Waiting for diagnosis after surgery

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Waiting for diagnosis after surgery

I'm really frightened. I had a hysterectomy 15 years ago and was really well until earlier this year when I started getting spotting PV for no reason. GYN arranged a ultrasound and bloods which were inconclusive. Had a Trachelectomy earlier this week 05/08 but still don't know if it's cancer. I can barely breath, I feel so sick with not knowing.
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Re: Waiting for diagnosis after surgery

Hi Evaboo I was where you are last week waiting for my pathology results to come back after my hysterectomy. However I knew the day they would ring me. Since my diagnosis on the 1st of July I have noticed that the waiting not knowing plus not having any concrete knowledge of when to expect to hear has been the hardest time for me. So I can imagine the torment you must be going through. It's like nothing I have experienced before in my life. Do you have contact with an oncology nurse who can liase with the doctor/hospital and help you to keep your anxiety levels down? Did they tell you when you should hear? I was told it would take 5 or so days for the pathology work to be completed. I had my op on the 31/8/14 and got my path results 8/8/14. I have read that getting cancer back is even harder to deal with than the first diagnosis, does this relate to you? Have you tried ringing the cancer council line to share your feelings? As soon as I found out about my cancer I put counselling into place because I find it helps me. These are just some ideas. It can be hard to think straight when you are filled with fear and anxiety. My oncology nurse told me to be gentle on myself, to take each day as it comes and to only deal with the facts that you know since anything else is not a certainty. I don't know if these words will help at all. I am only new to this stuff. There is a gyny group here I have hooked up on but am yet to join a chat session with them, I have been told it gives good support. Take gentle care of yourself and I hope your news is good. Juno
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Juno, thanks for your help. You've no idea how much it helps to know some one is actually listening to me. I take your advice, deal with what I know and try and stop guessing. I have such awful mixed feelings. Because I don't have a diagnosis, I don't have any ONC support. No ones actually said it but it feels like 'you don't need support because you haven't got cancer yet'. I don't know where to start. My hysterectomy was due to menoraghea (exceptionally heavy, no break bleeding) that came to a head and got very ugly. I didn't have time to worry about it. I saw the GYN on the Tues evening and had surgery on the Thurs morning. It never even entered my head that it could've been cancer. I'm such an optimistic and strong person I don't understand why I'm such a mess. I feel like I have three possible outcomes......1- I might be totally stressing out and then get the all clear next Monday, then feel like a fraud. 2- they find cancer cells in the cervix now they have removed it, the cancers contained and it's all over or 3- I need to move forward and deal with cancer and do what I need to do. When I write it down, it looks like none of its so bad in fact, it looks ok! So why am I this stupid stressed out princess!? What am I supposed to do / think? I just feel like it's all been a bit back to front. Should have had a diagnosis then surgery, but it just didn't stack up that way I guess. Once I get my head around it I'll ring CC but at the moment, words just don't come out. Thanks and stay in touch, let me know how it's going for you too, you matter too! Evaboo
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Hi Evaboo You are very welcome. I completely understand some of the thought patterns that go through your head at a time like this. I have found it a very personal and lonely experience but I have realised that to talk to someone who has had or is having the same experience is very comforting. Although they have been few. The uncertainty of a diagnosis leaves you open for a lot of guessing. The way I look at it though, it is important to keep the stress levels as low as possible to remain mentally and physically well. Easier said than done I know. The last couple of days before results were like and emotional roller coaster ride for me so if that hapens to you know that it is normal to feel that way. Yes you have those three scenarios and 2 of them are best case the third not so. I hope you fall into category 1 or 2. However they can do amazing things these days and positive thinking is much better for your stress levels and therefore your immune system. As for being a fraud, when I first recieved my cancer diagnosis I got proactive put all the neccessary services in place and made myself aware of the resources available to me. I am a realist. That included joining CC. I had that very same thought. That I would get it all out there, have the hysterectomy and be given the all clear, problem solved. Me making a big deal out of nothing and hence being a fraud when so many others are really going through the real deal. However it is all scary stuff whether the end resuts are postive or negative. The waiting, medical words, feelings of isolation and loneliness, tests, operations, needles, wondering and predicting so don't be hard on yourself. For me it is certain, I have cancer and there are cancer cells still in me. I am going to radiotherapy. I am waiting for my radiotherapy oncology appointment to find out the legnth, depth and type of treatment to expect. No going back unfortuntely. I will keep positive its the one thing that cannot be controlled by cancer, I will have down times but I will try to make them as few as possible. I have had some very strong people in my life who have had cancer and they have fought the battle with stregnth and determination, so will I. I have to I have 2 beautiful kids to watch become adults and do all the adult things, I want to get my degree, I want to do honours, I have plans and I have been told plans are good. Thats way more real to me than anything else at this stage of the game. You will find your inner stregnth if you look for it. Juno
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Juno, You are brilliant! You get me! You're so, so right about dealing with what I know and keeping my stress under control. I'm just not a poor me kinda person but this has really impacted me more than I can justify..... Or explain. My mum is a two-times cancer survivor, many of my friends are survivors, all doing well. I know it's a kink in the road, not a disaster. I just need to believe myself lol. Just cos we can't see the whole picture doesn't mean it's not a beautiful one. :0) Keep me posted
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Re: Waiting for diagnosis after surgery

