Thank you so much lovely ladies for all of your support. I saw my oncologist on Wednesday and she was lovely and listened to all of my concerns and worries. She gave me a thorough examination and could feel no ascites or lumps. My abdomen was very soft. She thought that my symptoms were not cancer related but due to my ongoing bowel issues ever since I had my debulking surgery. She has increased my laxatives and I am seeing the GI team next week. She also thought that my ongoing joint pain was a lasting effect of the taxol and bevacuzimab and prescribed me painkillers. I explained my worry about my rise in Ca125 but she reassured me that it was still very low at 35 when it has been 10 400 in the past. I asked about a scan but she was certain that nothing would show up at the moment. I am to go back in 3 months time. i am delighted and will now try booking a holiday for my husband's birthday next month.
Thank you once again ladies xxx
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Welshandproud
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Doesn't sound like you have anything to worry about, but I understand why you do. I think we all become paranoid, and who could blame us. Bear in mind that some painkillers cause constipation. Get that holiday booked and go have fun! Lyn xx
Just to be a voice of empowerment, I cannot stand the wait and the advice to watch and wait for 3 months does not soothe me.
I would wait 2 weeks and schedule a visit with my GP and ask for your doctor to run the CA-125 to check if it has doubled.
The CA-125 can increase at a steady rate, as mine did. From 11 in June to 69 in September. One week later, it was 101, but this recurrence was caught early, with growths only on my peritoneum.
I think we need to be proactive and I just hope you have a good relationship with your GP.
Even if this only allays your fears even further.
BTW, when I started treatment last week, my CA-125 had gone up to 473.
The whole watch and wait thing drives me to distraction - and I appreciate I'm not in a position to whinge as I am still stage 1 (as far as we know) and really should shut up and sit quietly in a corner but I think this has been the most stressful part since diagnosis - having to fight my corner on every conversation with a doctor.
Just to give a different perspective on watch and wait. I hated the idea of it but then it was explained that the sooner you jump in with chemo, the sooner you become resistant to chemo. The accurate timing of recommencing is the most important. All studies show that there is no advantage to starting chemo immediately that it's best to restart when symptomatic and CT shows progression.
This is response to Laura and Lyn but my response won't post on their replies and pops up in the wrong place.
I have heard this explanation also, and heard it from ladies here, who gladly accepted waiting and remaining free for several months with no chemo.
Later, many of these same ladies discovered their recurrence, but now the cancer had developed inside their bowels, or bladder or liver.
Not to be scary, but I was not going to wait for the cancer to grow inside any organs and I was prepared to fight for immediate treatment, even if nothing showed up on the scan.
This was a moot point, as the cancer had spread back over my peritoneum, still small nodules, but my team was ready to begin treatment, which was a relief to me.
Sounds a good position to be in to me, I say try and forget OC for a bit and enjoy that holiday! Little San is right all
the research shows it doesn’t make any difference in the long run if you start treatment straight away or wait for symptoms but obviously a lot of people find this hard. This is probably why the compromise 3 month blood test/appointment seems quite common.
If you are monitoring your ca125 every week or so no way will you get a mental break from the damned thing! But in the end of course it’s your body, and should be your decision. Good luck!
Thank you Madeleine. That's how I'm feeling to be honest. If I go for tests too often I won't be able to switch off at all and the damned thing will be winning. I intend to enjoy my holiday and Christmas and new year. I'm just relieved I'm not back in treatment as I feared before my appointment. Xx
That's so good to hear. I read on my PARP FB site about a lady who waited from the initial rise to the start of her next treatment for 10 months due to her oncologist wanting her to wait to start chemo.
Going away helps with not worrying (not thinking about it) and celebrating your husbands birthday is the perfect reason! Enjoy and please keep us posted. oxox Judy
I'm so pleased for you . I tried to reply to your original post but for some reason it wouldn't send. You have a great Christmas and enjoy that well deserved holiday. Love Zena xxx
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