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New with Squamous cell carcinoma #198328
05-13-2019 06:05 PM
05-13-2019 06:05 PM
Joined: May 2019
Posts: 4
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Fpm6464 Offline OP
Member
Fpm6464  Offline OP
Member
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Joined: May 2019
Posts: 4
Hello
My name is Paul and I was diagnosed with stage 2 tongue cancer in March and had surgery on April 16 where they did a partial glossectomy and removed 25 lymph nodes from my neck. The pathology all came back clear as well as the margins. Now the “team” is recommending radiation but they don’t say it’s a slam dunk decision.
Regardless they want me to decide and I don’t know what to do. Their argument is that even though the nodes were clear, cancer cells could be in other nodes. Why did they choose to take out the ones they did? I don’t want to make the wrong decision here but I really don’t want the side affects of radiation either. What would you suggest? The team radiologist is recommending 30 treatments but says it’s my decision as it’s borderline. Still he is in favor of it. I went for a second opinion and got basically the same answer. I don’t want to make the wrong decision here but not wanting the side affects either. Really confused on what to do. Can you suggest anything for me ? Thanks

Paul

Re: Squamous cell carcinoma [Re: Fpm6464] #198329
05-13-2019 06:31 PM
05-13-2019 06:31 PM
Joined: Jun 2013
Posts: 345
alabama
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KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 345
alabama
We're none of us doctors here and can't give medical advice ... that's the official caveat and what makes this a truly trustworthy site ... the admins can give you links to real reference materials, but not what choice to make. That really has to be between you and your family (if you want it to be) and your doctor.

I *think* they do a random selection of lymph nodes, remove them, and test them for cancer in the lab. It's a grab-and-guess procedure (unless, I suppose, they open up and see a visible tumor or some such). I had maybe 30 removed, I can't recall right now. Makes me wonder how many we have on each side! Mine were clear too. So yes, theoretically, they could remove all but one, have them all test clear, and still have one in there that is cancerous. Clearly the odds are not in favor of that ... but it could happen. And from what I experienced, doctors don't like those 'maybe' scenarios.

The choice is yours, though. Go for a second opinion with your lab results to another cancer center and see what they think. You do have some time (don't wait ages, but you do have some time!) to figure this out. It's okay to keep asking them questions. Ask THEM how they chose what lymph nodes to take ... they can give you a much better answer than my guess, for sure. And it might help you figure out what you'd be most comfortable doing, in the long run.

((hugs)) Sounds like you're doing good, for now, if you're healing up from the surgeries! Keep it up! That's worth celebrating right now.

ETA: This is a response to Paul ... sometimes it's hard to tell in certain formats.

Last edited by KristenS; 05-13-2019 06:33 PM.

Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: New with Squamous cell carcinoma [Re: Fpm6464] #198331
05-14-2019 04:22 AM
05-14-2019 04:22 AM
Joined: Feb 2015
Posts: 64
Boston suburb
T
tlc356 Offline
Supporting Member (50+ posts)
tlc356  Offline
Supporting Member (50+ posts)
T

Joined: Feb 2015
Posts: 64
Boston suburb
Paul: We're in the same boat, same hospital same disease. I can't help much but I've sent you a message.


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

TLC356
Re: New with Squamous cell carcinoma [Re: Fpm6464] #198332
05-14-2019 05:39 AM
05-14-2019 05:39 AM
Joined: Jun 2007
Posts: 10,409
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,409
PA
Welcome to OCF, Paul! You are in a great place to get info and support.

Im very sorry you are having a tough time trying to decide which path you should take. It is definitely NOT an easy task trying to figure out and weigh all the risks vs the benefits. This is where second and third opinions at the very best medical facilities you can get to comes into play. If at all possible its a good plan to go to a Comprehensive Cancer Center (CCC) for at the very least a second opinion. The team based approach where all the specialists work together in a "tumor board meeting" to create each individual treatment plan for each individual patient helps patients hear from all the doctors involved and why they recommend what they do.

