Let's get started! Come and introduce yourself

KGrover

Hi @StellaMaris and welcome to the community. I am so glad you like it ! I believe there are others on the forum who have experience with Lynparza. If it is decided to go forward with this treatment, I'm sure there are folks on OvDialogue who can share their experience with the drug.

terrylee

Hi @MarieRocks I too did not have to undergo any chemo or radiation after having a 14 cm tumour removed off one of my ovaries. Mind me asking what type of tumour you had? Mine was a granulosa cell stage 1C. I too am struggling emotionally...this sounds weird but do you ever feel like you should be doing something? Sometimes I feel like I am playing the waiting game.

Niki37

Hi all. I am 37 and live in Edmonton. Here's my story. During my yearly physical in March of this year, my doctor felt a large mass on my left side. I went for an ultrasound and MRI while waiting to see the gynecologist. The mass was large and had obliterated my left ovary and the plan was to remove it whole. I had a laparotomy, bikini line incision, on September 6th and the mass was removed easily and everything looked fine. Two weeks later my gyno called me in for an appointment to tell me they found clear cell cancer within the mass which was a shock to everyone. I am scheduled for staging surgery, this time a vertical incision, in a week and must decide whether to remove my remaining ovary and uterus. I have no idea what I should do and am seeking advice.  

kastoyles

@Niki37 my tumour wasn't discovered until my surgery either. We were quite shocked as well, as none of the tests done prior to surgery indicated cancer at all. I have Stage 1C clear cell carcinoma. I had a complete hysterectomy (age 61). I went through six rounds of chemo, carbo and taxol and finished July 21 2016. My GP also recommended I get chemo as the cancer is aggressive and it would give me the best chance for survival. I'm thankful that it was discovered so early.

KGrover

Hi @Niki37 and welcome to the OvDialogue community. Deciding on the best course of treatment can be very challenging and overwhelming. @kastoyles has shared her experience and I'm sure there are others, like @jemgirljeri, who can share their experience on how they made their decision about treatment.

CurlyHair

Hello @Niki37 I am sorry to hear of your conundrum. I do not know what to say since I am not sure of your situation.  Without knowing of course the children situation.  I am thinking though that at 37 years of age you are getting close to the childless era going forward so if that is true then you may want to go ahead with the hysterectomy.  Menopause sets in of course but I can tell you that no more periods for me was not something lost.   Get the ovaries out as well.  I hope you do not find this too forward but it is something to consider.  Good luck.  

Jackie

Hello @Niki37 I’m from Calgary and like you I wasn’t diagnosed until after my surgery. In October 2011, I had what my gynecologist and I were hoping would be a fairly routine hysterectomy procedure. My cancer came as a shock even though I was aware that I had potentially serious problems—there was a mass on my ovary and my uterus was enlarged. About one week after my surgery the phone rang with the call display showing my gynecologist’s office. Of course, my heart sank in disbelief and something in me knew in the seconds before I picked up the phone. I saw him that day and the pathology report was devastating. It indicated what would eventually be diagnosed as stage IIIC endometrial adenocarcinoma of the uterus and stage IC endometroid adenocarcinoma of the ovary. I was 46 and not as young as you are, so fertility wasn’t really a concern. I wish you all the best as you face some very difficult medial decisions. 

Vivig

Hello,
I am so grateful for finding a Canadian site that I can interact with. I have been involved with FB pages and discussion groups predominantly from the US or the UK. I have learned a lot from these sites however looking forward to a Canadian site.
In late 2014 early 2015 my pap test was returned as being abnormal, I was not worried since this had occurred previously and all was well. Was sent to a specialist and had internal and external ultrasounds performed with all results returning as normal. May 2015 had sever pain in abdomen. Family doctor sent me to ER to have a CT Scan performed and was informed that I had ovarian cancer. Was sent back to specialist had same tests performed and was informed no change all looked well, but specialist performed a CA125 test and called me to say we hope we caught it in time. Well, had a full hysterectomy and was diagnosed with Stage 4 High Grade Serous Ovarian Cancer. That was June 2015 and I was 50. While reading all the stats on the internet I was convinced that I was not going to live long. With the Grace of God I am still here. I have experienced one recurrence and currently on Olarparib clinical trial. Next CT Scan is Wednesday which means I am extremely nervous. My original operation was scheduled on the same day of our son's high school graduation well nothing was going to stop me from attending the graduation so it was pushed out to July 6,  2015. The one good thing if you can call it that is that I have received and continue to receive an outpouring of love from family, friends and colleagues. Never knew how cared for I was and boy do I feel loved now. My hubby has been my rock and that means the world to me. Looking forward to meeting and discussing with you all.

