Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Let's get started! Come and introduce yourself
Comments
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Hi, I'm Martha. I'm 58, live in central Ontario, married with two grown sons. I'm a Registered Dietitian in Long Term Care and in private practice using Low Carb Healthy Fats approach for healthy aging. I found a large lump in my lower abdomen in mid July when I laid down on the floor to do a plank. It was determined to be an enormous fluid filled cyst, by ultrasound on Aug 1. My family doctor assured me that there was little chance of it being cancer. Being summer, it took two months to finally get to surgery with the local Gyn doc. She also assured me that if she "thought it was cancer, she would not be the one doing the surgery". Even leaving the OR, she wrote on my discharge papers that everything went great, 1500 mls fluid removed!!, and come see her in 4-6 weeks. Six days later, she called to say that the pathology report was back. It was endometriod cancer, FIGO grade 2. Because nobody was expecting it, and the cyst being so huge, it was ruptured inside my abdomen, and no special precautions were taken re avoiding spill. I was referred to London, where I just saw an oncologist last week. The plan was that I would have a CT scan to rule out the need for further surgery (I still have my uterus - only ovaries and tubes were removed), and then some fairly aggressive IV chemo to address any remaining cancer cells. No radiation. I was pretty happy with that plan - it could all be done in my own small city hospital, as London is 3 hours drive away.
So, as I'm planning my route through the next 6 months, I got a call yesterday from the London oncologist to say that, unbeknownst to him, my pathology was sent off to London as well, and the pathologists have determined that the local pathologist was wrong and that I actually have serous ovarian cancer. Now we are waiting on another visit with the London doc (hopefully by videoconference), and my well-planned future is all blown out of the water. If I decide on IP chemo, I have to do all treatments in London. Three hours away through the dead of winter... Sucks! And the no-surgery conclusion is no longer a sure thing either. And the outcome stats are not as positive... I feel like I've been punched in the stomach...0 -
Welcome @grace3379 - thank you for joining us and sharing your story.... was that when you were first diagnosed or a new pregnancy?0
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Hello @marthat - welcome to the chat site. Sorry for what you have been through - that is tough stuff. We hope you will find much support here on the site. So you are still in the process of deciding to have IV vs IP chemo based on what the Gyne Onc team has presented to you?0
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Yes, I am. Since I've had this sudden change in diagnosis, the options for treatment are now different. Is there a thread on this forum about IV vs IP treatments, re efficacy and/or side effects?Flowergirl said:Hello @marthat - welcome to the chat site. Sorry for what you have been through - that is tough stuff. We hope you will find much support here on the site. So you are still in the process of deciding to have IV vs IP chemo based on what the Gyne Onc team has presented to you?0 -
Hi @Flowergirl. On April, 2017 I started to get positive pregnancy result BHCG goes up and down but didn't go more than 1,300. My OB thought I had miscarriage and got pregnant again but the levels doesn't match up. Until I had US on Jan 2018 that shows 4cm cyst. And on Feb 2018 US shows 8cm cyst beside my ovary. So I had operation to remove the cyst right away. but since my OB thought it was a cyst, she burst it inside. Now the pathology came... 2 tumours found Yolk Sac & Choriocarcinoma, ovary tissues came back as benign. Referred me to Oncologist, did CT scan shows normal. So she diagnose me as stage 1A. Had operation to remove my left ovary and tube on April2018 and it came back as benign. Even all my blood test are normal. But I was told I needed to do adjuvant chemo (BEP) because I had a very aggressive tumor. Started chemo on May 14 & finished on July 20. Followup CT scan and bloodwork next month. Praying it all be normal.0
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Hi @bsblover4evercanada. We had the same situation. I had yolk sac tumor too. Thought was just 8cm cyst but turned out to be yolk sac & Choriocarcinoma. But my ovary is benign. Did you get diagnosed? Mine was stage 1A. I did BEP chemo from May 14- July 20 this year. What kind of chemo did u get? For how long?0
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Hi @marthat - sorry, there is not much out there or on this forum regarding IP treatment - Intraperitoneal Chemotherapy - unless someone can share their experience. I recall the DR team in my province indicating that the treatment varies by province and depending on the patient's situation (staging,grading,physical, timing etc). Has your team presented the two options to you?
