35 yr old with spread to omentum-scared

Hi there I noticed a large lump in my abdomen a while back and eventually went to the dr, she thought it was fibroids and sent me for an ultrasound where they said 'its bowel' anyway I was referred to the colorectal dept and they sent me for a ct scan. While I was waiting for the ct scan I had a bad pain in a different area and went to the emergency dept at the hospital. I told them about my investigations and they conversed with the team that referred me for the ct. An A&E dr came in the room said 'Its bad news its cancer' left the room and then I had a biopsy and went home that night.

Since then I have had a consultant appt they have told me that I have ovarian C with spread to the omentum. Im due to start 3 cycles of taxol/carboplatin on the 2nd Dec then I will have a ct scan to assess, they will then either do surgery or 3 more lots of chemo. My CA125 is at 91 and she said that she'd have expected to see it in the thousands.

The mass I have got is very large now, Im only 8 stone so I can really notice it however the biopsy revealed it was low grade, however I havent been told the grade of my cancer, I guess its grade 3 because of the nature of the spread?

I havent spoken to anyone else in a similar position but the fact its spread scares me and I just want to get this chemo started to kick this thing.

24 Replies

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  • Dear Sunny,

    Some medics need shooting! I had a similar experience when I was diagnosed in 2009. The difference is that I was fast tracked and saw the gynae specialists quite quickly. At 69 it was less traumatic for me. You will probably have the debulking op and then more chemo. Your cancer is obviously not a high secreter so your CA 125 is not as high as it could be but my oncologist told me it is not a definitive diagnostic tool in itself.

    It is a devastating thing to be told! I'm a control freak by nature so I have coped by taking charge. When my hair started to come out I shaved my head. They gave me a wig but I never wore it! I wore crocheted juliet caps and elaborately tied scarve, drew my eyebrows in with eyebrow pencil and fought back.

    I don't know if it will work for you but my attitude is "time is limited so I intend to enjoy it", I try to be positive and go to the theatre, cinema, concerts, out for meals - even though for a long time all I could manage was a starter. I found out all I could about the disease, and fought back with a healthy diet. I am lucky the pain has not been too bad and I am still here after 2 1/2 years. I have another tumour which is coming out a week on Monday. I shall Probably end up with a colostomy, on the positive side It should solve the problem of the uncontrollable flatulence and the bouts of constipation. Whenever I feel low I think how much worse it would be to have been told I had Parkinsons, MND, MS or Alzheimers. The worst thing was the effect of the chemo on my senses of taste and smell. The taste has come back but the sense of smell is very acute so I cannot bear scents. Saves a fortune in expensive perfume. I am very irreverent and make tasteless jokes about the cancer. It is my way of coping. Find yours and forget other people's sensibilities, you are the one with the disease but you are still you, you have not become cancer!

    I went to a "look good, feel better" day at my local hospital and learned some make up tips, not that I wear it much as it has always irritated my skin. It is easiest to cope with devils in your life if you face them, look them in the eye and refuse to let the bastards grind you down. Ask the medics questions and researc their answers. This is a fantastic site you will get incredible support here. Fresh pineapple and ginger help with the taste buds and the nausea, if you like cheese small cubes of cheese to nibble will keep your calorie intake up and ginger cordial will help you to keep up your fluid intake. I crochet and do tapestry and cross stitch so I keep busy when I am sitting around, I am a lousy knitter but if you knit that might work. I can't concentrate on holding and reading books these days so I have audiobooks on my ipod and I listen to the radio. I can't manage the vacuum so I use my attendance allowance to pay someone to clean for me.she is a friend and takes my ironing to do as well.

    The best advice I can give is take control of as much as you can, it won't make the cancer go away but it might help you to face it and deal with all the s**t you have to put up with. With any luck, once you have had the debulking op, you will get a nice long period symptom free. You do not say whether you have finished having a family, you really need to talk that over with your specialists before the op.

    Sorry I can ramble for England!

  • Sunny, what a shock for you, like you I found a lump but no pain gp said she thought it was a hernia sent me for ct scan, then told you have a massive tumor on your ovary,have had two ops and chemo, the chemo wasnt as bad as I thought and had minimum side effects the side effects I and did have I told the nurses who changed my medication and I was fine, so whatever you do dont suffer in silence. You will get a contact number for the oncology nurse who will answer all your questions. Your CA125 is quiet low and its low grade so it all sounds positive, so try to think positive, this site has really helped me with the support and the odd questions answered, hope it helps you as much, as you dont feel so isolated, so good luck, and keep us informed. Love Sue x

  • Dear Sunny

    I was so sorry to hear about your experiences in hospital. You have had an awful time and your case was handled incredibly badly so you have that to deal with on top of news that has been devastating.

