Hello,
This is the first time I am writing here, but I've been to this forum in desperate search for information and, yes, emotional support & comfort, since last July, when my husband Michael was diagnosed with a throat cancer. I cannot thank all of you enough for sharing your knowledge and experience. Your unbelievable courage has helped me to cope better and overcome a sense of loneliness that I think is common among care givers as much as among our dear patients.

Michael has completed a 7-week radiation and chemotherapy treatment a month ago. He had 2x3x1.5 cm larynx tumor (SCC, invasive poory differentiated), with two lymph nodes small enough that only PET scan was able to suggest that they were cancerous. The coordianting doctor (a surgeon) gave us a good news yesterday that the cancer was responsive to treatment and Michael is now cancer-free. However, he strongly recommends to do a follow up surgery to remove all the nodes in the area (about 10 - 12) where two bad nodes were as a precocious measure as there is close to 30% risk that cancer will return. He is very honest that there is no data that would confirm the benefits of doing this now (while tissue is still soft) than later if he discovers enlarged nodes (which may or may not happen). He also doesn't mind if we seek the second opinion.

We are very conlicted and find it very difficult to make a decision. On one hand, we want to do everything now (Michael is 45 years old) to prevent going through this nightmare again. But we are not convinced based on a lack of data that the proposed surgery can make a difference. I am also concerned about the timing of the surgery: Michael's immune system is still not 100%.

I'd very much appreciate your thoughs and experience.

Chilita

We asked our radiation oncologist at Hopkins this exact question on Tuesday (as Barry may also get a recommendation for lymph node removal subsequent to his chemoradiation, completes 9/28, when we see his ENT Monday).

He said, lymph node removal may add 10-15% to local control but then added, however, and this is a direct quote, "there is no evidence for a long-term survival advantage." I have not had a chance to follow up on this although I know there have been some papers recently concluding that neck dissections are deinitely recommended in certain cases but not in all.

Post-chemoradiation ND surgery is not done routinely at the three top CCC (MDAnderson, Sloan and Hopkins) but that reflects in part the make-up of the staff. Our RO said that, for example, at Sloan the surgeons very pro-neck dissection left for other positions and the replacements are less proactive on this issue. A Hopkins it is considered "controversial" (our medical oncologist's words) and many radiation patients are declining the surgery or adopting a watch and wait position. Btw, they would not s the surgery until after the 2-month checkup which is the first time they look seriously to see how well the cancer has responded.

If you are so uncertain you may well want to take him up on a "second opinion", perhaps from a non-surgeon, maybe your medical oncologist or someone recommended by him/her. Do not be reluctant to seek a 2nd opinion, it is not a sign of lack of trust of your doctor, it is simply good medical practice and in fact, recommended by the American Cancer Society in such cases.

I would also ask your surgeon some hard questions -- such as, what in his experience are the differences in control and recurrence in patients who have had or not had ND at your institution. Your husband's cancer was poorly differentated and this might make a case for node removal; the surgeon can explain this more fully. Also, what side effects might your husband experience? A lot of folks on this list have had ND and many have said it was less traumatic than the chemoradiation.

The long and short of it, get as much input as you can and make your decision.

Good luck,
Gail

Thanks, Gail, for such a prompt response. It looks like our husbands completed treatment almost at the same time. Hope Barry is doing well. Michael is finally looking like himself again, except for two round bald spots in the back of his head at the neck base - but it is no concern for us. He feels better too and is able to get back to work.

You mentioned some research on the topic - could you point out where I can read it? I just re-read an initial PET scan report and realized that in addition to two abnormal lymph nodes in the left, it showed one in the right. I have no idea how I missed it - it must have been stress or denyal or whatever. Now I am wondering why our surgeon suggested ND on the left side and said nothing about right side.

Thanks again for your reply.
c.

