New to Forum - Gynae/oncology urgent referral

Hi, I've just joined the forum and wanted to introduce myself. I have a diagnosis of 'severe' endometriosis and have previously had my right ovary removed along with a large dermoid cyst, and large chocolate cyst drained on Left ovary. Tomorrow I'm seeing Gynae/Oncology for the first time on a urgent referral as an MRI scan related to a rheumatology issue picked up that one of the masses on my remaining LEFT ovary needs further investigation. My CA125 is at 463 (it was at 175 when I had endo issues before). I am on Goserelin (GNHR analogue treatment) for the endo, so I don't think it's the Endo causing the raised CA125. I'm very anxious about potential diagnosis, and would welcome any advice on the sort of questions I ought to be asking tomorrow. Thank you.

19 Replies

  • Very sorry to hear what a horrible time you're having. This time of not knowing is very, very difficult.

    For me the urgent referral appointment was not able to answer any questions. I had a sample of my womb lining taken and a promise of a phone call once the multi disciplinary team (MDT) met the following week. It seemed that nothing definitive could be told to me until after all these MDT experts got together. So I think my question would be "how soon can you tell me what will happen next?"

    I hope they can perhaps tell you more than in my case but wanted to share my experience so you are prepared should it be similar. Do post again here if you feel we can support you, everyone will be hoping all the very best for you. Xx

  • Thank you for your reply. I'm hoping that because I was 'already in the system' so to speak they may be able to tell me a bit more tomorrow. I know the MDT met on Monday, and my appointment was scheduled after that meeting. Thank you for taking the time to get back to me, I am preparing myself for a few more weeks of 'not knowing'...

  • That is really good that the MDT team will have already met as I think you'll have a much more informative appointment.

    For me, and i think nearly all ovarian cancers you don't get an absolute diagnosis until after surgery, though they did tell me that they suspected cancer. They were right, but mine turned out to be stage 1, very probably curable, so try not to waste as much time as I did imagining the very worst should you find yourself in the same circumstances.

    The questions I would ask if you are told you need surgery is when, and whether you could be considered for an earlier date should there be any cancellations. My surgery got brought forward for a cancellation, which meant less time worrying.

    Very good luck tomorrow x

  • Thank you, that's a good tip about mentioning cancellations - I just want to get on with it asap! x

  • Hi there, waiting for any result is a very distressing time. It's really scary not knowing exactly what it is you're dealing with.

    It's good that the MDT will have already met before your appointment. I know nothing about your age or fertility status.....but I think the suspicious mass will need removing and testing. They can never be sure until they get the pathology report back.

    I suggest you take someone with you, perhaps write down some questions beforehand or even take notes during the appointment. It can be overwhelming I know.

    I wish you well for your meeting x

  • Thank you Donmk. I'm 47, so thankfully fertility isn't an important consideration for me. My husband is coming with me, and I shall take notes. thank you for responding x

  • No problem. I should also say that I too have severe and extensive endometriosis. The damage from endometriosis for me was immense.

    I had two surgeries for the endometriosis, and this is how they found my tumor. My ca125 had been raised in the past but they put it down to cysts....hadn't been diagnosed with the endometriosis at that time. Ca125 can rise for different reasons.

    I then was straight back into surgery to remove the affected ovary, fallopian tube and omentum. This latest surgery was only in January. It all happened so fast....... the waiting is the worst part for sure.

    Do let us know how you get on... x

  • I'm sorry to hear you've had such a rough time. The impression I got today is that I likely have 'early' ovarian cancer, which might not have been picked up if it wasn't for the endo, so I suppose I should be grateful for that for now

  • Hi there, that sounds as 'positive' as it can be in the midst of things. I'm so sorry you're looking at OC, but if it's early on the prognosis can be really good. I think I said, I am not long out of surgery so not exactly a fountain of knowledge but the support in this group is amazing. They told me to feel lucky too because it was only caught due to the endometriosis surgery.

    I won't lie, it's really frightening..... and it's okay to feel like that. One day at a time. Get through your surgery, wait for the results.... it's all you can do for now. Do you know when your surgery will be? Are they going to take out 'everything'?

    Virtual hugs your way x

  • He said that if cancer was confirmed it would be full hysterectomy, Omentum and possibly parts of bowel if they were involved.. think he was trying to prepare me for all eventualities!

  • That's the gold standard surgery x

  • What does that mean?

  • I mean that's 'standard'

  • Welcome to this forum. I hope you'll find it the source of friendship, experience and wisdom that so many of us have.

    You're probably already several steps ahead of many of us, knowledge-wise, if you've been living with endometriosis. And it's great that you're already in the system.

    I think practice does vary from place to place, but when I was sent off for urgent scans, on two occasions, the person doing it did intimate to me that it didn't look good, so you may get early feedback, you never know.

    Waiting is the worst, and I so understand you wanting to get on with it!

    Good luckx

  • Hi and welcome to our forum. The other ladies have covered the main points ie, having someone with you, making notes, asking when surgery will be and if you can be considered for a cancellation. The only other thing I can recommend is to make a list of questions you want answered and remember to ask them.

    Good luck. Let us know how you got on. Ann xx

  • Welcome to our forum. It's good that you are already au fait with medical systems. Depending upon the discussions the MDT had of nature of the suspicious tumour, they may either suggest a biopsy or removal. It's only once the individual cells have been examined under a microscope can a benign or malignant diagnosis be made, and if malignant, the exact type of cancer.

    Fortunately, you should find out today what the next steps are. Waiting that's quite difficult to cope with.

    All the best!

  • Having a similar medical history... If they do suggest having a full hysto... I would highly recommend it. As in my case, they kept the ovaries in only to have to deal with additional issues and then ovarian cancer.

  • thank you

  • Thanks for all your helpful comments, it certainly helps to know we're not alone, but I'm so sorry that so many are dealing with horrible disease! I'm back from the hospital, a little further on I guess, but not much. It turns out I haven't been discussed at the MDT yet after all, in fact all my notes and scan info from other hospital were not available, although the consultant had got the info about the MRI scan that I had had for rheumatology reasons. Given that and my CA125 he gave me the impression he thought cancer was likely. Next thing will be a 'CT Staging Scan' of my pelvis/abdomen/chest and then I will be discussed at the MDT meeting and seen shortly afterwards. Consultant hoped this would all happen within the next 2-3 weeks. He said that if scans confirm need for surgery it will be full hysterectomy with removal of Omentum, and possibly sections of bowel. So, more waiting... but at least I'm 'in the system'. Thanks again

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