Hi, I've been perusing this board since i found it in January - a real life saver and huge source of support for me.
I am wife and caregiver to Kris diagnosed with SCC R)BOT with metastases to R)tonsil and 1 lymph node. Stage 4 in Dec '10.
He has been treated with 35 IMRT and Cisplatin - received 2 of 3 doses only due to non-existant white cell count.
Kris did amazingly well with really very few side effects. He had no pain and has never needed analgesia meds. Had/has the usual dry mouth and extreme tiredness but that's about it. Used his PEG for about 2 days only and has always managed to swallow at least his ensure.
We are now 9 weeks out of treatment. He had his followup MRI last week. We get the results of this next Monday .
My question is should we be pushing for a modified neck dissection? His node has reduced in size and hardened but I am concerned that there may be microscopic spread to neighbouring nodes. My feeling is that we have nothing to lose by doing this and everything to gain. I would really appreciate the opinions of the board members on this. Are there any other questions I should be asking when we meet with the radiation oncologist next week.
Of course the waiting is hell and I will be a cot case on the day.
Kris continues to do well and has been back at work for 4 weeks now. He is being treated at Auckland hospital in NZ which is the closest Clinical cancer hospital for us and was seen by a whole Head and Neck board.
Thanks for any advice.
Tammy

Hey congrats to your hubby on getting through the process! He had 2 extra imrts than me, I also had to drop my last chemo because of my white count. normally I would say a neck dissection couldn't hurt ( recovery isn't too bad - pain very limited mostly numbness and stiffness - ) but since his node has been fried (I'm assuming it was targeted by radiation ) he should be good. If the radiation was enough to kill the node that you knew had cancer then it's highly likely it got any microscopic cells nearby - I'm assuming they did the whole area. Plus if you trust it to kill the BOT cancer - and tonsil then it should easily get any residual stuff.

I'm assuming he didn't have surgery for the bot and tonsil.

So why add more recovery time?
I know it may ease your mind but they don't just target the one node they generally paint all the odds to kill any microscopic cancer. That's actually why I went through the treatment - they said i was in a gray area since they'd removed "all" my cancer. I'm glad I did.

I had a lesion on my tongue - and one node involved - they removed 40 nodes, and my lesion, on day one of my treatment my rads guy told me I had a node highlight on the other side - my non neck dissection side. They rewrote my plan to include the right side, and deliver the same dosage - in less time so I finished on schedule. When asked all three doctors said it would take care of it if it was cancer (it was very small 3 mm, and never biopsied) it could very well have been an inflammation, or infection. But I am a better safe than sorry person.

Wait for his results to come back, ask the question of the doctors, and just keep an eye on his neck, and check it regularly between follow ups.

Good luck and take care.

Thanks for the reply Cheryl.

I am concerned re neck dissection as I have read a lot of papers/journal articles on this topic.

They seem to be saying that long term survivorship(as a percentage) is improved post radio/chemo treatment by neck dissection.

My overall impression reading OCF posts is that many patients who have a neck /nodal recurrence of their oral cancer did not undergo a neck dissection at the time of their original treatment. Also many who do have a ND have positive nodes found.

I am unsure whether a wide area of Kris's neck was included in the radiation field, or just the node we knew about.

I want Kris to have the best possible outcome and I want to have as much knowledge as i can when we meet the RO on Monday.
I never want to be in this position again

Thanks for lstening and any advice.
Tammy (Downunder)

Tammy, I did not have a ND until I had OC the third time. The first 2 times I was stage I. The third time I was Stage IV so my doc wanted me to have the ND. Luckily, not even one node was positive.

Best of luck with your appointment on Monday!

I know it's scary - best to find out what they radiated exactly - then decide. I have to admit I'm considering asking my dr. To do one on my right side - profilactically good luck when meeting with the RO.

In my case, I wasn't asked or told about a neck dissection. During the 1st surgery to remove part of my tongue, the Oncologist did the neck dissection and after I was glad. A couple of the nodes were positive. Without the dissection, what might it have ended up being?

Likewise for me, Tammy. Naturally every case is unique. In mine, my ENT, RO and MO were all of one mind about the ND. I know there are many here who didn't have it of course and perhaps they will weigh in.

Good luck and good thoughts to you both!

