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Wife undergoing treatment for stage 2 tongue cancer

Jackman12345
Posts: 5
Joined: Feb 2013

hello

i am new to this forum.  as I type, I am sitting in hospital room with my wife who has just undergone surgery for tongue cancer.  They removed about 1/3 of her tongue and put flesh from her arm in its place and flesh from her leg in the arms place.  She is thought to be stage 2 but we havent got pathology report back yet.  She is 28 yr old school teacher, doesn't drink and doesn't smoke And it is not thought to be hpv 16 related.  I don't really even know what I'm asking; just looking for support I supposse.  for my entire life, I have paid no attention to cancer related stories but now I can't stop looking them up.  I feel so bad for the suffering people all over the world endure due to this disease.   So very sad and dark right now.  We actually went to a dentist on jan 2 of this year and came back for two more visits and every time they dismissed our concerns about the tongue sore.  Only after going to another dr mid February was the alarm raised.  I am so mad right now I have stonach aches and depression.   Are they liable?  Shouldn't they be punished?  I know priority one is getting my love healthy but I feel so helpless and want to feel like I am doing something.  Does anyone have experience with dentists failing to diagnose?  Would 45 days have made a difference in regards to having caught it in stage one?   Thanks for y'all's time  and I'm so sorry to all that have been effected by this disease.  I pray for us all. 

 

 

hwt's picture
hwt
Posts: 1824
Joined: Jun 2012

You have found a good place for support.  We are sorry you had the need to find this site but welcome you. I understand your frustration.  It's hard to separate where the anger at cancer should be directed. While the journey that your family is on will be difficult it is doable. As far as legal liability for the first dentist, I'm sorry I don't know. Maybe someone else will chime in that has been down that road. Prayers for your wife and family.  

corleone's picture
corleone
Posts: 144
Joined: Jul 2012

 

Sorry you are going through this. I only have a few comments.

Firstly, I understand your frustration regarding "no risk factors". I have nasopharyngeal carcinoma. Prior to being diagnosed at 46, I never smoked in my life; didn’t drink (if one can of beer every couple of month qualifies for drinking, then yes, I drink); used to eat “healthy” (more or less); exercised regularly, kept weight within normal limits; no excess of any type (including regular sleep hours, etc). No exposure to toxic substances (except unavoidable factors like pollution), no family history, no known inherited genetic predisposition. Race (I am Caucasian) was not a factor (this type of cancer is endemic among certain population or ethnic origin).

Secondly, the tumor has been caught early; usually this is caught much later, stage III (like myself) or IV. So I wouldn’t (necessarily) blame the dentist, it’s very difficult to catch this in early stages.

Thirdly, these types of tumors tend to grow very slowly, with locoregional spread. I would say 45 days wouldn’t make a big difference and I sincerely doubt would make the difference between stage 1 and 2. Even more, the treatment for stage 1 and 2 would have been very similar anyway.

Not the least, as you will see from other forum members, this treatment, while tough, it is doable (I went through radiation and chemo treatment, details in my profile) and there is definitely light at the end of the tunnel.

 

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

I am fairly new to this forum myself, and so grateful I found it. The road you are about to take will have really bad days and some really good ones when you hear that she is responding and then utimatially ITS GONE! I am a 12 yr survivour of Stage 3 NPC, in my nasal cavity, hopefully that gives you some hope that this is BEATABLE! Just think of all the new scientific things they now have between then and now! I wish you and your love didn't have to go through it, I was 28 and this wasn't part of the plan, but trust me when I say this: When its over and her new life begins, you'll realizle somewhere in the hell you received a miracle. Not just her healthy, but a renewal on life, a time realize all that you missed before! I know its hard to feel that now, but believe mean, it will happen and you'll say Ah, that's what that crazy lady meant!

In the mean time, if you Believe, pray. The Lord gives peace, rest, reassurance and help and a thousand other things, you just need to ask Him to take control, and then follow the path.

Keep us updated on the pathology report. As far as sewing, I was misdiagnosed by an awful ENT, for 6 months and a surgery, my parents asked if I wanted to sew for malpratice because I definitely went from stage 2 to 3 in his care and at the time I said no I was just forunate that God spared me. In hindsight I wish I had. Hope that helps.
As far as your depression, pull of of it, and if you can't go to dr and ask for something for anxiety, your wife will need you to be strong for her.

God Bless you both,
Rachel

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

I'm sorry you find yourself in this forum....but, I can tell you this....you have found the best place in the world for support and information.  The folks here are wonderful!!

