Hi CM57,

This week I have 3 surgeries-- starting Today. As nd Thursday is my double surgery with 2 of my head & neck Oncology surg e one in the Main OR. I will be admitted afterward into The Cancer Center hospital.

Today is my EGD with dilation-- for the 5th time, my G I surgeon is trying to open up the Pinpoint Obstruction , which is blocking my lower esophagus. It's a dangerous orocedure, he uses a Guide wire to thread through it. He gets so worked up worrying about Perforating the esophagus, because it's happened twice before with me, and it's a big complicaruon..

Thursday Main OR-- First d doctor is addressing the Pre-malignant mass beside my vocal cords #1 He is taking a more extensive surgical biopsy and #2 He is doing Laser surgery to this mass.
He Warned me last week that this will Not eradicate it. He said we will be doing this surgery and following it every few weeks / months ..

Then, my primary oncology surgeon comes in and he is Resecting this Oral tumor/ lump/ whatever it's evolving into.... He biopsied it in January, and now it is Triple the size it was then. It's in front, and it's now visible when I open my mouth! It's in bottom palate, and now has grown into my reconstructed tongue Flap. Not good....
So, he's doing surgery to remove it, submit for pathology...

Given my history of Recurrences & Mets-- anything is possible.
This thing has grown larger since I was in his office just last week !!!
Do benign tumors grow that Fast? And spread out like this one has ?

Anyway, I will be admitted to The Cancer Center afterward, at least for one night.

I am okay at 75 pounds and I have my G tube... I will need it after surgery.

But fasting now, of course for my surgery in G I today.
Then Wednesday, I have to Fast again for early Thursday morning ...

Nuts, but they called me yesterday and said this double surgery cannot wait, because both areas are showing Growth.

Wish me luck.

CrystalJ

Hi Crystal,

I'm hoping that your dilation went well today. I'm not surprised that there is large risk with that procedure, you have different medical issues along with the delicate nature of something going down a person's throat! I'm having faith that with the doctor having experience in doing this procedure on you that his skilled hands performed well.

I really don't know how benign tumors act to be honest. I definitely think they grow, but no idea if they grow slower than malignant or just as fast??

I'll be thinking about you for sure Thursday! Big surgeries so I'm sure you're a little uneasy. I believe you said you have your mother and sister to help you, correct? Will they also be keeping your dogs?

Yes, I basically you could say am cancer-free, to my knowledge! I had a ct scan a month or so back and there wasn't anything seen. I have a PET scan next week so hoping the same from that.

I have still been on oxycodone (I've been able to eliminate taking morphine too) to manage my throat pain that is a result of the radiation. For my throat pain to still be so severe, they think I have some nerve damage. They do think my throat is just needing more time to heal and do believe that my throat pain will eventually resolve. I think it's wild that you have got through so much of this without pain medication! It sucks that they make you sick!!

Hi Laura,

Good luck with the PET scan next week. I may be weird, but I actually enjoy the scans! I just dose off... And they have always Fascinated me.
But you know what? Not One of any of my scans, ever picked up the cancer that metastasized to my lower lip. And that area had an over the centimeter tumor, Twice, that was invasive and had deep Positive margins!! No scan ever showed it!! Scary.

OK, I had trouble last night...chest pain, because Dr.C. accidentally Tore the mucosa, a good bit ( I have the photos) , trying to get through and dilate that lower Obstruction in my esophagus. He again had to use the Guidewire, to thread through it, and then dilated it carefully over the guidewire. It's been ulcerated and bleeding in there, since radiation... So, the tissue is in had shape.

So last night, he was emailing me over & over, worried that it might develop into Perforation... Monitoring my pain.. Then this morning, he was emailing me again, hoping I was ready for my Big upcoming week ahead.
He has already set up my next on, May 14, just 5 weeks away.

Tomorrow, I am First Case. I check in at 5:30 am at Surgical services, surgeries to begin at 7am.

On clear liquids now.....
This is the exact same scenario as the last time these 2 guys double teamed me in the Main OR. Same thing, I am their first case of the day.
I get up at 3 am, get my shower, and email Dr. B, my primary surgeon... Telling him, Lets Rock!

Surgery supposed to be 2-3 hours, the scheduler told me today.
So, I will get to bed by 8-9 pm, and get up Early!!!

In lots of pain today... Just took some Tylenol. Not working though...
I may be admitted, so I will try to take this Android with me. Probably will be writing notes, after Laser surgery to vocal area, plus mouth sutures. #$!!@&%!

Hi Crystal!

So glad that your surgery went off without a perforation (that you're aware of)! I hate that you're in a lot of pain but geez the procedure sounds uncomfortable so I bet you're still feeling it! I welcomed pain meds for pain but the downside is they really make you sleepy! At least me anyway. Sleep is great except when you sleep off and on so much that it's hard to get normal day to day stuff done and you feel like a loser for not being able to get off the couch! Anyway have they tried all the different types of pain meds to make sure ALL of them are intolerable for you? There seems like there has to be SOMETHING out there for you besides Tylenol.


Wow nothing picked up on your scans!! I guess though in the medical field's defense, they have no other way of finding a tumor! I don't even think there's markers in your blood. Like higher than normal white blood count or anything. I could be wrong on that though but that was my understanding that basically there isn't any indication of cancer other than the tumor (unless maybe if it's different if there's mets….then I'm not really sure what even shows up with that.) Did it surprise them that there was NOTHING there? I wonder how common that is???

I can't believe a doctor was EMAILING you because he was concerned. It sounds like you probably should of been kept in the hospital for observation if he felt there was a major risk of a complication developing! That just comes off as unprofessional to me.

Well good luck again on the double surgery. You being first in line, you get the surgeons when they are fresh and alert!

BTW, I realize you may not read this until after your double surgery. By all means, if you don't have the energy to respond or whatnot for a few days or even next week then take the time you need to rest!

Sending positive vibes to you for tomorrow and the following days.

Laura,

Before I tell you about my Double surgery, & the fact that I'm now on antibiotics because I have another Pneumonia-- let me first Correct you-- I didn't say Nothing showed up on my scans.
Of Course, my 6.3 Centimeter monster tongue tumor showed up & all 3 recurrences showed up to. In fact, even my current pre-malignant tumor showed up, in my December PET scan. This last scan my entire esophagus Lit Up, as did my base of tongue & larynx.

