Hello there:

I am brand new here and hope that I'm posting in the right forum. My mother was just diagnosed with Stage 1 SCC (located in back of mouth at junction of hard and soft palate). Mostly in situ but some locally invasive components.

ENT removed the cancer two weeks ago, although at the time he did not think it was cancer, just removed it "in case." Removed about 1.5 cm. Had been watching this "spot" in her mouth for a year. Spot never changed at all, but he finally decided to just take it out.

He called the cancer "minimal" and "not aggressive." However, I keep reading on this site that SCC in the mouth is usually aggressive.

Here's my question: We have to decide whether to do more surgery and try to take more area out as added insurance, or do six weeks of radiation. My mom is 75 and already has moderate emphysema and temporal arteritis (an inflammatory condition affecting blood vessels in the brain, which she is treated with 2 mg prednisone daily to keep it controlled). Still smoking and drinking, although she's now thinking about quitting smoking.

After reading all these side effects of radiation, I just worry about her going through all that when she's not that strong to begin with. It sounds like hell. ENT said it was a "gray area" whether to do surgery or radiation and didn't recommend one way or another.

Second opinion with ENT and radiation oncologist scheduled next week. CT scan scheduled too, though they don't think lymph nodes are involved.

Is there anyone out there who has NOT done radiation and lived to tell the tale for more than a short time? (I did read one posting from 2002, but are there others?) If my mom were younger and stronger I'd be leaning more to the radiation just in case, but given her age and health I'm hesitant. Am I being short-sighted?

It's her decision but I'm just trying to get some opinions/information to help. Sorry to be so lengthy and thank you for your help.

Kate

Kate, there are definitely people who pop in now and then who have early (stage 1 or 2) cancers and do surgery but not radiation and their cancers do not come back. I think the reason you don't see them as much here is they have less major issues after treatment, and they also are less able to support the many people who come here as they are going through radiation or radiation and chemo because they haven't gone through that themselves.

If your mother doesn't have radiation, she definitely should have enough surgery to get good margins around the cancer (which is why, it sounds like, they want to do more surgery) and, if she is not being treated at a CCC, I recommend she get a second opeinion from one about the need for radiation. But it does sound to me that with her health problems, and the fact that her tumor is Stage I, maybe radiation is too aggressive for her. I'm not a doctor though just someone who's been through it all!

Nelie

As you can see from my signature, my husband is one of those people Nelie is talking about. His dentist identified a small leukoplakia on one side of his tongue that had not been there on his previous visit. A biopsy by an oral surgeon showed "moderate dysplasia," not cancer. By the time a local ENT did an excisional biopsy to remove the whole thing a month later, it had turned to SCC in situ, with a tiny bit superficially invasive -- very similar to your mom's situation, it sounds like.

My husband, who is in his 50s, did not have additional surgery or radiation. Once the cancer diagnosis came back, he got a second opinion at Johns Hopkins Kimmel Cancer Center, one of the top centers in the US for this kind of cancer (and fortunately quite close to us). He is checked there regularly and, in an abundance of caution, gets seen between those appointments by the ENT who did the excisional biopsy. He has also had two PET scans that showed no activity.

Like Nelie, I'd recommend a second opinion at a comprehensive cancer center with a specialized head and neck cancer clinic. You want the opinions of physicians who see these every day. A starting point for finding such a facility is here .

And, as you know, your mom needs to quit smoking.

All the best,
Leslie

Hi Kate -
I am just giving you some additional information from another oral cancer patient, and you can take from this info whatever assists you in working with your Mom to make the decision. I am not recommending one way or the other. You will see by my "signature" that my husband has had 4 small oral cancers. He is now 63. He never had radiation as they all had clear margins, good scans, non-invasive, etc. Now whether or not the cancers would have recurred had he HAD rads, is an unknown. His RO said that he thought one of the cancers would have recurred anyway, even with radiation which would have been angled differently. He is doing fine right now, and is going up for the big routine check-up on Tuesday. I have to agree with Leslie, and urge your Mom to quit smoking right away. My husband never smoked, rarely drinks, and his cancers are thought to erupt from the oral lichen planus or oral leukoplakia he has had for decades. Hope this helps
Warmly, JaneP

Wow, thanks to all three of you for all that great info. I know it's the purpose of this forum, but it still amazed me to log in and see three replies, all from perfect strangers just taking the time to help! It means a lot.

