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Danielle1975
Posts: 1
Joined: May 2013

Hi I just wanted to hear if anyone can share their story or symptoms before diagnosis. 3 years ago my ent removed a lymph node from my neck, only one of the few that were swollen. everything came back negative which was a relief but I still have swollen lymph nodes all on the right side of my neck and back of neck. I've had a mri and Catscan of the stomach area and it seems the lymph nodes are just in the neck area. Last year I found one by my collar bone, movable and hard. The doctor will not do a needle biopsy because he says its too small..the biggest lymph node is 2.0cm and it's just scary there is no answer to why I have them. I do get tired, no weight loss, only time I have had night sweats is during my menstrual time. I've had bronchitis a few times, and a cough here and there. It's just quite scary because I've had blood tests and there is no reason for all these lymph nodes. I'm just curious what the size of lymph nodes were, did they keep getting bigger? I'm only 37 and it's a very scary topic thanks 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1216
Joined: May 2012

Danielle,

Sorry about  your diagnostic frustration.  It is a common thing.  I was a heavily-involved stage 3 at diagnosis, but I never felt a node ANYWHERE, ever, even AFTER diagnosis. In fact, my family MD checked me for nodes just prior to my CT, and felt NOTHING initially.   He later said, "I might feel a little something here."  My biopsy soon thereafter from my armpit was the size of a golfball.  My next door neighbor has had a node the size of a baseball cut from his amrmpit recently, and all of his tests since have been negative.

Accordingly, I attribute NOTHING to touch exams. Only a biopsy has any meaning, in my limited experience. 

I would go and get another doctor TONIGHT, however, based upon what you wrote above.

My cent-and-a-half-worth,

max

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1216
Joined: May 2012

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Rocquie's picture
Rocquie
Posts: 523
Joined: Mar 2013

My diagnosis and treatment happened so quickly, I barely knew what was happening. Nine months ago I was perfectly well, had just passed my annual physical with no problems and had barely heard of lymphoma. I have Follicular Non Hodgkin Lymphoma which is considered indolent, or slow growing. Something happened to transform my lymphoma to aggressive. I got very sick very fast. I thought and my doctor thought that I had an upper respiratory infection. After 2 rounds of antibiotics, my health continued to decline. My symptoms were constant fevers, shortness of breath, and increasing weakness. I didn't just have night sweats, I was sweating all the time, which is odd because I am normally very cold natured. I did not have any obvious swollen lymph nodes that could be seen or felt. (I had lots the CT scan could see). I also lost weight, about 20 pounds before diagnosis. It turned out that my spleen was very, very swollen. It was pressing on my lung, which is what caused the shortness of breath and also pressing on my stomach, which is why I couldn't eat much and was losing weight. 

I wish you luck with your health care concerns and may you have answers to your questions soon. I have learned there are many types of lymphoma, so it can be difficult to diagnose.

(((Hugs))) and prayers to you,

Rocquie

 

Julienne
Posts: 3
Joined: Jun 2013

I'm also 37, so I know how scary this is.  I was diagnosed with stage 4 Hodgkin lymphoma in April.  All of the symptoms I might have had I attributed to something else.  I have hypersomnia, so being tired is normal and night sweats are a side effect of my epilepsy meds.   I think the largest of my nodes was about 2.2cm or so.  They found mine becuase I was having lower back pain.  When they did an MRI for that, they found some bulging disks below a few vertebrae that had some cancer cells in them and also on my hip bone.  The CT showed issues with the nodes in my neck, groin, and also stuff in my liver and spleen.  I didn't have any nodes that were bigger than 2.3cm at that time and the one they biopsied with a needle wasn't hard.  The CT was done a month before my PET scan (I had a 2.5 week vacation scheduled and I wasn't going to give it up), and I know it moved up to some thoracic vertebrae by then, but I honestly have no idea how big anything was by that time.  A week after my first round of chemo, they said they couldn't feel the nodes in my groin anymore, so I'm assuming they weren't very big.  My doctor told me that I was only walking around with all of this for maybe 6 months or so.  If the back pain hadn't started, I have no idea how much longer it would have taken to find out there was a problem.  I was only just starting to lose my appetite before chemo, so I had no weight loss.  Also, all of my blood work has been in line with what one would expect to find with my diagnosis.  If you're really worried, go to a couple of different doctors to get second and third opinions.  

 

 

 

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

Hi Danielle,

So sorry to hear about what you're going through!!! I'm a little older than you (41) and have been going through something similar. I have multiple enlarged lymph nodes that showed hypermetabolic activity on a PET scan in February 2013. They biopsied one from my right underarm in March & it came back clear of lymphoma. Blood work was clear of any infection or virus (and they ran them ALL) My oncologist put me on the watch & wait plan which is very frustrating, I just had my follow up CT 2 weeks ago and it showed all of the original lymph nodes are stable/not growing. It also showed a few new things too but I'm not sure what any of it means yet.

I've developed other symptoms as the months have progressed, night sweats, extreme fatigue, no weight loss though. My onc was going to have me repeat my CT scan in September, but after I complained about the fatigue wearing me down my onc decided to run a ton of blood tests that I'll get the results for this week. Nobody wants to be sick, but I'm at the point where I'm praying for them to find something so I can move on towards getting my energy back. Limbo stinks enough on its own, being wiped out 24/7 is the worst.

