Discussions By Condition: Lymphoma

Sarcoidosis vs Non-hodgkins lymphoma

Posted In: Lymphoma 10 Replies
  • Posted By: nikkiwxspoon
  • December 16, 2006
  • 01:21 AM

I would like to know if there was a chance my husband was misdiagnosed with sarcoidosis while serving in the military. He served in the US Army from 1981 to 1996. He went through a lengthy treatment with varying doses of prednisone which supposedly put the disease into remission but a recurrence of the disease came back in 1993. Again he was treated with doses of prednisone and supposedly no diagnosis of the disease since departing the military in 1996.He served in the Gulf War. In 2002 at the age of 39 he was diagnosed with Non-Hodgkins Lymphoma. He stays in remission about 1 year at a time before recurrence of the disease. I would like to know how can he know if he was misdiagnosed in the military. Are there any known cases of this happening?

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  • Actually, I had the opposite happen. I was first diagnosed with Sarcoidosis in 1996 after many coughing spells and a hot chest cat scan. I had very few problems with it, however got really sick in October 2005 and after much testing and a positive pet scan, was diagnosed with Lymphoma on 12/27/05. I later, in January, found out from a biopsy of my spleen, that I have a very rare form of Sarcoidosis. After speaking at length to the doctors at University Hospitals in Cleveland Ohio and enduring many more procedures, that Sarcoid is often misdiagnosed as Lymphoma, therefore a bone marrow biopsy is absolutely necessary. Mine came back negative, which does not always mean that cancer is not there, but is a good indication that something else might be going on. I've had about 5 doctors who viewed a chest xray of mine casually tell me I should see an oncologist right away, so Sarcoid does look like cancer to many people. Please have your husband get a second opinion.
    LindaRoyer 1 Replies
    • December 30, 2006
    • 04:50 AM
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  • I would like to know if there was a chance my husband was misdiagnosed with sarcoidosis while serving in the military. He served in the US Army from 1981 to 1996. He went through a lengthy treatment with varying doses of prednisone which supposedly put the disease into remission but a recurrence of the disease came back in 1993. Again he was treated with doses of prednisone and supposedly no diagnosis of the disease since departing the military in 1996.He served in the Gulf War. In 2002 at the age of 39 he was diagnosed with Non-Hodgkins Lymphoma. He stays in remission about 1 year at a time before recurrence of the disease. I would like to know how can he know if he was misdiagnosed in the military. Are there any known cases of this happening?HiI was diagnosed with sarcoidosis in 1986, most likely as a result of chemical exposure. Like your husband, I was treated in kind. In 1998 I was diagnosedwith NHL and treated successfully at that time with a program that targeted the lypmh glands, as that is where the diesase was found by biopsy. Now in 2007 I have been told I've relapsed and it is systemic, in my bone marrow and some organs. I may end up needing a BM transplant.My point here is that I'd love to blame the orginal Dr in 1986 for misdiagnosis, but realistically a biopsy was performed and the disease wasn't found. There are many conditions that cause swelling of the nodes in the lungs that often can't be identifed or even catagorized. That is what the term sarcoidosis refers to, a disease of unkown etiology. If the disease was present at that time prednisone could not have made is disappear or go into remission. Was it an indicator that something was going to happen in the future? Probably. Is it our nature as humans to quickly forget those close calls, to fail to stay alert and aware of the potential for future problems? Certainly.As far as my relapse goes, was the first treatment wrong? Were the Drs not agressive enough? Were they irresponsible or negligent? I would have to say no. Maybe not as smart about it as they are almost 10 years later? Sure.It is an evolving science.Cancer took my Mom, my son had leukemia as a child, he's OK at this time, and I have NHL. I've lived around cancer all my life. The one thing that can provide you with solace and hope is to acknowledge that the ability to treat your husband today, to prolong his life, even though the disease may come back still again, wasn't possible 20 years ago. Many, many people like my Mom died helping the Drs learn how.Suing the Army is not the answer. Understanding the disease as best you can and accpeting that we're all human, all learning, and all trying to stay alive is. I wish your family well. God Bless You. Gerry
    Anonymous 42789 Replies
    • January 26, 2007
    • 05:31 AM
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  • Do a search, Sarcoid has now been linked to Lyme disease and its co infections. First, for 20 yrs it was "all in my head, syndrome" then I was told I had fibro, then had the lung sarcoid, biopsied, now after 25 yrs, Its been Lyme all along. Steriods are not goot for Lyme patients, I refused treatment for the sarciod, becuse I wasn't having problems with breathing. NOw that I know steriods can make Lyme worse and open the door to other problems, I am glad I refused. My hubby has it and we think its from mold, cause we have animals and work with alot of hay...They hay molds and gets dusty. Not to scare anyone, but the gov't does a lot of covering up....What was in all those vaccines your hubby had to go serve his country?? Gulf war syndrome and fibro have been linked to aspertaime too. Do some searches on this too....Hope you can find help and the answers soon.
