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LMP complex mucinous cyst partial burst
Hi there I am a very scared 29 year old girl. Recently diagnosed with large complex ovarian cyst 17.6cm. because of my age I was told I was low risk and they didn't rush me in to have it removed. In the mean time part of the cyst burst reducing it to 10cm. The rest was taken laparascopically. They didn't take any samples of the fluid in my abdomen but did drain it out and also lost my blood test for markers!.
Having had histology results back I have now found out it is an LMP borderline mucinuous cyst. They preserved my ovary as I have no children Does this mean I am doomed to have abnormal cells metastasise to other organs in my abdomen? What questions should I be asking now? Would my chances be improved by just getting rid of my ovaries or should I not bother if the chances are that abnormal cells have now spread to other parts of my body?
My doctor has now ordered a CA125 and C19-9 blood test which is for pancreatic/liver cancer???!
Any light anyone can shed would be helpful. They just want to keep me under 6 month obs.
Having had histology results back I have now found out it is an LMP borderline mucinuous cyst. They preserved my ovary as I have no children Does this mean I am doomed to have abnormal cells metastasise to other organs in my abdomen? What questions should I be asking now? Would my chances be improved by just getting rid of my ovaries or should I not bother if the chances are that abnormal cells have now spread to other parts of my body?
My doctor has now ordered a CA125 and C19-9 blood test which is for pancreatic/liver cancer???!
Any light anyone can shed would be helpful. They just want to keep me under 6 month obs.
Hi again
Please don't be angry with yourself. You have learned the most important lesson that HCPs are far from perfect early and that's so important. It took me months to get my head around the fact that while the people tasked with my care do their absolute best they will not be as proactive as you need to be yourself.
Honestly time really does heal alot , but before I could move on alot needed to happen ...I needed to be healed physically, I needed to get all of the information about the condition and what follow up I needed.
I do wish you a long and successful and happy life , you deserve it !
Please don't be angry with yourself. You have learned the most important lesson that HCPs are far from perfect early and that's so important. It took me months to get my head around the fact that while the people tasked with my care do their absolute best they will not be as proactive as you need to be yourself.
Honestly time really does heal alot , but before I could move on alot needed to happen ...I needed to be healed physically, I needed to get all of the information about the condition and what follow up I needed.
I do wish you a long and successful and happy life , you deserve it !
I am so sorry this happened to you. I can understand how you would be in shock with the way it all unfolded. I do hope all works out to continue your schooling plans on schedule.
Don't second guess yourself. You did the best you could!!!! It is hard to be told you need an oncologist. I felt very uneasy as well during my first visits with mine. You are very young and I pray this is the end of cancer for you. You do have excellent odds and I would push to be sure all follow-up is timely so you can stay in good health.
The appendix is sometimes involved for women who get a diagnosis of mucinous borderline tumors. These tumors actually originated in the appendix, but presented as a mucinous ovarian tumor. The side of the cyst does not matter. I think it is unlikely that this is your type of tumor. However, it is worth discussing with your gyn/onc if your mucinous tumor was the intestinal type. Best wishes for great news from here forward!
Don't second guess yourself. You did the best you could!!!! It is hard to be told you need an oncologist. I felt very uneasy as well during my first visits with mine. You are very young and I pray this is the end of cancer for you. You do have excellent odds and I would push to be sure all follow-up is timely so you can stay in good health.
The appendix is sometimes involved for women who get a diagnosis of mucinous borderline tumors. These tumors actually originated in the appendix, but presented as a mucinous ovarian tumor. The side of the cyst does not matter. I think it is unlikely that this is your type of tumor. However, it is worth discussing with your gyn/onc if your mucinous tumor was the intestinal type. Best wishes for great news from here forward!
Thank you so much guys. The way they broke the news to me was a Dr came in (about the 8th one I have seen and said - 'you've been referred to me as I'm the cancer specialist'. When me and my mum picked our jaws up off the floor she said she didn't realise I hadn't been told already! She is the gynaecological oncologist but to be honest after the first few minutes I didn't take a lot in. She says she will be in charge of my case now (they actually don't know who first treated me at the hospital or who did my surgery she asked if I remembered the name!).
I am just so annoyed I wasn't more insistant and demanding. I have never even been in hospital before, I just didn't realise you had to record every single thing and that whoever shouts loudest gets the best treatment. I will be from now on though.
Thanks for all the questions and the second pathology - I'll have to ask about that. I am due to start training as a secondary school teacher next week, I am single and hadn't even thought about kids. I just cannot believe this is happening. So hard to focus on anything once someone drops the C word. The cyst was on my left ovary - is that less likely to have anything to do with my appendix as that is on the right side right?
I am just so annoyed I wasn't more insistant and demanding. I have never even been in hospital before, I just didn't realise you had to record every single thing and that whoever shouts loudest gets the best treatment. I will be from now on though.
Thanks for all the questions and the second pathology - I'll have to ask about that. I am due to start training as a secondary school teacher next week, I am single and hadn't even thought about kids. I just cannot believe this is happening. So hard to focus on anything once someone drops the C word. The cyst was on my left ovary - is that less likely to have anything to do with my appendix as that is on the right side right?
Dear Thosebrighteyes
I am so sorry to hear about your health problem and really really feel for you. It's so scary being diagnosed with something like this but at such a young age it's particularly terrible.
I am much older , 48 and was also told in March 2010 that I had a borderline mucinous tumour after a TAH/BSO in January. There were also many "issues" with my care.I was truly terrified then but feel much calmer now.
I totally agree with Shelly about the prognosis and management.This is the same advice given here in the UK.The survival rate is almost 100% my consultant says.
