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
-
Hello,I am Trudy from THE Netherlands..60 years old now... I was diagnoses borderline 20 years ago.. 16 years after THE operation and chemo I had a very swollen leg.. THE cancer affected my lymphe .. now after chemo and Avastin doxorubicine I still have THE swollem leg and iT hurts.. I wear support stocking.. They say that an operation in that area THE groins not be possible..IT Will make iT worse for tje rest of THE body... I am dutch so my english is not very good...
0 -
Hello @dutchy - welcome and thank you for sharing your story... the magic of the internet connects us all!
From your message, it seems your diagnosis was many years ago, your surgery/treatment more recently...other than the support stockings, is your health care team able to provide other support or treatment for the lymphedema?
Sorry, I am not sure of your current status, are you still in treatment? Thank you again for sharing.0 -
I stopped treatment 6 weeks ago.. I was so tired...had immunotherapie.. something is blocking my lymphe.. Operating is THE last option..On fysio therapie now and stockings.. But walking or standing hurts..0
-
calcified lymphe glands... that is the
problem I have.. in my whole body0 -
Hi @Viperspice Welcome to OVdialogue! I suspect a lot of women on the site can relate to feeling a bit lost at the end of your treatment, particularly if you are used to being a busy, working woman. As you say, "Now what?". When you were diagnosed and during treatment, most people are busy with appointments, visits to the cancer centre, treatment etc. But when all that is finished, you can feel like you are at loose ends. @Flowergirl mentioned a great book called "Picking Up the Pieces", which deals with these exact feelings. I think it is also great that you are fund raising re the hair loss machine. I have not heard of this before but know that many people would appreciate it.
Reaching out in this community is also a good way to begin to feel less isolated. There may be other discussions and comments that you can relate to like How can friends and family help, books and resources, Using writing, Teal Tuesdays - a live online discussion 1x week, and even the anxiety discussion where people have posted lots of pictures of their pets.
Have you received a copy of By Your Side, a guide for women diagnosed with ovarian cancer.? You can order on our website at: http://ovariancanada.org/living-with-ovarian-cancer/support-resources
You may also want to see if there are any face to face support groups in your area. Here is a link to find out:
http://ovariancanada.org/events-support/find-local-support-groups
What kind of support do you have around you from family and friends? Do you find it difficult to reach out?
0 -
Hi @dutchy . Welcome to OVdialogue. I'm sorry that after so many years after your original diagnosis and treatment you are having such difficult problems. I am not familiar with the condition you have but it sounds very painful and difficult to cope with. I hope that the physiotherapy and support stockings will help alleviate some of your pain. Have they also provided some pain medication?
0 -
Finally tracked down my pathology results by phone last week, after more than 6 weeks waiting, but I was afraid it was too good to be true until my follow up appt yesterday. It was Stage 1a low grade serous... feeling incredibly lucky. I know it's not a guarantee, with a 1 in 4 chance of recurrence, but feel I'm getting off very easy (no chemo, just ultrasounds every 6 months) when so many of you have been through so much.
One question...Did anyone here who was also post menopausal, experience a renewal of symptoms after surgery? I had years of mostly hormonal migraines over menopause, and find I'm having them again, presumably from losing that last little bit of estrogen. My gyne oncologist seemed to think this was possible. If anyone else experienced this, how long did it last?0 -
Hi There - I was diagnosed about 2 1/2 years ago with Stage 2A - I know I am incredibly lucky to have my diagnosis early. I had an almost complete hysterectomy (my good doctor left me my cervix) and a bilateral oopherectomy and removal of the cancerous mass and then had 6 chemo treatments (paclitaxel and caboplatin) with follow up every 6 months with physical exams. My oncology team here in Alberta has been amazing as has been my family doctor, who was the one to take my early symptoms seriously. They all agree that I have a good prognosis but regular check ups are essential. I do live with chemo related neuropathy in my feet and lower legs which is treated with Pregabalin. Unfortunately its side effect has been weight gain which I am trying to manage. Even after 2 years post-chemo I still struggle with energy levels and have ongoing depression, which is also being treated. I have amazing support from my husband, our family and our friends for which I am very grateful. Looking forward to being part of this community.
