Lymph node cancer- treatment options - need suggestions

swopoe said:

My husband had radiation and

My husband had radiation and chemo last year for tongue cancer, and his sense of taste has returned. He sees his dentist every 3 months, and so far no problems with his teeth either. But he didn't have jaw bone removed. Can I ask if you had chemo and rads the first time around or just surgery?

I just had surgery!  This will be the frst time I'll go through chemo and radiation.   I thought I'd be ok with the surgery part since I did ok with it the first go around but this possible cutting and moving of the pec muscle sounds like it's a bit of overkill especially when I can just do chemo and radiation alone at a different treatment facility.  The other doctors that are recommending just chemo and radiation were saying that they would radiate my entire neck (ear to ear) and then focus alot of the radiation on the tip of my jar.  I got the second opion from Moffitt because I'm terrified of the long term side effects of the radiation and my jaw bone.

Drivingdaisy said:

FLA Cancer Specialist

Who have You talked with there?  I am in Sarasota & have My Chemo Dr there.  Between Dr Lunin ( Fla Cancer Specialists) & My Rad Dr at 21st  Onocolgy they pursed My Throat somewhat more gentle.  No surgery, less envasive Rad/Chemo combo ( still a ****) last yr & was diagnosed NED all yr.  Do you have HPV 16 +?  I got excellent results with a back-up plan, just in case.  So If you want to talk message Me, I will do the best to help.  Hugs, Lisa

Hi Lisa,

Mine is SCC.  I was talking with Dr Melchert and Dr Kahn, the radiologist in Fla Cancer Specialists/Tampa Bay Radiation Oncology in Brandon/Tampa.  Dr Kahn stated he'd just radiate me from ear to ear and focus alot of the radiation on my chin where the infected lymph nodes are.  It's the long term radiation impact that really worries me.  I know I'm in for it either way but I'd like to lessen my exposure as much as possible.  Moffit says I could just do radiation and chemo but the radaition treatments would be two weeks longer without surgery.  They (Moffitt Cancer Center) feel surgery, chemo, rads treatment gives me the best chances of getting rid of this.

Drivingdaisy said:

Hi Matt

Hey Matt.... So sorry just sent Private Message.  Stupid Chemo Brain here will follow-up with Dr reference 2nd opinion.  My Radiologist I feel is excellent at 21st Onocology, Sarasota.  Dr Larry Silverman (941) 364-8887.  Your Radiation Dr I feel key to this.  My Chemo Dr is at FCS here in Sarasota, Downton Office.  Dr Lunin (941) 957-1000. Both were highly recommended by My ENT, Silverstein Institute, Sarasota, Neuro/Back Surgeon, Internists.  May want to discuss with them.  Would be easy to view your records.  2nd opinion always good idea.  I did NOT go with Moffit since did not hear all that much Positive other than for Prostrate Cancer, even then often would promote surgery.  Since We live so close I will message you my phone #, if you wan to talk furture.  I understand that you want the best quality of life especially at your age tho I am only 10 yrs older in body but not always in mind.  I take cancer seriously but....... I want to live MY life to the best of my ability.  For Me it is " Quality Not Quanity".  I am also a Rescue & Rehab Foster here in Sarasota.....is that a Pittie With you in the picture?  Love Me some Pitties.  I have 3  Rescues of My own, just lost our 4th bit guy this past yr.  Hard, was in the beginning of Recovery.  PS, Was your Cancer ever tested for HPV 16+ ?  That is another key to all this.  It is becoming a major factor for so many, & often a cause for re-occurrence.    Very important to find out.

I got your PM.  Thank You.   

I've heard good things about the H&N radiologist at Moffitt.  I agree with you about quality not quanity!  I considered not doing anything and just travelling but every doctor I spoke with said it would be a horrible way to go.  I've talked to doctors at Florida Cancer Specialts, UF Proton Institue in Jacksonville (no benefit for me they said) and I did the round table with all the doctors I would deal with at Moffitt.  Although I think its going to be the roughest route, I've decided on going with Moffitt: surgery, chemo and rads.  My doctors there feel confident that this could get rid of it!  Praying!