I don't think the 45 days you've had to wait between your first Dentist appointment, and today...the day of surgery....made much difference in your wife's disease status.  Most of us have started out going to Dr.'s who gave us antibiotics for weeks, then referred us to a specialist....then the time it takes to get treatment set up.....I started going to the Dr. in January of last year, and treatment didn't start until the 24th of April....a little over 3 1/2 months from the first time I went to the Dr. about a lump in my neck.   

Your wife is going to be ok....you don't say what treatments they have lined up for her, but I can tell you this.  Oral cancer is treatable, and very doable.....again, she's going to be ok!!

p

HobbsDoggy
Posts: 165
Joined: Feb 2013

I also had a wait between suspected cancer and treatment as it just was not clear what I had.  I got a second opinon at the major very well respeced medical center that the wait would not make much difference as the cancer had not spread outside of my neck area and the primary was unknown.  Still it was stage IV technically.  That is always scary.  Nick and head cancers are very treatable so should be fine in the long run, the treatment is rough for sure, but the results tend to be excellent.

Do not mean to give any medical or legal advise, just what happened to me.  I am hopeful all will turn out well for your wife, hang in there its a long but useful road.  I know nothing about the obliglaions of a dentist to catch this sort of deal, just so its clear I am not giving my opinion on that.  Seems for all of us cancer is as close to hell on earth as one can get.

Jackman12345
Posts: 5
Joined: Feb 2013

I don't mean to only respond to one persons words; I have just not figured out how to work the site yet.  thank all of you for your responses.      It really does help hearing y'all's words.  I do understand that I should thank god for it being caught early...and I do thank him constantly.  I know people are dealing with way worse, and I really wish the best for them.      I guess one thing I am dealing with is How I thought the good results from the ct scan were definitive but now I am told the pathology report might come back with bad news?  I guess I should get used to that huh?  I tend to be pessimistic which is the exact wrong mindset in this situation.  I am striving to be strong for her.  we just had  our first child in August (little girl) and are so in love with her.   Thank you for letting me vent.  I can feel ourselves becoming part of the "cancer club".  We need suggestions on how we can help others?  How do the walking events help?  What organizations are trustworthy for us to donate to?  

Jackman12345
Posts: 5
Joined: Feb 2013

The dentist advertises a cancer screening that comes with an 89 dollar cleaning.  We spent 2800 dollars on wisdom teeth removal and root canal but they couldn't "throw in" the screening even with a 3 cm sore present and easily visible?  I need to stop thinking about it.  I just want to run out into streets and scream at people to get checkEd.  Why is awareness of this so low?    More venting       

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

Welcome to our little corner of the world. It's a part of the world we never thought we'd want to visit but once we see how much support we find here, there's nowhere else we want to be.
Before I attempt to answer any of your questions, I have some important advice for you....STAY OFF OF the INTERNET!!! The web sites you are searching may be full of old data and statistics and will only scare and confuse you. I promise you that if you come here for questions and advice you will get the truth and tons of support.

Ok now that we have that out of the way, I'm Billie and it's nice to meet you! I was diagnosed with StageIV laryngeal (vocal cord) cancer-SCC. Like your wife, I never smoked, very very rarely drank and I was also HPV16 negative.
I successfully completed 8 weeks of chemo (erbitux) and 7 weeks of radiation and I am now NED. Treatment is hard, I am not going to lie to you but it is doable. I finished treatment in July 2012 and I will have another CT and PET scan in April. My doctors fully expect those scans to show NED as well.

As far as taking action against the first dentist, that is totally your call but sometimes these growths are hard to diagnose in the early stages. Many of us were misdiagnosed for months if not longer and given antibiotics to try and treat infections or what have you. Then once we are finally diagnosed we waited sometimes a couple more months to start treatment. We all had the same fear as you in that we thought the cancer just had more time to grow. I hope it will relax you to know that it doesn't grow nearly as fast as we think it does. Trust me, I was told that too but the anxiety is so strong that we can't hear it when people try and tell us that. Now that some of us are finished with treatment we are more relaxed and try and help the new folks understand it too.

Being 28 is actually a good thing. Your wife is young and healthy and that will come in handy for getting thru and responding to treatments.
Plus she has you and I can tell you are a caring guy and are going to be very attentive to her, and your baby....congrats on her by the way :-)

It is commendable that you want to find ways to donate to cancer charities and you will have time for that later. Trust me, you guys will want to do anything you can to help with cancer but right now just focus on the task at hand. There will be plenty of time to show your support.