Tammy, I have to agree with much has been posted here, not necessarily directly. The theme I see is that each case is unique, and your Doctors are examining the situation your husband presents in totality. I think the old surgical approach of "when in doubt, cut it out" has been replaced, thankfully with a more reasoned approach. I had a neck dissection during my surgery, and while I am glad that it was done, there are the longer term effects that also have to be given consideration.
I had 56 nodes removed, none returned positive. Now, 5 years out and living with the reality of a great deal of fibrosis throughout my neck and upper chest that severely limits my range of motion, there are days when I really wonder about the decision to proceed with the ND given there were no signs of metastic disease prior to surgery.
Those ponderings do only last for a moment, but they occur. I think that if your Doctors felt there was a legitimate need to consider an ND, they would do so. Of course, having another ENT evaluate the case is never a bad thing either. Good luck on the ongoing treatment plan

Tammy

Neck dissections are another issue that doctors differ on. I've seen lots of studies but no definitive answer. Because the post-RT neck dissection is often negative, some patients undergo surgery with its associated risks for little benefit but life long complications like the previous poster. One 2006 study found that an amazing 94% of head and neck cancer patients who had a Radiographic complete response (rCR) in their CT after the TX was over ended up having neck dissections yet none of their nodes were positive.[quote] CONCLUSION: Patients with rCR 4 weeks after RT can be spared from a post-RT neck dissection regardless of initial node stage[/quote]. Journal Oncology Neck Dissection
That's the study my ENT showed me, so I am biased.
However my RO said he relied upon studies showing that only 50% of Neck Dissections turned out to be unnecessary. I had the CT/MRI done and based on it, skipped the Neck Dissection. But I was very comfortable with my ENT/surgeon.
Although my cancer did come back, it was not from the lymph node but rather the original primary tumor resistant to Erbitux. Since I had to have massive salvage surgery, I did have the neck dissection done but all it did was prove that I did not need to have it - no nodes were positive and the two nodes that used to have it the first time were completely necrotic (dead) and the pathology report found no cancer in them either.
It's a hard choice if the post TX CT/MRI or PETscan show all clear in the nodes. In the end, most of us just do what our doctors suggest. It's been over two years since my neck dissection and I still have pain and rigidity there but it has gotten a lot better and I can actually turn my head now.
If you do go for a neck dissection, be sure to get a prescription for physical therapy on the neck and shoulder. Without those, I would have never recovered flexibility and mobility because the scar tissue and adhesions can cripple you for life otherwise
So sorry I don't have a definitive answer you could count on - just my experience to share
Charm

I would question a precautionary post RT ND because ND's are generally not without complications and side effects.

I had a selective ND, on the right side and there are noticeable differences between that side and my left side. Nothing really bad; mainly a general tightness. Both sides got zapped.

But, recently I have noticed a mild on-and-off ache around my right ear. So far nasal scopes, etc haven't found anything, and it is probably nothing - perhaps RT fibrosis or late-effect ND nerve or muscle damage, but it means I am being scheduled for a follow-up PET/CT again this year.

Where I was treated ND's are generally avoided before RT, except to remove very large (potentially hypoxic) nodes or in cases where chemo is not advisable. Post RT they use a PET/CT to check the nodes.

Hi All,
I do appreciate the advise and opinions of you all along with your own experiences.

We saw the RO last week for the results of Kris's 9 week post treatment MRI.

We were told that "there has been a very good response to treatment" from his primary tumour at the base of tongue - his scans were reviewed at the weekly head and neck meeting so this is the opinion of the "team" .

This is fabulous news so we have at least cleared the first hurdle .

They will now send him for a PET scan to ensure there is no cancerous activity in the node that is still visible and that we can still feel. It is hardened and shrivelled.

I asked him again if they would proceed to ND if the PET showed the node was positive. Again he said no. They would do a Fine needle aspiration.

The RO told me that within 2 years no-one would be doing ND's as they are not necessary and the studies coming out now show this.

Guess I have to go with this approach - and I do want to. This is a whole head and neck cancer board/teams opinion.

I am just the wife who wants her husband to have the best, but I don't have their level of knowledge and expertise.

So, we will get the PET done and see what that shows.
One step at a time.

Tammy

Good news!!! And best of luck!

Tammy,

If the PET shows activity then the FNA would be done just to confirm (or not) the presence of cancer not in lieu of removing that node. I would ask what they plan to do IF that node was positive for cancer.

I had good response from my Chemo and Radiation but my ENT was pretty persistent in the ND as a precautionary measure. As it turned out, the post surgery biopsy showed only on microscopic malignancy in one node. But like someone stated above, it's not without its side effects/ risks. I in some ways feel the surgery was more to recover from than chemo or radiation. I had a bit of numbness all the way to my ear. Now I have a bit of tightness on that side. But like stated, statistically, it makes good sense.

I found it the other way around - radiation is the gift that keeps on giving - the ND does cause stiffness but I recovered from surgery much quicker. Maybe because you had rads first? When they did the biopsy the microscopic cancer was dead right? If not Ghent the ND was the right call either way I err on the side of caution. Do what you can now -
Mark Sounds like you're doing great!!

One sure thing is that all together, they just keep on giving. They add up to make you a fighter for sure. Good luck thru it all.