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TOTALLY CONFUSED AND MAD INSTEAD OF POSITIVE

luv4lacrosse's picture
luv4lacrosse
Posts: 1399
Joined: Jul 2010

For anyone who may have read my post from earlier today that indicated my Priamry Site was changed from BOT to my Right Tonsil, my wife received a call today from my Doc's APN indicating that all of the samples taken for my Biopsy last Wednesday afternoon are now all positive for the same type of cell. I guess when the Doc says after the Biopsy, "i saw no evidence of cancer in the Tongue", take it with a grain of salt until the pathology comes back.

What a blow to the good spirits. The Doc wants me to keep my appt. with him this Thursday to fill in all of the blanks. The APN says the soonest he can get OR time 8-16 and availability of the Robotic Equipment is not until 8-23. I am being seen at one of the top Cancer Institutes in this country and I guess I am expecting more.

Has anyone been through a changing scenario of where the cancer actually is?

I also have to assume the Doc is not real worried about it spreading as he feels OK with waiting this long for the Surgery.

My worry is this thing is spreading even as I type this post.

Thursady afternoon now seems like years.

Trying to stay strong, but this feels like a huge kick to the midsection.

finz2lft
Posts: 43
Joined: Jun 2010

No, dont get mad. Same thing for me, First Biopsy found nothing, the PET scan showed cancer-it was just on the opposite side of the tongue and mouth. The second biopsy confirmed this a month later. So, dont fret, at least it is found and that is important. I was also told we can delay treatment a week or so, but once we start, the damage is done if we have to stop. You are ok, you are ok, you are just stunned by all of this, and in shock. It will get better, and keep on trucking. Trust your Doctor. I love Lacrosse too. Finz2lft

luv4lacrosse's picture
luv4lacrosse
Posts: 1399
Joined: Jul 2010

Thanks.

I really thought we had our hands wrapped around this. I am just growing frustrated with the Tongue, no not tongue, just tonsil and no again, tongue and tonsil. Hearing the date for the Surgery bummed me out the most as we are moving our youngest son 6 hours away to college that week. Now I want to delay, and think if 2 weeks is OK then 3 will not matter. I am also hoping that my Doc is not aware of the long lead time for the OR and when he finds out tomorrow he will demand something sooner. My other hope is he already knows and is not concerned with not doing the surgery tomorrow. Maybe I am the only one who wants to be cut upon tomorrow.

Most importantly, you are correct in saying, "now you know where the cancer is."

Best

Mike

Joel4's picture
Joel4
Posts: 209
Joined: May 2010

When I first learned I had cancer I was concerned that every hour that passed before treatment the cancer was spreading.
My primary was and is unknown. They don't even know if it is there or not. The decision was made not to do radiation until a time where the primary location is known (if it even exists).
In other words the last treatment I have had was surgery three months ago. I worry from time to time that as the hours turn to days and the days turn to weeks and the weeks turn to months that the cancer is running rampant through my head and neck.
Those worries don't last long as the team has assured me that waiting a little extra time to begin radiation and further treatment so that as much information can be gathered will not hurt my prognosis.
Following my first PET scan in April a decision was made for surgery. If an operating room became available the next day I could have surgery that day otherwise I'd have to wait two weeks as my surgeon was going away on a trip.
I remember being annoyed thinking that if a room didn't open up I'd have two extra weeks for the cancer to spread. I ended up being told that an OR was unlikely to open up but to fast as if I was having surgery just in case. I got a call in the morning telling me to get there ASAP because surgery was scheduled in ONE HOUR. I went from thinking I had two weeks to having to rush to the OR for immediate surgery.
These kinds of things can drive us crazy if we let them but the road is certain to be a wild one so I decided early on to go with the flow...and trust in God.
I wish you the best.

Bigfuzzydoug's picture
Bigfuzzydoug
Posts: 154
Joined: Jul 2010

I'm new to all this but wow is dealing with cancer a roller coaster ride. I feel like there are multiple phases with ups and down within each...

Phase #1: "Congratulations you have cancer! No we have no answers or prognosis for you. We have to wait for your scans and pathology to come back." Have fun this first week or two wondering what your future holds for you. You won't be doing much sleeping and eating as you go through the 7 stages. Oh and... everything's the cancer. I have a slight headache - oh no! What's this pain in my side? Why does my toe hurt? Has it spread? Every little feeling causes a near panic. Is this the cancer? Is that the cancer?

