Just diagnosed with SCC
I noticed that I had a swollen lymph node in the upper right portion of my neck on May 29, 2012 while deployed to Afghanistan. They conducted a CT scan with contrast on the June 7 and the reading came back as "suspicious for cancer".
I met with my doctors today and they have already scheduled me for surgery. They are planning to conduct the following procedures; Laryngoscopy and nasal endoscopy with tonsillectomy, pharyngectomy and a partial glossectomy.
I am very nervious about the above procedures due to how quickly this is happening. Is this normal in sense of how quickly surgery is taken place without a PET scan?
Is it normal to not remove the mass from my neck that was identified as being malignant?
Any input will be greatly appreciated.
Comments
-
first of all
Do you trust your doctors? Are you getting this care at a VA hospital or where?
I agree: it seems very fast. The first two procedures, laryngoscopy and nasal endoscopy, are not surgeries until you add the tonsillectomy. They are just visualizing mechanisms so they may go in and take a look and, possibly, a biopsy.
I think you need to talk to your doctors and get a better idea of what is going on here. It may be they will use the laryngoscopy and endoscopsy to get in there and take a look, do a biopsy and make their decision while in the OR on what they need to do for you right then. Maybe they will back out and get the biopsy results before making a decision but I don't think the biopsy results will be immediately available.
Removal of the mass in your neck: did they speak with you about radiation and/or chemo?
I think you have a lot more questions than you do answers at this point. Go back and talk to your doctor - make a phone call and talk to the nurse. Get someone to tell you more of what is going on. That's a lot of procedures when you aren't sure of the plan.
Let us hear from you.0 -
scc
Hi Nous Defions,
Sorry to see you here, but don’t over worry.
From the time I felt a lump on the left side of my neck (11-11-11) a visit to a GP, then a visit to the ENT and subsequent diagnosis of SCC, until lateral dissection of the jugular too remove an enlarged lymph node and cancerous spot on lower tongue was around 34 days. The decision to remove the lymph node and portion of tongue was based on how bad it looked on the day of surgery. My ENT probably knew what he was going to do, but he laid out the option that if it was better served by radiation and chemo therapy first he would close things up and ship me to oncology. As it turned out my ENT is one sharp cookie with an even sharper scalpel and he opted to remove all visible signs of cancer. My ENT said some people opt for surgery only, with sometimes good (down the road) results. I chose to include radiation and chemo to try to eradicate the beast.
What ever you decide, it all happens fast (until you are finished). Now at 14 weeks post treatment life is slowly returning to “new” normal. We joke around a lot here on this site, but take each question as serious as a heart attack.
Peace for you,
Matt0 -
Welcome Nous....
I'm sorry you had to find us, but oh so glad you did. There are many very knowledgeable people here.
I do understand why your Drs. want to do all the scoping, but all the "ectomies"...seems pretty drastic for an unknown primary...not all of us get the lymph nodes removed (I didn't, but won't know for sure that they won't come out until my follow up PET scan. I've never heard of anyone having surgery before having a PET scan!
I take it you're in the service, so are these military Drs.? Is there a way for you to go to a regular cancer center for a second opinion??
p0 -
Welcome....
First and foremost.....which branch if in the service..LOL. Prior Marine Corps here, several years ago.
OK, I do have a question...you say just diagnosed with SCC. But no mention of how that was determined..I see nothing concerning a biopsy or tissue sample.
I did have a CT on a Friday, tonsil cancer suspected (like 90% chance), also a swollen lympmnode like you.
That Monday the tonsils were removed, and a quick biopsy at that time did confirm STGIII SCC Tonsil Cancer.
Soooo, at this point, though the odds might be highly possible, at least they haven't confirmed cancer...hoping that doesn't come after surgery.
I did have an initial PET a week or so after, prior to starting Tx. They need to do other things prior to starting your Tx depending on what they plan.
