First Post - Advice

KayTeal
KayTeal Member Posts: 2
edited November 2012 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I'm sorry this is so long.

My mom recently had a biopsy on a rapidly growing lump she discovered on her back (2-3 months ago it was the size of a pimple and now it’s about 5 cm). Earlier this week, she returned to hear the results but was not given much in the way of answers. Instead, the doctor made an appointment for her at a hospital in two weeks, where another test which looks at the cell markers (T-cell and B-cell) will be administered. She was told she’d be more given details then and that there will be a group of specialists there to examine her case and provide recommendations on further treatment. The doctor did give my mom a print out of the biopsy findings though, which we both looked over. Of course, most of the medical terms mentioned meant almost nothing to us but some of the terms were quite disconcerting.

According to my mom, the doctor said she did not know yet whether the findings were bad or not, and I don’t even think she expressly said it was ‘definitely cancer’. After researching basically everything the test sheet had on it, I’m left with such a sick feeling and I don’t even understand how the doctor could say there’s a possibility this isn’t bad. Under DDx it says lymphoma B cell (amongst other things) which, to my knowledge, seems to fit quite clearly with the rapidly growing lump (plaque) on her back. It also says ‘appears consistent with cutaneous lymphoma’ and that a differential diagnosis will look at anaplastic large T-cell lymphoma and diffuse B-cell lymphoma. After everything I’ve read over the past few days, I just feel so horrified and scared, and I can’t believe we have to wait another two weeks to find out any more information.

I haven’t told my mom about anything I’ve read because I don’t want to scare her or have her in a state of worry for the next two weeks. It’s difficult for me to believe she doesn’t have lymphoma, but a small part of me still clings onto the hope that maybe I’m the one who’s overreacting. I’m not a doctor or anything so maybe I’m reading this all wrong. The only symptom she has is this growing lump on her back (there’s also a small one on her thigh, near groin, which just frightens me even more since it makes me think it’s spreading); she hasn’t had any fevers, loss of appetite, night sweats or any fatigue, nor are the lymph nodes in her throat, armpit, groin or stomach swollen. Recently she had a routine checkup and her blood work was fine, as were the results of her mammogram. She’s not in any pain and I honestly can’t even remember her ever being bedridden at any point in my life (20 years and not even the flu). I do know that some people do not experience any symptoms at all so the lack of symptoms doesn’t mean it’s nothing.

Part of me wants to share with her the information I read, because I can’t even imagine how devastating it’d be to hear all this in a single doctor’s visit. It’s all very confusing right now and I’m unsure if it’s better to keep this to myself or inform her of the possibilities. I don’t want to depress her or give her negative thoughts, but I also don’t want it to be some completely unexpected shock two weeks from now. I’m torn on whether I should tell her or not… I want to protect her but I also want to prepare her.

I read that being informed is important, but is this only for those who have an actual diagnosis?

Comments

  • Podie1956
    Podie1956 Member Posts: 6
    #2
    Being informed IS important,
    Being informed IS important, but you need to step back and take a few deep breaths. You can keep educating yourself, but you need a definite diagnosis before you know what you should be researching. It's so easy to make yourself crazy worrying about this before you even have the facts. Can you go to the appointment with your Mom and have a list of questions ready for the doctor?
  • KayTeal
    KayTeal Member Posts: 2
    #3
    Podie1956 said:

    Being informed IS important,
    Being informed IS important, but you need to step back and take a few deep breaths. You can keep educating yourself, but you need a definite diagnosis before you know what you should be researching. It's so easy to make yourself crazy worrying about this before you even have the facts. Can you go to the appointment with your Mom and have a list of questions ready for the doctor?

    Thanks
    Thank you for your reply. I really do need to take a step back, it's just hard not to freak out when just reading the biopsy report (I've gone over it so many times already). I will be going to the appointment with my mom, hopefully things will turn out OK.
  • po18guy
    po18guy Member Posts: 1,508 Member
    #4
    You can relax a bit....
    Cutaneous (skin) lymphomas are almost always indolent, or slow growing - although a few are faster growing. Some are treated topically (steroids or topical chemotherapy) or with radiation and may not need chemotherapy. While mom "may" have the rare Cutaneous Large Diffuse B-Cell Lymphoma, there is still no reason to panic. Here are links to information on both B and T-Cell cutaneous lymphomas.

    http://www.lymphoma.org/atf/cf/{aaf3b4e5-2c43-404c-afe5-fd903c87b254}/CBCL_11.11.PDF
    http://www.lymphoma.org/atf/cf/{aaf3b4e5-2c43-404c-afe5-fd903c87b254}/CTCL_11.11.PDF

    There are many of us that had aggressive, systemic lymphomas, at late stage with bone marrow involvement, with poor prognoses, and are still here years later. There are new treatments appearing on a regular basis that are less toxic than traditional treatments. Cutaneous lymphomas can generally be managed and long lives lived.
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #5
    po18guy said:

    You can relax a bit....
    Cutaneous (skin) lymphomas are almost always indolent, or slow growing - although a few are faster growing. Some are treated topically (steroids or topical chemotherapy) or with radiation and may not need chemotherapy. While mom "may" have the rare Cutaneous Large Diffuse B-Cell Lymphoma, there is still no reason to panic. Here are links to information on both B and T-Cell cutaneous lymphomas.

    http://www.lymphoma.org/atf/cf/{aaf3b4e5-2c43-404c-afe5-fd903c87b254}/CBCL_11.11.PDF
    http://www.lymphoma.org/atf/cf/{aaf3b4e5-2c43-404c-afe5-fd903c87b254}/CTCL_11.11.PDF

    There are many of us that had aggressive, systemic lymphomas, at late stage with bone marrow involvement, with poor prognoses, and are still here years later. There are new treatments appearing on a regular basis that are less toxic than traditional treatments. Cutaneous lymphomas can generally be managed and long lives lived.

    Overload
    Kay,

    First, po is correct (I have no doubt)in all that he replied. The links are a start. If the biopsy stated that it is "B cell lymphoma," then, well, there is definitely some sort of (B-cell)lymphatic cancer present. Initial denial is a pretty common reaction, but to the generic question, "Does she have cancer?", the answer seems to definitely be 'yes,' unless there was some sort of huge, and rare, technical mistake. That much it seems you can be certain of at this early point.

    My intro to cancer was following a CT, and I really did not even think of cancer at the time (the CT was for heart pain [angina]). I went in for the CT results, my regular doc was on vacation, and a female doc filling in for him, just out of residency as an internal medicine doctor, gave me the results, stating that I had tumors "all over." She walked me to a surgeon across the hall who had a lot of cancer surgery experience to schedule a biopsy(he was not an oncologist himself, however). He looked at the CT (via e-mail) and looked at me and said, "This is lymphoma, and it is all over the place." Welcome to cancer !

    It ended up being over a week before I had a biopsy, then I had a brief wait to see him for results, and after that it took another two weeks for me to see my first oncologist. All together, it was about six weeks before I finally met the hematologist who would be my onc, and close to two months from the first ct results before I received my first infusion. So, waiting can be tough, very tough.

    I would write down your questions and ask them of the doc guiding her case. Use the biopsy code from your printout of the results online and you should be able to read about the cell type(s) involved. Once she is staged, it will be much easier for you to focus on just the relevant particulars of her case. They say med school is like "Learning to drink froma fire hydrant," and assimilating all of the terminology and such from the docs can bve similiar to that. Just know that as more fact are gained, the scope of what you have to review will get narrower and narrower.

    Of course, ask questions here any time,

    max

    .

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