CANCER SURGERY NOTES

 Squamous Cell Carcinoma 

left neck dissection and partial left glossectomy

prolonged dysphagia

 A p16 stain has been performed upon the slide with the largest area of tumor. Most of that tumor is p16 negative, but a minority portion, about 10%, is distinctly positive.

 COMPOSITE RESECTION LEFT HEMIGLOSSECTOMY FLOOR OF MOUTH TONSIL AND SUPERIOR CONSTRICTURE AND LEVEL 1B: permanent 10.  MODERATELY DIFFERENTIATED SQUAMOUS CELL CARCINOMA

Left neck dissection levels 2-4 - permanent

Throat cancer [C14.0]

Procedure(s): CREATION, FREE FLAP APPLICATION, GRAFT, SKIN, SPLIT-THICKNESS GLOSSECTOMY DISSECTION, NECK

TRACHEOTOMY INSERTION, PEG TUBE

PATHOLOGIC STAGE CLASSIFICATION

(pTNM, AJCC 8th Edition) : pT1 pN0 pMX

T = Tumor

N = Node Involvement

M = Metastisis

MX means spread cannot be determined. 

CANCER UPDATE - THE LAST 12 MONTHS OF MY JOURNEY BATTLING THIS MONSTER

I don't know where to start to update everyone on my experience. There is just so much that has happened in the last 12 months.

It was a year ago this month, last May 10th, that I had a 6 hour cancer surgery on my throat and neck for Squamous Cell Carcinoma. Fifty percent of my tongue was removed and part of my bottom left gum as well. Also had 18 lymph nodes removed. Doctor said he got it all out and no further treatment needed. However, I would probably never be able to eat by mouth again. I stayed 6 days in ICU and 4 days in a private room. The first 4 days in ICU I hallucinated due to the drugs I was being given. My throat was being suctioned through my trach every hour or so by the respiratory therapist. Horrible experience. Felt like I was choking every time. My doctor informed me that the worst pain I would have would be my leg where the graft was taken to repair my arm. He was right. It has been a year and it is just now scab free but tender to the touch. At least it has stopped bleeding.

My leg in ICU

12 months later

    

                         My tatoo is now on my tongue and gum on the left side of my mouth.

When my brother and his wife came to visit me for the first time I was in ICU. The first thing I said to him was "I wish I was dead." The look on his face was one of horror. I had no idea what I looked like so I decided to take a selfie.

First day in ICU

Last day in ICU

My neck is hard and stiff to the touch due to having had radiation 6 years ago. This area where 18 lymph nodes were removed will remain hard and will take longer for the healing to take place. I have limited movement in my neck area and the long scar still hurts.

Where they removed 18 lymph nodes

As for my tongue, after a few months it started to get numb at the tip and slowly is progressing to the back of my throat. I have trouble swallowing my very thick saliva that keeps forming and use my suction maching often. Because of alll the saliva I have to use tissues all day long. When I speak I drool so I keep a paper napkin to dab my mouth almost all of the time.

My voice box was damaged during surgery so I have a hard time speaking. It wears me out as I have to strain to talk. I will never hear my real voice again. I sound like a machine. My 2 little dogs do not respond to my voice and at first didn't respond to me at all. It's like they didn't know who I was. So I don't talk at all when I'm alone at home and they are getting used to that.

Due to my lack of tongue I can't pronounce a lot of words which causes me problems when I have to talk on the phone. I can't make the "C" or "K" sound as my tongue can't touch the top of my throat. In the beginning of my recovery I used an eraser board to communicate. When I returned home I still had the trach in my throat. My sister-in-law had to suction me through it as I could not bring myself to do so. She stayed with me at my home for about a week or so. I eventually had the trach removed and began to use a suction machine to clear my throat from the thick mucous. I was suctioning every few minutes for months. It slowly got better and now only suction a few times a day. I still carry the machine with me when I go to the doctor or grocery store just in case.

The first night I was home from the hospital I got out of bed to go to the bathroom on my usual frequent visits to the toilet. As I walked down the hall I became aware that I had a very bad dream. It had to be a dream as it was too horrible to be real. I remember having such feelings of relief that it was just a dream. Then a few seconds later I realized it was real. How can this be? What a horrible experience. It wasn't a dream. My heart broke into pieces. I needed medication in order to cope so started taking Xanax on a regular basis. It has kept me sane. I also have to have the TV on around the clock to distract me when I am in and out of sleep during the night and day so my thoughts will be drowned out.

I only started driving a few months ago. My brother did my shopping for supplies which was mostly things needed for the dogs and the house and to pick up my meds. My formula for my feeding tube is delivered to my house. I was very weak for a long time.

Tried to go to my mailbox one evening and tripped and fell in my driveway hitting my head pretty hard. Made it into my house and called my brother to take me to the ER. Had a really bad panic attack and was sedated. Had scans and my brain was not bleeding but I was bleeding on my arms and legs. Had a large lump on my forhead and a big black eye the next day. Took a selfie.

A couple of months later, on my way to an appointment at the Heart Clinic I got into an auto accident. I was at an intersection stop sign and did not see any vehicles coming so continued on. A car hit the rear on my driver's side which sent me into a spin a couple of times around and I landed on a truck. All my airbags deployed and one hit me on the side of my head really hard to where I thought my stitches on my neck had opened. When the ambulance got there they said it was alright. Made it to my doctor's appointment as my brother transported me. Was given an EKG and doctor said it was OK. I was still having chest pains. Might have been from the seat belt that tightened on my chest.

My car was totaled. I still had my old van to drive till I could get insurance money for another car. The insurance company was generous with the money they gave me and now I am very happy with a really pretty blue Mazda 5.

For a few weeks after the accident I had flashbacks of the loud bang and the spinning around in my car. I'm still afraid to enter an intersection on the highway. Post Traumatic Stress is a real thing.

I will never be able to eat by mouth again and use my feeding tube for all my nutrition. It gives me a lot of trouble and tends to bleed from the stoma. I clean it several times a day and apply antibiotic cream around the hole where there are litle blood blisters then apply a split pad. Gastro Doctor says it is to be expected. He wasn't very concerned. I don't think it's normal and will talk to my Oncologist about it.

I have regular appointments with my Oncologist in New Orleans and my brother drives me there. I'm so grateful to my brother and his wife Simone and their daughter for all they have done for me since my surgery. There was very little I could do for myself when I first got home from the hospital. They were there for me.

A recent photo

I left out a lot of other things that I don't feel it necessary to share at this time. Just wanted to let everyone know what it was like these last 12 months. My Oncologist said that it would take a year to see any real improvement. He was right.

P.S. My last PET Scan showed no cancer.

Bye for now.

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.