I want to tell you to relax and take a deep breath and I know it's so much easier said than done but please do try. I know right now you are both scared but know that many of us have been there and now have completed treatment and we are fine! There are many going thru treatment right now and we try to be here for them, just as we will for you. You two will do fine, I promise! You found us at a good point in your journey. I didn't find this place until I was about a day from finishing treatment. I so wish I'd had the support earlier on when I had so many questions.

Please come to us and ask anything you'd like, no question is silly or dumb. And remember no surfing the web!

You didn't mention where you are from, maybe we have some members who are close to you and can recommend Dr's or hospitals to you.

Again welcome and relax.
Billie

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Hi Jackman,

I'm sorry and glad you found us. I'm relatively new to the site myself. The folks here are amazing and have helped me in more ways than I can count. 

I can read the raw emotion you're feeling in your words, especially knowing you're sitting in your wife's hospital room as she's lying right there after such intensive surgery.

Many of us here never realized there was even a problem until we felt a lump in our necks. That was the case with me. That was August 2012. I wasn't officially diagnosed until Nov. 30th 2012. I had a tonsillectomy on Dec. 21st to help determine the primary site. Nothing was found so I was dx'd  Tx N2b, MO, Stage IV. After a 2nd opinion, I had surgery to remove the tumors, further biopsies of the back of my tongue a bi-lateral lingual tonsillectomy and laryngoscopy on Feb 7th. So you can see that typically there is a bit of time that passes before all the pieces of the puzzle come together. I start treatment in the next two weeks.

Cancer shows no prejudice and can affect anyone, anytime for whatever reason it wants to. Yes, there are certain risk factors but there are equally as many people not at risk that get it. 

Concerning your dentist? I understand your frustration but your dentist is not an ENT.  Obviously, you were concerned about the sore on her tongue. If it were me and I wasn't getting the answers I wanted, I would have been all over it and either insisted it be looked at or sought a 2nd opinion. It appears you've done that. Your wife's cancer has been caught at a very early stage. There's no way to know if 45 days would make a difference as many H&N cancers are much further along by the time they're discovered. Typically, the cancer has been there for some time before we even suspect there's anything wrong. 

As you said in your post, the priority here is getting your wife better. A 2nd opinion is prudent and I would recommend it. Make sure you and your wife are confident in the "team" of doctors and specialists that will be treating her. Confidence is key in maintaining a good attitude through all of this. Initially I was told that HPV was not a factor in my cancer. After a 2nd opinion and upon further review,, surgery and testing, HPV was found! This is huge considering the responsiveness of treatment. 

I won't echo much of the good advice already given. It's been said but I'll say it again, stay away from reading everything you can on the internet. I scared the bejeebers out of myself! Everyone is different. We're not a statistic. Be there for your wife. She's going to be hurting a bit from the surgery and will need you. I understand your feelings of helplessness. My Marcia is an angel but there's not much she can do when I'm in pain, but just knowing she's there for me is huge! 

Hang in there Jackman... you'll both get through this. 

"T"

Ingrid K's picture
Ingrid K
Posts: 810
Joined: Mar 2011

Jackman

I am a 2 year tongue cancer survivor.  I had the exact same surgery as your wife (mine was a bit more extensive--l lost 75% of my tongue).     You don't mention anything about checking her lymph nodes.  That is usually done with a neck dissection.  Did she have that done as well ?  If not, that means there was nothing suspicious...so that is a good sign.

Being that her cancer was caught early, surgery may be the only thing required.  In that case, YIPPEE...the worst is over and she will recover just fine from the surgery.

If the medical team recommends radiation treatments and/or chemo, you will find all the answers you need for that here as well.  I am here to tell you that the treatment is doable. It sounds horrid, and on many days it will be, but your wife's cancer was caught in the early stages, so that's a good thing. Plus her young age will help her in her recovery. And she has you on her side, and a new baby to keep her focused on getting through the tunnel and coming out the other end.

If you haven't already seen it, please check out the first entry on this discussion page, "SUPERTHREAD".  This is a compilation of tips and tricks put together by one of our own (Sweetblood) and now managed by Skiffin16.  The Superthread will help ease your mind about many things that are coming at you both at once.

So, ask whatever questions come to mind.  This first part of the journey is the hardest, when you don't know which way to turn. 

best of luck to you both.

Ingrid

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

I myself was STGIII SCC HPV+Tonsils and a lymhpnode....

Dentist aren't really as up to speed I believe concerning these types of cancer..., I could be wrong. In reakity, and not to be insensitive whatsoever. But in hind sitght, you probably either should have been referred to an ENT or you guys should have probably sought one out.

