Hello,
My name is Kimberly. I am 49. I have a husband of 19 years and a teen daughter. I am scared. My tongue swelled up last week, went to a dr in nova while on a vacation / business trip with my husband. They just called me today, I was told it was superficial cancer. That was all he could say.
My daughter and I are alone here. My hubby is back in va working. I can't seem to sleep,eat or breathe. I quit smoking 20 years ago, don't drink and this came as a shock.
I honestly thought it was a food allergy. My dr here is sending me to a dr at upmc on Thursday. They said it's best to get another opinion. But the dr in va did two tests and sent them to 2 different labs.
Anyone in Pittsburgh? Can you recommend a family support group?
Thanks for reading my story.
Kimberly ann
KimberlyAnn, sorry to hear about your diagnosis. I'm sure you are quite stunned as most of us are when we hear the words, "you have cancer". The wide array of emotions can be overwhelming. Have you thought about seeking out an oncology psychiatrist as opposed to a group setting? I only ask this because they are trained to help process the barrage of emotions at initial diagnosis, especially. Also, they can help your daughter get past the initial shock.
This is SO hard but try not to worry. The unknown is so very scary because our minds naturally fill in the blanks. What you have been told so far is certainly concerning but it sounds like you are taking the proper steps. The other thing I remember is that it seemed like things were moving too slowly. Looking back at my experience and the shared experiences with the 6 people I have walked through treatment with, things just take time. At every step in this thing, every doc and every tech is doing their best to not make a mistake and that takes time. Find out what you are up against, your options and then act on that.
This board is a great place to vent, get advice and encouragement. Prayers headed your way.
Hi there... that was me three years ago. I have never smoked, I don't drink and have never done drugs. I thought mine was either irritation from a capped molar or allergies. Regardless, I heard the same words. And cancer - superficial or not - is scary. Can I recommend you be seen by an oral cancer specialist - ENT at a reputable CCC? I know superficial seems unimportant - but if not handled properly it could become a bigger issue than it needs to be.
I don't want to scare you further but knowledge is power so forewarned is forearmed when it comes to your health. Superficial cancers can still spread. The next steps should be a head, neck and chest CT, and physical examination of the nodes in your neck. It's highly unlikely if it's superficial that it has spread that far, however it is better to be safe than sorry.
This cancer can seed to the nodes and be undetected by a scan when they are still microscopic, so if it is determined that a small surgery is all you need to remove the cancer and surrounding tissue, that's great. But do keep an eye on your neck just in case something pops up.
Hugs and welcome... and you will get through this.
Hi KimberlyAnn,
Welcome to OCF! Very sorry you joined the group that nobody wants to be in.
I was 46 when I heard the news and had no risk factors. I was stage 1, and although I had a few bumps in the road, I'm still her 9 years later. Finding a local support for just head and neck cancer is hard. Some hospitals have them, but not too many. Seeking an oncology psychiatrist is a good idea (I wish I had). The American Cancer Society or the Cancer Support Community may have some general cancer support groups in your area. I have found that the support of the OCF forum is fantastic - it puts you in touch with folks all over the world you have already been in your shoes, plus it is available 24x7. We are here to help you and your family get through this.
UPMC is one of the top rated hospital for head and neck cancer and I'm glad to hear you are going there this week. In addition to the OCF Support Forum, the OCF main website pages have a lot of information on OC - read the info and make a list of questions to ask your doctor. I hope you have someone to go with you - have them take notes.
Wishing you the best!
I was diagnosed December 2012 and had most of my upper palate removed and now I have a hole directly into the sinus. I was clear nodes and did have radiation. I came through it all very well. I felt the same when I found out. I did get some Xanax to get me through until my surgery. I have not taken it for over a year, however, I was grateful when I had it when I needed it most. Some big decisions need to be made. I still cry sometimes when I allow myself to worry but I focus on living the best I can. Get through the treatment - that is step one. Start there and come back here for step 2 - Living with it.
