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#199719 01-27-2020 06:34 AM
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I have a bump on the side of my tongue way in back..it is mostly normal tongue color with a small white center. It is semi firm, but not rock hard. It feels between a water balloon and a grape. It is probably about the size of a pencil eraser and has been there for at least 2 months. I’m wondering if bumps from tongue cancer are usually hard or can they be soft? I’m hoping someone can speak from experience. What I’ve read is that they are generally hard. I know I should get a biopsy but I keep hearing how painful they are and do not want to do anything unnecessarily. Thank you.


Sam
Ssl #199723 01-29-2020 05:11 AM
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Sam,

Anytime you have a bump, sore or abnormality on your tongue for that period of time you should have it checked out and a biopsy done if necessary. The biopsy does not hurt much and the tongue heals quiclkly. I have had two biopsies and it only takes a few seconds, it will be over before you know it. Better safe then sorry. Don't put it off!

Kent...


5/31/16 Partial Glossectomy
Right neck dissection
22 teeth extracted
Six weeks of radiation Ended 8/19/16
2/8/17 Biopsy of epiglottis-cancerous
35 radiation treatments to the throat, End 11/17/17
8/23/19 Tongue reconstruction, left radical neck dissection
Ssl #199866 02-27-2020 09:08 PM
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Please go get it checked out by an ENT or oral surgeon. You will worry about it until you get an answer, waiting doesn't do you any good. I have had two biopsies on my tongue, they were not too painful, it bled some but no stitches were necessary, it will heal quickly. I don't think mine was particularly hard but was a sore that wouldn't heal and was definitely white. Good luck and hopefully it's not cancer! If it is come on back and everyone will give you support and advice.


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 - 5/18
Clear PET scan 10/18
Non smoker, occasional alcohol use
Ssl #200575 11-30-2020 02:37 PM
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So Im just seeing this and dont know if you have had it checked, but I speak from experience. The lump for me was under my tongue in the back. The only real pain discomfort I had was a intermittent earache. The lump wasnt painful or rock hard. I just knew it looked out of place. Fingers crossed yours is benign. Mine wasnt, and had 25% of my tongue removed in April.

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Dear SSL

I strongly recommend going to see your Head and Neck doctor (used to be called Ear, Nose, Throat). The guideline is get any sore that lasts more that 2-3 weeks checked out. I was lazy and ended up being stage 4 by the time I went in nearly a year after I noticed something. Sorry to be a little dramatic but I sure wish I had asked a group like this after a month or so. They would have scared me into going much earlier and likely saved me a long but successful surgery and radiation treatment.

BTW, the biopsy barely hurt. They put a numbing agent on the spot before taking a tiny chunk out of the middle of the sore.

Let us know how it goes.

Stay safe and keep the faith,
Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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I’ve had 2 ENTs “look” at it in the past year, one of whole is a head and neck cancer specialist. Both said they couldn’t see it but they could feel it. Neither was concerned. I was told there is nothing to biopsy and the cancer specialist said it was not hard enough to be cancer. The mouth issue has been unchanged for over a year however in the last couple months I’ve developed a neck lump on the same side as the tongue issue. Pretty scary but I had a negative neck ultrasound about a month ago. I’m not totally convinced it didn’t miss something and think I’m going to try to get back into the ENT for further investigation...the ultrasound was not ordered by the ENT; have not seen the ENT in over 6 months.


Sam
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It’s been unchanged for a year. It looks “relatively normal.” The drs told me it is an enlarged sublingual gland and no biopsy was needed. That was over 6 months ago. I’ve since developed a neck lump on the same side....the ent who saw the tongue issue does not know about this bump. I had a negative ultrasound on my neck (ordered by a different doctor) about this but I’m worried it missed something.


Sam
Ssl #200597 12-21-2020 05:32 AM
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Glad to hear you have stayed on top of it. Happy Holidays SSL!


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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Mine is also under my tongue/on the side of my tongue, way in the back by my molars. I’ve had it for over a year and have seen 2 ents who both said they could feel the lump but not see it. Both were totally unconcerned and said a biopsy was unnecessary. I’ve had the tongue bump for over a year and I’ve recently developed a neck lump on the same side, since October. I had a negative neck cat scan with contrast which showed nothing in my mouth or neck. The ent actually told me “he make up what’s not there” & basically told me to stop worrying. I’m really torn as to whether I should drop or push the issue. Was your lump smooth? Ulcerated? How was the mucosa over it? Mine looks relatively “normal”. One of the ents I saw is actually a head & neck cancer specialist(the one that basically told me to stop worrying but he did look thru my entire ct scan) but I am still really struggling with this.


