OCHSNER CANCER CENTER IS HUGE

Had my first appointment with the surgical oncologist at Ochsner Cancer Center in New Orleans today.  My Sister-in-law drove me there as I am not able to drive due to the amount of pain meds I'm taking. 

The hospital is very inpressive.  Everything looks new. Most importantly there is a head and neck cancer center and my doctor is a specialist in that area.  He was straight up with me and explained in detail what was going to happen.

He reviewed my records and then looked at my tongue and throat.  He said that it was a small tumor but I told him it was growing fast.  He set a date for surgery for the 10th of May.  He will be removing the infected tooth as well as half of my tongue and a lymph node.  He will reconstruct my tongue with a flap of skin from my arm and replace that area with a flap of skin from my thigh.

I will have a trach for breathing and a PEG tube for eating. Will be in ICU for a few days and then able to go home within 7 to 10 days.  He said I may never be able to eat by mouth again.  That really got me. I kept it together till then.

He assured me that surgery is my only option for this cancer.  I was hoping for Proton Therapy but he is the third doctor who said that was not an option.

He wanted to order a PET scan then changed his mind and decided on an MRI.  I asked if I could have that done in Houma as they have an open MRI.  He really didn't want to do that but I stressed to him that I would not be able to stand the closed MRI so it would be a waste of time.  Still waiting on the results of that request.

He didn't take into consideration that I would need hyperbaric treatament for the tooth extraction as it is invasive into the jaw bone.  I will call and inquire about that today.   I would need at least 20 prior to the procedure and more after.  That would put the surgery back from the original date. Don't know what to think about that. 

There is so much information to remember.

INFECTED TOOTH

 My INR number today was 2.4 which is good.

I had to call my ENT doctor and my dentist today as one of my teeth seems to be infected.  ENT never called me back.  Dentist called and I explained what had been happening with my health for the last few months.  He ordered some antibiotics and pain meds and referred me to an oral surgeon for removal of the tooth.  He reminded me that I will need hyperbaric treatment prior to any dental procedures and to be sure and tell the surgical oncologist at Ochsner Hospital on Tuesday when I see him for my first appointment. 

The ear pain is really severe even with pain meds.  It seems that the tooth is what is causing the ear pain and not the cancer on my tongue.  The lump in my lymph node also hurts but not as bad.

IT IS SQUAMOUS CELL CARCINOMA AGAIN

 On  April 12th I met with my ENT to go over the results of my biopsy.  It is Squamous Cell Carcinoma.

Test shows that it is negative for HPV 16.  Not good.

He referred me to MD Anderson in Houston as I had requested because they offer Proton Therapy.

For 2 whole days I was on the phone with various people who I was told could help me with getting registered and also to apply for some assistance with lodging and financial assistance.  As it turns out no one could help me and I was told that this was going to be an expensive experience.  Housing is very expensive in this area and free housing has a waiting list 6 months long.  The last person I spoke with advised me to contact the American Cancer Society.  By this time I had made up my mind that I was not going to be a patient of MD Anderson.

I got online and researched cancer centers in the New Orleans area.  I was pleased to see that there was a center that performed types of surgery I might be needing.  Spent a whole day searching for just the right doctor and clinic.  At about midnight last night I made an appointment by using their phone app.  I will be seeing Dr. Hasney at Ochsner Cancer Center in New Orleans on April 25 at 3:30. This hospital is only an hour from my home.

The lump on my tongue is spreading and has grown into my gum line.  We need to hurry this process up before it is too late. 

TONGUE BIOPSY WENT WELL

Had my tongue biopsy yesterday. Will get results in about a week.  My ENT wasn't kidding when he said it was going to hurt.  I have pain pills and liquid hydrocodone as well.  Also have to take an antibiotic to keep bacteria at bay.  He told my brother that it looks like an ulcer.  Not sure an ulcer would make my lymph node swell up and give me a constant earache.  

Come to think about it my ENT never once labeled my cancer when I had it 5 years ago.  He never called it a tumor or ulcer or anything.  I guess he tends to stay away from those scary words.  However, he did tell me I had cancer at the base of my tongue.

I get back on my blood thinner Warfarin tonight.  Have a follow up appointment on the 12th at 11:00.

TONGUE BIOPSY SCHEDULED FOR MONDAY THE 3RD OF APRIL

Had another appointment with ENT doctor today for some pain meds.  My earaches are getting worse.  Shooting pains up the side of my head.  He told me that was a nerve.  The lump on my tongue hurts all the time especially when I eat and swallow.

