Ruptured endometrioid

red1976

I am a 40yo mom of 2 little girls. I was followed for years for a cyst on my left ovary-thought to be dermoid. It started rapidly growing in the summer. Oncology was consulted and they deemed it benign based on my Ca125 and scans. On Oct5th o had it removed, along with my uterus for dysfunctional bleeding. I thought I was all done. On Oct16th my GP called at supper and blew my world apart. It was a grade 2 endometrioid adenocarcinoma. I had further surgery yesterday to remote my other ovary and partial omentectomy. I am currently a stage 1c, grade  2 and hoping I stay there. My oncologist says I need 6 cycles of carbo/taxol. During removal of the tumor it was ruptured as the surgeon believed it to be benign. My oncologist says chemo is needed due to this as well as the fact of it being grade 2. 

I see so many with endometrioid have surgical treatment only. I am so angry my tumor was purposefully ruptured so my surgeon could complete laproscopicaly.  Has anyone else dealt with a low stage that was advanced with rupture?

AlbertaKat

I'm so sorry - it's awful to know that if they had treated it like potential cancer and took some care, the outcome would have been different.  There seems to be no accountability when doctors cause harm.  I've lost friends with similar experiences.
I've been having symptoms for close to a year that have been gradually worsening over the last couple months.  I was diagnosed with 2cm complex cyst on my right ovary in October - after I finally stopped ignoring the symptoms and went to the doctor.
The follow up ultrasound is showing 2 cysts. I've asked for a referral for a second opinion because my doctor is still not concerned.  I asked about a voluntary hysterectomy as I'm close to menopause anyway and it's affecting my quality of life.  She seemed amused by my audacity.
It is stories like yours that make me insist on not waiting despite the complete lack of concern from my doctor.  

red1976

@AlbertaKat I regret not pushing harder to have the cyst out sooner. But everything, tumor markers, MRI, ultrasounds .... all suguested it was benign. The surgeon said the type I have, endometrioid,  is like a devil in disguise. Advocate for yourself absolutely! 

MarilynOCC Moderator

Hi @red1976.  I, too, am sorry to hear about your experience and I certainly understand your anger and shock.  Dealing with a second surgery so soon after the first one is also not easy, physically as well as with responsibilities for a young family.  If you are still in the hospital, you may want to ask to speak to the social worker and/or psychologist on the ward to talk about your reactions to all this and also to enquire about practical support or resources that may be available to you when you go home.   

We have a guide available free of charge for women recently diagnosed with ovarian cancer.  It is called By Your Side and you can order it online here:  http://ovariancanada.org/living-with-ovarian-cancer/support-resources

What kind of support do you have around you?  Are you able to ask for help from family members and/or friends?

red1976

@Marilyn Thank you so much for reaching out. I am truly blessed to have the support of my parents who live down the street and have helped me with my kids beyond measure. And the ironic part of my life? I am an oncology nurse so I have the advantage of at least knowing what to possibly expect with treatment. This is ofcourse a double edged sword. I am trying to channel the grace and courage I've seen in so many of my patients. 

Pumpkinpi

Red1976, something very similar happened to me almost a year ago.  My ovarian cyst happened quickly, and in the space of 2 weeks was as large as a soccer ball.  I ended up in emerg, and the gyne did the surgery laparoscopically which necessitated rupturing the cyst.  Which of course released and spread the cancer cells throughout my abdomen.  6 weeks after the initial surgery, I too had the second surgery to remove everything else and do the staging.  Without the rupture, I wouldn't have needed chemo - 6 cycles of carbo/taxol.  
Its so hard to not be bitter and angry and dwell on "if only".  I made a conscious decision to not let those feelings take over.  I needed my energy for the fight ahead.  And for my 7 year old.  Having young kids and going through treatment is a challenge.  But kids are so resilient, and in a way their needs are often direct and immediate, so it kind of forces you to live in the present.  It's great that your parents are so close, I'm sure they'll be a great support for you and your girls.  Just as I am sure that you will also have the grace and courage to get through this and come out the other side.

red1976

@Pumpkinpi Our stories sound so similar!! I was 6 weeks from 1st to 2nd surgery as well. I am trying to do as you did and use my energy to get through this and not waste it on anger. But at times its hard.

