Hey,

I am just lookng for more information, for some insight .. something .. not sure .. but ..
..my mom has oral cancer, was recently confirmed. It's in stage 2, well, the doctor said out of 4 stages, its in stage 2.

The cancer is on my mom's tongue, and it hasn't spread, and she is going for an MRI in the coming week. From there we will kinda get an idea, and what to do next...,

question is what is next? if they surgically remove 30% of her tongue, what happens after that? Does she have to do radiation? or?

but .. i just want to know, what is next, what can i do to help my mom? is there somethign she sshould be doing? exercising more? eatting different? .. like .. my mom doesnt smoke ..she doesnt drink ...

... i jus dun understand it..

just some help .. would be nice,

thanks

H

Hi H,

Sorry to hear about your mom's cancer. I too, had a scc on my tongue and it was Stage I with no lymph node involvement and no metastasis. As you can see below, I had only surgery.

The first thing that everyone here will tell you is to try to have your mom treated at a comprehensive cancer center (CCC). If this is not possible, there are ways to have her situation evaluated at one, without actually going there. I'm not exactly sure how that works, but others here have done this. Second opinions never hurt.

Some of us here had surgery only and some had radiation and/or chemo, too. Some had radiation and chemo and no surgery. There is no set protocol for every situation.

Her treatment plan could differ from facility to facility and will also depend on whether there is lymph node involvement and/or metastisis. Just calling it Stage II without other details is not enough information.

Good luck to you and your mom and keep checking back here as often as you can. Keep posting additional information as you get it and you will have a wealth of information given to you. Also, you should use the search engine at the top of the forum page and the main search engine on the home page.

Jerry

Hi H, I had stage 2 tongue cancer and, based on my experience, I think it's pretty safe to say that they won't necessarily know what happens next until they do the surgery on your mom.

You didn't mention if she is having a neck dissection (where they remove lymph nodes from the neck) when she has the tongue surgery, but I would assume she is, since about 30% of the time, cancer can spread to the lymph nodes and it won't show up on any of the imaging they do beforehand (such as CT scans).

So that is one thing you may want to be prepared for is that they could find the cancer has spread after all after they do the surgery. If that is the case, she will almost definitely have radiation recommended for her case, and possibly even radiation and chemo. If the nodes that are removed are clean, she may possibly escape the ordeal of radiation, although there are still some other risk factors that could cause them to recommend radaition anyway. In my case, as you can see from my "signature" below I had both radiation and chemo because, although all the nodes they removed were clean, I had some other features of the tumor that made it aggressive. After her surgery, if not before, you may want to get a second opinion, whether or not they recommend follow-up radiation because what should be done for stage 2 cases seems to sometimes be a bit of a gray area. If you can, if you are not at a CCC, you should consider going there for your second opinion.

There are also lots of people here willing to answer any questions you may have--though we are no substitute for knowledgable doctors! And the search engine will also help you find lots of information.

Nelie

Dear H. Try not to panic! Your role is most likely going to be the level head that keeps a handle on things. Not easy to do-BUT DO-ABLE! Read the posts here on "How to get through it". It wil help you start to formulate a plan. Keep asking questiona here and when she sees the Docs.I hope you go with her to appointments-that way you will hear 1st hand what is being talked about. You gotta stay strong now. Amy

Stage II tongue cancer would probably treated with "definitive" radiation (prefered) maybe with chemo

see: http://www.oralcancerfoundation.org/treatment/guidelines.htm

Well, I know it is in stage two, the growth on the tongue isn't 2 cm i don't think and there are no signs of spreading to the neck/lumps in the neck..but.. the MRI will tell us more information,...

..doctor said something about removing lymph nodes from the neck to ensure it doesn't spread..

What seems to work better after surgery? Chemo? or Radiation? or Both?

Also I have heard cases of people curing their cancer through acupuncture and herbal medicines?

thanks
H

Forget completely about acupunture and herbal medicines. The time you waste trying them will cause the cancer to become a far more advanced stage and potentially fatal.

If you study the link I sent you ealier, it lists 3 different potential paths to take to treat this. You have door #1 through #3 in conjunction with the best medical advice you can get. It sounds to me like the entire diagnosis isn't in yet. You will need an MRI, possibly a CT as well and a PET/CT to determine whether or not there is any metastesis. Without all of the information the staging sounds like a guestimate to me. Occasionally some persons having the neck disection will have nodes test positive - that will bump the staging up 1.

