Hello All,

On March 27th I underwent a second neck dissection for a persistent tumor buildup on the left side of my neck. They did a horizontal and vertical incision because there was extra "junk" that needed to be taken out. My surgeon successfully removed all cancer which was seen by the naked eye. I had positive lymph nodes in lvls 2-4 that had extra nodal extension. This is not a recurrence, it was microscopic cancer cells that were there from the start. It's very concerning because it survived through the Chemo-Radiation from last fall.

The tumor board met up 2 weeks following my surgery and were worried about how quick the cancer came back, so they're recommending a 4 month Chemo Treatment Plan which consists of Erbitux and Taxol. The medications will be given through IV once a week for 16 weeks. My other option would be to let it ride and hope that there are not any microscopic cells left behind. It's been 3 weeks since my surgery and they said they would like to get the Chemo going before week 8 post-surgery.

The Chemo Doctor said that if I don't do anymore treatment as of right now... I have a 30% chance of the problem not persisting, and a 70% chance of it coming back. But if I do the 4 month Chemo Treatment he can't statistically let me know how much better my chances are of the cancer not coming back. There's also no guarantee that my bad cells will be responsive to these Chemo-therapies. Keep in mind that one of the possibilities is that I'm already completely cured right now.

This is a tough decision and I would like to hear what all of your opinions are. If you were in my shoes how would you approach this situation? Thank You.

Sorry for your troubles BrandonK. This has happened to me several times. I'm surprised they didn't suggest radiation also, but your prior radiation, less than a year, may factor in. I would say the targeted therapy/chemo combination is better than nothing, but I would seek alternatives, having choices are always good, and select the most extensive treatment anyone can offer due to your history, negative prognoses, like ECE, lower nodal involvement, if it can be done safely, and maybe a 2nd opinion, preferably at a top CCC.

Good Iuck.

Hello Brandon, my approach would be to treat this as aggressively as you can. Your cancer has already proven resistant to both chemo and radiation. You had extra nodal extension. There will almost certainly be microscopic cancer cells remaining. Personally I don't like the odds of 30% likelihood of cure at your current status. As Paul says please get a second opinion from a top CCC.
Thinking of you,
Tammy

Given it came back quickly means your strain of cancer is tough, also being non HPV adds to it being harder to cure.

You are so young it is harder to say give it all they can as you have a long life to live with side effects.

For us older folks, long term QOL is less an issue.

You have a tough choice but you are young so you will bounce back faster than most here.

Get another opinion at a top CCC if you can.

Good luck

Brandon,

I've been in your shoes also, and doing nothing probably isn't a good idea. If you can, seek another opinion at a top cancer center.

Wishing you the best!

Hi, Be has agressive as possible and kill this volture once and for all. Dont take any chances with this. Semper-Fi Bob

I am going to schedule both a 2nd opinion at another CCC in Michigan and speak to a Holistic Doctor in the next upcoming weeks and get back with you all. The last week I've been on vacation so I've been putting as little thought into my situation as possible. But now it's time to take responsibility again starting with cutting out as much sugar as possible. I talked to a Holistic doctor and he said he would like for me to go on a Ketogenic Diet which consists of using good fats for energy instead of a bunch of carbohydrates such as Pizza's, Pasta's, Fruits etc. Looks like I'm going to have to start going green and meats all the way.

So if I were to go this route and try to avoid the chemo... And if the problem does persist, it would occur sometime in the next year or two if any microscopic cells form into another tumor. My chemo doctor said 'he wouldn't think I'm crazy if I were to do that' which I understand I have to be aggressive as possible on the subject. Unfortunately Chemo kills good white cells along with the bad and I'm sure the side effects won't be so friendly.

I have about 3 weeks to decide if I want to start the Chemo so I'll keep you all posted.

Brandon, I understand you are trying to find an alternative to the regular OC treatment. I know how brutal it can be and the long lasting effects it has on your body. I have seen several members attempt to go that route. Unfortunately they realized too late that the only medically proven cures for this horrible disease is the standard treatments of surgery and radiation with or without chemo. PLEASE!!! Be use caution when seeking anything besides the scientifically proven treatments. There are far too many scheming medical "professionals" out there who make false claims and ultimately harm patients who believe in their methods. A special diet can help make you healthier but will never cure cancer. Any doctor who claims it will does not have your best interests in mind.

