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#522 - 12/05/02 08:48 PM Odds of Second Primary or.....,  
Joined: Aug 2002
Posts: 76
Sherrie Lynn Offline
Supporting Member (50+ posts)
Sherrie Lynn  Offline
Supporting Member (50+ posts)

Joined: Aug 2002
Posts: 76
MI
Hi.....My husband had tonsil cancer in 7/2001,radical neck dissection, Chemo and Rad.
He goes to the Dr every other month and just had a chest CT scan 2 days ago. This nurse who was putting in his IV asked about his cancer and said
"Has it come back yet?" ...Dan thought maybe she thought his CT scan was because of a recurrence, but then it started to bother him. Does it ALWAYS come back??? Sooner or later? Are the odds of a second primary or metastisis higher?
Then after the scan a different tech or dr came out to take out his IV and asked how he has been feeling. This starting to make him nervous. The man asked about his cancer and treatments. Dan said they didnt' ask all these questions with his last scan. Is Dan reading too much into these comments?? He will find the results on Monday.
Thanks.


Sherrie wife to Dan, Tonsil cancer survivor, Stage IV diagnosed July/2001
#523 - 12/05/02 11:02 PM Re: Odds of Second Primary or.....,  
Joined: Mar 2002
Posts: 1,140
Joanna Offline
Patient Advocate (1000+ posts)
Joanna  Offline
Patient Advocate (1000+ posts)

Joined: Mar 2002
Posts: 1,140
Pacific Northwest
Sherrie Lynn, if anyone asked me "Has it come back yet?" I think I would explode! That has to be the most insensitive remark of the year. As a recent patient, I have chosen to believe that it will NOT come back in my case, and I know that it does not always. I seriously believe that someone should get back to that nurse and explain to her how truly awful comments like that are. I hope you have her name, and if you don't want a confrontation, at least write a letter to the head of the department where she works. I am just steamed that anyone would say that to your husband, although I am sure he handled it better than I would have. Hang in there!
Joanna, Mad as a Wet Hen

#524 - 12/05/02 11:12 PM Re: Odds of Second Primary or.....,  
Joined: Mar 2002
Posts: 4,738
Brian Hill Offline
OCF Founder
Brian Hill  Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,738
Boise, ID and Portland, OR
Don't read too much into the comments by a couple of technicians. While oral cancer has a higher recurrence rate than most other cancers, it is not inevitable that you will get it again. The first two years post treatment have the highest risk, at five years the statistics for most oral cancers to end up in recurrence drop to about a 13% chance. Then...get this, they start to go up again!!!! About 2% per year. This is a function of statistics and may not be your personal reality. I too was shocked recently when (now approaching my 5 year mark) I thought I was statistically out of the woods. One of our advisory board members and I were talking about the numbers, and he says,


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.
#525 - 12/06/02 08:44 AM Re: Odds of Second Primary or.....,  
Joined: Aug 2002
Posts: 76
Sherrie Lynn Offline
Supporting Member (50+ posts)
Sherrie Lynn  Offline
Supporting Member (50+ posts)

Joined: Aug 2002
Posts: 76
MI
Thank you both for your replies....Dan now says he isn't worried, he was just jolted by the comments made. He came home quiet and upset, so I know this effects him more than he will ever admit. He has always been very "I have cancer lets take care of it, if it comes back, well we do what we can then" But I don't believe he feels that way, he won't even come clean with me on his feelings.
Another wonderful member here emailed us and said we could find out the results sooner than later, but Dan wants to wait. Christmas shopping this weekend and he chooses to be positive and have a good weekend. I wish we would have waited until January to get this thing done!!

Thank you
Sherrie


Sherrie wife to Dan, Tonsil cancer survivor, Stage IV diagnosed July/2001
#526 - 12/07/02 12:49 AM Re: Odds of Second Primary or.....,  
Joined: Aug 2002
Posts: 246
kcdc Offline
Platinum Member (200+ posts)
kcdc  Offline
Platinum Member (200+ posts)

Joined: Aug 2002
Posts: 246
Boston, Ma
So, Joanna-what does a mad wet hen look like? Great analogy and point well taken because there is no place for insensitivity in our world.

Sherrie: as always, I am pulling for you and Dan and have the pom poms ready for good news. Concentrate on Christmas and each other.

