New here, hello :-)

Welcome
Hi Roger. I'm with you on the Google searches - I scared myself.

We have had quite a few "unknown primary" survivors here - emphasis on "survivors".

I was diagnosed almost two years ago - stage IV base of tongue, 2 lymph nodes involved. I did induction chemo with cisplatin, taxotere and 5FU, then radiation with carboplatin. It was our hope that the chemo and rads would take care of all the cancer, and dissection would not be needed. All my tumors responded to the initial chemo. Chemo-radiation finished off my primary tumor and what was a huge lymph node. One lymph noded rebounded, so I had to have the dissection. I don't know what the percentages are here, but it seems a lot of people do not need the dissection.

Like you - I wanted to start treatment the moment I knew I had cancer - wanted immediate surgery. Very sorry you find yourself needing to be on the other end of the caregiving now - please remember to let people care for you if they want to - not do everything for you, but help out here and there.

Love the pic of you and your daughter.

Glad you found this site - the people here got me through treatment, I swear.

I can't recall the name of it, but there is a really good Canadian website that has "live" time with cancer pros. I'll try to contact a person I "know" who visits the site.

Welcome, Roger
to a place you hoped you’d never be. But now that you’re here, there’s no place better.

I was where you are just one year ago. The majority of us here seem to have had just about what you have though there are many BOT and NPG and other variations as well as you have seen. I was also SCC and HPV+ and the cancer that started in the tonsil had made the hop to a lymph node and it was this lump, not the tonsil, that made me check it out. I had the tonsillectomy and then, a few weeks later, started the rads and chemo. The reason they gave for doing this before thinking of going in for the lymph node was that they worried both about spreading and not getting everything in the operation. They felt it was better to try to zap everything while it was in place and then later, if necessary, go in and clean up. We asked questions but ultimately agreed with their greater knowledge and experience. I have no complaints. Ultimately, two months after treatment, they did a neck dissection and cleaned it all out but by then there was nothing but dead tissue.

That was seven months ago and I am pretty confident that we were completely successful. So, my advice is, listen and ask questions and make them explain their reasons but, in the end, go with the docs who have been successful. Of course, I was at Georgetown, the only CCC in Washington, DC, so I was pretty confident.

Beyond that, I always say that you are in for some rough months. If rads and chemo at the same time, perhaps it will be less time but more intense. If first one and then the other, perhaps less intense but tough for longer. If you are lucky, by about the holidays you will be done with treatment and beginning recovery. You will probably still feel sick and fatigued but you will no longer be getting worse each day. Everyone is different in how deeply they go down and how quickly, and certainly in how lucky they are on the rebound, but I think most will agree with the “few months of he**” assessment.

Nevertheless, the good thing is that you will recover. What you have is quite treatable/curable if caught early and treated well. You should hold onto this confidence throughout even as you spend day after day with more coming up your throat than going down it. I hope I can speak for most everyone here that the long-term effects are manageable, if not a breeze, and so much better than the alternative.

Let us help you through this. That is what the others here did for me. Also, your caregiver should go on the Caregiver board (down the bottom of the list). It is a great place for advice and to vent. This board maybe saved my life and that one saved my wife’s sanity. Doug

Hi Roger.
I found a swollen lymph node on my left side back in october of 2008. By December of 'o8, they were following up CT Scans with a PET Scan looking for my primary. Meanwhile, the lump was getting huge. It went from a swollen node to the size of a large lemon, rather quickly. I had a neck dissection in January the day after they did 3 exploratories looking for the primary. They never found it. I was stage four.

I had a PEG Tube placed in March and then I started radiation, but no chemo, on 4/6/09 and finished my 30 radiation treatments on 5/15/09.

osmotar said:

Welcome
As a newcomer myself, since June/July 2011, you will find this a great place to ask questions, and even vent if need be. A true wealth of knowledge.

