new diagnosis - probable mucinous ovarian cancer

[cavebaby]

I've just been diagnosed with probable mucinous ovarian cancer. I had post menopausal bleeding and was sent for an US scan which showed a probable endometrioma and thickened uterine lining. My CA125 was 5 and my consultant thought OC was unlikely but sent for an MRI just in case. Meanwhile my hysteroscopy showed a benign polyp.

So I was blindsided when at my review he told me I had probable mucinous OC and at best a borderline ovarian tumour. I've now been referred for a CT chest, abdomen and pelvis with a hysterectomy, oophrectomy, appendix and ommentum removal booked.

I've reading (I know - bad idea) and am feeling a bit lost and not quite sure what to do next. I have too many questions which I don't have answers for yet and logically I know I won't till after the CT and staging surgery - but I want to know now so I can plan what next and not have this uncertainty.

Any tips for dealing with the waiting?

[Fluffyjumper]

It’s a shock and I know it’s difficult dealing with the unknowns. My way of dealing with this was to try and get as fit as possible before my operation and plan for after it. I found that planning and being busy helped take my mind off it and reduced the worry to some extent as I felt that I had some control. I got comfy clothes for hospital and at home after the operation, booked my dog into kennels, cooked and froze healthy meals, bought a book to read in hospital and whilst recuperating at home, selected an on-line course to do whilst off work, arranged a couple of small treats such as a trip to the theatre and lunch with friends for the weeks after the operation. I even planned walking routes from 5 minutes to 2 hours long for the 6 to 8 weeks after my operation. My operation was 2 weeks after my first test, things happened very quickly.

[cavebaby in reply to Fluffyjumper]

Thank you for the reply, I'm already in the planning - but mostly for work so will start on home next. I agree the being busy is better as its stops me thinking too much about things. I think I will copy your doing an online course for after the surgery - something to look forwards to and also keep me busy!

[cavebaby in reply to cavebaby]

p.s. hope things are improving for you and your surgery was successful

[doodoolatrice]

I'm really sorry you're having to deal with this and can only reiterate what Fluffyjumper has said. I felt really well in myself physically so I focused on keeping busy, cleaning the house from top to toe, writing endless lists for hubby (kids were 9 and 14), and as this all happened in November I did all my xmas shopping, wrote my cards and wrapped everything. By the time I went in for my op I felt a bit more in control if that makes sense. Once you've had your op they will have a plan for you and you will focus on that. The waiting and uncertainty is horrible so try and fill your days if you're able to. Big hugs Kerry x

[cavebaby in reply to doodoolatrice]

Thanks, sounds like you are a few months ahead of me. I'm also feeling well in myself so it all feels a bit surreal. I agree keeping busy seems to be the key- but I may skip the cleaning! My girls are a bit older at 12 and 16, so I think some lists for them are in the offing.....

I hope your surgery went well and things are improving for you

Thanks again and hugs back to you, Louise x

[wendydee]

Hi,

So sorry you’re going through this worry. The waiting is definitely the worst part. Don’t read Dr Google!!!!! If you want reliable info look at the fact sheets and info on the Ovacome Website and/or the Target Ovarian Cancer website.

It sounds as though f your gynaecologist is on the ball. It will be very early stage, I’m sure, even if it is ovarian cancer. I had a similar experience and I’ve been absolutely fine for the last 20 years. You’ll get past this waiting part soon. The only hard nuts to cope with this are:

Keep busy; try to plan a little treat (even if it’s only me-time) each day; look forward to a walk each day; eat healthily to build your body up for the op. Mine wasn’t anywhere near as bad as I feared.

There’s info on the Ovacome website about preparing for a hospital stay.

Try to stay as calm as you can….mindfulness meditation is a lifesaver for a lot of us.

Love Wendy xx

[wendydee in reply to wendydee]

sorry for the typos where it doesn’t make sense in my reply (my predictive text is on overdrive) 😳

[cavebaby in reply to wendydee]

ah the joy of predictive text! mine keeps correcting mucinous to mutinous - I think I quite like it!

I'm an AHP so have been avoiding Dr Google, but the temptation is to Dr research paper Google - which is really not good!! I'm trying to keep busy especially at work with sorting out handing over all of my patients, so that helps. It's the evening time when I over think, so will start planning my little treats then.

thanks so much for the reply, its really good to hear for others who have been through the same thing - I'm a typical AHP and don't like this side of the table!

[Mothbag]

Just wondering if you've had your CT and a date for your surgery yet? My operation is next week, similar procedure to yours. My CA-125 is in normal range but MRI/CT features are concerning. The consultants think it may be mucinous borderline or possibly malignant. They plan to do a frozen section during the surgery.

The waiting is very difficult, especially not knowing the diagnosis yet. As the days have passed by, it has become easier. For me it helps to research so that I can understand medical terms better and mentally equip myself for what the different outcomes might be. Also I got some nice things for my hospital bag and planned what to do during recovery.

I hope you get good news about your CT and surgery

[cavebaby in reply to Mothbag]

Hi Mothbag,

Thank you for the reply. I had my CT last week and saw my consultant today and it was good - confirmed as only in the ovary (as far as they could see). I've been booked for surgery on the 16th. He is fairly sure it is malignant, so its good its confined to one place.

I agree its been easier as time has gone on, I'm also getting my head around the terms - I'm an AHP but this is outside of my skill set so currently reviewing staging and what each option means - I like a plan!

I've also gotten some nice things for the hospital bag and am planning on learning dressmaking post.....we will see how that goes!!

Hope all goes well for you next week and you get the best outcome possible,

Louise x

[cavebaby in reply to Mothbag]

Hi Mothbag,

I've been thinking of you this week and hope all has gone well with your surgery xx

[Mothbag in reply to cavebaby]

Indeed it has gone well, thank you 😊 Still in hospital but no complications and frozen section suggests borderline. How have you got on with your op?

[cavebaby in reply to Mothbag]

Good to hear the frozen section suggests borderline. I'm not in till Thurs for mine, we have been away for the weekend - planned pre diagnosis but a nice treat leading into next week.