To Radiate Or Not To Radiate That Is The Question

Skiffin16

donna b said:

This is my first time on this

This is my first time on this sight. My case is a bit different from those I've read, although similar enough for someone out there to help, I'm sure. In january, I had surgery for stage 1 tongue cancer with perineural invasion. No lymph nodes involved. One-helf of my tongue was reconstructed and I had a neck resection. After surgery my surgeon said I was "cancer free"" and said no further treatment would be necessary. Yeah! Now, eight weeks later, he has changed his mind. He missed reading in the biopsy report about the perineural invasion, which means recommending radiation. (the nerve issue was in only the biopsy, not the after surgery report, which showed that everything was gone). Anyway, after two visits to a radiologist, I'm left with the decision whether to radiate or not. I'm "borderline" and it's my decision. "Studies" recommend the radiation just to be sure. After reading all the side effects of the rad/chemo, I'm scared and confused. Anyone out there have my type of cancer? Anyone NOT have the treatment? Thanks.

Started a new post for you Donna B....

Welcome to the club...

John

Deeocala

Tongue Invasive Squamous Cell Carcinoma

2013-07-27 I was diagnosed with tongue carcinoma in May of this year, 2013. On July 3rd I had a partial Glossectomy and radical neck dissection. No lymp node involvement. Was told by doctor she  got clear margins and no lymph node involvment on the pathology report. Was told this woiuld be all that was needed. When I went for a follow up post surgery, doctor stated that everything was clear. Before I was ready to leave, she then told me those famous words "But" I need to confer with the board of physicians and I will call you regarding radiation treatments. I got the call a week later and doctor stated that the board decided I should have the radiation. Through my middle and later years I took care of several cancer patients, some with chemo/radiation and some without.

The question I have is are there any persons out there who survived 5 years or more, with or without treatments, and without re-occurances? If there is anyone who has survived more than 5 years, can you describe the side affects and your quality of life?

phrannie51

Deeocala said:

Tongue Invasive Squamous Cell Carcinoma

2013-07-27 I was diagnosed with tongue carcinoma in May of this year, 2013. On July 3rd I had a partial Glossectomy and radical neck dissection. No lymp node involvement. Was told by doctor she  got clear margins and no lymph node involvment on the pathology report. Was told this woiuld be all that was needed. When I went for a follow up post surgery, doctor stated that everything was clear. Before I was ready to leave, she then told me those famous words "But" I need to confer with the board of physicians and I will call you regarding radiation treatments. I got the call a week later and doctor stated that the board decided I should have the radiation. Through my middle and later years I took care of several cancer patients, some with chemo/radiation and some without.

The question I have is are there any persons out there who survived 5 years or more, with or without treatments, and without re-occurances? If there is anyone who has survived more than 5 years, can you describe the side affects and your quality of life?

Deeocala....

This is a pretty old thread, so could be missed by those who can answer YES YES YES to your question about survival after 5 years....I'm only a year out, so can't answer that one.

Please start a new subject title (to the left at the top of the page under HEAD AND NECK CANCER it says "Post New Forum Topic"....do that and tell your story so people will for sure answer.

p

TracyLynn72

^^

 

What Phrannie said

KTeacher

donna b said:

This is my first time on this

This is my first time on this sight. My case is a bit different from those I've read, although similar enough for someone out there to help, I'm sure. In january, I had surgery for stage 1 tongue cancer with perineural invasion. No lymph nodes involved. One-helf of my tongue was reconstructed and I had a neck resection. After surgery my surgeon said I was "cancer free"" and said no further treatment would be necessary. Yeah! Now, eight weeks later, he has changed his mind. He missed reading in the biopsy report about the perineural invasion, which means recommending radiation. (the nerve issue was in only the biopsy, not the after surgery report, which showed that everything was gone). Anyway, after two visits to a radiologist, I'm left with the decision whether to radiate or not. I'm "borderline" and it's my decision. "Studies" recommend the radiation just to be sure. After reading all the side effects of the rad/chemo, I'm scared and confused. Anyone out there have my type of cancer? Anyone NOT have the treatment? Thanks.

