Well got the results of my pet scan today. Everything looked great in the neck, tonsil and tongue area! The only concern they have is 2 lymph nodes one near the esophagus and the other in the lower lobe of the lung. They feel it could still be from the radiation and have me scheduled for another pet scan in 3 months. The nodes aren’t a size for concern according to the doctor. Wondering if I should wait on the next scan or get the biopsy?? Any thoughts? Thanks for listening.
Gordon

Posted on April 26, 2012 at 11:20:43 AM by Gordon (PET SCAN, 8 comments, 347 views)

I guess I feel like if you trust the doctor I would do what he or she says. I have been very fortunate to have really good doctors that I trust emphatically. If my doctors aren’t concerned then I just have to trust that they know best. On the other hand, nothing is as disconcerting as not knowing. Talk to them and ask them. If you aren’t comfortable, ask for another opinion. It couldn’t hurt.

God bless

Posted on April 26, 2012 at 11:56:11 AM by Brian

Thanks Brian…what a road this has been. Glad to hear your fishing again!

Posted on April 27, 2012 at 10:37:33 AM by Gordon

I agree with Brian, depends o how you trust. If you feel the least bit worried then I say go for a biopsy. You don’t need any more stress

Posted on April 26, 2012 at 12:42:33 PM by Private User

I think because I couldn’t get a 100% assuredly, and you never can, I would go with the biopsy. I would be worrying the whole time anyway till the next scan. I know we are all different and come from different experiences our choices will also be different. I am sure you will choose the best choice for you!

Posted on April 26, 2012 at 12:50:59 PM by Private User

Maybe consult with your other doctors to see if all are in agreement..Oncologist, Radiation Oncologist and ENT, and be guided by that. You can get a 2nd opinion from an unrelated doctor. Radiation continues to work 6 weeks after treatment, nd often times who false positives. I had mine at 5 months abd showed two suspicions in he lymph nodes. Had an MRI, and ode same. Had a FNB next, which showed positive for cancer, so I had a RND, which biopsy showed the lymph nodes to be negative, although, unexpectingly, Cancer was found in my neck muscle, which was only removed by chance by he surgeon, and did not show on any of he previous tests cause it was microscopic. The tests..PET, CT, MRI, and FNB are not 100
percent accurate, 70-90 percent range, I think, except for the direct biopsy, but each offer or shed light in a different way.

I have to add, since I can’t back space that my oncologist wanted to watch and see after the PET and MRI, but my ENT said we have to take the lymph nodes out for a several reasons…the test came back suspicious, there was already Cancer, alley had chemo and radiation, there and now a new tumor and that I was fighting this cancer for two years already, so
I had the surgery.

I hope this helps, and good luck with everything.

Posted on April 26, 2012 at 12:51:48 PM by Paul

Sorry for the errors. I’m beginning to hate iPad lol. It changes my words and had to write this twice.

Posted on April 26, 2012 at 12:54:49 PM by Paul

Thanks Paul for all the information. I’m still trying to decide whats best. I’ll keep you posted.

Posted on April 27, 2012 at 10:39:30 AM by Gordon

wow that’s some question. i am a little afraid of a biopsy. could that let it spread? 3 months isn’t long and if they are small, I think I would wait but its such a personal thing. I’ve been playing a waiting game with a small mass on my kidney. active surveillance they call it. I’m glad everything else looked great :)

Posted on April 26, 2012 at 1:17:13 PM by Laurie

Hi Laurie…thats what my wife and I were a little afraid of. I’m not wanting it to spread. I’m waiting for my RAD dr to call me. I trust her. I’ll keep you posted. God Bless

Posted on April 27, 2012 at 10:41:21 AM by Gordon

good luck, you’re in my prayers.

Posted on April 27, 2012 at 11:34:43 AM by Laurie

I waited when my PET came back showing ‘something’. I hoped it was false due to swalling or something. But you do what your gut tells you to do!

Posted on April 26, 2012 at 6:28:08 PM by Sandyjo

I think right now thats the only thing you can do. I’m just not sure what its telling me, but I will figure it out. Thank you for the advice. Hope your doing well.

Posted on April 27, 2012 at 10:43:15 AM by Gordon

Thank you all so much for your words of advice. I’m consulting with my RAD doctor because she is who I feel the most connected to. I will let you all know what I decide to do. Staying positive!

Posted on April 27, 2012 at 10:35:56 AM by Gordon

I agree with Brian.If your DR is a cancer specialist with a good Cancer Center,they see this all the time and have a good feel for what’s going on.

Posted on April 28, 2012 at 5:38:05 AM by Tom D

Recovery

Hello Everyone, Hope all is well.. My 2nd week has gone by since my last Radiation treatment and I am getting better slowly. My neck continues to heal but looks burnt (3rd degree)and with the radiation and Aquafor creme that is helping alot. I do see signs of healing just taking it’s sweet time. I never knew the body could produce that much Phlem in my life. I notice it is cutting down but my god, there is alot. Getting better day by day and Time does heal. Hope everyone is doing well as expected and keep your spirts up, there is light at the end if the tunnel.. My best to you all, Gordon

Posted on January 21, 2012 at 6:59:24 AM by Gordon (Recovery, 9 comments, 1027 views)

Good to hear that Gordon. It does take time. Best wishes for the coming weeks..Paul

Posted on January 21, 2012 at 7:15:48 AM by Paul

The worst is over now and it is onwards and upwards from now on. I agree about the phlegm. I must have produced my bodyweight in the stuff. Its vile isnt it? The recovery process is one where you acknowledge the successes and get past the failures. Dont expect too much of yourself and have patience. You have a very positive attitude and that will help you through.

