Hi everyone, I hope you're all doing as well as possible in these horrid times. For the last ten days I've felt bloated, peeing more as well, discomfort in my lower abdomen when I pee, I feel tired despite sleeping well. I got up the courage to phone my csn Thursday, she said she would talk to my oncologist, she got back to me Friday and said he'd asked her to arrange s ct scan, so its the waiting game again, I'm trying not to think the worse but I feel angry, I've only been NED for four months ,so hardly got over the chemo. Also I still get a weak feeling from time to time and tire easily, is that normal after four months since last chemo ,I'm thinking its the cancer back.
Cheryl xx
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Hi Cheryl, if you think back a month ago when your CA125 was normal, my bet is that you’re probably going to be fine.
A good idea to have a scan to put your mind at ease though. Your symptoms may be your mind working overtime with the fear of it coming back. I’m exactly the same and any little ache or pain scares the life out of me!
I think you’re sensible to speak with your Onc nurse and keep a close eye on things but hopefully it will prove you be nothing.
Sending you much luck and love.
Keep us posted and remember, this fear is natural after what you’ve been through.
Thank you Denise, my daughter just said it could be a uti , said you don't always get stinging, wondering whether to ring gp tomorrow ,but hopefully you're right and my imagination is running riot .xx
I was wondering that too? It’s quite possible. I think that you’re CA 125 would have started to show something last month. It is good to check though.
I sometimes think I have a lump in my groin and my CA did rise a little for two consecutive months but my consultant says it’s still in normal levels and he’ll just keep an eye on it. I couldn’t eat for three days! It’s such a roller coaster isn’t it? The fear can be so consuming, but I think as we both are only around 4 months clear, we’re both hyper sensitive about any change.
I would ring your GP as it’ll help you to feel calmer too.
You’re so welcome Cheryl; I know what it’s like when your mind runs riot. I find if I share mine, I do feel a lot better. Just getting it out of your head helps!
Hi Cheryl. As to your last question you could well be still feeling the effects of frontline chemo. I really hope you are not having a recurrence. Try not to jump to conclusions until you know for sure. I know it’s hard. Sending you positive vibes.
I know it takes a good while for the body to get over chemo, I have just finished and been told it can take up to a year to feel right again. However I can understand your concern but it could just be chemo belly but worth getting checked out. Everythingcrossed for you
Hi Cheryl , I can do identify with you , I have a blood test booked , and a phone call with my oncologist in two weeks time . I have been having pain in my groin for two weeks now . It makes the waiting worse during this lock down .
I can remember feeling dreadful for at least six months after treatment. I think we all think the beast is back with the slightest twinge.
Your oncologist seems on the ball by getting you scan done so quickly.
This is so much easier for me to say than to do, but try not to get ahead of yourself. I walked around after my 3rd session of chemo absolutely, positively sure my cancer was back (during chemo, no less!) because of the pain I was having all around my abdomen. After talking to the doc, it seems as though having major abdominal debulking surgery takes longer to heal than I had planned - who would have known? - and that my pain was just from the dumb scars and muscles still healing. This is all to say, it can be so many less scary things than cancer, so let the pros tell you (but come with lots of questions!) Thinking of you and a good outcome.
First hugs and prayers to you for a good outcome❤️ I’d ask for CBC with diff, , UA with reflex and culture, and Ca 125 to go with that ct scan😊. It took at least two years before I started to feel normal. I Just had first reoccurrence almost 5 years ned sept 2019. I’ve had 6 rounds, petscan not so great so 3 more rounds and finished a total of 9 rounds today, now to follow up with another petscan 🤞🏻
Sorry to hear you are experiencing the bloated feeling.Mine was infact an overloaded bowel ,dreadful constipation, passing urine frequently.At least you are able to go for a scan.They are not scanning anyone at the hospital I attend due to Covid 19 so at least it will put your mind at rest. xx
Sorry to hear what's happening to you ,I'm sure your team will have options for you ,I hope we don't have to wait too long for our ct scans ,wishing you the best of luck. Xx
I CAN TELL YOU IT TOOK ME WELL OVER FOUR MONTHS TO COME BACK FROM CHEMO AND FEEL ALMOST NORMAL, SO GIVE YOURSELF A CHANCE TO GET STRONGER. IF YOU'RE HAVING ANY GASTRO PROBLEMS YOUR ABDOMEN COULD BE BLOATED FROM THAT. I KNOW OUR MINDS SOMEHOW ALWAYS RUN TO THE WORST,
BUT THERE ARE SO MANY OTHER THINGS WITH THE SAME EFFECTS. YOU'RE PROBABLY FINE AND THE SCAN IS THE BEST IDEA TO PUT YOUR MIND TO REST.
I remember after chemo it took me at least a year for things to settle down with my body especially after having major surgery ( don't know if you had this) - all your organs get pushed around. I had a couple of urine infections after surgery and a couple more after chemo and have had one recently. I don't know how common this is but your daughter could be right and you don't always get burning with s UTI. I know it's difficult not to overthink things at the moment but I've got my fingers crossed for you that there is a simple explanation. Having said that, I am waiting for a phone call from my Oncologist this p m with results of my blood test. Don't quite know what's happening with me but I'm hoping for the best. Not quite sure what will happen if the news is not so good as I can't get a scan of any sort at my hospital at the moment. Roll on 4 o'clock. I hope, when you get your scan that it's positive news and will put your mind at rest. Lots of hugs.
Thank you so much Jackie , it had made me feel better ,I've decided I will phone the surgery tomorrow morning to ask if it could be a uti .I really hope you get good news this afternoon ,hospitals have been told to resume cancer treatment so hopefully that will include scans,I was surprised to find my hospital is still doing them ,take care ,will be thinking of you . xx
Ask if your a candidate for IP, intraperitenil chemotherapy. Push for it if you are, it adds up to 3 yrs without reoccurance. I've been cancer free 6 yrs now. I had stage 3c clear cell carcinoma. Best wishes Liz
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Cauatiously optimistic, I think.
Sadly its back
so frightened i cant think..
Round 3 its back!!!!
Good news (I think!) from scan result.
