Initial Confrontations with Vocal Cord Cancer

[Martin]

If truth be told, until three months ago, this particular web forum would have been of little interest to me. The topic of vocal cord cancer wasn’t even on my radar, partly, I suppose because it is relatively rare (I’m told about two thousand new cases a year, nationally) and was in no way personally relevant. Then, life changed in a blink, when in mid June, after having experienced chronic mild hoarseness for several months, (which I had attributed to seasonal allergies), I received a diagnosis of carcinoma in situ of my left vocal cord which was also superficially micro-invasive.

Having never had any formidable illness in sixty two years of life, this cancer diagnosis initially threw me for a loop. I quickly began an online search to learn about treatment options and to try to locate a web forum like this one, where I could communicate with people who knew the experience I was going through first hand and could offer both information as well as emotional support. My professional experience as a clinical psychologist and psychoanalyst, as well as my personal experience in living, has repeatedly demonstrated to me that there’s nothing quite like being able to connect with other people who face or have faced similar challenges, fears and anxieties. So it made immediate sense to seek this out now. But while Information about treatment options was easy to find, no where did I come upon a patient based web forum to meet these other needs. So thank you, IVLR, for establishing this forum. As the first person to post on this particular topic, I hope to become a part of a community of patients who can be helpful to one another.

The main issues I have confronted during these past three months have concerned deciding on a course of treatment that will hopefully cure my cancer while sparing my voice. I learned that stage one vocal cord cancer has a very good prognosis because it does not metastasize. But the standard of care treatment options – both radiation and CO2 laser excision of tissue – can result in permanent voice deterioration. I already experienced voice problems subsequent to an initial biopsy and excision, and have been very concerned about opting for further treatment that cures the cancer but adds to these difficulties, which have included voice fatigue, compromised volume and some measure of chronic anxiety because my voice can feel unreliable and inconsistent.

Frankly, until now, I have taken my voice for granted. It’s been like a side kick who’s always reliably there. Clearly, my voice has been the instrument of my professional life, but I’ve also come to understand it as the unique way I express who I am and what I think and feel. In short, I’ve come to experience my voice as a version of me, and the fear of losing more of it has been powerful, because it feels like I am losing an integral part of myself.

While my initial treatment began in New York City, where I live and work, with a specialist I both respected and liked, I ultimately decided to transfer my treatment to Boston, because the KTP laser surgery offered by Dr. Steven Zeitels holds the promise of both curing the cancer and sparing my voice. I had this surgery on August 18th, followed by two full weeks of voice rest during which time I remained silent (for the most part) -- a daunting experience, and am now in a follow up period in which my vocal cords are being examined regularly to determine both their health and functional capacity.

There are two things, (neither profound), that I’ve learned so far and will pass along as potentially useful:

First, as in all areas of illness, it’s really important to become your own case manager and take responsibility for your treatment choices. Had I not searched the web, had several consultations, read the research, asked lots of questions and only took the advice of my competent doctors in New York, I would never have discovered the treatment option I finally chose. But it takes labor, independent thinking, and a degree of courage to go against the grain of “expert” advice. I am hopeful though, that I made the right choice for me.

Second, I’ve been trying to establish a new relationship with my voice -- both valuing and respecting it. I’ve been trying to practice patience in living this slow healing process while trying to stop myself from making snap judgments about the quality of voice I will ultimately have. It’s the “anxiety of not knowing” that is hard to bear and that sometimes derails into my deciding prematurely what my voice quality is likely to be. I’m also trying to remain conscious about not straining my voice, which can cause additional complications. So I’m learning to be more mindful and sparing in what and how much I say... an interesting exercise, both professionally and personally.

I look forward to postings from other people and the helpful dialogue that can ensue from a collective contribution to this forum. And in this mode of communication, there’s no worry about voice strain!

Best,

Martin

[iamlostru]

Hello to all -

I suspect I am much more at he start of this process than the few other posters. And, I too have recently found and started on seeing about the Zeitels process.

I can absolutely say the comments on FIRST - take charge as your own case manager - is essential. Become accoustomed, even accept, that there are going to be a LOT of opinions, a lot not presented as opinions but rather very firm...even rather pushy absolutes. You have to set limits for yourself and what you will allow for someone to do...and hold by them. For example - I have absolutely NO problem with any procedure that is for discovery, analytical or confirmation....discomfort simply not a relevant factor. I will not allow something to be done which the doing of which precludes (making either impossible or not realisitically ever successful) some other procedure later...without having that addressed going in. In other words...say having a radiation, which may mean surgery of some type is eliminated as an option after. These cause and effect things seem to be some of the most difficult to have physicians address....I suspect because they advocate for their preferred treatment so well, don't want to scare a patient by discussing negatives (that may never come about) and of course other things ranging from ego to uncertainty. I would note, that even those who have tried to steer me away from Dr. Zeitels procedure generally agree that it would seem to not eliminate whatever they are advocating to be done, if the RPK is unsuccessful. Sure they may try to make urgency for time and such, an argument, but what is done is and should be MY decision.

I don't want to babble on too much, but while one feels time pressured in these things, realistically, if your Dr was going on vacation for a week, well (except under the most extreme of circumstances), there would be no problem with that delay. Don't press forward just because you feel you must. Also, "quality" in medical care is at least as important as your feeling comfortable with the services your involved with. Certainly, a special situation may require an uncommon response or equipment provided only by one (or very limited) places and people...you got to go with the flow...BUT generally, the procedures needed are more standardized than not, and having them provided where you feel comfortable...(for example a well run office for scheduling/billing and communication are exceptionally important to me and likely can effect the outcome). And yes, Zeitels seems to be a very good place to work with so far. As Mass is a bit away, I am trying to have much of the preliminary testing, before traveling there for the more in depth consult, done locally, and even hope that if some services can be delivered here, but managed there, it can help in comfort.

I would certainly appreciate hearing more of others experiences...both in the medical sense and the dealing with the voice and life change sense. I seem to feel the risks and even likely voice problems that may be encountered are not brought up easily...probably because the Drs realize patients may have it drive medical decisions unwisely. On the other hand, they may not appreciate how advance understanding can ease the very real life effects, (work/family/social and such), which in some ways can be more complex than the medical ones.

I will check back...and do hope more will become active contributors here. The views show hundreds have looked, but obviously only a few have contributed. Come on...if I can embarrass myself so well by contemporaneously typing away...some one else should have no fear!