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Shelley

Hi everyone, I’m 50 and have no diagnosis. I’ve been struggling with gastrointestinal issues for a few years and have been feeling generally unwell in recent months. I’ve had colonoscopies and an endoscopy with no answers. My recent bloodwork also showed markers for inflammation. My doctor had me do an abdominal and pelvic ultrasound on Monday. I found the pelvic to be quite painful on the right side. Today (yesterday) I received a call that there is a small cyst. I need to go for some bloodwork and see my doctor again. I’m just feeling rather nervous since a lot of my symptoms seem to align with ovarian cancer. For example, I keep on thinking I’m getting a UTI. I know that I’m getting ahead of myself. It is only a small cyst, but here I am at 4;30 in the morning unable to sleep and googling. Anyway, thanks for listening. 

Gabrielle

Shelley you hang in there!  We all seem to get ahead of ourselves especially when we are awaiting to see our doctor or get results. Try to keep yourself occupied and stop googling and do something relaxing. Obviously your doctor is very thorough and be reassured that here on Ovdialogue we are to listen to you anytime!  You take care!💙

Shelley

Thank you. 

Flowergirl

Hello @Shelley - welcome to the chat site and we are glad you found us. Sorry you are going through all the stress of trying to get some confirmations. 
We are here to help and support you. There is lots of good information on the chat topics.

There is also a lot of information on the net that can be questionable so it is best to look at reliable resources.
And the trusted resource can be found here:
https://ovariancanada.org/About-Ovarian-Cancer/Detection

Perhaps you can show and discuss with your doctor and medical team - push for a plan to rule out Ovarian Cancer. Sometimes a cyst is just a cyst and yes, you are your best advocate. 

Sending you all the positive vibes. 

Shelley

Thank you. 

Jenny1962

Hi everyone. My name is Jennifer, I am 56 years old and on Sept 5 2018, I was told that I most likely have ovarian cancer, that I needed a complete hysterectomy and debulking and after pathology confirms type and stage, 6 rounds of chemotherapy. My symptoms prior to diagnosis were vague, mostly digestive (which I had for all my adult life) but a new discomfort near my rectum.  My surgery was done on Oct 3. Unfortunately I was left with nerve damage to my left leg caused by compression on the femoral nerve during the surgery.  My gynaecologist oncologist admitted that this is sometimes an unavoidable occurrence. She said it would resolve in about 4 months and I’d say I’m 90% restored. My type of OC is stage 3 serous, high grade 3 ovarian cancer. The cancer had spread from the Fallopian tube to both ovaries, the surfaces of my bladder, rectum, diaphragm and liver. I have completed my chemo and now am in that strange place of waiting. A follow up exam is booked for May 2019 and I’m sure bloodwork and a scan of some kind will be scheduled soon after.  I have had amazing support from family and friends through this journey. But my faith in God is what really keeps me upright and standing.  At first I avoided all literature and support groups. I was given books on living with cancer but I wasn’t ready to “go there”.  But during my last chemo at Royal Victoria Hospital in Barrie Ontario, a lovely volunteer sat and chatted with me and gave me a pamphlet about this organization. I’m so glad we met and I’m so thankful to have this amazing resource. I’m very frustrated that OC receives such little funding for research. We have mammograms/self exam for breast cancer, Pap smears for cervical, but nothing for this disease.  I hope to join the many voices of women wanting that to change. 

kastoyles

@Shelley - my story is quite similar to yours. I have IBS, but it didn't feel quite the same as it usually did. I was going through a stressful time at work and my doctor and I thought maybe once I retired, the IBS would settle down. But then I started to get pain when I urinated and we started to investigate. I had a pelvic ultrasound which showed a 6mm mass on my right ovary. We then did an MRI and a referral to the gynecologist. After consultation, a hysterectomy was scheduled. The pathology showed Stage 1 Clear Cell - I had no indication of cancer prior to surgery - though when I heard about the mass after the pelvic ultrasound - I knew it was cancer. The tumour had breached and possibly leaked cells into my abdomen. The recommended course was six rounds of carboplatin/paclitaxol - I finished chemo in July of 2016. My CA125 remains between 8 and 10. The next follow-up appointment is in April.

I spent sleepless nights worrying about surgery, chemo, recurrence and additional cancers. In Nov 2017 I had genetic testing done and found that I don't carry the markers for colon, ovarian or breast cancer. My mind eased considerably. It doesn't mean I won't get them, but I'm not genetically predisposed (even though my mom had breast cancer).

It's a frightening journey, and one that tests our strength and resolve. I'm now three years past my original diagnosis, feeling good, and looking forward to our 35th wedding anniversary in April. You are in the right place for support, @Shelley, don't be afraid to ask and share - we've all been there and know what you are facing. Hugs!

Shelley

You you are so sweet to reach out. 

I saw my doctor today. I have a 1.7 cm cyst on my left ovary, but overall it doesn’t seem too concerning. I was surprised given all my discomfort is on the right side. Other things are going on, such as a “bulky” uterus and diverticulitis, which may be causing the discomfort. However, my platelets are high and some other blood tests are odd. 

