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Waiting for a first diagnosis - The calm before the storm?

leaderdog's picture
leaderdog
Posts: 11
Joined: Dec 2005

Hello All, New to this group. Just feeling the pressure, the confusion, the Dixie cup in a wind storm feel. Waiting for my CT scan this Tues. Then the consult the week later. Surgery is a given..The Dr. wants it out of there... but what it is he can not tell just by scoping it. I'm not here looking for "answers" because I know they will come: Like them or not. It's a surreal situation to be in. "Could this be happening to me?" feeling. I almost feel I don't have a right to be here since most of you already know and have been through so much. I don't want to offend anyone since I don't know my true diagnosis other than "it": has to be removed .. but at least I can say I can relate to what those of you felt the first time the "C" word could even have been a possibility in your lives. I hopefully will have the surgery in about 2 - 3 weeks.. If it is cancer, you can bet I'll be back and will need to talk, to ask questions... to share. Thank you for listening. Tom G.

Susan956's picture
Susan956
Posts: 510
Joined: Dec 2005

The C word can be scary.... but when you really look into it there are so many survivors that you figure out that you can do it..... Hope you have good luck and will find out that your journey will not be too hard... God Bless...

Stilltalkin
Posts: 10
Joined: Dec 2005

Tom,

I was newly diagnosed on Sept. 21 of this year with thyroid cancer. I had a total thyroidectomy on Nov. 25 and will undergo radioactive iodine in january.

Please feel free to write me as I too am new to this and feel as an outsider. I may not have all the answers but we can lean on each other and learn the lingo and how to get through this together.

I will keep you in my prayers.

Marti

leaderdog's picture
leaderdog
Posts: 11
Joined: Dec 2005

Thank you both.. Marti... you can feel free to to bounce the emotion-de-jour off me too. Sue.. yes I do have to remember that there are many survivors. That bit of wisdom helps a lot. Sue how are you doing? What have you been through if that is not to personal to ask?

I tend to "think of the worst and hope for the best" if that makes any sense? I want to try to understand the extremes of possibilities. I want to educate myself so I can understand what the doctor(s) tell me and I can ask relevant questions etc. But knowledge also carries emotional weight.

I'm just scared because of the nature of my symptoms, the location of the mass, and the length of time since possible onset. Because of this group and others like it, I do know that I will not be alone whatever happens, and that is a comforting thought. Tonight is my landmark CT scan, next week the consult and this should tell me more about what is happening. I don't think they will be able to give me a clear diagnosis / prognosis till they biopsy this "thing" during or after surgery.

It helps to talk to someone other than my dog.. (smile)... matter of fact you are both MUCH MUCH better than talking to my dog.(LOL) Though I must say he keeps me from being TOO serious. I have a dear sister, but I feel that being honest with her about my fears etc will just drag her unnecessarily into them as well. I will wait till I know what up so we are not sharing an unnecessary burden.

Thank you for reaching out, you two.... I'm here to help too if I can...

Thanks again... Tom

TereB
Posts: 288
Joined: May 2003

Hi Tom,
Sorry you are going through this "not knowing yet" phase. All of us here have gone thru the same thing and I know the feeling well. I am a little different because my tumors are rare and I've been having CT scans and MRIs for many years. Still, every time I am due for tests (have tests in Jan) I get nervous, wondering what is going to be found. Do not lose hope, there is always the chance that you have a benign tumor. Waiting for the answer is hard so feel free to come here and talk and do not feel you do not have a right to be here. You might like to check out the chat room, they are friendly and are good at giving support. I hope all goes well with your surgery and I'll keep you in my prayers.
All the best, TereB

leaderdog's picture
leaderdog
Posts: 11
Joined: Dec 2005

Hello TereB and friends. Tere.. thank you for your kind welcome!

I'd like to know more about your experience especially your symptoms. What I know about my mass is that one is in the right sphenoid sinus so this too, if it is a tumor, is a rare place to get one. Dr said it is definitely not a polyp, but could not say definitely if it was a cyst or tumor. From what I’ve been reading, cysts are usually round and liquid filled. This mass is not round so....?? That is about all I know..