Welcome to OCF Kimberley. This is the best place on earth to seek advice and information about oral cancers. Get as much information from your doctors and read here a lot so you can ask all the right questions.
Good luck,
Don
Kimberly, welcome to our family. You have found the very best online support group to help you get thru everything you are facing. We will help you with correct medical info and support.
Its never a bad idea to get a second opinion. When you decide on a treatment center, ask what support they offer. You should be able to easily join some family groups there.
Read and educate yourself about OC. An informed patient is a strong advocate for themselves. Knowledge is power. Too often the little things dont get discussed unless you ask about them.
Now is the time to focus on being proactive and doing things to prepare yourself and your family for your treatments. Eat everything you can, all your favorites. Dont be concerned about calories too much or weight gain. Its ok to gain a few pounds, you will probably be like the rest of us and lose whatever you gained. Depending on how you are treated, your sense of taste and/or swallowing and eating capabilities may be compromised for weeks, possibly a few months.
Get a full blood count done, make sure to have the doc include thyroid counts as well.
Visit your dentist and get a complete, thorough check up.
When you talk to friends and relatives about your illness and they offer their help, make sure to tell them you will let them know what they can do when the time comes. Write down their contact info in a notebook or address book. If the time comes where you need a hand, dont hesitate to call on your list of helpers. People really do want to pitch in but often they just dont know what to do to help. When you need help even for little things like picking your child up from school, grabbing a few items from the grocery store or even doing a load of laundry dont be afraid to ask for help. Thats one area I really struggled with! I was always overly independent so for me to ask people for help it was very out of character and took alot of courage. After doing it a couple times like anything it gets easier.
Most of all, try not to overdo it with worrying. I know its not easy to avoid worrying. But try to focus on the big picture, it is not helpful at all. When a patient worries excessively it causes them to get stressed which is not healthy or helpful. Its a challenge for most of us to get a handle on worrying, with alot of practice it can be done. I know you are going thru a wide range of emotions right now. Always remember here at OCF, its ok to vent or let off some steam. We completely understand everything you are going thru.
Best wishes with everything!
PS.... Heatherly, welcome to our group. Please make an Introductory post so we can all properly welcome you.
See if you have a local SPOHNC chapter. They helped me greatly. Btw, that's Support for People with Oral, Head and Neck Cancers.
Kimberly,
Just in this thread you've gotten a lot of information and I'm sure you are feeling overwhelmed.
Based on your comments in your post the doctor you saw last week classified it as superficial. Which I take it to mean that it was on the surface of your tongue most likely stage 1. Did he confirm this with a biopsy or some other type of test?
As was stated above, the next step would be to have a scan to see if it has spread. This will probably be a CT scan. UMPC will probably want the actual biopsy slides to do there own analysis. Based on these results the doctor(s) will determine a treatment plan.
If it is stage 1 without spread, your treatment could be surgery alone. Part of the tongue plus a possible neck dissection to removed some lymph nodes in the neck. OC typically spreads to the lymph nodes first, so a lot of surgeons will recommend the neck dissection to determine if it has spread even if the CT scan doesn't show this. Some doctors recommend "throwing the book at it" during your initial treatment to minimize the chance of recurrence.
Radiation with or without chemo may be recommended depending what shows up on any additional tests and what they find during surgery. A lot of people with OC end up with radiation and chemo because their cancer was found at a more advanced stage. Some of the advice you were given so far has to do if they recommend radiation.
I've had 4 surgeries on my tongue and radiation about 8 months after my initial surgery. My cancer was found early and my initial treatment plan was surgery on my tongue only (no neck dissection). I went for a 2nd opinion after surgery #1, and that doctor felt that more of my tongue should have removed plus he wanted to do a neck dissection. Needless to say hearing this after already having surgery was extremely upsetting. To top it off when I had sent the surgery biopsy slides to be reviewed, they found out that the original pathologist botched the results. He gave me an all clear and there was actually cancer at the margin. I was now a complete basket case hearing this. I went for a few additional opinions, multiple scans and other tests, and the good news was they did not find any signs of cancer. So they left it up to be to have radiation or pursue "watchful waiting" meaning keep an eye on the area with frequent doctor visits and tests.
