reassurance, anyone? :)

KCLee · New User Joined: 01 Sep 2009 Posts: 5

Hello- new to the forum. Just a little background- I'm 38 yr.old female w/ 2 teenagers. I had a small "lump" on the right side of neck, very top of neck but underneath ear/jaw line. It's been there for a while- probably about a year. I didn't think anything about it because I've been sick on/off, so just chopped it up to swollen nodes. I got sick with a horrible respiratory infection in November- took till January to finally kick it (after 3 rounds of abx). Prior to the infection, I had been complaining to family that "this thing feels a little bigger- I'm going to get it checked", but being the procrastinator that I am, there was always something more important to do. Other things going on- tired ALL the time, abdominal bloating and discomfort on left side of abdomen (that I have been told is probably IBS), pain up/down right arm, intermittent pain in lower back, intermittent pain in legs while laying down, itching periodically in strange areas (especially at night), occasional sweating (but not to the degree that i'd call it night sweats), occasional pressure in chest or S.O.B. when laying down (but I'm a little fluffy, so I thought it could be because of that and my chest size). Then, strangely enough, I started getting pain in right shoulder and neck during intercourse if I was laying in certain positions. That's when I told my husband that something is not right, and I have to get it checked out. I made an appt with a new PCP but couldn't get in fast enough for me, so I made an appt with an ENT.
1st appt w/ ENT: "it's probably muscular. I feel the node but it really isn't that bad. To make you feel better, I'll order a CAT scan".
Cat Scan w/ contrast results: 1.1x0.7 cm lymph node, "probably reactive benign" with several "smaller chain lymph nodes throughout", mild tonsillary hypertrophy (I had my tonsils out when I was 12), yada yada. I got a copy of my CT on disc, figured out how to work the program after messing around w/ it, and measured some other lymph nodes around the one I was complaining about- 1.7x1 cm was the largest behind s.c.m muscle (according to my calculations, of course)
Had appt with PCP in meantime while waiting for ENT to read CAT- blood work comes back with mild anemia (H&H 11.2 and 32.2), SED rate 28 (supposed to be under 20), very slight elevation in percentage of neutrophils and monocytes but wbc count normal (9.0), platelets slightly elevated @ 406. They say they'll repeat labs in 3 months.
F/U with ENT: "CAT looks ok"- but then he feels around again and the node is more palpable this time. He says "well I guess you want it out, don't you"- yep, sure do.
Just had my excisional biopsy done on Thursday and am waiting for the results. Turns out there were other nodes that were noted as soon as he went in that didn't show on CT, so he took those out too along with some "fatty tissue". My mom says he said that one was hard so he took it out, my grandmother doesn't remember that part of the convo, and I was still sleep in PACU so I have no clue what he took out. I just know it feels like he cut a hole in my neck and he took out more than we expected. Oh, and to make it stranger, my anniversary was yesterday so I made do to spend time w/ my hubby and that weird neck pain wasn't there anymore- go figure.

Now I'm waiting for my f/u appt on Friday- haven't heard anything from office yet. I'm thinking that's probably a good thing, but back of my mind keeps saying "what if it's taking longer to get results" etc. etc. I'm really prepared for anything- actually I've probably prepared myself more for bad news just because I feel like I can't get disappointed otherwise. Everyone else says "it's probably this or that" but they also didn't think there was anything wrong when I was saying there was to begin with.

I guess I'd just like an opinion from someone who's already experienced this "waiting process", regardless of outcome. Does any of this sound familiar or similar to your experiences and what was the outcome? I suppose I'm trying to further mentally prepare one way or another and maintain that comfortable state of "numbness" until I hear an official word (that hopefully is right and not a missed dx or anything).

Thanks for "istening" to my rant! Any answers are appreciated.

Fox0r · Regular Joined: 21 Aug 2009 Posts: 20

KCLee,

Sorry I can't be of more help. I too am playing the waiting game. I had my excisional biopsy on Saturday. Doctor told my mother the lymph node they pulled out was the size of a walnut. Preparing myself for the worse, so that it's not a let down if something happens; but hoping for the best.

