Thought to be HPV + ....now it's negative??

cureitall66

Due to not being a smoker and heavy drinker, original ENT and U of M Hospital(ENT also)assumed HPV. Now we just got a call that it's negative for HPV from original ENT??? UofM (ENT)is going to order another test.

They say this can change the treatment plan now. We understood the HPV having good prognosis.

We realize most doctors go after treatment and not the cause, but just very frustrating.

Still waiting for confirmation that the "hot spot" from Pet (prior to treatment) in stomach is nothing. If it was HPV derived, there was a good chance the stomach is not cancer. Scope for that will be done Monday and possibly biopsy and results later for that. Hoping it is just an Ulcer flare or something minor. All this waiting is pretty tough.


Anyone have the same thing happen to them?

Skiffin16

Calm Down...
Cris, I realize this is overwhelming..., but you are going to give yourself an ulcer.

You can second guess, research to no end, and worry constantly.... Unfortunately, none of that is going to change what already is.

You had mentioned last week as I had mentioned also. More than likely whatever is going on in the stomach isn't cancer related...or I believe as you mentioned the MD said it would be a first.

If it turns out not to be HPV derived, there are plenty survivors here that have had what your facility is calling the "standard" protocul and have had great results and successful treatment.

There are no guarantees....

I know this is hard to read, but there are many success storys here, both HPV, and not. Both older platinum based, taxotere, 5FU based with successs and a few not, same with the Erbitux.

We are all different, we all respond, recover. and heal differently.

The only thing I can really tell you..at least from observations here... The wins greatly outweigh the losses.

My advice, though I know it's extremely hard...

Share these days before treatment starts as best you can, have him eat anything and everything he loves and can... It's going to be awhile before he can enjoy the food as he does now.

Thoughts and Prayers,
John

cureitall66

Skiffin16 said:

Calm Down...
Cris, I realize this is overwhelming..., but you are going to give yourself an ulcer.

You can second guess, research to no end, and worry constantly.... Unfortunately, none of that is going to change what already is.

You had mentioned last week as I had mentioned also. More than likely whatever is going on in the stomach isn't cancer related...or I believe as you mentioned the MD said it would be a first.

If it turns out not to be HPV derived, there are plenty survivors here that have had what your facility is calling the "standard" protocul and have had great results and successful treatment.

There are no guarantees....

I know this is hard to read, but there are many success storys here, both HPV, and not. Both older platinum based, taxotere, 5FU based with successs and a few not, same with the Erbitux.

We are all different, we all respond, recover. and heal differently.

The only thing I can really tell you..at least from observations here... The wins greatly outweigh the losses.

My advice, though I know it's extremely hard...

Share these days before treatment starts as best you can, have him eat anything and everything he loves and can... It's going to be awhile before he can enjoy the food as he does now.

Thoughts and Prayers,
John

Thanks John...
I'm trying to calm down so badly...I just can't keep "him" calmed down. He doesn't want to be on here, yet asking me to see if others have any experience.

I think once we have some answers and not so many obstacles right now, we can calm down and start this process. It seems like they have him running in circles. He's lost so much weight already and having to work his job and can't focus.

As a caregiver, it's hard to sit around and watch it and not react. Staying positive is what we're trying to do...but, there is still fear of so much of the unknown.

When the MD told him it would be the first if the stomach was involved, they assumed it was HPV and that does not occur. However, today the previous ENT who called said they aren't sure what kind of cancer this is now and that cancer can do anything...which in his mind threw the whole stomach thing back into the picture. Cancer of the stomach is typically not survivable.

Scared.

Skiffin16

cureitall66 said:

Thanks John...
I'm trying to calm down so badly...I just can't keep "him" calmed down. He doesn't want to be on here, yet asking me to see if others have any experience.

I think once we have some answers and not so many obstacles right now, we can calm down and start this process. It seems like they have him running in circles. He's lost so much weight already and having to work his job and can't focus.

