Have any of you come across any relationship between a high ANA (antinuclear antibody) titre and SCC? Just asking as mine came back as 1:1280. It's a connective tissue marker but seems to also have a link to SCC?

Just wanted to say that my husband did not have surgery either and we are out 1.5 years now. We had induction chemo and then chemo and rads.
Kathy

Thanks Kathy. How big were his nodes? I've got one which is around 4.5-5cm and sticks out of my neck so we don't want to leave it there.

If he had big nodes, did they go down after treatment? They might also be removing it to do a biopsy on it (this is all dependent on what is found after the BOT biopsy).

Cheers, Mel.

Hi again everyone,

Well unfortunately it's been confirmed that I'm a member of the club. Base of Tongue SCC - Looking like T1 or small T2, N2b, M0 which I believe is Stage IVA. We're looking at surgery on the tongue and a selective neck dissection II-IV followed by radiation about a month later - 6 weeks, 5 times a week - Aarrrrggghhhhhh!

To be honest, I was expecting it so it didn't come as that much of a shock but I'm sure as hell not looking forward to it all. I welcome your advice with open arms.

Mel.

Hi Melissa, I am sorry that this has been confirmed.
A BOT tumour is not usually treated with surgery. It is usually treated with curative radiotherapy and chemotherapy.
Usually 7 weeks of radiotherapy with concurrent chemo.
Your tumour is more than likely HPV positive which does infer a survivor benefit as these tumours respond much more readily to radiation and chemo.
Has your treatment plan been decided by the Head and neck tumour team at Auckland City Hospital?
Where are you going to be treated? There are better outcomes when one is treated by a whole team at a CCC - which Auckland hospital is. Research has proven this.
Others will come Along shortly with lots of advice on nutrition among other things.
I wish you well, come here often,
Tammy

sorry to hear the bad news, thought id share what i learnt during my dads treatment,he had very similar,and did 7 wks 5 days p/wk of the same treatment youve mentioned above. he had a peg inserted a week before starting,he continued to eat until he could no longer get anything down due to swelling.he did continue to drink,even if it was only a couple of sips of water each day ,this was for him to remember how to swallow,eventually he could bareley use a straw but did it as it was still a bit of normality to him,if you have a peg then that helps with weight and nutrition which is a very important factor.and in his case kept his weight loss to a very minimum,i think it was 2 kg over the 7 wks that he lost,he followed instructions right down to the bottom line,he used his mouth wash religiously and lots of bed rest and used his creams all day long on his face and neck to keep his skin moisturised from the radiation,and believe me it worked he ended up with skin as soft as a baby,lucky for dad he had no sickness at all.l hope this helps a little and wish you luck with everything you have ahead of you,and lm sure you will have plenty of advise to come from others...

My node was very large but the team decided to leave it. In some ways it could act as a barometer of what was happening to my BOT tumor. They could always take it later if necessary. I had one on the opposite side taken out PT cuz they didn't like the way it looked on the scans. The layman description of what they found was "radiation damage". Aside from the biopsy, that was the only surgery I had. The big one responded and is still in my neck.

I'm going to reiterate what the people here are saying if it is an HPV+ BOT cancer it responds very well to radiation and chemo. Surgery is usually not offered. If it is Non HPV then surgery is the primary treatment. Most BOT cancers are HPV+. I know you are in New Zealand, please do make sure you are being treated at a comprehensive cancer center of some sort. A place that sees and does cancer all the time. Perhaps there is a reason they are choosing to operate - do find out why. Best of luck and unfortunately - welcome. ;o)

Sorry to hear.

As mentioned, the usual HPV postive treatment is with Chemoradiation, maybe induction chemo prior, which preserves the structures, and swallowing, and HPV is more responsive, has better outcome, but sometimes not. This was my recommended treated with surgery as a last resort. Surgery was not recommended by my ENT who said it would be too debilitative, and would not know the extent of the tumor until he did surgery, and may be more extensive,

Surgery followed by radiation, is an option for early stage T1,T2, according to NCCN guidelines for oropharyngeal cancer, and is just that, a guideline not set in stone. Each doctor, hospital, and patient is different. In the same NCCN chart, Chemoradiation is recommended for T2N1 tumors, which can be close to a T1 in size. I had 70Gy IMRT Radiation Alone, and that did not work, and cancer came back 6 months later. In order to kill SCCOPC it has to be over 5OGy, with more like 70-74Gy to the primary, especially BOT. I had two more surgeries alone, at different intervals, and that did not work either, and had two more recurrences following the, and I'm mostly likly HPV associated, although never tested.

Adding chemo to radiation improves radiation up to 20 or 30 present, based on type of chemo or targeted therapy used, and has better outcome than radiation alone. BOT is more difficult to treat, due to the deep musculature, lymphatics to the area, and has a higher rate of recurrences. You do not want a recurrence, which is more difficult to treat, possibly with different outcome or may not be treatable later on.

As far as leaving in a cancerous lymph node to monitor a primary, I wouldn't. It needs to be taken out or treated like the primary, before it spreads, ECE, metastasizes further, attaches to structures or carotid artery.

There are other treatment options, possibly used in conjunction with radiation, chemo, like Brachytherapy as a boost, followed by Chrmoradiation, is very good for BOT, and seen a recent positive article, Intraoral microscopic laser surgery, which doesn't effect future surgery or radiation, TORS, transorl robotic surgery, instead of the split lip method.

I would see about a 2nd opinion also. You may even stick with the first proposal, but if you don't get a different opinion, some wish they did later on. Good luck with everything.

Thanks for your input & advice. Yes my case has been discussed by the team at Akld Hospital (a CCC). I was advised of the two options, one being no surgery with chemo & radiation only and the other being surgery with radiation only. The tumor in my tongue is only small - a T1 or small T2 - but my node is about 4-5cm with other nodal involvement. They're confident that they can get all the tumor out of my tongue with no loss of function once healed or reconstruction necessary and this is why I've opted for the surgery. I feel much better knowing that all the cancer can be removed and then having radiation treatment for any micro metastasis (on both sides of my neck).
It also seems that if I went with the chemo & rad route first with no surgery that having surgery after that is a more difficult thing to do. Rads will be 30x 60Gy.

I guess I'll be monitoring the other forum steams of treatment, symptoms, etc more closely now. I'm confident I can kick it's butt...