I was just diagnosed with tongue cancer and am scheduled for selective bilateral node dissection. I have been looking for before and after pictures to get an idea of what I am in for. Does anyone have a site I can visit with these kinds of pictures.

Welcome, Lucifen, to the place no one wants to be. I also have had tongue cancer with an upper neck dissection on just the left side. I don't have any before & after pictures to show you, but I can tell you that 7 months post surgery the biggest visual change to my face is swelling around my jawline and under my chin, the latter being from lymphedema, not the surgery. My incision was very neatly done and closed by the reconstructive surgeon and quite honestly, it hardly shows at all. The area is still quite numb but friends that haven't seen me since before my surgery say they don't notice any difference in my overall appearance.

- Margaret

I have had a left neck dissection too along with some tongue removal on both sides of it, I have never heard I look bad, but that I look very healthy and have good color. I know I have a couple of wrinkles where my neck was opened by surgery, But one big positive here, I am alive and still doing quite a few things. This is cancer and you just have to ignore the after affects and live life to its fullest.

I know what you mean. I have searched on the net and It's like a big secret (no one wants to show) I had a neck disection along
with my jaw surgery which resulted in a big scar where they cut
through the lip and down the chin.
There is a scar and it will settle down over time, I imagine, but it will always be there. I am just glad to be alive and healthy.
I just have to overlook it the best I can. I am a manager of
a busy center and don't even feel like I talk very good. I have
to talk slow and deliberate for no one to notice.
It can be done. It's good to be alive and be with my family and keep on going. Make up your mind to live and the rest comes with
you day by day. Sometimes minute by minute.
I wish you the best and am proud that you are trying to do your
homework ahead of time. That is what I did too, and still try to do.
Take care
Debbie
Debbie

I had radiation, Chemo and in Jan 08 left side ND. No one can even tell I had surgery. When I had my physical in August, my family doctor could not believe I even had cancer. For me, any scar, etc was the least of my worries. The surgery itself for me was a piece of cake, although I have some numbness and stiffness.

Main focus should be to beat the beast and try not to worry about the "little" things. Wishing you the best.

Lucifen,
I have sent you a PM of the lovely portrait my grandson did of me shortly after the surgery. Our theme song at that time when I still had a nasal tube was a fovorite of his "I Have an Alien Up My Nose." He says that now he is older (11), has a sketch pad and artist's crayons he will do a better job.
I sat for a portrait painting class for four weekly sessions and no one realized that had a scar. This was a year after my surgery and most of the class knew me as we had taken the same class together several times.
Good luck,
Malka

I had under-chin lymph node removal as part of my Free Flap tongue reconstruction. I now have thick, stiff scar tissue in my neck and the surgical scars are evident if I tilt my head back, however that is also the effect from the previous course of radiation treatment that I had in 2005-6.

Welcome to the site. It is a great place to vent and gather information. If you go to the home page and look under people/patient stories/Larry and read through the first occurance you will see pictures of Larry with a neck dissection. It actually looks worse than it is and outwardly heals pretty quick. The roughest part for me was loss of sensation, hyper sensitivity, and then a period of normalcy repeated over and over. It was like a series of waves hitting the beach where the effects gradually reduce over time. It was more irritating than painful.

The toughest parts about the time period when you first learn you have cancer is the waiting and the lack of information. Don't be afraid to ask any questions of anybody, whether it is your doctor, dentist, or this forum. My biggest complaint is the doctors assume you know what is going on. I don't know what happened with everybody else but my mind shut down both times I was told I have cancer. The only question I had was Why Me? After the initial shock wears off the real questions begin. Keep a pen and papaer handy for writeing them down.

Keep everybody informed of what you treatment plan is and how you are getting along. Good luck.

I love my neck dissection....makes me look slimmer..on that side! I told my surgeon that I wished he had done both sides for a good face lift! (J/K!)

You'll be fine....will be glad to send a pic by email if you wish. My scar does show, but I pay it no mind whatsoever. I am glad to be alive, and I was thrilled to have that neck dissection....proved as much as possible that my cancer hadn't spread, and it also removed the possible pathway for metastasis if indeed I did have a remaining cell or two. (That's my story and I'm sticking to it. I hope it's true!)

