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.