would like some reassurance please!: so a... - My Ovacome

My Ovacome

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would like some reassurance please!

Kelb123 profile image
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so a little about me ~

I had dermoid cyst removal which resulted in a tube being removed in 2006.

In 2013 I was diagnosed with hormone negative, HER2+breast cancer and underwent a mastectomy and diep flap recon followed by chemotherapy and 10 month of herceptin, I'm now nearly 9yr clear with no evidence of reoccurrence.

they said I would most likely go through early menopause but actually became pregnant shes (now 6) but after having the covid jab my periods have become irregular, sometimes early sometimes late, the colour seems different a little but otherwise normal as I presumed I could be perimenopausal, I sometimes get a pain in my ovary and was getting worried so I went to my gp who ordered ultrasound scans and bloods, the ultrasound showed nothing at all. The bloods however have shown a slight increase in my CA125 levels, so given the fact I went because of my ovaries I'm now absolutely crazy scared, even though I have no other obvious symptoms.

my question is, I had my bloods done 2/3days before my period came, can being immediately due on affect the CA125 levels?

I understand this question may come across a little selfish given some of you have already been diagnosed and I apologise in advance, I hope you can understand my worries of a reoccurrence and my anxiety right now.

thank you for reading this far



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Kelb123
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delia2 profile image
delia2

Hi. You’ve been through a lot already. I don’t blame you for worrying. The fact that nothing showed on the ultrasound is a relief. Yes CA 125 can be raised for a number of reasons other than cancer. I understand you want to feel that you don’t need to worry but most of us here have had the opposite experience to yours. We struggled to get tested. So my reaction is that you shouldn’t just forget about this. In three or six months have a repeat test. Also have you had genetic testing? If you have a relevant mutation you might want to have your remaining ovary and tube removed for prevention. Xx

Kelb123 profile image
Kelb123 in reply to delia2

Thank-you so much for your reply, I am being re-tested in 2 weeks. From what I've read it could just be due to being so close to my period but I wanted some reassurance from people with experience.

It's mind boggling how people have difficulty being tested it's a simple blood test and our rights to have access to these resources. :(

Kelb123 profile image
Kelb123 in reply to delia2

So I went for my repeat blood test today and I asked what the CA125 level was on the last one, I told her I have done some extensive research and reading and asked if she would like to know what medication I'm on incase any of the medication was likely to alter the results, I was about to mention I was actually 3 days away from my period last time also which ive read can sometime cause a rise but she was just so abrupt and horrible. She said my last CA125 was 32... I'm 😕 confused, because I thought that would be within the normal range however she said its considered high after 30? I feel like I've worried myself for nothing. I'm glad the doctor is double checking, but given the fact my doctor knows I'll read and research she could of told me my level 2 weeks ago!

Xx

delia2 profile image
delia2 in reply to Kelb123

Technically 35 is the highest normal but everyone is different. Mine was 8 at diagnosis and 6 at recurrence. I wish it was a marker for me. Well hopefully they’ll follow your ca 125 and it will stabilize and you can stop worrying though you might want to have that tube removed. Xx

Kelb123 profile image
Kelb123 in reply to delia2

Wow, so for you CA125 was not relevant in helping diagnose. I have read a lot about this, it is rather common for people to have cancer and the ca125 to still be in normal levels, :/ I'd be happy for them to take all my bits now, they serve no purpose only stress.

Hope you ate well. Thankyou for you reply xx

bamboo89 profile image
bamboo89

The Covid vaccines (and Covid infection) are known to affect the menstrual cycle temporarily; it usually restores itself within a couple of months, but you are, as you say, peri-menopausal, and that brings its own changes to periods, including regularity and flow. Hopefully, when you have another CA125 check, your levels will be normal, especially if it was only slightly raised at the time. Its good that you got things checked out...

I;m quite curious, though, as to how you know its your ovary that hurts ... both my ovaries were cancerous and I was late stage (4b) at diagnosis, and I never felt a thing in terms of ovary pain...

Kelb123 profile image
Kelb123 in reply to bamboo89

Well I only have one ovary anyway so I'm kinda used to feeling normal camps and pains on one side, It only happened 1 month and it was like sharp stabbing pain that lasted a few seconds but persistently through out my cycle not just ovulation. I don't know why I just presumed it was my ovary as it was one sided. That's what I told my doctor anyway. She didn't correct me. I've not had other symptoms as such just irregular periods and colour is browny to begin with, where as before it was pinky, I dunno, at first I just put it down to going through the change! After posting this I called my doctor as I'm so worried and she said that I shouldn't worry its probably down to having heavy periods???More scarily though I read a study on the CA125 protein and it can not just detect ovarian cancer per se, it can detect metastases too from breast, liver, lung and all kinds of things. Hmmmm .... some people can have naturaly high levels of CA125 too.

I felt pain with breast cancer too and never had a lump as I had invasive dcis. People's bodies manifest symptoms differently, unfortunately. Nothing I've experienced has been text book.