If you check Quackwatch you will find the diet you mentioned. When something makes the Quackwatch website that means it doesnt work, its another bogus claim.

Quackwatch, Ketogenic Diet

Brandon, I agree strongly with your Chemo Doc.
You have an Aggressive recurrent cancer. If you want to survive this , you must treat it aggressively. Treat it with the treatments that have been proven to work. Surgery coupled with chemo and or radiation . Why would you not listen to the Drs who have huge experience with treating this type of cancer?
Your white cells will recover from the chemo. Hopefully the cancer cells won't.
Will a ketogenic diet help? Absolutely not.
I don't want to read of your demise because you got sucked in by woowoo.
Please ,please, listen to the experts in this.
Tammy

Brandon, in my husband's case, the microscopic cancer cells went straight to his lungs and the doctors found five or six lesions. It did not take a year or two, it took all of six months when they became visible on the CT scan. Prior to that, it could be they were there already but remained undetected because they were microscopic. When a patient has lung metastases, he is already in the palliative stage.
Timely action is extremely important in cancer treatment.

Brandon, have you thought about doing both a medically recommended treatment plan as well as eating a healthy diet? They are not mutually exclusive. Edit: I didn't mean for that to sound sarcastic. I've also been following recommended treatment plans and trying to eat healthy.

I'm glad you're getting a second opinion at a CCC. Best wishes and good luck to you.

Brandon... Holistic is great... do it... but also do the chemo and anything else they offer you... like surgery.

I am a health nut. I am a vegetarian, I minimize carbs, I don't smoke don't drink, I meditate I try to be alkaline. But knowing this disease... I would still take standard treatment and do the holistic thing as well.

My health and diet helped me fare well through treatment, however it didn't stop me from getting cancer.

Take a really good look at Steve Jobs... He believed in holistic treatment and stopped all standard care. He was a brilliant man, but that wasn't a brilliant move. My advice for what it's worth is do whatever you can, because there may come a day that they can't and won't offer you treatment - you need to know you did all you can to fight this.

Hugs.

Brandon,

Please eat healthy and do whatever conventional treatment is offered by your doctors.

If the holistic treatment you speak of was a proven cure it would be all over the news and we wouldn't need the conventional wisdom years of cancer research and trials. This disease is nothing to fool around with. I am begging you to heed your doctors advice.

Brandon,

You haven't checked in for a while, and many of us are wondering what you decided to do. Please update us. Even though you may not have liked the responses you got, please remember we all have your best interest at heart and want you to get well. We will support you no matter what. We do not judge. We do not forget you because you haven't been around. We offer the wisdom of our experiences.

Whatever you decide we will support you. This is your life. You are an adult and can make your own decisions. Those of us who have traveled the road before you want you to be safe, healthy and happy.

We are part of your family now, and will accept any decisions you make.

Please let us know how you are doing.

Virgo,

I apologize for not keeping you all up to date, I was gonna post my final decision after I spoke to U of M this upcoming Thursday. I did however meet again with my main Chemo Doctor on May 12th. He said based off there being no data to support my chances of killing the remaining microscopic cells with further chemotherapy, waiting is not a bad thing and hopefully I can build my immune system strong enough to kill off the remaining bad cells. They said they would monitor me closely by doing a CT scan every 2-3 months instead of every 6. He definitely suggests that I do go get a second opinion.

If I do play the waiting game, and the disease does come back, I would be eligible to undergo new clinical trials that my Cancer Center has been working on called Immunotherapy. That is always an option as well but I will let you guys know my emotions and decision after I speak to a different Chemo Doctor on Thursday. Thank you all for keeping me in your thoughts and of your best interest. And indeed, we are all one big spiritual family!

If there are remaining cancer cells... then you need treatment. You definitely need a second opinion, and they need to do something. The body rarely - if ever - resolves cancer on it's own, you are 22 and this is too big a risk to take. (frankly if you were my son I would have smacked the chemo guy upside the head and made an appointment immediately with someone else. Of the three disciplines involved with this type of cancer chemo has the least effect it's really only used to soften up the tumor for radiation to do more damage, or to try and stabilize the tumor. This is something your rads guy should be looking at, or even your ENT.)