Okay, so can I be mad as a wet shop lifting Winona Ryder(wearing a very expensive headband) who got caught???

Best,

Kim


kcdc
Wife of Dave,diagnosed with Stage III Tonsillar SCC,August '02
Modified radical neck dissection followed by radiation therapy
'There is glory and radiance in the darkness and to see we have only to look"
#527 - 12/07/02 10:31 AM Re: Odds of Second Primary or.....,  
Joined: Sep 2002
Posts: 642
digtexas Offline
"Above & Beyond" Member (500+ posts)
digtexas  Offline
"Above & Beyond" Member (500+ posts)

Joined: Sep 2002
Posts: 642
Houston, Texas
Brian,
I asked you a question in email that I agreed to post here concerning mortality. I have been wondering since the Doctors never seen to talk about it: what exactly kills us? My oncologist in the beginning told me that I was lucky that head and neck cancer usually stay local and don't travel around the body. My cancer is now gone. Yet, it did reach 3 lymph nodes in the neck and I am naturally concerned, as your earlier post suggested that it indeed does travel to the lungs and brain, as happened with George Harrison. My related question is, how do we die? Do new oral cancers choke us to death, is it from brain cancer, or what?
Thanks,
Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
#528 - 12/07/02 10:58 AM Re: Odds of Second Primary or.....,  
Joined: Oct 2002
Posts: 23
Rosalie Offline
Member
Rosalie  Offline
Member

Joined: Oct 2002
Posts: 23
Philadelphia
Brian,
I know you haven't had a chance to be in touch with me because of your busy schedule so I thought I would send you an e-mail.
The results of my neck dissection was negative Squamous Cell Cancer, but positive for thyroid cancer. 28 lymph nodes were removed. I now need to have my thyroid removed in January. My concern is my doc. said I do not need radiation because my lymph nodes were clear. What is your feeling aboout that.
Also, I have a lesion on the roof of my mouth that my doc is aware of. He seems to think it looks like an irratation, but he is watching it. I have had it for over a month. It feels like it is getting larger. I am insisting on having another biopsy. I feel so hyper sensitive when it has to do with anything in the Oral Cavity. I feel like I am on a mission.
Having been diagnosed with Oral Cancer in October has made it very difficult for me to focus on anything else. I see things so differently now.
I hope you are feeling well.
I am still waiting for the donation envelopes to arrive. I really would like to help in anyway I can.
Rosalie


Rosalie
#529 - 12/07/02 05:22 PM Re: Odds of Second Primary or.....,  
Joined: Mar 2002
Posts: 4,738
Brian Hill Offline
OCF Founder
Brian Hill  Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,738
Boise, ID and Portland, OR
Danny with your permission I will answer your question on the board. I think that it is an important one, and both it and the several answers you will probably get will be of value to others. As to its effect on those that read the message board, all of our lives have to be balanced between hope and reality. While to some ignorance may be bliss, the more we know about something the better chance we have of coping with it, be it disease or death. This of course requires an attitude that pulls your head out of the sand and forces confrontation with sometimes disturbing concepts such as our own mortality. Many of these ideas instill fear and require courage to cope with them. Just remember that courage is not the absence of fear, but rather the judgment that something else is more important than fear.

I find your doctors comment curious, and I do not believe it to be valid, just ask Dinah who is currently fighting a liver metastasis from an oral cancer primary. In part perhaps the doctor is correct in those that have their cancer caught early. The primary metastasis of SCC oral cancers is the cervical lymph nodes. So given this, he/she is correct in saying that it stays local, or at least in the head and neck region. But once you have cancer cells within your lymph system, even though local to the primary, they have free access to everywhere that system can take them


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.
#530 - 12/07/02 10:22 PM Re: Odds of Second Primary or.....,  
Joined: Sep 2002
Posts: 642
digtexas Offline
"Above & Beyond" Member (500+ posts)
digtexas  Offline
"Above & Beyond" Member (500+ posts)

Joined: Sep 2002
Posts: 642
Houston, Texas
Brian,
Thanks so much for your informed and very thorough answer to my questions. As unpleasant as oral cancer is to deal with , I guess that living beneath the " sword of damocles " just goes with the territory once the original cancer has been treated. At least we have something that most people lack...a real awareness of our mortality that should make us live more meaningful lives.

Danny G.


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.

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