3..2..1..Biopsy

[Starlore]

And so, I return w/another doctor baffling issue

At some point a bit over a month ago, I noticed that my usually 'quiet' submandibular lymph (left) had suddenly plumped significantly. In all my 30 years of lymph activity due to various illnesses, etc, the left is the more 'reserved' of the pair, w/the right one being the attention craving, 'boisterous' one. Well, now Mr. Lefty Lymph has decided it's his turn to be seen, but not quite heard...it's firm, painless & apparently not planning to lie down anytime soon...& because it was painless, I didn't notice it sooner. Tender nodes get all the attention, painless nodes are so easily overlooked.

Considering how Mr. Righty Lymph likes to randomly become tender & swollen (even when I'm not quite "sick"), my ENT instructed me that I should really only worry about painless swelling that has lasted more than 3 weeks & to come in should that ever occur. Needless to say, I went to see him a week ago.

This had to be one of the shortest office visits I've ever had--he palpated my neck for a minute w/a concerned expression & asked again, how long Mr. Lefty Lymph had been upset. I told him 1 month (that I know of)...at this point he recognized that ALL of my cervical lymphs on the left side were firm as well--from behind my ear, all the way down to the shoulder--this led him to state very matter of factly "you're at higher risk for Lymphoma, you need an MRI right away".  I knew this but who wants to think about that? Considering that he's one of my docs' that always has another possible explanation for everything, it was a bit unnerving that he was being so concerned & had nothing else to offer.

I had my MRI's last week & the results were inconclusive. He determined that all the nodes down to the top of my lung on the left side, were enlarged & that something is definitely "not right"...& that my parotid gland which is now swelling, isn't right either.

This is where it gets fun..He decided on an FNA/Fine Needle Aspiration, but then decided I should have an incisional also since an FNA wouldn't rule out as much as the incisional. Then he asked if I currently have an oncologist--this made me twitch--should I have one, even tho' I've never had cancer? Is this something he's expecting just because of SjS; that in my 'army' of specialists, I probably have an oncologist lined up "...just in case"?

At any rate, the FNA is tomorrow. Incisional on the 26th. To ice the cake, I've been having some nasty tooth pain on the left side. Had a filling redone over a month ago, that was said may need a root canal, but now I can't tell if the pain is from all the enlarged nodes & swelling, or if its a bad tooth...So everyone has agreed w/me, that I should wait to find out what's wrong before examining the tooth issue further. Waiting waiting waiting, sucks

Has anyone else had an issue like this? Not specifically of course, but something similar? I read a lot of Lymphoma & Lipoma posts but I can't quite relate to any of them. As usual (& as my doctors have jokingly pointed out) I'm an "alien" case, hah.

I think I just need some piece of mind, I'm stressing out & can't sleep. All this medical crap keeps putting me behind on rent & my cat is STILL waiting (3 months now!) for his thyroid to be removed 

As always, thanks for any insights that you may have.

[Pooh]

Starlore,
I'm sorry but the only excisional biopsies I've had were of my left breast.  The waiting for reports was horrible. 

I do wish you the best of luck with these tests and a negative outcome.  This is one time I hope and pray it's not positive. 

Take care and hang in there, "this too shall pass". 

Hugs, Pooh

[Linda196]

Sorry you're facing this, Starlore, but best to know for sure about these things.

I had an excisional biopsy of my scalene node, just where the neck meets the shoulder, in the vee of the collarbone. It caused no post op disconfort, and healed very quickly (no stitches, the surgeon closed the 2 inch incision with crazy glue!) In my case the very enlarged, rubbery, painless node tested as sarcoidosis. I've had both submandibular glands become swollen, rubbery but painless, but both receded within months of starting Prednisone, so were not biopsied.

Please let us know how the procedures go, and when you get the results.

[lynnmarie219]

Hi Starlore,

I've not had any biopsies like this, but I want to let you know that I'm sending you lots of positive thoughts and hugs for upcoming appointments. I can certainly understand how frightening this must be for you!

I hope that the tests go smoothly and all results are negative....know that we are here thinking of you and keep us updated on how you are doing!

[Katybarstool]

HI Starlore

Sending you lots of positive thoughts and a big hug.

Kathyx

[Starlore]

I've done sooo much research online & everything is just so...negative! Its nice to just hear that there's a possibility other than cancer--not that sarcoidosis is a walk in the park, but if i had to choose...lol Not too worried about the actual biopsies so much as what they could indicate hah. God knows how SjS loves to give give give!

Thank you so much for all of your warm wishes, it really does mean a lot! So easy to get down about these things 

Lynnmarie, I love your hug! Its so cute! 

[JannaLee]

Star,

My blood went cold as I read your post and memories of my own "benign tumors" came back to me.

Honey, this really could be something other than cancer.

I had bumps on my thyroid and a golf ball sized tumor in my left submandibular salivary gland.  Just like yours, it was not uncomfortable in any way.  My doctors freaked out and told me not to touch it at all or even to touch my neck.  The surgeon said he would not biopsy it because it was coming out no matter what and scheduled surgery within a couple days.