If chemo will be used, usually a power port is installe in your chest. This speeds the ease and delivery of meds, chemo, hydration, etc...during treatment..and saves your veins.
If they will also or plan on radiation, you'll eventually be fitted for the mask... It sucks, but a lot of us have endured it.
Here is a link to the SuperThread, tons of good info for newbies and old timers a like...contributed by the many here.
SuperThread
As for removing the tumor, some times they will do a neck dissection where they remove several lymhpnodes, sometimes not.
In my case, they opted not, seeing first what effects the Tx had.
For me that was nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU. Then an additional seven weeks of concurrent weekly Carboplatin, and 35 daily sessions of radiation.
Oh, and that tumor...it dissolved away between the first nine weeks of treatment before I started the next seven weeks.
The radiation is the part where the mask comes in... You wear a mask on your face, covering your shoulders while bolted to a table.
Anyways, that was over three years ago, so far so good....
Again, hope you don't have to go through this, but if you do...several here have been through it already, you can do it also.
Best,
John0 -
You Have....phrannie51 said:Welcome Nous....
I'm sorry you had to find us, but oh so glad you did. There are many very knowledgeable people here.
I do understand why your Drs. want to do all the scoping, but all the "ectomies"...seems pretty drastic for an unknown primary...not all of us get the lymph nodes removed (I didn't, but won't know for sure that they won't come out until my follow up PET scan. I've never heard of anyone having surgery before having a PET scan!
I take it you're in the service, so are these military Drs.? Is there a way for you to go to a regular cancer center for a second opinion??
p
" I've never heard of anyone having surgery before having a PET scan!"
and now you have, me ~ LOL....
JG0 -
We Dare, We Challenge, We defy.(Nous Defions)
Welcome to the board, sorry you find yourself here but you will be sure
glad you did. I can't answer your question but personally to me it all seems
a little rushed, my head would be spinning. But your in luck because this
board is filled with knowledgeable people who will answer your questions
and concerns.
Once again Welcome.
God bless
Tonsil dad,
Dan.0 -
get the biopsy done
Hello Nous,
welcome and thank you for your service to our country !
I would definitely ask some more questions. Will they do a biopsy during the endoscopy ?
will they be prepared to do additional surgery if necessary after getting the path reports back from biopsy (during surgery) as others have asked.
If you aren't getting your questions answered, get a second opinion. Preferably from an ENT knowledgeable in head and neck cancers.
wishing you the best possible outcome.0 -
LOL....yup John, and nowSkiffin16 said:You Have....
" I've never heard of anyone having surgery before having a PET scan!"
and now you have, me ~ LOL....
JG
I have you, learn something new everyday
. I'm thinking all these "etomies" are possibly biopsies...since he has an unknown primary??
p0 -
- They performed a Needle Aspiration Biopsy on Monday and results came positive for Squamous Cell Carcinoma "unknown primary" on Wednesday.
- I was referred to the UNC Cancer Hospitial for the duration of my treatment.
- They did discuss starting chemo and radiation several weeks after surgery.
- Today was my very first appointment with my new doctors at UNC and the overall second appt since being told i have cancer. So, as you can see, I am still trying to digest the whole diagnosis / initial treatment.
I hope that I provided enough information about my situation. Like I said, I am still trying to fully process my situation.0 -
FNA...Nous Defions said:- They performed a Needle Aspiration Biopsy on Monday and results came positive for Squamous Cell Carcinoma "unknown primary" on Wednesday.
- I was referred to the UNC Cancer Hospitial for the duration of my treatment.
- They did discuss starting chemo and radiation several weeks after surgery.
- Today was my very first appointment with my new doctors at UNC and the overall second appt since being told i have cancer. So, as you can see, I am still trying to digest the whole diagnosis / initial treatment.
I hope that I provided enough information about my situation. Like I said, I am still trying to fully process my situation.
OK, that makes a more sense....
Also, sounds like they are on the ball....
Keep us in the loop and we'll give you the best information we can based from our experience.
