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Squamous Cell Carcinoma (SCC) of the Head and Neck Info

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

I've seen many postings asking for info about SCC. I've been researching the subject for about 3 years now (since my original diagnosis). I have created a personal web page linked to the American Cancer Society home page that contains a lot of helpful web links on this subject at:
http://www.acscsn.org/webpages/view?user_id=48689.

In late 1999, I noticed a spot on my tongue that wouldn't heal. I went to the dentist and he sent me to an oral surgeon who confirmed a diagnosis of SCC of the left tongue. He initially told me he was "99%" sure it wasn't cancer but the biopsy results proved him wrong.

It is believed that this cancer developed as a result of chronic dental trauma (a chipped back molar that repeatedly lacerated my tongue).

In Feb 01, I had a partial glossectomy of the left side of my tongue. Since margins were clear, no additional treatment was received. I was followed closely by my ENT doctor and received good checkups for 2 1/2 years. The last checkup by him was on 7/3/03; two weeks later some problems arose.

In mid-July 03, I woke up one morning with a severe nosebleed and the next morning found a lump in the left side of my neck. After a fews weeks' of various testing (Xrays, CT Scan, MRI, biopsy), this was confirmed to be a reoccurrance of SCC. It is thought the primary source was the original site on the tongue.

I had a radical left neck dissection and my tonsils removed in Aug 03; along with almost 80 lymph nodes in my neck. That was followed by 30 IMRT radiation treatments which ended in Dec 03. I am recovering from the effects of surgery and radiation and overall, I am doing very well.

I am being followed closely by an ENT doctor, radiation oncologist, and dentist. My most recent PET scan on 2/16/04 indicates no evidence of cancerous tumors or hotspots from my head down to my mid-thigh. My chest Xray of 4/27/04 was normal.

I continue to practice "guarded optimism" and go with God!

lostdigit
Posts: 1
Joined: May 2004

I just had surgery - a neck dissection - to remove cancerous lymph node. Oncologist has recommended radiation therapy as follow up. I am concerned about the effects of radiation on my head and neck, and especially how it might affect my voice. What was your experience? How did you tolerate the radiation? Did you have long-lasting side effects?

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

I had a new form of radiation called IMRT. I had 30 treatments from Oct - Dec 03. I began experiencing side effects about 3 weeks into radiation. My voice became weaker, I developed mouth ulcers, a very sore throat, dry mouth, altered taste and loss of appetite, had some hair loss (which has since grown back), and suffered from fatigue. While this may sound daunting, overall it was not bad. Towards the end of treatment, I had some burns to my neck which responded well to medication and ointments. My voice is back to normal and I am feeling very good and eating well. I did develop a cough after radiation which I've been told is normal and it's now almost gone. I used Lortab Elixer during radiation for sore throat pain and that enabled me to be able to eat. It's important to try to maintain proper nutrition; especially during this time in order to heal properly. Actually, I tolerated the radiation so well that the hospital asked me to film a commercial for their cancer center; which I did in March 04 and it is now airing on our local TV stations. Here's a web link that will provide more info on IMRT:
http://www.brachytherapy.com/IMRT.html.

There are several types of radiation so I'd recommend you discuss further with your doctor. In my case, since this was my second reoccurrance with SCC, I opted to try to increase my survival chances by accepting the radiation treatments.

Good luck; I hope this info helps!

juclay
Posts: 1
Joined: Jan 2005

I was diagnosed with SCC in late August 2004. I was refered to MD Anderson for surgery that was performed on Sept. 29th. They removed 30% of the left side of my tougue and did a partial neck disection to remove lymph nodes. The pathology report was very good in that there was no detectable cancer present in the tissue around the leision. It was determined however, the leision had intruded dangerously close to nerve tissue and as a result, radiation therapy was deemed necessary. I then proceeded to undergo six weeks of IMRT radiation. It was a real effort to complete. At the 20th or so treatment I was ready to give up. My mouth was a raw mess along a total loss of appetite and taste. As a result I lost 45 pounds (25 of that I needed to lose). At any rate, my biggest problem has been a loss of caloric intake. I'm currently working on my 3rd week since my last treatment and no sign of my taste. Do you or any one else have a clue when the taste function might return? I've been told any where from a week to six weeks.

penny2001's picture
penny2001
Posts: 9
Joined: Nov 2001

They found your primary on the tongue? Did it travel to the lymph nodes in the neck? I have squamos cell carcinoma of the cervical lymph node without a primary....Pretty impressive title eh? You can visit my website at Penny2001 here at cancer nework.

