Still waiting on my results... terrified

andreig
andreig Member Posts: 4 *
edited May 2023 in Lymphoma (Hodgkin and Non-Hodgkin) #1

2 months ago i had a ct which showed an 8 cm(3.1 inch) mass in my mediastinum and two other smaller 2 cm lymphoadenopaties ( i assume these are swollen lymph nodes )

I also can feel pea sized lymph nodes under my jaw.

I am 31 and been losing a lot of weight in the last few months, i look really skinny now.

No real other symptoms other than weight loss and fatigue.. i have plenty of gi issues and terrible acid reflux but that has to be unrelated.

Doctors are suspecting lymphoma, they also said it couls be thymoma or germ cell tumor.

Tumoral marker for germ cell came back negative... some oncologist said that he thinks its t-cell lymphoma although i dont know how he got to that conclusion.

Its been 3 and a half weeks since my needle biopsy from one of the swollen lymph nodes in my chest and i keep calling and they still dont have results ready, im just losing my mind over here.

I keep hoping that its an uncommon presentation of tuberculosis with a mediastinal tuberculoma but no doctor thinks that would be the case.

The reason why i am hoping for that is because i already had tuberculosis in 2017...

Anyway sorry for the vent guys, I am just freaking out, i will update the thread with my results... hopefuly they wont make me wait too long.

Comments

  • po18guy
    po18guy Member Posts: 1,508 Member
    #2

    Sorry to hear this.

    1. You do not have cancer until a pathology report says you have cancer. More than a phrase, it is a survival technique.
    2. Get help for any anxiety, as the stress can kill you.
    3. Please try to avoid making symptoms into a disease - it is very tempting when there is much unknown.
    4. There are 68,069 known human illnesses and conditions.
    5. Our bodies can produce about 150 total symptoms.
    6. By simple math, that is 450+ potential diseases per symptom.
    7. There are about 125 cancer types.
    8. Even if you do have lymphoma, how will freaking out help?
    9. Take life one day at a time, since no one is guaranteed to wake up tomorrow.
    10. See #2 above: Get help for anxiety.
  • andreig
    andreig Member Posts: 4 *
    #3
    https://csn.cancer.org/discussion/comment/1697261#Comment_1697261

    Thanks for the reply. I do have a lot of anxiety ever since I found about the big mass in my chest, wish I could be more carefree but I am obssesing over what could be happening with me almost every second for the past month and a half... maybe I need help, some medication or something to stop my mind from racing into all these pesimistic dark thoughts I get.

    I've read some of your posts and it looks like you've really been through the ringer and overcame a lot!

  • po18guy
    po18guy Member Posts: 1,508 Member
    edited June 2022 #4

    More power to you in seeking and finding peace! Everyone here has survived or is surviving at least one cancer. Look at the forum name: Cancer Survivor's Network. I'll admit that it is much easier looking back at cancer than looking forward to it, but we are resilient, adaptable creatures. Our basic desire is to survive. Even if you are eventually diagnosed with a malignancy, your chances are far better than at any point in human history. Keep on the doctors and nurses so that they keep you in mind and let you know what is next.

  • iwanttoenjoylife
    iwanttoenjoylife Member Posts: 21 Member
    #5

    I too am way too negative, I had a germ cell tumor. My needle biopsy results were told to me in front of my wife who is an optimist. Her reaction was priceless, when they said malignant, she said at least it’s not cancer. Lol. The other responses here are really good advice, there really is no need to over catastrophise (made up word) the unknown. I wish you the best

  • po18guy
    po18guy Member Posts: 1,508 Member
    #6

    Well, press them to get on it, malignant or not. It is not supposed to be there.

  • ShadyGuy
    ShadyGuy Member Posts: 923 Member
    #7

    I have observed over the years the following:

    1). Needle biopsies are not nearly as reliable or definitive as an excised node. Have you considered asking the medical team to remove a small node from your neck? In my various diagnoses over the years the hospital where the biopsy was performed analyzed the sample locally then sent it off to labs for typing and DNA analysis. The hospital knew up front if it was cancer but left typing to specialty labs. They sent the samples to two labs then compared the results.

    2). Do you have MyChart or some similar site? If so you may find the results there.

    3). Are you being seen by a GP or a real cancer center? See a real cancer center!

    4). My non-professional advice (what I would do in your situation) is go to a designated cancer center and request a surgical biopsy.

    5). You have described classic symptoms of lymphoma which is a very treatable disease. It is what it is regardless of what someone says. Your concerns are justified. Just don’t let them overrule common sense and good judgement. Worry is an inborn natural defense mechanism but just a way we warn ourselves. It prods us to take action.

    Best of luck always.

  • andreig
    andreig Member Posts: 4 *
    #8
    https://csn.cancer.org/discussion/comment/1697276#Comment_1697276

    So are you ok now, is the tumor completely gone?

  • andreig
    andreig Member Posts: 4 *
    #9
    https://csn.cancer.org/discussion/comment/1697279#Comment_1697279

    1) I read about this... I think if its lymphoma I will need extra biopsies so they can confirm the suvtype and such.

    2) Unfortunately no, I'm from Romania and it seems like I can't get access to any results I have to keep asking the doctor who performed the biopsy by phone.

    3) They will refer me to a cancer center if the biopsy comes back malignant.

    4) Ill definitely have to do that, just waiting to hear about my biopsy results first, it should only bw a few more days tops now.

    5) Yeah thats the most likely diagnostic. But there are so many subtypes i hope i get one of the more treatable ones.

    I just worry a lot because I know how weak my immune system is and how difficult it will be for me to handle treatment.

    I also know that Romania is not the best country to get this disease in as most doctors dont have enough experience, especially with certain rare subtypes.

    And even if treatment works u have the constant worry of when/if it comes back, just seems like a nightmare to live through that.

    Regardless, I will do what I can, as we all 🙂. Thanks for the words of encouragement, may we all end up being happy and healthy.

  • iwanttoenjoylife
    iwanttoenjoylife Member Posts: 21 Member
    #10
    https://csn.cancer.org/discussion/comment/1697280#Comment_1697280

    My tumor has shrunk to 2.4 cm from the 11 cm and has no activity on a PET scan, it has been four years since chemo. The tumor still pushes on things and can be uncomfortable pain, but I’m ok

  • HarryHook
    HarryHook Member Posts: 7 Member
    #11

    Andreig,

    It has been 10 months since you posted. You expected an answer in a few days, but you haven't updated your situation here. Some of those who wrote back to you are wondering how you are doing and what happened with your illness. Please let us know.

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