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View Full Version : Biopsy results yesterday "You're about to get Lymphoma"



lumpylady
10-19-2013, 05:11 PM
Hi guys.
Here's my story. I apologize for the length. It's been a long year.

I'm female, 29yrs old. I have had a swollen node in the left side of my neck for a few years, and last summer noticed a hardened lump under my left ear. After having my daughter two years ago, I have been losing weight and went from 140lbs pre pregnancy, I was up to 160lbs while pregnant, to now 96lbs. I saw a doctor and after pushing and feeling my stomach on the left side (which almost made me black out) she sent me in for an ultrasound of my neck and belly (she also did basic blood work and all came back normal). She said she thought it was lymphoma, but then said "you can feel all of this because you're so skinny". I had the scans, and the doc said everything came back normal. She referred me to a surgeon who said the swollen lymph node that I have had for a few years seemed unusual in the scans (she didn't elaborate) but she "didn't want to leave me with an icky scar" so we wouldn't do a biopsy and to watch and wait. Fast forward to March of this year, I started feeling more exhausted than before and noticed a cluster of tiny lumps above my collar bone. I went back to the doctor and she only saw me for a few min and said I was just skinny and mother of a two yr old and that it was probably all in my head. Around the same time, I landed in the ER for pain in my lower abdomen. I have Endometriosis and they did a CT scan and said they couldn't tell exactly what was going on but that "everything looked extremely irritated" so I had to come back for an U/S the following morning. They told me that it was probably just a large cyst and sent me on my way. A few months later in July, I saw a Gynecologist and I explained to her all my symptoms (weight loss, exhaustion, random fevers, and the swollen nodes) and she immediately said she wanted me to see an internal med doc. She said I had a huge lump in my groin area that was either a swollen node or a hernia (they still haven't checked that out yet). I saw the internal doc twice. At the first visit, she immediately said it was either Lymphoma or Auto Immune. She said since I was uninsured she would have to think of a proper game plan of tests to do and when I came back in a month she'd let me know what we were going to do. I came back for the follow up and she told me after thinking it over, she wanted me to see a behavioral health doc because she thought stress might have been the cause of my symptoms and said she could feel the swollen nodes because I was too skinny. At that time, I was having pain in my left arm and chest pain. The supraclavicular lumps seemed to be causing the chest pain and arm pain, but I wasn't sure. I went to the ER because I just wanted tests done and was so sick of being ignored. When the nurses were setting me up with an IV, I heard one say she knows this is Lymphoma but that she also thought it could be breast cancer so they sent me for X-Rays and a CT. They did blood work and said all came back normal. They told me to follow up with a primary care doc (which I didn't have because I had left the other doc) because I needed a biopsy to check for Lymphoma. I found a doctor and at the first visit she also said "I know this is Lymphoma" and sent me for more extensive blood work than I ever had to rule out other things. All came back normal except my ANA was very elevated. She said I needed a biopsy ASAP. She also sent me for an ultrasound of my breast because I had developed a lump there too and an U/S of my neck. The U/S tech said the breast lump "was probably just bone" and sent me on my way. I saw her again for the neck U/S and she said she couldn't get a good look and the cluster of lumps looked strange but she'd consult with the radiologist who said I needed to come back in 3 months to check their growth.

After a couple months of the biopsy getting canceled, rescheduled, forgotten about, I finally found an ENT who listened to me and I had surgery last Thursday to remove one of the supraclavicular nodes. Yesterday I went in for results and he said the lymph node was huge and benign, but reactive and it told them I'm about to get Lymphoma. He said there were no infections or diseases. That confused the heck out of me. He said I'm only the 2nd case in 16yrs he's seen this happen to and he would look over the other girls charts and consult with an oncologist to see how to move forward with this. I have to go back in a month and he said I would be monitored closely after.

I should also add, I got all my scans and info to bring to the ENT and after looking over all the paper work I saw they noted I had a lesion on my thyroid that they saw last year and it was still there this year and a lesion on my liver.

My biggest question, that I asked the ENT yesterday and he couldn't answer, is how is it that I have all the symptoms and am continuously getting more sick but don't have it "yet"? I asked him if it was possible that the node he took out was the wrong one and maybe another one would be malignant but he said no.

I also asked him what to do about my symptoms in the mean time and he didn't have an answer for that either. My left arm is aching so bad on and off and sometimes I can't sleep because of it. My left leg has been doing the same lately. And I still get chest pain on the left side. The fatigue is off the charts and I've been having night sweats on and off for a few months now. I forgot to add that the lumps have spread to more areas on the left side of my neck, groin, and now there's a couple on the right side of my neck and I still have the lump below my right breast.

