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Not so good news from the Doctor

MandaJarvis11's picture
MandaJarvis11
Posts: 37
Joined: Feb 2013

Hey guys! So I basically had to bug the Cancer Center to give me results from my MRI it was rather annoying. I should be able to recieve those results fairly quick. But i did recieve a call from my Doctor today. Saying that the mass on my left lymph node grew from a 1.5cm to a 3.4cm, and the new lump they found on my right is a 3.2cm! I have a biopsy finally on the 27th. It's frustrating that I have to wait that long but I do realize there are alot of people going through similar situations and the place is booked. So now I am just freaking out. Luckily I have my dad home to support me and hug me. I just don't know what to think right now. People are telling me to think positive and I was until I went from being told I was fine to "this is something to worry about now amanda" .... I don't know :(

Machir
Posts: 32
Joined: Mar 2013

Sorry you got that news Amanda.  I've been there and I know it is scary.  What you are going through just plain sucks.  I'm glad your dad is there.  Give him lots of hugs.  You need them and he needs them just as much.  It's OK to do some crying.  Talking about it helped me.  If there is one thing I can tell you from experience its this --- it sucks but you will get through it.  I was a wreck waiting to find out what I had and at times you will likely be too.  That's OK.  There's a saying for how to deal with big problems...."How do you eat an elephant?  One bite at a time."  How do you deal with waiting for a biopsy report?  One day at a time.  For what you are going through it might even feel like one hour at a time.  Find ways to keep yourself busy.  Put some effort into doing what you like to do.  When your mind gets trapped in a loop of 'what if's' remember to drop into the mix that even if it turns out to be the evil C there are many possible positive outcomes for you.  Hang in there young lady and keep us in the loop.  Prayers and love headed your way.  Mac 

MandaJarvis11's picture
MandaJarvis11
Posts: 37
Joined: Feb 2013

Thank you so much for your kind words Machir! Means a lot. Its quite scary thinking about the possible outcomes of this. But in the end I will finally have the answers I have  been looking for! It'll be 6 months in april! It's about time I found something out! I am just scared 3.2 and 3.4cm are big right? The doctor said since I did not get the dye injection in my CT scan that might not mean they grew and that they were always that size and just werent able to tell through the CT scan. And that the MRI is more clearer? I am not sure. Just those sizes scare me!

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

I know everything you can think of from A to Z is going thru your mind. When we deal with the unknown its always the way it is. Now its just the waiting game to see the results. It's hard I know, but you can do it. Hang in there. We are hanging with you. John

anliperez915's picture
anliperez915
Posts: 741
Joined: Sep 2011

So sorry Manda,

this waiting for the Dr's to do something about your situation is soooooo fustruating to me! I don't understand how some docs just let more time pass when you have lumps that are that big...Wouldn't they want to know what is going on as soon as possible?? Sorry I'm not helping, I just get really fustruated about certain situations that some people have to go through just to get dx. Just hang in there and like Mac said even if it is the big C, it is very curable and treatable. I remember the first time I heard the word Oncology, I immediately knew that I had cancer. I didn't even doubt it for a minute but since then I've learned so much and I know that I will be fine. It doesn't have to mean a death sentence. There is hope, many new medicines out there and you have so many things going for yourself...you're young, I'm thinking in fairly good health, and even if that wasn't the case (look at my situation). I'm almost sure that you will be ok! Take care and please keep us updated (((HUGE HUGS))) Sweetie

Sincerely,

Liz

Machir
Posts: 32
Joined: Mar 2013

Manda the first thing I should do is apologize for messing up your name. Sorry about that young lady. On your node size they do sound large enough to be concerning but a CT without contrast isn't as accurate and they could find they are different with a better scan. When I was diagnosed my largest lymphnode was 7.2cm and everything worked out for me with my treatment so even if these are the right sizes it may not mean anything too terrible. Hi Liz....I read your bio. You've had a lot to deal with in your realtively short life. For you to be sharing encouragement wtih others tells me you are a speacial person. I share you angst wtih doctors. Maybe we hold them to too high of a standard because often they do great but I can't count the number of times I've just shook my head over things. My friend has a saying --- someone practicing today really is the worst doctor in the world and you might be seeing him. Manda if you ever really get concerned over things moving too slow grab a copy of your medical records (if you call them they'll get one ready for you) and take it to another oncology practice and see what they say. Typing this brings up a question. Manda you are seeing an oncologist at this stage, right? Seems to me that you should be with what you already know.

allmost60's picture
allmost60
Posts: 3151
Joined: Jul 2010

Hi Manda, 

Machir and Liz have said it all...not much I can add to their thoughtful comments to you. Right now I am dealing with shingles and can't seem to deal with anything else at all!~ The pain is just awful! Frown So...I will keep you in my prayers and think positive thoughts. Hang in there sweetie. Love, Sue  (FNHL-2-3a-6/10-age 62)

 

 

MandaJarvis11's picture
MandaJarvis11
Posts: 37
Joined: Feb 2013

I have had shingles they are painful, I had them last fall. It was awful.

 

Yes I am seeing an onocologist, he's the one I can't understand because he is not from here. I am keeping my head up and I appreciate all the positive thoughts. I have been sick to my stomach all day :( But I'll be okay, I know there is worse cases out there with people suffering more than I am so I consider myself lucky! And pray for all those who are less fortunate than I am right now!