The tongue, being tough and fibrous tissue, and it's location make it more difficult to treat. In the US typically an aggresive treatment plan is usually recommended.

If she does the radiation and chemo route they will be radiating some of the nodes as well.

These are all tough choices to makes. Take a deep breath, take good notes, ask a lot questions about the risks and benefits of each possible treatment plan/option and ask for second opinions. Seek out the best cancer docs in Canada and/or see if possibly the medical files can be reviewed in the US at a CCC like Memorial Sloan Kettering. It is critical that the second opinion be done prior to the start of treatment as the CCC's typically won't want to become involved after treatment is started.

Hello H,

Sorry to hear about your mom's tongue cancer. I'm assuming it's a squamous cell carcinoma (SCC). First thing my dentist did was to send me to an oral surgeon for a biopsy. It was a quick and relatively painless procedure. It came back "Moderately differentiated SCC". Along with staging its important to know if its poorly, moderately or well differentiated. So its a good idea to get a biopsy.

I had about the same type of SCC on my right side tongue in Sep 2003. It was surgically removed in early November 2003 with about 25-30% of tongue removed (partial glossectomy). After 4 days in hospital, I could eat and speak very well and got a clean bill on Dec. 1, 2003 with no lymph node involvement. No radiation was recomended at the time.

Around Christmas 2003, I noticed a lesion under the front of my tongue. Being the holidays, I didn't get a biop[sy until Jan. 12, 2004. By the time I underwent surgery Feb. 3, 2004, the cancer had grown aggresssively to the point where I was in surgery for 12 hours. I had a subtotal glossectomy ( nearly complete removal of tongue with a forearm radial free flap) and work on the pharynx. They had to break my jaw to get it all. Have been on a PEG tube ever since. Speech is very poor even with a prosthesis. This is because the tongue flap is immobile. Tough on quality of life. Thabk God I'm old enough to retire (70).

I'm telling you this not to frighten but as a cautionary tale. If I had had some radiation in Dec 2003 would I have not had such a severe recurrence. Will never know. Seek as much advice from a comprehensive Cancer facility as you can with stress on what stepos to take to mitigate recurrence.

God Bless you and your mom in this journey.

Jim haucke

Hey Jim,

Thanks for the kind words, i hope your doing well, .. im trying to gather as much information as i can .. and any information/experience .. is valuable...

thanks again jim!

H

Yeah, I looked at that link again, Gary. To see if it has changed again (it has already changed once for stage II since last year when I was getting recommendations). It looks like if a neck dissection is done and the nodes all come out clean there and there are no other adverse features such as perineural invasion, or positive margins then they don't recommend radiation anymore (I think the old version used to say it was optional). Its only if there are adverse features or there's a node that shows as positive after surgery that they recommend radiation and only if there are positive margins and positive nodes they'd recommend both radiation and chemo. So Stage II really is door number one, two or three before surgery--it's the results of surgery and the pathology on the lymph nodes they remove that decides what happens next!

Also, I'm going to contradict Gary just a little because in this case I think it is very possible to get a CCC to give a second opinion after surgery (this is the way I did it) since the results of the surgery are what makes the difference about what happens next, so a second opinion doesn't have to be given before surgical treatment.

Anyway, H, you've been given good advice by everyone so far in that the best way you can be of support is to try to go to the Doctor's apppointments with your mother, if you can, and ask questions and take notes. Encourage her to get a second opinion. And acupuncture and herbal medicines may be things you can use to help her through recovering from her treatment, they are in NO way effective treatments in themselves for this disease.

Nelie

Just thought I'd add, and this is kind of an aside, that there is still a gray area for Stage 2s in that NCCN treatment protocol and it's the area I fell in where there are no positive lymph nodes after surgery but there are still some adverse features of the tumor(esp. perineural invasion). It only says radiation should occur when there's one positive lymph node and adverse features. Does that mean by that protocol even radiation wasn't recommended? I think this is why second opinions are so critical when you're stage 2.

Nelie

Contradict me if you wish but we but seen others who were rejected for further review after treatment is started. There are potential liability issues here that the doctors don't want to get into. Prior to starting a new treatment segment might be a different issue (as was in your case).

They update the NCCN Oncology Practice Guidelines at least annually. There is also summary of changes located throughout.

When I research this I always use the latest information available.

