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Ben

Neck dissection & lymph node removal is another area where IMO the general tenor of discussion on OCF needs more balance. FACT: It's a bad thing to have healthy lymph nodes taken out.
I've remarked before on how sad it is to read posts celebrating having 10 or 20 or more lymph nodes taken out with 90% or more of them turning out healthy.
It reminds me of the women who advocate having their entire breasts removed, even ones without cancer, because they'd rather be "safe than sorry". Of course everyone is entitled to acting on their own risk level.
This is just a reassurance that you may only have needed 3 lymph nodes taken out.
I was lucky that my surgeon kept up on all the new studies and she was confident that the radiation and chemo had taken care of the two lymph nodes that had had cancer. Other doctors do neck dissections automatically because that is what they taught them in the 20 century. She explained how important it is for a cancer survivor to have a robust immune system and how the lymph nodes are a major factor in that.
When the cancer did come back and I had to have massive surgery, she did recommend a modified neck dissection. Sure enough, the pathology report showed that those two lymph nodes were now totally necrotic tissue with no evidence of cancer. I did lose multiple healthy lymph nodes on all 5 levels but it's a given that neck dissections always involve such destruction. OCF has a good description of the types of neck dissection: OCF ND More doctors are going the selective route as it seems your doctor did.
Again, this is a subject like PEGs that people feel strongly about and one on which Doctors and surgeons disagree. In the end, you have to trust your doctor. If their doctors believe in taking out as many lymph nodes as possible, then that becomes some posters belief also. It doesn't make it true however for other patients. Just some reassurance.
Charm

Last edited by Charm2017; 01-30-2012 07:11 AM. Reason: added OCF link

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Yes do check out their history with oral cancer, a ccc is usually the best choice when it comes to any kind of cancer, because they have seen it all. I get that sometimes with insurance it's hard to go where the best treatment is available but here's the reality - oral cancer can spread rapidly, if you have a place that that ocassionally treats oral cancer they may be excellent, and know their stuff, but, why settle for a "may" ? why risk your life? If you know a ccc is the best place for treatment and that they do see your kind of cancer all the time and know how to treat it, then is this not the better choice? Even if you have to travel or pay extra. You can't put a price on your life or for that matter a time frame. I have two cancer treatment facilities within 10 minutes from me. One of which is my home hospital. In fact i personally know the head of know of them! They have good reputations etc. but I also have the top one in Canada - and one of the top 5 in the world - 20 -45 minutes away (depending on traffic) now everyone wants to work or train at a top hospital - but they hire the best of the best in their fields and give preference to the top students. They have a reputation to up hold. Which would you choose if your life were at stake? Will it guarantee me no recurrence? No - sometimes things just happen. However if I do end up with one I will know that I have done all I could prevent it... There really won't be any what ifs? Or regrets that I should have or could have done something differently the first time out, because i did what I could. smile
Good luck. Another thing - time is important don't let them take their own sweet time, push. Take fae.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Turns out the University of Minnesota is in my insurance network! And so is the University of Arizona, which is in the top ten. I have a friend in Tucson that might be willing to take me in for a couple of months. I will talk to my cancer team here in St. Cloud and ask them if they recommend me going to one of these places if it is feasible.

I gotta say though, going to Arizona and being so far away from my family during a time like this would be hard. And the University of Minnesota is only 70 miles away, but the idea of making so many commutes in the Minnesota winter is daunting. Stress-wise (even though I would not be driving), and just plain being able to make it at all to every appointment. I will ask the St. Cloud team to please level with me and try not to be biased on their opinion of whether I would be better off with one of these places instead of them.

Last edited by AvatarMN; 01-30-2012 03:14 PM.

