Hello all, My 41/yo daughter has SCCA of left rear tongue - non-smoker, doesn't drink, works out, healthy. The path report on biopsy says "poorly differentiated SCC" & carcinoma extends into skeletal muscle. It sure doesn't sound very promising but dr says it's in early stage even tho it's taken 5 months and 4 doctors to diagnose it. MRI doesn't show any 'obvious' tumor in lymph nodes but we won't know for sure until neck dissection on 10/16. He will also do margins at that time. He says she will have rad/chemo only if nodes aren't clear. Doesn't the poorly differentiated tend to mean that metastisis is probable? And he said if she does have radiation that her salivary glands would be destroyed permanently. Does everyone who has rad lose the salivaries?
Bonnie

Bonnie, it is not the case that everyone who has rad loses their salivary glands. That used to be the case, but with the advent of IMRT, which allows the radiation to be more precisely focused, many times some of the parotid glands are spared. If it is decided that your daughter will need radiation, it will be necessary to closely question the radiation oncologist about this. If the facility where she is being treated does not have IMRT AND if she is a candidate for it, you may want to have her treated at another facility. Although I had 37 sessions and was told the parotid glands on the right side would be sacrificed, they eventually came back and I do not need to carry a water bottle. Always remembering that every patient and his/her treatment is different, I nevertheless hope this helps calm some fears.

Bonnie,
in regards to your questions, first off about radiation. If they are indicating standard XRT then the salivary glands will probably not recover. Many here have that problem and they work around it. If she can get IMRT or PBT they may very well spare a lot of healthy tissue.

Secondly about the risk for metastesis - the playing field is pretty even here. We are all at risk for that. A bigger concern would be locoregional recurrence at the original tumor site.

Age issues: The latest research would indicate that a poorly functioning immune system may play a role with younger patients.

Causitive issues: 20- 25% of H&N patients neither drank or smoked. New evidence has surfaced that some viruses may be causitive factors such as EBV or HPV.

The bigger issue here is the "poorly differentiated" business. In balance, they caught it early so that gives her many advantages. This is certainly not a death sentence but she must be very aggressive and use all of the state of the art treatment options available to her.

This is a classic case that screams out to be done at a comprehensive cancer center, and most definitely a second opinion BEFORE any treatment or surgery happens. We have several CCC's here in California and PBT is available at Loma Linda in So. Cal.

Gary, Her surgery will be at the USC Norris Cancer Center here in Los Angeles. She has been seen by the USC Vice Chair of Otolaryngology Head & Neck Surgery, Gary S at USC & an appointment with an oncologist & another appt with the radiation oncologist next week (they do have IMRT at this cancer center). Are you saying we should seek yet another opinion & if so, with another ENT?
Also, regarding compromised immune system - she's relatively healthy (no other health problems) other than she's so thin & still weak from 5 months of eating modestly because of the pain from the original ulcer. She's not good at drinking water, she got very dehydrated after the 9/5 surgery & is just now eating fairly normally.
Thanks, Bonnie

Bonnie,
it wasn't clear to me from your previous posts that she was already in a CCC. What tests have they done so far, PET or PET/CT, etc.? Has a tumor board been held with input from the MO and RO (the rest of her immediate medical team)?

Joanna's post may indeed be correct about one opinion may be sufficient.

The reason I mention the immune system is that it is more common to see patients in their mid 50's with H&N cancer.

What is she taking for pain management?

No PET or CT only MRI. The only time I've heard the term 'tumor board' is on this website, no mention of it from MD's at USC. As she hasn't seen the oncologist yet is that something that would come after that appt?. She's on Lidocaine & Lortab. The other thing that hasn't been mentioned is stage - is that something that comes after surgery?

Bonnie. My needle biopsy came back with the phrase "poorly diffenretiated SCC" and it was explained to me because the needle biopsy is not as conclusive as a sectional biopsy but they all agreed I had SCC in 2 nodes and they later found the primary at the base of tongue. You memtion dissection...what type are they talking about? Moffitt Cancer Institute, where I ended up after several cancer doc opinions, did not remove the nodes and I rec'd concurrent chemo (3 Cislaptins) and 35 IMRT rads.

The doctors notes say "radical neck dissection" which I assume is to go after the nodes. He said he will also go back inside her mouth to clear the margins at the original biopsy site at the back base of her tongue

Before you let anyone do a Radical please seek other opinions. Do you know what a Radical encompasses? Go on the web and research it. I had one cancer doc that wanted to do a Radical on me and 4 cancer docs that were surprised he did. They don't refer to it as Radical for nothing! Surgery is not always necessary and is not always beneficial. Get other opinions, fast.

Bonnie, more common is the Modified Radical Neck Dissection. You may want to question if this is what the doc meant. I have a scar from that but it is very hard to see, and I wear my hair up. that side of my neck looks just like the other side now.

