| Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I know in talking to my ENT, he will not be doing a FN biopsy. he will actually be removing the entire cell and some healthy cells surrounding it to ensure complete removal. It will be done under general anesthetic as my last one was. Would I be too pushy to tell him to go ahead and take out the lymph nodes as well and test them?
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Sep 2009 Posts: 229 | I'm usually all for doing what the surgeon needs to do while I'm asleep. I make sure my surgeon and my husband are on the same page before I get put out....basically, don't wake me up so I have to do this again.
I'm thinking (IMHO) I would prefer just the biopsy. Once you know what it is, make a plan and go from there.
Patty 08-10-09 Partial Glossectomy w/suprahyoid neck dissection SCC T1NOMX Stage I | 46 years old
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | That is the problem, he won't just do a FNA. Even with my last surgery, he put me all the way out and removed whatever it was. He did not think it was cancer then either, and it turned out to be. I can tell he is unsure of himself at moment. He did tell me to call as soon as I began to have pain again and we would schedule surgery right away. I am very comfortable with this Dr. I can tell he is not wanting to do any unnecessary surgery. Anyway, I still have not decided what I am going to do.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Sep 2009 Posts: 229 | When I meant do the biopsy, I meant go in and take a piece of the tissue and send it out to pathology. As I re-read, that wasn't even an option.
It's really tough making these decisions, especially when your comfortable with your doctor. I only know that I couldn't wait that long with all that I've read about oral cancer. I don't think any surgery is unnecessary when you're dealing with a possible growth.
Sorry......I don't mean to be harping. It's easy for me to be a back seat driver. *smile*
Patty 08-10-09 Partial Glossectomy w/suprahyoid neck dissection SCC T1NOMX Stage I | 46 years old
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Angelia,
A biopsy is what is in order here. The entire area does not have to be removed. This can be done with local anesthesia as there is no need for general anesthesia. I had this done, as well as many, many OCF members. There is also no need to remove the lymph nodes at this time.
I'll be blunt. You may like this ENT, but if he isn't willing to do a biopsy, then you should consider going to another ENT or to an oral surgeon that will do this and get you the results in no longer than a week.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 |
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Oct 2009 Posts: 12 Member | Member Joined: Oct 2009 Posts: 12 | My ear pain comes and goes but it only goes away for maybe a day or two, not any longer unfortunately. So it may come back. I hope it doesn't. Get the biopsy done ASAP, it's much easier knowing than it is worrying.
SCC dx at age 21 4/03, partial glossectomy and partial neck dissection 4/03, IMRT 6/03, cancer free 9/03 HBOT 7/04-10/04, cysts on thyroid 6/06, biopsy and throat endoscopy 4/09, dead bone removed from jawbone 9/09, fibula free flap and partial mandible removed 12/09 6 yr survivor
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Angelia
My biopsies have both been at the hospital under general anesthesia although it was done on an out patient basis as my ENT likes to "look around" for cancer which you can't do with a FNA. Since you asked for out opinions, mine is to just do the biopsy. You can walk away and go home with zero complications unlike getting lymph nodes removed. A neck dissection is a very big step that may be totally unnecessary. The lymphatic system is there for a reason. Hoping for great results for you 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
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Thanks for all of your opinions and support. I know that you all may think I am playing with my life here, but I have yet to decide if I will wait the four weeks or not. I have tonight to continue thinking about it. I know my husband and I continue to talk about it, and I keep thinking why don't we go ahead and take it out. On the other hand, I hate to have surgery that is unneccessary. The one thing that has me more worried than not is that my jaw has begun to hurt when I open my mouth to eat. I will probably call him this week and see when we can do the biopsy. I just hate to feel like I am worried over nothing. I feel like I am the only one who has ever had problems making decisions like that. I also can not stop thinking about what I need to do at school, and what ifing myself crazy. UGH
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Angelia
You have just said "I just hate to feel like I am worried over nothing"
The only way you will find out whether you are worrying over nothing is to get a biopsy. That is the only way to solve your problem. Our own dentist, Dr Jerry has made that very clear.
Whether your current ENT does it or you go to another. The sooner you get it done the better.
If the biopsy is clear you will be able to get on with it and stop making yourself sick with worry or alternatively if, and I say only if there is something wrong, the doctors can get on with fixing the problem sooner rather than later.
Karen
Last edited by Karen Rose; 10-11-2009 04:00 PM.
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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