Rare ovarian cancer and other worries

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Hi all,

I dont really know where to start, so here's a quick outline of my journey so far.

oct 23, I collapsed with severe abdominal pain
Had a CT scan and a 9cm "cyst" was found
By December 23 it 40cm and had my right ovary removed, the cyst had burst before operating
Feb 24 I was diagnosed with a rare mucinous ovarian cancer, which is slow growing, but non responsove to chemo. I was told I'd have check ups every 3 months and that of it cane back anywhere, surgery was the treatment
June 24, I had a folow up. Endoscopy, colonoscopy and CT scan ordered. Endoscopy and colonoscopy where clear, CT scan showed anl new cyst on my left ovary
PET scan was done in July, and I had the results last week. This shown the ovarian cyst we already knew was there, some activity on my sigmoid colon (on the outside) and small activity in my breast.
Booked in for a mammogram and biopsy on 12th August
Booked in for surgery (full hysterectomy, and either shaving the colon or colon surgery with potential stoma)
Chemo will start after, and I'll also be going through surgical menopause (I'm 33)
Will obviously need to wait for the breast results to see if I can have HRT, or if it will affect what chemo I can have

I guess I have many questions, why has this happened, how do I tell my parents (I haven't told them about the diagbosis yet) and why is it in 3 places. I am currently diagnosed as stage 1c2, but petrified this is going to change to stage 4 after surgery. I dont want to die. I have the nost supportove partner amd my 2 kids (12 and 10) are aware of the ovarian cancer (they're both currently doing ok). Anyway, I cant get myvhead around being so "ill" when I'm the fottest and strongest I think I've ever been.

I wish everyone well.

Thanks

SEM.24 1 month ago

Hi Katie, I’m so sorry you find yourself in this situation, so young with a rare type of ovarian cancer. I am a lot older with a more common type , high grade serous, but I can relate to how terrifying the diagnosis process is and sharing the news with loved ones is far from easy I know. It sounds like you have many questions about the cancer. When I was diagnosed I was allocated a named specialist nurse and a macmillian nurse who I could call. I found this so helpful, in appointments my head was often in a spin and only after wards thought about questions I needed answered . I know it’s not easy, but there is a lot of support out there and it is truly amazing what can be done. There are others charities out there with online communities that specialise in ovarian cancer. Ovacome has a group for young women and a group for rare cancer . They also have helpline numbers. Target ovarian cancer is another charity that offers support and information.I know I haven’t really answered your questions, but like you I was fit and well when I was diagnosed and found the shock so overwhelming. You have already gone through many tests and procedures, you will find strength you never knew you had . So far you have been staged 1c2 , and there is every chance surgery will have positive outcomes. I recently had extensive surgery including removing cancer from outside of colon which was successful. Be kind to yourself and try to take one day at a time. Take care xxxx

Katie123 1 month ago in reply to SEM.24

Hi SEM. Thank you for your message. I'm just starting to learn to reach out. Until now, I've kept it pretty much to myself, and tried to get on with it. Soon realising that thats no longer sustainable. I hope your journey continues to be positive. Wishing you all the best xx

SEM.24 1 month ago in reply to Katie123

And you Katie , definitely reach out it reduces the feeling of isolation too . One tip , if your researching on the internet much of the data is out of date and remember to search for positive stories too , there are lots there . Xxx

Positive vibes 1 month ago

Hi Katie. I too have the rarer muscinous cancer. Mass on ovary removed in Nov 21 with full hysterectomy and appendix removed.

Discomfort on my left side in Nov 23 which resulted in debulking surgery to remove all visible cancer which had spread. Spleen also removed during surgery.

I had 6 x chemo sessions from Jan to May this year. I was told muscinous cancer is not always responsive to cancer but my CA125 marker has continued to decrease.

I did have an ultrasound scan done 4 weeks ago as feeling discomfort again. I get my results tomorrow. Just wish there was more information and research into muscinous cancer. We are really in the dark with this.

I wish you all the luck in the world with your treatment going forward xx

Katie123 1 month ago in reply to Positive vibes

Hi positive vibes. It is a worrying time, I hope your results come back all clear tomorrow! Amd hopefully after surgery, I'll be in a good place, too xx

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