Hi everyone. After about a week of ear-ache and a lump in my neck I went to my GP 2 days ago, got a referral for a CT scan, met with my ENT guy, and got the preliminary diagnosis you see in my signature block. From the CT scan the tumor was sized at about 2cm. The doc took biopsy material and scheduled me to see a surgeon next Friday April 3. I should get confirmation then and start down the road towards a treatment plan.
I came across this site and forum this morning while seeking out information about a subject for which I am profoundly ignorant. I browsed around the forums a little, and you all seem like a great bunch of folks. I am hoping to learn a lot from you to help me through what lies ahead. Along the way, and as I learn more, I also hope to help others that face similar problems. It's really comforting to know that support is there. Thanks all.
Hi, PJE
Welcome to OCF Site! As you can see from my signature, my husband's diagnosis was very similar. It's great that your GP did the referral without a lot of messing around with antibiotics - the quicker the diagnosis the better! It sounds like the word is getting out.
Will you be treated at Carbone? That is a CCC - should be top flight for treatment.
Again, welcome.
Maria
HI PJE
welcome to the forum I too had tonsil cancer, sorry you have to be here but glad you found us. Any questions you have will be answered by people who have been down this road and have lots of experience and tips to help you through. I had the ear ache , sore throat and tongue and severe trismus I know know all to be classic signs but my GP wouldn't refer me to an ENT specialist for a further 8 weeks and 2 courses of anti biotics , nothing sinister they said you have no risk factors....,! So I too am glad they have moved things more swiftly in your case. The treatment is brutal no getting away from that but some seem to manage better than others , however it's all doable . I'm 15 months on and doing good.
Thinking of you and wishing you well, keep us posted when you feel able to.
Love Di x
Welcome to OCF! Im sorry you have the need to be here but you have found the very best site for info and support. We are fellow patients, survivors and caregivers who have been thru this and know the ins and outs of this dreadful disease.
Thank you for the good wishes Maria. I expect to be going to the CCC, yes. My ENT guy said the surgeon visit was just the first top. Then on to radiology, chemo, emotional, and so forth. As I read others' stories here I am feeling really lucky to be where I am and with what looks like an early diagnosis.
Welcome to OCF! So glad you landed here in time to hook up with folks who have a ton of experience to help you answer questions and offer suggestions at the right time. None of us are doctors or know anything about your specific case, so rely on your team to guide you along that path. We can offer lots of practical and first hand advice on many of the events you will likely experience as you begin treatment planning all the way through treatment and recovery phases.
Hi, you are ahead of the game! I'm sorry about your diagnosis but you are one step closer to getting past this and moving on with the rest of your life.
You will most likely discover that you are braver and stronger than you ever imagined! Blessings to you on this journey.
HI You will find a great support group here, make sure to get to a CCC as soon as you can and listen to them. Be brave and strong thru this war you are in. Semper-Fi Bob
Welcome - there area a lot of people here who've had a similar diagnosis... ask away!
hugs.
There are a number of us that have been in your shoes. You are not alone.
The HPV+ is a very good indicator of a successful outcome for you.
The journey is tough, but please ask away.
Thanks so much to all of you for the welcome. Just letting you know that I got the biopsy results back from the ENT office today, and they confirm the diagnosis that's now in my profile. From the reading I've done over the past 2 days here and elsewhere, every word of that is good news for me (except carcinoma, of course). Next step is staging, which I guess we'll get a start on when I see the surgeon day after tomorrow.
Meanwhile, I've been reading a lot of the posts here on the forum of other cases. I am humbled to be among such strong and supportive folks. Reading all this has lifted my spirits and given me the confidence to know I can get through this. Thanks so much to all of you.
Hi Peter
Welcome to OCF.
Good luck in your battle. Be strong along the way and you will do fine. There is always someone here who has been through what ever hurdles you may cross. Just ask and we all will answer.
Best Wishes
Heidi
Hi, Peter
Remember to bring a list of questions, and write down the answers! You sound really together but brain freeze in the surgeon's office is always a possibility
Maria
Welcome Peter , sorry you have to be here but you will find amazing support and tons of help and advice from people who have been there before you .
