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possible new cancer? #198071
04-05-2019 12:27 PM
04-05-2019 12:27 PM
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ConnieT Offline OP
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ConnieT  Offline OP
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Oncologist was pleased with PET scan results. Radiology Oncologist....not so much. he is not sure if the area that lit up near his adenoids is cancer or inflamation. He is taking the case to a board of doctors to discuss. If they are not concerned, another scan in three months. Husband is very distraught understandably but I said..one day at a time, that's all we can handle anyway. I told him that i read of others who have had multiple oral cancers and are still around!

Still processing...........


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: possible new cancer? [Re: ConnieT] #198073
04-05-2019 07:06 PM
04-05-2019 07:06 PM
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ChristineB Offline
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ChristineB  Offline
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Im so sorry the PET results werent as expected!!! Having a PET scan light up is fairly common with patients who are still in their recovery mode. I know many here who went thru getting
false positives on scans, myself included. An infection or inflammation will light up the same as anything thats cancerous. I hope your husband will listen to your sensible approach to the PET results. Taking it one day at a time and staying busy will help pass the time until the next doctors meeting where more info will be given.

You are correct, theres been OCF members who have endured multiple rounds of OC. A recurrence is everyone heres worst fear!!! All OC patients go thru so much and to think about going thru it again can be mentally and physically debilitating.

Please keep us posted. Best wishes to you both!!!!


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
Re: possible new cancer? [Re: ChristineB] #198104
04-10-2019 04:39 PM
04-10-2019 04:39 PM
Joined: Aug 2018
Posts: 268
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ConnieT Offline OP
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ConnieT  Offline OP
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Posts: 268
thanks for the response Christine.

I am driving him to have surgery on the 24th. i believe it is for the feeding tube. that has been the worst issue this whole time for him. it's not healing. it was an open wound since they put it in Aug 2018. I haven't heard anything back about the possible adenoid spots. To be continued..........unfortunately


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: possible new cancer? [Re: ConnieT] #198105
04-10-2019 07:08 PM
04-10-2019 07:08 PM
Joined: Jul 2012
Posts: 3,253
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PaulB Offline
Patient Advocate (old timer, 2000 posts)
PaulB  Offline
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ConnieT,

I had a non healing peg tube site (stoma) after the peg tube was removed after 5 or 6 years. They closed the stoma site off with stitches from inside the stomach, and maybe something else. Turns out I have Barrettts Esphogus from the biopsy, but the peg tube site did heal, and closed, and had no problems since, at least with the tube site.

Good luck with everything!


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






Re: possible new cancer? [Re: ConnieT] #198108
04-11-2019 07:59 AM
04-11-2019 07:59 AM
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Posts: 10,409
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ChristineB Offline
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ChristineB  Offline
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The feeding tube site should heal within a few weeks. Of course theres too many variables that go with the average of it taking a few weeks for the tube site to close and heal. The first time I had my feeding tube removed I felt like it took forever to heal. Over the years and thru so many surgeries, all my doctors have always been nice enough to give me their precious time explaining things to me in great detail. From what I remember when my tube was removed it took me 4-6 weeks for the site to look like it has closed. My docs said it normally takes a few months for a feeding tube site to completely heal. Paul is correct, the doc can (and usually should) put a few stitches at the feeding tube site to keep the site closed which should help speed up the recovery time. Id guess from what Ive seen here and gone thru, for 6 months your husband must be very careful to avoid heavy lifting (anything over 20 pounds) and anything that could put a strain on his abdominal muscles which could cause the site to open back up. Even something like taking out the garbage could create a problem by straining his abdomen. I know your husband to marches to the beat of a different drum and you can only give him limited help and advice, I really hope he will decide this advice is something he will pay attention to. When the feeding tube is removed, an open hole into his stomach is left which could cause him all sorts of problems if he doesnt follow doctors orders. Even minor infections could potentially turn into major complications if he isnt careful.

I know you understand all of this and are facing an uphill battle to get your husband onboard. Maybe you could try printing out some important feeding tube info and "accidentally" leave your printouts laying in a place he will easily find them and that he's curious enough to pick up the papers and read them. If he sees you reading the papers, it might pique his interest especially if he sees you looking like you are reading something thats very interesting. While he sees you reading, you get called away (check something on the stove, go to the bathroom, make a pot of coffee, etc) and when you put the papers down, thats all it should take to get him interested enough to pick up and read your printouts smile . This printout trick may sound deceitful and I am not someone who advises anyone to be dishonest... but when dealing with stubborn, non-conforming patient you must think out of the box to get them to do what they need to do. This has worked for many other caregivers and gotten their patients to follow doctors orders all without any conflict or saying a word.

Best wishes to you both with the upcoming procedure.


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
Re: possible new cancer? [Re: ChristineB] #198109
04-11-2019 01:34 PM
04-11-2019 01:34 PM
Joined: Aug 2018
Posts: 268
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ConnieT Offline OP
Gold Member (200+ posts)
ConnieT  Offline OP
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Joined: Aug 2018
Posts: 268
haha Christine! you get what i deal with!

yeah advice or info out of my mouth seems to be quite useless to him. I do hope they get him on the road to healing. I was eating dinner the other night and he stood right in front of me cleaning it out. YUCKO. anyway, i'm ready for it to heal too!

He has been pretty good about not lifting heavy stuff. i, on the other hand, who has always been a weakling in the upper arm department, have become quite strong for the first time in my life due to having to take care of things because there was no one else to do it. I suppose that's not all bad.

anyway, thanks to all the responses. it is always appreciated and welcomed.

Last edited by ConnieT; 04-11-2019 01:35 PM.

Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: possible new cancer? [Re: ConnieT] #198117
04-12-2019 05:22 PM
04-12-2019 05:22 PM
Joined: Aug 2018
Posts: 268
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ConnieT Offline OP
Gold Member (200+ posts)
ConnieT  Offline OP
Gold Member (200+ posts)
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Joined: Aug 2018
Posts: 268
looks like they decided he needs a biopsy on the adenoid area. radiology oncologist took it to a board to get a second opinion. i feel like things are starting up all over again and I haven't gotten over the stress of the first round. hopefully it's not cancer and the biopsy confirms that.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: possible new cancer? [Re: ConnieT] #198118
04-12-2019 06:46 PM
04-12-2019 06:46 PM
Joined: Jun 2007
Posts: 10,409
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,409
PA
Im so sorry!!! I hope its just a problem with delayed healing after going thru rads. After going thru rads w/ chemo, Ive had many more biopsies taken on areas that didnt "look right". Thankfully they were all negative. Hoping the same happens with your husband. Maybe this will be a wake up call and he will begin to understand just how serious OC can be.

Wishing you both all the best. Please keep us posted.


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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