DISCLAIMER: Bear in mind that neither Nelie or I are doctors, we are only advocating that there are numerous possibilities and that everyones cancer is somewhat unique so there may be variations in the treatment protcol. We merely try to equip the patient and/or caregivers/advocates with sufficient knowledge to ask intelligent questions that allow them to make choices that will have the highest degree of confidence that they will have access to the best treatment plans available with all of the risks and benefits weighed out.

Gary you said: "Prior to starting a new treatment segment might be a different issue (as was in your case)."

right. that's what I'm saying too--I don't think we are actually disagreeing. The thing is, in the case of stage 2 tongue cancer where a partial glossectomy and neck dissection would be done first, no one can say for sure what will follow the surgery until the results of the surgery are in so getting a second opinion ahead of surgery is less informative than after the surgery and pathology results are in.

Nelie

H,

I would like to weigh in again on your situation.

First of all acupuncture and herbals don't cure cancer!

As far as radiation and chemo, I can only tell you what was my experience. This in no way means that this is what should be done, only that again I will say there are many ways to treat this issue. This is not to confuse you, but to give you insight into what you "might" be told.

My surgeon is the chief of head and neck surgery at a ccc. I went to him after having had a biopsy in my office and having an MRI which was ordered by my oral surgeon. The results of both were brought to him. He said to me that his protocol is to remove the lymph nodes on the side of the tumor, without even seeing an MRI. His reasoning is that MRI's can have false negatives and the only way to know is through biopsy. I went with this as to me, there was no argument against this reasoning. I was also seen by a radiation oncologist, who agreed with the treatment plan and added that if the nodes were negative, he did not recommend radiation.

There are many members here that will disagree with this protocol and most base this upon their own experinces. What it comes down to is that you have to get as much information as possible, including other opinions and do what you and your mom feel most comfortable with and feel is the right thing for her.

Everyone second guesses their decision I'm sure and I am no exception to this. Well, if I die of old age or some other illness, I made the right choice. If I get a recurrence, then I guess I didn't. However, who is to say you can't get a recurrence after radiation and chemo?

This is tough road to follow and we are all human and are unfortunately faced with life threatening decisions.

Good luck and please keep us posted.

Jerry

Hey,

Okay, maybe "cure" isn't the right word, but i only mentioned acupuncture and herbals because ive found some suvivor stories that acupuncture and herbal meds assisted with the pain and stop recurrence .. ..

.. i wasn't saying it is a substitute for rad, chemo or surgery....

but i do have a question, .. its probably dumb, but when my mom gets her MRI done, she will have surgery, and than radiation and chemo probably,.. how long does the entire process take? I have read so many cases and timelines aren't always specified .. i know each case is different, .. but i just wanted a general idea

Thanks for all the help .. never experienced anything like this before, ..you read about it, you hear stories, but you really dont understand until it touches your life ..

Thanks again so much,
H

H,

Timeline:

With all testing expedited, it was about almost 2 months from initial Dx to my first day on the table.

If your mother is having teeth pulled that will delay things a week or so.

If your mother is having surgery, like a radical or modified neck disection, then it will be about three weeks before they start radiation.

Radiation can be from about 33 to 37 calendar days (not counting the weekends - or machine breakdowns) depending on the specific treatment plan. Figure a little shy of 2 months.

It'll be about 1-2 months before the radiation effects even start to get better.

After that's all over figure about one month of recovery for every week of radiation (from the end of radiation).

It'll take about a year to 1 1/2 years to have blood chemistry back to low normal limits.

I was pretty beat up and totally disabled for almost 2 years. I was a healthy 55 year old going into this.

About herbs, I wouldn't waste my money on a "cure", or whatever, based on testimonial evidence. There is no science to support that this is safe and efficacious and, in fact, may negatively interact with her meds. Even many acupuncturists have admitted that it is not very effective for head & neck issues, particularly Zerostomia (dry mouth).

Here is a link to Quackwatch concerning alternative cancer cures:

http://www.quackwatch.org/00AboutQuackwatch/altseek.html

It is shameful what some people will do to scam cancer patients. Some of these are big businesses like GNC.

Hopefully you will never experience anything like this again. Your mother is fortunate that they caught this in an early stage. Many of us were not Dx'd until we were quite advanced. Tell us more about they discovered it.

Thanks everyone, i;ll keep everyone posted ..