Just diagnosed

Hi I had an incidental finding of a pelvic mass during a routine MRI on my back. I was fast tracked through and had surgery on 23rd Feb a BSO. I heard nothing until Thursday when I badgered the hospital 5 weeks post op to find out the histology only to be told it is ovarian cancer and I need to be referred to a different gynae oncologist specialist at another hospital and have a hysterectomy and am now waiting for them to contact me to arrange this. I am shocked to say the least but have so many questions. What is the risk of developing breast, bowel or bladder cancer after having ovarian cancer and will I need chemotherapy?

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  • Hello Kim, 

    First of all I am very sorry that you have received this news but don't panic, of course that it easier said than done!!! I . You don't have any details yet but I am sure your medical team will give you all your options when you meet them. It's hard not to let your brain go into overdrive when you get this news and are in an information vacuum which is where you are at the min. I found that the worst time and it felt like it was going on forever but once you have more information and a plan of action it gets much easier. 

    On the basis of reading posts on this forum over the last number of months I would expect that you probably will have to have Chemo but until you have more details there is no way of knowing what they are going to suggest. What I would suggest you do is write down all of the questions that are running around in your head and have them ready for when you meet the Gynae Oncologist! 

    As for other cancers I don't really know enough about that but in order to protect your own mental health I would advise you concentrate on what is going on at the min I nearly tipped myself over the edge at the beginning thinking about such things and I just had to decide that my poor brain could only handle one thing at a time.....again however this is also easier said than done!!!! 

    Best of luck with everything. Keep checking in here there is a lot of help and advice available from an amazing bunch of women who know exactly how you are feeling and what you are about to go through!!! 

    Onwards and Upwards

    Dx

    Kim on the basis of the other posts and just for completeness of information I was diagnosed with Stage 1A but the reason Chemo was recommended was that the cancer cells were grade 3/high grade. As I understand it if the cells had been grade 1/low grade I probably would have avoided Chemo as the low grade don't respond to chemo as well as high grade cells. Good Luck!! 

    Dx

  • Hi it's so overwhelming when you first get diagnosed and your brain goes into overdrive with lots of questions, D is right, write them all down so you don't forget.

    You and your medical team will come up with a treatment plan that suits you and the type of cancer you have. There are lots of lovely ladies on this site with lots of good advise and tips about treatment and op's.

    Take each day as it comes, try to deal with one thing at a time as it can get very intense and if you can (sometimes it isn't possible) take someone with you to your appointments as I found that if I didn't understand something or forget to ask something my husband would. 

    Take care of yourself and keep in touch

    Xx

  • Hi Katiep59 

    Sorry you have found yourself here and right in the middle of the Easter holiday too .  At the moment there is no clear answer to your question regarding chemotherapy, so my advise would be to try and distract yourself as much as you can ( never easy) try not to read too much or google search as this will add to the stress of waiting. As for other cancers I would take one step at a time, when all return to work next week maybe ring the hospital and find out when you will be seen and maybe write down some of your questions so your prepared. Always good to have a friend or family member go to appointments with you too . 

    Good luck and we are here if it all becomes to stressful over the next few days 

  • Hi Katie sorry to hear your news . I too was diagnosed ovarian cancer in 2008 . I was fortunate enough not to need chemo but had a FAH and appendix removed . Follow up blood checks ca125 every 3 months , 6 then finally yearly . Am lucky as no recurrence of breast , bowel . All treatments and cancers are different and am sure your doctors will advise and inform you of all the options . Things have progressed and have moved on since "my day" if I dare say and am here with great thanks to our wonderful nhs that we have . I wish you well and yes it is a lot to take in at first and things seem a bit foggy to say the least .when your armed with the facts you can then put that best foot forward .good luck

  • So sorry to hear that you've had to wait and also badger to find out your results. I'll share my experience with you which may help! Following an agonising pain in my left abdomen just before Christmas which initially was thought to be kidney stones ! I was referred on 7th Jan this year for a CT scan as I continued to feel unwell. That scan took place on 21st, I received a telephone call from my doctor a week later in the evening saying that a reasonably large mass had been found, as they couldn't rule out cancer I was going to be fast tracked referred. I'm also 56, post menopause (no periods for about 3 years), no children so a higher risk for cysts/ masses.

    I received a series of further investigations: 2 ultra sounds, Contrast dye MRI and finally contrast dye CT. As these showed a 10cm by 9cm complex mass with multiple walks which were thicker than they would like to see, I was then referred to Taunton Musgrove Park hospital under Dr David Milliken the head surgeon consultant Gynae oncologist. I saw him on 2nd March and was fast tracked for a TAH BSO plus removal of Omentum on 8th March this month. My appendix was also removed !

    Frozen section pathology done during surgery showed no obvious signs of cancer -Great. So I came home on day 3 to recover from the Op. One week later (last Thursday 17th) I received a phone call from my surgeon, he told me that cancer cells were found in the lining of my cyst and also in the abdominal fluid. Also the cyst part of the mass had ruptured before surgery.  I was very surprised to hear that I have cancer !, it's clear cell carcinoma. I understand mine was caught early and I believe I am stage T1c grade 3 so I will be having Chemo, I meet with another Oncologist on this Tuesday to find out more. I will be asking for a copy of my Path report and confirmation of stage and grade.

    I cope by only focusing on what has been confirmed, try not to panic, try not to read too much, you need your full pathology results and your staging and grading. That should be one if your first questions (if you want to know of course) . Ask questions on this site and make a list of things you want answers to, take someone with you to take notes or prompt if you forget any points.

