Let's get started! Come and introduce yourself
@WEMK Sorry to hear about your diagnosis, but glad to hear you had a successful desensitizing protocol. I too was treated at LRCP, although I didn't have Dr. Prefontaine - I have heard good things about that doctor.
In regards to your question about the specifics of your cancer - always trust your gut and ask for what feels right for you. I know many women who have asked for every piece of info related to their cancer while others wanted to know very little. There is no right way about this - it's up to you. Having cancer often makes you feel powerless or not in control, and one sort of reassuring aspect of this journey for me was know I had control of what information was given or not given to me.
Very glad you found OVdialogue and we are here to support you0
Hi everyone. I am new to OVdialogue and to the whole idea of having cancer. The diagnosis came as a complete surprise in mid July. My only symptoms initially were shortness of breath while swimming with my masters swim club. I thought I had both gotten out of shape because of reduced pool training times due to COVID-19 restrictions and/or a new allergy to chlorine. Chest X-Ray revealed pleural effusion; cytology pathology report from analysis of fluid came back with stage four high grade serous ovarian cancer. I started chemo August 11, and drugs did a wonderful job of controlling side effects (“better life through pharmaceuticals” says another friend going through cancer treatments - so true!). Feeling a whole lot better a week and a half later. Pleural effusion has been reduced by chemo - yahoo! Waiting for hair loss to start - quite terrified about that, but there is no way around it, I guess. Have not met anyone else with ovarian cancer, so hoping that OVdialogue will help me feel a little less alone. Support of family and friends has been amazingly wonderful, but meeting others online with this diagnosis would be good.1
Good morning @PaulineJ. I'm so sorry to hear of your diagnosis. I too was totally blown away when I was diagnosed in March 2020 with 3C Serous ovarian cancer. I've gone through eight rounds of chemo and debulking surgery and am now feeling great, long may it last. It's a scary process but hopefully we'll be around for a long time to come with the amazing pharmaceuticals on hand. Your friend is right, life through pharmaceuticals is definitely the way to go:)
This site has been wonderful for me, not only for the communal knowledge but also as a sounding board and a shoulder to lean on and I'm sure you'll feel the same way. Big hugs from Ontario.3
PaulineJ said:Hi everyone. I am new to OVdialogue and to the whole idea of having cancer. The diagnosis came as a complete surprise in mid July. My only symptoms initially were shortness of breath while swimming with my masters swim club. I thought I had both gotten out of shape because of reduced pool training times due to COVID-19 restrictions and/or a new allergy to chlorine. Chest X-Ray revealed pleural effusion; cytology pathology report from analysis of fluid came back with stage four high grade serous ovarian cancer. I started chemo August 11, and drugs did a wonderful job of controlling side effects (“better life through pharmaceuticals” says another friend going through cancer treatments - so true!). Feeling a whole lot better a week and a half later. Pleural effusion has been reduced by chemo - yahoo! Waiting for hair loss to start - quite terrified about that, but there is no way around it, I guess. Have not met anyone else with ovarian cancer, so hoping that OVdialogue will help me feel a little less alone. Support of family and friends has been amazingly wonderful, but meeting others online with this diagnosis would be good.
May your chemo treatments continue to go well. It is your journey with plans made and detours encountered. Best wishes.I recently joined this forum and my last posts were just before my chemo treatment 3 weeks ago. Alas I had a miserable 3 weeks but with medical support and education have gotten things under control, especially dehydration, constipation and depletion of essentially vitamins & minerals.Today I start my next round of chemo feeling full of confidence and knowledge to have a better outcome.I am grateful for the comments posted in response to my earlier correspondence. Your support is noticed and welcome. Thank you.-Wendy2
@PaulineJ I forgot to mention this link that I found really helpful after hair loss: https://www.youtube.com/watch?v=gzTxYBwQgJo. The dollar store is a great resource and you can come up with some pretty unique styles.2
@PaulineJ. I too have high grade serious cancer. I am 1 yr in remission after 6 chemo sessions and surgery. It is challenging to stay focused on the positive and go through this journey. There is a tremendous amount of support on this site. Welcome teal warrior! Together we can walk through this2
Good Morning Pauline,
Welcome to the group. I am positive you will find great support here.
