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#20292 04-27-2006 11:20 AM
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aimeeb Offline OP
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Hello all,

I'm new to the board and wanted to introduce myself and hopefully connect with some people in my situation--I know they're out there.

I was diagnosed with Stage 2 SCC on my tongue in late January and had a partial glossetomy along with several dozen lymph nodes that were removed on February 13th. My surgery actually went really well. I was blessed to have an excellent surgeon and to stay at a great hospital, The Huntsman Cancer Hospital. The biggest downside was that I had a trach as the doctor was worried about my throat swelling up. Not being able to talk was scary, but I had a great caregiver. My mom didn't leave during my whole stay, except for meals, showers, laundry etc. I was off pain medicine within days after surgery and the scar across my neck from removing the lymph nodes is hardly visible. My speech was somewhat impaired but has benefited from exercises from a speech pathologist. I only have a problem with s and z sounds now. My margins came back clear and the lymph nodes were clear as well. So the good news is that I


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.
#20293 04-27-2006 12:39 PM
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From Amy to Aimee. In January - I was diagnosed the same as you - age 29 Stage I or II (They didn't get an accurate measurement due to sectioning in pathology- it was borderline for size) partial glossectomy and bilateral neck dissection. I didn't have a trach - that seems to be the only difference. My margins - while very close on one side were negative - and so no radiation - I even went to a radiation oncologist who specializes in head and neck cancer to get his opinion and for the same reasons as you state - age, adverse effects ect....they don't want me to do radiation.

I am back to work and have been since mid February - I was only off work for 3 weeks for the surgery. I thought about it (the cancer and it coming back) constantly until I had a PET/CT scan on April 7th. Since that came back free and clear I haven't thought about it nearly as much. I had my scan done a little early - b/c I wanted to change jobs and didn't want to switch if there was indication that the cancer would return or had returned already. I was in the process of changing jobs when I was diagnosed - so that was a particularly hard blow for me. I had to stay where I didn't want to be and could do not a thing about it!

I've pretty much accepted that it could come back at some point and I will just deal with it if it does - but I've been able to move on with my life - and really move on - in just the last few weeks I'd say.

I'd say you'll be there soon - to where it doesn't completely comsume you.

I also live alone as not married and no children - so had way too much time to think about it. I found it helped just to go to my friend's house for the evening - even if all we did was vege in front of the TV.

Good luck and if you want to pm me - feel free.


SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
#20294 04-27-2006 12:40 PM
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Oh - and forgot to mention - I've never smoked in my life! You didn't mention this - so that was one thing that was particularly hard to get over - not knowing what caused it and therefore not being about to eliminate it from my life.


SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
#20295 04-27-2006 07:36 PM
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Hello Aimee,

Welcome to the Oral Cancr Foundation.

You have found the most informed group of ordinary people and professional people trying like hell to get the word out "Early Detection Saves Lifes".
It will take some time before you have this fear
about a recurrance leave you. The more and better scans you receive should help reduce your anxity. Many of us have traveled the path you are now on and survived, I see no reason why you can't to!!! Remember most of us have been on some type of anti-depressants so don't be timid about asking. I'll take all the help I can get.
Before long you will be the one answering questions and trying to uplift someone going thru a bad time. I hope so.
Go to the search engine at the top of the page and you can read for hours. The more knowlege you have the better you will feel. One thing i've
learned is doctors are human beings just like you and I. Don't be intimated by anyone in that ENT, Rad guy or the On'gist doctor, Most of the Nurses you will work with are great people. It's your life we are talking about.
I am not a doctor but a) You want to see doctors who see alot of what you have. The more opinions I believe the better.
b)This is a very ubforgiving diaease. Many with stage 1 & 2 have not survived while stages 3 & 4 have!!

You may want to think about throwing everything at this the first time. I don't want to be second guessing your decisions. Just talking from experience. When treatment is decided upon, go for it. Stay as busy as your body lets you, see friends, Try and stay as positive as you can. Get proper nutrition to maintain and heal. Take naps when needed. Eat orally as soon as you can. Start with soups, ice cream and graduate to what your throat can tolarate. It will be your main job over the next few months.

I hope your treatment goes well and you have a healthy long life, Please keep us posted as you start one rocky journey. There is light at the end of the tunnel. It gets brighter every week!!
Remember to measure your progress in weeks not days.

What is your real first name? Aime or Aimee?