Phase #2: School's in session! Time to research your brains out and try to understand what language the docs are speaking. One says one thing and another says another. This is where the real roller coaster ride starts. One doc says something that's a real emotional high and then all the air is let out of the balloon when someone else says something else. In the end, it sure does feel like that the docs are doing some guessing and just playing the odds. They get it right... They get it wrong. No one's omnipotent, but it's especially hard when that person is your Oncologist and you feel like your life is in their hands! Not so bad news, bad news, promising news, depressing news... up and down we go! (This is where I am right now.)

Phase #3: A plan of attack. At least some sort of decision has been made. Now it's the actual battle. Am I winning it? How can something with such bad side-effects and feel so bad be good for me? AM I DOING THE RIGHT THING?

Phase #4: The after-affects. Did it work? Will it come back? Is it gone for good? How long will I be in remission? What does tomorrow hold?

You know, even though I'm brand new to all of this. I get the feeling that what we truly have to offer one another - is just the simple fact that we're not alone! Whatever you're feeling and is freaking you out and keeping you up at night... there's a lot of us going through the same thoughts and feelings.

You're not alone.

greg from pa
Posts: 86
Joined: Jun 2010

Hey hows it goin? hang in there it will get better.My first diagnosis was tonsil. The family thougt that was cool because you "dont really need your tonsils anyway".Then the second opinion was base of tounge.then it was decided not to preform surgery because It was way back on the base of tounge and it was HPV positive and therefore treatable with chemo and radiation. I can relate to the stress which this can cause.I am now 1/2 way through 35 radiation treatments and 2/3 of the way through 6 chemo treatments.So far the worst time was waiting and not knowing what was next. Once my. docs established and began a plan of attck all that anxiety left me. I hope that is the case for you.The first 2 months after diagnosis I was so streessed all I did was sit around and think cancer (it relly sucked) Now I think I am just enjoying every day as it comes. I hope this makes sense. The people on this site are the greatest.Lean on them they been there.Take care. Greg

luv4lacrosse's picture
luv4lacrosse
Posts: 1399
Joined: Jul 2010

Thanks to all who have replied. I feel a little better today though I did not sleep much. I can personally relate to what each of you have said. Back to taking it "day by day." I cannot do anything about when I finally have surgery today, I will get my answers tomorrow when I visit with my Doc's.

Reading everything you all have said has brought me back down to earth.

I will keep posting my updates and thanks for being there.

Best!!

Mike

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

The timing of your surgery and getting your youngest off to college might need some planning. If you are tonsil and base of tongue with lymph nodes that need to go...you are in for some extensive surgery. Do not let them sugar coat it. Mark's surgeon who does the cutting but not the caring afterwards made it seem like it would not be a big deal. It was a big deal. Mark had his tonsil and an area around it (to get clean margins) removed (robot - awesome) along with some of his soft pallet and some of his tongue to see if anything was there. 4 days later he had all of the lymph nodes in his neck removed along with the muscle. They sent him home two day after that. Home care and recovery were rough...and I mean rough. He had a feeding tube in his nose, 3 drains coming out of his neck and he was cathed. Even after completing chemo and radiation he would still say the surgery was the hardest part.
Good luck Mike...you can do this...Mark is recovering beautifully...be prepared. Prepare your caregiver(s). The more they know the better equipped they will be to hold you up and care for you when you need it.
Best Wishes to you and everyone here,
Kim
Hope this isn't TMI (too much information).

luv4lacrosse's picture
luv4lacrosse
Posts: 1399
Joined: Jul 2010

Kimba, not too much info. at all. I am a very "black and white" person that just wants the facts. Good or bad I can handle. I see my Doc tomorrow afternoon. I spoke with his APN today and the OR time is what it is. All cases ahead of me are also Cancer, so there is no room to move cased around. I still do not have the HPV result in yet. Keeping my fingers crossed for ++++.

My wife will be doing most of my care, she is a veteran ER/Trauma Nurse, so she has seen and dealt with way wore than me when I come home.

My fear is the cancer will spread even more over the next several weeks while I am in the is waiting game for OR space. I have been told on average that most head and neck tumors take 90 days to double in size??

Anyway, I will just wait until tomorrow to hear everything.

So great to know Mark is doing well after all he (and you) have been through. Looks like this is truly a life altering experience to go through for the rest of your life.

BEST!!!