KGrover

Welcome @vigvig, we are so happy that you have found this site and joined OVdialogue. Like you, often people read the stats about ovarian cancer and think the worst. Stats are one thing and hearing the stories of women living with the disease might give you another perspective. I also know many people experience stress before their CT Scan - perhaps some of them could share their experience. Welcome again!

CurlyHair

Hello @Vivig Welcome and so nice to hear you having success.  Good luck with your CT scan and it is nice to know that you have family support.  I am on my own with this for the most part but am doing OK right now.  I was diagnosed around the same time as yourself back in July 2015.  I have had one recurrence.  My biggest problem now seems to be the bowel backup on occasion.  Take care 

JaneWest

Welcome to the site @Claudia
During my 21 chemo treatments, I found that I instinctively searched out what I needed, to feel stronger and better in making it through a tough regimen. Good, nutritious, whole foods helped; lots of water; nutritious smoothies, and soups; and rest when my body told me I needed it. My number one focus was to listen to my body and do what it needed. I personally benefitted so much every day from the company and antics of my dog and cat! And of course, the friends and family who surround me. I also have two teenagers at home - boys. I just faced chemo like I do with most things, one foot in front of the other, keep going, do what I have to do. It wasn't too too bad for me. I maintained a positive and hopeful attitude. For sure, there were harder days than others. I faced many side effects, but I learned how to manage each of them as they came, with the help of my nurses and my own research. In this way, I became very knowledgeable about everything I faced. The part of chemo that I really didn't like was the medicine I got before the chemo drugs.  It's the one that makes you so sleepy, and I just don't like the feeling in my body. I asked them to reduce it, and was able to cut it in half.  Gosh, I can't even remember the name of it right now!!  The last month was difficult because I was getting tired of it! 18 weeks in a row. But when I was that close, I just kept pushing. One week at a time, and before you know it, you're done!! Best wishes to you in your chemo treatments.

Jeannie

Hi. I am from central Alberta and am 58 years old. 
I was first diagnosed in July 2014. I had had symptoms for at least 1.5 years but never thought it was anything serious.  When my abdomen filled with ascites I went to my family Dr. and he ordered a CT which found the tumours.  I went to the oncologist in Calgary and started chemo right away.  Three tough treatments, then surgery (tubes, ovaries, appendix, some lymph nodes, part of the omentum, and a some of the lower part of my large bowel). The biopsy showed “high grade serous” and I am at a stage 3. In early December 2014 I started the 18 weeks of chemo, which seemed like a long time but actually went by fairly fast. The bonus was that I wasn’t as sick as I had been with the first chemo.  (I lost 30 lbs during those!). 
I was in remission from April 2015 to November 2016!  It was awesome!  So last November I started more chemo with the last one being at the end of May 2017.  I had a PET scan in June and found out the cancer was still present, so I started a new chemo regime of Paclitaxel and Cisplatin.  I have had a terrible time with these drugs!  I have been very sick with nausea, etc and it really messed with my electrolytes to the point that after my 1st and 3rd treatments I had to be hospitalized.  My last PET/CT scan was on October 5th.  This past Monday (October 16th) I found out that the tumours are pretty much the same size.  It’s extremely discouraging to be so sick and yet have nothing to show for it.  My husband and I have decided that I need to take a break fro chemo, regain some strength and then go from there.  I will be monitored with CT’s every 6 weeks.  
The other stressor in our life is that my husband will be travelling to Saudi Arabia on Sunday to start a new job!  So, I will be going there to live after Christmas!  Fortunately my Oncologist has trained many Gyne-Oncologists from Saudi, so he will be able to refer me to one there.  
This has been a crazy week to say the least!!!  

midcanada

Hi Jeannie,
 It sounds like you have had such a difficult time lately. I am so sorry.
I hope your doctors can find a different drug that will help you...there seems to be such a wide range of drugs available now.
I will be keeping you in my thoughts.

tigerlily

Glad to have you here,@Jeannie - I hope you will find this site a steady source of support - especially if you are going to be in Saudi Arabia.  Will you be in Riyadh?