    Big hugs for you x

  • I forgot to say that total hysterectomy will sometimes get rid of all cancer cells dependant on stage. I'm having chemo due to the spill into my abdomen. I logged on to a brilliant site called HysterSisters for fantastic help and support - groups are set up for each week for women having all types of hysterectomy in that week, great comfort to share experiences and healing and ask questions etc- and also look up Look Good Feel Better (Uk and US) for workshops for cancer patients, hair, scarves, make up etc. I'm booked on to a workshop in May. I found the US site and clicked the Global button to find the UK site or they are on Face book. You may not need Chemo though xx

  • Thanks everyone it is really reassuring to talk to others who have gone through it :)

  • A cancer diagnosis is soooo much to cope with and the way yours was delivered leaves a lot to be desired!  That being said, the focus now needs to be on developing a treatment plan with your team to treat the OC.  I'm in the US, and the way it seems to go here is that if you're stage 1a or 1b (hardly ever caught at that stage), they don't tend to recommend chemo as it hasn't been shown to improve outcome which is quite good at those stages.  With most stages beyond, chemo is usually part of the package.  I had 6 cycles of carbo/taxol, typically the frontline therapy.  I was absolutely terrified, and also had a million thoughts of what if, what if, etc and also what other cancers am I now going to get.  In my case although I am BRCA negative a doctor recommended I remove my breasts after chemo as I have a strong family history of breast cancer!  I was totally overwhelmed and would reco at least a little Lorazapam or something to take off the edge if you are having trouble coping, as I was (plus I also went into counseling).  I am 2 years out of chemo now and am in remission, followed every 3 months and soon if I am OK, will be every 6 months.  Once the dust cleared from the original diagnosis I dealt with all the other stuff.  Other doctors told me to keep my breasts, but I do undergo surveillance with mammogram and MRI, alternating tests every 6 months with twice yearly visits to breast oncologist.  So far I've been clear.  I also see a gastroenterologist every 6 months (I live in doctors and also have 2 jobs to dig out financial issues in large part created by the cancer so I am busy!) and he has recommended a colonoscopy every 3 years.  Ovarian, breast and colon cancer can be related but the majority of us with OC will not go on to develop these other types unless there is a genetic mutation, so you may want to discuss that with your doctor.  I have not heard of any relationship with bladder cancer.  I think what you may be thinking is that if the OC spreads, it may affect these other organs in the pelvis but that wouldn't be a primary cancer of that other organ. it would still be OC and treated as such.  Probably too much information to digest right now, so just take a deep breath and get your treatment plan for the OC.  Hugs. 

  • Hi Katie Sorry to hear about your diagnosis - it is a shock to start off with.  I found talking to Ruth, the Ovacome nurse, and Macmillan an absolute godsend, and particularly at the beginning - just a suggestion - & our lovely ladies on this site too, of course.  Best of luck xxx

  • Hi Katie

    Welcome and so sorry that you are going through this. I had a very similar experience, I had no idea for 9 weeks that what I had removed was not a cyst. There was another lengthy wait before I knew for certain what was happening. Because it was caught in time and removed intact I also did not need chemo and six years plus I am still here. ..doing everything I did before all this and more.

    Try to be assertive, this is hard after major surgery and the huge shock, and get an appointment sorted out ASAP. Ring the Secretary to the Consultant to get an appointment to see what the treatment plan is for you.Use your GP if he or she is good.

    The Ovacome nurses are very good , they will be in the office on Tuesday ,consider giving them a call.

    Take care and keep in touch with us.

    Love and hugs xxx

  • Thanks Charlie I am going back to my consultant on Tuesday to talk it through before I go to see the specialist and my eldest daughter and husband are coming.  Do you have to have regular check ups? 

  • That's a brilliant idea to bring somebody with you and I'm.glad that your appointment is so soon. I was told check ups would be needed for 7 years , but the trend now is  , after a while, to only be seen if you have problems. This is alot better all round.

    Take care x

  • Hi Katie,

    So sorry to hear of your diagnosis. It's always such a terrible shock (especially when they don't tell you & you have to chase them up! That's incredible that happened to you!) A lot of the other ladies have given you great advice so I can't really add much to it at this point. But when you have your appointment on Tuesday you should find out more about what kind of ovarian cancer it is, and what stage/grade it is. That's what decides whether you should have chemo. If it's early stage and was all contained, you may be able to avoid it, but even then they may recommend it anyway just as a "mop up".

    I'm sure they'll walk you through everything then - and it's great you're bringing your daughter and hubs with you as it can be hard to absorb everything all at once. So sorry you've had to join our little club here, but you've come to the right place as we've all been through it and we're here for you. Sending all best wishes and a big hug.

    Kerry xx 

  • Thanks Kerry :)

  • I saw my Consultant this afternoon and she made me feel slightly better about everything. She said to go on holiday and she will get me in to do the hysterectomy at the end of May for me. They will remove the uterus, cervix and omentum and have a good look around - her words! Then depending on the histology of all of that will determine what happens next. So I have to focus on Florida in 4 weeks, enjoy it and get plenty of rest and sunshine ready for my op when I return.

  • Have a fab time in Florida I was there in 2014 and absolutely loved it!! You can see from my name that I am a huge Harry Potter fan and Harry Potter world in Universal was out of this world and I would highly recommend it!!!! Have a fab break and put everything else out of your mind and enjoy yourself!!! 

    Dx

  • Thanks yes we went the first year it opened but apparently it's even better now! X

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