A kind lady on the Mamillan site has sent m over here, said you are all very friendly 
I had a swelling in my abdomen, found it in May, didn't go away so I went to my gp a few weeks later. She fast tracked me immediately and took blood there and then. In 24 hours I had an ultrasound, it was a huge cyst 20x18cm. The CA125 came back at 13. I then within a week saw a consultant, she said the cyst may be suspicious so within three weeks I had a ct and an mri. Before I got those results I got a phone call from the hospital to say I had a date for surgery, and could I go for my pre op assessment in 2 days time! It was then I started to panic. Went for the assessment to be told I was having a full hysterectomy, they thought I knew. Four days later I went to see another consultant who said the ct and mri showed no secondaries but had picked up a growth which looked malignant, behind the large cyst. He performed a full hysterectomy inc my appendix two weeks later. I eventually got the histology, apart from the 4cm malignant tumour attached to the left ovary everything else the removed, tested was benign, inc the fluid from the large cyst that ruptured as he opened me up. I have been advised to have 6 cycles of chemo to mop up, was told there is very little evidence that giving carboplatin and taxol will increase my chances of it not recurring as against having the carbo alone. So that is what I am doing, starting next Tues. Its all as you know been very scary but I feel so lucky it was found. My husband is currently in his 6th year of remission from stage 4 bowel cancer, he has been my rock these last few awful weeks. My children have cope well, I have 18 year old triplets.........2 sons and a daughter........one is in the Army and one has just gone off to Uni........so life is not so full on in that direction! Thank you for reading and good luck to you all. xx
Diagnosed with stage 1c 6 weeks ago.: A kind lady... - My Ovacome
Diagnosed with stage 1c 6 weeks ago.
Hi triplets. Welcome to the forum . If you have any questions ask away. The good thing (if there is one lol) is that the grade is low. I hope your chemo goes well and Im glad to see you have support. Take care. Kathy xx
Hi -this seems to be thr trend now as I have met 2 ladies in the last month having single chemo only.
Take care- good to know that your husband has done well xxx
For most 1C single carboplatin is the usual prescription (as per NICE guidelines)- there will be some situations when combination with Taxol is preferred though Sx
Hi triplets!!! It's me! Glad you came here, lots of lovely ladies, lots of good info etc here too.
Take care
Clare x
Hi Triplets, welcome to the site. My Mum had a very large, malignant ovarian tumour removed 20 years ago and had single agent carboplatin treatment after. She's still here with no recurrence :). Good luck with the chemo.
Sandra xx
Hi Triplets. A lot of readers will wish they had a CA125 of a lovely low 13 ! Good luck. Pauline
Thank you everyone, feel as though I have friends now, its only those who have been through this truly understand. Re the CA125 was told that its not a reliable test as proven in my case as did have ovarian cancer. What do you all think?
Hi triplets, I was diagnosed with stage 3a in Jan 09, and although I've had 2 relapses, am fine at the mo...my ca125 at time of diagnosis was 64, and has never really shifted from 7/8 since... even when I had relapses.. so for me it's not reliable. My onc said it's a bit pointless doing it for me but it's in the guidelines so they still do.
Hope you get it sorted ok😊
Sue
X
Hi triplets. The CA125 isn't entirely reliable but it's the best we have, apart from scans of course. I think you get an idea of what to expect from your own CA125 - we're all a little different. For myself (in 2nd remission & doing well, staged 3C), it becomes unreliable when it's rising, so I know when to get worried & what is my usual acceptable range. Best wishes Pauline
Hello Triplets,
I too was diagnosed with OC Stage 1C after removal of a 16cm "Cyst". My CA125 was always in normal range too it was 26 when I was diagnosed. So I agree with you it is not always reliable however for some women on this site it is a very useful indicator. In my opinion and from what my Onc said he believes that as mine was contained the protein had not had a chance to register to levels that indicated a problem. It is quiet possible that if I was diagnosed at a later stage it would have been a different reading and that makes a lot of sense to me.