Hi I was exactly in your spot when I was told in begining of August of the surgery I was going to have. I was more worried about the feeding tube and the trach. But as it turns out I had really no worries cause after my surgery I don't remember much especially not concerning the tubes and the trach. As far as the scars and the marks left from surgery the neck dissection is not all that noticeable as most surgeons are very good and follow the already creases in your neck. For me the only problem was a slight infection in the incision and they believed that was caused due to diabeties. I really don't think you have anything to worry about but I get the feeling it is not a worry you were like me just want to know. I think there are some people on the site that have pictures attached to their bloggs but not sure how to get to them again...I have erased the links...I don't know what protocol is and don't want to cross any lines but I do know that the blog helped visualize it for me.

Like I said I don't think you are worried about what you will look like just what to expect...I showed my daughter the pictures so she wouldn't be surprised when she saw me in hospital. Hopefully someone with pictures will answer you

I have pictures pretty much from all along on my blog - not too many from my stay in the hospital but there's a few during treatment and after as well up to now. The link is in my profile.

OH! And I got to see pictures that were taken DURING my surgery but I do not have them - my snappy happy plastic surgeon has them. I need to ask him for copies! They were awesome!

Thanks Stephanie yours was the blog I was talking about...you camera happy wonderful snapshot taker...So how goes things haven't talked in a long time you must be busy living Isn't that wonderful!!!!!!!!!!!

Malka,

I Have An Alien Up My Nose?? I wish I'd known about that when I had my nasal tube, cuz that is hilarious!

- Margaret

darkeyedlady0
Yes, you are right, not worried what I will look like, just want to be prepared - I hate surprises! I am diabetic like you and already had an infection from the tongue biopsy so will watch my neck incisions like a hawk. Thanks for the advice.

We have different thoughts on the infection...one doctor thought diabeties, another thought due to fat cells, and I myself thought cause I touched it too much when trying to keep my trach closed to talk...I think the doctors and the nurses really kept an eye on my diabeties...I am insulin dependant not sure about you I was so afraid of being low and not being able to eat to adjust it but I really had nothing to worry about. When I went back for a check up a week after discharge the doctor was sure I was smoking again cause my incision looked like I had had radiation then he realized I was diabetic and only quit a day before surgery. He apolgized and now tomorrow I go to see him again and he is going to be sooo pleased I know I am!!! If your doctors are like mine you will be just fine!!!! Just be prepared to get a lot of rest!!

Oh yeah and I forgot a bit of advise it is better for your healing process to keep your sugars lower...you probably knew this but I didn't realize how much it affected the healing process..

Malka,
That's funny, I called the growth on my tongue the alien, told everyone I was having the alien removed! Didn't know how true it was at the time because a biopsy 5 months earlier was benign - grr.

I'll take all the advice I can get, don't worry about thinking it's something I already know, reinforcement never hurts. I'm a type 2 diabetic, just started on Lantus insulin in July 2008, still taking oral meds too though. A1C came down a whole point since starting insulin though - yippee!

Well we all know to send to get Stephanie for Christmas. As for me and pics, It was bad enough to look in the mirror. I will look thru pics my kids took wnem they came to visit and if I have any, I will email them to you.

Wait, what are you sending me for Christmas Jim?!?!?

Dear Lucinda,
There is a big diffenence between the hours and days after surgery and the weeks and months after surgery. You can prepare your family for the hours after surgery by telling them that you will most likely be gauze wrapped, drainage tubes everywhere, hooked up to a bunch of monitors, and FACE SWOLLEN like crazy. [I almost fainted the 1st time I saw my husband in the recovery room after surgery, but it gets better day by day.] John came home with staples in his neck from ear to ear. We just had to be asiduous about keeping the area clean and when the staples were out there was no visible scaring. You won't be "pretty" the 1st few weeks, but you will get back to normal. If you really want a "recovery room" picture, I think I have one, but it may not be the best thing for you to look at. Amy in the Ozarks

My husband kept saying I was finding out too much information though reading and looking and thought I was scaring myself...as it turned out it didn't matter to me cause I never saw myself with tubes and if I did I don't remember anything...So to be prepared for me didn't matter...cause I didn't see the worst of it. Here I they used stitches and staples in my wrist.

