Hello all. I posted month ago to introduce. Well, hubby has now had surgery. Very small lesion on base of tongue & one tonsil removed along with neck dissection. Is now a T1N2AMO (originally diagnosed as T2N2BMO). 23 nodes taken & pathology results show cancer free in all. Yay!! No extracapsilary involvement, so very good news indeed. So now I'm.curious as to what u all think whether radiation/chemo should be done or not. Have read lots of studies that say not necessary, most recently a 2013 study done by Mayo Clinic that suggests not necessary for certain types of which hubby fits profile perfectly (HPV 16+).

I would be so interested to hear others thoughts! Thanks so much. Oh, meeting with tumor board wednesday & we meet with our ENT surgeon thursday. Being treated at a comprehensive cancee care hospital.

Congrats on getting through surgery.

I am not understanding hubby's staging. T1 is tumour size. N2 would say metasis to 2 nodes locally. So if there is no cancer in any nodes - why the N2?

This is not just a correctness question - it is paramount to what people will suggest to you for future treatment.

Thanks.

Donna

Personally, I would do chemo and radiation to get any microscopic cancer, which may not be visible by any scans, and can spread elsewhere, even outside the lumps, to distant organs. That's one study, I'm sure there are others that differ, and this one may not work for all. Maybe see what the NCCN guidelines are, but not sure how being restaged at sT1N2aMO, which still shows involvement. Good luck.

Sorry. My lingo is still not up to par. He was originally staged T1N2BMO. I guess now he's nothing. Primary tumor on base of base of tongue removed & smaller than thought pre-surgery & tumor in lymph node removed. 23 other nodes removed showed no cancer. Clear margins after surgery. Does that clear it up?? Thanks for responding. Look forward to hearing your thoughts re radiation/chemo or not. We value all of your thoughts!

And thank you, Donna. He got through surgery extremely well, all things considered.

Hi Timm,

Before my surgery, my team said if the cancer was contained as your husbands was, I would not need chemo but would be getting rads. I was Dx'd Tx (unknown primary) N2b MO Stage IV HPV+. I had two very large cancerous nodes and they broke out so chemo/rads it was.


I was treated at a CCC as well (Johns Hopkins). The tumor board and team will make the final call. Based on what you posted it seems he would just get rads or nothing at all.

However, I have a friend who went through this (treated at JH as well - same RO and surgeon! - small world eh?) Tx'd BOT HPV+ SCC. He had just surgery. Unfortunately it came back with a vengeance within a year. He ended up getting chemo/rads.

Your husbands Dx bodes well to respond to treatment if they go that route.

Positive thoughts and prayers

"T"

Thanks for clearing that up. If it was just one lymph node involved - it would be T1 N1 M0 - T is for tumour size, N is for Node involvement and M is for distant metasis.

In my humble opinion, I would get the radiation AND the concurrent chemo. The chemo offered will likely be Cisplatin which isn't like the well known chemo (no hair loss), but its job is to enhance the efficacy of the radiation.

This is an aggressive cancer and needs to be responded to in kind. Again, IMHO (and I am not a doctor - only a patient), I would hit it as hard as I can tolerate. Recurrances are not fun.

Good luck with your decisions - keep us posted. You will no doubt hear many opinions about this, take them all into consideration.

Donna

IMHO he should not have had ANY surgery BUT he should have had and probably still needs to have concurrent chemo/rad and that's the reason he shouldn't have had the surgery since the chemo/rad is what will kill the cancer.

Right... I was thinking the same thing but what is done is done... However this particular type of oral cancer HPV+ - if it is tonsillary they do often remove the tonsils, but ALWAYS radiation and chemo is the primary treatment. I would do it - definitely.

Me too. Those were my thoughts as well. You get one chance with this. Chemo and rads....take no chances.

Hi Timm

Glad to hear that there were no nasty surprises with your husbands surgery. And in the scheme of things, there was some quite good news with the staging being downgraded to a less severe level (all too often it is the other way around).

It is often difficult to interpret what we are told as it is not easy to remember all those numbers when one is not even sure what they all mean. You described the tumour and nodal involvement as below which I have taken to be the latest and most accurate description of your husbands diagnosis.

[quote]Primary tumor on base of base of tongue removed & smaller than thought pre-surgery & tumor in lymph node removed. 23 other nodes removed showed no cancer. Clear margins after surgery.[/quote]

This reads to me that there was nodal involvement ("tumor in lymph node removed") but had not spread very far (" 23 other nodes removed showed no cancer"). If this is correct there would be a number after the "N" and likely a 1???

