I am 54 yo & recently found out that I have a large cyst coming off my ovary. A couple of months ago it was around 13 cm and yesterday it measured at over 16 cm. I have been trying natural treatments -Chinese herbs and acupuncture, diet to see if I could shrink it. But obviously that hasn’t worked. :(.
So now I am faced with having major surgery to remove the cyst and possibly a total hysterectomy. I just feel so anxious all the time. I wake up with my stomach in knots and spend most of the day googling diagnoses, survival rates etc. I know it doesn’t help me but I feel so out of control. The CAT scan said to rule out Mucinous cystadenocarcinoma.
I also have a large fibroid a little bit smaller than this cyst. It has remained stable but have been bleeding the past 4 months. Since the fibroid is outside of the uterus my doctor doesn’t know why I’m bleeding. I am perimenopausal.
I am waiting to hear on Monday or Tuesday when my operation will be. Probably in the next 2 to 3 weeks hopefully not canceled by the coronavirus. I am just so terrified. I am one of those people that does everything all natural. All natural childbirth, vegan, no chemicals, all organic everything etc. I get nauseous just thinking about having my blood taken.
The thought of me being in a hospital having a major operation and having my body carved up is more than my brain can handle. I just feel scared and shaky all the time. I was just wondering if any of you had any suggestions as to how to cope better with this. I do have a supportive family- my husband has been great. But I can’t tell my mother or other family members because they are big gossips and just wouldn’t be helpful. I have a couple close friends that I talk to but I don’t want them to be burnt out.
I’m hoping it’s just a large cyst and they take it out and call it a day. If it’s cancer and i need a TAH I just don’t know what I’ll do. I know chemo therapy has helped a lot of people but I just don’t know if I could go through that. I am really just terrified 24 hours a day. It’s all I can think about. Help
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Hi. 13 years ago I found myself in the same position so I understand how you are feeling. Firstly, stay off google. Google cant diagnose you and cant tell you what will happen to you. statistics are out of date and you are not a statistic. I had a radical hysterectomy, was scared witless . Having said that I was home within 4 days. For me I had a cancer diagnosis and yes I had to deal with chemo, something I didnt think I cud do but I did and im still here despite 2 recurrences and in my 14th year. Until you have to do something you wont realise how strong you are. For me the op wasnt anywhere as bad as I thought (trust me, Im a wimp), chemo, whilst not pleasant is doable. Having said all that hopefully your cyst maybe just that, a cyst. Sending you strength and a big Hug, Kathy xx
Thank you so much for the kind words. I know there are no answers right now I’m just having a little trouble staying in the present moment. I just want to feel better and have this nightmare behind me. So glad to hear you’re doing well after 14 years. That’s all any of us can hope for. Sending you lots of love 💕
Hi there, the thought of major surgery and possibly cancer is terrifying. I underwent a total abdominal hysterectomy, bilateral salpingo-oopherectomy and omentectomy after a 7cm complex cyst was found - confirmed as early stage cancer afterwards. I was terrified also, however, I was so glad I had the surgery afterwards and really relieved that the cancer had all been removed. I did have chemo afterwards as additional insurance- the thought of that was terrifying also, but I got through it - as Kath says, it’s not pleasant but it’s doable. It sounds like you have a great medical team - just allow them to guide you one step at a time. Try not to think too far ahead and keep putting one foot in front of the other. Please let us know how you are. Take care, love from Mel 💕 xx
Hi Mel Thank you for taking the time to offer support. I am in a similar situation where they could take out the cyst and not know until days later whether it has cancer or not. So my decision is to either take everything out anyway or only take the cyst out and wait for the total pathology with possibly having to go back in for another surgery.
I just don’t know which one to do. I would like to keep my parts if I’m able to but I’m scared of signing up for a second surgery. Do you have any suggestions? Thank you so so much
Hi there, I totally understand your quandary - I was exactly the same. I was 47 when I found out about the “cyst” and had the major surgery - I really didn’t want the surgery either, however, it was what my surgeon, a consultant gynaecological oncologist, recommended. And she said that if it wasn’t cancer after all I would simply go on hrt. She said that if it was cancer having the major surgery would give me the best outcome. She also said that it wasn’t ideal to have to go back in a second time. I was very worried about surgical menopause, however, this has not been a problem at all - I actually feel better than I did prior to surgery - so I wonder if I was in fact feeling below par without actually realising it prior to surgery. The doctors didn’t seem to think it was such a big deal having everything out as I was only a few years off the menopause - although I had trouble seeing it like that myself at the time! I am very glad that I opted for the major surgery and, had it not been cancer, I would have gone on hrt. It’s a big decision, but if it were me I’d have everything out - you’ll be so relieved once you’re on the other side. Hope this helps - please keep us updated 💕. Love from Mel xx.