Lantus is a great insulin btw you probably know that. It has helped my husband who is a brittle diabetic get better control...

I wish I had more pictures of me early on, but I was in ICU for a week because I had pneumonia after my surgery and you can't take pictures in ICU. I do know that my neck was all taped up at first covering my incision so you couldn't really see it and I had three "drains" and a trach. My neck had a bagillion staples in it under the tape. I do have pictures of the staples (that aren't on the blog if you want to see them) and a picture of me with the trach in. I looked rough. As far as my arm, apparently I had something different than everyone else. I had integra put down on my wrist and a wound vac put over that, and I had the vac for about a month from my surgery and then I had a second surgery for my skin graft to be put down and I had the wound vac for another week. It is supposed to speed up the healing. I have pictures of my wrist pre and post skin graft on my blog as well if you want to know what that may look like. They are probably my favorite pictures from the whole thing, a little gross, but awesome nonetheless.

Yeah, I just wanted to know to prepare my kids for what they'll be seeing. My oldest daughter is getting married in January and I'm afraid she'll freak out when she sees me. Tried to convince her not to come home from school for the surgery but she's insisting. It's good to have the pictures of a few weeks after, that should be reassuring to her.
Thanks

You can see my final result (and some pictures of a younger man and someone right after surgery) at my story in the people section of the web site. http://www.oralcancerfoundation.org/about/brianhill.htm

Wow, you look great, that's very reassuring.
Intersting to read about the screening at dental exams, I got them regularly and it was my dentist who recommended I see an oral surgeon for the lesion on my tongue, but this thing had come up rather suddenly in between my twice yearly appointments, and then went from benign to invasive cancer in a matter of months before my next exam. That's a little frightening.

Stephanie,, send me those pics. my email is available to all. I'm still thinking about what to send you for Christmas beside a Merry Chritmas and a Happy Ne Year . LOL everyone send that..

If you go to youtube.com and search radical neck dissection, total glossectomy and such...you'll see operations...careful very graphic

Thank you Ray, I did find some surgical pictures when searching, just wanted to see some after pictures. Yes, very graphic. Going for surgery tomorrw, will find out about lymph nodes on Monday or Tuesday. Thanks to everyone for your help!

All the very best for tomorrow Lucinda.
I too looked at the youtube video's briefly and they are very graphic as Ray says.
The good thing is that you will not see any of this. Like many here I healed very well and most people would hardly notice the slight scaring on the neck.
Maybe you might like to keep your own photographic history of your recovery process? I have lot's of photo's starting 2 weeks after surgery of both wrist,thigh,neck but mostly ones I took of my own mouth.
Again all the very best and when able let us know how you are going.

My neck looked funny for awhile but it has all faded now 1.5 years later. I had some reconstructiveplastic surgery this summer to help with the uneveness of my face and to get rid of the trach scar which botherred me but I could have lived with it. My neck looks uneven but there isn't much they can do abotu that- It takes awhile but the body heals itself nicely. Its important to make sure you eat well and get lots of nourishment afterwards because your skin will heal much much better.

I can send you picsof before(if Ic an find them) and how I look now. Let me know

Kate

Hi all,
today is 2nd postop day, I'm having my husband take pictures, but he thinks it's a little wierd. So far I seem to be recovering well. The drainage tubes are still active so are waiting until tomorrow to pull those. I'm not quite as swollen as I thought I'd be, I think all the warnings from people had me expecting worse, which is good in my mind! Already got the pathology from then tongue and left nodes and those were all clear! Just waiting for the right nodes to come back, so keep praying! Thanks for the support, this is a great site!
Lucinda

Wow impressive I was so out of it with medication for a week after surgery that this is impressive two days and being lucid enough to be aware of what is happening is amazing and to be able to make posts Wow is all I can say. Cept maybe keep up the good work!!!