I called my doctor today because I had a reaction to the Vicodin they put me on and they told me they did not have the results in yet. I asked the nurse if they would call me in before my scheduled appointment in the event that they found cancer. As such, I'm praying I do not get a phone call tomorrow.

I will pray for you. Best wishes.

Sincerely,

Aaron

joepet · Senior User Joined: 18 Dec 2008 Posts: 372 Location: Japan

Hi KC,

Sorry you have to be going through this. I'm not sure whether I would say that your doctor was extra cautious or extra aggresive. Given your history of infection, I would think that that is the most likely cause of your enlarged nodes. I would guess that the chances you will find cancer are quite low, but you will know the answer soon enough.

Good luck, and hope you get the news you want to hear.
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

ChemoMan · Posted: Wed Sep 02, 2009 6:29 am Post subject: Re: reassurance, anyone? :)

Hi KCLee

Sorry to hear of your issues. It all sounds a bit sus and I am not surprised your Doc is very serious about this. Don't be too concerned the fact that you have a proactive doctor is very promising. As Joepet said this is most likely not cancer but you never know.

Rule number 1 is Don't panic....rule number 2 is dont forget rule number 1 Very Happy

Don't think about this until you get your results, there really is no point. You can read joepets and my stories if you want...the links are in our sig...they should give you some solace.

we are always here to help, hopefully you won't need it Wink

Good luck

_________________
Age 53
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

KCLee · New User Joined: 01 Sep 2009 Posts: 5

Thanks so much for the positive vibes. Another day has gone by and no call... I did have to call the office today (but I didn't ask if the results were in-I'm proud of myself for that). The area of my incision started getting fairly uncomfy today- increased pressure in my neck and the swollen knot of "muscle"(?) that is just above the site felt like it was swelling a bit more, so I called to see if it was ok to still wait till Friday for my appt. I think I aggravated the site with work (I'm an RN but I talk on the phone all day doing case management for high risk obstetrical patients)- they said it can probably wait till my appt, and didn't give any additional info re: the results. My arm has been uncomfy today too- and I found another lymph node about the size of a penny in my arm near the inside of my elbow just below the end of my bicep (cubital node, I think). I had one of my peers feel it and she was able to palpate it without difficulty. Since it is in the right arm, I'm thinking it may be a little backup of the nodes secondary to the surgery, so I'm just watching it to see if it worsens. No sense in adding fuel to the fire of my already overactive mind/imagination.

Nonetheless, thanks for the quick responses... I'll definitely post what the outcome is from the appt.

aisha1 · Posted: Thu Sep 03, 2009 4:43 am Post subject: Re: reassurance, anyone? :)

Biopsy results are 'the big one!' and it is horrid having to wait for them.

Just hang on and they will be in soon. They have to slice the cells, then dye them, they need a macroscopic view, then a microscopic view, then they start to test the cells to see what they are reactive for. They treat them with different chemicals and then have to look the next morning to see what has happened. So it always takes a long time whether the result is positive or negative.

I know that this is hard for you. This part is hard for everyone, so we all know what you are going through right now. You will soon have answers.

Good luck and keep us updated.

KCLee · New User Joined: 01 Sep 2009 Posts: 5

I just got out of my MD appt- preliminary report says that he took out section of my parotid gland and then some fatty tissue with some small nodes (not enlarged- like 0.5cm). He thought that the initial node I was complaining about was off the parotid, so I suppose that is why he took out the section. So far so good- nothing out of the ordinary. He's still waiting for another report to come that he said will be another week or so.

I'm slightly frustrated because he didn't take out any of the other enlarged glands that DID show on the CT- he took out these small ones that didn't pick up. That doesn't make alot of sense to me, but he's the doc. I am just hoping that the remaining ones that were already enlarged don't worsen because then I'll have to do this all over again and the first time wasn't fun at all. Add that to the fact that I still have no idea what is causing this "inflammation", so I feel like we're back at square one.

Nonetheless, my next f/u is in 2 wks- he said he should have the other report by then so at least I will have confirmation that there isn't any problems with the parotid. 1 thing I can check off the list! Very Happy

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