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red1976

@canadianwarrior my story is very similar to yours and being in the same province, i know we would have the same team in Halifax. I also had a rupture but I also had my cyst growing on the outside of my ovary. I did have to have chemo. 

I now wait and worry, as many of us here do, that it's not all gone or that it will be back. We are here to support each other through that. Feel free to connect through direct message if you like. 

canadianwarrior

Hello, it’s so great to be able to be in contact with someone close in location to me!! My cyst was also growing on the outside of my ovary but still no chemo. This weight loss is worrying me. Thank you for reaching out! 

red1976

@canadianwarrior My tumor was a Grade 2. My understanding was that if it was a Grade 1 I would have escaped chemo. Do you know your tumor grade? 

I am also close to Antigonish county and have relied heavily on our local cancer navigator. She has connected me with a wonderful counsellor to help me navigate life after cancer.

The weightloss would be upsetting to me also. It's so hard to not know why things are happening. If something doesn't feel right, keep asking questions and press until youre comfortable with the answers.

Bridge1

Hi my name is Bridgette, I’m 38 years old and live in Saskatchewan. Im new here and I’m so glad I found this site. I had a hysterectomy just three months ago, they took everything but left both  my ovaries. They did remove a cyst that was on my left ovary. Now I know why I was in so much pain on that side. At the time of surgery they didn’t think it was cancer. Fast forward to my six week checkup post surgery and my gynaecologist tells me the pathology report showed something they didn’t like. So they send me off to the Cancer Clinic next. What I’m being told is that it is a non invasive form of cancer. But yet it was a serous tumour. They said no treatment is necessary, but for peace of mind I could have another surgery to have the left ovary removed as 5% chance of it coming back. Would rather have it removed than keep going for ultrasounds every 6 months to keep an eye on it. They tell you it was cancer but yet it was borderline yet they say it was a subtype. I feel like I’m lost somedays... guess I’m still actually trying to figure out if or believe that I actually was diagnosed! 
My husband and the nurse both say it was cancer or they never would have sent me to the cancer clinic, my family doc says it preliminary, the cancer doc told me to go home and enjoy my ovaries and I hope I won’t have to see you again! (those were her exact words)
So when I sign life insurance papers or want a medical history for when or if my kids need down the road, do I put down ovarian cancer?  I feel like I’m torn in all directions. I guess a lot is riding on my next surgery to have the left ovary removed and have it checked for cancer. Also wondering if I have the left ovary removed, should a person just get the right one removed right away too. Or leave it so that I don’t have to be on any hormone replacement therapy? 
Any feedback or support would be greatly appreciated. Thanks for reading my story! 

CurlyHair

@Bridge1 It sounds like you have BOTs.  Borderline tumours are usually mostly benign and why they cannot invade tissue.    I have included a couple of webpages to look at for some explanation.

https://www.cancerresearchuk.org/about-cancer/ovarian-cancer/types/borderline

http://www.ovariancanada.org/About-Ovarian-Cancer/Disease-Basics/What-is-ovarian-cancer#

I personally would ask doctor about removing ovaries as you do not need them.  You do not necessarily need HRT but it is an individual thing.  

Good luck

  

red1976

@Bridge1 I'm sorry youre going through this. So difficult. You mention kids....I am 41...diagnosed at 40...i had genetics done because i have 2 little girls and some types of ovarian cancer have risk to be genetic. I would inquire to your oncologist. Otherwise, you should do whatever your gut tells you to do and what will help you move forward in this journey.

Dee

Hi Everyone.  My name is Dina (Dee).  For 2.5 years I had  a large mass on my right side and was way to scared to go to my annual because I knew something was really wrong. I am also very scared of hospitals and machines they use for testing.  Fast forward...I was referred to an oncologist as there was a high priority that I had cancer on a large mass of 26cm.  On Feb 13 18 I went to surgery to take the mass out along with my ovaries, fallopian tubes and cervix.  Unfortunately, they found another mass on the left side the size of a large orange.  They submitted everything to pathology.  On March 27 I had my appt for results and tested positive for a rare type of ovarian cancer and took the necessary steps for chemotherapy.  My first chemo appt I had a severe reacton to Taxol in which I went into anaphylaxis shock.  They had a bit of a hard time bringing me through.  It was the scariest experience I have had.  I then did my six treatments with Carboplatin only...it has been going well....two left.  I do worry about what happens next and if it is really all gone.  I live in Ottawa....if there are people who want to keep in touch let me know.

