Hi,
As you can see from the title, I'm a Zeppelin fan. Anyway, I was diagnosed earlier this year with oral carcinoma in situ stage 0 of the tongue following a biopsy. I had surgery over a month ago to remove the lesion along with a margin of healthy tissue. I was hoping to get the all clear when I went back to the Dental Hospital for my results, but they said that they found both mild and moderate dysplasia in the margins. I have to go back every three months for check-ups. I don't really know what to make of all this. I'm a non-smoker, and I drink very little. They can give me no reason as to why I've developed this condition nor any recommendations as to what I should or shouldn't do to prevent its progression. They also seem pretty clueless about recurrence. Seemingly the studies aren't great. I'm currently raising 2 little boys, 4 and 7, and I'm trying to keep it together but to be honest I'm a total wreck inside. Also, I don't find the idea that they will simply perform visual examinations every few month particularly reassuring. During my first exam at the hospital, the doctor was very clear about the need to remove the lesion. During the second exam, a different doctor said leaving it and just keeping an eye on it was an option. Then on the day I had the surgery with a third doctor, he was very clear about the need to remove it. The whole visual inspection thing seems highly subjective to me, and it also means that cell changes have to reach the stage of being visible before the doctors will take action. Has anyone got any advice? Have you had similar experiences? Am I overreacting to having mild and moderate dysplasia? Should I be thinking about this differently?

Hi Boland,

I am so sorry to hear all this. Cancer is a scary and nebulous thing. The OCF forum is an excellent source of information and we are so glad you are reaching out here. I do suggest you get another opinion. What does the oncologist say? Has radiation been discussed? Stage 0 is early so good news on that front.

Mine was stage 4, took half my tongue and all my lymph nodes on my right side. They rebuilt my tongue with flesh from my forearm and then I received 60 Gray units of radiation to my mouth and neck area. Radiation has significant side effects - severe tooth damage, jaw weakened, loss of saliva, taste, etc. So, in some cases, the tradeoff is worth it, such as my decision. It reduced my odds of recurrence in half. This would be a conversation to have with your oncologist.

There is a great book out there called Anticancer. It goes deep into many aspects of cancer and how to live a cleaner life to help avoid it. I, like you, was never a smoker and only a social drinker. Then, age 52, surprise! Let's keep doing our best to save the stairway to heaven for the right time much later in life! Your title took me back to high school for a bit. Thanks!

Stay safe and keep the faith,
Nels

I have a schizophrenic opinion about situations like yours. I’m not a fan of doing nothing, so the one doctor that suggested that, my personal opinion is you should stop listening to them about anything. That is not a plan.

On the other hand I’m not in favor of over treating things either, which some doctors and hospitals are prone to do. You can blame that on an over abundance of caution, and unfortunately sometimes financial incentive.

So here is what we actually know about dysplasia. Of low and mixed low-mid grade dysplasia, only 25% of the time does it move to malignancy. High grade pretty much always does, and needs to be removed or radiated. The problem as you have stated is this is not something you can see or feel, so knowing if it is low grade or high is always dependent on a biopsy. In practical terms are you willing to get an incisional or punch biopsy a couple times a year? That time period would ensure that if it was moving to the dark side, you would catch it early enough to deal with it through a minor procedure. The fly in this ointment is that we know that people, more women than men, that have this occur with no known risk factors, very often have multiple sequential recurring cancers every couple years. At some point if that is you, you have to say when have you had enough little bits of your tongue dealt with in a non replaceable surgical manner? The guess is that these people have a genetic aberration, or stated differently an inherited genetic frailty that allows this all to happen repeatedly.

Having radiation will ultimately deal with this. But radiation treatments for something that is still small like this come with lifelong side effects. Some very unpleasant as I can attest to. So if that is part of your treatment plan, I would want the smallest practical field of radiation, and if possible to get less invasive proton beam radiation. The push back you will get on that will be that it’s more expensive and your insurance may balk.

So that’s a lot of writing to give you nothing actually actionable. I wish I could offer better advice, but at least this gives you a framework to think of your choices within. Good luck with this. Please post back in this thread what you decide to do and stay in touch. B

Hello Boland,
Sorry that you are having this to deal with this. When I faced this demon my wife and I had 3 young children. It was more a blessing for me to have the distraction of raising children while going through the rigors of treatment. They are now 21 years older and have grown up well. Being a "wreck inside" is something we are mostly all familiar with. Working on that is harder than going in for any treatments-but you can. Distraction, calming your mind and stop trying to look at a future you can't know or see. Living one day at a time and each day with meaning.

Now on to thoughts about your treatment. The behavior of squamous cell carcinoma (assuming that is the "carcinoma" you mention) is such that you do not ever want to let your guard down. The stories of it "recurring" are legendary. (frankly I consider it to be evil). "Recurring" as a term for this cancer, is almost complete BS. IMHO, a recurrence is most likely an incomplete treatment. i.e. the excision didn't have clear margins. This is not to scare you though, because I think you are in a pretty good spot right now.