Thank you so much for your reply. My surgery date is January 28. Things just got real! I think I might be relieved just to have everything over. I’m still debating as to whether to take everything out or not. But I will talk to my doctor at the pre-operative appointment. I also have a large fibroid as well so taking everything out would also mean taking that out as well which probably would be good. I’ve been bleeding for four months and they don’t know why.
It’s just so much to process and I feel so nervous all the time but I feel a little bit better knowing there’s an end date. Did you have to do anything after your chemotherapy? Just keep checking on it? Are you cancer free? Just wondering how everything worked out. I really appreciate your time and kindness. Big hugs💞💞
You’re very welcome. No further treatment after the standard 6 cycles of carboplatin and paclitaxel. I am on check ups with the hospital for 5 years - I am just over 2.5 years post surgery and I believe they have just moved me to 6 monthly appointments - I always have a CA-125 blood test prior to appointments. No scans unless I have any symptoms. I am cancer free (touch wood). The surgery alone often cures the cancer I had, however, as it was an aggressive type chemo was offered/recommended just in case. So everything has worked out really well - I feel really good and really well (again, touch wood). My consultant recommended that I don’t have hrt, so I don’t. I try to keep healthy and fit, with that in mind, I always eat well, but have got a bit lazy on the exercise front recently. I did get my vitamin D level tested a couple of years ago, prior to chemo I think, and it was very low. So the gp prescribed me a loading dose of vitamin D3 and since then I take recommended 10mcg per day. Good luck with your chat with the doctor - I hope they are able to put your mind at rest a bit more. Prior to my surgery I went to see my gp as I was so uncertain about it and that really helped me - it was like a second opinion. Again, good luck - and do let us know how you get on 💕. Love from Mel xx
Hi, I am 52 and had a 23 cm ovarian cyst removed about 5 weeks ago. Unfortunately the cyst showed I had a Stage 1A mucinous adenocarcinoma of the ovary. I have now been recommended to have a full hysterectomy to ensure that no cancer spreads. Obviously all this was a total shock but you just have to take every stage as it comes and not google too much or over think it as it will make everything so much harder to deal with. Good luck with everything xxx
Hi there I’m so sorry to hear about your diagnosis. How are you doing after surgery? I am in the same situation with having to decide how much to take out without the full pathology report. Even writing that sounds scary!! I’m talking with my surgeon to see what the best route is but I know they don’t have a crystal ball either. Sending you lots of prayers for total healing 🙏🙏🙏
Hi, it is not great for the first week after surgery. I had to keep a catheter in for about 10 days which was horrible but slowly got better and now feel absolutely fine. It really helped walking a bit more every day and now feel I am back to previous fitness levels. I am hoping the next surgery is ok and I won't need chemo. Sending you too positive thoughts for your surgery.
Absolutely sending you positive prayers. When are you able to have your second surgery? I didn’t know how long the healing time is before going back in. I will keep you in my prayers and hope that no further treatment is needed. Sending you lots of love 💕
Hi I am 49. I had a 17cm cyst removed with left ovary last May and was in hospital for 3 days, and found out it was stage 1a Clear cell. I then had further surgery TAH, omentum and lymph nodes removed in October and had day surgery. Did not need chemo as had not spread further. Thinking of you.
