Previous Thread
Next Thread
Print Thread
#196523 - 05/31/18 02:27 AM Hello!! Looking for similar experiences.  
Joined: May 2018
Posts: 3
FLDan Offline
Member
FLDan  Offline
Member

Joined: May 2018
Posts: 3
Florida
Hi. I'm new to the whole cancer issue and am looking for people with similar experiences that I may learn from. I'm a 44 year old male. I had a spot pop up on the right side of my tongue that hung around for several months. I thought it was just a normal canker sore but it wouldn't go away. My ENT noticed it when I was seeing him about sinus issues and was concerned about it. I just had surgery to remove it on 5/18 and the biopsy came back that it was cancer. I'm not sure how I ended up with oral cancer having never smoked or used any tobacco products in my life. Just hearing the diagnosis of cancer has scared me to death. I just saw my ENT again today for my surgical followup and he said the margins were clear on what they removed from my tongue so he's comfortable that they got it all from there. He also said they felt around my neck and lymph nodes and didn't feel any lumps. He's also ordering a full body PET scan to look for anything we can't see. I'm trying to think positive right now and focus on the results coming back clean. I guess one of my questions is if the PET scan comes back and the ENT says it's clear should I be comfortable with that? Is that a call that an ENT usually makes? Or should I seek a second opinion from an oncologist.....or will the PET scan have already been read by an oncologist to prepare the results for my ENT? If it Is clear should I expect to be screened periodically for the rest of my life?

Also possibly further complicating this cancer journey is the fact that I'm a heart patient as well, having been born with congenital heart defects and been through three heart surgeries. Not sure how that will come into play should I end up needing any further cancer treatments like radiation or chemo. Is it normal to have some form of additional treatment after surgical removal or is that only if the PET scan comes back showing cancer some where else?

I think that's it for now. I would love to find others with similar experiences that could give me some more insight into maybe what to expect. Thank you.

#196524 - 05/31/18 06:19 AM Re: Hello!! Looking for similar experiences. [Re: FLDan]  
Joined: Apr 2018
Posts: 24
DeniseG Offline
Member
DeniseG  Offline
Member

Joined: Apr 2018
Posts: 24
Hi Dan, Sorry to see you here. I am a 58 year old female who also did not smoke or drink much and ended up with a cancer on the right side of my tongue. I also was being seen by an ENT who also did my surgery. He did a biopsy in the office first and when it came back as cancer then he sent me for a PET scan, which came back negative. I had surgery to remove the lesion on Feb 1, had clear margins, no neck recision, but because it was near a nerve my ENT presented my case to a tumor board, made up of head and neck cancer specialists, other oncologists and radiation oncologists. They came to the consensus that I should have radiation to be sure. I just finished radiation 3 weeks ago and am having a long recovery from that, many side effects. I am not a doctor or an expert in this, just a patient trying to find my way also. My ENT made the call and consulted with oncologists, I felt comfortable with that due to previous experience with this doctor who operated on my father for oral cancer. In your case, you may want to take your records to a specialist in head and neck cancer and get a second opinion, just for your peace of mind, and question your heart specialist about how any further treatments would effect you. The future for my case is, my ENT wants to see me monthly, a PET scan again at 6 months and then on a yearly basis, not sure for how long. A PET scan can only see cancer present, it can't see if any stray cells are floating around ready to invade other areas, so follow up scans will be in your future. The PET scan is read by an experienced radiologist, so no worries there if it comes back negative. Some people here will tell you to go to a Comprehensive Cancer Center for the best treatment. Best of luck to you, keep in touch!
Denise


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 5/18
#196526 - 05/31/18 01:04 PM Re: Hello!! Looking for similar experiences. [Re: FLDan]  
Joined: Aug 2014
Posts: 18
KitKat1 Offline
Member
KitKat1  Offline
Member

