Posted By: AzTarHeel P.E.T. Scan tomorrow - 05-17-2004 12:03 AM
Hello all, tomorrow morning I have my first P.E.T. scan since I completed radiation in January. Wow, has it really been four months?

I originally had the test scheduled for July but my ENT said to go ahead and do it now "for my peace of mind." Well, right now I can tell you that my mind is OK but my stomach is in knots. I thought I was going to lose my lunch earlier today... And my wife is out of town... argg...

Like the day I originally found out I had cancer, this is a big benchmark. Either it's going to come back negative, and I'll continue the slow but upward healing process or it'll come back positive and... I don't even want to go there...

Here's hoping/praying I can stay completely still for 30 minutes straight tomorrow a.m... and that the results will come back positively negative...
Posted By: helen.c Re: P.E.T. Scan tomorrow - 05-17-2004 04:44 AM
Good wishes are on thier way from me to you.. tell tham you need the results NOW.. I hate waiting for results..
Let us know as soon as possble
love and hugs
Helen
Posted By: Darrell G. Rakestraw Re: P.E.T. Scan tomorrow - 05-17-2004 11:21 AM
Thoughts and prayers for the news you want to here, "Cancer free"......
Posted By: Lynn Re: P.E.T. Scan tomorrow - 05-17-2004 11:49 AM
I hope the PET Scan comes back with good results for you, Helen. I would love to hear some good news from you very soon.

Lynn
Posted By: Brett Re: P.E.T. Scan tomorrow - 05-17-2004 01:17 PM
Hoping for good news.

-Brett
Posted By: Uptown Re: P.E.T. Scan tomorrow - 05-17-2004 02:35 PM
I remember the tech scolding me because I coughed twice during the MRI and she had to start over. I was worried about choking to death on the dreaded brown strings of goo and she was worried about having to start over. I asked her if she was paid by the patient or by the hour. She didn't have a sense of humor, no surprise to me.

I hope the PET scan went well for you.

Ed
Posted By: Brian Hill Re: P.E.T. Scan tomorrow - 05-17-2004 02:38 PM
Remember that the PET will pick up lots of things besides cancer, specifically areas that are metabolizing sugars more than the rest of your body. Sometimes in areas where healing is taking place, especially so close to treatment as you are, you MIGHT show something positive there which is not cancer. This will of course need to be explored further, and will make your nerves and blood pressure numbers shambles. Hopefully they will give you a PET/CT fusion scan which is significantly more accurate than the PET alone. Best wishes for no surprises........
Posted By: Debbie Domer/Caregiver Re: P.E.T. Scan tomorrow - 05-17-2004 04:44 PM
AzTarHeel,
Prayers are going up for you for great, negative results. I know how unsettling this time is for you...may God give you peace as you test and wait!
Take care,
Debbie
Posted By: DanielleO Re: P.E.T. Scan tomorrow - 05-17-2004 05:04 PM
AzTarHeel,

Here's all my prayers for a negative scan. I'm sure everything will be just fine!

Dani
Posted By: Daniel Bogan Re: P.E.T. Scan tomorrow - 05-17-2004 08:19 PM
Good Luck AzTarHeel,

As Brian stated the combo PET/CAT scan will pick up everything. My 1st scan showed activity in the surgical bed. They couldn't say what it was as it was my first pre=treatment scan. I am having the second scan this Wed. 5/19. They will be able to compare the two scans and give me a more accurate Dx. I am sending some good vibes your way. Hope all is well!!!!

Your Friend, Dan
Posted By: KirkGeorgia Re: P.E.T. Scan tomorrow - 05-18-2004 12:40 AM
AZTARHEEL:My first test results after rad/chemo came back with suspicious results. This 6 weeks after treatment. Went in and did the surgery and just got the report 3 days ago (Friday, 5/14). No cancer. Totally cancer free. Cured. Now, I could have spent that time between suspicious results and no cancer all worried, or doing what I normally do and wait for the final results. In neither case would the outcome have been any different. So don't worry. Let the results fall where they may and do what you have to do. Worrying won't change anything and you'll have to do whatever you need to do anyhow. My prayers go with you that the end result will be the same for you as for me. Cancer free.Regards, Kirk Georgia.
Posted By: AzTarHeel Re: P.E.T. Scan tomorrow - 05-18-2004 02:36 AM
Thanks all, they told me it would be 24-48 hours before I know the results... arggg...

