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ak123 Offline OP
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Hi everyone,
I am so lost and confused. I know I typed up some of this already but now I have 3 opinions.

My brother did a tongue dissection on June 24, 2014 at Beaumont Royal Oak (this is not a comprehsive cancer center). After the surgery the doctor realized that the tumor was deeper than expected. He was diagnosed as stage 1 cancer but the depth is 0.7 mm. The doctor recommended that my brother does a neck dissection to remove lymph nodes and then to do 1 week of brachytherapy (which is radiation implants).

We went to Dr. John Jacobs (Northwestern University School of Medicine, Chicago, Illinois
M.D., 1975) afterwards for a second opinion. He is out of Karmanos Cancer Center in MI. He is at a CCC. This was his opinion... I think because of the close margins, the lympathic problem, the vascular invasion I would recommend additional therapy which would be radiation therapy alone. I would recommend IMRT opposed to an implant radiation (brachytherapy) I would not recommend an elective neck dissection. The question of Erbitux in addition to radiation therapy is an open one. They might recommend it down to cancer centers because of your age group. I personally think its probably overkill.
If he were to do a neck dissection I think 1 chance out of 5 that we will find cancer cells�

Today we went for a third opinion (also at a CCC- U of M Ann Arbor, MI) The doctors name is Dr. Matthew Spector (Loyola University of Chicago - Stritch School of Medicine, 2007) His opinion is:
The treatment we would do after that is 2 choices.
1. my recommendation is re-incision (tongue surgery again) with neck dissection, re-construction of your tongue (rebuild it) and then radiation but maybe not chemo.
2. chemo radiation now. Radiation and chemo. External beam IMRT
radiation.
Erbitux- type of chemotherapy (never been studied in your type of cancer and shown to be affective) new type people are using. I would not give you Erbitux because such a high risk of coming back. The only drug that has been shown in randomized trials to help this type of cancer is high does Cisplatin.

Doctor: radiation isn�t as affective- the reason we use surgery followed by radiation is because surgery- because radiation is not really as affective when there is a lot of disease left so radiation is really good at cleaning up little few cells but if we have a postive margin we consider that gross disease left on the tongue.

What should I do now?? I need help?? Which opinion should I listen to?

Last edited by ak123; 07-16-2014 05:26 PM.

22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
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Im very sorry you are having a hard time with this! I can certainly understand how confusing this can be. None of us here are medically trained professionals. We arent qualified to make these types of decisions, only you with your family can decide what is the best option. Selecting a treatment plan is never an easy choice. Im sorry I wasnt able to help sway you on this.

Best wishes.



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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Cancer in the tongue has proven to be quite aggressive so if I were the patient and knowing what I have seen on this site I probably would lean towards additional surgery and then IMRT but as Christine points out ONLY your doctors are trained and in the best position to make their recommendations. My leaning towards the surgery would depend upon how much cancer is left because if I were told say "not much" then I would lean towards just the IMRT. I definatey don't agree with the above comment that radiation isn't as effective. In some initial treatments of this cancer radiation is the only recommended treatment.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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After reading all of the above, and because tongue cancers tend to be aggressive, I would lean towards surgery and then IMRT radiation. I have no medical background but here are some questions I would be asking the doctors:
Re Opinion #1:
Since this is not a CCC I would have more confidence in the opinion of an ENT from a CCC.

The questions I would have the following questions to ask of the #2 and #3 doctors:

1. Is a tongue dissection another word for a type of Biopsy where only a portion of the lump is removed for analysis?

(see OCF link to detailed info on Biopsy types here:
http://www.oralcancerfoundation.org/discovery-diagnosis/detailed-biopsy.php

2. First opinion was Stage 1 which seems to indicate very early stage.
How does the staging as well as the depth of 0.7mm figure into to the type of treatment recommended?

3. Is it recommended that surgery be to remove existing or remaining tissue from the tongue, the lymph nodes or both? Why?

