Hello,
I'm writing to introduce myself. I've joined this site on behalf of my husband, and for support and information for myself. My husband (41) has tongue cancer and is still in the decision stages of how to best move forward with treatment, surgery vs radiation. His doctor is recommending surgery and thinks radiation is not yet necessary. We have questions about side effects with both, but when I looked on the treatment board, I felt like maybe other people are perhaps dealing with more advanced cases of cancer. His cancer has not spread to neck nodes yet, fortunately. Can anyone advise on where on the board to get info re side effects of tongue resection (speech loss, PT, etc) vs radiation. The radiation sounds more definitive in it's effectiveness but we don't want to do it if it's unnecessary.

Thanks for having this board, and to anyone who offers info or advice.

louise

Hi Louise, and welcome! Sorry you had to join our group.

There is a whole bunch of information accessible from the main pages. Hit the main URL (http://www.oralcancerfoundation.org/) and click around on the understanding tab and it's subgroups. Some of the other tabs also have relevant information. It is sometimes tough to figure out what is applicable to your own particular case, because there is a large amount of information there that addresses different types of oral cancer and different treatments.

I had a partial glossectomy, with the forearm flap taken from my left wrist. They filled in the hole on my wrist with a skin graft taken from my left thigh. They also close to perform a neck dissection, but thankfully none of the nodes were cancerous.

While the surgeon was 80% certain that they got everything out during surgery, they were recommending radiation treatments. I elected to trust their professional opinions, and had my radiation about six weeks after the surgery. In my case, I had a relatively easy time with the radiation treatments, compared to what I have read that others have gone through. I was still physically active and even went on a fairly strenuous hike about an hour after my second to last zap session. Yes, I had a nice sunburn and I was again on a mostly liquid diet towards the end, but I got through it. As far as longer term side effects, so far all I've really noticed is some movement with my teeth, but I haven't lost any of them so far. Everything else seems more or less normal (other than the scar on my wrist & some minor speech and tongue movement difficulties, but those are related to the surgery, not the rads).

There are others on this board who had a recurrence after skipping radiation the first time they were treated. Given what I was told, I'd be kicking myself if I decided 80% was good enough odds and skipped the supplemental radiation. But if it wasn't actually required, I certainly wouldn't want to go through it all!

Perhaps your husband's tumor is small enough not to require a full-on glossectomy and maybe radiation is indeed not warranted in his case. You might want to get a second opinion. It does not appear that you are lucky enough to have one of those fancy "Comprehensive Cancer Centers" right in your backyard, but if you're a nurse, perhaps you have a good feel for whether you can rely on the diagnosis and information you've been given.

Hello Louise, I am truly sorry that you have a need for this site. However, it is a fabulous place for information and advice.
I would recommend that you get a second opinion. Preferably from a Comprehensive Cancer Center. Research has proven that a CCC gets better outcomes for their patients. You don't want to be regretting anything further down the track. A CCC sees hundreds of patients with Oral cancer. A local centre might see a couple a year, so you can't compare the experience . Also a CCC has your case discussed by a Tumour Board, which then recommends a treatment plan. The tumour Board consists of surgeons, radiologists, chemo docs, dentists, physios etc. As against a local Center where the surgeon will push surgery, the radiologist will push for radiotherapy etc.
Thinking of you both,
Tammy

I thank you both for your above replies. We will be researching further and are in contact with two other docs out of state, one in San Francisco and one at the Cleveland Clinic. Perhaps we should consider treatment at a comprehensive cancer center, as you mentioned Tammy.
I am a nurse, but I'm a labor and delivery nurse, and this whole thing is far out of my area (I hesitated to even include my occupation on my profile bc it certainly does not apply here, as far as I'm concerned)
Vanpaddler, I'm glad your treatment was successful and that you were left with minimal side effects. I understand radiotherapy varies a lot depending on how it's administered and by whom. This only complicates the issue further for us, and we're still trying to understand it all.
Again, thanks to you both. I'll be reading more on here, and perhaps posting from time to time.

louise

Hi there.. As someone above said. Get a second opinion from a CCC if you are not at one.

Tongue cancer can be tricky.
The first line of defense is actually surgery. Then followed up with radiation and chemo if needed. Ideally the surgery will involved not only removal of the tumor in the tongue (and surrounding tissues) but also a selective neck dissection.

If there is no nodal involvement then he may be okay to walk away post surgery (a clear CT scan is not enough to guarantee no nodes are involved as small cells sometimes hide in the nodes but do not show on a scan until they are a certain size. The best way to determine nodal involvement is through a biopsy after a selective or partial neck dissection. Even what appears to be a small lesion can easily move into the nodes depending on how aggressive it is. If they do opt only to do the tongue surgery then he needs to keep a very very close eye on his neck post treatment because often a node will then pop up requiring a second surgery and possibly rads and chemo.

Rads and chemo as a first line of defense for tongue surgery, (oral tongue not base of tongue) is not as effective. Rads and chemo is usually only used as a first line of defense for tonsil, base of tongue, and throat involved cancers.

hugs and welcome ... sorry you have to be here.

Louise,

Welcome to OCF - really sorry you need our help!

As others have said, treatment of oral cancer/tongue can be tricky and it is best to be see at major cancer center where they have treated lots of OC patients. I learned this the hard way having my first 2 surgeries locally before going to Johns Hopkins in Baltimore (one of the best hospitals for H&N cancer in the US).

