Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#195745 - 02/19/18 02:13 PM 2nd Recurrence 4.5 yrs out  
Joined: Sep 2013
Posts: 8
dtm74 Offline
Member
dtm74  Offline
Member

Joined: Sep 2013
Posts: 8
Had my last follow up appt 4.5 years out last week. Doc didn't like the way the very corner of the flap looked. Took biopsy and came back as cancer. PET scan scheduled this week. He's thinking surgery again. Anyone ever heard of cancer developing on the flap itself? Doc says it can happen, but rare. I can't believe it as i'm HPV -, Non smoker, moderate drinker.

I didn't have radiation before as he wanted to keep that option in case we needed it down the road. He's considering it this time around. I'm a very positive person and am ready to attack this again now that i'm getting used to the fact that its really happening. Scared though. Very scared.

Last edited by dtm74; 02/19/18 02:17 PM.

-Male, age 43, no smoke or chew, mod drink, HPV -
-started with canker that wouldn't go away
-biopsies over next 8 years showed moderate dysplasia only
-8/13 biopsy showed cancer T1N0M0
-9/13 Partial Gloss w/ free flap from left wrist w/ neck dissection, trach, - no node involvement, no chemo or rad
#195747 - 02/19/18 07:37 PM Re: 2nd Recurrence 4.5 yrs out [Re: dtm74]  
Joined: Jun 2007
Posts: 10,116
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,116
PA
Im so very sorry you have to go thru this again!!! Its extremely rare but yes there have been a couple members who have had cancer come back in their flap. Wishing you all the very best with everything you are facing.

Hang in there!


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
#195749 - 02/20/18 03:48 PM Re: 2nd Recurrence 4.5 yrs out [Re: dtm74]  
Joined: Jul 2012
Posts: 3,108
PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,108
NYC
dtm74,

I’ve also heard cancer can return, and when it does it can be to the surgical site or incision. I’ve had numerous recurrences myself, in areas that were previoiusly treated, that were deemed recurrences since they occurred less than a year, and had the same pathology. At this point, they may consider this a secondary cancer, not sure though, due to the time distance from the first cancer or it can you may have a different pathology from the first cancer, which may mean nothing to us or change treatments, but it may be something you hear or see on a report, so you may want to review the pathology report from the biopsy, I always get a copy anyway, or ask the dr, the type of cancer it is like squamous cell carcinoma probably like the first, tumor grade, etc.

Good luck with the PET scan.


10/09 T1N2bM0 Tonsil
11/09 Taxotere Cisplation 5-FU 6 Months Hosp
01/11 35 IMRT 70Gy 7 Weeks
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 weeks Taxotere Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Removed IORT 10Gy PNI
12/13 25 Proton Therapy 50Gy 6 weeks Carboplatin
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fibular Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent






#195750 - 02/20/18 04:43 PM Re: 2nd Recurrence 4.5 yrs out [Re: ChristineB]  
Joined: Sep 2013
Posts: 8
dtm74 Offline
Member
dtm74  Offline
Member

Joined: Sep 2013
Posts: 8
Thank you Christine! I will


-Male, age 43, no smoke or chew, mod drink, HPV -
-started with canker that wouldn't go away
-biopsies over next 8 years showed moderate dysplasia only
-8/13 biopsy showed cancer T1N0M0
-9/13 Partial Gloss w/ free flap from left wrist w/ neck dissection, trach, - no node involvement, no chemo or rad
#195751 - 02/20/18 04:48 PM Re: 2nd Recurrence 4.5 yrs out [Re: PaulB]  
Joined: Sep 2013
Posts: 8
dtm74 Offline
Member
dtm74  Offline
Member

Joined: Sep 2013
Posts: 8
Paul,

Thank you for the well wishes and for the information. Good point to get a copy of this pathology and compare to last. I'm learning as i go so appreciate you sharing your experience with me.


-Male, age 43, no smoke or chew, mod drink, HPV -
-started with canker that wouldn't go away
-biopsies over next 8 years showed moderate dysplasia only
-8/13 biopsy showed cancer T1N0M0
-9/13 Partial Gloss w/ free flap from left wrist w/ neck dissection, trach, - no node involvement, no chemo or rad
#195752 - 02/21/18 10:40 PM Re: 2nd Recurrence 4.5 yrs out [Re: dtm74]  
Joined: Dec 2017
Posts: 14
Crapshack Offline
Member
Crapshack  Offline
Member

Joined: Dec 2017
Posts: 14
I'm so sorry to hear you're going through this again. Did you continue drinking moderately after the first surgery up until now? Asking since it can be a risk factor for HPV- cancers.

Good luck with the scan!

