| Joined: Sep 2011 Posts: 9 Member | OP Member Joined: Sep 2011 Posts: 9 | hello to all, about 3 weeks ago i saw and ent for my thyroid i thought anyway.after he put the scope through my nose he stared putting his fingers down my throat and tongue. he said i had a lump on my tongue and it might be tongue base cancer.(i'm thinking in my head what) then he wanted me to get an altrasound.got it the next day. dr called back after 5 days and said he needed my old altrasound to look it over.also he said i had 1 nodule in a muscle and he would call me back in a day or two.
he did,t say anything about my tongue.so my wife and i decided to call unmc in omaha.we thought this is the best place around here for cancer and get a second opinion. we were really pleased with unmc so we decided to go there. they got me in this week and did another ultrasound with biospy.
my new dr said that he wasn;t real concern about my tongue because there wasn;t any mass on it. he did scope me and said my right tonsils was red and generously large.and my thyroid had some nodules in them so he biopsy it.
and wants me to come back in two weeks to biospy my tonsils,tongue. and nogule in the muscle of my lymph nodes.
if anybody has experienced any or all of these things..i would enjoy hearing from you. as to what i can expect.from someone whos been there .. thanks.
having a direct laryngoscopy & biopsy and ct scan....9-18-11 dr might take my thyroid out.
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Mark, It' the biopsy that tells the tale. All other information is speculation (even if it's well informed speculation from a great doctor. I'm suprised that you are being asked to wait two weeks for results of the first biopsy. They can generaly get that result in 72 hours. feel free in calling your doctor after 72 hours on any of these biopsies. They may have a fast answer for you.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Do not wait two weeks for an answer to a biopsy when you have these symptoms. This isn't the mark of a doctor or institution that has your best interests at heart. Tonsillar and base of tongue cancers are often connected to each other as they are both involved with lymphoid tissues. By this time you may develop a painless, fixated node on the side of your neck. But I am assuming that they did a through neck palpation on you. Also it's kind of surprising that they did an ultra sound instead of a CT scans that would have given them more information.
In these kinds of things (you will find this stated here often) you really have to be your own advocate, and press for things. It's your life, not theirs. Until you have a negative answer to cancer, this should be addressed with some sense of urgency.
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. | | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Hi Mark, you have already lost over 2 weeks and you are willing to wait for another 2 weeks for biopsy. I agree with Brian and in my honest opinion, please get those biopsy reports quickly and progress with treatment as required.
Last edited by Eshwar N; 09-09-2011 07:30 PM. Reason: as adviced by moderators
Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | @ Thank you, Eshwar!!
Last edited by Sandy177; 09-09-2011 07:35 PM. Reason: issue resolved
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Eshwar- I disagree with you on this. No one but the pathologist is going to put a "for sure" label on it. He is only going to do that when looking at a tissue sample under a microscope. ONLY in very advanced disease, could someone look at something and say yes that is cancer. (Then even my gardener could tell you its cancer.) Perhaps in your country there are lots of those very advanced cases finally getting to a doctor to be seen (Like you see pictures of on so many web sites from your country). Here in the US, even with late staging, the physical manifestations can be very ambiguous. Biopsy is the only means to know for sure. Please do not take this as any kind of slander to the medical situation in your country.
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. | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | @ Mark: I agree with everyone here about the amount of time you should expect to wait before getting biopsy results.
I would like to add that a tonsil biopsy is often a diagnostic tonsillectomy. A primary tumor may be deep within the tonsil and not visible on the surface. Before you undergo that procedure, a scan would be the best first step to locate a primary and any local/regional mets such as nodal involvement or distant metastases...and then, they can go after it surgically.
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Sandy got this right, a primary in the tonsil can be as small as 2mm. That is not a typo. At that size it can spin off daughter cells that travel rapidly through the normal lymph drainage system in the the cervical nodes and overnight you are moving from a stage one to a stage four when that happens. The only way to biopsy the tonsil is to take the whole thing, a 2mm primary won't even show up on a scan. I have a previous post up about a study we did with Hopkins that looks at this phenomenon
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. | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | When we were going through the process of trying to locate a primary tumor, we were told that it may be too small to find and that there is a possibility that it resolved on its own. J had both tonsils out and random oral cavity biopsies. They were all negative. We accepted that treatment could not be focused on an identified tumor. He began radiation over a broader field in conjunction with EGFR Inhibitor chemotherapy.
