Mucinous oc stage 1c1

[Sclare]

Hi everyone, I’m hoping I may find someone on here in/been in a similar situation as me as I am unsure what to do because the type of cancer I have is rare and there is not a lot of research to show it helps having chemotherapy. I have Mucinous and the doctors have offered chemo but said they can’t say that it will stop the cancer recurring as there is just not enough research.

[meaty]

hi there . sorry I can't say I am in similar position with mucinous. but I am 1c2 low grade and haven't been offered chemotherapy.

it's another rare cancer .that chemotherapy is less effective. wishing you luck whatever you decide . xxx

[Sclare in reply to meaty]

Hi meaty , Thankyou for your reply. Have you had any treatment yet? Did your cyst rupture? Wishing you luck too xx

[meaty in reply to Sclare]

hi yes my cyst ruptured in my first operation. which was bilateral salpingo oopherectomy. then my 2nd surgery was total hysterectomy and debulking surgery. xx

[justfiguringitout]

Hello Sclare.

I'm 43 and also have MOC, stage 1c2. My tumour had ruptured resulting in emergency surgery (27/12) to remove it, fallopian tube and appendix. I've since had completion surgery (2/3) to finish hysterectomy and have just had round 2 of Carbo/Taxol. I wouldn't have been offered chemo if it wasn't for the rupture. For me, it was about reducing the risk of recurrence from 15% to 5-10% so we decided to do it.

I found Ovacome's booklet about MOC really helpful. And their Rare Ovarian Cancers group too. Also worth checking out Mucinous Ovarian Cancer Coalition on Facebook. Connecting to others with the same subtype has been really beneficial.

I know it's scary at the minute but the good news is yours was found very early and is very treatable.

Sending love

Lisa

[Sclare in reply to justfiguringitout]

Hi justfiguringitout , Thankyou so much for your reply. I’m sorry to hear you are going through all of this too. Did all your biopsies come back clear before they decided whether to give you chemo? Mine came back clear but they have still offered to give me carbo on its own if I want it because it ruptured during surgery. I have been told there is no percentage of the chemo working so I’m just feeling so stuck on making a decision. Where did you find the ova come booklet on MOC please?

Sorry so many questions it’s all just so overwhelming.

Many thanks x

[justfiguringitout in reply to Sclare]

Hi.

If your biopsies came back clear, how did they diagnose? Do you mean that they've removed the mass and that further biopsies have shown no evidence of spread?

That was basically the situation with me. Biopsies from the tumour showed some good bits and some not so good bits. It appears that the ruptured cells were friendly but they couldn't be 100% sure that something microscopic wasn't still there.

The link is here ovacome.org.uk/mucinous-ova...

Carboplatin on its own has less side effects so hair thinning but not hair loss. Less severe aches and pains etc. That was a possibility for me at one point but chemo oncologist recommended combined.

It's a very personal choice, and there's no right or wrong. For me, I wanted to look my children in the eye, if ever it came back, and tell them we'd done everything.

For women wanting, but yet to have children, I imagine the thought process would be quite different.

Also worth looking up the rare cancer clinical talk due to take place next week I think. It's on the Ovacome site

Lisa

[Mund2121]

Hi, my diagnosis was borderline mucinous 1C2 . Tumour was ruptured during surgery to enable the surgeon to remove it. Mop up chemo was recommended, I had one chemotherapy treatment 3 days before lockdown, I was advised not to continue with chemotherapy due to the risk of covid but this did not sit well with me. I sought a second opinion from the Royal Marsden and following their biopsy of my tumour ( they agreed with initial diagnosis) they did not recommend further chemotherapy treatment . They said they would not have recommended any chemotherapy for me. Dr Susanna Banerjee at the RM is a leading expert on mucinous OC.Have a look at the posts on here by a user named Petrolhead( Fay) they are very informative.

Amanda

[Sclare in reply to Mund2121]

Hi Amanda, Thankyou so much for your response. Im so sorry to hear you have been through all of that to then be told it wasn’t even needed. I am too under RM and they have been fab so far. Just so unsure on what decision to make with regards to chemo. X

[silkycat18]

Hello Sclare. I also had Mucinous about 2 years ago. I was so lucky it was only 1a so only needed the big op. I wasn't offered chemo. I have had 6 monthly check ups where my tummy is prodded about. I have asked every time if I could have a scan for peace of mind, but always refused. Next check up not for a year. Has anyone else had so little follow up?Wishing you all well.

