tongue cancer

katlou

Hello,

I am new here and just received a diagnosis of squamous cell carcinoma of the oral tongue.  It is underneath my tongue on the left side and the pathology report said it is superficially invasive. It is a T1N0 as my ct scan of my neck was normal.  My ENT says that nothing more needs to be done except a wait and watch approach.  My ENT removed the entire lesion with clear margins but based on the size of the tissue removed I am concerned that there is not enough of a clear cancer free margin and the size of the margin was not mentioned in the pathology report.  He also doesn't think neck dissection is required.  I am very concerned about his approach considering all the people I have read about on discussion boards and studies I have seen where everyone seems to be getting at least a partial glossectomy and some are getting neck dissection or at least a sentinal node biopsy even with a T1N0.  Can anyone tell me if they have been advised of a wait and watch approach for this situation?  Just FYI, I do have a second opinion with an ENT who treats this type of cancer (my present ENT also treats this type of cancer) at another hospital in a couple of weeks.

swopoe

My husband had a very similar

My husband had a very similar diagnosis in October 2015- SCC of the oral tongue, T1N0. The lesion was small, but it was locally invasive, poorly differentiated, and had possible perineural invasion. It was also HPV negative. He had surgery which removed the lesion with clean margins, and at the same time had a partial neck dissection which also came back clean for cancer. We had two options- wait and see and do nothing or go all in with chemo and rads and be sure. My husband was 40 at the time and in otherwise great health and we went all in. We didn’t want to wonder what if. So two years later he is cancer free and doing great. Did we need to do all that treatment? Maybe not. Maybe so. But if we hadn’t, would he be ok now? We didn’t want to take any chances with that.

Tonita

I never saw an ENT for my

I never saw an ENT for my tongue cancer (Squamous Cell Stage 1)  My primary doctor sent me directly to an oral surgeon who sent me directly to a head and neck cancer specialist.  After the biopsy surgery was scheduled.  The tumor was removed with 42 lymph nodes and no further treatment was scheduled. 

You should maybe get your second opinion from a head and neck cancer dr.

johnsonbl

The NCCN guidelines...

Appear to offer 3 courses of action...  1)  resection of primary plus neck dissection  2) resection of primary plus sentinel node biopsy or 3) definitive radiation of primary and high risk lymph nodes.

I would seek a second opinion and specifically ask both providers how your treatment plan fits with the NCCN guidelines.

Brandon

katlou

Thank you for your responses

Thank you for all of your very informative responses.  To give a bit more information my cancer is HPV negative.  The second opinion doctor I will be seeing is an otololaryngologist who is a head and neck cancer specialist.  He performs cancer surgery, glossectomy, cervical node dissection, etc. and also does reconstructive surgery and he is out of one of the best hospitals in our area.  He uses advanced procedures like robotic surgery for some forms of cancer that he treats.  Had I suspected this was going to be cancer I would have probably gone to him to begin with.  The diagnosis was a total shock to me.  I have had two prior biopsies of this general area of my tongue and they were diagnosed as benign conditions and my prior ENT never suggested removing the entire lesion.  I went to my present ENT because I just wanted the entire lesion removed so I didn't have to think about it anymore and unfortunately it was too late but I have been diligent about getting biopsies done regularly.

Brandon - thank you for the NCCN guidelines.  My present ENT definitely isn't following those guidelines.  In fact all that has been done is an excisional biopsy that removed the entire cancer with clear margins, along with the ct scan. He feels this is enough and to now wait and watch.  I prefer the resection of primary plus sentinal node biopsy approach since my cancer seems to be very minimal but I will see what my new doctor has to say.  I am definitely not going to use the wait and watch approach after everything I have read and what others on discussion boards have had to say about their experiences.