Perineural

nothing to play with.  I have had good care but cancer traveling on the nerves is unpredictable.  My cancer did not read the rules, my recurrances shouldn't be, but they did.  My first was on my lip.  1 inch of upper lip removed, 50 stitches, followed by radiation.  1 year later a lymph node on the opposite side on my neck, not supposed to happen.  Neck dissection followed by more radiation.  Perineural--'c' cells traveled up my cheek and into orbital nerve, eye removed followed by chemo and radiation.  I had clean margins the first time.  Do everything possible to rid your body of cancer.  Tough fight but I am here to see grandchildren grow up, nothing better.

debbiejeanne

Deeocala said:

Tongue Invasive Squamous Cell Carcinoma

2013-07-27 I was diagnosed with tongue carcinoma in May of this year, 2013. On July 3rd I had a partial Glossectomy and radical neck dissection. No lymp node involvement. Was told by doctor she  got clear margins and no lymph node involvment on the pathology report. Was told this woiuld be all that was needed. When I went for a follow up post surgery, doctor stated that everything was clear. Before I was ready to leave, she then told me those famous words "But" I need to confer with the board of physicians and I will call you regarding radiation treatments. I got the call a week later and doctor stated that the board decided I should have the radiation. Through my middle and later years I took care of several cancer patients, some with chemo/radiation and some without.

The question I have is are there any persons out there who survived 5 years or more, with or without treatments, and without re-occurances? If there is anyone who has survived more than 5 years, can you describe the side affects and your quality of life?

dee, i don't know about ur

dee, i don't know about ur type of cancer but i wanted to tell u good luck and i will b wishing u the very best.

p.s., what is a Glossectomy?

dj

GavinP

donna b said:

This is my first time on this

This is my first time on this sight. My case is a bit different from those I've read, although similar enough for someone out there to help, I'm sure. In january, I had surgery for stage 1 tongue cancer with perineural invasion. No lymph nodes involved. One-helf of my tongue was reconstructed and I had a neck resection. After surgery my surgeon said I was "cancer free"" and said no further treatment would be necessary. Yeah! Now, eight weeks later, he has changed his mind. He missed reading in the biopsy report about the perineural invasion, which means recommending radiation. (the nerve issue was in only the biopsy, not the after surgery report, which showed that everything was gone). Anyway, after two visits to a radiologist, I'm left with the decision whether to radiate or not. I'm "borderline" and it's my decision. "Studies" recommend the radiation just to be sure. After reading all the side effects of the rad/chemo, I'm scared and confused. Anyone out there have my type of cancer? Anyone NOT have the treatment? Thanks.

As your borderline...

Hi Donna,

One idea I have, as you say your borderline between having radiotheraapy and not having having it, is that you may be a candidate for low dose Brachytherapy?

This is basically internal radiation where they put some radiation into a targeted area (in your case your tongue) and leave it there for a period of time.

It's not used all that much these days I don't think, because external beam radiation is so targeted and offers much better outcomes to internal radiation, but head and neck is one area it is still used for at times because external beam radiation can be so damaging to the oral cavity.

Another reason it may be used for oral cancer is because when you have external beam radiation once, you tend not to be able to have it again (because the first times does so much damage to your head and neck) so if you have the earliest stages on oral/tongue cancer (carinoma-in-situ) they will sometimes use Brachytherapy and save external beam radiation as a back-up option should more treatment be needed later on.

Now, it may not be advisable for you as you say the cancer had gone invasive (all-be-it the earliest stages) as far as I'm aware Brahytherapy tends to be used when the cancer is non invasive and basically is just sitting on the top of the tongue, waiting to start digging itself into the tissue. However, it could at least be worth asking about?

Bottom line though, you must be guided by your doctor.

Ask he/she what they recommend and then go with it.

Ultimately your well-being and care is their main priority and they deal with this rotten cancer every day, so they know whats what.

Good luck. Let us know how you go.

GavinP

debbiejeanne said:

dee, i don't know about ur

dee, i don't know about ur type of cancer but i wanted to tell u good luck and i will b wishing u the very best.

p.s., what is a Glossectomy?

dj

A Glossectomy...

