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I am not a text book case!

NitaNita's picture
NitaNita
Posts: 56
Joined: May 2012

Hello friends! How have you all been? I have been doing really good. My ENT sent me to an Oncologist just because I am not the normal person they see with tongue cancer. I have never drank or smoked, I am not HPV positive, and I am 35 years old. He wanted him to be able to have it written down for studies. Oncologist then says he thinks because I am not a text book case even though I have NO cancer and it wasnt in the lymph nodes I should still have radiation and chemo to prevent it from coming back. I thought long and hard and decided I am not going to do that to my body when I am cancer free at the moment. His reasoning was I am not like the others and he cant say if it would or wouldn't come back.

I talked to the ENT and he also feels it is unnecessary. He said they will be doing scopes and regular check ups every 6 weeks on top of pet scans and my trips to the dentist every 4 mo. He feels I have enough people watching me to make sure they catch it if it was to come back and then treat as needed.They honestly think it was caused by to much trama to the tongue by a reoccuring sore and then biting my tongue in that spot over and over again for over a month. What are your thoughts? I don't see why someone would want you to put poison in your body and put someone through all that if you are okay. I know one thing I have learned through all this...ALWAYS GET A SECOND OPINION!!!

I have been praying for you all and in my thoughts daily!

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

My story starts out similar to yours. A little over 5 years ago I was diagnosed with carcinoma in situ on my vocal cords. I've never smoked, very very rarely drink and am HPV negative. My ENT surgeon felt that I too was a rare case. Oh and I was 39 at the time. We removed the spot and watched very closely(monthly) with videostrobes, CT scans every 6months for the first 3 years and then yearly after that. I did have to have several spots removed after that but always the margians were clean and it never went beyond in situ. About half way thru the 5years the surgeon ref me to an oncologist who told me it was up to me but I could do chemo and rads and most likely never have to deal with this again or deal with it turning to SCC. He said however, if I were his wife or family member he would hold off and just continue to watch it as chemo and rads are extreme in a "maybe" situation. My surgeon agreed so we kept on the path of monthly check ups and scopes and CT's knowing full well that it could turn into more but with our constant check ups we'd catch it early and treatment would work well. Needless to say, I felt something wasn't right at about the 5year mark so we moved my CT from September all the way up to March. Sure enough we found another growth. This time the biopsy showed it had indeed advanced to SCC. Now there was no question, it was time for aggressive treatment. So this last April I started with chemo and rads. I'm 14 weeks out today and just had my first PET/CT since treatment and it's NED!!! I'm not sorry at all that I chose the wait and see route. I still feel like for me we did the right thing. if you and your ENT feel good about your decision then stick with it just never slack off on your regular check ups with him. Keep a positive outlook and I will pray that you never need any more treatment than what you are already getting. Good luck to you!!!
Billie

Mrs. Sarge
Posts: 198
Joined: Apr 2012

I too had carcinoma insitu and just had the growth removed from my left vocal cord, in 2010. It was recommended originally to have radiation, just to make sure! With my second opinion, the ENT recommended, just watching it with the usual scopes/CT scans. After 1 1/2 yrs it came back, stage 1 and at that time I took the radiation. Had my first scan and scope and it's NED. So I was wondering if nodes were involved with either of you or what made you Stage 4 Billie?
I also was wondering how your voices are now? Mine is tolerable, but not good enough to sing well, which I miss being able to do. Also wondering if either of you were coaches, teachers, cheer leaders, or singers as the ENT seems to think I abused my voice in singing/praying enough that it caused this C to begin to grow?! Just curious.

Mrs. Sarge
Posts: 198
Joined: Apr 2012

I reread your post and see that your DX was of the tongue and not the vocal cords, so those questions don't relate, sorry for the misunderstanding. :)

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Mine apparently was very fast growing and did include a few nodes. The initial CA in situ was on the cords and this SCC was found laying just behind the back of the cords hidden from the scope. Good thing. We did the CT early! And by the way, for the last 13 years I've been a Pre school teacher....dr thinks this and possibly acid reflux played a big part in my case.

