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Recurrence Number 2
First recurrence Sept 2020
On Lynparza from March 2021 to now
CA125 levels increased last 3 routine checks
CT scan scheduled
Results -- cancer present on liver and vaginal cuff
Chemotherapy to start shortly -- very disappointed & scared
Comments
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I am so sorry to hear this news for you. I
have only been dealing with ovarian cancer for 7 months, but totally understand feeling disappointed and scared. Have an appointment next week for some anti-anxiety medication. Have you considered that route?0 -
@Camper62 You hit the nail on the head "very disappointed & scared". I recall feeling that way when I found out I had recurred. My question is to you, "How can we help support you along your journey and what do you need?"
Dr. Google will not be your friend right now and will only cause you to spiral with the negative emotions/thoughts. I will assume you are HGSC? Have you asked yourself about "what is quality of life mean to me?" and "what am I willing to try and/or not try going forward"? We may feel like we don't have choices but we do, we can choose us and how we feel during it all. I spoke extensively with both my Palliative doctor and a newer Gyne Onc when wondering whether to follow through with a double nephrostomy was for me or not. After much thought and discussion, I decided not to. Mostly to it was the fact that all my bloodwork was coming back 'normal' for kidney function and we all know that we can live with one kidney. So, we monitor now, waiting for the time we may have to intervene and when we do, it will only be one sided as the right kidney is barely functioning in my case.
So, vent, cry whatever you need to do right now, here in our group and let us support you through this difficult time. It is full of emotions both positive and negative, mixed in with thoughts that can take you down a 'rabbit hole' and the physical symptoms you are going through as well. Tell us how we can support you.....
We are here when you are ready........
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@Strongwoman thank you for replying.
It's so difficult telling family and friends. My personality dictates positivity but deep down, I'm scared.
Support? I don't even know what to ask for. Someone like yourself checking in, keeping tabs on me/for me.
Thanks for listening. Jane janefinbow@gmail.com0 -
Your welcome @Camper62 I enjoy being able to do this and if it helps someone along the way, well I am over the 🌙 moon.
What do you think is holding you back from telling family/friends? Don't worry about what it sounds like, be honest to yourself and see what comes to the surface. For me, I hold back at times because I feel/know they will ask questions to which I don't have answers for yet. This then gets anxieties up and doesn't help me. So, I have learned to wait until I have some more answers or pieces of the puzzle and then we have a discussion. Initially, I tell my hubby, a good friend, my boys and my Mom. Then after we have chatted I will slowly widen the circle. Since recurring, I am learning to take care of my needs first and then so on. This journey is difficult. It's why this forum exists so that we have a safe space to share, care, vent, cry, laugh...whatever one is feeling so one can be true to oneself. To be able to receive the support one needs to help one carry on and find the strength from us to help one along the way. We all need it in some form and some more than others depending on where ones journey takes them.
Support.....perhaps someone to listen? To tell you that these feelings are normal. Perhaps to know it's OK and that you have support. Perhaps to let your true feelings out so that you can heal and get through this or to get some additional support along the way. To know it's OK not to be ok. Whatever it is, you have done the first step and put it out there. That is the hardest step and you accomplished it!
I will definitely check in with you and am here for whatever it is you need. If I can't help, I will find resources for you and pass them along or connect you with someone who can.
You are not alone.....we are all here to walk along beside you. Now if you are crying now, grab some kleenex, let it out, blow it all away, take a deep breath and BREATHE. Hugs to you.....now get some rest because tomorrow is a new day. We take one day at a time and let the process be the process.
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@Strongwoman Thank you.
I am going to join on Teal Thursday0 -
@Camper62 Sounds good.
Look forward to having you join.0 -
@Camper62 Good Morning. It has been a little bit and thought I would check in. Last time you posted, you were experiencing a lot of emotions and some news of a recurrence. Have any updates? How are you doing in general and emotionally? I have been wondering how you are doing and would love to hear an update. Thinking of you and hope we hear from you soon.
Take care 1 -
Since sending you a message in January, I have gotten through 3 treatments, 3 more to go. I struggle with my emotions the most. Not just the obvious of going through chemo and all that comes with it but the loneliness of it all. I've yet to meet someone else living with ovarian cancer as I have been for 4 years. Ovarian cancer seems to bring with it more unknowns than some cancers. We know it will recur - this is my second recurrence and my oncologist is honest in saying it will recur again. How often can one put their body through treatment? Chemotherapy is accumulative, I have had 15 rounds! Is it OK to say no to more? 18 seems like enough. It seems like wishing ones life away - just 3 more chemo treatments but 9 more weeks. Then wait until hair grows back, energy levels to return only to wait for another recurrence. How long will I wait? A year? Two maybe? It's one thing to stay positive and believe you can get through it, but to prepare yourself for yet another time? It's waiting for the other shoe to drop - again! Support people don't know there will be a next time for those of us with ovarian cancer. I carry on one day at a time the best I know how. Participating in cancer support groups doesn't seem to be helping me this time around. I seem too experienced at it all, being on diagnosis #3 in less than 5 years beats everyone I've met. So listening to others tell me "you've got this" just isn't cutting it.