    Anonymous 42789 Replies
    • February 3, 2007
    • 01:54 PM
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  • Well My Story Has Nothing To Do With The Military, But I Thought It Wouldnt Hurt To Share It. At The Age Of 12 My Husband Was Diagnosed With Nhl, After Losing Tons Of Weight And Every Lymph Node Was Huge, High Fever, The Whole Bit. Back In The 70's They Didnt Know Any Better, They Opened Him Up, Took His Spleen, And A Bone Marrow Sample. They Did Chemo And Radiation, Back Then They Didnt Know As Much As They Do Now, So He Has Burn Scars On His Hands And Arms From The Chemo Being So Strong, He Went Through This Til He Was Almost 14, And Was In Remission, But Because Most Of The Radiation Was Sent To His Groin Area He Was Left Sterile. Then Shortly After That He Was Sent Back Up To Primary Childrens To The Psych Ward Because He Was Anorexic, After Being Sick All That Time With Chemo, He Had No Appetite, He Stayed There For 6 Months. And After Gaining A Meer 4 Lbs He Was Let To Go Home. After 41 Years He Is Still In Remission. Which Is Good For Us, But Bad For Us Having Babies, I Had A Son When We Got Married And We Went Through Artifical Insemination With Our Daughter, She Doesnt Know, Someday She Will. There Is Hope, Medical Intervention Has Come A Long Way, I Lost My Grandma- Paternal And My Uncle From Cancer,- Lung Cancer- Grandma, Organ Infested.. So I Have Really High Chances Of Getting It. I Hope Not. I Dont Know If This Helps Or Hurts All Of Your Thought And Feelings. I Hope It Helps... Favrex
    favrex 9 Replies
    • February 11, 2007
    • 09:09 PM
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  • Where do I begin? I was also in the military 89-92. I was diagnosed with Hodgkins in 2003 when my son was 8 weeks old. 6 months of chemo, and in remission. In april 2005 I was diagnosed with Sarcoidosis. 2 weeks of steroids and gone. If you do a search, there is a strong link between people diagnosed with sarcoid, who later on get cancer, HOWEVER, there are only 2 documented cases of someone having Hodgkins and then getting Sarcoid. I am a nurse who is treated in a large teaching hospital in Cleveland, and I understand your frustration. I have had numerous Positive PET/CT scans in the last 6 months, but until we do a biopsy we don't know if the sarcoid or the Hodgkins has returned, or if it in fact is nothing. Yesterday I was diagnosed with Bells Palsey. (the right side of my face doesn't work, it is partially paralyzed) usually this is see with viral infections, but mine may be related to the sarcoid. so today i'm searching the internet, and praying for God to give me the strength to deal with this newest trial. Best of luck and i'll pray for your husband.
