So I had my PET/CT scan done today. Pretty painless. The tech let me look at the scans after they were done, which was really cool considering I’m studying bio in school. The only not cool thing was that my whole anterior mediastinum lit up. He pointed to the heart and the bladder and said that uptake in those areas is normal. So I said, why is my thymus lighting up, and he just looked at me because he cant say anything, the doctor has to tell me. Anyway, I guess I don’t know how I feel. I feel weird, like devoid of feelings. I still don’t believe that cancer is what is going on, it just doesn’t feel right even though everything is falling in to place that way. The thoracic surgeon’s head nurse called this morning and she said that she would try to send me the report on Monday if it is available. The official results will be in Wednesday but I would like to know as soon as possible. Anyone else ever felt this weird non-feeling feeling? I guess I am a little shocked that that area lit up, even though that is why I was having the scan done. It was so much bigger than what I pictured in my mind. And why didnt it show up on the chest x-ray. Maybe it wasnt even there in March, I dont know. I feel like I am in a play, acting out a part of a patient trying to get a diagnosis, but like that person isnt me. Anyway, we will see....
Sorry to hear that the scan lit up, Mine did too, and my Dr. still appeared to be not real concerned. I'd like to know what the Dr. says on Wed. if you dont mind, I dont know anyone else in the same situation as Me except for you. I'm young and healthy with no health problems and this whole ordeal has shocked me greatly. Especially the whole thing about them not knowing for sure. I've spoke with you on here before. My surg. said he has seen thymus cancer a few times and seeing NO nodules around the thymus on the CT scan was very good news and should make me feel much better, along with all chest nodes looking normal. Sounds like your CT revealed the same thing. Good luck on WED .
Callie
Well I dont know what is going on. I talked to the nurse today about the initial PET scan report. A 1.2 by 1.5 cm node that is below my thyroid lit up, and so did the anterior mediastinal mass. The radiologist said that the node could be reactive but should be biopsied, and the mass is probably a rebound thymus. Then it said, if no cause for rebound thymus can be found then lymphoma cannot be radiologically ruled out. The nurse said it was vague, and that the doctor will be able to tell me more on Wednesday. She also said that sometimes the doctor diagrees with the radiologist, so they might be able to tell me something specific when I go in. Im confused because Ive been trying to figure out what a rebound thymus is, and all I can find is that it happens sometimes after people have chemotherapy or a transplant. So anyway, Im confused. The nodes in my neck apparently didnt light up though. Wouldnt it be weird if the nodes I went in to the doc for were nothing, but I had cancer in my chest? I guess I would thank God then because I wouldnt have known otherwise. Ill write more on Wednesday. Oh, tell me your situation again please.
I was wondering what your Dr. said about the pet scan....By the way, my situation is that I appeared to have an enlarged thymus on my CT scan, followed by a pet scan which lit up abnormal at the thymus only. My dr. did a biopsy but it was inconclusive, (the radiologist didnt get enough thymus tissue to be examined properly by the pathologist). any way, i am 6 mos preg. and I cannot do the surg. right now, and he wants to remove the thymus completely after I deliver my baby. I'm 29 and I'm going for a 2nd opinion with an oncologist surg. in 2 1/2 weeks, so hopefully he will have more to tell me. My dr. believes this is very rare and in fact doesnt feel like it is lymphoma but he's not willing to rule it out 100%, I'm sick, because I worry about it so much, and the not knowing is the worst, at least if I knew I could start to do something about it. I hope your Visit went well, please let me know.....
Thanks,
Callie
So I was at the doctor today. That thing in my anterior mediastinum is 4.2 by 1.6 cm, and it had an uptake value of 3.7. It hasn’t gotten bigger since my last scan, so that is good. I read that anything over 2.5 uptake value is suspicious for malignancy, but he doesn’t want to biopsy right now because its too invasive. The lymph node had an uptake value of 2.2, and they cant biopsy it because its too close to my carotid artery. So right now, I don’t know what is going to happen. They think that my body is responding to something, but they don’t know what because I don’t have any active infection. He says that I am too young for a thymus tumor, so he wants to wait. He said that if I start getting night sweats or losing weight then he will consider biopsy. They are supposed to call me tomorrow to tell me what we are going to do since they cant biopsy my node. Do you know what your uptake value was when you had a PET scan? Anyway, that mass hasn’t gotten bigger in the past 2 ½ weeks, and that is a good sign. The doc seems to think because I have been feeling good lately that lymphoma is not really possible. I feel pretty good about the situation, even though I would like a definite answer as to why my thymus is enlarged and active.
I dont know. He said that I didnt have to take what he was telling me as gospel, but I dont know what thats means. I have been feeling okay lately, still tired and occasionally itchy, but the doc says that everybody gets tired. Yeah I know. I am confused because I thought if something lights up on a PET scan, then that means that it could be cancerous, and how would they know unless they biopsied? He kept saying that I told him I had a cold in March when the lymph nodes popped up, but I didnt have one then (or since) and I didnt tell him that. Im pretty sure that my thymus is larger than most others in people my age, and it also had moderate uptake on the scan. The lymph node was reported as possibly being reactive, although thats what they wanted to biopsy. Im just kind of confused right now, I thought the scan was going to give me some definitive answers. He said that it could be some kind of inflammatory response, but to what, you know? I think Im going to go back to my primary doctor and have him review everything. Ill see what he says and then go from there I guess. Anyone have any thoughts or opinions?
