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Advice needed

Posted , 5 users are following.

Guest
Guest

I have a 11cm cyst on my right ovary - which has a solid part as well as fluid to. 

I've had ultra sound, ct scan and MRI scan. 

My consultant/surgon called me today and they are still not sure even with having my MRI results so they have had to take it back to the cancer team which should of been last Friday but because we had lots of snow it didn't happen so it will be talked about this Friday and my consultant will call me Friday afternoon to let me know what they have said. 

I asked if we looking at cancer and he said it's unlikely and said all my bloods are normal. He said that if my bloods were not normal then he would do the operation as emergency next week. 

Has anyone experienced this before?? I am so worried! I am only 23 years old.

So the cancer team will tell him if he can go ahead with keyhole or not. 

0 likes, 33 replies

33 Replies

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  • ange34
    ange34 Guest

    Posted

    You will have a plan very soon. They will take very good care of you and they totally understand that your needs at 23 are very different than someone of my age. Please let me know how you get on I am really hoping that you get good news very soon xx
    • Guest
      Guest ange34

      Posted

      Thank you. The best outcome from the cancer teams mdt is that my consultant surgon has the go ahead to do keyhole rather than open. 

      All this waiting until tomorrow afternoon is causing so much anxiety. (I already have mental health issues) 

      I will do x

  • ange34
    ange34 Guest

    Posted

    I am sorry it is causing you more Anxiety. Have you tried meditation for your mental health? I used to lie in the bath and listen to Tibetan monks chanting (weird I know but it helped) or on you tube yoga nidra for relaxation. Be kind to yourself xx
    • Guest
      Guest ange34

      Posted

      No I haven't tried that. I use a lot of distraction. 

      I am on quite a bit of medication for my mental health and under adult mental health team. 

      When I have my op my support worker will be there so they have been amazaing support wise with all this cyst stuff, scans and things. 

      What is recovery like from open surgary ? 

      As I got a really horrible feeling that's what I'll end up having as my hosptail can't tell by scans so having to go to diffrent hosptail for cancer team to look and for my consultant to do key hole they got to be 100% sure it's not cancer as by doing keyhole they would have to pop the cyst to get it out and if cancerous would be dangerous.  Xx  

  • ange34
    ange34 Guest

    Posted

    The surgery is not as bad as you might imagine although you will need a lot of help. Mine was five weeks ago I was in hospital for four days. The scar is large and the internal stitches take a lot of healing. I expect to be off work for eight to ten weeks. Pain has been very manageable as long I keep up with tablets. They will take good care of you in hospitals. Try to get some sleep x
    • Guest
      Guest ange34

      Posted

      Hey

      , just had a phone call from the consultant, and my local  hosptail and The cancer team at a diffrent hosptail  are all struggling to say weather or not it's suspicious ether way. So they can't do keyhole surgery. So they will be taking ovary too. So will be open surgary. Which I'm so scared about. 

      He is booking me an appointment to see Him in about 3 weeks time to talk about it all and with any questions I have. 

      He said The cancer team are resured that all my bloods are normal, the rest of my pelvis, tummy and all organs are fine too. 

      I asked if we looking at a cyst or something More now and he said it's a cyst as it's fluid but it's this certain part they having an issue with. 

      He said if there was any pre cancerous cells by removing the ovary they would be removing the cells/ cancer from my body by doing that. 

      My consultant surgon also said that he will not go ahead with the operation with my support worker from the mental health team I'm under is back from leave (I explained to him on wedneday my situation) 

      And tips or anything on having open surgary? And any questions I need to ask consultant surgon when I see him? Xx 

  • ange34
    ange34 Guest

    Posted

    Hi I hope you are doing ok after your phone call. When I initially heard that I was having a laporatomy I was concerned but once I had looked into it I realised it was probably for the best, the incision means that the recovery is a bit longer but it means that you are mending on the inside and you have less chance of over doing it.

    Question I would ask are wether it a horizontal (bikini line) incision or vertical

    How long you will need to recuperate

    How long you will be in hospital

    What kind of pain relief I had general anaesthetic and spinal

    I am sure I will think of more.