I did bloodwork for CA125 and LDF today and will be anxious for the results. 

My doctor is also referring me to a hematologist. 

Nothing going on is very alarming, but I don’t feel well. All of these symptoms are playing tricks on my mind. I think I could handle being sick, but the idea of telling my three kids that something might be wrong is what really scares me. 

Flowergirl

we hope you are doing well and find some great support here @Shelley

Flowergirl

Hello @Jenny1962 - welcome to  the chat site and thank you so much for sharing all that has happened to you.
If you are around tonight - we are on the chat site live now for a few minutes.

Flowergirl

we hope you can get the support you need and yes, what you need changes over time.
If you do not yet have a copy of the OCC support By Your Side - you can order it here:
https://ovariancanada.org/living-with-ovarian-cancer/support-resources
And yes, we all want that screening test tool developed... frustration and anger that there is not a reliable one yet
The Walk of Hope is a great event held every September to educate and support and join together so all women can benefit.

balbab68

Hi everyone, I am Baljeet from Brampton, ON. I am 50 years old, married. Recently(2 weeks ago) diagnosed with Ovarian cancer. Its a large tumor along with fluid in my abdomen and around lungs. Oncologist has decided to do chemotherapy for 3 cycles followed by surgery and chemo again for 3 more cycles. I am not aware about the stage. I am feeling very scared. 

Flowergirl

Welcome to the site @balbab68 - sorry to hear you are dealing with this. Hope you are comfortable today and glad you were able to connect with your medical team with a plan. We are here to support you as best we can. It is understandable to be scared and do you have some in person support people?

We hope you will find much support here on the site. There are many topics and you can read about our stories if you search back in this topic or if you select a user name - their bio may be posted there and you are welcome to do the same.
If you were not given the Ovarian Cancer Canada resource yet, you can order it free here: https://ovariancanada.org/living-with-ovarian-cancer/support-resources

I'll also private message you.

Michellev

Hello! I am a 38 year woman who was diagnosed with fallopian tube cancer in January 2018.
I blogged my journey here: https://michelletiffanypynevachon.wordpress.com/

Coles notes: I had a tumour that presented itself in Dec 2017 and grew very quickly. It was removed in January 2018 and the cancer diagnosis was confirmed. Full hysterectomy performed. During the surgery my ureter was nicked and I had a nephrostomy bag from February to July 2018. Did chemo from Feb - June 2018. Had an adverse reaction to paclitaxel so they switched me to docetaxel with the carboplatin. In July they attempted to repair the ureter but ended up just removing the left kidney. At that point they saw no cancer left over - yay! Remission.

Had my follow up in January 2019 and my CA 125 levels were back up to almost one thousand. Had an abdominal/pelvis scan which revealed nothing. Pushed for a chest scan, which revealed something. Enlarged lymph node in the right armpit (axilla). I had a biopsy on March 15th and now I am awaiting results.

I am going a little crazy today - which prompted this post - hello! Every single ache and pain that I am experiencing I am relating to a cancer recurrence. I could just have a cold. My hips could hurt because I went running yesterday. Etc etc. OR it could mean that the cancer is back.

Flowergirl

Hello @Michellev - welcome to the chat site.
Thank you for sharing that link. 
Understandable for the anxiety - hoping all the best for you for sure and you don't have too wait much longer.
So admire you for pushing for the chest scan.
Here to support you and do you have access to inperson support?
On a personal note, I find busy hands helps the mind - whatever can bring a few moments of peace

Michellev

Thank you

My family and friends are very supportive, but sometimes it's nice to be able to talk to people who "get it" ya know?

love2run

Hello,  I am a 58 year old woman who was diagnosed with stage 3b ovarian cancer last April (2018).  I had 3 rounds of chemo followed by surgery and then 3 more rounds of chemo.  I am currently in remission however I am very frustrated over not being able to get back to my fitness routine and the fact that I have daily headaches and tire out fast.  My last chemo was in November so I figured I should be back to normal by now...

Flowergirl

Hi @love2run - welcome to the chat site. Good to hear you are now through the chemo and trying to get back into the fitness. Yes, it can sure be frustrating when the mind wants to do one thing and the body tells you another.

As everyone is different for treatment and recovery, it seems to just take time to develop a new routine. Celebrating mini milestones certainly can help putting the frustration into another perspective (it took a long time to recover from the surgery and the chemo for me). 

Our Cancer Centre offers post treatment physiotherapy (yoga sessions and more) - perhaps your location can assist you as well 

I'll private message you.

Flowergirl

Hello @newbieme - you are welcome to post your story here as well as in you bio if you wish.
You'll see there are 13 pages here so it is worth a click back to page 1 to see all our stories 
Welcome and we hope you are doing well. 

Afshan_DB

Hi everyone! I am new here, having been diagnosed with ovarian cancer in April of this year. I'm 36 y.o, married, with a lovely 4 year old daughter, living in Ottawa. My case is extremely rare, and I am hoping to connect with someone who might have a similar story. 