Actually, I'm prepared for about anything... I was pretty darn relaxed during the scan, thankfully... I actually shut my eyes for about 10 minutes and just zoned out...

I've heard enough about false positives so close to the end of treatments that this is in the back of my head if anything does come back suspicious...Will keep you posted when I hear the results... Thanks again for the prayers and "vibes"

Eric
Posted By: Gary Re: P.E.T. Scan tomorrow - 05-18-2004 12:50 PM
Hi Eric,
Don't get your expectations up - you may more disturbed after your scan for all of the reasons that Brian outlined. None of my MRI's gave me ANY piece of mind, actually exacerbating my fears. It all turned out to be NOTHING and I hope and pray that yours will as well.

Maybe this is why the NCCN guidelines don't recommend any post Tx scans except for an annual chest x-ray?!
Posted By: Lynn Re: P.E.T. Scan tomorrow - 05-18-2004 03:46 PM
Eric,

I also would like to caution you about PET. PET is notorious for giving false positives and false negatives for cancer. It's a technology that I believe will get better like CT, but for now it's just a bit dicey. Try not to worry too much.

I rooting for you!!!

Lynn
Posted By: AzTarHeel Re: P.E.T. Scan tomorrow - 05-19-2004 01:44 PM
To those of you who warned me of "false positives" I am hoping that you are right...

I got my results back this morning, and there are two "small suspicious" areas... one in a lymph node in the area that was treated with radiation... the other on the other side near my right molar...

The doctor of course said not to panic, that it could be inflamation, an infection or something like else benign. But it's suspicious enough they want me to come back ASAP for an MRI, which they say will help them get a better picture...

So, as Brian predicted, my nerves are in shambles. But as so many others have said, "It ain't cancer till they say it's cancer." so I'm hanging my hat on that big time right now...

Will keep everyone posted as we go along... Once again glad that this board exists...

Peace,
Eric
Posted By: Kris Re: P.E.T. Scan tomorrow - 05-19-2004 02:06 PM
Eric-
Yep, it ain't cancer till they say it's cancer!! Keep looking up and know that there is one more out there praying for you and your shambled nerves!! With ya - Kris
Posted By: helen.c Re: P.E.T. Scan tomorrow - 05-19-2004 02:32 PM
Eric
Think some of our treatment should involve a shrink.. to take care of all these overstreached nerves of ours.. try to stay positive..tell them ASAP means NOW.. keep us posted
prayers, love and hugs
Helen
Posted By: Uptown Re: P.E.T. Scan tomorrow - 05-19-2004 02:41 PM
Eric,

I had a "large suspicious area" in the same spot as the largest lymph node that was cancerous and the doctor even told me because it felt so hard he was pretty sure it would require a neck dissection and most likely indicated a recurrence. It went away on the next exam/scan. Please try and be positive and it ain't cancer till the pathologist proves it.

My thoughts and prayers are with you and if there was any way I could take the burden from you, I would.

Calmness and hugs your way.

Ed
Posted By: AzTarHeel Re: P.E.T. Scan tomorrow - 05-19-2004 02:51 PM
Thanks everyone for the thoughtful and quick responses... I feel a lot calmer now than I did at first...
Posted By: Lynn Re: P.E.T. Scan tomorrow - 05-19-2004 04:32 PM
Eric,

Just to calm you down a bit more. I also had a "hot" lymph node on my PET scan. They did a sono-guided needle biopsy and it was negative for cancer.

If the MRI is a better test, I wonder why they didn't use it to begin with? Call me cynical, but I think PET generates so much revenue for the owners that it is occasionally overused.

Try to rest as easy as you can.

Lynn
Posted By: AzTarHeel Re: P.E.T. Scan tomorrow - 05-19-2004 04:41 PM
Great question, Lynn... I believe I will ask my docs this next time we're in touch (which should be soon, since ASAP means now)...
Posted By: AzTarHeel Re: P.E.T. Scan tomorrow - 05-19-2004 08:26 PM
OK, here's the latest scoop -- I have my MRI scheduled for tomorrow morning at 9 a.m. in Flagstaff (about an hour away from here)... I was feeling OK about things until my ENT talked to my wife... He sounded "very concerned" after reading the PET report...

He hasn't actually seen the scan, however, just read the report... He's worried, I think, that since I'm a young guy that doesn't drink or smoke, that this may be an aggressive form that doesn't respond so well to treatment... How's that for making your day... OK, so now I'm officially freaking out...

Any and all prayers are appreciated... Will keep everyone updated... Thanks for all the support so far... You guys are awesome...

