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#1366 06-29-2003 08:13 PM
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My husband told me just two days ago that his oral surgeon (he was having his jaw made ready for implants) found cancer in his mouth. All we know is that what he found was a stage II, and in the second stage of stage II cancer. What does that mean? We are going to see the Doc together in a week, but I can hardly stand not knowing what is going on. If I feel like this, what must my husband be feeling? It is like I am walking under water right now, or like I am living some other life. Can anybody give me some words of comfort as we wait for the appointment? It is hard not telling my family or people I can about what is happening. He doesn't want to share this info until we know more. He is a very private person. Help!

#1367 06-29-2003 09:48 PM
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Stage II means they caught it early. We all empathize with you as the worst time is going through the Dx phase before a treatment plan is given. When I got my Dx, I passed out in the ENT's office! I went on anti-anxiety meds for quite a while. Typically with stage II you will have many treatment options also, maybe even non-surgical. Hang in there! Breath deep, take it one day at a time.

The following information is on the American Cancer Society website: www.cancer.org

What Is the Doctor Looking for When Staging Cancer?

A cancer's stage is based on information about the original (primary) tumor:
The tumor's size
Whether or not the tumor has grown into other nearby areas
Whether or not the cancer has spread to the surrounding lymph nodes
Whether or not the cancer has metastasized (spread) to distant areas of the body


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#1368 06-30-2003 04:50 AM
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Dear Gary,

I cannot thank-you enough for your empathetic words. I will take your advise and take a big deep breath. It has been very interesting to read the advise that many of the messages posted have to offer. I already have questions to ask about treatment. Thanks also for the website info. I am wondering about the thought process that men go through in dealing with these issue that might be different than for women. How do I help him?


Patty at Kapowsinpals

#1369 06-30-2003 05:23 AM
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Staging information can be found right here on the OCF site at http://www.oralcancerfoundation.org/facts/stages_cancer.htm

As Gary has mentioned, a stage two cancer is good news as there is a high cure rate related to early stage oral cancers. Now is a time for information gathering, and learning as much as you can about this disease. The more you know the better your decision making will be as you go through the selection of doctors, treatments, etc. Please know that you can come to the board with the questions that come up in this process and someone will be there to offer answers, and support.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#1370 06-30-2003 06:02 AM
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Hi Patty,
After I got over the shock of the Dx, I immediately got into researching treatment options, mainly on the internet. I work as a consultant for radiological devices so I had some help on where to start. This site is a great place for information.

There are probably more than a few more tests he will need before they give treatment options. Some typical tests are:

Radiological: PET (state of the art -PET/CT AKA Image fusion), CT, MRI, chest x-ray, Ultrasound (sometimes)

Bio-physical: bloodwork, kidney function test, biopsy, exam w/endoscope (a very tiny one that goes down the nose -don't worry, they numb you first and you won't feel a thing).

After they have done ALL of these, then they will develop a treatment plan. If radiation is indicated, then they will have to write software for a treatment plan for that. (if I missed any, feel free to chime in)

Hopefully you'll have access to a coodinated team of doctors, usually of a radiation oncologist, oncologist (for chemo) and a head and neck surgeon or ENT.

The main thing to focus on at this early stage is to make sure that all of the Dx testing is done promptly.

I would think that the difference between men and women, perhaps, is we are possibly more resistent to having a PEG feeding tube put in - I don't know. Like we macho men don't like being hooked up to tubes or something.

I do notice a fair amount of caregivers (particularly wives) writing here for information, yet the patient doesn't -what does that mean - I don't know. Maybe Brian Hill can offer an opinion.

Advice from one man to another: This is a good time to suck in your pride and listen to medical advice, do your homework, get multiple opinions, EXPECT miracles, prepare yourself mentally for a little bit of suffering. Look for the joy in this and appreciate the life you have been given. Treat those you love with patience and respect and remember that they have no clue what you are going through as much as they want to help. Use this time to examine your old life and see how the new one can be improved on. Don't be embarrassed to seek help and support. It is a great gift for people to be able to help you. Take it one day (sometimes one breath) at a time and don't give up. Cancer IS NOT an automatic death sentence.

