new girl

Hi i was diagnosed on xmas eve with stage 3c ovarian cancer after an MRI scan confirmed the stage. On 12th December an ultrasound scan had shown a large mass on my left ovary and i had 7 litres of ascites drained 2 days later so i knew what i was dealing with at this point and it was just a case of waiting for the official staging. During the awful ' lets get treatment started NOW' phase i have been very positive and had some fantastic support from my wonderful family and friends but as well as them this website has provided me with a massive sense of belief that i can beat this. I have been following all your wonderful blogs since my cousin pointed me in the direction of the website and this has taught me to ignore the stats and focus on all the posiives! I would love to hear about anyone else diagnosed at this stage who have had chemo first before surgery and also if the chemo helped to suppress ascites too. Thankyou!

p.s sorry i forgot to say i am starting chemo tomorrow!! Chemo brain and i havent even started yet!

69 Replies

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  • Hi! welcome to our club that no one wants to join, I am sorry that you have had reason to do so, but you will get a lot of support on here, there are a lot of people that have had chemo first, but I am not one of them, I wish you all the best for your future surgery and send you my best wishes love x G x

  • Thanks for your support Gwyn.x

  • Dear MummyBear

    Welcome - though we'd rather you didn't have the qualifications to join this site! You have absolutely the right attitude to get on with things and this will stand you in good stead. What a dreadful time of all time to have the diagnosis of an incurable cancer. The good news is that it can be managed and some are lucky enough to be in a constant remission for many many years.

    I was diagnosed with Stage 3C Ovarian Cancer in about April 2011 - I can't recall exactly when as I can't recall the date of surgery or anything else. It didn't seem worth committing to memory at the time. I do have an aggressive type of cancer - it's serrous so not the worst - but all the same the cells aren't well differentiated so it's not the best cancer news.

    Having said that - I had surgery followed by 6 cycles of Carbo-platin only and the tumours left disappeared leaving small scars on my lymph nodes and deep in the abdomen. I haven't had a sick day in nearly 2 years. I lost a lot of weight at first which made me feel very young and pleased with myself. It's crept back on now but I'm happy with that too.

    I just wanted to send a message straight away to say it's not all bad news. I've had the best 2 years of my life and have many more exciting things planned for the years to come.

    Best of luck with your chemotherapy. They do it to shrink the tumours in some cases which makes surgery a bit more efficient. They took mine out straight away as I was rolling round in agony. I didn't ask any details but concentrated on getting better.

    Please post to let us know how you are.

    Loads of love xxxx Annie

  • Thankyou Annie i have read a lot of your inspiring posts on here its great to hear about people who are living their lives to the full despite diagnosis. I have no idea whether my cancer cells are well differentiated or not but maybe thats something they can only tell through surgery? I have been told that at stage 3 more people are people treated with chemo first as standard which is good because some of the older information implies it is only for non operable cancer! x

  • ah ha - the moral of that tale is not to consult Dr Google! So much of the information on the internet is out-of-date. In fact advances in surgery is the major factor in improving survival rates.

    When all the offending bits are removed they'll be taken off for analysis by the histology department and that will reveal exactly what the cells are. Funnily enough the cells were originally thought to be undifferentiated which is bad news but over the months they were promoted to serrous but poorly differentiated. This isn't as good as well-differentiated which replicate normal Ovarian Cells but at the end of the day all this is a bit of nonsense as we're all individuals and cancer will affect us all differently.

    I really do hope you will continue on this vein. There are many wonderful ladies on this site who are here to help you through the process.

    Love Annie xxx

  • Thanks again Annie. I actually had a biopsy just after xmas at the same time as inserting the 2nd drain tube and they were waiting for results of that before starting chemo to make sure it was definitely primarily ovarian not peretonium. Because of xmas they said i might have to wait till next week but thankfully they got it sorted so i could start this week but the only info i got was that it was what they thought and therefore we could go ahead with the appropriate chemo drugs.They may have info on what type if cell from that but i havent had an official appoiontment to ask. Good luck with your continued good health!!

    Love MB x

  • Hi Mummy Bear

    Sorry you had such unwelcome news on Christmas Eve.

    Yes, I had stage 3c OC and had 3 cycles of chemo before surgery, followed by three more afterwards and by the time of the operation came round the bloating from the ascites had completely disappeared and so had most of the tumours.

    You are so right to ignore the statistics. Do keep us up to date with what is happening and how you're feeling (good, bad or indifferent).

    Lots of love

    Mary xxx

  • Thankyou Citrine that's great news about the ascites and the tumours. I hope you are keeping well.

