Previous Thread
Next Thread
Print Thread
Page 1 of 7 1 2 3 4 5 6 7
Joined: Apr 2006
Posts: 11
aimeeb Offline OP
Member
OP Offline
Member

Joined: Apr 2006
Posts: 11
After reading the board for a while, I've noticed that a lot of the group has had a reoccurrence of their cancer. I have to admit it concerns me (as I don't want to have to deal with this again) and makes me wonder if the numbers are skewed because those who have had a second bout with cancer are more likely to be on the board.

My ENT told me that with a Stage 2 tumor, removed with clean margins, and clear lymph nodes that I had an 85% chance of a cure. I know you're not doctors, but does this seem reasonable? What have others been told about the odds after their first treatment?

Thanks in advance, Aimee

---------------------------------------
SCC of tongue, T2N0M0
Partial glossectomy, modified right side neck dissection 2/06


Stage 2 SCC of tongue, surgery only 2/13/06. Margins & nodes were clear. No rad or chemo deemed necessary. Recurrence found 4/07. Surgery 5/22/07 with Cisplatin x 3 and 33 IMRT. Died 12/28/07.
Joined: Apr 2006
Posts: 7
Member
Offline
Member

Joined: Apr 2006
Posts: 7
Hi Aimee -
I too look for recurrences in this forum, as my husband has had 3 of them, so the subject (and statistics) are of interest to us also. He was first dx in March of 2002, with small lesion in cheek. BTW, he has never smoked or chewed, nor is he a drinker. He is now 61. That was removed, neck dissection - clean nodes. He had skin removed from leg and a bolster holding the graft in place. Because it was small and margins clear, they opted against radiation. It recurred again last year, even smaller and he again had more surgery, removing 2 lower back molars and surrounding tissue. Opted against rads again, because of small size, clear scans and clean margins. Now it popped up again about over a month ago, and by now, I am sure people are thinking that we should have had rads and it would not have reoccured, but his radiologist said that they would have aimed at a different part and he felt that it possibly would have made no difference, because this latest lesion appeared on top this time. Again, his surgery involved losing that top last molar (same side) and tissue...once again, so tiny that margins were clear. The ENT said the lesion was about the size of an "e" in this email. His latest PET and CT scans were clear from lungs to brain to oral cavity, or as they say, "no activity". We still question whether avoiding rads is the right position, but his oncologist, ENT, AND even the RADIOLOGIST said they could see no reason for it at this time because they seem to "get it all" each time. They think each one has been a "primary" tumor. He just had a post-op check-up yesterday and the doctor was very pleased. Anyway, to answer briefly your question, my husband's DID recur, but he never had rads, so only God knows if that's why or it would have come back again anyway. Hope that helps. I hope that yours never returns also. The people in here are the most helpful and supportive group of people I've ever encountered, so their personal journeys and sharing of experiences has been extremely helpful to me and others. I am grateful for Brian and others who founded this site and keep it so chock-full of information and updates.
One last thing, and this is pure conjecture on my part. We ALL wonder what triggers the cell malfunctions. For some odd reason, my husband's all seemed to show up right by a gold filling. Now I know gold is inert and pure, HOWEVER, there are alloys in fillings, and in my OWN mind, I sometimes wonder if something in those fillings irritated and reacted with the chemistry at that spot in his mouth? Those teeth are all gone now, so we shall see if my theory is "swiss cheese" . Our minds continue their "search".

Joined: Aug 2003
Posts: 1,627
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Aug 2003
Posts: 1,627
Hi Aimee,

When I was diagnosed I asked my doctor "what are my chances"? His response to me was "this cancer will either kill you or it won't". When I first came to this website I was kind of hung up on talking about statistics, it's our fear that makes us need to do that. Truth is, no one, and I mean NO ONE, can predict what our outcomes will be. Your fear will slowly start to subside and you'll be able to accept that the only guarantee you have right now is this particular day you're living in. Once I got to that point, life was so much more enjoyable. I still have my times of fear, but the fear is far smaller and more manageable. I'm a three year survivor now and I feel confident that I'll be around this message board for many more years to come.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
According to the 2002 report of the American Joint Committee for Cancer (AJCC) Oropharynx, 5 year survival rates for stage II are about 57.3%.
This doesn't factor in your general health, health habits, sex, age or ethnicity. We have had many discussion about statistics and it is best to ignore them.

I am not going to become a number until I am dead.


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)
Joined: Mar 2006
Posts: 99
Senior Member (75+ posts)
Offline
Senior Member (75+ posts)

Joined: Mar 2006
Posts: 99
Minnie, I just have to say that was very good advice and I'm going to follow it too. I too have been too fixated on trying to figure out my husbands future and today is passing us by.

Thank you
kerry


Kerry/wife of stephenm
StageIV - Base of Tongue T4N0M0
XRT x42 / Taxol and Carboplatin x4
Tx. Finished 5/08/06
Joined: Apr 2006
Posts: 2
Member
Offline
Member

Joined: Apr 2006
Posts: 2
I haven't posted before but, let me say this. Everything, little taste bud, tiny white spot, some bump, makes you want to go screamin from the house. You think ok, what? Fillings? I had my well water tested. Bottom line is...it is what it is. You got it who knows why. I played in ddt fog when I was a kid, is this why?