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

Yes, the doctors believe the primary site for the cancer in my neck was from the tongue. I'll be sure to check out your web site. Hope you are doing well.

drama
Posts: 1
Joined: Apr 2004

Mine was found in my sinus area in April 2002. I've been dealing with this on my own and finally turned to this site. I'm feeling a whole sense of denial although my face looks like I've been branded and in a firey accident. I cry a lot and Tuesday I go in for more surgery...supposedly a reconstructive job...but I am not me anymore. In fact, today is my first outreach just to chat about this. Thank you for posting.

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

I know this can be so overwhelming; especially if you try to go it alone. I pray that you will find some peace and acceptance with your situation. Initially, I went though a lot of anger, denial, sadness, etc, etc, etc. But now, I have accepted my situation and am at peace. This may sound odd but my life has been so enriched after receiving the cancer diagnosis. I am now able to live in the moment and enjoy such small things in life. I have a little disfigurement to my mouth and neck but am so thankful to be alive that it really is not an issue for me. Please know that I care and will pray that you find the support you need so you can move forward in your life. There is life beyond cancer although it may not seem that way right now. I hope your surgery went well and you are on your way to a speedy recovery!

amarleaux2's picture
amarleaux2
Posts: 18
Joined: Jun 2004

Hello,
We(My husband and I were just told on 6/5/04 that he had squamous cell carcinoma nasal septum. Rare they say and are talking about removing his nose. we are sad, in denial and wanting to talk to people like yourself. want to know about treatments and getting support. I hope you write back.
sincerely alice

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

Alice, sorry for the slow response. I've been out of town for almost 3 weeks. I'm praying that you and your husband will find a positive way to be able to deal with his diagosis. Posting to this web site is a good way to help you both. Try to educate yourself as much as you can about his diagnosis and know that there are many cancer survivors such as myself that are here to help and support you. I know the thought of having his nose removed is scary. I almost freaked out at the thought of losing my tongue. But in this day and age, they can do WONDERS with plastic surgery. I was fortunate that I only lost about 1/4 of my tongue and have no permanent disabilities from my first surgery. My second surgery has caused some facial and neck changes and I've lost some use of my left arm. But I'm so happy to be alive that none of that matters to me. Please let me know how things are progressing along and I'll keep you and your husband in my prayers.

mdmurphy
Posts: 5
Joined: Jul 2004

Hi there ballonk,
Just read your posting on your tongue cancer experience, and couldn't help drawing a correlation to what I am experiencing right now. In Nov of 2003 I was diagnosed with tongue cancer and had a partial glosectomy. The surgeon said the tests looked good. He did mention that radiation is another possibility, but did not place an emphisis on it. So, me not looking for any more pain, decided not to go to the radiologist. In April 04, I noticed a lump on my tongue and went back to the doctor. He took a biopsy, and sure enough it came back positive for SCC of the tongue. Sooooo, back in the hospital again for a Hemiglosectomy, Neck Disection, and Radial Forearm Flap for the reconstruction of my tongue. It was quite an operation and the doctors at the Sylvester Cancer Institute (Civantos & Arnold) seem to have done a good job. Right now I am going through my 3rd week of Chemo & Radiation therapy. Chemo 1 day a week and radiation 5 days a week. The Radiology Oncologist subsrcribed 33 treatments of 90 rads to each side and 180 rads straight at my face. I have been starting to feel the side effects that you describe. Particularly the thick mucus, sore gums, and my lips feel like they are always chapped. I am taking a 500 mg shot of Amifostin before each radiation and Zofran to help with the nausea. I am not doing to bad. I am a curious person and when I asked the Radiology Oncologist how he calculated that I needed the dose and frequency that he prescribed, I felt he gave me the run around. Is it me, or does it seem a coincidence that most everyone gets 30-33 treatments of radiation? Anyway, I have been babbling on here for a while, thanks for your time and any feedback you give me to get through this.

oodeloo524
Posts: 3
Joined: Jul 2004

You're story sounds like mine. In oct i complained to my orthodontist about my braces cutting my tongue and he did nothing for 6 months. My general practicioner sent me to the oral surgeon who put me on antibiotics for 3 weeks with no result. He then took a biopsy to rule out cancer. I was diagnosed with SCC about two months ago the day before my 20th birthday. Two weeks later I had a partial glosectemy and a bilateral neck disection. I had a 3 inch by 1 inch tumor in my tongue and a 1 inch tumor in one of my lymph nodes with evidence of cancer in two other nodes. I also had a reconstruction done of my tongue since more than two thirds of it was removed. They made the "flap" using tissue from my wrist which will now forever be deformed but that doesnt bother me. I'm staring radtioan and chemo in less than a week and am a little worried about all the side effects I've been hearing about. I will be getting 3 chemo treatments and 7 weeks of radiation (hyperfractionated which is a higher dose twice a day and IMRT). They will be giving me amifostine as well. I'm looking for any information i can get on what to exect as I receieve my treatment. Thank you and I hope you are doing well.

