Previous Thread
Next Thread
Print Thread
Page 1 of 3 1 2 3
#195159 09-28-2017 11:41 PM
Joined: Sep 2017
Posts: 10
Member
OP Offline
Member

Joined: Sep 2017
Posts: 10
Hello, all, my name is Mary DeLongfield and I will tell you of my experience with tongue cancer and ask for advice. About 4 months ago, I had a sore on the front of my tongue. I thought it was a cold sore and put cold sore cream on it for a month. It did not go away, so about 5 to 6 weeks later, I went to my primary care doctor. She sent me to an ENT doctor who took a biopsy & it was squamous cell carcinoma stage one, she arranged for a pet scan and lung xray and all was clear. No cancer in my lymph nodes or anywhere else. On September 6, I had surgery to remove it and a small part of my tongue. Lab results came out good, clear margins. She then told me on the follow up visit all was good, but the type of cancer was found to be an aggressive form so she sent me to another ENT in the medical group.
He wants to do an elective neck dissection, cut the right side of my neck open, remove my lymph nodes, as he said that will stop any recurring cancer from go into my lymph nodes. Plus remove more of my tongue. The side effects are what scare me. Possible vocal cord and lower lip paralysis, problems being able to talk due to the partial tongue removal and paralyzed vocal cords, and I will not be able to lift my right arm. And I could possibly lose complete use of my right arm completely . He said this procedure will give me an 80% of living and if I don't have it, I will not have a good chance of living. I have been advised of getting a second opinion from another ENT and being seen by an oncologist (have not seen one yet). I am going to both of them next month. I am very scared to lose my speech and use of my right arm. I am asking for advice and any information from those who had an elective neck dissection please

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Welcome to OCF, Mary! Im very happy to see you here smile You have found the very best online group devoted to helping OC (oral cancer) patients and caregivers.

Another opinion from a top notch ENT who treats many oral cancer patients and is completely seperate from any physicians you have already seen would be the very best choice for a third opinion. The doc who gave you all the worst case scenarios of side effects gave you your second opinion. I find all those possible side effects to be a bit extreme! Surgeons cut and will always recommend surgery. Once its been removed it cant be put back or ever returned to exactly how things were before the surgery. Ive seen hundreds post here about similar concerns with a neck dissection.

A neck dissection can cause mobility issues with your arm but I have not ever heard of anyone who completely lost use of their arm like what you described. What we usually see is patients who can only lift their neck dissection side arm up to about where the elbow is shoulder height. Im not understanding if your first surgery had clear margins the need to remove more of your tongue. Im also not following if you were successfully treated for SCC (squamous cell carcinoma) why you would have 80% chance of survival by having the surgery and without it not a good chance??? Sounds to me like that appointment brought you much confusion and concerns about the need for further treatment when the original surgery was a success. Im right there with you in being confused at why that ENT is pushing for additional, more invasive surgery when your first doc got clear margins. I know quite a few here have been thru multiple surgeries for tumors on their tongues. Hopefully they will weigh in soon.

Best wishes with everything!!!

PS.. Im sending you a private message or 2 so please watch for and click on the tiny flashing envelope next to your "My Stuff" tab above.


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
Joined: Sep 2017
Posts: 10
Member
OP Offline
Member

Joined: Sep 2017
Posts: 10
Thank you, Christine, for your reply. My first doctor who did the surgery, told me that they got all the cancer out, and before the surgery, she told me that I will not need any radiation or chemo follow up. Then when I went for the post surgical appointment, she said yes, all the cancer was removed and the hospital said all the margins are clear. However, this is a very aggressive type of cancer, so she is referring me to another ENT in my medical clinic. That is when this doctor advised the neck dissection. I was so upset when I got home, as the surgery ENT gave me the feeling that the only thing necessary is to remove the tumor on my tongue, but since it was stage one, and caught early, that is the only treatment I need, and then the 2nd ENT advised an aggressive follow up, the neck dissection. The good news is that I got the OK from my HMO to see another ENT that is not in this group and about 25 miles away, for another opinion. Then I asked my Primary care doctor to refer me to an oncologist and she did and again, the HMO OK'd it. (a friend I spoke to was surprised that I did not have an oncologist, she said that cancer patients need to be seen by an oncologist). That was something I never considered, and I thought to myself: " I am not even thinking properly, I never even considered seeing an oncologist! Cancer=being seen by an oncologist!)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Welcome to the forum, Mary. I'm sorry you have to join our group of friends, but you will find support here and members do care.

I agree that you should see an oncologist. It's good news that your HMO has approved that. Oncologists will have the experience and will have seen many more cases of sac than a general surgeon, for example. If the oncologist feels you need further treatment, then, he or she will probably refer you to a medical or radiation oncologist. Don't blame yourself for not thinking properly. The dreaded word "cancer" throws people off. Your family doctor should have made that referral in the first place, or the surgeon who did the surgery. It's as much their responsibility as it's yours.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Yes, you should see an oncologist who would be the one to make your treatment plan. I just find it so unusual for one ENT to refer a patient to another ENT after their surgery. Second opinions normally are done prior to any treatment, its to decide a treatment plan. When the first doc says everything is ok but then refers you to another doc sounds like they dont really trust in their own work. Then the second doc comes up with a radical treatment plan telling you all the worst case scenarios, thats troubling and probably scared you to death. Im so sorry you are going thru this!!! Plus it wasnt that long ago you had your surgery so you are still in recovery mode. Its alot to deal with all at once.

See the oncologist and the ENT (hopefully they specialize in treating OC patients) then you should have a better idea of what your next step should be. Good luck!!!


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
Joined: Sep 2017
Posts: 10
Member
OP Offline
Member

Joined: Sep 2017
Posts: 10
Yes, I believe that I should have seen an oncologist, probably before I saw the ENT doctors, but I do have an appointment to see one more ENT doctor, totally separate from my medical group I belong to, and THEN FINALLY an oncologist that I should have seen long ago, Appt. on October 19th!!

Joined: Sep 2017
Posts: 10
Member
OP Offline
Member

Joined: Sep 2017
Posts: 10
Christine, you are reading my mind! I thought the same thing: ENT #1 gives me the impression that this is a minor surgery, and when I asked her if I need follow up radiation or chemo she said "not necessary". Then she refers me to her co-worker, who says I need this neck dissection and insinuates that my survival chances are very low if I do not do what he proposes. But, if I do, I can have an 80 percent chance of surviving. Does the right hand know what the left hand is doing???

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
I think you need to see an oncologist.... both a radiation one and a medical one (for chemo). An oncologist is who should be determining if you need rads and/or chemo. If at all possible it should be at one of the top CCCs in the US. Do you need the list of top hospitals?


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
Joined: Sep 2017
Posts: 10
Member
OP Offline
Member

Joined: Sep 2017
Posts: 10
Yes, Please. I believe I might have to call my insurance company (Blue Shield California 65+ HMO thru Medicare) to get permission to go, as I do not know if they are in my "network" of doctors or hospitals, but I will sure give it a try!! Thank you!

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Heres the list of top US hospitals...

NCI CCC list

Good luck!!!


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
Page 1 of 3 1 2 3

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5