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Thread: 31 years old, waiting for biopsy results, so scared

  1. #1
    Newbie New User
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    Feb 2019

    31 years old, waiting for biopsy results, so scared

    Last week I became aware of a large, hard lump under my left armpit. I have a weird feeling it had actually been there for a while and I just hadn't noticed it.

    I saw my primary care doctor Monday, and she ordered some blood work (CBC and sed rate - both came back totally normal) and an ultrasound. (She also did a breast exam - normal.) Had the ultrasound on Tuesday, which confirmed it was "a lymph node" (that's all my primary care doc said when she called to give me the results), and today I had an ultrasound-guided biopsy. I should get the results sometime next week. The radiologist who did the biopsy said something about getting samples of "one of those nodes," and when I asked he confirmed there was actually more than one enlarged lymph node in there, the first inkling I had of that.

    I'm 31. I have a nine-month-old baby, and I just started a new job that I absolutely love a month ago. I'm so, so scared. I feel like if it's cancer, and it's already in multiple lymph nodes, that basically means I'm dying. I have a good support system (husband, friends) and kinda feel like I could handle a diagnosis of some form of treatable cancer, I could handle needing chemo etc. with a good chance of eventually being okay, but I just have this horrible black feeling that it's going to turn out that I'm dying and there's nothing they can do.

    I don't really know what I want out of posting this. I just don't want to talk to anyone I know in real life until I get the diagnosis. Obviously my husband knows what's going on, but I'm trying to hold it together for his sake.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Whoa! Slow down a bit. OK, slow down a lot! Very sorry to hear of this. First, bear in mind that young motherhood is a time of extreme worry and stress. That is the human condition. It is not pleasant, but it is part of life. Now, secondly, know that lymph nodes are not cancer detectors. They are the hundreds of places in your body where lymphocytes (white blood cells) hang out, waiting to be activated against pathogens such as bacteria, viruses and fungi. We ingest or inhale millions, even billions of them on a daily basis - that is why we have this incredibly sophisticated immune system.

    Speaking of which, enlarged lymph nodes are an integral part of that system. When infection is detected (pretty much 24/7/365), they spring into action, filling with lymphocytes ready to do battle in the area where the infection is detected. When they do that, the nodes enlarge. And, since lymph nodes are all connected to each other, several in the immediate vicinity may enlarge. This is the normal functioning of our immune system.

    As to your particular case, underarm nodes often enlarge because the underarms, mouth/throat and groin are where we develop many of our infections. For example, an ingrown hair, leading to localized infection, causes just such a response. Remember as a child when doctor would feel around your jaw and underarms? Doctor was not looking for cancer, but the normal signs of common infection.

    You have a young one. Children of all ages are infection factories, as they have only a baby immune system. Their getting sick is part of the strengthening of their immune system. Their systems are so immature that they receive immunity even from breast milk. Add to this the fact that we are still in the middle of cold and flu season. At this point, this is all much more likely to be some sort of viral infection. BTW, there are millions of unknown viruses on this earth.

    However, could it be a malignancy? Yes. A death sentence? Almost certainly not! For perspective only, I have had three cancers total. Two aggressive non-Hodgkin's lymphomas and a bone marrow cancer known as MDS. Stage IV twice. Probably 100 tumors total and involvement of the marrow, spleen and small intestine. In 2015, I had all three simultaneously. Kindly note that I appear to be very much alive. Cancer is generally not the plague or certain death sentence that it once was. Everyone posting here can attest to that.

    I would think that more imaging is in store, which is a good thing. If doctor want to take a biopsy, here is some advice from the school of hard knocks: Do not agree to a 'needle' biopsy, as they are almost worthless. Too many false negatives. The gold standard is to excise (surgically remove) an entire lymph node. It is more serious than having a boil lanced, but not much. Walk in, walk out. Small scar. Losing a node is inconsequential, as you have hundreds, maybe even a thousand of them.

    Please let us know what comes to pass.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  3. #3
    Newbie New User
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    Feb 2019
    Thanks. I know I probably sound ridiculous.

