FOUND A LUMP ON MY NECK

Linda C.

Kapital said:

treatment

We also had, what I considered, a very long time between noticing a lump on my husbands neck and start of treatment. He first noticed a lump on his neck in Sept of 2014, but didn't start treatment until mid Jan of 2015. It drove me crazy that it took that long to get a diagnosis - stage IV tonsil CA. We were told, after multiple negative biopsies, that he had a branchial cleft cyst and not to worry about it  Anyway, I'm here to tell you that he finished treatment 2 years ago and  he has been cancer free since. Waiting to get started seemed like an eternity once he was diagnosed, but ultimately, it has all worked out so far. Good luck

Than you for the best wishes.

Than you for the best wishes.  I'm so ready to get started with treatment even knowing the terrible side effects I will probably experience.  Great news about him being cancer free for 2 years.

 

Linda C.

PATHOLOGY REPORTS

Went to the ENT office today to pick up copies of my Core Needle Biopsy report.  I was given the two reports as well as a full package of all notes by ENT doctor and other reports in my file.  Included was a CD of my first CT Scan ordered by Dr. Haydel.  Made an appointment to see ENT in two weeks as requested.

Came home and read the reports.  It is Squamous Cell Carcinoma as well as some positive Mesothelial cells.  I am also positive for HPV.  That's about all I can understand on the confusing medical reports.  I'm sure the Oncologist will explain in detail what I have.

Received a call from the Oncologist's office and was scheduled to see Dr. McGaw at Mary Bird Perkins Cancer Center on May 10th at 10:30am... finally.

Also received my first bill.  It was from Thibodaux Regional Medical Center and it was for $3,050.00 for the Core Needle Biopsy.  If it is determined that these services are not payable by my insurance I will be responsible.

 

CivilMatt

what next?

Linda,

Did we mention, you sometimes have to pay through the nose? 

This ride is so much more than cancer only.

I hope the finance Gods smile on you.

Good luck,

Matt

Linda C.

CivilMatt said:

what next?

Linda,

Did we mention, you sometimes have to pay through the nose? 

This ride is so much more than cancer only.

I hope the finance Gods smile on you.

Good luck,

Matt

You are so right.  It is more

You are so right.  It is more than just cancer.  Thanks for the best wishes.

Engelsa

Protocol for Stage II

The medical oncologist is correct that radiation alone is the standard protocol for Stage II Tumors. The medical community has found this treatment to be most effective for your precise condition.

I am encouraged to hear that your tumor was found early before significant progressio. I believe your tenacity has paid you a dividend.

I wish you the very best in your treatment and recovery.

Sara

 

 

Linda C.

Engelsa said:

Protocol for Stage II

The medical oncologist is correct that radiation alone is the standard protocol for Stage II Tumors. The medical community has found this treatment to be most effective for your precise condition.

I am encouraged to hear that your tumor was found early before significant progressio. I believe your tenacity has paid you a dividend.

I wish you the very best in your treatment and recovery.

Sara

 

 

Thank you Sara.  I was

Thank you Sara.  I was concerned because some medical sites state that Stage II would have no mets.  I do have mets in left lymph node.  I see the Radiation Oncologist tomorrow and will ask questions then.

Linda C.

I took the opportunity to

I took the opportunity to discuss my concerns with my ENT doctor today.  Showed him the info I printed from the National Cancer Institute's website.  Once he read the info he left the room and placed a call to the Radiation Oncologist.  When he returned he said to me that I was correct.  I am in Stage III.

Stage II - Tumor is between 2 and 4 centimeters (from ¾ to 1½ inches).  Tumor has not spread to lymph nodes or other parts of the body

Stage III squamous cell carcinoma: The cancer has spread into facial bones or 1 nearby lymph node, but not to other organs.

For most (but not all) cancers of the head and neck, having cancer spread to the lymph nodes automatically puts your cancer into at least stage III. 

We talked for a good while and then I made another appointment with him as well as paid my co-payment.

I left his office and went directly to my next appointment with the Radiation Oncologist Dr. Long.  He showed me the NCCN Guidelines for Cancer of the Oropharynx and treatment protocol.  I guess he knows I'm the kind of person who needs proof.  Didn't want to piss him off so I didn't rub it in that I had to correct the Stage II to Stage III diagnosis.  My "Team" let me down already and we haven't even started yet.

He then looked down my throat with the light.  He sure could use some tips from my ENT doctor.  I've had that procedure done twice and never felt the tube in my throat.  This time I did and I started to gag and cough.  Very unpleasant.  He said later that he would use more throat deadening spray next time.