Im very sorry but at OCF, we do NOT advise anyone which treatment facility would be the best one for them. Since we do not have medical degrees, years of medical schooling, years of clinical patient experience, the patients complete medical history, plus the patient is not right in front of us to ask questions to as patients at treatment facilities have. Not that any of us would be able to know whats best for any patient even if we had some or all of those things anyway. Best thing we can do is to tell people to find the very best medical care they can, get at least one other opinion from a different facility than their first opinion and go with what they think is the best fit for them to permanently eliminate the cancer. A second or third opinion should be done before doing any sort of treatment or surgery. Doctors do NOT like picking up in the middle of another doctors treatments. Another thing to remember is surgeons cut and will almost always advise for surgery... same goes for radiation oncologists, for them its rads most need. the questions you asked our members should be taken to your own medical team and every other place you go for another opinion. Such detailed medical choices we arent able to help you with. Anything you get from members is not intended to replace the advice of your own doctor.6 Our members are great at answering most questions about OC, treatment side effects, etc and for being here to support each other. We arent so great with having the in-depth medical knowledge to interpret test results, pathology reports, reading MRI, CT, PET exam results, or second guessing what or why doctors advise the things they do. Its simply not possible without medical training to provide that kind of assistance. Just be careful if you are considering anything you find online thats different than what your doctors, or other doctors opinions have been... if it sounds too good to be true it probably is, always stop and seriously consider the source before going with advice other than that from your doctors. . Dr Google is NOT helpful either and should be avoided. Any "remedies" you find online to "cure" your cancer should be checked by quackwatch.org to ensure it is legitimate or just another hoax from unscrupulous sites trying to take money from sick patients.

Online or thru your insurance company you should be able to find help with rating doctors, treatment facilities, etc. These places all have their own criteria they use to compare the medical professionals and facilities. On websites that accept advertising they may not be giving people an unbiased look at what doctors/facilities are the best ones. At OCF, our members are OC survivors/patients and caregiver who do NOT know enough about each facility or doctor to help anyone make any sort of decision. We are NOT medical professionals. OCF uses scientifically proven info as the backbone of our organization providing only proven methods, treatments, etc. Always remember our members feedback does NOT replace that of your doctor/team which is further explained in the OCF rules all members agree to when joining. One thing to know is wherever you go, patients/caregivers will almost always say the facility they went to "saved their life" and is "the best ever", same for their doctor. This is an opinion based on their own experiences, not on any sort of scale to properly compare doctors/facilities. As far as seeking similar patients goes... with every single patient being different (you will hear this alot around here,) its not possible to compare patients on an equal plane. To further explain ... take a group of patients who all have the same size and kind of tumor in the exact same body location, they all are the same age, from the same area/neighborhood living there for the same amount of time (and before that all from the same area again), have the same marital status, same sex, number of children, genealogy, genetics history, profession, hobbies, same basic medical history (ex... smoked one year in college, no drug use, occasional drinker), even all are the same religion, have the same doctor and treatment facility, same allergies and blood-type.... every single person on paper appears to be identical.... they still are NOT the same!!!! This is especially noticeable when looking at how other OC patients react to surgeries and rads/chemo... they do NOT all have the same side effects, treatment issues, not even the same or bothersome long term after effects of rads. Theres about 10% of patients who sail right thru rads barely noticing any ill effects recovering quickly and continuing on with their usual lifestyle never experiencing the long term medical issues. Those lucky patients are usually the ones who do the best with their daily intake, meeting their daily minimums in calories and hydration. Each patient will respond to treatments in their own individual way, this also goes for reactions to medication, procedures, recovery, etc. Each of us is still an individual and without having a medical background or degree we are not able to fully understand just how different we are from all those who "on paper" appear the same.

