Radiation or not?

I had a stage II Mucoepidermoid tumor in my lower left jaw.  They removed it along with some teeth and a section of my jawbone.  It did not produce clear path results.  They went right back in and took more of my jawbone, including my left hinge, and the final path was clean.  No nodes involved as they removed 21.  I had the all clear and no cancer left in me.  The worry was microscopic cells as the first report was not clear.  They suggested 30 rads and I did it.  It wasn't easy on me but I did all 30.  The wonderful people on this site were very kind and encouraging and truly understood what I was going through.  I would suggest doing whatever the doctors recommend.  I'm not familiar with your particular type of cancer, but I know someone on here will have some better insight and will chime in.  I was ready to give up and quit, but someone on here told me that I needed to push through and do EVERYTHING in my power to make sure this disease was gone. I can look back now and say that I truly did everything I could.  I'm out of treatment and cancer free 3 months now.  I never had much of a dry mouth...it effects everyone differently....I actually drooled a lot.  My mouth is VERY dry now when I sleep but once I get up, brush, and rinse, I'm fine.  I lost my taste buds after a week, so eating was the hardest part for me.  I ended up with a PEG and it saved my life and was honestly no big deal to get, use or have removed. The worst part of the after effects so far is the waking up very dry, taste buds coming back slowly and differently and the fact that I have 4 cavities that I didn't have before rads.  Compared to everything else...those aren't too bad to deal with! I wish you the best and hope that someone can chime in about your type of cancer and recurrence, but I'd definitely go with whatever gave me the best odds.  

nobody wants to join.  You have found the BEST forum on the internet, tho....the folks here are super supportive, and very smart....they will help you get through treatment if you decide to follow through.

Myself....I wanted it gone, and did not want to see it back so decided to go with the full on attack....chemo and rads....and then more chemo after rads were done.  I can only imagine where all you've been doing  your "reading"....I know you surely couldn't have picked up that "it usually comes back" on this forum....there are many, many people here who are years out of treatment.  Nobody knows who is going to get a recurrance.....or how long it might be if that happens.....but one thing for sure the chances are with full treatment a recurrance is way down the road, and probably not in 6 months, a year.....or two years.....the chances of that happening with no further treatment are far far higher.

The fact that the node was not encapsulated means there could be cells traveling your lymph node hiway.....It simply does not make sense to me to not take advantage of every thing out there to eradicate it and get on with your life.  You are young....you have a lot of life to live still....this is just a 6 month bump in the road.....a little gravel on the hiway of life.....at the end of the six months you'll be back on pavement, and sailing off into the sunset.

I have about 50% of my saliva back....my taste buds aren't what they used to be, but other than that I'm back doing all the things I ever did, and more.  The only thing different I guess, is that I eat to live, rather than live to eat.....and that is a good thing .

Trust your Drs. when it comes to treatment.........trust us on how to get through that treatment in best possible way....we're always here.

p 

ellkat62 said:

Oh my, I feel like such a

Oh my, I feel like such a wimp compared to what others have been through.    My cancer is SCC T2N1M0, the tumor was located on the oral tongue extending just enough into the base to warrant the neck dissection and all other recommendations.  Although it is considered Stage III, it was caught fairly early.  Hence, my doubts regarding radiation and chemo.  I know the doctors know best and I am pushing forward with those treatments, I just waffle every now and then.  This whole think came on so sudden, and seems so overwhelming and I haven't even started treatment yet.  Thank you for your responses. My thoughts and prayers are with both of you.

you are a wimp!  Absolutely not!  We all fight, and we fight together...with each other and for each other.  I was overwhelmed and said I was DONE with only 6 more treatments to go.  I had given up.  All I needed was a good kick in the butt and a PEG.  I got both and finished strong.  Keep posting, keep reading on here and keep going strong.  We are all here to push you onward and to support each other! 

I think you have derived some flawed info somewhere.....

Especially the part where you mention that, "it seems that this type of cancer eventually returns"...

That is not the case at all..., actually very few here have had a recurrence or new cancer pop up..., a few yes, but by the numbers, it's very low.

As others mention, myself and trusting my MD's, I'm going to do what they suggest..., especially if there are any doubts of not completely killing the cancer and any free floaters...

Hit me once, hit me hard... If I have to go through it again, I will... But give it all up to me initially...

I also had seven weeks of carboplatin weekly during rads... That chemo is actually one of the better choices given with rads as they interact for a more effective treatment.