Re the 2nd opinion Dr. Jacobs (Northwestern Univ) recommends radiation therapy alone (IMRT).

4. Why only radiation? Does he think the earlier neck dissection being Stage 1 removed all visible cancer cells?

Re the 3rd opinion Dr. Spector (Univ of Ann Arbor) who recommends
tongue surgery with neck dissection, reconstruction of tongue and radiation.

5. Is the re-incision/surgery to remove any possible remaining cancer cells?
6. Is the neck dissection to remove lymph nodes?
7. Why is rebuilding the tongue necessary? Is the staging still Stage 1?
8. When Dr. Spector said �radiation is not really as effective � did he mean Radiation alone? My understanding is that Surgery takes care of everything they see during surgery and radiation following surgery takes care of whatever not seen during surgery.

Maybe you and your brother could make a list of all the questions you both have, type them up with copies for when you next see the doctor. Or you could fax them to the doctors to be able to prepare their answers for you. That's what I have done and have had good results from the doctors I have dealt with. Making a list can lessen any feelings of confusion and helps to "release them from your brain".




Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Hi AK,

As you found out when you go for 2nd or 3rd opinions, you do get multiple options. From my experience when doing this, no two doctors agreed on what was the best option for me - it was ultimately my decision. In my case I based it on the research I did, the questions and answers I received from each doctor, and my gut feeling.

As many have pointed out, this can be an aggressive cancer, and you should seek treatment that is aggressive. Believe me you don't want to face a recurrence in a few years. There are no guarantees that whatever decision you make is the right one and unfortunately there is no "undo" button.

Gather your family around and make a list of pros and cons for each option. Ultimately it is your brother's decision as to what course of treatment he wants. The OCF forum members can share our experiences and what we've learned, but each person's situation is different and will react differently to treatment. Basically you need to select an option now and move forward. If your family believes in prayers, then pray for guidance and for a good outcome.

We will be here to help you, your family and your brother through this. Again, wishing you the best! It is not an easy decision to make.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Jun 2014
Posts: 86
ak123 Offline OP
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[quote=davidcpa]Cancer in the tongue has proven to be quite aggressive so if I were the patient and knowing what I have seen on this site I probably would lean towards additional surgery and then IMRT but as Christine points out ONLY your doctors are trained and in the best position to make their recommendations. My leaning towards the surgery would depend upon how much cancer is left because if I were told say "not much" then I would lean towards just the IMRT. I definatey don't agree with the above comment that radiation isn't as effective. In some initial treatments of this cancer radiation is the only recommended treatment. [/quote]

I know that doctors are the only ones that are in the best position to make recommendations. However, this forum has helped me understand all of this more than our first doctor and I love all of your opinions. They dont know how much would be left they just said he has a positive margin. The distance between the invasive carcinoma to the nearest margin was only 0.5 mm and thats what they are worried about. The second doctor did say that he believes the radiation will kill all of the cells. However, both doctors said they could not make a final final opinion until they received the slides from Beaumont Hospital.


22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
Joined: Sep 2006
Posts: 8,311
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Unfortunately there will be no guarantee that they will kill all the existing cancer OR it won't come back regardless of which approach you go with and that's just one of the reasons dealing with this cancer is so unpredictable. I wish I had that crystal ball.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Apr 2014
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One question you should ask is: how much raditation can I receive if I don't have surgery, and how much can I receive if I have surgery. The doses can be very different and may help you make your decision. I hope this helps.


Husband: HPV16+ SCC base of tongue 2 nodes+
7 Erbitux doses, 70 gry completed June 9,2014. Now we wait!
Joined: Jun 2014
Posts: 86
ak123 Offline OP
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[quote=Anne-Marie]After reading all of the above, and because tongue cancers tend to be aggressive, I would lean towards surgery and then IMRT radiation. I have no medical background but here are some questions I would be asking the doctors:
Re Opinion #1:
Since this is not a CCC I would have more confidence in the opinion of an ENT from a CCC.

