Hi everyone,

My 28 year old, non-smoking daughter has Stage 3/4 tongue cancer. She was diagnosed in August, had surgery Sept. 4th and is going to start radiation soon. MAYBE going to start soon. I have been reading on this forum for hours and we're not so sure now what the best course of action is.

The surgeon was very aggressive and is confident he got the entire tumor. The margins are all clean. The grade is well-differentiated, there is no necrosis, no vascular or perineural invasion noted, no evidence of tumor multicentricity and no in situ carcinoma. So far, it all sounds good.

Now, the bad part. He did a neck dissection and of the 15 lymph nodes removed, 4 were positive. The largest node is 1.2 cm. Her staging is T2, N1, MX. We will have results of a lung and liver scan soon, which will determine the new "M" status.

The recommended treatment is 6 1/2 weeks of the highest dose radiation possible. Since she is young and in otherwise good health, they feel she can tolerate the high dose. However, after consulting with specialists at John Hopkins and Sloan-Kettering, they are not recommending chemo. They say using it gives no extra advantage.

I'm wondering what your thoughts are. At first, we said yes to the most aggressive treatment available. Now, she is having second thoughts. She is not so sure she can live with the reduced quality of life that seems to be the norm after massive radiation. Of course, we understand she can't sit back and do nothing. But would it be plausible to have a lower dose of radiation to minimize some of the long-term effects and do the chemo to "make up the difference", so to speak?

The after effects of the radiation can be so severe. She's wondering if it is really worth it.
She's been pretty positive so far, but this really has her down.

I would appreciate input from anyone, but getting the opinions of Stage 3 or 4 survivors would be great. Has anyone ever refused the radiation or chemo and just gone with the surgery? Has anyone tried alternative therapies? I don't think she'll refuse the radiation altogether, but she's starting to lean in that direction and that scares the ___ out of me!

Thank you in advance,

Rosemary

Your doctors comments ring true about the marginal benefits of the chemo regime. Please do not try to second guess them and opt for some unproven partial radiation partial chemo regime. These standards and protocols have been established by multi-center clinical trials over the years, and they are the gold standard by which all other treatments are judged. I have had the maximum doses of radiation that can be given at age 49. They had to quit before completely eliminating my late stage tonsilar and cervical node cancer, as my spinal cord (within the radiation field) had received the maximum dose before it would likely be permanently damaged. Four years later I can tell you that the treatment is tough, and the 1-year recovery afterwards was tougher. But my life now is practically normal. Yes I have xerostomia, but my water bottle is as natural a part of my routine and my left hand as a watch or wedding ring. I have few limitations in my eating habits, other than things that are extremely dry are off the menu. Life is good. My speech, diction, swallowing are relatively normal. My taste buds never came back 100%, with a lacking in the sweet area, but on the positive side, that has curbed my desire for tons of chocolate, ice cream etc. which weren't good for me anyway. I have no disappointments in my current diet. While concern of effects is certainly something that will be on your minds, primary recovery and elimination of the cancer is goal number one; 5-year survival is goal number two. Living with the long term effects of radiation treatments should not be your concern right now.... just get goal 1 and 2 out of the way. There are ramifications to every treatment. But they will seem small as a new life opens up where the previous one was in jeopardy. My best wishes for a speedy treatment and recovery.

Rosemary:

a short post here because I am on the way to work but sensing your anxiety. Radiation treatment is a MUST and is the tried and true protocal for follow-up care especially if you have nodal disease.

The debate is really about the advantage of adding chemo too and from the research I have done it does seem like you daughter might be a candidate.

Sounds like you need to see at leats two different heme onc docs to get their opinions on the chemo piece of the puzzle. I doubt you will find anyone who advocates for skipping the radiation. Instead, you might find a debate about standard radiation versus IRMT (see area on this site that explains).

Dave starts radiation this morning and we are both also scared shitless (can you say that here?) about reducing his quality of life but we recognize that it is a proven and necessary course of action.

We have checked out some compimentary modalities and I'll write more later.

Hang in there,

Kim

Rosemary,

Adding my two cents to the discussion. My mother is 71 with stage 4 oropharygeal cancer. She has had 7600 rads to the neck and 5 treatments of cisplatin and 1 treatment of carboplatin.