Yes that's my red nose pittie- he's a shelter dog and my best friend.  I couldn't ask for a better dog.

My doctor only said mine was SCC when I asked.  I'll inquire about the possibilty of HPV+ too.

cbeaz4626 said:

I understand....completely

I'm 47 too and was diagnosed with SCC in my tongue last year (March).  Surgery was to remove 1/2 of my tongue, a skin graft from my forearm to replace what they removed, skin graft from my leg to cover my arm, a trach tube, a feeding tube then an infection in the graft on my arm led to another surgery and a final surgery to remove all of my teeth to prepare for radiation/chemo.  It was very overwhelming.  

Chemo and radiation I did at the same time, chemo once a week and radiation 5 days a week.  They are both rough.  Not trying to discourage you just telling my story.  For me, I wanted to know what to expect and I didn't want to hear it was rainbows and butterflies and find out it was much worse.  Surgery was tough.  Lots of swelling and obviously you feel uncomfortable because someone has been cutting on you.  The pain from that to me was manageable and frankly got a little better every day so I felt like I was moving forward.

 The chemo/radiaton was a little different and worked in the opposite way.....it got worse as the days went on not better.  I got sick immediately with chemo and other people not sick at all.  Typically, I got chemo on Monday at 9 am and was throwing up and sick by Monday at 11 am while I was still getting the chemo.  My nausea lasted most of the week.  I would highly recommend asking them to schedule you for extra IV fluids if you are experencing a lot of nausea.  It helped me a great deal.  

Radiation was a different story.  The first thing they did was make a stint (a hard plastic mold of your mouth) that I had to hold in my mouth to keep my lower jaw in the radiation field and my upper jaw out of it.  You had to hold still in the tube with this God awful thing in your mouth and swallowing with it in was impossible)

 As radiation progresses you can start experencing a lot of mucus (sorry its gross but its what I dealt with) my throat also became pretty raw so I was constantly spitting all of this extra fluid into tissues...I kept the kleenex companines in business.  Holding still for the radiation was tough feeling like I was going to choke on all the mucus.  Further, they bolt you to the radiation table and have you wear a mesh mask to help them pin point the same area every time.  At first it was a bit disconcerting but after a while you get used to it.  My people played really good music during treatment so I did what I could to focus on the music and try to "escape" for a while.  I learned the sounds of the machine so well that I could tell when it was getting close to ending.....I imagine you will do the same.  

I was glad that I got the feeding tube.  There was a time when I could swallow absolutely NOTHING, not even water.  Blisters will form in your mouth, throat, tongue and esophogus during radiation and stay for weeks/months afterward.  They WILL eventually go away but had I not had the feeding tube it would have been really hungry.  I had weight to lose before all this happened and throughout this process I lost 90lbs.  I still have the tube but I have not used it in quite some time.  Dry mouth came about 2 months post radiation.  It was sudden.  I constantly have water and I use biotene spray at night.  It does tend to wake me a few times a night but it's manageable.  All of this is manageable but thats not to say I haven't gotten down right pissed at the situation what what I've had to go through.  You'll hear people say "new normal" alot.  I hated it at first but it is true.  You will get back to being you eventually but you will be a stronger you.  Going through what we with head and neck cancer go through makes you realize you have strength that you didn't know you had.  It's brutal and we've all gotten through it one day at a time.  My taste has not fully returned.  I dont taste much "sweet" and certain things will taste fine one day but not the next.  Something as mild as cinnamon burns my throat now so I avoid anything with any sort of spice.  

If it were me, I would have the surgery....it sounds invasive but I would not want to chance it by only doing chemo radiation.  This group helps.  Come here and ask all your questions!  Hang in there, you got this!

I mostly drink smoothies as I still dont have teeth but hopefully that will be over with soon.  

Thank you for your brutal honesty!  I'm sorry to hear what you've been through.  After hearing your experience I'm ashamed to be asking "why me?". 

I'm glad to hear you would go with the surgery as well.  I've been questioning this decision over and over.  I go in today for "pre-op" for a Tues surgery.  I'm exhausted already and I haven't even begun.