My cells were high grade and I had chemo as a result. I was given the combined treatment and other than losing my hair I was lucky enough as I didn't suffer too badly with side effects. I am out the other side now and feeling very well. I hope you get through your treatment quickly and without too many side effects! Drink loads of water when you are having Chemo it really helps!
Best of luck with the rest of your treatment!
Dx
Just to encourage you I had stage 1 ovarian cancer 20 years and following surgery and single agent Carboplatin have been fine since. Wishing you all the very best
Hi Triplets
I had stage 1c,but had both carbo/taxol,but I think that was because I had ascites which had to be drained.
You are very welcome here and yes, we are a friendly bunch always here to support each other.
So, anything you want to ask(although it sounds to me you are coping splendidly) feel free there is always someone to help
Lots of love,
Carole xxx
A big welcome from me - thank goodness it was all caught early. Best of luck for your upcoming treatment - you've come to the right place for advice and support. Jemima xx
Hi what a shock for you. Great you have a supportive husband. I wish you all the best over the next weeks and months. Try and do lovely things in between treatment.
Dee
Hi these posts are all so encouraging, when you first hear those words you just feel like you have been given a death sentence don't you? You all sound so positive, it helps when you are a "newbie". Is it wise to venture far from home when you are on chemo? Its just that my daughter went off to Uni in Sept and I wasn't able to go, would love to go and see her if only for a night, it would only be a 4 hour train journey. No plans to do very much else!
Hi again
I did go about a bit the worst is you have to come home which I did a couple of times, I found that if I felt OK I did things there was no pattern particularly. I was unfortunate that I ended up in hospital e few times but hey it was all inclusive full board .... Seriously though you will still have some funny moments in amidst all the scary bits. Keep your sense of humour
Dee
Hi there
I'm on Carbo only for remission . Had my third session a week ago and I try to be extra careful day 10 to 14 after chemo as that is when your immune system is at its lowest . I avoid being in crowds on those days and always use anti bacterial gel. I dry my hands with paper towels and I'm generally extra careful . However immediately after my first two treatments I got a bus to the City for a few days . My energy was good due to the steroids I was given for the first 2 days. Plus meeting friends to go to Bridget Jones baby and some retail therapy was like a tonic. I hope I have convinced you to treat yourself to that lovely trip to see your daughter. By the way my trip was a 4 hour bus journey ! Best wishes
XXX
Hello Triplet!
I was on the double agent Chemo so can only speak from my own experience but I generally wasn't too bad the couple of days after Chemo (you get steroids and they give you false energy) once you come off the steroids the following days can be tough. I found that I wasn't too bad then week 2 and better in week 3 (I had infusion every 3 weeks). I worked week 2 and 3 generally taking the first week off at each cycle so I was able to work/drive and do most things, the fatigue can be very debilitating sometimes though! . Everyone is different and I am sure some of the ladies on here that have experience with single agent Carbo will be able to advise but I think you will probably be able to visit your daughter at some stage during the process?
Best of luck with the treatment!
Dx
Wishing you all the very best and welcome to the forum. I have found it so helpful and supportive. Xx
HI Triplets, welcome to the site. I am glad your surgery went well and now you are starting chemo. One thing I would say is dont be slow in asking your team for help with side effects, we all tend to think we cant ask for help when we can, If you need help in managing side effects some of us will give you tips from our experiences. There is also an Ovecome nurse on site that can answer medical questions. I wish you well with the treatment and do come back on again at any time
Hi triplets welcome I've have just finished my chemotherapy 7 weeks ago just carbo me too went through what you had done was lucky my doctor picked up on it my ca125 was 203 and had a tumor on my right ovary had a full hysterectomy and my omentum removed in March was stage 2 was in the best place had my operation done at The Christie and my chemotherapy treatment too - I've just gone back to work getting better each day. I will be going on a program soon in November at beechwood cancer center for one day a week for eight weeks is to help me to move on after cancer. I will be under Christie for ten years to be checked. My last CT Scan was clear I will be going back in December for the next blood check. This site is great support and lovely ladies is helped me so much.
