Hello everyone. I just joined today and I look forward to getting to know you all. I have a few questions and would love to hear anyone's ideas or experiences. Please forgive me if I'm long winded.

I am a 33 year old woman who was was diagnosed with SCC of the right ventral tongue last week. I've had many lesions in the same area for the past ten years, but this is the first time that one has tested positive for cancer. The tumor is 1.5 on the surface and did not show up on the MRI. My ENT said that means it is probably superficial. The MRI showed that some of my lymph nodes on the right side were swollen, so I am scheduled for a needle biopsy on Monday. I am already scheduled for a surgery on the 9th to remove the tumor from my tongue and they will add a neck dissection if the needle biopsy is positive for any of the nodes. The surgeon said that since the tumor is near the front of my tongue, it could spread to either side of my neck. What I'm having trouble deciding is whether to have an elective neck dissection if the biopsy comes back negative. I have a three month old baby. I want to be aggressive in fighting the cancer, but don't want to have unnecessary treatment that might impact my ability to care for her. The information I've found so far seems mixed regarding neck dissection for t1n0 patients. My ENT is on the fence about it and the oral cancer specialist at the local teaching hospital who I saw for a second opinion said he wasn't sure it was necessary.

Would it make sense to wait until after the tongue surgery to decide? Then I could find out if the tumor is HPV+ or not and whether it is well differentiated. Are there other things that I should be considering while making this decision? Any opinions or information would be much appreciated. I hope this isn't too many questions for a first post.

Welcome to OCF. Congratulations on being a new mother!

A second opinion at a cancer center would be an excellent idea. This would help you to make plans on which way to go with the neck dissection. Just remember surgeons cut, thats what they do and once its gone, its gone. I have included links on the bottom for best hospitals and cancer centers.

Best wishes with everything!


http://www.oralcancerfoundation.org/resources/cancer_centers.htm
http://health.usnews.com/best-hospitals

Msmac

The question of an elective neck dissection usually elicits two disparate responses on OCF. One school of thought says: Better safe than sorry and has the lymph nodes taken out "just in case". They usually post the results that their lymph nodes had no cancer as though that was a good thing instead of proof that they just had unnecessary surgery. Now you can already tell from the tone and tenor of the previous sentences that I am biased and a believer in the school of thought that if there if a biopsy of a lymph node is negative, it's an acceptable risk not to have a neck dissection in order not to severely impact your sympathetic nervous system.
This argument surfaced in a different form decades ago in breast cancer, when many advocated total breast removal or in some cases premptive breast removal, as an "aggressive" treatment. Time and subsequent studies have shifted most medical and public opinion away from that approach. Similarly, most neck dissections are now "modified radical" instead of the old radical method, so less muscle damage and fewer lymph nodes are removed. Still it is not a walk in the park and very serious surgery with life long effects.
In your case, your ENT "is on the fence" and the oral cancer specialist's second opinion "wasn't sure it was necessary". Your signature line indicates that your intial staging was n0 which means there was no indication of the tumor having spread to any lymph node. So IMO, not having a neck dissection if the biopsy is negative is a very reasonable decision especially since your doctors believe that not getting an elective ND is a viable option
As far as factors go , one is what the planned surgery involves. If they can take out your tongue tumor without having to slit open your neck like they need to do for a neck dissection, then your recovery will be quicker if your forego the ND.
finally, if your lymph node biopsy is positive. be sure to ask about getting a modified radical neck dissection
I declined to have an elective neck dissection my first time and when I finally did have one during the salvage surgery, it showed the radiation and chemo had wiped out the cancer in my two nodes, and the rest taken out were healthy. so in the end my neck dissection turned out to be unnecessary.
Charm

I was diagnosed with tonsil, tongue and neck cancer. They operated to remove my tonsils and to biopsy my tongue and the tumor in my neck. Both of which came back positive. They wanted to wait until I finished chemo and radiation before doing the neck dissection. I had 3 rounds of chemo induction (Cisplatin, Taxotere and 5-FU) before they started my 7 weeks of radiation. After the 1st round the lump in my neck was gone so I didn't have to have the neck dissection.

Cathi

Time for me to chime in about the ND.

I had the same tongue cancer as you. My surgeon at a top rated Cancer Center told me you have squamous cell cancer of the tongue, but nothing showed in the lymph nodes. He also said, he'd like to take the lymph nodes "just in case". I asked him what do you mean "just in case" he said, the cancer cells travel they are so small a CT/PET scan won't pick them up until they are the size of a nickel. I told him take them I'd rather be safe than sorry, he agreed. No there weren't any cancer cells in the lymph nodes. If I didn't have it done I would be wondering (today) are there any cancer cells that are going to pop up in the next few years because I didn't have this done.

I know it sounds scary to have the lymph nodes removed, I'm the biggest baby going. Really, I expected a lot more than what I went through. I have had little problem with my neck it gets stiff all I do is massage it, it's gone.

The major problem I have is saying words with an S sound, but then again I'm a fast talker.