Best,
John0 -
Thank you. I am trying toSkiffin16 said:FNA...
OK, that makes a more sense....
Also, sounds like they are on the ball....
Keep us in the loop and we'll give you the best information we can based from our experience.
Best,
John
Thank you. I am trying to stay very positive right now, but I am still going through multiple emotions at any given time. I woke up last night and could hardly breathe due to anxiety. It's trying to plan for all of the unknowns that is driving me crazy.0 -
Been There...Nous Defions said:Thank you. I am trying to
Thank you. I am trying to stay very positive right now, but I am still going through multiple emotions at any given time. I woke up last night and could hardly breathe due to anxiety. It's trying to plan for all of the unknowns that is driving me crazy.
I feel for you brother.... most here have been there done that.
Even after the fact, anxiety always has a way of creeping in.
We actually have a word we use for the anxiety we have during scan time...scanxiety, LOL.
I guess you get through it, then learn to live with it.
JG0 -
WelcomeSkiffin16 said:Been There...
I feel for you brother.... most here have been there done that.
Even after the fact, anxiety always has a way of creeping in.
We actually have a word we use for the anxiety we have during scan time...scanxiety, LOL.
I guess you get through it, then learn to live with it.
JG
Two years ago this past April I was diagnosed with SCC unknown primary after I discovered a swollen lymph node in my left neck.
I had a left neck dissection with over 30 lymph nodes removed and the tonsils were removed for good measure.
Following surgery, the only cancer found was in that one lymph node and the decision was made to not do radiation or chemo until a time where a primary could be found.
Two years have passed and after numerous exams, a couple of scares, and plenty of anxiety, I am still cancer free and thanking God.
At first I looked at the unknown primary as something that was lurking and would eventually be revealed. Come to find out some primaries are unknown because they ceased to exist.
I did have a PET prior to surgery and the bad lymph node and all his clean friends on the left side were removed.
I know how anxiety filled these early stages are and I wish you the best and will keep you in my prayers.
Thank you for your service!
Joel0 -
I was told when I got to this forum....Nous Defions said:Thank you. I am trying to
Thank you. I am trying to stay very positive right now, but I am still going through multiple emotions at any given time. I woke up last night and could hardly breathe due to anxiety. It's trying to plan for all of the unknowns that is driving me crazy.
that the waiting and wondering period was the worst part of this diagnosis...they were so right. I was just like you, scared, anxious...trying to put my name and the word "cancer" in a sentence. They just didn't go together.
I just kept coming back here, everyday...and would get my fears quelled some. Knowing you are going thru this with many others really helped me...I wasn't alone. Keep coming back, voice your fears...voice your "what-ifs"...spill them out. We talk about everything here...
p0 -
All of the emotions that
All of the emotions that come with diagnosis are natural. Try not to spend too much energy on the unknown(easier said than done). A mindset of "take it as it comes and deal with it" will be more productive. I pray that your journey is an easy one.0 -
Hi Noushwt said:All of the emotions that
All of the emotions that come with diagnosis are natural. Try not to spend too much energy on the unknown(easier said than done). A mindset of "take it as it comes and deal with it" will be more productive. I pray that your journey is an easy one.
....
Just to share my timeline, diagnosis and treatment ..
October 21 2011 CT from eyes to chest revelaed mass at base of tongue (I had a swollen lymph node and after two rounds of anitbiotics still had it and felt tired, weak, thus the order for the CT scan). they suspected cancer in base of tongue and 1 lymph node at that time.
Went to ENT within one week and he did a scope exam down throat, saw base of tongue tumor and said 99% chance it was cancer and probably SCC. Scheduled biopsy for Nov 11 and biopsy revealed SCC HPV+ cancer.
Nov 16 had PET / CT done for stageing and to see if cancer was anywhere else in my body. No cancer found anywhere but BOT (base of tongue) and lymph node. Was determined to be at stage III
Treatments (TX) started November 21 ..plan of attached was radiation for 6 weeks and Erbitux (I did not have surgery or any plantinum chemo drugs - just the Erbitux).
