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Three steps forward, one back

yensid683's picture
Posts: 320
Joined: Apr 2012

on the steps forward side...

The PET scan shows great improvement and only 1 spot that was hot. The original approach was to wait and watch, but the tumor board recommended removal of the nodes

Step 2, PEG tube came out Monday the 15th! It is SO NICE to be able to sleep on my stomach and not have to shower with 20 or so inches of tube sticking out of my stomach. U will have a second naval thought

Step 3, a selective neck dissection Tuesday the 16th that was outpatient surgery. I didn't feel all that bad afterward, had some pain that hyrdoco handled easily. Drains were removed yesterday and I don't even need any pain med, not even OTC!

Step backward - pathology shows the one node did have "residual active disease". I'm not too encouraged by that report, I'd hoped that the hot spot would have been scar tissue or something else benign, but such is not the case.

The surgeon was confident that they got everything out in the branch, the incision runs from my ear down to my collarbone, and the sutures are under the skin, much like blind stitching on fabric, so I don't think that I'll have much of a scar.

I'm now wondering what is next? Additional treatments? Wait and see? My wife is quite concerned and I take the report of "got it all out" as great news, but that nagging concern pulls at the back of my mind......

Posts: 660
Joined: Mar 2012

we fight this beast and when and if we are blessed to hear NED or some other positive news we seem to be waiting for the other shoe to drop. Not all but many of us. I was recently advised I was NED based on CT scan and Doctors review of my thoart and neck and I thank God everyday for my healing. But to my dismay and Im sure Gods I still worry about aches and pains being cancer. I guess in the beginning that is normal or abi-normal as John would say. So I get it but "got it all out" sounds pretty good to me. NED sounds good to me when I heard it, so maybe we just need to let go of the what ifs (easier said than done) and trust all is well and we have been blessed to this point. Heres to no more nagging thoughts......

longtermsurvivor's picture
Posts: 1845
Joined: Mar 2010

is to remove residual nodal disease. this does not imply a problem, it simply solves one. you actually should be overjoyed. look at the reverse: a few years ago the standard was node disection first, then rads. I had my formal neck dissection about three weeks before rads began to treat the primary. sixty six nodes removed, one positive. they just did it backwards to what is done in many cases now.


phrannie51's picture
Posts: 4678
Joined: Mar 2012

I love you Longtermsurvivor for being so knowledgable!! When I first read this (as I do with so many of our posts here)I put myself in your shoes, and ask how would I be feeling about this. My inclination was that the node had a little bit of cancer in it, and now it's gone...ah, but I wouldn't trust my own instincts...LOL. LTS says it right there...problem solved! Phew....Besides in this battle we're in, 3 steps forward with one back is stepping pretty darn good.

Your scar will basically disappear...most everybody here says theirs became hardly noticable....even if it does show for a while, it's at least something to SHOW FOR all that we have been thru. My skinny body and short hair doesn't tell half the damn story...LOLOLOL.


Crazymom's picture
Posts: 339
Joined: Nov 2011

I sometimes wish they had taken out my lymph nodes. My Cat Skan was negative, but I wonder sometimes if there could be some small amount of cancer left over and if they had taken the nodes it would be all be gone. You have to trust your doctors and I know I have good doctors and they did what they thought was best. I had tonsil primary and two nodes and have had no surgery just chemo and rads and all looks good right now. Ann

CivilMatt's picture
Posts: 4373
Joined: May 2012


My order of treatments was surgery first followed by rads and chemo, but I had obvious areas of cancer. Which ever order they took with you the outcome appears to be good. Now roll around on your belly some more (without a care).



yensid683's picture
Posts: 320
Joined: Apr 2012

The more I think about it, the more I'm convinced that I can spend too much time on trivial concerns.

I'm (at least as far as I'm concerned) NED!

Chemo, and chemoradiation therapy killed off the cancer. The primary is gone, no visual evidence, none of the lymph nodes originally involved were even palpable just half way through rads. I had a great PET scan, especially when I compared it to the original (think Las Vegas strip vs a power failure) And now they successfully took out the offending nodes that had that small spot!

How in the hell can I not be overjoyed that I'm NED!

I'm looking forward to the future, sure they'll be tests every three to six months, but why worry about them? I'm going to be fine. If it comes back, well it comes back. I'll face that if - in a remote chance - it does come back. I have a long life ahead of me, I'll be there to walk my daughters down the aisle, I'll be there to hold and spoil grandchildren, I'll be there to offer sage advice, I'll be there to hold my wife in my arms forever!

Thank you all for helping me put this into perspective

May we all be NED, may we all find peace and happiness!


Posts: 1914
Joined: May 2012

I am so glad you have been what I deem as proactive in your own health care...continue to ask those nagging questions to your health proffessionals. I had only 7 lymph nodes removed in the neck area as they had lit up in the original pet back in Nov '11. Only to find out very unusual spread of my dx spreading this way. But trust in my doctor, green light to do. (they did not have cancer-thank God !) Trust in ourselves (as we know our bodies the best) and trust in our doctors is soooo important. Learning acceptance of o.k. today is great and living life every day without this nagging what if's is a learning experience I wouldn't wish on my worst enemy. I'm so happy things are moving positively forward for you and your family. Katie

Hondo's picture
Posts: 6643
Joined: Apr 2009

All we can do is to take it one step and one day at a time, there will always be good and bad reports. To me it sounds like you are doing well after all you have been through. When my NPC came back a third time and the doc could not do anything more; I changed my diet. I know there are some here that don’t believe changing what you eat will help, but for me I am still here 7 ½ years later and that is 6 ½ years passed the time I was supposed to have died according to my Oncal doc.

Take it easy and give it one day at a time my friend

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