I’m sorry you need to go through this. as some one had leukoplakia for over 6 years I can definitely feel you on the fine balance between catching things early versus not being too anxious.

Hope the bump turns out to be just scar!

Thank you so much for your response. Thankfully there is no pain and no hairy type issue. I have been on a regular diet for quite a while now. I see the ENT Cancer specialist first part of February so hoping he can provide more into then. Again, I truly appreciate the response.

Hello Jay (gelibby2003),

Sorry to hear of your wife's diagnosis with advanced base of tongue OSCC.

I am hoping you both begin to notice gradual improvement.

I am so sorry to hear you have been so devastated to witness your wife's suffering and that she is experiencing this.

Nels and other forum staff and members who have been through similar treatment regimens will hopefully be on responding to give you some encouragement.

In the meantime I can only echo some of the things they have offered to encourage others with in a similar treatment recovery.

I am pretty sure Nels has said things like recovery from the radiation can be more patience testing than the surgery recovery, measured more in weeks than in days that he experienced with his surgical recovery.

So I hope and pray that these weeks have passed you guys are both able to notice some slight improvements at least, and here is hoping that they keep increasing and she heals well and increasingly quickly.

I hope you both are able to experience some moments of levity apart the trials, and can encourage her with your presence, and can try to be upbeat for her and of good cheer, if that is at all fitting to her present experience.

I hope and pray the pain medication is able to alleviate her suffering; that the pain is not non-responsive to medication, that she can learn to thrive apart from this.

I hope you can find a support network for yourself, that you have good family and friends nearby to help out, to keep you in good shape as you care for her, to try to keep your spirits up, as you try to care for her and keep her encouraged and that she begins to increasingly thrive and heal.

Sincerely,

Chris

Hello TBO1986,

I just re-read your post in the introduce yourself forum and thought to myself, "Man I was sure I responded to that post already...did my post get deleted or something?!?".

Turns out you posted the same thing in the symptoms and diagnosis forum, and that was were I responded.

But because my senile self is likely to repeat the process I too am going to double post, below is was I responded to your identical post in the other forum...that way it doesn't look like you are being ignored in this forum at least...

____________________________________________Repeated copied text below______________________________________________________________________________________

Welcome to the forums.

Dysplasia is a potentially pre-cancerous condition.

It is similar to say a colon polyp detected on colonoscopy that gets removed and biopsied and comes back not entirely healthy but not strictly pre-cancerous either.


My oral cancer experience started in a similar fashion as you described.

Roughly 5 years before I developed cancer on my right lateral tongue a dentist noticed a white spot. She was super crucial in educating me to take this dead serious and that I had to get it biopsied if it did not go away in a few weeks.

My biopsy was moderate epethial dysplasia. The oral surgeon who did that biopsy then referred me to an oral surgeon who specialized in cancer for ANNUAL follow up, essentially for life.

It was explained to me with the moderate dysplasia I had ROUGHLY a 10% chance of it converting to cancer over my entire life.

Mild dysplasia I am guessing has a slightly less chance of converting to cancer.

Early detection is crucial not just in terms of survival or suffering in recovery from radical treatments but also quality of life issues for things like speaking, swallowing, saliva, keeling your teeth etc…

My 2nd oral surgeon (1st one who specialized in oral cancer) moved about 3 years into follow up and referred me to another who I saw for about 2 years before a pimple like lesion errupted next to the 1st biopsy scar.

So roughly 5 years after the initial possibly pre-cancerous moderate dysplasia this tiny zit like pustule was removed sent to pathology and came back cancer.

As soon as I had a cancer diagnosis I sought out treatment at our nearest Comprehensive Cancer Center and was triaged in to see a Cancer ENT Surgeon in like 2 days.

Very partial glossectomy like a month and a half later, with wider margins and a throat scope and no further cancer found just more dysplasia, this time mild grade.

A month later and I was 90% back to normal 3 months and I could chew on the roughest of foods and eat spices.

Catching it early allowed that.

No chemo or radiation thus far, no neck disection for lymph node removal thus far.

Bi monthly follow ups the first year, every 3 months this second year after surgery.

5 years of no evidence of disease you are considered in remission (semi “cured”).

