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#140243 09-19-2011 03:14 PM
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Bean Offline OP
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Can Anyone tell Me what this means, Biopsy result reads "Squamous Mucosa with Hyperkeratosis and features suggesting Mild-Moderate DysPlasia, Negative for invasive malignancy" My Oral Surgeon say's it's not Cancer but He is sending Me to an ENT for a second opinion. This is My first post here but I have been reading here for Months and it seems to Me that I do have Cancer and I don't want to go through all of these treatments, do I have the right to refuse any Treatments and have You known Anyone that did? Thanks so much for Your time:)

Last edited by Bean; 09-19-2011 05:37 PM. Reason: miss spelling
Bean #140244 09-19-2011 04:05 PM
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Hi Bean:
I'm sure other Forum members will join in when they see your post, but just wanted to tell you my feelings. I think dysplasia is maybe a pre-cancer condition, but NOT CANCER. The ENT can verify this. I'm confused as to why you wouldn't want treatments if you did have cancer, when the treatments could save your life. Sure, treatments aren't easy, but to me that is better than doing nothing, and getting worse to where you would really suffer. You certainly do not have to take any treatments, but I've yet to meet anyone who refused a chance to live. I'm glad you came to this Forum because others will join in, I'm sure, to help you with your problem.
A Forum Friend,
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
Bean #140245 09-19-2011 04:16 PM
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"Dysplasia" basically means abnormal tissue -- but NOT malignant.

Here's how Brian Hill, the founder of OCF, responded to my initial question about dysplasia more than five years ago:

[quote=Brian Hill]Dysplasia are those cells which are no longer normal, but they are not really malignant yet ... an in-between state, so to speak. Dysplasias also do not always go completely over to the dark side, but they are a step in that direction ... and having them removed, or watched very regularly, is prudent. Dysplastic leukoplakias can often return after surgical removal, many times done with a laser, sometimes via a blade excision. Keep an eye on things even after the removal from now until forever.
[/quote]
As you can see from my signature, my husband had a leukoplakia (a white patch) that was initially diagnosed as moderate dysplasia. The pathology report warned of a possible "skip effect" -- meaning that there could be cancer in areas that were not part of the biopsy. (I suspect that the pathologist saw something suspicious but not definitive and wanted to sound an alert.)

By the time my husband had an excisional biopsy by an ENT a month later to remove the whole area of concern (the initial biopsy, by an oral surgeon, had just taken a tiny part), it had turned to the "dark side," as Brian put it -- but many dysplasias do not become malignant. And it was caught at the very earliest stage -- carcinoma in situ.

The excisional biopsy was the only treatment my husband had. Once cancer was diagnosed, he was seen by an ENT at a top-ranked comprehensive cancer center. Gradually the interval between appointments stretched out; he's now checked by the cancer doc once a year (and his dentist does regular VELscope exams when he goes for cleanings).

It's a good idea to have follow-up with an ENT. Ideally you want one who has experience in treating oral cancers and could recognize if a problem develops. The important thing is to, as Brian said, keep an eye on things even after the removal from now until forever.


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
Bean #140246 09-19-2011 04:25 PM
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Hi Bean,

Since you still suspect you have oral cancer, a good idea is to have your biopsy slides reviewed by experts in cancer diagnosis/treatment/research. I suggest getting a second opinion from a National Cancer Institute-approved Comprehensive Cancer Center or NCI Cancer Center. There is a list of them on the OCF website.

An ENT is not qualified to make a diagnosis of what appears on the cellular level--that is the domain of pathologists. And, even pathologists at local, community or regional hospitals are not always aware of nuances with SCC HN. However, an ENT will probably scope you, do a visual exam and palpate your neck, and look at your scans and reports (if any have been done) as well as pathology reports to see if there is reason to suspect you have cancer. If you have a precancerous condition, the ENT would give an opinion on what he or she thinks is the best course of action.

Again, a second opinion from a CCC would be your best bet for getting reliable information about diagnosis as well as treatment options for cancer or for a precancerous condition. A CCC may confirm what you were told by your oral surgeon and/or regional pathologist. There are standards of care in the industry. But, you will want to have professionals who see more oral cancer cases than the average local cancer treatment facility. Their experience goes a long way in being more precise in diagnosing and treating cancer.

If you are diagnosed with cancer, and treatment is available, please reconsider your position about refusing treatment. It is an awful and painfully torturous disease when left to progress without intervention aside from attempted pain relief. Many people here, through either observation or anecdote, will attest to it being a horrendous way to die.

From what I glean from your post, you do not have a noticeable tumor but only some irregular cell activity. You are on top of your oral health--you will most likely be able to catch it at an early stage should it turn cancerous. Since early detection is crucial, it would seem you have the best chance for getting the least destructive treatment and the highest chance of a cure with relatively minor affect on your quality of life.

However, if you refuse treatment and then change your mind later, the cancer will become more advanced. It will be harder to treat, will cause more problems with future quality of life, and your chances for long term survival will be reduced. That is, if it isn't entirely too late to treat it. Besides, many here will agree that they do not regret having treatment. They are happy to be on this side of the grass and still sucking air.

