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#198965 08-29-2019 10:07 PM
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Hi all,

I have quite the conundrum and am looking for “what would you do” opinions. I was diagnosed with stage 2 tongue cancer July 3rd. I just had my surgery August 12th; 20% of my tongue removed (no reconstruction) and neck dissection to take out 35 lymph nodes. The surgeon got negative margins by 4mm and my lymph nodes were clear, so he’s considering me cancer free - his words, not mine- , BUT my lesion/tumor has presence of perineural invasion.

My surgeon/oncologist and radiation oncologist are very torn on whether to pursue radiation. Having gotten negative margins and clear lymph nodes, I am theoretically not a candidate for radiation, but the perineural invasion puts me at higher risk for recurrence. My surgeon basically told me it was my decision to pursue radiation.

I am deathly terrified of radiation given all of the side effects, and hearing nothing but horror stories, but I have a 2 year old and a 1 year old. I need to be here for them... so do I do radiation now and almost guarantee myself a secondary cancer down the road along with the lifetime side effects, or take the chance and pass on radiation? I am so torn. I am not asking for medical advice, but your opinion on what you would do in this situation. I know I am very lucky to have such a decision where most don’t, but those that have gone through radiation, I am curious to know your experiences and if you had a choice given the circumstances, would you do it?

Thanks for reading the long post - and I’m hoping some chime in and help ease my dilemma. ❤️

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Welcome to OCF! Im very sorry to read about your current situation!!! At OCF, we can help you with info and support as much as we can. Im a firm believer of being an educated patient to be as prepared as possible, to have open and informative talks with your medical team, and be your own biggest supporter by advocating for yourself. Theres a few things in your post that do not sound like they're correct so please understand my reply is going to be a little different than my usual one. Its pretty long and detailed so anyone reading this thread can better understand several important things about oral cancer (OC), treatments, and clarify any misconceptions that could confuse people who arent familiar with OC.

When reading online medical types of things its a very good idea to consider where source of the advice you are reading. Frequently the websites are not a reliable resource. You need correct and up to date medical info so you can learn more about your condition, treatments, etc... Far too often, message type public forums tend to be left unmonitored where anything and everything goes without anyone overseeing or correcting wrong, outdated info. If the medical type site is not Health on the Net (HON) certified, then what you're reading is most likely not completely correct. Too many unscrupulous people prey on unsuspecting patients/survivors and caregivers who are dealing with some of the most desperate times of their lives. AT OCF, we have a very strict set of rules all members are held to regardless of their current situation. Every member we have agrees to abide by our rules when they sign up to join our online OC related family. In fact, we're so adamant about having correct info posted every member agrees to adhere to our rules twice to ensure they have had the opportunity to review and understand what and why we have the rules. By the constant monitoring and our rules policy, OCF is a proud member of the very few medical related websites that have earned the distinction of carrying the HON badge. Members can expect our no advertising policy, monitoring, etc will always protect our members, their identities, and their medical info. Even after years of a steady stream of requests offering to buy our members email addresses and info, OCF refuses to sell our members out to make a buck like almost all other info type websites do.

You wrote you arent expecting medical advice from our members. I want to explain this in greater detail to ensure anyone from the tens of thousands hits where people from all over the world reading our posts and will understand everything along with OCFs position. As a group of oral cancer (OC) patients/survivors and caregivers without medical degrees or backgrounds we arent properly qualified to understand enough about all the minor specifics to weigh in. What one person would do is NOT an equal comparison of what is best in your situation. You will see this many times here "everybody's different". Just remember... everybodys different!!! Every person you meet who has been thru something similar will react in their own unique way to medications, surgeries, radiation, etc... That said, its very difficult to make a truly equal comparison even with someone who appears the "same" on paper. Theres still far too many variables to use the one person you know who has been thru this and is now on a permanent feeding tube and is unable to speak. This may seem shocking but please consider this person is fortunate to have survived and may be leading a full, happy life even with their permanent complications. Its amazing what some people go thru as routine, where others view it as a negative experience. Funny how some see a person in a wheelchair as a sad thing, feeling sorry for that person having to suffer like that, unable to walk. But to the person in the wheelchair they feel incredibly lucky to have survived at all and gone on to live a long, mostly healthy life that has some challenges but they take it in stride and are just so happy they're still alive they are a joy to have around. I hear the words "inspiring", "motivating", "touching" used alot when I talk with people I meet in my travels. But what isnt really factored in is ... when facing a life and death situation, making those hard choices as a parent who is considering children's overall best interests, we as OC patients often will do what is necessary instead of what we think is easiest and less invasive.

