Throat cancer HPV+
I got really sick around the first week of March 2012. I noticed a large lump show up out of no where on the left side of my neck. Went to the ER they said I had pharangytis, upper respitory infection, & sinus infection. Put me on a Zpack, didn't help, went to see my reg physician, she put me on Penicillin, about 1 1/2 weeks later still no change, I started feeling really bad (no energy) and went back to ER. They decided to do a MRI. They told me I had excess tissue I was born with that became inflammed because I was sick. Sent me to a head, neck, throat specialist. He confirmed what they told me in the ER. (BTW..It's now the end of March) HNT specialist scheduled me for surgery April 11. Everyone reassured me that everything would be completely fine. Had my surgery, big cut on the side of my neck (no big deal, sucks but it's ok), stayed overnight in the hospital. I went in on April 18 one week later to have stitches removed and was informed I have cancer. HPV+ I went to my appt alone because I just thought it was going to be a quick visit & I would be all better & good to go. I felt like time stopped & I was going to pass out. I had the doctor call my husband because I was not processing everything I was being told at that moment. Anyway the doctor thoroughly checked my mouth and my throat. He couldn't find anything. BTW...I don't have tonsils, they were removed when I was a child. He then gave me 2 options, either put me under again so he could go in & check more thoroughly or get a PET scan. I opted to do the PET scan first and that was also what he suggested I do first. I had my PET scan today April 24. They did mid thigh up to my skull. I'm expecting to get results this Thursday when I see the onocologist. I am very hopeful that it's not too bad and I'm also trying not to think about it.
About me: I am 33 years old, female, married 4 kids (6-11yrs), never been a smoker only tried it a few times when I was a teen, I only drink very very occasionally, no drugs, my only addiction is food, I weigh about 240. I run my own business (certified in home childcare)
Symptoms: over the last few months I havent felt quite right. Very tired... It's weird but my throat hasn't really been sore at all, I just have to clear my throat a lot or I start sounding very hoarse. Sometimes I sound hoarse no mater what I do. It comes and goes. Large lump on left side of my neck about the size of a golf ball that popped up very very quickly. Left jaw hurts some & I have pain that comes & goes in my left ear. I think that's it.
After reading on here what people go through with chemo & radiation it sounds a little scary! I have a feeling that I have a very bumpy road ahead of me. I'm very anxious to find out what stage I'm in. Any thoughts from the info I've provided? If I am in one of the later stages is it still very curable? Does this type of cancer spread quickly? Did or does anyone else feel really tired some days? Today I had a good day but some days I feel so tired. Is that normal?
Any advice or thoughts for my future is greatly appreciated! Thank you
Kristy
Comments
-
I'm sorry you had to find this little club....
but am delighted you did. You hit the jackpot finding these folks here (you found them exactly at the same time in your disease, as I did.........the beginning.....it couldn't be more perfect).
We all went thru what seems like months of trying to get to the root of the problem...and you'll see that most of us ended up with a "bump on the neck" that got us to the Dr. Even after diagnosis, for some of us....treatment seems a long time in coming...like "don't these Dr.'s understand?? I have CANCER for gawd's sakes"....but the treatment comes sooner than it feels like it does, and your road to recovery will suddenly all fall into place.
It takes a couple days to get the results from your PET, and then if a primary is found, your ENT will stage it. I have Nasopharyngeal Carcinoma Stage III. Most of this type of cancer isn't found in the very early stages, but it is highly curable (especially the HPV types). I started asking the docs the first of January "what is this lump on my neck"...and got the exact same answers (and antibiotics) as you did. I didn't get a full diagnosis until March 26, after my PET scan. I just started chemo and radiation today (April 24th)...My Oncologist did a MRI about 2 weeks ago, and nothing had changed from the PET, so it is a slow mover, it seems.
Kristy...take full advantage of this board...and the folks here. There is a world of knowledge, experience, hope and caring living right here in these little threads. Ask all your questions...they WILL be answered....and you will walk away everyday with a warm blanket of hope and knowledge.
This is the best group in the world!!
p0 -
It Is Scary
But not as horrible as it used to be.
Years ago, many of the people in our shoes died of starvation. Now, while we may lose lots of weight, I haven't heard of anyone starving to death. Treatment has come so far - we can fight side effects with weapons not available to those who came before us.
And, like many will say - if you gotta have head and neck cancer, here's hoping it's HPV positive.
