Hey everyone,
On Wednesday we went back to karmanos cancer center for a follow up which was Dr. Jacobs (2nd opinion). The tumor board walked In and said...

You had a relatively thick cancer the cancer has some signs of aggression in large number of patients not particularly you as an individual and it's going to the lymphatics it's crawling around the nerves and it's into the vessels. Recommendation group for re operation on the tongue ..Remove from forearm and neck dissection. After that operation we will know better about your cancer and you may need to do additional therapy which is radiation therapy or chemo radiaton.

The radiaton doctor was basically saying he wants to save the radiation because if it was to ever reoccur they want to keep it in their back pocket. If you don't want the surgery we recommend radiation and chemo to sterilize the area and also this would help to kill any spots that have potential to form cancer in the future but that's not guaranteed.

If the radiaton chemo does not work. When you operate then is the operation the same the answer is probably but I don't know for sure. The complication rate is going to sky rocket because of the prior radiatikn and chemo. There is going to be some problem with speech if I have to operate after chemo radiaton and it's not a free shot.

Your very young to be here so we want to keep many options open as possible.

Sounds like your brother's cancer is very aggressive. The issue I see (please correct me if Im wrong) is your brother already had surgery to supposedly take the cancer out. But its only a short time later and the cancer is still there. Was this meeting with the original team of doctors? I would not feel comfortable going back to them since the cancer is still there and growing even after surgery to remove it.

To me what the doctors are advising to do surgery and get as much out as they can and after that they will see where he stands. If they can avoid rads they want to because of his young age. That is understandable due to all the damage radiation does and the lousy after effects that will last a lifetime.

In my opinion (without a medical background) they need to hit it hard with everything to get rid of it all this time. Surgery first then radiation with chemo to make sure they got every single cell. Yes there is always collateral damage with radiation but it will clean up individual cells that can so easily get missed. This is especially important due to how the doctor explained the location of the cancer. It sounds to me like its growing and beginning to spread at least thats their opinion after reviewing all the tests and charts. Its time to decide which route to take and what team to go with and get this taken care of before the cancer grows even more.

Wishing your brother, you and your entire family all the very best with everything!

.In reading through the many posts, it seems tongue surgery was done, and due to the close margins, and lymphovascular invasion, LVI, a neck dissection was done with no further cancer found. Different consultations resulted in a number of further treatment options because of the negative prognostic factors found after tongue surgery, and is where brachytherapy came in, which is good for close or positive margins, PNI, perineural Invasion, and LVI.

At this same point, I've had similar findings, but with positive margins, and lymphovadcular invasion, LVI, and one with both LVI and PNI.

My treatment (s) were: 1. Neck Dissection to remove remaining cancer, 2. High-Dose Intraoperative Radiation Therapy, HD-IORT during surgery directly on the tumor bed (similar to brachtherapy) and 3. A pec flap to do additional radiation, and 4. 4-6 weeks after healing, additional IMRT or Proton Therapy with chemo, (Chemoradiation).

As you can see, my doctors incorporated everything or smilarly suggested for your brother, to deal with my persistent cancer. My scan was clear after my treatment in May.

As far as PNI and LVI, it's not cut and dry as far as its definate invasive spreading, but my doctors took no chances. They said without further Proton treatment (external beam radiation), Chemo, I stood a 70% chance of my cancer returning.

Each person, cancer, doctor, treatment, and outcome is different.

I hope this helps.

[quote=ChristineB]Sounds like your brother's cancer is very aggressive. The issue I see (please correct me if Im wrong) is your brother already had surgery to supposedly take the cancer out. But its only a short time later and the cancer is still there. Was this meeting with the original team of doctors? I would not feel comfortable going back to them since the cancer is still there and growing even after surgery to remove it.

To me what the doctors are advising to do surgery and get as much out as they can and after that they will see where he stands. If they can avoid rads they want to because of his young age. That is understandable due to all the damage radiation does and the lousy after effects that will last a lifetime.

In my opinion (without a medical background) they need to hit it hard with everything to get rid of it all this time. Surgery first then radiation with chemo to make sure they got every single cell. Yes there is always collateral damage with radiation but it will clean up individual cells that can so easily get missed. This is especially important due to how the doctor explained the location of the cancer. It sounds to me like its growing and beginning to spread at least thats their opinion after reviewing all the tests and charts. Its time to decide which route to take and what team to go with and get this taken care of before the cancer grows even more.

Wishing your brother, you and your entire family all the very best with everything![/quote]

Hi Christine,
Yes you are very correct the issue is that he already had surgery to remove the cancer. Afterwards we meet with a second opinion and third opinion (the second and third opinion are from comprehenesive cancer centers)... and they both agreed that they want to re-disect the tongue and do the neck dissection.

We met with our original surgeon on Wednesday for a follow up who wasnt at a comprehesive cancer center (wish I listened to you all in the beginning :() and he said that he would not re-dissect because he wants to save his tongue function and they he would still recommend brachtherapy. I was then questioning him like why would you recommend brachytherapy if its not a reoccurence? and so on? and he never mentioned that he would want to save the radiation option for the future like how the CCCs' did. Yesterday his office called us and said if we want to re-dissect he would love to do the surgery. I just wanted to say go fu** yourself. (sorry excuse my language but i am PISSED).

