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Radiation or not?

ellkat62
Posts: 5
Joined: Sep 2013

Hello, everyone.  I am a new member of this group.  In July I was diagnosed with tongue cancer.  I had surgery (partial glossectomy) to have the tumor removed.  I then had a functional neck dissection a month later.  Cancer was found in one lymph node.  According to the doctors, my margins were clear and the lymph node was not encapsulated (?) but due to the fact that the surgeon wanted to retain functionality of my tongue (yay) the clear margin was not what they would consider enough.  All my tests have come back clear (PET Scan), yet they still recommend radiation to eliminate any microscopic cancer cells.  Yesterday, I found out they are also recommending carboplatin along with the radiation.  I am really torn.  From my reading on this site and others, it seems this type of cancer eventually returns.  Why go thru six weeks (and more) of hell just to have it return again? Doctors reasoning is I am young (51) and they want to give me the best odds for non recurrance, they are deeply concerned with the borderline margins, etc.  Can anyone offer some feedback on life after radiation to the neck and mouth?  Specifically, life without saliva which I understand is the life long effect this type of radiation as on a person?  

TracyLynn72's picture
TracyLynn72
Posts: 756
Joined: May 2013

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.  

Ladylacy
Posts: 552
Joined: Apr 2012

Sorry that you had to become a member, but welcome.  You will find much information and differring opinions.  The first thing is to remember that everyone is different in how they react and respond to treatment.

When my husband started his treatment for laryngeal cancer 3 years ago we were told up front that radiation on the head and neck is the worse there is and that many people don't complete the radiation.  He did have a time with radiation because it closed off the back of his throat completely and when he had his laryngectomy they had to reconstruct his throat.  Just remember not everyone has this type of problem.  He underwent 35 radiation and 3 chemo (cisplatin) treatments and then ended up having a laryngectomy.  He underwent no further treatments after surgery for over 14 months.  Then a tumor was discovered at the cervical of his esophagus.  Another 35 rounds of radiation and 7 chemo (carboplatin), no surgery.  But 4 months later the tumor was back, much larger, and spread to his right lung.  He has declined further treatment.  So there is no way to say that even with treatment that the cancer will not reoccurr.  Many have been cancer free for years and years, while many have not been so lucky.  

The choice is yours but at 51, my choice would be to go with what your doctors say.  My husband was 73 when first diagnosed.  If you are not sure, get a second and/or third opinion to help you make your decision.  

Wishing you the best -- Sharon

ellkat62
Posts: 5
Joined: Sep 2013

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.

TracyLynn72's picture
TracyLynn72
Posts: 756
Joined: May 2013

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! 

ellkat62
Posts: 5
Joined: Sep 2013

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.

ellkat62
Posts: 5
Joined: Sep 2013

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.

ratface's picture
ratface
Posts: 1259
Joined: Aug 2009

I was torn on how to answer, my first thought was to try it without the radiation, but that thought was fleeting. I was just approaching my 51st birthday when diagnosed with BOT stage 4. I had radiation and cisplatin. Then against my doctors recomendation I had a neck disection for the very same reason you should have the radiation and chemo. It just gives you the best shot at living the longest. That's what the Tumor Board decided and these folks know their business. No matter what they recomend you would still be facing the opposing decision. Staging this cancer is a guess at best. My Oncologist staged everyone MX unknown because recurrence is so high. That said we don't have the highest incidence of recurrence. There are many longterm survivors on this board and many who were not so fortunate. Your fate is unknown, along with the rest of us here. Everything considered, side effects, treatments and recurrence rates this is your most prudent approach.  

phrannie51's picture
phrannie51
Posts: 4003
Joined: Mar 2012

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 Laughing.

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.

debbiejeanne's picture
debbiejeanne
Posts: 2895
Joined: Jan 2010

i agree w/ratface and others.  FIGHT this beast w/every tool u have!  no, it won't be easy, but u can do it.  there are many here who have been thru it and r now called SURVIVORS!!

