Hi everyone, first of all I just want to say how grateful I am for all of your comments on my previous post, you were all so kind and really put my mind at ease.
So today I had my first appointment with the consultant. He didn't have my MRI results for some reason so had to get them from the GP which meant waiting around but he finally got them through.
The tumour looks to be 'sinister' as he put it but he wants to be sure so is taking it to the multidisciplinary team on Thursday. My womb is also swollen but he says that doesn't look to be related to the tumour. I will be seeing him again next week to discuss the plan of action.
Even though I thought I had fully prepared myself for this it has come as a bit of a shock and I don't really know what to think. He hasn't properly diagnosed me or anything and I assume that won't happen until it's removed, my head is a bit all over the place and I have so many questions I wish I'd asked him while I was there. My mind went a bit blank.
Anyway, thank you so much for all being so lovely to me through all of this, Emma xxx
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I don't understand what he has to ask the team about - surely it will have to be removed? Maybe it's because you're young but I'd have thought they need to do a laparasocopy as a minimum......
Yes I think it's because I'm only 29 and have already lost my other ovary. However, obviously if it's cancerous I'd much rather them get rid of it sooner rather than later. I think he was a bit rushed with not having chance to look at the scan before the appointment. He did say it will need removing it's just whether or not they will have to do a full hysterectomy, take the ovary or maybe even just the tumour.
Yes that must be it. I suppose it gives you some time to think about how you feel if they want to do a hysterectomy at the same time...
The waiting is the worst part - if I were you I'd concentrate on 'getting ahead' at home for whatever op they decide to do. Maybe get some food in, or the freezer stocked - stuff like that? Is there anyone who can help out with the children just in case?
Hi I'm sorry you find yourself in this situation at such a young age. I know you are in shock at the moment but you have a meeting next week so probably the best thing is to write every question you have down the min it occurs to you, regardless of how trivial it might seem at the time. Stay off Google as well because you don't know what athe situation is at the moment and believe me you can read so much on there that will throw you deeper into shock unnecessarily. Try (easier said than done) not to worry, worrying wont change a thing but will make your days and nights drag. Try to focus on the good things in your life, oh and making that list of questions. Big hug. Kathy xx
Thank you Kathy, that is good advice I will definitely write down a list, I thought of loads of things I should have asked after leaving the appointment 🙈 I am also trying to stay away from Google, I did have a quick search but to be honest I couldn't really find all that much anyway. Best wishes, Emma xx
Google is very outdated; sometimes you start reading and find you are reading stuff dated even 5 years and much has changed. It is beneficial to have the "team" look at it and decide upon the best course of action. I like to to get everything done before surgery or chemo treatments. I clean the house, get food ready, etc. It will keep you busy although I imagine your chldren do too.
Hi Emma I am really sorry to read your post ❤️ I am sure you do have lots of questions- write them down to ask next time. Going through MDT is standard practice and is designed to ensure that your case is dealt with by all relevant specialists and the best course of action is recommended straight away.
It’s a big shock- so make sure you have the time and support to help you xx
Ps you can ask us whatever you want- no matter how silly or personal-someone will have experience they can share.
Thank you Lyndy it's great to know I have somewhere to come where everyone knows what they are talking about from first hand experience 🙂 it's definitely been a bad day, I'm going to try and get an early night and hopefully everything will seem better in the morning xxx
Hi Emma, thinking of you at this worrying time. It's so hard waiting for the next appt, even a week feels like a year- we have had it all with my mum, but hopefully you will have some answers soon. It's definitely good to write down your questions, even having a notebook and pen by your bed as quite often these pop up at silly o'clock in the morning. Take care and best wishes, Vickie x
That's a good idea actually thank you Vickie! I have been thinking lots about it all on a night when I can't sleep so I will put a little notebook there so I can joy stuff down. Hope you and your mum are doing ok xxxx
I hope it helps Emma x I hope you hear the outcome of your MDT soon then you know what you're facing. It's some times the not knowing which can be the worst! Mum's starting her chemo next week, it feels like we've been waiting forever (and 3 operations later) to get to this point! But finally we are feeling like we are doing something positive to help to fight against this horrible disease. Take care Emma xx
Hi Emma it’s such a frustrating time- I’m not surprised you’re feeling like this. One thing I’m learning is that every appointment where I think I’ll find out some information- I come away with more questions than answers. Arm yourself with Questions- I plan to next time. I think I’m starting to associate the hospital with trauma after my miscarriage and all the appointments; and I get waves of panic and burst into tears! Not helpful. So I’m definitely writing things down next time. We are all here for you xx.
And you. We all are hoping very much that you are ok! Xxxx
Hello Emma - Did you have a relative/friend with you? If not try and arrange someone for your next appointment. Your appointment sounds very similar to my early consultations. I ended up wondering why I saw a gynaecological oncologist just for him to tell me my "case" was going to an MDT. After that I saw him again only to tell me he had referred me to a surgeon - seemed such a waste of time. By your next appointment your MRI will have been properly examined by the MDT team and next time you see him he will let you Know the findings. Waiting for appointments is the worse thing in the world but you are in good hands and the MDT will come up with your best possible treatment plan, we are all here for you, Good Luck xx
Lyn that sounds exactly what I’ve experienced too. I actually started to feel like there’s a conspiracy this week, that the ‘team’ (2 nurses, I medical student, Gynaecologist) all knew something I didn’t its was surreal. I’m supposed to be speaking to the nurse today after the M.D.T. But I’m expecting to hear just enough to worry me further. 😕 it’s hard to endure this period of uncertainty.