Jeannie

@tigerlily - thank you! We will be living in El Khobar (aka: Al Khobar, Khobar). 
The whole support issue is going to be very tough! I certainly hope I can still access this site!  
It sounds like you know something about Saudi? 

@midcanada - yes there are some other drugs that could be used and we will definitely be looking at those options. Thank you for your kind thoughts! xo

CurlyHair

Hi again @Jeannie.  I commented elsewhere as you will see. Please blog away if need be because I am sure somewhere will be around to comment. 

MarilynOCC

Hi @Jeannie !  Welcome to the site.  I am glad to see that you are connecting with people in different discussions and finding some input in answer to your questions.  I'm sure it will be very different living in Saudi Arabia and, yes, you will be able to access OVdialogue from there.  All you need is an internet connection .  Technology is amazing and I hope this will be a source of support for you while you are there.  It is also great that your oncologist know doctors there that they can refer you to. Does that help with having some confidence about moving there?  

Jeannie

Hi @Marilyn. Yes it does give me more confidence & peace about moving there. . Both my husband & myself put my health as a priority. If I wasn’t comfortable to go there, we wouldn’t be going. I’m very thankful that I have a great husband! 
I agree that technology is amazing and I am sure this chat room (or whatever it’s called! 😅) will be a great help to me! 

jan0927

Hello, I'm pretty new to this experience, in fact at times it still feels like I'll wake up and discover it's been a bad dream. I had surgery 3 1/2 weeks ago, hoping for a benign tumour.  I haven't received the pathology results yet, so don't know what stage my cancer is, but my gyne oncologist saw no visible cancer elsewhere, and says it could be stage 1, with no chemo required, so I'm hopeful for that. 
After reading about young women coping with cancer and also with the responsibility of children and jobs, I feel very lucky even if I need chemo. I'm 64, retired, otherwise healthy, have a supportive husband and grown children, so I have the luxury of just indulging myself if I'm feeling too sick to do anything. I so feel for those going through this with family responsibilities and job/financial concerns.

MarilynOCC

Hi @jan0927.  Welcome to OVdialogue!   So glad you found this community so soon after your diagnosis.  I hope you find good support here from other women who have been through it too.  Yes, a new diagnosis is a shock to your whole being, isn't it, with that dream like quality to it?  And it can be hard to wait for results too, when you don't really know what might be coming in terms of treatment.  It sounds like your family is a good source of support, which is great. 

We have a book called By Your Side specifically for women who have been recently diagnosed with ovarian cancer.  I would be happy to send it to you or you can order it online at:
http://ovariancanada.org/living-with-ovarian-cancer/support-resources

Did you happen to receive a copy of this book when you were at the hospital or cancer centre?  When do you see your doctor again to get the pathology report and discuss possible treatment options?

jan0927

Thank you @Marilyn, I had found the page and ordered By Your Side, did not get it or hear about it at the hospital. I will see my Gyne Oncologist Nov 16 when she travels from Hamilton to a city 4 hours from my small community for their monthly gyne clinic. (The travel so far from home was one of the most stressful aspects of my surgery, and definitely a disadvantage in this situation!) But I expect to hear the results from my GP here, about a month apparently, so hopefully soon.

chaoskitty

Hi Everyone,
I am so glad I finally worked up the courage to access this site. After being diagnosed I just didn't want to go near the Internet.

I got my diagnosis in August of this year. So far I have had 3 rounds of chemo carboplatin/ paclitaxel. I am waiting for a call from the surgical scheduling u

chaoskitty

Off to a great start I managed to post before I was finished typing.

To pick up the post I am waiting for a surgery date but I do have a CT scan booked for Nov 13th which is just around three weeks after my 3rd chemo. 

One thing the oncology resident said when she was talking about the surgery etc was that there is an 80% chance that the cancer will return but they will deal with that through chemo. 

What I really want to say is thank you all for sharing your diagnosis experiences here and surgery tips elsewhere. I know the surgery will be quite extensive from the description she provided. I am willfully positive it will be successful.