My story is similar to Annie's and I was diagnosed with Stage 3C Peritoneal Cancer (very similar to Ovarian and treated much the same way) after experiencing a GI Bleed in Feb of 2021. I underwent a colonoscopy, had a biopsy that came back with the markers for Ovarian Cancer and was referred to Gyno/Oncologist in Hamilton, Ont. I underwent hysterectomy, bowel anatamose and debulking on March 17th, 2021. I have just finished the last of my chemo sessions and yes, thank goodness for pharmaceuticals. We figured out the best "cocktail" for me both before and after chemo and it helped immensely. The hair loss for me was emotional but also physical. As mine came out or thinned, it hurt my scalp too much so I made the decision to remove it after that. I don't mind at all having no hair and sometimes forget to put a headscarf on when I go out. I feel people stare no matter what you do and so I embrace it and rock it!
I wish you all the best for your treatment, and hope you find some help in this forum.
Take care of you and rest when you need to.2
Thank-you @Annie1950, @WEMK, @NovaScotiagirl, @Strongwoman for your early morning replies (early even by EST if that is where you are). The head wrap tutorial looks great. Will have a look. @Strongwoman: Thank-you for alerting me to the possibility of the hair loss process being uncomfortable. I am about a week away from my second chemo cycle so thinking that once I notice substantial hair loss I will have my head buzz cut. I am so relieved to hear that someone has embraced the situation and wandered into stores without their head covering. That will be me too, I am sure! A couple of weeks ago I went for a hike here in BC with someone who was finishing their chemo and quite comfortable bearing their bald head (when in the shade, of course!).0
Hi @PaulineJ, and welcome to OVdialogue and our community. We are around 900 strong, all OVC survivors either in diagnosis, treatment, recurrence or recovery and hailing from across Canada. So glad you reached out and yes, there is huge comfort knowing you're not alone and being able to benefit from the experiences of others. And it's great to see a number of our Teal Sisters have already been in contact.
If I can assure you of anything it's that, firstly, you will never be alone in this group and, while your diagnosis came as a shock, as it has for most of us, this is a great time in the history of treatment for ovarian cancer; a disease that had been largely overlooked in funding for research in past. Now we are benefiting from significant engagement from the federal government, a few of the provinces, and an increase in awareness that has brought about significant increase in private donations. That all translates into research, new drugs and treatments, and attraction of the best and brightest in the medical community as more and more devote their work to our disease. I was diagnosed in early 2017 with high grade serous epithelial OVC and if I went by statistics, my prognosis would have been about 3 years if first line treatment did not provide for a sustained total remission. Well, here I am.....one surgery, 6 rounds of chemo, one recurrence managed on a clinical trial for almost two years and now stable again following 8 rounds of chemo for my most recent recurrence. I'm now five years in and still going strong. That said, you'll also find many who are long term survivors where first line treatment has been totally successful and sustained. So there is much hope...not just for complete remission but also for those of us with recurrent OVC to live longer and better lives. And BTW, I too had a significant pleural effusion at diagnosis; so bad that I had become almost wheel chair bound. But one drain of fluid gave me temporary relief and the chemo cleared it up entirely.
As you're new to the disease, I am going make some recommendations. If you haven't already, access the Ovarian Cancer Canada website https://ovariancanada.org as your primary source of information on this disease. You'll find it chock full of resources, information on current research, videos on various subjects of interest...all information having been appropriately vetted for accuracy by OCC's clinical team. And, please order By Your Side. It is a wonderful booklet to guide you through your current journey. It comes in both hard and soft copy. I have both, along with it's sister publication Still By Your Side for recurrent survivors. https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources And use the Search feature in the upper right of your screen to access historical discussions on topics that might be of interest or value to you. Just type in related key words like "neuropathy' if you want information on that topic or "nausea" if you're looking for ways to manage the queasiness we often feel.
You mention you are in BC, and I believe there is a support group out there you may want to engage in. Tracy Kolwich, our Regional Director out there can provide more information on it and connect you to the group so I am copying her to reach out to you along with one of our members who I believe might be able to help in that regard since Tracy is on vacation until the end of the month. @walkabout @TracyOCC.