Bonnie,

I was 39 when I was diagnosed (17 years ago). I had never smoked and was a social drinker and otherwise in good health. Several doctors failed (over a period of more than a year) to diagnose my tongue lesion as cancerous. Once it finally was determined that I had SCC, my cancer team felt I needed to have a modified radical neck dissection, followed by radiation. The surgery included removal of many lymph nodes, all of which were clear, but the tumor was determined to be poorly differentiated, so my doctors were obviously concerned about possible aggressiveness.

I had standard XRT radiation, as IMRT wasn't even available back then. While I had many of the common side effects of radiation for months afterward, I have recovered substantially over a period of time. ALL of my taste sensations returned after several months, my dry mouth problems subsided quite a bit (with the help of medication), and I can eat just about anything I want to. The surgery scars healed fairly quickly and left almost no evidence of what I had to have done. Most people who have met me since my treatment have no idea (from my speech or my appearance) that I ever had surgery or radiation.

I say all this to emphasize that some of the extreme after-effects you are hearing about are likely the "worst-case" scenarios your daughter's doctors are required to describe in advance. Since she is being seen at a major CCC, it sounds like she has a very experienced team who can do their best to minimize the long-term impact while still doing what is necessary to get rid of her cancer.

Please keep us posted on how she is doing.

Cathy

Just so you know, you don't have to search the "web" to find out about neck dissections. New posters here forget we have hundreds of pages of information, and this message board is only one part of the site. So you are informed about the different types of neck surgeries go here http://www.oralcancerfoundation.org/facts/neck_dissections.htm At the bottom of every message board page is a link to the home page of the main OCF site.

Actually the current rate for non-smokers to have SCC (per Johns Hopkins data) is 50% or more. At Hopkins they are finding 70% of their new HNC patients are HPV (human papilloma virus-16) positive (some of these are also smokers). These cancers present first in tonsil and base of tongue, almost none are oral (outer or lateral) tongue cancers. Most of these folks are also a lot younger than the "traditional" oral cancer patients, who also tended to be smokers. This changing demographic is pretty well documented throughout the country -- our ENT (in private practice now) says about 50% of her patients are in their 20s and 30s. And most never smoked.

The usual treatment protocol is chemoradiation, hopefully (as noted) with IMRT and then, if necessary, a planned neck dissection post-treatment. If your daughter has a base-of-tongue cancer she really should not have surgery beforehand, this can lead to a lot of permanent speech and swallowing problems and is not done by doctors at the top 3 CCCs, e.g. MDAnderson, Sloan-Kettering and Johns Hopkins. Whether she would need a ND afterwards depends on how well she gets through the chemoradiation, which is no walk in the park by any means but is very effective in controlling the cancer. My husband did not have a ND, it was not recommended by his medical or radiation oncologists, or his ENT surgeon, based on many tests after the end of treatment. He is now exactly one year from end of treatment and is doing great!

If your daughter has a base of tongue tumor, you can have a sample sent to Hopkins for HPV-16 testing -- http://pathology.jhu.edu/labservices/hpv.cfm
--this is of importance only because HPV+ cancer tend to be more responsive to radiation and far less likely to recur. (It will not affect the initial treatment protocol.) Our dental oncologist, who is on OCF board, told my husband last week he has never seen or head of one spreading beyond the cervical lymph nodes (e.g. to lungs) although this is still montitored carefully by our hospital as they are super-conservative.

Hopkins is now testing a new therapuetic HPV-16 vaccine, and my hisband just entered the trial. If effective, in years to come we may have another weapon in the arsenal against this nasty disease.

And yes, you should go through the OCF web pages as they are about the best I have ever seen (for comprehensivenes) on any cancer site.

Gail

A p.s. -- most HPV+ SCC of the tongue and tonsil is "poorly differentiated" which is strange -- as this is usually a bad finding for cancer -- but in this case, typical. My husband's was "moderately well-differentated" and he was initially told that this might mean it was not HPV-induced -- but his tumor was strongly HPV+.

Have to remember, "typical" in medicine does NOT mean "always."

Gail

Bonnie,
My tumor was in my left tonsil. My was "well differentiated" though. As for your concerns about losing the salivary glands; I had IMRT radiation and they warned me that I could lose some glands on the left side. I finished rad treatments about three months ago and I was setting here eating salty chips when I start reading this thread. I do have some loss of saliva, but I can still get by.

IMRT can spare a lot of the good tissue so you may want your daughter to look into it.

Bonnie, I also had IMRT rad. The facility not only has to have the machine but they need to employee the people that know how to use it. I feel that I am way ahead of the curve in recovery because of the IMRT. Believe me it's still nothing I would want to go through but I believe it's the best way to go.