MANY people here weren't diagnosed until there cancers would be considered stage four. Treatment can be rough, but you just keep trucking. I was stage four at diagnosis (non-HPV, so, statistically my chances weren't as good), and I'm here over two years after diagnosis, doing very well (considering). I sleep through the night, only getting up once or twice. I can eat most foods, and can taste almost 100% of the things I eat. Well, I think I can taste everything - some things I can taste the first bites, but the taste fades out. I do have some post treatment issues, but nothing that makes me miserable. I'm doing well enough so that some trivial things really irk me. Today, it was having to crawl under a counter at work to plug something in, because I didn't realize my arm could not make the motion I needed to just bend over and plug it in. Oh well.
As for eating - I've regained fifty of the seventy pounds I lost during treatment - so that tells you how well I can eat after treatment. Yes, some days it's hard (glad you don't have tonsils - my tonsillectomy was very painful for me). For most of us, it's not as bad as it is on those made for tv movies about cancer patients.
Do well.0 -
Hi Kristy and welcome to ourPam M said:It Is Scary
But not as horrible as it used to be.
Years ago, many of the people in our shoes died of starvation. Now, while we may lose lots of weight, I haven't heard of anyone starving to death. Treatment has come so far - we can fight side effects with weapons not available to those who came before us.
And, like many will say - if you gotta have head and neck cancer, here's hoping it's HPV positive.
MANY people here weren't diagnosed until there cancers would be considered stage four. Treatment can be rough, but you just keep trucking. I was stage four at diagnosis (non-HPV, so, statistically my chances weren't as good), and I'm here over two years after diagnosis, doing very well (considering). I sleep through the night, only getting up once or twice. I can eat most foods, and can taste almost 100% of the things I eat. Well, I think I can taste everything - some things I can taste the first bites, but the taste fades out. I do have some post treatment issues, but nothing that makes me miserable. I'm doing well enough so that some trivial things really irk me. Today, it was having to crawl under a counter at work to plug something in, because I didn't realize my arm could not make the motion I needed to just bend over and plug it in. Oh well.
As for eating - I've regained fifty of the seventy pounds I lost during treatment - so that tells you how well I can eat after treatment. Yes, some days it's hard (glad you don't have tonsils - my tonsillectomy was very painful for me). For most of us, it's not as bad as it is on those made for tv movies about cancer patients.
Do well.
Hi Kristy and welcome to our world. I'll take a stab at providing some very basic guesses at your staging. It gets fairly complicated quickly, so perhaps you may wish to do some research, The staging system is called, "TNM Staging system", and by your description my guess is you have Oropharyngeal Cancer derived from HPV. You have to apply the information currently known to the three parts of the system. Lets take one at a time:
T----indicates the size of the primary tumor
From what you describe, this is unknown. Furthermore your tonsils are not present which may indicate base of the tongue, but really we don't know, which gives us the first part of your staging, TX:primary tumor cannot be assessed, information not known. Lets move on, adding on from here.
TX=unknown primary
N------describes extent of spread to nearby lymph nodes
from your description, "The size of a golf ball, 1 lymph node"
My best guess here is the classification, N1-the cancer has spread to 1 lymph node on the same side as the primary but smaller than 3cm. N3 would fit your diagnosis if the circumference of a golf ball is around 6cm because it does not distinguish what side the lymph node is. So far it would look like this: TXN1 or TXN3, lets move on:
M------ defines distant spread
MX-cannot be assessed, MO-- no distant spread, M1--spread to distant sites outside the head and neck, This one is open to interpretation. My oncologist said everyone is MX at diagnosis. Most oncologist from what I see here go in the other direction of MO, if it is not apparent. So my best guess at this point is TXN1MO. Using these numbers they get into a process called stage grouping to determine your stage: Because of your unknowns at this time, the best fit is Stage IVA,
IVA--The tumor is any size and may or may not invade nearby structures. it has spread to one of the following. 1 lymph node on the same side between 3-6 cm across or one lymph node on the opposite side less than 6cm across. So my total guess at your staging would be:
TXN1MO Stage IVA
As others have stated, almost everyone here is stage 4 as well, because it's just so hard to diagnose until it has reached the lymph nodes. The HPV positive is a huge plus for you. FYI, the following are all symptoms of oropharyngeal cancer:
a sore throat that does not go away
a dull pain behind the breastbone
cough
trouble swallowing
unknown weight loss
ear pain
lump in the back of moth, throat or neck
change in voice0 -
KristyPam M said:It Is Scary
But not as horrible as it used to be.