The one that did not show up, was the one that metastasized to my lower lip, from my tongue. Or, it was a new Primary ?? Or, it spread by my PNI ??
Whatever the case , it never showed up on the scans. How did we discover it? Surgery and pathology.

Ok, Thursday's double surgery. My 2 surgeons were in the hall talking, as I walked in. I got there at 5:15 am, ... They did Intubate me-- Endotracheal intubation to establish an airway... Surgery was over 2 hours...
3 biopsies submitted to Pathology lab, I was expecting only 2. But I can see a Punch, in the back of mouth, right side. So, no idea yet about that one.
The deep biopsy and then Laser surgery, to lesion beside vocal cords , caused bleeding and if one can fathom it-- my Speech became even worse than usual.
To add to it, the second surgery in front mouth, with sutures...just added to the poor speech! I truly don't see how anyone understands me!!

The mouth tumor/ lump/ whatever it shakes out to be-- feels So Much Better to have that large painful thing outta there!! I can tolerate the sutures, better than the lump/ growth.
He did have to cut into my tongue Flap-- but since the tongue Flap remains Numb, almost 2 years later-- I don't care!

Pneumonia-- March 19th, my GI doctor's PA heard Crackles in my Lower Left lung. She heard it repeatedly. So, I told my immunologist and he called in Levaquin for 7 days. No one bothered to x Ray me, before my 3 surgeries this week...
So, I come home from Thursday's double surgery, and feel increasing Worse.
My temp spiked to 101.3, which is high for me ( I run very low, 96-97. That's my normal).
I called the on call surgeon ...he said call back
Friday and report again.
Run around... Finally the Anesthesiologist calls me, and orders an x ray.
Which showed pneumonia.
We don't know yet if from Aspiration or if bacterial. But I'm on antibiotics again now.

I'm weak... Tired, nauseated and have awful coughing. They want a Sputum culture....And my goodness, I have tons of new appointments coming up, including more scoping the throat and my next Laser surgery has already been scheduled.
My eye doctor is screaming at me to come in, for my Radiation induced cataracts, and I have no time.
And my Prosthedontist wants me to come to his office, 1 1/2 hours away to try my new upper, but I do not feel like making that drive right now.
Gotta treat this pneumonia. It's my 5th one, since cancer diagnosis.

Crystal

Yowza Crystal!

Well I figured this double surgery wouldn't be a walk in the park for you. The pneumonia sucks....you knew they were afraid you have been aspirating (which I realize may not have been the reason for your pneumonia). I'll take it that you didn't mention any other complications, then the surgeries were a success?? I don't mean to make light of pneumonia at all I know that is a serious infection. I guess what I'm getting at is aside from that, did your doctors feel satisfied with the outcome of their surgeries? Were you in for just overnight? Maybe they should have kept you longer to watch for any signs of problems??


I hate that your weak and have terrible coughing but GIRL, getting the tumor cut out has to be such a relief!! Just knowing you have cancer growing in your body really messes bad with your head! That wait is just agonizing to have it CUT OUT. I know you're in pain with the sutures and coughing and vocal cord but I am happy for you that your surgeries to get it cut out of you is done.

The weather has been amazing here (it got up to a beautiful 81 degrees), I went back to work on Monday and I always keep busy with 3 boys! Two of them had dentist appts today and the other I had to get back and forth to baseball practice. So, I have residual fatigue and still on oxycodone but I'm trying to get back to my old life as completely as I can. The rad onc also has me on gabapentin but I don't think it's really doing anything for me.

Even though I'm getting back to my old life, I still feel a strong pull to this site and just to not ignore the fact that I had cancer. It's weird. I want all the symptoms to be GONE but emotionally, this requires a longer healing period is what I'm learning.

I hope your dogs are keeping you company and that you've been able to maybe have been able to have a window open or two to get some fresh air lately. I know you have bigger things to worry about but a nice day or nice weather can improve our moods and we need all the help we can get some days. Especially after everything you've had to deal with, and the stuff you've not be able to deal with because you've been too busy!

Hi Laura,

Great to hear from you. Yes, I bet those 3 boys do keep you busy!!

I am awaiting the 3 Pathology reports, from surgery.
Yes, taking Levaquin for the pneumonia, but they also are making me turn in a sputum receptacle, for culture. I may not be taking the correct antibiotic, we will see. I have a tendency to grow Opportunistic infections in my airway, so they wanna rule out anything unusal.

Unfortunately Laura, I will be repeating this Laser surgery quite soon. He told me that he cannot eradicate this lesion this way-- so, he has to keep hitting it again and again.

He is trying to save me from another radical surgery and more radiation....I have the newest photographs of the mass-- and it grew right back after the 4 punch biopsy, done in February 27th. It recovered and grew back. That's why the urgency of him wanting to get in there and try to knock it back.

He said this is going to be an Ongoing thing, Lasering it. C02 Laser.

Just like with my ongoing esophageal dilation. ( yes doing my next one, only 5 weeks after the one last week, it's May 15th.)
I am covered up with appointments, post ops, upcoming infusions, eye surgery ( I have Radiation induced cataracts!), Prosthetic dental appointment 11/2 hours away....and an appointment with new Pulmonary doctor soon.

Yes, yes, it did feel such Relief to get that tumor out!! Believe me, I emailed my wonderful surgeon and Thanked him, telling him the sutures feel so much better, than chewing on that lump!
It was attached to my Flap ( which is Numb so I didn't care) and my poor chin is still puffy and swollen, ....

I hope you are feeling better and can continue the taper. If the Gabapentin is not helping, try to cut it out too.

Crystal

Hi Laura,

I hope you are doing better than I am!
My recovery from surgery is being complicated by having E. Coli pneumonia.

My pulmonary doctor had me do a Sputum culture, I turned it in early last week and Friday she told me it has grown out E. Coli.

E. Coli in my lungs? How did that happen?

She said either by aspiration my stomach contents, Or from being on mechanical Ventilator during surgeries.... Or from aspiration during the many other produres, surgeries, scoping I've had in recent minths.

When one gets E. Coli in the airway, it settles in the lower lungs, which is exactly where this pneumonia is for me now.