The hospital where I had surgery #1 was a small local hospital not a major cancer center. When I had a recurrence I sought treatment at Johns Hopkins in Baltimore, which is the best or one of the best H&N cancer centers in the USA.
One thing they did during my surgeries at Hopkins was using a blue dye and frozen sections. The blue dye (can't recall the official name) helps identify areas of concern. Frozen sections are a type of biopsy that is done during surgery - it is a quick biopsy, so not as accurate as a full biopsy, but it increases the odds that they will get it all during the surgery.
I know a number of OC survivors whose only treatment was surgery. That is why early detection is so important. Radiation is often necessary when found later and radiation IMHO is by far harder to recover from and has more long term issues.
Right now, take one step at a time. Get prepared for your next doctor appointment by doing research and making a list of questions to ask.
Hi KimberlyAnn,
So sorry you have to join us here but to echo what others have said this truly is the best place to get information and solace from people who have dealt with similar issues.
I was diagnosed on 3/24/14 and had absolutely no risk factors so I know it's quite a shock, especially when it's so new. The people here have given me wonderful advice and I'd like to pass some on to you. Take one step at a time. It's scary for everyone but people care and are here to help.
Good luck with everything!
Thank you guys, your stories are sad, and helpful and hopeful to me. I found out it's not superficial and it spread to my lymph nodes. I have a cat scan ordered for Thursday at 8 and then we meet our dr an hour later.
He wants to check my neck and lungs. I had bronchi soaps and asthma back in January and was on steroids for weeks. My asthma is better. The singular I was taking have me hives so I stop taking that. I breathe very well and had no issues no far.
I visited my pc doctor and he just reassured me I was in good hands. I been praying a lot and it's the only thing that gives me any sense of peace. I was told it might be stage one or two. But from what I read is that of you need log nodes removed it's stage 3. So I sit and wonder, why did my eNt dr say that to me?
He said we may just be able to cut out the cancer, left side oft tongue, savaroma type he said, most common kind, and maybe do radio/chemo.
Do they sugar coat things? Beginning to wonder here.
Anyhow, I find out everything on Thursday morning. I starting to get anxiety feelings which scare me cause I have been to the er a lot in the last fir full blown anxiety attacks.
I been told it's 5mm or 1/5 of an inch.
Anyhow, thank you all for posting, when I am grounded here, I can get on my phone puter and respond more and in detail in an individual way.
Right now, I am trying to stay offline as much as possible, to much info is not helping me!
Kimberly
If it has spread to our nodes it's the number of nodes that matters. I mean this when it comes to determining staging. It goes by size and number of nodes involved. It's a small size, but if there is more than one node involved then that would make you a stage three. I am not sure where you live or where you are being treated but your drs approach seems rather cavalier. I would make sure that he or she is very experienced at dealing with oral cancer, and very good at what they do. I say this because based on what you are saying - small sized primary cancer - but nodal involvement - indicates it might be an aggressive cancer. If this is the case more is better than not enough in terms of treatment. Do I think he is sugar coating? I don't know, it could be that - maybe he trying to minimize your fear by saying what he has, however more concerning would be the possibility that he's not overly experienced with this cancer and believes (un realistically) that he can simply cut it out. This is a recipe for disaster.
This cancer can be crazy aggressive, I've seen people with a T1 cancer die from it and a stage 3 or 4 survive. These results are based on a variety of things - individual health/lifestyle/age, genetics, aggressiveness of the cancer and medical care (how they have been treated, and by whom)
If I were you I would go to a cancer facility - and see a top ENT who deals primarily with oral cancer. This will give you the best chance at getting through this. Hugs and welcome... And so sorry you have to be here. Hugs
Kimberly,
I felt like that too when I first started this journey. Granted it's only been about two weeks. Information can make you anxious, especially when it is so much so soon, but it can also be helpful in certain ways. Do what you think is best for you.
