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Symptoms

Dkeys
Posts: 1
Joined: Jan 2016

Hello. I'm on here not because i was diagnosed with this form of cancer or any cancer, but because for the past almost two years I have been having symptoms that point in that direction. Around March of 2014 is when I noticed the symptoms. I was getting sharp pains in my stomach daily, pain in my groin and pelvic area, was constantly tired, and was getting leg pain. These symptoms among others would come and go daily. I went to my doctor to find out what it could be and have gone numerous times since then even though looking back should have found someone else. He did blood tests but said all that came back was inflammation and a low wbc count. They xrayed my leg for the leg pain but nothing came back. They did a pelvic CT scan that May but found nothing. He sent me to a colon specialist who then sent me to a gastro specialist. The pain in my groin and legs continued to hurt and in August of that year there was swelling in my left leg one night and the next day it started turning a bluish purple color and got slighty larger each day i had it. I was worried it might be a blood clot because my cousin passed away years ago from that. It was there for ten days and when I voiced my concerns to my doctor he told me you probably have an iron deficency, yet did no tests to figure out if that was true.  I got tired of going and being told that things were normal and being prescribed anti inflammatory medicine for my stomach. I saw the gastro specialist in December 2014 and was scheduled for an endoscopy to be done the next month. I had that done and in the end they took four biopsies from that. I called for the results and they said everything came back fine. Skip ahead to about June 2015 and I called the gastrospecialist office after I tried to find my health records online. They said, oh you had erosive gastritis and a hiatial hernia. She told me that and then said that was it and to have a good day. The chest pain started that summer along with already having leg and stomach pain. It would be sharp and would happen randomly. I went to medexpress because no way was i seeing my doctor again. She did an EKG and told me that whatever it was it wasn't a heart issue. When I mentioned my leg pain, she said that it was probably connected to the pain in the chest. I didn't want to keep going and explaining what was wrong just to be looked at like I was making things up. Which brings me to now. Before christmas I started getting the pains in my neck, collarbone,underarms, and also suffer itchy skin. I also get short of breath walking up stairs, but only when i walk up stairs. The leg, chest, and stomach pain are still going on along with daily headaches, and my stomach will feel swollen almost right after I eat. In the weeks since my appetite has decreased less and less. I weighed in at 138 at christmas and yesterday January 14th my weight was 130. The reason that I thought it might be a form of lymphoma is besides all the symptoms that I have is that I noticed this week that the left side of my neck below my jaw looks swollen. I'm looking for a new doctor, but is there any certain specialist I should think about seeing. After my experience with my other doctor I'm wary because I don't want to be seen and dismissed, but I do think something is wrong. 

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

I'm sorry for your lack of help in finding the source to the problems you discribed.  I will be honest, I'm not a doctor rather a lymphoma patient.  Some or your symptoms sound indicative of lymphoma while others do not.  

By all means be your own advocate and demand answers, never be dismissed because this is your life and your health depends on it.  Doctors make mistakes.  If you look at one of the leading causes of death in America you may discover medical error.  Doctors work for you.  There are wonderful doctors out there who will not let any stone go unturned until they find a reason for your ailments.

I would seek out a oncologist, hematologist.

Best of luck to you.

lindary's picture
lindary
Posts: 711
Joined: Mar 2015

I agree with 007, find an oncologist/hematologist. With all of the probems you have been having I would have been screaming at the Dr. In my opinion, there are just too many red flags coming up.

paella's picture
paella
Posts: 81
Joined: Jun 2012

As mentioned, I'd also suggest looking for a new doctor in the form of an oncologist…specifically a hematological Oncologist.    

Where are you?  U.S.?  Other countries?  What insurance do you have?   

I would find the best Lymphoma treatment hospitals nationwide (try Lymphomation.org and click on Doctors right at the top).  Look for those that have “PI” or “ES” or “SPORE”.  (There are only 3 U.S Hospitals that have earned a SPORE designation.)   

Then I would get on the websites of the most geographically-desirable ones, get their phone number for “new patients” or select “new patients” from the phone menu then “scheduling”.  Try simply saying:  “I’d like to get an appointment with Dr. XYZ, one of your hematological oncologists, as soon as possible, please”.  See what happens and then just take it from there. You’ll probably be transferred a bit, but some of these places (even the most famous of famous) may will take you without a referral if your insurance makes them smile.  

Be prepared to outline (at some point while on the phone) your swollen cervical (neck) area, your itchiness, your unexplained weight loss, perhaps your drenching night-sweats.  

You’ve certainly been diligent in seeking answers…you deserve to have the medical community actually HELP you and that usually means a good diagnostician.  They’re a lot harder to find than most people think.  And as 007 said, you must be your own advocate.

Good luck and keep us in the loop.

 

Paella

po18guy's picture
po18guy
Posts: 1223
Joined: Nov 2011

This does not sound like lymphoma to me. If it was, with the numerous symptoms that you are reporting, you would likely have easily detectable tumors all through your body. Those would be detectable by physical exam, X-ray, MRI, ultrasound or CT scan. If it began producing symptoms two years ago, you would almost certainly have much different, and much more serious symptoms. Unless it was a very slow-growing type, you would not be here after two years of untreated symptomatic lymphoma. Many of the primary lymphoma symptoms are absent. The erosive gastritis and hernia can account for the lower body pain, and the stress and frustration of all this can produce the upper body pains and weight loss. Really.

