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.