The next stop for cancer - particularly if it is present in the nodes - is the lungs. Once it reaches this stage it's a grim prognosis. Add this to the fact that you are young and have no precursors for this cancer - that's scary my friend (younger people tend to have a more aggressive form of it). I would not walk I would RUN to get another opinion. If you didn't have bilateral radiation initially then that should be the next recourse.

Hugs - I don't want to scare you but your chemo drs wait and see approach is terrifying.

I agree with Cheryl,

I had Perneural, Lymphovascular Invasion, and positve margins, which are microscopic cancer, after a few neck dissections, and additional surgery with intraoperative radiation (IORT), which are good for microscopic cancer, including brachytherapy that is similar, were recommended, in addition too, further IMRT, chemo/targeted therapy, Proton and chemo another time. I was told without such, there was a 70% chance of cancer recurring.

In 2011 I had microscopic cancer, after my first radical neck dissection, in my uninvolved neck muscle of all places, and my ENT recommended chemoradiation, which was not done by my medical and radiation oncologist, different than the above, due to my condition, did result in a recurrence 5 months later.

At one point I was even looking into being on maintenance Erbitux, and then Tarceva, for Chemoprevention, which my two oncologists said no to, but I see so many different trials these days one may qualify for or at least I try to keep up with, just in case.

Every patient and situation is different, and so are the CCC, the doctors and their experience, and I sought out ones I thought best, and woud treat me further.

Good luck with everything.

Hi everyone.
I am writing for my brother Brandon. We went to our 2nd opinion on Thursday at another NCCC. We have two in Michigan. Brandon is being treated at one and the 2nd opinion was at another. The 2nd opinion chemo doctor agreed with Brandon's primary chemo doctor. That he would not recommend chemo as there is no proven study that it would help Brandon. Brandon can be cancer free right now besides the microscopic cancer cells. We asked if he can do a clinical study and they said no because there is no proof that he still has cancer. The doctor said he can offer the chemo but he wouldnt recommend it. He suggested that Brandon gets a second opinion on his previous surgeries. He said it wont hurt to get a second opinion on how his surgeon did. He wasnt saying anything bad about his surgeon but said might as well get another opinion. BRandon will be getting a second opinion on his previous surgeries with a different doctor on Wednesday.

I'm confused.... does he have cancer? or no? The term microscopic cancer... tells me yes. Untreated microscopic cancer turns into full blown cancerous tumors and moves - so... In this case wait and see doesn't cut it with a 22 year old. He needs treatment even if he has to travel to do it.

who said he has microscopic cancer?

As I said previously CHEMO DRS are no good with this type of cancer. By this I mean what they offer will not help him (assuming he still has cancer) Chemo doesn't kill this type of cancer.

Perhaps he should see another surgeon, or go for a second round of radiation depending on where the cancer is located and whether it was in the radiation field last time. There is also proton radiation, clinical trials, intraoperative radiation as Paul said.

Assuming he has a definitive dx of cancer still existing to NOT TREAT IT would be stupid at this point.

He definitely can't sit on this.

My husband's metastasis were caused by microscopic cancer cells traveling into his lungs -- usually a popular destination for these cells. I, too, cannot understand what your doctors are saying. Microscopic cells do not stay put in one location, they travel to other parts of the body. I am not sure Brandon understands this.

Were there clear margins after the second surgery?

Everyone- Im so sorry for the confusion.
At this moment he is cured. The doctors said there is a chance that there is microscopic cells but they don't know. There is a chance that he is completely cured right now.

He does not have a definitive diagnosis of cancer. If he did we would definitely treat it. I even asked if he can do the clinical trials even without a definitive diagnosis and the chemo doctor said no.

He did go to a second opinion with another surgeon and he agreed that the surgeries were done well. Also, the doctor used an ultrasound machine and said things are looking good. All doctors (surgeons and chemo doctors) agreed that Taxol and Erbitux wouldn't really help because there is no studies. Brandon is now a different case because the left side of his neck didn't response to the initial IMRT and Cisplatin.