#195757 - 02/23/18 10:05 AM Re: 2nd Recurrence 4.5 yrs out [Re: Crapshack]  
Joined: Sep 2013
Posts: 8
dtm74 Offline
Member
dtm74  Offline
Member

Joined: Sep 2013
Posts: 8
Yes, i do still drink very moderately. I might have 2 glasses of wine / week on Fri or Sat when out to dinner. I had specific discussions with my doc re: this subject and he said that the very small amount that i may drink should not be a factor. Some of the stuff i read on this site makes me think otherwise. It is a non factor in my life so going forward i will not be drinking at all. That way I 100% rule out that as a factor.

Last edited by dtm74; 02/23/18 03:34 PM.

-Male, age 43, no smoke or chew, mod drink, HPV -
-started with canker that wouldn't go away
-biopsies over next 8 years showed moderate dysplasia only
-8/13 biopsy showed cancer T1N0M0
-9/13 Partial Gloss w/ free flap from left wrist w/ neck dissection, trach, - no node involvement, no chemo or rad
#195765 - 02/25/18 09:20 PM Re: 2nd Recurrence 4.5 yrs out [Re: dtm74]  
Joined: Dec 2017
Posts: 14
Crapshack Offline
Member
Crapshack  Offline
Member

Joined: Dec 2017
Posts: 14
Truth is we have no idea where the limit goes (if there even is one as we're all individual cases) and wine isn't considered as detrimental as hard liquor and you certainly didn't drink a lot if it was only 2 a week. But I'm glad to hear your resolution! As someone else wrote here once, why tilt any odds out of your favour. I also had dysplasia for around 8 years before it turned into cancer and I still have no idea what caused it.

#195793 - 03/02/18 12:45 PM Re: 2nd Recurrence 4.5 yrs out [Re: dtm74]  
Joined: Sep 2013
Posts: 8
dtm74 Offline
Member
dtm74  Offline
Member

Joined: Sep 2013
Posts: 8
So i have the results of everything, have met with my doc, and have gotten a 2nd opinion at Dana Farber. Both recommended treatment plans were the same. The radiologist report for my PET says no cancer. Not even in the tongue. Both sets of docs say that means the tumor is too small to show. The PET report from the radiologist also said nodes are fine, but both radiation oncologists see a few nodes that concern them. The plan is to remove the area where the biopsy was taken to get clear margins. Won't be a flap surgery and won't need a trach thankfully. Would also do a left and right neck dissection to remove the nodes that concern them. Then 6 weeks of radiation. I have an MRI scheduled Mon to try to get a better look at the nodes that bother them. Chemo would depend on whether the nodes they removed were encapsulated or not (think that's the right terminology). I need to decide if i'm going to continue with my current doctor (non CCC) or switch to Dana at this point. I think i'm 95% sure i'm going to switch as much of what i've read on here says CCC is the way to go.

I considered this to be pretty good news overall. I've spent a lot of time on this site reading thru the posts about radiation treatment. Realizing its different for every person, it sounds like overall its a tough road. However, i'm confident its the right decision at this point and i'm very determined to get thru it. I've read a lot of Christine's posts on intake and the importance of 2500 cal per day min + 64 oz water min. Few questions:

1) How have people accomplished that goal who have had severe swallowing issues? Does it generally include an ensure type product or can anyone provide some examples of how they succeeded in meeting that goal
2) Does anyone have any other recommendations for "getting thru it" - anything that they felt was key to their success

Thanks for all the support. This site and the people on it are amazing and a tremendous comfort during a scary time.


-Male, age 43, no smoke or chew, mod drink, HPV -
-started with canker that wouldn't go away
-biopsies over next 8 years showed moderate dysplasia only
-8/13 biopsy showed cancer T1N0M0
-9/13 Partial Gloss w/ free flap from left wrist w/ neck dissection, trach, - no node involvement, no chemo or rad
#195794 - 03/02/18 01:12 PM Re: 2nd Recurrence 4.5 yrs out [Re: dtm74]  
Joined: Oct 2012
Posts: 997
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 997
Toronto, Canada
At our hospital, all patients who undergo radiation get a feeding tube. Then one can choose to use it or not depending on the need. You may want to talk to your doctor about the strength of the radiation and if it would likely impact your swallowing. I find that if patients ask, doctors will tell them, otherwise some doctors just omit telling their patients these things. Good luck!


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Page 1 of 2 1 2

Support OCF


Help OCF

Shop Amazon and Help OCF

Who's Online Now
0 registered members (), 24 guests, and 1 spider.
Key: Admin, Global Mod, Mod
Forum Statistics
Forums23
Topics17,266
Posts192,186
Members11,734
Most Online306
Aug 21st, 2016
Top Posters(All Time)
ChristineB 10,116
davidcpa 8,311
Cheryld 5,260
Brian Hill 4,743
Gary 3,552
Newest Members
Bobm, homestrong, Rabbit, BCGeorge, Johnny G.
11733 Registered Users
Brag Box
Powered by UBB.threads™ PHP Forum Software 7.6.0