Eric
Posted By: helen.c Re: P.E.T. Scan tomorrow - 05-17-2004 04:44 AM
Good wishes are on thier way from me to you.. tell tham you need the results NOW.. I hate waiting for results..
Let us know as soon as possble
love and hugs
Helen
Posted By: Darrell G. Rakestraw Re: P.E.T. Scan tomorrow - 05-17-2004 11:21 AM
Thoughts and prayers for the news you want to here, "Cancer free"......
Posted By: Lynn Re: P.E.T. Scan tomorrow - 05-17-2004 11:49 AM
I hope the PET Scan comes back with good results for you, Helen. I would love to hear some good news from you very soon.

Lynn
Posted By: Brett Re: P.E.T. Scan tomorrow - 05-17-2004 01:17 PM
Hoping for good news.

-Brett
Posted By: Uptown Re: P.E.T. Scan tomorrow - 05-17-2004 02:35 PM
I remember the tech scolding me because I coughed twice during the MRI and she had to start over. I was worried about choking to death on the dreaded brown strings of goo and she was worried about having to start over. I asked her if she was paid by the patient or by the hour. She didn't have a sense of humor, no surprise to me.

I hope the PET scan went well for you.

Ed
Posted By: Brian Hill Re: P.E.T. Scan tomorrow - 05-17-2004 02:38 PM
Remember that the PET will pick up lots of things besides cancer, specifically areas that are metabolizing sugars more than the rest of your body. Sometimes in areas where healing is taking place, especially so close to treatment as you are, you MIGHT show something positive there which is not cancer. This will of course need to be explored further, and will make your nerves and blood pressure numbers shambles. Hopefully they will give you a PET/CT fusion scan which is significantly more accurate than the PET alone. Best wishes for no surprises........
Posted By: Debbie Domer/Caregiver Re: P.E.T. Scan tomorrow - 05-17-2004 04:44 PM
AzTarHeel,
Prayers are going up for you for great, negative results. I know how unsettling this time is for you...may God give you peace as you test and wait!
Take care,
Debbie
Posted By: DanielleO Re: P.E.T. Scan tomorrow - 05-17-2004 05:04 PM
AzTarHeel,

Here's all my prayers for a negative scan. I'm sure everything will be just fine!

Dani
Posted By: Daniel Bogan Re: P.E.T. Scan tomorrow - 05-17-2004 08:19 PM
Good Luck AzTarHeel,

As Brian stated the combo PET/CAT scan will pick up everything. My 1st scan showed activity in the surgical bed. They couldn't say what it was as it was my first pre=treatment scan. I am having the second scan this Wed. 5/19. They will be able to compare the two scans and give me a more accurate Dx. I am sending some good vibes your way. Hope all is well!!!!

Your Friend, Dan
Posted By: KirkGeorgia Re: P.E.T. Scan tomorrow - 05-18-2004 12:40 AM
AZTARHEEL:My first test results after rad/chemo came back with suspicious results. This 6 weeks after treatment. Went in and did the surgery and just got the report 3 days ago (Friday, 5/14). No cancer. Totally cancer free. Cured. Now, I could have spent that time between suspicious results and no cancer all worried, or doing what I normally do and wait for the final results. In neither case would the outcome have been any different. So don't worry. Let the results fall where they may and do what you have to do. Worrying won't change anything and you'll have to do whatever you need to do anyhow. My prayers go with you that the end result will be the same for you as for me. Cancer free.Regards, Kirk Georgia.
Posted By: AzTarHeel Re: P.E.T. Scan tomorrow - 05-18-2004 02:36 AM
Thanks all, they told me it would be 24-48 hours before I know the results... arggg...

Actually, I'm prepared for about anything... I was pretty darn relaxed during the scan, thankfully... I actually shut my eyes for about 10 minutes and just zoned out...

I've heard enough about false positives so close to the end of treatments that this is in the back of my head if anything does come back suspicious...Will keep you posted when I hear the results... Thanks again for the prayers and "vibes"

Eric
Posted By: Gary Re: P.E.T. Scan tomorrow - 05-18-2004 12:50 PM
Hi Eric,
Don't get your expectations up - you may more disturbed after your scan for all of the reasons that Brian outlined. None of my MRI's gave me ANY piece of mind, actually exacerbating my fears. It all turned out to be NOTHING and I hope and pray that yours will as well.