Take care
Tess66
Xxx
That is such good news Tess, so pleased for you, hoping it will be the same for me. The thing that I don't understand is both my surgeon and oncologist say there is no point in doing scans after as a follow up, nor bloods. I will go to a well being appointment and just report anything I am worried about. I spoke to my gp about I and she said she would arrange a scan so not to worry. Its just that everyone on here seems to have scans to keep an eye on things. x
Triplet I don't have scans either or bloods but my marker isn't reliable for me! I do have 3 monthly review meetings and I report any symptoms at them! My onc explained that as I was Stage 1 and everything was removed with negative tests there is no need for scans! He's not keen on subjecting me to the radiation of the CT! I am happy enough with that and I have a great GP so I know if I feel I need a scan he will refer me for one!
Dx
Thank you Hogswart, that is very reassuring, so do you have to see our oncologist every three months?
Yep! Heading to my 6 month review tomorrow! I alternate between the surgeon and the medical oncologist! Surgeon tomorrow and medical oncologist in Jan! Both very nice! Once you have had OC they seem to keep a very close eye on you! I am told I will have 3 monthly apts for 2 years and then it goes to 6 months for 3! I am happy enough with that! As I said I have a great GP so I can talk to him in between those apts if I need to!
Dx
I will not have anymore CT scan due to radiation just my blood been taken. Me to I've got a good doctor she put me on the program to. I did find the chemotherapy hard the last two effected me bad. Like the lovely ladies said drink lots of water 💦 hope you will be ok we are here for you.
Tess66
Xx
In a perverse way , you are lucky that health system acted quickly and you are being treated quickly. I went to my doctor last November and was told it was probably ibs and wasted time seeing a colorectal consultant. I was thankful the consultant referred me for a pelvic scan and then, slowly, things started to happen. I will be starting chemo in a few weeks, no date set yet. Wishing you well with your treatment.....I'll just be a couple of weeks behind you. Keep positive. Sx
Thank you....need to channel my anger and frustration into positive thoughts for this fight. Keep in touch about your treatment , we can compare notes! This site is great and I've had lots of useful tips about preparing and coping with chemo. Wishing you well. Sx
Hi everyone.......well I slept surprisingly well last night and woke up feeling quite calm, no churning stomach and sweaty palms as I have had for every appointment the last 4 months. Arrived at the unit at 12.30pm and taken straight in to my chair, a very nice recliner, hot wraps put round my arms and fluffy pillows! Free lunch, no pain and the kindest and most attentive nurses, male and female. In and out in 90mins, it was made to feel so easy. I feel fine atm, so hoping I will wake up and feel the same. So one down and five to go. The nurse who mainly looked after me read my notes and said "oh you are in just for a bit of mop up, you will be fine"........that really made my day! xx
Hi Triplets.....So sorry for your diagnosis, but glad you've found this site. You will find it very comforting and informative. I wish you the very best for a smooth course of chemo and a positive outcome. JudyV
Hi Triplets! I was also diagnosed 1c after op 4 years ago. I had single carboplatin too and have been NED (no evidence of disease) since.... My tumour type was a mucinous one and they often don't cause raised ca125.
So glad you were taken such good care of at the unit and do hope that you are finding chemo side-effects manageable...? The first time can be a bit of a challenge but there are lots of tips on the forum and plenty of us here if you need us...
