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#195221 - 10/11/17 11:15 PM Re: selective neck dissection [Re: Mary DeLongfield]  
Joined: Sep 2017
Posts: 10
Mary DeLongfield Offline
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Mary DeLongfield  Offline
Member

Joined: Sep 2017
Posts: 10
I saw the 3rd ENT just to see what her opinion is. Thank goodness my neighbor drove me there (Simi Valley, about 30 miles from my home in Santa Clarita) She said that she thinks the neck dissection is not necessary (she had all my lab reports from biopsy and hospital surgery) and doctors' notes. What she proposes is to follow up with an exam every 2 months for one year and before first exam in December, to have another PET scan. Then years two and three, exam me every 3 to 4 months. However, I am very anxious to see the oncologist next week......but it made me feel better as 2nd ENT doctor said if I had the neck dissection and remove the lymph nodes. I had an 80% chance of survival and a very small chance if I did not do it. I felt very discouraged and felt like he was a salesman trying to sell me a car. Bad vibes.

#195222 - 10/12/17 01:16 AM Re: selective neck dissection [Re: Mary DeLongfield]  
Joined: Jul 2012
Posts: 2,994
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
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Joined: Jul 2012
Posts: 2,994
NYC
I'm glad to hear your due diligence in getting not just a 2nd, but 3rd opinions! To me, the more the merrier, but you'll find you can get different answers from as you found out.

I read through some of your posts, and would be nice to have copies of your surgical reports, biopsy pathology, etc. but you can always get them. I find it can save time, and sometimes money having your own copies, and often show them to all my doctors, plus you know what it says such as tumor margins, depth of Invasion, diameter, tumor grade etc. and can better advocate for yourself.

I wonder why the ENT wanted to do re-surgery on the tongue if the original surgeon got everything, including clear margins? There might be some negative features he or she wants to get?

Elective neck dissection for the oral cavity and tongue in early stage vs watch and wait has been controversial, but I've seen reports where it increase rate of survival by approx 12% and reduce chance of recurrence by 55%, and is being recommended for the new treatment of care. I always recall for head and neck cancer that the key to survival is controlling the nodes.

As far as the neck dissection, there are several types such as the selective, modified radical and radical. I've had five of them, three that were radical, and some of them were the easiest part of treatment I had. I had no mobility issues until my 5th radiation treatment, that's not the 5th day. There is usually more mobility issues from a radical neck dissection, which is used less often these days, whereby the neck muscle is removed. The other surgeries preserve it. As with any, rehabilitation and stretching helps.

I understand you're going to see an oncologist next week, which is good, but chemo is usually not given on its own. It can to reduce tumor burden to sensitize for radiation such as induction chemo, in conjunction with radiation. Maybe your oncologist will be more knowledgeable about the neutrophil to lymphocyte ratio, NLR, in early stage tongue cancer pre-treatment, surgery, and above 2.95 may reveal an invasive tumor, positive lymph nodes, PNI, indicating need for aggressive treatment such as an elective neck dissection.

I hope this helps


10/09 T1N2bM0 Tonsil
11/09 TPF IC 6 Months Hosp Tx Stopped
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap Graft IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Segmental Mandibulectomy Fibular Free Flap
04/17 Regraft hypergranulation Donor Site
06/17 Myocardial Infarction






#195227 - 10/12/17 06:34 PM Re: selective neck dissection [Re: Mary DeLongfield]  
Joined: Sep 2017
Posts: 10
Mary DeLongfield Offline
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Mary DeLongfield  Offline
Member

Joined: Sep 2017
Posts: 10
Paul, Thank you for your feedback! It looks like you have been through a lot, you are a fighter!

I do have one more question: I attend weekly meetings that are sponsored by the American Cancer Society, have gone to 4 of them so far. We share our stories, and when I shared mine, the group was surprised that I was not referred to an Oncologist yet, only seen by ENT doctors. I have an appointment with an Oncologist in one week (asked for referral from my primary care doctor as I have HMO insurance thru Medicare). I belong to a medical group where they have a patient portal and all the doctors in this group can see everything, including test results, in the computer portal. My question to you is: do you think an oncologist has more knowledge on tongue cancer than an ENT from all of your experience?

#195228 - 10/12/17 07:12 PM Re: selective neck dissection [Re: Mary DeLongfield]  
Joined: Jun 2007
Posts: 9,716
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
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Joined: Jun 2007
Posts: 9,716
PA
ENTs specialize in ear, nose and throat diseases, defects, etc. An oncologist is a specialist in cancer. Both physicians should have the knowledge needed to help you. Not all ENTs are the same some treat mainly childrens hearing problems and put tubes in their ears. You need an ENT who treats oral cancer patients. Make sure whatever oncologist you go to has treated many OC patients. We're a special breed! Unfortunately the most common type of OC, squamous cell carcinoma (SCC) does not respond to chemo by itself. The tumor may shrink but chemo alone will not eliminate the SCC. The caliber of oncologist you go to is directly related to the quality of the hospital selected. The top oncologists are found in the comprehensive cancer centers (CCC's) and other top rated US facilities. Yes, it really does make a difference! All you or any patient can do is find the very best care you can and hopefully your medical team will eliminate the cancer for good.