As you can see, this site operates 7X24 and participation can be fairly immediate but sometimes slow since it's reliant on how active our members are at any given point in time. That said, I host a weekly live online chat for members on Thursdays at 1pm EST. You might find engaging in that forum helpful. To participate you need only sign in on the day and hour and click on the discussion topic: Teal Thursday...... But you can view the historical discussions any time. Love to have you join us any time.
Finally, my best advice is to learn as much as you can about the disease. Prepare yourself for your meetings with your cancer care team with the questions and concerns you have. And always ensure you communicate clearly how you're feeling. Your cancer care team, which includes the nurses in the chemo room, are there to help you navigate this disease and treatment as comfortably as possible, but they can't do their job if they don't know you're having some issues...even little ones. I found when I was first treated that I really sailed through and credit that to great communication with my support team.
Pauline, I wish your treatment to continue smoothly and to have the best outcome possible. I'm here in Ontario where we are fairly progressive but, have found BC the work being done there to be exceptional in terms of both medical and and more holistic intervention. So you're in a good place and a good time in the history of this disease.
Reach out to us anytime we can be of assistance.....we offer information, encouragement, and sometimes just that shoulder to lean on when you need it, from people who 'get it'.
@WEMK Wendy, so sorry your first chemo cycle was rough on you but happy to hear you and your cancer team managed to get it all under control. Often the first round can be tricky. Otherwise, just want to wish you good luck with this new round of chemo. Do let us know how you're doing....
I was diagnosed with stage3/4 Jan 2018.
Had debulking surgery, removed 2 sections of my bowel and 2 ribs, and a Temporary colostomy. One round of Chemo
I was treated at Sunny Brook
Today I am all clear and feeling good!
My biggest complaint is the neuropathy in my feet from the chemo. I have an untested theory to prevent that. Put your feet in an ice bath during chemo. Worth a try.Sending you Love and Light and Hope
Hi. I have just finished 4 of 6 rounds of chemo. I have found that cbd oil helps alot with the leg pain I get a couple of days after treatment. I am also taking LGlutamine as it has shown to reduce neuropathy. I put ice on my hands and feet during treatment as well. The London cancer clinic has special gloves and booties with the ice packs built in. I appreciate all the support and resources available and am grateful for our incredible health care system.0
@PaulineJ. I too lost my hair (all over lol) I did find that my hair follicles were painful both losing and regrowing my hair it is certainly manageable. I do have neuropathy in my hands and feet but am so grateful to my cancer team as they managed the chemotherapy very well. I had a reaction to the chemo the second round and it was quickly adjusted. The breakthrough drugs did not work for me, so they suggested ginger gravel, peppermint tea and a probiotic which worked beautifully. Best wishes being sent to you, you got this!1
@PaulineJ - Welcome to our Group! I'm just passing my fifth anniversary of my last chemo treatment but the memories are still very vivid. I shaved my head a week after my first treatment - it was one thing I had control over. Then took a picture with my husband and son, who are both 'hairless' as well. It's actually quite liberating not to worry about haircuts, blow dryers and curling irons for a while. The other advantage is I didn't have to shave my legs or pluck whiskers for months! Rest assured, it will all grow back.With your first treatment over, you know what to expect next time. YES! Take any drugs you are offered! This isn't the time to be a hero. And be sure to stay well-hydrated before treatment and for the next few days.Keep us posted on your progress - feel free to rant - we've all been there!Stay strong!1
Thank-you @Fearless Vol Mod for all the information. When I got the diagnosis one of the first things I did was contact Ovarian Cancer Canada and get a copy of By Your Side, and have a conversation with the regional director here in BC. I also signed up for the Walk of Hope, and this coming week am going to be shamelessly guilting my friends and family into making donations 😉
@battleoflife12018 Neuropathy in the feet seems to be common. Another friend of mine with a different cancer also experienced that issue, but it seems to be going away gradually.
@LynneA I wonder if the intermittent mild to moderate pain behind my left knee that I felt shortly after the first chemo day is like what you described. I will look into CBD oil.