The questions I would have the following questions to ask of the #2 and #3 doctors:

1. Is a tongue dissection another word for a type of Biopsy where only a portion of the lump is removed for analysis?

(see OCF link to detailed info on Biopsy types here:
http://www.oralcancerfoundation.org/discovery-diagnosis/detailed-biopsy.php

2. First opinion was Stage 1 which seems to indicate very early stage.
How does the staging as well as the depth of 0.7mm figure into to the type of treatment recommended?

3. Is it recommended that surgery be to remove existing or remaining tissue from the tongue, the lymph nodes or both? Why?

Re the 2nd opinion Dr. Jacobs (Northwestern Univ) recommends radiation therapy alone (IMRT).

4. Why only radiation? Does he think the earlier neck dissection being Stage 1 removed all visible cancer cells?

Re the 3rd opinion Dr. Spector (Univ of Ann Arbor) who recommends
tongue surgery with neck dissection, reconstruction of tongue and radiation.

5. Is the re-incision/surgery to remove any possible remaining cancer cells?
6. Is the neck dissection to remove lymph nodes?
7. Why is rebuilding the tongue necessary? Is the staging still Stage 1?
8. When Dr. Spector said �radiation is not really as effective � did he mean Radiation alone? My understanding is that Surgery takes care of everything they see during surgery and radiation following surgery takes care of whatever not seen during surgery.

Maybe you and your brother could make a list of all the questions you both have, type them up with copies for when you next see the doctor. Or you could fax them to the doctors to be able to prepare their answers for you. That's what I have done and have had good results from the doctors I have dealt with. Making a list can lessen any feelings of confusion and helps to "release them from your brain".


[/quote]

Hi Anne-Marie:
I am going to answer all of these questions as best as I can. (we will be meeting with the Karmanos doctor tomorrow morning along with his tumor board).

1. The tongue dissection they are referring to is doing another surgery of removing the tongue.
2. The depth changed things a bit because even though he is a stage 1 all doctors agreed that the depth worried them and thats why they all recommended more treatment.
3. The tissue on the tongue is clear but the third doctor recommended removing more clean tissue because the margins were close. Also, he recommended the neck dissection to remove lymph nodes. the reason why he wanted to remove lymph nodes is because he wants to properly stage him.
4. He recommended only radiation because he thinks that only 1 out of 5 chances would a lymph node be involved. My brother has not done a neck dissection yet.
5. Yes.
6. Yes.
7. He wants to remove a lot so he thinks rebuilding will be necessary. I will ask the 2nd part of the question to the doctor.
8. Yes, thats what he meant and thats why im confused because one doctor told me that radiation will kill remaining cells but Dr. Spektor says it will not be as affective.

I love all of your questions and tomorrow morning I am going to use them all! thank you.


22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue
CT scan clear LN 6/20/14
HPV-, non-smoker
R tongue, right hemiglossectomy Surgery 6/24/14
(Not reoccurrence but went to NCCC instead
R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14
PT1N2B.3 positive lymph nodes out of 13
Extranodal extension present
9-15-14 IMRT (35x) & Cisplatin (2x) begun
10-21-14 peg in. 10-31-14 1 round of carboplatin
11-4-14 IMRT rx comp
3-27-15 Recurrent tumor in lymph node, L neck diss.
10-29-15 brother passed away, 23 yrs old
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Hope everything goes well with your brother's appointment today. Since my son's surgery experience was removal of only one sixth of his tongue, perhaps someone else here with more experience than my son or I have, can comment on your -

#1 question re: <<. . . doing another surgery of removing the tongue>>

I think I would be asking "Does this mean the whole tongue depending on what they see during surgery or is there a chance that only a portion of the tongue can be removed ?" And if this is the case, I would ask what is involved in the rebuilding procedure and recovery.

Stay close and let us know what happens today. smile









Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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