4 -
Hi @jan0927. Good to hear that it is stage 1a! You must be relieved! If you have to have cancer at least it was caught early. I can't comment on your headaches but it does seem logical, particularly if your gyne onc that it was possible. Hopefully, they won't last too long.
How has this experienced impacted you?0 -
Hi @FionaB60. Welcome to OVdialogue! So good to hear that you have had such good care from your health care team and your family and friends over the last couple of years. Your family doctor sounds like a real gem - hang on to her
Its too bad that neuropathy, weight issues, fatigue and depression are remnants of your treatment but, again, it sounds like you are addressing these issues and being treated for them.
How do you cope with these ongoing issues? Do you have any tips that you could share with other women who might be dealing with similar things? You might want to check out other discussions to see what other women have shared too.1 -
Hi There, Helene here in NS. Just diagnosed in May with clear cell carcinoma ovarian cancer. Was originally staged at 1c but since I now have liver mets I think that puts me in stage 4
No response to platinum based chemo ( 5 cycles) and now on an immunotherapy trial with durvalumab and trimelumimab. Next CT on Dec 6, fingers crossed. Looking forward to fellowship here. 0 -
Hello Birdvet, sorry to hear about your issues. I will say I do not think the doctors restage very often once they have staged. To me it does not matter the staging. I would try not to focus on that too much. Have you have the BRCA gene testing done as that gives doctors more info for treatment options. Good luck.0
-
Hi @Birdvet. It must be quite a shock to go from stage 1c in May to discovering liver mets in such a short period of time. And tough to learn that there was no response to the platinum drugs. Good that you were able to get into an immunotherapy trial and hope that the CT scan has positive results for you. Glad to see that you connected into the discussion on Immunotherapy too.
Did you receive a copy of our guide, By Your Side? I can send it out to you or you can order online here:
http://ovariancanada.org/living-with-ovarian-cancer/support-resources
How have things been with your family and friends with all the news about your diagnosis, treatment and now the clinical trial? Do you have a good source of support? Of course, you will find support here too - so glad to have you a part of the community.0 -
Hi @CurlyHair, I know they don't change the staging...but I also know I'm not at 1C and with spread out of the pelvic cavity I'm Stage 4. They told me I was stage 1C after my first CT scan....but said I had a liver cyst and a kidney cyst. I said " prove to me those aren't tumours" and asked for an MRI. They weren't going to give me an MRI because I was "not symptomatic" but they failed to understand my persistent nature. I got the MRI and not only was that liver "cyst" a met....but there were 4 more. So I think my staging was incorrect. Like you said, staging doesn't matter but I certainly dont have the prognosis of a 1C.
@Marilyn, yeah it was all quite shocking. I do have "by your side" but I understand there's another one too that I'd like to get...more aimed at recurrences. Friends have been good, family not so much but that's a long story. Hope to soak some knowledge and kinship from this group as we all deal with this.
@red1976 thanks, I'm pretty freaked out about my CT. Will be in 2 days but prob won't get results till next week.Fingers crossed and trying to stay positive.0 -
Hello Birdvet. Thank you for the clarification. Now I understand. It seems the doctors misdiagnosed then. My thoughts are with you for your CT scan.0
-
@Birdvet Just realizing you're from NS. I am as well! It concerns me that you had to push so hard to have things clarified. I'm sorry you had to go through that. Was the 1c after an initial surgery? Did you have a staging surgery? I just had my staging surgery and wonder if I need to press for scans as well? That's not in the current plan.0
-
@red1976 I had a "routine" hysterectomy for " ovarian cysts" by a reg gynecologist and the cancer was found then. I asked for staging surgery which the oncologists said they didn't need to do because I was asymptomatic ( most ovarian cancer is asymptomatic till its too late!) and because I had a "clean" CT...which wasn't clean. So I never did have a staging surgery and once they found my liver "cyst" was a tumour they said it was too late. Wonderful. Fight for everything, you have to. Ask for CT scans and if they are vague push for an MRI. You have to push..sad but true. They say they won't scan unless you are symptomatic. Most of this is only symptomatic when it's too late. Why the reluctance to scan? Are they afraid of giving me cancer? I'm a veterinarian too and I know the limitations of these scans...be pushy..no one else will advocate for you
1 -
Hi @Birdvet. Yes, I had clear cell ovarian cancer. In January 2018, I will be 15 years cancer free. I feel very grateful. You have been a great advocat for yourself - it is unfortunate that this is required when we are sometimes at our most vulnerable and unwell. I do hope the scan went well yesterday. I will be sure to send you our second guide, "Still By Your Side". Let us know how you are doing....0
-
Ty. I should know next week and don't mind admitting I'm scared to death. Fingers crossed!
