Hi all I’ve not been here for nearly 3 months t... - My Ovacome

My Ovacome

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Hi all I’ve not been here for nearly 3 months time has disappeared recently. Last time here was the night before my surgery.

Deli44 profile image
5 Replies

Surgery was ok ( In hindsight ! ). total hysterectomy bilateral salpingoophrectomy .., they took my appendix and also omentum.

Histology came back as Stage 1c2 mucinous adenocarcinoma . Was suspected ( as most mucinous are ) that it was a secondary tumour from GI origin ( stomach / bowel)

I’ve had a Gastroscopy and 2 x Colonoscopy since and am now waiting on histology of a massive polyp removed .

I’m scheduled for chemo next week !

Right now I’m so pissed off Im in the brink of a menopausal/ rare cancer breakdown !!

Anyone else here with mucinous?

I’d also like to thank all the ladies here that supported me through my original diagnosis, I don’t think I’d of got through the Op without you all .

Once again I’m terrified this time of the chemo , how the type is so rare and how little info there is around the future with this one .

As always sending love to all you amazing lot .

Thanks again for your help and support back in December and thank you in advance for any offered now.

To recap my name is Adele age 44 from London

Xxx

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Deli44 profile image
Deli44
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Skyeplus profile image
Skyeplus

I dont post a great deal but I read a lot and everyone is so helpful. don’t have any knowledge of the mutinous cancer. I just wanted to send you love, a hug and lots of positive vibes for your treatment. I worried chemo but it was ok. I’m sure the ladies on here will have lots of advice for you. Good luck xxx

Hi Deli,

I'm also Mucinous. Have you considered joining Ovacome's Rare Cancer Forum. I did and connected with others who had the same sub type.

I also found the Mucinous Ovarian Cancer Support Group on Facebook that helped too.

I ha emergency surgery in Dec 21 followed by a second, completion surgery, in Mar 22. I finished Chemo in Aug 22 and was graded NED in Oct 22. First follow up last month showed still NED.

Posting my story from last year in case it's of help.

m.facebook.com/story.php?st...

One day at a time lovely... You are not alone x

delia2 profile image
delia2

I’m just sending hugs because you’ve been through a lot! I too was terrified of chemo and it mostly wasn’t as bad as I expected. There can be some blips but mostly I slept a lot because of all the Benadryl. Just take the anti nausea tablets on schedule and take something to fight constipation! Good luck!

Lowrie1001 profile image
Lowrie1001

I have mucinous im 27 , i had a 25cm cyst removed that was stuck to my bowel ir ruptured on removal.. and biopsy later showed mucinous 6 weeks later i had a hysterectomy apendix omentum removal and that all come bacm clear no evidence cancer im due soon now t do chemo

Celestialbeing profile image
Celestialbeing

Hi Adele (and everyone here), I hope you are doing ok. I am based in the USA. I had papillary thyroid cancer (BRAF V600 E mutation) and a neuroendocrine cancer. I am in the thyroid community here as well as in the ThyCa groups.

I am reaching out here because my sister had a very rare adenocarcinoma of the appendix. Her cancer is mutated with the dreadful KRAS G12V mutation. The cancer was found in the distal portion of the now-removed appendix during what was first thought to be appendicitis. The cancer was found to have infiltrated the peritoneum and mesentery, also the right side of colon, and some reproductive organs (they left the uterus so the cancer has somewhere to migrate-obviously it did not go there). One tumor has not been eradicated, instead, it grew (now 1.8cm) plus a few opacities of concern.

There is nothing that I can find that is promising here for treatment for her. I was hoping to find more info, studies, trials on the other side of the Atlantic Ocean.

I would be grateful to anyone that can provide more info.

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