Im very sorry if I provided too much info!!! Theres too much to consider when trying to make difficult medical decisions. Maybe it would help if you could read more about your illness? Ive added a link to our main OCF site where you can read anything/everything about OC. In the Understanding section you will find the more you read and learn about your illness, the stronger an advocate you will be and making your tough decisions will become easier! I know included in the OCF Understanding section theres detailed info about rads and you can find scientifically proven info which carries more weight than an opinion or recommendation of another patient without a medical background or degree. If searching online, be extra aware of the websites credibility you are reading the info on.... OCF is one of the very few medical/cancer sites with the Health on the Net badge ensuring our medical info here is up to date and correct. Theres also links to the CCC and Best US Hospitals lists so you can further evaluate your options. Feel free to ask questions, hopefully we will be able to help you with them. Best wishes with your continued recovery!!!

Main OCF Site, Understanding Oral Cancer section

NCI list of CCCs

US News Best Hospitals List


@ Paul avoid any confusion Ive merged the majority of your second post to this thread.

@Kristen..... Thank you very much for clarifying which member you were replying to!!!!

Welcome and FYI to all our newer OCF members.... When more than one member is asking questions about their own case on the same group of posts (called a thread) it can become next to impossible to determine what any new replies are for which post. A good practice to avoid confusion and to help everyone obtain the help they're looking for from our members.... only ask questions pertaining to your own case on your own thread. Posting your questions to our members for your own situation takes away from BOTH members posts, there will be dramatically fewer responses. The member who began the original post, thats who all replies should go to. Members should start a new thread if most of what you're writing is about yourself or questions about your own individual situation. This used to be so common it even earned a name around here.... "hi-jacking" (and boy what a Admin's nightmare to correct). If anyone has further questions or if theres any confusion please take some time to read our "Posting Etiquette" posts in the very first part of the "New Posters read this FIRST", look for the big checkmark for the "START HERE" section. These "Posting Etiquette" posts are important and very informative. Many hours went into creating a kind of "cheat sheet" to help our newer members to quickly and easily learn how to navigate our online patient support forum. If theres still anything not understood please send me a private message (PM).... full directions to initiate a PM are included in the "Posting Etiquette" thread. Whenever I can make the time, I will be sending PMs with the Posting Etiquette link to our newer members. Keep an eye out for a tiny flashing envelope for new PMs, its next to your name in the upper right of any page. Thank you smile



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
Re: New with Squamous cell carcinoma [Re: Fpm6464] #198333
05-14-2019 05:51 AM
05-14-2019 05:51 AM
Joined: Dec 2017
Posts: 11
M
Melba Offline
Member
Melba  Offline
Member
M

Joined: Dec 2017
Posts: 11
Hello Paul,
Clearly, you have read up on the long term side effects of Radiation therapy.
I don't know if you have an HPV related cancer, if not- you should just ignore this.
The negative impact on your future quality of life-related to long term effects of Radiation therapy might be avoided in your case. Your best interests may not be served by recommendations made by physicians that have a financial interest in your receiving radiation in such a borderline case. Radiation oncologists do not care for the future you with the horrible after effects. Its new(ish) research showing HPV oral cancer benefits of radiation therapy is questionable/limited in SOME cases.
Anecdote: We are grateful every day, as my husband opted out (same sort of recommendation you received) and he is recovering nicely, and PET scans clear.
Best of luck either way! Courage.
Melba


Melba
Re: New with Squamous cell carcinoma [Re: Fpm6464] #198334
05-14-2019 10:07 AM
05-14-2019 10:07 AM
Joined: Sep 2018
Posts: 71
V
VirgoMomof3Boys Offline
Supporting Member (50+ posts)
VirgoMomof3Boys  Offline
Supporting Member (50+ posts)
V

Joined: Sep 2018
Posts: 71
Hello Paul!

My case is similar to yours. I had a T3 tumor in my tongue and had a partial glossectomy and neck dissection. No cancer was found in any of my nodes either but I will say that one of my margins was not clear and they found three 'stray' cancer cells outside of my tumor so I had to have a second surgery to get a clear margin on that side. So....I was told that there was a 1 in 5 chance that I have any more stray cancer cells in my body. So basically, the odds were in my favor that I wouldn't need radiation. However, it was strongly recommended just to be sure there wasn't anything else lurking anywhere in my head/neck area that could grow. I went ahead and went through with the radiation but it was a very tough decision to say the least. My feeling was to go ahead and do everything I could and that they recommended to try to have a cancer-free life.