We know our bodies and know when there is something that seems wrong. However, we can also let our imaginations get the best of us and worry before there is anything to worry about. Please don't do a great deal of worrying until someone gives you a definitive diagnosis of cancer. Cancer steals enough of a person's life. Do not give cancer anything until it demands it--which, it's possible it may never put its demands on you. Live your life, try not to worry, and think in positive terms. Focusing too much on illness, worrying, and having an attitude of doom is often self-fulfilling.

Get enough opinions to make you feel confident in your diagnosis. But, eventually, you will have to trust your doctors and act accordingly. Believe me, I know it isn't easy. If you get a diagnosis that you are cancer-free, rejoice!!! There is much living you will cheat yourself out of by dwelling on something that doesn't require more than a watchful awareness.

Good luck to you. I hope you are cancer-free!

Sandy

Last edited by Sandy177; 09-19-2011 04:36 PM.

Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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welcome, Bean. There is a saying on this forum that it is NOT cancer until a biopsy says it is. Sounds to me that what your biopsy says is "keep an eye on it" but a visit to the ent hopefully will ease your mind.

Last edited by ChristineB; 09-19-2011 06:33 PM.

David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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Thank You all for the quick responces but maybe I should give You some info on Me and My situation,,,I am not young, just turned 58 on Sept. 11 and i have 3 grown Son's and one DIL ( who just had both Her Parents pass away) and a Husband who is 9 yrs.younger than Me, My Mom has advanced Alzheimers and is in a Nursing Home and My Dad passed away many Yrs. ago. I have one Sister who has new Grandchildren that She helps care for and I work for the State in a group home for the Mentally Disabled and I carry the ins. for Us. I don't want to put My Family through taking care of Me,,,They have jobs that are very demanding and need to work to provide for Themselves,,,My Husband just lost His Mother 2 weeks ago and is devestated by this loss. Medical issues are NOT anything He can deal with,,,,so, I will have No One to help Me with all the issues I may face and all the treatments will bankcrupt Us, I am not looking for any pity as I have done this to Myself. I am a hard worker and a good Friend and Mother and a Good Daughter,I took care of My Mom for many yrs. while still holding My Family and Job together but I know that I can not place this burden on Them all as They need to keep doing what They are doing to survive so if it turns out to be Cancer, I just want to live and work for as long as I can and then Maybe go into a Nursing Home till I pass with Hospice, I used to volunteer for Hospice so I know how kind and good They are, right now, this is My plan,,,,maybe if My situation and age were different I might feel differently, still numb by all this,

Last edited by Bean; 09-19-2011 06:19 PM. Reason: miss spelling
Bean #140258 09-19-2011 06:43 PM
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Bean, welcome to OCF!

At this point I would suggest to follow the advice already given to you and get checked out by an ENT. Then you can even follow that up with a trip to a cancer center. From what you wrote, you do not have cancer yet. Dysplasia can turn into cancer but not always.

Your age is NOT old!!!! I hope to still be around when I am 58, I really am hoping to hit 70. Its pretty drastic saying your plan to go into a nursing home then to hospice. Right now you have not been diagnosed with cancer. Sure medical treatments are costly but nursing homes can be tremendously expensive as well. Please continue to enjoy your life! I would suggest taking one step at a time as well as one day at a time before making drastic life ending plans.

Have you discussed any of this with your family? Do they know your plans? A family helps each other and cares for each other. I am sure if they knew the full situation your family would have something to say about your plan. Please talk everything over with them and also your medical professionals. Dont give up before the battle even begins!!!!!


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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Bean...

IF IT IS CANCER you caught it in the beginning stage, it might not be a stage. Being 58 is not old you have many years ahead of you, I'll be 65 and a widow.

As far as not bothering your family with your issue I think they would be upset if you didn't sit down and talk to them about your medical issues. I didn't want to bother anyone when I found out. I told my family take me to the hospital for surgery and pick me up when I'm ready to come home. After that I was alone during the day, took care of myself, after work they would come over, fix dinner, see if I needed anything then they went home. My dinner was milkshakes for 2 weeks. I was back to work the 3rd week.

Go to the ENT see what he has to say, write everything down because you won't remember what he said. Let us know. Don't give up !!!! We are here for you.

Take care,
Connie


SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.

CT Scan 9/11 clean, CT Scan 9/12 clean


Moffitt Cancer Center in Tampa, FL. A+.

My hometown Lockport, NY.



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Bean Offline OP
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Thanks to all for the Information,,,I've got Myself dying here but I will wait to see what the ENT has to say, what is scoping, I don't understand? I have a sensitive gag reflex so I doubt I will be able to handle this at all:( I Thank You all so much for Your support and wish You all a long Healthy Life! Bean

Bean #140266 09-19-2011 07:49 PM
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Have some faith in yourself!!! You have a whole army of support right here to guide you along.

Scoping is something that you will get used to. It sounds horrendous, but its no big deal after the first couple times. Its a tiny flexible tube with a light and camera on the end. This gets put up your nose and down your throat. The doc will use numbing medicine so you barely feel it. The numbing medicine will take care of your gag reflex. To get scoped, it takes longer to get numbed up than it does to do the scoping. Its another important medical tool to help the ENT make sure you are healthy.


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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