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Cheryllunenburg

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. 

TealGalOntario

@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.

mar_hopeful

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.  

NovaScotiagirl

@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 

mar_hopeful

Thanks @NovaScotiagirl.  I think I will ask my GP to write me a CA125 requisition and get it done through the GP.

missvixx

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.

jiselle16

@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 

jiselle16

@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.

ChristineBeverley

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.

ToughAsTeal

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. 😀
Laura

LynneA

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.

ToughAsTeal

@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😀 

LynneA

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....

ToughAsTeal

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😀

LynneA

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

Strongwoman

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.

Fearless

@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, 
  

jiselle16

@ChristineBeverley So glad you found OVDialogue! I am so sorry to hear about your reoccurence. I know there are many ladies on here experiencing the same, so I hope you find some commonalities in their stories. As well, many of us (myself included) are many years out of treatments and doing well! Please know you are never alone in the waves of emotions. It's a tough journey for sure, and just take it one day at a time. If you need support, you'll find it here! Also the "Teal Thursday" live chats are also a great way to get some live support and feedback. Ovarian Cancer Canada also hosts "Teal Teas" once a month where you can chat to other survivors on Zoom. You can find more information here: https://ovariancanada.org/Events/Find-Local-Events/2022/August/Teal-Tea-August-16-2022

Shortie

Hi hi I’m new here.   Last year I started to lose weight, was in a lot of pain, slept all the time.  I went to a walk in clinic because I like many cannot get a permanent doctor!   I thought it was my colitis - he was amazing!!!   He immediately told me it was not and I had to get some tests done to be seen at our cancer centre.   Stood in line for 3 hours for bloodwork, urine test, ECG, FIT test,  then three x-rays, 3 ultrasounds, and CT scan.  Ovarian cancer that has spread.   Then biopsy in hospital.   
Started Chemotherapy and had three rounds, then hysterectomy, appendectomy, omnectomy, dissected bowel, biopsy of bladder and lymph nodes removed.   Then 3 more rounds of chemo.   They wanted to do 3 more rounds but my body protested.  

During this my sister was tested and she had ovarian cancer as well -  she battled breast cancer a few years ago!   She had a hysterectomy and omnectomy as well but because it was fully contained she had no chemotherapy.

Genetic testing showed mutated BRCA1 gene so now I was put on Olaparib.  The cancer is still in my bowel, bladder and lung (and who knows where else!)

Very scary stuff!   I was the only caregiver to my husband for over 7 years while he slowly died of kidney and heart failure.  three months later Covid shut down the world then in 2021 diagnosed.   My sister and family live 5 hours away and I rely on sister-in-law and cousin to help me with getting to appointments and housework.  

I am praying this drug will give me a few more years but Im afraid it will not or will make me feel just as bad as chemo.  Has anyone gone past two years on the drug and how long after did the cancer come back?

Thanks for letting me blurt all this out!  This is my first time on a support community!  

ToughAsTeal

@Shortie You have had a lot to handle over the years and am glad you have found us. Many amazing Teal Sisters here🌻 By now, do you copies of “By Your Side” and “Still by Your Side?” (They are free).  Does your cancer center have access/referrals to resources where you live to help with support?  Kudos to the Walk in dr who recognized it might be more, especially when many family doctors still dismiss it as signs of IBS, or age, lifestyle etc 

Shortie

@ToughasTeal. No I do not have copies of those.  I’m in Calgary and I’m sure there are resources here but they seem very vague.  What I mean is they asked if I wanted to see someone to discuss things but don’t give me anything to read.  they explain the cancer to me and the treatments but nothing on support really.  I guess really it’s part my fault for not asking!  
I am very grateful to the Dr who helped me- it will not save my life but hopefully saved my sister.  

NovaScotiagirl

@Shortie. There are so many new advances in ovarian cancer.   I am sending you very positive thoughts.  I don't carry the BRCA 1 or 2 gene so I'm not familiar with this drug.  
You have found a wonderful resource here. Please know we all are fighting alongside of you.  Please keep faith and hope close its amazing what we can do.!

LynneA

I have been on Lynparza for 7 months.   Just got an invite to join Lynparza and me.  It's a great group to ask questions about this med.

