Terrified

I just found out that I have ovarian cancer and I am terrified. I have to wait for two more tests (cat scan and ultrasound) and a referral to a gynelogic oncologist. My diagnosis was already delayed by 4 months because of covid, and I'm terrified that these appointments will be delayed also. Any help or advice to talk-down this terror would be appreciated, and/or advice on advocating to get these appointments in a timely manner

Comments

  • @Teacher20, welcome. I'm so glad you found us and have reached out.  I don't think there is anyone among us who hasn't experienced that feeling of terror. 

    I remember the call I got, back in 2017, and going from disbelief to shock to utter terror all in the first day.  What I can say is that I started researching this disease (OCC has an enormous library of information in it's website to draw upon), and reaching out to survivors on sites like this one.  This section in OCC is especially valuable if you have yet to explore it https://ovariancanada.org/Living-with-Ovarian-Cancer/Newly-Diagnosed and I highly recommend ordering  By Your Side to help guide you through the beginning of your journey. For me, the more I learned the more hope and confidence I gained and the more I felt in some control again. 

    And yes, don't fear advocating to get what you feel you want...sometimes  a gentle nudge...sometimes a not so gentle nudge...will get things moving forward faster.  And sometimes you just have to wait.  Regardless, don't despair.  Never before  has there been so much progress in treatment.  Women are beating the odds every day and living longer and fuller lives because so much more is now known about our disease and how to treat it at an individual level.  I can tell you that I belong to a support group in my area where more than 50% of our members are survivors of over 20 years.  

    I don't know where you are...close to a cancer center?  Urban, suburban, rural ? I  suggest reaching out to Marilyn Sapsford ( @MarilynOCC ) the Director of Programs at OCC. She may be able to provide you with more resources available in your specific area.  

    I hope this helps somewhat. Wishing I could be there to give you that hug you likely need right now.  But for the time being, you have many many of us here to give you those hugs virtually.  Good luck and please continue to reach out and let us know how we can help and how you're doing.
  • @Fearless Thank you so much for your encouraging words. I am very thankful to have found this community of fellow cancer patients and survivors to communicate with. I ordered By Your Side and I'm exploring this site gradually. I will reach out to Marilyn Sapsford, as you suggested. As a south-western Ontario resident, I asked for a referral to the London Regional Cancer Program. My doctor suggested a local ob/gyn, but somehow in that surreal conversation where I found out that I have cancer, I had the presence of mind to insist on being referred to a gynecologic oncologistt! Thanks again!
  • @teacher20 My heart is there with you! If I may give you a suggestion that worked for me - Please call everyday to Oncology (with kindness) and say you are ready if there is a cancellation.  I did this and it saved my life.  I was able to get in 1 month earlier which means it was caught that much earlier.   Nothing but prayers and well wishes for you..... as I say my angles are watching over you.  Believe in yourself and say "I will get through this"  Cut out any sugar if you can - I am a firm believer in this.  I am a 3.5 year survivor of Serous Carcinoma Stage 1C Ovarian Cancer.    <3   
  • @beachgirl Thank you for the kind thoughts and suggestions. I just watched the Hope webinar on this site which reinforced my belief in the power of hope and positivity. I will, with kindness, advocate for my further tests and oncologist appointment to be scheduled in a timely manner. Thanks again!
  • MarilynOCCMarilynOCC ✭✭✭
    Hi @Teacher20 Welcome to the site!  I'm so glad that you found us!  I'm the Marilyn mentioned in the discussion so you can find me here or feel free to call or email me at 1-877-413-7970 x231.  [email protected]

    I just want to affirm your request for a referral to gynecologic oncologist in London.  We definitely recommend that you see this kind of specialist if ovarian cancer is a suspected diagnosis.  Studies have shown there are better surgical outcomes if a gynecologic oncologist performs the surgery than another kind of surgeon like an ob/gyn. 