Sam
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The mucosa over my bump has been very pink/red a lot lately...


Sam
Ssl #200683 02-09-2021 03:02 PM
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do a PET scan ? or CT scan ? sounds like you had something , then spread to neck lymph node
just my 2 cents
better be safe than sorry

good luck


T4aN2cM0 left tongue SCC 10/17
Moderately differentiated SCC
PEG, Trachy, glossectomy, en bloc neck dissection and reconstruction 11/17
Perineural invasion present
Radiation (IMRT) and Chemo ( 2xcispltn) completed 2/18
PET - NED 05/18
CT - NED 07/18, 10/18
CT - NED 02/19, 06/19
MRI H&N, X-ray chest - NED 10/19
MRI H&N NED 05/20
CT - NED 10/20
MRI - NED 04/21
CT - NED 10/21
CT - NED 4/22.10/22
CBCT - NED 10/22
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I would recommend the PET Scan. The CT Scan missed my SCC in my Tongue although it was clearly there. I can see it when I stick my tongue out. The radiologist indicated that my crowns blocked the visibility in the CT Scan. Please push for the PET Scan if you can it is at a cellular level and shows much better detail!

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I already had a ct scan just last month and it was negative. I had to beg to get that..


Sam
DSapien #200704 02-12-2021 05:24 PM
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I had to beg for the CT scan as it is. The ENT thinks I’m totally fine. No metal artifact was mentioned in my ct scan report. The ENT I saw is a head & neck cancer specialist and he spent almost 10 minutes going through my entire scan and saw nothing in both my mouth & neck. I don’t know. I’m guessing if it was cancer, both the tongue & neck bump would have had some dramatic growth but neither have. I’m not sure what to do anymore. Maybe see a different ENT & ask for a MRI? Not sure, sometimes I feel like I’m wasting a ton of money and maybe I am just being “crazy” like the doctors think..


Sam
Ssl #200751 03-26-2021 06:47 AM
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I had a small bump near the rear of my tongue and didn't do anything about it for several months (staying out of Covid likely areas). If it grew I didn't notice it, but eventually it became very painful on contact and I got referred to an ENT late last year. His first strategy didn't take, so he did a partial glossectomy in Feb. He felt confident that it was benign, but sent it to the lab as a precaution. It was cancerous and the sample didn't have enough clear margin, so a second procedure was scheduled. In between a CT scan was taken - which was negative.

In addition to another partial glossectomy, my Doc removed ten lymph nodes from the corresponding side of my neck early this month. Three of them showed microscopic cancer. (What I have is invasive squamous carcinoma). The tongue sample was clear, though.

Monday I begin a six-week radiation program which will feature three six hour cisplatin treatments. We did a PET scan after the second procedure (also negative) but that didn't impress anyone on my team. The irony is that there is no evidence that I have cancer currently but a very high likelihood that I actually do. This is a pretty hard-core treatment program (to say the least) but squamous cell is fast and nasty if/when it comes back.

My point in telling you all this is that I think someone needs to look more deeply into your situation. Maybe I missed it, but were you offered a plausible explanation for your condition? I saw your note about the tongue, but not the neck - or the connection between the two.

In any case, I wish you the best of luck!


DW Wheeler
DonVila #200755 03-29-2021 02:53 PM
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Dear SSL

I have to agree with DonVila. I suggest another doctor/second opinion. With oral cancer, I have been told that the scans are OK but can miss things in the head and neck. In fact, with respect to my lymph nodes, they just took them even though nothing showed in the scans. And, they did find cancer in one of my nodes. I understand it is hard to find cancer in the nodes without a dissection unless it has grown significantly.

The fact that you have something on your tongue and now something in a node on the same side in your neck is a telltale.