    Anonymous 42789 Replies Flag this Response
  • Hi All,I have just read this thread with some interest and can empathise with all, and i do agree that it is difficult proportion blame on mis-diagnosis and the effects of having served in the Gulf War. I served in the British Army from 1984-2006 and served in the Gulf War. I served with a M109(an American tracked tank/artillery gun) regiment and was exposed to the reported fumes and dusts from the burning oil wells and the extensive air polution that was there at the time. I was also vacinated with the extensive cocktail of drugs that were to give some protection against any chemical warfare agents that may be used upon us. During and particularily immediately after the hostilities i was involved with the clearence of damaged and bombed Iraqi vehicles and tanks that had been hit with Depleted Uraium tank shells. I am now 42 years old and 6 months ago i had a swollen leg, this progressed to a groin strain/ swelling. My Doctor sent me to A&E with a suspected DVT(Deep Vein Thrombosis) this was ruled out and i was refered back to my Doctor.I was then refered to a Consultant Surgeon, I did have to wait until 2 weeks ago to see him(The Health Service in the UK is not renowned for their speed), I saw him at 10.30am and had 2 CT scans completed that afternoon bith of my intestinal systen and blood system. The results of these where available in 3 days and the next day i had lymph nodes removed from my groin to test for a lymphoma. 4 days later i recived the results and within 12 hrs was admitted and had a bome marrow biopsy taken. This confirmed that i have advanced non-Hodgkins Lymphoma. Tonight, i sit, 3 days later haved just got home from my first session of Chemotherapy, only 7 sessions over 6 months to go. I have spent time reflected on other problems that have arose which could be attributed to mis-diagnosis and the Gulf War. Particularly the fact that i have 3 children.One at 8 yrs old, one at 3yrs old and 1 seven months old. My youngest two only just survived childbirth and were diagnosed with Infant Growth Deficit, and the questions were raised then about my Gulf War exposures.The British Army, like the American Army are very quick to diminish such links, and this is very frustrating, and i also empathise and understand the frustrations over mis diagnosis But i agree with the previous threads, that times, and research has advanced greatly over the past years and that diagnosis now is becoming more definative.My Consultant has advised me that i have a 88% chance of my cancer returning in 1-5 years, but she has also said that cancer research is progressing at amazing speed.I have offered my case notes and information to various consutants for further study in ahope that it may assist someone in the future, and i would like to end quoting from another of your replyie"Understanding the disease as best you can and accpeting that we're all human, all learning, and all trying to stay alive is. I wish your family well. God Bless You. "MarkNothern Ireland
    Anonymous 42789 Replies Flag this Response
  • Mark,Your story is gut wrenching! Above all you must keep a strong attitude. If you google "lucidboomer" you will find me. Contact me via twitter or through any other link you find. I'd like to discuss your situation more.Nick
    Anonymous 42789 Replies Flag this Response
  • Actually, I had the opposite happen. I was first diagnosed with Sarcoidosis in 1996 after many coughing spells and a hot chest cat scan. I had very few problems with it, however got really sick in October 2005 and after much testing and a positive pet scan, was diagnosed with Lymphoma on 12/27/05. I later, in January, found out from a biopsy of my spleen, that I have a very rare form of Sarcoidosis. After speaking at length to the doctors at University Hospitals in Cleveland Ohio and enduring many more procedures, that Sarcoid is often misdiagnosed as Lymphoma, therefore a bone marrow biopsy is absolutely necessary. Mine came back negative, which does not always mean that cancer is not there, but is a good indication that something else might be going on. I've had about 5 doctors who viewed a chest xray of mine casually tell me I should see an oncologist right away, so Sarcoid does look like cancer to many people. Please have your husband get a second opinion.Hello- was just wondering if you could share the sarcoid docs name at the cleveland clinic- looking for a good one. did you have other sarc presentations?
