Well I appear to have danced in Hell over the last few weeks, so thought I would share my story on here to hopefully gain some support from other sisters!I had major surgery 3 months ago to remove my gallbladder that I had an infection in that turned into gangarene so I'm lucky to be alive! My surgeon sent me for a CT scan 2 weeks ago because I am still in a lot of pain and fatigued all the time!the scan detected a 4 half cm cyst like lump on my right ovary, he reassured me not to worry as most of these things are Benign, and if it was anything nasty they have caught it early! He completed a urgent referel to Gyne and I had a transvaginal ultrasound the following week and then referred to the rapid access clinic. Myself and family have been worried sick I hardly slept and jus couldn't function! I had my appointment on Friday, my blood tests came back not showing cancer and the Dr, who was lovely with a very calming and pleasent demeanour, advised I was very low risk 1%, of it being cancer and that I had two options, monitor it that included regular scans and blood tests or have surgery to remove it and the right ovary, I opted for surgery as we have a strong history of breast cancer, so I shall be having it after Xmas. Huge relief for us all although I am still worried as he said he can't confirm its not cancer! Would jus like to hear other people's experiences and if it is Cancer, would leaving it for a further 3 months be ok? Also I forgot to ask in that time would it be monitored, just Incase it has changed etc?
Thankyou everyone xxx
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Kekelou40
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It all sounds very promising from your perspective and everyone is saying the right things these things are nearly always benign and I am sure yours is too!
My cyst was much bigger than yours it was 16cm so it was going to come out in any case. I am very reluctant to say this to you as I am sure yours is nothing to worry about but I feel I must tell you that my bloods were always normal. The marker used to test for OC (CA125) was always within normal range for me so it's not always a good indicator! I feel really bad saying this to you but I am very passionate about people getting diagnosed early and feel you should know that the bloods don't always tell the full story! My cyst was removed and found to have cancer cells.
I would encourage you to talk to your doc again. I got mine removed laparoscopically and recovered very well and very quickly from surgery.
Again I really am sorry if this adds to your stress levels which I know can be very high at times like this! Please forgive me.
Dx
PS I should also have said well done on getting through what was obviously a very tough time with the Gallbladder!
Hi there thanks for your reply, they also tested my blood for Lactate dehydrogenase, Beta-hCG level and Alpha-feta protein, I only know this because I looked on the request letter I took to phlebotomy! I will speak to my Dr again and I am scheduled for a MRI scan this month due to my gallbladder pain so hopefully that will pick up any changes!i am still worried though but I am dealing with so much ilness and pain at the moment that I've got to try and believe that I can't be in the 1 %!
I'm so pleased to hear you have recovered are you undergoing Chemo now xxxx
I am 6 months out from the end of Chemo and doing really well! Have my 6 month review on Tuesday! I was very lucky diagnosed at stage 1 and all tests after the second surgery were negative! That's why I am so passionate about getting diagnosed very early! It sounds like you have a great team of professionals around you so I am sure you are in safe hands! I hope you get better very soon as it sounds like your poor body has had a rough time of it!!!
Well done you you strong brave lady!! I sincerely hope that you stay well and positive I'll upload a picture of myself as it's nice to put a face to the name lol xxx
Hello Keke - welcome to the forum, although I'm sorry you find yourself here.
Our lovely D has already relayed some sound advice to you which I can only reiterate. Of course, none of this is meant to add to your current stress levels, but similar to D, I went to my GP after a month or 2 of abdominal pains (and looking back now, quite obvious abdominal distention i kept ignoring) and was decided to have a scan privately (as it was a 6 week wait on the NHS)...they found a 15cm 'cyst' in my right ovary. I had the CA-125 which came back normal and was told i was 'low risk' and so was put on the NHS wait list for surgery (6 month wait!). I wasn't happy with this (mainly because i was starting to look pregnant and am only 33) and so was fortunate enough to be able to go private and had it remove laprascopically about 3 weeks after my scan. It turned out to be a 'borderline muscinous tumour' (a borderline form of ovarian cancer), so i was promptly referred to a gynae oncologist and within a month was having a second op to have my right ovary, fallopian tube and appendix removed along with various biopsies (again, laprascopically, although the incision to remove ovary ended up being around 12cm as it had developed a rather large haematoma inside it from first op).