-Ben-
Diag 12/21/11
T3N2bMX
Surg 1/17
5cm tumor left tongue pos. L tonsil neg. 17 l. neck lymph nodes, 2 pos w/extranodal excursion. 4 teeth neg
Tongue spec 5.9x3x1.8cm. Margins clear to 0.4-0.5 cm
2/20-3/27 27 radiation, 2/20-4/12 3 chemo.
Non HPV, lifetime tobacco, drugs, alcohol teetotaler
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Ben, it is your life, not that of your docs in St Cloud, nor of us on this forum. I'm so glad you checked that out. I understand your concern about the roads to Minneapolis.
Having lived in Tucson, I can assure you that it will be warm there.

Whatever you decide, we'll back you here. I/we just want you to get the best care you can within your comfort zone and insurance. I still think you need a second opinion regardless.
Your doctors at St Cloud should understand.
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of February, 2018
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Ben, if you havent already, contact the American Cancer Society. Let them know you probably will be needing some help with transportation. There are many volunteer drivers all over the country who will help you with transportation. I am one of their volunteer drivers in my area. I see all kinds of people with some only needing to go a few miles to others who commute to centers hours away. The ACS will even help you to pay for prescriptions and/or travel expenses up to $300. Where there is a will, there's a way! OCF is full of very important info that will help get you thru this phase of your life. People here really do care about each other, we are all in our own little club and we hate getting new members. If your current facility does not endorse you going for a second opinion that should be a big red flag to head for the cancer center.



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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Ben,
FYI - Coborn Cancer Center in St. Cloud reported treating 35 oral cancer patients in 2009 and in 2010. That isn't a lot.

Coborn is a CoC accredited community CCC, and their registry is well managed with a 96% lifetime follow-up rate, but I don't find the staff credentials all that impressive or specialized in Oral Cancers.

Source: http://www.centracare.com/specialty_centers/cancer/cancer_report_2010.pdf

By contrast, everyone I saw had extensive training at major CCC's and research institutes and the scanning, planning an IMRT technology was beyond cutting edge!

The capability and technology to diagnose, plan, deliver and monitor your IMRT is critical. Combine this with Chemo and having a team that knows how to keep you going WITH NO BREAKS in treatment is essential.

Many of the major NCI Designated CCC's can provide affordable temporary housing near or on the Medical Campus.

I understand money is a concern you have that I didn't (my insurance covered my treatments). My hope would be that you can find financial help to get you to a top notch CCC.

http://cancercenters.cancer.gov/



Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

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The wife of an OC patient posted this in February 2010 after her husband was diagnosed by an ENT. Since they live in New York City, several people here encouraged her to seek a second opinion for her husband at Memorial Sloan-Kettering, one of the top cancer centers in the U.S. She posted this after making an appointment there:

[quote=SusanW]The ENT guy said his practice (three guys) sees about one case of oral cancer a year. Sloan sees 3500. A bit of a difference. The strong message you guys sent me about where people should go is so important. I hope the word is out there.[/quote]
At the very least, get a second opinion from a large comprehensive cancer center (CCC) that sees a lot of cases of oral cancer; in Minnesota you've got the University of Minnesota Masonic Cancer Center and the Mayo Clinic Cancer Center, both NCI-designated CCCs. You may find that the treatment plan you get there is consistent with what St. Cloud is saying, or you may get recommendations that your local facility just isn't aware of because it either doesn't see a lot of cases or passes more complex cases off to CCCs. The local docs can help with arranging for a second opinion (and if they are hesitant, you should not be treated there), or you can call and make the appointment on your own. You do not need to ask their permission to get a second opinion.

Also, you can see the NCCN treatment guidelines here. And if you haven't done so already, look through the main part of the OCF website -- there's a lot of useful information there.


