Hi everyone! I was hoping for some advice or shared experiences. About 3/4 weeks ago I noticed a lump/ mass in my pelvic area on left hand side. It’s definitely internal (not a surface type lump), it’s hard, about the size of a large marble, immovable, I occasionally get some sharp tweaks/ pain - but largely painless. I do get some other abdominal pains now and then. I went to the Dr last week and she felt it immediately and said she didn’t know what it was, and couldn’t say confidently what it could be, but it could potentially be a cyst or fibroid. She asked me a lot of gynae questions. She referred me down the two week wait route for an urgent ultrasound, she also ordered blood tests including CA125. I did the bloods and my CA125 is elevated at 42 (so not really high but it is higher than normal range). In meantime by 2WW has been rejected and they’ve said that I am to go down the normal route which will take 6-8 weeks. My GP seemed really frustrated and annoyed at the outcome.
In other people’s experiences and opinions, do you think I should be pushing this further? Is there anything I can do to be seen quicker? Other than maybe going private. The thought of waiting 6-8 weeks is giving me real anxiety.. I just feel a bit on edge. Any thoughts, experience, advice is welcome. Thank you. 😊
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Going private will make at best a marginal difference. Ask your GP to chase, as she's clearly on your side, and you could also ring and ask for a cancellation. My GP was prepared to challenge when I was rejected for a (non-2ww) referral. Sending hugs.
Thank you for replying to me, I really appreciate it. I have booked a private appointment for Friday. Apparently my nhs gp has tried twice now and they have rejected it both times, so I’m taking matters into my own hands. Even if it is nothing, I feel like I need to know much sooner. I hope you’re ok and thank you again 😊😊
My personal opinion is that going private would speed things up and that you may wish to investigate with a private doctor whether this is correct.
I agree with SopSinger that you should ask your GP to challenge on the basis that there is something in your tummy and no one can be sure it is not cancer until it is investigated. Even when they did my initial transvaginal scan in the hospital and my CA125 was over 400, the hospital doctor was still saying there was a possibility it could be cysts (mine were 9 cm etc), which I think is probably what they always say as it is, genuinely, still a possibility. There is every advantage to you and the NHS if it is cancerous to catch it early and not find, as I did, who had no symptoms, that it is stage 4.
Hopefully, it will be a cyst, but if not, stage 1.
You might also ask PALS at the hospital if you can be challenge this yourself as well as your GP. Every hospital has a PALS service. But probably your GP's challenge will be less easily fobbed off.
Two and a half years later I am still here and No Evident Disease. I met a lady recently who is 10 years post a stage 4 diagnosis.
Hoping for you it is just a cyst. Best wishes, Emma x
Thank you so much for coming back to me. This community is really lovely 🥰 I am sorry to hear about your diagnosis, but really glad to hear that you are doing well and have no evidence of disease now, this is wonderful. I have booked a private appointment for Friday, I need to know sooner and feel it is the only way. I’d never known of PALS, will definitely bear this in mind too. Thank you for your support and advice xx
i totally agree i feel i learning about how our system is real broken..and yes you must advocate for yourself...even when i have done so road blocks ...i had to back track my oncologist make sure he done his job...and all so fustrating...right now dealing with bloating just before my next round of treatment..having had a drain prior to my first..when i spoke to my oncolgist he said he thought i hadthe flu i went to er and had my stomach drain i was there for 11 hours...so i just worry all the time now i am bloated again i will have him examine me today...just so hard
You’re so right. Sometimes I think it’s all too easy to feel like we shouldn’t push, and they must be super busy etc, but this is so important. From what I have read so many people get pushed too far down the line. Thank you for replying to me and I hope you’re keeping well.
Keep pushing! I was lucky 10 years ago when things were very different. Similar lump in my abdomen but on the right. It may have been a cyst but my doctor and I needed to know what it was, not what it might or might not be. I had CT scan and a biopsy and in over a 5 week period. Still keep my fingers crossed!! Xx
I’m so glad you were seen and treated so quickly. I am going to push harder on this based on everyone’s feedback. I’ve also taken matters into my own hands by booking a private gynae appt for Friday.
I saw the private dr Friday evening. The appointment went well. He has referred me for an ultrasound which I should hopefully be able to have in the next week or so (need to book it tomorrow). He said not to think about the CA125 marker because I am young (I’m 35) and it is likely raised for any of the other reasons it can be raised. He also did an internal exam which seemed ok. In the meantime my NHS ultrasound (according to the app) is estimated for July!! So I’m glad I’m able to do this quicker. I’ll let you know how ultrasound goes ☺️ Thank you for asking, I hope you’re keeping well.
I was in a similar situation and couldn’t bear waiting. I went privately it was about 250£ for initial exam and tests, then £150 for consultant. I was glad I did because I then had leverage and my op was done within weeks under the NHS. My family chipped in for the initial tests so it was the best £200 I ever spent. I have never gone privately for anything in my life so it took some persuading. Now I would say, If you can afford it do it. There’s no point standing on principles where your health is concerned. Good luck.
