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Same title as many I'm sure, I'm scared...very

Fae's picture
Fae
Posts: 22
Joined: Jan 2013

I came to a very real realization last night, and I can barely breath from my anxiety since. I decided to type some symptoms I have been having into a search. Every link, link after link, Lymphoma on every one that came up. I have had cysts on my neck since I was a girl, maybe 12. They never changed much, I never worried. My regular doctor then told my mother not to worry about them unless they ever grew and that was that. They have never grown, or least never enough for me to ever notice, but never went away either. 1 in particular is hard on my lower back hairline, upper neck about the size of a dime, but again I have never noticed any change over the years. I have been having night sweats off and on since the birth of my 3 rd son, about a year and a 1/2 ago. More frequently recently. I am tired, but I also have 3 boys, and normal stresses of life. My neck has been sore off and on for years, but about a year ago I noticed what I considered a hard spot, not lump, next to the smaller hard cyst on my upper neck, hairline. It is next to the spine, right side. I just realized if I press hard, it may be a lump, a larger one in comparison to the cyst, maybe 3 times the size, but hard to tell. I had always considered it a strain, a pull... The small one, I feel nothing. This newer hard spot, its sore, like a strain in a neck when pushed on. My entire neck feels strained in general, but its been that way for a long time. My shoulders go through periods of days or more where the itch a lot, where I cannot stop scratching. But its winter, when this began, the air did get very dry, though I can't say I have had this issue ever before. No fever that I know of. I made an appointment to see a doctor, but its 3 weeks out, I don't know how to do the waiting. I'm 30, married and I have 3 beautiful children, they need me, I feel a sense of terror right now. I mean I know no one here can say much without a diagnosis, but this doesn't sound great, right? Please, I need some honesty.

po18guy
Posts: 237
Joined: Nov 2011

Since you have had the cysts for years, and they are indeed cysts, I am wondering what would cause you to suspect cancer? There are innumerable conditions standing between healthy and cancer. I would say not to leap over all of them to suspect a malignancy. Your symptoms are still rather vague and the itching was likely the dry air. As well, it could be caused by skin sensetivity to soaps or shampoo. Lymphoma itching tends to be intense and there is little that will stop it. We are our worst enemy when worry enters in. The classic danger signs of lymphoma are spiking fevers, drenching night sweats, rapid weight loss and palpable nodes. But, you have a long history of cysts. Let doctor examine those lumps, as they are probably just more cysts. Do you have any difficulty with anxiety? If so, get it diagnosed and treated first! It will not help you in any event, and the stress can actually produce additional symptoms. We live in an age of worry and fear. Sooner or later, it takes its toll. Oh, and please try not to diagnose yourself on the web. Dr. Google always hands you a death sentence ;-)

Fae's picture
Fae
Posts: 22
Joined: Jan 2013

I call them cyst's but really, never actually told that. All the doctor said as a child was to watch them. But it is not those that worry me, its the new hard spot on my upper neck, its not like anything I have ever had. I did my research, its a limphnode (the spot where the hairline meets the neck) and its very hard and sore. I had mono as a child as well. The sweats are every night now, my whole body is soaked. I wake up and feel all over, my arms, legs, back, chest...  all wet. I am the type of person that doesn't sweat on a 90 degree day, so this is very out of the norm. The itching on the shoulders, I would scratch so much it would scab, and then I would scratch those and bleed. Though it seems to have subsided at the moment. I don't want to talk myself into convincing myself that I have this, I am just trying to wrap my head around these thoughts and fears and trying so hard to be realistic and slightly prepared I guess. I have never had anxiety, or so I thought. We chauked up some faiting spells that started with my 1st pregancy to everything but anxiety. Pregnancy, and when they continued I must have vertigo. But the night my fear swept over me, it was clear I have severe anxiety, full blown attack, couldn't feel anything in my hands and feet besides pins and needles, couldn't breath, my husband had to tell me over and over, "you are not breathing, breath!". My entire body was rapidly shaking, trying not to pass out again, worst episode to date, seemed clear what was going on after it was over. It was different for sure. I have always been 100% I thought, and now I realize I think I have severe aniety attacks and the possibility of cancer. 

jimwins's picture
jimwins
Posts: 1974
Joined: Aug 2011

Hi Fae and welcome to the site.  I agree with po18guy.  We can be our own worst enemies with worry/anxiety.  Please keep us informed and come here if you just need to vent/talk.  That's what we are here for together, to support each other.  You have to very careful about what you find on the Internet because it can drive you crazy - I know because I did that shortly after my diagnosis.  I got on anti-anxiety medication pretty soon and it was a tremendous help.  There are several good sites on the web on dealing with anxiety so you might check those out also.  You are human and even the thought of cancer causes anxiety so don't beat yourself up about it :).