I wish all of you well and continued good health.

armana

katlou said:

Thank you for your responses

Thank you for all of your very informative responses.  To give a bit more information my cancer is HPV negative.  The second opinion doctor I will be seeing is an otololaryngologist who is a head and neck cancer specialist.  He performs cancer surgery, glossectomy, cervical node dissection, etc. and also does reconstructive surgery and he is out of one of the best hospitals in our area.  He uses advanced procedures like robotic surgery for some forms of cancer that he treats.  Had I suspected this was going to be cancer I would have probably gone to him to begin with.  The diagnosis was a total shock to me.  I have had two prior biopsies of this general area of my tongue and they were diagnosed as benign conditions and my prior ENT never suggested removing the entire lesion.  I went to my present ENT because I just wanted the entire lesion removed so I didn't have to think about it anymore and unfortunately it was too late but I have been diligent about getting biopsies done regularly.

Brandon - thank you for the NCCN guidelines.  My present ENT definitely isn't following those guidelines.  In fact all that has been done is an excisional biopsy that removed the entire cancer with clear margins, along with the ct scan. He feels this is enough and to now wait and watch.  I prefer the resection of primary plus sentinal node biopsy approach since my cancer seems to be very minimal but I will see what my new doctor has to say.  I am definitely not going to use the wait and watch approach after everything I have read and what others on discussion boards have had to say about their experiences.

I wish all of you well and continued good health.

My 2 $C

Since HPV negative, I would be very nervous with the current recommendation. You are very lucky that you have caught this early.

Please keep us posted with the 2nd opinion

swopoe

katlou said:

Thank you for your responses

Thank you for all of your very informative responses.  To give a bit more information my cancer is HPV negative.  The second opinion doctor I will be seeing is an otololaryngologist who is a head and neck cancer specialist.  He performs cancer surgery, glossectomy, cervical node dissection, etc. and also does reconstructive surgery and he is out of one of the best hospitals in our area.  He uses advanced procedures like robotic surgery for some forms of cancer that he treats.  Had I suspected this was going to be cancer I would have probably gone to him to begin with.  The diagnosis was a total shock to me.  I have had two prior biopsies of this general area of my tongue and they were diagnosed as benign conditions and my prior ENT never suggested removing the entire lesion.  I went to my present ENT because I just wanted the entire lesion removed so I didn't have to think about it anymore and unfortunately it was too late but I have been diligent about getting biopsies done regularly.

Brandon - thank you for the NCCN guidelines.  My present ENT definitely isn't following those guidelines.  In fact all that has been done is an excisional biopsy that removed the entire cancer with clear margins, along with the ct scan. He feels this is enough and to now wait and watch.  I prefer the resection of primary plus sentinal node biopsy approach since my cancer seems to be very minimal but I will see what my new doctor has to say.  I am definitely not going to use the wait and watch approach after everything I have read and what others on discussion boards have had to say about their experiences.

I wish all of you well and continued good health.

My husband also saw an ENT

My husband also saw an ENT who is a head and neck cancer specialist- the best in Houston, where we live. We also followed the NCCN guidelines. Best of luck to you. Please keep us posted.

johnsonbl

To be clear...

None of us are physicians and in no way should you take information on this forum and imply that your provider is doing something incorrectly.

Even within the guidelines there is room for clinical judgement.  The further I dig into them for oral cancers of the anterior tongue if your depth of invasion is less than 2mm there is an option to watch and wait.

The takeaway is that there are very specific care guidelines for all cancer types...and they should be followed unless there is good reason to not follow them...but you should be aware of how your plan either follows or deviates from those pathways.

katlou

I'm sorry

I apologize that it seemed like I was implying my doctor was doing something incorrectly.  I will be more careful about how I word things from now on.  I realize that a lot of people read these posts and I don't want to post information that may be incorrect. 

Actually, I am quite sure that the depth of the invasion of my cancer was less than 2mm because the tissue depth that he removed for the biopsy was 2mm and that margin was clear.  So maybe this is why he is recommending the wait and watch approach.  I will see what the doctor at my second opinion has to say. 

Thank you for pointing this out to me, Brandon.  You actually made me feel a little better by posting about the 2mm depth.

johnsonbl

katlou said:

I'm sorry

I apologize that it seemed like I was implying my doctor was doing something incorrectly.  I will be more careful about how I word things from now on.  I realize that a lot of people read these posts and I don't want to post information that may be incorrect. 

Actually, I am quite sure that the depth of the invasion of my cancer was less than 2mm because the tissue depth that he removed for the biopsy was 2mm and that margin was clear.  So maybe this is why he is recommending the wait and watch approach.  I will see what the doctor at my second opinion has to say. 