As a caregiver, it's hard to sit around and watch it and not react. Staying positive is what we're trying to do...but, there is still fear of so much of the unknown.

When the MD told him it would be the first if the stomach was involved, they assumed it was HPV and that does not occur. However, today the previous ENT who called said they aren't sure what kind of cancer this is now and that cancer can do anything...which in his mind threw the whole stomach thing back into the picture. Cancer of the stomach is typically not survivable.

Scared.

SCC
More than likely the cancer in the throat is SCC, whether it is or isn't HPV derived.

I know where you are coming from, and I wish that I could take some of that anxiety away. Once you guys get started it hopefully will put you in a different mode.

At least it did for us, you are just in the survivor mode..do the treatments and hope for the best.

Caregivers have it much harder than we do...you guys do everything, yet are helpless in many ways.

You both will find your way through this mess.

As my buddy Kent always says on here...BELIEVE.

JG

fisrpotpe

i have read all the before posted thoughts.

i agree 100% with John

change your focus now that you know you have cancer to believing you going to kick cancer's back side, recover and move on to your new normal. i was taught by my ent coming up on 17 years that beating cancer is 60 percent Positive Mental Attitude... after going thru it all i personally believe it to be 80-90% of winning. if your worrying, dwelling and beating a dead horse all the time you will not have focus on believing you will defeat this ugly **** called cancer.

back when i was told hpv was not even talked about, then it was finding the primary. they looked and looked and scoped and could not find the primary... i then was told that's ok we are having the same results if we find it or not. you will beat this.

with all the new drugs to help with pain and the nausea it is amazing how much they help, just share your pain and whats happening and they will keep trying different things. for me very few options were not available and pain meds were not an option.

with the new equipment for radiation, it is amazing what they are doing. for me it was the old style and just hit the whole area of neck and chest. so now they can beam their way around and help save some things from getting damaged. sure wish i had the new equipment.

hell ya this is not fun for anyone and nor would i wish this on anyone but a child abuser deserves the treatment both in the neck and groin.

PMA, Believe, Faith and Never, Never, Never giving up! should be your hubby's mo jo.

prayers going out for huge wisdom for your hubby, you and the rest of family along with the doc's

john

Billie67

I am negative too
At the beginning my surgeon told me it was most likely caused by HPV and the onc ordered erbitux. However, the path came back negative. My treatment stayed the same. I have never smoked either and am not a heavy drinker, rarely drink at all. In the end, it's cancer and needs to be treated. I would try really hard to focus more on killing the beast and less on the HPV thing. As I said,my treatment was the same as it would have been if i was HPV positive.
Good luck to you!
Billie

CivilMatt

take it easy
cureitall66,

I think you are giving me an ulcer (that is a joke). Please sit down, take a breath and try to relax. The doctors will firm up the best plan for you guys (maybe the best in the world). They are most likely cut from the same cloth as all the doctors we brag about here. Whether it is HPV+ or not will not diminish the success of your treatment. Reread John’s post, don’t over think the situation, go out, have a dinner; you are just having a difficult start. At the same time it gets easier it will also become more predictable (side effect) and that is where this site will shine (advice).

You won’t make a wrong decision.

Best,

Matt

Pam M

Know How You Feel
I, too, was very disappointed to learn that my cancer was HPV negative. With my docs, the HPV status would not have changed the recommended game plan. I understand that now, many docs feel it's fine to go with a kinder, gentler treatment plan for HPV positive patients.

I was not disappointed at all with my first clean scans after treatment - and not disappointed with the clean scans that followed.

I'm hoping, too, that upon closer examination, the stomach "hot spot" turns out to have nothing whatsoever to do with cancer (like the majority of the lung questionable spots I've heard about here).

phrannie51

First of all, hot spots can be anything.....
they are being precautionary in scoping his stomach, but the chances are it is not cancer...