From what I have been told, people usually recommend node removal if the tumor is at the 5mm or deeper mark. Originally, mine was only said to be invasive at a depth of 1 mm but when I got my MRI it showed a depth of 4mm. Now, some of this could have been inflammation still from the initial biopsy. Two of the doctors said I did not necessarily need a neck dissection, while three at the CCC suggested that I get some nodes removed just to make sure. They tend to use a more aggressive approach to ensure that the risk of recurrence is less. I had a PET and a CT scan. Both came back normal except for one node that measured 8mm (10mm is considered suspicious based on pathology reports) and so I opted to go ahead and have it done as a precaution mainly from the advice of the team of doctors and many other members here. This has nothing to do with staging. My advice about that would be to not get too caught up in it. I was very caught up in that at first but my surgeon told me that it is simply a tool used for them to quickly explain to other doctors what the situation is for each patient. It does not necessarily give a patient any valuable information.
I know this is a lot to handle but you can do this. If you need help, we are here.
I was told that lymph nodes would have to be removed, and that I wa in stage or 2, after the biopsy he confirmed that. He is one if the top specialists in Pittsburgh at upmc, so I am lost. Either he is correct or hasn't been truthful. I still must get an car scan to see if my neck and it lungs are affected. I meet him on Thursday to discuss it all, and what he will do.
He said I had the most common kind of cancer, sacqerous type, not sure how to spell that. My left side of my tongue has a cancer legion that is 5mm.
Squamous Cell Carcinoma, SCC, is the most common type in head and neck cancer. Anything with lymph node involvement is stage 3 or 4. It can be a small tumor, T1 or T2 in the TNM staging system, T tumor, N nodes, M distant metastases, which is used more often by the medical community than stages I-IV of disease. Mine was T1N2bM0, and will see similar in other signatures.
http://www.oralcancerfoundation.org/discovery-diagnosis/stages-of-cancer.php
Hi KimbelyAnn,
I'm really sorry you have to go through this in the first place, and having so little information makes it more scary.
I get that you Physician is a top-notch guy, but I'm still going to strongly suggest that you get a second opinion, and get it from an oral cancer specialist!
You should discuss these issues that are confusing to you, with this guy. Also, is UPMC a CCC (Comprehensive Cancer Care Facility?) If not, please try to ensure that you get your second opinion from someone from a CCC; you want someone who does nothing but Cancer and not someone who sees one or two Cancer patients per year. The reasoning behind this suggestion should be obvious. Please do this, and don't waste time doing so!
My final bit of advice is to recognize that Doctors are people, and will tell you things that they feel you should know, and withhold things that they don't think it would be useful for you to know. Just like people in all walks of life.
My point here is that you must be careful not to be overawed with the Doctor's credentials, where you are concerned, what matters is how well he meets YOUR needs. Do not be reluctant to be demanding, if the occasion calls for it!
Knowing this, make sure that YOU ask the doctor to explain any matter that is confusing to you, and don't let him (or her) rush off to another patient until YOU are satisfied the question has been answered to YOUR satisfaction!
I'm not kidding here, this is life and death business, and it's YOUR life that is affected. Take charge, kick @$$ and take names and be a force of good for your life's sake.
Good luck, KimberllyAnn, and forget the Gipper, go out there and will one for the KimberlyAnn!
Bart
Kimberly, Im so sorry you are joining our group due to being diagnoses with SCC. Soon you will learn a whole new vocabulary of medical terms.
Try to read the forum and main OCF pages to help educate yourself. Being an informed patient is going to make it much easier for you to advocate for yourself when the time comes.