Dee

@KarenL.  Hi.  My name is Dina and I am 49 years old and I also live in Ottawa.  I got diagnosed with a rare type of Ovarian cancer in February 2018.  It is scary...I am current going through my 6 treatments.  Had a bad reaction with Taxol where I went into anaphylaxis shock.  I now am doing 6 treatments with Carboplatin only.  I have 2 treatments left.  I am a little worried about what comes after.  Let me know if you want to touch base and I will share my email.  I am new to this and also looking for people to share and get information with as well as friendly support.

Bridge1

red1976 said:

@Bridge1 I'm sorry youre going through this. So difficult. You mention kids....I am 41...diagnosed at 40...i had genetics done because i have 2 little girls and some types of ovarian cancer have risk to be genetic. I would inquire to your oncologist. Otherwise, you should do whatever your gut tells you to do and what will help you move forward in this journey.

Bridge1

@red1976 Thank you!

red1976

@Dee welcome to the board Do you mind sharing what rare type you had? Mine was endometrioid. 

I also had a bad reaction to the taxol....not anaphylactic but rash and airway involved. I ahd it happen during #5, tried again with #6 with lots of steroids and still I reacted. 

I hope the last 2 are uneventful for you!

Flowergirl

Hello @Dee and @Bridge1 - pleased to have you joining us. Thank you for sharing your stories; you have both been through a lot. We hope you will find much support here on the site. If the time frame works for you, we hope you can join us on Tuesdays at 7:00 PMCST for our live chat.

@Dee - wishing you all the best to get through the last chemo sessions and it is good they figured out to manage the reaction for you.

@Bridge1 - in regards to the comment from the DR s about "non invasive form of cancer. But yet it was a serous tumour"  - for the life insurance papers or medical history, you will want to ask what is in the doctors files, you will want to know the official medical diagnosis, which should also be in the pathology report and ask for your copy of it. 

As you have had the post surgery follow-up and have already been to the cancer clinic, did the medical team give you a follow-up plan or next course of action, for the additional surgery?

 I will also private message you both. 

Dee

Hello Everyone.  My name is Dina or Dee and I am new to this site.  I did sign up a few months ago but am having a hard time figuring it all out.  I am winging it.  

That being said...I truly appreciate the feed back from all you ladies that reached out.  It is a difficult time and changes your thinking about what really matters and makes you happy and smile.  I have to say that I have a positive outlooknin my journey...but was a little different at the beginning.  Once I was diagnosed...I was so shocked that I missed a lot of what I was being told.  To this day that is a blank.  I am very fortunate to have a supper supportive hubby.

I am looking forward to doing the Ovarian Cancer Walk of Hope on Sept 9th in Ottawa as it is needed to make sure a lot more information is available to women going through the same journey.  I also look forward to meeting other ladies on that day.

To all the beautiful and courageous ladies on this site.  Stay positive, chin up, smile and the rest will be a little easier.

Dina

Ingrid_Canon

Hi @Dee I have registered for the walk in Ottawa as well.  After my diagnosis  (May 2017) and my treatment (surgeries) I convinced myself that the diagnosis was wrong.  Where I have been living well and happy, I have these 'dark under currents' that I can't
shake.  I hoping that if I connect with others like me that eventually those 'dark under currents' will subside.

Dee

Hi @Ingrid_Canon.  Hope we will cross paths.  Hang in there.  Stay positive and enjoy life.

Ingrid_Canon

Thanks @Dee.  I see my GP today and hoping we can get some answers on some lingering health concerns.  One day at a time.  Take good care of yourself as well.  Maybe we'll cross paths.

Flowergirl

Agreed, one day at a time...sometimes I found it helpful to focus on the next 15 minutes only when that was all I could handle! Wishing you all better days for sure.
@Ingrid_Canon and @Dee - hope you are able to connect with each other and those at the walk this September.
If you wish, You can use the private message feature to exchange details and it will not show on the public site.

terrylee

Welcome ladies I think you'll find there is a lot of support on this site

Flowergirl

Hi @terrylee - just us tonight!