@NovaScotiagirl What do you mean by “break through drugs”? Are you describing the drugs given to control the nausea? I was prescribed Ondansetron to be taken before chemo, then received Dexamethasone steroids by iv on chemo day as well as in pill form for the following 4 days. I think I went through withdrawal on day 6 because I felt like a jellyfish - quite shaky on my feet and no energy! I will have a peek at the Side effects threads to see if anyone else had the same experience.
@kastoyles I hope I get to enjoy a few months without body hair as I normally swim and am forever shaving. Someone else described how they lost their head of hair during chemo but not their chin whiskers - how unfair is that?! So happy that you have passed you fifth anniversary. That is encouraging to hear. I am aiming to end up on that side of the statistics.0
@PaulineJ. I was given 3 drugs to take after chemo the breakthrough was for nausea if necessary. Treatment plans tend to be tailored to each person, Hope you go through it with no complications.0
@PaulineJ I too experienced that jelly fish- like feeling coming off a round of Dex myself. In my last rounds of chemo I was given Dex in high doses for about five days before, to desensitize me in preparation for the chemo and then in decreasing doses for five days following. I found by the third day after chemo I'd begun to feel shaky and off balance and mentally in a fog. By then I was down to 2 pills a day and, with my oncologist's consent, I just stopped the weaning process. Within a couple of days after that I started feeling my old (not literally) self. I am convinced it was an overload of Dex. Each of us has different tolerances for the drugs we take. For me, to take the Dex as it's been prescribed for you would not have caused any problems. But I was taking it in very high doses for five days and then weaning for another five, which is a lot and clearly more than my system could tolerate.
As mentioned before, ensure you keep open and timely communication with your cancer care team to enable them to manage your meds in the most effective way.
For the rest of our members reading this thread, there have been some great suggestions here for PaulineJ to assist in management of side effects. But a reminder to all, that what works for one is not necessarily right for another. Even simple OTC meds or the use of cannabis products should be reviewed with your care team for suitability to your own personal situation. Even some foods can be contraindicated for some medications. I know when I was on Olaparib for two years not only could I not consume grapefruit, Seville oranges were also restricted....the main ingredient in marmalade.
PaulineJ you show such great spirit and natural curiosity. Both will serve you well as you move ahead in your journey. Good luck....and sending positive thoughts your way.
Hello Pauline J-
I am Walkabout who Kathi mentioned in her post- I would be so happy to meet you over the phone or in person which ever your preference and tell you more about our Vancouver Support group - I am a 22 year survivor and so long ago felt like you -" I have to talk with some else going through all of this" - so with a few others so long ago, I started the support group and have watched it evolve to its place today in our lives- its such a gift to share and listen and not feel alone. I also am a swimmer and went back to the water for my mental health well being in February and have been swimming lengths for an hour each day -so we have a things in common just from the get go;) - I look forward hearing from you or meeting you on our Teal Tuesday session ( on holidays for August) a on Zoom the 2nd Tuesday each month- September 14th at 10 am - a link is sent out to us by Tracy Kolwich - Diane
" You mention you are in BC, and I believe there is a support group out there you may want to engage in. Tracy Kolwich, our Regional Director out there can provide more information on it and connect you to the group so I am copying her to reach out to you along with one of our members who I believe might be able to help in that regard since Tracy is on vacation until the end of the month. @walkabout @TracyOCC.1
Hello All, Cheryl in Lunenburg, NS here. I started having breathing difficulty on Christmas Day 2020 and went to the ER on 28 December. An x-ray showed my right lung completely white. The internist on call drained 1.5 litres of fluid from the pleura (the bag around the lung) that night. I told him it was like a bottle of wine. A CAT scan on 31 December added information for my GP and the internist to start the diagnosis process. A week later the examination of the cells in that fluid came back showing cancer cells and the CAT scan showed that they had spread elsewhere in my abdomen. I immediately jumped to lung cancer. Before I could be sent to the oncologist something had to be done with the pleura of the lung. Good thing, too, as my breathing was getting worse and worse. Surgery to remove fluid, take a biopsy and put in a drain tube happened in early February . This time it was 4 litres of fluid - a big milk jug sitting on my chest. No wonder I couldn't breathe!