0 -
@Birdvet maybe try to do something fun and enjoyable this weekend to help you get through the next few days ....0
-
Hello ladies, I am Cathy from Quebec. I was diagnosed in May 2014 at the age of 63. I had two surgeries followed by 12 rounds of chemo I was then told that I was cancer free. I was on cloud 9 for nine months. I was knocked off my feet when I was told that my cancer was back because I did feel very well. My second recurrence was seven months after another round of Carbo-Taxol. Third recurrence was only five months and they decided to treat with Carbo-Caelix once every four weeks and when these treatments were followed by a scan it showed that my one tumour had grown and three others had not changed. I still remained positive when I started a new treatment . At the end of November my oncologist said that he felt I had no quality of life and he suggested I begin palliative care. That is where we are now. I live every day the best I can . I am surrounded an amazing family and wonderful friends. What is debunking surgery?
i appreciate having this group.0 -
Hello @oldmaster. As you state that you have had two surgeries in the past I assume that would include the term debulking surgery. It is about going in and removing as much cancer as they can. What exactly is your doctor talking about when he is TELLING YOU that you do not have quality of life? That is for you and your ability to function to decide that. No? Why is he sounding defeatist if you are not? Why is he not talking to you about clinical trials or if you are BRCA gene positive it opens other drug options. You need to decide and push back if you can and are up to it. If you have a GP try to talk to them about it to help advocate since they would understand it all better. Maybe talk to your family for suggestions.0
-
Oldmaster. I wanted to add that if it is up to the doctor to tell me about the quality of my life they could turn around right now and say well CurlyHair you are single, on ODSP funding with little family and friends around, not being able to do much without funds so you have no quality of life and we should give up. Ridiculous.0
-
Thank you CurlyHair, it would appear that my oncologist knows nothing about me personally. When he told me that I had no quality of life I told him that he was wrong and that I had more things to do and more love to give. He also sent my new doctor a note describing my condition in a very sad way. My palliative doctor told me that I did not seem at all in the condition that the oncologist had described.
i did have genetic testing and I tested negative so I was not a candidate for clinical trials or new meds such as Avistin. When my palliative doctor took over my case I had to sign off as a patient of my gp.0 -
Oldmaster. Please enquire as to other drugs available. You do not need the gene mutation to receive some of them. Either doctor should be willing to help you I think. Take care .0
-
Hi, I’m leslie from Calgary. Was diagnosed in June 2010 at the age of 49 with stage 3C High Grade Serous. Had surgery (hysterectomy and debulking) then 6 cycles chemo. Was in remission for 24 months. First recurrence February 2013, surgery and 18 cycles chemo. In remission for 18 months. Second recurrence February 2015, surgery and 12 cycles chemo. Was On trial drug (Rucaparib) for 10 months then 3rd recurrence October 2016. Surgery not an option this time, planned for 6 cycles chemo. Only completed 3 because of serious allergic reaction for the second time. In remission now since February 2017. Follow up is every 3 months now. Next one end of January.
Its been a long Road, I’ve learned so much, met so many amazing women and said good bye to too many. I have a great support system with an incredible husband, loving parents and supportive friends. I’ve continued to work throughout the entire 7 years as it was a great distraction. Havent ever been part of a support group but feel the need for some contact as the worry about upcoming appointments can be difficult to overcome.
I look forward to connecting with you all!1 -
Hello liesel. Welcome0