    MB x

  • Hi Mummybear,

    I had 3 cycles of carbo/taxol before surgery and 3 post surgery. The reason behind this is that chemo is supposed to shrink the tumours making surgery easier.

    I had 13 litres drained before chemo started and another 5 after 1st chemo on June 8th last year. So far there has been no recurrence of ascites. I was told it would come back till I started chemo.

    I was diagnosed stage 1V. All disease below my navel has gone but there were 2 tumours left, one on bowel and the other on diaphragm that the last 3 chemo did not make any impression on them. Having said that I feel perfectly fine, a bit breathless on times but otherwise ok.

    Good luck with your chemo tomorrow, it's always a worry but it really isn't as bad as we think.

    You will get good support on here, everyone has been where you are now and still around to tell the tale. Stay positive, look forward to hearing how you fair

    love Chris xx

  • Hi Chris,

    Its reassuring to hear your ascites hasnt come back as for me that is the worst bit at the moment and apart from that i feel well. I am glad to hear your treatment went well and you are feeling good. Do you have a plan on what to do next as far as your remaining tumours are concerned? A differerent chemo regime? Thanks for your closing statement too that's exactly the stuff i need to focus on!

    MB x

  • Hi MB,

    I won't have anymore treatment at present as I'm asymptomatic, will only have more treatment if symptoms return. The feeling is that you don't benefit from treatment if there are no symptoms so quality is the keyword.

    I've been told there are other chemo regimes out there for later use. The longer the gap between chemo the better.

    So long as I take my Laxido I'm fine, you will probably have read that constipation is the bane of our lives. I asked my husband the other week when my conversation became sh..e? I got the feeling he always felt it was (only joking)

    The fluid was awful, I could hardly waddle, my daughter was getting married 10wks after I was diagnosed and the outfit I bought wouldn't fit. It was a relief when they said chemo before surgery as my 1st thought was 'thank goodness I won't have to squeeze a new scar into my magic knickers'.

    Chris x

  • Hi Chris,

    Its good to hear that you are doing well but that there are more options out there if you need them. Hee hee your comment about Laxido made me chuckle iv'e got that to look forward to then!! I hope the chemo works for me with the ascites it only takes a week to build up again and is SO uncomfortable as you well know. Im wearing smocky stuff all the time!

    MB x

  • Hi Gwyn, Whippet and Citrine. Thankyou for your welcome and support. I replied to each of your comments but then lost them so rather than write them all out again decided to add a comment at the bottom! Im sure i'll get the hang of it in time. Its great to hear people enjoying life to the full despite diagnosis it certainly opens your eyes to what is important!! And fingers crossed my ascites as well as the tumours will be zapped by the chemo. I have heard that chemo first is now used more often as standard which is reassuring as on some of the old info available it indicates that surgery is not an option!

    Thanks again, love MB x

  • Sorry. Just seen my replies have come back again after disappearing - i dont know what happened there!!!

    MB x

  • Hello there Mummybear ,

    So pleased you have found us although as Gwyn says its a club where no ones really wants to Join but having said that you WILL receive wonderful support and advice here .

    Drink plenty of water through out your chemo ....it helps to flush it through ...

    Take good care now xx

    Love Jan x

  • Thanks for the welcome and the advice Jan. I have read so many inspiring messages on here!

    MB x

  • Hi and welcome,

    Your attitude is very positive, and it needs to be, I've read so many inspiring stories on here and the everyone is so kind, I'm sure we will all offer you lots of support when you need it. I found asking lots of questions of the consultant and my specialist nurse was very helpful.

    LA

  • Thanks LA,

    You're right there are LOTS of inspiring stories on here and there's no reason why we can't join the club! An i'm good at asking lots of questions! :)

    MB x

  • Hi MB i was diagnosed Sep 2012 with stage 3, surgery followed but had to be halted as things were more complicated than expected. I have now had 4 of 6 chemo sessions and following a scan after number 6 I am hoping for surgery again. My tumours have shrunk incredibly well and with hindsight I would have been better having some chemo before surgery. My regime is carboplatin/taxol/avestin.

    I have come across several people who have had either 3 or 6 chemos before surgery, and in the unliklely event that you were inoperable I am sure they would have told you at your consultation.

    I had 1 litre of fluid drained at surgery but since starting chemo I have not had any more ascites.

    Please ask any questions on here, you will get loads of support from the lovely ladies on here, they have already helped me enormously.

    Love Brenda XX

  • Thankyou Brenda,

    I am sorry to hear the initial surgery didn't go well but pleased that the chemo has definitely done the job giving a great chance of successful surgery as follow on. Also means any other chemo done after surgery should hopefully be responsive too! I'm optimistic for good results from my chemo.