You need to ask your gyn/onc about the probalbity that some cells have moved around. However my understanding is that even if these tumours do recur they still come back as borderline. It would have been better if the cyst had not burst but it has happened now , so try to just work around this.
I would write down any questions you have e.g. why do you recommend leaving the affected ovary ? What will happen at the follow up ? Would you be happier if you were seen more frequentlly at the beginning ? If so say so. Always ask why a particular decision was reached , what alternatives there are and the pros and cons of each. If your doctor is a female then ask what she would do if it was herself ? Is there a timescale in which you should try to have a baby ? What signs and symptoms should you look out for ? Who do you contact if you have a problem ? What's the best way of getting hold of them ? How do you contact your doctor if you have any other questions after this consultation? If you can bring somebody with you and or write down the answers.
Again whether or not you keep your ovaries is a difficult one. I found a surgical menopause at 48 very tough so at 27 it may be rough, sorry. My consultant is adamant that HRT is the best option for me 'till I'm 50 at least. I have had no problem with the patches and the evidence is that the risk of other problems is minimal 'till 50. Some ladies on this board have used the contraceptive pill to switch off ovarian function temporarily.
The worst thing about this is that so few people have heard about these tumours , some doctors say that they are cancer and some don't.
I'm sure that your doctors wanted the best for you , but you have had less than perfect care i.e. delay and burst cyst. Learn to be proactive about your health , ask ask and ask.
Take care of yourself and keep posting.
I am so sorry to hear about your health problem and really really feel for you. It's so scary being diagnosed with something like this but at such a young age it's particularly terrible.
I am much older , 48 and was also told in March 2010 that I had a borderline mucinous tumour after a TAH/BSO in January. There were also many "issues" with my care.I was truly terrified then but feel much calmer now.
I totally agree with Shelly about the prognosis and management.This is the same advice given here in the UK.The survival rate is almost 100% my consultant says.
You need to ask your gyn/onc about the probalbity that some cells have moved around. However my understanding is that even if these tumours do recur they still come back as borderline. It would have been better if the cyst had not burst but it has happened now , so try to just work around this.
I would write down any questions you have e.g. why do you recommend leaving the affected ovary ? What will happen at the follow up ? Would you be happier if you were seen more frequentlly at the beginning ? If so say so. Always ask why a particular decision was reached , what alternatives there are and the pros and cons of each. If your doctor is a female then ask what she would do if it was herself ? Is there a timescale in which you should try to have a baby ? What signs and symptoms should you look out for ? Who do you contact if you have a problem ? What's the best way of getting hold of them ? How do you contact your doctor if you have any other questions after this consultation? If you can bring somebody with you and or write down the answers.
Again whether or not you keep your ovaries is a difficult one. I found a surgical menopause at 48 very tough so at 27 it may be rough, sorry. My consultant is adamant that HRT is the best option for me 'till I'm 50 at least. I have had no problem with the patches and the evidence is that the risk of other problems is minimal 'till 50. Some ladies on this board have used the contraceptive pill to switch off ovarian function temporarily.
The worst thing about this is that so few people have heard about these tumours , some doctors say that they are cancer and some don't.
I'm sure that your doctors wanted the best for you , but you have had less than perfect care i.e. delay and burst cyst. Learn to be proactive about your health , ask ask and ask.
Take care of yourself and keep posting.
Hi there,
In general, borderline tumors have an excellent prognosis. You will want to make sure you got the correct pathology. Have you seen a gynecologic oncologist? If not, you need to be referred to one so he/she can assist you on your follow-up. Usually, in cases such as yours, it is recommended that you get a second opinion on pathology from a large university hospital or cancer center. It is common for large ovarian tumors to have benign, borderline and frankly malignant sections in the same tumor. So, since it did rupture and you didn't get complete staging, you will want to make sure it was all borderline. A gynecologic oncologist can work with you to determine if you need a surgery for further staging or to check out your appendix. Some mucinous tumors are related to a tumor in the appendix. Usually, if you didn't get staging and it is a borderline, you will just be monitored to watch for recurrence, rather than having to undergo another surgery.
Most literature I have read says that it is considered safe to spare fertility for most borderline tumors. It recommends having a complete hysterectomy after you have completed your family. This is something you can discuss in detail with your gyn/onc.
I think the odds of things working out well are in your favor. There are many on this board who have had a borderline diagnosis. Hopefully, they will come along and share their experiences with you. There is one type of borderline that acts more aggressively than others. But, most of the time, surgery is the cure. It will be really important that you follow-up with a gyn/onc. I hope all works out well. Hang in there!
Shelly
In general, borderline tumors have an excellent prognosis. You will want to make sure you got the correct pathology. Have you seen a gynecologic oncologist? If not, you need to be referred to one so he/she can assist you on your follow-up. Usually, in cases such as yours, it is recommended that you get a second opinion on pathology from a large university hospital or cancer center. It is common for large ovarian tumors to have benign, borderline and frankly malignant sections in the same tumor. So, since it did rupture and you didn't get complete staging, you will want to make sure it was all borderline. A gynecologic oncologist can work with you to determine if you need a surgery for further staging or to check out your appendix. Some mucinous tumors are related to a tumor in the appendix. Usually, if you didn't get staging and it is a borderline, you will just be monitored to watch for recurrence, rather than having to undergo another surgery.
Most literature I have read says that it is considered safe to spare fertility for most borderline tumors. It recommends having a complete hysterectomy after you have completed your family. This is something you can discuss in detail with your gyn/onc.
I think the odds of things working out well are in your favor. There are many on this board who have had a borderline diagnosis. Hopefully, they will come along and share their experiences with you. There is one type of borderline that acts more aggressively than others. But, most of the time, surgery is the cure. It will be really important that you follow-up with a gyn/onc. I hope all works out well. Hang in there!
Shelly
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