Let's get started! Come and introduce yourself

1222324252628»

Comments

  • @mar_hopeful Welcome to the group.  Congratulations on completing your rounds of chemo!
    I too was diagnosed this year about the same time frame as yourself.  I have had both surgery and rounds of chemo like yourself.  Everything has been a whirlwind this year and if I have learned nothing else, it is to appreciate the now and live in the moment.  At times, this is very difficult to do and to realize we have no control over some aspects of it.
    I, too, go to see the surgeon/oncologist in Nov this year.  I did a CT scan with my local oncologist and where I received the bulk of my chemo to use only as a base line going forward.  The results came in and so far I am clear which is positive.  I thought Nov was far away but now that we are into Oct it does not seem that far off.  I believe, like myself, you will find this group helpful.  If you feel anything, question anything or just want to vent, this is a great place to do it.  Not that there are answers for anything but it is great to talk with peers who have "walked the walk".  Also, consult with your team should you feel/experience anything prior to your appt.  They will still be there for you.  I wish you all the best at your follow up and hope to hear your experiences along the way.


  • HI @mar_hopeful Welcome to our community and so glad you found us.  

    You're not alone wishing your follow-up, once primary treatment is over,  could be sooner and more frequent. Rule of thumb but dependent on the doctor and your particular circumstances is usually check ups every 3 or 4 months in the first year following end of chemo. That's not to say you wait if you have persistent symptoms that might be worrisome.  

    I can say though, that in my years of talking to other survivors and using myself as an example, anxiety post treatment is probably the most frequent issue we all face.  Think about it this way....we all go through a whirlwind 6 or so months with our lives being managed by our cancer care teams. Regular contact, follow ups, blood work, scans and the all of a sudden  treatment ends and we feel disconnected to our life line.  Add to that, there is lots of guidance through treatment, whether primary or for recurrence if that should happen, but little preparation and support for that post treatment recovery/surveillance period and that can be scary.  So, as I said, you're not alone.  

    If your cancer centre has a social work department, I urge you to ask your oncology team for a referral. Having some one to talk to about your concerns and anxieties, who can help you help your family manage, and help keep things balanced and in perspective can be enormously helpful.  And you don't have to wait for your next oncology appointment to ask for the referral. You can do that now.

    And don't try to rush your recovery.  If you're tired, rest. If you feel unusual aches or pains, reach out to your cancer care team if they persist.  Just think about what your body has endured this past year.  Recovery will take time and your patience and the patience of those around you.  

    Use the Ovarian Cancer Canada website as a source of information to help answer questions and concerns that arise.  Do attend the November Symposium.  The agenda and registration links should be out shortly and I usually post them on our OVdialogue home page as a Discussion Topic when available.  

    Please join our weekly online chat...Teal Thursdays. It's at 1pm EDT and all you need do is sign in to OVdialogue and click on the Discussion Topic: Teal Thursday...... and you can immediately begin real time communication with our group. Some days it's just me and one other member....but usually we have at least a dozen on line.  Also check out the Ovarian Cancer Canada Events page https://ovariancanada.org/Events/Find-Local-Events  The Teal Teas might be of interest to you.  They run three a month, one for young survivors (usually those under 50ish), one general group and the third is just for those over years in remission.  Those are done on zoom.  

    Whatever, do stay connected to us. We're here for you...to share stories, answer questions that we can, celebrate successes, and just lend an ear when you feel the need to reach out and just share your feelings.  It does get better over time though.
    <3   



  • kastoyleskastoyles ✭✭✭
    @mar_hopeful - oh boy, can I ever relate to your feelings! I can also tell you that it does get easier. When you finish treatment, all of a sudden you're on your own. It will be a few months until your next appointment when you're used to seeing the oncologist every three weeks. I spent many sleepless nights worrying about recurrence, getting cancer in another part of my body and wondering what the future held for me and my family. But the further away I got from the last chemo treatment, the more my mental state calmed down, took a deep breath and got on with life. I'll be having my last visit with the oncologist on November 3. I may have a little separation anxiety after that appointment..he's retiring in December.
    Come here if you're feeling down, or if you're feeling great! Share your thoughts and concerns with the other ladies in the group. Chances are very good that one or more of us have been there and can offer a tidbit of advice, or learn something from you.
    Enjoy each day, get stronger each day!
  • I share the concerns and anxiety mentioned here about life after treatment.   I finished chemo 2 weeks ago and then found out that the pathology was BRCA1 positive.   That has pushed my anxiety even higher and I am not happy about having to go on meds.  I just wanted to be done.   