All my Best, Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#20296 04-27-2006 10:22 PM
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Hi Aimee,
I have been in remission for almost 5 years and if you ask me if I still think of cancer, to be honest, I do but if I am worried about its coming back, I would say 'not quite'. The mouth dryness, a frustrating side effect of radiation, reminds me constantly that I am a cancer survivor.I am sure the word 'cancer' will stay with me for the rest of my life. I met my oncologist last month and he told me that my chance of recurrence is comparatively low now but I still need to wait for 2 more years before I can really be relaxed. What I can do now is to do my best not to let cancer have a second chance but if it returns, I am prepared to fight another battle.
Staging of the cancer and statistics provide a general reference to patients and doctors about the prognosis and how accurately does it apply to a particular patient depends on many variables. But so far, I still believe that the earlier the staging, the better the prognosis if the best available treatment is given. I never smoked or drank in my entire life and I learnt not to dwell on the 'why me' question because it could only create more mental suffering.

Karen


Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
#20297 04-27-2006 11:46 PM
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Hi Aimee,

Nice to meet you. I was 59 when diagnosed with Stage I scc on the lateral border of my tongue. Clear margins and no lymph node involvement. No trach needed. The surgeon, radiation oncologist and I decided that I would not have radiation or chemo. I have just passed the one year mark with a clear chest x-ray. I was back treating patients in 3 and a half weeks. With physical and speech therapy I can say that I am back to 100% function.

What I have learned from this experience and from being a member of this forum for over a year, is that there is no standard of care for treatment of oral cancer or for follow-up care. There are about a dozen people here that I'm aware of, that have not had radiation and/or chemo. The other thing is that most of us don't ever stop thinking about cancer. We just think of it a little less as time goes on. By being a member of this board, we are committed to helping others and by being here, we've chosen to keep this disease in front of us all the time.

If you care to "talk", please feel free to email me (or others) privately and include your phone number. Everyone here is available for you.

Good luck with your CT scan and please let us know how you make out.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
#20298 04-28-2006 01:41 AM
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Aimee,

Welcome to this forum -- I'm sorry you have to be here, especially at a fairly young age, but I think you'll find a lot of help and support here.

As I understand it, the treatment for Stage II tumors may call for radiation in some cases but not all. You asked for responses from people whose radiation went well. (By the way, I think it's a rare person who thinks radiation is "going well" while it's actually happening -- but I can respond based on relatively long-term results.)

I also had Stage II SCC of the tongue (at age 39), with surgery first to remove the tumor and many lymph nodes. The margins were clean, and there was no sign of lymph node involvement. My pathology report showed that the tumor was poorly differentiated, which I believe was a significant factor in my doctors' strong recommendation that I have radiation as soon as possible after surgery. My radiation treatments started about 5-6 weeks after the surgery. That was 17 years ago, when there was less that could be done to target the radiation to specific spots and to spare salivary glands. For me, the latter half of radiation and the weeks following were quite miserable, with many of the typical side effects that you can read about on this site. However, I was still able to work at least on a part-time basis.

Recovery from radiation can come in (slow) stages -- gradually getting back taste buds, swallowing ability, healing of the lining of your mouth, etc. Thankfully, I was able to get back to a point of eating just about anything I wanted and, while I was warned about possible dental problems, I still have all my original teeth. I got back to the point where I could maintain a normal work schedule, travel extensively, take on some volunteer work, and learn some new hobbies.

You mentioned that your tumor was "particularly invasive". I'm certainly not a doctor, so I can't say what is the right treatment for you, but based on what I have seen from others here(including fairly young patients), I would definitely press your medical team on the possible downside of delaying radiation in your case. You might also want to get a second opinion from another major cancer center.

Please feel free to come back here with any questions you may have. You will most likely find others who have been through what you are facing and want to help.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#20299 04-28-2006 03:42 AM
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Hello Aimee,

The anxiety you are experiencing is common and because of that it is perfectly normal. You will over time "outgrow" the feeling. The stress of all of this is part of an overall life experience. Many of us have decided that while it seems bad the overall experience is one of personal growth, spiritual (metaphysical) understanding, and a grand appreciation for people that come to our aid. In short, the overall experience is a positive one. You probably will be more introspective and generally more philosophical than you were before. That is a good thing too. The anxiety itself is a feeling that you can learn to control and if needed, or medicated successfully.

On the medical side I'd like to amend what Danny said because it (accidentally) implies that many stage one and two cancers aren't survived and that more stage 3 and 4 are survived. This is not true and I don't think Danny meant to suggest that. What is important for you to know is that because this is a serious illness you need to be certain of the best possible treatment. To that end, have a VERY frank discussion with your oncologist. He/She needs to be absolutely convincing that you have done all you need to do to beat this. I strongly suggest you ask for a second independent opinion from a Comprehensive Cancer Center, including re-examining the pathology. (You didn't mention where your care was received) Even if you have to travel a long ways at great expense, you are worth it! This will offer you two positive things: confidence in the care you have already received or perhaps additional treatments to be certain.

Radiation is not something I would wish on anyone needlessly. BUT you do not want this thing coming back!

