What level should CA125 be after total hysterectomy & bilateral salpingo-oophorectomy?

[Salubrity]

Hi everyone. I am very new to this forum and can see how vital forums such as this are for those of you who are bravely battling cancer as they provide such essential support, compassion, care and advice to so many and their respective families, partners and friends too. I only wish I had found this sooner before my dear Mum passed away last year.

I'll be candid, I was really unsure as to whether I should actually post this question, given that I have not even been diagnosed and feel rather selfish being preoccupied with my own inconsequential worries. However, I do remember my Mum saying how important it was for one to listen to one's own body and to ask others for their advice. On that note I hope you don't mind my asking whether anyone had any insight as to what the ideal level would be for CA125 test after a total hysterectomy and both ovaries have been removed. I am 48 but had a total hysterectomy and my ovaries removed when I was 38.

Some of my medical history:

Placental abruption at birth of first child, born at 32 weeks.

Zoladex injections. Placental ablation and sterilisation.

I had both a total hysterectomy and both ovaries removed in 2012 after years of severe endometriosis, recurrent ovarian cysts (some diagnosed as being borderline) and chronic pelvic pain which spanned for many years. My appendix was also removed due to extensive adhesions covering the cecum and appendix from multiple laparoscopies.

Unfortunately I had to have my kidney removed a year later due to the complications which arose from my hysterectomy when the surgeon stitched up my ureter, causing gross hydronephrosis, so I had to have several nephrostomy tubes inserted directly into my kidney to remove the excess fluid. Sadly, however this did not improve things and ultimately the kidney had to be removed.

In the last two months I have been experiencing persistent bloating, pelvic cramps / pain, constipation and my appetite has decreased, largely because I feel so uncomfortable as my stomach is so distended . There is a very strong family history of ovarian and breast cancer on my late Mum's side ( my mother, two aunts, two first cousins and two great aunts who have all passed away). I have been on HRT since my hysterectomy at 38 years of age and receive yearly mammograms.

I have recently had a abdominal ultrasound but this did not reveal anything sinister, however during a recent CT (to investigate chronic renal pain in the remaining kidney), they noted a peritoneal nodule 10mm x 9mm in the right anterior pelvis, which was also present in a previous CT scan from a year ago but has now moved from its medial position to the right anterior pelvis. I have been struggling with a pulling sensation (exactly like I used to have when ovulating) for a while now. There are also calcifications near my remaining ureter.

I have spoken with my doctor to request a CA125 test but they have refused point blank to authorise this and have just referred me to a gastroenterologist instead. The recent blood tests were negative for celiac disease and show no evidence of blood in a recent FIT test. However, both my iron levels and B12 are abnormally high and my thyroid levels (hypothyroid)are also out of whack again.

The GP has stated categorically that it is impossible for someone to get ovarian cancer if you have had both your ovaries removed and a total hysterectomy. I have since read though, that it is still possible for someone to get peritoneal cancer which can mimic ovarian cancer. The doctor at the hospital, I recently attended (for kidney pain) also informed me that endometriosis can return years later despite a total hysterectomy. I wasn't aware of this.

I decided to pay privately for the CA125 test for my own peace of mind, given everything that happened in the past and wanting to be my own advocate. I have just received the results which are 33.

Is this level still considered to be within normal limits if I am post menopausal? I have tried researching this and some websites mention (I know I shouldn't really be researching on Google though) that although under 35 is considered to be within normal limits, it adds that those who are postmenopausal and not having bleeding the level should be more like 20?

My apologies that this is such a long post.

Thanks very much.

Best wishes.

[Mammi]

Wow Salubrity,I am soo sorry for all that you have been through .can’t say that I have the knowledge to advise you but I’m sure you will get more replies.Just considering your family history I think this warrants further investigations & your ca125 is the upper level of normal although it could be raised due to all the other issues you have had but personally I would push for more results or discussion with a specialist 🤔Take care Deex

[Salubrity in reply to Mammi]

🙏Thanks so much for your response and really kind words, Deex. Much appreciated and some really good advice too. Best wishes x

[Doglover1410]

I think you should go back to the GP. My mum had breast cancer at 47 (luckily she was cured!) but every time I went to the Dr I was told I was too young for it. At 37 I was diagnosed with breast, then Ovarian at 49!

