I've been unsure whether to post or not, my problems seem so trivial compared to some posts on here, reading the posts and replies have been truly overwhelming.
I'm not expecting replies, I just want to say on here, what I can't say to my family and friends as we are all suppose to be on this "it's nothing to worry about, think positive" attitude, well that's what they are all telling me, but my gut is telling me different.
So 11 years ago, I had a ruptured eptopic pregnancy which resulted in the removal of both the tube and right ovary, for a little while after had a few probs with scar tissue and adhesions in that area, then 6years ago I had my daughter and 15 month ago had my son, all has been fab apart from, I've been bleeding and spotting since October last year ( been putting it down to hormones and contraceptive after giving birth ) always feeling bloated despite always being on a diet and not eating to much to shed the baby weight, to my delight have lost it all! Anyways was sent for a internal scan about my constant bleeding, convinced it was gonna be due to my coil, but no ... Showed a soild adenexal mass with small cystic areas on it, size 54x36x32 mm! Not sure if that's big or not? Was then sent for CA125 and CEA C-19 or something like that, results came back 2 days later and my GP call's and says " all results normal you don't have cancer, enjoy your weekend" ???? Can he know that from these results alone ??? Obviously I'm praying that he does, but I'm a little scared as my mum and nan have both had oc ( both early, nan was 27 and my mum was 40 ) luckily both contained and hysterectomy cleared them both! I'm hoping that I'm still waiting for my gyne referral that I was told I was being urgently sent for ( before the results of the blood test ) . I'm so emotional I could cry every time I look at my children, and I'm normally so strong ☺️.
Wow I did go on a bit! 😂
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Alisha2
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You aren't 'going on' in the least and I'm glad you feel you can post here as you've been through a huge shock and worry and it's not enough for people to tell you flippantly it's not cancer so you don't need to worry any more. You are clearly worried and it would seem nobody has taken the time to explain exactly what the solid adenexal and cystic area is so you're still worried and shaken. I think if I were in your situation I'd book another appointment with my GP and ask them to explain exactly what this is and why they have come to the conclusion that you don't need to worry about cancer. I'm sure you don't have to worry about that but you still need the reassurance from your GP and time for them to go through everything with you.
It's no wonder you are worried about ovarian cancer as your Mum and Nan had it. I'm assuming you've also been tested for the BRCA gene?
I'm sure you'll get lots of other posts with good advice to help you through as we understand it's not a matter of getting good news and being able to forget all about it and carry on as normal. Your case makes me realise how little joined up support there is for women who have had a scare like this and need time to talk through their experiences. I wonder whether you have a Maggies Centre near you or something similar where there will be staff on hand who would have time for you - just a thought.
Thank you for taking the time to reply, I'm going to call my doctors today, to see if I can get an appointment to speak to him. I haven't been tested for anything other then the VA tests, and that was only because the sonography requested it upon her findings, because my mass has formed in the place of which I would of had an ovary (had it not been removed) therefore am wondering , can it even be oc because I don't technically have an ovary for the cancer to be on? So confusing, I will be sure to ask about the BRCA testing!
hiya,reading your post I can kind of relate to what I'm going through at the min,I recently had a scan and 2 cysts have been found,one they say was haemorrhagic and the other on the other side needed further investigation due to not been seen clearly and septates,I've had 2 ca125 tests done which was 39 and 57,the second was done during my period which apparently can raise it as well'after my scan and ca125 I started to worry as my mum had ovarian cancer at 50 but sadly we lost her within 2.5years,,I was sent to a gene as an emergency appointment,I have also been back and fourth to a and e with quite bad pain,,after all the worrying about the worse,they seem to think I have endiometrioma cysts,which can raise ca125 as well as other things except cancer,especially if your pre menopausal,,I'm 35,I'm back at the Gyne today to hopefully find out what the next step for me is,,normal ca125 is less than 35,mine was said to be borderline,,I know it s hard but try not to worry,I've had a very emotional 8weeks thinking the worse due to knowing what my mum went through,but based on my ultrasound scan the docs so far don't seem overly concerned,,hope things go ok for you xx
Thank u for replying too, I'm sorry to hear that your going through all this too, and I'm sorry for the loss of your mum, it must be even more worrying for yourself , I hope everything goes well for you today, and you get positive results, I will be thinking of you today, I really do appreciate you sharing your troubles to help me understand mine!
Blood tests are a good indicator but not conclusive. Cysts can grow from Ovarian remnants or begin on the peritoneum.
I believe you need to know what the cyst is made of even if it's to put your mind at rest.
If I were you, I would re-visit my GP and ask what is going to happen now. I know it's probably benign, which most growths are, but you need to have a specialist tell you what the plan is.
