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#136495 - 07/09/11 04:34 PM Wondering if it's worth it
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
Hi folks -- I've spent the last couple of days scanning message boards for discussions related to my own diagnosis/treatment, which is tongue cancer, and I've gotten the best information from this one. So thanks for being here, and I hope you indulge me.

For the last 2 months since my diagnosis (initially thought to be upper denture irritation, which I've had before), I've gone through the expected biopsy, blood work, CT scan/PT scan, consultations with 3 oncologists regarding what to expect from a combo of radiation/chemo, plus having the PEG tube inserted in a couple of weeks.

During that pre-treatment time, the pain meds didn't agree with me (reacted to Vicodin and Oxy like they were the devil's poison and some did absolutely nothing), and I constantly had that sticky saliva which was just as compromising to daily life as the pain. Finally, the combination of MethylPREDNIsOLONE (steroid), 4 mg X 2, and Tramadol-Acetaminophen/37.5-325 also twice a day, has all but eliminated the pain and all dry mouth, aka sticky saliva...which I always found paradoxical...is gone.

So my dilemma is what if this thing is indeed under control? Is it a miracle or just one of those freak remissions? Why would I submit to torture (I know, I know, I should just deal with it) if perchance I don't have to? At least not at my age, which next Tuesday will be my 70th birthday. I don't want to feel miserable for an entire precious year when I have fewer of those left anyway.

I do see the oncologist team on Wednesday 7.13.11, and I intend to ask what the consequences might be (already anticipating the answer), but I'm seriously hoping they will tell me to give it more time, and if my situation does get worse, then I'll be able to proceed with Plan A at that time.

Any thoughts?


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#136497 - 07/09/11 05:16 PM Re: Wondering if it's worth it [Re: morgan44]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 282
Loc: Kansas
Hi,
Sorry you are having problems. First, I am wondering where you are having your treatment--are you going to a cancer center that sees lots of oral cancer, are your oncologists well acquainted with it? One place you can go is on this website for a list. I know you can find this list if you do a search on the internet as well, and others on this board usually have that link handy. This is our link, or you can easily search the oral cancer foundation site for NIH cancer centers. http://oralcancerfoundation.org/resources/index.htm#other

However if you have 3 oncologists in on your case and they tell you that you should have radiation/chemo, more than likely that is your ticket to survival. As to why you are thinking it is under control when all you have had is a biopsy, I could not tell from your post.

How large is/was your lesion, where was it located (is it base of tongue, rather than in the mouth), do you have lymph node involvement--all those are questions that factor into this question of treatment. If you are questioning your treatment plan, by all means seek a second opinion, and make it from one of the NIH designated ones if at all possible. Then you have made that second opinion really a valuable one.

Is it worth it? Well I think so. Sure, it is not a picnic. There have been folks older than 70 who have made it through treatment. You must be a "young" 70 year old or you would not be exploring the internet. One of the things I was told was to take one day at a time when it comes to treatment, get through that day. That was great advice for me. You may find you can get through it way better than you thought. Now, for me, after I got the aforementioned advice and "got myself together", I decided I was going to get through it and do well, did not know how that was going to occur, but it worked that way.

I'm a slightly built gal, who was a music teacher for goodness sake, not an athlete, and I think a lot of people who saw me thought I would not be able to maintain weight, especially without a feeding tube, but I did. If I had to use one, fine too, I was just going to keep my nutrition up. Plus I tried to get some exercise mostly in the form of walking every day.

Don't count yourself out before you even get to the main event!
Best,
Anne
_________________________
SCC ventral tongue 9/2010, excisedw/clear margins:8 X 4 mm, 1 mm depth
Neck Met, Oct/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11
GIST tumor sarcoma, removed Sept,'11,no TX needed
Non smoker

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#136517 - 07/10/11 04:13 AM Re: Wondering if it's worth it [Re: AnneO]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4805
Loc: Toronto canada
I totally agree - if they. Are giving radiation and chemo it sounds like Base of tongue cancer... Regardless though radiation is no picnic.... But it's 30-35 days of your life - chemo is done with it. A few months to recover (I'm at week 8 and feeling good) and you should find your new normal. the say it take one month of recovery fir every week of rads. You sound healthy and strong - please treat it waiting will only make the situation worse... Hugs and take care!
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#136528 - 07/10/11 04:04 PM Re: Wondering if it's worth it [Re: Cheryld]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
Thanks girls.

In response to Annie's questions ~~
I've been seeing the oncologists at the Foley Cancer Center affiliated with Rutland Regional Medical Center in Vermont, but I don't see them listed in the NIH index. (I didn't mean to imply that I had 3 individual opinions. These doctors have been involved in pre-treatment diagnosis and testing and have formulated the plan for treatment, as a group.)

