It all started with a lump in my left breast. It was the size of a pea, it was hard and it didn't hurt to touch, it just concerned me that it was there. I kept an eye on it and a few weeks later visited my physician and was told it was most likely hormonal and to take high doses of evening primrose oil.
I did this for the next few weeks and eventually after visiting a close friend was talked in to seeing her physician and was immediately rushed in for a mammogram and ultrasound.
All the tests came back clear... I was relieved.. No cancer... woo hoo
Or so I thought.
I kept an eye on the lump and noticed several more in the side of my neck a few months later. They were hard and felt like small marbles at first. Then the glands in my neck started to get quite large yet they weren't sore and I didn't have a cold.
I was feeling really tired all the time, exhausted almost and would be left feeling totally drained after walking up stairs.
I went to have my yearly pap smear and was told that the lumps in my neck were not normal, that it is very abnormal for those particular lymph nodes to become enlarged. I was immediately referred to a Lymphoma Cancer specialist at one of the states largest Cancer Hospitals.
I met with the surgeon and was told straight up that it would most likely be nothing and not to worry. That he saw dozens of women each day with lumps in their breasts etc and 9/10 have nothing to worry about.
I soon became the minority.
Within days blood tests were done, ultrasounds, and then fine needle biopsy.
Now, something they don't tell you about a fine needle biopsy, they can not NUMB the area prior to taking cell samples, reason being, they might accidentally contaminate the area.
So with no local anesthetic or pain relief I had a rather sharp needle jabbed in under my arm, right into the soft, tender armpit and also into the side of my neck. Not once but at least 10 jabs each area and then the needle is quickly moved up and down to puncture the cells of the lymph nodes and to collect a clean harvest.
I wont lie and say it didn't hurt. It really did.
A few days later I saw the specialist again and was told I needed to have my lymph nodes removed as soon as possible. The large one in my armpit and a few in my neck, as they were the 'marbles' that I could feel. They were 'Reactive' meaning, they were enlarged and reacting to something happening in my body. The lump I had felt in my breast a few months earlier was a reactive lymph node.
That is when I heard my name and the word cancer in the same sentence.
It was lymphoma and they needed to now cut me open and get some of the lymph nodes out to see if it was spreading.
Lymphoma is a type of cancer. Lymphoma is cancer of the lymph nodes and I had no idea what my lymph nodes really did or that they alone could get cancer.
I think I just sat there and tried to smile at my specialist and I didn't want to cry or get upset, because I was alone that day, I would have to remember all that he had said to me.
I was told that your lymphatic system is the body's very own signal corp. It sends out messages to the rest of the body when something isn't quite right or is under attack. In this case, my lymph nodes were under attack. So they were sending out the signals to the white blood cells who act like little soldiers and they come rushing to the scene to fight off the bad guys, (the infection) and in the process your lymph nodes swell.
I was then told that I would need lymph node removal surgery asap and I think I must of just smiled, so my specialist then explained what would happen.
Your Lymph nodes are like little train stations all sitting along a train line, the lymphatic system express.
Each lymph node is attached to the line and they would need to snip a few of the nodes off along the line and then biopsy them etc.
I left thinking I understood it all. Looking back I didn't have a clue. I left in a daze, scared and slightly angry.
I rang my husband who was working and that is when I broke down. I felt angry when I heard myself say lymph node cancer. I had seen the phsyician, I went as soon as I found the lump. I had a mammogram, so it wasn't fair, this shouldn't be the news I was getting. I came home and just cried, slept and then went online looking for as much information as I could find.
There is a lot of medical research and papers but unless you have a medical degree, it didn't make a lot of sense to me. I then spoke to a dear friend who is a nurse who calmed me down and explained that lymph node cancer or Lymphoma is one the best cancers your could get, if you got to choose a cancer.
It has the highest success rate and is the least aggressive of all the cancers. Of course, left unattended it will destroy you.