My pulmonary doctor decided Friday to let the Lab continue to grow out this culture, until tomorrow. She wants to see if it grows anything else in addition to E. Coli.
I usually get Klebsiella pneumoniae, which is a respiratory bacterium.
She is going to switch my antibiotic, tomorrow, because the one I'm on is only 70% effective against E. Coli, and she wants to make sure everything that grows out, is covered....

I don't have a fever now, but still have productive cough....and I'm a little tired.

My sutures have to stay in until end of month when I see my surgeon in post OP appointment. I hope it heals okay, because this was in the irradiated field.

Hope you have great weekend!

Crystal

Man you do keep those specialists on their toes! E. coli in your lungs on top of the pneumonia whew!!!

I thought it was weird that you said you had radiation induced cataracts. How does that happen if we're not getting radiation to our eyes? My understanding is the radiation is, you know, a laser beam type of thing that is targeted to the specific areas in the head and neck that they want radiated. And by gosh I sure hope they aren't by chance directing that to our eyes!

Do your dogs lay with you and keep you company? How are you eating these days? Bummer that you have to wait for the sutures to come out, I remember waiting to have my sutures removed that was holding the bolster to my tongue, what a crazy experience that was.

Hey Laura,

My SCC cancer has returned. The fast growing Oral Tumor-- Pathology report reads:
Invasive squamous cell carcinoma with Deep Positive margins.

Had my CT scan yesterday and I will be in the Hospital all day today getting my infusion. I

Hope you follow me as you can. My immunology called in another antibiotic to the cancer center pharmacy. Maybe it will be ready today and I can pick it up while there.

Crystak

Hey! I hope you're doing ok (all things considered of course). You knew that the pathology report would say it was cancer, right? They had the evidence it was cancer due to your punch biopsies. I guess I'm curious if there was anything surprising that they found from the surgeries because from my understanding all the pathology that came back was exactly as the doctors thought.

I went to my new pain specialist today and physical therapy. My radiation oncologist now referred me to the pain management clinic because she said she has treated me up to her knowledge level and now it is up to them now on how to manage my residual radiation pain. She said she's not very knowledgeable on long-term pain control so it makes sense I've now been turned over to the clinic. The guy was great. He was fine with me not liking gabapentin and deciding to taper off and quitting it and with continuing my oxycodone. He did say that cymbalta (sp.?) is the drug of choice for ongoing pain from chemo and/or radiation so down the road if I want to explore another option then that is what he has in mind. So anyway all in all a great appointment.

The phy therapy is ALWAYS soooo relaxing. It feels so good to have someone work and loosening all the muscles in my jaw and neck to keep those muscles good and pliable. I go twice a week and my insurance has approved me for 60 treatments so I'm not sure when I will give these up but right now I'm thinking not anytime soon. They feel good and they really do a good job with getting rid of the puffiness under my jawline by basically massaging the lymph fluid and encouraging it to flow down and out of my neck. Have you had a neck dissection? I know you've had throat and tongue but I don't remember anything said about the neck dissection.

I received a machine yesterday delivered to my home that is also being used to treat my neck/jaw lymphedema. It's called a flexitouch. I strapped that thing on and hit the power button and it was very relaxing. Have you ever heard of it? I can't wait to get home and use it again. It's not as nice as the massage but it does feel nice for my stiff neck and jaw.

Anyway I look forward to hearing how things are going for you!

Hi Virgomom,

Tuesday May 14 is my cancer surgery, much more extensive This time going after this Invasive SCC , and trying to get clear margins.
April 11 he found positive margins, Deep.

This time wider surgery, floor of mouth and he will be cutting my reconstructed tongue Flap, right in front because the tumor has invaded my Flap! Damn...

They are admitting me with this surgery..

More pathology reports will follow, and probably a new treatment plan.
I offered to do a second course of Radiation, targeted to this new area specifically .( They will have to make me a new mask).

Anyway, I will let you know how it goes.

Crystal

Crystal J,

Good luck with your upcoming surgery, and a speedy recovery!

PaulB,

Thank you so much! I don't know what your experience was, but mine is quite lonely !!! Just not much support at all, but hey, I've always done things by myself-- so goes it....

I will update here as./ When I am able.
Thank you, dear.

Crystal

Wow Ok so tomorrow is the day. Did they say if they were going to make a new flap for your tongue? Did they say how long they expect for you to be admitted?

I'm so sorry surgery recovery is lonely for you. Feel free to message me on here if you need to!

I know my story seems simple as I've had my first cancer and treatment and now am hoping for no recurrence but I do have a spot on a breast that showed up in my PET scan so I'm trying to mentally deal with that. My mother has breast cancer so why should I be surprised here ya know? lol I know I have to have a mammogram next but I'm sure that's going to be followed by a biopsy if the 'suspicious looking area' isn't completely explained away during the mammogram. So I'd say we are both not all that well mentally from worrying about all things cancer.

You got chemo right? Have they tried immunotherapy with you yet?

Good luck tomorrow and I'll be thinking of you. Hoping for clear margins and no complications and a good rebuild of your tongue!

Laura

You're not alone!!! We're all right behind you in your corner rooting you on There may not be a waiting room full of friends and relatives but you have people all over the world who have a deeper understanding of what you are going thru as we've been in that position ourselves. I didnt have lots of people to help me... pretty much it was my teenaged children. What I lacked in people to help me in my area, I made up for with all my OCF pals. They're who helped to get me thru the hardest things Ive ever done and they even sometimes made me smile (although trying to smile was painful). I cant imagine anyone with little to no help nearby and also being without the OCF and our caring members.

Good luck with everything!!!

Hello ChristineB, Paul, Laura,

Home from the hospital, ...I really don't know if anyone here has had this experience, but maybe. I might make a new Post, just to ask---
Yes, my tongue Flap is actually sutured down, To My Bottom Lip.
And it's through the roof painful....

This surgery was to go back in, but Wider & Deeper trying to get Clear Margins. After the April double surgery I had.
I was First case of the day at 7am. I got there & checked in at 5:20am. (Same as my April double surgery)

But the day before surgery, I myself found 2 new lumps/ tumors, right up front where the new one was removed in April. One was another Floor of mouth hard lump.... The other one was a larger, soft lump underside of Flap, close to where the surgeon needed to excise again ( to find Clear Margin from April surgery). So, that early morning I showed him, right before they put me under. He felt them with his fingers. ( he has been my doctor for the past 26+ years! We are very bonded, close. I cook for him!)