As it was stated surgeons like to cut, BUT I went the long way to get to my surgeon at Moffitt Cancer Center. I went through 5 different doctors here who don't know which way is up and they still don't. One of them sent me to a Radiation Oncologist because he thought I needed radiation and he was an ENT Surgeon, go figure. The Radiation Oncologist asked me what I was doing there that I needed surgery and not radiation. He said, I won't put you through that for this type of cancer you need surgery he made a call and I was on my way to Moffitt.

The best thing you can do is go to a Cancer Center they know what they're doing.

Best Wishes...Congrats!!! on your new additon.

Connie

oops, forgot to include the link on the main OCF page that describes the different type of neck dissections
OCF- neck dissection
It's always good to ask a surgeon which one of these is planned.
As you can see, some neck dissections are much more invasive and life quality damaging than others.
Charm

Hi. Sorry about the lesion. I had a scc in the same place. Mine was slightly smaller and supposedly superficial. It did metastasize, but only a short time after I had the lesion removed. After spending time with one ENT who I am sure was on the right track, but I just did not click with her I guess, I ended up at MD Anderson in Houston. That was a good move for me.

You will have to wait to find out if any of your lymph nodes have cancer cells before you can plan too much either way about a neck dissection. None of the treatment is a picnic, but it sounds like yours is definitely treatable in some fashion. The doctors where I was treated told me, "yes it is curable but only now, and if you do it the right way," or words to that effect. It is really important that you go the extra mile to make sure they/you know as much as is possible to know about your cancer. Having a lesion on the oral tongue can be tricky as they spread easily, and yes they can go to either side of the neck, but if yours is really as small as you say, it probably (not for sure) will not be on both sides now.

The opinions I had at first said it was not necessary for a dissection. I guess I would wonder (in hindsight) about doctors making definite statements about needing or not needing neck dissections without knowing about the lymph nodes and the extent of the lesion. Not to nag, but make sure you know the lymph nodes are clear (fine needle biopsy is not fool proof either as they can miss cells) and the lesion is truly superficial. Especially for the sake of your dear baby. I am a brand new grandmother of a two week old and so can well imagine how you feel. There have been other new mothers who found they had cancer on their tongue, so you are not alone.

Yes, any decision you make will probably have to wait until you have further information. Yours probably will not be HPV if it is ventral tongue near the front of your mouth.
Best,
Anne

Charm...Thank you for the link I never knew which one I had, Supramohyoid ND.

Connie

Thank you all for taking the time to respond. I have taken a look at the links and will do some more reading. The doctor I saw for my second opinion was at UCSF (at the cancer center). I saw him before I'd had my MRI. He said my surgeon is good and that I didn't need to transfer my treatment to UCSF unless the MRI showed the tumor was bigger than expected or had spread to the neck. My needle biopsy is tomorrow, so I will have more information soon. I guess if it comes back positive, the decision will be made for me. Thanks again for all your words. It really is helpful to hear from people with experience.

I have to agree with anne o - I too had a lesion on my tongue - my CT showed no spread to my lymph nodes. There were 6 weeks between my diagnosis and my surgery as I was diagnosed before Christmas - over the Christmas holiday I ended up with one swollen lymph node- I could palpate it. After new years I had an MRI - my lymph node did not highlight. My surgery was booked. My dr. Who is top in his field here in Canada - told me he wanted to do a hemiglossectomy and neck dissection. I was good with this as I know this cancer can be aggressive and know that it could easily have spread. The day of my surgery I took the dr.s finger placed it on the swollen lymph node. he asked if it was new - told him I had felt it from before new years, and it didn't highlight on the MRI depite it's size- it was 1.5 cm. They removed a portion of my tongue rebuilt it and removed 40 lymph nodes - one of which did have cancer cells.
The surgery is big, no lie, but for me it was well worth it. I am two days away from fishing my radiation and chemo.
I was out of the hospital and eating fairly normally within 10 days. My neck is stiff but has loosened up considerablly - I'm not swollen - though radiation has made the healing harder.
My concern with a needle biopsy is that they may miss small cells that could be cancerous. I know nodes can swell for a variety of reasons, infection, inflammation, etc... But not knowing for sure would freak me out. I know it seems crazy to jump into a big operation like that if you didn't need it, but I would rather put up with the recovery than go through a surgery, wait a few months and find out it was in my nodes and have to go for another surgery. Then possible chemo and radiation. But then I had a small node highlight on my other side just at the start of radiation and told them to include the right side with the left for my radiation so - maybe I am into overkill.

I know it's a hard decision - but this is an insidious and aggressive disease Do what you can to elimintate it - first time out. There are no guarantees we could possibly do everything and still have it recur. But at lease you have no what if it hads?...