Anyway - it was diagnosed as stage 1 and all other biopsies came back negative, which I was OVERWHELMED with relief about. But I was more pleased that I just got it dealt with quickly, otherwise I feel, for me, it could have had a very different outcome.
Everyone is different and none of what i've just said is meant to add to your stress or scare you, but as D says, if you're not feeling comfortable about anything, please go back to your doctor. It sounds like you've got a great team of people you can refer to and it's always best to check, if anything to settle your own mind.
I wish you all the best because by the sounds of things, you've already been through the mill.
Thankyou for taking the time to reply to me, firstly I am appalled that your GP didn't use the NICE guildlines and refer you to the rapid access team, this is for suspected ovarian cancer and you would have been seen in 2 wks!
I am in a quandary what to do as it wasn't my GP who referred me it was my surgeon, but I am sure I could speak to one of the specialist nurses!mine is very small at the moment and I suppose the questions I want answered are probably un answerable, such as if left for another 3 months can it get bigger etc??? i do get a pain in both my groins but funnily enough since my gallbladder surgery my pain in my left leg and hip and lower back is excruciating at times wakes me up at night etc, that is the opposite side to my cyst and gallbladder pain, so some days and nights are bloody awful!! I was putting my left pain down to the fact I'm not as active, prior to surgery I weight trained 3-4 times a week and did a lot of walking, plus my stomach muscles have been cut and they support your back!
Goodness there are so many things feel like I'm swimming in sea of s@@@e!! Plus I go the toilet for a widdle every half hour, but obviously the CT scan etc hasn't picked up anything wrong with my bladder and I have diabetes so I put it down to that X
I was pretty upset with my GP too, and i have to say, even my first Gynae apologised (the one i took myself to privately)...it was him who then put me on the fast track but only after the histology came back on the 'tumour' he removed. Before that, all signs were pointing towards it just being a jolly big ovarian cyst! Thank goodness I had the resources and desire to be dealt with quickly (and therefore privately initially....my second op was done NHS) and also that he had the nowse to remove it safely, otherwise i'd have been looking at chemo for sure.
Before and after my first op I had a tremendous amount of pain on the left hand side (when everything was on the right) and both my first gynae and my gynae onc both suggested it could be 'transferred pain' from the right-hand side. There are lots of nerves in and around our pelvic area, which can cross over (like in the brain)...so something pushing on/affecting the right can cross over and cause pain on the left and vice versa.
I'm sure that, seeing as your 'mass' is small and your medical team seem to be taking all the precautions, you'll be fine to wait until after xmas. But of course, there's always a chance they might be wrong (again, not trying to frighten you here) or that it 'might' grow. Have they suggested additional scans before your intended surgery? I have NO idea how long my little evil friend was in there growing away for and of course, by the time it was spotted it was quite big. I'm now petrified that another mutant is silently growing away on my remaining ovary and remaining symptomless until it gets bigger! That's something I struggle with daily and will only be quashed if and when i decide to have regular scans (which I do) as i'm not keen on the thought of losing my remaining ovary at the age i am (33) unless i have to, when i've had no children as yet.
Like you I was massively active prior to my first op - weight and HIIT training 3-4 times a week. When you have surgery on your tummy, especially if you've got quite tight muscles, there's bound to be additional pain whilst everything gets used to being snipped and torn and consequently trying to knit back together.
I was urinating quite frequently before my initial diagnosis, but looking back, that isn't surprising because the tumour was so big and consequently pressing against my bladder. So perhaps you are right to associate that with your diabetes.
My last op was Aug 9th and i'm doing really well. I've recently come home from a 3 week trip to South Africa (which i booked last year before any of this nonsense occurred) and am now in Spain (part work, part pleasure). I'm swimming 2km a day, which i'm using as a launch pad to get back into my training when i get home, because i miss it so much. My periods are all over the place but that is to be expected and unless i have any 'unusual symptoms' beforehand, i see my oncologist for a 6 month check up in March 2017.