Big hugs,

Jim

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hi, it is so easy to type in your symptoms and get over 50 things that it could be. I have been through two cancers and the last one I had no symptoms to speak of. It was just dumb luck that they found it. I have had I stiff neck for over a month now, it would be so easy for me to say oh no relapse, but I'm not going to stress over it. I told my doctor and she is trying to schedule a scan. We can't change the things that will be, please try not to stress over it........... please keep us informed Vinny

Fae's picture
Fae
Posts: 22
Joined: Jan 2013

Thank you all for the kind words, I am not good with waiting, at all. I just can't shake this, whatever it is I'm feeling. I hope its just fear and not instinct. Again, thank you

Fae's picture
Fae
Posts: 22
Joined: Jan 2013

Can anyone tell me if this means anything. 

During my last pregnancy, near the end of it, one of my blood work ups came back with a low white blood cell count. They told me if it did not come back up after the birth, I would need to be screeded for Cancer, but not worry, it was most likely due to the pregnancy. After the birth, they took blood right away. They said the white blood cells ct seemed to be working its way back up, so I did not need to worry about it. After that, I neglected to get checked again, and have another blood work up because I just assumed and believed what they told me, it was due to the pregnancy. I have read that Lymphoma will not show up on blood tests, is that correct?? So this is not a concern I should have?? Does low white blood cells mean anything? Any information would be appriciated. 

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

Hi Fae and welcome to the group,

I really hope that its something else and not lymphoma. I just wanted to comment on the blood work, I'm sure everybody is different but I was diagnosed because of my white blood cells being extremely high. They had been more than 3x the normal range for almost a year, at the time I had seen the same doc for about 4yrs and she never mentioned any concern. She left the clinic and I got assigned a new doc, she immediately noticed something wrong with my blood work and sent me to an Oncologist. He ordered an ultrasound of my liver and spleen and with those two test he told me that I had lymphoma. He later ordered a bone marrow and CT scan, i was diagnosed with splenic marginal zone lymphoma stage 4, tumors in spleen, liver and bone marrow involvement. I didn't have any symptoms no night sweats, itchy skin or anything. I felt fine, after a couple of months of being diagnosed that's when I started to feel like s$$t. Everything hurt, I had pain in my shoulders, elbows, abdomen area and lower back, I don't know if it was my mind making me sick or if it was the cancer! Just know that our minds can do a number on us, go to the doc and get yourself checked out! Take care of yourself and please let us know what you find out.

Sincerely,

Liz

Fae's picture
Fae
Posts: 22
Joined: Jan 2013

Liz, I know what you mean about the mind. I am pretty sure I am imagining some random itching and stomach pains. I keep thinking that I just feel a little off, "maybe" I'm nauseous, "maybe" not...  I mean who in the world says to themselves I'm not sure if I feel nauseous, I not sure if that is pain in my stomach. It is or its not! This will be a long few weeks...

GKH
Posts: 288
Joined: Jul 2012

i have NHFL. My only variance from normal in blood work was very slightly below normal white and red counts. Go get checked out. Its probably not cancer and having a test to show that will bring a lot of relief. The stress alone can make you sick. And on the outside chance it is lymphoma, its very treatable. Best of luck. I am not an emotional person but I am very touched. Wish I could say or do something to help. Be strong.

 

Garry

Fae's picture
Fae
Posts: 22
Joined: Jan 2013

Thank you Garry. If you don't mind me asking, how long have you had NHFL? How are they treating it? 

CountryGal7557
Posts: 165
Joined: Feb 2011

from my experience and from what I've learned, the lumps are not painful.    the fatigue is 'unexplainable' tiredness.   if you're well rested (even though you have 3 kids) and can't stay awake for a movie, in my situation that was my first clue as 'unexplainable' tiredness, but I didn't know it at the time.