Joined: Aug 2014
Posts: 18
Western Washington
Your experience sounds somewhat similar to my own. In my case, my dentist found my lesion as it was on the underside of my tongue. Although I have been an alcohol drinker, I have never smoked. I was 52 at the time. I was first sent to an oral surgeon who upon inspection didn't think it was cancer and more likely a fungal infection. However, he performed a full biopsy and it cam back as SCC. The legion was very small at the time and the biopsy removed all of it will clean margins. He referred me to an ENT who specializes in head and neck cancers. From there, I had full workup including neck and chest scans, which all appeared totally clear. So we proceeded with a very small semi-glossectomy to remove a larger margin around the area, which is the standard protocol due to the fact that the biopsy margins were very small. This surgery showed that no cancer was present in the surrounding tissue.

No further treatment was recommended, since my scans were all clear. However, I did want a 2nd opinion after reading stories on this forum, so my ENT referred me to a top oral cancer specialist at our local CCC. My ENT was not part of a CCC, but had close ties with one, including a mentor associated with it. Anyway, the specialist at the CCC only made one additional recommendation, which was to add follow-up CT scans at the 6 month and one- year points, in addition to the visual exams by my ENT, so that's the course we followed. I started out the first year with exams every 2 months; 2nd year, every 3 months; 3rd year, every 4 months, and now in the 4th year, every 6 months. Supposedly, after 5 years, unless I have a concern, these follow-up exams will cease, so not being monitored for the rest of my life.

I am still of the thought that my lesion may have been caused by a chronic irritation from orthodontia as there was a place in that area that was rubbed for quite some time by a hook used to hold my Invisalign on the inside of my lower teeth. The specialist at the CCC said that "could" be the case, but it also could just be random selection, so to speak.

Hopefully your journey will be similar to my own, which compared to many you'll read about here, was a true walk in the park.


Stage 1 SCC on tongue 3mm (7/1/14)
Biopsy had clean margins
Successful Surgery to remove more tissue and confirm wider margins (7/8/14)
Hoping I'm one of the lucky ones and this is just a small blip in my life, and just makes for a story of "how I spent my summer vacation" down the road.
Non Smoker, Social Drinker (pre DX, but no more!)
#196527 - 05/31/18 01:21 PM Re: Hello!! Looking for similar experiences. [Re: FLDan]  
Joined: Jun 2007
Posts: 10,116
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,116
PA
Welcome to OCF, Dan! You're in the very best place to get info and support to help you get thru whatever path you may be on with your recent diagnosis.

Oral cancer (OC) is not only diagnosed in people who smoke and drink, there are many (around 7%) who have this horrible disease with no known cause. It could be all kinds of reasons why one person gets this and another doesnt. Regardless of the "why", treatments are still the same so it might help you to focus on what is controllable and will help get you thru this. Best thing I can suggest to to eat all your favorites as whatever treatment you have will likely temporarily affect your ability to eat. You dont want to go into treatment having cravings!

Finding the very best medical care you can will be another important step to getting rid of your cancer. As mentioned by previous members, finding a Comprehensive Cancer Center (CCC) would be a very good choice for treatments, or at the very least a second opinion. Let me know if you need the list.

Best wishes with everything!!!


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
#196531 - 06/01/18 03:08 AM Re: Hello!! Looking for similar experiences. [Re: FLDan]  
Joined: May 2018
Posts: 3
FLDan Offline
Member
FLDan  Offline
Member

Joined: May 2018
Posts: 3
Florida
Thanks for the responses. I'm definitely hoping my journey is more like KitKat's. I'm trying to remain optimistic. However, one of the ENT's that I'm seeing (2 partners in the same practice) has mentioned possible radiation so I'm afraid that I may be headed down Denise's path. That scares me after reading other's radiation experiences on here. Obviously at 44 I'm not retired so I'm trying to maintain a full-time job through all this that can sometimes be stressful. I also have 2 small children (1 and 5) who are too young to understand what's going on and certainly won't understand what daddy's going through if I experience the side effects from radiation that I've read others on here talking about. So needless to say I'm quite apprehensive about all this!!! I'm ready to go ahead and get the PET scan done and see how we're going to proceed. Yes, Christine, please direct me to the CCC list. Thanks all!!

