Fat belly? No. Ovarian Cancer belly (pt 2)

[TwitterQueen1]

The story of my ovarian cancer discovery is here

This is such an important health issue - there's a reason why OC is called the 'silent killer'. I really want more women to be aware of what few symptoms there are (I wasn't).

This is my story. I hope it's a long one.

[eatyourveg]

Hello TQ I was having investigations at the same time as you - had my original op in the summer hols and thought no news was good news but 2 weeks ago they rang (day before we took ds3 to uni) to say I needed to go back for more surgery.

Had my second op on Wednesday and yesterday was my first day at home. The district nurse is coming in every day to give me the blood thinning injection and they tell me that it will take 2-3 weeks for the final staging. Ovaries and tubes went in the first op, this one was uterus, cervix and omentum. Have followed your posts all the way through but hadn't liked to post before as mine is very early stage. Mine was caught by luck while scanning for suspected and confirmed gallstones.

Wholeheartedly support everything you are doing to raise awareness. I am hoping to not need chemo - apparently its not terribly effective with my subtype until it gets more aggressive, just swallowing tons of tabs instead. Ds2 who has asd has been quite anxious and written up a drug schedule for me, seems to be his life mission at the moment to see I stick to it religiously. ds1 is in charge of washing and drying my hair and that is really really lovely especially as I know he hates all things medical and I have a bloody big bandage on my neck where they put a mainline in. DH managed a roast dinner for us today and ds3 has just rung from uni requesting video evidence that I am ok and still as loopy as ever.

[TwitterQueen1]

Hello eatyourveg Lovely to meet you! Your Ds's sound lovely. I have 2 DDs at uni who give me instructions from a distance.

Can I say it's even more important that you do post with early stage info? This is the critical bit - helping people understand that the faint twinge or grumble or change in bowel habit etc, really is worthy of a doctor's appointment?

Your story is just as important - if not more so - as mine.

And it's also encouraging that you may not need chemo (though this should not be feared, it's more of a PITA than a disabling burden).

[LoniceraJaponica]

Thanks for the updates TQ. Wishing you well and those if you who are on the same journey

[eatyourveg]

All my symtoms were incidental that I put down to the menopause kicking in. I'm 52. Sudden urgency for a wee, bloated tummy, feeling full quite easily and constipation. I went to the doctor as I had a pain in the lower right side just under my rib cage that I couldn't shift with a water bottle and it woke me at night so didn;t seem to be muscular - I just wanted to know what it was.

She sent me for an ultrasound where the sonographer seemed unusually interested in my menstual cycle. She didn't tell me anything other than the fact that I had gallstones and the GP would be in touch.

The GP rang me at work the next day telling me they had found what looked like a large but harmless cyst on one ovary and a smaller but more sinister looking cyst on the other ovary so I needed to go for a trans vaginal scan via the rapid access route and have some blood tests done. The trans vaginal scan clearly showed what the technicial called 2 ovarian masses. The smaller mass had a solid bit in which she wasn't happy with so that set off the referral. The CA125 test (tumour marker) came back elevated but the CA19-9 was within normal limits. The original op was to take out the ovary with the solid mass on it and take out the seemingly harmless cyst while they were in there as it would only grow and become painful. Turned out neither cyst was harmless, both were in fact dodgy tumours and hence the belt and braces second op to make sure the implants hadn't set up home anywhere else.

The overcome website was very useful in terms of getting information and I asked for a copy of the initial histology which they were intially reluctant to give me in case it scared me but I have it now and am glad as I am more a want to know whats what person rather than a what I don't know I can't worry about person.

Having ds2 with asd ld and mh difficulties, ds3 going off to uni and ds1 starting his masters, has been a good distraction and at the moment I am being positive looking at it all as more of an inconvenience and a bit surreal as at no point have I actually felt unwell. Not sure how long I am going to be off work, I am still on the first 7 days self certification. I work in a college and the first op was in the summer hols so it didn't come up.

[TwitterQueen1]

Thank you so much eat (you can call me TQ btw ). Everyone has an individual story to tell and no two stories are the same. Which is why we have to talk about all of them.

Your point about "at no time have I felt unwell" is critical. I am stage 4 and I don't feel unwell either. The chemo makes me feel at bit bleugh but the cancer itself doesn't actually have an impact. I've never been on painkillers for example (except after ops). And I'm not now. I don't need them. I'm not in pain or discomfort.

I hope you will continue to post about your experiences . And if you haven't found it already there's a most amazing MN cancer support thread here The lacies are here for everyone. And if you have any questions or worries pls do pm me.

