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My dad - update

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

Hello my dear friends!!

I don't post much because I'm trying to live life between scans and check-ups without thinking all the time about it. But I read your posts almost daily and keeping my fingers crossed that you all will be ok.

My dad is 6,5 months out of treatment (Cisplatin with 35 rads). On January he had his first CT. Everything looked ok, no cancer anywhere. Only one little lymph node was still a bit enlarged (2 x 1 cm) and it was partly "hot" in the scan.

Now, today he had another check up. The onc/rad doctor checked everything inside his mouth with fingers and a light. Everything looked clean and nice. No sign of cancer on his tongue or anywhere else in mouth or throat. She touched his skin and neck and couldn't feel anything - no enlarged lymph nodes. My mom asked her if she can feel that node which was mentioned on CT in January. The doc said nothing was there or at least she can't feel it. But she ordered an ultrasound of the neck which will take place on April 3rd (next week). My mom asked her what if there's still that lymph node which lit up on CT. The doc said that he can then have an operation (if it's not too close to the vein). My mom got scared and asked what does that mean... The doc didn't want to comment that because those are just speculations (she said) and we should wait for the ultrasound. There's probably nothing there anymore, and ultrasound is just to make us sure.

So, all in all... everything is ok, no cancer anymore in his neck... But it does worry me a bit what if that lymph node shows some activity and they can't operate? But even if there is a little lymph node which can still show cancer - isn't it small enough to operate??? Those words from doctor confuse me a bit... Many of you here had neck dissections, so it is quite funny that my dad can't have it if he'll need it?? But as doctor said, there's probably nothing there... and CT in January just showed false "hot spot" like many people have...

Let's hope this is our case too... On the other side, my dad is extremely optimistic. He believes there's nothing there anymore and that cancer will never be back again... What an optimism, ha? Smile It's me and my mom who get worried about every little thing. So now we speculate in advance without knowing the whole picture. It will be revealed on ultrasound next week.

Dad feels good... Can eat more and more solid food, still has some pain on his skin on the neck and a bit inside the throat where he was "fried" the most.

So this is little update.... Here in Slovenia there's still no sign of spring... we have snow and it looks like spring won't come that fast... very weird for this time of season.

Take care all of you - you're in my prayers and thoughts!

V.

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Vanessa,

Its time to adapt motto, don't worry till there is something to worry about. So much easier to say than do, I know. A cancer ENT can feel things the size of a flea and tests are known to sometimes have false positives. Your Dads neck, surgery or not, is changing everyday do to radiation, its harder to see at this level of recovery, but as time goes on you'll be less affected by a lot of this and immediately think rad scarring.

If there was a serious concern, being your Dad just went through treatment, your doc would be on top of it. So celebrate his NED report and rest knowing the ultrasound will tell you just what she said today, not there!

God Bless,

Rachel

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

First off Congratulations on the CT, I'm so happy for you and your dad, and your mom too!
Did your dad have a PET scan too or just the CT? Just wondering really.
I too had a few hot spots on my first scans. I honestly think if anything that it's only hot spots. With all those rads in that area I don't think anything would still be growing. Rads causes so much swelling that can take up to a year to go down. I'm 9 months out and I see my ENT/surgeon monthly and as of last week I was still showing signs of swelling.
As for surgery, even in neck dissections, care must be taken around the arteries. But honestly you are getting way ahead of yourselves and your dad is so optimistic that you and your mom really need to join him in that. I don't think it's good for him for you to show him you are worried about any of this. Think positive that the treatment worked and know that many many many of us have had hot spots on our first scans.
Just take a deep breath and believe!
Have a great day and hopefully spring is right around the corner for you :-)
Billie

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

It is so wonderful when there is always somebody answering when you need to share either good or bad news or just update of something. Thank you!!

Well, yes, I'm trying to think positive. Mainly I was a bit angry yesterday, because he had only doctor check-up and she sceduled him for ultrasound on next Wednesday.. Couldn't they just scedule both things on the same day?? We had to traver 130 km one way just be there for half an hour. And we have good news, but still not completely reasuring, because ultrasound will give the right answer. They will do a needle biopsy if needed (if ultrasound shows something "active" on that node). So we have to go again next week. It's a bit stressful.

But I hope there's nothing and he will get clean report. The doctor was optimistic.

Billie, he had CT with contrast (of head, neck and lungs) on January 29th. At that point he was 4,5 months out of chemo/rads. They did not do CT sooner because his throat and neck were still very swollen. He was hit hard, his side effects were really bad. But then, by the end of January he was better - still some skin dammage and sore throat. Still quite some pain. CT showed everything clean and clear with some post radiation swelling. Only one node showed up as "hot". So now two months after this CT the doctor said she couldn't feel it anymore or see anything. So let's hope the ultrasound will show the same.

Duggie88's picture
Duggie88
Posts: 539
Joined: Feb 2010

Vanessa

I agree with Rachel. I had the same issue and my surgeon and radiologist  both stated it was from the radiation. Sit back and celebrate the good news and after the MRI you will have to celebrate some more.

Enjoy today it will be your last crack at it until tomorrow

      Jeff

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

WooHoo..., you, your father and family are in my thoughts and prayers.... Hoping it keeps getting better and better...

JG

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Vanessa

I hope the 3 of you can stay focused on the good news and don't worry about the "maybes".... a scan so soon after treatment often shows hot spots.

So let's not worry about that for now.

Sounds like dad is getting stronger ever day...and look how well he is eating already. 

That is HUGE !  Tell him to keep up the good work.

 

katenorwood
Posts: 1829
Joined: May 2012

Vanessa,

It is so good to hear from you, and WONDERFUL to hear your Father is doing so well !  It sounds like his onc's are staying on top of any issues that may arise.  I agree w/the above posts.  Relax and tell Dad and Mom we say hello, and sending warm thoughts and prayers their direction !  Katie

phrannie51's picture
phrannie51
Posts: 3730
Joined: Mar 2012

That's the name I give to those little tiny negative thoughts that want to just poke you here and there.....the "all clear" is pretty much in the bag, but that one little niggler is still hanging giving you a poke to keep the wonderful news edgy.  I truly believe that the ultra sound is going to show that this activity is nothing but left over radiation....a scared node.....

So celebrate the good news, sweetie.....don't let a little niggler wreck the main news.  99.9% of us have something left over from the radiaiton....this is your dad's version of "left overs".

Hugs.

p

 

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

Be sure and tell mom and dad hello from Idaho :)

My very first PET scan after my tx showed a little semi-hot spot just like your dad's ....they felt it was just radiation related, and the next scan proved that to be true another 3 months after that.  Being just 6 months out I'm sure he can still have plenty of "heat" show up on any scan....and like I said above, you dad is one tough guy (anyone who can go thru what he did and still eat by mouth, I'm in awe of that) :)

Hang in there ...you know I whispered a prayer all will be well (and your on my daily prayer list as well) ....

Big hugs on my end to you all...

Tim

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

... for your kind replies, warm words... I keep telling my parents how wonderful people you all are and there is no way we would get thru this without you! All those months were so much easier because I knew I can find out everything here.. You're like my second family across the ocean Wink.

I'll keep you updated!

 

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