Ovarian cancer

A support group for anyone affected by ovarian cancer to come together, share experiences, and ask questions.

biopsy results, mdt meeting, terrified of whats next

Cassie78
Posted by

Hi Everyone

So as we are all so very aware, the waiting is unbearable, I found out this afternoon they will be discussing my biopsy results at the MDT meeting tomorrow. I know in my rational mind this is good as things are moving closer to a proper diagnosis and a treatment plan.  However, my irrational mind is telling me this is it and I am terrified of what the outcome is going to be. What stage it will be at, the grade of tumour. Can they do anything?
I know I have cancer of the ovary that has spread to the omentum but that’s pretty much it so far. 
I so want to know and get the treatment started but don’t want to hear again that it’s not good news.  I found out about the tumour on a routine scan for fertility treatment so it was completely out of the blue.  
Any words of experience to help keep me sane would be gratefully received.  
Best wishes to each and everyone of you here.
Cassie

cscared
Posted by

Hi Cassie

I know exactly how you feel. The waiting & worrying & imagining all sorts is unbearable. I've only recently started this journey too when a cyst was picked up on a scan for something unrelated. I was discussed at their MDT yesterday & saw the consultant that afternoon. I haven't had a biopsy so my situation is slightly different. I am still in the "lets wait & see" if it is cancer but given my ca125 was so high they are treating it as ovarian cancer. I was so worried yesterday about what they were going to tell me I was physically sick in the morning. However, I did feel better when they told me the plan for removing it because at least I felt we were getting somewhere, scared as I am about an operation!! Such a baby!! Sometimes it is easier to know what you're actually dealing with rather than all the things you're imagining in your head.

I wish I could tell you there was an easy way to deal with it but I haven't found it yet. The best advice is don't Google, however hard that is! (Wish I could take my own advice!).

Caryl

Cassie78
Posted by

Hi Caryl

Thanks for your reply and good to hear that you’re feeling a bit better about having a plan. I hope I feel that when I meet the consultant or oncologist - not sure who it’ll be yet but I know that chemo is first because of the spread of disease. 

My imagination is running wild and every little niggle or pain has me on edge.  I stopped googling after my bloods came back elevated and since then have been in a state of shock, disbelief and I am completely terrified. 

I wish you well for your operation.

Cassie

cscared
Posted by

I'm exactly the same. I had no symptoms at all & this was picked up accidentally on a scan for something else. No-one ever expects to hear they have cancer but it never entered my mind that day that's what would happen. The day before I went to see consultant I was convinced I now had loads of symptoms including bloating which I didn't have. I was sure they were going to tell me it had spread to my spleen - I was sure I had an enlarged spleen - and there was nothing they could do. It's horrible. I did feel better after meeting the gynae oncologist but it's a frightening journey. I do try & think about dealing with one day at a time but it's really hard. 

Let us know what your treatment plan is.

Take care x

Tsav
Posted by

Hi ladies.....all I can say is first of all please please stay off Google....before my diagnosis I became queen of Google and spent most my day on there frightening the life out of myself.....I had surgery on the 27th November,tah,bso, omentomy and lymph node assessment for a suspicious pelvic mass....operation was a success but unfortunately I have stage 2 ovarian cancer....good news it was contained and all removed but I need 6 sessions of chemo.....the waiting for results really is torture and I totally understand your fear and every emotion you are feeling....I have recovered so well from the surgery and you will suprise yourselves how you find strength....please feel free to ask me any questions and I will try and help any way I can....lots of love Tracey xxxx

Cassie78
Posted by

Hi Tracey

Thank you for replying, its very much appreciated.

Glad you’re op and you’re recovery are going well. I was expecting an op and chemo, hoping that it hadn’t spread but it had and the gynae oncologist said it wouldn’t be productive to operate and I would need chemo first. This threw me completely and waiting to get a biopsy and now results and then meet the oncologist is all very overwhelming. I heard on the 29/12/17 it’s cancer and has spread and I know it’s only been 2wks but it seems like an eternity. 

Knowing they’re discussing my case today pleases and terrifies me at the same time. I just want some treatment to start to try and get rid of this thing inside me. 

