| | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts) Joined: Aug 2009 Posts: 207 | Here for you hon....xxxxx
Jeanna Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | | Gold Member (200+ posts) Joined: Apr 2011 Posts: 267 | The lymph node biopsy came back negative. The radiologist who did the biopsy said he could not see any enlarged nodes on the ultrasound (MRI showed enlarged nodes of 1.5 to 2cm three days prior). He had another radiologist come in and look and he didn't see any either. He ended up only sampling one node under my jaw on the right side. That is the one that came back clean. After much discussion, we decided to only have the tongue resection on Monday. We will then make the decision on END based upon the pathology report from that surgery and a PET/CT. My tumor measures 1.5 cm, but the surgeon can't tell how much of that is scar tissue from a prior surgery to remove precancerous lesions. So we will know more about actual size and depth after it has been fully excised. I also plan to get another second opinion at UCSF prior to deciding. Thanks again for all the input. I'm sure I'll have many more questions as we move through this process.
Tracy - 33 at diagnosis SCC right ventral tongue Dx 4/11. T1N2M0 1st resection 5/11. Bilateral neck dissection: 2 pos nodes 2nd resection w/graft 6/11. Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11. 3 month MRI and PET/CT all clear. 6, 9, 12 and 24 month post treatment MRIs all clear. | | | | | Joined: Dec 2010 Posts: 291 Gold Member (200+ posts) | | Gold Member (200+ posts) Joined: Dec 2010 Posts: 291 | Tracy, I say so far so good! We all have to take it one day at a time. Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA GIST tumor sarcoma, removed 9/2011, no chemo needed Clear on both counts as of Fall, 2021
| | | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | | Gold Member (200+ posts) Joined: Apr 2011 Posts: 267 | Path report from tongue resection came back today. Tumor was 1cm at it's biggest area. It was moderately differentiated and had penetrated to .45cm. It had also invaded a nerve. They got clear margins all around, but one was only .4cm. The other were 2cm, 2cm and 3cm. They also found some dysplasia at one margin. We are scheduled for a tumor board review next Thursday followed by selective neck dissection the next week unless recommendation is for radiation instead. I am very worried, but glad we are moving forward with this process.
Tracy - 33 at diagnosis SCC right ventral tongue Dx 4/11. T1N2M0 1st resection 5/11. Bilateral neck dissection: 2 pos nodes 2nd resection w/graft 6/11. Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11. 3 month MRI and PET/CT all clear. 6, 9, 12 and 24 month post treatment MRIs all clear. | | | | | Joined: Dec 2010 Posts: 291 Gold Member (200+ posts) | | Gold Member (200+ posts) Joined: Dec 2010 Posts: 291 | Tracy, Mine was moderately differentiated also. Mine was really more like an ulcer, and it was slightly under a cm at its largest, but only 1 mm deep. My report said it had invaded muscle "focally" which means in that location, which would seem to indicate somewhat more aggressive.
Tongue tumors like ours are tricky so that is why they tend to use radiation to clean up after surgery, even if they think they got it all. All your margins are good except for the .4 cm, as you know. The more recent research I have seen (can give links if interested) indicates that surgery followed by radiation for oral tongue cancer can give very good results, with high survival rates. It is not so bleak if the lesion is smaller.
Get a second opinion if at all inclined. Sounds like you are getting good care though. I would ask about that .4 cm margin--depth?? I think mine was not a lot wider/deeper than that however.
Best, Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA GIST tumor sarcoma, removed 9/2011, no chemo needed Clear on both counts as of Fall, 2021
| | | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | | Gold Member (200+ posts) Joined: Apr 2011 Posts: 267 | Hi Anne,
I like my surgeon very much, but will probably still get a second opinion anyway just to feel more sure about things. He doesn't think I need radiation but he does plan to send me to a radiation oncologist for a consult. I am afraid of the long term effects, but think it might be a good idea to be safe. I guess I'll wait to see what the radiation oncologist says about that. I would be very interested to see the links you mentioned.
