Worried newbie just a few questions please

Good morning ..I just have a couple of questions...I first was on colon board thinking the pain was my colon abdominal area..well colonoscopy fine...the crampy lower back side pain has me think ovarian...here is my question ..in hospital I had CT of abdomen/pelvis with and without contrast and just showed small cyst on left ovary ... Had another CT 3 weeks later in ER showed same...had 2 vaginal US within 6 weeks one said same complex cyst and small fibroid...the next one showed same cyst and small amount of fluid left ovary and right ovary wasn't detected. Well with the discomfort on my right side I demanded a 3 US vag ...at the hospital because all gyn said was lets re check in 2 months. Now did .ca 125 bloodwork yesterday and with reading all the ways high counts could be a factor I'm scared I shouldn't of taken it if comes backs really high . I had ablation done years ago and have no period ...never have bleeding ..just always feel the way you do when your about to.start. ..sorry for rambling just need to get some options on how or what you think about this and what or if I need to be doing anymore...I'm 46....thank you all...your board is sometimes scary but absolutely comforting......God Bless ...my faith helps

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,486 Member
    Mwikoff46, I think you said

    Mwikoff46, I think you said you had a CA125 test (blood draw yesterday) and you are worried if that was the right thing to do?  The CA125 is a tool used to see if there may be possible oc.  Anywhere up to about 30 is considered normal.  Was it good to do it?  I would say "yes" and that takes a few days, 6 - 10, for the results to come back.  If it elevated above that I would suggest finding a gynecologic oncologist to help you find out exactly what is going on.

    I am not a doctor and everyone is different, but you should push to get some answers.  

     

  • Mwikoff46
    Mwikoff46 Member Posts: 40
    edited December 2017 #3
    Thank you for the reply...I

    Thank you for the reply...I guess I just would of thought out of 2 CT and 2 US they could of told if I had cancer. Now with reading all the things that can make a .ca 125 blood test have high readings and not really the the concret way of saying u do I'm worried with having 2 cyst and fibroids its already going to be high. I wish they would just give me a full hysterectomy and be done. Im making myself ill with all the worrying

  • abrub
    abrub Member Posts: 2,174 Member
    Ask for a CEA

    My appendix cancer was found on my ovary - and my rt ovary wasn't detected during an U/S.  Worth checking.  Hopefully, it's all nothing, but one of the reasons I check the ovarian board is that I know people who were treated for OC when it was appendix cancer (as is mine.)  CEA is a test for colorectal cancers.  (My CA125 and CA19-9 were normal  before my hysterectomy, where my cancer was found by chance.)

  • Mwikoff46
    Mwikoff46 Member Posts: 40
    abrub said:

    Ask for a CEA

    My appendix cancer was found on my ovary - and my rt ovary wasn't detected during an U/S.  Worth checking.  Hopefully, it's all nothing, but one of the reasons I check the ovarian board is that I know people who were treated for OC when it was appendix cancer (as is mine.)  CEA is a test for colorectal cancers.  (My CA125 and CA19-9 were normal  before my hysterectomy, where my cancer was found by chance.)

    Thank you for replying ...so

    Thank you for replying ...so an endoscopy or colonoscopy wouldn't detect this?...I also did 2 CT scans along with abdominal US and 2 vaginal US...last night was horrible the pain on right side around to my back. I know going to ER they won't do much but the pain is scaring me . 

  • abrub
    abrub Member Posts: 2,174 Member
    Mwikoff46 said:

    Thank you for replying ...so

    Thank you for replying ...so an endoscopy or colonoscopy wouldn't detect this?...I also did 2 CT scans along with abdominal US and 2 vaginal US...last night was horrible the pain on right side around to my back. I know going to ER they won't do much but the pain is scaring me . 

    I had a clear colonscopy just prior to my dx

    Appendix cancer doesn't show in a colons copy unless it has spread to the colon. Would they consider an exploratory laparoscopy to see directly what's going on?

  • Mwikoff46
    Mwikoff46 Member Posts: 40
    edited December 2017 #7
    abrub said:

    I had a clear colonscopy just prior to my dx

    Appendix cancer doesn't show in a colons copy unless it has spread to the colon. Would they consider an exploratory laparoscopy to see directly what's going on?

    What specialist

    What specialist do I push this from gyn? 

  • abrub
    abrub Member Posts: 2,174 Member
    You could ask your gyn

    That's where I'd start.  If it turns out to be nothing - great.  If it turns out to be appendiceal, you will want to get to an appendix cancer specialist.  If you have a major cancer center near you, you might ask for a consult there.  My symptoms were passed off as nothing for several years.  When I finally had surgery, surprises were found, and my gyn found my appendix cancer.

