Hi, I'm very interested to talk to anyone who has had a chyle leak post OC surgery. I currently have one and I'm following a mega low fat, high protein diet in the hope that it will heal. So far I've not met anyone else with this condition following OC surgery and I've struggled to get information regarding the issue.
Best, Lisa x
P.S. Can't wait to eat a cake!
So sorry you have this problem, Lisa. I've never heard of it before so can't help but would just like to send my sympathy. Hope you get some helpful answers soon - and you can soon eat those gorgeous cakes.
Love, Solange xx
Hi Lisa
I Had never heard it before either so with my usual medical curiosity I was naughty and googled it ! I just got an overview of it so just go let you know that there are a few sites that give simple explanations. You may already know this anyway so forgive me for repeating it. Chyle is a natural milk like substance that contains lymph and fat and it and the lymphatic system help nourish the body and the lymphatic system helps fight infection. Due to surgery occasionally there can be leaks in the system. This is where your strict low fat diet comes in. You may have to use supplements to help you keep your weight up. Eating less fat reduces the Chyle so leak reduces or stops . It may only be for 3 or 4 weeks but of course your Dr will tell you. If it doesn't work I believe there are other options which I didn't look up.
Anyway Lisa. Put away those delicious cakes for the moment. It's a small price to pay to solve the problem . We could all do with less fat I'm sure. I am sure there are forums on this particular condition so might be a good idea to discuss with people with the same condition. The main thing is to strictly follow your doctors orders . Fingers crossed it will be sorted quickly for you and maybe you will be allowed to celebrate with a luscious cake !
XXX
Hi, thanks for the reply. I've been on a 10g a day low fat diet for 6 weeks now. My consultant had not had this happen before and therefore it took quite a while to get sorted with the correct diet. The majority of information I gleaned for myself from the Internet as you have just done although information can vary from 0 fat to 20g depending on site/hospital. I ended up getting info from a dietician at St Mary's Hospital Imperial College London by phoning myself, I live in the North East. I now have a dietician helping me at the freeman but it's the first case she has had too so a bit of suck it and see.
Because I have had such a difficult time getting the right info (no forums) I thought it was worth posting, someone may be going through the same thing with little or no support.
It's a mega restrictive diet which can lead to malnutrition (you need fat to absorb some vitamins) if not managed correctly but obviously well worth the result if it heals the leak so the cakes are away for now but the list of 'can't wait until I can eat this food is growing by the day'.
Best, Lisa
I'm glad you are on top of the situation Lisa. As you know this is an OC site and it also helps us PPC women. I am sure I came across one for your condition last night when I was searching . Possibly an American site. It really is annoying for you so here's hoping that sacrificing those cakes does the job ! I hope your dietician has substituted the lucious cakes with some tasty alternatives . I hope you dont have to wait too long until the,leak stops and you can get back to normal. Have a nice weekend
XXX
Hi, sorry am I missing something or maybe I have not communicated well. My chyle leak is a side effect of surgery for ovarian cancer so I think I have the right site?
Trying to manage this on top of surgery, diagnosis of 3c OC and chemo is a challenge and although unlikely it would be great to talk to someone in the same position.
If I'm missing something here please let me know?
So sorry Lisa
I was the one who didn't read your post properly. I thought it must have some connection but then the websites just vaguely connected them. You must have thought , what is she talking about ! Put it down to my last Mon chemo brain please ! I will read my posts more carefully in future. Now I had better lie town to renew a few brain cells ! Good night
XXX
I know exactly what that feels like, 
no problem, it's a lonely journey sometimes even when you are surrounded by people who love you. People on here seem lovely and I'm hoping to make some good friends, you can be no one. X
HI Lisa,
I too believe I have a chyle leak....although never been formally diagnosed. My neck swells on the left side about every 20 days. If I eat fat than it is super painful in my stomach and back. If I keep my fat to a minimum the swelling seems to go away faster. I am scheduled to have some invasive radiology to see what is really going on. I have been living this way for nearly 2 years since I had a cyst removed from my neck. It is very frustrating. It drains all my energy when I swell up. What were your symptoms and are you better? I feel I am hungry all the time and I am losing weight which I really did not need to do! UGH!!!! Very weird condition that many people/even Dr.s do not know about ! Please let me know what worked for you. I have also been told my swelling is lymphodema....so for that I do not eat any processed foods. I used to LOVE salad I am beginning to HATE them.
thanks for your reply.
Kc
I was warned that as a conceqeunce of having lymph nodes removed a leak could occur. I asked if they would drain it off the answer was no. So I asked what would happen and they said the would explain skin care and massage... Hope you leak stops and you can have cake x
Hello,
I’m absolutely fine now. Once mended it has never recurred which was my worry at first. I did a 10g fat a Day diet (with supplements) was drained once then just as I was about to be drained for the second time It must have sealed and I re-absorbed the fluid. It took about six weeks in all.
How are you doing, has it closed? It’s an awful thing, really sorry this has happened to you.
Lisa x
Please I have one right now with 2 drains after surgery. How did you heal it and keep nutrients up? Did you feel weak?
Hi, I had one as you will read above. I spoke to a London hospital dietician as they were experts. They told me to go on an under 10g a day fat diet which I did. I used myfitness pal to measure the fat.
After approximately 4-6 weeks it healed although I introduced more fat gradually after 6 weeks. I could tell it had healed as the fluid was building up again and just before they were going to drain me it started to go down.
It was very hard but the pain was so unbelievable I found it easy.
MCTs refers to medium-chain triglycerides These were a powder given to me by the dietician at the hospital chemo was being delivered from. It was a powder you could add to food for example mashed potato, these days don’t use the lymph system. Coconut oil is half and half so I wouldn’t use that even.
You are entitled to see a dietician when having chemo under the NHS.
Chyle leaks are very rare, I was the first my surgeon had seen in a 20+ year career so they were clueless. It’s more common with liver cancer apparently, which is why St Mary’s in London knew fat more. I just looked up the dietician there on line and she sent me their diet plan. I’ll see if I can find it for you. X
Thank you! I'm on the mct so that's good news. Did you feel terribly weak from it? I'm trying to distinguish if that's the cause or my meds
I certainly didn’t recover from surgery in the way others with debunking did. The fluid build up has such an impact. How long have you been on the low fat diet?
Had surgery 12 days ago, the leak showed up in my post OP drain 2 days after surgery. Did ct scan and found the source of the leak, so put another drain in. Been on low fat diet for about 10 days, high protein. Mct oil for 3 days. Terribly weak especially when I get hungry. But I'm on gabapentin too so not sure if that's the cause of the weakness, or a combination. They will schlerose it Thursday I think if it's not gone down by then.
Well it certainly sounds like they know more than mine did although they did not try to identify where the leak was coming from. It’s good that they are trying to sort it out so quickly. I know I felt awful and also in pain when I ate fat although before we knew what it was I just thought it was eating.
I would speak to them if you think it’s making you so weak. Maybe through your CSN if you have one.
I hope you feel better soon. X
What supplements did you take, other than mct oil?
I took a multi vit I think but not much. X
Thank you for your info
An inspirational talk
Covid protection during chemotherapy
how long before surgery?
So grateful for all of you
Chemotherapy before surgery.