My mom is not at a CCC currently, but I would like her to at least get an opinion at one. Meanwhile, I know the quit-smoking thing is imperative. For the first time ever, I think she is actually open to giving it a try. I talked to her primary doc yesterday and he's going to try once again to get her in his smoking cessation program. In the end, of course, it's up to my mom and I can only support her. I'm hoping for the best.

Once again, thank you for taking time to share your knowledge and experience with me. All the best to you and your family members.

Kate

Kate - Keep in touch and tell your Mom we are pulling for her, ok? JaneP

I will do that, definitely. Thank you again for your information and support.

Kate,

Looks like you've got the eye of another surgery only patient. No recommendation here, just letting you know that there are many of us around. Smoke cessation is certainly the way to go and I'm happy to see that your mom is considering quitting. I work with my patients on a daily basis hoping to get them to quit. It's a tough thing to do, but having had oral cancer should be a great motivating factor.

I wish you and your mom good luck and if she decides against radiation, the surgery is certainly indicated to assure clear margins.

Jerry

Dear Kate,

I know that our purpose is NOT to diagnose, but we can add our experiences to your body of knowledge. You are smart enough to know that each case is different.

My cancer, unlike most on this forum, was on the hard palate (and also on the maxilla,) so it is similar to your mother's.

My surgeon said that we are fortunate because these palatal cancers are sometimes more easily removed totally, without recurrence. I hope he is right!!

I had "aggressive" surgery (his term) and he assured me that I have clear margins. I also had a neck dissection on that side, to be as certain as possible that I did not have metastasis. My margins were clear, and my neck nodes were negative for cancer.

Based on these results, he did not recommend radiation. I begged for it at the time, and he said it was destructive and it was not called for according to treatment protocols for patients like me.

Now...if I have a recurrence (sounds ironic, doesn't it??) I will still have a weapon to use.

Yes, it has made me nervous but I am so much more comfortable, since my mouth is normal except for this big hole in the roof of my mouth and the loss of five teeth and a third of my upper jawbone.) Still this loss is nothing compared to what some people here have to contend with.

I have a friend who has had similar surgery, and her circumstances were different from mine, and her surgeon was not able to get clear margins, so he recommended that she have radiation. Later she needed more surgery, and she had trouble healing properly.

So.....you are asking for advice...Here is mine: Go as fast as you can to the nearest CCC and get a second opinion. They need access to your pathology report, as well as to your slides and samples, most likely. If your ENT did not feel that your lesion was cancer, then he did not necessarily make certain that he got 1 cm of clear, healthy tissue around it. If it isn't cancer, then you don't want too large a surgical wound. If it IS cancer, then you DO want a significant margin of healthy tissue to be removed.

I am betting that your mother might need either more surgery (which won't be as bad as the first time) to be certain of her margins, or at least selective biopsies of the current margins.

I am also betting that at 75, if they have an equal choice, they will suggest the surgery to clarify the margins, rather than the ordeal of radiation, which leaves the patient with permanent oral problems.

If I were her dr., I would first be as certain as I could be that I had gotten clear margins...It's worth going to sleep one more time.....and then if I find that the cancer has invaded, and I can't get the margins, then I"d consider the radiation.

I was given the neck dissection because my lesion had been overlooked (sound familiar??) and had spread along my gums and onto my hard palate. Because of the time and the size, my dr. wanted to be certain. I welcomed the neck surgery. Not only am I assured that I had no metastasis, but now the primary pathway for mets has been removed.

Of course, nothing is 100% sure, but we've done all we can reasonably do for now.

Please go to a CCC for a second opinion....and I would consider staying with them for a treatment plan....and keep us posted. Your dr. will understand if you decide to stay with the cancer center.

Do the most aggressive treatment. If and when she were to EVER have a recurrance it just isn't good news- at least from what I've read here.

I had chemo and radiation after my radical topngue surgery and it wasn't fun but I powered through and I feel at peace that I did everything possible to kick this disease. That in itself if worth all the time and discomfort I went through.

Everyone is different in how they handle the treatmetns of cours ebut I didn't think it was too horrendous-- def a lot better than I thought it was going to be.