I'm glad you found your way to this board, everyone on here is amazingly supportive & caring. One of the first things someone shared with me on here was get a 2nd opinion. It took me 3 months to actually go through with it, but that's what I'm pursuing in the next few weeks. I suggest the same to you. I only saw an oncologist because I faxed my PET scan results to one & he asked to see me within 2 hours of receiving it. #1 if I hadn't done that the surgeon was only going to do a needle biopsy.  The onc said they wouldn't get a big enough sample & I'd wind up needing an excisional biopsy anyway so why go through both? The needle biospy was cancelled & we did an excisional. #2 if my PCP saw that node was "clear" would he have ever sent me to an oncologist? Not sure about that, but life is too short to gamble with your health. Get your answers, as most say on this board be your own advocate. Good luck!!

Sherry

micah00
Posts: 13
Joined: May 2013

I had swollen lymphnodes on my left side around my collarbone. When I noticed it at first it was the size of a quarter after 5 weeks it was about the size of a lemon and thats when I went to the doctor. I was diagnosed with stage 2 hodgkins lymphoma and my only symptom was alcohol. I would have 3 drinks of 1 beer and would have the worst headache. Hope this helps ya stay strong

micah00
Posts: 13
Joined: May 2013

I had swollen lymphnodes on my left side around my collarbone. When I noticed it at first it was the size of a quarter after 5 weeks it was about the size of a lemon and thats when I went to the doctor. I was diagnosed with stage 2 hodgkins lymphoma and my only symptom was alcohol. I would have 3 drinks of 1 beer and would have the worst headache. Hope this helps ya stay strong

jo66
Posts: 4
Joined: Jan 2013

Hi every1,

 

Wenever i cm over here, i get strength frm reading ur experiences.. a big thanx to evry1 whos out here, sharing n caring fr each othr.. we hv bcm a big family Smile

My mom underwent splenectomy n jan 13.. after dat she ws pretty normal.. most of her symptoms lyk tiredness, weight loss went away. her next follow up is n next week.

Bt nw shes strtd feelng tired, sleepy, weak all over agn. Shes hvng Marginal Zone Lymphoma Stage 4.

Can any1 guide m on dis?? Is it dat her lymphoma s hauntng back??

GalacDad's picture
GalacDad
Posts: 40
Joined: Aug 2010

Danielle

Glad you have found this site, sorry it was under these circumstances, everyone here is very thoughtful and helpful with what ever you may need or question.

I would suggest that you receive second opinion, It souonds like your nodes are localized to the "upper hemisphere" which is a good sign you might only be in the beginning stages, but a Cancer specialist is the one that would make that diagnosis. I  had no symptoms when  my diagnosis came back positive 5 yrs ago. I had gone to my Primary Care Doctor because I was having problems getting rid of a sinus block after a long flight. She had noticed a single lump at my lt collar bone and immediately sent me to a surgeon for biopsy work. the needle biopsy was clear, and all my blood work was clear so they went to an antibiotic regiem, swelling changed slightly and a full biopsy was completed with positive results for HL. when I started chemo a month later the nodes in my neck had swollen and felt like a bunch of small grapes. Mostly on the left, but some were starting on the right. Other than that I was symptom free, my Oncologist said I was in great shape and startedt treatment  a month after.

I have seen that some of the Docs willl go for a wait and see approach, NOT GOOD! Get a second or third opion if able,this needs to be taken care of as fast as possible.

Dave

girliefighter's picture
girliefighter
Posts: 218
Joined: Mar 2013

Danielle,

I will be 37 in about 2 weeks, so you might as well say I am the same age...lol...no use holding on to 36 anymore.

I was diagnosed in March with stage 3 follicular lymphoma- symptoms were a swollen left node on my neck, very fatigued other than that i showed nothing, but was told that i have had this cancer for years<---scary

I wish i had weightloss, but no luck..lol

I wish you the best of luck and will pray for you

XXXOOO

Carie

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1216
Joined: May 2012

Carie,

I would guess you to be 22, maybe 25 at the most.

I have the opposite effect on people: I just turned 57, but people estimate me to be 70 !  As I am told truckers say, I have "run some rough miles."

Stay young,

max

girliefighter's picture
girliefighter
Posts: 218
Joined: Mar 2013

Max,

I knew I loved you, but my love just got stronger as soon as I read that you thought I was so youngWink.....lol...

Honestly the last year has put some rough lookin miles on me too, I will take the old age over tumors and lymph nodes the size of gumballs or bigger though. I wouldn't trade any of this journey thus far, would do it all over again.

BUT I WOULD'VE BEEN LOST WITHOUT ALL OF YOU!!!!

XXXOOO

Carie

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

Hi Carie,

Just wanted to say Hi, hope you're feeling ok with all the treatments. I'm also turning 37 this 29th of June, I'm actually very grateful with this B-day because it only means more time enjoying my kids and family :) Hugs sweetie and keep up with your good sense of humor!

Sincerely,

Liz

girliefighter's picture
girliefighter
Posts: 218
Joined: Mar 2013

Liz,

Hi...I must say we have the best birthday ever in the world....hahahaha...I am also grateful to be able to chalk up another year, funny two years ago I promise you I would've never said that.

I am doing great, just had a treatment yesterday...hopefully only 2 more to go

How bout you? how are you doing?

XXXOOO

Carie

 

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