ToughAsTeal

@Shortie crossing my fingers this link will work for you.  I would recommend requesting both books, even though the “still by your side” is intended for recurrence. Can always tuck it away somewhere! 

Ok links won’t paste… go into ovarian cancer Canada website… and from the menu Livinng with ovarian cancer —> find support 

ToughAsTeal

@Shortie I am in souther Ontario. I started off at a major cancer center, and the support (phone counselling) wasn’t a good fit with me. I was also offered dietician counselling which was good. This was all by phone or emails because of COVID.  A few months ago I switched my treatment to the local satellite chemo unit (I could walk up the block to be there!). I have a new phone counsellor (who I am connecting with I think because I am guessing she is closer to my age, I am 57).  They also brought in the dietician to go ver new restrictions I have, and I have no-weekly nurse home visit and a local palliative doctor.  Ask ask and ask again questions to your oncology team. I have learned the importance of self-advocacy (and still be nice how I ask lol) because my nature has always been to not speak up.   I am also BRCA1-2 negative, so never on Olaparib.  I was taking Niraparib (Zejula) as a maintenance treatment when I was NED (no evidence of disease) for about 8 months. 

RobinD

I am BRCA2 positive and have been on olaparib (Lynparza) for over a year. I had full hysterectomy and 6 rounds of chemo. I do believe the the drug is extending my life and pushing back recurrence. The biggest drawback is fatigue...but I'm doing OK. Not sure what will happen after the 2 year mark.

Shortie

thank you everyone for your suggestions- it’s uplifting to talk with people who have experienced what I am!!!  I will check out those books 👍

Strongwoman

@Shortie
  Welcome to the group and I am sorry to hear of your journey that has brought you to the group. It is great to hear that you were listened to which ultimately led to your diagnosis.  
  I am not BRCA positive but try typing in either "Lynparza" or "Olaparib" or "BRCA 1 positive" in the search bar to see what other ladies have said about any of those topics.
 I wanted to address your comment on house cleaning and rides to appts. Maybe mention your challenges with those to your team to see if there are any resources available to you to assist you with this. 
  Keep us posted as you go along.  There are also weekly chats you can tap into through the group here as well.

Fearless

@shortie welcome to our community and so glad you found us.  You sure have been on a roller coaster the past few years between your husband, now your own diagnosis and treatment and then your sister's situation.

Do ask your cancer care team for a referral to the cancer centre social work department.  The social workers are an amazing resource for everything from identifying support to help you where you need help to just being there to listen and help keep you balanced and focused.  I've been fighting this disease for almost six years now and one of the best things I did for myself was to engage a social worker.  

Also lean in to the Ovarian Cancer Canada website (ovariancanada.org) for the wealth of information on this disease. The site is full of peer stories, information on the most current treatments and trials, videos on various subjects.  Every Thursday at 1pm ET we hold an online live chat for our members here.  You need only sign in to the site and then click on the Discussion topic TEAL THURSDAY (it's usually the first one in the list of topics) to enter the chat.  And towards the end of each month OCC runs Teal Teas. They are live sessions for members to engage on the zoom platform. The schedule for that and links to register can be found in the OCC site under Local Events.  

Finally I was on Olaparib myself for almost two years. My use was in a clinical trial setting for patients with the HRD mutation, not BRCA.  It is necessary to say we can't compare responses to treatments as each of us responds differently but for me, the Olaparib actually shrunk my tumours considerably and kept them stable at that level for almost two years.  Sad to say it lost its effectiveness for me eventually but it did keep me out of chemo for that period of time and here I am today, still recurrent but having my life span extended from the original prognosis of three years to be in my sixth year of treatment and feeling darn good still.  And yes there are women who have been on Olaparib for well over two years and continuing.  So yes, if it works for you, it can extend your life considerably and allow you to continue to live well with the disease. 

Good luck to you.  We're all here in your corner.  
  

jiselle16

@Shortie Glad you found OVDialogue and have reached out! Lots of good resources and advice have already been mentioned by others. Fearless mentioned the Teal Teas - I'd highly recommend these monthly Zoom calls as they are a good way to get support and be in the company of other teal sisters. The next ones are happening on August 16 (for everyone) and August 17 (geared towards young people with OC). You can find more information and register here: https://ovariancanada.org/Events/Find-Local-Events. 

Thinking of you!