Even when the GP sent me for an urgent scan (the next day!) he didn’t do my CA125.

When another Dr got hold of it, she did it and it was 436.

What I’m saying is whilst yours isn’t very high if you are worried and have symptoms, go and make a pest of yourself.

Your mum is right we have to advocate for ourselves.

I wouldn’t worry too much, but I also wouldn’t ignore it.

Hope I haven’t scared you, but you know what I mean!!

x

[Salubrity in reply to Doglover1410]

Not at all. Thank you so much for taking the time to reply. I really do appreciate it. I'm so very sorry to hear that you are battling this disease. I pray you are on the road to recovery. Best wishes x

[Doglover1410 in reply to Salubrity]

Thank you, I’m all good at the moment 🤞🏻🤞🏻 x

[Salubrity in reply to Doglover1410]

👍🌈Wishing you continued good health. Take care x

[Lyndy]

Oh Salubrity! I am severely tempted to swear on reading your GPs reason for refusing a ca125!

You are (sadly for you) an experienced and expert patient, don’t let them put you off. If you feel there’s something amiss then trust your judgment. I would be pushing for genetic testing to see if you might have BRCA in your family.

On the ca125 level, I do think it’s different for everyone and as you have a history of inflammatory processes with your endo it may be naturally higher for you (mine is never below 20- which I put down to having RA).

However, the symptoms you describe do fit the OC profile. I would ask for a referral to an on-gynae specialist and complain if you don’t get one. You have a family history which should be taken into account.

I hope you get some answers soon xx

[Salubrity in reply to Lyndy]

Thanks so much for your reply, Lyndy. That's excellent advice re genetic testing..I naively hadn't even considered that 🙈. Thanks so much. 🙏 Take care xx

[Notage]

Sorry to hear your experiences. I definately think the ca-125 is raised and since your operations were so long ago it shouldn't be because of the surgery. I think your doc needs to read up more on ovarian cancer. Even for people with everything removed ovarian and peritoneal can still occur. As others have said I'd be wanting a genetic test to see if there is a genetic factor in this. None the less maybe a laproscopy could be helpful to take a closer look or a PET scan give more detail. Calcifications can also be an indicator your body has been fighting something off. With regards to the raised iron it could be worth checking around haemochromotosis again women who have not had periods for a while can see a build up of iron if they have this condition (and its not always apparent until then as periods obviously had previously decreased iron levels) just a thought (again there can be a genetic component to this. Keep going back until you get the tests you need or change Dr, you need to prioritise yourself and get to the bottom of this.x

[Salubrity in reply to Notage]

Dear Notage, thanks so much for your kind and insightful comments. Goodness you certainly are very knowledgeable. You raise some really interesting points re the calcifications and hemochromatosis. Definitely something to ponder on. I hear what you are saying about being persistent re pushing the GP for more tests. I'm not normally very forthright personality wise but will heed your advice. Thanks so much for your help. Much appreciated. Take care xx

[Notage in reply to Salubrity]

You're very welcome. I would literally print out any information leaflets from reliable sources that give the correct information which you can discuss with the GP. If in the UK definately go to the Ovacome website and give their helpline a call ovacome.org.uk/ they are amazing. Leaflets are downloadable or they can send you some. You can also chat through issues on their helpline. If you speak to GP try and not be confrontational (they don't like being wrong). But perhaps phrase it as you're really concerned about your health amd you've got a significant family history plus unexplained symptoms etc. You really need their help on this. Also maybe print out and read the NICE guidelines so you understand what should happen (and can also share with GP). If they still not budging get really insistent or take someone with you to advocate for you. I'm sure many of us wished we'd pushed harder earlier. You need answers. If in the US Ovarcome are also a brilliant organisation. Good luck.x

[Salubrity in reply to Notage]

Hi Notage, thanks so much for all the really helpful information, hun. That's really helpful. Wishing you all the best xx

[SopSinger]

There is no ideal figure. CA125 varies enormously and the absolute number is almost meaningless, the trend is much more informative. I've heard of ladies with readings in 5 figures, others where it was barely above normal, others where it was within normal limits but they nevertheless had cancer. NICE guidelines say if the CA125 is above 35, patient should be referred for ultrasound scan. cks.nice.org.uk/topics/ovar...