I saw the oncologist quickly after that, but all of the biopsies, blood tests, CAT, PET, MRI had indicated cancer, but with no known primary source. He planned out a intravenous chemo regimen for me. However, before it started, the gyne-oncology team said they thought this was a cancer with a gynecological source, although they weren't sure what type. I moved from abdominal unknown source caner to some type of gynecological cancer, but still with an unknown source. Thank goodness both sets of oncologists had the same chemo regimen in mind, so I didn't lose any time.
I started chemo on 16 March 2021 with paclitaxel and carboplatin. The paclitaxel caused me to go in to anaphylactic shock. But that first chemo session (after they had stopped the severe allergic reaction), I was able to take the carboplatin. I was switched to dositaxel and although we found out I am allergic to that too, it is not as severe. Load me up with enough anti-histamine and do the drop slowly and I can handle it. We did discover though that the saline flush that was done after carboplatin, at the end of a chemo session, caused a painful burning session. It would leave a burn at the site of the intravenous and up the vein (arm), almost from the inside out, that took ages to go away. As I sit here in September 2021, I still have a burn on my hand where the last chemo session took place on 16 July 2021. No feeling in the area, either. Instead of using saline, the chemo oncologist, pharmacist and nurse decided to switch to using a glucose flush. That worked very well, until a mix up at my last chemo session.
I had four chemo sessions, then a CAT scan that showed reduction of several nodules, then debulking. The debulking was uterus, fallopian tubes, ovaries, omentum and appendix. I offered up my tonsils while they were at it, but strangely they didn't think that was a good idea. The surgery took place on 7 June 2021 and two and a half weeks later I was back to chemo. A complete diagnosis only came in late July with the lab results of the organs removed during debulking: High Grade Serous Ovarian Cancer.
About the same time as I got the diagnosis I got the results of genetic testing. No genetic connection at all. My two sisters, their daughters, and even a granddaughter were very relieved to hear that.
My last chemo was 16 July 2021. Another CAT scan in early August showed everything, except in two lymph nodes was gone. The nodules in the lymph nodes had gotten large, about twice as large. I couldn't quite grasp how they could do that in the midst of chemo. I heard the results of the CAT scan from my GP four days before hearing it from my oncologist. I must admit, I thought it was really bad news that the lymph nodes were enlarged from earlier CAT scans. I catastrophized for those four days. I was super surprised when the oncologist started the conversation with "This is good news." she didn't think the lymph nodes were enlarged necessarily by the cancer. I could have had a slight infection or they could have been enlarged by the COVID vaccine second dose that I had six days before the CAT scan. That helped. Given that this was six days before my 65th birthday, it really helped the celebration.
On 10 September 2021 I began a regimen of daily dose chemo with Niraparib. So far so good, although low to moderate nausea, by my scale, has been a feature of both the intravenous and capsule chemo. I have to tell you, I had never had nausea before that didn't start with my stomach upset. So after each chemo, the oncology nurse would ask me if I had nausea, and I would answer no, but that I felt "yucky" - just low grade not feeling great, usually the third to fifth or sixth day after chemo. It would just get better the further I got from the chemo date.. I never took the anti-nausea medication that I had been given, because I wasn't realizing that I had nausea. With the Niraparib, I finally figured out what was nausea - mainly because low grade yucky turned into to feeling like there was something in my throat around the base of my neck, then to gagging. No vomiting - yet. Now that I have got a better handle on nausea (how foolish I have felt), I'm taking the anti-nausea meds and they are really helping. The nausea has really been my only side effect so far. Well, I lost my hair, but that didn't bother me - saved on haircuts. Its growing back in now and friends and family think I have a new gamine style.
I have no idea how long I will be on Niraparib, or what would be the deciding factors on that, nor really what comes next. But I have a good oncologist and will talk to her on 28 September to find out.