David

All, Went to Teri's Radiation Oncologist with her yesterday & was pleased to find that they do indeed use IMRT. They assured us that all precautions will be taken to spare the salivaries. The RO recommended an injection of flouro.... something at each treatment which is supposed to further protect tissues other than the cancer cells. Is anyone familiar with this? This center just opened about 6 months ago so they have the latest equipment & the RO comes highly recommended from the hospital. It's interesting that they only tell you the highlights of side effects in the beginning, I guess so they don't scare you away! Fortunately I've got this board! Bonnie

Never heard of a Flouro shot. The only thing close to that was my dentist told me to use a daily flouride treatment for my teeth which I did and still do each am. I assume the flouro shot is completely different so I want to hear about it as well. Any more on the Dissection?

Oh yes, thank goodness it's a 'Modified' ND!

OOPS, the shot is Amofostine (not even close to flouro...)

Be very cautious and careful with the amifostine -- follow *all* the Medimmune recommendations to the letter. They ave a brochure for patients, ask for it. The reason (at Hopkins, per our RO) most patients cannot tolerate more than 3-4 weeks of injections (if that) is that they develop persistent lingering nausea, which is exacerbated by the chemotherapy (especially if they get cisplatin). The good thing is that even a partial treatment seems to help.

My husband got through the whole series of shots but was meticulous about following the guidelines, and also, he did not take Ethyol on his 7 chemotherapy days. He was given carboplatin, which (although a strong emetic) seems not to cause such lingering days-long nausea as does cisplatin, so that undoubtedly helped.

To reiterate:

1) Drink 20-24 oz. of water (jello also counts) starting 90 minutes before the injections. The hydration helps prevent blood pressure drop (see below) and nausea.
2) Take a *serious* anti-nausea med 90 minutes beforehand. My husband took Zofran or Anzemet, the latter towards the end when the Zofran didn't work as well, these are *expensive* drugs but worth every penny if they get you through the Ethyol. Compazine did NOT work!
3) Apply hydrocortisone cream immediately to injection sites (rash, which can become generalized, is another side effect).
4) Your nurse will take blood pressure before administering the injections, and the med will probably not be given if BP below 100. BP will be taken again 15 minutes afterwards. Serious BP drops were common when Ethyol was given IV, not so common now it's given sub-cutaneously, but not unknown.
5) Close coordination with radiation team, radition must be given in a 30-45 minutes "window" after the injections.

On the plus side, it does work to protect salivary glands and there have been some recent papers showing a reduced severity of mucositis (which our dental onc firmly believes). Barry never had really bad mucositis, he ate all the way through and has salivary function in both parotids, even the one which got almost the full radiation dose, which his RO thought would be "wiped out,"

Gail

I want to reiterate what Gail is saying about the amifostine shots as Jack is another patient that completed the entire series by faithfully following the precautions. The hydration and serious anti nausea medication were critical. In addition to the 24 oz of water 90 minutes before the shot Jack drank between 2-3 quarts total for the day, which also helps minimize side effects like nausea. Like Barry, Jack did not get the bad mucousitis and we're hopeful about the salivary function returning as he continues to heal.

You are right that they only hit the highlights of the side effects and treatments in the beginning and that's why it's good to get your own information so you can ask questions. I think we're all in such a state of shock that it's hard to process what they're saying. That's why it's good someone goes with Teri on these appointments and that you write your questions out in advance. The important thing to remember is that there are good results from these treatments and people are surviving these cancers.

Jack also had a modified neck dissection prior to chemo/radiation and recovered well from that. Like your daughter he didn't smoke or drink, he worked out, watched his diet and went for regular medical and dental care. We were blown away to find out he was in stage 4 with no symptoms and no obvious risk factors. In the beginning I was consumed with trying to find out why this happened until I realized that it didn't matter what caused it because we have to focus our energy on going through the treatments to get rid of it. We're all in the same boat dealing with a surreal experience we didn't expect to have and doing the best we can with the information that we have at any given point in time.

Jack and I got through it with lots of support from family, friends, and this forum. Yes the treatments are difficult and there will be side effects - some that may be permanent - but that's what allows us all to be here to share our experiences and help each other. My best advice is to keep visualizing the end result of Teri as a survivor and do whatever you both need to do to get there.

Best of luck and keep asking those questions. If you haven't seen the getting through it posts on this forum they are really worth looking at. Very practical and encouraging information. You can also do private emails to any of us if you have specific questions by clicking on the icon in our posts. Scroll back to see all the I wish I had known comments and that may be helpful to you. Also the home page on this forum has tons of great links and information so look around what's in there.