So if your insurance situation does not allow regular follow up; at an absolute minimum stay on red alert for any changes or developments doing your own oral exams and seek competent medical care if you ever notice anything change and work it out until you have definitive answers.


Since my surgery I have had this year ultrasounds, male mammogram, abdominal MRI and a PET/CT of mid thigh through skull.
(some from other symptoms)

3 Armpit lymph nodes on the PET/CT lit up from the tracer. Pending biopsy decision on that, possible its just inflammation or infection.

All that to say “getting in the system” early and staying on top of things and doing your part can help to keep things from getting much worse.

There are no garuntees in this, but sometimes you can be proactive and help yourself be situated well.

So now at my next visit we will discuss the PET/CT and I hope to have the lymph nodes biopsied before then.

Waiting on interventional radiology to decide if they can get to the nodes with ultrasound guided fine needle biopsy.

Here is hoping your experience ends with just some mild dysplasia that never progresses to anything bothersome.

Best wishes and take care,

R/

Chris

Hello Sequoyah,

Welcome to the OCF Forums.

Sorry to hear about your recent unexpected cancer diagnosis.

Sorry to hear also you had an oral lesion that did not heal in 2-3 weeks and did not know to get it biopsied sooner.

This point going forward, any lesion you have in your mouth that does not heal in 2-3 weeks, the standard of care is to get a biopsy to rule out cancer. Not to beat a dead horse, and you can't do anything about it now, but 6 months is way to long to wait for an oral lesion to heal, unless there is a clear reason for it not to (say rubbing dentures, or dental appliances, and even then you need to be closely evaluated and likely biopsied, as chronic irritation from such things is thought to be a potential trigger for potential development of oral cancer).

I say that in case you ever get any OTHER lesions in your mouth, if they don't heal in a few weeks, be sure to insist on scheduling a biopsy, even if a dentist tells you like I was told by my current dentist "oh that's nothing to worry about....". I had a younger dentist who found the original pre-cancerous tongue lesion about 5 years ago who very seriously instilled in my a healthy respect for being diligent in following up on this white lesion. She was great, but left this dental practice. My current dentist, who my oral surgeon asked that I see before I made an unscheduled follow up (I was on an annual follow up screening schedule, until things progressed/changed, then it was understood I'd contact his office for an earlier appointment and/or biopsy), evaluating me for the sore spot on my tongue near the pre-cancerous lesion biopsy scar, said something to the effect of "oh, that's nothing to worry about").

It was a tad awkward at my next regular dental checkup when they asked about medical history, and I said yeah, now I have oral cancer on my tongue, you can update your records with that.... She meant well, but was under-educated in that regard. The first dentist, STELLAR, this other one, she's fine with cavities and what not, but should stop telling people non-healing oral lesions are nothing to be concerned about....

I had a pre-cancerous white spot on my tongue that was biopsied shortly after my dentist found it. It was pre-cancerous, leukoplakia with moderate epithelial dysplasia.

I was followed closely annually for almost 5 years by cancer specializing oral surgeons and a sore, very minor, very subtle appeared. That was biopsied and found to be cancer.

I'd imagine you will be seen by an cancer specializing ENT surgeon, hopefully at a Comprehensive Cancer Center (CCC) (see https://www.cancer.gov/research/infrastructure/cancer-centers/find ).

I was referred out to a Cancer ENT surgeon after my oral surgeon (cancer specializing one too) called me with the malignant biopsy results.

The ENT surgeon did a very partial glossectomy as my biopsy margins were too narrow.

I too had not a single risk factor, besides perhaps I used to use an alcohol based mouthwash, I guess there is some evidence that may lend itself to irritating the oral mucosa and possibly dysplasia, which is a "potentially pre-cancerous" condition, which in my case DID develop into cancer.

My lesion was also on the side of my tongue, right side in my case, about halfway back the length of the oral tongue.

My pre-cancerous lesion was about the size of a pencil eraser. It was just a white oval lesion, with no pain.

My cancerous pustule like eruption that came like almost 5 years later, was about the size of the last generation wired headphones plug jack, what is that like 2.5 mm I think. The surgeon took out a larger piece of tissue about a 1 cm, if I recall correctly, in both biopsies.