    I'm sending a big hug. You will feel shocked at first. I too had an initial diagnosis of fibroids and it seemed every time I went to the hospital the news just got worse and worse. That was last March. Since then I've had an operation which included 'debunking' which is the official name for taking away the omentum. From that moment I started to feel better, calmer and more in control. I've just finished 6 cycles of Carbo-Platin. I didn't have Taxol. Apparently Carbo-Platic does 90% of the work and for me it had an immediate and dramatic effect and luckily no nasty side-effects. I was lucky and continued to do all the things I enjoy.

    You have so much to think about. You will find many friends on this site and they will provide a great deal of support as they have been on the same journey and many are an inspiration.

    with love xx Annie

  • Dear Sunny

    This is a horrible time for you but the Carbo/taxol will do its stuff. I had 6 cycles then surgery then a further 3 cycles - that was 4 years ago. Apparently size doesn't matter so don't be alarmed by that. 2nd Dec will come round quickly.

    If you have been told that you will lose your hair - go to a nice salon and choose a wig. Apparently I looked better in it than I normally do. I hardly had any other side effects so life won't stop - you'll just do different things. I'm sure you've got some good girlfriends - it may be difficult to talk about it to start with and you'll find that after a while you wont want wall to wall sympathy but just normality.

    Blog/Question us here as much as you like. We are here for each other. Whatever you are worried about or feeling - we know!!

    Lots of love

    Sarah

  • Dear Sunny,

    A very similar thing happened to me too - I was also told that my cancer had spread to the whole of the abdoman. I was also told I would start with 3 sessions of chemo, followed by surgary, then 3 more sessions of chemo with CT scans in between.

    However, they also decided to do a laporoscopy and take some samples. I went for this procedure 2 days after my diagnosis.

    When I came round from the anysthetic I was informed I had had complete hysterectomy + appendix out, part removal of my bowel, and full removal of the omentrum. I had cancer cells in the fluid too. It seemed like a huge emergency but in actual fact it wasn`t anything like as near bad as they thought.

    .

    The good news was, the CANCER had actually only spread to a small part of the bowel, the rest was contained, apart from cells found in the wash.

    The omentrum was removed and tested but no cancer was found there, even though it had showed up on the CT scan.

    Pray hard darling, prayers can be answered.

    6 weeks after surgary I had 6 sessions of chemo and one year on - I`m doing ok, I THINK!

    I also shaved my own hair off - before I started the chemo, my only regret was I didn`t do it before surgary because it would have been much easier to look after.

    I decided I wasn`t going to allow the cancer or its treatment take away my dignity. I put myself in charge and "I" decided when the time was right to lose my hair. I actually found it really liberating.

    But not only did I do this, I was sponsored by all my friends, friends of friends, neighbours and family and freinds of family. I raised a whopping £1,475.00 and donated £1,000 to Ovarion cancer research at Addenbrookes hospital and the rest went to the macmillon nurses.

    For the first time of my 52 years I kept a diary and wrote down how I felt emotionally as well as physically. I called this my self councelling sessions.

    I selected carefully who I was able to off load too. But I never once protected my daughters from the reality of things, I kept them well informed all the way through and never once lied to them however, for every negative I found a positive my way of helping them cope, but this also helped me to cope too. Its strange how things turn around when you are trying to comfort someone else, it actually comforts yourself too.

    I decided to be open with the family and friends because I was protected, my own mother died on her 47th birthday from ovarion cancer, my father tried to protect my brother and I by shielding us from the reality of the situation, we belived she would get better, so when she didn`t it was not only a shock we wasn`t prepared for, we went trhough the emotions of guilt and regret because we felt robbed from the chance of being able to talk to our mum openely about alsorts of teenage stuff which would have helped us in our future developement.

    I honestly know it would have helped me personally to know exactly what my dear mum was going through and I think it would have been an enormous help to her too. At least that way, my girls belive me when I tell them I have a good chance of getting better from this. And now we take nothing for granted and love, love and love lots more. Something else people in general often hold back on because "there is always tomorrow", but sometimes that tomorrow never comes unless we take charge NOW!

    I am having a bit of a wobble at the moment - just over a year sinse my diagnosis, but hay its just a tiny blip, I will pull myself through, I know I will.

    One thing my nurse said to me - no point in worrying about it coming back when it may never do. If we do this there is little point in getting better.