For years I have what I would call typical sinus issues. I've had constant drainage for years (I thought this was typical), occasional headaches, sinus pressure, raw throat. I find it easier to choke on food while eating (I thought this was because of the drainage) but I'm rarely stuffed up. I have noticed my teeth have shifted over the last 5 years or so ( age related?. I do feel sinus pressure now.. and I notices after the endoscope exam, he irritated these sights and I felt more intense symptoms a few days.

But the symptoms that are wearing on me now are what I call a "pulse" When it started almost felt like someone hitting my funny bone but it originated in my head. It was fairly mild then. After a while, I noticed it would cause my eyes to shift and my tinnitus to increase with each pulse and these pulses were in clusters of maybe 1 – 6 per cluster. A cluster would take maybe .5 to 1.5 seconds. There maybe two or three clusters within 5 – 10 seconds. I figured maybe up to 100 pulses / minute.. not EVERY minute but non stop maybe lasting a day or two. Now they have been non-stop for about 6 weeks. They are not as frequent ( maybe some days) but each pulse seems to be stronger causing my tongue , lips to feel numb for as long as the cluster lasts.. I even get feel this numbness in my hands and feet sometimes. Does this sound familiar?

What is frustrating.. none of the doctors I've talked to seem to think this is related to their area of focus. ( neurologist with my arthritic neck / rebound headaches) and ENT now with my sinus mass. I have serious doubts that the headaches are truly rebound.. they may have been related to the mass. We’ll see soon enough..

Thank you for listening !!! Tom G.

TereB
Posts: 288
Joined: May 2003

Hi Tom,
I cannot tell you anything about your symptoms and I never had problem with my sinuses. I have a glomus jugulare tumor in my head and after many metastases it is now called a malignant paraganglioma. The first symptoms were stabbing pain in my ear which did not last very long (later it was there most of the time), and I could hear my pulse. First Dr. I saw said it was impossible, it was in my imagination. Hearing your pulse is pulsatile tinnitus and it is one of the symptoms for my kind of tumor. If your doctor doesn't know, check with another doctor. I found that many doctors have never heard of glomus tumors and have no idea about treatment. One reason I could hear the pulse in my ear, besides the tumor being in that area, is that this type of tumor is very vascular. Hearing my pulse was constant and, as time went by, got louder (the tumor was growing). I also had headaches but they didn't feel like a regular headache.

I am glad you are having tests done, a scan, is it a CT scan? I hope you'll have an MRI too, many things can be seen better with one.

I am not a doctor, Tom, but I would say you definitely have something in your head and it is probably affecting some of the nerves there. The ENT is focusing only in the sinus? Hopefully the tests will show what is going on.

Please let me what happens after the tests. In the meantime, try not to worry too much (easier said than done) and remember you are in my prayers.
All the best,
TereB

leaderdog's picture
leaderdog
Posts: 11
Joined: Dec 2005

Hi TereB - I've already had an MRI of the noodle, both with and w/o dye. That is how they spotted the areas in my sinuses. Tuesday night they did a "landmark" CT scan I guess this is a 3D "map" for the Surgeon to use to locate the critical areas he will be working around IE. optic nerve, carotid artery. It's a waiting game at this point.

Doctors can do amazing things with in their sphere of training and experience, but out side of that they are blind. I actually had these sinus images show up on a previous MRI done maybe 5 months ago. But since this was to better "see" the arthritis in my neck.. none of the doctors involved wanted to " bother" with the spots on the sinus. I had to go to my GP and say " look.. these weird symptoms I'm having are getting worse and affecting my ability to work" I had brought up to her that the closest thing I could find that had these type symptoms is MS. So any way.. she suggested I get a second opinion about having MS and ordered this MRI of the Noodle. But STILL, I had to request to see an ENT to determine if theses shadows could be related to my symptoms... Well the ENT said.. that "?" has to come out... I told him my "other" symptoms and he said he does not feel they are related.. AHHHHHHHHH! Anyway.. after this surgery.. if they do NOT stop.. the quest will continue..

leaderdog's picture
leaderdog
Posts: 11
Joined: Dec 2005

I hope I'm using this forum right. It helps me to write things out. I may go on a venting self-centered unreasonable rant here, so forgive me if my weaknesses and fears are upsetting or offensive to anyone. I find I'm going through phases and this is just one....