The tumor is about the size of a nickel at the base (left side, toward the back, if that's what "base" means), and there is no lymph node involvement. I had a slight swelling of the left lymph node on my first examination by an ENT, who did a needle biopsy and that came out clean for cancer, so the assumption (confirmed by CT scan) was that the swelling was not primarily lymphatic which in turn caused the tongue tumor, but the other way around, and the lymph node's swelling resulted from bacteria buildup because of its proximity to the tongue tumor. And, by the way, in addition to going on Day 3 now of no pain, that swelling (which was minor in the first place) has now disappeared too.

As for being a "young 70" because I use the Internet for research, well, what can I say!! I've been using computers since they took up an entire room of their own and have watched and participated as IT progressed at light speed since the 1960's. Ironically, even after I retired, I taught classes on a volunteer basis to train "seniors" in computer/Internet basics.

In response to Cheryl's comments ~~
"it take one month of recovery fir every week of rads," that's what bothers me the most. Because using that formula, I'm scheduled for 8 weeks, so that's 8 months just for treatment alone. And from reading hundreds of comments, people who undergo that length and amount of radiation in the mouth do not regain their taste until much later, often not at all.

I've also considered my current health problems, COPD, which is well maintained by Spiriva, but which apparently caused some blips in the EKG I had which was a pre-surgical procedure for putting in the PEG. I have not met nor spoken with that surgeon regarding that, but my guess is that the combination of COPD and stress would make me a poor candidate for anesthesia.

I understand that everyone is different, and each person reacts differently to treatment, but I must also consider my personal quality of life, which means if I can remain relatively pain free by at least putting off treatment that guarantees I'll feel even worse for at least six months, as well as possibly not ever regaining the pleasures of eating, then this is the route I will take. If it becomes worse, spreads, or becomes unbearable, then of course I will rethink everything. And at least I will have all the knowledge I need.

Even the American Cancer Society advises to "Know Your Options: [At first diagnosis] Don't try to decide which choice is best at this point--just identify as many options as you can, even if some seem far-fetched.../different doctors might recommend different chemotherapy combinations at different intervals or different combinations of chemotherapy, surgery and radiation. Then again, the best treatment may be no treatment at all. Patients diagnosed with slow-growing cancers are often given the option of 'watchful waiting' if there are no serious symptoms."

Since I've gone several days now with "no serious symptoms" reappearing or becoming worse, call me a procrastinator, but I've also never been known to jump right into strange bodies of water before I've tested it for what may lie beneath!

I do plan to leave a voice mail for the primary oncologist tomorrow, relating my feelings on this, and ask him to call me when he has a few moments to discuss it. So stay tuned. And thanks much for your input!



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#136529 - 07/10/11 04:54 PM Re: Wondering if it's worth it [Re: morgan44]
misskate Offline
"Above & Beyond" Member (500+ posts)

Registered: 02/15/07
Posts: 780
Loc: San Francisco,CA
Maybe your symptoms are gone but the cancer is there. The side effects aren't so bad to go through in order to be healthy and cancer free again. Having this spread and get out of control will be REALLY uncomfortable. It isn't pleasant. Take care of business while you can.
_________________________
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!

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#136530 - 07/10/11 05:01 PM Re: Wondering if it's worth it [Re: misskate]
misskate Offline
"Above & Beyond" Member (500+ posts)

Registered: 02/15/07
Posts: 780
Loc: San Francisco,CA
Tongue cancer isn't slow growing as far as I know. I don't know the speicifcs of your biopsy but I would not mess around with this.
You have the option to erradicate this from your body and live a healthy rest of your life. I understand your reservations but having this spread or get worse lessens your chance of survival. It will be 1000x more uncomfortable than any treatments you have to go through. You should read through some of the posts here from patients who have had this cancer spread. Sorry to be harsh but I think you need to be a lot more aware of the gravity of the situation.

This is cancer you are dealing with- it isn't something to be reasoned with.
_________________________
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!

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#136553 - 07/11/11 02:07 AM Re: Wondering if it's worth it [Re: misskate]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 282
Loc: Kansas
Please consider getting a second opinion. I do not know about the extent of your COPD. You might not get your wish about remaining relatively pain free for 6 months. You have not put cancer behind you. Would that could have happened to me, and my lesion was smaller than yours.

Did they mention anything about HPV?

I don't know where you are in relation to an NIH cancer center but that would really be the best shot. These folks see lots of people with your cancer, and some of them have other health issues. They would be able to best speak to your problems. I wouldn't put it just like that to your oncologist when you speak to him/her on the phone, but it is the truth.