As I've said before, I got one of the best pieces of advice when I first got here...I too, was in a panic like you guys are, filled with the "what if's", and was told to not fight anything that isn't in front of me...don't use up valuable energy fighting that which is not on the table to be fought....there is plenty to be done, and to get ready for...and a battle ahead....prepare for what you DO know.

There are a couple people who have just started treatment, or about to...when I started treatment there were several starting at the same time....we kind of locked arms and walked thru it together....it's way easier than trying to do this walk alone...

p

VivianLee5689

phrannie51 said:

First of all, hot spots can be anything.....
they are being precautionary in scoping his stomach, but the chances are it is not cancer...

As I've said before, I got one of the best pieces of advice when I first got here...I too, was in a panic like you guys are, filled with the "what if's", and was told to not fight anything that isn't in front of me...don't use up valuable energy fighting that which is not on the table to be fought....there is plenty to be done, and to get ready for...and a battle ahead....prepare for what you DO know.

There are a couple people who have just started treatment, or about to...when I started treatment there were several starting at the same time....we kind of locked arms and walked thru it together....it's way easier than trying to do this walk alone...

p

Like you tell me take a deep breath
I know this feels like a setback, but your doctors are going to treat the cancer no matter if it is hpv positive or negative. Our doctor ordered the test on David's, but he told me after his surgery that he hadn't even looked to see if David is hpv positive. He said the treatment he uses is the same regardless of what it is. He wants to aggressively treat the cancer and try to ensure we will never have to walk this path again. Trust your doctor's. Let them help lead you through this. I find I pray for our Doctor's everyday. David will be healed from this cancer and it will be because God has sent us the right people with the right treatments for him. I have decided to walk through this valley with my husband and we will be stronger afterward. Sorry I got off on a tangent. Haven't slept to well since I have been staying at the hospital since Wednesday. I'm a little loopy, but in good spirits.

ratface

"A hill of beans"
and not an ounce more of your worry over this. It really is that insignificant. There is slightly better documented response to treatment for HPV-derived cancer but it may or may not have anything at all to do with HPV. There is also a slight disadvantage to recurrence rate with HPV derived cancers. Behavior modification may actually be easier for drinking/smoking than HPV derived. HPV folks also tend to be younger and stronger at the onset which may skew things a bit. The experts don't worry about it to much because currently not enough is known definitively in either direction. A treatment plan is a valuable frame of mindset to own. Don't let this dissuade you in the least. Forward you go.

cureitall66

ratface said:

"A hill of beans"
and not an ounce more of your worry over this. It really is that insignificant. There is slightly better documented response to treatment for HPV-derived cancer but it may or may not have anything at all to do with HPV. There is also a slight disadvantage to recurrence rate with HPV derived cancers. Behavior modification may actually be easier for drinking/smoking than HPV derived. HPV folks also tend to be younger and stronger at the onset which may skew things a bit. The experts don't worry about it to much because currently not enough is known definitively in either direction. A treatment plan is a valuable frame of mindset to own. Don't let this dissuade you in the least. Forward you go.

Love this forum....
All of you are so wonderful and powerful with your words of experience and encouragement. I'm facing today as a new day and another beginning....thanks to you all.

I guess I was overwelmed and needed to vent about this tight wrap on our minds. Soon the doctors will give us peace of mind. In the meantime I will try not to let this cancer occupy us so much and educate ourselves on what to expect with treatment etc.

Thanks again..

Tim6003

cureitall66 said:

Love this forum....
All of you are so wonderful and powerful with your words of experience and encouragement. I'm facing today as a new day and another beginning....thanks to you all.

I guess I was overwelmed and needed to vent about this tight wrap on our minds. Soon the doctors will give us peace of mind. In the meantime I will try not to let this cancer occupy us so much and educate ourselves on what to expect with treatment etc.

Thanks again..

You are doing great ..
..and everything you are feeling is normal. I found the folks on this forum to be absolutely great ...and glad you feel the same.

Tim