Treatment plans are created out using a complex flow chart from NCI (the National Cancer Institute) (I think?!?!, it might be the other US gov. cancer organization, sorry!!!! I just cant remember right this minute) medical test results, etc. Depending on so many variables to map out the treatment plan for each patients exact situation. To do radiation or not to do radiation has been discussed many times here. You arent alone in fearing the long term issues from rads can negatively impact your long term health. It is a very important decision that has life long ramifications with whichever decision you make. Many patients with oral cancer (OC) that have their tumor removed surgically will still need to go thru radiation about 6 weeks after the surgery. This is usually done to eliminate any possible stray cancer cells. All it takes is for one little "straggler" to be missed to cause a recurrence. You are correct saying radiation causes many life-long issues that cant be changed. But, radiation does NOT always (or even usually) bring on recurrences or other cancer in even half of those getting rads. Im not a "numbers" person so Im sorry I do not know the exact percentages of radiation caused other cancers. Radiation compromises healing and for an area like yours thats recent had surgery, you could have some complications with reduced ability to heal in that area. I guess its all about what perspective someone is looking from at the pros and cons of doing rads. It may come down to how much the patient is willing to endure or what risks can they compromise where they still live a happy, somewhat healthy life after their recovery. Seeing someone that has what many around here call their "shark bite" scar with (tissue taken from their wrist/forearm to rebuild the part of the tongue that was removed) to someone not familiar with OC would appear as horrifying. To those who have already been thru similar things, its not so much of a big deal. Some choose to roll the dice and not do rads where others want to throw everything they can at it to "do it once", to eliminate the cancer once and for all. The question of what would you do in the same situation would actually be a perfect question to ask your doc. They have your entire medical history, years of medical school, years of clinical research, plus you (the patient) right in front of them to examine and ask questions of to assist in determining what the best treatment plan would give the patient the best chance for a successful outcome. If you havent already done so a second or third opinion should be your next step to help you decide what path to go with.

Having radiation does NOT "almost guarantee myself a secondary cancer down the road along with the lifetime side effectsI" One of the best things I can tell you is to read both here on the online public forum and also on the main OCF website. By reading more info from a reliable source, will make you a very strong advocate for yourself whichever path you decide to make. Its another "everybody's different" type of situation. Not every patient experiences every side or after effect. The patients who do rads that follow their doctors instructions and push themselves to eat and drink over the daily minimum intake amounts will usually be one of the lucky few who sail right thru with =barely noticing any side or after effects. After years of reading every single post and interacting with almost every single member who joined after I did, Ive picked up an incredible amount of info with some stats of what I usually see happen to OC patients. Even though Im NOT a numbers or percentages lover since I was the exception to the rule with my very low chance of survival back when I had my 3rd (and much more serious) OC diagnosis. I overcome so many unexpected complications and somehow survived, surprising my entire medical team. What Ive noticed about OC patients going thru rads, roughly 10% are the "sail right thru" luckier patients, barely noticing any of the side effects and having relatively minor after effects. Next, about 20% have not quite as easy of a time but they do pretty well with having only some radiation related challenges that with minimal effort can be turned around, about 50% will begin to struggle while going thru rads about week 3 and have a hard time but its only temporary and around 6 months after rads they are almost back to how they were before cancer. Then theres the last group... the 20% I'll call them the "challenging" patients who are positive they know everything, they bury their heads in the sand, ignoring their doc and medical teams advice until everything suddenly catches up with them and they find themselves in trouble with many major side effects often requiring hospitalization to get them back on track. Years ago radiation was different, it carried many more complications and wasnt as exact as it is today with the cyber knife, IMRT, etc. What a patient went thru 25 years ago wouldnt be anything like what it is today where rads does NOT carry the same wide area of scatter rads affecting so much more than necessary. As always, every patient is different but one common factor in those who get thru it easily vs those who have problems is how well they follow doctors orders and if they're making of able to exceed their daily minimum intake thresholds, every single day.

