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  • My oncologist told me to watch for symptoms (back ache, abdominal pain and/or bloating, but I didn't really have any.  I continued to have monthly bloodqork. CA125 bloodwork started showing the level creeping up and at that point she requested a CT scan. It showed an armpit lymph node was enlarged and from a biopsy of that ovarian cancer cells were identified. I started chemo again yesterday. My second set. 
  • @Elsie13 and @Fearless
    Thanks very much for the warm welcome and for sharing your stories with me.  It's nice to know we're not alone in this journey.
  • Can anyone tell me if your oncologist automatically has the CA125 blood work done when meeting with you on follow up appointments?  I completed my chemo therapy last August and see my oncologist every 4 months.  Saw her in December and again in April and both appts there were not tests done.  She just asked me how I was doing and if I felt any of the symptoms that would be concerning.  I just would feel better if the CA125 would be done each visit I go to.  
  • @mar_hopeful my GP does it for me every 3 months.   I felt I needed to know where my levels were,  my oncology team did it the first few appts, and they also did new scans at 6 months 
  • Thanks @NovaScotiagirl.  I think I will ask my GP to write me a CA125 requisition and get it done through the GP.

  • I get mine done with each appointment.  But, my oncologist did warn me that some factors can make it raise without it necessarily being cancer.  Mine just went up (it's out of range again now, but not by much!) and that because I also have crohn's and other autoimmune diseases that are currently flaring that could be the reason for the spike.  So, take it with a grain of salt until you're told otherwise.  But, for me generally, it's been a good indicator, and to be honest, I seem to worry less when I see it often.
  • jiselle16jiselle16 ✭✭
    @TealGalOntario thanks for sharing your story. I'm so sorry you are going through a reoccurrence. It sounds like you've been through a lot. Glad to hear you have some wonderful support from family and friends, and us teal sisters are hear to support you as well! Sending you lots of love  <3
  • jiselle16jiselle16 ✭✭
    @LynneA For detecting recurrences, my oncologist always based it on symptoms. I luckily haven't had an reoccurrence (I'm almost 6 years post diagnosis) so I don't have any first-hand knowledge. Keep in mind that CA-125 tests are good markers for some women, but not all. When I was diagnosed, my CA-125 level wasn't very high, so even after treatment it wasn't a good marker for me. However I must say that seeing those blood test results being lower than they were was somewhat reassuring, so if you need the blood work to ease your mind, I would ask your oncologist to continue with them.
  • Hi there. My name is Christine, I'm 54 and was diagnosed with Stage 4 High Grade Serrous Carcinoma, Jan 2021 with the BRCA2 gene mutation. Initially I did 4 rounds of chemo and also followed an alternative path with my oncologist monitoring me...I got into remission.

    Now, I'm experiencing a recurrence and so had a radical hysterecomy Apr. 2022 and am now following weekly chemotherapy treatments.  I began this journey full of determination, dedication and inspiration to be CEO over my own health, do extenstive research and creating my own path in partnership with my oncologist and naturopath. 

    With the recurrence, my emotions, mental state and faith took a huge huge hit.  The past few months have been tough emotionally but I feel that I am now turning a corner emotionally. I have an incredible healthcare team who I trust and a partner, friends and family who are offering so much love to me...but it is not the same as connecting with others who are walking and experiencing the same path as I am.