Maybe this is why the NCCN guidelines don't recommend any post Tx scans except for an annual chest x-ray?!
Posted By: Lynn Re: P.E.T. Scan tomorrow - 05-18-2004 03:46 PM
Eric,

I also would like to caution you about PET. PET is notorious for giving false positives and false negatives for cancer. It's a technology that I believe will get better like CT, but for now it's just a bit dicey. Try not to worry too much.

I rooting for you!!!

Lynn
Posted By: AzTarHeel Re: P.E.T. Scan tomorrow - 05-19-2004 01:44 PM
To those of you who warned me of "false positives" I am hoping that you are right...

I got my results back this morning, and there are two "small suspicious" areas... one in a lymph node in the area that was treated with radiation... the other on the other side near my right molar...

The doctor of course said not to panic, that it could be inflamation, an infection or something like else benign. But it's suspicious enough they want me to come back ASAP for an MRI, which they say will help them get a better picture...

So, as Brian predicted, my nerves are in shambles. But as so many others have said, "It ain't cancer till they say it's cancer." so I'm hanging my hat on that big time right now...

Will keep everyone posted as we go along... Once again glad that this board exists...

Peace,
Eric
Posted By: Kris Re: P.E.T. Scan tomorrow - 05-19-2004 02:06 PM
Eric-
Yep, it ain't cancer till they say it's cancer!! Keep looking up and know that there is one more out there praying for you and your shambled nerves!! With ya - Kris
Posted By: helen.c Re: P.E.T. Scan tomorrow - 05-19-2004 02:32 PM
Eric
Think some of our treatment should involve a shrink.. to take care of all these overstreached nerves of ours.. try to stay positive..tell them ASAP means NOW.. keep us posted
prayers, love and hugs
Helen
Posted By: Uptown Re: P.E.T. Scan tomorrow - 05-19-2004 02:41 PM
Eric,

I had a "large suspicious area" in the same spot as the largest lymph node that was cancerous and the doctor even told me because it felt so hard he was pretty sure it would require a neck dissection and most likely indicated a recurrence. It went away on the next exam/scan. Please try and be positive and it ain't cancer till the pathologist proves it.

My thoughts and prayers are with you and if there was any way I could take the burden from you, I would.

Calmness and hugs your way.

Ed
Posted By: AzTarHeel Re: P.E.T. Scan tomorrow - 05-19-2004 02:51 PM
Thanks everyone for the thoughtful and quick responses... I feel a lot calmer now than I did at first...
Posted By: Lynn Re: P.E.T. Scan tomorrow - 05-19-2004 04:32 PM
Eric,

Just to calm you down a bit more. I also had a "hot" lymph node on my PET scan. They did a sono-guided needle biopsy and it was negative for cancer.

If the MRI is a better test, I wonder why they didn't use it to begin with? Call me cynical, but I think PET generates so much revenue for the owners that it is occasionally overused.

Try to rest as easy as you can.

Lynn
Posted By: AzTarHeel Re: P.E.T. Scan tomorrow - 05-19-2004 04:41 PM
Great question, Lynn... I believe I will ask my docs this next time we're in touch (which should be soon, since ASAP means now)...
Posted By: AzTarHeel Re: P.E.T. Scan tomorrow - 05-19-2004 08:26 PM
OK, here's the latest scoop -- I have my MRI scheduled for tomorrow morning at 9 a.m. in Flagstaff (about an hour away from here)... I was feeling OK about things until my ENT talked to my wife... He sounded "very concerned" after reading the PET report...

He hasn't actually seen the scan, however, just read the report... He's worried, I think, that since I'm a young guy that doesn't drink or smoke, that this may be an aggressive form that doesn't respond so well to treatment... How's that for making your day... OK, so now I'm officially freaking out...

Any and all prayers are appreciated... Will keep everyone updated... Thanks for all the support so far... You guys are awesome...

Eric
Posted By: Lisa in Florida Re: P.E.T. Scan tomorrow - 05-19-2004 08:32 PM
Lots of prayers coming your way from Kansas.

Sincerely,
Lisa
Posted By: Carol L Re: P.E.T. Scan tomorrow - 05-19-2004 08:32 PM
Eric, I am praying for you and thinking about you...God Bless You!!!!Carol
Posted By: Mark Re: P.E.T. Scan tomorrow - 05-19-2004 11:25 PM
Eric, My cyber hand is streched out for you to grab if you need it. Be thankful your doctor is being very proactive. Take a deep breath and think CALM....
Posted By: Lynn Re: P.E.T. Scan tomorrow - 05-20-2004 12:45 PM
Eric,

My prayers are being lifted up for you. I know these are the most difficult days while you wait, but try to do normal things while you wait for the results. I hope the radiologist reads the scan right away and you can get the results before the weekend. I was constantly bugging my doctor for results. I also am praying that you get good news.