Hope you are doing well tonight0 -
Hello @grace3379 - thanks for your update - yes for sure we are sending good thoughts and positive vibes your way.
How are you feeling now?
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Hi all. I am new here and wanted to introduce myself. I was diagnosed in August of this year with 2 primary cancers 1B endometrial and 1C ovarian. Both adenocarcinoma, grade 1-- so prognosis is good. I had a radical hysterectomy in August and am on cycle 4 of chemo. Started with carbo-taxol. But I had two infusion reactions to the taxol so docetaxel has been substituted in. Just wanted to come here and chat with women. Struggling a little with the chemo side effects and the emotional impact of the cancer and the surgical menopause.
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Hello @HaliGirl - welcome to the chat site. Are you still on the chemo or completed? ... yes those side effects can be trouble some and hope they will lessen over time. This is the place to be for support.0
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Hello Marthat
I had IP chemo at Sunny Brook.
One drug was given regular IV in my arm. The 2nd drug was IP. I had 6 treatments every 3 weeks. Had my last treatment in August.
My side effects were feeling tired, neuropathy of my feet. No nausea at all. My blood levels were low, hgb, magnesium, and neutrophils. Had to delay one of my chemo treatments for 2weeks until my neutrophils returned to normal. My levels were low again after my last chemo. Got a yeast infection, took 3 weeks for neutrophils to return to normal. Mag remained low on an oral supplement.
I still have my porta Cath in my abdomen.
Will have it removed next week when I have my ostomy reversal surgery.
I had no problems with the porta cath at all
All the best to you
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Thanks for the welcome. Hoping to get some info and community here. Still on the chemo. Cycle 4 of 6.Flowergirl said:Hello @HaliGirl - welcome to the chat site. Are you still on the chemo or completed? ... yes those side effects can be trouble some and hope they will lessen over time. This is the place to be for support.0 -
Hi ladies, my name is Sheena. I’m 34 years old and a mother of two children. Ages 16 and 12. (Yes I was 16yrs old when I got pregnant). I was diagnosed in 2013. I got my period and didn’t stop I had my family doctor check me when she did she said oh my god you have a huge mass in there. She sent me to local OB/GYN. He checked me and said if he biopsied it I would bleed out. He sent me to a Ob/gyn in Hamilton Ontario. He did bunch test and set to have surgery to remove it. Well it was the size of a grapefruit on my vagina wall. I was suppose to have both my ovaries left. When they did surgery the tumour took over one ovary. I had one left. I had partial hysterectomy and vagina reconstruction because of the tumour. I recovered well. Pathology came back saying I had FATWO ( Female adnexal tumor of probable Wolffian origin). That the tumour was beign. Went on with my life but has to have check ups every 3-6 months in Sudbury Ontario. The surgeon/ ob/gyn retired. So I got a new ob/gyn in Barrie Ontario. I was getting constant sharp pain in my vagina. They did MRI and noticed new tumours. This was year 2016. We kept an eye on it for a year. In November of 2017. I had my second surgery I had new tumours one on my tailbone, one on my omentuem, and one on my last ovary. We saw tumours on liver but left them as she was only a ob/gyn. We did the surgery went well. Pathology came back as FATWO again but it cancerous this time last tumour was never beign in the first place. So she sent a referral to a great oncologist in Toronto Princess Margaret Hospital. She said gonna send you to the best of the best. I had a consultation I signed up for studies after studies. I was part of a tumour board team. I had another Ob/gyn and upper G.I surgeon. We planned the next surgery i had a tumour inside my liver, outside my liver attached to my diaphragm. I had a tumour on my spleen. Surgery was September 2018. So I had my spleen removed, good portion of my liver and diaphragm removed. I was in hospital for 9 days came home for 2 days and was admitted to hospital in North Bay Ontario for abbesses in my spleen area and water on my lungs. I was put of heavy antibiotics for 4 weeks. I stayed in hospital for a week and a half. I came home few more day and had to go to the emergency room. I pulled every single muscle between my ribs. I thought for sure I broke rib. I was told radiation and chemo will not kill FATWO as it’s considered low grade cancer and just not enough research out there on this. They did pathology with last surgery 2018. Came back FATWO. They decided to send all my tissues and tumours to Harvard in the states for a second opinion. Well I had an oncologist appointment last Monday I was misdiagnosed this whole time and I have cancer called Endometrioid and Clear Cell Carcinoma. So I have a Ct Scan booked for Thursday I ship the CD down to Toronto and we will have a teleconference. They want to do 6 cycles of Chemo. As soon as CD has been reviewed I will get my Chemo schedule. I would love to talk to other woman who have same cancers as me to educate myself more about it. Sorry this post is so long. Thank you for reading my story.0
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hello @Sheena178 - thank you for sharing all of that.. my goodness you have been through a lot and sorry it has taken this toll on you...that was many surgeries... glad they have looked after getting you into the treatment now.