In January, I thought I would die in a month and panicked, I tried getting everything in order for a death while having trouble breathing. All the activity of chemo, surgery and CAT scans kept me distracted, but I was still expecting the worst news at any moment. With the results of the last CAT scan showing lymph gland enlargement, I didn't think I might even make it to my sixty fifth birthday. I harboured those fears even when the oncologist said otherwise. It was only when I found your website that I was better able to put this journey in some perspective. Seeing the posts of others, and watching the videos really helped. I live in a small town and although I have been very open about what is going on, I have not found anyone who could say "me, too". Your site and the folks that participate in it, are the people I need to know.
I have done a lot of relaxation training and guided imagery during the intravenous chemo sessions, and to a certain extent with the surgery. I'm finding it a bit harder with a daily dose capsule. I envisioned the chemo travelling through my veins and body, and like Ms Pacman munching the cancerous cells. It helped during chemo, but it hasnt been effective with feelings, regrets, etc of mortality. I'll have to work on that and with this website, I think I can.
By the way, I am 65 years old, never had any children, married with three step kids and an adopted child - all are adults now, and have been amazingly lucky to have had very little in the way of illness, broken bones, or surgery (just one on a shoulder operation) before all of this. 2021 has been a year of firsts for me: first time my lung was drained, first MRI and PET scan, first thoracic surgery, first cancer diagnosis, first chemo, first severe allergic reaction, first surgery to remove a bunch of organs, and first time on chemo pills. I'm sure there will be other firsts, but who knows what they will be. I just hope they go on for a long, long time.
More than enough info to start and its been therapeutic doing it. Thank you for reading.
@Cheryllunenburg, Hi Cheryl I live in Dartmouth and have high grade serious cancer also. I had 3 litres then 5 litres drained from my stomach Feb 2020 when I was diagnosed. This is a journey isn't it. I had surgery in June of 2020 and finished chemo July 2020. I am currently in remission and grateful for my oncology team. The ladies on this site are amazing and we are here to support each other. I am so happy to see another Maritimer. Stay well, have faith, let yourself be still and listen to your body, @nsgirl
Welcome to OVdialogue. I'm so glad you're here and part of our community.....although sorry it always takes a diagnosis of this lousy disease that brings us together. Wow, quite the journey you've been on and how much you've taken in stride. And nice to see you've already connected with a kindred spirit out your way.
Let us be a sounding board when you need it. I agree that writing your story and your thoughts and feelings and fears can be enormously therapeutic. Sending it to a group who get it...who've all walked in your shoes in some way or other...is a big bonus. At least it has been for me. I'm not only the Moderator for OVd, I'm also a survivor (high grade serous stage 3C) in my fifth year of treatment, feeling strong, and loving each day I have ....hopefully many more to come.
And beyond listening, if there is anything else you need from us you have only to ask. We're here for you every step of the way, even if it just means lending an ear when you need it.
Big hugs and know you're in everyone's thoughts...
Hello everyone! I'm Victoria and newly moved to Winnipeg a few months ago. Was surprise diagnosed during the move on an emergency hospital visit. I've come to terms with it, and dealing with my diagnosis the best I can.
I don't have official staging and grading yet, as they could not get that information from my biopsy, but they are going to give it to me after surgery I expect. That definitely disappointed me, but hey, what can you do?
I'm scared, but hopeful. I know it's late stage, the mass is over 34 cm long.
I'm currently doing my second round of chemo to shrink the tumor, and then they plan for a debulking after my third if enough shrinkage (seriously think this is probably the only time one hopes for massive shrinkage! LOL) has occurred.
I have just had my port put in on Tuesday as well, and they accessed it today for the chemo.
I asked Cancer Care Manitoba for a peer, but they don't have one for Ovarian Cancer currently, so I plan to work hard to recover and be that person! However, if there is anyone from Winnipeg who's been there in my shoes, I'd love a buddy who might want to meet up for coffee sometime?
I'm a 40 year old mom of two, aged 16 and 11. I have a Shiba dog, and two cats, and a job from home I definitely plan to return to.
Nice to meet you1
@missvixx It's definitely a horrible diagnosis and tough to swallow. I was in your shoes a year and a half ago, wandering around in a surreal world and wondering what would happen to me and what the treatment would be like. The anxiety was so overwhelming that I need pills to sleep. I hope your coping a little better than I did but if not don't be afraid to ask for help whether it be mental or physical. We know, it's a very scary time.