Finished tx on January 20th 2012. I had some delays due to radiation burns to neck were pretty bad (see my pictures on this profile if you would like) and I also had quite the reaction to Erbitux (one of the worst the oncologist had seen he said). I had white pimples and swelling on every centimeter of my face, neck and head and even down my back). I did not recieve my last dose of Erbitux for that reason. However, they say if you have a reaction to the Erbitux, that is good and shows the Erbitux is doing it's job on the cancer.
First post tx PET / CT scan on May 7th showed no signs of cancer in lypmh node or BOT...the tumor in BOT was gone and lymph node had shrunk to almost nothing. PET/CT did show a slight uptick in heat on the vocal cords, oncologist and ENT said most likely affects of tx / radiation.
Since May 7th I have had monthly exams (scope and finger exams) and all have come back good.
Sorry you have to join our group ...but you can't find a better buch of folks who care and can give you great feedback.
My personal laptop was damaged so until I get it fixed (hope they can) I have to login from work and can't do my pm checking like I used to....
Whispered a prayer for you my friend and will add you to my nightly prayers (if you don't mind) now that you are part of our group!
Best,
Tim0 -
Welcome
Sorry that you had to join the club but, this is a great support group. My first cancer was fast and furious. I had a lump removed on my lip, doctor said not to worry, no signs of cancer. Next week, pathology report said squamous cell carcinoma. That afternoon I had an MRI the next day I had a PET and 2 days later I was at Stanford. Surgery the next Monday. I didn't have time to think let alone get upset. It will be 2 years in August. We will share our journey and answer any questions that you might have. I agree with John--check the Superthread, so much information, I still check it from time to time, radiation is a gift that keeps on giving.
Thank you for your service to our country.0 -
Thank you
I truly appreciate everyone's support. I will post before I go into surgery because I'm sure that I will be very anxious and it will help me cope. I will post surgery results as soon as I am able to do so.
Thank you,
Will0 -
Branch of serviceSkiffin16 said:Welcome....
First and foremost.....which branch if in the service..LOL. Prior Marine Corps here, several years ago.
OK, I do have a question...you say just diagnosed with SCC. But no mention of how that was determined..I see nothing concerning a biopsy or tissue sample.
I did have a CT on a Friday, tonsil cancer suspected (like 90% chance), also a swollen lympmnode like you.
That Monday the tonsils were removed, and a quick biopsy at that time did confirm STGIII SCC Tonsil Cancer.
Soooo, at this point, though the odds might be highly possible, at least they haven't confirmed cancer...hoping that doesn't come after surgery.
I did have an initial PET a week or so after, prior to starting Tx. They need to do other things prior to starting your Tx depending on what they plan.
If chemo will be used, usually a power port is installe in your chest. This speeds the ease and delivery of meds, chemo, hydration, etc...during treatment..and saves your veins.
If they will also or plan on radiation, you'll eventually be fitted for the mask... It sucks, but a lot of us have endured it.
Here is a link to the SuperThread, tons of good info for newbies and old timers a like...contributed by the many here.
SuperThread
As for removing the tumor, some times they will do a neck dissection where they remove several lymhpnodes, sometimes not.
In my case, they opted not, seeing first what effects the Tx had.
For me that was nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU. Then an additional seven weeks of concurrent weekly Carboplatin, and 35 daily sessions of radiation.
Oh, and that tumor...it dissolved away between the first nine weeks of treatment before I started the next seven weeks.
The radiation is the part where the mask comes in... You wear a mask on your face, covering your shoulders while bolted to a table.
Anyways, that was over three years ago, so far so good....
Again, hope you don't have to go through this, but if you do...several here have been through it already, you can do it also.
Best,
John
John - i have been in the Army for the past 23 years with 20 of those years in Special Forces.0
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