#196532 - 06/01/18 12:21 PM Re: Hello!! Looking for similar experiences. [Re: FLDan]  
Joined: Jun 2007
Posts: 10,116
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,116
PA
The lists of best hospitals and CCCs are located at the bottom of this post. At CCCs they use a team based approach that has all the medical professionals on the same page. They get together at whats called a tumor board meeting so all are on the same page to create an individual treatment plan for each patient. Try your very best to not worry about things you cant control, like whether you will need rads or not. Focus on staying busy and doing positive things to make your life easier down the road. Anyone you tell of your OC that offers their assistance tell them when the time comes you will let them know what they can do to help. Theres a million small things that can be done to help you and your family get thru this as easy as possible. Friends and relatives can walk the dog, take out the trash, mow the lawn, take the children out for a play date, pick up prescriptions, help your wife by cooking a meal or with housework or yard work, etc. Start a list of those who offer their help by taking down everyones name and contact info. We all need a hand at some point, some more than others.

Radiation (which at this point is only a possibility, not definite) is not easy for most of us. What Ive noticed over the years is the patients who focus on their intake and push to hit the minimums are the ones who get thru it easier and have a faster recovery. Your age will help you to get thru any treatment you get easier than someone say in their 70s. One of the most important things you can do is to begin paying close attention to your intake, starting today. Every single day you need to hit the daily minimums of 2500 calories and 48-64 oz of water. If you can get 3000 calories thats even better. If you can push to take more in thats even better, even 3500 calories is not too much. Right now (regardless if you will have rads or not)... EAT!!! Have all your favorites and even desserts, you do not want to go into this craving anything. Whatever your treatments will be, your eating abilities probably will be temporarily compromised making eating difficult for a while. Plus, you want to be as strong as possible going into it no matter what your treatment will be. While going thru being diagnosed with cancer, treatments, and recovery patients will burn up an incredible amount of calories. I know the above amounts sound like ALOT, they really arent when talking about someone who has cancer. Always remember what one person goes thru does NOT mean everyone else will experience the same or even similar things. Everyone is different and will have their own unique experiences so what you read here might not apply to you at all. Focus on what is within your control and you will be just fine.

If seeing 2 different ENTs from the same practice you still should get a second opinion. This is especially true when the ENTs are giving different info!!! As previously mentioned at CCCs all the doctors meet together so everyone is on the same page. This is a huge help to patients!!! Off the top of my head I know FL has Moffitt which is one of the US's top CCC's. Theres also MD Anderson over in TX. I know you plan on working thru everything but please understand not every patient is able to do that. Of course, much depends on the type of job you do if it requires physical work or is a very demanding job with many intricate details that require great focus or an office job that is low stress. Patients who have worked full time for over one year (at least 1250 hours) at a business with over 50 employees (within 75 miles of your work location) qualify for FMLA to handle serious medical conditions for themselves or immediate family members. Its up to each business if this time off is paid or unpaid. You may have already used some of this FMLA time when your youngest child was born or sick. I suggest checking in with your HR dept (without mentioning anything about your illness!!!!) about what FMLA time you are eligible for this year. It never hurts to ask or to be prepared just in case you need some time off. Advance time off is something you cant predict especially since you do not know much about what to expect. You are NOT obligated to disclose any medical info to your employer so start off by being very smart about this and keep your cancer diagnosis private for as long as possible at your job.



List of Cancer Centers

US News Best Hospitals List

Main OCF Site, Understanding section

Main OCF Site -- Financial Assistance


Last edited by ChristineB; 06/01/18 12:46 PM.