But for now it is what it is, and you need to concentrate now on being positive, and being supportive as I know you are already.

As mentioned, the SuperThread is a great source of information..., try to stay off of Googling statistics and all..., most are old data and will scare the crap out of you...mostly unwarranted.

Why do you say they don't consider it as HPV derived...., to me anyone these days that gets H&N cancer and is not a tobacco user, is prime consideration to it being HPV derived... Again, doesn't matter how, who, what, when, etc... It can lay dormant for decades and for waht ever reason, become active.

As for the time frame, I really also don't think in the big picture, it's a factor..., many of us here waited much longer just getting things in place, port, PEG, this that and the other before actually starting treatment.

The big thing now is to accept it, and prepare for battle...

It's a very curable disease these days, not easy, not pleasant, but doable....

You have found a great group of survivors, warriors and supportive people in all phases of this battle.

Best ~ John

jim and i's picture
jim and i
Posts: 1561
Joined: May 2011

Seems odd to say but welcome to the group. I understand your frustration and anger. My husband was missed diagnosed for over three years, that makes a difference. But because three doctors missed it we had no case. It did help my husband to aleviate some anger by checking with a lawyer to see if he had a case. You probably do not have a case but it is worth checking with a lawyer if you want to vent.

As for the cause of the cancer. They can never say definitively what caused the cancer. Mostly they attribute H&N cancer to drinking and smoking but that is due to statistics.

The best advice I can give you is to find someone to vent to and that failing vent on the board. Don't let your anger and sadness build up. You will need to do self care in order to be strong for your wife.

This will be hard for you both but know that we on this board will be here for you and God goes with you.

Debbie

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Welcome to the group, sorry we had to meet this way.

My husband was diagnosed with stage 4 tonsil cancer in Oct. 2012, he had robitic surgery on the tonsil and then got neck disection where 3 lymph nodes were involved, two of them no longer whole, and broken open. He's completed treatment and still working on the recovery and weight gain portion of the journey.

When I had strep throat and was complaining about a swollen lymph node 5-6 years ago, Dan showed me one of his lymph nodes - it was the right size, but it was hard. I sent him to a doctor, who gave him antibiotics and sent him home. It didn't get better, but a few weeks later, the doctor had sold the practice to another doctor who he did not like... so Dan didn't follow up. We werent really 'worried' - everyone gets lymph node symptoms occassionally. It wasn't until this past summer, when Dan started to get a gravelly sound in his voice, and the node turned into a huge lump.. then it was panic. If we had paid attention.. if information was out there that people were at such risk.. that every lump isnt' just 'fighting an infection'. What this all proved to me, is that doctors do their jobs, they don't really look out for every patient the way I think maybe they should. I think there are a lot of people here in this group, because they want to be the best self-advocate, or advocate like you and I for our spouses.. they want the best of care. It's sad, but it's reality. And I can't think of a better way to spend energy than learning and sharing with those that need it most, and can teach me what I don't know.

When you spend more time in care, and waiting rooms, infusion rooms, or in a general oncology area, you'll find there are sooo many more patients than doctors, and their time is focus'd on doing their best every day.. hard to accept that they do their best, and we have to fill in some blanks, and make sure they have the right facts and question their decisions, and eventually we get the right care for our loved one.

Doctors are good, but I still trust my gut feeling, and until someone satisfies my alarm and defines what I need to know to get comfortable -- I make appropriate noise. Welcome to the patient adovacy part of 'for better or worse'. It's the most important job you might have in your life time, but you will never regret a moment. The good side effect, is you will enlighten those around you to medicine, and what can happen, and others will benefit from your efforts.

And in the midst of all of this, take care of yourself. You need to be strong for your wife. Fighting the misinformation and lack of knowledge of others will keep you from focusing on what she needs to get through this. Pick your battles, it takes a lot of energy - conserve where you can. Later, you can revisit what didn't work, for now try to focus on what will help.

Just my humble opinion... and strategy to get through this myself.

Kari

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

...this is not meant to sound flip in any way ...but if she is in her situation, age and stage 2 are a good place to start.  I'm also going to go out on a limb and say since pathology reports aren't back yet (you said) it may very well be HPV+ (since she is not a heavy drinker or smoker).

This site, especially the SUPERTHREAD which always remains at the top of the page is a grat place to start.  There is another great site called Oral Cancer Foundation www.oralcancerfoundation.org     Great resource for you as well.