Within the blink of my eye I was in surgery and after not drinking for 17+ hrs I was finally on that hard, cold bed, looking up at masked surgeons, nurses, specialists and assistants. Listening to them discuss my procedure, their weekend plans, my weight for anesthetic and then I was asked why I was there today. Did I understand my surgery?
I remember saying yes, felt the jab of the cannula enter the back of my wrist and then heard someone say my name and told me to count backwards from ten. I then saw my surgeons face as he told me to relax, and to trust him and to drift off. I am guessing I wasn't going under as quickly as they expected.
I awoke a few hours later and was told I needed to say my name, my age, my reason for surgery today and did I want some pain relief.
I was given a juice box, a cheese sandwich and then left to feel beaten, bruised and dazed.
The next face I saw was my husbands, who was smiling and trying I think to look calm.
I was told I could go home as I wasn't charted to stay in hospital, something I objected to but as my surgeon had gone for the day, I was talking to walls only.
I walked out the ward, down the stairs and promptly threw up from the pain, the painkillers and the shock of it all.
It was a long drive home, trying to get my mind out of the anesthetic cloud and trying not to breathe due to the agony I felt in my neck and under arm.
We arrived home and I went straight to bed. I awoke during the night with terrible pain and a swollen arm, my whole body felt tingly and achingly numb.
I was in so much pain I was rushed back to the local hospital the next morning and given more pain relief.
What They Don't Tell You
I wasn't told prior to surgery the amount of nerves they are going to cut to remove nodes. I lost a lot of feeling/sensation under my arm and around my chest, underneath the whole arm and shoulder. The sensation in my neck wasn't as bad but I have lost feeling there also.
It's been four months since my first round of surgery and every day I deal with pain in my arm, and electric shocks, swelling and more. The shocks are courtesy of the nerves regrowing and 'talking' to each other and the swelling is something referred to as lymphedema.
One thing I wasn't told was you can never have your blood pressure taken on that side of the body ever again. You are not allowed to have blood taken from that side of your body and you will experience swelling which is result of the lymphatic fluid draining into your arm. After the node is snipped from the lymphatic system line, it sometimes drains into the body.
Most days my arm isn't swollen but it is always sore. I have to hang on and support it when I am in the car, to avoid it flying around when we hit a bump, as it constantly feels bruised.
When I asked my specialist why this is, I was told that the nerves get pretty mangled about when they go in to remove the nodes in your armpit.
I know I needed the lymph node surgery and I am extremely grateful for it and for all that the specialists do, it would of just been nice to have a note when you leave surgery to explain what you might feel/experience so that you know it is normal to lose feeling , to get the daily electric shocks and stabbing pains etc.
Not knowing is the frustrating thing. So where to next? What do you do after surgery.
For me my lymphoma is low grade, which means currently it isn't high enough to warrant chemotherapy. I have to watch my stress levels and what I eat and listen to my body and if I don't feel well, go straight back to my specialist. Which I did a month back. New lumps which aren't lymph nodes have appeared. It could be a secondary cancer or just my body reacting to the lymphoma.
Surgery is scheduled and this time I have lots of questions that need answers.
If you have any medical emergency, a serious illness or are injured ask as many questions that you can, even the ones you think are silly or are asked a million times a day. It's your body, listen to it.
Elisa on December 26, 2014:
Please have sweet hubby post an update so we know how it went. Will be kenepig you in my thoughts the next few days. Shall be praying for peace and clearness (in the sentinel node biopsy). Big hugs from Gainesville! As the sun has shown brightly here today on Easter, He shall send a beam of light for clearness in the biopsy. He shall guide the Stronger Sarah.
DawnP on April 17, 2013:
Thank you for posting. I have been on so many sites in the past couple months, the information is overwhelming....too much at times, especially when you don't have real answers yet.