    I will be seeing my oncologist next week which is good as I have a long list of questions.   I also want to talk to a breast cancer specialist as I don't know if I should consider preventative surgery.   Just seems overwhelming and scary but I am trying to celebrate finishing chemo and looking forward to weddings for 2 of our sons this fall.   So grateful for this group and hearing that my feelings are normal.   
  • @LynneA I'm so sorry the pathology results have just added to any anxiety for you. We all wish that once primary treatment is complete we're done...and can just move ahead into recovery and rebuilding our lives.  Even for those without the extra burden that's been thrown your way, that doesn't ever seem to be the case. But like kastoyles said, for them it gets better over time...the anxiety lessens, and is replaced by normal day to day concerns.

    You're doing the right thing by arming yourself with questions for your oncologist to address at your next appointment and for wanting to take the steps to explore preventative measures.  You may well come out of that meeting feeling much more in control as you're armed with the facts that will help inform any decisions you may need to make.

    Our group is here for you and I encourage you to continue to reach out and share updates on your status.  Hopefully your next oncology meeting will be a successful one and put to rest some the anxiety you're feeling right now. Until then though, try your best to just focus on those two wonderful upcoming events this fall. Nothing more exciting and uplifting than a wedding and wow....two of them to look forward to.  

    All the best moving forward.....
     <3 
  • Hello everyone,

    My name is Jaynevie. I'm a 27 y/o ICU nurse who has been recently diagnosed with ovarian cancer (specifically an ovarian germ cell tumour) in September 2021. Being a nurse and now a patient has been an enlightening and humbling experience. I'm to receive four rounds of chemo then plan for surgery. I just finished my third cycle (yay!) and preparing for my fourth. It has been a rollcoaster of emotions but I am trying my best to stay positive, actively looking for support. I am lucky to have found this website and am excited to start meeting you all and hearing your stories. I hope your days be filled with love and light! 
  • @jaynevie_I'm so sorry to hear of your diagnosis and hope all will be well.  It's a terrifying and unknown future for all of us but you have some huge benefits on your side: your age, knowledge and beautiful attitude. I'm sure they'll be put to good use in the future.  Congrats on being halfway through chemo, you'll be ringing the bell very soon!  There's a younger group on this site, if you search for jiselle16 she will be able to help you navigate through to the younger members.
    I was diagnosed at stage 3c and am happy to tell you that I've had no evidence of disease for a year so far and hope for many more to come.  There are so many inspiring stories on this website and the support is amazing from all age groups and stages.  Big hugs from Port Credit, Ontario.
  • @jaynevie_ I am sorry to hear of your diagnosis as well.  You have found a wonderful support group,  Your knowledge base will assist you as you go forward and this group can be great for filling in some areas that you may have questions or concerns around.  Glad to hear you are almost finished your first rounds of chemo....it is definitely a journey for sure.  It has been my experience that emotions will wane and surface throughout you care....know we are all here for you should you need it.  You have an amazing outlook. I was diagnosed same as Annie at Stage 3C with no symptoms present and was only found when I had a GI bleed.  I had major surgery in March of this year and underwent 6 rounds of chemo that I completed in August.  Now I am navigating the NED (like Annie) and attempting to discover what my body norm is going forward.  Positive thoughts and hugs to you as you complete your journey.
  • @jaynevie_
    Welcome to our community. I am so sorry to hear of your diagnosis, especially at such a young age. But Germ Cell OVC is very rare but most prevalent under age 30.  I expect your future is now dependent on surgery and an assessment of stage.  Let's hope for good news and the cancer has been caught early and is contained. But there's nothing to compare to the emotional toll those first words...cancer...can elicit.  As you read stories here you'll see the roller coaster we all go through.  What carries us through?  Personal resilience, hope, great people supporting you, and fortunately for us in Canada, trust and faith in our incredibly talented and committed medical specialists.  

    A few suggestions to you as you begin to reach out to our community and as your journey continues...some of which you may already have done but always worth a reminder. 