Thanks again, hugs, Cassie

shelleym123
Posted by

Hello cassie,

                       I just wanted to let you know just go with the flow and not to think it far ahead. I am at the end of my chemo just 1 more session to go and it's all looking very good for me, then it will be 3 monthly check ups and monitoring by the consultants. I never thought for 1 moment it was cancer because I pulled my side and was in great pain in the pelvic area, they did to internal scans and each time they told me they did not think it was cancer just an infection. That was in march last year in the may I had a Mir scan and that shown a tumor  after that I had a Ct scan and then in June I saw my consultant that's when I was told it was advance ovarian cancer and I needed an ultra radical operation within 3 weeks. So here I am in January and it looks like i'm cancer free but I will be told this at my next appointment in Feb. so you hang in there a take slow steps follow any advice and stay strong ......

                                                                               Shelley x

Cassie78
Posted by

Hi Shelley

I am so pleased for you to be finishing chemo and such a positive result from your treatment.  You give me such hope when it feels so dark at the moment. 

I heard from my Macmillan nurse today that I will meet with the oncologist next Friday. I expect I will get my full diagnosis and treatment plan then. Waiting again will be difficult but you’re right, one step at a time, one day at a time.  I can’t do anything but try to stay well and positive. It’s the positive I’m really struggling with, thanks to the imagination.  

Thank you for taking time to be so supportive. Everyone around me is being great but nobody understands quite what it’s like as they’ve not been through it. 

All the best for the final chemo and the appointment in Feb. 

Cassie xx

Tsav
Posted by

Hi Cassie.....a plan for you is nearly in place....all the waiting really is the worse,once you know what you are dealing with your inner strength kicks in and I promise you will start to get your head around it all....Its the worse feeling hearing that horrible word but you will be in good hands.....please message me if you ever need a chat,it really does help knowing somebody knows exactly how you're feeling xxx

Cassie78
Posted by

Thank you for your kindness and support. I will most likely take you up on a message or two. I suspect I will have many emotions this next week wait8ng to meet the professor. 

Thanks again, it really helps to hear from others who know xxx

Tsav
Posted by

Always here....please let me know how you get on xxx

shelleym123
Posted by

No need to thank me, I understand all your worries and fears. Don't be afraid to ask others for advice and don't be scared of showing your emotions to them around you because they will be feeling scared also and they will not know how to help you, here if you need to chat. X 

JayKay8
Posted by

Hi Cassie

It sounds as if you're doing really well given the waiting you're enduring and I'm sure it will be a little easier when you have a treatment plan.

I've found that a useful question to ask myself whenever I'm in difficult or stressful situations is "What is the best thing that I can be doing now/today/this afternoon?"  Only you are in a position to answer that for yourself, as it may be something rather mundane such as tidying the kitchen, getting the laundry done or making a phone call to someone, but for myself I did find it useful to read up a bit about ovarian cancer before I had a definitive diagnosis.

It may not be for you but, in case you would find it helpful, Ovarian Cancer Action and Target Ovarian Cancer have some good information on their websites.  In particular, if you are found to have the most common form of ovarian cancer then you are automatically eligible for genetic testing, although you may need to push for it as not all hospitals offer it.  It is useful to know the outcome of genetic testing as it can affect your treatment further down the line and eligibility for clinical trials, as well as enabling family members to take risk-reducing action if appropriate.

This may not be anywhere near the top of your priority list at the moment and that's fine, but I felt it could be helpful for you to know about it when the time seems right for you.

All good wishes

JayKay8

Cassie78
Posted by

Hi

Thank you for you reply.  I am doing ok some of the time and not at all ok at others. I am not ashamed to say that I cried like a baby in my mums arms this week, uncontrollable wailing. I wore myself out and fell asleep eventually. 

You’re advice is great - I keep telling myself to do the normal stuff that needs doing and i am getting there a bit more this week.  You saying what you have reinforces that I need to get on with things as normal as I can.  Take control of the things I can because I have no control over the disease.

I have looked at these sites and done some reading, I don’t want to be going in completely blind when I get the diagnosis.  Thank you for mentioning the genetic testing, I hadn’t thought of it as there is no other person in the family with breast or ovarian cancer that I know of. 

I hope you are keeping well.

Thank you again and best wishes

Cassie 

Designleo
Posted by

Got my scan on Monday at 2.40 terrified yes,crying yes,unable to eat yes,unable to concentrate yes,looking at my grandkids and crying definitely, had cysts for 2 years specialist refused to operate has got leidens factor v blood disorder plus other stuff.on 19 Dec ca125 was raised and now scan tomorrow to see how big if it's changed etc.hopefully it will be OK.

Good luck to allx

A.