Thank you for replying, it's great being able to her opinions and bounce ideas around, I don't want to upset family members with them knowing , that I'm stressing over it all.
Are solid masses cysts?
I just want to be realistic, I don't want to be a drama, unnecessarily worrying about cancer, but I don't want to disregard the chance of it either, if there's a chance that it can be, I want to be in the know... If that makes sense.
On wed when they found the mass, it was all urgent and suspected cancer referrals to the hospital, blood tests, and now I feel like the doctor has seen a normal result and decided it's not! Which is fantastic , I'm just not sure where that leaves me now as far as a mass is concerned?
Hiya,how old are you if you don't mind me asking,,mine said adnexal masses on my notes which apparantly can be benign or cancerous,,I can't understand how your doc can say it's nothing to worry about from your blood tests,I would be more concerned if they were raised though,like me you had a scan and sound like you've been referred to a gynaecologist fairy quickly,,is that what you are waiting for or have you already seen one,I saw mine within 2 weeks as I was sent as emergency,don't think I slept in that 2 weeks either,but after that appointment I understood a lot more,as soon as I walked in my first question was do you think it's suspicious,,I then had to wait for the mdt meeting for the next step,which I found out today,and I'm gonna have a laparoscopy done middle of August,am sure they will need to investigate further especially due to your family history xx
I'm pleased that you got your date for your op, fingers crossed for you that all will be well and it can put an end to the worry. And hopefully more sleep for you! Especially if u have kids, like me! The lack of sleep with worry and school runs are literally turning me grey 😆🙈
So should I expect an appointment with a specialist first and then a MDT meeting ( can I ask what that is ? ) sorry!
Last wed is when they found my mass, I had the bloods done the same day, from the hospital that day I was told to go strAight to my doctors to give him the report in order for a referral , which I did, and in front of me, he started the suspected cancer clinic form (which frightened me at the time) and said I will hear within 2weeks...... I hope that means I'll see a specialist! And then said he'd call with my blood results on Friday , that was the phone call that said the bloods are all normal you don't have cancer, enjoy your weekend....
thanks for replying, sorry if I'm being over bearing with my questions! X
Yeah I have 3 young boys,my scan was done on a sat and I got a call from my gp first thing the mon,and like you I had my bloods done that same day,,an mdt meeting is basically a meeting which involves gynaecologist,surgeon,radiologist ect,who all discuss between them the next cause of action,I really hope things turn out for you,keep me posted,thinking of you xx
Hopefully what you have is not ovarian cancer but you do need more answers. A CA125 blood test can be a good marker for most but not for everyone. Also do stress your family history of ovarian cancer at your appointments as it is relevant. I have inherited the BRCA gene mutation from my mother which is responsible for my ovarian cancer. I had no idea about it until I was diagnosed with cancer. My grandmother and my aunt both had breast cancer and then ovarian cancer at at fairly young ages.
Sending best wishes and hoping everything is benign.
Hello - that's not going on at all, and we all need to talk/write a bit at times. It's not surprising that people we love want us to be positive but I agree that it's not helpful sometimes. It does sound as though it's not cancer but you need more reassurance than a phone call and there are a few people for whom the tests aren't conclusive and can even be misleading. It sounds as though you need genetic advice too. I was referred to a geneticist and you could ask your GP to do that. They usually say that it can be genetic if people in your family had cancer early. You also need to check whether the gynae appointment is going ahead - they can refer you to the genetics team as well. It's an area where they are finding out more all the time.
Hi Alisha. Just a couple of things: I know someone who has the BRCA gene. She had breast, then ovarian cancer and now, around 25 years on, she's been totally cancer-free. The other thing is that if your CA125 is low, then it's unlikely you have OC (not impossible, but unlikely). My very best wishes to you. Pauline
Thank u everyone , you've all given me some great advice , and I've found comfort in this forum for what has been a worrying week, I've been back to the doctors and his referring me for the generic testing. I'll keep u all posted! Thank you to all those that shared there stories with me, wishing everyone a Happy, Healthy future xxx
It might be worth looking on target ovarian cancer site to find out more about BRAC gene. With your family history I really think you should consider whether to have the test. It may be worth you finding out a bit more about it to take to your doctor who may not know that much about it. I hope the site would not cause you more concern but I do feel your mind will probably not be at ease until you find out what is causing your problem.
Hi Alisha, I am going through the same thing!!! And I'm going to nag them til they keep investigating as Ive learnt on here, some markers do not show up as elevated and the only real way to know is by a biopsy. This forum is awesome for people like you and I who are considered to be overreacting when there is something clearly wrong. Keep knocking on those doors and let me know how you go. Cheers Edith
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