Now is the time to eat like crazy. Have all your favorites, even dessert. Just ignore the calories. Its ok to gain a few pounds as you will probably be like most of us and a lose substantial amount of weight. If you are on the slim side, its a good idea to bulk up a little. During treatment and also in your recovery phase, eating and swallowing will probably be a challenge. Your sense of taste will be off and swallowing could be a struggle. This phase is horrible but usually its temporary, lasting anywhere from 4-16 weeks.
Every single day from now thru the first year after you finish your treatments, your daily intake should be a minimum of 2500 calories and 48-60 oz of water. It sounds like alot but in reality its not. Your body is fighting the cancer, plus it will be trying to heel from the effects of treatment. Both of those things burn calories like crazy. Some days will be harder than others to take in so much but you can do it. We are in your corner, here to help cheer you on to the finish line.
Best wishes!
While you are waiting for thursday do set up a second opinion. However I looked it up and you are at a CCC - so assuming he is a top ENT there you should be in good hands. My advice is have someone with you since it's probably quite overwhelming when you go there. They can take note and go over Anything you might have missed. I suspect he is probably giving you minimal information to lighten the blow because from your initial post it seemed that he was playing light with the reality. Some drs will do that to make you less panicked - I wasn't sure since I didn't know where you were being treated. It's not all doom and gloom. Please don't take it that way. This cancer can be scary - what you need to do now is focus on getting rid of it. Ideally for your type of cancer (oral tongue - likely non HPV) things after the biopsy should move like this.
1) scans - either ct- pet - or MRI (or a combination of them) I had two cts - a head and one chest - and an MRI
2) then likely - surgery - ideally they will remove your tumor - and Do a neck dissection (this cancer can seed to the nodes and not be detected on a scan until they are a certain size. ) Often when they just remove a tumor - a month or two later a node will pop up and then another surgery is necessary. Ask your dr about this. If he is experienced he will have seen your type of cancer and know from experience how it moves Normally in your type of scenario. Based on that he can predict the potential for seeding etc. (Hopefully)
3) Based on the pathology from the surgery they will determine whether further treatment is needed. Usually the qualifiers for this are - more than one node involved - extra capsular extension (the cancer has broken out of the node and invaded the surrounding tissue) - peri neural involvement (the tumor is deep enough to hit a nerve) - and I believe they take into consideration the aggressiveness of the cancer. It doesn't have to be all of these things - sometimes only one or two - again - your surgeon will have seen the outcome of your scenario before and know what should be done next.
If it is determined to be HPV related (highly unlikely based on the location - you described) then they often skip surgery - however that is often based on location and invasiveness.
Occasionally even if it is not an HPV related tumor, they will choose not to operate - often this is because it is too large a tumor and removing it would have major impact on quality of life and overall function - as far as I can tell based on your description. - this does not apply to you.
Finally they choose to do a chest ct - because after the nodes that tends to be a top location for spread.
Hopefully some of that helped - ps: ct results are often available with 24 hours - don't wait a week to see him/or her again. You want this dealt with ASAP...
Hugs. And good luck Thursday.
I wanted to see him sooner and to have the cat scan do e before Thursday. The receptionist got angry with me and said nothing will change by Thursday. And she knows this how?
He told me that only partial tongue will be removed. Left side part. It's 5mm in size. He said I prolly won't have to do speech and swallow therapy. I rather be told the truth. When I got home from va. I felt pretty good. After all the first dr said not worry. It's probably not cancer. Then oh sorry it is. Awful. I need to pray today again. So I don't lose my mind.
Cheryl, thank you. Very much.
