New to group MOC dx

[blackdhalia]

I've been dx with Mucinous Ovarian cancer and I am feeling somewhat doomed.I hear the prognosis is poor and the chemo Carboplatin and Pacitaxol have limited effect.

I'm 68 and feel this is the beginning of a very unpleasant journey to my demise in the not to distant future.

I had CRS and HIPEC at Basingstoke Peritoneal Malignancy Unit when it was initially thought that I had Pseudomyxoma Peritoni which comes from the appendix.

Surgery removed all visible cancer but so I had a CC0 score and PCI 13.

However histology came back as MOC of GI type.

Although I didn't lose many organs or have a stoma I still had extensive mets to my omentum and the krukenburgs tumour was huge 18cm x 15cm x 12cm and had attached to my rectum, so I ended up with lower anterior resection there, that has caused me horrible bowel problems that are now resolving well.

I would be grateful to hear from any other MOC sufferers and their experience.

This has all been a terrible shock and been going on since i discovered the tumour last june.

I am afraid to consider future plans as I feel I will not live long.

I am also dealing with an acrimonious divorce from my covert narcissist husband who left me in February. Now having to deal with selling my home as well.

[Katmal-UK]

Yu are dealing with so much (understatement) but believe me you will deal with it. Don’t write yourself off. I was diagnosed at 48 with stage 3b OC HGS BRAC2 and told I had a couple of years, I’m now in my 18th year and NED for over 11 years. You are stronger than you think. I went thru a divorce, bought a new house etc. U can do thisx

[Fluffyjumper]

As Katmal-UK says, you are stronger than you think and you can deal with this. I’m sure that it’s overwhelming, but try and focus on what you can ‘control’, such as the house sale. Consider counselling to help you deal with all this. It’s also important to have something to look forward to, even if it’s something small, such as a meal out with friends, a day trip, a trip to the theatre, you need to be ‘normal, old you’ every so often.

You are doing so well recovering from surgery and the shock of diagnosis.

[candyapplegrey]

Hello and welcome. I know little about MOC but it might be useful for you to join the Rarer Cancers Group meeting as they might know more. Horrible to have to deal with divorce (although sounds like you're well rid) at the same time but you have already overcome so much. I have clear cell and endometrioid, both rare and less responsive to chemo. When I survived three years and asked what my original prognosis was I was told I'd already surpassed it. Hang on in there.

Do you have anyone that can come with you to appointments? I find this very useful as they can ask the questions you forget. Sometimes you need a tag team.

Best of luck! xx

[Alibee2]

Hi

I too have MOC diagnosed in 2016 but after debulking surgery & 6x Carboplatin only achieved NED from Jan 2017 - May 2023 before I had a recurrence. I know MOC is not a positive diagnosis especially in terms of dealing with recurrence however we are all individuals & everyone’s road is different. I am single with my only family now a grown up daughter who I don’t really see since she married so I tried to be positive & use the limited time I thought I had to do things I would enjoy - I took a lump sum from a pension and did several cruises & bought a small camper and got a dog.

The recurrence was a shock & led to removal of part of my liver in Oct 2023 I then had Carbo again which this time failed so are now looking at a GI regime (which can often be more effective than an OC regime for MOC) but awaiting testing of the tumour to decide on the best one.

So don’t despair - there can be years in front of you!

Re the divorce etc in the UK MacMillan nurses can often refer for free counselling or Maggies Centres often offer this - I’ve been through an acrimonious divorce & having to sell the marital home myself it’s a lot to deal with & a trained listening ear can really help!

There are a couple of specific MOC groups on Facebook for support.

[blackdhalia in reply to Alibee2]

I won't have enough funds to buy another house and I'll be homeless with cancer Husband is also trying to do me out of half share in the equity in the house. He is a vile narcissist.

[Emcee71 in reply to blackdhalia]

This is horrible. I'm so sorry you're going through this. It might not seem like it, and I know that renting isn't ideal at all, especially after being a home owner. BUT from my POV I have really struggled as a home owner with a massive mortgage with 17 years left on it aged 53. I went £15K into debt while I was ill and on chemo and I don't know how on earth I'm going to pay it back. I am looking at renting the 2nd room which is currently my office but actually also having to look ahead to selling said house once my fixed rate is up because my industry is going to the dogs, work is extremely scarce and frankly, I'm not sure I can work as hard as is needed in my industry anymore anyway (it's a minimum 50 hour week). I have no pension either. It crossed my mind many times that if I had been renting when I was ill, I could have at least get some help with it rather than struggling like I still am? But perhaps you are covered for that. huge hugs and strength to you.

[blackdhalia in reply to Emcee71]

There is no mortgage on our property.I would have to rent and with a dog that's not easy.

[Emcee71 in reply to blackdhalia]

right ok

[SopSinger]

So sorry to hear you are going through so much cr*p. I echo Fluffyjumper's advice - control, counselling and a hefty dose of self-care! Sending hugs!

[blackdhalia]

I have had a CT scan today and there appears to be two spots ( Haemangioma possibly ) on my liver. I've been scheduled for an MRI scan on Thursday.

One anxiety after another.

[Herts4321]

Women with Ovarian Cancer taking the generalised beta blocker (the one for anxiety, not a beta blocker for heart conditions) "Propranolol" alongside those 2 chemo drugs, in a study survived significantly longer. People who stay as active as they can and exercise also survive a lot longer after treatment. Private prescription in the UK for propranolol available from clinic158.com/ It's not very expensive I don't think.

canceractive.com/ is also a great website to help you with diet and other advice.

Google says about Propranolol:

Yes, propranolol, a non-selective beta-blocker (NSBB), may improve survival rates for ovarian cancer patients:

Improved survival:

A retrospective cohort study found that patients who received NSBBs during chemotherapy had a longer overall survival than those who did not.

Improved quality of life:

A prospective clinical trial found that adding propranolol to chemotherapy for epithelial ovarian cancer (EOC) improved quality of life and decreased inflammatory markers.

Anti-cancer effect:

Propranolol has a significant anti-cancer effect on ovarian cancer cells, reducing their viability in a dose- and time-dependent manner.

Cell cycle arrest:

Propranolol induces cell cycle arrest at the G2/M phase, leading to apoptosis.

Hope this helps.

[blackdhalia in reply to Herts4321]

That is interesting