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

oodeloo524: Sounds like you've really been through a lot! Is it thought that the braces cutting your tongue is what caused the cancer? That is AWFUL! But, you sound like you have a good attitude about the situation.

Everyone's reaction to radiation and chemo is so different. How are things going for you? It's been almost a year since my second cancer surgery and 7 months since I completed radiation. The only lingering effects I have from radiation is somewhat of a dry mouth and thicker mucus in my mouth and throat. Also, I have to eat slower and take smaller bites as my esophagus is constricted from the radiation. I could have it dilated if it gets to be too troublesome but so far, it's really not a problem. My appetite has returned and so has my taste. The only things I have problems consuming are soft drinks and tomato-based products as they burn my mouth. Overall, I'm very pleased with my results and you'll hear no complaints from me.

I hope you are doing well, also. Please post a message when you feel up to it and let us know how you are doing.

RadOncResident
Posts: 5
Joined: Jul 2004

Hi,

I am a radiation oncology resident and stumbled on your post while doing some research for another project. I will attempt to answer your question..having family members who are currently being treated for cancer, I have seen both sides of this disease.

Radiation Oncology as a field, relies a great deal on Evidence Based Medicine, meaning that most of the treatments we give are based on studies that have been done in the past that have shown benefit to those treatments. At the same time, we always try to weigh the risks and benefits of recommending a particular therapy to individual patients. For example, we obviously look at the stage and extent of a particular cancer, but also things like the patient's functional status and even their social support structure.

So, both the dose of radiation given and the amount per dose (aka fractionation) are based on years of clinical trials, and generally represent the best treatment we have at this point in time. This is not to say that something better won't come out in the future that may change our current viewpoints (which is why clinical trials are so important).

I urge all patients diagnosed with cancer (especially the more "unusual" types) to get treated at a major academic center, as physicians who work there tend to have much more experience with various disease. Also, major academic centers have weekly tumor boards, where specialists in all cancer treatment fields (surgical, medical, and radiation) meet to discuss individual patient cases. This ensures that the patient receives the best quality treatment. Also, from a physician standpoint, these tumor boards really do
motivate us to be up to date on the latest therapies and advances.

Finally, you should never feel clueless or misguided about the therapy you are receiving. If you don't understand something, ask. If you still don't understand, ask again. If you are nice and patient with physicians, trust me, we will be equally supportive. Sometimes, I admit, it is difficult if we have 30 patients to see in one day, but most physicians I have met in cancer medicine do genuinely care about their patients.

Hope this helps

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

Hi RadOncResident: Thanks so much for your posting. It has been my experience that those in the medical profession really do care about their patients and they will take the time to answer your questions. It helps to get your thoughts organized ahead of time and even write down the questions and take notes as the doctors/nurses answer them. I even had one doctor who provided his email address and I'd email my questions/concerns to him about a week before my visit so he'd be able to address my concerns in an efficient and timely manner.

Good luck in your studies!

kiren
Posts: 40
Joined: Jul 2004

Hi I had hodkins lymphoma 6 years back and got radiation and chemo and now I was in remission.3 months befor I found a lump on the base of my tongue and a biopsy confirmed squamous cell carinoma. MRI results show invovlement of lateral side of tongue and an enlarged lymph node..my doctor has yet to call me and tell me more about it.I want ot know how bad the diagnsis is and should I undergo radiation too in order to prevent recurrence.

RadOncResident
Posts: 5
Joined: Jul 2004

Hi Kiren,

You didn't mention where you received your radiation for Hodgkin's disease, which is extremely important in light of your current diagnosis (especially if you received radiation to your neck before).

I don't know what your tumor was staged as, but in general, for more advanced lesions of the oropharynx (which is the name of the general area where the base of tongue is located), chemotherapy and radiation given together has been shown to improve survival compared to radiation alone. This is something that your doctors will discuss with you.

Good luck and hang in there. Let me know if you have any more questions.

kiren
Posts: 40
Joined: Jul 2004

Hi thanks for taking time to reply. Well I had hodgkins before and my radiation was primariliy focused in the mediastinum(chest area). I have been seeing doctors and my doctor think I wouldn't need rad he wants to save it for future if I might need one. Right now it looks pretty good and it is not the base of the tongue sorry but lateral side of tongue. MRI of head and neck was negative, a lymph node is slightly enlarged which according to my doctors could be from the biopsy done on tongue a week before. They have to make sure though and will do a PET scan.So far they say it seems like a very small lesion only on the tongue. I hope and pray it is that way. If lymphnode is involved I would need a neck dissection, now that seems really scary to me. I am waiting for my PET scan to detrmine it and then we'll see what happens.

RadOncResident
Posts: 5
Joined: Jul 2004

Hi kiren,

From reading your post, I agree w/ the management plan that your doctor has chosen.
A PET scan can be very helpful in determining what the extent of your disease is, though it sounds like your tumor is in the very early stages.