Juno, You are brilliant! You get me! You're so, so right about dealing with what I know and keeping my stress under control. I'm just not a poor me kinda person but this has really impacted me more than I can justify..... Or explain. My mum is a two-times cancer survivor, many of my friends are survivors, all doing well. I know it's a kink in the road, not a disaster. I just need to believe myself lol. Just cos we can't see the whole picture doesn't mean it's not a beautiful one. :0) Keep me posted
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Re: Waiting for diagnosis after surgery

Juno, You are brilliant! You get me! You're so, so right about dealing with what I know and keeping my stress under control. I'm just not a poor me kinda person but this has really impacted me more than I can justify..... Or explain. My mum is a two-times cancer survivor, many of my friends are survivors, all doing well. I know it's a kink in the road, not a disaster. I just need to believe myself lol. Just cos we can't see the whole picture doesn't mean it's not a beautiful one. :0) Keep me posted
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Re: Waiting for diagnosis after surgery

Hi Evaboo, I'm in a similar situation, also waiting for results, so understand some of what you are going through. I had a fine needle biopsy on 21/7 on my neck as I had a cyst there that kept getting infected. I nearly fell out of the chair when the doctor told me a week later that it was cancer! (Lymphoma). A day later I saw another specialist who assured me it was treatable and curable, they just needed to do more tests before I could start treatment. I then had surgery on 30/7 (excision biopsy). There are over 30 kinds of Lymphoma and the results of this will tell me which one I have, and also what treatement I will be receiving. That was 12 days ago and I'm still waiting anxiously for the results. I feel a bit silly about being anxious waiting for the results. I've already been given the 'bad' news. I just feel as though I can't move on until I know exactly what it is I am dealing with. But back to you. I have found the telephone counselling staff at Cancer Council really helpful. Can you ring them and let them know there is a chance you may have cancer? They may be able to offer some practical advice. One thing that has helped me during the last few weeks of waiting has been keeping busy. I haven't felt well some of the time, but still try and plan something for each day, even small things like shopping, or getting my hair cut, or going for a walk or drive with my husband, cooking etc. I found nights have been the worst, I wake up at 3am and can't get back to sleep. I downloaded some meditation apps on my phone and listen to them - at least if I can't sleep I can relax a bit, I found focusing on my breathing really helpful. Every day that passes I think "well, I'm a day closer to finding out what's wrong", which means I'm a day closer to being well again :) Hope all works out well for you.
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Re: Waiting for diagnosis after surgery

Hi Sueblue, First off, thank you for taking the time to put finger to keyboard/screen to reassure me, I really appreciate your support. Secondly, and no less important, you too have my support. It's an awful limbo land were in isn't it. Twighlight zone! Like you, 3am seems to be wake up and worry hour, mine starts anything from midnight onwards but I'm a rubbish sleeper anyway lol. I love the idea of downloading some meditation apps.... Don't kno why I didn't think of it too. Will go and see what I can find but let me know if you've found a good one. I hope your results come through soon, do you have a date? I'll keep you in my thoughts as we both move forward to a good place. Evaboo
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Re: Waiting for diagnosis after surgery

Hi Sueblue, First off, thank you for taking the time to put finger to keyboard/screen to reassure me, I really appreciate your support. Secondly, and no less important, you too have my support. It's an awful limbo land were in isn't it. Twighlight zone! Like you, 3am seems to be wake up and worry hour, mine starts anything from midnight onwards but I'm a rubbish sleeper anyway lol. I love the idea of downloading some meditation apps.... Don't kno why I didn't think of it too. Will go and see what I can find but let me know if you've found a good one. I hope your results come through soon, do you have a date? I'll keep you in my thoughts as we both move forward to a good place. Evaboo
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