Thank you for reading this. I may sound totally off the wall, self-centered, cynical and maybe critical of those around me - forgive me.
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@Camper62 You have brought forth some very good points for discussion and I hope my post will help you on your own journey.
This is pulled from your post:
Ovarian cancer seems to bring with it more unknowns than some cancers. We know it will recur - this is my second recurrence and my oncologist is honest in saying it will recur again. How often can one put their body through treatment? Chemotherapy is accumulative, I have had 15 rounds! Is it OK to say no to more? 18 seems like enough. It seems like wishing ones life away - just 3 more chemo treatments but 9 more weeks. Then wait until hair grows back, energy levels to return only to wait for another recurrence. How long will I wait? A year? Two maybe?
This sounds like you are conflicted/grappling with quality versus quantity. To me, it sounds like you may be wanting more "quality of life" than quantity. To be honest, it is what I want on my own journey. You have the ability to say "when". If you feel you don't want anymore treatment right now then stop. Go live and do things you want to do. Only you can decide this. You may have to dig deep to figure out what it is you really want and maybe not so deep either. This is your decision. It does not mean you are "giving up" and I understand that the "you got this" isn't cutting it anymore. I don't accept that saying either. What I have, personally, is the ability to navigate my own journey. For myself, if any treatment option reduces the time I am spending with others or how I feel in general, then I don't want it. I am good with how I feel (mostly) and how I spend my days. If something might offer a little blip in that, well that is okay for me. I will give you a 'for example'. I was switched from my Letrozole maintenance drug to Tamoxifen. The Tamoxifen after a week was making me feel terrible. I discussed how I was feeling with my pharmacist and then my team. Even before my team got back to me, I had decided I would go off it and return to the Letrozole. Feeling worse was not quality to me. It was reducing my time with my family and friends on top of not feeling well in general. That is not for me. I know a time will come that those things will be taken from me without my wanting them to be and that is beyond my control. For now, I can control what that looks like and is my 'quality'. Does that make sense? I feel that you may need to have discussions with yourself, your inner circle (maybe) and your team as to what that looks like for you and how they can all help you achieve that. This is YOUR journey.
I found that reading that book "Hope for the Best and Plan for the Rest" re-iterated all that for me. It talks about all of it in the book, how to talk to different ones about it and above all your health care team. They also have a podcast entitled "The Waiting Room" that touches on all of the stuff in the book. Maybe you might find your way in some of that. For me, after finding out I recurred, I delved into many books on death and dying. Not because I thought that was imminent but because I wanted to steer my own boat and what that looked like for me. I wanted to know what "others" thought they missed out on and how to make sure I was being heard despite treatment being ongoing. I have turned down a pro-active surgery on my kidneys after much consideration, confliction, discussions and all of that was not easy. As my palliative doctor said at the time and is how I look at things now, "If you are fence sitting, then the answer is 'no'. For if you were not fence sitting the answer would be there without hesitation." Now when I am faced with decisions, I come back to that and 'sit in it' for a bit before I make a decision. No one knows what lies ahead but you can ask the questions needed to arrive at your own answer. Ask your team what it looks like if you stop for a month, two, longer. What will happen or do they even know? How do you feel about stopping treatment? Is there another health care provider that you can see or look into a trial? Do you want to? When I inquired about a trial in PMH and saw the physician there, it was their recommendation that has led me to the path I am on currently. They recommended looking into pro-active surgery for my bowels, change of meds, etc. This led me to seeing the general surgeon yesterday for a consult. I am now looking at some more diagnostics to determine if we can figure the 'why' behind my obstructions and if there is or is not anything we can do about it. So currently I am 'sitting in the dark' and hope by the end of it that I will be 'in the know' with the information we get from it all. Even if they come back and tell me there is nothing they can do, well, I still get to decide what that path looks like and have discussions around it all. For me, that is empowering. Will I go through a ton of emotions with it? Yes, I sure will but that is okay. Does any of this help you or make sense? I hope it does. If you want to talk/discuss further, we can here on the open forum or in a private chat. Whatever you need, we will do. If you want to chat on the phone, we can do that too. You let me know what you need and I will find the resources or knowledge you require in order to make the decisions you need to. I 'get it' and will be here for you whenever you are ready.