If God forbid this cancer comes back they will do clinical trials on him.

Okay so he his cancer free is what you're saying? This is good.

Ideally what they do upon discover of this type of cancer - is they perform a hemiglossectomy and dissection at the same time then hit him with the IMRT... which it appears they did though the dissection was done a tad later than the initial surgery. Now as far as I gather this was all to the right side of his neck and tongue.

SO, I am not sure what you mean the left side of his neck not responding to chemo and rads... If there was cancer present there they would have radiated it. It is on the opposite side of the surgery and cancer so it may have been left out of the radiation field. They would have treated only if there was evidence of cancer there.

The assumption is that after the surgery he is for all intents and purposes - cancer free. If he has risk factors for recurrence - the amount of nodal involvement in this case would qualify - then they follow up with rads and chemo.

now assuming there is no cancer there... this is just a precaution type treatment.

If they didn't get clear margins on the dissected tumors/nodes then it's more than merely precautionary.

So- in this instance whatever cancer is left is either eliminated during rads and chemo... (which would make him cancer free) or it's not - which would mean he didn't respond to IMRT and chemo, and still has cancer...

so assuming he is as you said cancer free then he should be monitored every three month

if he is not cancer free - then he needs further treatment ASAP and NOT only chemo as it is not curative.

hope I clarified everything.

hugs.

Cheryl:
Yes, in June of 2014 when he was diagnosed we rushed and he got a partial glossectomy surgery by an ENT doctor. It was NOT at a NCCC. After the pathology report came out he suspected that it spread to the lymph nodes so he wanted to do a neck dissection.

After speaking with you and multiple members on this forum i found out that NCCC are much better and have much better knowledge.

So we then took him to two NCCC and they both recommended that he should do a Right neck dissection, tracheostomy, radial free flap, right tongue dissection surgery. We ended up going with one of the NCCC and the surgery occurred on 8/11/14.

Afterwards, the report revealed that there was 3 positive lymph nodes out of 13 and extranodal exntesion was present. he began IMRT and Cisplatin. This was all for the RIGHT side. HIs neck dissection was for the right side and the positive nodes were on the right side.

THe doctor told us that his left neck did get partial radiation but it wasnt targeted because he didnt have cancer on his left side. In September of 2014 there was no cancer on the left side (at least none that showed up on the scan) .

In March they found cancer on the LEFT side of the neck. He did another neck dissection and they also found positive nodes.

im not understainding this comment " If he has risk factors for recurrence - the amount of nodal involvement in this case would qualify - then they follow up with rads and chemo." im sorry can you please clarify for me?

I thank you for all of your help. I was going through all our olds emails and you have helped so much.

In our old email- I saw that we were chatting 2 days after he was diagnosed and you mentioned that most of the time a hemiglossectomy also needs a neck dissection at the same time. I am so mad at myself because i told the initial doctor everything you told me and he didnt do the neck dissection at the time. I told him that i wanted to go to more opinions and He also told me "well you have to cut the cancer out no matter what. Thats what all doctors will tell you" do you think from June 24,2014 to the August 11,2014 surgery was a lot of wasted time? I ask our doctors that everyday.

Okay thank you that clarified everything. SO...

his left side wasn't targeted during the initial treatment. It was his right. Post treatment it jumped the midline and was found in the left side. Surgery was done. With the number of nodes involved on the left side he should have radiation (and possibly chemo) to the left side.
If the left side wasn't targeted in the initial treatment then its not that it didn't respond, its simply that it didn't get much or any of the rads. There is always a spray radius but that is usually far less than a targeted treatment. So this should be available to him now.

This is a recurrence. having had nodes pop up and salvage surgery on the other side to me is reason one to go through another round of rads, and then the number of nodes involved would also suggest to me that he should have it - even as a precautionary treatment.

PaulB has been through this before and has had numerous radiation treatments. He may be able advise you - but I would continue to push for follow up - multiple nodes tells me this is an aggressive cancer particularly because it jumped to the other side after surgery, radiation and chemo - go for another opinion if you have to. It may be that he has no cancer - but with his history, and age - i would push for the maximum treatment just to be on the safe side.

HUGS.