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Sep 2011 Posts: 9 Member | OP Member Joined: Sep 2011 Posts: 9 | the dr said something like can't do a ct scan with dye until he knows that the thyroid is not cancer'es because the thyroid might act up?or something like that.does this sound right.he said he would let me know monday on the thyroid. i'll be at the hospital also monday to talk to the anesthesia dr...i'll ask the nurse if theres any way i can get in sooner.
i'm having a(direct laryngoscopy with biopsy) can't read his writing very good.and what is it.thanks for any help...mark
having a direct laryngoscopy & biopsy and ct scan....9-18-11 dr might take my thyroid out.
| | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | @Mark: Direct Laryngoscopy is used by doctors to get a look at the back of your throat, your voice box (larynx), and vocal cord. The procedure usually involves flexible fiber-optic laryngoscope put into your mouth while you sit straight up sticking out your tongue. The doctor will spray local anesthetic into your throat to help with the gaggy feeling.
While viewing, they can perform biopsies of suspicious masses. I do not have any details about the biopsy part so waiting for other members to fill in. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Mark, I agree with everyone here so I can not say much to that. I do know that two weeks to wait for a biopsy is to long. Often times I have had my biopsy results back within 24 to 36 hours depending on who looks at it. OI know a few of the pathologists were I am at and one of them always looks at mine as soon as he gets it. Please do not wait two weeks to find out. At the very least just 2 days. Call and bug the nurses to find out if the results are in.
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: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Mark, please dont worry! I know its hard not to but cancer can be a thief. It steals your life from you by making it all you think about. I suggest making yourself extra busy right now. Take on some type of hobby or project to stay focused on. By dwelling on the ' what if's' it makes a person paralyzed by fear of the unknown. Please get out and go about your business. Push yourself to go do fun things with the ones you love. IF you have cancer and it is a huge IF, then when you are diagnosed will be the time to make your battle plan with your doctors. Its not possible to plan until you know. During my last biopsy wait, I went on a 25 mile bike ride with my 19 year old son. It would be the 3rd time I would be diagnosed with cancer and I was so afraid I would not live to see my children settled in life. I am their only parent and they were in my opinion too young to be out in life alone without any guidance. During that long week, I did positive things with my children to make some important memories. In my mind I was going to make it so if nothing else they would always remember my sense of adventure, the special things were shared and how we could always laugh no matter what. Luckily I am still here thru a third round of OC and we all have awesome memories. Most doctors and nurses will not give a patient their results over the phone. In Angelia's case she knows these people and is a well established patient which may be why they will tell her earlier and by phone. Ive always seen a week to get biopsy results as labs do not just the quick preliminary test for a fast result but they do some more in depth testing as well. Please always remember that every single person's experiences will vary from someone else. What works for one wont always work for another. After being here for so long, I have seen so many people come here that were certain they were sick but found out it was something else. I hope you are one of those luck people who do not have cancer. IF you do, then you are in the right place for lots of advice and support. Now, go out and do something fun this weekend
Last edited by ChristineB; 09-10-2011 03:56 AM.
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: Apr 2009 Posts: 329 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2009 Posts: 329 | Not sure if this has anything to do with this post....On Sept. 22nd I'm having a CT Scan without contrast for my neck and the same day a CT Scan with contrast for my Thorax. Reading my script it does say Iodine. After reading the post here is the CT Scan with contrast good or bad? I'm confused reading the post here.
Thank you, 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: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Hi Connie, apologies if my post has caused confusion. Contrast agents enhance a number of CT procedures by providing detailed views of blood vessels and tumors. Doctors and Radiologist are best placed to decide when to use contrast.
It is just that some diagnostic procedures like Radioactive Iodine Uptake requires body to have normal levels of iodine to work correctly. Iodine based contrast agent increase the levels. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: Jun 2011 Posts: 188 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2011 Posts: 188 | re prolonged waiting, i have my Dad's CCC senior leadership telephone numbers saved in my favorites on my phone and email. i have called 2x: once when the system was delaying the start date of my dad's treatment due to "process" and for another issue that needed immediate attn. i'm not advocated calling up the command chain when just anything bothers you, but can say if done respectfully and with determination, you should get results...we did!
Caco CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | Joined: May 2010 Posts: 224 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2010 Posts: 224 | Your laryngoscopy, they may sedate or put you to sleep as well. When they did one for me, they put me to sleep and took 5 biopsies. I hope you get the info asap and don't have to wait too much longer. If they got biopsies, they should have results before the 2 weeks are up. As for the thyroid, sometimes if they are cancerous/infected/hypo or hyper, they act funny with the dyes, so that's understandable why they want to wait to see. I hope whatever this is, they get you answers asap!
25/female at diagnosis Dx;stage 3 SCC tongue 03/25/2010 Surgery 04/13/2010 Trach,ng tube, peg feeding tube Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue. 30 rounds IMRT ended July 15,2010 | | |
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