  • Mwikoff46
    Mwikoff46 Member Posts: 40
    abrub said:

    You could ask your gyn

    That's where I'd start.  If it turns out to be nothing - great.  If it turns out to be appendiceal, you will want to get to an appendix cancer specialist.  If you have a major cancer center near you, you might ask for a consult there.  My symptoms were passed off as nothing for several years.  When I finally had surgery, surprises were found, and my gyn found my appendix cancer.

    I'm kinda feeling pushed off

    I'm kinda feeling pushed off by my GYN so that's why I pushed for the ca125 bloodwork and repeat US ...I'm just wonderimg if I should go ahead and schedule with a gyn oncologist and take my concerns there or just find new GYN and see what they say. Iv had 2 CT scans of the abdominal and pelvis and 2 US ....but I just don't feel right ....I guess world will flip once bloodwork is back this week. I do have a repeat transvaginal US Friday to see if they see more . I'm just not knowing what to do. 2 ER visits overnight hospital stay emergency colonoscopy/ endoscopy I just wish I knew somethimg so I can get with whatever. 

  • Joy1955
    Joy1955 Member Posts: 1
    Joy1955

    I am 62 years old, recently had a cat scan permormed at the emergency room due to me having severe lower abdominal pain and disconfort. The scan showed 4.9 free fliud left ovary cyst , this has grown since my previous scan 4 montha ago, it was 4.1 at that time. My questions are , what are the chances this is cancerous, its taking forever for all referrals to get through to a gyn to see me and Im scared out of my mind. I lost my maternal grand mother to ovaian cancer and I was told by her doctor at the time that ovaian cancer skips a generation which makes my sister and I prime candidates. I have been fighting bacterial infections since August of this year, UIT'S , Yeast, Baterail Vaginosis , then the vicious cycle starts again. During all this is when the severe lowe abdomin pain started and I ended up at the ER the first time. My primary care doctor has referals in for me but so far no one has room on the schedule for me to be seen. 

    Im alone and very scared, I remember well all the hell my porr grandmother went through, that vision will never leave my mind.

    Hope someone can advise me or ease my fears.

    Thank you

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    Tests

    All I can say is that if you don't feel right, keep pushing for more tests.  I had two ultrasounds that looked relatively normal.  Nothing showed up on a colonoscopy a few months earlier.  After complaining over and over again about pain, my nurse pracitioner ordered yet another US, and there was cancer all over the place, where it hadn't been 7 weeks earlier.  Don't let them put you off.  Keep after them or find another doctor.  A gynecolofic oncologist is the only specialist you want to consider for ovarian cancer, but some won't agree to see you until you have a fairly certain diagnosis of cancer already.  Joy, I would continue to keep after your doctors, but with everything else going on, I would want to consult with someone who looks at the whole body and the source of your symptoms, like a functional medicine doctor or naturopath.  I consulted with a naturopath throughout my treatement and beyond and she helped me get super heatlhy after I was done with treatment.  That is who I credit with my continued success.  A healthy body does not develop cancer.  I thought I was healthy before my diagnosis, but I had no idea how unhealt6hy I really was.  Good luck.

  • Mwikoff46
    Mwikoff46 Member Posts: 40
    edited December 2017 #12
    Tethys41 said:

    Tests

    All I can say is that if you don't feel right, keep pushing for more tests.  I had two ultrasounds that looked relatively normal.  Nothing showed up on a colonoscopy a few months earlier.  After complaining over and over again about pain, my nurse pracitioner ordered yet another US, and there was cancer all over the place, where it hadn't been 7 weeks earlier.  Don't let them put you off.  Keep after them or find another doctor.  A gynecolofic oncologist is the only specialist you want to consider for ovarian cancer, but some won't agree to see you until you have a fairly certain diagnosis of cancer already.  Joy, I would continue to keep after your doctors, but with everything else going on, I would want to consult with someone who looks at the whole body and the source of your symptoms, like a functional medicine doctor or naturopath.  I consulted with a naturopath throughout my treatement and beyond and she helped me get super heatlhy after I was done with treatment.  That is who I credit with my continued success.  A healthy body does not develop cancer.  I thought I was healthy before my diagnosis, but I had no idea how unhealt6hy I really was.  Good luck.

    I m doing the same thing iv

    I m doing the same thing iv had 2 CT and 2 vaginal US in the past 2 mths and still in horrible pain so I pushed for another US I'm having tomorrow at the hospital . I did .ca 125 and results came back at 10 ...

  • Betsy L
    Betsy L Member Posts: 8
    How's it going?

    Mwikoff46 and Joy1955,

    Do either of you have updates? 

    If you feel pushed off, PLEASE find another doctor! I know it's hard, but I am so tired of hearing stories of women being diagnosed after having symptoms for YEARS! If you can find a gyn/oncologist, make an appointment with them. I had a vague diagnosis of endometriosis or "maybe" cancer which ended up being stage III cancer. So you might not have to have a firm cancer diagnosis to get an appointment. 

    Colonsocopies will not diagnose OC.

