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Any Mucinous sisters out here?

sallyLsallyL
in Introductions
A little about me. I'm 34 and had debulking surgery in June 2017. A tumour the size of a catalaupe was removed. Along with my right ovary, (I had a border line tumour removed along with a salpingo-opphorectomy in 2009). Thrown into surgical menopause after June 2017 surgery, thanfully able to take HRT! Pathology came back as Mucinous Carcinoma 1C, grade 1. I'm currently undergoing 6 rounds of adjuvant chemo, (carbo only). I understand there aren't many with the same diagnosis of Mucinous, we're a rare breed. I'm always looking for others to relate to in a similar situation. Thanks! 

Comments

  • FlowergirlFlowergirl Legacy
    Hello @sallyL - welcome to the chat and thank you for sharing.  Yes, I love your topic title and I hope once others see it - if there are any with that same diagnosis, they can share here. I'll check in with my in person support group - I recall most are high grade serous, clear cell and uterine. Wishing you a warm welcome to the site and hope you can join us for the live chat on Teal Tuesdays at 7:00 PM CST 
  • GreenEyesGreenEyes
    Hello @sallyL!  I was diagnosed with Anaplastic carcinoma in mucinous ovarian Tumor in 2015 at 38 years old.  At that time, I was the 35th reported case in the world.  Not much data out there but my oncologist was very supportive and innovative.  I’m happy to share that I’ve been cancer free for 28 months now, gave birth to twins 17 months ago and then had a total hysterectomy to reduce risk of recurrence.  Always happy to hear from other who relate/share/support/uplift as they’re are not many!
  • FlowergirlFlowergirl Legacy
    Hello @GreenEyes - welcome and thank you for sharing your story. Glad to hear you are doing well and congratulations on the birth of twins!
  • AfabAfab
    Hello @sallyL, Thank you for starting this thread. I wish I had found it even sooner! After surgery in December my doctors were shocked to receive the pathology that not only was the mass rare it was a rare cancer. We do appear to be unicorns of the cancer community here with mucinous carcinoma. My planned treatment is surgery, which we did feb 24th, to go back and remove the ovary,tube, appendix, ommentum and do many biopsies in the area. I get my results back tomorrow. I’ve joined a lot of support groups through Facebook but found little relate to being this cancer presents so differently and has no widely agreed upon treatment. Was chemo presented as an option for you, or was it a must? Happy to meet you ladies!!!
  • Ingrid_CanonIngrid_Canon
    Hello Ladies I am new here.  I was very excited to see that there are others like me ... finally.  Just a little about me.  I was diagnosed May of last year with a malignant borderline mucinous carcinoma. It was removed in surgery without any need for therapy.  I have since had everything removed (including appendix).  All has been seemingly well since being diagnosed, but I am plagued with belly issues still.  Dr say it is from surgeries, but how long before it is no longer related to recuperation?   Looking forward to learning more from others in my situation.  Thanks for listening.
  • FlowergirlFlowergirl Legacy
    Hello @Ingrid_Canon - welcome to the chat site and thank you for sharing your story. 
    Yes, that is the challenge I found was, to determine what is surgery recuperation vs the disease. Over time, it seemed  to work out. I kept a log book or list of symptoms, details and concerns so that I could track and discuss at the upcoming appointments. This way it was recorded, out of my head and onto paper which was also helpful to look back on. The DR team was able to explain and put me at ease. If you are still having issues and are not feeling well, do connect with your medical team. 
    We hope you will find much support here on the site and I'll also private message you.
  • jonseyjonsey
    Hi everyone my name is Donna , I am from PEI . On June 4 2018 I had surgery to remove a mucinous boarder line tumour. It grew very fast and aggressive, within a couple of weeks it went from only being able to feel it , to making me look like I was 7 months pregnant. Before they got a chance to remove it , it ruptured and split my ovary in half . As a result they removed my ovary , tube , uterus, and appendix. Cancer was found in all except the appendix. 5 years ago I had a boarderline on the other side and at that time they only took the ovary and tube . In a couple of days I start my chemo . My doctors are confident they can get all those little cells left with chemo. So glad I was told about this group . Thank you
  • Ingrid_CanonIngrid_Canon
    Hi @jonsey I had a similar situation last year but the tumor was only found on one ovary.  I had a total abdominal hysterectomy that followed with nothing further found.  I hope that you are coping with your situation and my thoughts are with you.
  • FlowergirlFlowergirl Legacy
    Welcome to the chat site @jonsey.
    Sorry you have been through all that. Wishing you well as you recover from the surgery. We hope you will find much support here on the site and welcome you to review the topics as there are some good tips on dealing with post surgery, chemo and side effects here. 
    We try to log in together on Tuesdays so if you are up for joining us, it is at 7:00 PM CST which will be much later for you in the east. The bonus is the chat site is 24/7!


