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Thread: Is it ok to be TOO optimistic?

  1. #1
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    Waiting on result, scared and lonely

    I received the news of possible cancer last Thursday and was scheduled for a couple more tests. I wonít know the result in another 2-3 weeks. The past few days was horrible. I hadnít talk to anyone yet because I donít now them to worry. Iím terrified. I feel like a big disappointment to my family if I have to deliver them a bad news. I just have a 2 months baby. Everything was going great. We have so many plans for this summer. It was so hard to fake a smile in front of my family. My aunt, uncle, and grandma died of cancer. I canít imagine what would happen to my mom if she finds out. The waiting is killing me. The past five days was hell and I have at least another two more weeks to go. I really canít tell any of them. I canít put them through what Iím going through right now. Sorry for the rant. I just need to tell someone my feelings or Iím gonna go crazy. I was able to pull it together, fake a smile, cried a little now and then, but this morning I was crying nonstop. Itís like I was in denial and now everything finally caught up to me.

  2. #2
    Administrator Top User lisa1962's Avatar
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    Alyssa180:

    First off, sorry you find yourself posting on a cancer site. With that said, you do not indicate anywhere within your thread the cause of your alarm. Your doctor says "possible cancer" but exactly what does that mean and how did they get to that point? Most doctors will not even suggest something like that without the pathology report in hand.

    You are a new Mom, new Mom's worry, I mean not just worry but really worry. If you can provide further details that has gotten you to this point, I am sure our members can more accurately respond and try to alleviate some of the fear you are experiencing. I can say, you do not have cancer until pathology proves otherwise. You should be enjoying that baby of yours not working yourself up for what may not be the case. We are not doctors and can not say for certain you do not have cancer but we can try and answer some questions if you can provide some details.

    Lisa

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Words we live by: "You do not have cancer until a pathology report says you have cancer."

    Call doctor and tell him/her that you have fallen apart and are an emotional wreck. Then, follow their advice. With a recent newborn, your body is undergoing a million changes back to normal. This process is not always without difficulties. That does not mean cancer and it does not mean you are dying!

    As Lisa said, we get lots of new mothers here. I cannot recall a single one who was diagnosed with any sort of malignancy.
    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.

  4. #4
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    Twice, I had tumors on the side of my neck; 1st time when I was 2 years old and the second time is when I was 21. Both times were not cancer. 2 months ago I found another lump on the same side of the neck and they did ultra sound and ct scan. My specialist doctor wasnít able to obtain the actual scan on the day of my appointment. He ended up using some kind of camera through my nostril and he said he saw a growth thatís not suppose to be there. He said he wasnít sure if this thing is the cause of the Ďlumpí on my neck or if itís a completely different kind of problem. He said it could be something worse, could be cancer but because he doesnít have the scan on hand he canít really tell. He scheduled me a mri and a surgery to get the tissue tested.
    One thing he said (wasnít sure if it suppose to make me feel better or worse), he said thereís a SLIGHT chance it may not be cancer. In my spinning mind at the time, when presenting two choices of either yes or no to cancer: when a Ďnoí only has a Ďslightí chance, that means the cancer side is winning.
    I never have problems with congestion in my life. Only when I have a cold. I donít have allergies. But for the past few months, I had bad congestion on and off (without the cold).
    One time (after I found the lump on my neck) I had quite a bit of blood in my mucus and it lasted for a few days. I looked it up and Ďblood in mucusí is a possible of cancer. Another sign is Ďrepeating tumorsí could lead to cancer. I googled these information.
    One thing I should mention is my aunt died of throat cancer.

  5. #5
    Administrator Top User lisa1962's Avatar
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    Shame on your doctor for stating what he/she ďthinksĒ without a pathology report (tissue sample) especially for a new Mom.

    Now, you do have a history of benign growth so it is something definitely needing evaluation. Your first error and this is very important, thing to have done was to ďGoogleĒ symptoms. Google is a Master of nothing, has no medical degree and can convince just about anyone they are terminally ill, even the most rational person.

    The symptoms you describe can account for a number of things, least one being cancer. Allergies, virus, etc. Do not put faith in Google. The only time Google may, and I say this lightly, is when an actual diagnosis is made and research is done via reputable sites seeking things such as treatment options, etc.

    For now, stay away from Google, follow though with your appointment and make sure a tissue sample is taken as that is the only way to definitively diagnose cancer. Keep in mind, tissue sample will be examined looking to rule out cancer not to confirm.

    You are very young so age is on your side. An Aunt diagnosed with throat case, in your case, you would be too young but again, we are not doctors. Almost all can look back into family history and find someone diagnosed and past from cancer so do not let that drive your fear.

    Please do let us know how it goes but, in the meantime, you are missing out on enjoying your little one by allowing the anxiety to drive you. We understand you are anxious and extremely worried; most people would be too but things take time to sort out.


    Lisa

  6. #6
    Super Moderator Top User ddessert's Avatar
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    Alyssa, just based on your reported family history of cancer, perhaps you can also consult with a genetic counselor who can review that history and possibly give you some other feedback? If you are in the USA, you can check here.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  7. #7
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    I just had the biopsy surgery yesterday then I scheduled for the result appointment on Monday
    But today the nurse called and said the doctor want to see me tomorrow and mentioned that I should bring someone with me. I donít think itís good news. I finally told my family, theyíre all crying.
    If I do have cancer (throat cancer) what kind of questions should I ask him?

  8. #8
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    Hello Alyssa,

    Given the date of your last post, I assume your appointment took place yesterday and I hope your worst fears were not confirmed by your doctor.

    Do let us know how it turned out.

    Kind regards,
    PBL

  9. #9
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    Is it ok to be TOO optimistic?

    I was diagnosed with stage 3 throat cancer yesterday. I know nothing about cancer. Before all this, cancer to my definition is almost like a death sentence. But my doctor said mine is treatable. Now I know there may be complications but right now Iím trying to discard all the negative thoughts. I should mention that I have depression and I also have a two months old baby. I need to stay strong mentally. I know itís kinda silly that Iím betting all my faith into the doctorís word but itís the only thing that can keep me going.
    My friend in the other hand, is freaking out and googling and asking people all kind of questions about my condition. He said he need to know everything there is to know about this kinda of cancer.
    I worry for him and he kinda make me doubt my action. I questioning myself and kinda feel like Iím in denial. But even if Iím in denial, I see no point of having to find out all the harsh truth and always be afraid. My doctor will take care of me, God will look after me, no one has said anything about me dying, in fact he said my cancer is curable and I will be believe just that.

  10. #10
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    I have stage 3 throat cancer but the doctor said itís curable. Iím trying to be positive and believe that as long as I do what the doctor told me to do (chemo and radiation) I will be find eventually.
    I know there are people (also my friend) who looking up doctors, hospital, treatments, basically any information they can find about their cancer. Iím on the other hand, know absolutely nothing about cancer, putting my faith into my doctor planing out my treatments. Not sure if thatís the right thing to do but I just need to spare my mind and heart to take care of my baby and family.

 

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