General anesthesia, Endotracheal intubation, ventilator, etc . 2+ hour surgery. I was
The junior surgeon who came to my room, that evening ( he also has been on my cancer team for the past 2 years)-- He said in Floor of mouth--- "Crystal, we cut out everything we saw. Which was a Lot"
They pretty much Gutted the floor of mouth, all the way across front.
Tongue Flap-- the Holes they had to cut in my flap were so large, that they could not leave them open. So they sutured the Flap down, to my bottom lip. Only way, he said, to cover those large holes.

I have Layers of sutures. Floor of mouth, is bottom layer then tongue Flap stitched down over that, to lip.
( Keep in mind, my lower left lip was Gutted Out Twice in 2017, from invasive SCC tumor w/ deep positive margins that spread from my tongue ( through PNI ??). He Never found clear margins there, thus I had Radiation)

The result right now, of my Flap sutured to my bottom lip??? A very tight, swollen, strained, red streaked, very very Painful Bottom Lip -- swollen chin, under jaws, down into my neck....

On clear liquid diet, antibiotics until May 29th when I see my Primary surgeon in Post Op clinic visit.

No idea what this tongue flap will be like, when released from sutures.

Also, I've no idea what's next for me treatment wise...

2 places Enhanced on the CT scan , in my Flap, before this surgery. One was totally expected, where that tumor had invaded/ grown into the flap.
The other place that enhanced really caught my attention-- a place on the 1/4 natural tongue I have left that's been irritated & painful a long time. That place enhanced..... I finally, after many months of ignoring it-- told my surgeon.
So he biopsied it. ( he said it doesn't look suspicious though. I hope it's just something benign!!)

Monday I'm supposed to get Scoped by my Voice & Swallowing disorders Head & Neck doctor ( my second Head& Neck doctor)-- to look at the moderate dysplasia mass beside my vocal cords, that he zapped with Laser surgery in April double surgery. No I don't feel like getting scoped, but if he thinks it's safe right now, with all I've going on-- I will do it. Anyway, he can check me out.

In pain, so getting to bed soon.
Thank you So Very Much for all the well wishing & encouragement!!! You really don't know how much it means to me!! It's tremendous. To hear from others who actually Know what this road is like-- it is just so important!!!

Today I finished a pretty stitched table topper, that I am mailing to a 50 year old lady who has Multiple Myeloma. She's on 3 chemotherapy treatments and None of them are working.
They've given her only 6 more months to live.
So, I've been focused on Her for a couple days, finishing her project , as I slog through my own pain.

Hoping my tongue Flap can be saved...

Crystal

By the way, I don't know if this is my 5th & 6 th recurrence, or if it's a new Primary.
Either way, my SCC found a way to adapt to my Radiation treatments, of 1 year ago......It evolved, was resistant to the radiation, and kept on growing.

I did volunteer for more Radiation to this area. I don't know if that's the answer, or Erbitux, or what....

Foundation One-- my medical oncologist sent one of my frozen tumors to Foundation One, in early 2018. It was a Base of Tongue recurrence. Ulcerated, Invasive, with positive margins.

The tumor had O matches, for any presently known targeted drugs. None, zip, nada. It had no matching characteristics / mutations to any targeted treatments.

In fact, my tumors profile described it as being an aggressive tumor, with a pattern of Recurrence. It showed a poor prognosis.

It's living up to its genomic findings, I guess.

I just have to depend on my excellent Team, their collective experience, and the fact that a couple of them have known me/ treated me at this wonderful CCC, for 26+ years, long before I was a cancer patient.

Please remember, my genetic immune deficiency comes into play big time, when choosing treatments for me. It's very complicated...

Tired, rambling on too much, sorry!
Crystal

Oh gosh Crystal!

You have so much on your plate that it's hard to figure out where to begin. I do think it's so amazing that your making that thing for the other woman who has cancer. That is so kind of you to spend your time doing for another! I have always wished I had a talent for making things but I'm just over here admiring every one else's talents haha!!

I am so hoping that they feel confident that they got it all when your biopsies come back. And yes I hope your tongue use is good once they remove your suture that is holding it to your lip. I'm having a hard time picturing what your poor mouth has been through.

Thank you for giving the update. I've been thinking of you and checking in here to see how you're doing. It's nice to know that even though all you've been through you are still managing to have a positive attitude which is more than I can say about myself even. I definitely do get in funks from time to time from being annoyed to have been afflicted with cancer and this aftermath we have left over from getting treatment.

I hate to hear that right now there's no clinical trials that seem would fit for you. Don't focus on that part please and leave that up to your medical team to figure out.

I wish you lived nearby, I would love to give you a hug so I'm sending you one here (((((hugs)))))!

I hope you've been at least able to enjoy some of the beautiful spring weather. This Spring weather I think has helped lift my mood. Something about sitting in the sun feeling a breeze and listening to the birds that just makes your tired soul feel at peace. At least for me. But then again, lounging on my big soft sectional with a good show on the DVR brings me a lot of peace too haha! Do you have any favorite shows you like to watch? I'm a reality tv junkie. I love shows like 90 Day Fiance, My 600 lb Life, Naked and Afraid, Married at First Sight, to name a few.

Laura

Hi Laura,

Even though I cannot eat ( and I haven't had any solid food since March 2017)-- some of my favorite tv shows are Baking and cooking shows. I still Bake & cook for others. Everyone loves my food ( I used to Compete all the time, and win a lot! Interviewed by Food Editor, in the mewspaper, etc)

Today my second Head & Neck surgeon ( Voice & Swallowing disorders)-- he Scoped me to look at the mass beside vocal cords, post Laser surgery. And damn, the lesion is still there.
So, more Laser surgery on July 15th, or sooner-- he said if my Primary surgeon takes me back to OR before then to let him know and they will double team me again.

(Sometimes I get the feeling something else is gonna kill me, before my cancer does. Like anesthesia or pneumonia. I guess it's a toss up, what's gonna take me out first)

On the video today, we also saw that I am actively aspirating my Saliva & secretions .
Yes, he showed me.... Even not drinking anything for 2 hours prior, I am still aspirating my secretions into my airway. Really bad.