The thought process of cancer patients form 25+ years ago is very different than what it is today. Seems like everyone knows someone who knows someone that had XYZ cancer and used some wacky old wives tale to overcome things. Just take whatever info anyone who you are talking to with a grain of salt as it most likely will NOT apply to your specific OC situation. For example, take breast cancer patients who are treated with chemo only... they can have treatments for several years all while leading their current lives with barely noticeable side effect (to the patient, they're severely debilitating!!!) it all goes back to the perspectives of who you're talking to. You will find some people come out of the woodwork telling you what you should or shouldnt be doing and how their neighbors sons boss did this or that for their prostate cancer... the person telling you this does NOT understand how different and difficult OC can be. They're especially uneducated about OC, most never even meet anyone who has had it. Even worse, they could be getting their "knowledge" from a social media chat group thats unmonitored so far fetched stories run rampant along with bogus claims for products that will "cure" the cancer patient.

Patients need to be aware of anything that could cause long term after effects, they need full disclosures. But... what one person goes thru does NOT mean the next patient will follow the same path. Some patients struggle from a surgery with compromised healing, eating and/or speech difficulties after having rads. All these things arent something anyone can ever predict or change. Focusing on what is within our control and avoiding "borrowing sorrow from tomorrow". goes a LONG way in making things as easy as possible. Many younger moms have been thru OC, a few had recurrences (MOST did not) and overcame OC again. All any of us can do is to talk and listen to our doctors, go for a second or third opinion and work on doing what it takes to eliminate the cancer... every teeny tiny cell!!!! If possible, prepare for the worst but also hope for the best. This is especially true with parents of young children. I know its NOT easy, not at all!!! But, it is doable smile . If you havent already, start lining up some helpers just in case you decide to do rads. Theres a million little things that can be done to make it easier on yourself and your family where many helpers can make a big difference.

I mentioned earlier reading more about your illness from reputable sources. Below is the link to our Understanding section where theres up to date medical info to read thru so you can better understand everything you may need to know to make those hard decisions. On the very bottom of any page are links to get to the main OCF site. Click on the words OCF Website which is the first item listed on the bottom right, or on the link I have here on my reply. As always, we will do our best to help make this as easy as possible for you and your family. We all have been thru it ourselves so we understand things people who didnt experience what having cancer, or OC means, how it impacts EVERYTHING, and how the ripple effect touches so many around the patient.

Best wishes with everything!!! I hope you have a speedy, painless recovery smile

Main OCF Site... Understanding section



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Your OC is somewhat similar to mine but I can't really help you with your decision. I will ask however where you are being treated. If you say M. D. Anderson (because they are in TX and I see you are), I say "great". If not, I'll tell you that since OC hits such a small percent of the population, it is imperative to get the best oral cancer specialist on your team. Doctors all treat cancer but few have the specialized knowledge of all the ins and out of OC.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15
SCC stage 1, lower gum Mar '23

TLC356
tlc356 #198969 08-30-2019 09:11 AM
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Hello!

My opinion from what Ive gone thru myself, regarding treating the PNI is to do the Radiation treatments. Although I dont have any medical training, it appears you need to complete radiation to make sure your cancer doesnt return. Best thing would be to ask your doctors or get a second opinion.

If your oncology team takes your case before the Tumor Board, and they come to a consensus regarding treating the PNI, then it course you should Trust their recommendation.

Cancer...invasive tumors growing... And the damage, altered functioning, pain and the End Game, in advanced cases--- are all Worse than the treatment. Worse than the treatment, worse than the treatment.

If you choose not to treat, Fine-- but you will not be able to tell what's going on, until/ if new tumors manifest themselves. By then, for example, a 1 centimeter sized tumor contains approximately 1 Billion cancer cells!

As someone whose Primary tumor was accompanied by PNI, I had no choice about surgeries and Radiation....

In your case though, I don't know..... I guess you could elect to do just Watchful Waiting??
Problem is, though, as I said above-- they can't catch new tumors until they are of Size.
And No, C T scans and PET are also limited-- they will not show small growths, tumors.

By the way, secondary cancers from Rads usually do not manifest until a Decade later, if they happen.

I hope you & your team come to a good agreement for a Plan. Based on what's best for your future.

Best!

Crystal

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Hi,

I'm new to this site, and stumbled across it when I was searching for answers to my question about why my teeth move after radiation treatments. Then I stumbled across this thread.