    MB x

  • Hi mummy bear, you couldn't have joined a better site everyone is lovely and so helpful. I came out of hospital a week ago having had 4 litres of fluid drained and first of 18 weeks of taxol. I think the fluid has returned and do feel very weak but hoping tomorrow 2nd taxol will kick in. We have just got to fight this disease but I feel things are improving all the time. Good luck xxx

  • Hi nikki,

    I agree this site is wonderful! Can i ask is your Taxol pre or post surgery and why 18 weeks?

    Good luck to you too.

    MB x

  • Hi Mummybear

    Just wanted to say, hang on in there. What a b****y awful Christmas present :-( You are so right to focus on the positive and ignore statistics, though. There are as many outcomes as there are women with OC, it seems to me. It is the current best practice to do chemo then surgery then a bit more chemo to mop up any cells that are still lurking. If you want any tips on preparing for surgery or chemo, use the search box T the top right of the page. It's good at picking up on key words.

    Let us know how it's going with you. All the best for the rest of your treatment

    Love Wendy xx

  • Hi Wendydee,

    Hee hee yep not the best xmas pressy ever (i dont know WHAT happened to the classic Fiat 500?!) but at least i was expecting it and it was'nt a complete shock out of the blue! (By the way how do i do smileys?). Thanks for the tip re the search box and for the good wishes.

    MB x

  • Type smileys in the search box! Gwyn did a wonderful tutorial a while back. She is the smiley queen, as well as our poet laureate ;-)

    Good luck :-o

    Love W xx

  • Oops! We duplicated again Annie- weird ;-) xx

  • Annie, I replied to your post and it seems to have knocked it off! Sorry! What's happening?????

  • I'm blaming my MacBook Air for being thoroughly rubbish at smileys. I'll try again - rounded bracket, colon, then hyphen

    here goes

    ):-

  • It's 'cos I deleted the rubbish emoticon. Remind me how to do it!

  • : then - then ) or ; then - then ) For more variations, see Gwyn's tutorial! Love W xx

  • hmmmm it doesn't work on my MacBook Air - you know what they say about bad workmen ..... blame the tools. I'll have another go. The Mac has so many brackets to choose from:

    :-)

  • hooray hooray. Now I'll have to find out how to do the one with sunnies on. xxxx

    :--)

  • Is it 8 then - then ). Will try! 8-)

  • wow - 8-)

  • You two are hilarious! :-D

  • we got diverted .... apologies to MummyBear. xxxx ;-)

  • No worries thanks guys!

    8-)

  • Oh dear another mad one... :-D

  • Hee hee its the only way!!

    ;-)

  • Hi Mummybear

    Echoing Wendy - what dreadful timing that was and it must have been so frustrating knowing Christmas would possibly stop things moving along rapidly. Actually I think you did rather well getting chemo scheduled for tomorrow...! I was also 3c diagnosed in June but ... see my earlier blog... was declared in remission yesterday. I also had a couple of ascites drains but only before chemo kicked in - I got a bit of bloat during but not much and the doc said it would go naturally - she was right it did. I had a couple of phantom bloats too after - turned out to be more my own paranoia than anything else! It's utterly horrible though, we all understand.

    I think your outlook is amazing - and spot on for giving yourself the best chance of getting through this as positively as possible - it IS possible to stay positive (mostly - don't beat yourself up for your odd grumpy/sniffly day). Hang in there, keep posting and we will be with you every step of the way.

    Love

    Sue xxx

  • Thankyou Sue,

    I was rather worried about Christmas holding things up and was initially told chemo wouldnt start till next wk so i was pleased when i got the call from the chemo nurse. Chemo went well yesterday anyway so im just preparing myself for the crash next week!!

    MB x

  • Hi MB

    Its a bloomin awful time for diagnosis, I was eventually diagnosed on 2 Jan after my op, and being in hosp since 27 Dec 2009.everything seems to slow down over that period of time. Good luck with your chemo, and let us know how you get on

    Take care

    Love

    Sue

    X

  • Thankyou Sue,

    Everything went well yesterday so fingers crossed the tumours are being zapped at this moment!!!

    MB x

  • Hi Mummybear, I'm so glad that you are ignoring the stats and are focusing on the positive! I was diagnosed a year before you in December 2011. I had the standard 3 cycles of carbo/taxol which started on January 10th, and surgery in Mid March, and another 3 chemos by June. (Slightly delayed due to low blood counts). I had "a lot" of ascites drained at diagnosis, and it hasn't come back since (touch wood). The chemo did it's job in drying things up.

