Do I have it or not?

Hi

I'm 54 and feel healthy with no symptoms. Felt mass in my stomach_ thought it was muscle from my body pump class lol. Showed to doc who sent me for emergency scans. Now I'm having hysterectomy on the 12th nov. Taking out everything Inc omentum and lymph glands. Raised ca125of 225 and some small lesion on lung oh and cyst of 17cm. This as all happened within two months. Soooo scared. Just need truth. Gyno not said much but what he is doing. Anyone else like this on here? Xx

26 Replies

oldestnewest
  • You need to write down all your questions and ask your medical team. Go to your doctor and ask them they all keep in touch, as it's all on your medical records. Hope it all goes well for you x

  • Thanks soooo much. I did go to docs but report hadn't got to her. Everything's happening so quick which is good but scary too. Xx

  • You will have to have the operation as the cyst needs to come out, mine was 23cm and my story is very similar to yours only I went to dr's with bladder problems and found out I had a mass in my stomach. Your ca is raised so you could have cancer cells in your ovary and so this is why it's 'The Big Op' Hope this helps you but try not to worry as you will be fine and sounds like you have a good team looking after you. I'm sure you will get lots of replies similar to mine.

    Take care

    Lynda x🌷x

  • Thanks for your quick reply. Nice to here from someone with a similar situation. Looking on internet is a nightmare especially for postmenopausal women. How are you now and how long ago did you have op? X

  • It's now 5years and I'm fine. Having my last checkup in 2wks time and hopefully it will be my last.

    X🌷X

  • That's fab news and you've come this far so it will be fine xxx

    May I ask how old you are now?

  • Hi Yasmine I was diagnosed age 60 and I thought my expanding waste line was down to my age ha ha how wrong I was. I did have chemo after my op to make sure all hidden cancer cells were moped up. It can be tough at times but well worth the struggle as I am still here to tell my tale. My cancer was clear cell and my surgeon strongly recommended me having chemo so I went along with his advice.

    X🌷X

  • I had my op in may this year and all I was told was it's suspected cancer ... they found a mass on ultrasound.. my ca125 was 495 and rise to 796 by time I had the op... I got the news it was cancer at the end of June in post op meeting... I was quite ill after the op but getting home and resting I recovered to start 6 cycles of chemo I'm now cancer free... the not knowing it worst part as soon as you have diagnosis it becomes easier you will have a treatment plan... best wishes for your op and do keep in touch with how you get on 😃

  • Thanks so much for taking the time x and I will let you know and I'm so glad you are good now!

  • Hi Yasminj

    Found my ovarian cyst the same as you in July after about 3 weeks of feeling bloated. On scans was told it was a borderline cyst, possibly cancerous but wouldn't know until after op and histology had been performed. Had op 5th October - total abdominal hysterectomy with removal of Fallopian tubes, ovaries, (known as TAH & BSO), plus biopsies of omentum and lymph nodes. Also appendix was removed during op. Now 4 weeks post-op and recovering well. Got results 2 weeks ago, ovarian cancer was found in the 15 cm cyst and also cancerous cells found in the washout fluid from my abdomen. Chemo starting next week.

    This all has felt like a whirlwind and I still have questions. I keep a pad with me all the time so I can write things down so I can ask later. Also hospital gave me access to their Macmillan nurse even though I hadn't been formally diagnosed. I would ring your Consultant's Sec or Gynae Dept to ask about this.

    I know it is very worrying but I try to keep focus on keeping myself as healthy as I can, eating well (little and often as often I don't feel hungry) and walking both pre and post op. So my body is as strong as it can possibly be to undergo surgery and chemo.

    Wishing you well for you forthcoming op and big hugs.

  • Thank you so much. I think it really helps to hear from others going through same thing. Will definitely keep in touch and big hugs to you too xxx

  • I had a total hysterectomy on Oct 18th with both ovaries & fallopian tubes removed after a 12cm cyst was found on my left ovary in August. My CA125 was only 9, but my consultant offered to remove anything anyway so I wouldn't need further surgery in the future. I haven't had my results back yet but prior to surgery the consultant said he "didn't think it was cancerous. Like Lynne65 said, I focussed on keeping myself fit and well before surgery. While I'm recovering I'm only eating a little as my appetite hasn't returned, but what I'm eating is lots of fruit & other healthy food (I've actually gone off chocolate) and I'm going out for a walj every day to keep up my fitness.

    Keeping positive is hard, but believe me it's better than being consumed by worrying about something at the back of your mind.

