| | Joined: Aug 2011 Posts: 15 Member | OP  Member
Joined: Aug 2011 Posts: 15 | Had my tongue biopsy today. I have a follow up with the MO (chief head and neck surgeon at the CCC) on March 13 to find out the results. They did not do a frozen sample for quick diagnosis, they want to send out the samples for full review. The MO is notoriously conservative and can't say something optimistic without adding a "but" to it, and that is fine because that is the reality of cancer. He said that all he saw was evidence of scar tissue (fibrosis) and nothing else that alarmed him. "But" only the test results will tell for sure.
I have been feeling much better and I have a peace of mind about this. January was not a good month for my recovery. I had 10-day stretch where I could not hold down food well, needed IVs twice, and lost another 10 pounds. Most of this was due to a reflux problem that was aggravated by the combination of changed diet during and after Tx and the effect of pain meds on the digestive system. But February was much better. I weaned off of all pain meds, started eating a more normal diet, virtually lost all pain associated with swallowing, and felt gradual healing at the BOT tumor site. I even gained a few pounds back. All of this led me to believe that the cancer was gone and not recurring. "But" you never know.
The next phase is the lymph nodes. I had one node involved at Dx and it still shows up on the PET and CT. It did not light up on the PET as showing cancer and is more consistent with necrotic tissue. The conservative MO wants to do a selective dissection up to levels 1 to 4. Another approach is to monitor it more and do just a removal of the one node with biopsy as a first step. I'll be back to get people's thoughts on those options after the 13th.
Dan
Dan (57)
SCC Stage III tonsil, BOT and 3 nodes, T1N2bM0. Non-smoker, and social drinker. HPV 16 confirmed. Tx started 8/22/11 and ended 10/7/11 - Cisplatin x 3 with concurrent IMRT x 35. No PEG. PET and CT inconclusive Jan. 2012; BOT and tonsil biopsy 3/1/12, all clear.
| | | | | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | Dan,
Are you on anything for Acid Reflux? My Surgeon put me on Nexium for Acid Reflux. Are you being treated at Roswell Cancer Center?
Hope everything goes well on the 13th.
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: 15 Member | | OP Member
Joined: Aug 2011 Posts: 15 | Hi Connie,
I noticed the Lockport connection. Yes, I am at Roswell. I am on Protonix and Sucralfate. I had a constriction of the esophagus and was scheduled for an endoscopy and dilation the week in January that I had the vomiting issue. It got postponed a week and when they did the scope they saw evidence of some ulceration near the stomach.
I am 6' 1" and never had a serious weight problem but over the years my weight went up to around 210. I became borderline high blood pressure and had reflux issues, particularly after meals at nice restaurants. In 2010 I went on my own diet and lost over 20 pounds, and along the way dropped the reflux and BP problems too.
It was over a year later that I got the cancer diagnosis. I was 187 on August 3, 2011 the day of my first biopsy. I am 157 today. It think my ideal weight if I can get back there is 180. I need to get back into my old clothes!
Dan
Dan (57)
SCC Stage III tonsil, BOT and 3 nodes, T1N2bM0. Non-smoker, and social drinker. HPV 16 confirmed. Tx started 8/22/11 and ended 10/7/11 - Cisplatin x 3 with concurrent IMRT x 35. No PEG. PET and CT inconclusive Jan. 2012; BOT and tonsil biopsy 3/1/12, all clear.
| | | | | Joined: Aug 2011 Posts: 15 Member | | OP Member
Joined: Aug 2011 Posts: 15 | Got the biopsy results yesterday for the tongue and mouth area - no cancer! We are very relieved.
My doctor then turned to the lymph nodes and is recommending selective dissection of levels 1-4 and the retropharyngeal node. I will start a new post in the proper forum on that topic because I want to learn more from those who have gone through it.
Dan
Dan (57)
SCC Stage III tonsil, BOT and 3 nodes, T1N2bM0. Non-smoker, and social drinker. HPV 16 confirmed. Tx started 8/22/11 and ended 10/7/11 - Cisplatin x 3 with concurrent IMRT x 35. No PEG. PET and CT inconclusive Jan. 2012; BOT and tonsil biopsy 3/1/12, all clear.
| | | | | 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 | Congrats Danny!!!! Go celebrate!!!!
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: 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 | Awesome! I responded to your other post!
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Dan,
How hard was it to do the biopsy? The ENT we saw today said it would be a nightmare for Kevin because of the spot being in the same place as before. He wants to do an MRI before a biopsy, but our mo has a differing opinion and says we should have the biopsy no matter what. So confusing. We were going to just say do the biopsy but when I asked if we could do one no matter what, he actually told me he wouldn't recommend it for previous stated reason...radiation scarring. DId they make a mess of your tongue?
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 |
Kathy, Breathe. I am right here with you.
You dont know that this a cancer yet. You must have a biopsy done to tell you that, or not.
Kris's reocurrence was in exactly the same spot as his original tumour on the BOT. It was biopsied again with no problems, under a general anaesthetic.
Yes the MRI will help elucidate whats going on, but only a biopsy can confirm the presence of cancerous cells.
Remember too , that are many false positives following a PET.
My positive thoughts to you both,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | hope. positivity. Hope for the best and hang on my friend! We are here for you and Kevin no matter what!
Dr's can be confusing when they have differing opinions and it's frustrating, especially when both have great points. I'm with the Dr that is wanting the MRI, myself, he just makes more sense to me for what it's worth.
Breath, believe and hang in there you two!
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | 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 | I agree.. A biopsy is necessary to know for sure. Why wait go through an MRI only to have to have it biopsied regardless? That's the only way for a firm dx... Would you let them treat him without a biopsy? Unless of course you were almost certain it was a recurrence? Would they treat him without a biopsy? And since MRI's ct's and PETs all respond to similar things, infection, healing, inflammation what does your ENT hope to gain by making you wait? Plus - how comfortable would you be waiting? To see if it grows or spreads? Good luck... and hugs and do breath. It could just be an area of inflammation.
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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