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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.
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.
I am you found this site. 😀
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.
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.
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,
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!
I am very grateful to the Dr who helped me- it will not save my life but hopefully saved my sister.
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.!
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.
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.
Thinking of you!