When it was removed and determined to be benign I was more than relieved till I got another one about 8 months later and went through the same exact drill including the doctors all acting like they were sure I had cancer.  They and I worried the first one was somehow mis-read by the lab and a cancer diagnosis had been missed.  It wasn't.

My dear, I am praying like mad over this and for your fear which makes it hard to sleep, to think, or talk to people about the bloody weather. 

Janna

[pudmott]

Hey Starelore,
I just want to add my positive thoughts and prayers your way. Its a whole new world of freaky when they throw out that C word and waiting is the worst. Us sjoggies have got to be the most patient people in the universe. The thing is these lumps could be anyting and as an 'alien' case with you even more so. As you said our little gift is one that just keeps on giving and giving.

I will keep everything crossed that there is nothin big going on and your lumpy bits will return to normal very soon.

take care

Pud

[Scottietottie]

Hi Starlore 

I'm with the others. I'm sorry you're in this predicament and I'll send all the positive thoughts I can muster your way.

The only thing I'll add is that I've read, if the worst comes to the worst, that lymphoma responds well to treatment.

I hope it doesn't get to that.

Good luck - take care - Scottie   (and let us know what happens)

[JannaLee]

Yeah, Scottie is so right.

I've read it's real curable and very slow growing. 

[susanep]

Starlore

I remember several years ago I had a doctor send me to an oncologist and I was certain I must have cancer. They did blood work and xrays while I was there. They were all equipped for everything. It turned out I was not diagnosed with cancer, but the day was not a fun one . It was all the fear I felt that caused it to be so scary. It turned out my gp was just being careful about everything which I know is a good thing, but she use to scare me so. Just remember that though people do get cancer, most of the time it is not cancer. Today though when it is, they can treat it so much better. So try to not worry too much until you find out. And, I know that is silly to say, but just try.

susanep

[irish]

starelore, I am so sorry to hear that you are facing all this scary uncertainty. You will have a long few weeks waiting to get this all done. My prayers are with you for a positive outcome.

I am very interested in this tooth that needs the root canal that you had worked on about a month ago. Sort of makes one wonder about infection, etc. Things always come in 2's or more and it makes things all that more confusing. Hope that your cat is surviving without his surgery---his turn will come!!!Irish 

[Starlore]

Thanks so much for all the positivity everyone!

I really was taking all this in stride for awhile, but w/all this waiting comes entirely too much time for your thoughts to drift in stupid directions, especially when the Docs' are shaking their heads in such morbid manners lol! Admittedly, I'm not a very patient person, but I do try very hard! I'll get thru' it tho', I promise 

The needle biopsy was this morning & went very smoothly other than a tad of discomfort afterwards. Just a great big relief to get it done--one down, one to go! I should have some generic, preliminary results on Monday, then its on to the big wait for the big biopsy haha  Hurry up & wait is always the rule of the medical game.

...Meanwhile, I'm trying to distract myself w/work & the millions of other things I need to keep up w/on a daily basis--should help--I hope! I will definitely update when I get some news in the near future!

I love you guys so much, my sanity would be so lost w/out this community. Makes me feel like I'm stable ground for a change.

JannaLee, incidentally, did they ever give you an explanation for your tumors (Lipomas?)? Or was it just something they shrugged off as SjS related "weirdness"?

[JannaLee]

They were ranula's.  The first one was a deep plunging ranula and very firm feeling.  The second one was not plunging, it was in the floor of my mouth but also very firm and fast growing.

From what I understand a ranula is just a benign mucous filled tumor.

No one ever explained or even wondered out loud why I got them, in fact I was the one who asked if maybe I have Sjogren's because I Googled "chronic, benign salivary tumor" and Sjogren's is what came back.  My surgeon laughed at me and said he was sure I didn't have it but tested me because I asked him to...

Looking back on it all, I realize he didn't spend any time at all wondering what caused my tumors after he found out they were not cancerous!

The blood tests came back strongly positive ANA, Rheumatoid Factor, SSA, SSB.  I've never had the lip test.

Star, I'm hoping the worries will stay at bay through this...I'll just admit right here and now that I was a big bowl of blubbering goo during my 2 scares!

Sending you my very strong wishes for a benign outcome and not too many sleepless nights between now and then!

Janna

[Starlore]

Janna, sadly, its not surprising to me, that they didn't follow-up enough to determine -why- you were having tumors. Nowadays, the medical world has really become such a joke in this regard...so many breakthroughs & so little compassion or regard for the human condition. Of course, there are some good Docs' out there, but its disheartening that for each good one, there seems to be at least 5 indifferent ones 

Regardless, I'm glad that they turned out to be ranulas & nothing more pressing. Good for you for giving that Surgeon a clue 

For the record, I slept pretty well overall last night...better than I have all week at least! Thanks again everyone for all those positive thoughts & wishes, looks like they're paying off!