Last week Iwrote about the fact that my oncologist had said that there would be no monitoring when i finish treatment next month. Well, i saw him yesterday and was ready to do battle! There had obviously been a misunderstanding because he said that i would initially be seen three months after my last treatment, then every six months. I couldn't understand how it could have misheard last time, as i had the same friend with me, and she had heard him say no follow up too. Anyway, the monitoring would be a physical exam only. Can a recurrence be picked up by feeling a tummy? I was not very happy and pushed for regular CA testing, which he did agree to but said that he didn't advise.
All in all, i am happy with the outcome. I had really been stressing this last week.
Many thanks for being there to listen.
Jenny
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Hi Jenny, glad to hear you are going to be monitored. Not sure why he advised against CA125 but regardless hes going to test for it so thats good. Pleased for you xx
Jenny, Glad you took a friend (witness) along to your appointment and were assertive. CA125 is a marker for how you're doing, as long as it was elevated beyond normal range at diagnosis. If we all "watch and wait" until tumors are large enough to be manually detected, then we'd be too far gone for more treatment. So, keep advocating for yourself because no one else knows your body as well as you do! Never be afraid a caregiver might not like your requests. This is your life and you need to firmly advocate for yourself every step of the way.
Pleased you got this resolved for your peace of mind . Tesla has summed it up perfectly. We really do have to be our own advocates . It's us that are living with this disease and we have to speak up , or scream or shout for what we need.
Hi Jenny, I am so please you are going to be monitored more often.
I am what you call a very friendly person so where ever I go I make friends. That could be in a cafe, a shop or even patients in a hospital waiting room. Over the last 2 years I have listen to a lot of ladies with oc. The one thing that really hits me is how differently we are all treated. Even if we all have oc & all have about the same grade.
A lot of the woman I have spoken to have been older than me but very often they are not having as many check ups as me. They are not been offered ca 125 & quite a few wasn't even offered surgery.
I feel we have to keep speaking up letting them know we matter, we are important.
One of my mum's saying was, if you don't let people realise how important you are then they never will know. Good luck for the future take care Cindyxx
My monitoring was a physical exam and CA test. The CA rise was the only clue to my recurrence and bought on a CT scan so I think you are doing the right thing
Well done. CA125 only real tool used as far as I know, plus physical exam. CT scans are very radioactive, & only used if necessary for yr own protection
Jenny well done to you for standing your ground with onc, I have read some doctors do not like doing ca125 every follow up appts as it can make some patients very anxious.
This is something I've been worrying about too Jenny. I didn't know what they did when the 5 years are up and am certainly going to ask when I have my next appointment. I'll be ready for battle now I've read what you have to say.
It seems most of the ladies know more about their tumours than I've ever thought to ask. All I know is that is was a large tumour. I didn't even know there were different sorts. I think I'll have a list of questions next time I go.
A similar situation occurred to me; after putting control of your life in someone else's hands..it felt like abandonment with little explanation. I had so many unanswered questions so I insisted ("bossy bitch") on a followup appointment, where I was armed with my questions. I did not like all the answers to the questions but at least I got a response.
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