You can not determine the radiation dose by the length of time. Most patients have a treatment of 6 to 7 weeks but that does not mean they have the same amount of radiation. You have to ask the doctor or tech what the daily dose is to determine total dose.

As far as chemo, this is a relatively new addition to the mix so many oncologists are leary about using it and there really is not enough information available yet to make a conclusive decision. Unfortunately, patients are left to read the opinions of specialists, ask others as you have done and draw their own conclusions. But one must remember this - radiation has it's place for local tumor control but when there is systemic involvement (i.e. lymph or blood) you have to employ another modality. In this case, it would be chemo. So as Brian pointed out, this can not be treated piece-meal if you want the maximum control of tumor spread.

All things considered, 6 weeks post treatment, my mother is doing O.K. She has not had her neck dissection yet so is behind your daughter in that respect. And we are not sure she will have one because she also has a lung lesion that needs to be addressed.

In your daughter's case, one has to consider that she is stage 4 and what the probabilities of a long-term survival are using the modalities available. Some of the decision will be based on your daughter's personal feelings with the assistance you are trying to provide.

I'm sure you have learned that the role of family members is to act as a cheerleader for the patient. It can be difficult and tiring but we have to remember that the ultimate decision is should be made by the patient.

Best wishes to you and your daughter.

Cynthia

Rosemary,

I too have had a neck disection followed by 8 weeks of radiation. Yes, I was starting to feel pretty run down the last couple of weeks and a bit discouragred, but then it was over and the healing begins. It is slow but everyday is a little better.
Like Brian, I lost the chocolate part of taste buds and still have trouble with spicy. Dry mouth is something that's just a part of my life now and not really a bad thing because it can be managed.
And I really don't know to this day if I realized how bad I was feeling until I started feeling better. It does get better - the energy returns, the appetite returns and as trite as it is to say, there is a new appreciation for things.
My doctors also went with the standard of radiation and surgery. When I asked after why no chemo I was told all the results weren't in yet on how much more effective they are in combination. But they were harder on the body in combination.
As I'm sure they told your daughter and keep telling me "you are young and healthy" so the aggressive approach is the way to go.
Best of luck and we all undersstand the fear of the treatment,but hope that she can overcome that and get on with the priority of curing the cancer.
Take care,
Dinah

Rosemary:

I did think of one additional point to share driving into work today and I share it not to scare you but to hopefully aid in your decision making process about the value of post-op radiation after neck dissection.

As it was explained to us by Dave's surgeon, the number of nodes removed from people during neck dissection varies as does the number that can be visualized and fully assessed in a surgical specimen. For example, your daughter had 15 nodes removed and identified and 4 were noted to be positive. Dave had >30 removed and one was positive. It is not uncommon for there to be variability...

The surgeon explained that there are also often more nodes in a surgical tissue sample than can be identified and assessed on the final report because some are so minute they can't be separated out from the tissue.

That said, he also explained that you can never be 100% sure you got a "completely clean" neck dissection (although most experienced head and neck surgeons can give you a play by play about how well they think they did and how confident they feel about the surgery based on their experience doing so many of these procedures).

So, the long answer here is that radiation therapy acts as a vehicle to erradicate any microscopic disease left in the tissues themselves and in any "teeny tiny" nodes that may have been inadvertently left behind during surgery because they couldn't be seen.

Caveat to Brian-I am repeating what Dave's surgeon told us when we inquired if he "really needed " radiation. Please feel free to help me out if my explanation needs your expertise to further clarify.

Thanks,

Kim

Everyone,
Thanks for all the info so far. We talked to the rad. onc. again today and are awaiting a return call from the chemo onc. Heather is feeling a little more comfortable with the suggested treatment, but we need a few more answers yet. They were actually wanting to start her radiation tomorrow, but we don't think a few days delay should hurt. Hoping so anyway.
She has seen a dentist, but they haven't made the tray yet. Is it wise to start radiation before she starts using the tray? Also, part of why she was so scared of the
radiation was because we were told she would be getting the highest possible dose. We were just told today the dr will be shooting for a total in the mid-6000 range. I've read posts from people that had 7600, so how can hers be the highest possible? Everything is just so confusing and contradictory.
Any info is welcome at this point. Thanks, Rosemary

kcdc....your posts are so thorough that there is nothing I can add to your comments, they are clear, complete, and accurate.

