Just looking for some insight from people who have lived this...back story...endometriosis since my 20s. Surgery in 2012. Stage 4 Endometriosis with severe adhesions. Cysts came back and I could tell adhesions had as well quickly after. Plan was to get surgery post menopause. Since 2021 this has been a topic and trying to get someone to talk about it. Meantime, cysts monitored. Stable. In January 2024 they seemed mildly bigger (by mm). By the time I got a gyencologist to look at me I had a 12cm solid mass in my pelvis (in addition to crazy endometriosis and adhesions). That is where I am now. Surgery scheduled for end of November. Terrified! I have questions questions questions and am so scared and sad.
1) Were your tumor markers normal? My CA-125, CA 19-9 and CEA all normal. But I don't think that means anything (which raises questions for me but that is for another day!!!).
2) What did your CT scan show? And does that change the surgery? I had mine on Friday night. No results yet.
3) How was the surgery? Will I survive it?
I know these are all big questions but this is all new and I was sure I would not end up this far down this path given how diligent I was being. I am so so so sad.
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coop1969
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so sorry to hear your news . However , whilst it is terrifying Please try to remain positive . I had ultra radical debulking in 2020. It was a 10 hour operation and basically everything in my abdomen was removed . ( obviously , not my stomach , liver or spleen ) I had to have a stoma which is at the end of the small intestine . Sounds awful but it is easily managed.
I understand that surgery depends on how much surgery you had before and how much scar tissue is left so I expect they are awaiting CT scan results to decide what to do and it may not be ovarian cancer.
I shall say prayers for you and please let us all know how you get on . 🙏🙏❤️
Hi, we have all been where you are and it's very frightening so sending you a big hug. I had the surgery almost exactly a year before yours is due and when they did it they found that I also had endometriosis, which had never been diagnosed sadly and they believe that this caused a cyst that then became cancerous but that does not mean you will be the same. [I didn't know/compute that my periods becoming excruciating painful was something I should investigate and can appreciate how you must be feeling having been 'on it']. I don't know what stage the endo was. On the cyst size - mine was 15cm x 12 x something (the size of a small watermelon) but even at that fair size it was still contained within the ovarian capsule, which is really good! So fingers crossed if yours does turn out to be cancerous it will be the same for you! I was found to have no evidence of disease spreading when my surgery was done and the post chemo scan 6 months on also found no evidence of disease. I had adhesions to the bowel [sigmoid colon] but they didn't need to remove any bowel at all. So there is hope I promise you! . All becomes clearer once one has had the surgery. It's a horrible wait, but you will be so relieved when it's done. PS we as humans have A LOT of bowel so even if you had to have a 'resection' that isn't as bad as it sounds and plenty have it done without the need for a stoma, and stomas aren't necessarily permanent either.
The CT scan will inform the surgery yes [I guess whether you need a full hysterectomy vs say removing an ovary?] but I don't think they can say for certain whether it is cancer or not until they remove the offending organ[s] and do biopsies. They also cannot stage you until surgery as they need to go in and look at everything to look for any possible spread. I actually had what is called a frozen section where they do a biopsy of the cyst/tumour during surgery, I assume this was to inform whether or not it was actually cancer and whether to remove everything [uterus, ovaries, fallopian tubes, cervix and omentum], which they did and take pelvic lymph nodes out to biopsy, which they did. But I may be wrong on that and a nurse on here can explain more! Surgery is hard, menopause is hard but you can do it!
My CA125 and CA19-9 markers were both raised, both in the 60s but I know that at least one could have been raised by the endo in my case or any type of inflammation. They were both low after surgery and are still very low. I think what they do is look at everything together. In my case, the CT scan found the mass, a fibroid I also had that I didn't know I had, and either the CT scan or the TV scan found borderline cancerous hyperplasia of the womb which had just turned into early stage cancer at the point of surgery [completely separate to the OC].
I was where you were desperately trying to compare myself to others to look for clues and of course this is completely natural, but time taught me that we are all different. It's crappy having a scan on a Friday as you have all weekend to worry about it. Try and put your trust in the medical team who will do their very best for you and we are here if you need us.
Emily, thank you so much for this detailed response. It is nice to know I am not alone. My tutor is around the same size of yours. I am just hoping it is contained. And you are right, they will do a frozen section during the surgery and then decide if they continue. I have deep endometriosis that has shown up on this scan and they will have to remove it if this is cancer (which they highly believe it is) so that part makes the whole thing trickier. I just want this out of me though so I can get to the next step! But first the results of the scan. Having massive anxiety about scan results. I never thought I could have this much anxiety!
Ah I hear you. Try and breathe and do something nice. I know it's hard. I actually had a CT scan yesterday as I have symptoms that could point to a recurrence [exhaustion, pelvic pains, urgency to wee] but they could also be caused by 2 other issues, one related to my kidney and another to my colon. I'm off work this week so trying to distract myself by hunting for curtain material. I found that ashwagandha gummies helped hugely with the anxiety but do check with your nurse/GP if you're going to take them. The NHS can get funny about all sorts of things like supplements especially when we're on chemo but I took them at the time you're at.xx
Sending you all good vibes for your CT scan results. I meet my doctor in a few hours so will hear then. I love the hunting for curtain material. I have designed a new laundry room! LOL
Hi Coop1969, sorry to hear you are so scared; the lead up to correct diagnosis is the worst, however bad it is or isn’t. Once you’ve been diagnosed then you focus on that and what needs to be done. It may just be a benign cyst that’s grown, my cyst grew and it wasn’t malignant, I just so happened to have OC in the other ovary that was found by accident. In answer to your questions:
1: my tumour markers were normal, my CA125 was only 10 at its highest.
