Well, anyway that's what I am hoping. Today's ENT followup was less than optimal. What had been "palpitated" last month as "perhaps scarring" now is a pea sized lump under the skin of my tongue at the base near the tumor site. So MRI in 2 days and a full biopsy "soon" is the plan. My ENT and I decided that "watchful waiting" was too stressful, esp with major potential for serious downside. So my lump's future is to be cut and snipped, then whisked off to the pathology lab. I really hate how the fear of recurrence haunts every ache and pain or symptom. that's the worst part of cancer in my mind (although the radiation was the worst for my body)
Anybody out there have benign lumps that are nice and soft and small just pop up opposite a bony jaw protrusion? If not, I hope to be the first.
I will keep my fingers crossed toes crossed legs crossed and anything else I can cross for you and will add prayer on top of it and stir it all around and send you good vibes...I know what you are talking about and I am so glad that your ent is thoughtful about the watchful waiting and stress levels. He is well worth his weight in gold!!! I am so amazed that these professionals can tell the difference between scar tissue and potential danger it all feels the same to me...Try to stay positive and you know the drill it isn't cancer till pathology says it is!! Just take one step at a time!!!
Thinking of you with hope
Dianne
Charm,
I hope everything gets resolved quickly so you won't have to worry. We all hate the waiting and wondering. I did have to have a biopsy at the BOT and they put me under. Pain was mild for a few days and eating was limited to soups. etc so have some great meals before.
Diane
Thanks for the support. You are right that I am lucky to have such an emphatic ENT surgeon. Not only is she a woman in a field dominated by men, but her husband is a long term oral cancer survivor who uses the same cancer dentist as I do. It really helps a lot as her perspective is so different than the rest of my medical team. The RO and MO were pushing neck dissection but she held firm in supporting our decision to not have the surgery since the MRI was clear. While she can understand those patients who are ecstatic about having an amazing number of lymph nodes taken out that were perfectly healthy, she understands that would have horrified and depressed me. In an ironic comeuppance, I will now be one of those patients who has surgery (albeit minor) and will be overjoyed if it was totally unnecessary.
David
Our treatment paths were remarkably similar as my first biopsy in August 07 was done under anesthesia at GT Hospital due to the location of the tumor. So as Yogi Berra said:" It's Deja Vu all over again." Meals already aren't great with no taste, so at least the recovery period this time around should be easier. Time to buy some more Ensure Plus.
Thanks for the reply and I like the sound of "waiting and wondering" better than "nervous wreck".
My lump which they believe was scar tissue/rejected suture material (final jury statement still out) popped up almost overnight. If I believe the cat scan and fine needle biopsy it was indeed a benign lump. I have also had other benign lumps pop up in my neck and mouth. Perhaps that is why my file at Cancercare now has Volume I and Volume II. !!!
I'm glad you are acting on it. I never understood "watchful waiting". You have to trust their judgement - they have seen it all before - but isn't it kinda like standing on the train tracks and employing "watchful waiting" for the next train?
Hang in there - we're here with you.
Donna
Pleeeeaasseeee, Carnation Instant Breakfast VHC. I don't want Jim on my case. lol
Donna
Thanks for sharing that lumps can be benign. "Watchful waiting" is a phrase taken from slow growing cancers like Prostate cancer. With tongue cancer it is like an express train hurtling at you if you don't take action. although I agree with you that if I was diagnosed even with prostate cancer I don't think I could just sit and wait.
David
I hope never to be so desperate as to have to force down another VHC. Truly, the barium mixture I drink before each Petscan goes down easier and tastes better than VHC. The ensure plus is tolerable.
Although I do concede that only the VHC enabled me to not get a PEG. I did not find out about it until my last erbitux treatment and the last 15 rads. It was only because the chemo nurse who caught onto my little trick of putting fishing weights and my blackberry into my vest pockets when I was weighed in agreed to let it be our little secret if I would drink the VHC samples she brought.
Hi Charm 2017. I would feel the same about watchful waiting. I don't like that term. Seems easy enough for them to just do a biopsy or the needle thing so they know for certain instead of just letting it get bigger or smaller and you feeling worried about it. I'm praying that it is nothing and just some tissue change or irritation.
I too stress out about any lump or bump
and get myself into a total panic before every check up MRI. I don't know that the fear of a recurrance will ever completely go away but I'm hoping it will dissapate the further away I get from my surgery and treatments. Hang in there
Kisses and hugs to you.
KATE
Fishing weights in your pockets!!! Boy I thought I was bad when I was a kid and would put the thermometer on my bedroom radiator just so I could stay home from school. Worked a few times until the thermometer exploded, then my mom always stayed with me while taking my temp. Boy, talk about lack of trust! Scarred me for life.
Re the VHC...I really didn't mind the VHC. I really enjoyed it mixing it half and half with whole milk during my recovery when eating and I use that term litely was unpleasant.
Kate
Thanks for that bit of California sunshine. I love San Francisco and my jobs used to take me out there every year for a week at a time (and sometimes 2 or 3 times a year if litigation was going on) for almost three decades. Oh yeah, and I actually did wear flowers in my hair. Lots of great memories (some sad ones too with my little brother dying of AIDS in SF General in 1984). I am getting ready to head out to the cancer dentist (I know he prefers prosthodontist)this morning, then an afternoon MRI in preperation for biopsy.
