New member, husband with tonsil cancer - post-surgery and protons, possible lung spots

boolean

Hi everyone, 

It is strange to be here, in this forum, after my husband has already gone 8 months or so into the process. He was diagnosed with tonsil cancer in August 2015: T3-4, HPV+18. I appreciate your many stories. I'm hoping for guidance. I didn't think I'd need to post on a forum, thinking my 46yr old husband was in the clear after robotic surgery at Penn, flap installed from his left arm, and then proton therapy. The prognosis sounded amazing, less than 2-10% reoccurrence, we were told. All we had to do was get through the surgical recovery and the proton therapy for 6 weeks, and then smooth sailing, right? Maybe not.

today, the PETscan came back with two possible spots in the lower left lung. What happens now? I've read horrible things, and I've read some hopeful things. I have no idea what to think. All I know is that I don't want my husband to go through this again, and to see my little boys go through this again.

He is strong, having physical therapy for trismus and lymphodema. The trismus, or lockjaw, is really bad, but he hopes a stretching device will help. That seems the least of our worries now. His treatment timeline is in my profile, if it helps. Any advice is much appreciated before we see the ENT at Penn to discuss these new, scary results.

 

 

tomb247

Hello Boolean

Welcome to the group no one wanted to be in. You habve come to a great place with many different stories and a bunch of experience. I was diagnosed with Stage 3 SCC Base of Tounge/Tonsil. I went through 30 treatments IMRT 7 fields and am a year out. Did not have surgery (No nodes involved or chemo).

Since your husband had some more extensive procedures done, I will defer to some of the others in the group but will give you a helpful link that I utilized.

I am attaching a link for a self lymphatic massage that your husband may or may not be using but helped me a bucnh. Performed 2 to 3 times daily as tolerated. Also had dialogue with the therapist.

https://www.youtube.com/watch?v=Q9FP6AHj9Eo

I hope you get the information you need.

Peace, Tom

boolean

tomb247 said:

Hello Boolean

Welcome to the group no one wanted to be in. You habve come to a great place with many different stories and a bunch of experience. I was diagnosed with Stage 3 SCC Base of Tounge/Tonsil. I went through 30 treatments IMRT 7 fields and am a year out. Did not have surgery (No nodes involved or chemo).

Since your husband had some more extensive procedures done, I will defer to some of the others in the group but will give you a helpful link that I utilized.

I am attaching a link for a self lymphatic massage that your husband may or may not be using but helped me a bucnh. Performed 2 to 3 times daily as tolerated. Also had dialogue with the therapist.

https://www.youtube.com/watch?v=Q9FP6AHj9Eo

I hope you get the information you need.

Peace, Tom

Rub a rub rub

Thanks, Tom, for the kind welcome! It's funny you mention the massage, because he was doing it at the exact moment I was reading your response. It helps a lot! Since doing the massage, wearing a head wrap, and wearing kinesio tape, his neck and jaw are really looking better. Much less puffy, and his neck mobility is greatly increased. It's amazing what a little massage can do. It loosened the tightness in his jaw and neck, which we had thought was scarring but learned from the pt was actually Lymphodema. This whole journey has been all about managing one complicated thing after another, that's for sure. He likes to tell people about how I would stuff gauze into his neck drain hole... What a crazy thing we have gone through, like so many of you. 

Hondo

Hi Boolean

After I finished my treatment for NPC I also lit up a few spots on the lungs, that’s been about 8 years ago. My doctor at MDA had me doing PET scans every 6 months just to keep an eye on everything: after a while it just went away but there is some scar tissue there left behind. I too was 46 when I came down with my first case of NPC, I am now 60 and retired and enjoying life every day. Please stick around and ask as many questions as you want.

 

PS: I am also a strong believer in the power of prayer

Tim

phrannie51

Hi boolean....and welcome....

Sorry to have to meet you here....but this is a great forum, very active, with smart, positive, compassionate....and humorous people. 

One of our main mottos is....."it ain't cancer till somebody says it is"....there are too many variables in the mix....PET scans light up everything....inflammation....infection....anything that has activity.  Did they say what the SUV values were of those two spots?  Anything under 3.0 is presumably not cancer....anything over 5.0 is considered possible cancer.  BUT, without a biopsy there isn't a real way to know.  The ENT will probably refer you to a pulmonary doc.....that's when you'll hear what a "lung expert" thinks. 