Is the partial or total removal of the tongue.

debbiejeanne

GavinP said:

A Glossectomy...

Is the partial or total removal of the tongue.

thanks, gavin.
dj

thanks, gavin.

dj

mls351w

TracyLynn72 said:

^^

 

What Phrannie said

this site

Welcome to this site. It is the best.

fishmanpa

Deeocala said:

Tongue Invasive Squamous Cell Carcinoma

2013-07-27 I was diagnosed with tongue carcinoma in May of this year, 2013. On July 3rd I had a partial Glossectomy and radical neck dissection. No lymp node involvement. Was told by doctor she  got clear margins and no lymph node involvment on the pathology report. Was told this woiuld be all that was needed. When I went for a follow up post surgery, doctor stated that everything was clear. Before I was ready to leave, she then told me those famous words "But" I need to confer with the board of physicians and I will call you regarding radiation treatments. I got the call a week later and doctor stated that the board decided I should have the radiation. Through my middle and later years I took care of several cancer patients, some with chemo/radiation and some without.

The question I have is are there any persons out there who survived 5 years or more, with or without treatments, and without re-occurances? If there is anyone who has survived more than 5 years, can you describe the side affects and your quality of life?

New Thread

Hi Dee,

Welcome to the site no one really wants to join.  As P said...Your question will receive much more attention if you start a new thread. Older threads tend to get lost. 

As to your question... a 2nd opinion at a CCC is advisable. Radiation and chemo are common treatments in addition to surgery. remember, all it takes is one stray cancer cell to start it all over again. Better to get it now. 

Side effcts are varied and many. Check out the Superthreat at the top of the board. "Everyone's different" is a mantra you'll hear over and over.

Positive thoughts and prayers

"T"

came so sudden

Cherokeegirl said:

Sounds like your Sister in
Sounds like your Sister in law don't like you very much. I would do what your Doc says. I think he would know more.
On the serious side.......Doctors DO care about the quality of life........what right does she have to say such a thing? My Husbands Doctors are still seeing him even though the cancer is gone. My husbands Doctors told him about sesame seed oil to help with the taste buds and you know what it was only a matter of a few days and he was tasting things again. No not 100% of the taste buds returned but he does enjoy most of what he eats.
This is YOUR life not her's,not mine,not the Doctors YOURS. Remember they are doing it to HELP you not HURT you.

Am in same situation, why the

Am in same situation, why the radiation rush, read up on all the awful side effects, some also increase cancer returning worse than ever.  Have had friends who went thru hell, lost teeth,  , needed feeding tubes , jaw pain was pure hell, also tongue problems, one lost all saliva, hard to even drink water, why not told all this so can make own decisions,  and why not told before even surgery?    Listen to sister in law, family cares, docs push meds and more awful treatments, find alternative safe means for life quality not exist as a shell.   Chemo and radiation also cause more bad than good for too many

 Best of luck, wish same for me, at my age too am now   79 !

 

came so sudden

tjuhlin said:

Thank You For Your Responses
Thank you all for you responses. I still not sure what to do. After doing research on the Internet this is one of the few sites that have cancer survivor's and family encouraging others to do radiation.

Please do not fault my sister in law, she was sharing her observations of what goes on in the operating room and in a hospital setting. She and my brother felt that I should know the negative effects of radiation that was never discussed in "depth" by my surgeon, staff and the radiologist.

I do have several questions about radiation treatments if someone could help out on that I would be grateful.

1. I have a hard time swallowing now does that mean I will loose my ability to swallow sooner?

2. Can I personally drive to each and everyone of my radiation treatment (30 mile RT)?

3. Do I or would I need a full time caregiver during treatments?

4. When should I begin physical therapy (several neck muscles were cut in the removal of my tumor) before, after or during radiation treatments?

I know these are generalized questions and that the answers depends on the individual who is receiving radiation but I do have to ask so I can get a general consus.