    Best of Luck!

    Betsy

     

  • Swtpony
    Swtpony Member Posts: 1
    Betsy L said:

    How's it going?

    Mwikoff46 and Joy1955,

    Do either of you have updates? 

    If you feel pushed off, PLEASE find another doctor! I know it's hard, but I am so tired of hearing stories of women being diagnosed after having symptoms for YEARS! If you can find a gyn/oncologist, make an appointment with them. I had a vague diagnosis of endometriosis or "maybe" cancer which ended up being stage III cancer. So you might not have to have a firm cancer diagnosis to get an appointment. 

    Colonsocopies will not diagnose OC.

    Best of Luck!

    Betsy

     

    Low Grade Ovarian Cancer Stage pT2b-1st time writing my story

    For many months I was feeling tired, discomfort in my abdominal area, very gaseous, and felt something just wasn't right. I had severe endometreosis and this was nothing like it. Thought it could be allergies due to weather change or stress. Went to my doctor and found nothing. A couple months later still feeling as though something was off. Went to an Ob/Gyn who was only supposed to do my annual well woman exam. This changed everything. He sat me down and wanted to hear from me before proceeding. I told him. He then said I want to do a transvaginal ultrasound (tus) after I do the normal check (I.e. Check for any signs of abnormalities or anything concerning). He felt a nodule in my thyroid that I didn't know was there that another doctor missed in their exam. Pap smear next then tus. During tus the ob/gyn froze and grew very concerned followed by another female doctor who also made concerning statements. I had a mass over 5cm that appeared multinodular, solid, and had blood flow. Something I never had with endometreosis. I had cysts, but none that looked like that. I wasn't freaking out simply due to the number of false alarms I have been through due to my history and family history (my endometreosis, mother's breast cancer diagnosed in her 40s and now deceased from same, aunt (her sister) who is in remission from second breast cancer recurrence, and grandmother (their mom) who also had breast cancer). Ob/gyn immediately ordered blood work including CA-125. He then took me back into his office and told me he was very concerned and was cinverted that I didn't appear that concerned. I simply told him until I'm told otherwise I will not over worry. I will follow his recommendation. Therefore, he referred me to a gynecologic oncologist based on the mass alone and a general surgeon specializing in thyroidectomies.

    Two days later, received the call with blood work results. All was fine except white blood count and CA-125. CA-125 was high at 285. Not good.  Long story short, oncologist said surgery and if cancer is found total hysterectomy during surgery. Two surgeries scheduled for 1/9/18. He promised he would wait for pathology to advise it's cancer prior to continuing with any further procedure. He kept his promise and thankful he did. Mass was actually 10.5cm, impacted, torn, and spread. Other ovary had a mass that was not detected of 5cm. Both ovaries were affected and implants in other areas.  Ovarian Cancer stage 2b. Directly after that I was having my second surgery of the day; partial thyroidectomy with the understanding that I may need a second surgery as cancer wouldn't be known until thorough pathology is complete. Nodular hyperplasia and no further surgery was required on my thyroid, thank God. Was happy to learn I was only going to have to deal with one primary Cancer. low grade OC does not respond to chemo or radiation well and my oncologist was confident he got it all and didn't want to try chemo or radiation. On 2/12, I go in for more tests to check my marker to verify same. I will be checked every 3 months. My treatment is surgery if any more is found or it reoccurs.

    My recommendation is to listen to your body and your gut. You know if something isn't right. It may or may not be cancer, but it is something. Don't ever stop listening and questioning. You are the manager of your health and are one who determines when you are satisfied there's nothing more to know. Again, listen to your body. I almost stopped and it could have killed me. OC is a silent killer for a reason. A Pap smear can't detect it nor can anything other than surgery (biopsy of site of suspicion) and don't let anyone tell you differently!!!!

    I am 38 and was not wanting a hysterectomy, but living is a good trade for not being able to have biological children. I consider myself lucky as I knew something wasn't right so I just left work, went home, and contacted an ob/gyn because after months I knew something wasn't right still.

  • Harmony09
    Harmony09 Member Posts: 79
    Just my Experience

    First, I am so sorry you are having unexplained pain. I have never had an ablation, and was alarmed by blood clots (DVT) and abnormal mensus, which led to a uterine biopsy. I strongly suggest you consider that. Because....the screening CT scans also showed I had a VERY small fibroid. They can't call a mass in your uterus anything but that until they sample the cells and examine them microscopically. When they did mine, they found serous cells. The surgical staging of my surgery showed clear cells as well, AND, they found a plaque-like region of cancer behind my bladder. The depth of testing I think you would benefit from would be done by an OB/GYN...not the emergency room. They couldn't go but so far for me either. It's simply not their job to do in-depth diagnostics beyond stabilizing the patient. I really hope you feel better soon and find out what's causing the problem. I hope it is just a fibroid;)