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.

After what you've been through I don't blame you for feeling apprehensive, but very much hope that everything you've had so far will have kept it all at bay and it's business as usual on Wednesday.

Thanks re my mum - I hope so, but knowing the hospital around her way there's no guarantees

Keep us posted on how you get on

Curtains - there was something on TV last night about an acute shortage of radiologists. I'm v slightly concerned about this since I'm being monitored for a recurrence of a Borderline Ovarian Tumour. I've just been demoted from having a scan with a radiographer, overseen by a radiologist and appointment with a Gyn-Onc, to the Early Pregnancy Assessment and Gynae Unit. I have an ObGyn doing the scan, and no radiological back-up. She interprets my Ca125 and Ca19. No prob with that. I'm sure I'll be back with GynOnc if my numbers rise. But I'm not entirely confident that she can pick up an implant on the u/s. I don't want to wait till it's 'a mass'. And I'm 1c, because of abnormal - but not malignant - cells in the abdominal washings, so implants could be anywhere, not just in my pelvic area. She said to phone if I have symptoms, but I didn't have any first time round - barring pregnant profile through 2 kilo tumour.

On the one hand, it's reassuring that I'm low priority. On the other ...

Twitter - best of luck for Wednesday. There should be an emoticon for fingers crossed.

Thyme - I think you're right, her hospital has been rated inadequate for imaging etc so I shouldn't be surprised.

The thing that bothers me is that she had cancer in an area (that was removed) but nodules were seen elsewhere so the same dept referred her for follow-up scans. Last appt she was told that the cancer is completely gone from the initial area, so the only reason to call her back is that they've seen something new. But let's hope now.

I too saw the item on TV about radiologists. I am due my first 6 month follow up in February which I thought the gynae/onc had said would be bloods and a ct scan, as like you Thymeout, I had borderline but with positive washings.

I had cause to ring the nurses last week and when they rang me back after having spoken to the consultant, they said I would have bloods and an ultrasound before my follow up appt. I'm right in thinking they are two different types of scan aren't I? Wouldn't a ct would give more detail?

I'm now thinking that perhaps its "an instead of" scan rather than an "as well as" one. Maybe its the ob/gynae dept doing it. That would be a worry seeing as they missed the tumour first time round.

TQ you will be much in my thoughts tomorrow. I really hope you receive encouraging news and can resume the drug trial soon . Hand hold from here

EYV - when the consultant 'gyne-onc lead' at my local hospital told me to make an appointment for my scan, I asked her if it was a CT scan and she reacted in a 'No, of course not. It'll be u/s' sort of way. In the event, I had a full abdominal ultrasound, including liver, but nothing internal. The technician said it looked OK but someone else would be reviewing it. The second time, 4 months later, it was just an internal US with a technician and an internal exam with the registrar.

I think different sorts of scans are better for different parts of the body. Pre-surgery I had pelvic and abdominal MRIs, and a chest CT. But my tumour was palpable and extended up to my diaphragm. I gather they avoid CT scans if they can because of the radiation build-up. And MRIs are expensive. I think they were assuming it was malignant, because of its size, and were looking for secondaries.

But it does seem to vary a lot between hospitals. Borderlines are relatively rare and have such good survival rates that I don't think there's much research being done on best practice. I'm officially still under the teaching hospital - I think. The local hospital, which doesn't have a Gyne-Onc, is merely 'facilitating' the monitoring.

How's your recovery going?

TQ- hope you're managing to find something to distract you from worrying too much.

Thanks for the reassurance Thyme I have found the copy of the letter the gynae/onc sent to my GP and it definitely says CT scan so perhaps the ultrasound is an additional as my insides are still playing up. Is it normal at this stage to get tummy ache 2-3 hours after a meal and for bowel habits to change quite dramatically?

My recovery officially finishes on Tuesday as I go back to work Wednesday after 10weeksl. Thankfully its the last 2 weeks of term and most of the students will have already finished so things should be quiet. Had a carers assessment a couple of weeks ago and the lovely lady who I saw said she would put in for 2 hours pw domestic help, a monthly massage and a cash payment from the "something for me" pot. If any of you ladies are also carers, I would thoroughly recommend having an assessment, I burst into tears when she said she could definitely help - hadn't realised just how exhausting coping with ds had become.

I am wondering if the bloated feeling is here to stay. I used to sleep on my tummy but it feels too uncomfortable these days (as though I have just pigged out on a 10 course meal) and I'm also hardly ever hungry which is a blessing really although I would have hoped for my waist to have gone down a bit - I still look 6 months pregnant.

Wishing you all the best for tomorrow TQ and its a yes for the Avastin

ETV

Funnily enough, I've had the tummy ache, too. But only 3 times in 3+ years. It's like the occasion I ate too much trifle as a child. Like you, not immediately after eating, but an hour or so later. The first time, I put it down to re-heating yesterday's cauliflower cheese. But the other 2 were when I mindlessly cleared my plate, even tho' I'd had enough. 'Wicked waste' and all that.