Hi Chilita,

I had my treatment at Hopkins as well and just for the record, I had a neck dissection and then radiation. Don't be afraid of the neck dissection...it was a breeze compared to radiation. If it increases Michaels survival rate by 5, 10, or 15% isn't it worth it? Nothing to lose and everything to gain. As others have said, "throw everything at it the first time." Best of luck.

Hi Chilita --

It is important to query your doctors about both the risks and the benefits of ND for Michael -- with three nodes (bilateral) the first question would be, why not both sides for surgery?

At this stage, Hopkins would not be doing a PET scan because the residual infammation from the radiation can cause false positives -- our RO said, "it would scare both us and the patient" so they now wait two months.
You may wish to ask about the feasibility of waiting another month and rechecking; that is, what are the risks and how would this make surgery more difficult?

Your doctors know Michael's case best but do not be afraid to ask ask ask. ND is by no means routine any more since such good results are coming out of chemoradiation for many patients, but for certain cases (and Michael could well be one of them) the benefits are real. And as many have said, it is not that terrible to undergo. (I think the name throws most people.)

However, I do not always agree with the "throw everything at it" school -- otherwise we would still be doing radical mastectomies down to the chest musculature on women when we now know that for the majority, simple lumpectomies achieve as good results -- Rather, each individual's case must be evaluated to produce the best result for *that individual* -- meaning cancer control, as well as reduction of serious long-term debilitating side effects.

This is a difficult balancing act for doctors and the patient needs to be part of the decision process as well.

Good luck to you and Michael,
Gail

I would really like to hear Brian's imput on this question. John's Oncologist[also his surgeon] did a Radical Neck Dissection as part of the tumor removal. Didn't give John a choice. All the nodes that were removed were clean. The neck dissection part of the surgery was more irritating than painful, especially during radiation. It never ceases to amaze me about the different approaches that are out there. Amy P.S. I do agree with Gail that we have come a long way in treating some kinds of cancer.

A few thoughts for you:
In My Humble Opinion, some docs want to do this to "see" if they should be more concerned. In other words, if the nodes all come back negitive, then less to be concerned about.

IMHO, Some doctors lean towards this option because it is the "old standard" and may just offer some percentage of better longterm results.

also IMHO, This surgery, if the modified version, sparing the nerve and sternocleidomastoid muscle, is not as bad as it sounds.

Lastly, getting a second (or third) professional (as opposed to humble) opinion is a good idea.

From what I have heard, I had my disection Last Jan, the only way they can be sure that the cancer is gone is by the pathology report after surgery. It takes over a million cells to show up on a scan. To me, it was a no brainer. I wanted that negative path report.

Steve

Its true they can't be sure the cancer is gone unles they do a neck dissection and look at the pathology report--there's a 30% chance of having cancer cells that wo't show up on a scan. Like Amy's husband, I had mine done during the surgery to remove the tumor and it was a modified neck dissection and it was really not a big deal at all. I don't think Gail's analogy to a radical mastectomy is really appropriate here. It is a much less defiguring and much more esay-to-recover-from surgery.

Also, it seems to me that removing lymph nodes if they are cancerous HAS to improve your chances over leaving them there to possibly metasticize.

Nelie

Hi Nelie --

I wasn't comparing a neck dissection to a radical mastectomy, I was simply using the latter as an example of the "throwing everything at a cancer" school, as opposed to assessing the best balance between treatment and side-effects.

However many people have had long-term problems from radical neck dissections as done in the past, which is why most surgeons today do modified or selective ND, at least after chemoradiation. RND proved disabling to some, with impacts on shoulder mobility and nerve function etc. Our ENT said she did lots of those while a resident at Hopkins but would almost never consider doing one now.

As to whether they are needed, I guess you have to feel confident the chemoradiation took care of the cancer to decline ND. If you are in doubt or want to be more sure (but still not 100%), get the surgery.

We see our ENT Monday so will report what she says, I will ask her more about the pros and cons from a surgeon's point of view.

Gail