Hello

I have been diagnosed with stage 2b high grade serous carcinoma, and I'm bricking it ! Feel positive most of the time and then time for bed and my brain wakes up! Thinking of so many things I end up on the Internet ( last night until 4am 😳)

Don't want to freak family and friends out with my worrying .

My friends and family have been amazing, since diagnosis different groups of friends taken me out every day , lots of laughter and positive thinking πŸ‘πŸ»

How this all came about - my aunt had breast cancer not long after Angerlina Jolie went public about her brca 1 , she was referred , they thought she was borderline for the test , but ( thankfully) did it, she had the gene also her 1 remaining sister and 2 brothers ( my father being 1 of them )

Then I was tested, I had the gene , we were all devastated but positive , get rid of all my bits then get on with life πŸ‘πŸ»πŸ‘ŠπŸ»

My breast surgery for double mastectomy and reconstruction was cancelled 4 days before due to bed crisis, I was gutted again , but I'm so glad it was.

I had a call on Friday 29th April asking if I wanted my bso on the Saturday , I bloody jumped at it, at least 1 of the ops would be out of the way πŸ‘πŸ» all went well, no visible signs of cancer my surgeon was happy, went home good recovery, no signs of menopause πŸ˜πŸ‘πŸ»πŸ’ͺπŸ»πŸ‘ŠπŸ» Start planning on return to work, when the worst news was told. 2B on both ovaries and pelvic tissue.

My surgery is 2nd June , I'm having womb, omentum, and lymph nodes removed, scrapings from organs ( not sure I heard that right - a lot of info to take in ) .

I go from feeling 'I'm going to annihilate this b*****d' to ' how am I going to get though this'

Sorry for the long post

Diane x

34 Replies

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  • Hi Diane,

    first of all sorry to hear of your diagnosis. It's so much to get your head round that your thoughts and emotions will be all over the place.

    I was diagnosed end Dec 2015 and since then I ask the question just about everyday how am I gonna get through this? But the fact is I am, and so will you.

    I have had 4 chemotherapy of carbo/taxol and on 17th may had extensive ultra radical surgery. All of this has been difficult but everyday goes by and I hopefully get closer to hearing the words "no evidence of disease".

    I was having genetic testing for the BRCA gene when I found out my diagnosis. I too was of the hope that I could get everything removed before it became a problem.

    Since then my older sister has tested BRCA 1 positive and my younger sister was BRCA negative. My daughter is getting her blood test done on Friday.

    It is a really horrible time in my life, and all I want to do is get back to some kind of normal. I try to remember it is just for now and not forever.

    You have stared the journey now and somehow you will manage and cope with all the ups and downs it throws at you.

    There are many great people on this site who have answered many a question for me so don't hesitate to ask.

    Just keep remembering u can do this!!!!!

  • Thank you for your lovely massage, sounds like your family are going though hell as well , I've spend a lot of hours on this forum last night (early morning) and found it so helpful , and good luck with your battle , WE can do this xx

  • Your right WE can do this. Good luck for your surgery on the 2nd. X

  • Yes, this is an amazing forum. I am nearly 5 weeks past my hysterectomy (all bits removed including the omentum, ovaries etc. I don't know the simple way to write it!) and am waiting to hear when chemo will start.

    I was a bit late getting treatment as the cancer was discovered in January but I delayed everything for 3 weeks to go to New Zealand to see my new granddaughter. I just thought that I might not get the chance again, or get travel insurance if I was being treated for cancer!

    We all spend time worrying but somehow once I accepted that I was one of many women with ovarian cancer - and this site helps with that-and that we were all going to deal with it as best as we could, I became more accepting of my condition.

    I wish you well with your journey and am pleased that you have found this forum as it will support you tremendously.

  • Congratulations on your new little granddaughter. Ann xo

  • Hi Diane that is a bit blow to get but you recovered from one operation and will recover in time from the second. I agree it is a huge knoc but you can do it. You would have had to have all these bits out at some stage in the future because of the braca gene so look upon it as being done sooner rather than later. I wish you well for the surgery and while you are getting a battering at the moment, all this will pass and if you need chemo, there are plenty options out there. So yes you can beat this.

  • Thank you x

  • Hi Diane,

    You so can do this!

    No one was a bigger coward than me, but I got through, you find the strength from within, the strength to live will carry you through.

    Start planning some small things to look forward to, spend time with family, do what you enjoy doing,pamper yourself.

    If you need more help and advice, speak to us ladies here we are always full of help and advice.

    You take care and look forward

    Love

    Carole xxx

  • Thank you Carole , no cowards in this hell xxx

  • Dear Diane, 4 am is just rubbish isn't it. I stopped keeping devices by my bed so I wouldn't be tempted to use them. One evening my toe was in horrible pain. In the morning I had a look expecting something awful and it was slightly pink! Go figure. Proved to me that 4am makes everything a horror show.

    Please enjoy the next few days with your friends and family. The op is a big one and you'll need lots of rest and recovery afterwards. I discovered this site after I had a TAH BSO and was found to have 2a fallopian and ovarian cancer. I've started chemo now and the ladies here have helped me relocate my fighting spirit.