The short version of my story is that 10 years ago I lost my ovaries due to recurrent ovarian cysts that started to look dangerous, but were never malignant. So been dealing with menopause since before I was even 30. Last year I thought I hurt myself at the gym, and a general surgeon diagnosed it as an incisional hernia due to all my past laparascopic surgeries. During surgery in March of this year he fixed a small hernia in my abdominal wall, but found a large tumour attached to it. It was ovarian in origin. I had a second surgery at the beginning of July, which removed another tumour and margins, plus my belly button (who needs one anyway I guess?). Pathology has linked my current cancer to my ovarian removal in 2009 - so it appears what likely happened was laparascopic tracking ,where some cells were left behind between my abdominal wall and skin during surgery. They seeded, but luckily grew very slowly over time. I'm about to start four months of chemo, followed by radiation. 

There isn't a medical literature on how to treat me, so my case is being handled by a team of people, who have consulted the Ontario tumour board and various rounds. So I would love to be able to connect with someone who might be going through a similar experience, since it's hard to find someone who can relate. 

Thanks for listening!!

Flowergirl

Hello @Afshan_DB.. thank you for posting your story... sorry you are dealing with this situation. 
There are several topics on this site that we hope you may find helpful in coping with the chemo / side effects / emotional concerns. Glad you have the support of the medical team looking after you.

Flowergirl

Hello everyone- welcome to September.
If you are new to OVdialogue, welcome. You can post your story here and/or on your bio page.

Flowergirl

Welcome @MamaJacks @kelseyp - you are welcome to post your stories here or on your bio page.
If you search back through the pages (wow we are at 13 now) you can read other women's stories. 

Flowergirl

Welcome @Joan113 - if you choose - you are welcome to post your stories here or on your bio page.
And If you search back through the pages (13 total now) you can read other women's stories as well as messages of support. 

ssajwani

Hello!

My name is Shellyza and I’m from Ottawa . I was diagnosed last September at the age of 30 after a whirlwind emergency surgery related to an ovarian torsion. The diagnosis came a month later - 1c high grade ovarian cancer. Since then, I’ve had several surgeries and six cycles of chemotherapy and I went into remission in February 2019. I’ve just returned back to a gradual return to work as an oncology pharmacist at the Cancer Centre (the same place I was treated), which is also a unique experience. I’m still adapting to life as a ‘young adult’ ovarian cancer survivor , great to meet you all. 

Flowergirl

hello @ssajwani -welcome to the chat site. Thank you for sharing your story and your journey back to work.
How are you feeling now and coping with the changes?
Do you have access to an in-person support group in your area?

Camper62

As I sit reading so many inspirational stories it reassures me I am not alone in this journey and I need someone to talk to.
I found myself in emerg on July 1, 2019 no longer able to endure the pain of a bloated abdomen.   It was "suspected" that I had cancer.  Two weeks later it was confirmed that I had Ovarian cancer and would undergo surgery within 3 weeks and start chemo in September.  I was in shock - looking back I wonder what my doctor thought of me - I was pretty much unresponsive to her.  How was this happening to me?
Fast forward to today - December 21 - I have made it through 5 of 6 cycles of chemotherapy and I find myself more anxious as the end nears.
What will be next? How long until a recurrence?  What are my chances of never having one?  I feel I need the support of someone more now than ever - my family and friends have been incredible but I have spkoen to no one with this same experience.  I found this site - maybe I'll find a connection even with one person.  I am 57, a daughter, sister, wife, mother, grandmother and a full time employee on sick leave (stressing about returning to work).
Thank you for reading this.

MarilynOCC

Hi @Camper62. Welcome to OVdialogue - I’m glad you found us!  There are lots of women on this site who have been where you are right now. It is scary to hear “You have cancer”. Suddenly you are dealing with surgery , chemo etc with hardly time to think. I think it takes a long time for the shock to wear off. Coming to end of treatment is also a time when people can get anxious. We have a webinar on the website addressing fear of recurrence that you may find helpful. Here is the link:
www.ovariancanada.org/living with ovariancancer /webinarseries

bluesky

Hi, I had a ct scan in November and not in a million years did I think I had anything seriously wrong with me. After the scan I had a biopsy and then saw the my cancer doctor. She said they couldn’t be sure if I had high or low density serous ovarian cancer and as they are treated differently I needed to have another deeper biopsy. I met with the doctor again on Dec 30 and I now know that I have high grade serous ovarian cancer stage 3, possibly 4. I’m due to start chemo by the end of next week, will have 3 cycles, then an operation and then some more chemo. It’s all a bit overwhelming, but I’m trying to be positive. I’m lucky to live in a country like Canada where cancer treatment is excellent.

MarilynOCC

Hi @bluesky
Welcome to OVdialogue. Sounds like you have had a rough couple of months. It is always a shock to hear “you have cancer”.   It is overwhelming. What a way to usher in a new year!  There  is a lot of information and support available to you on this site and through Ovarian Cancer Canada. I encourage you to read some  of the discussions - for example - preparing for surgery. Our guide called By Your Side can be ordered online or through our office. I will be back in the office on Monday if you would like to talk on the phone. 1-877-413-7970 x231. How has it been discussing all this with your family?