Hi everyone,

I'm a 39 year old, married mum of two (3 & 5yrs) living down in New Zealand. I'm hoping this is nothing but it's lovely to have someone else to share my worries with who understands what I'm going through at this early non-diagnosed stage.

I've got an enlarged right lymph node, about 4.5cm. Had what I thought was a swollen lymph node in this area several years ago and had an ultrasound and was told it was a cyst and to come back if it got bigger or caused any problems.

Noticed the current large swelling (which I think is in a slightly different place) about 6-12 months ago and presumed it was the cyst again. Mentioned it to my PCP in April this year and she sent me for another ultrasound. I completely expected the next step to be just a fluid aspiration. Instead I got sent to the emergency ward at the hospital two days later - chest x-ray (clear), FNA of the node and CT scan.

CT showed an enlarged lymph node and several other rounded nodes on the same side. Biopsy showed some strange results but most of all was that it contained epithelial cells and was positive for panCK and Bcl-2. Got referred to a Head and Neck surgeon.

Met with the surgeon last Thursday (16 May) who stuck a camera up my nose and down my throat and noticed "asymmetry in the base of my tongue with fullness in the region of the lingual tonsil extending to the vallecula without any obvious ulceration".

He's concerned that this could be a BOT cancer and has me booked in for a pharangoscopy (camera down my throat) and tongue biopsy next Tuesday (28th May) under general anaesthetic. We're having another consultation with him on the Friday 31st to plan further treatment and then I'm booked in for surgery to have the node removed (+ anything else needed) on Wednesday 5th June. They're going to biopsy the "mass" at the same time while I'm still on the table and if it's malignant he's advised that a neck dissection would be performed at he same time.

I'm still hoping that it turns out to be nothing but they also seem to be preparing me for bad news. Is this normal?

What can you all tell me about your experiences 'before' you were diagnosed? I feel fine and if it wasn't for this bump sticking out of my neck I'd be none the wiser.

Thanks for your help & support & for listening to my rant. My friends & family are great and very supportive but everyone keeps saying "it'll be alright" and it's nice to have someone to talk to in case it's not alright.

Cheerio from NZ,
Mel.

I would get another opinion before I agreed to a ND even if the node biopsy is cancer. Lots of if's but IF it is BOT or Tonsil Primary with mets to a node or 2 you have a good chance that HPV is the culprit and IF that's the case then the "standard" Tx calls for radiation and chemo and IF it is HPV related then your Tx responds much better to the cancer than IF it's not HPV related. Eight years ago I had 2 cancer docs wanting to do a ND and then Moffitt, a leading cancer center here in the US said NO NEED for the ND as the TX most likely will kill the cancer eliminating the need for unnecessary surgery. I went with the best and I'm glad I avoided that ND.

Welcome to OCF! Im hoping this turns out to be nothing serious! You are young and with 2 young children cancer is the last thing that you should have to be concerned with.

Im hoping you do not have base of tongue cancer (BOT). If you would then you will want to be treated at the best medical establishment specializing in cancer that you can find. Just remember, surgeons cut and radiation doctors will recommend radiation. Each specialist will always tell you their way is the bast. Here in the US we have some top comprehensive cancer centers where all the specialists get together and discuss each individual case as a team, they meet and develop a treatment plan that has the patients best interest in mind instead of a single doctor recommending their own expertise. If you have something like that available where you are then that usually is the very best place to get treated. We do have a few members from your area so maybe they will be able to help you with this.

If it would be cancerous, people will offer their assistance. Write down every single person's name and number and tell them when the time comes you will let them know what they can do. With having 2 young children something so simple as taking the kids out to the playground, a playdate afternoon or taking them to the movies could be very helpful. There are all kinds of small things that you could need help with if you would need cancer treatments. Many small things add up like picking up prescriptions from the pharmacy, grocery shopping, laundry, walking the dog, taking out the trash, cooking meals for the family, etc. Thats why every single person can be of some help when the time comes. But thats getting way ahead of everything. Lets just hope it turns out to be nothing serious.

Please keep us posted. Best wishes!!

My CCC, Mt Sinai, plan of action for stage 4 tonsil and bot was to do 3 cycles of induction chemo first, IC, followed by chemoradiation for 7 weeks, and surgery as a last resort, also called salvage surgery. I believe MSKCC, usually like to do surgery first, not afterwards, based on an a discussion video I seen by Dr Lee, but that could be dated, and never consulted there myself, in person. Each case is different, HPV, non HPV, the TNM grading like the tumor size, location of tumor, number/size of lymph nodes, and so is the patients request taken into consideration, even doctors are different, and probably most do well with just CRT.