    T. X

  • Good idea moving my iPad πŸ‘πŸ» from what I've read last night , the ladies here are lovely , and good luck with your chemo xx

  • Hi Diane as all the other ladies have said somehow we all get through it and you will to, somehow we find strength and fight it!

    You are going through a very tough time I'm so pleased your family and friends have rallied round and made you laugh and had some positive times.

    Good luck with your surgery hope all goes well, let us know how you are doing and. There is great support on this site, everyone is lovely and will always reply.

    Take care

    Karen

    Xx

  • Thank you , Not long to go to get this bit out of the way πŸ‘πŸ» everyone comes across as lovely and helpful x

  • Hi Diane, I just wanted to add my support and send positive thoughts to you. We are all on our own journeys but many times I would suggest we are travelling on the same road and there are so many fantastic women on this site who can give you wonderful insights and information not to mention the overwhelming support to help you through the journey.

    You have already managed to surmount various hurdles, so the next step is the 2nd op, I had my surgery in November and overall, the recovery was uneventful. If I was to give a word of advice ask for an epidural the pain relief was fantastic from it.

    Great to see you have good support from family and friends, it is good when they do practical things after surgery. I had meal makers, a friend who regularly came and gave me hand, head , ahoulder and foot massage which I strongly recommend, My now husband , we had been to gether for 21 years but finally tied the knot last Aug 2 days after my 2nd chemotherapy and it was a perfect day, anyway he now knows how to use the hoover and washing machine. Bliss.

    So good luck for the surgery and hopefully all will go well

  • Congrats on the wedding X , and I'll ask about epidural thanks for the tip X and fingers crossed I'll have a positive update next week x

  • Sending you positive vibes and prayers. Stay strong. I was diagnosed with Stage 3c ovarian cancer in January, had 6 lots of chemo and am having the debulking op next month. It is a frightening,shitty time but we can get through it. My youngest son marries in October and I intend to be around to see my oldest son marry in 2018. Gotta be positive! Take care. Jeannine xxx

  • Everything you wrote mimics my journey. I am a chronic googler ...we are just looking for reassurance and the one story to give us hope.and there are plenty out there.i read one recently of a lady stage 3 who hasn't had a reoccurrence in 29 years..however ...I would advise setting limits on your searches. I know it's hard to go cold turkey but set aside time for googling and only that time. Good luck

  • Hi I was diagnosed in Nov 2007 with 2b. Had surgery then 6 rounds of chemo. Was fine for nearly 5 years then had a recurrence Had another 6 rounds of the same chemo and treated again after 2 years. I have just finished and saw the oncologist on Friday. My scan was ok and my ca 125 back to normal. I am Brca negative but I know from speaking to the consultant there are more treatments for Brca positive cancers. 2b is quite an early stage to be diagnosed and my oncologist was surprised mine came back the first time. I went back to work each time and have only now retired because of my age. The surgery was fine. I was only in hospital for 5 days and was feeling fine after a couple of weeks. There are lots of people here who will give you great info. Hope all goes well Morag

  • Hi . So sorry to hear what you're going through. Love and hugs and hope everything goes well for you. Whenever you need them the ladies on the site will be there I am finding them invaluable at the moment . They will give you good advice and boost you up when you're feeling low . I hope Surgery goes well and that you can beat this b*****d. Love and hugs. Chris xx

  • So sorry you've had such a shock with your diagnosis, Diane. I well remember my feeling of horror on my diagnosis - and fear!! We all prepared ourselves for the worst, I actually managed to feel a sort of calm acceptance. Had the op in November, started chemo two days before Christmas, and boy, were things looking bleak!! That was nearly TEN years ago!! Didn't think I 'd see the first of my youngest son's babies born, due four months later. Well, I did and they've now had baby number four to complete their family, making the total sum of eleven grandchildren, for my husband and me to love and enjoy - plus a great grandson and another one due in July. We've had some super caravan holidays, been abroad and I feel so lucky. Every birthday, Anniversary, Family achievements has been Celebrated and life so much more appreciated.

    The reason I'm blathering on about this is because I want to tell you not to believe everything you read on the Net, which I used to do. Remember when you read frightening statistics, look at the lower numbers. If, say, eighty percent suffer with something, that means twenty percent don't. I used to tell myself that I would be in the luckier twenty percent and it helped me feel optimistic in all sorts of ways.

    Good Luck with your operation on Thursday. I'll be thinking of you. Hopefully it won't be any way near as bad as you fear and you'll recover quickly. Sorry I've gone on so much. Keep in touch with us all and share your feelings - and have a good moan when you need. 😁

    With love and best wishes, Solange. 😊

  • Hi Diane

    So sorry to hear of your diagnosis. I can still remember how it felt-I think I always will. I had the same surgery as you are having at Christmas and it wasn't as bad as I thought it would be. I was surprised how quickly I recovered. I've just finished the customary 6 cycles of chemo. I got through it and so will you. If I couldn't sleep during the night (I got a lot of leg pian from the chemo) I found it was better to get up for a while rather than lay there and let my mind imagine all sorts of horrors. I would

    make a cuppa and read for a while or do a jigsaw. Say away from lit screens like a computer-they will keep you awake!