Another misconception of yours, life long effect of no saliva..., doesn't happen.

It may not be exactly as pre Tx, but in most cases (eventually) it returns to pretty darn much as before. Myself and others have nearly all of our saliva and taste back. I had a huge portion back within 6-8 months. But it took all of 2 years to completely have my taste return, and around 95% of my saliva.

Each of us are different, react, respond and heal differently... But most all of us have had the majority of everything return to pre-Tx...

Of course there are a few that have had complications both during and after rads..., you may, or you might not...

Your MD's are recommending the things you mention and have concerns with becasue they work, and are proven.

John

ellkat62,

Welcome to the H&N forum, so sorry you find yourself in this conundrum of choices.

If treated successfully, the cancer will be gone, never to return (not eventually).

I had  around 5 weeks (week 8 minus week 3) of intense side effects, to hopefully have the cancer not return.

While my saliva and taste are diminished, they are still both improving, be it slowly.  I am light years away from week 8 post.  Patience is the H&N mantra (or should be).

Discussions of playing the odds are common place within the walls of the H&N forum.  Most of us have chosen to double down and take the battle to the cancer.  This crap is insidious and the further removed from it the better.

 Since I have 20/20 hindsight and you do not (yet), I would chose treatment all over again.

Matt

Skiffin16 said:

Self Choices and Research...

PJ, I am in no way questioning your decisons, and the pro-active roll that you have taken toward your own treatment.

 

But I do hope that you also consider what your MD's decide is best for you as they are the trained professionals. I can't help but to question things you mention such as Cisplatin and the auto-immune system..., something that I haven't heard mention of before, so not sure what you are referring.

Another, such as a less agressive approach due to HPV derived cancer... Yes, though it does "supposedly" respond to treatment a little better, (I've never heard "much better"). I haven't read anywhere that there are studies to back this up, or I would presume less aggressive protoculs would currently be used. From everything that I have seen either from others here, or my own internet researching..., pretty much everyone gets a similar treatment plan, HPV or not.

I certainly wouldn't want to take a lesser approach that what is recommended or the standard at this time.

As for Erbitux, while it is used in conjunction with radiation, I actually don't think it is classified as a type of chemo (though I could be wrong). Myself I did have nine weeks of Cisplatin, Taxotere and 5FU, then seven doses of Carboplatin with radiation as it too works best with radiation...

I think Erbitux is used a lot and very successfully with recurrence of H&N cancer, but not soley... It also has a slew of possible side effects as all of these cancer killers do.

Anyways..., just my take as I had a similar Dx as yourself, I presume yours is STGIII/IV had the chemos and IMRT radiation, and have very little long term side effects... I do have a thyroid that is going south, but has hung in there for over four years post Tx, and a little dry mouth during sleep.

 

Again, different approaches, reactions, recoveries and results... We are all different...

Best,

John

 

Hey there,

I am certainly willing to consider what MD's recommend.  I do know my own body best however, and  persons with auto immune diseases and compromised immune systems do not fare well with cis platin, carboplatin, 5fu etc. which will attack healthy cells.  Targeted therapy such as Erbitux certainly does have side effects but not as severe as other drugs and attacks the cancer cells.  That is where I am coming from and there are many studies and atricles stating that HPV+ responds better to chemo/rad than SCC HPV-.  

I figure Hopkins and several other places that are experienced with IMRT would not suggest using lesser GY doses unless the individual's cancers fit this type of protocol.

The current trial at Hopkins is being conducted by Dr. Harry Quan, is called "dintensification of radiation..."

Again one size does not fit all persons with this illness.  Take care,

PJ

PJ47 said:

Hey there,
 
I am certainly

Hey there,

 

I am certainly willing to consider what MD's recommend.  I do know my own body best however, and  persons with auto immune diseases and compromised immune systems do not fare well with cis platin, carboplatin, 5fu etc. which will attack healthy cells.  Targeted therapy such as Erbitux certainly does have side effects but not as severe as other drugs and attacks the cancer cells.  That is where I am coming from and there are many studies and atricles stating that HPV+ responds better to chemo/rad than SCC HPV-.  

I figure Hopkins and several other places that are experienced with IMRT would not suggest using lesser GY doses unless the individual's cancers fit this type of protocol.

The current trial at Hopkins is being conducted by Dr. Harry Quan, is called "dintensification of radiation..."