rosie.......in stage four cancers, DAYS DO COUNT. What is worth the postponing of radiation treatments and courting further risks by delaying killing this cancer? You need to be moving forward quickly as this cancer has already had an opportunity to begin distant metastasis. This disease moves very quickly once it is in the lymph system, which is connected to all other parts of your body. Please read the page on metastasis of cancers in the main site if this picture is not completely clear to you. The lymph and circulatory systems are the high-speed autobahn for cancer cells to move to other areas of the body. A stage four patient is at extreme risk. I want to be supportive here, but in reading your first post regarding possibly not choosing the most aggressive treatments because of the side effects, I must say that your perspective seems irrational to me. This is not about side effects. Survival rates over 5 years for stage four patients are not good. That's pretty blunt, but true, said to get your attention. You need to be thinking about the most aggressive things you can do to ensure that 6 years from today the person you care about and love is still here. You will never get "enough" information to make a black and white definitive decision about treatments, you are going to have to trust the medical professionals who have been engaged to save your daughters life, and you and she need to do that now. In the last month OCF has lost 6 of our original members from a year ago, all with late stage cancers, and our membership is small in comparison to the number of oral cancer patients in the US. Please feel my sense of urgency about all this. You can beat the statistics. But you must act aggressively and definitively in a timely manner.

As to the trays, they become the most important when the saliva begins to go... that will be after a week to 10 days (approximately) of treatments. If it were me, I would start treatments and get my trays delivered during the first week. If the dentist cannot meet your schedule, get someone else. Trays take a simple 10-minute alginate impression in the chair and then a master cast is poured from stone into that impression, (30 min), finally they are made in a vacuum-forming machine by the lab tech in about 20 minutes. There is more at stake here than his schedule. Be as assertive as necessary to get what you need right now.

Rosemary:

I echo Brian's eloquent remarks above. Every minute counts in late stage cancers with nodal involvement, especially when there more than one involved. Think of it as an equation...for every node involved the urgency factor goes up as does the speed of information gathering (this part is awful!) and the number of options to explore. In a weird way, clients with Stage 1 and Stage 4 cancers have more direct options (such as adding chemo) than those is Stage 2-3 where the "gray zone" looms large and rampant debates ensue over amount and type of radiation and the value of chemo.Thsi is partly why you are hearing our take about being assertive and getting as many opinions as you need to feel comfortable with your treatment choices.

I share your sense of being overwhelmed-Dave and I are both nurse practitioners and we feel consistently overwhelmed. But, Brian is on the money-you love Heather and if you can help co-pilot the bus she is driving toward wellness you will be offering her the best you can as someone who has cared for her well being since infancy.

I think it is good that your pursued the heme/onc route. I strongly endorse asking for adjuvant chemo and if not, ask for solid rationales as to why not. Heather does seem to be a solid candidate for Cisplatin and her previous good health and age support her tolerance of what will surely be a tough regime.

As for the dental trays, Dave went for his exam and impressions and received the trays within a week.Don't let that hold up starting treatment. The key question to ask the dentist is also if he/she is comfortable following Heather during the course of the treatments when some expediency might be required if she develops a dental issue during treatments. We found that having a dentist (just like an ENT ) who is well versed in oral cancer diagnosis and treatment protocals is essential to the process.You also haven't shared what kind of surgical procedure Heather actually had but make sure the dentist is comfortable navigating the landscape of her post-surgical mouth. ASK! ASK ! ASK!

I'm thinking it might also be helpful if you give us a bit of background about Heather's diagnosis and her surgical course. Do you have one MD who is is charge of coordinating care?

Another thought- ask to meet with a radiation oncology nurse and/or an oncology nurse practitioner who specializes in pain control during treatment. He/she can also address the psychosocial side of living with cancer as a young adult and help her stay emotionally afloat during the treatment process.

Many nurses also do therapeutic touch and massage therapy which is helpful both physically to reduce neck swelling but psychologically.

Hang in there...we'll help you through it,

Kim

Thank you all.