    How long is your support worker away for? Do you get someone else to help support you? Please try not to over think things but may be try looking at Macmillan support group to get some more support the waiting is really the worst xx

    • Guest
      Guest ange34

      Posted

      Hey! 

      I'm still a bit shaken a little but I'm ok thanks. 

      How long is your recovery time? What did they remove for you? They taking the cyst and my right ovary. 

      Thank you so much for those questions I'll defo write them down! 

      He is going away between the 19th march until 3rd April. There will be other people who work in the team if I need them. But not sure what will happen when he is away support wise. 

      Like I said cancer team are resured with my bloods normal and everywhere else in my body including organs are ok. 

      I guessing after they have taken it out they will get it tested?? I can't bear to think having ovarion cancer at age 23. So scared x 

  • ange34
    ange34 Guest

    Posted

    Hi glad to hear you are ok. A good bit of advice I was given whilst waiting for appointments was to make sure you had something nice to do each day, simple things like having a bath, going for a walk or meeting a friend it makes the time go faster.

    In answer to your question I had everything removed both ovaries both fallopian tubes uterus/womb and omentium as well as the tumour.

    My surgery was planned so they could take a 'frozen section' whilst i was under the general anaesthetic.

    They then can give you initial results of hopefully that it is begnin but not the staging which is given for Borderline ovarian tumours or ovarian cancer which would be given several weeks later. Sending positive vibes I wanted to know lots of information but please remember that the majority of people that use forums etc are not the people who have a 'simple' cyst removed x

    • Guest
      Guest ange34

      Posted

      Thank you. I'll try and do something nice each day! I like that idea! 

      My consultant surgon has only said to me so far just about removing cyst and my right ovary and that's it. 

      I'm worried they will remove my womb ect as only 23. 

      So was yours cancer? Were your CA125 raised? Mine were normal and all other cancer blood tests were normal too. He said on phone yesterday they all other areas like pelvis, tummy, and all organs are normal and fine. 

      What do you mean by the last part? 

      So scared it will be cancer as they doing open surgary - what do you think about that? 

      I know that my scans including MRI were not clear enough to tell them ether way if it was safe enough to go ahead with keyhole. 

      I hope this all makes sense ?? Sorry for long post x

    • glenn04668
      glenn04668 Guest

      Posted

      "I'm worried they will remove my womb ect as only 23." Holly, set boundaries, be polite but firm. Or have someone else (support worker?) do it for you. I know this goes against every normal instinct. It takes courage. It takes unwavering, uncompromising firmness. Health care workers know what's "best", the patient isn't "thinking clearly" and most of the time that's pretty true. So, they use every manipulation in the book. But, it's your body and your life. Trust your inner voice. Leave a paper trail. It can be done.

           When I had my eye surgery, I felt my boundaries weren't being listened to or respected. The doctor was a great surgeon with a great big ego, God bless him. He and i talked and he agreed to some things. Afterward, i wrote those things down. Then mailed him one of these letters: Thank you for your patience and understanding. Just to make sure i have it right, you agreed to: this, this ... and this. Certified mail, return receipt, staple every paper the post office gives you to a copy of the letter.

      Get well soon. 🐭

  • ange34
    ange34 Guest

    Posted

    Hi Hope you are doing ok today?

    I have not been on line for a few days, I am pleased to see you have got some advice from others. Everyone's journey is different especially when there is a big difference in age as different things have to be taken into consideration. I hope you have managed to do something nice today? I have been given the all clear to drive again so I am going out for a little drive later. It is the little things that you take for granted that you appreciate when you get them back. Best wishes x

    • Guest
      Guest ange34

      Posted

      Hey,

      I've had a rubbish few days but hoping tomorrow is better it's a new day. 

      I haven't done much today but will do something nice tomorrow! 

      That's so good you have been given the all clear to drive now! 

  • ange34
    ange34 Guest

    Posted

    Thanks it is good but I am a bit nervous to be honest so I went for a walk instead.

    That is a good way to look at things, and one day closer to getting sorted.

    I have a saying in a candle which is 'be happy for this moment as this moment is your life's I know that is really hard to do when you are going through this but it did help me a little bit. Enjoy whatever nice thing you decide upon x

    • Guest
      Guest ange34

      Posted

      Thank you. Just things have been overwhelming today x 
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