Jessica Tar is a Head and Neck Cancer Advocate who also had tongue cancer that was stage 2 like yours and didn't have radiation, just surgery. Anyway, you can Google her, just for a perspective.

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
Re: New with Squamous cell carcinoma [Re: VirgoMomof3Boys] #198339
05-14-2019 02:57 PM
05-14-2019 02:57 PM
Joined: May 2019
Posts: 17
T
TongueCancerBeGone Offline
Member
TongueCancerBeGone  Offline
Member
T

Joined: May 2019
Posts: 17
Hi Paul -

I posted the following post to another person who recently joined this forum, and I've copy/pasted it here because it applies to you as well:

A few months ago I was in the exact same situation as you are now (as evidenced by my user name!). I had to make the same choice (but as a 59 year old). I just completed my 7th (of 30) radiation treatments 30 minutes ago. In the end here were the three things that swayed me to do the radiation:

1.) The docs said "a few stray cancer cells may have been left behind" and radiation could get rid of them
2.) Several people said to me "If you do not do it and your cancer returns, you will regret it"
3.) The doc, who I trust, said if you were my brother I would recommend that you do it

Now sometimes they will recommend chemo with radiation for this situation. One thing that leaned me towards doing the radiation is that they said chemo would not be required.

Seven treatments into radiation and it is not too bad, yet...

Please let us know what you decide to do.

Thank you,
Mark


Mark
Non-Smoker, HPV+ Squamous cell carcinoma tongue and in 1 lymph node neck, 4.8 centimeters. Surgically removed March 2019. 30 radiation treatments starting May 2019
Re: New with Squamous cell carcinoma [Re: TongueCancerBeGone] #198340
05-14-2019 05:54 PM
05-14-2019 05:54 PM
Joined: May 2019
Posts: 4
F
Fpm6464 Offline OP
Member
Fpm6464  Offline OP
Member
F

Joined: May 2019
Posts: 4
Thanks Mark. I will let you know what I decide.


Fpm6464
Re: New with Squamous cell carcinoma [Re: Fpm6464] #198342
05-14-2019 06:02 PM
05-14-2019 06:02 PM
Joined: Aug 2018
Posts: 268
C
ConnieT Offline
Gold Member (200+ posts)
ConnieT  Offline
Gold Member (200+ posts)
C

Joined: Aug 2018
Posts: 268
no one discussd removing the multitude of lymph nodes in my husband. they just did 3 rounds of chemo and 35 radiation treatments. just goes to show that different places do different treatments.

best wishes.....


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: Squamous cell carcinoma [Re: KristenS] #198461
06-04-2019 08:51 PM
06-04-2019 08:51 PM
Joined: Mar 2019
Posts: 77
C
Crystal J Offline
Supporting Member (50+ posts)
Crystal J  Offline
Supporting Member (50+ posts)
C

Joined: Mar 2019
Posts: 77
Hi KristenS,

Your question was How many lymph nodes are on each side of the neck--- it's 120, per side. Yes, there is a lot!

Of the 600 lymph nodes throughout ones body , about 1/2 are located in the cervical neck.



Crystal


4/2017- Stage III SqCC- Tongue
+PNI
Posterior Margin +
Invasive moderately differentiated keratinizing SqCC
Tumor- 6.3 Centimeters
Invades tonsil & salivary glands
Negative for all HPV types
Subtotal Glossectomy, bilateral ND, Tracheo, Mandibullect, Free Flap reconstruction.
10/2017 Relapse, Recur to tongue, Mets to lip, All Pos. Margins.
12/2017 Recur BOT + Marg, re-xcisn Lip, + Marg
2/2018 - 7 wks IMRT
4/19 New Primary SqCC, Floor mouth & tongue flap . 1 mm Marg
New Dx Field Cancerization


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