He looked at my poor Swollen face....And told me I'm Symmetrical! Swollen equally on both sides. Looked in my mouth. It's like a war zone in there ,.... He also showed me that the Thrush inside my mouth, has spread down my throat...
Well, go figure-- I'm now on my 4th course of antibiotics, since end of March ( 3 courses for my aspiration pneumonia. And now on them, post surgery)

Medical Oncology-- he wants me in to see my MO , ASAP. My case went back to Tumor Board end of last week.... So, they are already talking... I volunteered to my surgeon that I'm willing to do more radiation. If they will let me.

I'm in too much pain and need to get to bed. Pain is firing all over my head. Sharp and deep.

Adios.
P.S. Multiple pathology reports are Pending. Not finalized yet. So, I'm waiting on those too.
Crystal

Now that you mention that I do remember you saying you love to cook and bake even though you don't eat any of it yourself. And wow on you doing competitions in the past! That's pretty remarkable! I make a mean homemade chicken and dumplins but I can't really take the credit for it. I found the recipe, it's not my own! Everyone I ever make it for loves it so it doesn't matter that I didn't come up with it! I'm also known for my popcorn balls around Halloween. What do you love making the most? I think pies are fun! I rarely do it but the smell in a house when a pie is baking just makes a person happy to be alive!

Awww I hate to hear you talk about trying to decide what's going to 'kill you.' I get it though you have every right to feel down with all that you have been going through. Just remember, we all can feel bad from time to time just as long as we don't park the car and stay there.

What is the aspirations caused from? Did they take tissue around or from the epiglottis during one of your surgeries?

If your in too much pain, I hope you're taking something for it. No need to be suffering if there's an alternative.

Much love,

Laura

Hi Crystal!

Haven't heard from you in a while! Hope all is good or as good as expected under your circumstances. Just letting you know I've been thinking about you and hoping for speedy healing.

Laura

NO. I'm not healing.... The left side Floor of mouth wound is Infected with yellow pus, I have fever, swelling and Heat in chin & neck,....

Edges of wound are Retracted and Open, not healing. Pus leaking out. Yuck.

See, this was side of my lower lip cancer which extended down into chin/ jaw, and my surgeon reminded me that I got a knock down Very Heavy dose of Radiation to that very specific site. ( they make it a heavier dose, at tumor sites).

As a result, the tissue there was robbed of blood supply and oxygen....and it's not healing.

I'm in a lot of Pain and All my Sutures are still In !!

Later,
Crystal

I also need to update about my pathology report, and I will..... But here's a taste of it "Residual tumor ( this is what was still there and actively growing back from April 11 surgery, just one month prior)
" Residual moderately differentiating Invasive squamous cell carcinoma, Keratinizing type. "

It gives it's dimensions. -- this tumor originated in Floor of mouth and grew up into my tongue Flap..... But here is the kicker-- the anterior margin ( front margin, which in this case is right behind my right bottom lip-- is LESS THAN 1 MILLIMETER)

okay, with my huge Primary tongue tumor, my posterior dorsal margin ( In the back)- was also Less than 1 Millimeter. Not good!!! You don't want that close a Margin in the back where it will recite and go down your throat-- Which is Exactly where my Recurrences were, Base of Tongue extending down.

Less than 1Millimeter is NOT a Clear Margin, my Radiation Oncologist told me. He said that's Way Too Close. He said that a Grey area.... It's too Close to be considered a Clear Margin.

It was yet another reason, with my Primary tumor, that I had to have Radiation. ( the other reasons were my tumor size of 6.3 Centimeters, and that I had PNI. )

So, what do you guys say, about this? This most recent tumor from Floor of mouth that invaded my tongue flap, also had a Margin ( front margin) of Less Than 1 millimeter.

Is a Clear Margin still Clear, if it's that Close?? My Radiation Oncologist says no, it's not clear. It's too Close.

Also, please read my previous post here, about 2 of my surgical sites Not Healing & being infected. Edges of wound are retracted and not closing up. Another bad sequelae of doing surgeries after Radiation.... But we had no choice,!!!
But now, I have a nasty non healing wound and it's so painful.

My surgeon re emphasized to me that this was a Extensive surgery, to the entire Floor of mouth and to tongue flap, and that he went 2.2 Centimeters down through my Floor of mouth.
The area that's not healing took a very Heavy dose of Radiation, in early 2018. For the specific tumors that were there then. So, the tissues there are damaged.

Crystal

So good to hear from you! But....I wish you had better news to give! I'm so sorry Crystal! I can't imagine what you're going through. Has anyone mentioned HBO treatments? My Mom had breast cancer and the incision under her armpit where they took lymph nodes wouldn't heal and they had her do HBO treatments to help close that wound. She doesn't think they did anything but that wound didn't heal until she did those treatments.

I too am surprised about your margins being so narrow. I'm going to guess they did that to save you some tissue and try to preserve the functionality of your lip/floor of mouth. I'd say ask the doctors at your next appointment because that is very odd!

As far as pain, you know what I say, don't be afraid of taking the pain medication! I'm still on my oxycodone but it's out of necessity. I can't sit at work and be dealing with an earache and/or throat pain!

I hope your dogs are a source of comfort for you right now. My cats kept me company when I was home and laid up on the couch.

I’m sorry for your troubles, Crystal! I had thought about HBOT also, but where I was at, several locations, that all my doctors were against it due to active cancer. It wasn’t until i was clear of cancer that they did it. There are other doctors, none I know, that didn’t follow that rule or it’s assiciation with cancer. My first time with HBOT I did have a recurrence afterwards, which could have been a coincidence, but has me as a believer.

Thank you Paul !!

You have been so good to me, following my crazy ordeals.... I really appreciate all your great,advice and support! It makes a world of difference to me. Just believe me, it does.

My surgeon did not mention trying HBO dives-- it may well be because of the association with "feeding" active cancer/ causing recurrences. And obviously, I have a relapse now of my SCC.

And I've had to put so much stuff on hold--- my Modified barium swallow study ( my 3rd one) can't be done now, until I heal. Nor vocab my next esophageal dilation.
I guess I could get my eye appointment though. ( I have Radiation induced Cataracts, from Scatter. I'm a tiny person and I see how this could happen)

My GI doctor emailed me today and said the Endoscopy Unit has been asking about me & that they miss me bringing them desserts !! He told me that he's praying for a speedy recovery....
I go back to my surgeon June 26th. All sutures stay in ( most are the dissolving kind) and my tongue Flap is still sutured down, to my bottom lip. I can see several of the sutures on top. A tied one is on top of tongue, but he's not going to release anything yet, because of not healing.. I've no idea what it will look like, when the Tongue is freed ...

