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#196585 - 06/07/18 11:17 PM It’s back  
Joined: Mar 2018
Posts: 6
Movingalong Offline
Member
Movingalong  Offline
Member

Joined: Mar 2018
Posts: 6
Hello,

Back in February this year I had a white patch removed and biopsy showed dysplasia/precancerous. This morning, I noticed as I ran my tongue over the site that it had a metallic taste, same as when I noticed it the first time. When I looked, it is a dark pink sore, right in the same spot that was biopsied 4 months ago.
I’m going in on Monday to see the maxilofacial doc who did my last biopsy, so I’m not here looking for anything other than just moral support. I want to believe that it’s just where I bit the skin off as I have a habit of chewing my cheeks. But it’s suspicious to have it in the same spot the white patch was in before. Why did it come back reddish? Has anyone ever heard of this type of return? And, can another biopsy be done in the same spot?
Maybe it’s not precancerous anymore but actual cancer. Maybe that’s why it’s red. All it took was 4 months. I’m shocked. I can’t believe I may be going through this. I’m only 41. Life has been hard day in day out and now this. I was hoping for a quick death, not a painful and protracted one. I’m still numb now. Im going to get my medical POA together and start making plans. I never saw this coming.

#196586 - 06/08/18 12:03 AM Re: It’s back [Re: Movingalong]  
Joined: Jul 2009
Posts: 1,381
David2 Offline
Patient Advocate (1000+ posts)
David2  Offline
Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,381
Los Angeles
Moving, please take a deep breath. As anyone here will tell you, it's not cancer until the biopsy unequivocally says it is. I realize it's hard to keep the anxiety down: I'm a classic worrier and have sat where you are. But I urge you not to jump to the (usual of course, can't fight human nature) morbid conclusions. Even if it IS malignant - and I'm only saying this to reassure you, not in any way as predictive - the world today is a place of great treatments and modalities.

So again, I urge you to sit down, look around, and realize that the medical community is there to help you, as are we. And that this could turn out to be something benign.

We're all here for you. Please rant on all you want. I'm sure others will weigh in with similar and even more-educated advice.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 9 years all clear in 6/18
#196591 - 06/08/18 03:46 AM Re: It’s back [Re: Movingalong]  
Joined: Jun 2007
Posts: 10,051
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: 10,051
PA
Im very sorry you are going thru so much right now!!! Please do yourself a huge favor, go back and read your post, absorb it, then read it again. Try to view this from an outsiders perspective, your post has so many "maybe's"! I call that the "what if" way of thinking. Its speculating about something you have absolutely no control over. I feel your pain and I completely understand what you are going thru. But, at the same time you're ten steps ahead of yourself contemplating your own demise and how you will prepare for it.

We have a saying around here... "its NOT cancer until the biopsy says it is". This is especially relevant to your situation with having the dysplasia return. I was afraid this would happen. I remember mentioning dysplasia frequently returns in a previous post so if it happened, you would not jump to conclusions. At this moment you have NOT been diagnosed with cancer. You joined our group for info about dysplasia. The odds are against it ever becoming cancer. Honestly, to me (as a survivor of having oral cancer 3 times within 3 years and the 3rd round having a very slim chance of survival) I see you are a very, VERY fortunate person to be here with not being diagnosed with a potentially life threatening disease, oral cancer.

Since our members are OC patients/survivors and caregivers dont be surprised if we do not know how dysplasia presents itself. Our members do not have medical degrees or years of medical education. We can help others with info about what we ourselves have been thru, oral cancer, barbaric treatments and a long never ending recovery phase. There are only a very few members who have had their cancer start out as dysplasia. The majority of us never had or dealt with dysplasia so our knowledge is very limited. I suggest calling your physician, asking to them the questions you asked us and schedule an appointment to review your results in depth and to learn more about dysplasia from a medical professional.

We are all our own worst critics and enemies! If you need help managing your health concerns, a therapist and/or anxiety meds may be some tools to help you get thru this. Dont let the fear of the unknown take over your rational thinking. Take it one day at a time, count your blessings and for your own good stay positive and try to see how lucky you are.

Hopefully this change is not anything serious. Good luck!!!


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
#196592 - 06/08/18 05:14 AM Re: It’s back [Re: Movingalong]  
Joined: Mar 2018
Posts: 6
Movingalong Offline
Member
Movingalong  Offline
Member

Joined: Mar 2018
Posts: 6
I have made an appt for myself for tomorrow, this time with a different doctor, due to time constraints. If he thinks it’s warrented, I’ll do another biopsy. I’ll be able to ask him all the questions I have. Admittedly I’m quiet anxious. I’m moving to a new state in a few days, and day before yesterday they found blood in my stool. I just have a lot on my radar right now and didn’t expect this to present itself. I’ll be sure and report what I find out at tomorrow’s appt. Thank you both, David and Christine, for your replies.

#196593 - 06/08/18 10:11 PM Re: It’s back [Re: Movingalong]  
Joined: Mar 2018
Posts: 6
Movingalong Offline
Member
Movingalong  Offline
Member

Joined: Mar 2018
Posts: 6
I got another opinion today from a friend and young dentist very familiar with oral cancer. He did a thorough head and neck exam, and asked so many more questions than even the maxillofacial surgeon who did my biopsy. He said that after reading the path report and looking at the site in my mouth, that he didn’t think a biopsy is needed. He said it doesn’t look like dysplasia at all, but instead where I’d maybe bitten it. He said usually dysplasia is more diffuse, can be web-like, and doesn’t poke out in a tiny dot like mine does. He said to pick a day of the week and only look at it on that day-take a picture of it too. While it’s apparently not worrisome now, I still need to maintain vigilance.

#196595 - 06/09/18 09:49 AM Re: It’s back [Re: Movingalong]  
Joined: Jun 2007
Posts: 10,051
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: 10,051
PA
I see a huge difference between your initial post and this last one. Im very glad you have calmed down about the changes in your mouth.

Most dentists do not do oral cancer screenings. Its unusual to even see a dentist who will do a biopsy. Normally dentists in the US focus only on teeth, sending their patients to specialists for anything else. From my travels and talking with many dental students all over the US, their training Please use caution if you're seeing a dentist about dysplasia regrowth. Even doctors who have worked with oral cancer patients/survivors for many years can not distinguish thru an exam and just looking if something is cancerous or not. A biopsy is the only way to know for certain what something is. Any spot, sore, bump, etc that is in a patients mouth for 2 or 3 weeks that does not resolve itself needs to be checked by a professional. By the term professional, I mean an ENT who specializes in treating OC patients. Please be very careful and seek proper medical care right away if you notice any further changes.


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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