All,

It's been about a week since my surgery (hemi-glossectomy & SND) and my doctor has been out sick. So, had to send me an email with the pathology results. I'm not really sure what to make of it, but I thought I would update everyone and see if there's any feedback. I should know more later this week when I can meet with him.

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Your pathology report showed the following:
1. The tongue cancer resection showed clear margins with NO perineural invasion. The tumor was 2.5 cm in greatest dimension making the tumor a small T2 stage. The clear margins and the absence of perineural invasion is exactly what we wanted to see.
2. The neck dissection showed that out 58 lymph nodes removed, 4 nodes had small deposits of cancer. This is a clear indication for postoperative radiation therapy. Unfortunately, the pathologist also noted that even though the tumor deposits were very small, the tumor in one of the nodes was just starting to get out of the node. This brings the potential for chemotherapy into the discussion.

I'll have a copy of the report printed up for you and we'll discuss the next steps later this week.
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Thanks,
Gina

For the most part it's good with clear margins, no PNI, except for the lymph nodes, and the possible or beginning of extracapsular extension, ECE, which increases the risk of recurrence, metasteses, and dr seems to suggest chemoradiation, as treatment.. It's still good news is the lyphs were removed, probabky leveks II-V.They may want give more radiation than normally also. As mentioned, the doctor will fill you in more, and what level these lymphs were in. I believe Cheryld had ECE. Good luck with your meeting.

This awesome on the clear margins. I would go for the chemo and rads, the ECE (extra capular extension) is definitely indicative of the need for both these, plus the fact that there was involvement in 4 nodes. The radiation will hit your tongue and nodes and chemo should clean house and make sure sensitize and residual cancer that may be lurking. Hugs - its a long haul but you'll get there.

Pretty much the same pathology report as my wife.

28mm in maximum diameter (T4a due to location) + 3 lymph nodes (all under 1cm) but with ECE. No PNI detected.

I would highly recommend Chemoradiation as ECE is one of the worst prognosis factors in Tongue cancer, and all studies indicate the most aggressive form of treatment is required to have the best chances of the cancer not coming back.

You are young (similar age to my wife) so you should be ok with both Chemo & Radiotherapy!

Hope that helps.
Jay

So, I met with my doctor to review the pathology reports and get some clarification.

As he mentioned in his email, they did find small deposits of cancer in 4 of the 58 lymph nodes they removed in my neck. And, everyone was right - there is ECE in one of those four nodes. He said it was rather unusual because of the size of the node - it was really small. So, he suggested chemotherapy and I decided to go with both radiation and chemo.

The exact dates are still up in the air as I have follow up appointments with an oncologist at Kaiser, and a consult with a radiologist at John Muir. The John Muir medical center is known as the best in the bay area � it�s a bit of a long drive but I want to get the best treatment possible. But, at a high level, I will start the radiation treatments once the surgery is healed sufficiently, probably in about a month. The radiation treatments are 5 days a week for 6 weeks (30 total), and during that time I will also have three chemotherapy treatments. Now, the cancer is officially Stage IV, T2N2bM0. I'm not sure what the "N2b" means as I haven't seen it on a lot of auto-sigs. But, there is technically there is no known cancer in me right now.

I'm disappointed by the news, but I�m still determined to beat this. It just means that it will be a longer journey than I�d hoped. My doctor advised me that I should take off work for 6 months. When I asked him why so long, he said that it will take a long time for my body to recover from the radiation and chemo, even though the actual treatment is only 6 weeks long.

I'd be really curious to hear others that have had similar experiences. I'm really nervous about the side effects, most importantly anything that could be permanent. He did mention that I might need a feeding tube in the latter half of my treatment. Of course I'm tempted to resist that until it's absolutely necessary. I'm really worried about losing my taste buds for life as he did mention that could be possible, or that the radiation itself could cause cancer decades from now. But, I'd rather have another good 20 - 30 years than to give up now and not do the treatment for that reason.