About 3 years ago, at age 39, I had my first mammogram which revealed a lump in my right breast and 2 enlarged lymph nodes in my armpit. The radiologist reported that they were highly suspicious and recommended a biopsy of the lump in the breast to start off with. The specialist removed the lump which was benign. No further testing or mention of the lymph nodes followed. Due to loss of insurance coverage, I never pursued it either. In February, doc sent me for a mammogram. Breasts were clear, but the radiologist wanted to do an ultrasound of the lymph nodes. Ultrasound showed the nodes had increased in size over the last 3 years and recommended a needle biopsy. After waiting a week, I finally heard the results today. Negative for metastasis, but reactive with Hodgkin Lymphoma not being able to be ruled out. A lot of wishy washy statements in the report which are very confusing. I am getting a copy of the report for myself as I'm afraid that my brain was not comprehending everything the doc said. I have had a sinus infection for about 2 months which I had taken a course of penicillin and two courses of antibiotic prior to the biopsy. According to all the reading, I'm assuming the antibiotics kind of rule out reactive to infection, but maybe not. Anyway, they are sending my screening, ultrasound, and biopsy results to a cancer specialist for further review. I was told that they will probably do a biopsy to remove the nodes in order to test. I guess it's a wait and see which is at this point harder than just hearing bad news. I have had night sweats (not drenching though), itching, dry skin, and extreme fatigue....but I'm also diabetic which can cause some of it. I feel like every time I see a symptom, suddenly I have that problem. Starting to feel like a hypochondriac. :(
Almost forgot to ask....did your blood work show anything abnormal? I have high neutrophils and low lymphocytes, but not so high/low that it's alarming.
Pat on April 16, 2013:
I don't trust ONE doctor's opinion. My sister had a mammogram which came back unusual, so they did another one with the same results, so they did another one with the same results. the dr decided to wait a few months to see if she had any change. She began feeling poorly and went to the dr several times, but felt like the dr thought she was a hypochondriac. She passed out one day and her son took her to Tampa General hospital. She had a wonderful doctor who ordered tests and immediately found she not only had breast cancer but stage 4 pancreatic cancer. She died 2 months later, almost 2 years after her 1st "unusual" mammogram!!!
Sam on September 06, 2012:
I'm having a llittle swelling in my right arm pit, blood tests done - all normal. Fine needle biospsy done and it was concluded that it was a reactive lymph node. No unsual cells found. Swelling is still there, its been 2 weeks now - I had antibiotic but didn't help, could be viral. Do you think I should be concerned?
Jordan on June 23, 2012:
Thank you. I've been to the doctor before about this a few months ago and he said none of my lymph nodes were swollen. They took me to physical therapy where the guy there toldme I have 2 disk pushin down on a nerve. Do you think that could cause a knot? I'm just trying to rule out lymphoma or something. But today for some reason I've felt naseous and can't quit burping and stuff. Idk I just got my self all worried. And figured I should talk to some one who's actually been through it to see what they think it is.
Jordan on June 23, 2012:
Thank you. It happened a few months ago also and I went to the doctor about it. He mentioned that none of my lymph nodes were swollen and signed me up for physical therapy we went one time but couldn't afford going 3 times a week. They mentioned something about 2 disks pushing down on a nerve. Could that cause a knot? I'm trying to rule put the lymph node thing.
Destrier (author) from Rural Australia on June 23, 2012:
It sounds very much like a reactive lymph node in your neck. I would wait to see what your physician says from the surgical pathology report. I'm assuming they did a FNB and full pathology report on the nodes. Reactive nodes can become enlarged due to the body wanting to fight the infection. Rest up and try and stay calm, as stress doesn't help with recovery. All the best.
Destrier (author) from Rural Australia on June 23, 2012:
Without a proper MRI or consult you could just be dealing with a strained neck/ligaments. Ligament tissue can get inflamed and will create a swollen lump. I would try a heat bag/ and or sports balm and see how that goes.
Best of luck.
