| | Joined: Aug 2011 Posts: 78 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Aug 2011 Posts: 78 | Hi guys,
My husband went into meet with the surgeon again today and to get the face-to face pathology report feedback.
Radiation is definitely being recommended because of Perineural Invasion and the Island Invasion style of the tumor.
I was scared to death in the appt. He said that after radiation there is a low chance of reoccurrence- 10-15%, but that another aggressive surgery will most certainly cause severe functional issues. (would more than likely need to remove half of my tongue and I could lose my jawbone.) However- assuming that they got all of the cancer out and I have a successful round of radiation- this will hopefully not be something I ever need to deal with again. The odds will be in my favor!!
A couple of questions for those of you who have been through this all.
1- This doctor is not big on scans- should I demand a scan? He says that the human eye and touch are the best indicators.
2- Is it normal that the doctor had not spoken with the pathologist in advance of our meeting with him? He was going to re-verify a few things with her and discuss. But it seemed obvious that he had not yet spoken to her. This may be standard- I don't know.
3-Should I seek a second opinion at this point? Is it a futile exercise at this point? Should I just go ahead with the radiation?
I just want this to be over and done with- I want to be ensured that I am giving myself the best possibility of long-term survival as we all do.
My husband is keen to get a second opinion before we meet with the RO here in NYC on the 14th.
Also- any opinions on where to go for a second opinion? Is MA the very best? Any opinions would be much appreciated - I guess through PM.
Thank you so much. In case you can't hear it coming through this email- my mind is racing and I am nervous.
Thank you so much.
Sally
Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, Sally
were you staged as T1NOMO without a scan? While the human eye and touch are excellent diagnositic tools, they can only see so far.
My husband's ENT, RO and MO each encouraged a second opinion - I think getting a second option would be a good idea.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Aug 2011 Posts: 78 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2011 Posts: 78 | Thank you Maria!
Just to be clear- I had a partial glossectomy & neck dissection which is how they feel confident with the T1N0M0 diagnosis.
However- no scans.
Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Sally
I'm going with common sense. Touch and eye!!! I never heard that before. Hmm not big on Scans in my opinion a CT Scan tells a lot.
He hasn't spoken to the pathologist before your visit then how can he tell you anything?
I sure would get a second opinion. I wouldn't be too happy with what he told you.
I know you want to get it over with, get the best care....go for the second opinion. I know there is a list of Cancer Centers on the forum I don't know how to post them. Maybe Christine or one of the other posters will.
Keep us posted.
Take care,
Connie
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Aug 2011 Posts: 78 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2011 Posts: 78 | Thank you, Connie.
But also- he had the complete path report printed out- but he had not spoken to the pathologist who created the report. This may be standard. I just don't know.
I don't want to sound too down on things. The surgery was thorough- I am healing well, and he took lots of time with us as he has always done.
Thanks,
Sally
Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | They generally rely on the report - if they have any questions about the report they will contact them. The report is enough. However the scans are important. I believe a combination of both is important for diagnosis - protocol at my hospital is a baseline scan of head neck and chest - prior to treatment (radiation) then a comparison scan 3 mos after. I think I'm due for one in dec too. Scan will pick up something not visible to the human eye. For the longest time I had a lump in my tongue - to look at it - other than some redness - it wasn apparent! My first biopsy was negative - a ct might have picked it up! If nothing else it would have given the dr. Someything further to look into maybe even indicate a deeper biopsy. I would ask for a scan.  as for a second opinion I would definitely go with the radiation... It was recommended for me for the same reason (PI) plus I had a node with ECE - your radiation guy may also have a say on the scans and he may also be your primary go to man/woman. 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
| | | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Apr 2011 Posts: 267 | If you opt for the radiation, they should do a head and neck CT at your planning session. I had an MRI before surgery and it did not pick up my tumor. Thankfully it was clearly visible so we already knew it was there. Some doctors rely on scans more than others. My surgeon is not a big fan of the PET scan but I'll be getting one anyway since it's part of the protocol for my clinical trial.
I know how hard it is to make the decision to go ahead with radiation. My tumor board was split on whether or not I needed it. My surgeon felt that since my positive nodes were both tucked right up under my tongue and were totally encapsulated, that I didn't need radiation. The radiologist disagreed. If a second opinion will help you make your decision or help you feel better about the decision you've already made, then go for it.
Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 6 | Sally, please get a second opinion! Your doc may be excellent but scans are an important part of diagnosis and a tool for planning. Im pretty sure the scans are part of how the doctor gets the Stage. Here are some important links to help..... Here is a list of the best US hospitals for cancer.... http://health.usnews.com/best-hospitals/rankings/cancerHere is the list of National Cancer Institute approved cancer centers, along with other important info.... http://oralcancerfoundation.org/resources/index.htm#centersNCI Treatment Guidelines... http://oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf
Last edited by ChristineB; 10-04-2011 08:12 PM.
ChristineSCC 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 | | | | | Joined: Aug 2011 Posts: 78 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2011 Posts: 78 | Thank you all!!
Tracy- I think this sounds similar to what you are saying. From looking at Sloan's rads protocol- it looks like there will be a CT during set up. I know that we definitely want to go ahead with the radiation- but I also want to ensure that this is the most aggressive treatment and the most limiting for a recurrence!! For that purpose we will more than likely seek the second opinion.
I appreciate all of your feedback.
Sally
Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Sallyanne
As usual my post is somewhat contrarian. A skilled doctor can indeed detect oral cancer tumors by touch and feel. I had just gotten an all clear from a PETscan in October 2008 when one month later my ENT felt "something worrisome" in my mouth from pressing on the tissue during her exam. She was right, the cancer was back. Now all my doctors decided not to order any Petscans for me, just MRIs/CT combos.
With PNI, radiation is almost a necessity to avoid recurrence IMO (based solely on what my doctors all said about PNI). I was told that the most aggressive treatment would be to a combo of radiation and chemo, which I opted for after the recurrence even though I had had the "maximum" radiation and 8 weekly chemo the first time around.
You are almost to the finish line here.
Keep the Faith
Charm
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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