I met with a CCC Cancer ENT Surgeon I think the day after my oral surgeon called my with the biopsy results finding the cancer.

I was triaged in quickly, and they ordered the pathology slides from my other hopsital's pathology for review.

In my case surgery was not scheduled for like a month, but mine was very small, and lower risk.

Because it was so small, I did not even have a PET/CT prior to my partial glossectomy.

Mine was sub-centimeter and was just past being carcinoma-in situ, and had just barely penetrated the basement membrane of the epithelial tissue layer into the muscle and other tissue layers below the "skin" of the tongue.

So my surgeon did not think a neck disection or even a sentinel lymph node biopsy was indicated at the time of the (very) partial glossectomy, nor a PET/CT. He ended up taking a piece of tongue out about an inch long, a cm wide, and I have no idea how deep, not very. He said I would have no lasting defect in speech or eating, would fully recover in about a month, be out of work a week or two. I think I was home a week and some change. More visible stitches than the biopsies. Popscicle diet. Mine was a day surgery. Neck dissection or sentinel lymph node biopsy I'd imagine you'd be at the hospital a good bit. Or if they need to take more tongue.

I am about 1.5 years out of my cancer surgery, had a PET/CT this September, a few armpit lymph nodes showed up on the PET/CT and some minor jawbone lymph node activity, that the radiologist deemed "likely reactive".

Armpit lymph nodes were needle biopised, no cancer found there. Recurrence is always a concern, especially as my partial glossectomy found no additional cancer, but did find more dysplastic tissue ("potentially" precancerous)

If you are able to become a patient at a Comprehensive Cancer Center, I'd strongly encourage you to seek out treatment there. You'll experience the best level of care and integrated approach, and more apt to find experts with extensive experience treating your exact type of cancer.

If you end up having some exotic form, MD Anderson in TX is the top of the list of CCC.

Another member mentioned HPV testing I think.

I asked my surgeon about that, and he is of the school of thought that is more of a base of tongue cancer thing.

I keep forgetting to show him the photo in the oral pathology textbook written by the oral pathologist who did my initial biopsy that shows a lesion on the side of the tongue that was HPV associated Oral Squamous Cell Carcinoma (OSCC) upon detailed pathological testing.

So apparently lateral tongue OSCC can be HPV related but it is more commonly associated with base of tongue cancer. Seemingly this is an area of changing knowledge as well.

Oh, when they did the partial glossectomy they also did a direct laryngoscopy looking for any other tumors in the base of tongue area or anywhere in the pharnyx/larnyx, basically all the ENT cancer areas gets visually scoped and anything suspicious gets biopsied at the time of the partial glossectomy.

If your tumor was deep enough or advanced enough, the first place it is apt to spread is to the your lymph nodes in your neck.

If it is borderline deep they may just take a few lymph nodes, if the concern is greater a full neck dissection is apt to occur.

That will give your treatment team critical information to plan how to proceed with your treatment.

If superficial of a tumor, no chemo or radiation MIGHT be recommended. If they find cancer in a lymph node a more aggressive approach will be warranted.

Even if minor and superficial invasion is found (fingers crossed for you), careful close follow up to detect an recurrence EARLY is key.

Even if the news is NOT good, do not despair.

There are plenty of people on this forum who had their initial diagnosis at advanced stages with lymph node spread. Treatment has advanced quite a lot.

One day at a time.

I hope you have a good support network of friends/family to assist you as you cope with the news and treatment.

I hope and pray the pathology reports bring as good news as you can hope for, and if not, you find an excellent cancer team to put your mind at ease and move forward as best as you can in your particular situation.

Best wishes as you continue on, keeping living and doing the things you enjoy as you embark on this experience.

R/

CQ

Well that experience was a bit confusing.

I thought a non-diagnostic needle biopsy attempt would automatically trigger another needle biopsy attempt appointment.