Now to fill in the time between now and then. No real side effects so far and so I am using some of the time to purge items I just don't use anymore. Donating them on to someone who can use them. 

No last thing, I live in Saskatchewan.

MarilynOCC

Hi @chaoskitty.  Welcome to OVdialogue!  I understand your hesitancy about going online for information.  You can find all kinds of weird and wonderful stuff that isn't always helpful!  But so glad you found this site and have found some good tips and information particularly as you are waiting for your surgery.  

We have a book called "By Your Side" for women recently diagnosed with ovarian cancer that is free of charge. There is information about the disease but also lots of other topics that you may find of interest including preparing for surgery. Did you receive a copy at the cancer centre?  If not, I am happy to send you one or you can order it online at: 
http://ovariancanada.org/living-with-ovarian-cancer/support-resources

I imagine that it was difficult to hear the doctor say there is an 80% chance it could come back so I love your phrase about being "willfully positive".  Can you talk a bit more about that?  What does that mean for you and how do you do it?

chaoskitty

Hi @Marilyn
Thanks for the welcome and I have ordered the digital version of the guide. 

Willful for me equals determined and stubborn so I think that is the kind of positive outlook I am striving for. When I find my thoughts straying towards the possible negative outcomes I pull myself over to the positive by reminding myself that I'm here and I am going to have a successful surgery.
"When I get the surgery it will work" is something I tell myself quite often. I really try not to think too far into the future either. One piece of the treatment at a time is working for me. I have had the chemo and no I am focusing on the surgery and being ready for that.

Flowergirl

welcome @chaoskitty...we will be thinking of you. I hope you find the resources and support that that you need.

MarilynOCC

Good for you @chaoskitty!  Sounds like you are dealing with things one step at a time which makes it more manageable.   And if things like questions or concerns come up you know where to find some help here!  Let us know when you get the date for surgery and how the CT scan goes on 13th.  How did you find the site once you decided to go online?

chaoskitty

Hi @Marilyn there was a poster for the website on the bulletin board in the exam room that I was in. 

Viperspice

     I was diagnosed with High Grade Serous, Stage 3C Ovarian Cancer on October13th, 2016. As far as i can tell looking back now i had no symptoms other than slight weight gain over a few years.  I thought this was normal late age gain.  I will be 60yrs old on November 12th. I reduced my intake of junk foods and tried to eat a more healthier diet but still maintained the same weight. I led an active life working at The airport in Restauration and meals were most commonly on the run.
    Earlier in January of that year i had a Mirena UID removed and had a bit of spotting afterwards which my Dr. said was normal. I still had lots of energy and no other pain.  In October my pant size shot up from size 8/9 to a 12-14 in a matter of a week. My Dr. did the CA125, pelvic ultrasound and finally referred me to a gyn-0ncologist. I went in and a biopsy confirmed cancer. I did 12 weeks of chemo (Carbo/Taxol)  then Hysterectomy, Omenectomy and lymphonectomy (Robotic Surgery) on February 21st.  A week later i did another 12 weeks of Chemo as precautionary measures for the minute cells remaining. Since then i have been part of a study of "Parp" inhibitors.
     I was also in a trial study involving the "Dignicap" machine which allowed me to keep all my hair. Since then i have started a card-making page so that i can help my hospital afford one of these machines so that no women needs to lose their hair from Cancer.  Unfortunately even here in Canada Insurance companies regard this treatment as being "Cosmetic".  Believe me it was more than cosmetic for me. I'm not a heavy made-up girl but losing my eyebrows and lashes was very difficult. Keeping my hair allowed me to keep my Dignity and held up my morale on those days where i just didnt feel that "Shat" hot!  Before Cancer i was a Workaholic and found that not being able to work was extremely hard to deal with. Developing a new hobby has helped a bit but i still feel pretty secluded socially and hope to return to work eventually.
After Treatment, Now what? : I'm still trying to figure that out. lol

Flowergirl

Hello @Viperspice - welcome and thank you for sharing your story! Picking up the Pieces Book By Kathy
https://www.chapters.indigo.ca/en-ca/books/picking-up-the-pieces-moving/9780813540368-item.html
offers great insights... lots of support here on the site also with the many discussion topics.