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Return of Bilateral carotid body tumor

kristab
Posts: 6
Joined: Mar 2005

I haven't been on the site in a very long time. I am looking for someone who may have some additional information for me. I have had surgery twice (left and right) for carotid body tumors. I have a tumor again that is on the left side. I carry the SDHD gene so I knew this was a strong possibility. I also have a tumor near my parathyroid. I have been seeing several surgeon's and endocrinologists and luckily my labs have been coming back within the normal range. The surgeon is not very happy with the idea of surgery due to the fact that I had nerve damage during the first surgery, as well as scar tissue (now). He has presented me with the idea of radiation (Cyberknife). Help!!I don't like either option, but I have been dealing with this for the last 6 years and now I am having some pain and nerve involvement from the growing tumor. Does anyone have anything more to add, maybe something that I have missed. Because these are so rare, I have a hard time finding anyone who knows much about them. I have already emailed and discussed this with the University of Pittsburgh. Any information would be beneficial.

TereB
Posts: 288
Joined: Apr 2003

Your name is sort of familiar...
I have a glomus jugulare tumor which is a cousin of the carotid body tumor. I had surgery for the first tumor that was in my head and I didn't like it. There was nerve damage and I told myself I would never have that kind of surgery again no matter what. The tumor grew back, more aggressive and twice as big as the one that had been taken out about a year before. At that time there wasn't much info around and the ENT I was seeing was not well informed even though he had told me I was lucky he was my doctor since most docs didn't know about my kind of tumor. I was in pain, that kept increasing, for about a year and the ENT kept saying it was not a tumor, the pain was caused by stress. I changed doctors, the tumor was found and I was given the option of surgery, radiation or doing nothing. I chose radiation. The new ENT/surgeon told me he was willing to do surgery but that it would be complicated because the missing parts plus the scar tissue in my head would make it like going into unknown territory. Besides, these tumors are very vascular so there may be complications.

I had radiation on that tumor and it has stayed there, not growing, sort of dead since 1990. About 3 years ago it shrank some, all by itself with no treatment. I now have many metastases, mostly on bones and I've had radiation on the tumors that are causing pain. Sometimes the tumors go dormant, no growth or pain.

Everybody is different. I've known people that have surgery everytime the tumor grows back. Others have surgery the first time and radiation after that. This type of tumor is usually slow growing, vascular and tends to recur after surgery.

I've never had radiation (Cyberknife), just regular radiation the old fashion way, radiation with the Peacock machine (didn't make me very sick) and the last time it was a newer kind of radiation STRT - Stereotactic Radiation Therapy, I think that's the name. I liked this one because I didn't get sick at all, the pain left pretty fast and it was very easy compared to the other kinds of radiation. I was not even nauseated. My radiologist said it is used for different kinds of cancer but it seemed to work better for glomus tumors. This kind of radiation bombards the tumor from different angles but there is a lot of less damage on the healthy tissue surrounding the tumor. Check with your doctor/surgeon and see if that is an option.

Is your surgeon an ENT? Yeah, I know well how rare these tumors are but there is more information available now than 21 years ago when I was first diagnosed. I am also rare among the rare.

Univ. of Pittsburgh had a very good ENT, retired now, and they also did some research but had to stop, I think because they couldn't find enough people with this type of tumor.

I hope what I told you can help in some way and I hope you can find something. I know well how it is to be there with some rare tumor and few people knowing anything about it.

Hugs and prayers,
Tere

kristab
Posts: 6
Joined: Mar 2005

Thanks for the response Tere.

The doctor that I am seeing is an ENT that specializes in tumors of the neck and skull base. He is one of the first doctors that I went to that I did not have to educate about these tumors. I am just getting so much conflicting information that I am frustrated. The tumor that returned has been there since 2003. I was having surgery on that right side and they found that I had a small tumor growing again on the left. It has steadily been increasing in size. This time around, probably due to the scar tissue, I have been having more pain. The nerves in my neck and face are a little screwed up and consequently as this is increasing I find more problems developing.

I would like to ask a question that maybe someone may have come across in their research. Ever since I had my first surgery in 2001, I have had problems with episodes of dizziness and the best way to describe it is the feeling you get when you have way too much caffeine, jittery and palpatations. It doesn't happen often, sometimes a few times a month. I have gone to the endocrinologist and had my catecholamines checked, as well as metanepherines, and basically they are within normal range. The ENT is stumped. I have had my thyroid and parathyroid checked, and even though I have a adenoma on my parathyroid, my levels come back within the normal range. Have you come across anything like this? I know that having both carotid bodies removed can lead to other complications, but I do not seem to be fitting in any type of category.

I am sure that others have been in my position. I just feel like I keep getting passed around from doctor to doctor and don't get any answers.

Christmas
Posts: 92
Joined: May 2005

Hi, Sorry I can't provide any info on your kind of tumor, but the mention of cyberknife caught my eye. There is a cyberknifesupport.org website that is excellent. They even have doctors repond to posted questions.

Sending you all my best wishes....

TereB
Posts: 288
Joined: Apr 2003

I know very well what you mean when you say your ENT is the first doctor you didn't have to educate about your tumor. For a while I went through the same thing which I though was kind of ridiculous: me explaining to the doctor about my tumor.

I can also understand frustration from conflicting info. Some doctors say radiation after surgery for carotid body trumors, others say no. Some prefer embolization before surgery, others don't.

Do you have total confidence in your ENT? I do in mine because no matter what I tell him he tries to find the answer and never ignores what I tell him, even if it doesn't seem to have anything to do with my tumor.

Your surgery was in the neck area, right? Did you have radiation too? Nerves are very sensitive and can get upset and act up after surgery or treatment. The same happens with glands after radiation. Radiation affected my pituitary gland and I had a radiation induced menopause before I was forty. Have you had an MRI or scan of the area where you are having problems, thyroid, etc.?

Yes, surgery to remove both carotid body tumors can lead to complications. I don't know but can't radiation help? Usually dizziness has to do with the ear (vertigo) anad it happens to me, not often, if I move my head from side to side too fast. More to do with my eyes/vision even though I have no problem with my eyes. The eyes send the signal to the laberynth? in the ear which is what controls balance. You have it on both sides of the head. Since one is OK and the other was removed, only little bits remain, my brain gets a little confused and I get dizzy, feel like I am going to fall. I trained myself not to move my head like that.

Most of the pain I've had over the years its been because a tumor is pressing on a nerve. After radiation the tumor shrinks some so it is not touching the nerve, pain goes away and life goes back to normal.

Remember I am not the doctor. I am just giving you things to look into. Could the jittery feeling and palpitations have anything to do with panic or anxiety attack? Does you ENT have a diagnostician in his team?

Since I have so many mets, I see my ENT only once a year because he wants to keep an eye on me. I see an oncologist several times a year and when anything comes up, he seems to get a better idea of where the problem may be. For my followups I usually have bood tests, MRi and scan, not only to check on what the tumors are doing but also to check on anything new.

Is it possible to see another ENT for a second opinion? If you are close to a university might be good since many of them do a lot of research.

I wish I could give you a good answer. I will look around here and see if I can find anything and will let you know. In the meantime, don't give up or lose hope.

Hugs and prayers,
Tere

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