Mrs. Sarge
Posts: 198
Joined: Apr 2012

My original DX was actually spindel cell, a derivative SCC. This new growth, was SCC. I also had acid reflux, which I had been treating with Prisolex for 2 years before DX. How is your voice? Are you back teaching? Were you offered any voice therapy? I went for voice therapy the first time, but the RO didn't think it would help me this time, but I'm seeing the original ENT the 16th for another "scope" and I'll ask him if it would be beneficial to me. Thanks for your reply.

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

My voice is and has been bad for about 6 years now, that's what originally got me to seek treatment. I've been in therapy since feb 08 and it has helped me a lot but now rads have given me a huge set back. I started up again about 2 weeks ago so with any luck I'll be on the road to a better voice. My surgeon has agreed that if things look good at my next PET/CT in 6 months and therapy hasn't helped with the raspy voice he will do some collagen injections to plump up my cords. It's not a permanent fix but it will help for about a year. The hope is that if my voice sounds better I won't strain and therefor my therapy will work better.
I took prilosec too but it didn't help me too much. The best one I took was aciphex but it gave me headaches so we switched to protonix. Protonix works better than prilosec but not as good as aciphex.
Billie

Mrs. Sarge
Posts: 198
Joined: Apr 2012

Yes, a hoarse voice is what sent me to an ENT, thinking it was polyps, which it was, but also a small tumor as well. Thanks for the tip on collagen injections...I've never been told anything about them....also the Protonix or aciphex.....so I will mention those things to my ENT. Enjoyed comparing notes with you and stay well and NED!!!

Grandmax4's picture
Grandmax4
Posts: 585
Joined: Dec 2011

make exactly the same choice, I didn't have to have chemo or radiation, but just the small amount of radiation I recieved in a PET scan, caused my hair to become very thin, lifeless and brittle.( improving with treatment at my salon ) I pray I,nor any of my fellow survivors,ever have to endure radiation or chemo.

phrannie51's picture
phrannie51
Posts: 3725
Joined: Mar 2012

you DO have many people watching out for you, with check-ups every 6 weeks and a dentist every 4 months, to catch it should it come back. I'm with you on why put your body thru all the trauma rads and chemo bring to the table, when you are clear and clean...with no lymph nodes involved.

Glad to hear from you....too!!! :)

p

ditto1
Posts: 630
Joined: Mar 2012

If something changes then your approach can change, we all know the treatments are very tough and although we all would agree they are worth it if they beat the cancer, no one would volunteer to do them if not needed. So keep watching and lets just go with it will never be needed for now. Good Luck, in our prayers.

NitaNita's picture
NitaNita
Posts: 56
Joined: May 2012

My heart tells me it's the right decesion. It does scare me it could come back but I know that is the nature of the game. If it comes back I will do what I have to do to take care of it. In the meantime I have a family to care for and a busy life and I just don't see the point of putting your body through all that if it is not needed. Thank you all for your opinions. It makes me feel better knowing I made the right choice!

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

but if I may...I think the physcial scopes every 4 months (not longer) is a must but also a CT every 6 months to the head and neck and a PET every year eyes to thighs...now that just my opinion...and I pray you never have to deal with this issue again...but I also know the nature of H&N cancers can often have no symptoms and before you know it be stage III or IV ...again, I am no doctor and this is just strictly my personal opinion...

You sound like you have a great team of docs...and you obviously have done your homework and know your stuff ....

So very glad you are doing well :)

Tim

CivilMatt's picture
CivilMatt
Posts: 2955
Joined: May 2012

NitaNita,

I had a spot on BOT and 1 lymph node removed, both cancer and my ENT recommended rads and chemo because he could not guarantee no residual left behind. That being said, I think you can make a good case for a watch and see approach. Following that logic, if cancer shows its ugly head you will have site specific treatment area. Where as if you treated prior (to showing) how do you know the radiation was being delivered to the optimum location. Of course the chemo half of the equation would treat all areas equally. If scans and exams keep coming up clear, you are golden and if it goes the other way there is plenty of radiation and chemo to plug you right in.