Years ago, many of the people in our shoes died of starvation. Now, while we may lose lots of weight, I haven't heard of anyone starving to death. Treatment has come so far - we can fight side effects with weapons not available to those who came before us.
And, like many will say - if you gotta have head and neck cancer, here's hoping it's HPV positive.
MANY people here weren't diagnosed until there cancers would be considered stage four. Treatment can be rough, but you just keep trucking. I was stage four at diagnosis (non-HPV, so, statistically my chances weren't as good), and I'm here over two years after diagnosis, doing very well (considering). I sleep through the night, only getting up once or twice. I can eat most foods, and can taste almost 100% of the things I eat. Well, I think I can taste everything - some things I can taste the first bites, but the taste fades out. I do have some post treatment issues, but nothing that makes me miserable. I'm doing well enough so that some trivial things really irk me. Today, it was having to crawl under a counter at work to plug something in, because I didn't realize my arm could not make the motion I needed to just bend over and plug it in. Oh well.
As for eating - I've regained fifty of the seventy pounds I lost during treatment - so that tells you how well I can eat after treatment. Yes, some days it's hard (glad you don't have tonsils - my tonsillectomy was very painful for me). For most of us, it's not as bad as it is on those made for tv movies about cancer patients.
Do well.
Just wanted to add our prayers and thoughts for you with everyone else's. These boards are absolutely terrific and I'm addicted!
It may not be as bad as you're thinking but if it is, get under a terrific Dr. that you trust and get in the "fight" along with us (I'm still in the wings, waiting) but all the info you need is right here....it's unbelievable!! 0 -
LISTEN TO THE FOLKS
Im still waiting on the big picture, have a lot of little snap shots so fairly sure along with the information on this GREAT site, what the future holds. But this site has given me a feeling that the FUTURE is ours and we will reach it. So as others have said welcome aboard, sorry you have to be here, but Thank God, we all have these great Folks to Listen To.0 -
HPV+ SCC
If the node on your neck is positive for SCC, then you are Stage 3 or 4 (Stage 1 and 2 have no lymph involvement).
The NEJM has very strict publication standards, here is an excerpt from a 2010 study based on Stage 3 & 4 oral cancer patients:
"Published data indicate that tumor HPV status is a strong and consistent determinant of superior survival, regardless of treatment strategy...with 5-year survival rates among patients with HPV-positive tumors of approximately 75 to 80%"
http://www.nejm.org/doi/full/10.1056/NEJMoa0912217#t=articleDiscussion
Possible primary? From OCF:
"In the oral environment HPV16 manifests itself primarily in the back (posterior) regions such as the base of the tongue, the oropharynx (the back of the throat in the mouth), the tonsils and the tonsillar pillars."
http://www.oralcancerfoundation.org/hpv/
Do not get caught up in staging and what you read online about historical prognosis.
Yes, it's curable and you have a great chance of it.
There are many longterm survivors HPV+ or not.0 -
PS....Kristy....phrannie51 said:I'm sorry you had to find this little club....
but am delighted you did. You hit the jackpot finding these folks here (you found them exactly at the same time in your disease, as I did.........the beginning.....it couldn't be more perfect).
We all went thru what seems like months of trying to get to the root of the problem...and you'll see that most of us ended up with a "bump on the neck" that got us to the Dr. Even after diagnosis, for some of us....treatment seems a long time in coming...like "don't these Dr.'s understand?? I have CANCER for gawd's sakes"....but the treatment comes sooner than it feels like it does, and your road to recovery will suddenly all fall into place.
It takes a couple days to get the results from your PET, and then if a primary is found, your ENT will stage it. I have Nasopharyngeal Carcinoma Stage III. Most of this type of cancer isn't found in the very early stages, but it is highly curable (especially the HPV types). I started asking the docs the first of January "what is this lump on my neck"...and got the exact same answers (and antibiotics) as you did. I didn't get a full diagnosis until March 26, after my PET scan. I just started chemo and radiation today (April 24th)...My Oncologist did a MRI about 2 weeks ago, and nothing had changed from the PET, so it is a slow mover, it seems.
Kristy...take full advantage of this board...and the folks here. There is a world of knowledge, experience, hope and caring living right here in these little threads. Ask all your questions...they WILL be answered....and you will walk away everyday with a warm blanket of hope and knowledge.