Regards JoAnne

THANK YOU all for this support - I don't know what I'd do without you! As we're counting down till Monday (Teri's surgery day) the nerves and worries are compounding. I spoke to Teri this morning and she is now starting to accept the fact that this is REAL. I just wish I could take it all away. After reading all the posts re Amaphostine I don't know if she's strong enough to do it. I told her she will need to reach down for strength she didn't even know she had just to get through the surgery & chemo/radiation (if it's needed).
Bonnie

Hi all,
Teri's surgery went well - all margins were clear. Believe it or not I haven't spoken to the surgeon yet as he had back to back surgeries & never came down to talk to me - I left a message with his service to call me. However, I was very dismayed when I got to see her that she's in ICU hooked up to a ventilator! Is that normal? The ICU nurse said it was because of the swelling. They've got her hands tied down because she's fighting the tubes (one in her mouth & one in her nose). Blood is seeping out of her mouth. She became more agitated when she saw me & wrote that she was in TERRIBLE pain and needed help. The nurse said that they are trying to knock her out by upping the meds to the max but she's still wide awake. What could be going on? Bonnie

Bonnie, I hope your daughter is not resistant to pain meds like my hubby was. I can't speak to the ICU situation, since my husband's surgery was cancelled (after the trach and PEG tube were put in). He had pain but they had given him 2 shots of demerol along with morphine and he was still wide awake communicating with me! Just keep telling the nurse she is in pain and they will do the best they can. Disappointed the doctor didn't come and talk to you but maybe there was an emergency he had to attend to. Suggestion: the painkillers didn't work well for my husband,, but they gave him Benadryl for allergies and that knocked him right out! Best of luck for you and your daughter. We are with you in spirit. Please remind her this temporary awfulness Will get better, just hang on!

Pain med resistence is definitely a problem. She's one week post op and on both Codeine 3 and Oxycodone - they minimally reduce the pain for short periods. Along with that she suffers terrible nausea (taking Zofran). Has an NG tube as she can't swallow at all - has swallowed nothing for 3 days. Assume the tube will stay in indefinitely as she starts chemo/rad next week. This is SO hard!!
Bonnie

Neither Codeine or Oxycodone are adequate -they are medium strength pain relievers. Oxycontin, Duragesic, Demerol or Dilaudid would be a better choice, with morphine for breakthrough pain.

I have a person I am helping locally who is on a morphine patch -anyone else out there on this patch?

I was on Duragesic myself with Morphine for breakthrough.

Why the nausea if she hasn't started chemo yet? Codeine can be kind of rough until you get used to it.

Bonnie, Hydrocodone [liquid] has been John's best pain relief thus far. It makes him sleep. He tried the fentanyl patch, but got really spacey on it so he quit using it. He also takes Dilaudid for breakthrough pain when needed. A quiet, semi dark room with good air circulation also helps. I have kept the phone volumn turned to low and tried to keep extraneous noise to a minimum when he was feeling really bad. When the rad\chemo starts, you might want to get a suction machine for her-Ins. should pay- It is so hard to see someone you love suffer. Amy

NG tube was pulled and she now has a PEG. Rad was delayed because she had a bleeding problem that put her back in hospital (blood vessel at surgery site ruptured). Rad now starts next Wed. They say she's in the "honeymoon" phase right now, she's feeling halfway decent & even getting a little food down (in addition to the PEG feedings). Doc says in a couple weeks she'll be feeling like she was hit by a mack truck - sure not looking forward to it. Interesting comment about codiene & oxycodone being 'medium' pain relievers. Knowing her med resistence I'll be prepared to ask for stronger pain meds. I know the mouth pain is supposed to start around week 3 - when does the fatigue set in?
Bonnie

I think everyone starts to feel the effects of the Rad in week 3. I could smell my throat burning in week 2. RO said I shouldn't have smelled anything but I did. I know my body. After the effects start she will enter a very dark, nasty tunnel. She will come out but it will seem like an eternity. She will need you more than ever while she traveling through that tunnel.

My husband was just talking about the way time works during treatment. He said when he was going through the treatment, time moved so slowly. It seemed like treatment took forever. Now, looking back (4 months after treatment was finished), it seems like such a short investment of time to get your life back. To save your life, more accurately. It is true of so many things, I know, but the treatment will only seem like forever while it is happening. Once it is done and you start recovering, the memories will blur a little around the edges and your mind will forget how horrible it was.

Bonnie,

Pain, nausea and constipation will have the effect of slowing her days sometimes to a crawl. She won't start to experience these systoms as I said until around the 3rd week. Sleep will help pass the time but I couldn't sleep that much. I watched every Discovery channel show, every History channel show, every Judge whoever show, every news broadcast until I was seeing reruns!! I REALLY appreciated the fact that it is a mid term election year because I got to be bombared by all those STUPID elect me or don't elect them commercials. I think they contributed to my nausea and overall ill health.

Anemone,

Tell us(me) more about your husbands DX, TX and recovery. I am 2 months out of TX and I would like to know what to expect if our Tx was similar.