Surgery is also more difficult after radiation due to inflammation, necrosis, and usually need longer healing time, and may have more complications, and some do a planned neck dissection after CRT, based on TN, usually before 6 weeks, wether or not cancer is present, which shows better outcome.

In retrospect, I wish I had a neck dissection first. I never made it past the induction phase in 2009, had to stop treatment for over a year at stage 4, which is the cause of all my recurrences. Good luck.

Hello Melissa,
We live in Whangarei. My husband Kris was treated at Auckland City Hospital . This is the tertiary referral hospital for our region,
Are you being treated at Auckland City Hospital? You should be referred to the Head and Neck tumour board that meets Friday mornings to discuss all head and neck patients prior to treatment. This should be done IF you get a positive cancer diagnosis
Are you having the biopsy done privately at a private hospital?
I would not let anyone do further surgery without the collective wisdom of the H&N tumour board . This is a team of medical specialists. Surgeons, dentists, chemo oncologists, radiation oncologists, dieticians, speech therapists. Etc. they review the pathology and all relevant scans before coming up with the best treatment plan for you.
We were told that not many need a neck dissection these days as usually radiation takes care of the cancerous nodes.
I think you are wise to have the biopsy done quickly in the private system, but do not let them do anything further until you have been seen at the Head and Neck clinic.
Of course you still need to get the biopsy done. This is not cancer until the pathology from a biopsy says it is.
Please feel free to send me a Personal Message. If you do need guidance through this at ACH I am very willing to help.
By the way, I am not ruling out any surgery at the Mercy hospital , Kris eventually had his surgery done there but only after the Tumour board advised us he needed the surgery.
Wishing you well,
Tammy

Wow, thanks everyone. Definitely some extra stuff to think about. I really appreciate you sharing your wisdom and experiences with me.

If it does turn out to be cancer I'd definitely want to treat it as viciously as possible. David, you didn't have any surgery and this obviously worked really well for you but Paul you wish you had the surgery first. I should find out the results from the tongue biopsy next week which will give us an idea whether this lymph node is related to it or not and then we can move forward from there.

It is what it is... just need to find out now and deal with it as best we can.

Thanks again.

I only wish I had surgery first because I was not able to do the real curative treatment, besides surgery, which was radiation, with chemo as a radiosensitizer, chemoradiation, and had 4 recurrences since. I made a mistake, who knew, of having induction chemo, which resulted in a severe, almost deadly reaction to it, and rest of my treatments were suspended. If I had chemoradiation, initially, with with success, I would probally be happy without surgery lol.

Chased up the surgeon today as he was reviewing the CT scan with the radiologist and she is also "suspicious of the right base of tongue area". Biopsy is still scheduled for next Tuesday (28th) and they've brought forward the neck surgery if there's no tumour to the Wednesday or Thursday (29th/30th). Not sure what that means if they do find something but hoping it doesn't come to that.

Thanks Paul. Tammy I may contact you if need be and really appreciate the offer.
Thanks also to David & Christine.

Let us know how that goes next week. We pray that all goes well and that the results are clear. We understand what the next few weeks will be like for you. Until you get some definitive information, keep busy and don't let any worries steal your days from you. Your children should help keep your mind on other things. Know we are all here for you. Hugs.

Donna

Good luck next week... hopefully it's nothing but best to catch it early if it is.

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...

Hi, Meli -
what is your smoking status?
Maria

Where are you going to be treated Melissa?
Have you been seen by the oncology dentist?
Did you talk to the oncology Dietician? Have you discussed a PEG feeding tube with the team? Make sure you eat up a storm between now and the radiation starting. You need to increase your caloric intake, most undergoing this lose about 20kgs. Enjoy the taste of everything you most enjoy as your taste buds will take a hit for quite some time.
Gather a support team of friends and family to help out. To drive you to appointments, to help with the kids and general household chores, as well as to just be there for you.
Look after yourself,
Tammy

Hi Maria - non smoker all my life
Hi Tammy - haven't progressed to that next round of meetings yet but will be reading thru lots of these forums and making notes and lists of questions.

Good, glad you are a never smoker. Surgery followed by radiation may allow a smaller radiation dose than if it were the primary modality. If they see anything that worries them during / following surgery (e.g., not getting clear margins) they would have the option of adding chemo to the radiation. The small tumor size, the fact that it is HPV-related, and your non-smoker status are all very encouraging.
Very best wishes to you.
Maria

Best of luck my dear!!!