Congrats on getting the all clear so far! I remember all to well having the drainage tubes pulled - yuck! It felt like the tubes were 10 miles long and they just kept pulling them out! I had one out a day. Glad to hear you are doing so well!

How wonderful that you are already posting so soon Lucinda.
Great news that all is clear so far and fingers crossed that the news is just as good for the rest of the tests.
Congratulations
Gabriele

OK - You must be relieved to be on on the way to being a non-bionic person. I am hoping that you have a good report on the other side.

Well, not so good news on the right side, the regular stains didn't show any obvious cancer, but evidently didn't look quite normal either, so some special IHS stains were done and these were positive in all 3 nodes looked at, two level 1 nodes and 1 level 2 nodes. So the surgeon is suggesting we treat it as if it were negative since that's what it would be if the special stains hadn't been done. But I'm not comfortable with that, since the special stains were done and they were positive. So I guess we are off to get some different opinions from different people.
Lucinda

Lucifen,

Where are you being seen? Most, if not all, CCC's have a committee approach to evaluating test results which puts many minds into the equation which is usually better than just one opinion.

My latest cancer surgeon (ENT, Oral Surgeon and Chair of the Department of Otolaryngology/Head and Neck Surgery at UWMC-CCC, aka Dr Haakenslash) called lymph nodes "collection points for cancer".

Pete,
I have always wondered, if the cancer doesn't collect in the lymph nodes, where else does it go?

I imagine it goes to OTHER lymph nodes -- They don't try to take them all out, just the ones likely to be compromised by the cancer site(s) -- All I know is basically what I'm told or read through OCF.

Of course, Dr Haakenslash and his team of Cutthroats may have been biased because he apparently needed the former node sites to tie in the blood vessels for my free flap <grinz>.

Most cancers will go to (or metastasize to) the lymph nodes that drain the site where the original cancer is located first. The cancers can also go through the blood stream to farther locations in the body, but will usually show up in the lymph nodes first. Which is why the lymph nodes are looked at first, if they are negative then there is very little chance the cancer spread anywhere else. That's why I'm not comforatable with doing nothing if there's the slightest sign of it already in the lymph nodes.
I'm being seen at Aurora St. Lukes Medical Center in Milwaukee, WI. But we've been in contact with a few medical professionals across the country. In case you didn't look at my profile, I am an OBGYN dr and my husband is in general Internal Medicine, so we have some resources to tap, and I have trouble not answering medical type questions, although this is certainly not my specialy. And this is such an uncommon cancer that we had not really encountered it before. Although I did have one patient with it who was having trouble getting her doctors to pay attention to her. Now I kind of understand why, and am glad I encouraged her to keep asking and seeing different drs until she felt comfortable with the answers she was getting. I'll keep you all posted with my progress as things play out over the next few weeks. I think I need to heal from my surgery before anything else too invasive should be done, also my oldest daughter is getting married on Jan 17, 2009, so want to put off anything that will interfere with her day. Thanks for all the support.
Lucinda

The first and most obvious answer to this is relatively simple. What is the purpose of the lymph system and the nodes that it contains?

Humans have approximately 500-600 lymph nodes distributed throughout the body, with clusters found in the underarms, groin, neck, chest, and abdomen. They act as filters or traps for foreign particles and contain white blood cells. Thus they are important component in the proper functioning of the overall immune system, and themselves part of that system.

When a lymphocyte recognizes an antigen which has responded to an immune system threat, B cells become activated and migrate to germinal centers. When antibody-producing plasma cells are formed, they migrate to the medullary cords. Stimulation of the lymphocytes by antigens can accelerate the migration process to about 10 times normal, and in that migration to the collection points of the nodes, result in characteristic swelling of the lymph nodes.

