren't doing this alone, right?
Please keep in touch with us.
Kathy

I'm a fight to the end kind of girl - I want to tell you to push for a second round of rads. There area few here who've done it along with salvage surgery - and they're still here kicking up a fuss. I told a story a wild back..l may have told it to you... But I'll repeat it... A friend of mine has peritoneal cancer - its incurable, only marginally controllable with chemo, her first round shrunk the tumor, her recurrence was quick, second time around they changed chemos and she had a reaction, so they switched her to a 1970s chemo, because the one they wanted to give her wasn't available (thank you money grubbing pharmaceutical companies) her tumor grew and spread. Her dr. Pretty much told her go home and die. And to take her pain meds as she was going to need them.

She didn't listen - she took my advice and went to my ccc - they switched her chemo put her on a trial drug, and now the tumor has shrunk by 27% -

To me it sounds like you're still in Position to fight and win. There are those here that have done the three time recurrence. Hugs... I totally respect any decision you make, but please despite the fact that it seems useless, you never know - take care.

Thanks Kathy and Cheryl. Hopefully they will find my white blood cell count higher and Ill be able to start the trial next week. I go in for blood work Monday. Ill keep you posted. I didnt mean to sound like Ive given up..I just am having a hard time being optimistic lately. Im a tough old lady..I can take it. Just need to whine sometimes!