God bless.

dj

CivilMatt's picture
CivilMatt
Posts: 3263
Joined: May 2012

 

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

 

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

i believe with my whole heart and sole that i would not be here if it was not for radiation and chemo.

certainly i do not want anyone to have to deal with a dry mouth for the rest of their lives, but for it is just part of my new normal. 

not sure how many treatments they are talking but my educated guess is 30. while 30 is bad, i have seen from many others here locally that 30 is not a bad as 35 maybe 38.

with the equipment being used presently compared to 5 plus years ago, the side effects both long and short term are much more controlable. 

i would have to say radiation is a must

john 

Skiffin16's picture
Skiffin16
Posts: 8184
Joined: Sep 2009

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

PJ47's picture
PJ47
Posts: 349
Joined: Sep 2013

This is a very difficult choice many have to make.  Do you know if you are HPV16+, if so it is much more responsive to chemo/radiation from the current literature.

 After surgery, my surgeon 3 weeks ago said my 1  lymph node came out clean and was encapsulated. Had the neck dissection the same day with 22 lymph nodes removed.  Then the path report said the node had extracapsular extension so it looks like radiation will be my next step.

 I have researched several types of radiation and have decided to try the TOMO radiation which is supposed to cause less damage to healthy tissue and cells.  Tomo radiation is available in many areas and I found a place 1 hour away.  Since my SCC T-1 N-1 M-0 is HPV 16+, I have looked at Johns Hopkins Protocols and am asking for fewer rads and targeting only high risk areas (all my tongue margins were clear and there was no evidence of muscle involvement or perineural or perivascular involvement).  My tongue base tumor was small and on one side of the middle(only1.5cm).  I personally will not choose the cis platin due to my auto-immune issues, but may try Erbitux which is a targeted chemo.  Each person who goes through this is an individual and their needs, values, quality of life and the cancer reports all need to be carefully considered.  There is no one size fits all which makes it all the more challanging.  Do your homework and go for what you believe will work best for you.  You most likely will have many wonderful productive years ahead of you.  

One of my neighbors had stage IV SCC (inoperable tongue base tumor) and only had radiation and chemo and his tumor responded well.  He did have to have a peg tube and went locally for the IMRT.  He knew nothing about the TOMO RT.

PJ

Skiffin16's picture
Skiffin16
Posts: 8184
Joined: Sep 2009

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

 

PJ47's picture
PJ47
Posts: 349
Joined: Sep 2013

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

 

Skiffin16's picture
Skiffin16
Posts: 8184
Joined: Sep 2009

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

PJ47's picture
PJ47
Posts: 349
Joined: Sep 2013

Went to meet medicl oncol. today.  He was low key and I liked him.  He wanted to get to know me and what had happened.  He only sees maybe one Head and neck Cancer patient a month and has not seen many with HPV+ but it is not a big city or a place with a teaching hospital so most are generalists here.  Anyway he is recommending so far either the Erbitux or Cisplatin (a lower dose) weekly. He does not believe I need any other forms of chemo and stated he would not give 5FU to me as it creates terrible mucous in the throat and I will already have enough of that to deal with).  Have to now meet with radiation oncol Monday and see what she says.  

Still looking into MDAndersonCaCenter and the proton radiation therapy as well.  They did their first head and neck cancer pt. with tongue base tumor in 2011 and he had no taste bud problems, saliva problems and no feeding tube.  For some odd reason , that is sounding really good to me right about now.  I think there are only about 12-15 proton therapy facilities in the US as they have to be free standing and are fairly new technology.  Do now know if anyone on this site has had it done. 

 

Glad you survived all the treatments you had and came out fine.

