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@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.
@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!1
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.0
@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.....
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!1
@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.0
@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.0
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:
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....
@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!0
@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
@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.
So lovely to hear from you again and so happy to hear how well you're doing. Congratulations on your 1 year of remission.
Thank you fearless. I explore this site and my book regularly.0
I'm 33 year woman with personal history of breast and ovarian cancer. For ovarian cancer, one of my ovary and fallopian tube was removed. I've a new cyst on other side of my ovary. My gyne oncologist suggested to remove another ovary that will put me into menopause. Because of breast cancer Hormone replacement therapy may not be an option for me. I want to know what are the side effects of surgical menopause without Hormone replacement therapy. I'm going through Google search and it's giving me nightmares.0
I don't have any answers for you, but wanted you to know that I'm in surgical menopause currently and so far, so good.
I'm also debating what I'll be doing in the next few weeks (my ovaries and all that jazz were just removed a few weeks ago)
I'm meeting my doc team next week and will be asking all these questions so I'll fill you in on what we do for me.
Thank you so much for the response. I'm glad that you're doing good. Best wishes for your recovery.
May I know if you felt any immediate side effects?0
The effects so far are pretty immediate, yes. I had my first hot flash in the hospital on the second day.
But for me they're not that bad. I get hit with them about five times per day. I notice them in the back of my head first and then hear over my body. I haven't had anything else yet though that I've noticed.0
Thank you for sharing this.
Keep me posted about next steps.
Happy to contribute! You take care too!0
@Kohal Welcome to our community and I"m so sorry to hear of your challenges, especially at your age. We are developing a significant community of "Young Survivors" so hopefully some them will have stories to share that might be helpful. I see missvixx has already been in touch. This group, and your gynecologist should be leveraged as the best resources for guidance. Google, I know from my own experiences, can be very scary and often the information is not medically supported. So I caution on that front.
We have a forum called Teal Teas once per month where Teal Sisters gather on Zoom to share experiences and support each other. One of them is specifically dedicated to Young Survivors such as yourself. There are no Teal Teas this month because of the holidays but I expect a new schedule to pick up in January. As soon as it becomes available I will post an update under the Teal Tea discussion topic on OVdialogue. Participation is by registration and the sessions are usually held the last week of each month.
You might also want to check for any archived discussions on your topic by typing in key words like "early menopause" into the search bar on the top right of your OVd home page. And you might also want to search the Ovarian Cancer Canada site for any relevant videos or stories.
Good luck with your journey and let us know any time there is anything we can help with.
Thank you @Fearless - Vol Mod. I'm feeling better by being here.
I'll wait for the next zoom session.0
Hi! I’m Sarah. I was diagnosed with stage 4 ovarian cancer (sex cord stromal neoplasm with bone and liver Mets) back in June when I was 33.I initially went into the er in may with rib pain and was sent home saying I had muscle strain. It didn’t go away so I asked a different dr and X-rays found 3 broken ribs. I then had a bone scan and a ct which found an 8lb ovarian tumour, a 4.7cm liver tumour and bone Mets including a tumour on my spine that was compressing my spinal cord.I was diagnosed and the next day I was in another city meeting with oncologist and stating five rounds of radiation on my spine.After that I had surgery to remove the tumor as well as a full hysterectomy two days after my 34th birthday. Since then I’ve completed four of my six rounds of chemo, lost all my hair, gained 30lbs from steroids and I also left an abusive relationship and fell in love with someone amazing who takes time out of his life to come to Chemo with me.My chemo is working. My liver tumour went from 4.7cm to 1.6cm and my ca125 has gone from 288 to 32! I’m heading back to receive round 5 of 6 on Tuesday. Wish me luck 💕2
@sarah_lou, So sorry to hear of your diagnosis but very happy you are having wonderful results with your treatment plan. What a wonderful group you have just connected with, these ladies are wonderful and there is so much information available here.