Once I contacted my surgeons office after waiting a week or so after the non-diagnostic pathology report was released, for them to call me and say "hey, they didn't get the required tissue we need to do it again", a nurse practitioner for my surgeon called me back after I reached out and inquired about a repeat needle biopsy. She seemingly balked, said something about not wanting to put me through that again, and I replied, to deaf ears, it was not worse than a minor bee sting, I'd be happy to do it again to get results. She then said it would be best to follow up with my GP. Her notes indicated that we had agreed, I was like not really, I was asking for a repeat order or whatever if that is the protocol. Nurse practitioner said that if it was a neck lymph node my oncology ENT surgeon would just do an excisional biopsy to get a certain pathology result, but the armpit was outside of his domain.

Contacted my GP and he was like no idea why they'd refer you back to me (perhaps they did not think the PET/CT FDG avid lymph node was concerning enough, or too small a target for an accurate lymph node repeat needle, but they said none of that, so I have no idea).

MY GP did encourage me to keep working it up.

So I called a number at the breast clinic offices of the same CCC and they set me up with a a breast cancer surgeon the next day to see about an axillary lymph node excisional dissection. I was a little surprised they triaged me right away like that, I told my GP I just wanted to loop him in as well, in case I'd need a referral from him. No referral needed. Saw the breast cancer surgeon the next day I think it was. (they do axillary (armpit) lymph node dissection all they time with breast cancer patients)

She was great, looked over the PET CT with me, and discussed the risks of excisional biopsy, and was seemingly leaning towards doing that, but looking at the PET/CT again the node they had initially targetted looked like such a perfect straight shot, she then kind of switched in her voiced preference to give the needle biopsy one more shot.

This time she asked interventional cross sectional radiology to emplace some "fiducials", little non-ferrous inert metal beads that should the repeat needle biopsy fail, or turn up cancer, she'd be able to surgically locate and excise the exact lymph node.

The second needle biopsy went as well, or better than the first even. I'd go back dozens of times not a bad experience at all, in my case. The local anesthesia lidocaine stung a bit at first, but the rest was fine. So I am not sure why the NP was all about "not wanting to put me through that again..."

For the fine needle aspiration on the second attempt, same results of the first, mostly blood, non-diagnostic sample, no lymphatic cells present.

The second core needle biopsy result actually harvested some lymph tissue this time, with no evidence of carcinoma. Some features of a reactive lymph node were noted.

They did include a pretty large disclaimer about it being of the utmost importance the ordering physician do a close clinical correlation of clinical symptoms and radiology results as the same size was very small and may not be indicative of the state of the entire lymph node.

The surgeon called me back this week, to close the loop, and said at this time no further work up is indicated.

So I'm not 100% satisified, but I do agree we are better situated now, having at least some lymph tissue from that node pathologically examined and no cancer was found.

One good thing is that now those fiducial beads are implanted, I'll try to remember to ask about a repeat PET/CT maybe 9 months or a year (well 9 months from now would be a year from the last PET/CT). Seems to me that if the same 3 lymph nodes were still FDG avid then, then an excisional surgical biopsy approach would absolutely be indicated then (barring a solid explanation from the experts on why they may do that apart from cancer, but would seem highly suspicious to my layperson self).

I did note with her on the phone call I still have some lumpy bumps and ridge and valley type features that are sore on the edge of both pectoral muscles where they border the armpit area, which did not seem to register as being significant with her.

I have a lot of minor pains and sore spots, that I kind of down play in severity, well not really down play, as they are just low level annoying sore spots. To me its signals from my body, but I guess that's the fun of medical diagnositcs, filtering out the signal from all the noise.

As we get older more aches and pains...just a little hyper-vigilant I am not missing some early symptom of recurrence or spread.

I never really thought it would be my oral squamous cell carcinoma from my tongue, a tiny micro-invasive grade 1 tumor, I would be a textbook oddity and subject of someones paper I'd imagine if it was OSCC in the armpit lymph node after such an early small tumor.

I was concerned (and still remain not 100% at ease about it) about another primary, be it lymphoma, melanoma, or some kind of soft tissue sarcoma with the odd cystic like feeling sore spots on the pectoral muscles.

But, so far, no news of further cancer.

I'll keep close tabs on all this with my various doctors. At least I am now an established patient with another CCC oncology surgeon and have some fiducial markers implanted if the nodes decide to not be benign.

That's all the news from Lake Woebegone, as it were, with regards to this experience.