We hope you will find much support here... there are many topics on the site and we have several pages of comments. You can scroll through or use the search bar at the top right. You can check out the chemotherapy topic to see some points of assistance, if desired. Please do update us when you can and we will be thinking of you.0 -
Hi I'm Shelly. Diagnosed with grade 3C metastatic ovarian cancer May 2018. I've had 6 cycles of chemo and debulking surgery and now on Bevacizamab therapy. I have been lucky that my cancer was diagnosed quickly and treatment started. I am amazed how many women have ovarian cancer but more amazing is how much support within the OC community. I guess I needed to know that I'm not alone with this. And I'm interested in all the differences in treatment and options.1
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Hello @rdettafly - a warm welcome to you joining the chat site. How are you feeling post chemo and on the Bevacizamab?
Many topics of support here (we are up to many pages) and we invite you to join us on Teal Tuesdays at 7:00 PM CST for live chats if you are around.0 -
I'm feeling the usual side effects I've been told but nothing compared to what some of the ladies have gone through. I will join the chats as I can...it is wonderful to join such a strong positive supportive group.0
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great to hear - glad you are with us!0
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I know it has now been almost a month since your surgery. I hope you are recovering well. In addition to the cancer navigator program at the NSHA, I have heard good things about the support services offered by the Cancer Society.JanCan said:Also with a big surgery how long is the hospital stay, usually?0 -
I’ve been reading all these brave introductions since my diagnosis in July of 2018 without adding my voice. So even though I don’t have any advice for others on this chat line (yet), I can share my experience and offer support to those who are on this journey with me.
I’m a newly retired psych. nurse. I’ve had abdominal pain along with weight loss and low appetite for about five years. GP and surgeon did lots of testing for gastrointestinal problems with no results. Finally a CT scan with dye picked up a uterine tumour confirmed by an intravaginal ultrasound. Two months later I had debulking surgery to remove the cancer that had spread throughout the abdomen. Woke up with no spleen, an ileostomy, an IP port, a damaged (during surgery) femoral nerve that has healed enough that I can finally walk a little, a spleen also damaged during surgery, and ..... well, too much detail, right?
My recovery has been slow. The impact of the diagnosis and treatment are life-altering both psychologically and physically, but the care I’ve received from the specialists and nurses at the British Columbia Cancer Agency has been tremendous. I’ve had four IV chemo sessions out of six (the oncologist decided against IP chemo) and am now looking forward to surgery to reverse the ileostomy and remove the IP port. I know the battle is not over, that remissions and recurrences are common.
Thank you all for being part of this link to the tribe. I don’t feel alone anymore.2 -
Hello @HoldingOn - welcome to the chat site and thank you for sharing part of your story. We are here to offer support when you need it. Good to hear you are on the recovery road and wishing you the best possible outcome.
Please join us on Tuesdays for live chat at 7:00 PM CST if you are up for it.0 -
Hi everyone, I was diagnosed with stage 1C clear cell in 2013 discovered when I felt what turned out to be a 14cm cyst on my right ovary. Resulting surgery discovered a cyst on my left ovary and endometriosis as well as a few fibroids. I was virtually symptom free prior to feeling the cyst. I opted for 6 rounds of carbo/taxol chemo and have been ovarian cancer free since. However in 2016 a catscan done to follow up on the ovarian cancer revealed a tumour in my right kidney. That kidney had to be removed with the tumour staged at 1C. No resulting treatment was required, it was not found to be linked to ovarian cancer and I am now followed up for both cancers. I was also symptomless with the kidney cancer. At this point in time I am doing well even though now I am undergoing testing on an enlarged nodule on my thyroid. I retired at age 55 in 2016 when I received the second diagnosis to enjoy life and I certainly am.
