Follow up

I had a 14cm high grade ovarian tumour removed in September along with radical hysterectomy. Outcome was stage 1. Very lucky I know.

I opted for 6 cycles of carboplatin to optimise my chances. This has just finished. My oncologist has told me he doesn't intend to scan me or do CA125 test, so it's just watch and wait. During chemo CA125 was around 30, last one 34 which was slightly up on the previous one. I did not have a pre-treatment baseline done.

I am surprised and concerned not to have CA125 checked though his reason is that it makes little difference to survival rate and could increase number of treatment cycles for no benefit. Should I insist???

Thanks, Alison

15 Replies

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  • Hello, I've just done a little research on CA-125 (good old wiki) and from what I read patients with early stage ovarian cancer don't usually have elevated CA-125 levels, it's something that is a more useful indicator in patients with a more advance stage as to how well chemo is working etc. And if your readings were 30 and 34 they are nicely within normal range.

    en.m.wikipedia.org/wiki/CA-125

    There's a lot of scientific jargon but the section about it being a bio marker is quite useful.

    So I can understand why he doesn't think it's necessary to do one just now.

    I think if it were me though I'd be inclined to insist on a scan, or does he plan to do one in a few months time? I know you said they removed the tumour and chemo was precautionary but at least then you'd know there was nothing else appearing in the meantime that the chemo didn't affect?

    Xxx

  • Thank you so much for all this. Just taking 93 year old dad to opticians and will study in full asap.

    I don't think scan is an option at all. Due to a mess up, I had to have 2 scans pre op and he mentioned that he didn't want to expose me to the radiation.

    Really appreciate your help! Xxx

  • Ah of course, that's understandable

    Xxx

  • Hey Alison,

    I was the same as you, Stage 1 with a 16cm cyst/tumour removed in August 2015, followed by 6 rounds of Carbo/Taxol. My CA125 was 26 on diagnosis so never elevated above normal so not a good marker for me. I do not get routine Scans or CA125 and I think this is relatively common for stage 1. However I am due for my 6 month review on the 11th April so I did ask my GP to get the CA125 done so that I will have a reading for my Gynae Onc at that review, but that was something I decided myself. You can get your GP to order the test if you want. Its been a year since I finished Chemo so have not had a reading since then but I chose not to for my own sanity more than anything else.

    Just the way I have dealt with by way of example only!

    hope all good otherwise!

    Dx

  • Many thanks for the advice. FYI I was 157 on diagnosis.

    In contrast to you I actually wondered whether I need to have the test to keep my sanity IE know what I'm up against. However I am wondering if maybe i should just put it to bed for now like you! Very useful to have other people's thoughts and advice!

    May April 11th and all future reviews be good news for you!

    Thanks xxx

  • Hi Alison, I think you should do whatever makes you most content. It's all very well for the medics to make a judgement on what they see as beneficial to their treatments but as a layperson who is not scientifically savvy, as most of us here, the ca125 is the only guage we have, other than symptoms, of course.

    For me, I like to know what my ca125 is. Presurgery it was 197, the highest it's ever been, then in the 20s, down to the teens, then 37, 32 and currently 61. So when my 125 starts heading low 30s it's high for me, although in normal range according to the experts.

    Suffice to say, the ca125 is very personal whether to insist on it or not. Do whatever is comfortable for you.

    Good luck and take care. Warm regards Carole H 😊 BTW, I am 3c high grade serous diagnosed early 2013.

  • Thanks, i probably should have said I'm also high grade serous which i believe is unusual for stage 1.

    I am going to put my assertive hat on (doesn't get many outtings) and try to let my oncologist know that i need it to be up for discussion when i see him in June.

    Very good luck to you too and thanks again Ali xx

  • Hi

    I would ask GP to monitor it. I'm stage 1. Serous cell high grade tends to have high readings whereas clear cell do not. So I am regularly checked. The research from 2016 says survival rates are not increased but patients treatment delays cause more complications when not checked. My oncologist tells me they will continue to monitor as mine has been reflective. Diagnosis it was 34

    LA xx

  • Thanks, and I'm also high grade serous so this is very useful information. (Diagnosis was 150s for me.) Without doubt my supportive GP will monitor it if asked but I'm also going to ask my oncologist to discuss this further.

    Wishing you all good xxx

  • Hello there, If you feel you would prefer a blood test the just mention it to the CNS or on your next app. I am now a year on from my treatment,carbo.taxol chemo etc. & I am watch & wait,no blood test no scan. My Oncologist has now put me on 6monthly appointments. Like everyone I used to worry about not having a scan etc. but now I am trying hard to take it in my stride & not think about things to much. I was diagnosed with stage 2 grade 3 serous.

    I hope that this is helpful to you. Love Caleda xxx

  • Yes it's really helpful not to stay bogged down in my own thoughts and hear other people's lived experiences.

    All good wishes to you xx

  • Hello Alison, Get a baseline CA125 reading for where you are NOW. It will bring you peace of mind to know from whence you began the "watch and wait". Then if anything changes you'll at least know where you were before any symptoms showed up. I've read there is a 3-4 month lag from elevated CA125 to evidence showing up on a CAT scan.

    Did your doc do a scan before surgery? I'd be shocked if he didn't. If your surgery outcome was "R-0" (residual disease, none visible) then I can understand why he's not doing a Scan at this point in time, because in theory, there should be nothing new to see.

    Do not get dismissed when you ask for CA125 test. I was dismissed by multiple doctors when I went to them with symptoms of ovarian cancer. If those miserable sods had just taken a look at my CA number or even done a CAT scan I might have been spared the seven more months it took to get diagnosed. Maybe I would have been diagnosed at Stage 1 or 2 instead of 3C, which seriously affects my length of survival. So, listen to your inner self and get the bloodwork done. Oddly, doctors seem to treat the numbers and not the patient. This is why when a doc tells you that getting the information doesn't lengthen your survival, you just tell that person that "getting your CA125 is important to YOU and YOU ARE NOT A STATISTIC, you are a PERSON. You can read my profile for more details. Tesla

  • Very many thanks for this. My reading of 34 was only 2 weeks ago just before my last treatment. (I had to ask my GP for the result as the oncologist only feeds this back at clinic where I'm not due till June. Thank goodness for supportive GP!) I'll use this as my baseline.

    I had a scan in early April which reported nothing abnormal. When the MDT team saw SAME scan in September they saw a 9cm ovarian mass. Because of elapsed time, my surgeon decided to repeat the scan and include thoracic area. This was 1 week before surgery and about 5 weeks before chemotherapy. So yes, I have had previously op scan so from what you say don't need one.

    I know i was very very lucky and hope you will be too xxx

  • On second thought, getting a scan NOW should prove that you are indeed R-0 after surgery and currently NED. Otherwise you're just taking someone's word for it. The way I see it, down the road, you may wonder if the doc really got everything. I've read my own medical records (here in US) and I am SHOCKED at the serious ERRORS in them. I had Breast Cancer in 2006 and had a mastectomy and NO CHEMO yet my records say that I had chemo! This is a really BIG error. So, medicine is NOT hearsay. Ask for the proof. Best to you in your fight to be cured. Anything is possible. Love, Tesla

  • Omg! I have actually seen my scan results as GP shared it with me! Xxx

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