Has anyone heard of something like this happening?

Thank you for reading all of this!

ChemoMan
10-20-2013, 04:33 AM
Hi

You story is similar to mine...you can read it following the link in my sig. In my case the second biopsy...also a large mass of nodes came back as reactive but benign. i was told later the biopsy result was wrong.

With a high ANA it could be an autoimmune disease and I am thinking maybe Lupus but hey I am no doctor. I would definitely get a second opinion on the path slides and I would be pushing for that with great vigor.

My advice is see another doctor, get that second opinion on the slides and push for another biopsy. I must add that this still could be benign but I believe your symptoms warrant further investigations now and not later.

Good luck and let us know how you go

lumpylady
10-20-2013, 06:20 PM
Thank you for replying!

They said they found no other diseases, including auto immune ones. He said the only thing it showed was that I'm getting lymphoma and we need to watch and wait. I'm really feeling uneasy about the results though, especially with all the symptoms I have and have been having. When I speak to my primary care did I'm going to see if I can get the large lump in my groin area U/S to see if it's a hernia or lymph node and maybe that can tell us more too. I'm also going to call the ENT back and ask to check stuff again, I may even ask my primary doc if she knows where to send it for a second look.

ChemoMan
10-20-2013, 08:03 PM
Hi

An ENT is not the person you want investigating this. Get a referral to a hematologist and get one as soon as you can, I can't stress enough how important this is.

Good luck

lumpylady
10-20-2013, 09:34 PM
I will ask my primary doctor if she can refer me if I can get in touch with her. I am uninsured and go to a very busy clinic so it's hard to get a hold of anyone. Thanks again!

Didee
10-20-2013, 10:23 PM
Any Surgeon can take out a node for biopsy. Mine was done by an ENT and it was after the results came back that I was refereed to my Oncologist.

lumpylady
10-25-2013, 01:09 AM
I spoke to my primary care doctor tonight. She said I need to call the ENT and have them send me to an oncologist. She said I can't get a second opinion because I don't have insurance. So I guess at this point I'm doing the watch and wait thing.

lumpylady
10-28-2013, 07:38 PM
I'm so aggravated! I called the ENT clinic to ask about the referral to an oncologist that my nurse wanted me to get, and they said they don't think they can do it and she'll have to do it.. which she doesn't have the authority to since she's a nurse. Being uninsured has been so difficult and so extremely frustrating because I have limited resources and no one can ever give me an answer. I keep being passed back and forth between doctors. This year is driving me absolutely crazy. They know I'm getting Lymphoma, but because I'm uninsured they don't seem to want to do anything about it and the health insurance from the affordable care act doesn't kick in until January so I guess I'm out of luck until then. I wish I could find one doctor who can put me on the right path.

Sorry to vent. It's been a hard couple of weeks since the biopsy. I've been in a lot of pain because of it and am so exhausted. It's been really hard caring for my 2yr old lately and I just want to get better.

lumpylady
10-28-2013, 07:40 PM
Oh also... I had posted this in the Lymphoma forum, but it was moved here. They know I am getting Lymphoma, so is it possible to have the thread moved to that forum so I can try to get more advice in case anyone has been through something similar? If not, that's ok. Just asking. Thanks!

ChemoMan
10-28-2013, 08:04 PM
Hi

Until such time as you are actually diagnosed your thread is best left here. If by some chance you are diagnosed we will move it. Despite what has been told to you there is a chance that you may not have lymphoma, I certainly hope so.

Good luck and keep pushing.

lumpylady
10-29-2013, 06:01 PM
A nurse from the ENT clinic just called and said she spoke to a different doctor there and they agreed I need to see an oncologist so they gave me a referral. I'm happy that I get to talk to someone who can give me some answers about all of this!

lumpylady
12-02-2013, 11:10 PM
Just an update since it's been over a month. Had u/s done of the large lump in my groin around two weeks ago and it's a hernia. My doc is sending me for a scan of all the swollen nodes down there soon (not sure why she didn't have them scan everything at once). Had follow up with ENT a little over a week ago and he is sending me for more scans of neck and I think chest because he found more swollen nodes in my head and neck and a large one under my collar bone on left side. He said if he refers me to an oncologist they're just going to want another biopsy done so he suggested I get another one. He said he can either go through the same incision, or my doc can have a surgeon remove a couple from my groin when they fix my hernia. Saw my doc briefly last week because of bad chest pain on left side, she ordered more blood work which I did today and I have another appt with her on Friday. She also agrees I need another biopsy and thinks the scan of the nodes in my groin will show something. Waiting for the hospital to call me once the neck scans are scheduled. Hoping to get things over with sooner than later. Not looking forward to another surgery!