Asked for Hydrocodone.  He asked if I wanted pills or liquid.  I chose pills.  However, I will prpbably need liquid after the surgery as it will be hard to swallow a pill.  He said he might cut the lump out during the biopsy and will also biopsy the lymph node.  Also warned me that this is going to be very painful for a couple of weeks.  Only eat soft foods. 

My brother will transport me to and from clinic.

I get off of Warfarin tonight for 5 days.    

APPOINTMENT WITH CARDIOLOGIST FOR WARFARIN APPROVAL FORM

Had a followup appointment with my Cardiologist yesterday.  Had an EKG which he said looked good.  He gave me the signed form of approval for me to get off of Warfarin for 5 days prior to my surgical biopsy of my tongue.  I delivered the form to the ENT clinic after our visit.

He made no further appointments to see him.

WARFARIN BLOOD CHECK NUMBER 5

Saw my ENT doctor a couple of days ago concerning my very painful tongue and earache.  He looked at the lesion on my tongue and said he wanted to do a biopsy and I would have to be put to sleep for the procedure.

The lesion is on the left side of my tongue and is red with a white center. He thinks the lesion is causing the earache. Also told him that the lump on my neck where the CAT scan showed it in the lymph node has grown a bit and is changing shape to oblong and not marble size.  He gave me antibiotics and mouth rinse to use for 7 days.

I had a CAT scan on this area a couple of months ago and there was no cancer shown.  This is very strange. I think the lesion is the primary cancer and spread to the lymph node.  The earache and lymph node lump is exactly how the cancer started 5 years ago.  The primary then was at the base of my tongue and could not be seen except on scan.  This lesion now can be seen although it is in a location that is hard to get to.

Had my INR checked at the cardiac clinic and the number is 2.6 which is good.  I informed the techs that I will be having surgery/biopsy on my tongue soon and would have to get off of the blood thinner for 5 days prior to surgery.  They said they would be following and advising me throughout this time.  I need to get approval from my cardiologist who I am seeing in 5 days. 

WARFARIN BLOOD CHECK NUMBER 4

 Had appointment at the a Cardiac Center today to have my blood test.  My number was 2.7 which is good.  The modifications made to my diet and meds have corrected the high number of last week.

I was encouraged to eat greens on a regualar basis in small portions and to continue taking half a pill on Mondays and Thursdays.

CIRCUMVALLATE PAPILLAE

 A few days ago I noticed some bumps on the back left side of my tongue.  They are painful when I eat.  I used my finger to feel how big they were as they can not be seen.  They are located where my tongue touches the back of my throat.

Back when I was going through cancer treatment I had some bumps break out on my tongue that were noticable.  My ENT said they were called Papillae.

Typically, small bumps (also known as papillae) cover the surface of the back part of your tongue. Between the papillae are your taste buds that help you taste foods. Usually, these papillae are pretty unnoticeable. But sometimes, they become enlarged and can cause you pain.

It's not always clear why this happens, but it may be related to stress, hormones, or particular foods. Although they can be uncomfortable, papillae bumps aren't serious and usually clear up without treatment and within a few days.  A dry mouth can also contribute to swelling of your papillae.

Other potential causes of bumps on the tongue include: Human papillomavirus (HPV): This is a viral infection that is spread by skin-to-skin contact. It causes warts and may affect the genitals, mouth, or throat. Canker sores: These are painful, red sores that can occur anywhere in the mouth.

While uncommon, bumps on the back of the tongue can be a sign of oral or tongue cancer. These wart-like bumps — or squamous cell papillomas — can look white or red and may be benign. Only a doctor can diagnose an unusual bump as cancerous.

If you notice them for more than 2-4 weeks or if they are growing, you should seek medical attention.

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WARFARIN BLOOD CHECK NUMBER 3

 Had appointment with the Cardiac Clinic to have my blood checked.  My number was 3.5 which is too high.  Was told to take only half of my warfarin pill tonight.  They explained that I was to eat as usual, not to overdo greens, and they would control the medication accordingly.  

I left and went grocery shopping for veggies.

WARFARIN BLOOD CHECK NUMBER 2

 Had my second visit with my Warfarin Team at the Cardiac Clinic today.  I will have to go every week for a finger stick to check my blood levels for the blood thinner I'm taking for A-Fib.  My number last week was a baseline number of 1.0.  Today's level was 2.5 - right where it is supposed to be.  I need to keep it at 2.0-3.0.  After 3 months I will be able to bring the testing machine home and check it myself and call it in to the clinic.  

There are so many foods that I can not eat due to the high vitamin K content which hinders the blood thinner from doing its job.  So no leafy greens which is full of vitamin K.  The total amount of vitamin K I can have in a day is 80 micrograms.    A cup of spinach contains 988 micrograms.   A cup of boiled cabbage contains 163 micrograms.   A cup of brocoli contains 220 micrograms.   I'm having a hard time finding the right foods to eat.  I'm not a meat eater so need to get some protein from mainly fish and seafood.