[Jannibags in reply to silkycat18]

Hi Silkycat! Mine was low grade serous diagnosed December 2019. Had everything removed and staged at 1c1. No chemo offered as my surgeon didn't feel I would benefit from it given my cancer type. My follow up was 3 monthly for the first year and 6 monthly since then, not sure when my gynae onc will want to change to annual check ups. She does ca125, prods my tummy and pelvic exam. I have never asked for a scan but imagine she would only probably want to do that if there was a specific worry, like raised ca125 for instance. Mine has, so far, remained stable at 5 or 6. It was 327 at the time of my op. Hope you are keeping well!❤

[Sclare in reply to Jannibags]

Hi Jannibags thankyou for reaching out. What hospital was you under for your treatment? Did your cyst rupture during surgery? My ca19.9 has always been around 4 even when the cancer was still inside me. They have said they will keep me on watch and wait if I decide not to have the chemo…it just such a horrible decision to have to make. Do you mind me asking your age too? I hope you are keeping well too 💕

[Jannibags in reply to Sclare]

Hi! I had my surgery at St Mary's in Manchester but referred back to my local hospital in Bury for follow ups. And, yes, I understand that the cyst did rupture. Not surprising really as it was a biggie - 25cm 😱! The majority of the tumours (I had one on each ovary, the other one was smaller)were borderlines but a low grade serous had started to put in an appearance on one of them! I came out a stone lighter - every cloud as they say!😊 I was aged 67 at diagnosis and I am keeping well so far!🤞 The fear of recurrence never quite goes away though does it? Take care of yourself❤!

[Sclare in reply to Jannibags]

Wow that is very big, mine was 12.5 cm so I can only imagine the discomfort it must have caused you. Glad you are doing well, it will never go away it’s just so hard knowing whether to have the chemo or not when they say it’s completely my decision. I have had fertility sparing surgery and undergoing fertility treatment now in hope if I can get it done chemo is still an option if I decide to go for it. You Take care too xx

[Jannibags in reply to Sclare]

I know what you mean, I'm glad my surgeon was clear that she didn't believe I would benefit from chemo and I was fortunate to be at such an early stage. I'm indecisive at the best of times, honestly don't know which way I would've jumped if I'd had to make that decision. I do wish you the very best of luck. Let me know how you get on. xx

[Sclare in reply to silkycat18]

Thankyou for your message silkycat18 . Where are your appointments if you don’t mind me asking? I’m sorry to hear you have been refused scans…that’s the sort of reassurance we need really. When they did the op did they remove everything or just your ovary? Hope you are well xx

[silkycat18 in reply to Sclare]

Thanks for reply. I go to Luton an Dunstable hospital, Bedfordshire. I had the full debulking. Before op surgeon thought it was stage 3 so I was so relieved when it was only stage 1. I am 69, and only symptom I had was a period like bleed which was a shock at my age. I worry if I have a recurrence that I won't have any symptoms. I hope you keep well.

[Sclare in reply to silkycat18]

So lucky you had that bleed and found it so early. I wish you lots of luck for the future x

[Petrolhead]

HiPetrolhead here (Fay). As Mund2121 says please do a search for my previous posts as you should find quite a bit of info. You can also search for Mucinous in the topics in the Ovacome section and again it should bring up the previous times it has been discussed.

Remember that posts from people with other sorts of OC are usually not relevant to mOC because it act differently. It acts like bowel cancer.

I was diagnosed mucinous 1C1 5 years ago and expect to be signed off later this year.

Then 1C was expected to have chemo but now it is usually watch and wait. As I did not have any symptoms this was not for me so I elected to have chemo.

I did do a lot of research at the time and chemo was only thought to be about 30% effective. But who knows if that % is helpful. Only you can decide.

Please feel free to PM me if you have any questions. If you PM me your email address I can forward some info that I have if you are interested. There is not much as you say as it is rare so little research is done it because they cannot get the number of ladies for trials.

Best wishes

Fay

[Sclare in reply to Petrolhead]

Hi fay Petrolhead Thankyou for your message. It’s taking me some time to get use to this website but I’m getting there. Yes please if you wouldn’t mind sending me some more info. My doctors haven’t been able to give me a percentage on whether it could work having chemo or not so as much info as poss would be really great. Thankyou Clare x

[Petrolhead]

No problem- I will send what I think may help. I have made a note of your email address.

You should edit your post to remove your personal email address as this forum is open to the public and I would hate you to have unwanted contacts from undesirables!

There have been incidents of this happening. That is why I have amended my profile to not allow following of my posts.

Best wishes

Fay

[Sclare in reply to Petrolhead]

Hi Fay, I have edited Thankyou so much!! And it’s really fab news for you five years free, really happy for you. Best wishes