I agree with Debbiefix--I would definitely get a second opinion. There has to be a reason as to why it is lighting up on the PET scan, and youre doctor could not give you a straight answer. It could be absolutely nothing, but peace of mind is a great thing--and you're health is very important ya know?
I'll be thinking of you--good luck!!
Yeah, I really want to be done with this whole thing. Really I do... but I cant seem to shake wondering. I havent been given a reason why my thymus is enlarged and why that and the adjacent lymph node lit up on my scan. The doctor kept saying it was probably inflammation from an infection, but my blood work didnt show one. I feel like maybe I need to let it go, but I would feel better if I had a real answer. I have been feeling better lately, am I being silly?
This is in response for Chelsea- listen, please take this advice. You need to see another doctor or DEMAND that your doctor take this more seriously. I am appalled that he said to you "if you start losing weight or having night sweats then we will biopsy". Those are late symptoms that something could be going on. My best friend was dx. with non-hokgkins lymphoma 6 yrs. ago. She was having a little trouble breathing and pain in her chest. The doctor drained fluid from her chest several times but kept telling her she must have an infection. Finally, she demanded that he take it more seriously, he sent the fluid to lab and was finally diagnosed. He then told her if she had waited another two weeks it would have spread to lymph nodes. Please, I am not trying to scare anyone, but being an RN for 15 yrs I know first hand to #1 be honest, and #2 I know how complacent doctors can become. Alot of times insurance companies come down on the doctors for ordering "unnecessary" tests unless they are accompanied by symptoms, which may be why he is "pushing" to wait for symptoms- that is completely unacceptable when it comes to a life! Sometimes we have to "play" the game. If it were me I cannot say I would not be entertaining the thought of making up some symptoms to get the biopsy. Sad to say, the hard truth is that our health care system often fails people. It is up to us to stay on top of our health, demand answers, seek second opinions, and not accept elusive answers-and if a doctor insist on giving such answers, he is not worth being your doctor!
Just to back up what Troublesleeping is saying....I was diagnosed a year ago with Stage IV non hodgkins lymphoma. It was stage IV because it was in my bone marrow too. I had NO symptoms. They found this in a routine mammogram where there were two enlarged lymph nodes under my arms. I had a biopsy which came back positive. I have had this for at least 20 years. I did NOT have night sweats. I did NOT lose weight. My blood work was perfect and it still is.
For years I told my doctors about an enlarged lymph node. They always asked how long I had it and said it must be reactive. NOT.
Get another opinion so that you know for sure, in your heart, that there's not something lingering in there that needs to be taken care of.
Oh....and so you know, I underwent monoclonal immunotherapy (Rituxan). I didn't get sick, didn't lose my hair, felt perfectly fine. And I'm now in remission. I was a lucky one. Get yourself taken care of.
I agree. we have to be in charge of our own health because doctors are only human and do make errors. It's not their body but yours. I wonder if he'd be saying the same thing if it was HIM with the pet scan results.
I'll make a bet with you that he'd INSIST getting another opinion and finding a skilled surgeon that WILL biopsy the one by the carotid artery if it was him with the problem.
our nurse freind here KNOWS from experience what it's like to work with doctors first hand. I too have worked with dr.s but i'm not a nurse.
they're arrogant, vain and unfeeling sometimes.
I'm on this particular board because I have a lump that reappeared after yrs of being biopsied on excision and it was very near the carotid artery.
the ENT surgeon was nervous about that but was skilled enough to get the job done. it was 4x6 centimeters large and he thougth it was cancer by looking at it. he was so sure that it was that he had it sent to independent labs to make sure the first pathologist didn't mis diagnose it.
it turned out to be "atypical follicular lymphoid hyperplasia" to this day I still don't know why it came back and waxes and wanes and when on the days it's enlarged, I feel horrible, weak and flue like. I can feel it in my head like a low grade fever.
I saw a general surgeon for a fatty tissue that had to be removed off my lower hip and had him ck out the one on the neck and he said he won't touch it with a ten foot pole because it's so close to the carotid artery and that I shouldn't worry about it since it doesn't continue to grow fast.
my primary dr says the same thing, don't worry about it. it doesn't feel like it's malignant. yet I lost 30 lbs for no apparent reason last yr and wasted away to nothing and I am seeing a gastro dr, and endo dr, because of hypoglycemia attacks, and I have a stong feeling it could all be related to the lymph node.
yet what if it's scar tissue? or is it the other nodes that were enlarged by the big one now inflamed?
all these thoughts and I feel so stupid being concerned about it, maybe i"m over reacting? because the drs tell me not to worry, yet my brother had hodgkins disease when he was in his early 40's. there are over 30 different sub types of non hodgkins lymphoma.
how can a dr. just know it's not malignant just by feeling it?
so many people have been told the same thing and then found out later it WAS malignant after all. who does one believe?
that's why it's best to get the biopsy done.