But I can say right now, that there is Nothing Normal, anywhere in sight, in my mouth.I

Crystal

Hi Laura,

What did you ever find out about the breast lump? Have they biopsied it yet? Please let me know...

Crystal

Hi Crystal,

I have the orders for a mammogram and ultrasound and the results of those will determine if I need a biopsy. I also have an order for an ultrasound of my thyroid as my PET scan showed a nodule there. I had my appointment with my oncologist and he says he doesn't expect scans of either one to show cancer. I guess I can count on that a little bit for piece of mind. I plan on scheduling those to take place sometime next week.

So what kind of yummy desserts do you normally make to take to your appointments? I've thought about doing this before but I'm always scared it will go to waste because people may not know my cleanliness in my kitchen. They don't realize I worked for 4 years in the kitchen in a nursing home and had to take classes on cleanliness and sanitation and all that jazz so I definitely follow safety protocols when I cook or bake.

Laura

Laura,

I'm glad you are getting the imaging done. Glad the oncologist reassured you, as well.

I have very suspicious "hypodense" lesions on my Spleen, which are suspicious for metastatic cancer. They found them during a CT with contrast, last year in the emergency department. But no one else seems concerned, so I've ignored the issue..
And it's been a year, since I've had any blood work! So, I need to get back in with my Medical Oncologist soon I guess.

The swallow technicians are actually Amazed that I can swallow liquids. They told me that somehow, I taught myself to swallow using other muscles. They said it's remarkable really.

But, I am " Aspirating with Every Swallow ", they said. I've had 5 Aspiration pneumonia and now trying to heal from surheries, so I can get my next MBS swallow test and dilation also.

Crystal

OMG ALL those desserts sound AMAZING!! Did you say butterscotch cashew brownies?? Amaretto cheesecake?? Man desserts are my absolute favorite thing ever! Some people are not 'dessert' people but I don't skip dessert ever! I know most of it isn't good for you but I always say, the people on the Titanic that skipped dessert sure wish they hadn't so HAVE THE DESSERT! One of my all time favorite desserts is the blondie at Applebees. What sucks is a lot of things don't taste the same and with saliva issues I don't enjoy soooo many foods and especially desserts that I used to so whether it still tastes the same is something I have yet to find out.

And yes I remember that you said you can't eat anything and that you aspire liquids which is why you've had pneumonia. I just hate that for you but it's amazing that you still bake when you can to bring happiness to everyone that enjoys your efforts. That really does show that your dedication to continuing to live the best life you can even with the setbacks.

I hope you've had some healing with your sutures to your mouth and lip and that things are improving for you.

Hi Laura,

Ha! I'm actually watching a Baking competition in TV right now!

Yes, all my sutures are still in-- I can see the ones on top of my tongue flap, which is still sutured down to my bottom lip. One of them on top, is a tied one.
The pain is not as intense now, but I still have some infection in there.
I go back to my surgeon June 26th.
Radiation Oncology-- I see my R O in July ( the 19th, I think)
And I'm awaiting an appointment with Medical Oncology

And I have eye appointment coming up for the radiation- induced Cataracts.
I see my PCP in July, for year check up....and I have my inpatient infusion next week ( I think)

Anyway, what have you found out about the breast lump?? Let me know.

Crystal

Hi friends,

It's over a month now, and my tongue Flap is still sutured down to my bottom lip !!
May 14th was this latest surgery-- very extensive, my surgeon Gutted my front Floor of mouth, going over 2 Centimeters Deep in places, trying to get Clear Margins from my Invasive tumors. The tumors originated in Floor of mouth and as they quadrupled in size, they grew into / invaded my tongue flap.
All told, this was my 4 recurrence to tongue flap... 5 or 6th overall recurrence. ( plus it spread twice to left lower lip, and extended deep into my chin.

But this recurrence is 1 year after my Radiation treatments. Yeah, really nice....

I go back to see my surgeon June 26th. On the day I say him Post Op, I had a fever, heat & swelling in face , neck. chin-- and one of the wounds as very infected. Yuck, yuck ..!!
Also, the edges of the wounds on left floor of mouth were Retracted and open-- Not healing. Why ? Because that's exactly where I got a super heavy dose of Rads, because of the cancer there (it was so deep in my chin/ jaw, it was inoperable, so they had to really target it with radiation. Surgery After Rads can be a huge problem, as I am showing.

So, over a month with sutures and my tongue sutured down To My lip .
I've no idea what it will look like when released.
I also don't yet know what treatments in doing next.
I see Radiation Oncology in July ( he is a great doctor!! I enjoy seeing him) and I'm awaiting Medical Oncology.

My swallowing ( I can do liquids only) is terribly difficult, and I'm due a Modified Barium Swallow test, but my GI doc says I have to heal from my 2 surgeries first. And then another esophageal dilation.

So, I wait to see what is next for me.
Crystal

my neo-tongue was sutured to the floor of the mouth. That's the plan, ie, there is no plan to release it anyway

Hi Michael,

I answered more thoroughly on the Introduce yourself thread...

If you read my Signature, you'll see that my Primary surgery was in 2017. ( glossectomy, mandibullectomy, neck dissection, etc)

But this year, I've had to begin all over again Because My Cancer Has Returned .

I don't know what's coming next because I have to first heal up from these two surgeries from April & May. But I can tell you my calendar in full of appointments. And I have very complicating comorbidities, like my underlying Genetic Immune Deficiency. Yep, I was born Immune deficient. Every 28 days I am admitted to the hospital to get my infusion of intravenous Immune Globulin. That replaces a small part of what I do not produce...

Anyway I am quite tired now!! And because of my continuing aspiration pneumonia problem, they are also discussing taking me off of my liquid diet. And that's all I have left !

I will get through it somehow..

Crystal

Hi Michael, and others,

I saw my Radiation oncologist last week for 3 month clinic visit and to discuss the fact that my Invasive SCC Relapsed, one year Post my Radiation treatments.... Not good.