Thank you for pointing this out to me, Brandon.  You actually made me feel a little better by posting about the 2mm depth.

No apologies necessary...

While we've all been through the ringer on here and certainly know alot about our diseases we aren't as smart as we think we are all the time! :-)  We also offer opinions and don't want to imply that we have the right answers.

Good luck and keep us updated...  We do like to help when we can. 

Brandon

CivilMatt

Welcome

Katlou,

Welcome to the  H&N forum, I am sorry that you are here, but I am glad you are trying to be thorough. You had a pathology report so I assume there is more to this story than simply an ENT trimming away the bad.

There have been a number of members who choose the wait and see approach with no big surprises.

There are other members who are never quite satisfied with their ENT or ONC and they seek out multiple opinions.

In the end, most members are cancer free with various levels of a happy new normal.

Good luck.

Matt

katlou

been a while since I posted

Hello,

Sorry it has been a while since I last posted.  I have been trying to get a second opinion and have been running into roadblocks.  The hospital where I am getting my second opinion was supposed to have their pathology dept. look at my biopsy slides, however, I have no results yet and when I looked into it I was told by the first hospital that the slides were sent a month ago but the second hospital can't seem to find them.  They were delivered but were lost somewhere between where they were signed for and the pathology lab.  Now, I can't get anyone to return my calls to give me an update.  I am not sure what to do at this point because I am not sure how another doctor can make a decision about treatment without being able to see these biopsy slides.  Has anyone had a similar situation and if so how did you move forward with treatment?  It has been two months since my biopsy and I am getting worried.

For all of you who have replied these past weeks thank you for your responses.

CivilMatt

time is a wasting

katlou,

You certainly can do without the hassle (especially now).

Tell the first hospital you want a complete copy of all scans and any and all lab work and you will be stopping by to pick it up.  They should comply.

If not, you will need to be the ‘squeaky wheel” until satisfied.

Matt

 

katlou

making progress

Thanks for your advice, Matt.  I started the "squeaky wheel" process yesterday and there may be some progress being made since I posted my last message.  I went over some heads and there has been some communication going on with me this afternoon.  I will keep you posted about this.  You are right when you say that nobody needs this hassle at a time like this.

katlou

update

I have an update regarding the status of my biopsy slides and diagnosis. 

After doing some investigating on my own and getting a couple of people involved to help me they found my biopsy slides and had the pathologist examine these slides that same day.  I found out something that could be helpful if this happens to anyone else.  Apparently if biopsy slides go missing and can't be found it is possible for them to cut tissue for more slides so it is not a total disaster if this happens.

As far as my diagnosis goes, it was confirmed that I have a superficial cancer on the underside of my tongue.  It is stage 1.  I was given a choice of just observing which is what my first ENT suggested or having a wide excision of 2 cm made around the biopsy site.  I chose to have the wide excision because the margins are very close.  I was told I probably would not need a neck dissection.  I was also told I would have this done on an outpatient basis and with no need for general anesthesia.  

This is the approach I was hoping for because I didn't think the initial excisional biopsy took enough tissue but after reading all of your posts about how the cancer had shown to spread to the lymph nodes after a few months I need to think about that.  

Anyway, again, thank you for all of your input on this.  If anyone has anything else they would like to add I would love to hear it.

katlou

new update

Hi all,

I heard from my second opinion doctor's office today and the ball is starting to roll.  I have an appointment on Friday to ask questions and set up a surgery date.  The plan is for a wide resection around the biopsy site with no neck dissection.  My biopsy report indicated that the tumor is 1.5 mm with a 0.6 mm depth.  My closest margin is 0.5 mm.  My doctor said I could either choose the observation approach or wide resection and I opted for wide resection to be safe.  I think 0.5 mm is too close for comfort.  I sort of feel comfortable with the treatment plan since the tumor seems to be so superficial although I do plan to get some other opinions just in case after this procedure is over.

Mainly I wanted to thank everyone for their input and support with my situation.  I realize that at this point that my situation is really minor compared to all/most of yours but I really appreciate your willingness to assist me along with this process. I know that I will be worried for years to come about recurrence or metastasis but this approach seems to be the best at this point.