They are in the simples terms, part of a group of mechanisms that draw pathologies, and the detritus of our immune system battles, out of our bodies. Most do not realize this, but this entire lymphatic system is constantly filtering and removing the negative from us. Even the tonsils, now so often a place of primary/original location for SCC of the posterior mouth, are themselves part of this lymph system (this includes lingual tonsils and tonsilar tissue on the base of the tongue). It is logical for the detritus of the battle between our immune systems and pathogens which it protects us from, even common bacterial infections etc., to drain into the lymph system for further neutralization and removal from our bodies, enlarging the nodes in the process. The cervical nodes of the neck are the closest location for oral cancer to metastasize to because it is their job to be collecting this cast off material in the first place, as the immune system response in our mouths produces by-products that need to be eliminated.

In another post, some asked what might a primarily malignancy do besides this, and the answers are primarily two. One is that it might stay localized and invade more deeply into the nearby anatomical structures, into muscle or osseous tissues. Though in the long run detritus from this process will likely still end up in the cervical nodes and in extreme cases drain from the body through open fistulas. If the primary disease is near major circulatory system components, it may become removed from the loco-regional area via the blood, transported to other vital organs, which is of course how oral cancer kills us, usually not in our mouths. Primary means of metastasis of the disease from our oral environment is either the lymphatic system or the circulatory system which are of course each connected to the rest of our bodies. Single or multiple major vital organ malignant involvement is end stage oral cancer development.

All this of course an over simplification of what is a very sophisticated system, and entire books are written on how all this operates.

I think I need to go to med school if I am going to continue to post here. LOL

Just kidding but I do find all the knowlegable posts very enlightening but it doesn't help me with the tax laws one bit.

David,

The only help for the tax laws is another Boston tea party.
Isn't today about being thankful that we live in the land of the free and the brave? We have to be brave because nothing is free.
We had a CPA who intended to write a book about the IRS. he only got as far as the title: "My Hand in Your Pocket."

Lucinda,
I hope that you get anwers soon. The explanation from your doctor seems strange. Why ignore something because if the particular test had not been done it wouldn't have shown up?

Well I can't figure out how to do my own taxes, even with Turbo tax asking me the questions, nor with all the new air pollution equipment attached to my car engine figure out how to tune it up - (something I always did myself as a younger guy). I guess we live in a very specialized world. But never consider smarts in one area to equate to intelligence in generalg.... when you consider all the people and professionals that participate in general private aviation, doctors still have the highest rates of aircraft accidents when flying their own planes. Pilot error is still the largest category of accident cause, not mechanical failure.

I lived in Germany for six years and when I came back to the states I was telling everyone what a GREAT tax system we had, inexpensive and simple!

The German taxes are so complicated that either your employer or the German version of a CPA does them -- No one that I ever met did their own, not even the owner of a tax franchise doing US taxes for gummint people. The highest tax bracket in the system was 65%!! Almost double our current high! In addition, Germans paid a national sales tax of 15%!!

A German local postage stamp cost MORE than a US overseas stamp.

BTW, did you know Canadians have to pay tax when they buy postage stamps?

Talked to my dr today during the stitch removal and got a better explanation. Since the cells were well-encapsulated, there are no good studies showing that rad tx improves survival. However he did encourage me to get more opinions as he said the rad oncologist he talked to was admittedly very conservative. So he is going to talk to a different one at the same hospital and I am probably going to see at least one, and maybe 2 from Milwaukee and Madison. He was very open to getting more opinions, as any dr should be. He also agreed with me that the rad tx would not hurt my chances of survival, just no proof that it would help, so as long as I am willing to put up with the side effects, it was my choice.

Well, I got back last night after seeing specialist at University of Chicago Medical Center, and their opinions were a lot different. They say I have a Stage IV cancer and are recommending both Chemo and IMRT. I'm pretty stunned right now, this has gone from being no big deal, let's just watch to being the worst case scenario. Obviously I'm going to go with the aggressive treatment, but right now I'm kind of numb and depressed.

It's a scary thing, isn't it? But it can all be dealt with by knowledge and support from others -- The knowledge is here and there's also a LOT of support.

Dealing with the depression is part of what a good medical team can do for you -- The numbness will pass as you adjust to your new "normal".

Read a lot on this forum about the things to expect and the steps to take during treatment and recovery to lessen the permanent effects (like getting enough nourishment, continuing to swallow and exercising your jaw opening).