He is worried and reluctant to do a second round of Rads ( and I myself volunteered to do more Rads)---- one thing he is worried about #1. He said it could rupture my Carotid artery & I could Bleed out from it.
#2. Over & over he said " Dead tissue, Dead patient" he repeated it 5 times! See, one thing that happened with my recent 2 surgeries, is that one side of floor of mouth wound Did Not Heal . The wound retracted, opened up and then became infected. Deep. My chin/ neck became deep red, hot, swollen.... I had a fever and bad pain.... Anyway, that very specific site was one that received a very heavy dose of Rads, because of the Tumor there, in my Mandible.... Dead tissue not healing.

#3 The fact that I was admitted Twice, during my treatments course. For pneumonia, dehydration, fevers, failure to thrive ( I went down to 69 pounds during my Radiation treatments )

He said I am very High Risk for Recurrence secondary to (a) the Multiple recurrent nature of my cancer and ( b) Very close surgical margin . From my Path report " Minimum tumor free distance, 1 millimeter, anterior mucosal margin. "

A 1 Millimeter margin. ??? Too Close !! He & I agree that that's more like a grey area, than a clear margin.. It's just too close.

He talked about the possibility of starting immunotherapy--- and he also took my case back before the Tumor Board. But all of them are scared and concerned about using immunotherapy in me, a person who was born with a genetic Immune Deficiency!

So, yes, I am immune deficient. I recently had Labs done, and it showed how low my white blood cell count is and remains. My Lymphocytes are Low, and that's what is driving my white count to be so low. So here is another big question:
Do I even have enough of an immune system, for the Immunotherapy agent to Work With ??

My Voice & Swallowing disorders surgeon saw me days later in his clinic, and he said the Immunotherapy is a Risk, but so is letting the cancer come back.....

This was my 6th recurrence of my Invasive SCC. Or was it a new Primary tumor?? It doesn't matter. Either way... It was invasive and had deep positive margins. It grew from Floor of mouth-- it grew so large, very fast-- and it grew into / Invaded my reconstructed tongue flap!!! So, my Primary surgeon had to excise the floor of mouth, extensively from left to right and had to cut 2 large holes from my tongue flap.
the first biopsy of it, in late January, was abnormal but benign. Then after the biopsy it grew very fast and quadrupled in size! In April, it biopsied Invasive SCC, keratinizing type. Ugly... Bad... And I bet it's coming back yet again. This was #6. My Primary enveloped my tongue, 6.3 Centimeters, invaded my tonsil, salivary glands, gumline , mandibule... Then 5 months later-- Dorsal tongue ( on tiny sliver of my natural tongue) , then Base of Tongue, invasive extending down throat. Then 2 tumors to bottom lip, so feel into chin he could Not get it all. A floor of mouth 1.
And now After my Rads-- this new aggressive 1 floor of mouth / into my Flap.

I'm quite tired...

Crystal

Hello friends,

Interested to hear it anyone here has had this diagnosis applied to their case-- Field Cancerization, also called Field Carcinogenesis.

My case was taken back before the Tumor Board recently, because I had a New Primary invasive SqCC develop early this year-- which came up Only 1 Year Post my Radiation treatments.

This is tumor #6, in a 2 year period. #6....

The January biopsy of it was " Atypical squamous proliferation, complex architecture" It was abnormal but " not cancer" at that point. But after the 2 punch biopsy-- it took off and quickly quadrupled in size. It grew from front Floor of mouth and it grew into / invaded my reconstructed tongue flap. It grew so large I was chewing on it! And pain deep into jaw and neck... Cancer pain returned.

What a mess.... Now, my tongue flap is permanently sutured down, Flat, to my bottom lip. It Cannot be released because of the 2 large holes cut from it to remove tumor. Floor of mouth was literally gutted out, entire front. Bone exposed, ...tongue flap covers a lot.
My CT showed the tumor, enhancing in my front flap & in floor of mouth.

My Radiation Oncologist, who is one of my favorite guys !!-- Has put the new diagnosis on me, that of Field cancerization...
I can't even get a clear NED out of him, partly because of the field cancerization... But also because the front margin of this new invasive tumor was ... 1 millimeter. ( Minimum tumor free distance, 1 millimeter, anterior mucosal margin). That's waaay too close !!!
" She is at High Risk for recurrence secondary to (a) Multiple recurrent nature of her cancer (b) Very close surgical margin. "

What's next, I dunno.

Then last week I had my cancer Modified Barium Swallow study, which once again showed the severity of my aspiration problem-- it showed I am Aspirating With Every Swallow., no matter if it's thin liquid, thickened liquids, or pudding ... And now she told me no more pudding consistency of anything, because it went down, sort of, and then it came back up! ( my esophageal stricture blocked it). And of course some went into my trachea. ( in March/ April, I had E. Coli pneumonia, from aspirating my stomach contents)

So, my SLP told me last week as we watched the videos of my swallows-- that I have to decide When to Stop taking in orally, completely. No more liquids, ...go NPO completely.

I'm already 100% dependent on my G tube, but I'm fighting taking this last step and having to give up yet another very basic life functions, that makes us " human"-- drinking by mouth. I had to give up Food in late March 2017. I even remember the last things I ate ( or tried to eat).

Anyway, that's a little bit of me lately ( oh, and I have another case of C. Difficile infection. Refuses to go away).

If anyone else out there familiar with the concept of Field Cancerization, let me know. It's too lengthy for me to write about it tonight. ( and you are thinking " thank goodness! ") LOL

Crystal

I picked up quite a few articles about “Field of Cancerization I posted. You can look for them in search by typing the word you want!

Thank yoy, Paul B,

This morning Scheduling called me to tell me I'm having an emergency esophageal dilatation, Wednesday . August 7th. It's based on the cancer MBS swallow study I had done last week August 1st.
We already knew that I'm aspirating " With Every Swalliw", but also, the Pinpoint stricture in my distal esophagus is again obstructing liquids, thick and thin, and it has to be opened. Or, attempted to be opened. We will see how it goes Wednesday. Once again.
My last one was April 9th.

For this one, they apparently had to bump someone else out of the schedule, who was having an elective produre, and then put me in..

I can't express how very thrilled I am to be going under and coming out, in pain yet again, this year... Sigh !!!
But whatever it takes to help.... This stricture has been a dangerous one to try to open ( he has to thread a Guidewire through it, just to gain access. Very tight... Bleeding & ulcerated) and he is constantly worried about Perforating me-- because over the years I've sustained 2 serious Perfs that requires extended hospitalizations...by 2 different surgeons.