This is the best group in the world!!
p
In the last 3 weeks or so, we have had a number of people, myself included, boarding a new Bus of Recovery....Ditto, Mrs. Sarge, Leo....(and any I forgot off the top of my head)...make room for Kristie...she's going to be riding our bus...
p0 -
Need to add this, also.....RogerRN43 said:HPV+ SCC
If the node on your neck is positive for SCC, then you are Stage 3 or 4 (Stage 1 and 2 have no lymph involvement).
The NEJM has very strict publication standards, here is an excerpt from a 2010 study based on Stage 3 & 4 oral cancer patients:
"Published data indicate that tumor HPV status is a strong and consistent determinant of superior survival, regardless of treatment strategy...with 5-year survival rates among patients with HPV-positive tumors of approximately 75 to 80%"
http://www.nejm.org/doi/full/10.1056/NEJMoa0912217#t=articleDiscussion
Possible primary? From OCF:
"In the oral environment HPV16 manifests itself primarily in the back (posterior) regions such as the base of the tongue, the oropharynx (the back of the throat in the mouth), the tonsils and the tonsillar pillars."
http://www.oralcancerfoundation.org/hpv/
Do not get caught up in staging and what you read online about historical prognosis.
Yes, it's curable and you have a great chance of it.
There are many longterm survivors HPV+ or not.
as it was the first piece of advice I followed here....DO NOT google your disease...much of what you read is outdated...like to scare the pants off you (and me)...Stay here, there are people here who have medical backgrounds, who keep up on the latest greatest, and post it when they find something of interest or full of good news.
p0 -
NO LONGER A ROOKIEphrannie51 said:Need to add this, also.....
as it was the first piece of advice I followed here....DO NOT google your disease...much of what you read is outdated...like to scare the pants off you (and me)...Stay here, there are people here who have medical backgrounds, who keep up on the latest greatest, and post it when they find something of interest or full of good news.
p
Just have to tell you P51, you can drive the bus, Im so impressed how far you have come from the Can some one Help me Please to a Source of Knowledge, Inspiration and just uplifting to both the Veterans and the Rookies on this site. So "P51 TAKE THE WHEEL" why is that making me think of a song Ive heard before, ummm.0 -
Kristyditto1 said:NO LONGER A ROOKIE
Just have to tell you P51, you can drive the bus, Im so impressed how far you have come from the Can some one Help me Please to a Source of Knowledge, Inspiration and just uplifting to both the Veterans and the Rookies on this site. So "P51 TAKE THE WHEEL" why is that making me think of a song Ive heard before, ummm.
welcome aboard young lady. Not being a smoker is in your favor and HPV gives you better survival rate.
I was given the runaround also...stage 4 tongue with 3 nodes.
Heavy smoker for 40 years with HPV...
I am 16 months out and doing great. They told me they would send me to hell and bring me back and they did! It won't be a day at the beach but take it a day at a time and yes, do not google. Stay on here and let the ones who have been there help you.
Just know you have a year out of your life to concentrate on getting well.
Sending good vibes your way
Nancy aka toughcookie0 -
Thanks to EVERYONE!! I also have an update...nwasen said:Kristy
welcome aboard young lady. Not being a smoker is in your favor and HPV gives you better survival rate.
I was given the runaround also...stage 4 tongue with 3 nodes.
Heavy smoker for 40 years with HPV...
I am 16 months out and doing great. They told me they would send me to hell and bring me back and they did! It won't be a day at the beach but take it a day at a time and yes, do not google. Stay on here and let the ones who have been there help you.
Just know you have a year out of your life to concentrate on getting well.
Sending good vibes your way
Nancy aka toughcookie
Thanks to everyone for your support & advice. I will definitely stick to this page! The discussion board has been soooooo helpful!! I had no clue what I was going to have to go through until I found this board. Now everything won't be such a slap in the face.
Anyway my doctor called today with my PET scan results. There is activity in my neck around where I had surgery and a little on my tongue. The doctor wants to schedule me for an outpatient biopsy on my tongue. I meet with my onocolgist for the first time tomorrow. Kristy 0 -
Welcome Kristy
I was Dx back in January 2009, SCC STGIII Right Tonsil, an a right side lympnode. First thing for me, tonsils came out and biopsied (that is actually when I was staged and confirmed SCC STGIII), a few weeks later came back as HPV+.