I pray that all goes well with you and that you go for another opionion, even 3 if you have to.
My doc is supposed to be talking to some other docs to see what the next step should be. My lymph node is not as large as yours lintek45, its only 1.2 by 1.1 cm, but it did light up on the scan. Its in the prevascular space next to the mass (the mass is 4.2 by 1.6 cm). Would it be reasonable to have another PET scan in a couple of months to see if the mass has grown? It didnt get any larger during the two and a half weeks between my CT and my PET, thats why he isnt concerned. But arent there indolent lymphomas? Im only 20, so can I even have NHL? I saw that myasthenia gravis can cause the thymus to swell, but I dont really have symptoms of that. Any more thoughts guys? Ill let you know what the doc says next week. Thanks for all the help.
If it were me I would truely insist on a biopsy and if your current doctor will not ok it- I would find one who would. A couple of months can make a huge difference. That is too long to wait if God forbid it is something.
Hey Ceaves: Callie here, I am not sure what my Pet scan numbers where, the Dr. just said the radiologist said above normal. I've been reading what everyone has been writing you, and I have decided to get a second opinion myself. In a few weeks I am seeing an surgical oncologist to see what he thinks about the enlarged thymus and the fact that it glowed on the pet scan. I am so upset that I did the biopsy and still got no resutls. My doctor spoke with several doctors in his group and outside, he wasnt willing to say its not lymphoma but he seems to be over confident that its possibly nothing. Of course being 6 mos preg. isnt helping my situation. I hope all goes well when you talk to the Doctor. Keep me posted and I'll do the same, hopefully we can both get to the bottom of this thymus stuff,
Hey Callie, I’m sorry to hear about what you’re going through, but it is nice to have someone in the same boat as me. (hope that doesn’t sound bad) My doc sounds like your doc, he can’t rule out lymphoma, but he’s almost positive that it’s nothing. How can they be so sure when they don’t even have a reason why our thymuses are enlarged?? Did any of your lymph nodes light up? One of mine did, in the same area as the mass (which they assume is the thymus). Here’s something else I’m confused about, when the doc was referring me for a PET scan he wrote in the report that if the mass lit up then he would consider a biopsy. Well it did light up and he acted like a biopsy would be completely absurd. It had a value of 3.7 which is in the range for an indolent lymphoma (found that out in an article yesterday tried to find it just now, but couldn’t) I did read this off of [url]www.lymphomation.org/tests-PET.htm[/url]
“Some indolent lymphomas may show only low-grade FDG uptake” also “FDG uptake is non-specific (other pathology, inflammations, infections, HIV, etc)”
So it could be other things… I’m going to ask a lot of questions on Wednesday when I go see my primary doc. I hope you’re doing alright, try to focus on growing your little baby. Although I know its almost impossible. Let me know if you hear any news.
a little FYI. just because you have night sweats,severe itching,extreme weight loss(14% body weight/4 months),painless swollen lymph nodes,extreme fatigue,and thymus glowing on PET scan doesn't mean a thing to the drs. i know,because this is what's happening to me right now.even the PET didn't convince them of anything.they still say that i'm not very sick,and it also showed a malignancy in my cervix as well,that wasn't there in april,2006. i started out with only 2 nodes swollen 10 months ago,started trying to get a diagnosis in april,after more nodes swelled,and i had had night sweats for 4 months and had already lost 20 pounds.i now have over 30 nodes swollen in my body,some have started to turn hard,and more are still coming up.and the drs. still want to play it off like it's nothing!!i am too tired to fight them anymore.in addition to those symptoms i have had bleeding after intercourse for 9 months,and have started to bleed between periods and have VERY heavy periods and severe constipation(since middle of april).they have refused to biopsy a lymph node,first because they said i was too young to get cancer(i'm 34),then they said they were too close to arteries.in the past 3 months,4 people have had a bad feeling about something wrong with me me and 2 of them didn't even know i had been sick.one girl i hadn't seen for years sought out a relative and asked if i was ok. she said she had a bad dream about me.i have begun to have severe pain in my abdomen and have an ache deep in my bones.my bloodwork is normal,so they don't think there's anything wrong.does no one care?i go on and keep working and trying to keep positive,but i don't have the energy to do what is required to change drs.it's all i can do to just stay alive right now.the dr. even tried to suggest chronic fatigue syndrome,and i said that's impossible.i have very few of the symptoms,and my lymph nodes have never hurt. and since when does that cause malignancy to show up on a PET scan???how stupid is that? i'd like to know what a GOOD doctor would think if he evaluated me? i think he'd send me for a biopsy ASAP,and get some kind of treatment started.and just for the record,i have been so healthy all my life that i never catch anything that's going around.i've missed more work in the past 4 months for sickness than in the last 7 years.(about 4 days).i never get infections,and as a kid i was the one who could step on a rusty nail or get bit by a lizard and not have to worry about getting sick.my immune system was always one of my strong pionts,and now it seems like it's gone wacko.thanks for listening. i needed to get that off my chest. kds