Best wishes Mary!!!


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
#195230 - 10/12/17 08:54 PM Re: selective neck dissection [Re: Mary DeLongfield]  
Joined: Jul 2012
Posts: 2,994
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 2,994
NYC
Mary,

Christine answered your questions best. I don't completely know why you weren't referred to an oncologist, but can guess since certain stage, usually early stage, no clinical nodes or one, oral cancers can be treated by resection with or without a neck dissection. Depending on the pathology, number of nodes cancerous, there may be a need for chemo recommendation, and that's where the oncologist comes in. If your center has multidisciplinary care, your case is usually presented to the tumor board where all the doctors and specialists in head and neck cancer attend, including the oncologist, and agree on your treatment.

I've had oncologists that specialized in head and neck cancer, and nice to see them know about this disease when we often have to educate many healthcare professions, including doctors not associated with this cancer, which just happened to me yesterday. It's hard to say who has more knowledge. I had a radiation oncologist with surgical background who I thought was the best.,I guess each has their own area of expertise. Sometimes there seems to be one person directing your care, and have been through each from Medical oncologist to ENT to radiation oncologist depending on your need.

Good luck next week


10/09 T1N2bM0 Tonsil
11/09 TPF IC 6 Months Hosp Tx Stopped
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap Graft IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Segmental Mandibulectomy Fibular Free Flap
04/17 Regraft hypergranulation Donor Site
06/17 Myocardial Infarction






#195262 - 10/18/17 03:56 AM Re: selective neck dissection [Re: PaulB]  
Joined: Sep 2017
Posts: 10
Mary DeLongfield Offline
Member
Mary DeLongfield  Offline
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Joined: Sep 2017
Posts: 10
I have a friend on Facebook and we became friends thru both of her and I having oral tongue cancer, she had a PET scan in late September and has a team of doctors, ENT and Oncologist and I think an oral surgeon. They all got together on a "tumor board" (meeting?) Her PET scan came out clear and she was diagnosed with tongue cancer in early September, just as I was. She had the neck dissection, at their advice, to treat it aggressively, just as my 2nd ENT wanted to do, and remove some lymph nodes (not sure how they determine which are clear and which are cancerous, so they know which ones to remove and which ones to keep once they open your neck?) Well, my friend was in the hospital for one week (the second ENT I went said I would be in the hospital 2 or 3 days), and posted pictures of her post surgery in the hospital with "Warning Graphic Pictures" at the top.
She was released today and her post on Facebook says: " I was released from the hospital today, but unfortunately the biopsy results were not what we hoped for. Two lymph nodes in my neck were cancerous, so chemo and radiation is in my future shall I decide the direction I want to take. I am devastated."

Now I am really more confused as the ENT (#2) insisted a selective neck dissection would be the best treatment, like it was a miracle cure to stop the cancer from invading my body should it ever return! She had a PET scan about 3 or 4 weeks ago that was "clear" and now they do surgery to remove them and they are cancerous.
Can anyone explain this why the surgery did not take care of removing the "pathways" to block the return the cancer?? Thank you for all your help and sharing your knowledge with me !!

#195266 - 10/18/17 10:41 PM Re: selective neck dissection [Re: Mary DeLongfield]  
Joined: Jul 2012
Posts: 2,994
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 2,994
NYC
Mary,

I'm not a doctor, and not familiar with your friends case other than what is said, but Penn State surgeons have become the worlds first to test a glowing dye for cancerous lymph nodes. There are other fluorescence lights, and dyes used during surgery, but not sure if the would applicable for lymph nodes other then what I mentioned. Usually they remove the lymph nodes by a lymph chain or levels like they do in neck dissections. I believe called en bloc, meaning altogether at the same time, so there is no cancer seeding also.

During surgery, frozen sections are often obtained during surgery to get clear margins, but all the biopsied tissue are sent for further analysis, which can take several days or even a week. That has happened to me, surgery was clear, but the final biopsy showed cancer cells, and other negative features such as perneural and lymphovascular invasion.

No scana are 100% accurate, or can prove cancer, only a biopsy can, but Pet scans are pretty accurate in the 90% range for certain scanning aspects, and depending on location, which can go as small as 5mm. Maybe your friends tumor was too small or other things were done that can effect a Pet scan highlight (SUV). Scans are also only as good as the person reviewing them, and sometimes patients even doctors send them out for further review.

There are about 300 lymph nodes in the head and neck, most which are microscopic, and everyone is different in the amount and location of such. As far as your friend, the cancer could have already been there microscopically or the cancer found other pathways to travel, and just taking a guess. I know, I had cancer 7 times! In the primary tonsil, and 7 tines were in and out of the lymoh nodes. After my radical neck dissection, my 3rd cancer, cancer was found in the neck muscle too, and later surgeries in lymph nodes in areas where I had a radical neck dissection in level ll-V, and other times in tissue that were not lymph nodes, and basically free roaming cancer.

