Hi guys,

My husband went into meet with the surgeon again today and to get the face-to face pathology report feedback.
Radiation is definitely being recommended because of Perineural Invasion and the Island Invasion style of the tumor.

I was scared to death in the appt. He said that after radiation there is a low chance of reoccurrence- 10-15%, but that another aggressive surgery will most certainly cause severe functional issues. (would more than likely need to remove half of my tongue and I could lose my jawbone.) However- assuming that they got all of the cancer out and I have a successful round of radiation- this will hopefully not be something I ever need to deal with again. The odds will be in my favor!!

A couple of questions for those of you who have been through this all.
1- This doctor is not big on scans- should I demand a scan? He says that the human eye and touch are the best indicators.
2- Is it normal that the doctor had not spoken with the pathologist in advance of our meeting with him? He was going to re-verify a few things with her and discuss. But it seemed obvious that he had not yet spoken to her. This may be standard- I don't know.
3-Should I seek a second opinion at this point? Is it a futile exercise at this point? Should I just go ahead with the radiation?

I just want this to be over and done with- I want to be ensured that I am giving myself the best possibility of long-term survival as we all do.

My husband is keen to get a second opinion before we meet with the RO here in NYC on the 14th.

Also- any opinions on where to go for a second opinion? Is MA the very best? Any opinions would be much appreciated - I guess through PM.

Thank you so much. In case you can't hear it coming through this email- my mind is racing and I am nervous.

Thank you so much.

Sally

Hi, Sally
were you staged as T1NOMO without a scan? While the human eye and touch are excellent diagnositic tools, they can only see so far.
My husband's ENT, RO and MO each encouraged a second opinion - I think getting a second option would be a good idea.

Thank you Maria!

Just to be clear- I had a partial glossectomy & neck dissection which is how they feel confident with the T1N0M0 diagnosis.

However- no scans.

Sally

I'm going with common sense. Touch and eye!!! I never heard that before. Hmm not big on Scans in my opinion a CT Scan tells a lot.
He hasn't spoken to the pathologist before your visit then how can he tell you anything?

I sure would get a second opinion. I wouldn't be too happy with what he told you.

I know you want to get it over with, get the best care....go for the second opinion. I know there is a list of Cancer Centers on the forum I don't know how to post them. Maybe Christine or one of the other posters will.

Keep us posted.

Take care,
Connie

Thank you, Connie.

But also- he had the complete path report printed out- but he had not spoken to the pathologist who created the report. This may be standard. I just don't know.

I don't want to sound too down on things. The surgery was thorough- I am healing well, and he took lots of time with us as he has always done.

Thanks,
Sally

They generally rely on the report - if they have any questions about the report they will contact them. The report is enough. However the scans are important. I believe a combination of both is important for diagnosis - protocol at my hospital is a baseline scan of head neck and chest - prior to treatment (radiation) then a comparison scan 3 mos after. I think I'm due for one in dec too. Scan will pick up something not visible to the human eye. For the longest time I had a lump in my tongue - to look at it - other than some redness - it wasn apparent! My first biopsy was negative - a ct might have picked it up! If nothing else it would have given the dr. Someything further to look into maybe even indicate a deeper biopsy. I would ask for a scan. as for a second opinion I would definitely go with the radiation... It was recommended for me for the same reason (PI) plus I had a node with ECE - your radiation guy may also have a say on the scans and he may also be your primary go to man/woman. Good luck!

If you opt for the radiation, they should do a head and neck CT at your planning session. I had an MRI before surgery and it did not pick up my tumor. Thankfully it was clearly visible so we already knew it was there. Some doctors rely on scans more than others. My surgeon is not a big fan of the PET scan but I'll be getting one anyway since it's part of the protocol for my clinical trial.

I know how hard it is to make the decision to go ahead with radiation. My tumor board was split on whether or not I needed it. My surgeon felt that since my positive nodes were both tucked right up under my tongue and were totally encapsulated, that I didn't need radiation. The radiologist disagreed. If a second opinion will help you make your decision or help you feel better about the decision you've already made, then go for it.

Sally, please get a second opinion! Your doc may be excellent but scans are an important part of diagnosis and a tool for planning. Im pretty sure the scans are part of how the doctor gets the Stage. Here are some important links to help.....