Dear "What would you do",
I was - am - in your very same position. I was diagnosed with tongue cancer last December 2018, had surgery and reconstruction in January 2019, as well as have 50 lymph nodes removed. Also had perineural invasion, and had radiation oncologist and surgical doctors (needed two for the 11-12 hour surgery, which involved taking muscle, tissue and an artery from my left arm for the reconstruction, and removing patch of skin from my thigh to patch up my wrist) initially at odds about whether to pursue radiation. What I made clear with everyone is that I wanted this thing out of my body, that I am a Mom, nearly 50 years old, with two young girls - 14 and 8 - who I MUST see grow up. I MUST be alive and stay alive for them, because they are my heart and soul. With that said, a couple of rounds through the Tumor Board, and the radiation oncologist came around.

I endured 6 weeks of radiation, 5 days a week, at 10 minutes per day to hopefully kill any remaining cancer cells, which ended in April. Awful, awful experience starting with the Michael Myers-like mask that you have to wear. Never thought I was claustrophobic until then. The side effects that come are no joke. One of the best things is that I lost a much needed 50 pounds in the process because I could barely eat.

My end goal is to live as long as possible for my girls. They are my driving force, and I will do practically anything and everything in my power to keep the cancer out. There are no guarantees, of course, but knowing that I am fighting is all I can do. I saw much older people coming and going through radiation and chemotherapy, and they inspired me that if they can do it, then so can I. I have a strong support system of family and friends who have been my cheerleaders. I don't know how old you are, but because I'm older, I didn't want regrets.

No matter what, stay positive, and know that you can do it if you choose to pursue radiation. You're a Mom, and we Moms are born Super Heros. 😉

Last edited by Anita J.; 08-31-2019 08:40 AM. Reason: Grammar

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FYI - I'm not only new to this site, but also new to how to navigate forums. Just in case, I posted a reply following Crystal's below. Hopefully you find it, and more importantly, I hope that you find it helpful in your decision-making process. As I mentioned, stay positive. I know that sometimes it will be hard, and you'll get emotional about the "why me?" and "can I do this?" but when those moments come, remember your babies and that you're still alive. Hug and kiss them as much as possible. I feel so blessed and grateful every morning that I wake up and get to see my "babies." They are my ultimate inspiration and motivation to stay positive and keep fighting this beast. (Ugh...hate cancer!)


Anita J
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It's a hard decision made worse by time pressure.

I had radiation treatment 5 days a week for 7 weeks with concurrent chemo. That was about six years ago. I continue to have no evidence of disease.

I do have some relatively minor lingering side effects. A little dry mouth, I have to take thyroid meds and such. All in all a reasonable trade to be free from cancer.

One of the toughest things post treatment was the fear of recurrence. Doing all you can to reduce the chance of recurrence is highly valuable. You may not want to risk being in a situation where you are thinking if only I had done the radiation treatment I wouldn't have had the recurrence.

Again a tough decision, but try to focus on information rather than emotion.

Best of luck.


Oropharyngeal Cancer, SCC, HPV 16+, stage IV T1N2b age 45
Started in my tonsils and spread to my lymph nodes
Cisplatin x3 with concurrent daily radiation treatments started 10/22/13 finished 12/6/2013
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Livandridge,

I’m hoping you’ve made a decision already as this post was made 8/29 and it’s 9/2!

I’ve had perineurial invasion found in the surgical biopsy a number of times! Each case, it was recommended resurgery and or radiation and possibly chemo.

I went for interview at other top hospitals on nyc, and found my match at a different hospital I had no loyalty too as my ENY was leaving too! I chose a radiation oncologist who headed the head and neck cancer programs at their main and sister hospitals. He came up with IORT for me, which he helped develop, it was surgery with internal radiation during the procedure followed by chemo and radiation six weeks later.

I had a recurrence almost a year latter! This time my doctor wanted the IORT again, but this time I did Proton Radiation with chemo after surgery with radiation! That has left me cancer free since then and passed my 5 year mark!

This is just an example of my case as all ate different, but the doctors were willing not to give up on me! I hope the same for you!!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Well there are NO guarantees either way you go unfortunately and that just sucks!