    You have a great attitude and I'm sure you will be fine! All the best with the chemo tomorrow, after you have the first one done and dusted ....you will be a pro!

    All the best xx

  • Hi Blue,

    So im EXACTLY a year behind you with my chemo starting yesterday 10th Jan 2013!! It gives me a good idea when surgery will follow anyway as i wasnt sure how long after chemo they would operate. Did you have an MRI scan straight after your 3rd chemo? Are you well at the moment? Chemo went well yesterday so im just waiting to see what happens in the next week or so!!

    MB x

  • Hi MB, Hmmmm I replied to you a little earlier, but no sign of it. Maybe a duplicate reply will mysteriously appear later. Just to say, yes I did have a scan (CT not MRI) after my third chemo which showed that things had significantly improved before the Op. What a coincidence we both started our chemo on the same day! Yes, I am well at the moment and have just had my 3 monthly checkup this week and CA-125 levels are within normal range. Has crept up by a few points but my Onc advises that fluctuations by a few points either way are normal.

    Please take things easy and rest if you need to. I felt pretty well during all my chemo sessions, except for the 5th and 6th where I felt more nauseous & tired.

    Take Care xx

  • thankyou blue. I was told they are using MRI over CT scans as there's a really good up to date scanner with an expert in analysing the results. Also it will compare directly with the MRI i had before diagnosis. Great to hear you are well!! And don't worry i;ll take it easy. Sat with my feet up with a mag and feta cheese nuts olives grapes and beetroot salad. Yummy!!

    Thanks for your support

    MB x

  • HI Mummybear,

    I am, as someone on here put it, my dear daughter's sterling supporter. This site is wonderful and the ladies are so supportive, encouraging and inspirational. My dd's OC was treated with surgery and she did not have chemo. She still has tumours, which are benign and treated with anti-hormone injections in a bid to shrink them. She has had two major ops and four key-hole surgeries. To remove the tumours would mean a hysterectomy and a bowel re-section resulting in a permanent colostomy bag. She is only 19 and the drs are not keen to perform such major surgery because she is so young - she was 16 at diagnosis. She has an MRI every 3 months which has helped to pick up on cells which needed a closer look (hence some of the key-hole surgeries) and it is reassuring that she is being watched so carefully. She had an op in November to remove an endometriosis cyst which was causing problems with her bowel and she was in a lot of pain. Thankfully she is out of pain, but the threat of major surgery looms because if another cyst grows they will definitely go ahead and get rid of everything. I find coming on here and voicing my concerns and fears very helpful, as well as trying to give an occasional word of encouragement to others.

    You seem to have the right attitude to your OC and I can see how encouraging the others have been. I hope and pray that all goes well for you and that you are able to keep positive in the days ahead.

    With love and best wishes,

    Honey xxxx

  • Thankyou Honey,

    It is very kind of you to offer support to others when you are going through this. I have 4 grown up children 2 girls 2 boys and i cant think of anything worse than any of them going through something like your dd has. She will come through it with your support though. I would rather have it myself anyday than see one of my children suffer. You are very brave.

    Lots of love.

    MB x

  • Good luck, Mummybear. I am sure all will go well.

    Love,

    Eileen xxx

  • Thankyou Eileen,

    MB x

  • Hi Mummybear,

    I had 4 sessions of chemo before surgery, then 2 after, and I'm glad they did that because I'm sure it helped the surgeon to get rid of all the visible tumours, which he did. I actually enjoyed my chemo, despite the side effects, as I was so relieved to be having treatment! I hope you will sail through it.

    Gxx

    PS They told me the refrigerated hat only slows down the hair loss, doesn't prevent it, and makes no difference to how/when it grows back, so I gave up with it on the second session.

  • Thanks Gina,

    I decided against the cold cap as just like you said it is only likely to slow down the hair loss and if its gonna happen anyway i might as well get used to it! Anyway chemo went well yesterday and like you i was just relieved to get things started! Had they planned to do 4 sessions with you or did they add one more after seeing a scan result? I guess all your chemo went ahead as scheduled and you didnt have any delays due to infection? Hope you are well now and in remission.

    Love MB x

  • Check back when youre in the mood, MB - there are some informative, useful, touching and often funny hairloss and wig stories... For some reason we drift onto this one from all sorts of topics so tags may not be much use unfortunately! If its any use: I'm the out, bald and proud type ;). They put me right off my wig when the hospital called it an "appliance"...

