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?

First - thanks to everyone for your responses...I'm so glad I can rely on you to provide knowledgeable advice and care.

Maria - it depends. I can work from home, but most projects do require travel. So, I might be able to work something out to ease back into work by working on small projects that don't require travel. Also, I was only there for 6 months, and there's huge learning curve involved, so I feel like I'll need some time just to get up to speed on the basics.

All good advice. I'm meeting with the oncologist Monday, so I will have a better picture of the treatment plan then.

There were a couple of things the nurse mentioned over the phone that I was curious about:

1. She said I should probably get a feeding tube put in either before or at the very beginning of treatment.

2. She also mentioned using something called a portacath if I need infusion. My doctor didn't say anything about infusion. He just said that over the 6 week radiation treatment, I would have three separate chemo treatments: 1 the first week, 1 the third week, and 1 in the fifth week.

Any feedback would be welcome!

Thanks,
Gina

Opinions about a feeding differ with doctors, and even patients. If you already lost 5 percent of your body weight unintentionally at diagnosis or expected loose that during treatment, one may be recommended. It should be done before treatment to reduce risk of infection since if one is needed during treatment, your immune system is lowered and increases the risk of infection, and treatment may be ceased to have it surgically placed. A peg-tube or J-tube is surgically placed, but a nasal tube can be placed when needed, but some complain it is a discomfort. I had two peg tubes.

Chemo treatments are usually infused. A port-a-cath is a central venous line to infuse the chemo, instead of getting a venous line placed each time, and saves the veins from the chemo burning them up, to take blood, and deliver other meds. This too needs to be surgically placed below the colar bone under the skin near the shoulder. I had mine for three years, but is usually taken out when no more treatment is expected due to increaed risk of infection, and sterile methods are used when and after accessing. Some get a pic-line, which usually goes in the upper arm for infusions, instead.

The lymph node that was leaking for my wife was also only 0.7mm in diameter which baffled our doctors as well.

In regards to your two questions:

a) I would highly encourage you to stay off the PEG and try and feed orally as long as possible. If push comes to shove and things get difficult during treatment, you always have the option to get a nasal gasteric tube inserted which is less invasive.

Try and eat as much as possible NOW and put on as much weight possible because once the docs see you lose more than 5% of your pre-treatment body weight, they will recommend you get the tubes fitted in.

b) A portacath (PICC line) is great as any time you need a blood test or need to administer chemo, you do not have to get needles poked at you every time by the nurses.

As for the 3 administrations of chemo which I am assuming is just cisplatin, ask your doctors if you are able to split that to 7 smaller doses instead of the '3 big bag' as it is much easier to tolerate and basically has the same effect.

As stated in an earlier post, my wife who has just got out of treatment is a very similar scenario to yours and if you want to learn more about what we went through, there is a post below in this section that may give you some further info on what we went through.

Hope that helps.

Jay

Hi Jay,

Thanks - I will definitely question the treatment method more and see if a PEG tube is actually needed. I'v only lost about 4 lbs since surgery. Also, I don't think they are doing a "three bag" chemo. The chemo is spread out two weeks apart. So, in week 1 of radiation, I will get one chemo treatment, then another in week 3, and another in week 5.

The way the nurse explained the portocath is that it goes under your skin into your chest. But, a PICC line is different, that's just in your arm. Do you know which one your wife had?

Also, I'd love to read your story - is the topic you are referencing named, "Concerns over PET scan"?

Thanks again,
Gina

Hi Gina,

Good to hear that you are keeping your weight steady. Make sure you pack on some additional weight as it will get more difficult to eat once treatment starts.

The method for chemo you are referring to is in fact the '3 bag method' - 3 large doses of chemo spread across the duration (generally in weeks 1,3 & 5) that you receive radiotherapy. Again, ask your medical oncologist if you are able to spread the chemotherapy treatment in smaller doses across 7 weeks as the results are the same, and the body tolerates it a lot better!

My wife got the PICC line which is a bit different from the PORT but both do the same thing - no need for the nurses to poke you with needles everytime blood tests are required or chemo is administered.

My wife's story is indeed under that title (I know the title is deceiving) and you should see our story from the middle of that thread all the way up to now - 8 weeks post-tx.

You will get through this but make sure you brace yourself as everyone on this forum who has gone through treatment will testify that the radio & chemo therapy is actually more difficult than the surgery itself.

Eat lots, drinks lots & rest lots as all the nutrition you can take on board now will do wonders once you start treatment!

Let me know if you have any other questions around treatment and I'll be happy to answer what I can.

Jay

Hi a peg is not a bad thing to have. As others have said the down fall is becoming dependent on it. Usually by the last few weeks things are pretty rough in your mouth and throat - aside from the mucous, and gagging, you'll have mouth sores and no taste. This all makes it brutally hard to eat and drink. I had a oeg but couldn't tolerate the feeds (I would throw up every time) so I sucked it up and chugged ensure 4 times a day with a bit of protein powder. Not a bad thing as It help keeps the swallowing Intact. A nasal tube for a week or so is not a bad thing but its a pain in the butt for longer than that.

My dr insisted I have a peg so I did. It can be a lifesaver for some, as long as you remember to swallow - even just sips of water - I was very blessed in that I have a high pain tolerance and did okay through rads. Not everyone is as lucky, so despite having it in - I did fine without using it.

Porta cath? Maybe if you are having 6 treatments, but for three? I wouldn't. it's convenient I suppose but to me three IVs I can deal with since their spread over 3 weeks. It's not like its weekly or daily, and a long term treatment. My hospital didn't even suggest it.

Best of luck.