Got really good clear margins on the BOT tumor but unfortunately 9 of the 67 nodes were "affected" and a good number of these also had extracapsular extension.

Originally the plan was just for radiation, but now with this large level of nodal involvement and the extension into the surrounding tissues they're recommending chemo as well. I'm also booked in to have a PET scan next week to double check that the CT and Chest X-Ray are correct in their assumption that there is no further spread elsewhere.

The surgeon told me that it's normal to have 1-2, maybe 3 nodes affected but to have 9 is pretty big, and also to have the surrounding tissues invaded this all now has me worried.

I know that until we have the results I just need to be patient and wait but have any of you had such large nodal involvement or lots of extracapsular involvement - what did it mean for you? Good or bad, I'd like to hear please.

Thanks,
Mel.

Sorry for your troubles. It's not good to have ECE, and so many nodes involved, which increases the chance of recurrence, distant metastases. The good part is the lymphs nodes were removed, but there are so many lymphs in the H&N, like 300, they probably did not get all being most are microscopic, so Chemoradiation is needed to fully eradicate any cancer which may still be there microscopically, and HPV is very responsive to this treatment, and or another type of treatment too. You mention surrounding tissue invaded, was this found or saying is a possibility.

I had 70Gy to the primary, 62Gy to the neck, and still had recurrences. They have to use more than 50Gy to kill SCC. I see yours is 60Gy, I guess to the primary, and would assume a lower dose is for the cervical neck, maybe 54Gy, which seems some are doing in clinical trials, and wonder wonder if this is enough with ECE, which dosage is usually increased, and outside clinical trials most dosage is 66-70Gy. Maybe you can ask about this and or a 2nd opinion.

Good luck.

That's the one reason shying away from neck dissections can be scary - stuff like this should be judged on a case by case scenario rather than just slapping standard practice into play. There's always that 1 in 100 that presents as unusual. So glad they removed a lot of nodes, and yes chemo and rads is par for the course. Sorry it was so involved but since the virus does respond well to this form of treatment and since you had surgery therefore - less cancer is now present, therefore hopefully if there are any stragglers left over rads and chemo will do its job well. Hugs!

Hi Mel,

Don't worry so much. You sound similar to my case. I had a primary at BOT and regional metastatic lymph nodes, how many I never new the exact count but it must have been several just the way they say multiple.

Good you are HPV+ as current chemo-radio therapies do work well on these cancers.

I had induction chemotherapy. Used a combination of cisplatin, taxotere, and 5FU. These three together offer the biggest whopper of a chemo dose there is and you will hurt.
However, it is VERY effective at treating the cancer. My final report's impression stated that there was complete or near complete resolution meaning all the cancer had been dissolved.

There are three rounds. Even a few days after round one I noticed a physical reduction in the neck nodes. Second and third rounds also I saw more reduction. By end of third round there was zero indication of any swollen nodes.

After the induction chemo, I had current chemo-radiation therapy which consisted of 35 (2gy) sessions for a total of 70 grays of radiation. I also had 6 weeks of chemo - carboplatin delivered at a low dose but effective as a radio-synthesizer for the radiation.

I am just 10 days post tx and I am feeling amazingly well so hang in there.

Also effective is brachytherapy as a boost, followed by Chemooradiation.

Thanks again everyone.

Paul - Yes there was ECE found. The 60Gy I mentioned was the inital idea with the radiation only treatment. I'm unsure what the new plan is and have my first oncology appointment on the 24th June. It will be to both sides of the neck though since the tongue drains bilaterally. I would now imagine it would be a nigher dose since it's more extensive than first thought.

Cheryl - Yes I'm so glad I had surgery first. It just felt like the right thing to do to surgically remove the cancer and then treat any remnants.

Don - So glad you're out the other end of treatment and are feeling so well. It's lovely to hear stories like this when I'm at the start of the journey.

Thanks Paul.

Hi, Meli
on a positive note, a small primary tumor is a good prognostic sign, as is the fact that your surgeon achieved clear margins. Your emergency trach should hopefully have put all of the drama behind you - so full steam ahead on your treatment!
Maria

Hi Maria
Yes, full steam ahead indeed.

Hi Meli,

My wife also had 3 lymph nodes come up as cancerous with one of them showing ECE.

Unfortunately, ECE is not something that should be taken lightly and more aggressive treatment (chemoradiation) is usually recommended.

Best of luck with your ongoing journey and I wish you all the best moving forward.

p.s. Which part of NZ are you receiving treatment in?

Meli, although there is some similarity in our situations, yours is more intense (I also had an emergency trache after my ND, but no ECE and no chemo). It looks to me as though you're getting excellent care, and your attitude is terrific.

I wish you all the best. Please keep us posted and ask any questions you can think of. You're far away physically, but you're part of our family.

Hi Meli,

If it makes you feel any better regarding the chemo, I found the chemo was the easiest part of the treatment. When the doctors originally told me I would need chemo, I remember bursting into tears and thinking it was the worst news ever. However, they gave me weekly smaller doses of cisplatin, and i found the side effects were pretty well managed - nothing compared to the radiation. I didn't lose my hair and only had a couple bouts with the nausea (they give you very good medicine to keep the nausea at bay). Hopefully that provides you with just a bit of comfort - I was also diagnosed young and have bounced back pretty well 1 and a half years out from treatment and back to living my life!

Thanks Jay. I'm in Auckland and am being looked after at the Auckland Hospital by the Head & Neck cancer team. Just read your other post... I'm really glad that your wife is doing great.

David thanks for your kind words. It's great to have everyone here to ask questions of.

Emily that's great to hear. I'm also having 30 rad treatments but am only having 3 rounds of chemo (each 3 weeks apart) but I haven't asked what the dose is?