Radiation therapy is brutal and causes many of us long-term QOL issues. If the tumor is small and has not spread to any lymph nodes, recommended treatment is often surgery alone.

I had surgery at 2 hospitals before having 2 more at Johns Hopkins. One thing that was not done at the first 2 local hospitals was doing "frozen sections" during the surgery to ensure that the cancer is removed with clean margins. Frozen sections is a type of quick biopsy done during surgery to determine if the tissue is malignant or healthy. It is usually used along with a "blue dye" that highlights suspect tissues. You should be able to find better information on this on the OCF main pages.

My tumor was on the right lateral side of the tongue, and only a small part of the tongue was removed. I ended up with RT anyway (long story, and probably unnecessary) nearly a year later. Then 5 years later I had a recurrence (same area) - two more surgeries, and a year later dysplasia (again same area). So as this point I have about 1/3 of the right side of my oral tongue removed.

My speech is pretty normal, but if I talk a lot I have some issues. Eating (moving food around in the mouth) is an issue, but nothing too bad. Most of the eating and swallowing issues I had and still have are because of RT.

Everyone's experience will be different due to the size and location of the tumor, and how much of the tongue needs to be removed.

Besides the main pages of the OCF website, this forum is searchable (use the box in the upper right). Most of the posters include a "signature" which will give you an idea of their diagnosis and treatment, and you can click on their username and read their posts if you want to find out more information of what they went through. I used the search function a lot to find out the answers to many of the questions I had.

Wishing the best for you and your husband!

Thanks to you both, Susan and Cheryl. We are now in the process of contacting (and likely going to one of either) Univ. of Washington Med Center in Seattle, or MD Anderson in Houston, in hopes of receiving more assuredly top-quality care.

I am hopeful that it is still recommended that surgery is all that is needed. I'm a little unclear as to when exactly they recommend a neck dissection (so far, his doc here in Boise has NOT). Radiation seemed reassuring as a possibility because of what seems like the better assurance of no mets. But the more we read about radiation, the more we want to avoid it if possible. As I read somewhere, it sure is difficult deciding between various choices, none of which you actually want at all.

Susan, your info about the frozen sections is helpful. We will inquire about that for sure. Did you have speech therapy after your surgery? And if so, how long did it take you to (fairly well) recover any speech loss you had?

I didn't mention in my original post, my husband was originally diagnosed in 2006 when he was living in Germany. He had surgery there, and then just follow up with biopsies and some kind of freezing/superficial treatment I believe (unclear to me bc this was when we just met) in the years after, until this recent reoccurrence. The fact that it is a recurrence is what particularly scares me. I understand the initial treatment is perhaps the most important of all, and I wonder if they should have done more at that time.

In any case, thanks again for all the above posts and information. I do appreciate everyone's time taken for such thoughtful responses.

Best,
Louise

Louise,

MD Anderson and Johns Hopkins are probably the two best hospitals for H&N cancer in the USA.

Sorry to hear this is a recurrence. Did he have radiation or chemo the first time? Does he have any records from his treatment in Germany? If not, is he able to get records (biopsy, doctor/surgical reports, etc.)? Over the years I was to 4 different hospitals/doctors and most requested prior medical records. Is the current location of the tumor the same as in 2006?

The National Comprehensive Cancer Network has a lengthy & detailed document on H&N cancer treatment guidelines. This shows recommended treatment by cancer location and stage. If you do a search from the OCF main pages on NCCN guidelines, it should bring up this document.

If you go to 3 different doctors for an opinion, you will likely get three different treatment plans. The lymph nodes are usually the first place OC will spread after the primary, therefor a neck dissection is often recommended even in stage1 cases. (I didn't have one, but had RT to the neck instead.)

I didn't have speech therapy after my OC treatment, but I did have it as a child and did those same exercises after surgery and radiation which helped. This is something you should discuss with his doctor - depends on how extensive the surgery is and the location.

Radiation isn't fun, but it is effective in killing those remaining cancer cells.

Louise because this is a reoccurrence I would ask the specialists directly about their recommendation/experienced perspective on neck dissection. Some people get a biopsy done of lymph nodes when some of them are slightly enlarged but in your husband's case a biopsy would be a hit and miss. ((And I think I have read on the forum that biopsies to lymph nodes might lead to undue spreading or disturbance of the cancer cell. Hopefully someone here can say yes or no to that last question.))

I am grateful you are seeking the best medical advice. In my husband's case the cancer was moderately aggressive & stage IV, therefore spread to two lymph nodes very rapidly. It had spread earlier on during the initial symptoms, there was tenderness in his neck.

Frozen sections are a must, this is the best way to know that you not only have all the cancer but also a wider than (1cm) clear margin. This used to be the accepted margin but recent studies have found that during the freezing process the tissue can vary/shrink by 5mm so results from frozen sections need to account for these possible variances.
http://oralcancernews.org/wp/wider-surgical-margins-better-for-early-tongue-cancer/


I am sure they will reassure you this will be done because in the case of soft tissue/tongue they get the (clear margin) results right there during the surgery, so they know exactly how much to take out. As for bone, in our case we had to wait over a month, so the surgeon was generous and took more jaw out for which we are very grateful but I had told him to air on the aggressive/precocious side.