PJ

dunedintech's picture
dunedintech
Posts: 71
Joined: Apr 2013

Hello  - Welcome to the family. My story is very similiar in that I had a SCC on my tongue removed along with a neck dissection. One node was infected out of the 30 removed thus the chemo / radio treatment (6 weeks of radio and 3 x doses of Cisplatin) Was it tough? Yes. Did I lose salivia? Yes. Could I eat / swallow in the midst of the treatment? It was challanging. Would I do it again? Yes. The treatment is designed to blast any remmants / micro cells floating around. By doing the treatment now I feel I have given myself the best chance of non recurrance. Make no bones about it, the treatment is tough but doable as shown by the comments on this site. My treatment finsihed April 9 and my salivia is coming back nicely, I can eat most things, albiet slowly. The neck burn is fading along with the dissection scar. I am back excercising regulary and things are slowly coming back to normal! Well, a new normal perhaps. Good luck with your decision making and stay healthy.

ellkat62
Posts: 5
Joined: Sep 2013

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. 

Bart T
Posts: 27
Joined: Mar 2013

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)

hwt's picture
hwt
Posts: 2141
Joined: Jun 2012

Personally, I didn't have a choice of rads or not. A year ago, I would have been sitting on the fence thinking "why go thru tx now, if you have a recurrance, you could do it then". 

Speaking from experience and currently dealing with a recurrance from some microscopic cells, even after having IMRT, I encourage you to do it!  Seems things can get rearranged during surgery and my recurrance ended up in the carotid cavity which is very rare. Pathology reports have it coming from the primary SCC site in my jaw. This area did not get the full dose of grays with the original radiation but did get a fair amount. I was 15 months post when I got the dx and have to think with radiation, those microsocpic cells were held at bay while I went on living life. Mine is now in an inoperable spot with concerns that it may now be resistant to rads. I had SBRT direct target radiation at Mayo Clinic and won't have results until December. 

Prayers that you make the right decision for yourself.

PJ47's picture
PJ47
Posts: 349
Joined: Sep 2013

So sorry you had a recurrence, and pray the SBRT will work.  Do not know if you will need any other treatment but Proton IMPT or Gamma knife could be explored if you have not done so already.  Take care,

PJ

PJ47's picture
PJ47
Posts: 349
Joined: Sep 2013

I think you need not apologize for your feelings about radiation and the long term effects.  I do believe quality of life is important.  There is a new post from someone who had radiation in 2007 and now cannot swallow from the scar tissue and has to have a feeding tube now.  Any treatments are not without risks/benefits and need to be carefully considered.  Thank you for your input.

PJ

lornal's picture
lornal
Posts: 327
Joined: Sep 2013

I'm the one getting the feeding tube on Monday - 6 years after treatment for tonsil cancer. The side affects, even this far out are a pain. But to quote my ENT after going through all the treatment..

"At least you're here to ***** about it".

I take those words to heart, and do complain, grateful that I can complain. Radiation is hard.  I actually took meds before each treatment to calm me down (on a scale of 1 to 10, I am a 12 when it comes to clastrophobia) I pretty much stepped out of life for a number of months.  My husband did everything, and took care of me too. But, I got back to work about 3-4 months after treatment ended - with the aid of anit-depressants - and am still working.

 

hwt's picture
hwt
Posts: 2141
Joined: Jun 2012

Thanks...looks like you have done allot of research. Gammaknife was not an option for me because the new tumor was too low below the brain for the beams to reach. The docs at Mayo consulted with docs at MDA that also had all of my records in case proton therapy was the best option. When all was said and done, they agreed there was no obvious benefit to choosing proton therapy over SBRT. Yes, the beams stop at tumor opposed to quickly dropping off but there are no long term results yet w/proton therapy on a tumor such as mine. With SBRT taking 5 days and proton therapy taking 7 weeks and neither available at home, they felt good about SBRT and I respected their decision. I have been told that this spot can not be done again but if I had another isolated tumor in another spot it could be repeated. I did have a biopsy at Mayo that was amazing. It was CT guided and they went in my cheek next to my lip and worked their way back more than 4 inches to the carotid cavity passing some very important nerves, jugular and carotid artery. They wanted to make certain it was SCC from the original primary and it was. Two days later when i went to change the bandage at entry site, it was so smalll that I couldn't even find it to put a new bandage on. Side effects from the SBRT were very minimal.  

PJ47's picture
PJ47
Posts: 349
Joined: Sep 2013

Sounds like you received excellent care.  Wishing the best for you,

PJ

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