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#146218 - 02/20/12 08:18 PM Symptoms of recurrence
DannyJ Offline
Member

Registered: 08/03/11
Posts: 15
Loc: Buffalo, New York
_________________________
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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#146230 - 02/21/12 01:31 AM Re: Symptoms of recurrence [Re: DannyJ]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8176
Loc: PA
Ive had 2 recurrences. I was diagnosed June 2007, then again April 2008, and the third time June 2009. The first recurrence I had an awful feeling. I just knew what looked like a cancer sore almost exactly where my original tumor was that it would turn out to be cancerous. It was a hunch. I did not feel sick at all. The second recurrence I had never felt better. I went on a 25 mile bike ride with my son and then was told I had Stage IV OC. I was told to get my affairs in order.

A recurrence is just like any other time a person gets cancer. They same symptoms would be for the first diagnosis or a recurrence. You have the HPV+ on your side. HPV+ patients usually respond better the radiation and have better odds against it coming back. With it being so quick, it seems to me (of course Im not a doctor) like the radiation did not completely kill the cancer. Im sure you are worried and when facing a possible recurrence the mind will automatically go to "what if". Do your very best to stay busy to keep your mind off the possibility of being sick again.

When I first was told I may be having another recurrence in 2009, I decided right then and there I was not about to waste any time worrying. I pushed myself to stay busy and to go out and do all kinds of activities with my children. I realized how much time was wasted by worrying what the test results would be. Worrying will never change a test result so I went out and enjoyed myself. Its not easy to make yourself so busy you cant worry but I got pretty good at it.

If and that is IF this would be a recurrence for you then please dont panic. You are already ahead of the game by knowing the medical jargon. When will you get the results? If it is a recurrence please get a second opinion at another cancer center.

Best wishes!


Edited by ChristineB (02/21/12 01:33 AM)
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#146236 - 02/21/12 02:19 AM Re: Symptoms of recurrence [Re: ChristineB]
DannyJ Offline
Member

Registered: 08/03/11
Posts: 15
Loc: Buffalo, New York
Thanks Christine,

It makes sense that a recurrence a few years out would come out of the blue, but I am just thinking I would know it or feel it somehow if the original cancer was still there. There definitely is something there - whether it is necrotic tissue or live "neoplasm" will only be determined by the biopsy. The fact that the area has felt better the last few months instead of worse is comforting. You are right that the main thing is that we are on top of it and that there is a plan B if it is positive. I have already had a second opinion from one of the leading head & neck surgeons in town (formerly head of the CCC where I am being treated) and we will consult both every step of the way.

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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#146257 - 02/21/12 05:16 PM Re: Symptoms of recurrence [Re: DannyJ]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4762
Loc: Toronto canada
Hi there... Christine has been there so she's best able to tell you. From what you said though your PET, seems to have decreased in uptake since the month three scan. You are six months out or almost but it could still be just an area that is slow to heal. Hopefully it's nothing. But if it is you are being diligent -that's all you can do. Good luck, and hoping greatly that it's nothing!
_________________________
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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#146269 - 02/21/12 07:26 PM Re: Symptoms of recurrence [Re: Cheryld]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
As someone who considers myself a realist, sometimes brutally so, I've had times where I knew in my heart of hearts I had a recurrence, I felt that I "literally" could feel the cancer growing again after a hot PET scan. The PET turned out to be a false positive, result of the area still healing and inflammation.

This last fall, 3.5 years out of treatment I had two lymph nodes that swelled dramatically, again I "knew" it'd come back and I had a fight ahead of me. My ENT told me to wait a two weeks before he would do an FNA just to see if they went down, he was also concerned that the FNA would just be inflammation and comeback inconclusive. Two weeks later my nodes had reduced however still swollen, not cancerous.

Our emotions will lie to us, our minds play tricks, so I'll leave the diagnosis in the hands of a biopsy and pathology report every time.


Keep your chin up Brotha!

Eric
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#146271 - 02/21/12 08:01 PM Re: Symptoms of recurrence [Re: DannyJ]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Dan

Oh no, right before your daughter's rescheduled wedding!
I'm not going to tell you not to worry because I'd be a hypocrite since I worried about every Petscan & MRI, and still do. As far as any foreshadowing of the recurrence, in my case within a year of finishing radiation & chemo, my wife noticed that I was having more and more difficulty eating certain foods plus starting to drool a little bit. My ENT could feel a lump with her finger so clinical exams do work.
The odds are certainly with you that this is a false alarm since Petscans after base of tongue cancer have an even higher rate of false positives than their 47% error rate for all oral cancer. At 90 days, SUV uptake is high for recovering tissues with no cancer. Keep us posted and we will keep our fingers crossed for you.
Charm

_________________________
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13

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#146306 - 02/22/12 07:03 PM Re: Symptoms of recurrence [Re: Charm2017]
HankXavier Offline
Senior Member (100+ posts)

Registered: 07/31/11
Posts: 130
Loc: Ohio
Eric I just wanted to commend you on the above post. Those are the kinds of words that makes this place so valuable for getting people through. Thank you brother.
_________________________
Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]



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#146307 - 02/22/12 07:04 PM Re: Symptoms of recurrence [Re: Charm2017]
DannyJ Offline
Member

Registered: 08/03/11
Posts: 15
Loc: Buffalo, New York
Thanks for remembering my background, Charm. When I first posted last August I was starting Tx on 8/22 and I had two weddings scheduled. We went ahead with my son's on Sept. 10 and that was fine because I was only 3 weeks into radiation and just before my second chemo. But my daughter's was scheduled for Oct. 15 in Minnesota and that was going to be dicey. My wonderful daughter is a former Captain in the USMC (as is my future son-in-law) and always knows the right thing to do. As difficult as it was for them to change the date, they moved it all to March 24 when I definitely (hah!) would be back in good shape.

Well, I actually am in good shape and the biopsy on the 1st will not interfere at all. I will be a little thinner (25 pounds) in these photos as compared to my son's but I will be able to participate fully. I'll be able to taste the food better than I could back in September! We will know the biopsy results by then. If it is negative we will have one more thing to celebrate, and if it is positive we will push that out of our minds for the weekend and attend to it when we return.

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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#146312 - 02/23/12 12:31 AM Re: Symptoms of recurrence [Re: DannyJ]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Hank,

you are most welcome my friend. One thing you'll find on these forums is a whole lot of heart...it's who we are.


Eric
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#146318 - 02/23/12 04:18 AM Re: Symptoms of recurrence [Re: EricS]
MikeM Offline
Contributing Member (25+ posts)

Registered: 01/21/12
Posts: 39
Loc: California
Some additional info for those who had surgery to remove tumor and nodes. My surgeon mentioned any reoccurrence in the throat would be on the surface, and in left tonsil area, and anything in the left neck would start as a lump in the general area of original problem. Obviously by problems were on left side. He was pretty confident those are the watch areas, and the first 12 months is the critical period. After the 12 months likelihood is much, much lower. not sure if RT is similar.
Dan, hope we never become experts on this. And I doubt there are any intuitive early warning signs. Would be out of character for this terribly disease.
Mike
_________________________
Nov2011Tonsil Cancer Stage3 T1N1 HPV+, Non-smoker, slight drinker
Dec2011 Radical Tonsilectomy (TORS),
Jan2012 Neck Disection areas 2,3,4
Feb2012 Opinions from 5 RO's decision for No Rads/No Chemo
Jan2013 all clear at 1 year , continue regular check-ups
Jan2014 all clear at 2 years, only patient smiling at ENT office

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