I don't know how long you can live with this particular cancer without having unpleasant effects from cancer if that is what you are talking about. It could be someone else has a guess, but that is all it would be. Perhaps what you are talking about is whether or not it is slow growing enough that you can get two or three good years before it gets to the point that you must have palliative care. At least that is what I think of when you say, "wait until it becomes unbearable", then you will rethink it. I am not sure there will be much rethinking to do at that point. This is not a "watchful waiting" type of cancer.

Again, a cancer center/hospital that sees hundreds, perhaps thousands of cases each year would be better equipped to tell you what your options are.

Anne


Edited by AnneO (07/11/11 02:16 AM)
_________________________
SCC ventral tongue 9/2010, excisedw/clear margins:8 X 4 mm, 1 mm depth
Neck Met, Oct/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11
GIST tumor sarcoma, removed Sept,'11,no TX needed
Non smoker

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#136556 - 07/11/11 02:39 AM Re: Wondering if it's worth it [Re: AnneO]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8281
Loc: PA
Oral cancer is a fast moving cancer and can not be cured with watchful waiting. Of course the decision will be a difficult one to make but it is your choice of how to handle this disease. Its wisest to go to a large cancer center where they are familiar with treating many head and neck cancer patients. A whole team will work together to cure you.

One thing that you need to understand EVERYONE IS DIFFERENT. I cant say this enough. Some struggle while others sail right thru easily. I had a pretty rough time but I was well enough to return to work just 6 weeks after finishing my treatments. I was not 100%, but I was feeling pretty good. Thats just me, who knows what your story would be. Everyone reacts in their own individual way to medications and treatments.

One very important thing to consider....if you dont try to fight this, you will not have a chance. By the time you change your mind and want to get treated, it could be too late. Please think long and hard about this.

Wishing you all the best!!!!
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#136561 - 07/11/11 03:20 AM Re: Wondering if it's worth it [Re: ChristineB]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4805
Loc: Toronto canada
It sounds to me like the location is the oral tongue - likely not HPV related. Is it inside your mouth? If so usually surgery is the first option of this kind cancer. Please get a second opinion. And take care.
_________________________
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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#136568 - 07/11/11 01:17 PM Re: Wondering if it's worth it [Re: morgan44]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Morgan

Good for you to question what to to do. IMO, if you do have a oral cancer tumor you leave untreated, you will die in a very unpleasant manner. Christine spelled it out: watchful waiting is never an option for tongue cancer. I'm a firm believer in watchful waiting for prostate cancer and a 75 year friend who does have prostate cancer has found it works great for him these last 5 years. But trust me, if you wait until it gets worse, your quality of life after TX will be much worse. It's hard to tell from your post without more info but it sounds like you could be a Stage I or II, which means you can be cured and still have taste, eat etc. If you wait until you are stage IV, you risk ending up like me, losing all ability to eat or drink, speak with an impairment, constant pain and a lifetime feeding tube. BTW, my life is still worth living and I have more fun than most people, but since your post implies that you are willing to risk dying than live like this, not getting TX now when the tumor is small and hasn't spread is pretty much a guarantee that you will undergo much more "torture" later than now.

Please ask your doctors to tell you the precise medical staging. It should be what Stage ( I thru IV), Tumor size (T1-T4), Node involvement (N #)and if it has spread (M)
We use that in our signature. You can see I was Stage IV, with a size T3 tumor and 2 Lymph nodes with cancer that had not spread (IV,T3,N2).

Foley Cancer Center (formerly Community Cancer Center) may have had the same initials as a CCC but at OCF we mean the official Comprehensive Cancer Center. As you have already found out, there are zero CCC in Vermont. The NIH website indicates he nearest NCI-designated Cancer Centers are in New Hampshire, New York, and Massachusetts. But lots of OCF posters get regional treatment from non CCC and do very well.
Your post give no indication of a remission, miracle or otherwise. Not having pain and sticky saliva is no indication of whether your cancer tumor is growing.

Last but not least, I understand your concerns. After my cancer came back, I wanted my ENT to
Quote:
tell me to give it more time, and if my situation does get worse, then I'll be able to proceed with Plan A at that time.
Her reply was that I would be very foolish to make that decision and when I pushed back, she graphically described how an oral cancer patient dies when they let the tumor grow: they either suffocate or else die when the tumor bursts through their face and neck or else spreads to the lungs. She had stubborn patients who did make that choice and she did say she could keep me doped up enough that I would not have any pain.
Like Eric S on this board though, I have promises to keep and miles to go before I sleep

Keep the faith
Charm


_________________________
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13

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