jsullivan33

Hello @Ingrid_Canon and @Dee , nice to see some ottawans on this dialogue. I have been in treatment for OC since Sept. 2017 at the General Campus  Not sure if you have made it over to the Maplesoft Centre of the Ottawa Regional Cancer  Foundation https://www.ottawacancer.ca/ . If not, do have a look at the services and drop by for an introduction session. Or just show up for any of the offerings posted in the calendar, including a monthly support group for gyne cancers (“the Gyne Gals”), which restarts in September. This Sunday there is a food truck event on the patio, I plan to attend. Most activities are free of cost, including cancer coaching with a professional, other programs have a modest fee e.g. I took an 8 week course on “Brain Fog”, very reasonable. My sense is that cancer survivors have strong support in Ottawa. Wishing you both best outcomes and hope we willcross paths at the Maplesoft,  regards,  @jsullivan33

Flowergirl

That is some great support and resources there in Ottawa - thanks @jsullivan33 for sharing!
Hope you are all able to connect @Ingrid_Canon and @Dee

Ingrid_Canon

@jsullivan33 thanks for the info about Maplesoft, I will look into it.  I am actually living in a rural area south of Ottawa, so I don't get into town unless I have doctor appointments or procedures.  @terrylee @Dee if you would like to walk together on Sept 9 let me know by private message.

Flowergirl

Hello again @Bridge1, @Ingrid_Canon @canadianwarrior @Dee
Hope you have found all the information here helpful.

Ingrid_Canon

Yes thank you @Flowergirl.  I like to be  prepared and find the discussions very frank, helpful, insightful and uplifting to name a few.  Wonderful group of brave women!

Flowergirl

Wishing you all the best and glad you have found the support here!

Dee

Hello Everyone.  I have not been on in a while.  The good thing is that my chemo phase is now complete as of last friday.  The bad thing is that once again I had an allergic reaction to Carboplatin with 8 minutes left to the end of my chemo.  Mon  Wed were very rough days....but yesterday and today have improved lots.  How is everyone?

Shelley417

Hello group!  I was scheduled for a hysterectomy with my gynecologist May 1st thinking I had a huge fibroid and lo and behold it ended up being epithelial ovarian cancer stage 1a, epidermoid subtype.  My tumor was 20 cm in diameter and I did NOT have a surgical staging procedure since it was my gynecologist who did the surgery and was caught off guard.  At first he thought it was a stromal tumor and once it went through pathology it was changed to the above.  My gynecological oncologist recommended just surgery and observation since the tumor was well encased, not attached to anything, the pelvic wash came back clean and my chest CT was also clear.  So, why am I still worried that maybe I should have gone through some chemo or something?!?  She did say that even a recurrence with my type of cancer is 95% curable, I am still scared as crap.  Anyone else have this same stage and type that can make me feel any better?!?  Thanks for any words of wisdom.......

Nancy1

Hi Shelley,  I’ve learned over time that you only do chemo if required....I was staged at 2c and have had a number of reoccurrences.  I wait until the tumors become an issue before do chemo to by time......obviously my opinion only....good luck with whatever you chooses to do

terrylee

Hi @Shelley417 I had a different tumour but only required surgery for treatment as my type of cancer didn’t require chemo or radiation so long as it was in stage 1. I also had scans and an endometrial biopsy to confirm the stage. Despite that and even though I trust my cancer care team, I felt for a long time that I needed to do something, like I was just waiting for a recurrence. Is that how you are feeling too? After time, the anxiety has lessened thank goodness. This site has helped a lot and also connecting with other survivors has helped me to relax. I hope that overtime you too will feel more at peace with your journey too 🙂

Shelley417

Hi @Nancy1 and @terrylee.  I appreciate your comments and insight!  You are right terrylee.  I am kinda waiting for a recurrence or something to happen.  I used to work in a cancer center around cancer patients and heard so many stories about recurrences and battles with cancer that I am just waiting for the other shoe to drop that I think I have to run the gamut of treatments to make sure every possible cell has been killed off, you know?  I never had a surgical staging so that sits in the back of my mind that maybe I should have had that done?  I know it would have been horrible because the pain of the hysterectomy was awful for me and the incision would have been the same if not larger.  I have an issue with pain medications and they were not managing my pain very well so I was too scared to have that done even though my oncologist said it really wasn't necessary but she would do it if I wanted it done.  So, should have I had it done and not been a baby about the pain?  Uggh!!  I can continually second guess myself....its so difficult!!! I think I just need to talk to more people and give it more time I think.  Being a cancer survivor is still such a new thing for me.