    Good luck with the surgery. Let us know how you get on. Sending love and virtual hugs

    Lou xxxxxxxxxxxx

  • Hi Diane. I'll be going through similar op on 6th June. I know what you mean about the Internet. I dont look no where near as much now but it did have a magnetic power over me and i would always end up feeling dreadful. Good luck with the op and treatments. This site will give you the support that no one else really can. It has been my rock. Tracey x

  • Good luck with your op on 6th June Tracey. Ann xo

  • Thankyou. Started countdown as I'm admitted a week today for some lovely forced bowel movements 😣

  • Hi Diane, I'm sure your head is all over the place at the minute, you've had a lot to take in. Your surgery is next week, which is great that your not having to wait weeks for it as waiting is awful but YOU CAN DO THIS.

    I was diagnosed with stage 3b high grade serous in June 13. My advice, get surgery over, concentrate on recuperation, focus on you, accept all offers of help, a little walk every day starting in the garden, progressing to your street and gradually building up each day. Don't expect too much of yourself too soon. Don't lift anything heavier than your kettle with some water in it. Do as you're told by the physio.

    You will get an appointment to see the medical oncologist who will go through chemo with you. Mine started about 4 weeks after surgery. Worry about the chemo at that stage, for the minute, surgery and recuperation are your priorities. My mantra was ONE DAY AT A TIME.

    I had an epidural for pain relief, the anaesthetist will go through options with you on your admission. I was totally pain free with it. You will probably have a cathetar in post op so a couple of nighties until you get it out, then you can go into your PJs if that's what you prefer.

    You've been through surgery once already, you recovered and you will do so again.

    I think the Macmillan ad on TV got it spot on, when you get this diagnosis you do feel like your falling, because someone has punched you in the face in my opinion. But in time, you get back up again, dust yourself off and get on with your life, albeit, differently (in my case anyway).

    Good luck with your surgery on 2nd June. Let us know how you are doing, you will gets lots of support from us on this forum.

    Ann xo

  • Thank you all , it is a scary time , but trying to be positive , didn't look on Internet last night , going for Sunday lunch with the family today followed by watching the rugby , so good distraction , your experiences give me more information and hope so thank you all again

    Diane xxx

  • I completely understand your devastation. I am so sorry for this diagnosis. I too am up nights. I keep busy during daytime and have awful anxiety when not focused on other things...like my painting, friends, socializing when I can. I had BC when 46 and mastectomy then and chemo. I raised my son and went for 22 years then OVCA stage 2b. Total hysterectomy etc. and horrid chemo which left me with neuropathy in both ankles/feet and fingers. two years out and they find a spot on my remaining breast. Had the mastectomy February '16. I am on Letrozole for double positive cancer but more upsetting, the tumor had also a second small tumor which tested triple negative. I meet with onc. June 8 to discuss treatment for triple negative (chemo??). I am afraid to death of more chemo because I am fearful I will end up in a wheelchair. I am robust, healthy in every way except for the cancer thing, BRCA 1+ (determined AFTER OVCA) and was planning a mastectomy even prior to diagnosis of BC.

    I try to stay on positive side but nights are horrid. And the pill I am taking is putting through second menopause and hair is thinning. All this to say I understand...stay busy. That is the only thing that helps me right now.

  • I really want to give you a hug , sounds like you've gone through hell and still there , really feel for you xx

  • Hi try not to worry about the operation think about how to be comfortable afterwards. Plan what you need to take with you. Soft nighties ear plugs phone charger etc. worrying will damage your resolve

    I was diagnosed with 1C in 2012 after three years clear recurrence in 2015. I had surgery in November to remove pelvic tumour and part of my bowel. Although I hate my colostomy it was obviously essential.

    Surgery is the start of recovery and potential cure. Good luck you will be fine

    LA xx

  • Thank you , and thank you for the tips , hope your well now x

  • Such lovely positives on here lift our spirits immensely, I have been reading all the posts and yes we do go through our own little hell but we do come out the other end. So we keep on going enjoying each day hoping for the best for each other and in particular for those having surgery next week. Be kind to yourselves, buy some cool nighties, hand cream and vaseline for the lips as they tend to go dry in hospital. Some light reading or some music is good to fall back on in hospital. Some loose crop pants and slip on shoes for when you are home again. I will everyone the best for next week, be it surgery or chemo or results.

  • It's helping a lot , the kindness of strangers , thank you for the tips and the good wishes X

  • hi diane

    just chiming in. the other ladies have said it all. you will get through, try not to be afraid, its our enemy. you are stronger than you know, and are doing all the things which will buy you years of happiness, hopefully.

    i am 4 c, one year out from diagnosis, and ned status. feel as if ive been given a rare opportunity to really cherish each day. all the best to you!

  • Thank , and all the best to you to xx

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