Jordan on June 23, 2012:
Hi, I'm a 17 yr old female. A few weeks ago i noticed this knot on the top center of the back of my neck. Its right on the bone. You can't really feel it unless I lay down. I recently went to the health dept.for a physical exam they said everything felt fine. Just one side of my neck felt tense like I pulled a muscle or something. I have anxiety and have been stressed lately so I'm wondering if that could be the problem. I have no other swelling anywhere else. I have been experiencing neck pain on and off. & headaches. That's about it. When I get on google however I automatically assume its something bad since when you type a symptom in on google its always some form of cancer. I think I put it all in my head and think I have symptoms when I really don't. I was just wondering if you knew what this could be? Like I said you can only really feel it if I lay down. I'm thinkin it could just be from where I'm sleeping wrong or something.
Debbie G on June 21, 2012:
I have been suffering with a severe allergic reaction to what has recently been diagnosed as Kathon CG -methychlorothiazoloinone. A preservative found in shampoos etc -blah blah look like I've been severely beaten ....went to docs for steroids and mentioned lump in my breast. Couldn't find anything but sent me for check a s I was sure something wasn't right. persuaded consultant to check me though he couldn't find anything Good news - I was feeling phantom lump -bad news hidden cancer found by pure chance?!. Had surgery 2days ago but worried about tendor lump in neck just above collar bone same side - hope its due to disturbance. Original biopsy suggested not spread but waiting for more thorough exam. Had a couple of night sweats -could be my age 44?? Any views welcome.
liz on June 17, 2012:
Thank you for sharing your story.I felt as if I was reading my own story. everything you went through happened to me. Im 5 years in recovery and I still have numb spots under my arm and may 1/3 of the upper arm.
Destrier (author) from Rural Australia on June 17, 2012:
I am so sorry to read of all that you have been through and am praying for a quick and easy recovery for you.
Lymph nodes can swell for various reasons not all because of cancer.
It can be that your body is fighting another form of infection or blood disorder and the nodes are enlarged/reactive to help combat against that.
Lymph nodes can also swell if your body is fighting a staph infection or is run down. A node can be removed as it is showing a postive result on a FNB (Fine needle biopsy) but when they remove it and do further pathology it can show that it was reactive to other tissue or it could be that the node was remaining 'switched on' from a previous infection yet the body hasn't 'switched' the node back off. Unfortunately the immune system is rather complex.
It could be because of the polyps in your stomach. Without a full body ultrasound/MRI and fnb I doubt they would be able to tell. I wish you all the best and am here if you need to chat further. x
Destrier (author) from Rural Australia on June 17, 2012:
Hi there Sweetie,
Firstly let me start by saying that you are not over reacting nor should you be called 'Doc'. Unfortunately some times parents and adults get so focused on other things that they don't always see what is right in front of them.
Please do not use google to try and diagnose yourself. That is the worst part of the freedom of google. I understand how scared you are and on top of everything you have going on with your life and family, this really is the last thing you need. Please do not be scared by my story. I am still here today. Healthy, strong and back to doing what I love the most, taking care of my family and working.
People can have LOW GRADE LYMPHOMA and it is quite similar to having a cold. Your lymphnodes enlarge or become reactive, you can experience night sweats and low levels of energy. However low grade lymphoma can be found in 1 in 45 people. It won't kill you and your body will recover.
The hardest thing I found about reading your comments was how alone you sound. :( I have a 15yr old daughter and I guess this is why I wish I could just give you a giant hug and tell you everything will be okay.
Maybe try writing your mom a letter and explaining that
: You are scared
: You know she is extremely busy
: But that you need your mom right now, more than ever to make sure that everything is going to be okay.
: That when you are feeling well and safe, that you are more help to her and can support her with your siblings but that right now you need her support and understanding, not to be mocked.
I pray that everything turns out okay and remember you can message me anytime you need to chat. xx
Destrier (author) from Rural Australia on June 17, 2012:
It could be a lot of things from an infected hair follicle to a small infection in your armpit. The only way to determine if it is an enlarged or reactive lymph node is to have a FNB done. (fine needle biopsy).