Thank you very much, Tracy
Tracy - 33 at diagnosis SCC right ventral tongue Dx 4/11. T1N2M0 1st resection 5/11. Bilateral neck dissection: 2 pos nodes 2nd resection w/graft 6/11. Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11. 3 month MRI and PET/CT all clear. 6, 9, 12 and 24 month post treatment MRIs all clear. | | | | | Joined: Dec 2010 Posts: 291 Gold Member (200+ posts) | | Gold Member (200+ posts) Joined: Dec 2010 Posts: 291 | Tracy, I will dig them out, and pm you. My ENT oncologist wanted me to have radiation when the rest of head & neck did not think I needed it. That was because his hunch was that it was more aggressive. Then I ended up with a lymph node that had microscopic extracapsular extension. I am not the only one with a small lesion and ECE on this forum. Anyway, my ENT was proven correct. I too was worried about side effects, long term effects. Still am, but I take it more one day at a time now. Second opinions are a good idea. Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA GIST tumor sarcoma, removed 9/2011, no chemo needed Clear on both counts as of Fall, 2021
| | | | | Joined: Mar 2011 Posts: 131 Likes: 5 Senior Member (100+ posts) | | Senior Member (100+ posts) Joined: Mar 2011 Posts: 131 Likes: 5 | MSMAC, For what it's worth, I went to see a local MO yesterday for the first time (as my primary team was at Mass General) and he said "we are seing less and less neck dissections these days". He told me this because I had just explained how my surgeon thought he was going in for a Brachial Clefy Cyst only to find a large node with SSC in it. Our next step was to identify the primary tumor with a PET and the whole dissection topic was really just skipped over. Now I don't know if this happened because I had my surgery at Tufts and my TX at Mass General and there was some communication issues there or if everyone just really agreed that with the effectiveness of radiation these days that ND's are no longer the best route. I really don't know. I never had one. One thing my RO told me was that from your very first rad TX each session kills 99.99% of cancer cells. That's EVERY session. This is a top guy at MGH. 35 years in head and neck. Recommended to me by Dr. Bob Arnot. Good luck to you. Try not to het ahead of yourself. You're in the right place. Stay close. MaineWill
Lump in left side neck discovered Sept 2009 Misdiagnosed & FNA inconclusive Large lymph node removed Nov. 2010 SCC and HPV16 pos PET pointed tonsilectomy Feb. 2011 1ml tumor left side tonsil Rads scheduled March 14th 2011. 2X36 GY's (72) CarboTaxol once a week X 4 or 5 starting 4/5/11 No PEG
| | | | | Joined: Dec 2010 Posts: 291 Gold Member (200+ posts) | | Gold Member (200+ posts) Joined: Dec 2010 Posts: 291 | Neck dissection, surgery, definitive radiation: all depends on what type of head and neck cancer the patient has, stage, nodal involvement, histology, etc. HPV +: definitive radiation. Oral cavity: if surgery can get it all that is best, but depending on size and other factors, radiation is often recommended anyway. Now I am talking like I have had years of experience, and I have not! I feel years older, wiser since my initial treatment last fall, though. My follow-up radiation treatment was not as heavy a dose as if radiation had been the only treatment, so there is the trade-off, although I had to have chemo as well, all for such a small lesion and one lymph node. Still well worth it as I believe it was the best treatment for what I had. Anne
SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA GIST tumor sarcoma, removed 9/2011, no chemo needed Clear on both counts as of Fall, 2021
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | After my biopsy came back positive, the 1st Oncologist told me that he would do Rads and Chemo and this might take care of the Cancer. Then I was sent to a University Hospital because my tongue was so infected it filled my mouth. The Oncologist there scared the crap out of me with what he wanted to do. After he drained the mess out of my tongue, which sprayed him in the face , I went home and was really afraid of his tretment. Then I went to OSU CCC and saw a 3rd Oncologist, for his idea on what he would do. Needless to say I went to him for the surgery to my tongue. When I woke from the surgery, he had already done the neck dissection but did find Cancer in the nodes. I was glad he did the dissection. In my case, I was glad he did it.
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
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