Good luck to you and your hubby....remember to breath!  We are always here if you have questions, need to vent....feel fearful....there is always someone who will answer your call.

p

wmc

Welcome to H&N group

Welcome to the group. Cancer with HPV+ does respond much better to chemo and radiation, than ones that don't have it. However is does come back more as well, is what I am seeing here. Not sure where you got your numbers, but lets hope for them. Having hot spots show in the lung happens and may be nothing as that has been the case many times. Remember it is not cancer until the doctor says it is. Keeping our fingery crossed.

Bill

swopoe

Hi boolean. Nice to meet you.

Hi boolean. Nice to meet you. As others have said, the spots may not be cancer. Please see what the docs say first. I hope they are just nothing. Please keep us posted. I will keep you, your husband and your family in my thoughts.

Barbaraek

What Phrannie said!

It aint's cancer until they say so. You are at a good facility so we'll cross our fingers and toes for you and your husband that those spots lighting up are post tx. inflammation or something along that line. It is a rough road to travel, but you will find some good traveling companions here on this message board. Also i would point out you can search old message threads by putting key words in the search bar. I think I read EVERY post written about mucositis and learned a lot. You are free to post any question, celebrate victories, and even whine or complain here - everyone needs a "safe" place to do that every once in a while. 

Glad the massage is helping to alleviate some of the stiffness, and hope that everything continuees to improve!

Barbara

 

the_wife

Barbaraek said:

What Phrannie said!

It aint's cancer until they say so. You are at a good facility so we'll cross our fingers and toes for you and your husband that those spots lighting up are post tx. inflammation or something along that line. It is a rough road to travel, but you will find some good traveling companions here on this message board. Also i would point out you can search old message threads by putting key words in the search bar. I think I read EVERY post written about mucositis and learned a lot. You are free to post any question, celebrate victories, and even whine or complain here - everyone needs a "safe" place to do that every once in a while. 

Glad the massage is helping to alleviate some of the stiffness, and hope that everything continuees to improve!

Barbara

 

Hi and welcome!

Congrats on joining the H&N thread! I didn't join until later in the process either because I just so darn busy and scared and soooo overwhelmed. 

My  hubby had HPV+ tonsil cancer, too, but no surgery - just chemoradiation. I'm sure with the way things look it's very stressful, but hang in there! We are here for you and like Barbara said, it sounds like you are in good hands. 

As the others have already said, feel free to come here often for support and advice, and don't be afraid to vent! This is a safe place for you as a caregiver to say whatever is on your mind. 

Take care of yourself!

 

MrsBD

Latecomer

Better late than never! I'm glad you found us and know you'll find the answers you need. I had two spots show up on my first post-treatment PET scan. Since they were small, the consensus was to watch for any changes in future scans. It's been almost 18 months since my last treatment and the spots have remained stable. I also had a spot that lit up in my throat and it also remains stable. It's most likely due to radiation changes or inflammation . So, there are reasons other than cancer that can cause suspicion. I'll keep you in my prayers. 

Duggie88

Boolean

I also went to Penn and saw Dr. Weinstein who creeated the robotic surgery for head and neck. Matter of fact the FDA approved it the day he performed my surgery at the base of my tongue (12/18/09). He didn't use it on me because he thought his chances of cutting it all out were with a full neck disection. Since I live 75 miles northwest of Philly they found a therapist locally who had training for lymphodema and I went there for 6 months (also for muscle therapy because of cutting them during surgery). I had 6 weeks of radiation down at the Perelman and a few months later an all clear PET Scan. Six years now amd all is well.

Sucks that after going through that ordeal and now two spots on a long. All I can say is stay positive and upbeat because it ain't cancer till they say so and if by chance it is he just has so more butt to kick. I know it's easier said then done but this is a great room to come in and yell and scream a bit and maybe punch a wall or two. Don't try this at home it cost to much money to fix a wall, in here it doesn't cost a thing because we all pitch in and try to patch things up.