I'm happy to inform you that a year and half later I'm in excellent health and cancer free. I'm currently enjoying a vacation in Florida. Life went back to normal for me, long may it last that way, and I hope the same will happen to you..
You've found the right site to learn, listen and sometimes lean on people as they will you. I'm not sure but I think there's a young survivor's group that you'll have a lot in comon with.
Big hugs from Ontario:)2
@missVixx I am sorry to hear about your recent and sudden diagnosis. I too, found out my diagnosis from being admitted from the ER as a result of a GI Bleed. After the whirlwind that happened after that, it was a lot to process in a short period of time. Along with it did come a lot of anxiety while waiting to have the surgery. I am fortunate that I had an amazing support team around me and am thankful that I also found this group. I wish you the best in your journey and remember that your journey is your own. Communicate with your health team to optimize your well being through this process. If unsure of anything, reach out to this community and ask questions along the way. Take care and stay strong!2
Hi @missvixx Welcome to our community. I'm so glad you found us and hope you find our group helpful as you navigate your way through your journey. Of course, I am so sad to hear of your diagnosis and the shock you experienced. I can tell you your story, as you've already seen in early responses to you, is very common. I am the moderator of this site but I am also a survivor of almost five years now. Not cured unfortunately but managing to live successfully with the disease and the occasional interruptions for treatment. My story the sane a yours though...a totally unexpected diagnosis and by the time they found it I was late stage...high grade serous stage 3C actually. So there are many of us who share your experience and even where our paths will differ, we all "get it".
So please do lean on us for support. We won't let you be alone in this.
If I have any immediate suggestions for you, they are:
- use the ovarian cancer canada website as your primary resource, after your cancer care team of course, for information on this disease. If you spend some time perusing the website you'll find an enormous volume of information from resources available, event announcements, shared stories, updates on research and trials and more
- order the Ovarian Cancer Canada booklet By Your Side if you haven't already. It comes in both soft and hard copy and free. So many of us found it highly valued as a guide throughout our primary treatment. You can access the order form at https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources
Please continue to reach out anytime and tell us how we can help...or just use us as sounding board or virtual shoulder to lean on if you just need or let off some steam in a safe and caring place.
Big hugs to you...I sure you need all you can get right now......
Thank you so much for the warm welcome! I've got the By Your Side book, and it's amazing. It's been keeping me from googling stuff during this stressful time! I did send Val and Doreen an email last night, so hopefully I'll hear back with some details! I cannot wait until I too can say I'm surviving with or without this! I expect my surgery to be this winter, they want to do three rounds of chemo first to see if they can shrink Toby (I named him!). I'm really looking forward to getting to know you all!
You go get Toby and get rid of the so and so! He wasn't invited and is a most unwelcome guest. Humph.3
hello my name is Maria and I’m so happy I have found this group. I’m 57 and was diagnosed with ovarian cancer this past February. I recently completed 6 rounds of chemo and had a total hysterectomy this past March. At this point I am now trying to think positive and live life as best I can but continue to have negative thoughts come through my head almost daily. I am meeting with my oncologist as follow up December 1 but wish I could meet with them sooner. It’s been a tough year so far for myself but also for my husband and family. Glad I can talk to this group.0
@mar_hopeful I was in your shoes about a year ago and have had a wonderful year since with a few hiccups along the way but thank heavens nothing that couldn't be dealt with. It's a surreal world when you're first bowled over with the diagnosis but treatment options have come so far that the prognosis for quite a few more years is in the cards. I'm doing my best to live life large and enjoy everything that I can and I'm sure you and your family will do the same now that treatment is finished and the shock is over. It's made me less likely to 'sweat the small stuff' and my anxiety level has gone down when waiting for results from scans and blood tests.
This site has been a source of comfort, inspiration, education and companionship and I'm sure you'll find it to be the same for you.
A big hug from the GTA:)
@Annie1950 Thank you Annie for your message. I think being part of this group will help my mental state. You are so right. I have learned that there are a lot of things that I used to worry about that now I don’t even think about.