I was stage III base of tongue with one lymph node invovled, I was HPV+.  I had no surgery, just radiation and weekly doses of Erbitux (not the old fashion chemo but more of a drub that sensitizes the cancer cells to radiation and prevents them from mutation / splitting thus growing.

I did whishper a prayer your frustration / anger does not get deep roots, it will certainly benefit you on the next few months....deal with that another time when your sandbox is less crowded :)

Best to you and your wife,

 

Tim

mls351w
Posts: 88
Joined: Jul 2011

First of all, STAY OFF THE INTERNET on this subject. This site has some great people with loads of experience and understanding. Personally, I do not think your dentist is to blame for not recognizing this earlier.

Cancer does not follow any rules or schedules. Every case is different. Count your blessings that this was caught as early as it was and that your wife is young and strong. I was 53 when I went through this and it was very hard. In the waiting areas I saw people in their 70's, 80's, and 90's and they were fighting it. I can only imagine what they were going through and what other health issues they were dealing with.

I had base of tongue cancer, usually caused by excessive smoking and drinking. I never smoked and drink about six beers a year.

The issue is THE PRESENT, not the past. Get your mind set on fighting this along side your wife and do not waste energy on "why or what if"

Crazymom's picture
Crazymom
Posts: 287
Joined: Nov 2011

Hi,  My first doctore told me to take antibiotics and come back in a few weeks if they were big.  Then I had a second appointment and a third before I got the dignosis.  I was SCC stage III Left tonsil and 2 left nodes .  I finished rads in March 2012 and till get my 1 year skan in March.  I have been Ned the last 11 months.  Relax and take one day at a time.  It takes a few weeks to get it all started.  The treatment is tought, but doable.  I am well now, back to work and enjoying my life!.  Your life will get better too and come here for support when you need it.   Ann

Jackman12345
Posts: 5
Joined: Feb 2013

Thank you for everyones input     We got the pathology report back.  Stage 3. Not hpv. Had spread to one node. (Left side disection has been done).  Clear margins.   

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

treatment?  If so, do come back here.....you can get so much support and invaluable information here...these folks held my hand all thru treatment and beyond.

p

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

Is good. Don't let the staging scare you as head and neck cancers are staged differently than other cancers. I freaked out when they told me mine was stage 4 and non HPV but it was promptly explained to me. Treatment is very successful these days and again, your wife is young and she is going to be just fine. It will be a tough go for her but she will make thru.
Have they said what type of treatment she will have?
Please come back with any questions you may have.
Billie

Jackman12345
Posts: 5
Joined: Feb 2013

We go tomorow to have port-a-cath? Put in her chest and peg tube put in her belly. Chemo starts Monday.  Very scared to say the least.   Radiation starts a week after that I think tHey said.  We have to get some dentist work done before then. 

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

Tomorrow is the start of your wife getting better....waking up to the port is painless, and while the tube kinda hurts afterwards, it is a very simple surgery.  Of course you're scared...we all are when faced with the unknown but I think you'll find the fear will begin to evaporate as your wife moves through treatment....once we begin to actively fighting the disease, we become empowered....our perspectives shift, and yes....you two will pull together like you only dreamed of doing.  This treatment isn't a walk in the park, but it most certainly is doable.....you see all of us made it from one end of the tunnel to the end....and we'll be there cheering you and your wife on.....with lots of support as you pass thru.

Things are going to be ok.....I'm old (62) and I made it through treatment, and headed back to work 6 weeks after I finished.  It IS going to turn out fine.

p

Grandmax4's picture
Grandmax4
Posts: 577
Joined: Dec 2011

your wife's 'rock', my husband was so wonderful during my surgery and recovery..it brought us closer as a couple than we've ever been.

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

I can only help you on the PEG part as I didn't have a port. I wish I did, with the chemo and all the fluids I got a little tired of getting poked all the time!
The PEG is an easy surgery, quick too. My husband said I was out of his site for only about 20mins. Took me a while to wake up but by the time I got my peg I was pretty weak and had been sick and vomiting all morning beforehand. I wish my rad onc would have ordered it before treatment started so that I could avoid all of that. Anyway, good for your wife that she is getting it now.
I know it's scary and overwhelming but I promise you, you both will be fine. Treatment is not fun but it is doable. Your wife has her young age on her side.
If you feel comfortable giving us her name, I'd like to add her to my prayer list.
What kind of chemo is she getting? Many of us have had different types of chemo so surely someone here can help you with that too.
Stay strong for her and try and be patient if for a while your jokes are not funny and she simply feels like not talking...it gets better I promise.
Take care,
Billie

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