Next I had the port put in, but no PEG, it was not prescribed for me.
My ENT is the main MD on my team, he also Dx me, and took the tonsils out. He setup my team, chemo MD and rads MD.
Next, nine weeks of chemo in three week cycles (Cisplatin, Taxotere and 5FU). Then concurrent seven weeks of Carboplatin every Monday, and 35 daily Amifostine injections and radiation.
I finished up mid June 2009, and have been clean and clear since... Since then I have regained all taste, nearly all saliva, all blood work is normal and not on any meds.
Also, while I think of it, here's a link to the SuperThread, a compilation of great info and links contributed by many on this forum;
SUPERTHREAD
This cancer does not tend to spread, but there is never guarantee and a few on here have had both mets and recurrence.... But that is not the norm..., many, many on here have had no spread and have been very successful.
Anyways, welcome aboard and hang on for the ride....
Best,
John0 -
Hi Kristy -dkcoffey said:Thanks to EVERYONE!! I also have an update...
Thanks to everyone for your support & advice. I will definitely stick to this page! The discussion board has been soooooo helpful!! I had no clue what I was going to have to go through until I found this board. Now everything won't be such a slap in the face.
Anyway my doctor called today with my PET scan results. There is activity in my neck around where I had surgery and a little on my tongue. The doctor wants to schedule me for an outpatient biopsy on my tongue. I meet with my onocolgist for the first time tomorrow. Kristy
Kristy ...
I am a 48 year old father of five children (and a perfect wife I might add) ...I was diagnosed on Nov 2011 with base of tongue cancer with one lymph node involved (stage III). Mine was HPV related. I was not a smoker or heavy drinker.
I was fortunate to be able to travel to the MSTI Clinic in Boise Idaho (I live 109 miles north of Boise in McCall, Idaho). The MSTI Clinis is part of St. Lukes Hosptial System in Boise.
I just finished my treatment regiment Januray 20th. I go for my PET scan May 7th to determine my outcome. I just started feeling better a couple of weeks ago and I can eat now much better than just two weeks ago (it took that long for me to be able to eat - but remember everybody is different). I am now on little to no pain meds where I was taking 6 Narco a day and was wearing a 12 and a 25 mcg fentynal patch at the same time for 3 days (as well as taking 4 advil via tube every 6 hours).
I never had surgery, I only had radiation and Erbitux treatments (I was told Erbitux is a form of chemo, I had weekly Erbitux treatments during radiatoin - I must say the Erbitux was very hard on me, lots of side affects). I had radiation for 12 weeks (had to stop a few times due to neck burn and rough side affects of the Erbitux).
To date I have lot 75lbs (I started at 321 pounds and now way 248). I can tell you it was absolutely the toughest thing I have ever been through. I am so very glad I had the feeding tube inserted before treatments ever began, anyone who asks my opinion I would say yes, have the tube installed. If I had not had the tube I would have been much worse off.
I could go into all the side affects and post treatments issues I had but there is time for that later. Do be prepared for recovery "after treatments" to take several months ...everybody is different, but best to be prepared. Ensure nutritional drink became my best friend...stock up on that now.
Be sure and speak how and what you want to your doctors, ask lots of questions. My doctors were / are great and they really responded well to my wishes / questions.
My prayer for you is you sail through your treatments or that you find you do not even have cancer ...but if you do I want you to know HPV realated cancer responds very well to the treatments (per stats) and your outlook is good.
You will need family and friends more than ever, I hope you will consider my wife and I your "board friends" as you go thru the next few months.
Prayers for you Kristy and your family. Keep us posted.
Tim / Jennifer0 -
Been there
Hi Kristy,
Wow, does your description of your symptoms sound ever so familiar. It seemed that out of no where a lump the size of a golfball popped up on the left side of my neck. I had not had my usual energy for a number of months and had gone to my Dr. and even had a MRI that did not show what was really happening with me. But when the lump along with the ear pain came I knew I was in real trouble. A byopsy by a ENT confirmed the worst. He gave me a 12% chance of survival and it was unlikely I'd see Christmas. This was in June and I began rad-chemo treatments in late July. It was scary and a rough road but I'd do it all over again.
This all took place in 1991 and I give thanks and pray for all of us every day and night. You are courageous, strong and bright and you will beat the devil. You have everything to live for and a loving cheering section at this site.
Thinking of you and your wonderful family. Josh r.0
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