Here is a list of the best US hospitals for cancer....
http://health.usnews.com/best-hospitals/rankings/cancer

Here is the list of National Cancer Institute approved cancer centers, along with other important info....
http://oralcancerfoundation.org/resources/index.htm#centers

NCI Treatment Guidelines...
http://oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf

Thank you all!!

Tracy- I think this sounds similar to what you are saying. From looking at Sloan's rads protocol- it looks like there will be a CT during set up. I know that we definitely want to go ahead with the radiation- but I also want to ensure that this is the most aggressive treatment and the most limiting for a recurrence!! For that purpose we will more than likely seek the second opinion.

I appreciate all of your feedback.

Sally

Sallyanne

As usual my post is somewhat contrarian. A skilled doctor can indeed detect oral cancer tumors by touch and feel. I had just gotten an all clear from a PETscan in October 2008 when one month later my ENT felt "something worrisome" in my mouth from pressing on the tissue during her exam. She was right, the cancer was back. Now all my doctors decided not to order any Petscans for me, just MRIs/CT combos.
With PNI, radiation is almost a necessity to avoid recurrence IMO (based solely on what my doctors all said about PNI). I was told that the most aggressive treatment would be to a combo of radiation and chemo, which I opted for after the recurrence even though I had had the "maximum" radiation and 8 weekly chemo the first time around.
You are almost to the finish line here.
Keep the Faith
Charm

Charm, thank you so much for your reassuring words. Hope that you are doing well!! Sally

Hi Sally,

Glad to see that your surgery went well. Radiation is tough but absolutely doable. You will feel not so great for awhile but it really is the best method for killing off any stray cancer cells.The first chance is the best chance you'll ever have at beating this completely. Definitely do the maximum you can do to get this awful thing out of your body once and for all and then you won't have to think about it again.

My doctors were extremely aggressive with me. It was very rough at first but I am almost at 5 years now and I've regained alot of pre-cancer functionality. My neck is still stiff from the radiation and surgery combo. I work with chiropractors and massage therapists and it still gets better. I feel it is a small price to pay for peace of mind that I did everything in my power to get rid of this thing.

Don't be too scared- it wasn't as bad as I thought it was going to be- just gradually more uncomfortable and tiring as time went on. It isn't as horrific as I had imagined in my head.

Hang in there! You will get through this.

xoxoxo Kate

I had perineural invasion too and radiation was reccommended to me too- I also had the 3 mega cisplatin treatments... I think this is the usual reccomendation.

Thanks Kate. I love reading how successful all of you UCSF patients have been... I grew up out there- and if we ever move back, it's great to know that follow-up care would be excellent!! The RO I met with last week here in NYC did two years out at UCSF also. I loved her- she made an incredible impression on both my husband and me.
Thank you so much for your encouragement. What type of chemo did you have?

Congratulations on your almost five year mark and your huge accomplishments after a total glossectomy.

While it sounds like everyone you are around knows what they are doing, I guess I'm a middle of the roader on this. I know some top places do not rely on scans as much as other top places. At MDA, for example, I've never had a PET scan, & I don't think they do them as a rule. But they do CT scans, never without thorough clinical exams though as they think it takes both. My ENT oncologist says that a clinical exam can be subjective, while scans are objective. I know Fox Chase is a place that does not do routine scans AFTER you've been treated. My PCP is always wanting me to count the number of CT scans I have as he says: "no one else is counting, so you'd better".

I know what Charm is saying about a doc finding something that did not show up in the scan. It happened to a relative of mine with breast cancer. But I like to hedge my bets.

I'm coming into your story later, so maybe I'm missing something. Did you have a CT to look at lymph nodes at some point? Second opinions never hurt; you won't have a chance to do that after treatment, only now. You mentioned Sloan Kettering--my cousin was treated for kidney cancer there succesfully and raves about the place. Lots of good places near where you are.

Best,
Anne

Thank you all for sharing your experiences!! This is very helpful.

The treatments they are telling me about are consistent with what they told us presurgery. They told us that evidence of PNI was reason for radiation. They said if my nodes had been positive - chemo & rads would be the course.

Kate, can you tell me more about the 3 mega Cisplastin?

