Previous Thread
Next Thread
Print Thread
Joined: Apr 2006
Posts: 51
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Apr 2006
Posts: 51
Thanks in advance to anyone kind enough to share their thoughts and experiences with me. I was originally diagnosed with stage 1 SCC to left side of tongue in Nov 2001 at age of 27. Had partial left glossectomy and neck disection on 12/17/01 with clean margins and no spread to nodes. Had a recurrence of cancer, have had 2 incidences of severe dysplasia over the years, ealy March 2006 and on 3/31/06 had surgery to remove a .5cm SCC tumor from same left side of tongue but this time a bit further back. I have recovered well from surgery. Margins this time were clean of invsaive cancer but thin, <1mm on deep side and on medial side of tumor "in situ carcinoma" was present at margin. Radiation has been recommended given margin situation and recurrence and I have obtained multiple opinions all leading to this recommendation. I will be starting radiation treatment in 2-3 weeks,got pushed back as I had all 4 impacted wisdom teeth removed yesterday. My first question is regarding appropriate focus of radiation. I have one radiation oncologist saying I need both sides radiated including neck nodes and another radiation oncologist saying treatment should only be on left side of my tongue where cancers have been and with no radiation to right side. Any thoughts on what is standard for someone with 2 stage 1 tumors, would could argue 2nd tumor isn't stage 1 given its a recurrence, both on same side of tongue? Would also love to hear how I can best prepare for radiation given I have 2-3 weeks. I plan to continue working as long as I can and am hoping to get the first or last appointment everyday. Can someone tell me if I would be better off first thing in morning or in the evening if planning to make most of remainder of my day? Is it unrealistic to think I can work through most of it? My research suggests I fall into the this newer breed of oral cancer patients who are younger with less history of smoking/drinking but who have persistent recurrences of tongue cancer. Hoping to find others on this messenge board in similar situation to me looking to talk further. I'm being told post radiation treatment I will continue to be followed-up aggressively but I don't want to give up on searching for potential treatments which will help avoid future transformaion of my cells. Any thoughts? Lastly, should I be exploring Erbitux as a possible treatment in conjunction with radiation? Multple surgeons have told me there is no clinical studies showing Erbitux to be beneficial to somone in my situation with stage 1/2 cancer of tongue but that could easily be because studies haven't been done yet.


SCC on left side of tongue 12/01 left partial glossectomy, left neck disection (clean), recurrence 3/06 on back left of tongue, 2nd partial glossectomy, no nodal inolvement, IMRT completed 6/30/06
Joined: Apr 2006
Posts: 6
Member
Offline
Member

Joined: Apr 2006
Posts: 6
Do you have Squamous Cell carcinoma? If so there are studies that show Erbitux to help. IT has recently been approved by the FDA as a medication for Oral cancer the first new medication approved by the FDA in 20 years. SO I would look into it. Also look into combined chemoradiotherepy. It is radiation with lower doses of Chemo therepy at the same time a radiation. This has also been shown to improve chances. Also ask your radiologist about IMRT. This type of radiation it pointed more directly at your tumors allowing other tissue to be better preserved and also allowing a higher dose of radiation to be given to the tumor. Lastly I think you should have both sides radiated. I think you are noble to try and work through it but my friend just finished radiation it is brutal. Most people get nauseated and throw up. He slept alot and I think it would be very difficult to work through the course of treatment. I hope this helps.

Ginger

Joined: Nov 2005
Posts: 79
Senior Member (75+ posts)
Offline
Senior Member (75+ posts)

Joined: Nov 2005
Posts: 79
HI Warren,

My husband's cancer was on his tonsil with involvement of neck nodes on the same side. His situation was different than yours but the radiation oncologist said they were going to give a smaller dose of radiation on the opposite side because that is often a pattern of spread. They didn't detect any cancer there but felt they should cover off the possibility of undetectable cancer cells already being there.

As you will read here, many people with a similar diagnosis have had different treatments. John's doctors told us that, overall, combined chemo and radiation showed a consistent benefit of 8 percent and that cetuximab (Erbitux) and similar drugs combined with radiation showed a benefit of about 3 percent. They told us that tests are now underway adding Eribitux to the chemo radition mix but, unfortunately from my perspective, John was a few months too early to join the trial.

The numbers game has sprouted various discussions on this forum but, for me, it comes down to 2 things- one,even a consistent improvement in outcome of 3 percent means 3 whole live people out of 100 did better than they might have without it and, two, it's probably a good idea to play the odds wherever possible.

No matter what you decide, you should know that the swallowing can get really difficult and even pretty much impossible by the end of treatment and that the insertion of a PEG tube can ensure that you get nutrition no matter what. If you don't use it, then great but it you need it you will be really grateful. They took John's out about 2 months after treatment (early Feb) and now it's just a pink spot about 1 cm in diameter and fading.

The other thing to keep in mind is that if they give you heavy painkillers like codeine or morphine at some point , make sure you get a laxative as well or you will almost certainly have serious constipation problems that cause lots of discomfort and could have easily been avoided.

As a journalist, John was able to work for the first 2 and half weeks of radiation then was out of commission for about 3 months but now is able to work full time.

Mary


Caregiver for John SCC left tonsil Stage III/IV dx Sept 05, tx started Oct 21/05 -IMRT 35, cisplatin 3 X 100mg/m2;completed Dec08/05.
Joined: Apr 2006
Posts: 51
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Apr 2006
Posts: 51
Mary and Ginger, thanks for your responses. It was squamous cell carcioma and I will be getting IMRT radiation. Given there was no identified nodal involvement my doctors are recommending only radiation. My radiation oncologist at Sloan is recommending high dose on my left side and low dose on right side and I plan to follow that recommendation.