PEACE & LOVE
David
And I thought the thermometer trick only happened in the movies. But then again, your life sounds like a screenplay in some aspects
Never thought about diluting the VHC. Trying to keep my no major surgery roll going here in this Cancer journey. Thanks for giving me today's smile.
I joined this forum last night after being super paranoid by a sore tongue and looking around the internet for help. I have to agree that the worst part of this entire ordeal is the fear of recurrence.
I've only been in remission for a couple months and this week marks the second scare I've had. I burnt my tongue on some hot coffee the other day and have become paranoid that the persistence of the burnt area is the cancer returning. (I already have a regular check-up scheduled for next week, so unless this gets worse, I figure I'll just wait for that.)
The first scare I had actually turned out to be a small piece of gauze that got stitched into the side of my tongue during surgery. A little light-colored mass sticking out the side of my tongue a few weeks after surgery about scared me to death, but when I went in to see the ENT about it he seemed to find it quite funny. I suppose in retrospect it was.
Good luck with your MRI/biopsy! I hope the lump really is just a lump.
I would have to say one of the worst parts of this disease is the fear and waiting . I dont know that , that part of it ever leaves us , even when we are in remission for 10 years.
That and the fact the ages are getting so much younger with no "standard" risk factors. I see your age Jen and wow .. When I was diag almost 2 years ago at 35 ..in my area that would be like 4-5 counties in NY ... I was the youngest Dr had seen.
Charm I sure hope this proves to be nothing . I will be waitng here with you for the results .
Shar
Jen
Welcome to the OCF Forum. This is a great place and unfortunately is getting lots of new YOUNG members like yourself. Don't be embarrassed or bashful about letting your ENT know about your concerns on the burnt spot so you can get the reassurance you need. This journey is scary. Arizona is lovely and Phoenix/Scottsdale was the very first trip my wife and I took to celebrate my recovery. We went around Valentine's Day last year- they had a cold snap but it was warmer than Northern Virginia. So much sunshine. Thanks for the good wishes.
Shar
I could not agree more that the constant fear of recurrence is troublesome. Only OCF posters (whether patients or caregivers)seem to truly understand what we go through when "something" appears. I am dismayed about young women like yourself and Jen joining our little club - it is so unfair. I hope to have the biopsy done and pathology report by end of month. Heading off to the MRI in an hour. Thanks for the support.
Charm for me it is not just when something appears but general over all feelings and the unseen that seems to bother me too!!! Like an ear ache or headaches or fatigue all things that seem to make me go hmmm...Time seems to stand still when we are waiting. I know there will always be a nagging feeling but I am hoping it gets easier....
Dianne
From my own perspective, your feelings at less than six months after TX seem very familiar, esp ear pain. But in my case it has gotten better, and I believe it will get better with time for you also. It's okay to be prepared for the worst, but we also need to expect the best. It's normal to be scared when there is real danger. Still, no reason at all why you shouldn't be a survivor posting here a decade from now.
Charm, I read your post about "flowers in your hair."We were hippies and also wore "flowers in our hair." We lived in SF and were part of the summer of love 1967. Richard smoked cigarettes from the age of 13 to 23, pack a day Lucky Strikes. In the fifties, many boys started smoking early. At 23, pot was so plentiful it was easy to quit cigarettes and switch over. He stopped pot about 30yrs ago. Since this diagnosis, we have suspected that the 20 years of combo smoking ultimately is the cause for this cancer. We'll never know for sure, but it's a good bet. The price is being paid for the past when everything seemed possible and we were all invincible.
Geri
"For what it's worth" (you and Richard had to be Buffalo Springfield fans)- friends from San Francisco "turned me on" to (good thing bad puns don't cause Cancer) two or three medical journal studies (one from UCSF medical) that purported to show no link between marijuana smoking and oral cancer. If you guys are looking for a cause of OCF for ex hippies - My money would be on HPV - My memory of the "decade of Love" was pretty much: "If you can't be with the one you love, Love the one you're with" -
Finally, check out my post on Patrick Swayze and smoking that I am about to put up.
Thanks for the boost Charm and as far as flower power living...I guess I was a hippie reincarnate as my first love and the father of my children was nine years older than I and introduced me to a heck of a lot...now life has changed with responsibilities and new normals...but that bit about love the one your with I think extends past the age of flowers...
Well, sometimes medical care is trumped by National Security.
"The plan unveiled by the Secret Service and area transportation officials closes all Virginia bridges across the Potomac and interstates 395 and 66 inside the Beltway to personal vehicles. Also closed to personal vehicles will be the Southeast-Southwest Freeway in the District and much of George Washington Memorial Parkway, which will be closed in both directions between the Beltway and the 14th Street bridge"
Long story short, this basically makes it impossible for me to get to the CCC in DC for the biopsy which had been scheduled for the 20th (I had wondered why that day was the only one wide open - they are thinking of canceling all the surgeries now as there are major issues on the staff getting in also with no exceptions made by the authorities). Now I have to wait until Jan 28th or 29th for the biopsy, then wait for pathology report on the lump.
Oh well, it will make for either an exuberant Valentine's Day or a bittersweet one - either way one to remember.