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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Hi there.. Also look into the university of Minnesota they may have local lodging... A lot do. It's a facility where you can stay Mon - Friday and maybe do the 70 mile commute on weekends only (perhaps family members or a group of friends can drive you back and forth ) - I know princess Margaret where I was treated has a lodging facility. this may be a good compromise. Also I'd like to state that BOT cancer responds more readily to chemo, and radiation. Oral tongue cancer can often be more aggressive, and and harder to treat than base of tongue - as BOT is caused by HPV in most cases - this being the case - often times BOT cancer is only treated with rads and chemo, but for oral tongue cancer removal of nodes level 1-4 is part of the standard. A friend of mine is losing her battle with this diseasea. Her cancer was in the oral mucosa - cheek initially (not HPV related) - the drs removed 20 lymph nodes, believing she was safe when the biopsy came back clear in all 20. After going home with no rads or chemo, she found a lump. Went back only to have another 20 removed - all of which had cancer. My dr told me in no uncertain terms.. I'm taking 40 out. I didnt argue - One was positiveI don't miss the other 39 smile and I'm glad theyre gone. I have some stiffness and loss of sensation. But other than that I'm okay. smile see what a ccc says If you can. Good luck!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Having weighed in early in al this, I have stayed on the sidelines lately. I hope that what you come away from after reading all this is that the people that have replied to you, actually care that you make good decisions. I don't think that any here have agendas nor facility affiliations that color their opinions. So the pushiness, to at least get a second opinion from another high quality institution is out of care not from some other source. Tough love perhaps.

There are HUGE disparities in healthcare in the US, something that until you are thrown into a situation like this you may never consider. They range from those with no insurance or job trying to find treatment (anywhere as hospitals for the most part are all run "for profit") , to those with insurance but in states that do not harbor cutting edge institutions, to people in HMO's that are constricted to seeing only those who will take the much lower reimbursement SOME HMO's are willing to pay (and make no mistake the best doctors get paid well), to people who are financially able to go to any institution in any state. There is no equality in health care. For having the most expensive health care system in the world, it is not applied equally to all of our citizens.

When you look at the US News and World Report on cancer hospitals that rates them, you get a rating based on survival statistics, modernness of equipment, education of doctors, number of doctors and nurses per patients and so much more. It is very unbiased. In general while some use the NCI designated institutions as quality, or the CCC system to judge them, I usually find that teaching institutions attract wonderful doctors who get paid well, are funded in a way that allows them to attract the best and brightest, as well as have the most modern and cutting edge technologies and equipment, and have (should the need arise) a great deal of FDA approved clinical trials being run there on experimental treatments and drugs, which is something not available to many hospitals. Of course those clinical trials are often last ditch attempts to beat the disease when standard of care (NCCN guidelines) treatments do not do the job.

Understanding all this, and getting your head around the idea that anytime your name and the word cancer are used in the same sentence it is usually not a good thing, or something that you should take casually, and lastly once all this is apparent - that a (any given) doctor is not equal to other doctors nor an institution or hospital equal to any other hospital, then there will arise the issue of NAVIGATING all this to your own optimum outcome.

I hope that what you get is that all of us want that optimum outcome for you, nothing more or less. While we have all had our own paths through this, and we have made both good and bad choices, and had varying degrees of health, difficulty, and long term quality of life issues after it all, we all have learned from that process, and have learned from each other. While there are still some disagreements between many of us, the one thing that the survivors who give of their own time freely for no compensation have in common, is that they come here to help those behind them on the path expecting nothing in return. While not doctors, nor experts, I would wager that the combined knowledge of people on this board, ABOUT THIS SPECIFIC DISEASE AND THE COLLATERAL ISSUES THAT ACCOMPANY IT, exceed that of many professionals in the industry who are not oral cancer specific doctors.

Like all the others, I wish you the wisdom and desire to make the best possible choices, and hope that your path through all this is as brief and successful as possible, with a rapid return to an active, happy, and normal life.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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[quote=Brian Hill]I am astounded that I actually dodged so many of life's bullets BEFORE I had cancer, that when I got it, it was the first time that I seriously considered that I wasn't the chosen one to live in perpetuity. [/quote]

Booooooooy howdy you can say THAT again!!!


Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]


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