    Good luck darling, I hope things turn out to be better than the scan is showing, it can happen, I am living proof of that. Hope this helps.

    love with a hug from Tina x

  • Wow thankyou so much for all your replies each and every one of you, it makes me feel a whole lot better to hear truths from people that have it too, and that have been through the chemo and surgery. What shines through is the fighting spirit in each of you and I take comfort and spirit from that too so thankyou!

    I went and got my hair cut into a bob the day after I was told I will lose my hair quickly, Im going to go shorter in a couple of weeks and then my hairdresser said whenever I want to do it she will shave the lot off.

    I dont have pain but since my diagnosis Im so aware of the big lump, its not that it hurts, its just uncomfortable, and its like it feels bigger sometimes than others.Im constantly symptom spotting now, like I have a little pain in my shoulder so I think is that the cancer spreading.

    I am very frustrated because I just want to get the drugs in me and by the time I go in on the 2nd, that will be 3 weeks since confirmed diagnosis, is this normal for them to be so slow in getting the paperwork sorted? I just feel the longer this goes on, the more this stuff is in me spreading and I just want to get this show on the road.

    I didnt want anymore children I have and 11 yr old boy and a 2.5 yr old girl. My 11 yr old is aware of it and we have spoken to the school and he has a weekly chat with the school counsellor this started this week, I think this will be

    beneficial to him as he is quite a private boy. My husband and I split up a year ago but hes been great and coming to all my appointments and hes going to come and stay at the house next weekend after my first chemo.

    Im very interested in a good diet and juices and alternative things yet Im aware that there are things that can interfere with the chemo. Im currently drinking a glass of wheatgrass a day and started ginger tea as I have read about its cancer fighting properties.

    So my plan at the mo is 3 rounds of chemo then a ct and surgery or 3 more lots then surgery. Wow it seems like such a long slog but I am a very positive person by nature and everyone that knows has said if anyone can kick it then Im the one, God let me prove them all right! Im taking a day at a time right now I think thats the only way really, the thought of surgery freaks me out so I cant think about that at the mo, I have got to concentrate on my first chemo and see how I respond to that. Do you have any tips or advice for me, when I get home will I feel immediately whacked out? Will I want to eat? She said my hair will fall out 3 weeks after the first treatment, will that happen in one day or over the course of a few days? I know my 11 yr old doesnt want to see me with no hair but as its going to be gone for a long time I dont think its going to be avoided. Ive been buying hats and Im going to start wearing them straight away so I get used to it and so do my kids.

    Thankyou again ladies you are an inspiration I wrote on the macmillan website but didnt get any responses yet I wrote my post last night and so many of you have taken precious time to respond and my heart is warmed by that, long may it continue because I KNOW Ill be blogging here as you will all know exactly how Im feeling.

    With Love, K.

  • Hi,again, I always felt fine after chemo I found the steriods made me ravenously hungry, the tiredness came after about 7 to 10 days I think thats when the body is trying to build its immune system up just needed to rest a little, I had some rotten side effects the first two but when I mentioned it to the chemo nurse they changed my sickness med and spead the steriods over more days and hey presto felt fine,I had the hysterctomy with debulking and appendix was in hospital 5 days and a few weeks pottering about indoors it wasnt nearly as bad as I thought, but no lifting. Hope this helps and let us now how you get on. Love Sue x

  • Hi Sunny,

    It sounds as if you are on top of it now... positive thoughts and ideas help. If you want a read, David Servan's Anticancer Diet is a good book to start with, it goes through lots of things, and gives diet tips as well. I have a local Cancer support group I go to regularly, and Ovacome also has local groups if you want 'face to face' help.

    I've lost my hair twice now, it comes out in hand fulls when it falls, so cut short, or shaved before hand makes it ideal. I didn't think about this first time round and I was devasted when it came out to start with. Second time I had it shaved, so much better.

    It is far better not to hide anything from the children, if they don't know, and then pickup on something it could hurt more than the knowing originally.

    As Tina says, sometimes keeping a diary helps, and I do write down the bad days, (tend to forget the good!) Stay positive and take each day as it comes.

    Love n hugs

    Viv

  • Thanks Viv, I think this place will be my diary, I spend more time with my laptop than a pen and paper! Ive been out and bought a few hats today and Im going to start wearing them now so we all get used to it, I guess when reality hits its going to hit damn hard but this is my way of not hiding from the situation. In fact I wish Id had my hair shorter, my hairdresser is on hand for whenever I want to go for the full lot.

    So today is a 'good' day yet tinged with the frustration that theres nothing in me fighting these nasty cells, thats what galls me the most, lets hope this week will be when the process starts. Well it flippin better be!