Can someone tell me if the effects of radiation differ depending on where in your mouth the cancer was. Mine was on my tongue (left side) and I keep seeing postings from people with tonsil cancer and am curious if side effects differ


SCC on left side of tongue 12/01 left partial glossectomy, left neck disection (clean), recurrence 3/06 on back left of tongue, 2nd partial glossectomy, no nodal inolvement, IMRT completed 6/30/06
Joined: Apr 2005
Posts: 2,676
JAM Offline
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
Hi Warren, glad you are getting good treatment. As a caregive, I would like to give you a few suggestions that might make your next few months easier. 1. Try to gain some extra weight now[unless you are overweight] 2. Once rad tx. starts, listen to your body and rest when it tells you to. If you can continue work-great-but plan on some "power naps" during the day. My husband [much older than you] had floor of mouth cancer with some tongue involvment the 1st go round. IMRT to both sides after surgery. No chemo. Since the recurance, he has had more extensive surgery, jaw bone replacement and is due to start chemo soon. The rad tx. wiped him out the 1st time [and he is a fighter]I haven't been able to determine from what I read here that there is any difference between whether you were being treated for throat,tongue, etc. as far as how you respond to rad tx. It seems to be up to each individual's tolerance. 3. Do think seriously about a PEG. If you get in trouble with swallowing, it can keep you alive. Keep the rest of your body as healthy as possible while you are having rad tx. Best luck, Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
Joined: Apr 2004
Posts: 837
"Above & Beyond" Member (300+ posts)
Offline
"Above & Beyond" Member (300+ posts)

Joined: Apr 2004
Posts: 837
Warren,

My tumor was also on the left side of my tongue, with no node involvement. I was 39 when I was diagnosed and have never smoked. I had conventional radiation (since IMRT wasn't even available then) and did not have chemo. I got through the first 2-3 weeks with minimal difficulty, but the last several weeks of radiation, and a couple of months following, were really tough. I never had a PEG tube, so I had to stick with soft/semi-liquid foods and numb my mouth ahead of time to be able to reduce the pain associated with eating. The biggest problems were mouth sores, thrush, coughing up phlegm, temporary loss of taste buds, and constant fatigue. After radiation ended, I had ongoing dry mouth problems, which I have dealt with using a combination of medication, Biotene products (available at many drugstores) and staying hydrated as much as possible. As you can see from other posts on this site, these are very common effects of radiation.

While I was pretty miserable for the last half of radiation treatments and awhile after, I was still able to work, at least part time, through the process. I always tried to schedule my treatments toward the end of the afternoon so I could straight home afterward. However, different people have different degrees of reaction to radiation, so try to be prepared as much as possible ahead of time. You'll find plenty of help and support here.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
Joined: Feb 2005
Posts: 2,019
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Warren,

I had Stage II tongue cancer on the left side and had radiation on both sides of my neck (after some debate and disagreement about it). I think they might have directed a slightly higher dose to the left side but I'm not sure. You don't mention if you had a neck dissection and whether it was on just the left side or bilateral. If you haven't had that, there is actually some chance that there is cancer in your nodes that can't be seen on a CT scan so it's really extra important to get both sides of the neck radiated.

I also had concurrent chemo (cisplatin) which made the whole radiation treatment thing MUCH worse than it would have been otherwise. But I don't regret having it. Since you have stage 1 tumors, I guess I can see why they are saying that's not necessary although, with a recurrence, I would want to throw everything at it that I could.

In terms of figuring out whether treatments which have not been tested on early stage cancers would help, my medical oncologist (who used to be at Sloan but moved up here to the country to raise his kids) told me that as a rule of thumb, if research shows some treatment has a certain rate of effectiveness with more advanced cancers (e.g. reduces rate of recurrence by 10%), you look at how the early stage rate of recurrence compares overall (e.g. for stage II it's about half of what it is for stage III/IV) and apply that ratio to the effectiveness of the treatment (so if chemo reduced rate of recurrence by 10% for more advanced cancers, you can estimate at least a 5% reduction in recurrence for a Stage II). Five percent sounded good enough for me to want the chemo, alhtough it wasn't, and isn't, standard protocol for a stage II cancer (but there's some disagreement among experts about whether it should be and the medical oncologist I saw for a second opinion, at Dana Farber, definitely believed it should be when there was some additional risk factor involved). You may want to talk to your medical oncologist more about this. Chemo alone is not so effective at getting rid of oral cancer but it's very powerful when used with radiation--and you only get to get radiation once!

I taught a course online thruogh the first four-five weeks of my treatment. But I really just barely kept on top of it, it was far from full time work, and I didn't have to deal with anyone in person or go into work. Again, I think I might have done better had I not had the chemo because it made me so constantly nauseated and one of the meds I took for nausea (compazine) made it literally impossible for me to read and comprehend what I was reading (I have no idea why).

As for the difference between treatment for tongue and throat, I have a friend whose husband was treated (at Sloan actually) for throat cancer about six months after my treatment ended. he has had a much easier time with recovery and I think part of it may be he didn't get as mich radiaiton to his mouth and has had much less severe mouth pain afterwards than I have had. Also he has all of his tongue whereas I don't and have a very restricted range of motion in the tongue I have left (worse after rad)so that has contributed to swallowing problems for me and he has no problems with that. It's ironic because he had a much more advabnced stage but he has had way less problems from the treatment than I have. But I'm not sure that's all due to the tongue/tonsil difference or other things as well.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"

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
Topics18,167
Posts196,922
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