Lynn
Posted By: Gary Re: P.E.T. Scan tomorrow - 05-20-2004 10:13 PM
Hang in there Eric - it's probably just scar tissue and they want to be sure. Like I said in an earlier post both of my MRI's sucked but still turned out to be nothing.

I'll add you to my prayer list never the less.
Posted By: AzTarHeel Re: P.E.T. Scan tomorrow - 05-20-2004 10:49 PM
Hello again, folks, Eric here... Well, here's the verdict. The MRI "sucked" as Gary so eloquently put it, so they followed that scan up with a CT/needle biopsy this afternoon (giving me the trifecta for this week -- a PET scan, a CT scan and an MRI).

So I'm now anxiously awaiting those results, which the docs told me I should get tomorrow afternoon. Gary, I hope it's just scar tissue for sure or something else benign!! While "it ain't cancer till they say it's cancer," all signs point to a recurrence from what everyone is saying...

The one bright spot, if you can call it that, is that the node that's showing up "suspcious" falls out of the original field where they did the radiation. That stinks, of course, that they missed this. But it's good news in that it doesn't necessarily mean this tumor is just laughing at radiation. Everything within the IMRT radiation field came up negative...

So basically, unless things come back negative tomorrow (still praying for that!), I'm going to go another round with cancer -- a neck dissection this time (wasn't done originally) and another round of radiation to this new area... yippee :rolleyes:

I'm still holding out hope that this is scar tissue or something like this but realistically....

I will say this. My ENT has been unbelievable. He's been a bulldog for us. He first ordered the early PET scan when I told him my neck was still feeling tender (it was originally scheduled for July). He got my MRI scheduled for today, when all the other powers that be had me pencilled in for next week. He pulled strings to get me the biopsy today rather than next week. And he pulled more strings to get the folks in the lab to get me results (hopefully) before the weekend...

He said he lost sleep over me last night and then actually cried a little bit as he told me he still aims to save my life... I was touched because this is a pretty tough guy. I think I'm really affecting him because we're the same age (early 30s)...

Anyway, so the beat goes on... prayers and warm thoughts continue to be appreciated... I will continue to keep folks posted... Those of you who have been through recurrence stuff, I'd love to hear from you if the final word is positive... I already know a lot of the reality, and it's not good (which is my doc got so choked up)... Throw in some hope as well... Thanks wink

Love to all of you... You don't know how all of you have inspired and blessed me...

Eric
Posted By: Mark Re: P.E.T. Scan tomorrow - 05-20-2004 11:40 PM
We need a special OCF pin (or something) for a doc that gets this deep for us. I AM praying, please tell him my prayers include him too.
Posted By: helen.c Re: P.E.T. Scan tomorrow - 05-21-2004 02:45 AM
It makes such a change to hear of a doc going that extra mile.. there are more posts here about docs that were to conservative at the start.. Hang on in there Eric.. You can do this..
prayers love and hugs
Helen.
Posted By: Uptown Re: P.E.T. Scan tomorrow - 05-21-2004 03:48 AM
Eric,

I am so sorry for all you have had to endure this week especially. You are truly blessed to have been paired with such a dilligent health care provider. I am hoping and praying that your results will be nothing but good news! May God continue to bless you and shower His love and healing upon you.

Ed
Posted By: Cathy G Re: P.E.T. Scan tomorrow - 05-21-2004 08:03 AM
Eric,

Here's hoping for only the best results for you.

I totally agree with your point about the value of a doctor who keeps on the trail of this disease and its after-effects. I've been fortunate that the oncologist who was the "point man" on my case 15 years ago has stayed on ever since as my primary care doctor. He still sees me 2-3 times a year and constantly tells me to call him about any symptom, any time, anywhere. (When I had to call his nurse about a bad case of poison oak, I told her the doctor needed to keep me on for comic relief.) Given how nasty and persistent oral cancer can be, it's really important to know you have a doctor who knows your history well and can be an advocate and who will expedite tests when they need to be expedited.