2: my CT scan showed no evidence of advanced disease but I did have microscopic spread, which was found in my omentum. If your CT scan showed advanced spread, for example on your bowel, liver etc then that would change the surgery in that it would be more extensive obviously and more tissue may have to be removed as opposed to the standard removal of ovaries/tubes/uterus and omentum
3: I had a full hysterectomy plus omentum removed, obviously I’d already had my ovaries removed that’s how they discovered the OC. I think it was about a 6-7 hour op, done laparoscopically and, apart from constipation, I recovered well. I was discharged the following day too 😊.
Please let us know how you get on, I’m sure you’ll be fine, I’d never had any health problems or operations until I got diagnosed with this last year at nearly 54! The only times I’d been in hospital was to have my 2 daughters so I was terrified, but honestly I recovered well and without pain. Sally x
Thank you!!! I am 55 and the only surgery I have ever had is the laparoscopy to remove the endometriosis in 2012. This one is so much bigger and I am very nervous so I thank you for sharing your experience!!!!!!!!
I also had endometriosis since my 20s with several surgeries to clean it out (including a hysterectomy). A couple of years ago I found a lump in my abdomen and it took a long time to get a correct diagnosis (they told me it was just endometriosis, when it was a tumor - clear cell carcinoma). By the time I was diagnosed, I was told the tumor was inoperable due to size and it being embedded in my abdominal wall. (It was so large that they weren't sure they would be able to close me up after surgery.) Chemo didn't work for me, but immunotherapy shrunk the tumor enough that I was able to have surgery November last year. My CA 125 was elevated above normal, but my oncologist told me that it is not a perfect test - the important thing was the trend of the results.
Your CT scan will guide the doctors to know exactly how to go about the surgery. It is definitely scary as you wait for results. My surgery went so much better than I ever expected. Even though they had to remove much of my abdominal muscles (replaced with surgical mesh), I did not have any mobility issues. I was worried about what my life would be like, but if you didn't know I was missing my abdominal muscles, you would never guess.
My surgeons were amazing and my entire cancer care team has been awesome throughout my entire battle. Sending prayers your way that everything goes smoothly!
1. Unfortunately you can have normal tumour markers despite having cancer, however the fact that all of yours are normal gives you a better than average chance of it being benign. You won't know until surgery. 2. My CT showed a 15 cm cyst on right ovary, plus some hydronephrosis in right kidney (caused by pressure from the cyst, resolved after surgery). Obviously they will carry out surgery as indicated by the scan. 3. Of course you will survive the surgery and they wouldn't suggest if you were too high risk. It won't be fun, but the medical and nursing staff, physiotherapists etc. will be around to help you through each stage. It will be easier than you think. It's all overwhelming when you are facing it for the first time, but the doctors and nurses do these surgeries every day and you'll be in safe hands. Sending hugs! (Oh and in case you were wondering, my surgery was 18 years ago!)
you’ve gotten excellent feedback from the other posters. I just want to add my warmest thoughts as you start this process. When I was diagnosed, I was so envious of people who had “normal” lives - who weren’t constantly worried about their mortality. I couldn’t imagined my life returning to joy and levity again.
I’m happy to say that November 2024 will mark 2 years since I was diagnosed with Stage 3 HGSC… and I am doing well. The hysterectomy I had was a much easier recovery than I expected, although I did have reactions to chemo each round. It was hard but do-able. I had to remind myself that many women have walked this journey before me - and that gave me perspective and hope.
No matter what your outcome, I want to remind you that you are stronger than you might think. You are in a really difficult moment waiting for information and my heart is with you. I haven’t found a panacea for the anxiety, but I have incorporated some tools that help me cope with it. Recently I listened to the audiobook “Breath” by James Nestor. Breathwork has been helpful for me when the anxiety peaks. Hopefully knowing you’re not alone helps you. 🥰
Tumor markers can be normal I had the radical debulking I'm much older in my 60's I had silent endometriosis never had symptoms thru the years. For me aside from asking them the night after surgery for a better pain killer (good stuff) I was up and walking the next day up and down steps when I got home I highly suggest a binder I got a better one on Amazon then the one they give you at the hospital mine was a 5 day hospital stay as you need to go number 1 & 2 before your discharged you've got this the unknown is very scary
I had a radical hysterectomy for stage 3b OC in Oct 2007. I’m the biggest wimp and cried so much, I was scared of everything., but you know what, what I was scared of was fear of the unknown. It’s really not that bad, you will have pain meds and trust me you are stronger than you realise. Good luck xx
I had my surgery 2 years ago. I was terrified. CT scans had revealed endometriosis, fibroids and a 42cm x 33cm complex cyst. I had a radical hysterectomy with biopsies of my omentum, peritoneum and lymph nodes. The surgery took 6-7 hours. I was up and walking in the ward the next day. I had a 3 night stay in hospital. Recovery was far easier than I thought it would be. I felt lots better after my operation. I walked a lot, went skiing 3 months after my operation and returned to work the week after skiing.
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BSO Surgery tomorrow for complex cyst
