It seems like most everyone has the neck dissection at the outset. Cheryld - interested in the decision for the neck dissection in Toronto. I'm going to talk to the Doctor about it, if I can ever get the CT scan booked. I'm still waiting for a date for it.

I'll report more when I have more to say. Thanks all for the kind words.

Lisa

Quick update from Canada - Had a CT scan of my neck which showed three larger nodes - one over 1.6cm and the other two just under.

So, original partial glossectomy was cancelled and replaced with partial glossectomy and neck dissection for March 25, 2014. I'm just as happy to have the potentially impacted lymph nodes out, but ...

I also have TMD - basically a locking and unhappy jaw - as well as compressed neck disks due to a couple of car accidents/whiplashes. Has anyone had similar type issues, how was recovery from surgery?

I also find it very hard to know what to say to folks at work - if the nodes are negative, then I could be back to work soon enough. If they are positive, that's another kettle of fish. Then, I also have had a persistent cough, and just had a chest CT to make sure there is nothing involved in my chest. That would be a real sucker punch.

Started to see a naturpath - and he suggested that cranberry juice and cruciferous veggies (broccoli/cauliflower/cabbage) would be good additions to my diet as they have cancer preventative properties.

Just hanging out and waiting for now....

Donna from Winnipeg here. Good luck with your surgery on Tuesday. It sounds like they now have a good plan and are moving forward to make sure that this beast is eradicated. I had the partial glossectomy and neck dissection - twice - once in 2004 and once in 2007.

The nodes COULD be larger due to their general irritation, but in my experience they are most likely a victim of the cancer as well. For me, the neck dissection was a non-issue. Sort of like adding the superwax to your car wash - an extra but didn't change the actual car wash that much!

I would expect that once the pathology is back that you will be headed for radiation and/or chemo. The chemo given is the type that boosts the effectiveness of the radiation and is not the type of chemo where you lose your hair. Depending on where the radiation beams are aimed, that is where you may find more issues with your jaw and your neck - but those effects likely won't show up for years. They can be debilitating when they do show up - but you have to keep looking at the 'big picture' when dealing with all of this.

My doctors goal is and was to get rid of the cancer and effect a cure. That was the big picture.

Everything else that happens along the way is seen as collateral damage and I do try to look at it from their perspective. I am still here 10 years past my initial diagnosis, and 6 years past the end of treatment from my recurrence, so they do appear to have had the right approach!!

Wishing you well. I will be thinking of you on the 25th. Sending you good vibes for a smooth recovery and early pathology from the surgery! That will be what drives the next section of your treatment so you will want to hear that right away. Hugs.

Donna

Hi there - I am going ot agree with pandora, I would be very surprised if your nodes are not cancerous. Anything is possible but ... Realistically it's highly likely. I'm sorry I didn't see your previous message until now. I usually stop by daily somehow I missed it. My drs. Initial decision with regards to the neck dissection is his experience with this cancer (this is all he does - he is the chief of the head and neck clinic at ohm, teaches at UofT, and trains international fellows in his surgical technique - he was featured in macleans magazine - as number 1 - under the top ten drs. Drs. go to when sick). He knows that not everything shows up on a scan and in his experience over the years he's been treating this cancer has been that leaving the nodes behind tends to lead to a recurrence. Period. The neck dissection really has the least amount of impact. Most of the range of motion in the arm, and shoulder will return with proper therapy over time, as long as you are diligent and determined. (They cut your neck muscles and nerves) ultimately you will have a wonky shoulder - numbness and swelling that will subside over time. Three years out the swelling is a non issue for me, my shoulder is about 98-99 % normal. Mostly my complaint would be a tiny amount of weakness and tiredness when say.. Doing aggressive yoga... Day to day it is not noticeable and truthfully once I get back to the gym (I've been lazy) I will sort it out. From a pain stand point you are numb post op (and you'll look scary for a bit - looked like I went a few laborious rounds with a Mack truck post op) numbness I would say is semi permanent. Nerves do eventually regenerate but it takes a few years and can feel crampy but for the most part I am pain free. Others have a bit more pain, but that really is dependent on the surgeon, and where they cut and the patient and how they deal with pain. The numbness does minimize though, the area that is numb gets much smaller, and I've been stiff, but that slowly loosens up with massage therapy and stretching.

With regards to your individual problems tmj and the spinal issues, I'm not sure how the disks will be impacted - I'd say not much just based on the location of the surgery, tmj will likely not be a problem for the dissection but may for the tongue surgery - I would ask if they intend to split your jaw. So glad they are following through with the neck dissection but not glad that you appear to have nodes involved. I would say that at this point you should be facing rads and chemo post op. - were it me, I'd be yelling - bring it on.

Read up on the surgery - know what to expect post op. If you have any questions feel free to pm me. Hugs and best of luck.

Thanks guys - I'll be glad to have this surgery out of the way, and it sounds like people are up and about shortly thereafter, which is great news.

I'm getting pretty antsy waiting on the surgery though, am not a patient person by nature, so waiting is not my forte. And, this is kinda torture - wait for results, wait for dates, wait for surgery....

I'll let you know how it goes when I'm back home... again, thanks for your kind words and also for sharing your experiences... it makes a difference...

Bring something to write on or speak with... Ipad with a speech program? Pen and paper? Something - I'm not certain but depending on how involved the surgery is - they may trache you - if they do it will be 2-3 days without speech - they have two types of traches... Mine was strictly for breathing and allowed no talking I think that is to prevent you from damaging your tongue and any graft sites. Then two days after surgery they switched to one that allowed me to talk and breathe through it - then day three they removed it - the trache was the one thing I hated! Are they grafting you? Actually how large is the tumor? And have they stages it? This is important to know... That and the differentiation, it will help give you some idea if your are going to be facing radiation and chemo afterwards and how aggressive they should be with treating you.
I was the same way - the minute I found out about it I wanted it OUT... Hugs and good luck tomorrow

Best of luck with your surgery.

Ask for a possey muir type trach to be used IF you get one. This will allow you to still be able to talk. I had that type and it worked wonderfully!

Make sure you tell your docs to keep your pain at a minimum. Dont ever suffer in pain, speak up (or write it) and tell the nurses. Dont be afraid to call them, they are there for you. If possible take someone with you to stay as much as possible (especially if you arent able to speak). Everyone should have an advocate there to look out for them.

Please check in when you can. We are all in your corner cheering you on!!!

Good luck tomorrow Lisa.

The waiting is driving me mad!!

So the tumour(s) are not large - but there are two of them. One is about 2cm and the other 1.5cm. Both were removed by the oral surgeon doing the biopsy and number one tumour has come back. While waiting for the CTs etc, it has regrown to about 1.5cm. But the surgeon will treat the entire area as one tumour of approximately 3.5cm and then cut a healthy margin around it. But I will not need a graft, and it won't be past the midline so I'm taking that as very good.

They are both on the right lateral side of my tongue...

They also said that I wouldn't have a trach - I think in comparison to what some of you have have been through, this is peanuts... I wish I could feel like it was peanuts though...

Thanks for the well wishes...

Lisa, sorry I didn't get to your post earlier. I will be keeping you in my thoughts tomorrow. My husband is being treated at Princess Margaret Hospital in Toronto as well. They are truly at the cutting edge. If you indeed have to have chemo radiation after surgery, make sure to talk to your RO about the naturopathic remedies you are taking. It is something to do with the particulates. But hopefully you won't have to take that step. All the best tomorrow.