Cathy
Posted By: DQKCK Re: P.E.T. Scan tomorrow - 05-21-2004 09:57 AM
Eric ,
Hoping for the best results here too. My husband is playing the waiting game too. He had base of tongue stage 3 or 4 did the radiation and chemo ended one year ago April still can't eat well and now has a spot blemish on his lung and the oncologist said he should have it removed ca or not so he has an appointment wed to see someone. The waiting game stinks . He's a mason and started working a little and started feeling good about himself after a long winter . Anyone had a lesion removed from their lung? How long recovering? I'm a nurse but he tends to ignore me.He also minimizes things but I know he's a basket case. I'm concerned he won't go for removal if he thinks it's a big deal because he went through so much last round. Unfortunately I'm big on personal choices and have to keep my mouth shut. Very hard to do if you knew me.This whole situation for him and many of you here is like waiting for the axe to fall and really sucks
for all . I'd be greatful if anyone has a positive experiance to share.You have all been so helpful in the past because I don't have anyone to share my concerns even getting it out helps. So I'll already say thanks .
Diane
Posted By: Daniel Bogan Re: P.E.T. Scan tomorrow - 05-21-2004 12:11 PM
Hi Erik,

They sure put you through the wringer this week. Nice to see you keeping us up to date. I am praying for good results from Wisconsin. I am just one of many pulling for you. Waiting for results drive me nuts! I try to just keep that old sayin going. "It ain't cancer til they say it's cancer" Keep the upbeat tone of your posts going.

Dan
Posted By: Lynn Re: P.E.T. Scan tomorrow - 05-21-2004 01:02 PM
Eric,

After all that, you ended up with a CT after all. CT is what detected my lung mets.

I am proud of your physician for going the extra mile for you. I think your assessment is right on, he is wasting no time in getting a proper diagnosis. Time is of the essence. He wants to pull out all the stops so that your chance for a cure is as good as it can be.

Thinking of you often.
Lynn
Posted By: Eileen Re: P.E.T. Scan tomorrow - 05-21-2004 02:29 PM
Eric,

Sorry to hear you may have to go through this again. Neck dissections are a 'walk in the park' in comparison to radiation. I have survived two 4 years apart. My second cancer was not a reoccurance of the first but a completely new one that cropped up 4 years to the day from the first one. While it is disheartening to have to do it all over again, IF it is cancer, they probably have caught it early by their diligence and the sooner it is out, the better. Some of us do survive a second go round.

Still hoping it's a false positive.

Take care,
Eileen
Posted By: DanielleO Re: P.E.T. Scan tomorrow - 05-21-2004 05:19 PM
Eric,

My mom had a recurrance (or so they say) but it was very close to the primary cancer so we are still unsure of it being a recurrance. She didn't have radiation with the first surgery although they did the radical neck dissection with no nodes positive and the neck dissection was not that bad at all especially when compared to the radiation and chemo. Even though she had IMRT after the second surgery they radiated bascially her entire mouth area both sides of her neck and even the chest area (heavily concentrated on the right side where the cancer was).

I am praying so hard for you that it is not a recurrance. Its the pits to have to go through more surgery and treatment. I checked your profile and realized that you are my husbands age. I can't even begin to imagine how hard this is for you and your wife. I will be praying for you both.

Take Care,
Dani wink
Posted By: AzTarHeel Re: P.E.T. Scan tomorrow - 05-21-2004 10:31 PM
Eric Update -- A GOOD DEVELOPMENT!! but not completely out of the woods yet...

Hello all, just got off the phone with the ENT (after sweating bullets all day)...

Here's the scoop: the biopsy of the lymph node came back negative for cancer (great news indeed). But my doctor, considering all the circumstances, wasn't 100 percent ready to pronounce me out of the woods yet. He wants to either biopsy again or possibly even take the whole lymph node out just to be sure.

I think the concern is over the quality of the sample they got with the CT-guided biopsy. They know they were inside the node, because I watched the pictures on the screen in front of me. But he had to take three samples to be sure (and didn't really like the first two too well)...

Anyone else been down this road before (i.e. multiple biopsies, still having questions even though the report was negative)?

I'm breathing a big sigh, at least for the weekend, though I'm being cautiously optimistic because of the nature of this disease and reality in general...

Love to all who have prayed for me and my (amazingly wonderful) wife... will keep everyone updated on the latest...

I'm definitely staying in prayer for Daniel and his situation... prayer does work... hoping for similiar developments in his case...

Eric
Posted By: Uptown Re: P.E.T. Scan tomorrow - 05-21-2004 11:30 PM
Erik,

I hope this news eases your burden this weekend. Be sure and tell your doctor how much all of us appreciate his dilligence and suspicious nature! He is a jewel. I will be praying especially hard for you this weekend.