A Neck dissection sounds really scary, but I have seen so many patients who are doing really well after receiving it, w/ only a hint of a scar. If it does in the end come down to a neck dissection, try to talk to a few patients who have undergone the procedure so you have at least a rough idea of what to expect.

Good luck,

kiren
Posts: 40
Joined: Jul 2004

Hi and thanks for taking time to reply. The good news is that my PET scan was negative and the doc did a surgery on the tongue last tuesday in which he successfully attained a clear margin. My tongue is healing pretty fast. The doc is positive that there is no lymphnode involvement because of the initial stage of the cancer as well the small size. He didn't do a biopsy but did an endoscopy which to was favorable and showed no signs of cancer spread elsewhere. So here I am today a week after the surgery and feel much better. thanks for everyone's support. I will continue a close followup with my doc from now on and hope cancer is a thing of past now!

tula3
Posts: 1
Joined: Aug 2004

HI I recently (NOV) had my last rad and chemo treatment for SCC of the throat. I have just found out that I am pregnant- one month along. Am I putting my baby at risk? I know you are busy but it seems like you would have a knowledgeable response. I really would appreciate it.

RadOncResident
Posts: 5
Joined: Jul 2004

Hi Tula,

Congrats on your pregnancy!! I imagine that you are receiving good prenatal care and that your pregnancy will be closely monitored by an ob/gyn doctor.

If you in fact had your last radiation treatments over 8 months ago, then your baby is not at risk for radiation exposure. In general, if you are receiving radiation by a machine, and not by implanted seeds, you are never "radioactive." The only time you yourself are exposed to high dose radiation is when the machine is turned on, which is why radiation oncologists worry about giving currently pregnant women radiation.

Hope this helps.

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

Hi mdmurphy - I am very sorry to hear your news. Now, having said that - it's not the end of the world. I cannot tell you how important a positive mental attitude is to ones' physical recovery from illnesses and diseases such as cancer. It doesn't have to be a death sentence; although it is very scary and will put you on a roller coaster ride of emotions.

I had a newer form of radiation called "IMRT" and completed my 33 sessions in Dec 03. I had a followup doctor's visit today and so far, all is OK. The only residual effects I now have from the radiaiton is somewhat of a dry mouth and thicker mucus in my mouth and throat. Here's a few of my thoughts on the subject of cancer:

1) It is so important to let those who love you help you during these difficult times - no matter how tough you think you may be. You do not have to go through this alone; and they need for you to let them help you.

2) A diagnosis of cancer does not have to be an early death sentence. Maintaining good nutrition and a positive mental attitude is important.

3) Get educated about your illness and ask your doctor and nurses questions.

4) Don't be afraid to live; embrace life! Love yourself and laugh often!

Good luck; I wish you well!

JudyAlexander
Posts: 1
Joined: Jun 2004

I am curious - my 35 y/o daughter has been diagnosed with SCC of her tongue (left side posterior anterior) and lymph node involvement on left side. She is a patient at MD Anderson and is in a trial (due to her age/race). The treatment is 3 rounds of chemo (9 total) - see if chemo works, then definitely surgery on August 19, in an effort to avoid radiation therapy. She had her 1st round of chemo in early June and went back end of June and doctors were amazed at how the lesion had shrunk. She's not been sick one day. Her doctors failed to diagnose her problem for 6 months. She is an x-ray tech and had an ultrasound done and was told by the tech that she had swollen lymph nodes. Doctor prescribed antibiotic with no results. She then had a CAT scan done - said he "didn't think it was cancer" - that was on April 13. On May 8, 2004, she diagnosed herself and went to the doc on May 12 and said, wow! You're right! We headed immediately to MD Anderson. How many in this "thread" re: oral cancer, are being treated at MD Anderson?

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

JudyAlexander: I hope you and your daughter are doing well. I was treated by several doctors in Virginia. Then I retired and moved back to Louisiana. I am now under the care of several doctors at Ochsner Clinic in New Orleans. I've heard that MD Anderson is an excellent cancer treatment center although I've had no personal experience with it.

emenker
Posts: 1
Joined: Aug 2004

Oh my gosh, after days of reading information on line, I've finally found something positive. My brother in law is being treated at MD Anderson for SCC. He is receiving his very first chemo treatment as I'm typing this message to you. He is 35 years old, and found out a few weeks ago that he has tongue cancer. His tumor is 4 cm, and two lymph nodes on the right side of his neck are infected. They want to do three rounds of chemo (9 total) before they do his surgery. I'm feeling so much better after reading the success your daughter had with her first round of chemo. How is she doing now? Is she still having surgery? I will pray for her too. This has been a horrible shock to my family, and we are praying for a miracle.

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