    If you had the presence of mind to ask for this referral in the midst of your shock and fear - you will be able to stick handle whatever may come your way :) .  It may not always be easy but there is a lot of support available for you.  You don't have to go through this alone.
  • Hello @Teacher20 - a warm welcome to the site and so sorry you are having to deal with this disease and the COVID issues. Some very sound support here already and I will add that perhaps you can connect with the Cancer Centre as they may have a "patient navigator" (it may be called something else - a different title) Their job is to improve access to cancer care (prevent delays, follow-up on test results, direct people to resources and support services and get you into the "system". Hope you are doing well today and finding your way.
  • @MarilynOCC @Flowergirl thank you both for your welcome, encouraging words, and suggestions. I now have all my tests booked for this week, and an oncologist appointment next week. "The squeaky wheel gets the grease." The ball was dropped on a few fronts, but I was persistent in following up on referrals, and now feel comfortable that I am into the system. Thanks again, Jane
  • Hi, @Teacher20 , Hi, I'm a 5 time cancer survivor, I'm fighting ovarian for the 4th time, stay strong and being scared is part of the fight, the only thing you can really control is your attitude, keep your body as healthy as you can, then live life to its fullest, don't leave time for alot of doubt. I pray and have said a prayer for you. My motto "cancer picked the wrong Girl to Fight with!" Hope this helps.
  • Hello @Teacher20. welcome to the group. I was diagnosed last fall and was told it was good timing. My local gyn said new policies are in effect and with a cancer suspect she is not allowed to deal with me and had to refer me to a cancer clinic to see an gyn/oncologist. As much as that was unnerving at the time it may have saved my life. The new policies are a referral to a gyn/oncologist must be made within 2 weeks of the referral and surgery as soon as possible. Now with covid I am not sure what that means but you should be having all tests and appts very soon. London cancer center is very good and I am sure you will be in good hands very soon. We are all here for support. Hang in there!
  • Hello Teacher20,

    I have just finished my treatment regime which included 7 rounds of chemo and debulking surgery which was done in April. There sure is lots to instigate fear, that is a natural reaction but here you will find so many people who can share their stories of treatment and survival, their good experiences will calm you fears.

    If the prospect of chemotherapy is one of your fears, I can tell you that I came through with very little side effects. It is not that bad, and there are now many medications available that will prevent the nausea often associated with chemo. My best advice to you at this point is to adopt the healthiest possible lifestyle to make sure you are strong and healthy as you go into chemo. For me that was a focus on nutrition, rest and exercise. 

    Good luck and bring you questions and concerns here. At this point, you do not know your diagnosis for the type and stage of cancer you have, the news may not be as bad as you fear, try not to "future worry".         
  • @BeamBlossom @CountryLiving @devanator Thank you for your encouraging comments. I truly appreciate you sharing your experience and suggestions.
  • Hi teacher20. I am also pretty new to this and like you remain terrified even though I was lucky enough to have surgery. Had my first iv therapy and had a port installed last Friday for my next treatment next week to further improve efficacy of targeted treatment.   Hugs to you.  This site and the people in it very welcoming 
  • Hi @Bille and @teacher20, A big welcome to both of you.  We've all been where each of you are right now in terms of learning that we have cancer and all the fears that knowledge brings with it; early treatment worries; fear of chemo, and so on.  I'm glad to hear that you were successful in advocating for yourself @teacher20 and I had to giggle when I saw your words, "the squeaky wheel gets the grease," because my Grandpa used to say that all the time, and it's very true! I had to advocate for myself as well and I believe it's very important for us to do so in our circumstances.  I've learned too that the fear subsides over time and with 'letting go' or with acceptance of both one's disease and of 'whatever may come' while we continue to advocate and care for ourselves and each other.  Some excellent resources for managing anxiety, fear, etc. and even dealing with having cancer, can be found at www.healthjourneys.com.  I wish you both well and hope you're managing to find some peace in each day.  Hugs from a fellow survivor (stage 3c high grade serrous carcinoma, July 2018)
  • My OC included treatment @London, my surgeon was Dr. Betrand, she is wonderful and I can highly recommend her. Treatment plan was mapped out, started chemo, had 3 infusions, surgery and then 3 more. 

    Hopefully things will go smoothly for you,  good luck!
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