All i can advise, is if you are worried about anything, chat to your team, be it your surgeon (maybe via his/her secretary) or one of the surgical nurses. There really is no such thing as a silly question.
Glad to hear your getting more active I can't wait to start pumping iron again lol my mind works overtime at the moment still getting over the mental trauma of my last ordeal and now this plus I'm too poorly to work at the min, dye to ongoing pain and fatigue, sometimes spending days on the couch!!!my previous lifestyle, just this May, consisted of a very demanding job and being a single mum to my beautiful little boy, working out regularly, I was like a Wonder Woman and lost 8 stone in a year through sheer determination and all naturally, so you can imagine the affect all this is having on me both mentally and physically! I am going to see my GP this week and ask I will ask about the scans as I will feel more reassured, as this is is question I forgot to ask!
You keep being positive and active the stronger your body will get the more focused you will be!!! XXXX
HI Kekelou, and welcome to the forum, you are in the right place. I think you were wise to opt for surgery again, You have been through quite a lot so perhaps this is why they are leaving it go until after xmas. However your bloods are clear and that is a good sign, in the meantime if the mri picks up anything nasty I would hope your surgery would be brought forward but your doctor seems unconcerned. So enjoy Halloween and then Xmas and try and put all this out of your mind and concentrate on getting your strenght back post surgery
Thankyou for taking time to reply to my post!yes my MRI is for further investigations into my gallbladder pain and will give me a good body scan as I'm convinced something is wrong with my back and bladder! As for Halloween I love it and get dressed up with my little boy cook lots of food and have the family round so fingers crossed it should be a good day lol xxx
Remove it!!!! Do not wait and watch for it to turn into cancer, because that is possible! After I had breast cancer in 2006 I got genetic testing. I was told at that time that I had a very minute chance of getting ovarian cancer. So, small that it seemed like a bad idea to get a prophylactic hysterectomy. Here I am in 2016 fighting stage 3C ovarian cancer! Treatment has sucked up nearly a year of my life. It's been a nightmare. I am grateful to currently be "in remission" but that is no guarantee of anything. So, don't hesitate to get this cyst removed. Do not leave it for 3 more months.
Oh Tesla I'm so sorry to hear what you have been through and hope and pray that your Remission continues!!!it is very small at the moment 4 cm, and I am very anxious as to how much it can grow!unfortunatley I can not afford private healthcare so I will speak to the Gyne team and my GP again, as I am so concerned especially having gangarene in my body a few months ago, that absolutely terrified me, never thought that would happen!!hope you continue to be strong and well xx
Hello. Sorry you've had to join us but glad that you've found us reasonably early. 3 months seems like a long wait. Even if it is not long in terms of cancer growth it's a long wait for you and yours psychologically. Is there anything you or your GP can do to get the op sooner? In the meantime you could do everything you can to get fit and well so your body recovers quickly, with physical activity and a healthy diet which will also help you immune system fight cancer cells.
To answer your question I didn't opt for surgery yet mine is 5.2x5.8x7.4cm last mri october my doctor supported me in watch and wait no one else did - my recent mri showed it marginally increased from March. I would rather it hadn't but at least not rapid! Seeing another consultant tomorrow as don't feel my questions were answered so hoping for some answers to questions that have not been answered by other consultants, otherwise still in limbo. Don't trust what I have met so far. All tumour markers normal so far but I have been told don't rely on this. Was long suffering endometriosis and had a particularly stressful 3 years where I reckon everything went wrong... Anyone know where you can get genetic testing done? No one supported me monitoring it but it may not be the case in UK.
everyone is brilliant on here. It has been a huge support to me. I live in hope of getting someone soon who I trust and who doesn't say they are overwhelmed by my questions. Should a surgeon really be a surgeon if he is overwhelmed by my questions! That's a red flag for me.
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