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Thread: Diagnosed today

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  1. #1
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    Having a cervical cancer scare

    I'm looking for ladies that have experienced something similar to myself that can tell me something to either prepare me or provide some relief.

    November 2017-I started my period. It did not stop.

    December 2017-went to the GYNO for the abnormal/prolonged bleeding. She ordered a transvaginal ultrasound and bloodwork to test my thyroid. Both came back normal. She prescribed me birth control pills
    January 2018-bleeding has not improved.

    February 2018-went in for my yearly appointment. My doctor was performing surgery, so her nurse practitioner saw me. She looked at everything and did an exam. She did not seem concerned. She said try the birth control for more time and in May if it has not improved to come back. Pap smear came back abnormal, but I was instructed to schedule my colpo when the bleeding stops. HA, what a funny joke...

    March 2018-bleeding has steadily gotten worse. Abdominal pain began and seems to come and go all day. Some cramps are extremely painful, but most of the time I continue to have subtle lingering abdominal pain. Pain also started in my lower back that felt like kidney infection. Made an appointment to GYNO because I'm not waiting until May.

    April 2018- YESTERDAY. Explained to the nurse that I'm now in pain, bleeding has gotten worse and I feel like I'm having a kidney infection. Finger prick indicated that I do not have anemia. GYNO said the next step is performing a hysteroscopy and D&C to clean me out and to take a closer look. She examined me and upon checking my cervix she felt a hard spot on my cervix. She rushed me to the room where they do colpos and took biopsies to be rushed. My pap from February indicated high grade cervical dysplasia. She's concerned that I came to see them in February and now in April something is there. She stated that she is for sure doing surgery on me, but she wants to wait to see what my biopsy results say. I'm going back on Monday (one week) to see her.

    I'm scared. I have a history of abnormal paps, but they always come back as inflammation or not anything to worry about once a colpo is performed. It's almost comical because I know that every other pap I have will be normal and then abnormal. I had a normal pap in 2016, but I also got pregnant so I missed my 2017 pap. Please, if anyone out there has a similar situation please share your story. I've already made the mistake of consulting Dr. Google.
    Last edited by UBLAUREN; 04-10-2018 at 02:38 PM. Reason: spelling errors

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear this. There are undoubtedly women with basically similar experiences, but some will have been benign while others may have been malignant. Which applies to you? Of course neither, as your case will ultimately be unique to you. Comfort while waiting? Stay as busy with life as you can. Maybe do something that you have been putting off. Finish a project or begin a new one. Use your nervous energy for good purpose. If you are a meditative or prayerful person, that always helps.
    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
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    Diagnosed today

    I was diagnosed with cervical cancer today. I don't know much except I have to wait on an appointment with the oncologist. I'm super scared...

  4. #4
    Moderator Top User jorola's Avatar
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    I am very sorry to hear this. I know your head is spinning, heart is racing and stomach is turning. You are wondering if it will ever stop? The next few days and weeks will be hectic to say the least. Grab a good note book and a spouse/significant other or family member or friend to take with you to your appointments. Yes this is all overwhelming so very hard to absorb everything you have been told. The person you bring with you can write down notes for you. You can also write down you questions to ask at the appointments in this book. It is so easy to forget what you wanted to ask once you get in the room with the dr or you think of thinks after you see them and you think about what they said and you want to remember for the next appointment.
    Some things you will be wanting to ask is the type of cancer - (there can be sub types), the stage, what the treatment options are and what the possible side effects of those treatments are. These are just a few I can think of right now. Please know we are here for you. If you need to vent, cry or whatever, we are hear. We will do are best to try to answer questions the best we can or point you in the direction where you can get some answers. Oh btw if you do not have someone to take with you to your appointments check with the treatment center to see if they have a patient advocate - they may be able to help.
    All the best and please keep us posted.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  5. #5
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    I'm so sorry you're going through this. If it's any comfort, I did too. I was diagnosed with cervical cancer, had radiation and chemo, and am cancer free today. It sounds like you closely monitored your health and so it's very likely you caught it early. When is your appointment with the gyn onc? I hope it's soon so you can get some answers.

    As Jodie said, we're here for you. Venting on these forums and getting support from others who could relate was vital to my healing. I'll check back often for updates.

  6. #6
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    Thank you guys. I hope they caught it early, but I'm not sure. I missed my 2017 pap just because I had a baby late in 2016 and having a newborn kept me sidetracked. My pap in March of 2016 I was pregnant and it came back normal. I literally have abnormal paps every other year, but they always say I'm fine and do nothing. My appointment with the gyn onc is on Wednesday afternoon. Even with the months of bleeding you think I might have caught it early? I'm petrified that it's spread. I've never been more freaked out before in my life.

  7. #7
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    I do still think so. Most types of cervical cancer move very slowly. Waiting 5 to 10+ years is more likely to result in stage 2 and above. Also the bleeding could have been caused by something else entirely. I know the wait is awful. Once you find out more and get a treatment plan in place, you'll hopefully feel more at ease.

  8. #8
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    Hey everybody! I hope you all are doing well. Iím not doing so hot right now. I had my RH a few weeks ago and the surgery itself went fine. However, my path report shows lymph node involvement. I am devasted. I canít help but obsess that my life is over. Iím supposed to start radiation and chemotherapy in a few weeks.

  9. #9
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    Hi there, I've been thinking about you. Thanks for letting us know the RH went well. That's great!

    Sorry to hear there are next steps. I had lymph node involvement too, and radiation and chemo. I can answer any questions you have about either. These treatments combined are very effective at eliminating cancer cells. Do you know how many doses of radiation and what type of chemo you'll be getting?

  10. #10
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    Not exactly. I know treatment is supposed to last 6 weeks. Cisplatin is the drug Iím getting. But I am going to get a second opinion before I start the treatment. I donít really want to because itís far away, but i guess itíll be better that way. Iím scared this is going to kill me and that Iím doomed. I have family members that are making me feel like I am terminal or something. My mom is getting advice from medical people she knows and has herself so worked up about it that I feel even more so like this is going to kill me. Iím so terrified. Iíll go through whatever torture it takes to get rid of this crap, but Iím overwhelmed with thoughts that itís going to come back. My gyno upped my anti-depressants and is getting me anxiety meds. Obviously I need them.

 

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