    K x

  • Sunny, You must tell the nurses whatever you are taking, healthwise or other as I was told not to take ginger while on chemo as they said we are putting poison in your body and they dont want you to put anything that tries to fight it, after I think is fine, stil to check. Good luck. Love Sue x

  • Yes sure Sue, Id never take anything to compromise the chemo not working, dont worry I will tell them everything and ask loads of questions too thanks xx

    Kate x

  • Dear Sunny,

    I was diagnosed with grade 3 ovarian ca a year ago ,I had carbo/taxol 3 treatments either side of surgery . I have 3 sons 7,10 and 13, my youngest son still sucks his thumb and twiddled my hair so loosing my hair was a big worry.I did some research and asked the chemo unit if i could use the cold cap , ( you experience what i called ice cream headache for about 10mins after that it was fine ,i just wore thermal underwear had blankets and hot water bottle and used my MP3 and portable DVD player to distract my mind .I understand this treatment doesn't work for everyone but i am livivng proof it works for some)i endured this for all my chemo's and although my hair thinned i managed to get through the whole treatment with a few strategicly placed grips! I never lost my eyelashes or eyebrows i used another product i reaserched lipocils by Talika it worked for me. I also had hundreds of people praying for me and i know i was given strenghth to get through it.

    Hope this helps.

    Accept all the help offered to you its hard going with young children, i had masses and my children coped really well.

    Take care, you will get through it.

    Carolyn

  • Thankyou Carolyn for your reply. Im having a bit of a down day today a bit of a scared moment, what if I dont respond to the treatment that kind of thing and its all too easy to get a bit panicy. I think its because Im still in limbo waiting for the chemo to start this week because right here right now its not being treated and living like this can get to me at times. Its all well and good being positive, which I am, but I cant wait much longer! the oncologist dismissed cold caps just saying'they dont work'. I didnt take to her that well she hasnt got a very nice bedside manner so Im glad I wont be seeing her until just before my 2nd lot of chemo. Ill ask the nurses about it when I go there this week.

    I woke up from an afternoon nap today just wishing all this would go away, I think those are thre worst times for me, on waking, because sleep is the only release from the 'bad smell' as I call it. Its like a bad smell that just wont go away. I have to believe that it WILL go away though, and thats why Im having treatment. All the while I can feel this thing growing and I know its a large tumour but as people have said before that isnt always an indicator of the severity. However the fact that its spread surely that makes it severe?

    I need to dust myself off today and get my spirit back again because at the mo its a low moment. I want to start the drugs at least then I can feel empowered that something is being done. Only a few more days of waiting left though.

    Kate x

  • Ive got an appointment for tomorrow (tues 29th nov) to go and have my chat with the chemo nurses. Looks like my first treatment will be fri but still havent had this confirmed yet. Ive got a list of questions for the nurses, what else should I ask?

    Kate x

  • Hi Kate,

    I had a lot of negative feedback about the cold cap but i insisted i wanted to try it .It is your right, it is your body. It is important to have a Dr that you feel comfortable with .Are there any other oncologists you can see ? When you start chemo work with it, visualise it destroying the cancer .My disease had spread and i had one surgeon who was very negative about my future before i had even had surgery which was very distressing at the time, and i said i never want to see him again,you have a right to choose your surgeon/oncoclogist. The surgeon i chose was lovely and i totally trusted him. My ca125 is now 7 and my scan is clear and they are hopefull i am cured .Dont look at statistics you are an individual try to see the chemo as a friend it is desrroying the cancer and giving you your life back.I have used relaxation CD from Health creations along with taking supplements advised by Dr Rosie Daniels. I also read the book about Lance Armstrong's battle with cancer i think it is called "About The Bike " It is inspirational. If you can watch DVD'S whilst having chemo it really helped me .I remember those black days but the journey has changed me for the better so it has not all been bad.I will be thinking and praying for you tomorrow and for the start of your chemo.

    Carolyn x

  • Thankyou Carolyn, thats exactly what Im going to be doing, visualising the chemo destroying it. Ill use all my resting time to chill out and do what I can to help my body fight back. Ill ask about cold caps tomorrow and their success.

    K x

  • Hiya

    Had my 'chemo chat' today with a lovely ward sister. Im booked in for Fri 2nd thank goodness it wasnt put off any longer, this waiting has been the worst ever! Shes been through all the side effects and I have decided not to go for cold cap treatment as all in all Id have to wear it for about 7 hours straight with no guarantee that it will work so I think I have been through enough and to have to endure that and for it to then maybe not work wouldnt do me a lot of good I dont think. I mentioned to her that the oncologist was less than warm and she kind of agreed with me (I didnt expect that!) She said that she 'has her way of putting things and she says it as it is'. So I have to go there on friday 9am and get set up for my first day of chemo. Something I never thought Id have to go through but I am and I have to face it, do it and work with it.