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Hello @Prairiebreeze - hope this message finds you doing ok today and welcome to the chat site.
Thank you for sharing your story and it seems you are done the treatment and now getting the thyroid looked into, is that correct? Good to hear you are enjoying life. We hope you will find lots of information and support here.1 -
Hi everyone. I first posted in November and here I am 8 weeks post surgery and had my first cycle of paxlitaxel and carboplatin yesterday. My 3 hour surgery tuned into 7.5 hours with lots of complications... total colectomy with ileostomy as well as omentectomy BSO and hysterectomy. Stripped my diaphragm and took lymph nodes too, I was in hospital for 25 days with many complications including wound dehiscence, needing three blood transfusions, pneumomedisyinum, and two pockets of infection: subhepatic abscess and pelvic abcess requiring CT guided placement of drainage with bags attached on each side, and they were removed in clinic just last week. The wound required two weeks of vacuum dressing which was thankfully removed the day of discharge.
I offer this story not for pity but to show what a person can survive in this journey with the terrific health care we have for gyne oncology in Nova Scotia. The diligence of the nurses on 5A Centennial at the VG site of the QE2 Health Sciences Centre is amazing. The docs and residents visited morning and evening with updates and information on what to expect. I met with a patient navigator last week and she was very helpful indeed. The VON came daily to my rural home to flush my drains and do wound care, and ostomy support, wow, what a service! Now it is once weekly for the PICC line dressing.
Thank you for this discussion thread, I will be monitoring the chemo side effects threads but the meds they have given me seem to be working ok for now. Best wishes to my sister ovarian cancer survivors, we have got this!1 -
Hello @JanCan... thanks for posting your update. Sorry to hear about the complications and it sounds like you were well looked after - that is so good to hear. And yes, it is important to note and share the struggles and that there are some good possibilities after going through all that.
Wishing you the best as you deal with side effects.0 -
Hi there, my name is Ralanda, and I had surgery on Dec 13 and got my pathology reports back and I have been diagnosed with stage 3a high grade serous carcinoma ovarian cancer. I start chemo on this coming Thursday. I'm still processing everything as it's been happening quickly. I'm in Saskatoon, Saskatchewan and keep meeting new Dr's each visit.
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Hi @Ralanda - welcome! Glad you found this chat as there is much support here. You may want to review some of the previous posts as there are several topics and pages of coping tips to help guide and support you. There are also comments for dealing with chemo and the side effects.
If you don't have a copy of the OCC resource, you can order it here:
https://ovariancanada.org/living-with-ovarian-cancer/support-resources
It can be hard to meet with a new DR each time... depends on your province and cancer centre... often, many of them work as a team. I found it helpful to keep notes myself so I could recap what took place at the previous appointment.
Hope you are feeling well as you recover from the surgery. If you are up for it, we try to meet on Tuesdays at 7:00 PM CST in the Teal Tuesdays Live Chat topic.
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Hi, I am 49yrs mom, nurse and teacher, diagnosed with endometrioid adenocarcinoma and clear cell ovarian cancer in Feb 2016. I had surgery only and staged 1C at outset. I had a recurrence diagnosed in June 2017 to pelvis and liver, so had 6 cycles of carboplatin and paclitaxel and then radiation to my pelvis (liver spot dissappeared). Then, I had a second recurrence diagnosed Aug 2018 to my pelvis, so had 6 cycles of liposomal doxirubicin and carboplatin. Just waiting for an end of cycle CT scan to see what is next ...so far plan is ongoing carboplatin every 6 weeks or so. Have been quite nauseated with chemo, but olanzepine, amend, and ondansetron help quite a bit.
Thanks for the group support:-) j
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Hi JanCan: I hope you are healing from all the complications and I was so inspired by your courage and your wonderful attitude regarding your condition and your care. It is great to know that you have excellent post-surgical AND cancer care where you live. I wish you all the best! I was diagnosed with Stage 3B ovarian cancer and was in remission for 30 months but recurred just after Thanksgiving, 2018. Now on chemo regimen again with different meds this time. Thinking of you warmly this morning from out in Calgary
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Hello @jen_k - welcome to the chat site. Wishing you all the best for that scan and it is good that they are looking after you. Yes, those meds do help alot and sometimes I find gravol and a nap are my best friend
Wishing you all the best and do join us on the Tuesday live chats0