Thanks,
Sally

You didn't ask me but I will tell you MDA seems to have gone for the 6 Cisplatin protocol. The reason for this is that so many people seem to not be able to get through the 3 mega, and they feel the results are the same. I did see a study about it when I researched it before I had the Cisplatin, and the study (just one study) showed that 6 cisplatin was as effective. Some others may tell you otherwise. I do know MDA used at least some 3 mega sessions a year before I got there so they may have just switched.
Anne

Thank you Anne.

How did you do on the Cisplastin & rads?

Apologies if your story is on here- I haven't looked yet.

Thanks,
Sally

I did ok with treatment. I had IMRT, "every lymph node in your neck," I remember the RO saying, but more on the bad side of course, and my tongue. I think I did not have more radiation in my mouth because they had removed more of my tongue after I had the original small lesion taken. There was no additional cancer. Radiation was not too bad until the last couple of weeks, but I still managed to eat & keep the sores from getting to me. The 10 days after treatment lived up to its reputation of being the worst. Chemo was a bear for me, but probably would have not been had I not had another problem, which is too much to go into here. I had a GIST (gastrointestinal stromal tumor) which is a sarcoma that grows out from your GI track, in my case stomach. It gave me lots of digestive problems, resulting in constipation as well. I did not use pain meds, which is just me, and did not have a feeding tube. No one knew about the GIST which was large, had lived in my body for years, but is now gone and needs no further treatment. That story is in the general topics page if you want to know, but it is unrelated to oral cancer, so probably not.
Anyway, how your treatment will go depends upon a number of factors. I had a great will to get through it without using much in the way of pain meds (which was 0 until after treatment), and I wanted to keep my weight up. It became a goal and a challenge. I was religious about taking care of my mouth (baking soda rinses if/when I saw any sore) and tried to make some time in my life to read, watch TV, go to integrative medicine classes, which included exercise and meditation, etc.
You too can get through it!
Anne

Anne is right (she's also amazing!!! ) rads can be hard or manageable it really depends on the individual! How they are with pain! And how their body reacts to things. I too avoided pain meds until the first week post treatment. Then I used them for a week or so to get through the worst. I'm not really into pills and despite all the prescriptions I filled and that they gave me I just really didn't need them so if I didn't, then I didn't take them. Someone said to me don't try to be a hero. I told them I wasnt, if I was in pain or needed them I'd use it... I just didn't see the need to medicate for no reason. With chemo and rads your body is already out of whack adding to it just didn't seem right some how. cisplatin wasn't too bad for me... The nausea was well managed I did take the prescribed anti nauseants for the tree days following my treatment. And i think I used maybe 4 of the break through nausea pills they gave me. But for he most part it wasn't bad. Mind you the hospital protocol here is 24 hrs in the unit on an IV as the cisplatin is very hard on the kidneys. So they bolused me fluids and anti nauseanrs - day one. it's doable. Like Anne ... Getting through it was my goal. take care!

Thanks Cheryl!!

You guys are true women warriors!! I have found so much inspiration from so many of you!!

I hope you are all as active on the boards in the next few months. Your journeys serve as pep talks!!

Thank you again! Going in tomorrow for the MOs view on Erbitux v Cisplastin based on all of my specific information. I will keep you posted!!

Hi! Sally feel free to PM me anytime Yes UCSF is amazing. The Drs. there took really good care of me. I feel blessed and feel like my recovery from such an extreme surgery has been so good due to the way they performed the reconstruction.

So I did OK with the Cisplatin. For me the surgery and recovery from that was the worst part. Then end of radiation was also pretty rough for me. Yes it is true everyone has a different response to the treatments.

You will be an infusion room with other patients or in a hospital room with a bed. Its very comfy. I mean no a day at the spa or anything but you are just basically sitting there. I was in a recliner with a view of the Golden Gate Bridge. Not so bad. I didn't feel sick during the infusion- although afterwards I did feel a little hyperactive from the steroids I think. They first infuse you with fluids, then steroids I think and then anti-nausea meds. Then they give you the chemo. The actual chemo part only is about an hour or so. then they give you more fluids after that - at least from what I remember.