[Salubrity in reply to SopSinger]

Hi Sopsinger, thank you so much for your reply. Yes, as you mentioned, it seems like the CA125 test on its own does seem somewhat unreliable, owing to the levels fluctuating massively and are very different for each individual. Thanks so much for the weblink, that's brilliant. 🙏👍I'm very grateful, Take care xx

[NewtonEmma1900]

I am so sorry to hear of all the trauma that you have been through: from your history I agree with others there really should be further investigation. I was diagnosed stage 3 peritoneal cancer 2 years ago, I ended up in A and E after NHS were too slow. My recurrence was not detected on a ct scan but was detected on a PET scan. It seems to me that there are many gp’s that miss the signs and symptoms.

[Salubrity in reply to NewtonEmma1900]

Hi NewtonEmma, I am so sorry to hear about your diagnosis and what you have had to endure leading up to it. Thanks so much for your very kind words. I hope each day finds you feeling better. Take care xx

[cherrysews]

Hi

Can't believe your GP! I was diagnosed with Primary peritoneal cancer in 2020, and since then have become very fed up with it being referred to as "ovarian cancer". It is NOT in my ovaries at all. In fact, after chemotherapy, and numerous CT scans it would seem that the primary site is in my abdomen, just as you describe.

So, change your GP or get a private consultation. I think the low CA125 means nothing of concern yet, but you need to be monitored for increases maybe every couple of months.

Take care, and congrats on your attitude after all those operations!

[Salubrity]

Hi Cherrysews, thank you so much for your response. I am so sorry to hear you are going through this. I really empathise with you re your frustrations with being 'typecast' by medical professionals etc. Wishing you good health and healing going forwards. Thank you very much for your advice. Xx

[Summergold2]

Wow first off I am so very sorry that you are going through so much so young and so painful! 35 is normal but I would be concerned at 33. it is so different for all of us but goodness you have to be your own advocate and have done so much research on your own! I think it is horrible that the doctor refused todo a ca 125 especially after EVERYTHING you have been through. I don't know if an internal sonogram would help. How about an actual PET scan? My cancer came back and I knew it and my CA 125 was 21 sooooo not to scare you but be vigilant and since there is such a history for you keep pushing!!! I hope it is all nothing. Please let us know the outcome.

Debbie

[Salubrity in reply to Summergold2]

Hi Debbie, thanks so much for your response and very kind words, hun. I am very grateful. I am so very sorry to hear that your cancer returned. Yes you raise a very valid point about the transvaginal scan....funnily enough I requested this as an alternative to the CA125 but the GP insinuated that I was ignorant as why on earth would they request it, if I had all those organs removed 🙈. From what I have read in a number of posts on this forum, It seems that the PET scan is the most accurate in terms of imaging and providing a diagnosis.

Thank you so much for your advice. 🙏

I hope you are recovering well now and feeling stronger each day.

Best wishes xx

[Hope2024]

Hi there...

I'm so sorry you've been going through so much.

First of all, I don't think your worries are inconsequential. They come from a genuine place and we're here to listen.

I was diagnosed with Ovarian/peritoneal cancer in 2011. I'd had a fully hysterectomy with removal of both ovaries some years before. I was told that a woman can get Ovarian cancer from remnants of the ovaries left behind. High grade Ovarian is now assumed to start in the fallopian tubes, spilling out over the ovaries which is why Ovarian cancer very often starts on the surface of the ovaries. Similarly, peritoneal cancer can start the same way although it can also be a primary peritoneal cancer. When we are developing at the embryonic stage, the same type of cells go to make the surface of the ovaries and the peritoneum which is basically two thin layers which are lubricated, sliding over one another. The purpose is to protect the internal organs and help movement within the abdominal cavity. So, it makes no odds if it's advanced high grade ovarian which is usually in the abdomen or peritoneal, which is in the same place.