P.S. I in no way am suggesting that you need more treatment! Please do not let my comments cause you more worry. I feel your oncologist is probably correct but it will not hurt to have other professional opinions back that up!


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.
#20300 04-28-2006 11:31 AM
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Hi Aimee,

Welcome. I am new to this site as well. I am 3 months out of Radiation & Chemo.

All I can tell you is what was said to me back in 2004. In 2004 I had stage 1 SCC on the right forward part of tounge. I had surgery for that only. With clear margins and everything. My Dr. said he got it all. He felt I did not need radiation at that time. He said that if cancer came back thats when they would use radiation.. He then explained that radiation could not be used in same place twice.

In 2005 cancer came back in right side neck by callor bone. Had surgery and had to have Radiation & Chemo at same time.

Aimee, all you can do is ask your DR. why so he can explain it to you. Maybe there was a reason. Just make sure you truly understand what he is saying.

take care..
DM


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
#20301 04-28-2006 05:56 PM
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As you can see from the posts here we have all treatment choices represented, and advocatres for each. Those of us with later stage caners didn't get a choice when it came to having radiation or not, we got it all. As to the mental part of it, Lance Armstrong said it clearly to me at a meeting several years ago. "You can be cancer free, but not free of your cancer". Approaching 7 years out from diagnosis, I still spend part of my time considring the possibilities that it will again be part of my life. I still get the "willies" the month before my annual scans. Visiting docs at MDACC for things not even related to me, but for the foundation, still gives me a quezy feeling in my stomach when I go in to the buildings that I spent so many painful days in. It is just part of being a survivor. The trick is to try and keep the negative or aprehensive thoughts in reasonable proportion to the positive things that are now in front of you.


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.
#20302 04-28-2006 07:07 PM
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Hello, Aimee. Let me give you my take on the worry part of this. For a stage 4 tumor with mets to nodes, I had surgery including a trach, chemo and rad. That was four years ago. I decided going in that the cancer was just another life challenge. I recovered and am having a fine time. I go to all follow up appts., lead a healthy lifestyle, and figure I will have the best time I can. That way if there is a recurrence, or even another unrelated cancer, I will not have wasted any of my time being worried. Bottom line, life is way too short to worry about what we cannot control or know. Take a deep breath and remember that there are many of us out here who have survived. Read Cathy's post about celebrating her 17th year since treatment.

If and when you need rad is the time to gather information. Treatment protocols change rapidly, so what you learn now may not be current if you need treatment at a later date. You can always come back here and get a wealth of information.

Finally, congratulations on your rapid recovery. I suspect when you have a good CT behind you, your anxiety will lessen greatly.

#20303 04-29-2006 12:56 AM
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Aimee,

I was stage II, had clean margins, but had some aggressive aspects to my tumor, and at first I was told I did not need radiation. I went for a second opinion at a leading CCC (partly at the urging of folks ehre) and they said I did need rad--and gave me some good arguments why. So I just want to second the suggestion that you get another opinion at a CCC--and have them look at your path slides again too--mainly because if that opinion also says you don't need radiation, I think you could rest a little easier (of course that's what I was hoping I'd hear from my second opinion and instead, I ended up having rad but I have no regrets that I took the most aggressive treatment after learning what I learned from that opinion).

As for my experience with radiation (I chose to be extra aggressive and have chemo too), it was not as good as some others here although that partly may be because I elected to get my treatment at a brand new facility, so I'm not going to get into that, except to say that at this point I really don't worry too much about recurrence. I know I did absolutely everything I could and if it happens, it happens. I don't want to waste any of the good time I have today worrying.....

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"
#20304 05-01-2006 05:47 AM
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aimeeb Offline OP
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Thanks all for your well wishes, advice, and input. I'm less anxious than I was last week (which is a very good thing), but I don't think I'll be really happy until I get good results from my upcoming appointment and CT scan.

My doctor has been conservative, scheduling me for this appointment only 2 months after my post-op. He is an ENT surgeon at the Huntsman Cancer Hospital. (Despite the fact that I was recovering from surgery, I was really impressed with the facility. There are only 50 private rooms there, so I had great support from the nurses, respiratory therapists, and staff. ) I will ask about the radiation when I go in again, but so far my doctor has been spot on about everything. I think the fear of reoccurrence (and then the radiation) has been the biggest factor for me.

I appreciate all of the reminders not to get or let my doctors get too complacent about my cancer. I realize the seriousness of it and am so grateful that it was caught as early as it was. I had a sore on my tongue that really hurt and went to an general MD, ENT, Dentist, and then finally an Oral Surgeon. The Oral Surgeon did the biopsy in his office and then had me into the oncologist the day after my positive results came back. If I could push my way through that, I can keep vigilant now.

Thanks again to all of you! --Aimee


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.
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