Thanks Again

Terry

told need teeth pulled first

told need teeth pulled first,due to risk for bad infections so then means tube to eat for life!    someone knew had husband divorce her, could not deal with seeing wife in such state from so called good treatment, lyinh in bed months, with depends as not able to go to bath to even pee, was her life, no thanks, prefer 4-5 yrs of lving than few more exisiting seen and heard too much bad and worse from those know and radiation/chemo ended some lives too, your SIL cares ofr you is why is honest.    GOD why dont doctors tell us of all the better alernatives than burning our skin, losing teeth, and more bad chemicals into our bodies, ask your that question ?

CivilMatt

came so sudden said:

told need teeth pulled first

told need teeth pulled first,due to risk for bad infections so then means tube to eat for life!    someone knew had husband divorce her, could not deal with seeing wife in such state from so called good treatment, lyinh in bed months, with depends as not able to go to bath to even pee, was her life, no thanks, prefer 4-5 yrs of lving than few more exisiting seen and heard too much bad and worse from those know and radiation/chemo ended some lives too, your SIL cares ofr you is why is honest.    GOD why dont doctors tell us of all the better alernatives than burning our skin, losing teeth, and more bad chemicals into our bodies, ask your that question ?

let's talk frank

c.s.s.

You are incorrect about the final recovered person many of us are.  And our path here was not as you described.

Now, I do know some where the course was dictated by the cancer and it was not pretty (as you described)

rush1958

came so sudden said:

told need teeth pulled first

told need teeth pulled first,due to risk for bad infections so then means tube to eat for life!    someone knew had husband divorce her, could not deal with seeing wife in such state from so called good treatment, lyinh in bed months, with depends as not able to go to bath to even pee, was her life, no thanks, prefer 4-5 yrs of lving than few more exisiting seen and heard too much bad and worse from those know and radiation/chemo ended some lives too, your SIL cares ofr you is why is honest.    GOD why dont doctors tell us of all the better alernatives than burning our skin, losing teeth, and more bad chemicals into our bodies, ask your that question ?

Radiation

I concur with CivilMatt.

I had 33 rounds of radiation, 3 rounds of Cisplatin and surgery for BOT cancer. I won the trifecta.

It is now eight years down the road. I still have my teeth. I swallow just fine, My taste is OK. The surgery scar can only be seen if I point it out and no one would ever know that anything ever happened to me unless i told them.

If I had it to do all over again, I'd follow the same path. The radiation was the easiest part of the whole ordeal. Everyone is different, but my radiation treatment only produced a sunburn type effect on my neck. I never had any problems swallowing or a sore throat. 

I see the dentist one extra visit a year now. That has been about the only change from presurgery.

Rush

OKCnative

came so sudden said:

told need teeth pulled first

told need teeth pulled first,due to risk for bad infections so then means tube to eat for life!    someone knew had husband divorce her, could not deal with seeing wife in such state from so called good treatment, lyinh in bed months, with depends as not able to go to bath to even pee, was her life, no thanks, prefer 4-5 yrs of lving than few more exisiting seen and heard too much bad and worse from those know and radiation/chemo ended some lives too, your SIL cares ofr you is why is honest.    GOD why dont doctors tell us of all the better alernatives than burning our skin, losing teeth, and more bad chemicals into our bodies, ask your that question ?

I too disagree with all the

I too disagree with all the doom and gloom. Sure, head and neck cancers can all be different and we all attack them at different stages. But to use a broadbrush to desribe it all as a hell nobody should go through is totally without merit.

I'm 3 months post treatment for SCC BOT Stage 3 with several nodes involved. I didn't use a chemo port or a feeding tube. I had no teeth removed and never even threw-up during treatment. I also decided against neck dissection. I went to work most days and only 3 months out I eat whatever I want and my weight is back to normal. I wouldn't say treatment is a piece of cake, simply because it got through it fairly well, but I also wouldn't call it a death sentence. I was sick, I was miserable, I have no strength, I developed neuropathy, I lost a lot of weight, I couldn't talk for a week solid and the thought of swallowing my liquid diet brought tears to my eyes because of the pain.

Was it all worth it? 100%. Had I not done radiation and chemo it would have only gotten worse - possibly disfiguring worse or even death.