  • FlowergirlFlowergirl Legacy
    Hello @fab and @jonsey and perhaps others - hoping you can share some experience with @hope

  • ErinBErinB
    Hi @sallyL - our stories sound eerily familiar. I was a Mucinous Carcinoma 1C, grade 1, too. I'm now three years post treatment and am doing well. I had three rounds of chemo and 25 sessions of radiation. Last year I ended up having a full hysterectomy too. There aren't too many of us with this diagnosis, so it's nice to connect with all of you. 

    I have to admit to being hesitant to post on here (or even read anything) because I was worried other people's treatment plans would make me nervous about my own. Not that I'm lacking faith in my plan, but I'm now unsure why I still have my appendix and you all seem to be without yours? Hmmmm... attempting to not worry ;) 
  • Ingrid_CanonIngrid_Canon
    HI @ErinB Welcome fellow mucinous sister.  The reason I had my appendix removed was due to my pathology report.  The notes said that they could not confirm that my ovary was the primary location and to avoid any possible issues suggested that the appendix be removed.

    As stated earlier, I never had any treatments other than surgeries.  In Sept of this year I had an ultrasound with interesting information.  It appears that I have a cyst growing in my transverse abdominus.  When asked if it would go away on its own, my GP said that he didn't know as it was unusual. Like you I am not trying to read anything into it, but this is how it all started.  I had a CT scan in early November, so I should get more information soon.  Fingers crossed!
  • ErinBErinB
    I'm sending you good, strong, healthy vibes for your results @Ingrid_Canon
  • MarilynOCC ModeratorMarilynOCC Moderator
    Hi @ErinB.  Its hard not to worry when you hear stories that are a little different to yours and you begin to wonder if you have or are receiving the right treatment.  Typical surgery for a total abdominal hysterectomy usually includes removal of the ovaries, tubes, uterus, cervix, omentum, lymph nodes and any other cancer that is visible to the surgeon.  If they removed other organs like the appendix, they would have a specific reason for doing so for that particular patient.  So it is not unusual if your doctor did not remove yours.