[user1499169579]

My house mate (shared house) had ovarian cancer at the same time as I was pregnant.
She was 45.
Like you she was fat and exhausted.
Despite having a fairly healthy lifestyle.
I'm not sure when the cancer was diagnosed.
Somehow she didn't tell us that she had it. Only that she needed an operation and would take several weeks bedrest to recover.
Only once my dp and I returned home with our 8lb baby delivered by cs did she tell me that the growth that they removed weighed more than my son. And that she had a vertical scar from breast bone to pelvis.
I don't know what other treatment she had.
She is now (2yrs on) well recovered.

[BarchesterFlowers]

Checking in to see how the walk went TQ.

Eat, it just shows you how vague OC symptoms are doesn't it.

My symptoms were fairly similar and my issue was not OC.

I wonder if there will be a screening programme in years to come. I understand that an elevated CA125 means nothing in pre menopausal women on its own (mine was v high) but surely we can't be that far away from there being a blood test available that can pinpoint this in 2017.

[nickyplustwo]

I hope so too, Barchester. My (pre-menopausal) CA125 was massive too. Although I understand the test isn't foolproof, I would have greatly preferred a false positive screen triggering an unnecessary investigation than an out-of-the-blue diagnosis of Stage IV OC. I hope you're recovering well from your op; I was very pukey for a good fortnight after mine and pretty wobbly on my pins, so you are doing brilliantly to be considering work. Good luck to you too eatyourveg; I hope you recover well and your staging news is good.

[TwitterQueen1]

I took 8 weeks off Barchester! No way was I fit enough to think about work. And the brain wasn't great either.

Nice walks yesterday and today.

[BearFoxBear]

Glad to have found this thread TQ, I think that I lurked (or maybe I commented!) on your previous thread and can't believe that was 6 months ago. I've thought of you often though, so it's great to hear that you're feeling and doing well

[BarchesterFlowers]

Pleased you had a nice walk(s) TQ. . I hope you are having a good week.

I second Nicky's good luck to eatyourveg, good luck!

Well, being the martyr that I am I did OK at work on Monday, but on Tuesday I came home after I realised that I had been staring at my screen doing nothing productive for an hour at least.

I have developed a really terrible cold/cough. My lungs struggled post anaesthesia (they have had a bad year with asthma and pneumonia) and I had a few asthma attacks on the day of my OP.

Coughing hard all afternoon is not recommended post surgery!!

[TwitterQueen1]

Oh ouch Barchester! I am wincing for you! I assume you've got the mandatory cushion to hand to press against your stomach when you cough? My cushion and I were best friends for a few weeks.

I'm tired this week (wk3). All went well today, though it took 2 attempts to get the cannula in i was very brave! I have had 2 naps though, which is unusual. My neuts are down to 1.7 and DD1 has stinking cold so we're keeping our distance.

[BarchesterFlowers]

I have got a cushion . I did wee myself twice.

Sorry you are tired TQ - keep going, keep napping. I have read this new thread back but can't see how many sessions you have got left in this round. Was this a full on chemo week?

[eatyourveg]

Thanks for the good luck messages - I have backed down and for the past 2 days let the district nurse inject me in my tummy as my thigh was getting too purple. The whole thing grosses me out but she assured me, (and was right) that the tummy hurts less than the thigh. Will try the cushion thing as i too am coughing and a bit phlemy first thing in the morning.

GP signed me off yesterday - not due back at work till Dec 6th just 2 weeks before the end of term. In laws here today delivering food parcels though have to say dh is doing a splendid job taking on all the domestic jobs as well as seeing to ds2. He is on his second week of carers leave. Hoping by monday when he is back at work, I will be more mobile as so far I have only managed to potter around the house and out into the garden, one week post op.

[TwitterQueen1]

Today was the last of cycle 5. So next week is full on everything, then 2 subsequent weeks of Taxol only. I assume I'll have another CT scan when I've finished cycle 6 and they'll decide next steps. AFAIK it will be bevacizumab at three-weekly intervals but I'm seeing the consultant again on Monday so hopefully will learn more.

I wee'd myself on the 2nd chemo at the hospital . I hadn't accounted for all that saline they sneak in, in between the chemo, and misjudged my poor bladder control. By the time I'd unplugged my drip, wound all the tubes up and trundled my drip stand to the loo, I didn't quite make it... Tena Ladies are my friend on chemo days (though it hasn't happened since then because i'm forever going to the loo just in case now!

[TwitterQueen1]

Hello Bear!

[Theseaweed]

Dear TQ, don't know how but I missed your first thread. Just wanted to wish you all the best with your continued treatment. Also, I hope this doesn't sound too selfish but thank you for posting so honestly, I wouldn't have recognised all your symptoms and it's so informative. I do realise this is your real life and you're not here as an information service for the rest of us.
I hope your girls are all doing well at University and your pup is doing well too.

