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#199993 03-28-2020 08:08 AM
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I am about two weeks post-op for removal of a SCC tumor from my right tonsil. It was stage 2, borderline stage 3 and was removed with clear, but thin margins. A neck dissection was also performed with just two lymph nodes showing microscopic traces of cancer. Recovery has been OK. I opted for surgery over radiation due to the possible long term effects of radiation and on the ENT's confidence that he could get all of the tumor, negating the need for further treatment.
As mentioned, the tumor was a little bigger than expected, but removed with clear, but small margins. The lymph nodes (2) showed microscopic traces of cancer. Due to the unexpected size of the tumor, the ENT is now recommending radiation, which is what I was hoping to avoid. He mentioned 5 days / week for 6 weeks. Keep in mind that quality of life takes precedence over longevity for me. Here are my questions/concerns:

1. If the tumor is gone, and the margins were good, just what the heck are they shooting radiation at?
2. I read that 6 weeks of radiation is typical to shrink tumors (no surgery)....if my tumor is removed and margins were good, why 6 weeks?
3. Is there some kind of test to determine if cancer still remains in some tissues?
4. If I elect to forego radiation, what are the chances cancer will return?
5. If it does return, would surgery be an option again?
6. If I can get a reduced radiation schedule are the side effects as bad as a full radiation treatment?
7. Any scenarios I may have missed?

Thanks in advance!

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On the main OCF website, you will find page after page of important info that consists of anything and everything to do with OC. Ive added the link below to make it easier to get to. Its also found on any page by clicking on OCF Website at the bottom right of any page. One of the best things a patient can do is to read and learn about their illness. Just so its coming from a reputable resource (which of course OCF is!!!). An educated patient makes for the best advocate for themselves.


Main OCF Site, Understanding Section


Christine
SCC 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 smile
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747, hope you are doing OK.
Christine's advice is golden.
Best to educate yourself as much as possible, and take advice from Oncologists who have experience with SCC.
So I wouldn't give you exact treatment yes or no, but pass along some things that I learned along the way.
The treatment is very much based on some sort of decision guide the Oncologists have, so I don't think many would deviate from that.
As far as "finding" all of the cancer, I don't think that is really 100% possible, because of the way it travels though the lymphatic system. Just my opinion, as I had two surgeries to find my primary cancer, after my cancerous lymph node was removed. They never found any other cancer, so I had the radiation and chemo protocol.
If you have a HPV P16 SCC, the radiation /chemo protocol has a very high historical success rate.
I have not read about any reduced radiation and chemo protocol. I think they pretty much go with almost the same protocol, give or take a few treatment days. Usually it's around 33 days.
With 3 large doses of chemo, or 7 smaller doses, to boost the effectiveness of the radiation.
I understand your thoughts to avoid radiation, there is no way to sugar coat it.
I wanted to skip the last few radiation treatments, until my Oncologist told me how much recurrence stats change with each missed treatment.
I figured, I went this far, including all the tests and surgeries, so why not just force myself through it.
If you decide to do both Chemo and Radiation, it's best to go to a facility that does both. It makes things so much easier. One day a week, I had my radiation after having the chemo that day.
Best wishes.
Mike


Enlarged left cervical lymph node in neck on 1/9/18. Male, age 60. Had retired from working as a computer technician and a project manager for almost 38 years, on 7/1/17.
Node was removed 1/16/18 and found to have SCC P16.
Chest xray clean.
Since then, PET/CT, slight activity left parotid, possible malignancy left lingual tonsil. MRI clean.
3 endoscopies, nothing seen.
2/26/18 Larryngoscopy,primary not found.
TORS 3/23/18 lingual tonsil biopsy.,biopsy negative.
Chemo/rads started 4/18/18.
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I asked my doc the same question after one of my nodes tested positive. Why do I need radiation? Didn’t you get all the lymph nodes? The answer I was given is no. First of all, some lymph nodes are too small to be seen by the doctor in OR. Second, they can only remove the nodes that are visible and can be reached. There are some lymph nodes that are deeper in the neck. Also different people have different number of lymph nodes and in different areas. It’s not as precise a procedure as I had imagined. Research shows that if even one node is positive the chance of recurrence increases. Just my opinion however


Stage 3 cancer of right side of tongue
Tumor: t2.
Lymph nose spread
Partial glossectomy and neck dissection (2/12/20)
Never smoker
Completed six weeks of radiation on 5/6/20
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Also unfortunately medical scans like MRIs can’t detect microscopic cancer cells.


Stage 3 cancer of right side of tongue
Tumor: t2.
Lymph nose spread
Partial glossectomy and neck dissection (2/12/20)
Never smoker
Completed six weeks of radiation on 5/6/20
Joined: Mar 2020
Posts: 3
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Thanks for all the replies and encouragement. I met with the radiation oncologist today and he explained that even though the tumor was removed with good margins and only two lymph nodes had microscopic traces of cancer, the cancer had to move from the oral cavity to the neck. It is unknown if it moved via the bloodstream or through the lymphatic ducts or along a nerve, hence the recommendation for radiation. He was familiar with the reduced radiation studies from Sloan-Kettering, but he said it hasn't become a recommended protocol yet. I also met with a medical oncologist just to be sure there would not be a recommendation for chemo and she concurred. I have a CT scan of the chest scheduled for next week just to be sure the cancer hasn't spread to the chest area. The consensus is that no radiation now may equal radiation + chemo + more toxicity later if the cancer returns. I still have a few weeks to make a decision.

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I understand your concern. I'm also at the same crossroad. This is my second partial glossectomy for SCC - right side/left side back in 2012. I am 56 years old and have had a bone marrow transplant back in '95. I'm very familiar with similar side effects from the transplant. Quality of life is a priority since I am starting at a bit of a deficit with chronic but extremely manageable side effects from the transplant. My oncologist say that radiation leads to a cure but for me more years, grueling pain and being worse off than I am now isn't appealing. I hope you are younger and strong. Good and kind people ready to help.

Tough questions. No one right answer


Allogenic Bone marrow transplant -'95 (Acute Mylogenous Leukemia), 2012 - SCC Left lateral tongue - surgery only, 2020 SSC Right lateral Tongue Stage II PNI+ partial glossectomy Surgery (Radiation Strongly Recommended)

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