    It was a core needle biopsy that I had today - he took four samples. (Ouch.) I hadn't even thought about false negatives! Oh dear, now I'll wonder about that if the results come back with good news.

    They said I'll get the results back second half of next week. Not sure how I'm going to put this out of my mind between now and then and function in the meantime - going to work, taking care of my kid, etc. Ugh. My doctor said after her initial exam that the lump did not "feel scary" to her, and my blood work and breast exam were normal, and I'm trying to take all of those things as positive signs...

  4. #4
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Needle biopsies are cheap, quick and get anxious patients (in some case, hypochondriacs) out of doctor's office. They have some use in cases of suspected relapse, but that is about it. I see them as trying to determine what is occurring inside a house by peeking in only one window.

    I also would counsel you to update your thinking regarding the most feared word in our culture. First, you do not have cancer. How can I say that? Because only a pathology report can state that you have cancer. Nurse cannot. The web cannot. Even doctor cannot.

    Additionally, your demographic is not in line with the vast majority of cancers. As to deaths from all causes, under 25 (think YouTube) and over 65 (falls, heart attacks, geriatric illnesses and general decline in health) are the peaks. Under 25 your immune system is still maturing and over 65 it is declining.

    We have had consistent posts from new mothers who range from concerned to terrified of cancer. I know of not a single case in which cancer has actually been diagnosed. So, maybe pick something you love doing and do lots of it while awaiting the results.

  5. #5
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    Feb 2019
    Well, no biopsy results yet obviously, but here's a fun update: after being in excruciating pain all day that ice packs and extra-strength tylenol and advil couldn't even put a dent in, I dragged myself to urgent care (well, my husband dragged me, baby in tow) and was told that they appear to have nicked a blood vessel during the biopsy and caused a hematoma. Up there with the transitional phase of labor among the worst pain I've ever been in, way worse than when I was postop from my c-section. Am now on hydrocodone and as long as I sit perfectly still the pain is tolerable.

  6. #6
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    Feb 2019
    Typed a reply that seems to have been eaten by a glitch? Anyway, today's update is that I went to urgent care after being in excruciating pain all day and was told they appear to have nicked a blood vessel during the biopsy and caused a hematoma. Am now on hydrocodone.

    Urgent care doc said that the ultrasound report (which I do not have access to) said that my mystery lymph node lump was 4cm (HUGE!) and vascular. Am now googling whether vascular = more likely to be cancer, even though I know I shouldn't...
    Last edited by thatbirdlady; 02-10-2019 at 02:24 AM.

  7. #7
    Moderator Top User
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    Mar 2010
    Hi, just chipping in to say in the scheme of things 4cm is not huge and is still not indicative of cancer it can be raised for many reasons.
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits

    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  8. #8
    Newbie New User
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    Feb 2019
    Ugghhh I can't stop thinking about this. I wish they'd just given me a copy of the full ultrasound report. At this point I know that the lymph node(s) is/are:
    -Very large (4cm)
    -Fairly round
    -Nontender (no redness or pain... at least not until the hematoma caused by the biopsy!)

    All of these point toward malignancy, according to my incessant Googling (I know, I know, I know). The only point in the other direction is my age.

  9. #9
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    What are you doing for your stress and anxiety level? It cannot be of any help should you receive an unfavorable diagnosis. I mean absolutely no offense, but with the limited info we have, it almost sounds like a touch of OCD - which is understandable, but still not beneficial. Be aware that Google is a mortician, not a doctor.

    This may sound odd, and I may be unique in this regard, but I have found it easier to have cancer than to worry about it. Cancer is limited, while worry runs wild. Fortunately for us, both are treatable.

  10. #10
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    Feb 2019
    Quote Originally Posted by po18guy View Post
    This may sound odd, and I may be unique in this regard, but I have found it easier to have cancer than to worry about it.
    100% agree. At this point I'd rather have the diagnosis than all this uncertainty and fear.


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