Mike

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

your posts are always rock solid and obviously heart felt and often inspiring.I hope you and mark are doing better these days.

luv4lacrosse's picture
luv4lacrosse
Posts: 1399
Joined: Jul 2010

Well, it has not even been 24 hours since I started my "woe is me post" and things are already getting better.
My wife called in some MAJOR favors at the medical center and all of a sudden there is OR time available next Monday. I still do not know if the cancer is HPV+ yet, but just finally moving forward I can at least see some light at the end of the tunnel.

Thanks to everyone who had my back since my original post last night, your words and experience with this have really eased my mind.

I look forward once I am out of surgery to actually be able to give some real advice and help to others who are just in the discovery stage.

"Keep paying it forward"

Best!!

Mike

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Kudos to your wife for being well connected. I am glad you got a surgery date sooner so some of your anxiety can be minimized.
Good luck and keep us all in the loop. We will be thinking of you and sending you good energy.
Kim

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

glad you'll be getting into the OR so much sooner. I know how keeping things moving forward helps the anxiety.

Best of luck. We'll be watching to hear about your progress.

Lisa

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Mike,

I was definitely like you..the sooner the better with surgery and treatments. Glad you got the OR sooner. Always nice to have a nurse in the family! I'll be thinking about you. Good luck and positive thoughts coming at ya!!

Greg

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Mike,
Treating Cancer is not a perfect science by any stretch of the imagination. If a Doctor thumps the table saying "this IS the way..", I would look for one who calmly tells me he "thinks this is the best way..". As such, you need to question everything till you get a god understanding and don't be afraid to make them explain 'why' and also reject an opinion if you feel that's right. Importantly, getting a second and even third opinion can be of great value if that option is available, especially if you now have a couple of weeks.

I don't envy the waiting game at al. I was fortunate and surgery was done within 4 days of diagnosis. SCC left tonsil. Surgery then IMRT with Erbitux - 7 weeks.

Wishing the best way forward for you Mike. You can get through this.

Scambuster

luv4lacrosse's picture
luv4lacrosse
Posts: 1399
Joined: Jul 2010

My wife did just that and got a good result, a bump in line for the OR. I know I can get through this.

I enjoyed hearing from you.

BEST!!

Mike

luv4lacrosse's picture
luv4lacrosse
Posts: 1399
Joined: Jul 2010

I hear that buddy, I do not like to wait. I am finally starting to learn how to drive the bus in the direction I want it to go. I never thought a scalpel was a good thing to look forward to, but that is what makes me happy now. I have no control over how invasive the surgery will actually be, I will cross that bridge when I wake up.

I have 2 nurses and a Doc in my family. The one thing I stopped doing once i became comfortable with this site was to ask their opinion as to "how bad do you think it is."

I am looking forward to being able to have been further along in this process and be able to help the next "newbie" that signs on.

Talk to you soon.

Mike

luv4lacrosse's picture
luv4lacrosse
Posts: 1399
Joined: Jul 2010

Thanks for the good word.

I should have some more definitive information to post tonight after my doctor appt.

Mike

luv4lacrosse's picture
luv4lacrosse
Posts: 1399
Joined: Jul 2010

I definitely feel the good energy. You are correct with being well connected, it definitely worked. I share this site with my wife, and want to encourage her to be my spokesperson until I am well enough to log back on. Whats really special about this site is we could literally be neighbors or live 2000 miles apart, and the feeling is the same.

Mark is very lucky to have you. You are a very strong person, and your love for Mark come through with every post you write.

BEST!!

Mike

miccmill's picture
miccmill
Posts: 247
Joined: May 2010

The day we got Glenn's diagnosis, we walked out of the ENTs office with the next appointment over 1 month away. We were definately in a fog.
Once the fog lifted, I made a phone call to the manager of the cancer treatment center whom I work with at a volunteer clinic in my city. I work in a sister hospital (for 26 years). She moved everything up to the next week and we haven't stopped moving since. That really helped.

I also found out that my nurse practitioner and MD friends don't really know the important facts about Head and Neck cancer. They know their specialities and some general evidence based information about cancers. You're right not to ask them for prognosis opinions BUT they may be a lot of help with side effect symptoms down the road.

I'm thinking of you as you start this journey. The time really does move along.

Best,
Lisa

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

...and Mike, it sounds like you are surrounded by it as well. You will get through this and then there will come a time when you enter into the Giving phase on these boards, and all the while, still Getting. It is an amazing thing. Strength and love be with you,
Kim

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

Good luck mike. Surgery is difficult, you will get through it. Take your pain meds! best to talk to your doc about the constipation complications. better believe this is a real problem.
I'll be thinking of you.

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