| | Joined: Nov 2010 Posts: 49 "OCF Down Under" Contributing Member (25+ posts) | OP  "OCF Down Under" Contributing Member (25+ posts)
Joined: Nov 2010 Posts: 49 | Hi there, I'm new to this forum. I'm 33 years old from Melbourne Australia. A rountine dental examinaiton 4 months ago found a white painless lesion on the base of my tongue. A biopspy showed it to be moderate cell dysplasia and surgical removal followed. SO I had a small slice of tongue removed in day surgery. Unfortunatley the pathology results of the bit of tongue that they cut out came back as having very small cancer 'foci' (squamous cell carcinoma). So then I was sent for a million different tests. MRI scan showed 2 enlarged lymph nodes (but can't be felt from manual examination of neck) which the drs have said show signs of 'necrosis' and are now recommending I have my lymph nodes removed and more of my tongue removed. I feel that the lymph nodes are a red herring- the cancer in my mouth was really early stages (everyone has said how lucky it was to get it so early) so surely it would not have gone to the lymph nodes yet? fine needle aspiration of the lymph nodes was negative. I don't want to have unnecesary surgery. ANy adive? experiences of anything similar? thanks in advance 
Monica,33 Mum of 3. Former smoker
SCC right lateral tongue. Intially thought to be cell dysplasia and dx as SCC after surgical excision.
Nov 2010- partial glossectomy (1cm in width), partial neck dissection. Margins clear, nothing found in nodes- YAY! Benign tumor on saliva gland.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Where was the biopsy on the tongue? Front, side, base of tongue?
Were/are you a tobacco user?
Who is making these treatment suggestions?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2010 Posts: 179 | Hi Monica,
I'm a young mum from Perth that was diagnosed with SCC in march this year. As you can see from my signature that I've had a few surgeries, radiation as well as chemo. It is a scary time, especially because we have such young kids but this us also the reason why we have to fight hard and kick this disease in the ass!! You have definitely come to the right place for advice, the people on here are very knowledgeable and warm. I have to agree with David about getting a second opinion on the recomended neck dissection.
Minh
35 Yrs old
03/10 SCC T1-T2
Partial Glossectemy end March - margins not clear enough.
While waiting for resection - cancer returned,2 new cancerous lumps
Re-section End May & flap from cheek attatched. Margins clear.
Mid June - 4 teeth out
Mid July -32 Rads and 3 Cisplatin
6th Sept 10 Finished Treatment!!
| | | | | Joined: Nov 2010 Posts: 49 "OCF Down Under" Contributing Member (25+ posts) | | OP "OCF Down Under" Contributing Member (25+ posts)
Joined: Nov 2010 Posts: 49 | Hi Minh and thankyou :-)
some of this stuff has been answered in my other thread. Biopsy was right underside of tongue toward the base (the extra bit they are removing is further towards the base). Decisions are being made by a team of specialists in the head and neck clinic of a major teaching hospital. I have a pre- admission meeting tomorrow morning. I've decided to ask for a PET scan before any decision is made re the lymph nodes. Does anyone have references to the accuracy of fine needle asipiration biopsy? Can I trust a negative result from this test or not?? Is PET scan more acurate?
Monica,33 Mum of 3. Former smoker
SCC right lateral tongue. Intially thought to be cell dysplasia and dx as SCC after surgical excision.
Nov 2010- partial glossectomy (1cm in width), partial neck dissection. Margins clear, nothing found in nodes- YAY! Benign tumor on saliva gland.
| | | | | 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 | A regular biopsy is the way to tell if you have cancer. If you would have a positive result from the fine needle aspiration then they would probably schedule you for a regular biopsy. PET scans have a high rate of false positives and are not the best way to tell if you have cancer.
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | I had a positive from a FNA and no followup bio was called for and I can't see why one would be needed unless the path said something was deficient with the sample.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | A negative fine needle biospy may mean they missed the area that has the cancerous cells. It is not 100% accurate. You could have them do a surgical biospy on only those two nodes to be certain. And yes Pet scans do come up with false positives.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Nov 2010 Posts: 49 "OCF Down Under" Contributing Member (25+ posts) | | OP "OCF Down Under" Contributing Member (25+ posts)
Joined: Nov 2010 Posts: 49 | I asked for them to just take out the suspicious nodes but the ENT dr said that they used to jut 'cherry pick' the nodes but now just take them all as its safer. I asked for the PET but they said this was only necessary if the we were looking for a primary tumor. They basically said that they're going in aggressive with this because of my age and the type of cancer it is. I still think the neck disection is not needed but don;t want live with the uncertainty of 'what if'. I'm booked in for surgery on Tuesday....
David I'm interested in why they didn't take yours out if you had a positive FNA?
Monica,33 Mum of 3. Former smoker
SCC right lateral tongue. Intially thought to be cell dysplasia and dx as SCC after surgical excision.
Nov 2010- partial glossectomy (1cm in width), partial neck dissection. Margins clear, nothing found in nodes- YAY! Benign tumor on saliva gland.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | My doctors, without knowing I would later test positive for HPV, told me that they recommended only concurrent chemo/radiation and that the rad should kill the cancer and therefore taking the nodes out was most likely unnecessary. They did say that IF there were signs of cancer remaining in the nodes post rad that they would then recommend removing them. That never had to happen. Now studies have confirmed that HPV+ SCC responds better to radiation and I am sure that played a role in my kill rate. We may see a time when Tx protocols are officially adjusted for HPV+ patients and we are probably seeing some docs already being influenced in their treatment recommendations but that is not easy to follow. It is clear that with HPV- patients, which you most likely are, the standard aggressive treatment protocols still apply.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | 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 | Best of luck with your surgery on Tuesday, Monica.
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 | | |
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