Lucifen,

There are a lot of us Stage IV's that did quite well with the Tx and with multiple mets to the nodes I thought was an automatic IV so I'm surprised that you weren't told that right off the bat.

In my recollection of staging, multiple lymph nodes, even if on only one side, put in in the Stage IV arena. Mine was also a 2cm primarty, although at BOT. I also had bilateral ND, with 1 obvious node and another microsocpically suggestive of involvement, both on the right.

17 months after the end of treatment, I am doing pretty much whatever I want, with some limitations from the ND and radiation fibrosis, but more annoyances than anything. Just had my most recent follow-up with the RO, and everything looks good. So the key is to get yourself to the best cancer facility you can, do EXACTLY what the doctors tell you to do, and stay active and positive.

We have all been there, done that, got the T-Shirt, so never be afraid to ask any question or vent any feelings.

My RO told me size alone made mine a stage III and if it was in the lymph nodes it would have been a stage IV.

There's kind of a crossover in staging between the T and the N when it's spread to the lymph nodes.

http://www.oralcancerfoundation.org/facts/stages_cancer.htm

I think the disconnect was because of some vague language in the pathology report, it said there were "atypical cells" seen in the initial routine stains and they were only identified as cancerous with the special immunohisto stain. I guess the first surgeon thought that meant the nodes were negative by routine staining and that was how it should be staged. Then I saw an RO in town and he called the pathologist because of the vague wording and the pathologist said they did see cancerous cells on the routine stain and it was just confirmed with the IHS. So then I was recommended to get IMRT. The medical oncologist we contacted in town said he really doesn't do head and neck cancers and told us to go to U of Chicago to Dr Vokes who I hear is one of the best. Dr Vokes was very straight-forward and laid everything on the line. He was actually the first person to tell me what stage it was, actually I think it was the first time I asked the stage. Looking back I can see I have really been in a stage of denial for the past 5 weeks. But it just seems that every person I see the story gets worse and worse.

What was good was that other than the facts of how far along this cancer is, I was pretty much prepared for what they told me to expect as far as side effects and what would be involved with the treatment from reading this website. You guys really prepped me well for that aspect of the visit. My husband has been resistant to reading anything on the web other than sites for medical professionals, and has critisized me for reading too much "nonprofessional" stuff. He's afraid I'm going to get freaked out by anecdotal stories of worst case scenarios. But I think it is more helpful to hear from people who have actually experienced these things than to hear from drs who talk about dry mouth, mucositis, etc, but don't really describe what these things actually feel like. Of course most of them have never experienced most of these things so they are just passing on information from what patients have told them and what they read.

So I thank you all for the excellent info and will keep up with this site as I progress along for more good suggestions.

I know what you mean. My GF felt that I did too much research and that the site made me more nervous. It was the other way around for me, this site helped me more then any other out on the World Wide Web and helped me understand what the doctors were telling me. I don't believe I would be as mentally secure as I am now if it wasn't for the people here on OCF. I cannot say enough thanks to my family, GF, friends, doctors and my OCF family.

It may be nice and helpful to read the medical stuf, presuming one can actually understand it, of course, but I find it darned helpful to get advice from actual victims on what to expect, what to guard against and some Cyber-Support!

BTW, no one actually told me what stage it was until I asked my EMT.

I just found out I have Stage IV cancer also and am having a neck dissection October 2nd. Been reading on here for a while because I was afraid it would show up cancer even though the ENT kept telling me he didn't think it was anything abnormal, just a swollen lymph node. He did a needle biopsy almost reluctantly and then still didn't believe the reading and sent me for a PET scan before he decided I really did have cancer.

I went from "We got it all and no rads or chemo needed to you need rads and chemo plus" I agree it is a shocker, but a necessary one. Yes it will take a lot longer to heal and you will be miserable if you let it happen The best I have found is to remain upbeat and fake it to others if you have to, but keep a good mental outlook and be positive. Hell, I even had to lose my teeth and get rad seed implants that seem to never heal any, but I am alive and as mouthy as usually I was. LOL Yes I get spells where I think , is this worth it? Then I think , do I want to see this lousy rain and hear that thunder anymore? Heck yes I do just like the beautiful sunny mornings and grandkids , the rest of the family and my friends, Yep, it's worth every ounce of the pain and I will continue to fight for as many years as possible. Jim I have you in my prayers and best wishes.