    Use the search bar in the upper right of your screen to access historical conversations on any topic of interest.  There may have been some on the topic of germ cell OVC specifically at some point.  Every Thursday at 1pm ET I host an online real time chat that I'd love to have you join when it suits your needs. It's great to get immediate feedback...and since topics are often not even cancer related it can be a great opportunity to just put worries aside for an hour with a group who can be lots of fun to chat with.  To access the chat, just sign into Ovdialogue as usual and then click on the discussion topic TEAL THURSDAY.....

    Monthly OCC runs virtual support groups, called Teal Teas, using the Zoom platform.  There are three, one for our general community, one for 10 year+ survivors and one specifically for young survivors like yourself.  These are fairly new this year and becoming very valued.  The last one this calendar year is this coming November 24 at 6pm ET. You must register to participate. For more information on the Teal Tea and to register go to: 
    https://ovariancanada.org/Events/Find-Local-Events/2021/November/Teal-Tea-November-24-2021
    Also one of our OVd support team, @jiselle16, is a young survivor herself and has been very active in the Teal Teas and developing a young survivor community...many of your issues quite different from those of us who are older. I've copied her to flag her.  

     OCC, and its website of course (https://ovariancanada.org ), is an extremely valuable resource that I suggest everyone familiarize themselves with. Lots of information , stories, resources to access, and videos and programs to support our needs.   Especially valuable to the newly diagnosed is the booklet By Your Side that can be ordered soft or hard copy. It's a wonderful tool to help guide you through diagnosis and primary treatment.  You can order the booklet at: https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources

    Please keep us posted on your progress. Reach out any time you have questions, concerns, or just need to talk. We're here and no one in our community travels this journey alone.  

    Huge hugs for now....
     <3 

  • @jaynevie_ - Welcome to OVDialogue - you have definitely found the place for support. I'm so sorry to hear about your diagnosis and can certainly relate to the shock at hearing those words. I was diagnosed in January 2016 with Stage 1C Clear Cell after a hysterectomy, and the treatment of choice was six rounds of chemo. I just passed my five year anniversary NED (no evidence of disease).
    Take advantage of all that OVDialogue and OCC have to offer. There is a wealth of knowledge and experience available for you and, if need be, this is a great place to rant and get those feelings of frustration out. We've all been there!  Stay strong!

  • @Annie1950 @Strongwoman @Fearless - Vol Mod @kastoyles
    Thank you wonderful and inspiring women for the warm welcome! I'm so happy to hear that despite the stages you all were diagnosed you now have NED. You are all so powerful and resilient for going through what you have and sharing your stories with me. Your strength is truly something to celebrate.

    Unfortunately, at the beginning I was misdiagnosed with a dermoid cyst that was to be surgically removed in Nov. Due to the misdiagnosis, my tumour had grown >20cm at a very fast rate and had to admit myself into the ER because part of my right lung had collapsed from a pleural effusion caused by the cancer. I had massive amounts of fluid in my abdominal area as well. But lucky for me, I was admitted into Princess Margaret Cancer Centre and followed by the best specialists who put me on a 4-cycle BEP treatment immediately. I'm already breathing much easier, and no more access fluid! Surgery and assessment of stage is planned for January, based on how I tolerate chemo. Definitely a scary, unexpected time in my life right now, but once again I am staying strong and keeping positive!! 

    I'm currently navigating through the ovariancanda.org website to familiarize myself and learning how to reply/create discussions. There are indeed many stories and information it's amazing to have all on one platform. 

    Thank you so much for all your advice and providing resources. I've registered up for the upcoming Teal Tea and looking forward to meeting more wonderfully strong women. Hugs and positivity for everyone from Toronto, ON <3 
  • @jaynevie_Hello,  I was diagnosed in Feb 2020 with high grade serious OC.  I had large amounts of fluid in my abdominal cavity.  First tap drew off 3.5 litres 2nd peritoneal tap they took almost 6 litres.  I had 4 chemo, surgery then 2 more chemo sessions.  I celebrated 1 yr in Remission on July 23rd.  Please stay focused and positive.  You have found a wonderful group who understand and empathize with you.  They also support each other.  Have faith, be strong and don't forget to love yourself first. It is a journey. 
  • @NovaScotiagirl
    So lovely to hear from you again and so happy to hear how well you're doing.  Congratulations on your 1 year of remission.

    Stay well.....
     <3 
  • Thank you fearless.  I explore this site and my book regularly.   
Sign In or Register to comment.