A simple blood test by your doctor can also determine what your blood count is and where your levels are sitting. Try not to panic and just get them checked out. The beauty of the internet is you can research but please do not try to diagnose yourself. :) Leave that to the experts. I wish you well and am always available to chat more. xx
Megan on June 11, 2012:
Hello I am 14 years of age and I recently found two pea sized lumps under my left arm. Could it be the cancer you had?
mtmsplace on June 09, 2012:
HI, I just read all these and do pray for God to give you all strength. Dealings in this life is hard enough now days but when you get your health and life to fight for ,its a whole new ball game then!I have had a bad heart for some time now. Its because a nurse give me meds I told her cant have and give them any way, messed my top chamber up and on heart meds for life now!Yah, life can be tough! I have had three nodes swellon for a long time now, one under the rt armpit for 16 yrs they never checked says its ok and in Sept. 2011 I had one removed from my rt chest and I have one on my rt sholder by my collar bone! They took a piece from them and said all is ok. Just had a tumor took out of mouth its coming back, its ok, just had EDG/Colon check in same day and found 2 pylops one in stomach body and the other caira upper shut which means I could have lymph cancer some where but they say its all ok,then give me Mycobutin to treat Hpylori , so tell again why my lymphs are swelling up???????????????? Who do you trust and where do you go form here, except on your knees!
better of dead. on June 08, 2012:
Wow, I'm only 15 and have been going through with the whole lymp node thing for 7 months (I think). I've been telling my mother something was wrong for 7 months now.. And as you can tell, I've been waiting for that long and only ONCE seen a doctor. He didn't do much, just asked me questions and gave me antibiotics. I've finished them recently, but my mother refuses to send me there again. She said something about the medication is done and I'm fine, but It's gotten a lot worse! Actually, just last night my arm was hurting BAD! and noticed a lump on both of my elbows, and both my arms have been very itchy. There is slight tingling sensation in both arms, and no one takes me seriously. I don't think my mother has health insurance for me, that could be why she refuses. I get it, but she mocks me. Everyday I try to talk to her about it, she strains to listen. She gave me a nick name. "Doc" Since I go online and TRY to diagnose what I'm going through. I'm too scared to ask to go see a doctor because she tells me the same thing over and over. I think maybe sometimes I should just wait to die, and maybe my mother would finally understand. You're story scared me. The surgery and needles being jammed into your neck and arms. I'm fighting to hold back tears since I'm using my mothers laptop and she is in the room with me. I don't think I did anything wrong to be in this condition. I don't smoke, nor do I drink. I stay away from drugs and STILL A VIRGIN! I am though quite lazy at time, and haven't eaten a decent healthy meal in months now. I didn't ONCE believe I could catch any thing serious when I was little, and now I'm suffering towards something I don't even know what's happening! I have about 7 siblings. (Wow Right?!) Everyday is stress full. I try talking to ANYONE about this, but they seem they don't care. Maybe I am better off dead. /: Anyways, sorry about your pains, and I wish you with great respect. Don't give up.
Monicka on May 27, 2012:
I am 29 unmarried and healthy, past 2 weeks i have had low grade fever and rather rock hard lumps under my left jaw , right deep cervical and under the left collarbone with an esnophillic count of 11%.I feel drugged when I wake up and am very low on energy since this started. So far I have been put on a heavy dose of antibiotics for 11 days after which they will re check the count, the nodes and do the needle biopsy. So far is been 5 days and the fevers gone but my energy stil remains at an all time low and the nodes are as hard as ever.
At this point I am expecting pretty much anything and your write up has really helped me to understand what I should expect if things go this way. Thank you so much for sharing. Have tried to keep a brave front and hope to heaven that all this is over soon before I hear the C word.
Hope you aRe recovered and starting on some physio and health counselling to start back on a healthy life!
Jacky on April 18, 2012:
Thank u for sharing your story:) I hade surgery six months ago and removed left neck lymph node .It came back normaal.Now I have a other left lymph node swollen in left neck write above it about 2cm .What could it be?some neck and shoulder pain no other symptoms.Lymph node is hard and fixed in one area.