Fae's picture
Fae
Posts: 22
Joined: Jan 2013

I found some very small lumps in my groin, actually, I had found 2 of them this past summer, but I thought they had gone away, until I checked standing up(hard to feel laying down) but they were still there, unchanged though from what I can tell. But on the other side, since I was really looking now, there are also 2 small lumps there as well, could have been there for a long time, or could be new. I just don't know. They are not painfull. I know none of this matters, I guess I just feel like it is all I can do right now. Trying to figure out my odds of this I guess. Thank you as well for the reply. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1001
Joined: May 2012

Fae,

I agree with what most have suggested above: You seem to be working your worry up into a bit of a frenzy.  These cysts could be a whole lot of things, and your WBC issue seems to have resolved itself.

There is no "way that lymphoma feels."  For one thing, there are over 30 major strains of lymphoma (five common types of HL, and over 25 common strains of NHL), each somewhat different.  I myself was diagnosed at Stage III HL, with a fairly uncommon strain.  My symptoms: NOTHING ! I never had a symptom ever, and never even felt a node anywhere (well except fatigue, and a thousand things cause fatigue).  I never had night sweats, never had itching, and so forth.  Using my case history, a person could reason: "I have no symptoms of lymphoma, therefore I have lymphoma !"

If I were you I WOULD follow up and get a definitve determination as to what the spots are, but do not worry yourself in the mean time.  You are too young and smart for that.  

Share what you learn from the doctors, if you are so inclined. 

Bless your dealings with the medical community. Another thing that everyone here willagree with is that you have to drive your own care. Sometimes you must become a little pushy to make doctors look at what needs to be looked at.   "Aw, don't worry about it" is not a medical diagnosis !

Max

allmost60's picture
allmost60
Posts: 3150
Joined: Jul 2010

Hi Faye,

 The "only" symptom I experienced prior to diagnosis was 2 lumps. One small one on my neck and a larger one on my groin. Never had night swets, loss of weight, or unexplainable fatigue as Janelle mentioned. Actually...I felt great. My PCP had me see a surgeon to remove the largest lump in my groin for biopsy and the rest is history. I was told the best way to know forsure what the lumps consist of is to have them biopsied. Once this is done you will have answers to your questions and fears. Please keep us informed and I'll keep positive thoughts and prayers for you. Love...Sue

P.S...stay off the web until you get confirmation of what your lumps consist of....you will go crazy otherwise.

(FNHL-2-3A-6/10)

GKH
Posts: 288
Joined: Jul 2012

I was diagnosed in 10/2011 but apparently had it for some years prior. I am being treated with Rituxan.

Fae's picture
Fae
Posts: 22
Joined: Jan 2013

.

Fae's picture
Fae
Posts: 22
Joined: Jan 2013

I will be going for blood tests tomorrow and I was scheduled for an appointment with a surgeon on the 15th. Feeling a lot of anxiety still. If I have to do the biopsy, I will have to pay out of pocket as I have a higher deductable insurance. Still not sure if I will just do the other type, but I want to be sure... just in limbo right now. Question: My doctor said the blood tests would most likely show if it was lymphoma, I thought lymphoma did not show on blood tests???  Confused.

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

Hi Fae,

I can only tell you about my situation, my wbc were very high. That was the main reason my PCP sent me to a Hem/Onc so he could get it checked, I know that not everybody has the same problem. I will be sending you lots of positive thoughts that everything checks out well for you. Take care and let us know what the docs say.

Sincerely,

Liz

onlytoday's picture
onlytoday
Posts: 583
Joined: Jun 2010

Fae

 

Sorry you are going thru all of this!  Just wanted to tell you that my initial blood work showed that I was anemic with no reason for it. No iron deficiency- just wasn't producing enough blood.  I also didn't feel well, couldn't put my finger on it but that's what prompted the blood work.  My doctor finally ran a CAT scan to explore pain that I had one night (we thought I had a gall bladder attacK) it wasn't my gall bladder but they found an enlarged lymph node , ordered a biopsy, etc.  That's when I got my diagnosis of Non-Hodgkins Lymphoma.

 

Everyone's story will be different.  Hopefully your tests will be fine and your biopsy will be negative.  Do your best to not worry too much- easier said than done.  The Internet can provide good information on reliable websites but it can also become an obsession and can provide scary out-dated info too- so please try to stay away and just listen to your doctors for now.  Wishing you all the best .  Please keep us posted.

 

Blessings.

 

 

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