Very best wishes, Sxxx
Thank you Sunfleury and Judyved washed my hair today and noticed there was more than normal in the drain thought on carbo only that wouldn't happen? Good job I have thick hair! Apart from that feel fine in fact a big appetite today, is that the steroids? Also got a follow up letter from the consultant today and it said for the first time on it stage 1c2 serous carcinoma............just off to google it as all I knew it was stage 1c2. He said that normally with stage 1c2 he would recommend the dual agent chemo but was happy for me to go single as the malignant tumour came out in tact and had not ruptured, the large benign cyst that was part of the same mass had ruptured minutes before surgery. So hope I am doing the right thing with just the carboplatin! xx
Sunfleury is a mucinous one mean the same as serous? x
Hi Triplets-glad you're feeling ok & sending all hopes this continues!!
Yes the steroids can increase appetite, I became a bit of a carb fiend until they wore off!! Mucinous and serous are two different subtypes... You've got the stage and subtype.
Don't forget to keep drinking plenty of fluids and move about as much as you're able- I think little and often is often the best way! Very best wishes xxxx
Evening ladies..........just in a mini panic as 15 days after my first chemo with carboplatin I have noticed I am losing body hair and a little more than usual hair loss when I wash my hair, is this normal? Don't mind on my legs!! Apart from that no side effects so far, feeling quite good in fact. Next chemo is on the 1st. Hope you are all doing well and feeling well. xx
It wouldn't generally be expected. There are other reasons for hair loss and it might be worth getting these checked when you have your next blood test: low magnesium levels or underactive thyroid. I write from recent experience as I was losing a lot of hair and it did turn out to be down to low magnesium not any chemo or anything. Probably not wise to start supplementing without their sayso while on chemo. Good luck!
Hi ladies, jus thought I would update you all. Had chemo number 4 last week, so just two to go in Jan. Have coped pretty well, noticed though after treatment 2 how very tired I felt. Seems to be my pattern now, ok the day after then tiredness like I have never felt before and awful night sweats with a sweet sickly smell.........horrible! So saw the oncologist today, my second meeting with him and he said everything was going to plan, that I looked very well. I asked him about the horrid sweating and smell and he said it is the chemo that causes it. I asked what will happen after I finish the treatment and he said they will do a ct and he will give me the results in Feb then his colleague who was my surgeon will see me 6 months later. I said I had originally been told it would be a three monthly review but he said no it will be six monthly, with no blood tests or further scans. My CA is currently 10 but then it was 13 when I was diagnosed so clearly not a reliable indicator for me. I asked him where if it does come back its likely to appear and he said abdominal cavity/liver/lungs and that usually with a recurrance I would feel symptoms................all scares me! Does this all sound about right? I was diagnosed stage 1c. Do hope you are all keeping well, feeling positive and not too exhausted getting ready for Christmas, by Weds I will have all my triplets home...........can`t wait! A very happy Christmas..........love and health to you all. xx
This is all sounds pretty good news. I wonder if 6 monthly reviews are being proposed because it's grade 2?
I've always been on 3 monthly reviews (1c3).
I've had two recurrences, neither of which would have been picked up as early if I'd waited for symptoms. Mind you, my CA 125 to date does seem to be a reliable indicator of things being on them move again. But I have also wondered whether we rushed into treatment perhaps a bit quicker than absolutely necessary. You can't win!
Enjoy your last day of calm today!
Hi Mac thank you for your reply. I am stage 1c2. How long have you had OC? Sorry to hear its been back twice, you say it was picked up bef you developed any symptoms was that just through the CA blood test? Mine was normal in the first place so that's why he is saying no point in doing them. I have talked to my own gp and said how much it worries me that they don't want to scan after the initial baseline one once the chemo finishes and she has said she can always arrange one. Don`t want to feel I am doing it "behind their backs" but if it hadn't been for the scans in my case it wouldn't have been picked up! So did you go back onto chemo each time? I do hope all is well with you now and it stays away, I think when its stage 1 people seem to think there is more chance its not going to come back, my family and friends just keep saying "oh you are just having mop up". All I know is I shall be vigilant forever more! Good luck and Merry Christmas to you. x
Ovarian cancer
why do i need mri?
New to this and panic has set in
Stage 1c high grade ??
Help recentley diagnosed with a large cyst...really worried!