Machir
Posts: 32
Joined: Mar 2013

Sue when I read your comment I actually said out loud "come on" thinking you've had plenty to deal with and shouldn't have to deal with shingles.  I'm sorry you have them.  I have heard they are terrible.  But you, veteran of FNHL, are more than a match for shingles.  Hang in there.  BTW the "come on" phrase entered into my life when I looked in the mirror while I was doing my CHOP - R.  I was pasty white.  I'd lost my hair.  My way of coping with the nausea was to eat....a lot.....and I'd gained 40 pounds.  Not a pretty site but I was used to the look.  One day when I got up I looked in the mirror and knew something else had changed and not for the better and I just said "come on, really, I need more to deal with?"  It took my wife a few minutes to figure out what it was.  My eye lashes had finally fallen out.  Who knew they made a difference in how a person looks (well maybe the zillion commercials I've seen for eye lash make-up could have clued me in).  We know you are tough.  We know from 2,759 post that you are a caring and giving person.  Why do bad things happen to good people.  I don't know but I know you'll handle it.  Good luck.  I'll be thinking about you.  Mac

anliperez915's picture
anliperez915
Posts: 741
Joined: Sep 2011

Hi Mac,

Thank you for your kind words, I really do appreciate them! You take care and welcome to our group

:)

Sincerely,

Liz

jimwins's picture
jimwins
Posts: 1977
Joined: Aug 2011

Hi Manda.  I can't add much to what has already been commented by the good folks here.  I am glad your Dad is with you.  I hope you get answers soon and as you know already, youi're not alone.

Hugs - Jim

Joemory21's picture
Joemory21
Posts: 40
Joined: Feb 2013

I know all about the waiting but it will come to an end. Like everyone has said one day at a time and we will all answer any questions we can.

Jonathan

jceleste31's picture
jceleste31
Posts: 36
Joined: Mar 2013

i understand how you feel just like everyone else here and everyone pretty much said it all....my surgical biopsy is scheduled for the 21 st so i understand the waiting time and how ridiculous it is to wait that long for it to get done but im just glad i can get it done and finally get some answers. Some ppl have to wait longer sometimes to get their biopsy so at least its this month and not much longer till the 27th. im terrified to and worrying like crazy specially cause i have been dignosed with cancer before so its very possible but just stay calm do something to get your mind off of it. were all here for each other big hugggssss to you and your in my prayers xxxxxxx

MandaJarvis11's picture
MandaJarvis11
Posts: 37
Joined: Feb 2013

I appreciate all the positive vibes I am getting thank you! :)

 

 

....Does anyone know what a needle biopsy intails? And how long it takes to get the results back?

jceleste31's picture
jceleste31
Posts: 36
Joined: Mar 2013

my aunt told me to avoid needle biopsy cause they are not always 100% accurate so the doc canceled my needle biopsy and now im having a full biopsy surgically where its very accurate and effective plus they take it out....the needle biospy doesnt take out much tissue so its not always accurate and it takes at least a week to find out anything from pathology is what my doc told me. i wanted answers and dont want the run around so im makin sure i get the right tests done so i can get accurate results and not have to get another biopsy done cause eventually u have to have it taken out anyways....well good luck tho....hugggsss to you xxxxxxxx

rescue911chick's picture
rescue911chick
Posts: 55
Joined: Mar 2013

I'm going through a similar process as you, wanted to wish you luck and let you know you're not the only one waiting for answers. It definitely helped me to know that there are others going through this "with me" and so far everyone in this group has been amazing.  One thing I wanted to tell you is that my surgeon was going to do a needle biopsy but I saw an oncologist who drew me a picture of a lymph node & showed me how little material is removed with a needle. He said it would most likely come back "inconclusive" and I'd need an excisional biopsy anyway so he had me schedule that instead. Why go through 2 procedures if you don't have to, right? Anyway, I pray you get some answers soon, my oncologist now has me doing the "watch & wait" for now & we're going to run the tests again in June barring any changes before then. Please let us know how it goes!

MandaJarvis11's picture
MandaJarvis11
Posts: 37
Joined: Feb 2013

It's funny you should say that because others have as well. So I asked my oncologist and he said because it's so deep in my lymph node and neck that the needle biopsy is my best option. And he said if I was not comfortable with that, he would send my files to another Cancer Center in Rochester NY. Now if I did that I would have to drive an 1.5hrs to get there just for them to say we want to see you back in a week/two to watch it. I have been dealing with this for 6 months now, if anything this is all I want. I need answers. I am so sick of people babying me and feeling bad for me about this. I want my life back. If the results come back that I do have the terrible C I will fight it with all I have and I will finally be able to move on with my life. I just want an answer. If I have to keep running tests so be it. I just don't want to start all over again with another doctor miles and miles away! :( I am already overwelmed with over $1000 dollar medical bills already. Thanks for the information though miss! I truly appreciate it!!! <3

 

.....I although have done a ton of research at the library and I know I am not a doctor but I believe I just have calcium deposits in my lymph nodes. And I just keep telling myself that until I hear different. It's very common I guess? Its comforting lol at least thinking I know whats wrong with me since I have been in the dark so long!

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