Hello Teal Sisters,
I finished my last treatment 10/2021 CA125 at diagnosis 4300 has been in 6-7 range post treatment on my recent draw it was 13 should I be concerned with the spike? According to my Gyno Onc & Onc currently NED they have both told me that the CA125 marker is good for me I'm 3B low grade endometroid has anyone experienced fluctuations post treatment? I know its in range but still makes you a bit nervous.
Hi, before I had any idea that CA125's could go so high and mine was 7, I asked what I should do if mine went to say, 12. I was told that further investigations would go ahead. Not sure if this is any help really but that was what I was told at the time. xx
Hi Zena,
I just had my follow up with my Gyno/Onc & Onc they are not overly concerned I did have hernia repair surgery in March with absorable mesh and have been having some upper abdominal pain I know inflammation can affect it. I have a wonderful Internist I contacted her office to have her order an updated CT Scan or whatever she advises. It drives me crazy that you have to be your own advocate and push for tests and communication with the specialists could drive one batty! Yes your response helped I hope your doing well thanks a bunch.
Looking back I'm sure 12 would be nothing at all to worry about but I thought CA125's only went to about 35. Since then my friends husband helped discover? CA125 test and told me about them. I certainly wouldn't worry too much now. Luckily my CA125 has been 8 for 8 years now. It looks like you have to discover most developments and what's going on yourself (and on this site) although I was pleased with the hospital at the time. I've since learned a lot more. xx
Hi Zena,
Yep 35 is the range my Onc doesn't seemed concerned the first year I think is hard because every ache and pain worries you its a journey. I agree you do learn a lot along the way I am so happy your 8 years out a true blessing!
My CA125 on diagnosis was 9105
Hi Saintgermain, You mention that you have had a hernia repair recently, how was the whole process for you? I have been told that I have a paraumbilical hernia and it's indeducible, therefore needs repair, the consultant did say I would have to stop my PARPs before and after and that he will use a mesh, not sure if it will be like yours absorbable, would love more info how it all happens.
Jas x
The hernia repair went well a bit painful for the first week I bought a abdominal binder on Amazon which was so much better than the one they provided at the hospital I wore it for about 8 weeks helped quite a bit. I got 2 opinions the first surgeon wanted to reopen my 7" debulking incision I called my Gyno/Onc he referred me to a laparoscopy surgeon who I went with 4 small incisions I have heard from some Survivors that have had it via open procedure that sometimes a Gyno/Onc is present and they do a second look at the same time they also remove any scar tissue at that time and test the hernia tissue which was fine.
HiYes my surgeon said he would need to open up my incision about six inches in the same place, my oncision from debulking was 12in long. He said he can't to it via camera as there will be lot of scar tissue in the way, to see clearly....etc. I am a bit apprehensive about the cut being in the same place. . .
Hi! I just want to say keep an eye on your scars. I was NED 4 years, had a laparoscopic surgery (not cancer related) and 3 of the 4 scars developed tumors of the same origin as original cancer. When I had this surgery my ca125 had gone from 5 to 11…. I’m really not trying to be an alarmist, as I later found out it is not uncommon for this to happen. ❤️
No need to worry with that. On diagnosis, my result was 763. With treatment it came down to 11. Now it fluctuates between 16 and 19. They are really not worried by that.
Thank you Paintblobs (love that) its the first time its fluctuated I'm thinking it stabilizes a bit following chemo I think when your a new Survivor doesn't take that much to make you nervous.
Yes, I was a bit nervous with mine too. I would trust the doctors. If it does start to look bad, I feel confident they will react quickly. I do get a monthly test - that is a good idea.
Hi, I'm in UK.I would say that any change should be investigated.I had high grade serous and on diagnosis CA125 was over 4000 over two yrs ago. All went back to normal after treatment. This January my levels showed a slight increase up to 38. I was experiencing some pain, too so Onc sent me for CT scan. CA125 slowly creeping up. Currently 62. Scan showed that the cancer has come back, this time on the dome of my liver. Grown about 1 millimetre in past 3 months.
So I would ask for frequent monitoring of bloods and scans if you can get them.
Good luck! X
Claire
Thank you since my Gyno/Onc & Onc don't seem overly concerned I have an appointment with my GP today since I am having some left side pain it could be perfectly normal but she's very pro-active could be the mesh moving but I want to be sure.
Well within normal range and less than double the previous reading. Suggests nothing is amiss, but it wouldn't hurt to ask for a retest in 4-6 weeks. Mine was 680 at diagnosis and has hovered between 4 and 15 ever since (now 16 years cancer free).
Thank you I'm having them retest in 6 weeks a relief that yours went between 4-15 congrats on 16 years a true blessing!
If you don't mind what subtype stage and grade did you have?
My Ca125 has always been really high, 9500 at diagnosis and never achieved NED. I’ve just had fourth line treatment and been sent off on a break at 3092! Bit concerned
Its one heck of a journey. Is there any trials that you may qualify for.
Hello Teal Sister, your number is good!! Just breath, try not to worry, and enjoy your day. Put those thoughts behind you. Wait till next blood draw for results. But for now just live. This is what I aim to do every day. God Bless. 🦋
Hi,
I'm getting it checked at 2 months didn't want to wait until 3 I'm low grade no maintenance check every 3 months at this point I think the hernia mesh maybe moving a bit which could be part of the spike seeing my GP today to discuss left side pain.
Thank you I think I panicked a bit because its the first time they fluctuated . We have to live push ahead and not over read stuff find the blessings! God Bless
Hi there Saintgermain
Thank you for your post. I’m really sorry to hear that you are feeling nervous following your recent CA125 result. I can see you’ve had several replies from the forum community which I hope have been helpful.
I wondered if you have had the opportunity to discuss your questions with a member of your clinical team? They should be able to provide you with personalised advice about whether any further investigations or a repeat blood test are necessary. I wanted to share a resource with you from the Foundation for Women’s Cancer, a non-for-profit organisation based in the U.S, who support research, education, and public awareness of gynaecological cancers. They published a booklet in 2017 which explains more about the CA125 blood test and how it is used in clinical settings, which can be found here: foundationforwomenscancer.o... . The booklet says that many clinicians focus on the trend in values over a course of time rather than on any individual value. I can see from you’re profile that you are based in the U.S, but it’s important to note that certain content in this booklet may not be as relevant for those based elsewhere.
I hope this information is helpful. We are here to support you so please don’t hesitate to contact us if you would like to talk through anything with a member of the Ovacome support team. You can reply directly through this forum, email us via support@ovacome.org.uk, call our support line on +44 800 008 7054 or +44 7503 682 311. You can also schedule a 1-to-1 video call via Zoom or Skype if you prefer: ovacome.org.uk/forms/1-to-1... . We’re here Monday – Friday, 10am – 5pm (U.K time), to help with questions or just have a friendly chat.
Best wishes
Annie – Ovacome support
My tends to be flexible before xmas it was 9 its now 16 but normal l believe is up to 35 so toldthats absolutely fine, so please try and not to worry mine seemed to be around a covid injection and was told this was still ok. We all worry about the CA 125 test results l think but lve been ok thank goodness and still classed as NED . Good luck sending love SheilaFxxx
Hi SheliaYes up to 35 thank you I would assume it gets easier with time am so glad your still NED blessings all around
Once it settles, they will only be concerned if it reaches more than double yr nadir. This is the info my onco told me, & I was closely monitored after mine doubled to 18. However, the recurrence on my bladder was detected 10 months later when ca125 reached 43
Thanks SherryMy Onc never explained the nadir to me can’t thank you enough she didn’t explain it settling
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