Thank you so much for responding. That’s what I’m worried about. Do I have the whole TAH now or just have the cyst removed? I have a bunch of “if this, than that” set up with my surgeon but it’s so unnerving not knowing what’s going to happen. I wouldn’t want to have a second surgery but if it turns out not to be cancer I’d like to keep my parts. That’s what makes this so difficult. I just wish this could all be over and we could all be well. Sending you lots of love
I was told nearly 13 years ago I had a tumour on one of my ovaries that they thought was cancer, & I would be advised to have major surgery & chemo. I felt very weepy, & at first was convinced that there was no way I would have the courage to go through with it. I think I'm the world's biggest wimp. By the time I got a date for surgery, I was still scared, but having thought about it, I thought I must grit my teeth & face it. If I didn't, I supposed the tumour would keep growing, if I had the op, then I could hope the problem would be sorted. By the time I had the op, I was feeling more relaxed about my decision. Coping with the surgery wasn't as bad as I thought, & I soon started to feel better. Although I have had more problems with cancer since, I have no regrets about having treatment. It can be a big decision, & scary, but you can deal with it, it's surprising what you can deal with when you need to. I'll be thinking of you. Di
Hi DiThank you so much for writing. It is a completely terrifying time and I half the time think I’m in the twilight zone. Plus my cyst is getting bigger and the pressure in my abdomen is bad. I just feel so scared. I don’t know if I should have everything taken out or just the cyst. Obviously if they test it and it’s cancer they will take everything out. It’s just scary going to sleep and then waking up and not knowing what the diagnosis is or what parts you have left. Luckily my family has been great but I’m having a really hard time. I appreciate all your support and kindness. Please keep me in your prayers as I will keep you in mine 🙏
Hi, totally understand how you feel! I am 60 and was totally terrified and shell shocked when I was diagnosed with 2 large masses in my abdomen last October 2020, thought to be 2 large ovarian cysts. Before the OP I was told I'd have to have a total abdominal hysterectomy, omentum and possibly some lymph nodes removed as well. When they actually got in there and discovered I had one large 22 cm tumour attached to my small intestine instead, the surgeon made the decision to carry out a total abdominal hysterectomy as well, so I wouldn't have any future problems if the tumour proved to be malignant, which it did. I ended up having to have a bowel resection too. Initially, I was a quite miffed about the additional TAH surgery but have now come to terms with why it was done to try and avoid any further problems down the line. For me the actual surgery itself was a lot easier than I had ever anticipated and the incision itself healed very well. I was given painkillers and had an epidural which they set up whilst I was asleep. I experienced more discomfort from my bowel not working which is quite common after this kind of procedure. The thing to keep in mind is, the surgeons have done hundreds of these operations before and just to put your trust in them. I did Google things alot too before my surgery and scared myself to death. Everyone's experience is different and in my case it took a bit longer to recuperate because of my particular situation. It's great if you have people to support you through this journey. Take comfort that the experts are there to guide you EVERY step of the way. Even after discharge from hospital I was able to call the ward for advice 24 hours a day if I had any worries.
Thank you so much for your supportive reply. I hope I’m able to get that kind of support from my medical team. While I trust my surgeon as she is highly rated at one of the top hospitals she and the staff are impossible to get a hold of. Like literally impossible. I don’t even know if I’ll be able to talk to her before the surgery. Which is in two weeks. I’m just praying that everything goes well and I do have a lot of friends that are praying for me as well as my family is supportive. I just don’t know how I will cope if the prognosis is bad. I’m trying to have faith but it’s really really difficult. Keep me in your prayers if you can.💞
Hi. I can’t add too much except to say focus on one step at a time—try to quell the what ifs until you know the facts. It’s hard but it’s like developing a muscle in your mind. If it were me I’d get the bigger operation to avoid a second one. You won’t feel worse and as your doctor said if it’s not cancer you can go on hrt. I would focus on how much better you’ll feel to get those growths out of your body. Hugs and positive vibes.
Thank you love! You are so kind. I’m going to talk to my surgeon again if she ever returns my phone call to see what my options are. I’m worried about bladder prolapse if I have everything taken out as that seems to be pretty common. I don’t want to get on the surgical merry go round and never get off. Thank you for your time and please keep me in your prayers. Big hugs
Mitten, where I live the protocol is for one surgery from the outset in order to prevent any delays and the effects of having to undergo another surgery. However even if it hadn’t been the norm And I’d had to chose I’d have not hesitated to go with the bigger surgery from the outset.
