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PET scan today - so so results.....

yensid683
Posts: 225
Joined: Apr 2012

I had my three month follow up PET today (SCC BOT, HPV+, Stage IVa) treated with one course of induction chemo and then with 8 weeks of erbitux and 33 rads.

I expected very good news as the ENT that originally diagnosed me had scoped my throat twice and saw no visual evidence of the original tumor, and neither the medical or radiation oncologist could palpate any abnormalities in the left cervical lymph nodes.

I heard from my RO this afternoon and overall he said the news was good, but he did say that a small spot lit up where one of the lymph nodes are. He is conferring with the medical oncologist and my ENT on what to do next, and I find out at my next appt (next week) I knew going in from the ENT that after the rads they'd do a PET and if necessary a neck dissection. I wasn't prepared to hear that this may be necessary. I'm more than a bit stressed out and wondering what the future may hold.

I've purposely stayed away from researching neck surgery but I'm thinking that radical surgery will not be indicated, anyone have experience with 'minor' neck dissection?

What can I expect? How long could the hospital stay be? How long would recovery take? I've been back to work for 4 weeks now and don't want to miss more, how long before I could return to work? (desk job)

I've followed everyone all summer long, I've had great solace in just reading about your experiences and contributing to some of the discussions. I'm hoping that this is just a 'false' reading or a benign hot spot, but my luck is not as good as that.

Peter

longtermsurvivor's picture
longtermsurvivor
Posts: 1768
Joined: Mar 2010

this is not as bad as you fear. I had a major neck dissection, not a minor one like you are discussing. 3 days in the hospitl and two weeks off work. Others will tell you of less agressive surgeries.

best to you

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

had my 2.5-month follow-up PET/CT scan last week (SCC tonsil, HPV+), treated with erbitux and rads. like you, no visual evidence of tumour, but showing a hot spot in the throat. oncologist thinks it's likely from radiation, but he's conferring with my ENT...

sorry, can't offer any advice about surgery...but I'd stay away from research too until getting explicitly bad news. why get ahead of the doctors? until I hear otherwise, it's just radiation.

Skiffin16's picture
Skiffin16
Posts: 8058
Joined: Sep 2009

Peter, like both Pat and BSB say, it more than likely isn't as bad as you think...

Actually hot spots on a three month PET aren't that unusual, especially with the trauma from rads.

Residual damage is very common, so they might wait awhile to see if it resides, or if they are convinced (I'd presume they'd take a biopsy first), you might have to have the dissection.

Here's for a good biopsy and waiting if necessary...

Best,
John

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

I'm no doctor...so my experience was:

My 3 month PET/CT showed an uptick in heat in the vocal cords....oncologist said it was probably just from rad treatment ....(I was base of tongue stage III with 1 lymph node so they say...I often think I was just a hair bit further than III) ......

When looking at my written report it actually said "possible residual disease" ...which of course makes you stress (it did me) but only later did the nurse to my oncologist say anytime there is something like that...the written report will never be as "comforting" to read...kind of a cover your bottom statement ...

My 6month CT w/ contrast is when I got my definitive NED ...so hang in there Peter. I've often heard it said on here "don't borrow trouble" and I kind of like that statement..

Best,

Tim

CivilMatt's picture
CivilMatt
Posts: 2866
Joined: May 2012

Hi Peter,

I am also, SCC BOT, HPV+, Stage IVa, 1 lymph node left side of neck.

I chose to have surgery on BOT and have lateral Jugular Vein dissection to remove one stubborn lymph node, prior to the loading dose of Erbitux, 35 rounds of rads and 7 weekly Erbitux infusions.

At 3 months the scan results was very good (NED) with a hot spot up my b_ _ _(no worry there).

The neck dissection was tricky because the lymph node involved my Jugular Vein, but it was no match for a keen eye and a sharp scalpel. Combined with the BOT surgery I was in and out the same day. The tongue portion I never felt, the lymph node surgery made my face numb around the neck and cheek. That was December 15, 2011, today most of the feeling is back in my neck and cheek and the scar does not show.

There is a picture of the bandaged surgery on my expressions page (not much to see, just battle scars from this beast).

Best,

Matt

Ladylacy
Posts: 464
Joined: Apr 2012

My husband's PET/CT scan show several uptake spots but the oncologist and ENT/surgeon/cancer specialist were not too concerned because they said that radiation could cause the problem. The surgeon is going to take a look around because the report said that inflammation could be hiding a small tumor. We were told they put this in just to cover themselves if there is some uptake. He is also going to try to open up my husband's throat which was closed off, again, due to the second round of radiation in basically the same area.

I know it is hard to say, but try not to worry. We are sitting on pins and needles until next week when the procedure will be done but also know that whatever is there is out of our hands and all we can do is hope and pray nothing is there. But remember everyone is different and responds differently to treatment.

Best to you, Sharon

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

at three months - we did a wait and watch. My docs expected everything to calm down, and the "suspicious" area to become a non-issue. This is the case for most who light up at three months.

Turns out, I was in the minority - I had to have the dissection six months after the iffy scans. As far as pain goes, the neck dissection pain was no prob compared to the tonsillectomy/biopies I had at the start of treatment.

yensid683
Posts: 225
Joined: Apr 2012

is a great description of it.

I'm somewhat encouraged by the responses to my original post, but still am worried about the future. I think that it is worse than the first PET in April, but since you're a minority in that you had the dissection, and judging from your picture you have an appreciable scar, can you tell me what the experience and post operative recovery was like?

I'm not afraid of the surgery, but I do have concerns on regaining function, post operative pain management, lenght of time to return to normal activities and perhaps full activities.

Also, how have you been fairing since? NED?

Sam999
Posts: 305
Joined: Mar 2012

I had a neck dissection before the rads to check if any of the lymph nodes had any cancer cells. They took out 47 lymph nodes. I had about 4 inch scar with 37 stiches. It was not bad. I also had tongue surgery at the same time. I was out of hospital in 4 days and back to work in two weeks.

Yours will be simpler than mine since you dont have tongue surgery.

My only complication was nausea due to anesthesia for 24 hours. So they could not give me any food. I wad only on ivy for 48 hours and hungry like anything! What i found was people who have motion sickness (i have it) always hae such reaction to anesthesia. If i had told the docs earlier, they could have given me anti nausea meds from earlier and i could have been better.

Sam

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