    I am hopeful once again, as I read your posts about the years that many of you are still living and thriving since your initial diagnosis.
  • ToughAsTealToughAsTeal ✭✭✭
    Hi 😀🌻 this is an amazing place to be reaching out to others for the hope we all share. I am 57, diagnosed just over 2 years ago. Also stage 4 HGS and BRCA 1/2 negative, like you.  I am in chemo with my first recurrence. While the chemo can hit me hard sometimes, I have plenty of better days with a few pokes of “not so great moments” that I am able to get through. Also like you with lots of support. So grateful. 
    Have you requested/received the By Your Side… and it’s follow up book Still by Your Side?  
    Also, if you are able, log into this site for the discussion group on Thursdays at 1pm (eastern). We chat about all sorts of things. 
    I am you found this site. 😀
  • Had a check up Thursday and my blood work was good!  But when I told my Dr. that I was pleased that my ca125 was normal he said it's like playing Russian roulette and I should ignore it because I will just feel bad if it goes up?  What??  I also felt bad when I was diagnosed but would rather know and get treatment.   He said they will not do anything even if it does go up.  Also told me they would wait until the symptoms from a recurrence are bad enough for me to want chemo again if it comes back.   I find him very patronizing and dismissive.  When I ask questions I get comments like "you must have a high IQ"  I think he is a great surgeon but I don't feel like I trust him.   He is at the London cancer clinic.   Anyone have other recommendations.
  • ToughAsTealToughAsTeal ✭✭✭
    @LynneA I am sorry to hear this experience you are having with the doctor. Is there an opportunity to have conversation to have your treatments overseen by another Gyne-oncologist there?  
    While I don’t care for his Russian Roulette comparison, there is some truth to weighing heavily on the number. I am going to tag @Fearless - Vol Mod.  This might be a great topic to post in Thursdays Ov-dialogue, or in its own category discussion?
     Leading up to my first recurrence, my CA125 was consistently rising. It was when I started to have symptoms plus the rising that I was scanned and confirmed recurrence. (My dr wanted to wait another month before scan. We asked for it to be done “now”.  There was almost a two week wait time if I recall to get the scan anyways… so can we just book it?! ) That was a year ago, and now, after a solid year of various chemos, CA125 is dropping. Woo hoo! But I know we still need to see what the scan shows, plus consider any symptoms I am feeling.   I understand the emotions that we tie to that number. Yes we need to self advocate at times.  
    And you ARE a smart cookie😀 
  • Thanks, I guess what I want is to know there is a plan for a recurrence and that we would discuss treatment options including surgery and chemo.  It is the getting brushed off that upsets me because I want to be part of the process and he has actually told me to just surrender to it.  I am also someone who needs to know the reasons behind the course of action and that is what I am not getting.  I am confused because he seems to get top reviews from everyone else.  He is a gyn surgical oncologist but not a medical oncologist - I don't know if that matters.  I am currently on Lynparza.  Just wondering if there are other Drs people would recommend.  I don't want to go from the frying pan to the fire....
  • ToughAsTealToughAsTeal ✭✭✭
    I am same! I want to know the plan. That was tough for me (still is), to know there is a plan (if this chemo doesn’t keep me stable). 
    I am in Southern Ontario, but not London. 
    As for great reviews… (and this is a running joke with my 19year old daughter)… alot of people think Drake is “all that”!  Me? Ya I don’t see it. Lol!  
    I hope another dr might be an option for you.  Maybe there is a gyne-oncologist at LCC? Would it be possible to have a consult with, vs a complete transfer of care?  That way you can keep you hand on that frying pan😀

  • Thanks, I also think I need to chat with my family doctor.  She may have some ideas, but she is new to the area.  Maybe I'll get her to ask around.  I also realize that I am projecting some of my emotions onto him, but I shouldn't come out of every appointment more stressed than I went in.  Especially when the test results are looking stable.  Need to focus on the bigger picture.  Appreciate being able to rant a bit.  Thanks
  • Hello @LynneA
    This journey we all take is tough and even more difficult to navigate at times. This can make many of us feel "unheard" as we deal with what has occurred, recurring and how we navigate the future of our health and bodies.
    Your Gyn Onc is not wrong in saying that weighing heavily on your CA 125 level and as your words put it "surrendering to it."  The levels can fluctuate in any one of us. I see you noted that you are on Lynparza which means they aren't ignoring it which is good.
    It is my understanding that monitoring for symptoms is one of the criteria for flagging recurrences along with other factors depending on our own unique situation. I say this as many of us can have similar situations but there are always slight "tweaks" that make them unique to each individual. 
    I am positive that should you be experiencing a recurrence your team would discuss and explain everything to you at that time. Including what the findings are  options and what they would recommend as to how to proceed. That would then be where you would be "in the driver's seat" to determine how you want to proceed. Some specialists don't have the greatest bedside manner but are great and on top of the information out there in their field. I am sorry that you feel that way about yours in particular. It is difficult to surrender to the process but sometimes that is all we have.
    It is also difficult for us (those going through the process) to wait whatever the period is for things to happen as we go through things. We have to keep in mind that there are others worse off and we have to trust that should any one of us need to take priority that we will bump someone else who may not be as severe.  This is hard to swallow but think about triage at Emerg and try to process it in the same way.
    Not sure if this helps you but it is food for thought. I wish you well as you navigate through it.
  • @ChristineBeverley welcome to OVdialogue and our community, although I would wish the reason for joining us were something other than this disease we all share.  I am truly sorry to hear your level of anxiety but do understand as most of us would.  As you said, we've all been there ourselves to some extent and know the fears that arise when this journey of ours hits a bumpy road.  

