Any Mucinous sisters out here?

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

  • 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 
  • 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!
  • Hello @GreenEyes - welcome and thank you for sharing your story. Glad to hear you are doing well and congratulations on the birth of twins!
  • 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!!!
  • 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.
  • 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.
  • 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
  • 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.
  • 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!


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