Heather will be starting RAD Monday. I feel chagrined now about delaying the few days. I'm beginning to think that I shouldn't have done so much research. Although, if days are so important, I'm wondering why we didn't meet with the oncologists sooner. We weren't given a sense of urgency by the surgeon. Don't get me wrong, he is an excellent surgeon. Everyone says he is the best in our area. But I'm thinking he should have set us up to see the oncologists sooner. Even if she wasn't healed enough to start RAD, we at least could have had the options presented and decisions made earlier.

Anyway, although she does have nodal involvement, and I do understand the severity of this, we are holding on to the fact that the largest node is only 1.2 cm, there is no perinodal extension, no vascular or perineural invasion, no tumor necrosis or multicentricity, it is well differentiated and the mucosa is non-neoplastic. Now I understand the basics of all this, but I have no idea which of these diagnoses have the most impact. Does the fact that 4 nodes are involved mean the rest of the data is relatively meaningless?

She did have a neck dissection so the affected nodes were removed. Can we at least have a little hope that it hadn't spread beyond that area yet or is that mostly a false hope?
How true is it that this cancer is more aggressive in young people, therefore the chances it has spread further already are high?

Just as a recap, she first had pain in May, nothing was visible to the dentist in June (and he does do an oral check at every cleaning), nothing was visible to the GP in June or July, nothing was visible or palpable to the ENT the beginning of August, a CT scan showed nothing, but by the time the CT results were in, about a week, the tumor was visible & palpable. That sounds like it had a real fast spurt of growth and I'm assuming that is not a good sign.

Her CT scan of the chest and abdominal area are back and they are negative. But since nothing at all showed up on the original scan of the head and neck, how can we know it isn't in the nodes on the other side of the neck? They didn't re-scan that area. The RAD oncologist did want to radiate both sides of the neck, but the medical onc. doesn't seem to think that is necessary. And given the almost 100% chance of zerostomia, Heather is reluctant to do both sides. They will be giving her amiphostine, but it will be of no help if she can't tolerate it.

The doctors are sticking by the idea that chemo given with the RAD is not of enough benefit to be warranted and that the increased side effects are not worth the negligible benefits. We will be looking at maybe doing a chemo wash afterwards. We are still confused by this issue, but in order to get the RAD started, we had to make a decision.
I guess only time will tell if it was the right one.

Kim, I don't have the report in front of me, but basically her surgery consisted of removing a small portion of the back of her tongue (the tumor itself wasn't on the mobile tongue, but on the base), removing 2 teeth because it was very near the gum (it did not invade the bone), removing the 3 cm tumor and doing a left neck dissection. The path report shows that a 2.4 x .3 x.3 cm piece of anterior tongue was negative for carcinoma. The dental margin was also negative. It was 2 pieces each .8 cm in greatest dimension.

The neck dissection included the submandibular gland and was 16.2 cm long and varied in diameter from .8 to 4.0 cm. The submandibular gland was okay. The partial glossectomy measured 5.0 cm from anterior to posterior, 3.2 cm lateral to medial and varied in depth from 2.0 up to 3.5 cm. All the margins were negative for carcinoma. Now I understand most of what I just wrote. The rest is about the tumor itself, but it is a little murky. I am going to put it exactly as stated in the path report. Any enlightenment would be appreciated.

"Centrally located on the mucosal surface is a depressed area with a friable gray ulcerated lesion measuring 3.0 cm from anterior to posterior and approx. 1.4 cm from left to right. Anterior to this lesion is a firm white plaque-like area measuring up to 1.5 cm in greatest dimension. This white plaque is located 3.0 mm from the resected anterior mucosal margin. Located 2.0 mm from the sutured dental margin is a glistening tan raised nodule measuring 1.5 x 1.0 cm."
What do the white plaque-like area and the tan raised nodule mean?

We do not have an MD coordinating everything. We have just been referred from the surgeon to the medical oncologist to the RAD oncologist. We have talked to an onc. nurse and have been given lots of info about pain, feeding tube, importance of nutrition, maintaining weight, etc.

I'm sorry this post is so long. If you got this far, thanks!

Rosemary
(I should change my member name. Don't know why I picked Rosie, haven't been called that for years except by my Mom and sister.)