This blood thinner is the second one I have tried and not having any reactions to it.  The first one made me very dizzy and unstable.  Haven't had an irregular heartbeat in 3 days.  Haven't felt this good for the last 3 months.  I hope this lasts.

CARDIOLOGIST APPOINTMENT 2-14-23

 Had appointment with Cardiologist this morning.  Had an EKG which he said was OK.

Went over the incident with the CAT scan ordered by my ENT and how the premeds caused me to go into A-fib.  Told him I will not take any contrast or pre meds/steroids again.  

Informed him that I am still having A-fib episodes daily.  He changed my heart meds from Digoxin to Diltiazem.  He also put me back on the blood thinner Warfarin which he had originally prescribed for me. Have to attend classes at the clinic for a few weeks to learn how to use the blood thinner and equipment to monitor.

He explained that I should not worry about having a Cardiac PET scan with radioisotope as it is not a contrast.  I agreed to have one.  He said to schedule it when I am ready.

He said that if none of these things work he would order treatment of atrial fibrillation using intravenous infusion of certain meds which I would have to be in the hospital for this procedure.

Wants to see me back in 6 weeks.

FAMILY DOCTOR VISIT

Had appointment with my GP today. Informed him of the kidney pain I've had for the last 2 weeks since the CAT scan ordered by my ENT doctor with contrast and pre meds but no infusions.  I asked for a urinalysis and x-ray which he ordered.  Results showed no blood in urine ruling out kidney stone.  X-ray showed no stones in kidneys.  Now I'm really concerned that there is severe damage to my right kidney as the pain will not go away.  I believe it is damage from not having an infusion prior to the CAT scan.

My GP referred me to a Urologist but warned me that he will want to do a CAT scan with contrast.  If I refuse he may want to do a Cystoscope. Not happy about that.  

I asked if he could give me something for the kidney pain and he agreed to give me some Hydrocodone.  Warned me not to take it at the same time as the Xanax which I take to stop the A-fib attacks.

Informed him that my fasting blood sugar this morning was 177.  He said we may have to up the Metformin but did not order a stronger dose. 

Told him I am tired all the time and stay in bed all day.  Also have a little nausea which I attribute to the kidney problem.

Showed him a print out of the results of my CAT scan of my head and neck taken 2 weeks ago.  We went over the results.  He did not examine my lump on the left side of my neck.  I told him that I feel it is a recurrence of the cancer I had 5 years ago.  It's at the same place and is accompanied by an earache just like before.

Informed him about the heart doctor's order for a cardiac CAT scan several weeks ago.  Cardiologist ordered three hours of infusion to protect my kidneys.  I am allergic to the contrast so need to take pre meds prior to scan.  Could not complete the scan as I had the wrong premeds.   Sent me home and took me off blood thinner till the issue with the lump in my neck is resolved.  I see him next week to decide how to proceed with my heart condition.

Ended my session with the GP by me telling him that I feel that I am dying.  He said no you're not dying.  I said it feels that way.

 

ENT FOLLOWUP ON RECENT CAT SCAN

Had followup appointment with my ENT doctor today to go over the results of my recent CAT scan of my head and neck. It turns out that I misunderstood the results of the lump on my left side of my neck.  The results show a 5 mm stone within the right submandibular salivary gland not the left.  ENT told me that I've had that stone since he first diagnosed me 5 years ago and not to worry about it. 

They don't know what the marble size lump is on my left side of my neck in a lymph node.  It shows no tumor/cancer on the CAT scan.  That could be that it is still too small to show on the scan.  

Info found on my research:

Due to the physical limitations, however, the minimum lesion size that can be measured with CT is about 3 mm.  

Normal CT images showed high false-positive rates of incorrect interpretation 28.2% of the time.  CT scans often miss soft tissue injuries and other abnormalities.

It's important to note that some cancers may be overlooked on a CT scan. Lesions may be missed for a variety of reasons, including location and human error. Still, CT is more sensitive than a simple X-ray. A CT scan can find lesions as small as 2-3 mm.

My ENT said that if it grows to return to his office for further testing.  In my mind there is still a possibility that it a recurrance of the cancer in its pre stage.  Symptoms are the same as 5 years ago with ear ache and tenderness on the lymph node.  Remember... I've been here before.

He referred me to Orthopedic Dr. Chris Cenac for treatment of the spinal stenosis.

He wants to just wait and see what happens to the atrophic thyroid.  I am already taking thyroid meds for that.   

