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DannyJ Offline OP
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I finished my Tx in October 2011 and had the follow up PET and CT in January. Both were inconclusive and showed a possibility of residual cancer in the BOT area. They also showed unresolved lymph nodes that did not "light up" in the PET and were thought to be necrotic tissue. My MO ordered a biopsy for the BOT issue and it came back negative, thank God.

Now we are turning to the lymph nodes. The MO says the size and appearance of two nodes in the CT scan are too much to (1) assume it is necrotic tissue and (2) adopt a wait and see approach. He wants to do a selective dissection of levels 1-4 and the retropharyngeal node and I have a surgery date of April 26.

Can anyone help me understand what I am facing in terms of the length of the surgery and recovery time? I understand the surgery can take several hours, and it is normal to be in the hospital for 2 or 3 days. It is not as involved as a radical or comprehensive dissection, and it does not have the same risk for damaging muscle or nerves as the comprehensive surgery. The MO also said recovery would take a month or two. I know there can be side effects that affect shoulder movement, facial nerves, etc, as well as continuing side effects such as skin sensitivity for a long time. But assuming a reasonable result from the surgery, when might I expect to start eating normally, return to work and then resume summertime activities such as swimming, golf, etc.? Can it really be as fast as a month or two? I appreciate any information from those who have had this done.

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.
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Hi there I had 40 nodes removed during my surgery - it was much longer as they did it during the time of tumor removal - it was a piece of cake compared to my tongue surgery - I'm still numb 13 mos out from surgery but my shoulder is fine and has been for about 10 mos. physio really helped. My neck is still tight but that's from the combination of radiation. And surgery. So a few months out you should be okay as long as you get physio and do your exercises. I was eating normally after having tongue surgery and a neck dissection 10 days out. One thing to note. Operating on radiated skin is harder and slower to heal keep an eye out for infection and good luck!


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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I had 30 nodes removed, one was cancerous. The surgery took quite a while, but I also had the tumor removed from my tongue at the same time. I actually had less problems with my surgery than with the radiation and chemo. I was fortunate in that I didn't have to have a trache or a skin graft. I had the surgery on a Wednesday and went home in Saturday. I was pretty out of it the frist day, so don't remember much about that, but if I hadn't had to have the radiation and chemo I probably would have been back to work within ywo months, or less. My treatments came about a month after my surgery. I had trouble raising my arm, but went for physical therapy and it really helped. I am still not really eating normally, but that was due more to the radiation.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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Danny some lucky members can bounce back rather quickly after a few weeks while others will be months. It all depends on you and how quickly you can heal. Using high protein powder will help your body bounce back faster. Post radiated tissue will take longer to heal. Hope for you it is a relatively easy procedure with a speedy recovery! Good luck!


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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Danny, best of luck, I'm sure you'll come through it fine. Despite having to have an emergency trache and its attendant problems I found the surgery more or less a walk in the park compared to RT. Since I had the dissection first I had an advantage as to healing skin and so forth, so that's definitely something to consider. But all in all within a month or 6 weeks post-op I was feeling pretty good and ready to tackle radiation! (or anything else more or less)

Keep us posted.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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DannyJ Offline OP
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Thanks for all the comments. Good point about the post-radiation skin. I know how that works. I was just starting to eat better and feel better in my mouth when they did the biopsy on March 1, and it has been slow to recover. The doctor said the post-radiation tissue heals slower.

I will not be having any radiation after the surgery. I already did my time on that, hopefully for the last time! I know the nature of the recovery is different, but if people are saying the surgery recovery is easier than the radiation recovery, then that is good to know.

I know shoulder problems are common because in the more comprehensive dissections there is no way to avoid damage to certain muscles and nerves. My selective dissection is not supposed to have those problems but they are possible.

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.
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I had surgery first and like the posters above, was pretty well recovered at six weeks. The radiation then undid a lot of that recovery and I became very stiff and swollen again. It has been a little over six months since I finished radiation and I still have stiffness and swelling along my scar and in my shoulder. It continues to get better with time and exercise. I know I have seen people post who had radiation prior to their neck dissection. I'm not sure what the difference would be other than slower healing. I was eating pretty well within a week or so of surgery (soft foods because I had tongue surgery, too) and would have been able to go back to work at an office job around a month out if not for radiation. Overall, the surgery and recovery were easier than I expected. I'm not sure how long your surgery will be. Mine was around 6 hours but I had a bilateral neck dissection and a partial glossectomy, so yours will probably be shorter. I went home on the third day but I still had drains in my neck. They came out on day five, I think.
I hope your surgery and recovery go smoothly.


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.
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DannyJ Offline OP
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I actually have a change of plans. I am just going to have one node removed and biopsied.

I had a formal second opinion and informal third opinion (sent the PET and CT scans to an out-of-state college classmate who is a radiologist, and had him run it by his cancer specialist colleagues). My clinical exam and my PET scan are both good. They can't feel any lump or node via manual examination, and the PET did not light up at the node site. But the CT scan shows something still there, identified in the CT report as necrotic lymph node. That means we have to do something but there is nothing in any scan, either the first ones last summer or the most recent ones in January, that implicate any other nodes. The selective dissection would have been a precaution. After weighing all the factors my wife and I have decided not to do that. If the single node biopsy comes back negative we will just go into what my doctor calls "prayer and follow up mode."

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.
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"OCF Canuck"
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Good luck ! I sincerely hope everything works out! Hugs!


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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