My story is the same as yours almost. I had tongue cancer a year ago and lost 25% of my tongue and had a left neck dissection. Lymph nodes were clear and I did not need a rebuild. But, I did have to have another surgery right after the first because one of the margins was found to have three 'stray' cancer cells. They took an additional 2 cm of tissue from that side and it was clear. They recommended radiation to me because of the 3 cancer cells that were outside of the tumor.

I went through with radiation. And as I sit here, I was diagnosed a few days ago with breast cancer. It's the same exact cancer my mom got when she was 50. Now, was there a correlation between the radiation and this cancer? Or would it of happened no matter what? No way to know for sure but I don't regret the radiation because in my heart I knew I was following sound medical advice and doing what I could to not have a recurrence.

Sorry, I'm sure this doesn't answer anything for you but I thought I'd share my story along with the rest. smile Good luck in your decision!


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019
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First of all, I want to thank everyone for taking the time to respond. I truly appreciate your feedback and read each one thoroughly. I'm going to try to respond to everyone here.

ChristineB - thank you for your detailed and thought out message. I do my best when researching to only look for medical journals that are current. It has proved VERY challenging to locate anything substantial I'll be honest, but I have found a few good ones. Most of what I relayed in my original message were verbatim from my oncologist and radiation oncologist. I often only take forums with a grain of salt; that being said this is by far one of the best forums that I have come across (hence why I felt comfortable enough to post). It was never my intention to try to pass off incorrect information or violate any rules - I felt as if what my oncologist and radiation oncologist were saying to be true, thus me discussing within my original post. I appreciate you going into detail on past experiences from other members and where I can locate more information. I'll be sure to do that now.

tlc356 - I'm currently being treated at UT Southwestern. My oncologist is the Chief of the Division of Head and Neck Oncology in UT Southwestern Medical Center's Department of Otolaryngology and Director of the Head and Neck Oncology Disease Oriented Team at Simmons Comprehensive Cancer Center. I saw an oncologist prior to him and didn't feel nearly as comfortable. I am so fortunate that my doctor took me on as a patient. My radiation oncologist is a newer doctor having just finished up his residency, however I don't mind that. He has excellent references and education and a host of tenured doctors at his disposal to discuss my plan for radiation. He's also very willing to help and is eager to see me through treatment; his bedside manner is great. I am a very, very lucky person to have such a good team behind me.

Crystal J - Thank you so much for sharing your experience. Your post actually helped make my determination in pursing radiation. The PNI is what scares me the most... even though I was given "clear margins", one small lingering cell along a nerve spikes a crazy anxiety in me. I would rather treat now and give myself the best chances.

Anita J. - Thank you as well for sharing your experience. I am 29, about to be 30 next month. I absolutely felt your message regarding your kids. That's what pains me the most out of all of this - my kids. I'm hoping that I may be able to enjoy that added side effect of weight loss since I have plenty myself to lose, however my radiation oncologist may have something to say about that. He wants me to keep my weight where its at... I told him to give me a break and let me have a win! (All in jest, of course.) I too have an excellent support system here, and agree that I want zero regrets. I really appreciate your words of encouragement and please know that I really felt it. Thank you.

GulfCoast - You give me hope in what I can only hope to experience down the road. I already had my thyroid ablated when I was 18 due to crazy hyperthyroidism (totally different story), so at least I'm not losing anything there. I have a huge fear of recurrence and having to go through surgery again. Thank you for your time in responding.

PaulB - Thank you for your message! I have chosen to pursue radiation. At this time, I don't know that I am pursuing proton therapy however I have sent a message to my radiation oncologist for his opinion on the matter. I am scheduled to start radiation on September 16, so just a few more days away.

VirgoMomof3Boys - I agree, it totally sucks, and I am really feeling it in my bones and in my heart right now (figuratively speaking). My hurt hurts for you seeing that you were diagnosed with another cancer; I am hoping that it has no correlation and (while still sucky) is more of a hereditary type situation. I agree that I feel like this is the right decision for this time as both my doctors, while saying it was my choice, went ahead and suggested it. Thank you for sharing your experience and I will keep you in my thoughts and send good vibes your way to get through this.

Thank you again everyone for your input - I really appreciate it and it has helped to guide me in a direction to pursue. I am scared beyond belief but I believe that it is the best decision for now. I am going to do more research and read more on the forums with other's past experiences. Thank you again!


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