Good luck with your continuing improving health!

Posted on January 21, 2012 at 7:50:06 AM by Helen

You are an inspiration, keep going and God bless. Wishing you a speedy recovery, I can understand healing from burns.

Posted on January 21, 2012 at 8:20:25 AM by Ebonyjwriter

Great News.I am about 2 month’s ahead in my healing and i can assure you it will get better.

Posted on January 21, 2012 at 9:43:17 AM by Tom D

Good to hear from you. I am glad to hear you are improving. Yea, phlem is yukky. I was so so glad when it lessened.
Keep your neck and jaw moving. I did not realize how tight mine were until recently. I thought I had them moving. Little did I know. I learned that the tight muscles can restrict swallowing.

Posted on January 21, 2012 at 12:05:33 PM by Sandyjo

Every day of getting better and stronger is wonderful! You are right, there is light and I am glad you can see it.
Keep improving!

Posted on January 21, 2012 at 1:04:49 PM by Private User

Good to hear it is slowly easing up for you! I still say the body can endure an amazin amount of crap…. but the “Rope Mucus” is one of the worst parts o having radiation on the throat! The more you can eat by mouth the quicker the phlem will go away! I know even now with my issues and still being on the tube, when I am sick ( the last 2 weeks) and I can’y eat the phlem starts to thicken again!EUsing the muscles to eat really does help. Hugs Val

Posted on January 22, 2012 at 3:47:50 AM by Private User

Thats Great Gordon. I notice you had Erbitux. They only did 7 treatments? I think I have to have 11. I wonder why. I am in a trial which may have something to do with it. How did you tollerate the Erbitux?

Posted on January 23, 2012 at 8:30:20 AM by Brian

Good Morning Brian and thanks for the feedback. I really did not see any negative side effects from the Erbitix, other than a lettle tired at the end of each session. My Oncologist only set me up for 7 (i hope that was enough)and she felt that was good.I think with having the radiation with the Erbitux I might have really not known which side effect was from the raiation and which was from the Erbitux.To answer your question, I went thru the Erbitux I think pretty good, I was battling the Raiation end more and those were a little tough and still play a part in my daily fights. BUT I am getting better everyday and there is light at the end of the tunnel. Brian I wish you continued success in your journey and please feel free to ask me ANYTHING that I might be able to assist you in. Take care and have a good day.. My Best, Gordon

Posted on January 23, 2012 at 8:47:37 AM by Gordon

Did you get the rash I keep hearing about? How long does that last? Any problems from that?

Posted on January 23, 2012 at 12:02:36 PM by Brian

Good Evening Brian, I did get some ACNE and the face and on top of the head, little sores. The neck rash that you may have heard of was from the radiation, at least for me. From the Erbitux I only got the acne on the face (feels like 15 again) and on top of the head, some were painful, again everyone is different. The rash was for me associated to the radiation and during treatment I did not have that much, BUT during the recovery time it really broke out and now I am 2 weeks post radiation and it is pretty bad. With the radiation creme and Aqua 4 creme it is controlable. I must repeat myself again and say everyone is different in how it effects each person. The Radiation techs were VERY HELPFUL in some of the care for my neck and the Chemo techs too, ask them all you want they are very willing to assist. Thanks for the questions brian, I hope you are doing well, anything else comes to mind I will be hereto help/assist as needed.. My motto,”NO ONE FIGHTS ALONE” Good Luck and take care,, MY BEST TO YOU… Gordon

Posted on January 23, 2012 at 9:24:13 PM by Gordon

Posted on January 23, 2012 at 9:24:39 PM by Gordon

Hi Gordon,
Near the end of treatment, my neck completely peeled away over a couple of weeks in dark brown patches that could be gently rubbed off with a warm wet towel. It’s all healed now, nice and new skin, nobody would have thought it was originally burnt badly. At the time, my doc gave me a lotion mix of xylocaine and polysporin that really helped with the pain/sensitivity.

My mucus was constant, I was always coughing or hacking. My nose also got stuffed up at night. Both resolved and other than the sensation of dry mouth, my oral cavity and throat feel pretty normal now.

Recovery time is different for everyone but know it will pass and you will feel better, hopefully sooner than later.
Roger

Posted on January 23, 2012 at 3:39:43 PM by Private User

Good Evening Roger and thanks for the feedback. I am pretty much there now, neck peeling and not looking too good. I have no real pain, I use the radiation creme and Aqua 4. Both of them have helped alot. I do feel my phlem is cutting down but I thought by now it would be less, but I am working thru it and i never knew the body could produce soooo much plhem in a short time. My nose does run too but if this is the price to pay for recovery I am game. I hope you are doing good and wish you continued sucess. Good Luck and thanks again for the feedback. MY BEST TO YOU< Gordon

Posted on January 23, 2012 at 9:30:36 PM by Gordon