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Thread: PLEASE READ and HELP! (SYMPTOMS, waiting on RESULTS...)

  1. #1
    Newbie New User
    Join Date
    Aug 2013

    Unhappy PLEASE READ and HELP! (SYMPTOMS, waiting on RESULTS...)

    I am brand new to this forum, but I am desperate for advice/help... I a completely occluding blood clot in my main ovarian vein last year. I had a almost total hysterectomy, all that was left was my left ovary. I was diagnosed with a blood clotting syndrome where my immune system attacks my blood stream and causes blood clots throughout my body. Well, amongst other medical problems, I started having pain in my lower left abdomen. I tried to tell my primary dr and she kept stating it was from my hysterectomy. I have/had pain CONSTANTLY... this has went on for a year. I finally broke down and went to the ER last week and they found a large mass and multiple cysts on my ovary. They called my primary and told her she needed to see me asap. They told me it could either be hemhoraggic (I bled into a cyst and they just can't see through it) or it could be a tumor/cancer. I saw my primary the next day, she took blood, and referred me to an obgyn with an "emergency-within 3 day" status. I saw him on Thursday and he said he is "baffled" by me. He said he hasn't seen anyone my age (2 with a hysterectomy, blood disorder, and as many autoimmune disorders. Now, we're waiting on his blood results and to determine what/when to do surgery. (whether to remove cysts, whether to leave it alone, why I've been in pain for so long, why the cyst hasn't healed itself IF it is a cyst, what's going on...) I ALSO have numbness in my stomach, a swollen/bloated feeling, pain that radiates into my upper leg and lower back, and a pain after my bladder has been emptied...

    Question: does it sound like cancer? has anyone else had this problem/symptoms? how do you cope through the pain and waiting for results?

    Thank you so much for any input and advice.... I really appreciate it...

  2. #2
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Question: does it sound like cancer?
    Hi CCMom and I am sorry for your worry. We are not doctors here so really can't answer your question with any degree of accuracy. You are doing all the right things by continuing to press your doctors for answers. I will say that your symptoms as you have described them sound to me like they could be caused by a very wide variety of conditions and, yes, cancer could conceivably be one of them.

    Keep in mind that, for most people who come here worried that they have cancer, the eventual answer is "no, you don't". They get to the bottom of things by doing what you are doing - advocating for your own health to the doctors and staff who can help you to figure out what is happening in your body. Keep doing that and, should you need us here because of a cancer diagnosis, we will be here for you. Until then, good luck with everything and let us know what you find out.

    Good health,

    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  3. #3
    Regular User
    Join Date
    Aug 2013
    If the doctor would have had a doubt it was cancer they would have asked you to take a CA 125 test. So don't worry about it.

  4. #4
    Newbie New User
    Join Date
    Aug 2013
    Thank you all for your input. @Amanda84, the obgyn is doing "tumor marker" tests, he didn't tell me what they were called but he said if any of the tests he is taking are positive, he will then refer me to an oncologist... I called today to see if I could be seen earlier because the pain is just outrageous and they said they could move it up a couple of days but they still have not received the results from the lab yet...

    But thank you all so much for your input, I truly appreciate it... I'll update when I find something out. I have a pelvic sonogram on Wednesday as well...


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