My ca125 was over 1600 at diagnosis after 4 rounds of chemo, full hysterectomy and 2 more rounds of chemo it was under 20. That was July of 2020, I have not had a recurrence and my ca125 is still in the teens. I too have an extra 30 lbs from steroids, hair does grow back but the mystery is what it will be when it comes back. Mine was lovely and curly for about 6 months 😊
Your positive attitude is wonderful. You got this!!2
@sarah_lou Wow! What an emotional roller coaster you've been on. Fantastic to hear that your treatment is going so well and your romantic life too:) Keep smiling and enjoying every good thing that comes your way.1
@sarah_lou, Glad you have found OVDialogue. And so happy to hear that the chemo is working. What an awful thing, though, when you were sent home the first time you went to the E.R.!0
@sarah_lou What a journey! Glad you have found this group. Sounds like that despite your diagnosis, some life changes have occurred and you are in a positive mind frame. Good for you! Our journeys are our own but will have some similarities. I, too, gained weight due to steroids, and decided to let things be until I finished treatment ( which is now completed). I am in a headspace now that I am ready to find a way to shed my weight and get stronger, I will see how I do.
Keep posting and if you are having a bad day and want to vent, this is a safe space to do so. Your positivity is amazing! You got this!1
@sarah_lou what change you've gone through the past year +. But your attitude is truly inspiring and so glad to hear your treatments are providing the desired result. You're just about done now with the chemo and having your new partner to share recovery with will be very helpful. I wish I could say it's all smooth sailing from here on but this journey we all take, although personal to each of us, is full of hills and valleys and twists and turns....as is life at the best of times. But it sounds like you have the patience, support and inner resilience to manage through.
If you haven't already, do get copy of By Your Side that OCC produces for primary diagnosis and treatment. While much is after the fact since you're now heading closer to recovery stage, you'll probably still gain some additional knowledge to help support the future. You can order it at https://ovariancanada.org/living-with-ovarian-cancer/support-resources Still By Your Side is a supplement for those who's cancer eventually recurs. While none of us like to think of that prospect, it's also handy to have the information "just in case". Both booklets are available in hard and soft copy. And of course the OCC website is chock full of valuable information from survivor stories, educational videos, to the latest developments in drugs and treatment.
I'm glad you chose to become a member of our community here at OVdialogue. This group is over 1000 strong from across the country. As a 24/7 online group you're never alone and we are here to answer questions, share stories, encourage each other and when needed, just be a "listening ear" when needed. Each Thursday I host a live online chat at 1pm ET which you may want to participate in. It's an opportunity for real-time feedback although often our discussions totally bypass the subject of the cancer itself and turn to sharing some of the normalcy in our lives. To participate in the chat just sign in to OVdialogue and click on the discussion topic TEAL THURSDAY.....Those discussions are also archived so you can scan them at any time.
Finally, I urge you to consider participating in the Teal Teas when the schedule is reset in January. One of the three that's run on the zoom platform monthly is specific to "young" survivors given some of your issues are quite specific to the additional impacts experienced by those who are premenopausal. That schedule and the link to register to participate can be found in the OCC website under Local Events. I also post the link on OVdialogue as each schedule is confirmed.
In the meantime, thank you for sharing your story with us. Where you've come from and where you are today is truly encouraging to many of our community, especially those also recently diagnosed or dealing with advanced stages of this disease. It's truly a testament to never giving up hope, especially in this day and age when new drugs and new treatments are constantly becoming available to us.
Wishing you continued success in all aspects of your life and hope we wil continue to hear from you as questions arise or, better yet, when new opportunities arise to celebrate. In the meantime wishing you a very joyful holiday season and health and peace for the new year ahead. Stay well Teal Sister......
@sarah_lou Thank you Sarah for sharing. I joined earlier this year and although I don't comment often, I do come on this site and read a lot of the comments, information and resources that are provided and I am so happy I have found this group. Take care and stay strong!
I also just want to wish the whole Teal community a happy and safe holiday season. May 2022 bring everyone health and happiness.2
@jaynevie_ So glad to see you have reached out using this site, and kudos to you for joining our last Teal Tea!! Having these resources available can help you as you navigate treatments, and we can also cheer you on. Like @Annie1950 so beautifully said, you've got your age, knowledge and beautiful attitude on your side . Hope to see you at the next Teal Tea!0