| Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | While you are waiting for thursday do set up a second opinion. However I looked it up and you are at a CCC - so assuming he is a top ENT there you should be in good hands. My advice is have someone with you since it's probably quite overwhelming when you go there. They can take note and go over Anything you might have missed. I suspect he is probably giving you minimal information to lighten the blow because from your initial post it seemed that he was playing light with the reality. Some drs will do that to make you less panicked - I wasn't sure since I didn't know where you were being treated. It's not all doom and gloom. Please don't take it that way. This cancer can be scary - what you need to do now is focus on getting rid of it. Ideally for your type of cancer (oral tongue - likely non HPV) things after the biopsy should move like this. 1) scans - either ct- pet - or MRI (or a combination of them) I had two cts - a head and one chest - and an MRI 2) then likely - surgery - ideally they will remove your tumor - and Do a neck dissection (this cancer can seed to the nodes and not be detected on a scan until they are a certain size. ) Often when they just remove a tumor - a month or two later a node will pop up and then another surgery is necessary. Ask your dr about this. If he is experienced he will have seen your type of cancer and know from experience how it moves Normally in your type of scenario. Based on that he can predict the potential for seeding etc. (Hopefully) 3) Based on the pathology from the surgery they will determine whether further treatment is needed. Usually the qualifiers for this are - more than one node involved - extra capsular extension (the cancer has broken out of the node and invaded the surrounding tissue) - peri neural involvement (the tumor is deep enough to hit a nerve) - and I believe they take into consideration the aggressiveness of the cancer. It doesn't have to be all of these things - sometimes only one or two - again - your surgeon will have seen the outcome of your scenario before and know what should be done next. If it is determined to be HPV related (highly unlikely based on the location - you described) then they often skip surgery - however that is often based on location and invasiveness. Occasionally even if it is not an HPV related tumor, they will choose not to operate - often this is because it is too large a tumor and removing it would have major impact on quality of life and overall function - as far as I can tell based on your description. - this does not apply to you. Finally they choose to do a chest ct - because after the nodes that tends to be a top location for spread. Hopefully some of that helped - ps: ct results are often available with 24 hours - don't wait a week to see him/or her again. You want this dealt with ASAP... Hugs. And good luck Thursday.
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 2014 Posts: 20 Member | OP Member Joined: Apr 2014 Posts: 20 | I wanted to see him sooner and to have the cat scan do e before Thursday. The receptionist got angry with me and said nothing will change by Thursday. And she knows this how?
KimberlyAnn first diagnosed 3/31/2014
| | | | Joined: Apr 2014 Posts: 20 Member | OP Member Joined: Apr 2014 Posts: 20 | He told me that only partial tongue will be removed. Left side part. It's 5mm in size. He said I prolly won't have to do speech and swallow therapy. I rather be told the truth. When I got home from va. I felt pretty good. After all the first dr said not worry. It's probably not cancer. Then oh sorry it is. Awful. I need to pray today again. So I don't lose my mind.
KimberlyAnn first diagnosed 3/31/2014
| | | | Joined: Apr 2014 Posts: 20 Member | OP Member Joined: Apr 2014 Posts: 20 | Cheryl, thank you. Very much.
KimberlyAnn first diagnosed 3/31/2014
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | I know it's a mind blowing reality when it hits you. It's good your having your ct before Thursday then you will have some answers by then. Part of the trauma is the wait. And his secretary has likely never been on your position so she simply can't understand. My questions were how soon ? Every time I talked to one of my drs. It is superficial... 5mm is fairly small, but at the same time it's cancer and I had a friend in here (she's doing well btw) who also had a superficial cancer. Her dr. Did everything... Neck dissection even though nothing showed on the scan - one node was positive and had ECE (extra capsular extension) so he sent her for rads. A lot of drs would have said.ll clear scan no neck dissection - but hers had a feeling and he as right... Experience with this disease is very important when it comes to choosing a dr. I know it's not much help but look at it this way... It is what it is - you are going to do whatever you can to fight it. Educate yourself - and then do things you enjoy. Dont make this the focus of your life. Go for coffe or tea, visit friends live your life. Worrying will not change things - face what you have to when you have to and give the disease your attention when you have to but don't let it take any more of your joy. Hugs.. You will get through this.
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 2014 Posts: 20 Member | OP Member Joined: Apr 2014 Posts: 20 | (((Cheryl)))) hugs back to you. Thank you so much. I am getting my cat at 8 am on Thursday and at 9 he said he will have the results and have a plan. I am just not thinking clearly. She prolly meant no harm, I am just on edge and not thinking maybe. I keep going from extremes. I am trying to be positive, but I keep failing. It works for awhile. I am looking into support groups for me and my family. In person...and I may actually start taking Xanax. I am very anti drug and never took these long, even with my wrist panic attacks, I refused. But now, I don't know what's going on with me. I can't seem to feel better for too long. But I am trying... I am praying. Thanks again Kimberly
KimberlyAnn first diagnosed 3/31/2014
| | | | Joined: Apr 2014 Posts: 20 Member | OP Member Joined: Apr 2014 Posts: 20 | Bart, thank you. It was superficial but not anymore. He said stage one or two but I still need my cat scan done, will be this Thursday. He mentioned having to take out my modes. Maybe he can tell? Not sure. Upmc is a ccc. I decided that with these two opinions, I am going to go with this guy, upmc. I did feel confident in him, I think I am overthinking things, getting too upset maybe. Thanks again, Kimberly
KimberlyAnn first diagnosed 3/31/2014
| | | | Joined: Apr 2014 Posts: 20 Member | OP Member Joined: Apr 2014 Posts: 20 | It was superficial 10 days ago, then last week he said his findings are that it's squamous cancer and not superficial;(
KimberlyAnn first diagnosed 3/31/2014
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | It was always squamous cell carcinoma either way, even if it was superficial, another word for it not being invasive, which is called carcinima In Situ, when the cancer does not break through the membrane cell to spread. If it does, it's then called invasive carcinoma, and can spread.
I hope this helps, and good luck with everything.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Paul is right about the insitu vs invasive. A lesion can be small but still be invasive. This is why this cancer is so tricky. I wouldn't get too caught up in the staging. While on some level it is important to know that. To me a better indicator is its differentiation, and nodular involvement, and amount of time from the appearance of the lesion to possible spread to the nodes. This is a good indicator of how aggressive this cancer is.
I only say this because knowing this other information will indicate what potential treatment you will likely go through and whether your dr. Is being aggressive with his treatment.
Not that I think there is ever overkill with treatment (frankly no one ever complained of getting too much treatment - but some have complained of not enough)
Invasive or not though... I always say push push push. This is cancer you want it dealt with by a top dr. And as quickly as possible. Take care.
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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