Let us know. Stay safe and keep the faith.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
Nels #200782 04-18-2021 06:18 PM
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I had an ultrasound on my neck in October and a cat scan in January. Both were negative. I’ve seen 2 different ents for both issues and expressed my concern that both the tongue bump and neck bump are on the same side. The first ent in January was rather dismissive and said there was nothing there. The second ent, I just saw in March and was more thorough. He looked in my mouth again, looked at & felt my neck from several angles and reviewed my imaging reports. He thinks it is just fat. He did say that he sees the neck bump but feels nothing abnormal in that area. That made me feel a little better but I am still really concerned. I don’t think the neck lump has grown much...that is a little reassuring bc I’m guessing if it was cancerous it would have blown up by now..it’s been there since October. I don’t know what else to do at this point..


Sam
Nels #200783 04-18-2021 06:24 PM
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Both doctors say the 2 lumps are unrelated. And totally harmless. But not entirely sure what they are. I thinking of either was cancerous they would have grown much more or feel a lot harder. I don’t know...


Sam
DonVila #200790 04-21-2021 04:05 PM
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The bump on my tongue has not grown since it appeared over a year ago. It does not hurt but does feel irritated if I start to poke at it..


Sam
Murphy #200791 04-21-2021 04:07 PM
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2 ents have told me there is nothing to biopsy. Neither has actually seen the bump, only felt it. Not sure why they can’t see it if I can. Based off of feel/touch, they told me it’s not hard enough to be cancer and not worth a biopsy.


Sam
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Mine is also under my tongue in the back. It’s not hard and has not grown in over a year.


Sam
DonVila #200923 08-08-2021 07:02 PM
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I’m being told it’s due to friction. The tongue bump has been there almost 2 years with no growth or pain. It does get irritated & red from time to time but only for a few days. No explanation on the neck lump. Just had another ultrasound recently & was told nothing is there…


Sam
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Hi, I am new here. My mom is having part of her tongue removed. She is 84yrs. My I ask how you are doing and if your recovery was hard. Did you have to learn to swallow and speak, again? She ask to see a speech therapist pre surgery. Please tell me if questions are inappropriate. I am scared for my mom and have to one to talk too. Thank you for your time.

Keilani #201122 01-08-2022 07:25 AM
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Welcome to OCF, Keilani!

Im sorry to read you are going thru this terrible disease with your mother. Children that are their parents caregiver have a difficult job! My son helped me go thru it and even as an adult almost 15 years later, he still gets a little nervous walking thru a hospital hearing all the patients alarms beeping. Definitely NOT an easy task!!! Your mom is lucky to have you on her side. Make certain no matter how hectic it becomes, make sure to take time to walk away, clear your head, time thats devoted just for you.

Best thing you can do is to read, both thru posts here and on the main OCF pages. OCF is one of the very few medical type support public message groups thats not only monitored to ensure correct, up to date info is given, OCF members are anonymous which encourages more open communication. By educating yourself more about oral cancer you will become a better, more knowledgeable caregiver who can advocate for your mother when necessary. Im very glad you found OCF and posted.... we will help you and your mom as much as we can. Unfortunately, sometimes we can only answer so many things and refer members to their medical team to get further clarification. We try but please remember, were just like you... our members are just regular people without years of medical school, hands on clinical experience and training, etc. Our info is first handed.. What I mean by that is its obtained by either going thru it as the patient or being a patients caregiver.

If your mother has not yet gone for a second opinion, that would be a very good place to start. The top Comprehensive Cancer Centers (CCC's) are the preferred treatment centers for many who are lucky enough to have one nearby or can "commute" across country. The CCCs have the best of the best, top physicians who use a team based approach in state of the arts centers using the latest and most effective techniques and treatments. All the specialists meet together to discuss each case at whats called a tumor board. The patient is able to attend and ask questions there as well so it really can be a very important meeting usually treatment plans are addressed at one of the first meetings. If you would like the list of CCCs I can do a search or you and any other members can make use of the search function up near the top right of any page.