Then he showed me a sample radiation mask.  I held it and placed it over my face.  I asked if the eyes would be cut out.  No answer.  I asked if my eyes would be open and he said yes.  However, there is no way that I will be able to open my eyes unless the mask is cut around the eyes.

He then gave a very long, and informative explanation of what to expect during and after radiation treatment.  I was very familiar with all he said as I have been reading online for months now.  

So the next thing is to receive calls with instructions as to who will see me next.  I will be seeing a dentist for Fluoride treatment.  I will see the Gastro doctor to have the PEG feeding tube put in.  Then I will be fitted for the mask.  Treatment will begin right after.  I will have 35 Radiation treatments in 7 weeks time.

The ball is rolling now.

phrannie51

Your perseverence has saved your bacon!!

Kudos to you!!  I'd have the Dr. resubmit the biopsy to your insurance....how the hell else do you find out if you have cancer, unless they gave you a PET scan first which is far more expensive, and denied by insurance companies all the time?  The outcome of the biopsy should be enough to get them to pay.

Good luck....I've had chemo and radiation.....then I had only radiation.  I thought the rads are what did me in the first time around, but I found out the second time, that chemo was the cuprit...or maybe the combo....but rads alone were easier that's for sure.

p

Linda C.

phrannie51 said:

Your perseverence has saved your bacon!!

Kudos to you!!  I'd have the Dr. resubmit the biopsy to your insurance....how the hell else do you find out if you have cancer, unless they gave you a PET scan first which is far more expensive, and denied by insurance companies all the time?  The outcome of the biopsy should be enough to get them to pay.

Good luck....I've had chemo and radiation.....then I had only radiation.  I thought the rads are what did me in the first time around, but I found out the second time, that chemo was the cuprit...or maybe the combo....but rads alone were easier that's for sure.

p

I'm hoping the 35 Rads are

I'm hoping the 35 Rads are not going to be too bad.

 

Linda C.

IS RADIATION ALONE ENOUGH?

Met with Oncologist Dr. McGaw today for the results of the PET scan.  He said that I would only need to be treated with Radiation and no Chemotherapy.  I asked what stage I was in and he looked through his notes and said Stage 2.  I questioned why only Radiation and he replied that he was surprised at that determination as well.  He explained that they had to follow the particular protocol as per my PET scan results.  He said there would be no further follow up with his office.  I did not have a sense of relief as I expected I would have given these results.  I am worried that Radiation will not be enough.

Linda C.

Had a bad reaction to the

Had a bad reaction to the Bentle medication given to me by the Gastro doctor for Irritable Bowel Syndrome.  Severe constipation, bloating, and stomach pain started yesterday and has eased up some today.  Last night the pain was really awful.  I put a heating pad on my abdomen and tried to sleep but didn't get much.  

At first I didn't know if it was the Bentle or the antibiotic Clindamycin given me by the dentist that was causing this pain as they both have the same side effects.  So today I didn't take either one.  My abdomen is sore like I have been punched in the gut.  Still bloated and constipated.  Last night I took 2 stool softeners and had a little relief today with a few small bowel movements but still not normal.

On top of all this I'm experiencing some emotional distress.  After reading more information online I came across some medical journals that gave percentage of survival rates for my type of cancer and it is less than I originally thought.  One site stated 60 to 80% 5 year survival rate.  I thought it was 80 to 90%.  I'm not a gambler so to me it is just a death sentence either way. 

So I've been down all day and my spirits have plummeted to an all time low.  I have no energy to care for myself or get dressed and go out to walk the dogs.  All I want to do is sleep.  Scary thoughts have crossed my mind.  Do I really want to go through this treatment hell and die a couple of years later anyway?  Why go through all that pain?  

The side effects of Radiation Therapy are horrible.  Living alone I will have no one to help me in the middle of the night when I'm sick and throwing up.  Who will help me prepare nourishment for me or assist with tube feeding.  I just don't think I can do this alone.  I may not have the strength. 

I'm so scared.

caregiver wife

Thinking of you often

Dear Linda,

I do think of you often.  Good for you for being informed.  Just wanted to send you a virtual hug.

Crystal

Linda C.

caregiver wife said:

Thinking of you often

Dear Linda,

I do think of you often.  Good for you for being informed.  Just wanted to send you a virtual hug.

Crystal

Hi Crystal, Thanks for the

Hi Crystal, Thanks for the hug.  I'm sitting here waiting for the phone to ring with where I am to go next.  I will be getting a PEG soon and then the mask fitting.  Dreading both.  However, I feel the need to get treatment started as soon as possible.  The growth on my tongue feels like it is growing.  So kind of you to care.