However, a word or two about doctoring and doctors. You have to have complete confidence in them, the treatments they offer and their perspective. From what you wrote I don't get the sense that you have that. You didn't mention where you are receiving treatment but where can make a difference. If possible, traveling to a facility with more experience for another opinion is worth the effort even if the treatment recommendation is ultimately the same. I think you are wise to have concerns, not to have more fear but because with that energy you can muster action and diligence. You can and should have optimism at the same time.

Keep in touch and ask questions any time.

(I'm not a doctor and this isn't medical advice-it is my opinion.)

PS: Rock On Zeppelin!

Hi Nels,
Thanks so much for replying. You've been through an awful lot. The treatment sounds really full on. Do you go back for regular check-ups? I'm in Ireland so I don't know if they handle oral cancer in the same way over here. The first oral surgeon I went to used the word cancer. I was then referred on to the dental hospital where the doctors don't call it cancer. They refer to it as dysplasia. They said that they don't call it cancer if it's in the epithelium and hasn't gone deeper. None of these doctors are oncologists; two of them are maxillofacial surgeons. I'll check out that book you suggested. Thanks again for taking the time to reply. It's nice not to feel so alone. Nice to find a fellow led Zeppelin fan too.

Hi Brian,
Thank you so much for replying to my post. You're obviously very well informed. I wish I could bring you with me to my next appointment! The information in your post was very helpful and it's helped me to get some perspective. It's reassuring to know that of low and mixed grade dysplasia only 25% of the time does it move to malignancy. You also helped me to think of questions to ask the doctors at my next appointment. When I received the news last week it took me by surprise so I wasn't prepared and couldn't think clearly. It was very confusing actually. The doctor who gave me my results for some reason decided to smile broadly the entire time she was speaking which I found disturbing and confusing considering the nature of the information she was relating to me. I hope you are doing well and have recovered from the effects of the treatment you underwent. I wonder also if you have heard of any connection between low ferritin levels and issues with the epithelium as two blood tests I have had recently have shown that my ferritin levels are below average.

Hi Mark,
Thanks so much for replying. It's nice to get the perspective of another parent who has dealt with this issue. It's also reassuring to read that you have survived and are here to tell the tale 21 years later. You're absolutely right that I don't have full confidence in my doctors. The issue is that I'm in Dublin, Ireland, which, I need not tell you, is a small island, so treatment options are somewhat limited. I asked about going privately as my insurance would cover it but was told that in Ireland oral cancer is best dealt with in the public system which involves attending the Dublin Dental Hospital who work in conjunction with another hospital (St. James's). The maxillofacial surgeon who removed the lesion in the dental hospital said that if I needed anymore surgery I would have to attend St. James's, another public hospital. The doctor who gave me my results for the surgery last week didn't do a great job of explaining the situation to me. The maxillofacial surgeon who actually performed the procedure seemed far more experienced and competent. I've emailed the dental hospital asking them if I could speak to the surgeon instead about the results so I'm hoping he'll get back to me. In the mean time, I will do my best to rock on and not succumb to the black dog.

I don't know how the system works in Ireland but it has always been my belief that while dentists are great for teeth they are less so for cancer, so find a cancer specialist. Dentists see a fair amount of oral cancer but it is not 100% of their world. Look for an oral cancer specialist (hospital) where oral cancer is 100% of what they do.

Boland

Happy to offer my perspective. I do get regular check-ups. At this point, a couple years out from surgery and radiation, I get scans of my chest, scopes down the throat, and oral exams about every 3-6 months from both my head and neck doc and my oncologist. I used to get them more frequently.

BTW, Brian has been through many surgeries, many treatment procedures, helped so many here for decades, and as you can tell from his response, he knows his stuff. I like your idea to "bring him" to your next appointment. Print his notes and literally bring them!

On the topic of coping, my wife and I were slammed by my cancer diagnosis. Our four boys were ages 17-23 at the time we found out. We are both active, healthy eaters, etc. It was so hard to think about the pain and fear cancer caused in all our lives. Sometimes, I felt like I was causing it. I knew that was irrational but it still crept in there. Some ideas that helped. Keep a journal. Sometimes I would wake up at 2 am and write for hours. It was therapeutic and I go back and read it occasionally to remind myself how far we have come. Connect with loved ones. In my most trying treatments and days, I had a goal to connect with a close friend or family, or old college buddies, or old high school buddies, etc once per day. It forced me to talk it out. I kept up my daily exercise routine even when in the hospital. Sometimes that simply meant dancing in place, a short walk around the hospital, or stretching my legs. As I got better, I increased it. Faith. Everyone's faith is different. But, I can share with you that when I needed it, I got the love and support I needed. And, through this experience, I was able to find a deeper faith than I ever thought possible. I think our hearts and minds open up more through these vulnerable experiences. At least mine did.

Sending you positive thoughts. Keep us updated.

Stay safe and keep the faith,
Nels

Boland

One more suggestion, if you have not already, google "having cancer is like finding a lion in your fridge." It's a short but powerful and sarcastic/funny perspective on finding out you have cancer.

Nels