I'm glad to hear your story as I wondered if chemo is too agressive in my case but it sounds like it's protocol for a rupture. 

How are you coping now post treatments? Does life ever feel "back to normal"?

Pumpkinpi

@red1976, it is OK to get angry.  And you should be, because it's not fair.  But you can't let it take over your life (which it doesn't sound like you are).  
Unfortunately, my cancer is platinum resistant so my plan is to get back on the chemo and radiation train.  But we're going to Disney first, and we're all so excited.  I doubt we will ever return to pre cancer normal, but we will adjust to our new normal and will continue to find the joy in every single day.  Be here now is the best advice.  Nobody knows what the future holds, but I AM here NOW.  And that in itself is such a wonderful gift.

red1976

@Pumpkinpi I am so thankful to have found this site and to have found such amazing women such as yourself. We can all be here for each other with our "new normals". Enjoy every single magical moment of Disney!!! 

Jackie

It’s good to see a discussion about my type of ovarian cancer. I was diagnosed in November 2011 with the endometroid type. After my second abdominal surgery, my oncologists ultimately diagnosed me as stage IIIC endometrial adenocarcinoma of the uterus and stage IC endometroid adenocarcinoma of the ovary. From what I understand this kind accounts for only about 20 per cent of ovarian cancer cases and generally has a better prognosis than some of the other types,

red1976

@Jackie I was told by the surgeon that endometrioid is rare and this was her rationale for rupturing it internally.....the way it presents appears completely benign. She called it "devil in disguise". 

Happy to meet a fellow "rare type"

Jackie

@red1976 Our stories are quite similar. Before my surgery we knew that there was a mass on my right ovary and that my uterus was enlarged. However, my gynecologist thought there was only about a 20 or 25 per cent chance that it was cancer. The endometroid cancer came as a shock to both of us even though we were aware before the surgery that I had some potentially serious problems. My OBGYN did an excellent job considering the rather difficult circumstances. When the pathology report revealed cancer, he immediately referred me to an oncologist at the Tom Baker Centre where I underwent additional surgery and had chemotherapy treatment.

 

Pumpkinpi

@Jackie, I also had uterine cancer at the same time.  Were you tested for Lynch Syndrome?  I'm waiting on my results for that.

Jackie

@Pumpkinpi  I’ve been tested for Lynch Syndrome and the results came back negative. I was extremely relieved because from what I can discern being positive for the condition would have significantly increased my risk of being diagnosed with cancer again. Of course, for people with Lynch Syndrome their probability is especially high for colon cancer. I wish you good luck and I hope that your test results are negative too.

jemgirljeri

I had a similar experience. Mine wasn’t purposely ruptured, but did accidentally during surgery. The endometrial tissue is sticky and was attached to other parts. What would have been stage one, turned to stage 1C, possibly 2. As a result I needed chemo. Honestly dealing with the side effects of chemo has been harder than living with the cancer. However I am grateful that the cancer was caught so early. I am very sorry you are going through this, but I hope knowing that you aren’t alone in this experience will help. 

red1976

@jemgirljeri thank you for sharing. I saw your intro and see you didn' have further surgery. I had to have further surgery and removal of the other ovary. I'm wondering if age was part of deciding factor as I'm 41 and not too far from menopause. How about you?

Did you to carbo/taxol? That's my protocol. I start Tuesday and I'm getting very nervous.

MarilynOCC Moderator

Hi @red1976. You've been through a lot in the last couple of months and now about to start chemo!  I can understand your questions and anxiety!  Typically, the first chemo drugs that a doctor would use for ovarian cancer are the carbo/taxol combination.  This can vary, of course, but these 2 drugs are usually where they start with treatment. 

Also surgery is standard protocol - full abdominal hysterectomy which usually includes removal of all reproductive organs, cervix, omentum and possibly some lymph nodes. So you had this surgery in 2 stages as it was only after the first surgery they made the diagnosis of cancer.  I doubt your age was a factor in the decision for the second surgery as much as the confirmation of the cancer diagnosis.

I hope your first treatment yesterday went OK.  Let us know how you are doing.