Regarding the bloodwork, I do not know if doctor checked for LDH, but if it was substantially elevated, that might provide a direction to go in. Elevated LDH is consistent with tissue breakdown, and that is observed in many conditions, lymphoma being only one of them, but inflammation being another. The inflammation that doctor noted can cause general discomfort, joint pain and even sharp pains or other health conditions if the inflamed tissue is impinging upon nerves or organs. That, and the low WBC are consistent with an infection or possibly an autiommune condition. Keep in mind that there are 80+ autoimmune diseases that may produce your symptoms as well as those of some cancers. But, autoimmune conditions are not cancer. Rather, they are a malfunction of your immune system.

Can lymphoma or some other blood cancer be absolutely ruled out? Not at this point, but I do not see them as being likely. Do seek another doctor, as a second opinion, especially in the case of an unidentified condition, is highly recommended. I hope that the cause of all this is soon found.  

paella's picture
paella
Posts: 81
Joined: Jun 2012

This does not sound like lymphoma to me…if it began producing symptoms two years ago, you would almost certainly have much different, and much more serious symptoms…Unless it was a very slow-growing type, you would not be here after two years of untreated symptomatic lymphoma. 

I have to differ with you, po18guy. 

I’m told that after 3 or maybe even more years of symptoms, tumors are rarely detectable by x-ray much less by a physical exam.  I’d be curious as to what percent of lymphomas are diagnosed in the indolent stage? 

7+ years ago, in seemingly the peak of health and activity level with nary even a cold for years (at age 59) I began having a positional backache.  It was only when supine or ¾’s prone, always located between spine and kidney area and only on one side.  It was mild and not constant and, since I’m rather prone to lower back pain I just assumed that’s what it was.   

After it became 2-sided and nightly (only when reclining…no problem when standing, walking, sitting or running) I started seeing MD’s.  One suggested tennis elbow (my elbow was bothering me, by golly).  Another suggested a back x-ray.  (I should note that I requested that this doc be sure she thought I should have a CT scan since it would be a straight out-of-pocket expense for me.)  So, post-x-ray: the diagnosis was arthritis which I was eventually told 2 months later.  I figured that if SHE thought an x-ray was sufficient and then didn’t even bother to let me know until I CALLED for a PT referral, then no worries.   

Less than a year later I was diagnosed with stage 4 nhl dlbcl plus stage 3 folicular.  Admittedly, I didn’t have much in the way of additional symptoms until the last few months before diagnosis.  Finally, a 3 weeks before diagnosis I went to a community ER, had a kidney ultrasound and a CT and was encouraged to see “a multi-disciplinary team of oncologists” due to my “extensive retroperitoneal lymphadenopathy”.  

That was 4 years and 3 months ago.

 

 

 

 

 

 

 

leighaa93's picture
leighaa93
Posts: 30
Joined: Jan 2016

So tomorrow i have a sonogram and i. Just learning to use the discussion board. Im not quite aure if i am doing this right. 

 

Ihave had a swollen lymphnode in my neck for a while and one in the crease of my tthigh and abdomen. 

 

Anyways. Point here is i am breast feeding and i had notice a lump under my armpit when i was pregnant . my doctor had told me i needed to have it biopsied thwn in the middle of pregnancy i switched back to my old doctor. A few weeks ago i noticed it was still there because i had an unusual pain in my left breast . i saw a doctor and they put me on antibiotics for 10 days.  It did not go away. Now three weeks later i have one that just appeared under my right armpit. 

 

My doctor told me that breast feeding could be masking breast cancer. I guess im ro optimistic to think i have cancer. I am only 22 years old.  

 

Tthe reason for mentioning the one in my geoin area and neck is because i had forgot all about them until i just realized i had the ones inmy armpits. The one in my groin is very hard and fixed. The ones in my armpits are kind of moveable and so ia the one in my neck. 

Im not sick i dont have any infections or anything. 

 

So with that being said ... 

Can a sonogram actually pick up breast cancer or lymphoma? 

Should i be coconcerned or what could cause it besides Cancer. 

Is this normal has anyone else had this ?

Max Former Hodg...
Posts: 3699
Joined: May 2012

Dkeys,

Along with everyone else, let me welcome you here. I hope the Board is useful to you, but that you discover soon that you have no further use for it (due to not having lymohoma).

Geeze, you have a veritable Bohemian Rapsody of symptoms.  But they are all so disparate -- apparantly unrelated.  As PoGuy mentioned, for all of these things to be of lymphoma in origin you would have to have serious, advanced lympohoma indeed. Lymphoma that would have been caught before now.

Joined with your negative CT of the pelvic region and the negative scoping of your GI trac, with negative biopsies, my strong sense is that what you are dealing with is something other than lymphoma. The ulceraton in your stomach and the hiatial hernia probably account for several of your symptoms.  I too have a severe hiatial hernia, decades old. It is so pronounced that people can hear it at times sliding in and out of the diaphram.  This caused me severe chest pain in the past, so bad that an ER thought that I had angina.  But the pain was proven to be gastronomic in origin.  My surgeon has recommended against surgery, and it is well controlled with Prilosec or similiar drugs.  I read a study in the 1980s that concluded that close to 50% of all ER chest pain arrivals, in patients who did not already have established coronary disease, was later determined to be gastro in etiology (causation).

My layman's read of your medical facts at the present. Obviously you need to continue demanding answers and seeking them. The swelling of the leg and discoloration in particular is peculiar,

max

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