Ed
Posted By: minniea Re: P.E.T. Scan tomorrow - 05-21-2004 11:45 PM
Erik,
That is wonderful news, take the weekend to celebrate!
Love,
Minnie
Posted By: DanielleO Re: P.E.T. Scan tomorrow - 05-22-2004 12:47 AM
Eric,
Before my mom went in for her second surgury she noticed a swollen lymph node in the back of her neck. The nodes in the front had been removed it was really small just like the size of a pea my mom was all prepped up for surgery when she mentioned it to her ENT he stopped the surgery to do a needle biopsy on it. He took 5 samples just to be safe and we went home and waited the 5 days for the results. The longest five days of my life. The results were negative and even after chemo and radiation the node is still there the same size and hasn't changed at all. Her doctor's all tell her that sometimes they may stay swollen for no good reason and maybe it has always been swollen she just never noticed it before. My sister has multiple swollen nodes in her neck and her doctor said they were swollen because she is extremely dehydrated (she's never had cancer).

Your news is awesome.. I am soooo happy for you. Have a terrific weekend.

Dani
laugh
Posted By: Uptown Re: P.E.T. Scan tomorrow - 05-22-2004 05:28 PM
Eric,

Dani's mom's story reminds me of the huge swollen lymph node under my jaw that started this intense journey for me. It is still over 1 cm after the radiation but it has not shown any cancer on any scan since radiation last October. I got a copy of the medical oncologist's reports and I noticed he made a comment that a neck dissection appeared inevitable back in November because of the still hard mass. I am hoping the biopsy was accurate (and my doctor is, too eek ).

Ed
Posted By: Lynn Re: P.E.T. Scan tomorrow - 05-22-2004 05:48 PM
Eric,

I work for a group of radiologists and they don't always get a good speciman to work with. (not enough cells for the pathologist to work with) That's why they sometimes take 2 & 3 samples. Rest easy this weekend. Take one step at a time! Celebrate the small victories.

Lynn
Posted By: helen.c Re: P.E.T. Scan tomorrow - 05-22-2004 05:52 PM
Eric
You are doing well.. thank goodness for some good news..and yes biopsies are still only a guide.. the histolgy is only as good as the sample.. my last one was subject to 'cross cutting'which left an undecided result of 'may be' it is not invasive yet.. so ride with it kid..
love and hugs
Helen
Posted By: Daniel Bogan Re: P.E.T. Scan tomorrow - 05-22-2004 10:44 PM
Erik,

It's about time we got some good news. This week was kind of a bad week for several of us on the board.

I would be dancing around this weekend If I were you. Enjoy the small victories while you can. We love to hear good news. Here's hoping it's all downhill for you.


Your Friend, Dan
Posted By: AzTarHeel Re: P.E.T. Scan tomorrow - 05-23-2004 12:39 AM
Thanks Dan -- you remain in my prayers and thoughts daily...

Eric
Posted By: AzTarHeel Re: P.E.T. Scan tomorrow - 05-25-2004 12:44 PM
Quick update on my front --

The initial biopsy taken last week of my "suspicious" lymph node came back negative for cancer. My ENT feels, considering my history, that this isn't enough evidence to fully convince him that it's not cancer. So he's going to go ahead and take out the whole node and have it checked out.

I'm totally fine with that. Better to be safe and proactive, than to wait around and let it grow if it is cancer. Of course, he's booked until late next week, so I get to play the waiting game for awhile yet before this proceedure is done. In the meantime, he wants me to take antibiotics to see if that might knock out any infections I may have. Nerve-wracking indeed.

Here's another crappy part to all of this. A few days before my initial PET scan that started all of this, I got a job offer from a newspaper in North Carolina, which would put my wife and me much closer to our families than my current situation (we live in Arizona right now). They loved my resume and writing samples. They offered me the job sight unseen. Wow!

But when all these "suspicious findings" showed up on tests and I let them know why we were hedging on accepting the offer, they dropped me faster than all of us dropped our radiation masks after our last rad appointment. It's pretty frustrating, but if I'm going to believe God is in control of my health, then He must know what He is doing with regards to jobs, etc. LOL

I guess it's the lame excuse they gave me as to why they were withdrawing the offer that hurt the most, especially after enduring what I endured nerve-wise the past week or so...

I realize job stuff is petty in light of what many on the boards are going through, but it's a bummer nonetheless...