Hi there. Thank you so much for your reply. I’m debating what surgery to get. The doctor has left it up to me but I feel like she should weigh in more with what I should do. I’m trying to get a hold of her to see if I can get more feedback. It’s been a difficult process just getting in touch with her. As every day gets closer to surgery I am freaking out more and more. Keep me in your prayers if you can. Thank you so much 🙏
MittenKitten, I felt exactly the same as you and look at me now, out on the other side and doing okay! After being unwell for so many months before the op, I no longer have to put up with the awful abdominal pain and other symptoms that went along with it. The sooner you have the operation done the sooner you will be on the road to recovery. Often the surgeons have to make decisions during surgery depending on what they find which was the case with me. I really didn't want to have a TAH either but gave my consent anyway (thinking it was a bit drastic in order to remove ovarian cysts!) As I've said, my problem turned out to be a large nasty gastrointestinal tumour and not ovarian cysts at all. My TAH was done as an insurance so I wouldn't have any further problems with nasty tumour cells floating around in those parts of my abdomen. After the operation they found the tumour was cancerous. They did a thorough clean out anyway at the time of the operation. I imagined my uterus and ovaries to be really large organs but the surgeon described the ovaries as being the size of almonds and the uterus the size of his two thumbs put together. For some reason it made me feel better that they hadn't removed a huge part of me. Try not to go down that road (I did the same) that they are going to carve you up. The surgeons are very skilled and will take the upmost care of you. I had a very neat incision which healed really well and cosmetically continues to improve every day. I had a pet scan done 2 weeks after my surgery to check for cancer cells. Although the scan was all clear they decided to put me on an oral drug called Imatinib (for 3 years) which is a targeted drug therapy to inhibit the growth of any gist cells hanging around. I hate the idea of that too, having to take drugs and reading all the side effects. So scared stiff in fact, I sat and looked at the unopened drug box for another 2 weeks before deciding to take it! I'm on my 12th day of it and so far feel okay apart from a bit of a sore mouth and a bit puffy under the eyes of a morning which I'm hoping will improve. My bloods will have to be checked regularly etc, but I'm slowly accepting the situation. As far as losing my lady bits goes, I physically don't feel any different and don't have any discomfort there at all. It has been 11 weeks since I had the op done. I never thought I'd come through it all, but I'm here! Do keep trying to call your surgeon, consultant or their secretary so that you can discuss your op. Also, keep in mind that things are often not as scary as we imagine them to be. Don't think too far ahead of yourself, be in the present here and now. ("Googling" is a great way of working yourself up into a frenzy, I should know!) When I was being put to sleep for my op I took about 4 breaths of the mask and I was gone!
KH I just like to say to you and all the lovely ladies on here that you are a godsend. Even though we are all strangers you can’t imagine the amount of comfort you have given me and this most scary time of my entire life.
I want to thank you for your honesty, your optimism, your hope and just talking me off the ledge in general. I have been trying so so hard to wrap my head around this. Trying to figure out what I did wrong for this to happen. I imagine a lot of people go through that but I really tried to live a clean life -I’m vegan all organic etc. etc. But somehow here I am. Maybe I should’ve eaten crap my whole life right? And smoked a bunch of cigarettes LOL.
In any event -tears here- I just wanted to thank you for all of your kind words, your help and your feedback. It really helps me to see things from the other side. And gives me hope. I just don’t want to die. I want to be here for my kids. Thank you thank you thank you from the bottom of my heart. Big hugs 💞🙌🙏
You are very welcome. Let us all know how you get on. Same here..... I don't drink or smoke, never have; practically vegan and totally celibate! I said this to my surgeon and he said well don't start drinking, smoking and ..........**** now! Nothing you did wrong so don't blame yourself, it's the way our complex bodies are. Between now and the operation, stay off Google, eat well (really keep your protein levels up) sleep well, and go out for a few regular walks if you can. Buy yourself a snug soft dressing gown and a nice smelling body wash ( Aveeno Baby smells lush!) if you don't have those already. It really helps the senses when recovering in hospital and you are allowed to have your first wash. X
Thank you so much. I’m supposed to have my preop consultation soon and I’m not sure what they let you bring. I don’t want to bring anything that’s going to get ruined or stolen but I would like some comfort items. Especially since my husband or nobody can visit me in the hospital. I might even bring a stuffed animal. Might sound silly but I am terrified and scared. Thank you so so much for your support and love. I will keep you posted xxoo 💞🙏
Hi. Sorry to hear you are going through this . I had a 14cm dermoid cyst removed in September along with both ovaries and Fallopian tubes . It was done Via laparotomy . The histology came back that there was a rare type of ovarian cancer squamous cell carcinoma but because it was enclosed in the cyst I didn’t need any further treatment . J will be monitored and scanned for the next 5 years . From a surgery point of view I recovered very well and you will be given plenty of pain relief. Surgical menopause was the biggest problem for me .
Thank you so much. I am hoping for the best outcome obviously. I’m just shocked my cyst grew over 3 1/2 cm in two months. I’m wondering how much is going to grow in the next two weeks. I’m getting more and more uncomfortable and had a lot of pain last night. Not sure if it was gas or what but clearly I am running out of room in there. 😢
Keep me in your prayers if you can. Sending you lots of love for continued healing 💞💞💞
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Do keep trying to call your surgeon, consultant or their secretary so that you can discuss your op. Also, keep in mind that things are often not as scary as we imagine them to be. Don't think too far ahead of yourself, be in the present here and now. ("Googling" is a great way of working yourself up into a frenzy, I should know!) When I was being put to sleep for my op I took about 4 breaths of the mask and I was gone! 
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