I know it's a mind blowing reality when it hits you. It's good your having your ct before Thursday then you will have some answers by then. Part of the trauma is the wait. And his secretary has likely never been on your position so she simply can't understand. My questions were how soon ? Every time I talked to one of my drs. It is superficial... 5mm is fairly small, but at the same time it's cancer and I had a friend in here (she's doing well btw) who also had a superficial cancer. Her dr. Did everything... Neck dissection even though nothing showed on the scan - one node was positive and had ECE (extra capsular extension) so he sent her for rads. A lot of drs would have said.ll clear scan no neck dissection - but hers had a feeling and he as right... Experience with this disease is very important when it comes to choosing a dr. I know it's not much help but look at it this way... It is what it is - you are going to do whatever you can to fight it. Educate yourself - and then do things you enjoy. Dont make this the focus of your life. Go for coffe or tea, visit friends live your life. Worrying will not change things - face what you have to when you have to and give the disease your attention when you have to but don't let it take any more of your joy. Hugs.. You will get through this.
(((Cheryl)))) hugs back to you. Thank you so much. I am getting my cat at 8 am on Thursday and at 9 he said he will have the results and have a plan. I am just not thinking clearly. She prolly meant no harm, I am just on edge and not thinking maybe.
I keep going from extremes. I am trying to be positive, but I keep failing. It works for awhile. I am looking into support groups for me and my family. In person...and I may actually start taking Xanax. I am very anti drug and never took these long, even with my wrist panic attacks, I refused.
But now, I don't know what's going on with me. I can't seem to feel better for too long.
But I am trying... I am praying.
Thanks again
Kimberly
Bart, thank you. It was superficial but not anymore. He said stage one or two but I still need my cat scan done, will be this Thursday. He mentioned having to take out my modes. Maybe he can tell? Not sure. Upmc is a ccc. I decided that with these two opinions, I am going to go with this guy, upmc. I did feel confident in him, I think I am overthinking things, getting too upset maybe.
Thanks again,
Kimberly
It was superficial 10 days ago, then last week he said his findings are that it's squamous cancer and not superficial;(
It was always squamous cell carcinoma either way, even if it was superficial, another word for it not being invasive, which is called carcinima In Situ, when the cancer does not break through the membrane cell to spread. If it does, it's then called invasive carcinoma, and can spread.
I hope this helps, and good luck with everything.
Paul is right about the insitu vs invasive. A lesion can be small but still be invasive. This is why this cancer is so tricky. I wouldn't get too caught up in the staging. While on some level it is important to know that. To me a better indicator is its differentiation, and nodular involvement, and amount of time from the appearance of the lesion to possible spread to the nodes. This is a good indicator of how aggressive this cancer is.
I only say this because knowing this other information will indicate what potential treatment you will likely go through and whether your dr. Is being aggressive with his treatment.
Not that I think there is ever overkill with treatment (frankly no one ever complained of getting too much treatment - but some have complained of not enough)
Invasive or not though... I always say push push push. This is cancer you want it dealt with by a top dr. And as quickly as possible. Take care.
There is a place called Treatment Centers Of America, they told me that the one in IL would take me insurance. It's a three day visit, it's far from home. I do t know if I want to keep going back and forth for treatments. My husband bas to work to support us here. Anyhow heard of them ?
And when do you stop waking up every am with dread? I almost hate waking up:(
I guess I will see how Thursday goes and what he finds out. I just feel so numb still. I have little faith and can't stop crying. I hope it gets easier. As I am weak. I try to be strong. Thanks for reading. Please pray for me, I feel depressed. Thank you . Kimberly
Treatment Centers is NOT a CCC. They are a for profit center that has been known to turn away complicated cases in order to keep their "cured" numbers higher. When checking the lists of top treatment places, that 'hospital' is not on any top list, that should raise some red flags.
Below is a list of comprehensive cancer centers (CCC). Those are the countries top hospitals to treat cancer. They use a team based approach where all the specialists get together so everyone is on the same page. If you cant get to a CCC, there is also a list of the top US hospitals. Look for a teaching hospital or university hospital.
CCC list US News Best Hospitals List
Hugs Christine;) you just saved me a lot of turmoil!
Upmc is rated 25. So I believe that is where I will stay;) ctca
told met insurance would cover most but 6000 or so.
I rather be in my own hometown anyhow;)
Bless you and thank you;)
Kbey