My fiance was given a partial glossectomy with a selective neck dissection with only 1 cancerous node removed. It seems that most of you have had partial dissections with many more nodes removed. Can anyone tell me why the doctors would choose to only remove one lymph node? We had such a scare after his surgery, as they never inserted a feeding tube and the same day out of surgery he was given soft foods to eat. The second day at home the surgical area where the tumor was removed on the base of his tongue split open, he then lost so much blood, had to be resusitated and helicopted to another hospital for a second emergency surgery. After all that we've been through I'm just now getting over that and starting to question everything that has happend over the last week.

Do you mean they only removed one node altogether and it was cancerous? Or did they remove more nodes and only one was cancerous?

For what it's worth, I have read that there is some research on sentinal node identification and removal for oral cancer (it is already being done for breast cancer), so even if they only removed one node, there might be some good reason for it (although I would think if it had been identified as a sentinal node and was cancerous they would go on and remove others, as they do in breast cancer). I would definitely ask more questions about what specifically they did and why, though.

Nelie

You are clearly not being treated in a comprehensive cancer center. You need to get some second opinions NOW. If there is disease in the lymph system, someone should be doing some PET scans of the body to see that this is still local/regional and hasn't gone farther. If their intent was to do a single sentinel node biopsy, and they found cancer in it, he should be on the schedule for a more extensive neck dissection immediatley to remove the nodes further down the chain. While your posting leaves many facts out, from what you have put up, I wouldn't have much confidence in your current team. (Actually it sounds like you do not have a "team" at all, as they would have come at this from different and compimentary angles.) I too would be asking questions and getting an additional opinion from a multidiciplinary team that includes a radiation oncologist and a chemo person. You don't mention what type of doctor got you this far into things with so much undone or unanswered. You only have one shot at this when it is in the lymph system. You need to be on this immediately.

Brian, you are exactly right. My first posting was back in February when he was first diagnosed with a stage 4, 5 x 6 scc on the right base of his tongue, which had spread to (at that time we thought more than one)lymph nodes on the right side of his neck. I live outside of Chicago and he leaves in Memphis with his son and due to timing, opted to stay and be treated at the U of TN Cancer Center in Memphis. However; three doctors "the team", an oncologist, radiation doctor and surgeon decided that the initial surgery would be too evasive and had him to go on and get his teeth removed (he ended up only having lower teeth extracted)to prepare for radiation. Because things so agressive we asked if anything else could be done while waiting for healing so they started induction chemo. Three rounds of cisplatin, 5fu and docetaxal; after which the scans showed that there was still one tumor in his neck; however, the tumor at the base of his tongue had reduced approximately 60%. The surgeon apparently saw scans and thought it was more like 70 -75% and decided that now he could go in and remove it and that he wouldn't lose a salivary gland and have other such issues as he would with radiation and if he gets it all then he won't have to have a full dose of radiation. Well, as such, he went in for the first surgery and we were told that the doctor didn't have enough space to get clear margins and after the pathology report 90% of the tumor removed was cancerous...which we didn't find out until after his second emergency surgery which through him into a very deep depression. He went back to see the oncologist on Thursday who advised him that he wouldn't have any more life-threatening situations and that he should continue with them and do the full 7 weeks of radiation, the couple days of chemo won't be the same as before, and that he could start on Monday, 6/12; however, the radiation doctor's nurse said that it would probably be another week since they are still planning. I was concerned first, because I wasn't sure of how long you're suppose to wait to begin radiation, why only remove the one node and not check others and I didn't trust anything from the surgeon after he explicity explained to me right after the second surgery that "he had no idea of why he was bleeding the way he did, but we'll keep him in ICU to make sure it doesn't happen again." I've gotten him to at least agree to coming to Chicago this week for second opinions (appointments scheduled all week), but even when he signed the release of records form he still noted that he was leaning towards staying in Memphis to complete his treatment due to various financial obligations. I'm so confused, lost and want the best for him and I don't believe that he needs to finish where he is. Am I being too insistent or what?