To answer your question about the CA125 test, the cut off is as you say, 35. When I was diagnosed as late stage Peritoneal/Ovarian, my reading was 15. After treatment, it was 9. So everyone is different and the CA125 is just an indicator of disease progress in an individual. So, say, if a woman is diagnosed with a reading of 36, has treatment, then it's 20. When after six months, it's 340, then it is an indicator that the disease is making progress in some way. It's not a definite conclusion until a scan is done to confirm the result.

Your own reading is 34, so it's just within the normal range. The trouble with a CA125 result is that it's an inflammation reading. And your abdomen could well have inflammation due to adhesions and the like.

You seem to be worried about the possibility of Ovarian and who wouldn't be given a family history that you have. That doesn't mean that you have Ovarian though. It only means that you might or might not have a genetic predisposition to the disease. Ovarian is a relatively uncommon illness and the average GP will only see one case in every five years. The chances are that you won't have Ovarian.

However, I don't think you'll be able to rest until you know for sure. I think it's worth contacting the nurse at Ovacome and talk it through. Due to your anxiety levels, there might be a case for you to have genetic tests, for example, the BRACA test. BRACA is usually connected with being in certain ethnic groups like having Ashkenazi Jewish ancestry. Half of us don't really know who are ancestors are though, do we? Ovacome might be able to talk to you about the criteria for testing.

Also, you could give your GP a copy of your CA125 result and ask for it to be put on your file. That way, you can say that then you could be tracked. Maybe Ovacome can help with that approach too.

Take good care...

[Salubrity in reply to Hope2024]

Dear Hope2024Thank you so much for taking the time to write such a detailed and informative response.🙏 It is really instructive and helpful... there is definitely plenty to consider. 👍 I'm so sorry to hear about your diagnosis and really hope you are now doing ok and recovering well. 🌈

Thank you again for your input. I really do appreciate it.

Take care. Best wishes xx

[Hope2024 in reply to Salubrity]

When I was first diagnosed and for a number of years after that, friends here helped me through as did the nurses at Ovacome. It's something I won't ever forget. I was late stage Ovarian/peritoneal when I was first here and I was given the usual chemo. My prognosis was poor. I had a partial response and told that I was so advanced that I had between several months and two years. I'm still here twelve years later and feeling much better than I did before going to A and E with Ovarian symptoms. I wish you well and hope that you have a clearer picture on how to cope with your debilitating symptoms whatever is causing them. Sometimes just knowing the enemy is a good thing because then you can deal with things better. I had endometriosis for years, starting as a young teenager, and the pain every month was excruciating. It's hard not to be listened to, I know that.

[Salubrity in reply to Hope2024]

Hi Hope2024 Thank you so much for sharing your deeply moving and inspirational story. 🙏 I was really struck by your amazing positivity, fortitude and hopefulness in spite of all that you have had to face and overcome. Wishing you continued healing and good health going forwards. 🦋

Thanks again.

Take care.

Best wishes xx

[Hope2024 in reply to Salubrity]

The people we've lost here have also deeply moving and inspirational stories. They also had positivity, fortitude and hopefulness.. I don't know why I'm here.. I think it's due to biology and nothing else. .. it's a deeply emotional area and one that is very complex. xxx

[Willowoaks]

Definitely get checked out more or get a new doctor. Your symptoms sound like peritoneal symptoms. It could be something else but I’d seriously check more and not wait long. The peritoneal surrounds so many organs so it’s important to do the best to prevent spread to those other areas. Just the CA125 is not the big issue….but for sure don’t ignore your symptoms that you report along with that. Some cancers are slower than others but if you were to have an aggressive type things can change quick. Luckily those are more rare. Hopefully it is other issues but don’t wait just case.

[Salubrity]

Hi Willowoaks, thank you very much for your reply and recommendation. It is much appreciated. That's really helpful advice. 🙏 I hope all is well with you. Take care , best wishes xx

[Vegana]

CA125 , shouldn’t be over 35, so you are fine.

You have lots of health issues, so sometimes it can be a bit higher.

Try to worry less

All the best