Thank you for your reply. You’re so right. I have actually booked a private appointment for Friday. It may be nothing to worry about but I don’t want to worry so the sooner i can find out the better. I hope you are doing ok now?
I would suggest complaining to PALs at the hospital to which you were referred. This is not good enough, OC if allowed to develop is deadly… why would they risk that for you when they have a chance to get an early diagnosis should that turn out to be the problem?
The fact that your ca125 is raised should be ringing alarm bells, no matter that it is comparatively low.
If they won’t do it, then see if your GP can refer to a different hospital.
Having said that, take a breath, hopefully it will be cysts or something else…the point is that they can’t tell while you are not being seen xxx
Thank you for your reply, I appreciate it. I hadn’t heard of PALS before this chat, and I didn’t even think you could challenge it to be honest. Don’t know why, I just didn’t think of the option! I am surprised by the rejection.. I don’t know why they’d want to risk it either! I have actually booked a private appointment for Friday because I can’t wait. It is hopefully nothing more sinister than a cyst but I need to know that asap x
I’m glad you’re going ahead with a private consultation! I had a small pain in the vicinity of my left ovary. At first it was intermittent but after six months became constant. My go dismissed it and I tried to get a colonoscopy but it took a year. Eventually I saw a gynecologist.
Hi there - I felt a lump on my left side the day before we were due to go on holiday. (It was not like yours, it was about 10cm x 5cm, like a little hill rather than a marble.) I knew I wouldn't get a same day NHS appointment so I went to a private GP who referred me for a private ultrasound which was booked for the day I returned from holiday. The doctor doing the ultrasound said I needed an urgent CT scan and at this point the private GP spoke to my NHS GP and I got my 2 week referral. Your cheapest option would be to ask your NHS GP, who is clearly on your side, to refer you for a private ultrasound (mine was £190), or maybe check the cost of a CT scan with contrast, as that would give a more definitive answer.
My 2 week referral took me to a gynaecologist who had no cancer speciality and she referred me for the CT scan, despite the ultrasound report having already said it was needed, so I did feel that this was 2 weeks wasted, as my CT appointment was another 2 weeks away! If I'd had a private CT scan it would have saved 4 weeks. (I was stage 3C and have had chemo then major debulking surgery and an now back on chemo.)
I truly hope that your lump turns out not to be cancer, but the sooner you have answers the better.
Thank you so much for your reply and for sharing your experience. I am sorry about the experience you had too. I have booked a private appt for Friday, I need to know sooner and based on everyone’s responses this seems like a good idea. How are you doing now? I hope you’re ok.
Well done for getting something booked privately, I shall keep my fingers crossed that all is well.
I am doing better than I thought I would be at this stage. It is 6 weeks since the operation and I have been back on chemo for 3 weeks, with 6 more to go. I ended up with a stoma (an ileostomy, so in the small bowel) and that has been quite tricky. I was told that chemo would be harder post-op but it has not been too bad so far. I'm just ticking off the weeks and looking forward to getting to the end of this stage. If you do end up on this road, I can tell you that it is all do-able and you will discover that you are stronger than you think!
Thank you, I appreciate your reply. I’m sorry for what you are going through, it sounds like a very tough journey; but I am glad to hear that you are getting through and keeping strong.
I’ve been referred for an ultrasound within the next week or so by the private consultant. He didn’t seem too worried about the lump/ blood results, but he said it’s best to obviously have the ultrasound to check everything properly; which I am grateful for and would have really pushed for based on everyone else’s responses and support anyway.
Appreciate your time to message me. Wishing you all the best 💛
I don’t know if you receive any updates in here or not. But firstly, I just wanted to say thank you for all the support and advice, it’s hugely appreciated and it’s been really helpful. Thank you. Secondly, I had my ultrasound today. The pain and discomfort on my left has been constant. She said she thinks the lump is a swollen lymph node but looked like nothing to worry about. Then she did the internal ultrasound and didn’t say anything. The only time we spoke was when I said it was painful and uncomfortable when she pushed the transducer to the left side (felt like sharp pain), the other side of my pelvis and centrally felt fine, but the left was painful and that’s the side that I am experiencing daily pain/ discomfort. She didn’t say anything. I got changed and thought to myself I’m going to ask her afterwards if she can indicate if all looked ok.. but she had left the room. I’ve got a few days to wait for the report to be produced and then I’ll hear from the Dr (this is all through the private hospital still - priory, Birmingham). Bit anxious about what that could all mean but just being patient and waiting now 😊 Anyway, just thought I’d provide a little update!
Thank you for checking in! It was good news, everything with my ovaries is fine 😊 The lump has reduced in size so they said it was a very swollen lymph node. I still have left sided pain but I have recently been diagnosed with Crohn’s disease so it is likely due to my bowel. But in terms of my ovaries, womb etc, everything is as it should be and nothing sinister which was a huge relief. Hope you’re well x
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Just had ca125 blood test and result of 145 - need info
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