I don't know if it's connected with surgery. I had a big incision, but not even a twinge in my abdomen since then. And I'm older than you, so other non-connected things could be getting less efficient. And I'm slowing down, so needing fewer calories and smaller portions. I'd mention it, if it happens more frequently with you, at your age, leading what sounds like a much busier life. So glad about the caring assessment. I'm not surprised you burst into tears to have the strain you are under and the focus on you for a change. Good luck for your return to work!

Thinking of TQ today.

Hello
The cancer is back. 2 small spots, one on the spleen, one near the bowel.
No Avastin. A break over Christmas to regroup and then on to Caelyx. Anyone had this?

It'll be every 4 weeks, which will be a relief from weekly.

Shit. Sorry TQ. Hopefully they can zap it quickly, if it's currently small hopefully that's a good sign.

I want to encourage you to focus on Christmas and put it to the back of your mind, but I'm sure that's
A - not helpful
B - the last thing you feel like doing

But sending you lots of hope either way.

I have just spent the last few hours reading through both your threads and I am gutted that your cancer is back. I know you've been feeling a bit isolated, and lonely lately and your family haven't been as supportive as they could; not your DDs - and I wish they could wake up and show you they love you now It's sad but people sometimes run away from pain, but you can't run away and they shouldn't either because family is meant to stick together and be there for each other. Please allow yourself time to be upset that the cancer has returned, but please don't give up. I know that's easy for me to say, but I truly mean it.

Just want to add my support to you . I know nothing about what you are going through, but surely having a treatment plan is positive. Glad it will be every 4 weeks. You have been so brave , stoical and without self pity . Hang in there . We are all rooting for you and this virtual support is real and we all feel for you . Wish I was better at expressing myself !

Sorry to hear this, TQ. Bugger. Don't know if you've ever used the American Inspire OvCa site? Bigger population, so more people who've had some direct experience of Caelyx. I think it's called Doxil in the States. And it's used for B.C. as well, so possibly there's someone on the Lacies' thread who knows about it. What has surprised me from my visits to the site is the number of people who are on their 4th/5th lines of chemo. Different strokes for different folks.

This is just in case doing some research would help you to feel more in control. Then switch off for Xmas and be ready to take on round 2 in the New Year. Small is eminently zappable.

Buggering bollocks TQ, I'm really sorry.
I've followed your journey since your first post and like many others will be rooting for you.
Hugs (sod it being in-MNetty, I don't care!) and 💐

Another one here on team TQ nothing useful to add, no words of miraculous inspiration to keep you going, apart from shitty bollocks, so unfair.

Choco thank you so much for taking the time and trouble to read through my posts.

areyouready I'm loving the 'team TQ* thankyou

tiddly I'll take all the hugs

Thyme I'm gonna zap those buggers right out of my life.... What's the real song title? brain has gone to mush.....

GG all support is so much appreciated. You're expressing yourself very well

curtains I am going to kick the whole cancer thing out the door for a month and revert back to my bubble. It's quite comfy there.

Bugger about the cancer being back. Hope you have a great Xmas away from hospitals and drugs etc.

So sorry for your news. Cancer is truly a total cunt

Hi TQ, I am a lurker on this thread but I just want you to know that I am thinking of you - often. You have been so incredibly courageous through this ordeal and I am so sorry they have found those spots. Bastards. I', crossing everything that can be crossed to hope that you get rid of them quickly. In the meantime, I hope you have as fabulous a Christmas as possible with your girls.

Hi TQ hope you are back in the bubble and enjoying lots of carrot cake and tea. Thinking of you today. See how much support there is for you on they thread? You are not dealing with this alone. Loads of [flowers} for you. Hope dd3 is coming home soon, term must be nearly over.

and from me too, hope you enjoy having your dd home and that after Christmas the Caelyx manages to do its stuff.

Thyme I'm gonna zap those buggers right out of my life.... What's the real song title? brain has gone to mush.....

"Wash that man right outa my hair?"

yes, thank you Ringle South Pacific I think? Before my time.... my brain is working in weird and wonderful ways right now.

I'm still finding it difficult to get my head around the fact that I'm so ill, but in no pain.

On the plus side, I'm talking to HR and it looks like I can retire through ill health almost immediately. Apparently I still have 22 weeks of sick leave on full pay, and then the payment protection thing will kick on. Also, I can apply to draw down from my (not very big) pension to pay off the mortgage. So this is good news. I just can't see the point of work any more.

My friend told me he kept forgetting he was ill....(stomach, not ovaries but you get the idea).

Good to hear the financial side of things is under control.

That's really good news about work, if you can pay off your mortgage that's one less thing to think about. And I agree, what's the point in working at the moment? It's time to focus on you, your family, your next treatment and recovery.