Good luck tomorrow

Here for you hon....xxxxx

The lymph node biopsy came back negative. The radiologist who did the biopsy said he could not see any enlarged nodes on the ultrasound (MRI showed enlarged nodes of 1.5 to 2cm three days prior). He had another radiologist come in and look and he didn't see any either. He ended up only sampling one node under my jaw on the right side. That is the one that came back clean. After much discussion, we decided to only have the tongue resection on Monday. We will then make the decision on END based upon the pathology report from that surgery and a PET/CT. My tumor measures 1.5 cm, but the surgeon can't tell how much of that is scar tissue from a prior surgery to remove precancerous lesions. So we will know more about actual size and depth after it has been fully excised. I also plan to get another second opinion at UCSF prior to deciding. Thanks again for all the input. I'm sure I'll have many more questions as we move through this process.

Tracy,
I say so far so good! We all have to take it one day at a time.
Anne

Path report from tongue resection came back today. Tumor was 1cm at it's biggest area. It was moderately differentiated and had penetrated to .45cm. It had also invaded a nerve. They got clear margins all around, but one was only .4cm. The other were 2cm, 2cm and 3cm. They also found some dysplasia at one margin. We are scheduled for a tumor board review next Thursday followed by selective neck dissection the next week unless recommendation is for radiation instead. I am very worried, but glad we are moving forward with this process.

Tracy,
Mine was moderately differentiated also. Mine was really more like an ulcer, and it was slightly under a cm at its largest, but only 1 mm deep. My report said it had invaded muscle "focally" which means in that location, which would seem to indicate somewhat more aggressive.

Tongue tumors like ours are tricky so that is why they tend to use radiation to clean up after surgery, even if they think they got it all. All your margins are good except for the .4 cm, as you know.
The more recent research I have seen (can give links if interested) indicates that surgery followed by radiation for oral tongue cancer can give very good results, with high survival rates. It is not so bleak if the lesion is smaller.

Get a second opinion if at all inclined. Sounds like you are getting good care though. I would ask about that .4 cm margin--depth?? I think mine was not a lot wider/deeper than that however.

Best,
Anne

Hi Anne,

I like my surgeon very much, but will probably still get a second opinion anyway just to feel more sure about things. He doesn't think I need radiation but he does plan to send me to a radiation oncologist for a consult. I am afraid of the long term effects, but think it might be a good idea to be safe. I guess I'll wait to see what the radiation oncologist says about that. I would be very interested to see the links you mentioned.

Thank you very much,
Tracy

Tracy,
I will dig them out, and pm you. My ENT oncologist wanted me to have radiation when the rest of head & neck did not think I needed it. That was because his hunch was that it was more aggressive. Then I ended up with a lymph node that had microscopic extracapsular extension. I am not the only one with a small lesion and ECE on this forum. Anyway, my ENT was proven correct. I too was worried about side effects, long term effects. Still am, but I take it more one day at a time now. Second opinions are a good idea.
Anne

MSMAC, For what it's worth, I went to see a local MO yesterday for the first time (as my primary team was at Mass General) and he said "we are seing less and less neck dissections these days". He told me this because I had just explained how my surgeon thought he was going in for a Brachial Clefy Cyst only to find a large node with SSC in it. Our next step was to identify the primary tumor with a PET and the whole dissection topic was really just skipped over. Now I don't know if this happened because I had my surgery at Tufts and my TX at Mass General and there was some communication issues there or if everyone just really agreed that with the effectiveness of radiation these days that ND's are no longer the best route. I really don't know. I never had one. One thing my RO told me was that from your very first rad TX each session kills 99.99% of cancer cells. That's EVERY session. This is a top guy at MGH. 35 years in head and neck. Recommended to me by Dr. Bob Arnot. Good luck to you. Try not to het ahead of yourself. You're in the right place. Stay close. MaineWill

Neck dissection, surgery, definitive radiation: all depends on what type of head and neck cancer the patient has, stage, nodal involvement, histology, etc. HPV +: definitive radiation. Oral cavity: if surgery can get it all that is best, but depending on size and other factors, radiation is often recommended anyway.

Now I am talking like I have had years of experience, and I have not!
I feel years older, wiser since my initial treatment last fall, though.

My follow-up radiation treatment was not as heavy a dose as if radiation had been the only treatment, so there is the trade-off, although I had to have chemo as well, all for such a small lesion and one lymph node. Still well worth it as I believe it was the best treatment for what I had.

Anne

After my biopsy came back positive, the 1st Oncologist told me that he would do Rads and Chemo and this might take care of the Cancer. Then I was sent to a University Hospital because my tongue was so infected it filled my mouth. The Oncologist there scared the crap out of me with what he wanted to do. After he drained the mess out of my tongue, which sprayed him in the face , I went home and was really afraid of his tretment. Then I went to OSU CCC and saw a 3rd Oncologist, for his idea on what he would do. Needless to say I went to him for the surgery to my tongue. When I woke from the surgery, he had already done the neck dissection but did find Cancer in the nodes. I was glad he did the dissection. In my case, I was glad he did it.

Thanks for sharing your experience. I had a bilateral neck dissection on Friday and they found cancer in what they think is the sentinel node. We are waiting for the full pathology report to find out if there is anything else. So I, too, am glad that he did the dissection.

That's great - that you are happy with what they did - I would be - I'm of the better safe than sorry Ilk! Take care - good luck with he results - hoe you heal quickly!