One last word: If you drink (or abuse substances), smoke or chew QUIT NOW!
Don't be an idiot - that stuff WILL kill you.
Denial is NOT a river in Eygpt.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#1371 06-30-2003 03:30 PM
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I just have to comment about the quality of this forum. To receieve responses so quickly has been a blessing, and I am so impressed with the caring and knowledge that is so freely shared. If my husband and I can get just a slice of this kind of care out in the medical world, we will be in good hands. I will return here often as his condition becomes clear and real to us. We have two little boys that are also going to need some understanding of what is happening and why Dad has to go to so many Dr. appointments.

I agree that there are demons named tobacco and alcohol. They certainly have reeked havoc with our lives. Why is it that physicians will say, "yes, your cancer probably has something to do with your tobacco use, but we find this cancer in non-users as well." I would appreciate some honesty.

Patty at Kapowsinpals

#1372 06-30-2003 04:14 PM
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Once someone has a diagnosis of cancer (which no matter what stage you have, has the potential to kill you), it does them little good to hear from their doctors that a lifestyle choice that they made likely brought them to the disease. They are already scared, their lives are in turmoil, they have new financial issues, and the hell of cancer treatment yet to go through. Adding to the psychic load with yet another negative yields nothing. A person that comes to cancer through the choice to use tobacco is probably already beating themselves up for this lifestyle choice without the doctor


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#1373 06-30-2003 07:37 PM
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Brian,

Thank-you for your comments about my issues with how cancer comes into your life. It really doesn't matter does it, because what is important is the process of healing. I think I am just mad that the "Big-C" has hit again in my life. My grandfather passed after a long bout with esophogeal cancer (he chewed big time,) and my mother is a 8-year survivor of lung cancer and I am so thankful for her health. But it is still so frustrating to be aware that she still sneaks smokes now and then...so my feelings about addictive substances are pretty harsh right now. I just want to scream. Where this journey will take my husband and me is still so scary you know?

Thanks again,

Patty at Kapowsinpals

#1374 07-01-2003 07:34 AM
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Hi All, I just wanted to say that my comment about substance abuse, smoking, chew, etc. was a general one and not directed at any particular person. I am rather passionate about this since my sister (at 47) and step mother (at 65), both smokers died from it. My grandfather had lip cancer from pipes. I have watched far to many die from these things and since the government (which is supposed to be protecting you) won't do anything about it, I have to speak out when the opportunity arises. I have been up close and personal with the death process and also the addiction one, having almost 8 years of sobriety myself (July 4th) and having quit smoking in 1976.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#1375 07-07-2003 07:58 PM
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Hello All,

We had very good news today from my husband's surgeon and we feel relieved. At this point the tissue changes were caught early- moderate dysplasia, along the gum line where chewing tobacco was in contact. I say "was" because my husband quit "cold turkey" after he was given the information about the potential cancer in his mouth. (He had quit drinking any alcohol a year ago incidentally.) This quick removal of the tobacco toxins has allowed for very favorable healing and much less visable tissue involvement already. Due to the positive changes that just getting off the tobacco has brought, the idea is to now be very vigilant in the next couple of weeks to see how far this trend takes him. If things settle down we will continue in this "watch and see" situation. He will continue the plan to do more implants which brought him to the surgeon in the first place. Ironically, the tissue that is of danger is NOT in the area of the implants, but due to the suspicious looking tissue, the doctor took a biopsy and sent the tissue in to the pathologist for examination.

We were certainly in a tailspin just after the initial conversations with the surgeon, so his much more encouraging news was welcomed. He was especially pleased that my husband has so quickly able to drop the chewing habit. This has made a huge difference in the initial outlook.

Sometimes the wake-up call works huh?

patty from Kapowsinpals

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