I explained to him about the reaction I had to the pre meds I had to take prior to the CAT scan of my head and neck.  The steriod pill was one of the pills in the pre meds that threw me into A-fib.  I called the clinic and spoke to the nurse and she said to drink lots of water to flush the kidneys out.  I took some Xanax which stopped the A-fib.  I should have had an infusion prior to the scan which would have protected my kidneys.

My kidney functioning gfr number went from 39 to 37.  Normal is above 60. 

I told him that I will no longer approve a CAT scan with contrast or take any premeds ever again. 

CAT SCAN 1-19-2023 RESULTS

Had blood work and then CAT scan yesterday at TGMC.   Got results today.

FINDINGS OF CAT SCAN OF HEAD AND NECK - 1-19-2023

1.  Atrophic submandibular glands and stable 5 mm stone within the right submandibular (salivary) duct.

     - Stress can result in salivary gland hypo-function, which will             reduce salivary flow.

     - Salivary stones and tumors can be smaller than a marble or                 larger.  Most aren't cancerous, but if left untreated can develop           into cancer.

2.  Degenerative changes in the cervical spine, especially C6-7, where there is moderate to severe spinal stenosis.

     - If left untreated, spinal stenosis can result in permanent damage         to the spinal cord. This could cause bowel and bladder                         incontinence as well as paralysis.

    - When the spinal cord gets injured at C6-C7, pain, weakness,             or paralysis may occur in one or more parts of the body below         the injured level. Reduction of bowel, bladder, and/or breathing         functions may occur in some cases. Typically, nonsurgical                   treatments are tried first to control the symptoms of C6-C7                 injuries.

3.  1 cm nodule right lobe of the thyroid, decreased in size. Remainder of the thyroid somewhat atrophic.

     - Thyroid atrophy is the end result of either severe thyroid                     damage or total loss of pituitary stimulation.  The possible                 causes are: (1) irradiation (2) atrophic auto-immune thyroiditis.

So I was wrong about this lump being a cancer recurrence.  However, there are some things to be concerned about in these results.  Notice how the words "stress" and "radiation" keep popping up as causes.  

I am relieved that the cancer has not returned.

CANCER CENTER APPOINTMENT WITh NEW ONCOLOGIST

Had visit with a new Oncologist today for my one year check up.  He examined my lump on my neck, looked at my throat, and took a brief history of my last cancer 5 years ago.

He asked if I had been scoped and I informed him that my ENT doctor did so a week ago.  He said that he would prefer if we continue to allow the ENT to do the scopes of my throat as he is not comfortable doing so.  That made me like him immediately.

He discussed the course of action he would take if my biobsy comes back positive.  I knew what he was going to say... surgery.  I asked about Proton Radiation Therapy and Immunotherapy and he was not for either one of these.  So it would have to be surgery to remove the lymph node completely.  No radiation.  He did not mention chemo.  He will be leaving the cancer center in April so I will be seeing another doctor when I return in 6 months.  All my future care will be through my ENT.

On leaving he said to me that he did not think that it was a return of the cancer I had 5 years ago but could not elaborate on why I had this lump on my neck in the same place as before as well as the ear ache, just like before.

Tomorrow I get my blood work and CAT scan.

HAVING A CAT SCAN ON MY HEAD AND NECK - HERE WE GO AGAIN

Saw ENT today and he examined the lump on my neck.  He ordered a CAT scan but said that he was not too concerned about it as it was a small lump.  It is the size of a marble.  He said that it could be from an infection or illness of some kind that my system was trying to fight off.  I have not had an illness except for the problems with my heart which is not an infection.

I did some research and this is what I found.

  

Swollen lymph nodes are a sign that your immune system is fighting off infection or illness. Swollen lymph nodes are more likely to be benign than malignant. Benign means the lymph nodes don't contain cancer cells.  Benign lymphoma can sometimes turn into cancer, although it is not common. 

There is a link between stress causing swollen lymph nodes and mental illness. Swelling lymph nodes can occur when we face stress triggers and is a physical symptom of mental problems.

Chronic stress induces signalling from the sympathetic nervous system (SNS) and drives cancer progression.  

A persistent lateral neck lump in an adult should be considered malignant until proven otherwise.

At this point in time, it is my belief that my cancer has returned due to the extreme amount of stress

I have endured for 8 months while caring for my son.

I may be wrong but it is my gut feeling.

Stress is a killer.

LUMP STILL THERE

Completed the meds given by ENT doctor and the lump is still there.  Only shrunk a tiny bit.  Seeing doctor a week from today. Am going to ask for a CAT scan. 

The steroids and antibiotics have given me a rash in my mouth and my genitals.  Have cream for the genitals.  This is very uncomfortable.