Best,

Matt

NitaNita's picture
NitaNita
Posts: 56
Joined: May 2012

Yes I will be having the scope every 4 months and the check ups every 6 wks. I have my next pet scan to thigh scheduled for December and then again every yr after that but will ask him about the CT scan every 6 mo. I am new to all of this but just don't see logic in doing such harsh treatments if you are free of cancer. However if it comes back I will surely do whatever is needed. The only reason the oncologist even thought it was possibly needed was because they don't know how I got it. I have talked to a radiation Dr and they said because everything has came out negative with the PET, got good margins, no hpv they feel I am safe to wait and see. They say it's a 95% chance it won't come back. ENT also said there are many people watching me that they think I am safe...I pray they are right.

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

I would have made the same decision. Enjoy life, continue to be proactive and if the need comes up address it early.
God Bless!

Jeff2159's picture
Jeff2159
Posts: 85
Joined: Feb 2012

Hi

Nita I was once in your position too. Back in 1991 when I was 32 i developed a white spot on the side of my tongue and thought it was a canker sore. It did not go away and i had it cut out 3 times and biopsied during the next 4 years and each time it was nothing as they did all kinds of tests including fungal and HIV. Finally in 1996 it turned to squamous cell and the battle was on as they took a wedge out of my tongue. Things get sketchy unless I look at my paper work but I had reoccurrance in 2000,2001,2003,2005,2007,2009,2010,then in nov2011,dec2011 and jan 2012. Each time I had clear margins and each of the surguries was minor compared to most here as they were out patient except for 1996 and 2003 when they put in a skin graft to help build up my tongue so my speech would not be compromised. After Jan2012 I decided to do the radiation and had a PET and scan and surprise-- I had Kidney cancer but my mouth was clean. Kidney removed in March, metasis to lung at the end of April I went on a drug called Sutent (which prohibits blood flow)for the metasis and had to stop as my surgery site in my mouth was splitting open at the floor of my mouth--actually this started a week before the drug but the sutent just made it worse. Stopped the drug and had a skin graft to repair my mouth at the end of June but found there was cancer again (reason for the start of the split) and I had perineural invasion too. Had to go back on the Sutent as the metasis was going to kill me (it started to work as the lung nodules did shrink)but the sutent after 24 days of pills just dissolved the skin graft so I stopped again but the next ct scan showed all metasis gone. My kidney oncologist was and is stunned of my results--it just doesn't happen, it really is a miracle-- prayers do work. Well now I just got back from the hospital today from outpatient as my mouth doc was going to remove scar and dead tissue so that he could prep the area and get Wit ready for finally closure this 23rd. Only problem is I have an area that blossomed this past week under my tongue and was found to be cancerous.I jusst assume I will get clean margins on the 23r. d and still have the skin graft and then wait for all this to heal so that I can finally have radiation. Looking back maybe i should have had radiation as my doc did say I had dandilions in my mouth that could blossom at any time. What sets them off? I don't smoke, chem,or have HPV and I don't drink that much (now I don't). I waited for so long as I always got clean margins and lymphnodes were not involved and it was manageable.I could always see the cancer or changes to my mouthand I was proactive in seeing my doctor. I also wanted to hold off to save my ammo for when I really needed it as you know you can only radiate an area so much and its not a sure thing that it will eliminate future cancer. good luck to whatever you decide

Jeff

NitaNita's picture
NitaNita
Posts: 56
Joined: May 2012

Wow, I would say God has been watching over you for sure. I worry quite often that it will come back. I think we all do! I know if it does I will probably choose to have the radiation done since as it stands right now it's a 95% chance it won't come back. If it does then I know my chances of getting it again will be even higher and it will be time to be more proactive. So hard to know what to do in situations like these. I guess all I can do is pray that God will take care of me and lead me to make the best choice possible. Thanks for sharing your story! Best of luck!

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