I have several important tips to help you and your mom...One of the biggest things I can pass along is to get your mother to eat and drink (water!!!). She may not feel like it but her sense of taste and ability to chew and swallow will probably be affected at some point making eating nearly impossible. If your mother is on the average or slim side she should try her best to put on a few extra pounds. Fighting cancer takes more out of you than people imagine!!! Getting thru treatments and recovery is NOT the time for weight loss but unfortunately almost every patient struggles with this and ends up suffering much more than if they took in at the very least 2500 calories every single day. Since your mothers treatments are likely to include surgery, radiation and possibly chemo as well those things require lots of extra calories plus your moms body is fighting the cancer and trying to rebuild the damage it creates. Especially important is eating all her favorite foods now, having seconds and desserts as well to hopefully build her up before beginning any treatment or surgery. Now is the time to eat and drink everything, all your moms favorites without concern about calories, weight, or worry too much about balanced nutrition... if your mom likes it then she should eat it. No way would anyone want to start out doing rads having cravings and then they're not physically able to eat the favorites. Plus most will temporarily have a very different experience when foods lose their flavor and taste burnt, like cardboard or nothing at all. Without somethings regular flavor that makes it very hard to eat too. She should drink a minimum of 64 oz of water every single day.... this is vitally important for those getting rads with or without chemo!!!

Another item to add to the every growing long list.... the dentist! Your mom should get a thorough check up at the dentist and if radiation is in your moms future then she should have fluoride trays made to protect her teeth. Any dental extractions needs to be done prior to treatment and waiting about 4-6 weeks afterwards to have her mouth heal before the cancer is treated. I know this can be overwhelming and seem like its impossible. Many patients and quite a few caregivers need help to get thru everything. Suddenly, out of the blue, a cancer diagnosis brings people to face their (or their loved one if a caregiver) own mortality which can be quite shocking to most. There is nothing to be ashamed of or embarrassed by if you, your mom or anyone else thats close needs therapy and meds to help with the anxiety and overwhelming worries. As with everything here.... sooner is better than later so if you think you and/or your mom needs that type of help ask her to ask at the treatment center, her docs or nurses and get that going asap. Sorry about giving so much info!!! Thats just the tip of the iceberg too... OC is quite a life changing experience that will surprise you with the positives that can come along with the diagnosis. Do your best to see everything in a positive way, the therapist if used would be a huge resource for this!!! The best thing I can share is to avoid focusing on negatives by limiting the time spent on things out of yoru control.... those what ifs will get you down every time so when you start thinking along those lines give yourself only a few minutes before you "change the channel". What I mean by that is to physically get up, walk away from whatever you were doing when the what ifs started and go do something positive. Once I learned this trick I felt so much better about my situation and was able to accomplish incredible amount of household chores Id put off. Instead of the what if worrying, Id go clean out closets, when I ran out of closets I had to find something else positive to keep me busy so I moved onto rearranging dresser drawers, going thru all the clothes me and my children hadn't worn for a while and donated them, rearranging the pantry, all my kitchen drawers and shelves. I even organized the garage and outdoor sheds. I wasnt the best at changing the channel so I needed varying tasks to hold my attention and focus on only the positives which meant I would read complex books with great plots, watching mystery movies that make you pay close attention, played wii with my teenagers and did alot more family activities too. I really hope I havent overwhelmed you with overloading you with alot of things the docs and nurses dont go into or if they do its briefly with how much they legally must tell everyone.

Hang in there!!!! You can lean on us, we completely understand what you and your mom are going thru and we can help make it a little easier.


PS... Its best when starting out as a new member to begin your own thread for your own specific topics. This particular thread is almost 2 years old. The original posting member hasn't been on here for many months so its highly unlikely you will receive an update or even though the odds are slim if an update reply is posted, comparing patients to each other never is an accurate comparison. Every single person is their own unique individual with exposure to a million different things in their lifetime, its not possible even if on paper the patients appear alike.... they arent! No two tumors are exactly alike, they could be anywhere in a persons head or neck areas with size, shape, and even different types of cancer impacting every single thing. Patients never will be the same age, sex, live in the same area, work the same type of job, have the same family history including exact number of children, family history going back decades exactly like another patient and thats just to name only a very few of the hundreds of things that will impact affect any cancer patient, how they adapt, recover, have a recurrence (hopefully not!!!). Hopefully you can better understand just how much of an individual each of us are. For now, I will leave your post here on the slim chance the person you asked questions to would reply. After a week or 2, I'll move it to its on its own thread to avoid confusion and it wont take away from whats already been written or confuse anyone reading 2 different members questions, replies etc as that can easily confuse our newer members.


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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