Linda

Hi Roger
Nice to meet you but sorry you have to be here! I love the pic of you and your daughter.
I found a swollen lymph node on my left neck a year and a half ago. I was dx SCC unknown primary and had left neck dissection and tonsillectomy. The primary was not found, 40 nodes removed and only the one tested positive with no extracapsular spread. I had no rads/chemo. I am clear and I know that I have been very blessed. Sometimes the primary is unknown because it ain't there.
The key is that you find a doc that you trust and follow the program with the right attitude knowing that you are going to be fine.

nwasen said:

new here
Welcome to this wonderful site:
web is scary place to go. I had one sleepless night after reading the horrific blog of a woman who had everything go wrong that possibly could and never read another one. I wish I had found this place when I was going thru treatment.
I did not have cancer of the tonsils but did have stage 4 of the tongue and 3 lymph nodes. 35 radiation treatments, 7 chemo and no surgery. I was diagnosed in Sept of 2010 and started treatment the 3rd week in Oct. I know the waiting was the hardest part (insert Tom Petty here).....I was done with treatment the week before Xmas and to be honest felt bad for a few months. I had a PEG tube put in as I lost alot of weight very quickly. But now here it is Sept. and after two trips back to the hospital, one PET and the feeding tube gone: I eat almost everything I want (with the help of alot of water) and so far no evidence of cancer.
The beast can be beaten. Keep a good head and know you have lots of support and those with alot more knowledge than me on here to help you through the difficult days.
Peace
Nancy aka toughcookie

Roger
Also had a G-tube. Was not much of a negative to have, physically, and oh what a blessing.


You'll be okay, Roger. We are all proof that what you got can be beat, and life post-tx is good. I'm NPC, a 28-month Survivor, and returned to work a month after my last rad. The one big thing to always keep in mind is the Positive of knowing you are gonna survive this. Being told you have C at first hits you like it's the end, but that's not even in play. This is 2011, and this C is survived, and quite well. Keep us informed on how it's going.

Believe

kcass

Hello Roger
My husband was diagnosed in May with stage 4 Base of tongue with two lymp nodes involved. The radiation shrunk the lymph nodes quickly. ENT says no surgery unless cancer cells still in lymph after treatment. He had 2 rounds of cisplatin, 3 erbitox concurent with 40 rads. 4 weeks out from treatment. Check up next week.

Welcome to the group.

Blessings
Debbie

P.S. Beautiful little girl.

Lymph shrinkage
15 year survivor and yes the rads and/or chemo (I had bot at the same time) zapped my lymph to the point I did not require any surgery.

Good luck on the fight to come.

Good bunch of folks here with a ton of knowledge and experience.

Denny

Newbie
Hello, Roger. I am also a Roger. I am sorry to hear of your diagnosis but you are fortunate to be in communication with a whole lot of very good people. There are lots of people on this site who have gone through many different problems so there is a wealth of experience here. Also, there is a huge amount of support here as well and it has certainly helped me when I have been hitting bottom. So, ask questions, rant, complain, offer help yourself, or whatever as this is the place to do it. I wish you success in your journey to defeat the beast.

Roger

RogerRN43 said:

Small update Sept26/11
I just came back and read all the comments, thank you everyone so much for responding.

I had a L tonsillectomy last Thurs, 4 days postop now, multiple endoscopies found no spots anywhere (I already had contrast CT from head to chest that found nothing a week earlier, except the lymph of course). The tonsil results should be back any day now. I also had a PEG inserted; finally today I am off Tyl3s and I can walk without being hunched guarding my stomach, I'm eating soft foods too. Hope I won't need the PEG, glad it's there if I do. I flush it daily and change the dressing with alcohol free chlorhexidine swabs followed by a dry dressing/medipore tape, usually after a shower. I'll take out the stitches tomorrow as ordered by my ENT.
My ENT thinks it's viral related and mentioned cure, I'm trying to be optimistic. He's away this week and I'm to call my Radiology Oncologist Sept28. Chemo was mentioned in the mix by my ENT, and neck dissection only if necessary when all said and done.
I see my RO does research on IMRT and quality of life, I hope side effects are minimal.

The road is going to be tough, but I'm starting to see it laid out in front of me.

I bookmarked the superthread, thanks sb22 and all those that contributed there! Those tips will surely be helpful!

SuperThread
Glad you are making headway...stay positive you can beat it...

You might have to re-bookmark the SuperThread if Dawn has to repost it again...

She likes to keep it clean, so all that she has to do is bump it weekly, sending it back to the top.

But unfortunately someone didn't realize that and posted to it...so more than likely when you re-posts it again, the post number will change from the 224007 it currently is...

When she is the only one that posts to it, she can just edit and re-bump it. It doesn't work that way once someone else posts to it.

Best,
John