A negative feature with neck dissections is it disrupts the pathway such as the lymph flow, so cancer can find alternate pathways if cancer was to return or was reminiscent lets say to the primary. Basically, cancer can go anywhere, but it usually has a predictive pattern with the lymph flow, and reason for neck dissections as to control the gateway to distant metastases. As I once heard, besides the primary, controlling the nodes is the key to survival.

I hope this helps
.


10/09 T1N2bM0 Tonsil
11/09 TPF IC 6 Months Hosp Tx Stopped
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap Graft IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Segmental Mandibulectomy Fibular Free Flap
04/17 Regraft hypergranulation Donor Site
06/17 Myocardial Infarction






#195267 - 10/19/17 12:49 AM Re: selective neck dissection [Re: Mary DeLongfield]  
Joined: Sep 2017
Posts: 10
Mary DeLongfield Offline
Member
Mary DeLongfield  Offline
Member

Joined: Sep 2017
Posts: 10
Yes, It makes perfect sense. No doctor, lab technician, or test Like a PET scan is perfect. I just felt so bad for her as she had a rough surgery and now it sounds like they have to re-open her neck again? She was in the hospital for a week, they did the removal of the cancer tumor on her tongue and the selective neck dissection all at once. She is so depressed, I gave her this website to go on and I hope she goes on it. Without this website, and my weekly American Cancer Society discussion and share group, I would feel so helpless too. She had it done back East. ( I am in California).
Did you have to have another neck dissection after they found cancerous lymph nodes in your post-surgery biopsy?
You are a very brave man, and thank you for helping me!

#195268 - 10/19/17 01:24 AM Re: selective neck dissection [Re: Mary DeLongfield]  
Joined: Jul 2012
Posts: 2,994
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 2,994
NYC
Yes and no. I've had 5 different neck dissections, including IMRT radiation, IORT internal radiation during surgery twice, IMRT chemoradiation, and Proton chemoradiation for my recurrences.


10/09 T1N2bM0 Tonsil
11/09 TPF IC 6 Months Hosp Tx Stopped
01/11 35 IMRT 70Gy 7 Weeks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap Graft IORT 12 Gy
10/12 25 IMRT 50Gy 6 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Segmental Mandibulectomy Fibular Free Flap
04/17 Regraft hypergranulation Donor Site
06/17 Myocardial Infarction






#195269 - 10/19/17 01:57 AM Re: selective neck dissection [Re: Mary DeLongfield]  
Joined: Jun 2007
Posts: 9,716
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: 9,716
PA
Mary, Im very sorry to read about your friend! Hope she will join our family and get the extra support it sounds like she needs.

I think you should write down all your questions and have a very long discussion with your doctors. No 2 patients are ever exactly the same. Even if you have 2 people who are the same age, from the same area, same sex, tumor location, size of tumor, cancer type and stage you still have 2 individuals who will respond in their own unique manner to surgeries, recovery, medications, etc. What isnt factored in is each persons medical history, family history, DNA, etc. Its just not possible for any of us here to know why your surgery didnt remove the "cancer pathway". We can do our best to answer questions but we dont have years of medical school, clinical practice, the complete family history, medical records, or the patient right in front of us. Even if we had the complete family history, medical records and the patient we arent medically trained to know what to do with all that info. Paul has done a very good job of explaining things, its a much better job than I could have done. But in the end its still not the same as if your own doctor explained it all. Plus when questioning a previous surgery, the surgeon and qualifications of every person that supported him and cared for you during your hospital stay get thrown into the mix making complicated answers something we simply are not qualified to give. I also suggest since you have many questions and are unsure of several things before you do anything get the second opinion (or third) at a CCC that is not affiliated with any doctor you have already encountered. The confusion over the second ENTs recommended neck dissection well after your surgery needs to be better understood prior to you starting any further treatments. Dont be afraid to ask questions... the doctors work for you and should want you to know everything thats going on and why its necessary. Taking a friend or relative along to take notes or just for moral support can also be a big help. You can ask the doc if they mind you recording your Q&A so you can go back later and replay it if you forget something.

When I was going for my big surgery in 2009, I met with my doctor several times before the surgery. When it got close to the date I still had many unanswered questions. I knew the odds of beating OC for a 3rd time in 3 years were very slim and I had serious doubts if I would survive. I scheduled another appointment with my doc to get more info and have all my questions answered. That was one of the very best doctors appointments Ive ever had. My doc cleared his busy schedule, had me come in as his last patient of the day and he never once even glanced at his watch. He made certain I was comfortable and understood everything I questioned. That appointment was well over an hour my doctor explained everything in great detail and made certain I understood everything. I think an appointment like that would help you tremendously. Once you better understand everything Im sure you will feel much better about your upcoming treatments. Just knowing why is a huge help, at least I always found it to be very beneficial.

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
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