I check in most days and it really does give you comfort and a feeling of belonging . Personally for me I've been speaking recently to people who don't live far from me and that too is a massive help and also gives me a chance to support and give back a little .
We are all here for you.
😃 Di
Maria, that was really good advice to write down questions/answers. I'm normally a pretty steady person, but I was so worked up before the meeting with the oncology surgeon yesterday I had to ask my wife Deb to drive us there. The written question list kept me on track and focused.
Well, it was a good news, bad news, good news visit. First of all, the surgeon really impressed us. He is an assistant professor at U of Wisconsin medical school, trained at Harvard (which I understand to be a reasonably good college...), and more than ten years experience treating this kind of stuff. We have a lot of confidence in him.
The bad news is the cancer has spread to multiple lymph nodes. Hence the staging info that I've added to my profile below. The final good news is the surgeon thinks this is very amenable to TORS surgery, on which he is a certified expert. The reading I've done had me hoping for exactly this. So we expect the most likely treatment to be a tonsillectomy via TORS, with a neck resection to get at the lymph nodes, followed by radiation therapy to kill off those pesky stray cells that might be hanging out.
Of course there's more to do here. I have a PET scan scheduled for Monday (Apr 6) afternoon, and a consult with a radiation oncologist on Wednesday morning. The Carbone CCC cancer board meets on Wednesday, so it's conceivable we could have a treatment approach confirmed next week at the start of treatments shortly thereafter.
Mentally, I think I'm doing OK - although getting back to sleep in the middle of the night has been hard. I accepted a prescription for Escitalopram (Lexapro) 10mg against the possibility of depression - can't hurt, right? Daytimes are pretty good for me - the stories I've read here have been a real help.
Thanks again for your kind words of support. I'll check back here often, and post updates as I get them.
Go Wisconsin Badgers against Kentucky tonight in the NCAA semifinals!
Gosh, I forgot to ask what your opinions are of the treatment plan I'm favoring. Does anyone have experience pro/con? Thanks in advance.
I didn't have this type surgery, but It's pretty common now having a tonsillectomy with TORS, with HPV, at places that are experienced, and have equipment to do them, as well as the patient qualifications, followed by a neck dissection, then radiation, and chemo possibly, based upon the pathology of surgery. I'm not familiar with the cancer center, but see they have a tumor board, and most likely have a multi team approach. I've seen reports with better outcome, shorter hospital stays, deescalation of radiation, reduced peg need and duration with this type surgery first, followed by radiation. All surgeries have risks. Good luck
Hi, Peter
It sounds like you are in good hands for your treatment. They were just beginning to do the TORS surgery when my husband had his treatment and he did not have access to it. His doctors did the best they could at the time to reduce the debilitating effects - which was to replace the the cytotoxic plantinum-based chemo with the Cetuximab. He still had a hefty dose of radiation - 72 grays.
There are some recent study results out that show good results for the TORS / slightly reduced radiation combination. You could ask your doctor about those as compared to the radiation / cisplatin protocol. I'd also ask about the radiation schedule - accerated may yield some advantage, but is harder for the institution to accomodate.
But - just a word about numbers (and also to Deb). When you are stressed, your ability to do math in your head goes to heck in a handbasket. The doctors on the tumour board will be professionaly weighing your individual characteristics with the study and their own personal results when they discuss your case and make the recommendation. Unfortunately, we need at time machine to take us into the future to determine what really is optimal. Our doctor friends emphasized that it is important that you trust your ENT and surgeon. It sounds like you have that, so you should be able to move forward.
Maria
Condolences on the Wisconsin Badgers, was a great game right till the end.
From personal experience I have to say I was impressed with the TORS surgery. The process, recovery, and now at just over 3 years glad I made that decision. lucky it was available for me.
Always good to get multiple opinions...