Hanan on March 27, 2012:
Thank you for sharing. This is very helpful for me when I take my son back to the doctor. He has 2 lymph nodes in his neck that haven't gone away, and like you he hasn't been sick or doesn't have any reason to have these 2 lumps sticking out of his neck. He did get an ultra sound & then was sent to a "specialist" so I thought, who did absolutely nothing but touch his neck. With your story, I can go back to the doctor and request more to be done. Good luck with all the continuous recovery & pain you're going through.
Donnie on March 14, 2012:
Hi, thanks for sharing and May God continue to heal everyone. Did your lymph nodes flare up and go down in multiple places throughout your body? I had a biopsy and blood work and all came back fine. Every week I get large nodes in different spots of my body the dermatologist does not have an answer
Nicole Forman from South East England on February 19, 2012:
I have had seven lymphs removed - they were only supposed to take one - and my arm is hurting quite a lot! I had two tumours in my breast and they wanted to take one lymph to test for cancer, but instead took seven. Just wondering how you are doing and whether the sensation has ever come back - i.e. did your nerves ever reconnect? Were you given any exercises to do following your surgery?
Sarah on February 10, 2012:
I have lymph node pain, and im scared its cancerr! Please pray that its not
Donnita on February 10, 2012:
Thank You for sharing! I currently have lymph nodes on the back of my neck, my left and right elbow and my neck. I went to the dermatologist and she said it does not look like lymph nodes. I took a chest Xray and blood work and everything was ok. The nodes went down and now they are coming back. I am so scared that it's cancer because my dad died of cancer recently and we did not know he was in his last stages. It was very vibrant and always on the go. He went into the hospital in October, 2009 and Died December, 2009, therefore they do not know where the cancer started. My dad use to have this knot on his neck of which he had drained years ago. After reading your story, I should get a second opinion. God Bless everyone who is going through this. The thought of not knowing is stress enough.
editorsupremo from London, England on February 07, 2012:
Thanks for sharing your story and struggle with cancer. I am sorry to hear about the unsympathetic care you received, and being sent home on the same day of your operation is apalling.
I had a lumpectomy and lymph node removal 12 years ago and in order to avoid lymphodema I had drains put under my right arm. This was to prevent my arm swelling at a later date. You obviously did not have this done, which is very bad. If you did you would not be suffering with a swollen arm today. I also stayed in hospital for 5 days.
I would ask for a second opinion on chemotherapy especially as the cancer was in the lymph system because it is through this system that cells migrate to other parts of the body.
Out of interest how many nodes did you have removed and how many were infected?
Try to stay strong and you will pull through.
I have a blog about cancer news and because of your story I'm going to write a blog about asking questions before and after cancer surgery.
elyse on January 17, 2012:
Thanks for sharing. I had a mammo a couple months ago ad they said everything was fine. I now have about 10 enlarged nodes in my left breast. We did an ultrasound they said don't worry. Now they are in my right breast and I am going to a breast cancer surgeon. I want answers for why this is happening
Kyra on November 03, 2011:
Thank you for sharing, I went to my Dr a while back because I have a ton of lumps, which he told me were lymph nodes. I had to have my blood taken and he said there were no cancer signs but he needed to run mor tests. Unfortunately I lost my insurance and haven't been able to check back. I'm afraid to have all this happen though :(
squeakycat on October 13, 2011:
Thank you for your story of your ongoing battle. My sister suffers from non-hodgkins lymphoma - it has been life altering. Good luck to you.
suegillespie on February 24, 2011:
Thanks for sharing. We recently went through Hodgkin's Disease with our son. Your site will help many. Keep up the good work.
rashad on January 11, 2011:
thank u for sharing ur info....
lately i ve an itching problem all over my body.. and sometimes a little pain sensation under ly left armpit. Tomorrow am going to schedual an appointmant with my Dr. i hope everything is ok.
Leni Sands from UK on August 21, 2010:
Thanks for sharing. Very detailed information from the point of view of the patient. Very helpful information for those beginning this journey.