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Frustration

kfit3
Posts: 1
Joined: Dec 2019

Hello. So a little about my journey; I'm a 24 year old female who has been healthy, active person up until 3-4 months ago. I started to have drenching night sweats where I would wake up soaked in sweat but not be hot; I didn't think much about them and tossed it to the side. They started to happen more frequently (a couple times a week) and still didn't think much. About a month after the increased night sweats, I noticed enlarged inguinal lymph nodes. I then went to the doctor and they discovered enlarged lymph nodes in the inguinal area, occipital, axillary and submandibular- that was in September. Mid-September, I noticed the fatigue hitting hard. I sleep 8-10 hours a night and still need a mid day nap or else I'm miserable and so, so tired and get headaches.  Overall my energy has decreased subtantially and I just always feel tired. I was a full time college student and started to fall so behind due to the fatigue, not being able to focus and missing class to sleep. I ended up having to take a break from school to focus on what's going on. I also have developed severe sensitivity to alcohol which I never had before- a couple drinks and the following day my lymph nodes are sore and I can't keep anything down.  I also knew something wasn't right when no amount of coffee/caffiene would help wake me up as I'm a coffee lover. 

My primary doctor was concerned about lymphoma with my symptoms. So the doctor's decided to do a biopsy in October- it came back as just a reactive lymph node. Still frustrated with this, I sought out a second opinon with a specialist. They did a whole list of tests to rule out any infectious diseases or auto immune disease. Those all came back negative. They also did a PET scan which showed the areas with the enlarged lymph nodes to react to the radioactive marker.  So they wanted to do another biopsy. They took 2 lymph nodes out. Results were just more reactive lymph nodes. 

I'm frustrated because I would like answers and was hoping the 2nd biopsy would show something as it's been 3 months and still no answers as to what's going on and why I feel the way I do. 

Has anyone else gone through this? Have any advice/insight? Anything will help.

Thank you. 

po18guy
Posts: 1097
Joined: Nov 2011

Cancer produces symptoms, but symptoms do not necessarily produce cancer. My advice is not to look for a cancer which you do not have. After that much testing that many biopsies and zero cancer being found, it is almost 100% certain not to be a malignancy. There are 68,069 known diseases and many times that which are unknown. There are millions of viruses. Millions. Only about 3,300 of them are identified. 2019 in my experience, has been a year filled with unknown viruses. I just finsihed my 6th or 7th for the year. Only the last one was identified as the common rhinovirus. 

The reactive nodes mean that your immune system is reacting to something, but what? Have you have a blood panel run for allergies? I just did and received some surprisong results. If no malignancy is found, immune response is immune response. With so many thousands of conditons to check, no wonder it takes some extended diagnostics to arrive at an answer. But, also be aware that many diseases and conditions are never identified, and so only the symptoms can be addressed. Wondering if you have been to an endocrinologist?

ShadyGuy
Posts: 551
Joined: Jan 2017

Just wondering - were any of the doctors whom you saw oncologists or hematologists? are the nodes painful? Were the nodes examined in house or were they sent to a special lab? usually results from an outside lab take afew days, often up to 2 weeks.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3517
Joined: May 2012

kfit,

Very few things produce night sweats:  blood cancers, and menopause.  That's about it.  Before diagnosis, my wife had me sleeping on a beach blanket and a body towel.  They were soppy each morning.  We did not know what that meant, especially since I've always been a heavy sweater during the day (completely unrelated to night sweats, we now know).  The night sweats, severe fatigue, and enlarged nodes are DAMN suspicious, IM (not usually) HO.   It is the textbook presentation of what are termed "B-Symptoms."

 Obviously, you are waay too young for age-related menopause.  If no blood cancer can be identified and this continues, see a Gyn had have your ovaries tested.   Even men with prostate cancer, if they have to go on hormonal therapy (known as "Chemical Castration") at times report night sweats, since they are in effect experiencing a drug-induced 'menopause.'

Your severe fatigue is classic, and almost nothing causes nodular pain after alcohol consumpion.  One of the few documented causes is as a RARE reaction to Hodgkin's type Lymphoma.  This is not a common thing, but remarkable when it occures.    I have this pain today, ten years after total remission from HL, after a few beers.

Like Shady, I would suggest seeing a bona fide (Board Certified) Hematologist.  Board Certification in Hematology is a seperate, different certification than 'Medical Onlology,' although they overlap a lot, and many doctors hold BOTH.   (I personally have never read the credentials of a hematologist who was not also a Medical Oncologist, but most medical oncologists are not Board Certified in Hematology, although they often treat blood cancers.)

Assumedly your biopsies were excise (surgically cut out, NOT pulled via a needle).   I would also definitely have your biopsy sample sent to a prominent institution for second opinion: some place like Johns Hopkins, MD Anderson, Sloan Kettering, Stanford, Emory University, Mayo Clinic, etc.   You may have to pay out-of-pocket, but I would do it.  Some lymphomas are extremely rare and seldom seen in pathology labs.   It is either a hematological disorder or immuniological issue it seems.   And be aware: No member here is a doctor, and none of us can give medical 'advice' -- just our own insights, and what we would do, based upon reading and personal experience.

 

My read of your questions,

max

annie4145
Posts: 182
Joined: Jul 2018

I encourage you to stay on top of this until you feel better.  You were a normal college student and now are having these symptoms.  something must be causing it.  It might not be cancer. it could be something else.  But don't stop until you find it.  Alot of people with cancer have been steered wrong by doctors, especially if the doctor was not a specialist.  My old boss lost 10 months trying to get diagnosed, and when he was finally diagnosed it was at a high stage of colorectal cancer.   so chase it down if it all possible, and go see a well qualified specialist or go to a big teaching hospital if needed.  Good luck!  PS Make sure that you keep your insurance up if you have it.  

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