My love and prayers to all of you... Thanks for listening...

Eric
Posted By: helen.c Re: P.E.T. Scan tomorrow - 05-25-2004 12:52 PM
Hi Eric
What a bummer...I hope the jerk that dropped you so fast NEVER has to face what you have been through.. Do they not realise that what you have been through is what made you the writer you obviously are today.. Crazy.. hope your week doesn't drag to much.. sooner it's done the better..
prayers.. love and hugs
Helen
Posted By: Brett Re: P.E.T. Scan tomorrow - 05-25-2004 03:06 PM
Eric,

I'm glad you're being proactive regarding your suspicious lymphnode, but sorry to read about your missed job opportunity and a chance to move back east. I'm affraid that if you share your challanges with other future employers, they may be just as reluctant to hire you, though hopefully not as cheesey about it. There is some debate over how much to share with a prospective employer as we all want to be forthright and honest about our journey, but this may not be the best policy where an employment search is concerned.

-Brett
Posted By: Lisa in Florida Re: P.E.T. Scan tomorrow - 05-25-2004 03:15 PM
mad
Erik,

That just sucks. Especially since you would have to COBRA anyway for the first year of employment with them. Doesn't sound like someone I would want to work for, I am saying big prayers for your upcoming surgery and job situation.

Whew, I never react like this. That felt pretty good! Watch out guys, we may have unleashed a monster. :rolleyes:

Sincerely,
Lisa
Posted By: AzTarHeel Re: P.E.T. Scan tomorrow - 05-25-2004 03:46 PM
Lisa -- I appreciate your "monster" and have felt pretty much that way all morning...

Thanks, everyone, for sticking up for me... The job thing just seemed like such a cool opportunity -- a fresh start in many ways, a chance to live in the beautiful NC mountains, plus a wonderful chance at being much closer to family and friends...

It kind of gave me extra hope as I went through this latest series of tests and such... But, no time to sit around and feel sorry for myself -- I've got to rally and put my "fighting" attitude back on for the road ahead... I will, however, drown my sorrows in some Chinese food this afternoon, being thankful for each bite and for the ability to taste it and enjoy it (except for the really spicy stuff)... Thanks again...

Eric
Posted By: Mark Re: P.E.T. Scan tomorrow - 05-25-2004 05:16 PM
Let's see...how far is Cottonwood from Las Vegas? I think you know why some things happen, Because they are supposed to! smile
Posted By: minniea Re: P.E.T. Scan tomorrow - 05-26-2004 01:13 AM
Hey Eric,
When you're a huge, famous sports writer 20 years from now that little old newspaper in North Carolina will regret acting like they have. I, for one, am going to take advantage of the moment.......can I have your autograph now??
Blow them off.
Love,
Minnie
Posted By: AzTarHeel Re: P.E.T. Scan tomorrow - 05-26-2004 07:57 PM
Ironically, the newspaper editor who withdrew the job offer from me yesterday had a glowing story in her paper today about Relay For Life and cancer survivors. The focus was all about how a diagnosis of cancer doesn't have to be a death sentence anymore, etc.

It was tough to read that, knowing deep down that my cancer journey is likely the thing that scared her and her bosses off... I was pretty much over this whole thing until I read that a few minutes ago, then that sinking kicked-in-the-stomach feeling came back...

Sorry, folks, I'll rally... I know God is in control... thanks for letting me vent one more time...
Posted By: aussieh Re: P.E.T. Scan tomorrow - 05-26-2004 08:07 PM
I am thinking positively for you Eric, down here in Oz.

From Helen, with love
Posted By: Uptown Re: P.E.T. Scan tomorrow - 05-26-2004 08:19 PM
Eric,

I am glad the biopsy came back negative and relieved at the proactive approach. Every time I hear the dread r- word, I wonder if I should have had the neck dissection.

Bummer about the job thing. Better to find out the depth of their character before you get all the way out there. I hate giving advice but I would not be able to resist the temptation to send the editor the article with a few hand written comments on it. You don't have to accuse her as much as relay your feelings as you did above. Keep in mind, I am more direct and confrontational than most. :p

I hope your wait is not a teepee and a wigwam! (You know...two tents..or is that too tense?.)

Ed
Posted By: Marica Re: P.E.T. Scan tomorrow - 05-26-2004 11:21 PM
Eric
just wanted to add my good wishes for you.
As for the NC job, their loss wink .
keep your chin up and May your God Go With You.
Marica
© Oral Cancer Support - Survivor / Patient Forum