Where are you on your journey? I hope treatment went well and you hough the worst bit :) xx

bamboo89 profile image
bamboo89 in reply to Kelb123

Thanks for asking - I had extensive surgery nearly 5 years back now, but its recurred twice, so two lots of chemo. Probably need more shortly if I agree to have it - its terminal either way in my case, so palliative chemo only, but I''m much, much older than you and no one gets out of here alive anyway do they. I would have preferred heart trouble like my sister has as my exit route, but hey, we don't get a say, do we...

You're right about the CA125 not being entirely reliable as a marker for ovarian cancer. If it was, it could be used as a standard check for women periodically to try to catch it earlier. Its more like a general inflammatory marker which may get very high if you have OC, but not nearly so high with other inflammatory causes.

I get stabbing pains in the pelvic area occasionally, usually on the right, but they've always been caused by my lower back, which is often very irritable without my being aware of it. Scary when it happens, you jump straight away to thinking its cancer related... Your description of what your period loss looks like is familiar - I remember that after the age of about 45. And hot flushes that started at 47 and went on for years and years, and now I notice chemo triggers those off again, what a pain🙄

Anyway, fingers crossed for you that its nothing and you don't need to be here, the club no one wants to join🤗

Kelb123 profile image
Kelb123 in reply to bamboo89

I'm so sorry to hear that... palliative sounds so scary and final, but it's never over till the fat lady sings!! Chemo is awful, if I'd of had to have of had another round after the 1st one I'm sure that would of seen me off before the disease itself, you are a proper fighter, so keep going. Ya got this.

Thank you very much for sharing your story and taking the time to reply, I appreciate it. I will update this once I have the test results back.

Xx

bamboo89 profile image
bamboo89 in reply to Kelb123

Yes, chemo is hideous and I don't like the after effects on the body either, never mind the side effects.. I'm not really a fighter, haha, I refused chemo after surgery for two years, they all thought I'd be dead within a year. Dunno why I'm not, but clearly I'm not, haha... I gave in and had some chemo when I got ascites. But you know, I think the chemo they use for breast cancer is worse, judging by what my sister in law went through with hers. Looking forward to the update...

Kelb123 profile image
Kelb123 in reply to bamboo89

So I went for my repeat blood test today and I asked what the CA125 level was on the last one, I told her I have done some extensive research and reading and asked if she would like to know what medication I'm on incase any of the medication was likely to alter the results, I was about to mention I was actually 3 days away from my period last time also which ive read can sometime cause a rise but she was just so abrupt and horrible. She said my last CA125 was 32... I'm 😕 confused, because I thought that would be within the normal range however she said its considered high after 30? I feel like I've worried myself for nothing. I'm glad the doctor is double checking, but given the fact my doctor knows I'll read and research she could of told me my level 2 weeks ago!

Xx

bamboo89 profile image
bamboo89 in reply to Kelb123

Well your doctor sounds like a right charmer, not... 32 is'high'... seriously...? It's under 35, so it's not high in my estimation. Maybe she was irritated by your telling her about your research, some doctors don't like that, or she thinks you;re just one of the 'worried well'. The CA125 result is not quick, even my oncology department has to wait 3 days after blood is taken even though they take the bloods. Let's see what the most recent bloods show - presumably, if its risen, she'll be in touch, because that's what matters, if it keeps rising..

OvacomeSupport profile image
OvacomeSupportPartnerMy Ovacome Team

Dear Kelb123

Thank you for your post. I’m really sorry to hear that you’re feeling so scared following your recent symptom and blood test results. I can see that several members of the forum community have shared their thoughts and experiences with you, which I hope has been helpful.

As has been mentioned above, CA125 is a non-specific marker meaning that it can be raised for a range of reasons that are unrelated to cancer. This includes fibroids, ovarian cysts, endometriosis, many inflammatory conditions - and having a period. Some GPs may advise that the CA125 test doesn’t take place immediately before or during a period as it can interfere with the result and I can see that you have a repeat CA125 test booked in a couple of weeks which I hope will be helpful. We have some more information about the CA125 test in our information booklet about tests for ovarian cancer, which can be found here: ovacome.org.uk/tests-for-ov... .

We encourage anyone experiencing symptoms that are new, unusual or persistent for them to speak with their GP for advice so it’s great to hear that you have already done this. I wonder if you have had the opportunity to discuss your worries about the CA125 outcome with your GP? They should be able to provide personalised guidance whilst considering your individual medical history and circumstances.

If you would like to speak with a member of the Ovacome support team, please don’t hesitate to get in touch with us. You can call our support line on 0800 008 7054, email support@ovacome.org.uk or message us directly through this forum if you prefer. We are here Monday – Friday, 10am – 5pm, to talk through any concerns, provide information resources, help to prepare for appointments, or just have a friendly chat.

Best wishes

Annie – Ovacome support

Kelb123 profile image
Kelb123 in reply to OvacomeSupport

Thankyou so much for your reply ❤️

Kelb123 profile image
Kelb123

Today my CA125 was 29. I am so relieved x

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