I will keep you updated as to what is going on.  Also, I have become really concerned with some of your issues and will probably lurk on this site just to see how you all are doing.  All of you are in my thoughts and prayers and I wish you the best. 

CivilMatt

katlou said:

new update

Hi all,

I heard from my second opinion doctor's office today and the ball is starting to roll.  I have an appointment on Friday to ask questions and set up a surgery date.  The plan is for a wide resection around the biopsy site with no neck dissection.  My biopsy report indicated that the tumor is 1.5 mm with a 0.6 mm depth.  My closest margin is 0.5 mm.  My doctor said I could either choose the observation approach or wide resection and I opted for wide resection to be safe.  I think 0.5 mm is too close for comfort.  I sort of feel comfortable with the treatment plan since the tumor seems to be so superficial although I do plan to get some other opinions just in case after this procedure is over.

Mainly I wanted to thank everyone for their input and support with my situation.  I realize that at this point that my situation is really minor compared to all/most of yours but I really appreciate your willingness to assist me along with this process. I know that I will be worried for years to come about recurrence or metastasis but this approach seems to be the best at this point.

I will keep you updated as to what is going on.  Also, I have become really concerned with some of your issues and will probably lurk on this site just to see how you all are doing.  All of you are in my thoughts and prayers and I wish you the best. 

the ball is rolling

katlou,

Probably all of us had stage I (at some time) and we did not end up in treatment until stage II, III, or IV.  So, your situation may seem minor, but it is a position we all could have benefitted from immensely.  I do not like cancer, in fact I hate it, but consider your situation fortunate.

Hang in there.

Matt

katlou

Matt, 

Matt, 

Believe me I do consider myself fortunate that it was caught at an early stage.  I know what I am going through even with the early stage that I am at especially since it has taken so long to get things moving.  I can't even imagine what everyone who has been dealing with what happens at later stages is going through or has gone through.

katlou

had my surgery

Hi all,

I had my surgery on Monday which was a wide re-section of the area surrounding the biopsy area where my cancer was found on my tongue.  I am home and feeling quite well, not too much pain.  I am now awaiting the pathology report which will hopefully show no more cancer.  Thank you for all of your support.

Darkdancer333

Back of tongue cancer

Hi everyone!!! yesterday I was diagnosed with squamous carcinoma... back of the tongue. I had no symptoms except a swollen gland on the side of my neck. this was about 2cm. 

I only had this for about two weeks.. They said the primary tumor site is most likely at that right tongue base at about 2.5 cm. They said it appears to invade deeply into the posterior tongue musculature. 

Lungs, larynx, oropharynx, nasopharynx all appear normal. 

Chest and arm pits all normal........

When I talked to my primary care she classified it at a stage three because of the lymph node. She said bad news was suspected cancer, good news it was isolated no where else to be found. 

She did list the possibility of radiation, chemo and surgery were all a possibility. 

I have an appointment with the head and throat specialist this coming Tuesday. 

The first thing that ran through my head was how long do i have?? I did smoke for 35 years but have been cigarette free since 2009.... 

 

I thought this was caught at an early stage because my blood work three weeks ago detected nothing, I had no trouble swallowing, sore throat... etc... Just the lump in the neck.

Right now I am in limbo and hate the feeling of not knowing.. What was amazing is i had my cat scan yesterday and 90 minutes late my doctor called me. I wanted the no call

Anyway I figured i would introduce my self and look for a support group... 

Thx

again

 

 

grace2017

Hope

There is hope here and a lot of kind caregivers and survivors.  My husband was in your shoes in August when he found a lump and is now on the other side, recovering from treatment that ended in January.  I'd highly recommend a cancer center that has extra support such as dieticians and plenty of knowledge in the head and neck cancer treatment area.  This cancer can be tackled!  Is there someone who can go with you to your appointment?  It will really help to have another set of ears as well as someone taking notes and to help you make decisions.  Best of luck and prayers as you get more info and make a plan.  Once a plan is made, you may feel a little better and there won't be so many unknowns.  Hang in there!  Live life!