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#197692 12-13-2018 10:40 AM
Joined: Aug 2018
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ConnieT Offline OP
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ENT doc called to say she wants another biopsy done on the tumor by the end of the year after 2 scopes recently. Hoping she can fit it in so we are still under this year's deductible. I told her we were drowning in medical debt and half our income and would appreciate it if she could find a time. I gave her the 2 days we will already b3 in that town for other doctor appts and procedures. He was angry as he has believed that he was cured of this cancer. Maybe he is. Maybe he is not. He has made the healing journey a trek up a steep mountain. I don't know if it's hurt him or not.

I had read many of you go through this journey more than once. I'm trying to keep that in mind and not get too concerned. We will know nothing until the MRI and that biopsy result come back.

just an update. the journey continues.........

Last edited by ConnieT; 12-13-2018 10:54 AM.

Spouse of 58 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.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

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Connie... most of our members do NOT have a recurrence. It may appear like most of the more regular posting members have recurrences but thats not an good sampling of patients. If we look at all of our members you would see recurrences affect less than 50% of those treated. Many of our regular posting members spend more time here and post more often than those who were diagnosed, went thru treatment, the recovery hell and have happily returned back to their usual routines living life almost as they did pre-cancer. Many of those one timers do not want to be reminded of some of the hardest days of their lives so they avoid coming back. I was superstitious myself after my first round of OC. I was so terrified of a recurrence I avoided the recurrence section like the plague, I wouldnt read any posts there. My fears quickly changed when I realized by avoiding reading something in reality that played no part if I ended up having cancer or not.

With so many variables and your husbands struggles with his recovery, it could be any number of things going on. Sounds to me like his team is making certain to check everything. You never know if the tumor was completely eliminated with the original treatment plan or if something missed, or is the "spot" a brand new/different cancer, or is it scar tissue? So many things are possibilities. Best thing in this situation is the medical team is already in place and is keeping close watch on their patient. Taking a biopsy right away is very smart (and what all patients should expect) so they will know if he has something serious. Its so much better to have a proactive medical team than the "watch and wait" type!

Hang in there!!!

Main OCF Site... Oral Cancer Facts

Last edited by ChristineB; 12-13-2018 12:32 PM.

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
Joined: Aug 2018
Posts: 345
Likes: 8
ConnieT Offline OP
Platinum Member (300+ posts)
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Joined: Aug 2018
Posts: 345
Likes: 8
thank you Christine. It was concerning to get that call but I agree, sooner rather later is good. And thank you for the perspective that most of the members I'm seeing keep coming back to share and encourage and the majority go on with life so it's not a great sampling.

He's still ruminating that he has to go through this again. While I don't blame him, it might take many wake up calls to get his attention and take this cancer/healing stuff seriously.


Spouse of 58 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.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Joined: Jun 2007
Posts: 10,507
Likes: 6
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: 6
Its highly unlikely your husband would be treated with rads again so soon after finishing rads. That is of course, IF he has a cancerous tumor or not. Most OC patients who have a recurrence so quickly after finishing rads would be treated with surgery only. Sometimes patients can only get one round of rads. Its a case by case basis. Doctors develop a treatment plan for recurrences also take into consideration location of tumor, size, stage, length of time since had rads, patients entire medical history (including recent cancer) and what kind of shape the patient currently is in. I agree that this scare might be what it takes for your husband to understand OC really is a potentially deadly disease if not handled properly. Even when doctors, patients and caregivers do every single thing "right" a recurrence can still happen. Im hoping this is NOT a recurrence and your husbands cancer has been completely eliminated.

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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