The National Comprehensive Cancer Guidelines for your grade of oropharyngeal cancer recommends surgery as one of the options (radiation being the other). My read on this is that chemoradiation is NOT recommended for low level tumours (T1) but have attached a link to the guidelines for you to check for yourself (or use it as a discussion point with your oncologist). I think if the grade of tumour is higher, or nodal involvement more extensive, chemo plus radiation is recommmended

http://www.nccn.org/professionals/physician_gls/pdf/head-and-neck.pdf

You and your healthcare team have selected the surgery option and the next recommended step where there is "one positive node with no adverse features" (which in your case refers to the tumour that was removed from the lymph node which had no extracapsular spread) is to "consider radiation".

I would hope your team could quote this stuff in their sleep so for them it might be fairly simple. However, they need to bring you up to speed and help you to make decisions that you are confident with so you probably need to be very clear on how big your husband's tumour was, confirm that the nodal involvement was minimal and ask questions around what other options there might be. Get the doctor to write your husband's staging on a piece of paper if need be (but remember sometimes it changes as more information is uncovered).

Well done on picking up a BOT cancer at such an early stage! All too often these things have progressed to T3-4 before anyone notices anything wrong and as you can appreciate, makes it much harder to treat and leaves more damage behind than a smaller tumour such as a T1 which has better outcomes than the more advanced tumours.

I have seen some T1 patients have chemoradiation, just radiation, including myself, and it depends on the doctor, institution, tumor size, thickness, area of primary, nodal involvement, patient. NCCN is just a guideline.

BOT can be persistent tumor, more difficult to treat, due to the deep musculature, lymphatics in the area for tumor to spread, go deeper in the BOT. Was chemoradiation offered or just a question?

I have a long history with T1 tonsil confirmed by biopsy, possibly BOT, valeculla involvement by PET, but not found in tissue sample. Was scheduled for Induction Chemo, followed by concurrent chemo radiation, but reaction to IC prevented that. 5 days IC killed the tonsil cancer, but it returned, as I later read would happen in less than a year. Anyway, had 4 more recurrences after that went into my neck muscle, skin, outside of primary and lymphs somehow to be "free form" or "roaming cancer" in my neck that can spread anywhere. Had positive margins from one surgery, Perineural and lymphovasvular invasion, so cancer can travel anywhere along the blood and veins lines too, and needed a number of treatments, radiation, surgeries. i have been continuously in some form of CRT treatment, recovery, surgery, dental, HBO, transfusions for 3.5 years for an original T1N2bMO.

Thank you all so much for taking the time to respond. To add to frustration, our appointment with our ENT surgeon to discuss our plan after he met with tumor board did not happen. Doc had flight delays. Set us up with resident who clearly did not know what was going on & we spent 20 mins telling him & found out by asking him that tumor board did not meet & to top it off he told us margins were not clear, which our doc said they were so told boy wonder resident to check his computer screen again & he verified we were right. Grrrrrrrr...took every ounce of my will power not to jump over table at him. So now we wait again for this life alterring appointment....2 weeks but hopefully less. Sadly, this incident puts a sour taste in my mouth & not totally confident anymore. This is a comprehensive well respected cancer clinic. Ah well. I suppose it happens everywhere. Could also look at the bright side: clearly docs do not have any sense of urgency regarding him so that could be good. Thank you all again. Now we have time to hear others opinions on this.

I was given the option between surgery with at a minimum radiation (possibly with chemo) and concurrent chemo and radiation.

I saw 4 different cancer centers before deciding on my treatment and cancer center. A general thought that was communicated to me was that having 2 modalities of treatment was superior to 3 modalities with respect to long term effects and complications. If the doctors could keep it to 2, that would be an ideal situation.

I ended up going with chemoradiation as the surgeon ordered a PET and judged that he may have issues with clean margins on the primary and based on that they thought there was a good chance I would still need chemo and radiation. If the imaging and presentation had indicated a low chance of adverse features and bad margins than I may have ended up on the surgery + radiation route.

I was also told that the long term effects and complications of radiation + chemo were worse than surgery + radiation.

It sounds like the surgery went well and there were no adverse features, so I would think that radiation only is a candidate for treatment (which is supported by the NCCN Head and neck cancer guidelines).

Just been diagnosed stage IVA as well (T1-2,N2b,M0) and also think that you're a great candidate for surgery & rads only (this is what I'm looking at having too).

I think that where it allows, it's better to surgically remove everything and then have a lower dose of radiation. It's faster, less damaging & has a quicker recovery time. I personally also feel better at the idea of the tumor/mets no longer being there.

I hope this helps you in your decision-making. Keep us posted.

I had 70Gy IMRT radiation alone, and it did not kill the cancer, it recurred. To eradicate SCCC you need more than 50Gy, but more like 70Gy or higher. especially those areas difficult to treat, likely to recur like BOT. It is shown in studies that by adding chemo improves outcome up to 20 present or so, depending on the type of chemo or tagged therapy. NCCN is just a guideline not set in stone. and each doctor, patient is different. All I can say is you do not want a recurrence, and should do it right the first time.