New to the site and sooo unsure what to do...

Hello there...new here... I'm still awaiting a diagnosis but was warned to be prepared for Cancer...as this all began only 1 week ago for me.  Long story short went to the ER in terrible pain (thought it was my appendix )..ended up being a sever kidney infection and found a 10 to 13 cm mass on my ovary and it is rigid in position and attached to other parts in my abdomen.  Soooo awaiting my ca125 results and surgery...but was warned who knows how long this will take considering the situation of covid19. I know I should be my own advocate but how?...I knew something was odd last few months.. bad periods..litterly said I feel like I was carrying a basketball in my stomach..and extremely tired alllll the time. Any suggestions as to the rights questions I need to ask or how long is acceptable to just sit in limbo?

Comments

  • Hello @vanlyzz... welcome to the site - glad you are here and thank you for sharing your recent situation.
    Yes, hopefully you can get some answers on that scheduling, depending on your medical condition, province and the current situation.
    So the focus for now is write down all your questions, big or small.
    Review all of these previous posts / topics (the ones about preparing for surgery and treatments) there are many tips and coping techniques everyone has shared.
    Keep in contact with the medical team and support centers. 
    Depending on your province/cancer centre - they should have a patient navigator (or called something else) they help you thru the system.
    Reach out to all supports available. Many such as oncology psychosocial support are still meeting with patients by telephone or video chat.
    Wishing you the very best for some answers soon. 
  • MarilynMarilyn ✭✭✭
    Welcome!  I can't imagine your concern about your health on top of all that is happening with COVID 19.  @Flowergirl has offered some really good suggestions.  Were you referred to a gynecologic oncologist through the ER?  Have you seen a gynecologic oncologist?  This is a specialist  in cancer and specifically any cancer connected to the reproductive system.  The recommendation is that any surgery should be done by a gynecologic oncologist when ovarian cancer is suspected.  So, this would be the first thing you want to confirm - that you have been or will be seen by a gynecologic oncologist.  That is the specialist you need to connect with.  If you don't know, you can follow up with the emergency department and ask them to whom they have sent your referral.  The hospital may have referred you to a doctor at a cancer centre.  It depends on where you live and what hospital you were seen at.  You can then follow up with that doctor's office or department. 

    If you have seen a gynecologic oncologist, then, aside from the timing, some of your questions could be:
    Will they be doing any other tests other than CA125 to try and confirm diagnosis prior to surgery?
    What is the extent of the surgery they are planning and why?

    It is true, in light of everything that is going on, it may be difficult for them to give you any specifics re timing just yet, particularly if you have not yet seen the specialist.  It could take up to a few weeks for all this to happen but you should know at least the name of the doctor or talk to the nurse in the gynecologic oncology department.  You could also talk to your family doctor and let them what is happening.

    Waiting is hard so I encourage you to reach out to your friends and family for support during this time.  There is also great information on this site, as Flowergirl has pointed out.

    If you do receive a diagnosis of ovarian cancer, you can order our guide called, "By Your Side", an A-Z about ovarian cancer.  (You can order it now if you choose).  Here is the link but please note that mailing a hard copy will be delayed but we will send an e-copy right away. https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources

    Let me know if you have other questions and how we might support you.
    Marilyn



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