Quick update with some good news:
The clinic here at U of Wisconsin Carbone CCC is amazing. They got me into a full-body PET scan yesterday afternoon. My surgeon called at the end of the day to answer some questions I had phoned in, and told me the scan results came back with no distant metastases. So I'm happy to add the "M0" to my diagnosis line. And this preserves the TORS surgery option, which is looking better to me all the time. I see the RO tomorrow for another opinion, and to consult about follow-up treatment for after the surgery. With any luck we'll have a treatment plan decided by the end of the week, with a possible start date as early as next week. We can't move too quickly for my tastes.
By the way, they gave me some Valium (10mg) to relax for the procedure. I have to say that was pretty good stuff and I highly recommend it. For the first time in over two weeks I wasn't
worried about anything. At least until the final four minutes of last night's Duke victory over our beloved Badgers in the NCAA finals. :o(
Glad to see your PET results ... sorry about the Badgers.
Maria
Another update - and Decision Time.
Hi everyone. I met today with the RO. He predicted equal chances of success with surgery followed by radiation, or a combination of radiation and chemotherapy (cisplatin). For the post-surgery follow-up he would administer 60 "units", OR 70 without surgery first.
The RO is worried about the possibility (from the CT scan) that cancer cells may have escaped one of the infected lymph nodes. In that case he would add cisplatin to the radiation follow-up. For that reason I think he favors just going with radiation and chemo (to avoid having to use all 3 forms of treatment and suffer the side effects of all of them). But the only way to know if chemo will be required though is to have surgery and get the pathology report. So with surgery there are 2 certain and 3 possible treatments, and with RAD there are just the two.
I still feel like TORS surgery is the best way to go, and we decided on that during the consult. In the event that there have been escaped cells, they�ll do the cisplatin at a relatively low dose (40mg) 1x/week for the entire 6 week radiation treatment. This seems to be the advice from others here in the forums who've had it both "big bag" and metered out more gradually - at least in terms of side effects.
Radiation To set up for this will take about 4 to 6 weeks after surgery, including a week to plan the precise treatment plan. I am figuring that surgery will happen sometime between April 13 and April 24, this would put the start of RAD in late May, with completion around end of June or first week of July.
My RO is a fan of the PEG tube insertion, particularly if we have to involve chemo (he says the last 2 weeks of RAD are pretty rough and very hard to get things down). My surgeon is not so much a fan, because he thinks there are better swallowing outcomes if patients are forced to do that during treatment. I guess I�ll leave the PEG decision until after surgery when we get the pathology report. I�m inclined to forego the tube unless chemo is involved.
On the mental side, the more I learn the better I feel. Part of that is that every doc I�ve seen so far has used the word �cure�. The surgeon said 90%, and the RO said 80% today. Why not me then? And the more I learn, the more confidence I have that although it won�t be pretty, I can do this. It is sure going to be an interesting summer.
So -- what are your reactions to above, particularly with respect to the surgery/RAD approach, use of PEG, and what to expect with side effect symptoms, durations, and long term prospects? I have read a *lot* of this already on the site. Guess I'm just looking for a little reassurance. And thanks.
All that I have read suggests that surgery is the better option. TORS surgery is literally cutting edge, isn't it? And it looks as if that type of surgery will require much less hospital time. With luck you might not have to have chemo which I understand intensifies the effects of the radiation.
But all of this is doable.
I was never offered a PEG but used a nasogastric tube until my mouth healed. Could that be a middle way? (Other people here are very knowledgeable about the PEG.)
Having a well thought out plan of action is very reassuring for cancer patients and it sounds as if your doctors are onto it:)
Best wishes.
Hi again. Things have moved along pretty nicely and we have surgery scheduled. So I figured it's time to move over to the "Currently in Treatment" forum. I've put the whole plan as I know it into a
new post there.
You guys have been great. Thanks much for all your encouragement. I feel prepared.
Welcome. It was just last year my stage 2 oral cancer progressed from 2 to stage 4a and turned into oral neck cancer. It's been almost an year and both scans been clear. I have no signs of cancer in my mouth or in my neck. It's been a rough year but with my faith in Jesus and good hospital care. I am very much alive and doing well.
Btw... I expect to live to be old! Very old. And so should you! The way you think and act will determine a lot.
Warm welcome!
Kimberly
If you have any questions... Please ask. I'll be happy to help you!