Paul, I'm curious , is Field Cancerization one of your diagnoses as well? If so, has it been a matter of watchful waiting and increased surveillance, or was some kind of treatment used to " prevent "?

Thanks!

Crystal

Crystal,

I’m glad you’re having the dilation sooner rather than later, and hope it helps your situation. I’ve heard of perforations this can cause. In my case, I never had any in the 8 or I had. I’m due for another one myself, but have been busy with health related matters. Mine weren’t bad, and after recovery I was soon eating, and drinking coffee. At the same time the gastric doctor does the throat he does a biopsy of the digestive system for the Barrett’s esphogus I have. probably caused by the acid reflux.

As far as Field of Cancerization, I’m not sure! I think my cancer is more HPV related, although I was never tested with cracks in my health and system. It’s usually smoking or other relations, and has been a while that I mentioned it. For some reason or many reasons, my cancer was allowed to spread, even after having chemo, radiation and surgery multiple times, but this it past January i’m considerate Cancer Free after 10 years
It took to be clear for 5 years!

I’ve always been watchful and waiting! I discovered 6 of my 7 cancers. The other was found during a CT Scan my new dr ordered for surgery, and found it when he asked if I had new swelling since my surgery schedule, and I was right. It was the new spot! I had looked into cancerization articles and found a chemo they were using, and others things. The chemo later failed, so that put a end to that for me, but I’m always keeping an eye outfit mew treatments and long term survivorship!

Good luck with everything!

PaulB,

You have been so nice to answer my questions, so thank you for that!

I hope you are doing as well as you can, considering everything. Did you have to have hip surgery? I wasn't quite clear on what happened....

Take care!

Crystal Jenidoll

Thank you Crystal! Yes, I had a left hip surgery in the beginning of the month, which hasn’t gone well recovery wise. Now, tomorrow I’m having re/surgery to get the infection out or reconstruction! of the hip!

Thank you for your thoughts!

On my, Paul...
Oh no. You have been through so much, and you surely don't need this complication.

With you, I would be willing to bet that you too, are immune compromised/ immunosuppressed, both from years with a cancer burden & also from the treatments ( chemo & Rads).
Thus, you are more prone to infections.

I am storming the heavens tonight, Paul, with pleading that everything will go well tomorrow, and that you can rest comfortably soon. And start to heal.

Paul, I too will have to live in a facility eventually. Because I have No One willing to help me and he a caregiver, whenever I cannot do for myself anymore.
Right now I live in a condominium that has 24 stairs! Yeah, 10 steps up the front ( and back) from ground into the condo. Then 14 more steps to my upstairs bedroom & bath.

Please let me know how you are, whenever you feel able.
And know that you are in my thoughts !!

Crystal

Hi Crystal,

I finally have some time to write back as I’m hooked up to IV antibiotics, and have to keep my right arm still, and my left arm is paralyzed.

Some of your ailments are the same as I had like c-diff back in 2010 as it was caught in the nursing facility as with other infections, so my immune system is not 100 percent, but it’s much better than it was.

Surgery went well, but it was more painful than the first when they said it wouldn’t be. Pain meds were more delayed than I thought, but was so happy when I arrived to my room and was already receiving as much as I could, thenurse wasn’t that nice cause I kept asked for pain relief. There still seems to be an infection in the leg, so at some point I may have to wear antibiotics when and if I leave here for a nursing facility. I have Medicare, but took out a supplemental plan which I have to look over as far as my coverage being I live alone!

24 steps is slot let alone two for myself!

You’re better off getting a jump on everything before you can’t or it becomes more difficult, but would say you’re handling things very well!

My brother bought a new hospital bed for my mother the type you describe and can fold into a seat, but instead of coming home she became a permanent resident of that heath care

Hello dear Paul,

I am getting my new Hospital bed, This Friday!!! Free, from my local Cancer Services.

I am strongly hoping that your Pain is some diminished, or under better control. And that they get a handle on the Infection and that you don't need more surgeries. Enough already, right ??!
Please let me know where things stand ( pardon the pun!)-- As you can ...
I am thinking about you, and hoping for Comfort and we'll deserved & needed pain free Rest!!

Please let me know how you are, Paul.

Crystalj

That’s great you got a hospital bed!!! You’ll find it easier for your comfort! As I mentioned, my brother just bought one for my mom, but she
went into nursing care before she could use. It’s brand new, but too much bed for me, I think? I have a regular electric bed, so I used that. The hospital bed is like 600lb and tooki four young men to drag it in!!

Don’t go crazy moving anything yourself. Hopefully there will be enough people to volunteer!

I’m happy for you, and hope it makes life easier!

Be well!
Paul

Hi Crystal!

I see you're still active on here! I'll have to take more time to read all your going-ons. I did see you had your surgery and seem to be recovering.

Well I don't know if you remember but I had a mass in a breast, turns out I have breast cancer now. So all this time I was worried about an oral cancer recurrence, and instead I get a secondary cancer! This one isn't a huge surprise though, it's the same type of breast cancer my mom got when she was 50.

I will be seeing a breast surgeon soon to get the breast cancer journey started. They will be calling me back with an appointment.

Our journeys continue...unfortunately!!

Virgomomof3boys,

I’m sorry to hear of your recent diagnosis of breast cancer! I wish you the same strength you had with oral cancer to beat this disease!

Good luck with everything!

hugs to you virgomomof3boys. my heart hurts for people on this board, they have become a little like family.

Thanks Paul! The upside of having a previous cancer, is it's really not as scary this time around. At least that's how I'm feeling at the moment. I know there will be completely different experiences with this one (such as chemo). The best thing I've learned from cancer the first go-round is that we cannot control our cancer, only our attitude about it. I also feel like I went through so much emotionally from it, I came out stronger which is helping me for this one.

Thank you Connie! How has your husband been lately? I know you were having a lot of problems with his stubbornness towards treatment and such. Hopefully things have been improving for him and you both.

thanks for asking!

I posted about him back at drinking the other day. I was asking if it was a big deal after OC. He's as stubborn if not more than ever. But so far, after a few scares of recurrence, so far no new cancer.

Take care and keep checking in!