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What to expect

OKIM65
Posts: 1
Joined: Oct 2004

My journey started with what I thought was a heart attack. After three days in the hospital and OK on my 39 yr old heart...I was adivsed that numerous "nodules" showed up on the CT scan. These chest pains, nodules around my heart/lungs along with horrible night sweats, have my doctor wanting to test for HD. He is consulting with radiological surgeon to see if biopsy is an option. I am scared to death not knowing what to expect. Will they have to cut my chest open? Can they do blood tests? I am seeing an oncologist as well due to extremely elevated WBC and Platelets. Does anyone have info or questions that I should be asking?

KathySue1955
Posts: 6
Joined: Feb 2004

My son was diagnosed with Hodgkin's in May 2003. Most of his disease was in his chest and lungs, with spleen and bone involvement. He had a needle biopsy of a chest lymph node, although to be honest the needle was big, about the size of the wire in a coat hanger. He was awake the whole time, but felt no pain. They kept him at the hospital for several hours just to make sure he did not have a pneumothorax (air in the chest), which could cause a collapsed lung. He took it easy that night, and was good as new the next day. It is my understanding that the biopsy is the only way to tell for sure what kind of lymphoma a person has. For instance, for Hodgkin's they are looking for what are called Reed-Sternberg cells. They can also tell what subtype of Hodgkin's a person has. (My son's was nodular sclerosing, the most common subtype.)

It is good that you are seeing an oncologist, who will probably also be a hematologist, as even if you don't have lymphoma, you will want to know the reason for your high wbc's and platelets. My son had high wbc's, but normal platelets. He also had low hemoglobin.

I know you are scared, but remember that if it is Hodgkin's, it is very treatable and usually curable. Most people are cured just with chemo and possibly radiation. My son's was about as bad as it gets, but he is still here 16 months later, almost in remission, and getting ready for a stem cell transplant. Other lymphomas are also very treatable and sometimes curable.

Best of luck to you. I hope this is just some weird infection, but if you do have Hodgkin's and have any questions I might answer, please feel free to e-mail me at medmom1@aol.com.

lhodnet
Posts: 62
Joined: May 2004

I have had many health professionals tell me to be wary of the needle biopsy because the needle, if not large enough, can actually damage the cells thereby rendering them useless. Same goes for blood transfusions - need large needle so that the red blood cells don't become damaged.

I was diagnosed with HD stage IIBX on May 5, 2004. They did a biopsy that day and cut my chest open - I have about a 2 inch incision where they opened me and took a sample. My surgeon also kept me open while the pathologist looked at the sample to make sure that he got a good one so that they didn't have to open me again.

HD can make your blood levels different or abnormal, but in my case all my tests (blood and other non blood tests) came back normal and they found the mass in my chest after a chest xray when I was 6 months pregnant.

As scared as you might be, I had numerous doctors tell me that if they were to have a malignancy, they would want Hodgkin's because of its high cure rate.

Best of luck!

bc99
Posts: 15
Joined: Mar 2004

I can only imagine how scary this must be for you. My mom (at age 53) was diagnosed with stage IV HD last year and after 6 months of chemo, she has been cancer free for almost a year. Just like the previous poster said, my mom's doctors all told her that if they had to have a cancer, they would want HD because the cure rate is so high. I would recommend, if your insurance will cover it, that you seek a second opinion on the diagnosis/treatment options just to be SURE that you are getting the best care possible. My mom was diagnosed and treated at a small community hospital and they did an excellent job. We did initally seek a second opinion at Dana-Farber in Boston, just to be sure we were doing everything possible to help her beat HD. Stay strong and best of luck to you!

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