    Anonymous 42789 Replies
    • February 20, 2010
    • 03:33 AM
    • 0
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  • Hello all. My name is Nicky, and I was diagnosed with non hodgkins lymphoma nearly two and a half years ago. I had a swollen lymph node (groin area). I had this for a about a year in total before finally getting to see a specialist in November 2008. I had the lymph node completely removed, and was first told that they thought it was hodgkins lymphoma. It was a few days later when they actually told me it was non hodgkins. There followed the various tests such as a scan and bone marrow biopsy. It wasn't present in my bone marrow which was a huge relief. I am feeling absolutely fine now - but those first few weeks of being diagnosed where particularly hard. I suffered panic attacks whilst waiting for the full diagnosis. At the time, I actually didn't realise that these were panic attacks I was having and thought that they must be symptoms. I think that being told I had hodgkins and then being told I had non hodgkins -(I had researched the internet and the prognosis for hodgkins seemed to be much better than for non hodgkins) I had a bit of a life crisis! I was very lucky as I had found it in the early stage (stage 1). I had radiotherapy in Dec and January - and I have now been in remission for nearly 2 1/2 years. The reason I am replying to this thread is because my sister has just been possibly diagnosed with sarcoidosis. She has had numerous things wrong with her over the last year. A rash on her legs, dry eyes and mouth, more recently she was admitted to hospital with shortness of breath - she actually said that she felt that she was going to have a heart attack! All of these things are symptoms of sarcoidosis. It was her G.P that finally made the connection and he has subsequently sent her for full blood counts and chest x ray. I have had - for as long as I can remember a rash on the front of my legs - again sarcoidosis refers to a rash - normally on the front of the legs... This rash I have is more or less there all of the time - sometimes it is worse than others. I have never had this diagnosed. It is not excema or scoriassis - my G.P just keeps telling me it is down to stress. I am now very much wondering whether a.) I have sarcoidosis and whether this has triggered off NHL or whether b.) I have been wrongly diagnosed??In one of my scans - there were liver lesions - or what looked like liver lesions also. We seem to have a bit of a history in our family to do with ilnesses related to our immune systems. My mum and another sister both suffer with alopecia - my sister only in patches, but my poor mum has lost all of her hair. My mum also suffers with fibromyalgia. Again to do with your immune system. My nan suffers from polymyalgia an another of my sisters is being tested for lupus. My dad also had TB when he was young. There seems to be to be some sort of connection with my sister being diagnosed with sarcoidosis and myself with NHL - especially after coming across this website. I will mention all of this to my specialist when I next see him next month. It would be a relief in some ways if I was to find out that I had sarcoidosis - as this would explain the rashes on my legs which I have suffered with for years and still have to this day. I do wonder though if whether this is the case - it it had been diagnosed earlier - would I still have had NHL. Who knows and I belive in the comments about understanding your disease. There is still a lot to learn. If anyone else has similar stories or advice I would be appreciative to hear them. Many thanks. Nicky x
    NickyH 2 Replies Flag this Response
  • Okay this is very interesting to me. I did a search about because about 3 years ago my boyfriend was diagnosed with Lymphoma and I am not sure if it is Non Hodkins or what. See he is in Prison ( i know total opposite of serving our country but please dont judge, thanks) and when you get processed through the system they do a lung x-ray and they saw something on his lungs and apparently he had cancer. they did 40 rounds of aggressive chemo and now for 2 years he has been in remission but they told him he has sarcoidosis about when he finished the chemo. I was just suspicious because it is prison and I have always been skeptical of this diagnosis just was trying to look further into it. He was 28 at the time of his Lymphoma diagnosis and I found this thread. I sometimes think he never really had the cancer possibly and sometimes I worry that what they keep seeing in the CT scans or whatever they are taking periodically is not sarcoidosis. I am trying to get him to go to a doctor when he comes home in October but he says he is never going back to the doctors again. I think these diagnosis are too intertwined and very suspicious but I am no Doctor ...lol Just a thought. Good Luck to everyone searching for answers!
    JustJessie 1 Replies Flag this Response
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