Neli, no they removed only one lymph node, which was cancerous and did not remove anything else.

I have not heard of anyone just removing one node, especially for a stage IV. From the majority of the research I have read, they should have at the very least removed all the nodes in levels 1-3. Do you know what size the node was and what level it was found at? My understanding is that once it reaches the nodes, it can spread to other parts of the body, which is why they like to remove those nodes even if there is just micro-metatsis.

I understand he may have some financial obligations, but at the very least, I hope that the second opinions will encourage him to look for more information on his situation than what his current team is providing him.

You are not being too insistent, I think you are being a supportive advocate and asking perfectly reasonable questions. It doesn't sound like you're getting good answers from his doctors and you should not be satisfied with that.

He needs a second opinion on the treatment plan especially about the cancerous lymph nodes and the lack of clean margins on the tumor removal. Originally our doctor thought Jack only had 1 cancerous node but during surgery they found 7 so they removed all 80 nodes in the 1-5 levels for testing. It's pretty standard to continue to check the rest of the chain of lymph nodes to see if they can get clean margins so I don't understand what they're telling you. I too have read that at the minimum levels 1-3 should have been checked in this situation.

It's so easy to second guess all our decisions but please don't let the doctors make you feel that you are doing something wrong here. I've learned to trust my gut instinct and if they can't explain things in a way that makes sense to you then go see someone else. You've already got the appointments set up next week and if the doctors in Chicago agree with the plan then he can make a decision on where to have it carried out.

You need peace of mind that everything is being done that can be and it doesn't sound like you're getting it where you are. You have nothing to lose by getting a second opinion and potentially a great deal to gain.

Get him to Chicago any way you can.
Regards JoAnne

The fact that they are taking a week for planning should not be a concern. Perhaps they are going to do IMRT and there is programming to accomplish... There are still a lot of unknowns, though your post makes it seem like there was more of a plan at a good facility than your first post eluded to. Having him come to Chicago and change treatment teams when you do not have 100% of the information and are not communicating directly with the doctors to ask the questions of them, may not be the best thing unless it can happen during the week he is waiting anyway. He may not be the type to ask many questions himself and just trusts his treatment team. You perhaps should ask to speak with the doctors directly yourself and get all your questions answered by them before jumping ship.

We are doing exactly that; having him come to Chicago while he is waiting for his treatment there; however, we need to find answers to certain questions and if a second opinion warrants the same type of treatment then fine. Our biggest concern is trying to figure out why there has only been mention of one node being removed and the discussion never coming up during any consultations, especially when we were reviewing his first pathology report from back in March and it stated metastasis to two nodes. We just want to know why only one node removal and the reasoning for such.

Those questions should be answered. I would be on the phone to the doctor to find out, and not be in the dark about this. It does seem highly unusual.

I'm curious to know if anyone knows about some type of throat lozenges that is supposed to be good for you while being treated with chemo/radiation, but its not sold in the USA......? I read about it from someone on this site but can't seem to find it.

The lozenges (there is also a mouth rinse) are called Difflam and contain benzydamine HCl, which has been shown in a number of clinical trials to be best for reducing the severity and duration of radiation and chemo-induced mucositis, It is, however, not yet approved by FDA although it has been in over 37 countries according to our dental oncologst (who participated in a USA trials and said it does work) -- he is irritated at the delay in approval since it is a topical NSAID, is not ingested, and relieves a lot of suffering. Have to assume FDA has some concerns, maybe they are super-careful now about new NSAIDs.

However, that is beside the point. It is available by prescription as a mouth rinse in Canada (as Tantum) and in UK, Europe, Australia and a number of other countries over-the-counter as a mouth rinse called Difflam. The lozenges are not available in UK, as my husband found out when he visited home in May, but are available in Australia and NZ. An Aussie friend brought him some on a visit in December and Barry thought they really helped his throat heal.

Gail