    Im going to get a masticating juicer to juice lots of raw food green veg/carrots etc and feed my body with all the freshest food that I can source to try to work with my body and boost the white blood cells when they take a hammering.

    Got 2 days to complete my xmas shopping, I think everyone is going to get vouchers this year as I really cant get my hear around it!

    Oh and she said Ill lose my hair 2 weeks after first chemo! Think Id better get it shaved off I dont know how Ill feel but until I have got a wig in place I feel a bit weird going for the complete chop but Im also wanting to avoid it falling out in clumps too. Scary.

    K x

  • Im feeling good today. Ive started wearing hats out and about and around the house. I have my first chemo tomorrow, and an appointment with the wig lady at the hospital too. Im going to shave my head next week, as soon as I get a wig. Got to be done, I dont want it falling out in clumps.

    Why am I looking forward to starting chemo? Am I a bit weird? All this waiting has drained me and finally Im feeling like I have something to look forward-the start of this road to get me better and kick this thing. Have had so much support from so many people if you could bottle love and support I'd need lots and lots of jars!

    K x

  • All went well with my chemo on friday, was home by 4.30pm. Havent felt bad or tired yet, my appetite has increased and I dont feel anxious like I did before the chemo started, its like now I know something is being done I can kind of feel a bit 'phew' if thats ever allowed when you have cancer?

    Ive had great support from friends and family far and wide and my perspective on life has changed since this diagnosis. Each day is a blessing. Should I be expecting side effects a few days after chemo? They said normally people get them a couple of days after treatment, I have got the odd stab in my hips and my legs feel a bit tired if Im stood for too long but that was kind of what I was like before from just bein 'Mum'

    Kate x

  • Hair started comning out 2 weeks to the day from first chemo so I shaved it yesterday.. Strange experience and I wasnt sad and funnily enough I didnt find it traumatic. Its weird to look in the mirror and see me looking like this but I grabbed the bull by the horns, put on my wig and went for a pub lunch with a dear friend. Phew, its done now. 2nd chemo on Friday-I hope I get through it was well I have the first lot as I have felt very well. Im juicing daily a mixture of greens and veggies and feel good on it.

    K x

  • I`m not sure if this helps other than the mind but it might be worth giving a go. I`m usually what too active for meditation but each and every night I prayed out loud THEN i would concentrate by imagining my cancer cells were little black bugs with big teeth and the white healthy cells were my angels, the angels came and gobbled up the black gremlins every night.

    Hope it helps xxxx

  • Tina, someone said to me imagine the chemo as space invaders zapping the bad cells and thats what i do when Im having a quiet moment!

    Had my consultant appt today my original cA125 was 119 now it's 100 she said not to go by that though, to go by a ct scan that Ill be having in 5 weeks time just after my 3rd chemo. So, second chemo tomorrow. She was amazed that I wasnt ill or had any side effects she said thats probably the shape of things to come so fingers crossed for that.

    Kate x

  • Hi all

    Had my 2nd chemo last friday and had a weird blood pressure drop 15 mins into the taxol., was horrible I went light headed all hot in the face and they came over gave me oxygen and turned off the drip, after that I was ok, they started me off again and I was fine. I think it was because I stupidly didnt eat breakfast. Wont be doing that again! Im more fatigued after the 2nd lot, and have sight numbness in a couple of my fingertips. I shaved my head 3 or so weeks ago but I still have a full head of shaved hair! So far I still have eyebrows and eyeashes and Id love to think that I wont lose them but thats wishful thinking on my part. I have 3rd chemo on 13th Jan and then ct scan on 26th Jan, thats when they will decide whether its more chemo or surgery. I hope its done enough to warrant the surgery after 3 chemos.

    When I write a post in here how come it doesnt bump it to the top? Do I need to start a new subject each time I post? I love to get replies off people as it realy helps me and I feel like my posts dont get seen.

    Love to you all

    K x

  • I have had the debulking surgery and six carboplatin rounds of chemo.mine had spread to the omentom and i was stage 3 cancer. glad to say i have had the all clear.When going back for my three monthly checks they only ask how I feel quickly examine my tummy <tapping it> check for lumps under my arms and thats it no blood tests or scan. Just ring us if feel unwell or worried about anything and off I go wondering if things ok But i do feel great so maybe nothing to worry about? has any one else been treated differently?appreciate any comments. Love to all Jenny xx

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