    Good luck for your op.

    xx

  • Thanks xx it really does help to hear from others. Hope you get good news xxx Yasmin

  • Hi Yasmin

    I was in exactly the same position as you a year ago - I even had my op on the same date as you, 12 Nov. It is a shock and feels like a whirlwind. I found it really helpful to talk through what was going on for me with Ruth, the wonderful nurse on the Ovacome helpline, as well as nurses on the Macmillan helpline. I found I got a lot of emotional support as well as practical support from them - & both are needed. Ask them to help you prepare a list of questions for your consultant, and, if you can, take someone with you to your appointments.

    After my operation I had chemo. I've made a really good recovery. I found that the thought and worry of going through everything was much worse than what I actually went through. It wasn't pleasant, but it was manageable with good support - I rang Ruth and Macmillan regularly, & I also got some additional psychological support from Maggies (but mainly because my father died suddenly just weeks before my op.)

    Wishing you the very best of luck with this - & keep posting on here for support too

    xxxx Sundra

  • Thanks soooo much for the advice. I just can't work out if I want to ask certain questions and just have op then see. It's just so hard what to do. I feel as if I'm making mountains out of mole hills worrying everyone and myself when pray be I'll be OK. Then if I'm OK I'll feel bad. That's the other difficulty telling people and who to tell. It's not easy is it with a mashed up mind?

    Glad u are doing well xx yasmin

  • Hi Yasmin

    If it's any consolation I asked a lot of questions & had lots of doubts, etc, but in the end the surgeon did what he had to do, despite all my concerns - & I have to say he was completely right & did what was best for me. I felt as if everything was out of control and asking questions, looking on the internet, etc, was my way of trying to take control of an uncontrollable situation. (Looking on the internet wasn't very helpful for me!) There is no right or wrong way to deal with the situation - we can only do what we can do. My heart goes out to you - I know how difficult it is for you.

    I know it's hard to do, but if you can be really kind and gentle to yourself, that would be really helpful. A cancer diagnosis causes a lot of psychological trauma, that's not our fault - that's simply the way it is. So if you can, do things that nurture you and make you feel good, take care of yourself like you would a sick or traumatised child. And if you can catch yourself beating yourself up, then treat yourself like you would if your best friend was in your situation, just be really really kind. & if you don't manage to do these things - that's also fine - it's not your fault - you can only do what you can do.

    Sending you loads & loads of healing love & hugs

    xxxxx Sundra

  • Thank you Sundra. good wishes and sensible advice really does help. I think being busy helps. Been out all day today and watching Bridget Jones baby with my sister made me laugh so much and forget for a little time.

    Xxx yasmin

  • xxxxxx

  • Hi- I have a very similar story.

    in January i felt my stomach getting larger. i thought I had just gained a few pounds after the holidays but boy was i wrong. i let it go until March when i went to my OBGYN. He did a pelvic and immediately sent me for a CA125 and an ultrasound. was sent to an ONC who did CT scan and surgery all in a week. My hear was in a whirlwind. To this day I regret not going in sooner but I had no symptoms. i was working full time, very active, painting etc. Git me hard. Now I am 21 days post chemo. I have a CT scan next week to see what going on or not.

    Best of luck to you. You are not alone in this. Stay in touch. there is a lot of support here for you.

    XX Carol

  • Thanks Carol and hope everything is OK for you . Fingers crossed. I think we should all be hypochondriacs because being sensible doesn't bloody work does it?

  • I think as mothers you always put everyone else first. Think of yourself last so we put everything concerning ourselves on the va k burner.

  • I am 57 and my operation is on 10th November. I, too, am very scared. However my team are very nice and the pre-op nurse helped me a lot. I started with a mass and raised ca 125 of 67 - don't know what it is now. I have complex cysts on both ovaries and ascites and feel sick all the time. For this reason I am desperate for my operation even though I am frightened. You are definately not alone.

  • Good luck. Just think when I'm having my op you will be two days in recovery. Big hugs xxxx

  • Same story here. I had some abdo bloating, could feel a slight swelling, couple of weeks to get a gp appointment. She fast tracked me immediately, did a CA125 and ultrasound within 24 hours. CA came back at 13, scan showed a 20x18cm cyst. With two weeks I had a ct and mri, two weeks later a full hysterectomy plus appendix removed, they found a 4cm tumour, still unsure if its ovarian or tubal! Staged 1c2 as the large cyst ruptured minutes bef the surgery, but tumour removed in tact and all other histology was all clear. Was advised to have 6 cycles of carboplatin and have just had my second this week. Apart from feeling more tired I am coping well. Good luck to you all on this journey. xx

  • Thanks for taking the time to reply. Best wishes for a speedy full recovery xxxx

  • Hi everyone

    Had my op 12th Nov that went well. First week was terrible but am feeling OK now. Waiting for results of biopsy which I will get on the 5th , so scary thoughts returned again. They didn't take out my lymph glands so am hoping that is a good sign_ but who knows xxx

You may also like...