Hope is what we all need and I sincerely, hope you received some today.
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@Strongwoman the most insightful, empathetic response to my email - thank you. Sitting on this fence of indecision and unknowns is clearly wearing me down. I have a telephone appointment with my oncologist early next week. I intend to do some soul searching and be prepared to ask the tough questions. I will have had a 5 week break from chemo by then. (My 4th treatment was pushed back due to my having an anaphylactic response to carboplatin.) In the meantime, I will order the book you suggested and enjoy my life as it is. Again, thank you and I'll be in touch soon.1
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Your welcome @Camper62
I am happy to hear that you found something that resonated and was meaningful for you in that post. I feel that you will enjoy the book and everything in it.
It is hard to 'face the music' at times but it is only by asking these tough questions that we can make informed decisions and move forward. Emotions will come with it all and that is okay too. Give yourself space for it all. Be patient and make room for some time to adjust to whatever the outcomes are and where you want to head with it next. Breathe. Lean on your supports. Vent here if you need to. You will get through this. Fence sitting is exhausting. You will have your answers soon enough. 1 -
Hello @Strongwoman -- just a bit of an update. My oncologist was genuinely concerned at my thoughts of not completing this round of chemo. I've trusted her judgment for almost 5 years, so I have now had treatment 4 of 6. She switched me to cisplatin along with the toxal. A 10 hour day! I've been quite wiped out - should be better tomorrow.
She was honest in telling me that without anything further, my prognosis is 2 years. I'm not quite ready.
I have started reading the book you suggested and will try having more open conversations with my family and support people. I hope to connect with a social worker from the palliative team as well.
Thanking you, Jane
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@Camper62 I bet you would be wiped out after that! How do you truly feel after speaking with her regarding the chemo and switch to treatment? For there lies the real answer or things to work through for yourself. They are all hard decisions we face.
I was informed that I would be a 1 1/2 yrs and I have surpassed that now. I decided to enjoy, do things I want to do and while living in the moment, preparing for down the road at the same time. That is where the Legacy work comes in. I am thankful I started it a long time ago as it can be time consuming. You will get there when you are ready.
Glad you started reading the book. I found it very helpful and reinforced most of what I do and how I make my decisions for a very long time. It is well written and you will move through the book as you are ready to do so. Just a for thought thing: I found that I was ready to have discussions but the family was not. I had to let them do their process while I continued on my path. It is a grieving process and however they see fit to get through it is for them to figure out either now or later. Mine are now starting to "catch up" given my news last week. You are already planning as you are seeking help from your team where you think you need it. That is important. You are doing great. One day at a time and how you want it to be. You will get there. Be patient and kind to yourself. 💕
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I've been reading these discussions and find they resonate with me. Confirmation of my "path" and my decisions. I've always known I have much control over the process even though I have no control over the disease. I'm known to be very positive but still very much aware of the outcome. Some days I'm down but that's ok! At diagnosis I was given 2 years, maybe 2.5. That was January 2019. My Oncologist told me that when we first met she really didn't think she could help me. My first recurrence was confirmed Nov 1, 2022. A second surgery in Jan 2023 to remove my spleen. Now my 2nd recurrence is here. Need find out where and next steps after my CTs on the 24th.
I can't control the outcome but I can control my process and my outlook. Right now I want to enjoy summer outdoors with my favorite family members. I absolutely love the stinking hot summer days. We still practice covid protocols at my house as I do not want to catch a cold or the flu. I've worked too hard to stay alive and won't take risks that are avoidable.
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@danidelbiondo Hello! I am happy to hear that the info resonated with you when you read it. As mentioned above, they also have a podcast called "The Waiting Room" that touches on parts of the book and more if you wanted to listen to them. Understandable if you don't as well as sometimes we can be "full" and want to block out anything but the present and day to day.
You have said it well that is quite okay to not be okay some days. I, too, am still pretty strict about anyone being sick and coming over. I would much rather postpone a visit than risk getting sick. I think your summer plan is divine AND something to look forward to. Any specific summer plans you want to do this year? The stinking hot summer days eh? I used to like them but these days I am either cold or too hot……thanks surgically induced menopause! 😉
I, too, am past the time I was originally told and am thankful every day that I am. I am sorry to hear that you are facing another recurrence. I find the waiting the hardest part of it all. So, for you, scan on the 24th of this month, then an appt to discuss the results and find out next steps. Is that correct?
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you have spoke so well. It lifted me up! I have only been on Olaparib for month and a half. So I think I will stay clear of google it doesn’t always help at all.
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Your welcome @Park Anytime. Any questions, hesitations etc. reach out and ask. If I don't have an answer, one of the other lady's will. It takes a community remember? That is what you have here, anytime you need. 💕
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