Afterwards they give you pills (Emend) that you take on a certain schedule for breakthrough nausea. They worked really really well. Only a few times I could start to feel it coming on. Apparently this Emend stuff is one of the best ever. We are lucky for that! I can only imagine how rough it was back in the day. One thing I wasn't expecting was being around all the other cancer patients. If you are in an infusion room you will meet some people who are getting chemo just to live another day. This really was intense and shocking for me. It was a little upsetting at first. So be prepared.

It was good though- it made me realize how lucky I actually was that I was getting this chemo just to take care of any stray cancer cells and make sure I wouldn't have a recurrance when for these patients they were getting chemo to minimize the cancer so that they could live longer. So that puts things into perspective really quickly

OK girl-- here goes! Sorry to be graphic but you asked for the real scoop on the physical effects.

So after the chemo I felt a little funny but not sick. The radiation effects started to kick in fo rme around week three. My throat was extremey sore and raw. Thick gross saliva (think ghostbusters-- yeeah..)- and that made me feel really sick to my stomach. I had a rough 2 weeks toward the end- when I was done actually because the radiation and chemo is all cumulative and I think they give you the max radiation at the end. You will be full of radiation and chemo by the end- when you want to be celebrating that its all over.. you won't feel so hot. I was crazy exhausted. Had trouble getting dehydrated from the nauseau which made me feel sicker. When this happens they infuse you with fluids which makes you feel soooooo much better. For me it was this bad cycle of getting nauseaseated and sick and then getting so much sicker from being all dehydrated.

Also the entire inside of your mouth and throat will be burned and red. This was painful fo rme. I went back on the fentynyl patch for awhile so don't be alarmed if you need to take some heavier medication. My chin, lips and neck were also extremely raw and red. The hair on the back of my head fell out- mid way up to the neck.

So I may have gotten a waaaay way more intense version of what you are getting- I don't know. My cancer was much more advanced and my surgery way more extreme.

Fast forward to 5 months later and all the major effects of the radiation and chemo were gone. My neck was still very sore and stiff and it still is from the neck dissection and radiation combo. The radiation does a number to the surgery area. It hardens the muscles or something but like I said I try and get massages regularly and I work with chiropractors and physical therapists who help me a lot.

Its all doable- certainly not fun but you will get through it.

I'm SO sooo soooo happy that you've been able to catch this at an earlier stage for you. I knew there was something very very wrong but was misdiagnosed for many months while the cancer grew and they couldn't save my tongue at all and it almost spread all over.

Tongue cancer is serious and can spread fast if it is not caught in time which is why they want to throw the book at you. I know its so completely terrifying and I'm so sorry you have to go through it. You don't want to have a reoccurance and please just do everything you can that they reccommend.

The treatments totally sucked - I will not lie but you just read lots of book watch lots of movies and get your mind off of the discomfort. Mainly its discomfort not agony... and it gradually built up for me it wasnt like I was lieing there writhing in pain barfing every two seconds. I think I envisioned that would be the case.
ALTHOUGH- I once almost threw up in a mall and on a bus
Because your body will fool you- you will think you are totally fine and then just randomly it will come on.
... it was mainly just feeling kind of flu-ish and bleh. Afterwards when you heal up you will be so excited! Everyday you will feel better and better and you will appreciate feeling healthy and good- so that is a silver lining.

So hopefully I haven't grossed you out of shocked you too much.
Take care and email me anytime.


LOVE, Kate

I was told pretty much the same thing, although I had tonsil cancer. I opted for radiation & chemo and I have had a "complete response" to the treatment. It wasn't easy.

The surgery option would have caused major quality of life issues and my team felt that my morbidity would be improved without the surgery (which would have been 14 hours on the table).

Tongue cancers are tougher and more aggressive then tonsil cancer. I believe that the NCCN Oncology Practice Guidelines still put radiation, with concurrent chemotherapy, as the first choice for treating tongue cancer. You may double check this on the resources section of the OCF site.

ps I am also a UCSF patient, at least that's where I received my RT.

Chemo and radiation first is the recommended for base of tongue not anterior tongue cancer for which surgery and radation and possible chemo... or so I've been yold.

I was told the same thing miss Kate. Because non HPV cancers aren't quite as responsive to just rads and chemo - surgery is the first treatment. good luck!