Last night was tough for me. My insatiable need to "know" found me examining my MRI films closer than before and finding some excellent articles... Well I guess what I saw and read were not very encouraging, in fact quite the opposite. Luckily the good souls in the chat room were there to comfort, support and even distract ( in a good way) the blues away.

I had gone to my sister house for dinner after I was reading and examining the MRIs. I brought over an excellent article on Sphenoid Sinus Complications from types of problems, treatments, statistics.. etc. I like to talk with her and her husband because she has had quite a bit of medical training and can explain some of the technical jargon for me. When I left, there was an unspoken pall in the room. Like Paul McCartney wrote " there's a shadow hanging over me". I wonder if it was a mistake to involve my sister so early in this? Am I getting her wrapped up in my own fears and insecurities? Or is this how people who love and care about each other should handle my condition at this stage of knowledge?

I go through periods of, I guess it's acceptance and denial. Definitely SHOCK... I feel like I'm watching someone else's movie. I'm trying to prepare but maybe what I have to accept is that there is no preparation for this? I have thoughts going through my head like.. : should I be writing out good bye letters to friends? What will I do with the house.. who will take my dog?? Did any of you go through thoughts like this? Am I weak or is wanting to know a sign of strength? Should I just hold it all in and pretend noting is wrong till it is all confirmed? Am I just weird or something? Am I really into self abuse and should consider body piercing and coloring my hair bright RED ( what hair.. yes I know.)? PS. no offense to those with tongue studs and red hair intended.

I can't imagine what so many of you have already been through. I thank God for this site and all of you who reach out and listen and understand.

Susan956's picture
Susan956
Posts: 510
Joined: Dec 2005

I think you are normal. I found that the worst time for me was between when I knew that I had a tumor of some type and when I had a clear pathforward on how to slay the dragon. Hopefully you will get a clear diagnosis soon and a pathforward. That will let you start moving toward fixing things and stop imagining the worst.... By the way it is almost impossible not to consider the worst when you don't know what the problem is. Try to take it as easy on yourself as you can... and stay as busy as you can... that will help keep you from going too nuts....

Take Care.

leaderdog's picture
leaderdog
Posts: 11
Joined: Dec 2005

Hi Susan,

Well.. I can tell you it has been an emotional roller coaster the last 2 weeks (since I found out about the mass) Thank you for validating my feelings are not 100% nuts!

I came upon this site while looking for information about the mass in my sinus and what it might be I am facing. More than just information, I was looking for help. I don't have much family and few friends to confide in. The fact is only thosewho has gone through such a time of uncertainty can understand it.

When I found this site. I was looking for others who may have had something similar to my condition and symptoms. Idid not find this but what I did find though were people like you, who could relate to what this waiting period was like. I can't tell you how much it has meant to me.

I had an interesting experience on the chat line the other night. One of the members thought it was so strange I'd be hanging out with survivors when I was not even diagnosed yet. I started to feel that I might not be welcome. Did I over step some boundry? I'm not sure. I'm sure I will not be the last in my circumstance.. scared, confused etc. I hope people will understand that I and people in my circumstances are shell shocked by even this possibility. Yes. I may find next week, that this mass is benign and all this worry was for naught. I has been a time of growth and change for me. I still do not know my fate. But I do know, that there is a place for people like me here. People facing a very real possibility they have cancer. I've gone through my futile attempts to understand my circumstances, and have come to realize that I'll only really know after surgery. What I have gained from the good souls of this site is the warmth of human compassion and comfort knowing I will never have to walk alone. And that is a very empowering and comforting thought. I can not understand what someone with cancer of any type has gone through. But I can say, my concern is sincere, my prayers are genuine and I've truely enjoyed meeting and talking with many of you. I'll keep this experience with me for the rest of my life. Thank you for all you have given me..

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