NHL spread to the heart?

grosie
grosie Member Posts: 5
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I am wondering if anyone else has experienced this? I have had shortness of breath and a cough for quite a while, in and out of the hospital during 2007, with all the testing I had done, nothing was found to be wrong. After complaining quite a few times to my GP he finally referred me to a cardiologist who did extencive testing and found I had "something" looking like a mass between the upper chambers of my heart. They did a TEE test on an outpatient surgery basis, and my husband was told it was a mass, however, not sure if it is a tumor or a lymphnode. He did not do a biopcy during the procedure, made me very upset to find that out. Seeing the cardiologist again on Friday to find out what the next step will be. Was told if it is a tumor they could hopefully shrink it with radiation. By the way,I have never had any treatment since my dx 3 years ago,I am in a wait and watch mode. I am not seeing my oncologist until the end of this month and is very upset about the whole situation. I guess what I would like to know,has anyone experienced this in conection with NHL, and how is the biopsy done? I am not able to fing out much about it on the web.
Any information will be greatly appreciated.
Thank you and bless you all. Hopefully we'll all have a fairly healthy 2008.
Grosie

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hello,

    I suggest you contact the American Cancer Society's National Cancer Information Center. Because different chemotherapy treatment my have different effects, they would be best source of information. Cancer Information Specialists are available 24 hours a day at 1-800-227-2345.

    Take care and be well,

    Dana
    CSN Dana
  • donaldo
    donaldo Member Posts: 36
    #3
    That sounds just like what my girl friend went through for several years, before we started dating. If the mass hasn't grown in three years thats a good thing, but I know from experience how frustrating it was that they weren't even trying to come up with a clear diagnosis. The doc claimed that the only way to do a biopsy in that area is to crack the chest, and he didn't want to do that. He never did answer the question why it couldn't be needle biopsied. A couple of months ago I finally had a little sit down with him, and explained that if something wasn't done to diagnose the problem, she was going to switch to one of my doctors who would do something. We finally reached a compromise, and a PET scan was performed. The scan finally showed that it was a cyst not a tumor. This was great news, but also showed that his lack of action had her going through the wrong program for several years.
    The moral of the story is; if the doc doesn't want to diagnose the problem, find a new doc.
  • grosie
    grosie Member Posts: 5
    #4
    donaldo said:

    That sounds just like what my girl friend went through for several years, before we started dating. If the mass hasn't grown in three years thats a good thing, but I know from experience how frustrating it was that they weren't even trying to come up with a clear diagnosis. The doc claimed that the only way to do a biopsy in that area is to crack the chest, and he didn't want to do that. He never did answer the question why it couldn't be needle biopsied. A couple of months ago I finally had a little sit down with him, and explained that if something wasn't done to diagnose the problem, she was going to switch to one of my doctors who would do something. We finally reached a compromise, and a PET scan was performed. The scan finally showed that it was a cyst not a tumor. This was great news, but also showed that his lack of action had her going through the wrong program for several years.
    The moral of the story is; if the doc doesn't want to diagnose the problem, find a new doc.

    Donaldo:
    Thanks for replying to my listing. I am glad everything went well for your girlfriend, it's unfortunate that she had to agonize over a period of years. I just found out and needless to say I am very scared. I have never heard of this before. I do however have an apt, next week to have a PET to confirm if is a tumor. If they do have to do a biopsy I was told that they would go through an artery and not the chest so I guess that's a good thing. I was also told a biopsy in the heart area can be very dangerous. By the way, I am under the care of 2 Dr.'s, my oncologist and a cardiologist, and hopefully they will decide one way or the other very soon. The waiting is what is tearing me appart, thanks again, god bless.
    Grosie
  • betwixt
    betwixt Member Posts: 1
    #5
    They believe I may have Lymphoma, as I have swollen lymph nodes near the heart area, the Oncologist requested that a biopsy be done by a surgeon (Gynaecologist Oncologists) who was removing a cyst at the time as they discovered a cyst with the CAT/PET scan as well that needed to be removed, the Gynaecologist Oncologists who I was referred to said to me that he could do the biopsy but the Morbidity rate was “extremely high” to me, he didn’t seem confident enough to do this procedure to me as they really focus on the area below the belly button mainly, he said if I was his mother, daughter, sister or wife I would strongly recommend not having this done, as the Lymph nodes they are after are right next to the Aorta of the heart and some other vital organ which I can not remember, so I told him to remove the cyst and forget about the biopsy, I figured I rather die with Lymphoma in a few years time than on the operating table in a few weeks time trying to get a biopsy.

    I realise that if they get Indolent Lymphoma early there is a higher success rate of cure, but at what risk?

    The Oncologist who was filling in for my original Oncologist who was on holidays at the time did say that if I have Lymphoma it is the indolent type as the growth is slow, I did tell him that the Gynaecologist Oncologist didn’t seem confident to do the Biopsy and he said maybe we need to get a surgeon who is confident who works in the area of the abdomen all the time, he left the room and came back and said that he was going to leave it as it is and that they could try and get a lymph node further away, which might not give us the correct reading were looking for, he should have come back into the room and said in such short notice, I could find any one, which would have made more sense to me.

    When they removed the cyst a few days ago they removed my right hand tube and ovary and had a look around in the abdomen to see if there was anything causing the Lymph nodes to swell and they said everything looked fine, they couldn’t see anything that would be causing the Lymph nodes to swell, even the cyst appeared normal and they have seen plenty of them in their time, they said that the results to confirm what they believed would take ten days regarding the cyst.

    I am off to see my Oncologist 26th of March, who will be disappointed to hear they didn’t biopsy it, but at least I alive for now.

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