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
#196632 - 06/19/18 02:14 AM Re: Hello!! Looking for similar experiences. [Re: FLDan]  
Joined: May 2018
Posts: 3
FLDan Offline
Member
FLDan  Offline
Member

Joined: May 2018
Posts: 3
Florida
Well I finally had my PET scan today.....anxiously awaiting the results now. I have an appointment with my ENT tomorrow afternoon, hopefully the results will be in by then. They told me 24 to 48 hours but they would note that I have an appointment tomorrow so maybe that will get it pushed through. I'm anxious to know my next steps and where this is headed so I can quit worrying about what MIGHT happen.

#196728 - 07/08/18 04:39 PM Re: Hello!! Looking for similar experiences. [Re: FLDan]  
Joined: Jul 2018
Posts: 5
LJM Offline
Member
LJM  Offline
Member

Joined: Jul 2018
Posts: 5
MN
Hi Dan,
My story is similar to yours. I had a spot on the right side of my tongue that hung around for a couple months. It seemed worse at times and then it would seem better. It bothered me when I said certain words. After much debate, I went to the dentist to see if I had chipped a tooth that was rubbing on my tongue. My dentist knew right away that it was something to be concerned about. When he told me he was sending me to an oral surgeon and he wanted me to go THAT week, I knew I was trouble. I had a biopsy the following day. Of course they told me that it could take up to two weeks to read the biopsy and the Christmas holiday was right at the tail end of the two weeks. I went back into the Oral surgeon office and he explained that they found dysplasia and there was a small pocket of cancer that was encapsulated. He assured me that I shouldn't worry about it but he wanted a second set of eyes watching it. I went to the second specialist and he said that I had three choices. #1 Do nothing (NOT RECOMMENDED) . #2 Take more of the tongue to ensure proper margins. #3 Take more of the tongue and do a neck dissection. I chose #3. They had 8 pathologists look at my biopsy slides. 5 out of 8 said it was cancer. This hospital recommended PET and CT scans every 3 months for two years and once a year for the rest of my life. I am now doctoring at Mayo Clinic and my new ENT says that rather than doing the neck dissection he would have injected dye into tongue to see which lymph nodes the dye went to and THEN take a biopsy of those lymph nodes. He assured me that I received proper care but this procedure could have been an option. They plan to do PET scans every 6 months.

My main point is that you have to trust your gut instinct. You have to feel comfortable with your care plan. You have to be able to trust your doctors. You should expect to be monitored for the rest of your life. I really believe that if you can get another opinion it might be best. I believe a true second opinion is not within the same office/hospital. At Mayo clinic they did a very though exam of my neck and tongue. They did a scope down my throat. I guess what I am trying to say is that every ENT has been different for me. One was more passive. One more aggressive. One in the middle. I believe it doesn't hurt to get another opinion. I want to confirm this information but my husband and I heard my doctor say that my cancer was so small that it may not have shown up on a PET scan. I believe that is why it is so important to be diligent in seeing the ENT every three months for a few years.

One thing that is difficult when dealing with a health care crisis like cancer is that there are so many questions and as patients we can be somewhat paralyzed by the diagnosis. We are here to support you, Dan!!!


Lori
Biopsy 12/2017 microinvasive carcinoma measures 0.25 mm
Partial tongue removed & 29 lymph nodes neck dissection
Trying to accept my new normal

Support OCF


Help OCF

Shop Amazon and Help OCF

Who's Online Now
0 registered members (), 24 guests, and 1 spider.
Key: Admin, Global Mod, Mod
Forum Statistics
Forums23
Topics17,266
Posts192,186
Members11,734
Most Online306
Aug 21st, 2016
Top Posters(All Time)
ChristineB 10,116
davidcpa 8,311
Cheryld 5,260
Brian Hill 4,743
Gary 3,552
Newest Members
Bobm, homestrong, Rabbit, BCGeorge, Johnny G.
11733 Registered Users
Brag Box
Powered by UBB.threads™ PHP Forum Software 7.6.0