Previous Thread
Next Thread
Print Thread
#193467 12-02-2016 05:18 AM
Joined: Jun 2016
Posts: 10
Ward B Offline OP
Member
OP Offline
Member

Joined: Jun 2016
Posts: 10
I have not really posted much since finding out about my issue back in June. Once finding out I was HPV positive and the high curative rate of this type of oral cancer, I almost felt guilty. The treatment was hell as is the recovery, but compared to what some of the members of the board have endured, I felt fortunate. I went to Moffit. My Dr's were confident that they had this. I endured the 35 rads and 6 chemo treatments. It was brutal.
Originally diagnosed as stage 4a, because of an enlarged lymph node on the left side of my neck, the Dr's did not seem as concerned about the tumor as it was rather small. In fact, they considered not using chemo at all, but lymph node had them concerned. So we did the cisplatin
Yesterday, I went for my 3 month pet scan. Dr. and his assistant were both very pleased with the outcome. The lymph node issue had been resolved, and the tumor activity was greatly reduced and I was told it was not uncommon for this to occur. They told me this was very positive but they could not tell me I was cancer free. They scheduled another scan for late February to assess. Obviously I was disappointed about not receiving the all clear. My question is has anyone else being HPV positive had this happen after their first scan? How did it turn out?
I am trying to remain positive, but.... its hard, scary...


SCC left base of tongue... diagnosed as stage 4a due to an enlarged lymph node on left side of neck.
Went to Moffit
35 rads. 6 rounds of cisplatin, food pick - now removed.

Never a real smoker/tobacco user or heavy drinker.
Ward B #193469 12-02-2016 10:11 AM
Joined: Jun 2007
Posts: 10,507
Likes: 3
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 3
Ward, please feel free to post! We are here to help each other. What you go thru and write about could be exactly what another patient is going thru and can help hundreds of others.

I cant remember seeing any patient who has been given a "cancer free" diagnosis on their first check up after rads/chemo. I would highly doubt any physician would say that this early after finishing rads. The fear of a recurrence is something we all have. In time, this fear does slightly lessen but it still hangs around in the back of our minds for a long, long time.

Hang in there. We all know where you are coming from, we've been there too.


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
Ward B #193470 12-02-2016 11:03 AM
Joined: Aug 2012
Posts: 214
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Aug 2012
Posts: 214
Ward,

3 month PETs are notorious for false positives. The BOT area was highly radiated. This will cause your body to repair the tissue which will cause the uptake to be elevated.

3 months was chosen because it a balance between when enough healing has occurred and a chance to catch other problems early. Pushing it out 6 months make false positives much lower, but I am not sure if "not knowing for 6 months" would make the patient happier. I would be happy with "very positive".


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
Joined: Jun 2016
Posts: 10
Ward B Offline OP
Member
OP Offline
Member

Joined: Jun 2016
Posts: 10
Thanks Christine, I will share.


SCC left base of tongue... diagnosed as stage 4a due to an enlarged lymph node on left side of neck.
Went to Moffit
35 rads. 6 rounds of cisplatin, food pick - now removed.

Never a real smoker/tobacco user or heavy drinker.
Joined: Jun 2016
Posts: 10
Ward B Offline OP
Member
OP Offline
Member

Joined: Jun 2016
Posts: 10
Thank you for the insight hockey dad.


SCC left base of tongue... diagnosed as stage 4a due to an enlarged lymph node on left side of neck.
Went to Moffit
35 rads. 6 rounds of cisplatin, food pick - now removed.

Never a real smoker/tobacco user or heavy drinker.
Ward B #193485 12-03-2016 05:22 AM
Joined: Jul 2012
Posts: 3,267
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Hi Ward,

Well, you're at a top CCC that is part of the NCCN network, and I'm sure you're in good hands!

I often heard the terms stable, all clear, no signs of cancer, cancer free and such, but not "cured" which one of my ENT says will be at 5 years. As long as there is no suspicion of cancer, I don't care what words are used.

I agree what was already said. PET scan are highly sensitive, and from one report I read are in the mid 90% accuracy range at 3 months, even higher at 4 months, so time does matter. Just as important, is proper patient preparation such as diet, no chewing gum, coughing, swallowing, etc. and timing of the PET after the FDG, which can effect uptake. Then comes the experience of radiologist who interprets the scan. Besides the scan report, I obtained a cd copy to bring to my ENT, radiation and Medical Oncologist. I can't say how many times my doctors were happy having done so as they may not be posted fast enough as were my visits. Oncologists never seemed to review the scans other than the report, to my knowledge.

I've had enlarged nodes after treatment. Once my radiation oncologists waited 5 months to do a scan, in belief it was fluid, necrotic. which then came back negative, Other times it was suspected to be inflammation, but not suspect.

NCCN guidelines recommend follow-up scan 3-6 months post treatment, but it's only for certain disease, oropharyngeal is included, but for T3-T4 disease only. Anyway, all my doctors followed the 3 month post treatment scan, then 6 month repeat scan, sometimes alternating between MRI since I can no longer have CT contrast.

There are several schools of thought; watch and wait, a planned neck dissection or one that is responsive after treatment response. I think if the tumor hasn't shrunk more than a certain percentage, has a certain SUV, where it's located, then there might be more concern, and have an FNAB, a direct biopsy and or another type scan done. Even then it's difficult to say after treatment, and had enlarged lymph nodes that were positive by FNAB, which showed mixed pathology, but proved negative by surgical biopsy, and others that weren't, so it worked out.

It depends on the doctor too. Not sure who you saw, Medical or Radiation Oncologist, but had one oncologist that sent me for an MRI after a suspect PET, which came back negative. There should also be planned follow-up visits with your medical and radiation oncologist, ENT every 1-3 months the first year, increasing in time as years go by where they do a visual and palpable exam and some flex scope, so you will be monitored.

You can also do self monitoring by visual and palpable exam. I found all my cancers in the lymph nodes, cervical neck, except for one, which were then followed up by doctor visit, biopsy, and scan.

I hope this helps and good luck.



10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Ward B #193551 12-09-2016 10:34 AM
Joined: Jan 2013
Posts: 1,291
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
Hi Ward,

try not to worry about the three month check. as said earlier it is often not very accurate. Even at nearly 3.5 years out my ENT is not totally ready to say cured. He is willing, for my diagnosis and my case, to basically say once I cross 3.5 post that he unofficially called me "cured".


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
donfoo #193584 12-14-2016 11:40 AM
Joined: Jun 2016
Posts: 10
Ward B Offline OP
Member
OP Offline
Member

Joined: Jun 2016
Posts: 10
Thanks Don


SCC left base of tongue... diagnosed as stage 4a due to an enlarged lymph node on left side of neck.
Went to Moffit
35 rads. 6 rounds of cisplatin, food pick - now removed.

Never a real smoker/tobacco user or heavy drinker.

Moderated by  Eva Grayzel 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,884
Newest Members
RCnola, mpaw, Spencer, Kevin5, CancerSurvivorSpou
13,041 Registered Users
Forum Statistics
Forums23
Topics18,122
Posts196,667
Members13,041
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2022 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5