What Is Next.

I am currently going through a very tough time. Today being worst than others. I am a 38 year old male. About 9 months ago I spoke with my doctor regarding my fatigue and night sweats as well as various other problems. After a number of tests it was determined that I had multiple lymph nodes that were large and were not going back down to normal sized.

In November last year I had a biopsy of three of the nodes in my neck. All three were clear, but the symptoms persisted and other areas were becoming inflammed and my pain has been growing. Originally in my chest and neck the pain has moved into my armpits, collar bone area and chin as well as chest and neck.

 I have had a PET scan in February which showed no masses. All of that is great, except my symptoms persist. After all of this my doctor and oncologist wanted to wait 3 months. To help with some of the symptoms they perscribed medication for fibromyalga. That has helped with the general pain and fatigue, but not the pain at they lymph nodes.

 Not being someone to wait around I went to another doctor to see if there was anything else we could look at. Any other ideas that would cause my pain, fatigue, sweats, etc. I opened my records and things just seem to take SO long. I have kept up with it, but I'm getting exhausted emotionally. I finally got an answer from the second opinion doctor. She had discussed it with collegues and they wanted to review the biposy slides. This told me that the general consensus seems to be that I most likely have lymphoma but it is unsubstantiated. The initial review of the slides was just the lymphs are swollen and they are now making new slides with the left over tissue.

 It seem in the last month the pain is moving up on the scale again. I'm feeling like I'm at the end of my wits. Not having a diagnosis with this pain is wearing on me, but I can't stop pushing. My oncologist did say that he has seen cancer cause the body to react that isn't seen in a PET scan and shows up later. I guess I just need to hear if it has been this difficult to get a diagnosis for anyone else. I also need ideas to help with the pain. I'm not able to stay ahead of it even trying to get more sleep. I also just want any other ideas for what else I can do.

 I guess I just feel like if I don't find something to do I'll become overwelmed with everything and break down.

David,

Keep pushing for a clear diagnosis, ruling either in or out. My partner of 24 years was finally diagnosed with Stage IV, non-operable Stomach Cancer. It took us 3 different doctors to finally give us an answer to a 50 pound weight loss that was unexplained. He had NO symptoms and felt great. The third doctor finally said we need an endoscopy, post haste. It even took two of those, as the first one was performed with normal sized cups. The second one, he used the "Dolly Parton" model which could take a bigger chunk of Linitis Plastica lined stomach tissue with which to get a definite diagnosis.

My only point is, that you alone, know how your body is feeling. As long as you haven't crossed the line into hypochondria (fairly easy line to blur, lol), your body will always tell you when something isn't right. Listen to it.

Hang in there and get your diagnosis. Take care of yourself, you don't need to have a breakdown. There's always time for that, later.

Best Wishes,  Scott 

On 4/15/2008 DavidP1227 wrote:

I am currently going through a very tough time. Today being worst than others. I am a 38 year old male. About 9 months ago I spoke with my doctor regarding my fatigue and night sweats as well as various other problems. After a number of tests it was determined that I had multiple lymph nodes that were large and were not going back down to normal sized.

In November last year I had a biopsy of three of the nodes in my neck. All three were clear, but the symptoms persisted and other areas were becoming inflammed and my pain has been growing. Originally in my chest and neck the pain has moved into my armpits, collar bone area and chin as well as chest and neck.

 I have had a PET scan in February which showed no masses. All of that is great, except my symptoms persist. After all of this my doctor and oncologist wanted to wait 3 months. To help with some of the symptoms they perscribed medication for fibromyalga. That has helped with the general pain and fatigue, but not the pain at they lymph nodes.

 Not being someone to wait around I went to another doctor to see if there was anything else we could look at. Any other ideas that would cause my pain, fatigue, sweats, etc. I opened my records and things just seem to take SO long. I have kept up with it, but I'm getting exhausted emotionally. I finally got an answer from the second opinion doctor. She had discussed it with collegues and they wanted to review the biposy slides. This told me that the general consensus seems to be that I most likely have lymphoma but it is unsubstantiated. The initial review of the slides was just the lymphs are swollen and they are now making new slides with the left over tissue.

 It seem in the last month the pain is moving up on the scale again. I'm feeling like I'm at the end of my wits. Not having a diagnosis with this pain is wearing on me, but I can't stop pushing. My oncologist did say that he has seen cancer cause the body to react that isn't seen in a PET scan and shows up later. I guess I just need to hear if it has been this difficult to get a diagnosis for anyone else. I also need ideas to help with the pain. I'm not able to stay ahead of it even trying to get more sleep. I also just want any other ideas for what else I can do.

 I guess I just feel like if I don't find something to do I'll become overwelmed with everything and break down.

I too had many problems and JUST KNEW something was wrong.Well about 16 doctors and three ER visits later I found out I had stage 4 colon cancer and was given 3-6 months! The bright side of this(LOL) IS I'm still here almost 4 years later and doing ok! My point being PAY ATTENTION TO YOUR GUT FEELINGS!! AND KEEP GOING TO DIFFERENT DRS UNTIL YOU FIND OUT WHATS WRONG! Don't let them make you feel "crazy"! If I had pushed more,I probable wouldn't be so far down this hard road.TAKE CARE

Are you seeing physicians at a small local hospital?  I would suggest seeing an oncologist at a major teaching hospital.  The docs at teaching hospitals look "outside the box" and have resources available many local hospitals do not.  You have suffered enough and need some answers.  Good luck to you.

On 4/15/2008 daybyday wrote:

Are you seeing physicians at a small local hospital?  I would suggest seeing an oncologist at a major teaching hospital.  The docs at teaching hospitals look "outside the box" and have resources available many local hospitals do not.  You have suffered enough and need some answers.  Good luck to you.

 

I do live in a good sized city. My second opinion doctor is with The Ohio State University and connect with the James Cancer center. She is working with researchers and the labs of OSU. That is where I have found that the problem is that my symptoms are so right on for Lymphoma, but the tests are not confirming it. I think we are going to do another round of similar tests again starting with X-rays.

 Thank you for the suggestions and luck!