The fight can be just as hard on the caregivers and family members especially the young ones stya positive stay strong.

      Jeff

boolean

Tentatively in the clear

hello, everyone. I want to thank everyone who commented and gave their personal experience with their journies. We visited the doctor at Penn (Weinstein, same as listed for another member), and he told us that my husband is still healing, and he's never seen a reoccurrence this soon. He really felt it was not cancer on the scans. Just in case, MRI and CT scans were ordered to follow up with the "thoracic guy". This past week, my husband visited with that doctor, only to be told, "Good news, you don't need to see me again." The spots on the lungs were considers to be inflammation, as well as the spot in the throat. He doesn't need anothe scan for two on this, followed by seeing Weinstein. 

What we learned: get all scans at the place you were originally treated. That is the first thing Weinstein said. The scan was originally done in a more convenient location, it ended up being a questionable result that added weeks of anxiety. Better to do the hour+ drive and get scans done at Penn. message received! 

wmc

boolean said:

Tentatively in the clear

hello, everyone. I want to thank everyone who commented and gave their personal experience with their journies. We visited the doctor at Penn (Weinstein, same as listed for another member), and he told us that my husband is still healing, and he's never seen a reoccurrence this soon. He really felt it was not cancer on the scans. Just in case, MRI and CT scans were ordered to follow up with the "thoracic guy". This past week, my husband visited with that doctor, only to be told, "Good news, you don't need to see me again." The spots on the lungs were considers to be inflammation, as well as the spot in the throat. He doesn't need anothe scan for two on this, followed by seeing Weinstein. 

What we learned: get all scans at the place you were originally treated. That is the first thing Weinstein said. The scan was originally done in a more convenient location, it ended up being a questionable result that added weeks of anxiety. Better to do the hour+ drive and get scans done at Penn. message received! 

All in all that does sound like good news.

Over the years I have seen many get false "hot sopts" with some on the scans. Many are scar tissue. What I doo is ask for a copy of the scan and they will get it in a day or two for me and it is on a DVD. Not only do I get to see the scan I get the report as well. I keep all my records and doctors and medical conditions with a list of all my meds on a thumb drive. When I have to go to doctors I take my laptop incase they don't want my thumb drive but I have the disc in my medical briefcase.

Thanks for the update:

Bill

the_wife

boolean said:

Tentatively in the clear

hello, everyone. I want to thank everyone who commented and gave their personal experience with their journies. We visited the doctor at Penn (Weinstein, same as listed for another member), and he told us that my husband is still healing, and he's never seen a reoccurrence this soon. He really felt it was not cancer on the scans. Just in case, MRI and CT scans were ordered to follow up with the "thoracic guy". This past week, my husband visited with that doctor, only to be told, "Good news, you don't need to see me again." The spots on the lungs were considers to be inflammation, as well as the spot in the throat. He doesn't need anothe scan for two on this, followed by seeing Weinstein. 

What we learned: get all scans at the place you were originally treated. That is the first thing Weinstein said. The scan was originally done in a more convenient location, it ended up being a questionable result that added weeks of anxiety. Better to do the hour+ drive and get scans done at Penn. message received! 

Awesome

That's great news!!! whooohoooo!!! 

rudy

boolean said:

Tentatively in the clear

hello, everyone. I want to thank everyone who commented and gave their personal experience with their journies. We visited the doctor at Penn (Weinstein, same as listed for another member), and he told us that my husband is still healing, and he's never seen a reoccurrence this soon. He really felt it was not cancer on the scans. Just in case, MRI and CT scans were ordered to follow up with the "thoracic guy". This past week, my husband visited with that doctor, only to be told, "Good news, you don't need to see me again." The spots on the lungs were considers to be inflammation, as well as the spot in the throat. He doesn't need anothe scan for two on this, followed by seeing Weinstein. 

What we learned: get all scans at the place you were originally treated. That is the first thing Weinstein said. The scan was originally done in a more convenient location, it ended up being a questionable result that added weeks of anxiety. Better to do the hour+ drive and get scans done at Penn. message received! 

Good news

I'm a scared newby to cancer Proton Therapy [neck] and having to be here alone, so any good news is greatly needed.