Again one size does not fit all persons with this illness.  Take care,

PJ

 

I have no problem what so ever with your personal approach.. And I definitely agree that one knows their body better than anyone. Not so much that I'm saying I know what is better for myself in terms of treatment for cancer than those trained professionally and with experience.

I wouldn't consider (myself) a trial as a first line treatment when there are proven ones out there.

With your particular scenario, a lesser approach may be warranted having other things going on with your immune system. You are a little different than the majority of survivors here in that respect. As a whole, not everyone has something going on, and for the most part one size actually does come pretty close to fitting all... Each of us have some form of either surgery, chemo or radiation, or some variant of a combination of those. 

That chemo is usuallu or a high percentage also of Cisplatin, Taxatere, 5FU, Carboplatin, a few others and as you said Erbitux and if radiation most have had IMRT, but with current trends and technolgy other more precise and potentially less damaging forms of radiation are now being used.

But that is what makes us all different and agree that one size does not fit all.

Best of luck to you, and for a successful treatment and long life ahead of you.

John

ellkat62 said:

Thank you, this is what I

Thank you, this is what I needed to hear.  I think I just got a bit scared.  The doctors keep mentioning the saliva problem which cause dry mouth, dental decay, trouble swallowing, etc.  It seemed overwhelming.  I have already told my docs that I would proceed with their recommendations, but daily I seem to waiver.  I realize that for myself and my family I need to do whatever is necessary to give myself the best chance to get rid of this.  My rad/chemo treatment has not started yet.  I have had the dental eval, the meeting with the med doc, and am now waiting to hear from rad doc to get the go ahead.  The waiting just makes me overthink things.  Oh btw, in this thread, I was asked if I was HPV positive.  I am not.  I am not a drinker, smoker, nor HPV+ which are all the "main" causes of oral cancer.  Again, thank you all for your comments. 

Without a doubt the most difficult decision I ever made had to do with my post-surgery treatment. Our cancers and treatment seem very similar. Mine was along one side of the mid tongue area. I had a hemi-glossectomy and neck dissection on one side with 41 lymph nodes removed. Post-surgically, everything looked clear, and my surgeon basically felt I could go either way on the radiation issue. He felt I had fairly good odds without the radiation, but that the radiation would give me even better odds. 

I opted for the radiation. I had the surgery early in May 2012, started the radiation mid-June 2012, and finished the radiation 7/30/12. Prior to the radiation I was just about fully recovered from the surgery when I started the radiation. I went through the radiation, and if it was simply a matter of enduring the radiation followed by a modest recovery period, I say it was a no brainer to have the radiation; but the effects are much more substantial than the period of treatment. 

Obviously, I’m alive to **** about how I feel, and many would consider that a victory. Compared to some on this board, my experience with radiation was a walk in the park. I never needed a feeding tube, never had to be hospitalized, never got all messed up with pain killers, etc. A little over a year out from radiation, everything is all clear. I can honestly tell people that from my neck down, everything is as good as it used to be, but realize that is a bit like telling Mrs. Lincoln “other than that one incident, it was an excellent play.”

 My quality of life has deteriorated substantially. Some would say that in the scheme of things, my ongoing complaints are trivial, and they might not be wrong, but they are my complaints, and it’s my life, and I’m the only one who could decide if the things that bother me are significant enough to detract from the quality of my life. Just last week, I had one of my follow-up visits, and the doctor felt that everything continues to look good, but he also said that most of the improvement takes place over the first year, and I could expect little or no additional improvement with regard to my current complaints.

 I’m sorry that I’m not a cheerleader for radiation and aggressive treatment. I’m not certain what decision I’d make today, but I would have changed two things about my decision process. First, I would have had a consultation with a cancer specialist who was not a radiation specialist. I do not doubt the integrity or qualifications of my radiation doctor, but if you want an unbiased opinion if you need a haircut, don’t ask a barber.

 The other thing I would have done, is more research into the specifics of a decision to not do the radiation. It seemed logical to fight cancer like a general fights a war, but while generals do win wars, they don’t usually win peace.

 Either way you go with your decision, the only certainty is that there will always be uncertainty. I’m frankly not at peace with my choice. If I didn’t have the radiation and the cancer returned, I’d be even less at peace with the choice of not having the radiation. Whichever way you go, I wish you nothing but the best, and hope that you will always be at peace with your choice. (FYI, I am a 60 year old male, was not a smoker, drinker or HPV+, and was in excellent health prior to my diagnosis)