Kermica
12-03-2013, 10:10 PM
lumpylady, kudos to you for staying the course under obviously difficult conditions. We tell so many people that come here that you have to be responsible for your own health and you are setting the example for what that means and how to accomplish it, so thank you for that.

It is my hope that this next round of tests and/or biopsies will determine exactly what is going on with you and that it is not lymphoma. There are still lots of possibilities, even when all the docs are looking in the same direction. If (and I hope not) it turns out that you do get this diagnosis, we will be here to support and share. Good luck with everything.

Good health,

kermica

lumpylady
12-29-2013, 09:23 PM
Thank you Kermica! It hasn't been easy, but I have learned to become a squeaky wheel so I can be heard.

A little bit of (another) update. I had the CT of my neck and chest a few weeks ago. The ENTs receptionist told me the results were normal and couldn't answer any other questions I asked her. Like, have any of my nodes become larger and how many more new ones are there. My nurse canceled my CT of my pelvis at my last appt (around 3 weeks ago). She said we had hit a dead end until I get insurance.
I will have health insurance starting Jan 1. My new plan of attack is to leave my nurse and the ENT and see a new doctor. I have already found a new primary care doctor that I will be calling tomorrow to try and get an appt ASAP. I am hoping that now that I have insurance, we can get things moving faster.
I have been having more chest pains on the left side, just above my breast and sometimes below. It has been happening every single day for the last 6 weeks or so. I have constantly told my nurse about it, but she keeps saying it's nothing. I have also been experiencing pain under my left rib, which used to happen and now is back and a little bit more painful than it used to be.
I don't drink too often, and only drink beer, but lately I have been experiencing pain in a couple of the swollen nodes in my neck while drinking and after.
I am getting more lumps all in my neck, and the ones in my groin are hardening and a few have sharp jagged edges that I can feel. There are also new ones in my groin and neck that feel like BBs (from a bb gun) but a little bigger.

Oh and my hernia has become larger and much more painful but my nurse has also seemed to ignore that too. It feels like the swollen nodes near it are pushing on it, and mixed with my Endometriosis cysts and painful periods... well, it hasn't been a good time with that at all.

So nothing new really. Just really wanting to get seen by new docs soon so I can get better because living like this has been really hard. I can't believe I started seeking help last summer and still do not have answers. It's extremely frustrating, considering all the money I have spent and all the debt I am now in because of it.

Sorry if I'v repeated myself from last updates or anything. My brain has been fuzzy and my memory is shot lately.

Will update again whenever I can!

Didee
12-30-2013, 12:03 AM
Another Doc is a good Idea. You are doing everything right. Good luck.

Kermica
12-31-2013, 02:02 AM
It hasn't been easy, but I have learned to become a squeaky wheel so I can be heard.

I've been doing that for six years now, keep it up. You (and only you)are the keeper of your health. The medical profession works for us, we are the customer, they are the vendor. It is important to make sure they understand that without being confrontational and it sounds like you are doing a great job in a very stressful time.

May 2014 bring you clarity and health.

kermica

lumpylady
01-14-2014, 06:09 PM
Update- I have health insurance! I saw my new doc for the first time last week. He is very kind and actually listened to everything I had to say. He sent me in for an echocardiogram because of my long term chest pain, extensive blood work (I've never seen them take so many viles from me before!), and I had to give a urine and stool sample. He sent me to a surgeon yesterday for the hernia and I have an appt with a GI doc in March. He said he needed to do all the tests since no one had done them before to rule other things out. The surgeon yesterday was also very kind. We discussed the hernia, and he asked me a few other questions and also thinks I have lymphoma. He told me to call my doc and ask him to send my biopsy slides from Oct somewhere for a second opinion and to ask for an oncology referral and possibly a pet scan. I will schedule the surgery whenever I speak to my doctor and we'll figure out if the surgeon should remove a node from my groin to biopsy while he's fixing the hernia. I called my doc after the appt and left a message asking for everything, so we'll see what comes from that. I am feeling very positive about this new team. Only a week in and we already are getting things done.
It's so sad how the other place had treated me. I didn't truly realize it until now. If you're unhappy with your medical team, keep searching!