    Love Sue xxx

  • Yes, as you say, they added the 4th session based on the scan result - they wanted everything to shrink a bit more. One session was delayed by a week due to a low white cell count, and I had the dose reduced at the 4th session because of neuropathy in my fingers, but no delays due to infections. My response to chemo was described as a 'good partial response' and the surgeon removed everything visible during the op. Anyway, I think I am now classed as in remission (they didn't officially tell me that, but I asked the registrar if I could say that now, and she said yes!)

    Gx

  • just replied to this but it disappeared so maybe it will pop up again?! Anyway congratulations on you remission after set backs. Long may it last!!! I was a bit worried yesterday when one of the chemo nurses asked if i was just having chemo (as in no surgery) and when i mentioned surgery following chemo she said 'hopefully'? It never occurred to me that i wouldnt be having surgery!!! Im stage 3 not stage 4! One of the round doctors also implied this when i was in for ascites drain. Im sure it doesnt mean anything but its easy to let your mind take over when people say things casually!Anyway its good to know though that if after 3 doses of chemo my tumours havent shrunk enough one more session might just do it!!! Thanks for the info and encouragement.

    MB x

  • Hi MB! glad you're underway with getting better. If you type 'wigs' or Hairloss' into the search box when on the blogs page, you will find some info from old posts. It will all be worth it in the end, I am sure.

    It probably doesn't mean anything with the quotes about 'if' they operate. It probably just means they haven't read your treatment plan. I was amazed at how many times we had to tell different members of the staff all the same things, over and over agin..... when my Mum was in hospital last year. It was a case of 'here we go again' There are so many members of staff around and then there are the changing shifts and rotas, the different teams and types of nurse, doctor etc. if the medical team said they were doing chemo then surgery then chemo again, it links with current practice at the hospital I was treated at and many more I have heard about. You haven't set a location so I am not sure where you are being treated. If you wanted to name your hospital then someone may have similar experiences there.

    Anyway, all the chemo will be zapping those b****y cells as I write, long may they be zapped! ;-)

    Love Wendy xx

  • Thankyou so much Wendy,

    You are spot on with the fact we see so many different people that its not surprising they are not all aware of the treatment plan. When the oncologist first spoke to me he said 6 cycles split 3 before and 3 after so they must have always planned to operate part way through but thanks for reassuring me and making me realise that he was more qualified to know my plan than the odd 'round' doctor and chemo nurse!!

    And yes im sending zapping signals while i type!!

    Thanks again you are all fab.

    MB x

  • tying these faces ;-)

  • ok i'll try too!

    :-)

    8-)

  • Sorry but couldn't resist 8-)

  • Thats ok Darragh i know how to do smileys now!

    MB x

  • Hello my lovely cousin,

    Glad yesterday went well, and I am loving the photo!

    I'm afraid I still don't know how to do the smileys!!!!

    Jan

    Xxx

  • Hee hee thanks Jan!! When i saw jan50 on my email notification of this message i hoped it was you!!! The photo is my favourite! I usually HATE my photo. It was at a movie themed party and i HAD to be Dorothy so made the costume from scratch including adding red glitter fabric to Sarah's old red ballet pointe shoes!!! Hey ho Somewhere Over the Rainbow and all that. And the smileys are easy once you know. Just type : then - then ) for a normal smiley and use semi colon for a wink or number 8 for sunglasses. Those 3 will do for now! My flowers are still beautiful by the way thankyou!!

    Lots of love.MB!!! x

    p.s the kids call me mummy bear because Ted has always been Teddy Bear

  • :-) oh a girl needs a bit of glitter and a good excuse to dress up! ,

    Great nickname; my boys don't call me anything that I would like to post on here, teenagers!!!! LOL

    X

  • Well done with the smiley Jan!! ;-) xxx

  • Glad you found this site it has been invaluable to me over the last few months. I had surgery straight away as I was in pain and diagnosed at stage 4, I have had 2 chemos so far and have found the after effects manageable. I'm sure you will do well and positivity in the face of all the rubbish will stand you in good stead.

    Love from Amanda x

  • Thankyou Amanda,

    Good luck with the rest of the chemo. Are they doing a scan after your 3rd one to see how things are progressing? I presume you have 6 sessions planned. Anyway keep up the positivity i am sure it makes a huge difference in response to treatment.

    MB x

  • I had a scan after my first chemo to see the initial effect, if any, and I am pleased to say that my lung lesions had shrunk by 70% with no other signs of disease. So I will have another scan but not sure when yet. I am having 6 chemos with number three on Monday, good luck with yours and we will no doubt keep each other posted xxxx

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