[TwitterQueen1]

Thank you very much Seaweed much appreciated. I want to be very open and honest, and in fact I do want to be a public information service too!

Ovarian cancer is to difficult to spot and I got to stage 3 or 4 without realising. (I'm 4 because it's spread to liver, lung lining, bowel, diaphragm, stomach lining, but 3 because it's not in the lymph nodes....)

In their separate unis, DD2 had pasta and guacamole tonight apparently (weird). DD3 had roasted kale, pepper, onions and mushrooms with couscous in a chilli pesto sauce (I'd eat that)! I've trained them well... DD1 and I had chicken afredo with orzo.

[SouthWestmom]

Hello TQ I remember your original thread and diagnosis and I'm interested in your updates. I also have a dd at uni who is learning some life skills....

I hope your story is long and has many chapters

[nickyplustwo]

I had a dedicated 'cough up' session with the physio and a pillow in hospital and hawked up a massive lump of something unspeakable which landed on the very lovely physio's bare arm. So dignified! Fingers crossed we all steer clear of any further yucky germs that everyone seems to be harboring at the moment. x

[Fluffybrain]

Hi TQ. Have read your threads and admire the way you are handling things.
I've found your posts interesting as your experience reminds me of my best friend's. She has had PMP which is a rare form of ovarian cancer which weirdly often begins in the appendix. Here's a link to what it is..

www.pseudomyxomasurvivor.org/pmp-information/

Have you or anyone reading this thread come across it? It is only treated in two hospitals in the uk one of which is Christies.
She had a huge mucus filled belly like you. It was very frustrating waiting for it to be diagnosed and treated but she had her op in November last year. She had a full hysterectomy, appendix, spleen, part of liver, peritoneum and diaphragm all removed. It was thought she would need part of bowel removed but it wasn't necessary so she didn't need a stoma in the end. Then a hot chemo wash of the stomach area. It was about a 12 hour op. With PMP it's not supposed to travel via blood or lymphatic system so 'normal' chemo isn't usually needed but I think she's a special case even within rare PMP so she's had chemo tablets for about 6 months or so. She's finished that now and her latest scan was clear and is back at work.
Just wanted to add this for awareness.

[TwitterQueen1]

Thanks for the info Fluffy - I had not heard of PMP at all.

My belly was fluid - dark urine in colour - not mucus, and drained off easily and quickly. Mucus sounds horrible. I'm glad your friend is OK now.

You're obviously not sleeping OK if you're posting at 4.30 am (assuming you're UK). Hope you're not too tired.

Nicky Yuk, just Yuk!

[BarchesterFlowers]

Yuk indeed!

How are you feeling TQ?

Lovely day here, I am thinking of trying a bit of gardening, well not really gardening, just deadheading things and having a look at all my pots.

I absolutely love gardening but decided to move about a month ago, downsizing (with DH, you know the rest). Anyway since then I have created a lovely container garden because I didn't want to leave anything I had planted here.

My pots are (or were in some cases) glorious. Give me a lot of pleasure. I stopped buying flowers for the house and started buying a pot and a nice plant every couple of weeks instead, swapped a few plants I had grown with friends. I am really pleased with them all and it is amazing how much I have amassed.

[TwitterQueen1]

Hello Barchester
I'm doing well thanks, though very tired. I spent 3 hours yesterday cooking food for DD1 to take down to DD3 at uni. I'm over-estimating my physical capabilities I think....

Glad to hear you're making moves forward with things. It's never easy is it? I kicked myself furiously for not potting up my beautiful acers when we moved out of the family house. I was sad to leave them behind. But I am establishing a new "what I like to call my acer grove."

A couple of weeks ago I bought some potentillas to put in between the acers to keep the weeds down, but I haven't got round to planting them yet.

I'm worrying about my lungs. I have generalised pain - not major - across my lung area and I'm thinking all sorts of stuff. I vary between living in a bubble of "Oh everything is fine, I'm coping, I'm working, chemo's not so bad...." to "Who are you kidding? Do you really think everything is going to be solved so easily..."

The tiredness is getting to me - I always feel miserable when I'm not great physically.

[TheFarSide]

Hi TQ - agree it's hard to stay positive when tired or in pain, or worrying about lungs (I have lung mets and am a bit short of breath, although this can apparently be a side effect of morphine and steroids). I had a mostly wonderful day because I spent half of it in bed propped up on many pillows in a comfortable position, and allowed myself to do nothing without feeling guilty. Then I got up ... and did a bit of cleaning ... and a bit of seeing to emails etc ... and now I feel exhausted and in pain :-( I guess we have to recognise our limitations sometimes, but it's so hard.