Who knows...doesn't matter, here we are let's deal. Have some hope. We can do this.

I really am glad I found this site. Tell you the truth, I don't feel worthy enough to be here. Gratefull to everyone here. Thanks. I have a pretty positive attitude and will support anyone who needs me.

Joined: Mar 2002
Posts: 1,140
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Mar 2002
Posts: 1,140
Likes: 1
Theresa, you have the credentials, so join in. Nothing unworthy about it. I like your attitude which parallels mine. When I was a kid I cleaned the manual typewriter (remember those, people?) keys with carbon tetrachloride, which is now known to be a carcinogen, but I didn't drink it. Bottom line, who cares why, when all is said and done? That we are here is what counts.

With regard to stats of reoccurence, they are an AVERAGE. I am definitely not average and in fact no one is, so that is how much weight you should give to them. I am too tired to get up on my soap box about this, but remember that time spent worrying about something that may happen, is time wasted, that could be spent in happier pursuits. If there is a reoccurrence, then worry is justified. Just go to checkups, live a healthy life, and have some fun.

Joined: Apr 2006
Posts: 378
"Above & Beyond" Member (300+ posts)
Offline
"Above & Beyond" Member (300+ posts)

Joined: Apr 2006
Posts: 378
Hi All, I think this is a great theme because Aimee has identified the fear that all of us struggle with - is any of this working and has it been worth it to go through the pain of surgery, chemo or radiation? Are we going to survive these cancers that have invaded all our lives? I don't pretend to have any answers to that but I am trying to find the balance between my hope and fear that Jack's cancer is really gone.

It's just too soon in my case because he only completed radiation 3 weeks ago, and has the 4th cycle of chemo next week - if his counts hold up. Like you Aimee his surgery was in Febuary so I think some of the fear is about adjusting to a fairly new diagnosis. My husband did not smoke or drink either but it really doesn't matter we're still dealing with it.

Thank you Minnie for sharing that fear will subside over time and that it never goes away completely. For me that's comforting to know. Sometimes I feel grossly inadequate that I am not as brave or positive as so many people on this forum. But reading this today made me realize it's a process with a lot of ups and downs, and it takes time to get to a healthy place. We still need to experience our feelings in order to face our fears and let them go. Medication and counseling also helps.

My husband is making progress since he completed his radiation, he is feeling better in general and is swallowing some soft food. His counts are low so they're treating that and we're hoping he will be able to have the chemo next week. We're hoping the 30 miserable shots of amifostine did some good, and that he won't be too beat up by the last cycle of cisplatin. We're hoping the feeding tube can come out after his follow up in August and that he'll be able to eat again. We're hoping the trismus and lymphedema resolve, that his hearing improves, and that he won't need pain medication as time goes on. Mostly we're hoping he survives and does not get a recurrence - just like everyone else.

I thank you all for giving me some peace of mind and perspective today. Intellectually I know there are no guarantees but emotionally I'd still like to have one. It's good to strive to enjoy the fact that we have today but it's also good to know that if we can't do that up front it will come in time.

Regards JoAnne


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
Joined: Mar 2003
Posts: 1,384
Likes: 1
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Mar 2003
Posts: 1,384
Likes: 1
Aimee,
you have pointed out the possibility that the forum population is skewed towards people that have had a more difficult time with their cancer cases. We have no way to know for certain (without a study). I believe you are correct that the forum population is not an "average" statistical population. Casual observation: we are younger (because of computer access), we probably are more caring (or needy, or both), we probably have had more difficult treatment and recovery cycles. I also believe that many people come here then, as they return to good health, drift back to a "normal" life. This means that the ones left remaining are the ones willing to help, or needing to help, or the ones needing help and support. A high probability exsists that we regular forum visitors are outside (and way above) "average".

Your question about statistics is similar to others we have had. Do some searching here and you will find many cogent discussions on statistics. In the final analisis, you will realize as Minnie has said, (and I like how her doctor said it) there is no way to predict what will happen.

Live each day fully and be happy when you can get out of bed the next day.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
Joined: Nov 2002
Posts: 3,552
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Nov 2002
Posts: 3,552
I have to agree with Mark, not to mention that the ones who are still here probably need therapy - at least I do anyway;-) It's hard to live in the world of cancer all of the time. But it is typical of any counseling or "people helping" experience, some come and take or get what they need then move on and a few feel indebted for this gift and wish to give back. It makes it all worth while, when occasionally, someone reports back that we made a difference.

It has recently occurred to me that I am suffering from this fear, still, even though I am one of the "lucky" ones - advanced staging, rad/chemo and a complete response to treatment with relatively few side effects. The emotional scars are now starting to surface at 3 1/3 years post Tx (Some mild neuropathy and neck muscle spasms are far as the physical stuff goes). Go figure that one out. I honestly don't know how anyone can drift back to a "normal" life after this. They either must be made out of something that I am not or they are in complete denial. We often speak of the "new normal" and I am still learning just what exactly that means.
From a sheer numbers perspective OCF is still a microcosm in the world or oral cancer and there are 10's of thousands of oral cancer patients, annually, who are not aware of us. There are 30,000 new Dx every year, we average about 1,000 new members per year. How many "lurkers" there are is anybody's guess. There are a lot of hits on the site.

I fully second Marks last line...


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)
Page 1 of 7 1 2 3 4 5 6 7

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5