I know I need to update my auto-signature...will do that right after this. :-)

Any thoughts and feedback would be much appreciated. I'm really scared now, quite frankly. I was hoping all along that it would all be over with after the surgery, but it sounds like I have a long and painful road ahead of me.

Thanks,
Gina

Gina, sorry to hear you need more treatment! But its better to get it taken care of now to get rid of the cancer. Hope this will be the only time you have to go thru this!

Many many things to prepare for! Have a full blood work done including thyroid count. Go see the dentist and get any questionable teeth pulled, have flouride trays made. Have a hearing test. Cisplatin (if you are having that chemo) can cause some permanent hearing loss. A weekly smaller dose is easier to tolerate than the large 3 bag method. Eat everything you can! I know you may have some difficulties right now but work hard on getting in all your favorite foods. Dont worry about gaining a couple pounds. Your sense of taste and swallowing capabilities will change usually for only a temporary period of time, so eat now.

Some sail right thru, others struggle thats how it goes with rads. We will be here to guide you every step. if you are the type of person who worries and frets alot you may want to see your family doc about anxiety meds. Just something temporary. Many members (my guess is anywhere from 1/3 to 2/3rds of patient members) have taken these to get thru treatments. You dont need to be on edge and consumed by fear and worry about this. Just knowing it wont be easy or pleasant but you will do it should help you feel a tiny bit calmer about your situation. Its just something necessary to do right now so you can move on to enjoy a long, happy, healthy life. I sure downplay things, dont I? Anyway, think of anxiety meds as another tool for this temporary time frame. Stay busy so you dont worry so much, it really wont change a thing or help.

Anyone who offers to help write down their name and number and tell them when the time comes you will let them know what they can do to help. Even if its making dinner for your family, doing a couple loads of laundry, taking the pets to the vet or having a weekly Saturday play date for the kids, it all helps. Try to line up several drivers to transport you back and forth from rads. Taking strong pain meds makes it where you shouldnt drive, its not safe. Call the American Cancer Society and ask for help. They can give you up to $300 towards prescription co-pays or transportation costs, plus give you a volunteer driver sometimes. I am one of those drivers, I help take cancer patients to their treatments when I have time.


Stick with us and we will help you!

I'm glad you have a better understanding, and things are falling into place. The "N" stands for nodal, and 2b means more than one node is involved on the same side of the neck, and less than 6cm. Taking time off from work differs for everyone, few go though treatment working, some do, I didn't, and at some point may need to take a leave. You might want to look into your employee benefits for short term disability, for income for 26 weeks in a calendar year, and FMLA if they have 50 employees, and you are employed for a year full time, and about 1200 hours worked, which is 12 weeks of job protection. STD pays income through the state or your employer, and some have other compensation packages for tenure. After that is long term disability, if your employer has it. Not sure what else CA has, but I think it's something different than NY? I always say to look into it while you can, just in case needed, not while going through treament, so you won't need to tire yourself later on. I never went back to work after 5 days of treatment in 2009, unexpectedly, and was not fun to have others run around for me, calling work, submitting forms from the hospital, and getting misinformation. No matter how much liked, work is a business, and everyone needs to look out for their own best interest.

Gina,

The major side effect of radiation is fatigue -- like really, really, really tired. This is something you need to consider if you are planning on how much time you will need to take off work. Our RO warned us about that. The fatigue continues for two or three weeks at least post Tx. Hopefully your employer is flexible and will allow you more time if the need should arise.

HI there... the 2nb means more than two nodes... that's what made it a stage IV.

This is not the end of the world so try to just take it one day at a time. I agree with you get the best treatment at the best facility. Your dr is right if it was a small node with ECE then it sounds rather aggressive so best to hit it with both barrels.

Christine gave you good advice. It is NOT a fun treatment but doable. hugs and prayers coming your way. ;o)

Hi, Gina
There is a huge difference in how long it takes people to recover and return to work after therapy. Would you be able to work from home or work part time?