    Hi @Ingrid_Canon.  I, too, hope for good results from your scan!
  • ErinBErinB
    Thank you @Marilyn - you've made me feel so much better. I really really appreciate it. xx
  • MarilynOCC ModeratorMarilynOCC Moderator
    :)@ErinB.  and you can always ask your doctor about it too on your next visit ....
  • ErinosaurusErinosaurus
    Hello! 33 year old who is also named Erin here! Two weeks I was told that they found invasive mucinous carcinoma in my left ovary that was removed along with a 20+ cm tumor at the beginning of October. I was told that it's a super rare type that makes up only 3% of ovarian cancers and that 75% of the time that it shows up in the ovary is because it has spread from somewhere else in the body (metastasis usually from the GI tract). So I'm currently awaiting a CT scan, colonoscopy and gastroscopy to be completed to find out more. Currently it's the waiting in health care limbo that is the hardest part...
  • FlowergirlFlowergirl Legacy
    Hello @Erinosaurus - welcome to the chat site and hope you are doing well this weekend. Yes, waiting seems to be the hardest part. So from above, it seems you are post surgery and now awaiting a treatment plan? We hope you will find much support here. 
  • ErinosaurusErinosaurus
    Flowergirl said:
    Hello @Erinosaurus - welcome to the chat site and hope you are doing well this weekend. Yes, waiting seems to be the hardest part. So from above, it seems you are post surgery and now awaiting a treatment plan? We hope you will find much support here. 
    Yes. I'm currently awaiting to see if the mucinous cancer found in my ovary was a spread from somewhere else and then go from there. The surgeon and pathologists are confident that there isn't any cancer left in my lady areas but now they need to check my entire GI tract now. It's almost been 3 weeks since I found out that cancer was found and I haven't heard about scheduling for future tests despite me calling the Image Centre, GI institute, and Gynecology Oncologist office (who referred me to get more tests) about every 3-4 days asking for status updates. I'm told there is a backlog and my case is only marked semi-urgent so that I just have to wait...The lack of urgency is rather frustrating. Just wondering if this is normal? Has anyone else experienced long wait times just to get scheduled for tests? I'm in Ottawa. 
  • FlowergirlFlowergirl Legacy
    Hi @Erinosaurus - thanks for the update. That is so frustrating the waiting. For sure stay on them and perhaps a call to your cancer navigator can help
  • Ingrid_CanonIngrid_Canon
    @Erinosaurus I am also in Ottawa and experiencing the same delay issues.  I noted with my Oncologist that if he was confident that all was removed in surgery, then things went really slow.  I had a CT Scan on Nov 2nd, but don't see Dr until late December.  I did sign up for MyChart and was able to see my CT scan results but they don't mean anything to me.  According to a visit with my gastrologist recently based on his  analysis of CT scan, the items (ie. abdominal cyst) found in my last ultrasound were 'nothing of concern'.  One thing I am coming to realize is Stage 1 sisters with chemo/radiology seem to have different treatment protocol than our other sisters.
  • Ingrid_CanonIngrid_Canon
    Ingrid_Canon said:
    One thing I am coming to realize is Stage 1 sisters with chemo/radiology seem to have different treatment protocol than our other sisters.
    Sorry I meant to say that Stage 1 sisters without chemo/radiology seem to have different treatment protocol than our other sisters.
  • ErinosaurusErinosaurus
    I recently found a very helpful Facebook Group called "Mucinous Ovarian Cancer Support Group" and have learned a lot about our silly rare type of cancer via reading about other women's experiences all over the world. Just thought I'd share! I hope this is within the rules of this message board. 
  • djapjdjapj
    What makes muscinous carcinoma rare? That is also what mine was at stage 1A, grade 1 but I’m not understanding the typing. Can anyone provide some insight?
  • MarilynOCC ModeratorMarilynOCC Moderator
    Hi @djapj.  I am not surprised that you are a bit confused about the type of ovarian cancer you have.  Over the last 20 years, research has identified the fact that ovarian cancer is not just one type of cancer but many different types and subtypes.  The basic types of ovarian are stromal,  germ cell and epithelial ovarian cancer (which is the most common type). There are five subtypes of epithelial ovarian cancer and mucinous ovarian cancer is one of them which accounts for approximately 5% of all ovarian cancers.  This is why it is considered more rare and why there is not as much information and understanding of this subtype.  For further information you might want to look at our website and also order our guide "By Your Side" which has more detailed information.  Here are the links:

    https://ovariancanada.org/About-Ovarian-Cancer/Disease-Basics/What-is-ovarian-cancer

    https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources
  • djapjdjapj
    Marilyn said:
    Hi @djapj.  I am not surprised that you are a bit confused about the type of ovarian cancer you have.  Over the last 20 years, research has identified the fact that ovarian cancer is not just one type of cancer but many different types and subtypes.  The basic types of ovarian are stromal,  germ cell and epithelial ovarian cancer (which is the most common type). There are five subtypes of epithelial ovarian cancer and mucinous ovarian cancer is one of them which accounts for approximately 5% of all ovarian cancers.  This is why it is considered more rare and why there is not as much information and understanding of this subtype.  For further information you might want to look at our website and also order our guide "By Your Side" which has more detailed information.  Here are the links:

    https://ovariancanada.org/About-Ovarian-Cancer/Disease-Basics/What-is-ovarian-cancer

    https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources
    That is actually very helpful, @Marilyn. I do have By Your Side. Now that I have your info, I’ll take a look at it again to look at my type. Thank you for all the hard work that you and your team do. I appreciate having someone in my corner that cares deeply. 
  • MarilynOCC ModeratorMarilynOCC Moderator
    You are welcome @djapj.  Glad to be of help!
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