OOPS,, JIM is me not you. LOL sorry about that.

Bloop,
Are you being treated at a major Cancer Center such as the Mayo Clinic in Phoenix? If not you should consider being seen by one - at least for a second opinion and their review of your proposed treatment plan, facility and doctors.

I recommend you ask questions now about your treatment plan including the upcoming ND. Is it necessary and why, what kind of ND are they planning, probable short and long term side effects, etc...

These days many people having chemo/radiation can avoid needing a ND. The chemo can adequately shrink the cancerous lymph nodes so that the radiation is effective.

Other times a ND might be required due to the size or location of the affected node(s) and need to assess advanced staging for treatment planning (such as extra-capsular invasive spread), but a 'Selective' ND where only cancerous nodes and surrounding tissues are excised is often adequate with less side effects.

Tell us more about your cancer like where is your Primary? Are/were you a tobacco user? Check out your cancer's possible link to HPV.

Before I would allow a ND I would get other opinions and preferably from a CCC.

Bloop,
I am a little confused as this is your 2nd post.
It appears that you started the first one in June under Indroduce Yourself/New Patient. You had lot's of replys there including one from me.
In the June post you say that a biopsy confirmed SCC.
The reason for my confusion is wondering what has happened between June and September

I have recently had a bilateral neck dissection. I post all pictures and stories on blog www.remissionorbust.blogspot.com

Good luck!

Not much of anything happened between June and September because the ENT ignored me when I said I had a lump in my neck. Then my primary sent me for an ultrasound and I took my time getting it because I was getting a mammogram too and I had to wait three weeks so I just did them together. The ultrasound came back bad so I called the ENT back and said, "Remember the lump you said was nothing. Well an ultrasound says it's something." So he had me come back and did a needle biopsy and I have now had a neck dissection - October 2nd. I now have an appt. Nov. 5th with both a radiation oncologist and a chemo oncologist. I will need 7 weeks of chemo and radiation from what I've heard.

I am assuming the tumor under my tongue is the primary cancer. I had a PET scan and no other cancer showed up anywhere in my body. But that tumor spread to my lymph nodes and is apparently very aggressive now. I feel like if I had never had that tumor removed it might have stayed dormant for years. I did smoke, but I quit 10 years ago.

Bloop. it sounds as if you and your Drs took this too casually. It's time to fight this stuff by being very serious as it should have been from day one. I have youin my prayers and am sending you a couple of my angels to keep you alert to what is going on. Good luck and remember this is life or death. If need be, change ENTs. Jim

Bloop, this is why we have to be our own strong advocates. I'm assuming you won't need that ENT anymore because you're being promoted to dealing with the oncologists, head and neck surgeons and R.O.
I think we've all had to learn the hard way not to accept"it's nothing" it's not cancer" even though scans, symptoms and swollen lymph nodes are present.

Right now you just need to recover and heal from surgery and prepare yourself for the next step. Buff up nutritionally and get some extra calories on board. I found the Magic Bullet, a tiny but powerful blender to be my life saver in making smoothies and other foods. I blended everything in sight in that gadget and it comes with plastic containers with lids so you can store the potions. I think it cost $50 but well worth it.
( P.S. I don't work for the company)
Good luck in the weeks ahead,
Nancy

Nancy, someone had posted pictures on here a few months ago. I forget who it was but the pictures wer very graphic and showed everything and were good. Go thru the files and I am sure you will find them.

Shaylynn, your blog is fantastic. Man, I didn't realize anyone as young as you would get oral cancer. You sure seem to be dealing with it better than I can even imagine doing. I just had a right side neck dissection and it went well. I am freaking just thinking about getting that mask made even before I start radiation. I'm pretty chlostrophobic. But I sure hope I can be as brave as you and others here are.