Christine we need to act fast! We just are so lost now on what to do. U of M- Ann Arbor is number #34 for CCC. I called Memorial Sloan Kettering Cancer Center in New York today as they are number #1 but they are closed. I am going to try to get him in Memorial Sloan or MD Anderson. Should I try to do that? Or go to U of M? I know you arent a medical expert but you are so wonderful and knowledgeable.

Having your brother treated at the BEST hospital is always a good idea, however, that is no guarantee of success. I believe that you've already had 3 opinions, and two agree that more surgery is necessary because they feel the cancer is aggressive and still growing and spreading. Getting an appointment at Sloan and MD Anderson will take more time, time that the cancer will continue to grow and spread. Is this in your brothers best interest?

If you do decide to contact Sloan or MD Anderson, do it on Monday.

Whoever does the surgery I would ask that they do "frozen sections" during surgery which helps make sure they get all/most of the cancer remaining. Again no guarantee, but just some added insurance that the surgery gets as much cancer as possible.

Radiation may or may not be necessary, but this is something that his doctors need to address after the next surgery and the results of any tests that they do. If radiation is necessary, he may be able to get this treatment at a hospital closer to home working with the doctors at a CCC.

I know that this is all very confusing and stressful for you and your family. I'm really concerned about delaying your brother's treatment anymore. Time is not your friend here! What does your brother want to do? Ultimately it is his decision.

Best wishes!

Just to add, it took me a month to get a reply from MSKCC. I needed to send them Everything from 2009-2012...such as scans, cd's, original pathology slides, pathology reports, surgery reports, colored radiation treatment plans, totaling over 400 pages, 26 discs, and so on before a consultation date would even be considered. During that waiting time, phone tag, sending more and more materials each call, I went elsewhere to another CCC for a consultation where my surgery, and treatment was planned! Eventually, after calling several more times, MSKCC told me not to come in for a consultation after all, which was ok with me since I felt I found a better place, and doctors, to treat me, and had a definite plan in place.

Each person's experience may be different than mine.

Ak123, I'm with everyone here saying your brother knows he has had surgery and that surgery not only was unsuccessful, it has spread cancer cells over the area that was exposed during surgery. I would get things moving sooner, rather than later. Many of us chase the beast because we are trying to figure out where it is. Your brother not only knows, but has additional information indicating it is aggressive. Time to get moving.

[quote=Susan2992]Having your brother treated at the BEST hospital is always a good idea, however, that is no guarantee of success. I believe that you've already had 3 opinions, and two agree that more surgery is necessary because they feel the cancer is aggressive and still growing and spreading. Getting an appointment at Sloan and MD Anderson will take more time, time that the cancer will continue to grow and spread. Is this in your brothers best interest?

If you do decide to contact Sloan or MD Anderson, do it on Monday.

Whoever does the surgery I would ask that they do "frozen sections" during surgery which helps make sure they get all/most of the cancer remaining. Again no guarantee, but just some added insurance that the surgery gets as much cancer as possible.

Radiation may or may not be necessary, but this is something that his doctors need to address after the next surgery and the results of any tests that they do. If radiation is necessary, he may be able to get this treatment at a hospital closer to home working with the doctors at a CCC.

I know that this is all very confusing and stressful for you and your family. I'm really concerned about delaying your brother's treatment anymore. Time is not your friend here! What does your brother want to do? Ultimately it is his decision.

Best wishes! [/quote] Hi Susan thank you! I have a question what do you mean exactly by .. Whoever does the surgery I would ask that they do "frozen sections" during surgery which helps make sure they get all/most of the cancer remaining. Again no guarantee, but just some added insurance that the surgery gets as much cancer as possible.

How is it more insurance? And is that meaning tell them to take extra tongue out?

Here's a link to the OCF website called The Biopsy Report: A Patient's Guide.

http://www.oralcancerfoundation.org/discovery-diagnosis/detailed-biopsy.php

This is an excellent summary of the biopsy process and terms. In the Specimen Processing section more information is given on frozen sections.

As I understand this procedure, during surgery the pathologist will examine tissue as it is removed by the surgeon, and if they see suspect tissue they will continue to remove tissue until they get wide margins of healthy tissue. This seems to me that it is to the patient's benefit to have this done, and will help minimize the amount of tissue removed.

I hope this helps!

[quote=Susan2992]Here's a link to the OCF website called The Biopsy Report: A Patient's Guide.

http://www.oralcancerfoundation.org/discovery-diagnosis/detailed-biopsy.php

This is an excellent summary of the biopsy process and terms. In the Specimen Processing section more information is given on frozen sections.

As I understand this procedure, during surgery the pathologist will examine tissue as it is removed by the surgeon, and if they see suspect tissue they will continue to remove tissue until they get wide margins of healthy tissue. This seems to me that it is to the patient's benefit to have this done, and will help minimize the amount of tissue removed.

I hope this helps![/quote]

Thank you so much for the link. I will read all about it tomorrow. We went to our appointment today regarding the surgery and he said exactly what you said that "during surgery the pathologist will examine tissue as it is removed by the surgeon, and if they see suspect tissue they will continue to remove tissue until they get wide margins of healthy tissue. This seems to me that it is to the patient's benefit to have this done, and will help minimize the amount of tissue removed"

I wish the first doctor did this so my brother wouldn't have gone through two surgeries but you live and learn right.