    The ladies who've already responded to you have made some excellent suggestions, especially sourcing the two OCC guides, By Your Side and Still By Your Side and the suggestion to join our weekly Thursday online chat.  For the latter you need only sign in as usual and the click on the topic TEAL THURSDAY to enter the chat. It's a great way to get some real-time feedback or just a great forum to vent, question, or even be distracted. And if you go to the topic TEAL BY THE MONTH you'll see the list of any events upcoming including the OCC Teal Teas.  These are Zoom platform chats held once a month.  One is for everyone, one for Young Survivors, generally those pre-menopausal, and one for survivors over 10 years.  And, of course, the OCC website is chock full of relevant information including survivor stories, videos on many topics of interest, and news on latest developments in new treatments and clinical trials.

    I do understand your disappointment in finding you've recurred.  Four years ago I was in your shoes.  I was diagnosed in early 2017 and after surgery and chemo thought I was NED and had beaten it.  I look back at my Facebook posts and boy was I overly optimistic because late in 2018 I started experiencing some signs of recurrence and in my regular check up my CA125 was beginning to rise sufficiently that there was cause to investigate further and that Christmas my "present" was notice that I was in recurrence.  What a blow that was but I was determined that if I had held the disease at bay for almost two years I could do it again. Fortunately I qualified for a unique trial of Lynparsa and that did keep my cancer stabilized for close to two years.  Then on to chemo when it began to progress again, and currently back in chemo for another progression.  In total I've had three recurrences and am now considered incurable, recurrent. But here I am having been told originally I probably would be looking at a maximum of 3 years if I recurred yet now in my 6th year of treatment., still feeling well and continuing to enjoy my life even though it's different from what I had expected it to be. 

    Treatment for you might still be curative, But if not, there is still hope to live a full and longer life than those silly statistics predict.  I"m a perfect example of the latter and there are many others like me in our community. 

    I am sorry to hear though there's an issue with your oncologist's "communication style". Clearly you're not connecting and that's not unusual.  My first oncologist was also my surgeon and he was amazing.  Then I had to transfer treatment closer to where I had just relocated and my second oncologist, also a surgeon was a bit "odd" although seemed capable.  Honestly had I not be transfered to a medical oncologist with a totally different style I would have asked for a second opinion and possibly a new doctor when the firsts recurrence as confirmed.  Nothing to do with her capability but more her style and mine didn't mesh.  So don't be hesitant to consider a change if you're not getting the right level of emotional support you feel you need....and this includes the way in which he responds to questions or throws out those comments that disturb you. On this site we do try to keep commenting on specific doctors names to a minimum.  Like your treatment, perception of a doctors' style and capability is personal.  But I would start with your GP, Explain the issue and elicit his/her help to navigate the possibility of a change.  That said, I do caution that the grass is not always greener but it is important that you feel your doctor is invested in you and communicates in ways that help you feel supported and informed and engaged in your treatment.

    I hope some of this helps. Do know that you're not alone. This community is over 1000 strong across the country and we're all here for you, every step of the way.  Reach out with questions, concerns, for advice or just to vent if that's what's needed.  And do keep us posted on your progress.  Hope to see you in one of our live online or zoom forums and wishing you the best as you traverse this journey full of bumps and blips.  It's not easy but with all the new research underway and all the new treatments and trials it's getting better.  In the meantime a huge virtual hug to you and to your family, 

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