Yes once I knew the "plan" was agreed I felt much better, the MDT said I needed surgery so I had a consultation with my Gynaecological surgeon, who was great and took lots of time to explain everything.
Yes perfect sense this is very scary stuff we are dealing with. I spent a lot of time at the beginning wondering if they had made a mistake, I had already had a cervical cancer scare at the age of 28, turned out to be pre-cancerous cells. You will process the information as and when you can cope with the diagnosis, I eventually admitted that they weren't wrong and got on with treatment, we are all different and you will find your unique coping system. Take Care Lyn xx
I didn't have anyone with me, I try and deal with these things on my own but I will probably have to relent and accept some support! I think the MDT is today so I'm hoping to hear something tonight with regards to my appointment next week. Such a stressful time! I know it's been the same for everyone here too, I hate to think of people feeling this way it's a horrible feeling. Lots of love, Emma xxx
Reading all the comments I was glad to read your Gynaecological surgeon took time to explain things. Do you have a surgery date? You will have to make more questions now,for each step, to be prepared. When will you know if you are getting a full hysterectomy--once they are inside or prior? You don't have to answer--its also good to take a break from thinking about this 24/7 if you can! Hugs coming your way. oxox Judy
I honestly don't know yet, I think I'll find all this out at my next appointment which will hopefully be on Tuesday. I'm trying to take my mind off things, the kids are keeping me busy as usual but I did finally have a bit of a cry about it yesterday. I'm not really a crier and my other half has never seen me cry before 🙈 he didn't quite know what to do! Anyway I feel a bit better for that. Hope you are doing ok xxx
A good cry can really help! I tend to do them alone---as my husbands get so upset when he thinks I am unhappy, especially during this journey. Another possible suggestion--sometimes they actually like you to tell them how you need them to act--or be--while you go through this. It's OK for you to be the needy one sometimes
Yep I totally had to tell him what to do, he came back from work yesterday (he works offshore) didn't ask about the appointment (we had messaged about it though) didn't ask me how I was feeling and proceeded to moan about me leaving something out in the garden 🤦 so it really upset me, I cried and he then got upset, apologised and said he's really worried and feels helpless and was trying to keep things as normal as possible and to keep his worry from me in case it worried me more! I had to tell him that him ignoring it was making me feel like he didn't care so he apologised and promised to not be like that anymore. I hate to say it but it's a typical man response 😂
Thank you for your support, I do feel better today after my good cry last night! Felt like it had been building for a while xxx
I’ve cried buckets and not been brave at all. Think you’ve done so well to hold it in until now.
I was thinking about you today because it feels like your diagnosis/ results are talking a very long time to be confirmed. From what I remember your MRI was quite a long time before mine. I now (unofficially) have results and an operation date. I know there are so many variables in this but it is undoubtedly the waiting which is so very hard. I know it doesn’t ultimately change the diagnosis but it does affect your mental health. I hope you get better clarity on Tuesday. X
13th of Feb my MRI was! I think things would have moved much faster if the gynaecologist had access to the results as soon as they were ready, I think he probably should have chased them up really considering how high my ca125 is.
I’m ok - still not sleeping and still very anxious despite having had some reassuring news.
Not looking forward to the operation and still concerned about being put through so quickly for surgery.
I had my MRI on 24th Feb and had some results two days later. I had to chase them but finally got my consultant’s secretary to read them out to me. I’m supposed to receive a letter but haven’t got it yet.
I’m glad your partner is back - even though he’s finding it hard, it must be good to have some moral support.
I’m really hoping that your next appointment is more informative and you have some better news.
You’ve been given good suggestions as to how to move forward. I wanted to reiterate the importance of having a supportive person with you during your appointments , especially the ones deciding how to proceed with treatment. There’s so much to take on board, emotions as well as information, that 2 people listening can be so helpful. My friend was good about reminding me what questions I wanted to ask when I went blank. We would review the info after, which would help me clarify things in case questions still existed.
Take good care of yourself, and sending you big hugs,
Hi Christine I think I'll try and take someone with me next week, I tend to like dealing with stuff alone but I think this time I will have to take someone with me, like you say it's hard to remember everything when you're alone. Thank you for your reply 🙂 xxx
Hi Emma,
I’m sorry to hear that you’ve been given more worrying news.
I’m not sure that I can offer any more advice other than I can completely understand how scared you are.
I would not have got through any of my appointments without my mum who has been there throughout and actually done the majority of the chasing of results for me as I know that I wouldn’t have had the strength to do it.
I was definitely in the position of wanting to know but at the same time not wanting my results.
Weirdly I have a very hard time believing anything positive that is said to me and no problem at all with believing the bad stuff.
It must be a coping mechanism.
Clearly, I’m not a medical professional but it does seem odd that he hadn’t looked at your report prior to the appointment?
I would definitely want more answers than what you seem to have been given so far.
Yes I was very frustrated when I realised he didn't have my results and had to go and get them emailed from the GP while I waited. That was the whole reason for the appointment! He was very apologetic to be fair. I'm going to ring tomorrow and make sure they have an appointment for me on Tuesday.
I hope you are doing ok now, thanks for your reply 🙂 xxx
Well done, Emma and now you're well on the way and learning as you go along. You'll also find that you miss hearing some things that are said. Taking someone with you is key to this.
Good the follow up meeting is fairly soon but it will feel like ages as you'll want to get on with it but they need time to work for you in the background.
Good luck with everything and just ask any questions you may have as we're here for you! Gina xx
Thanks Gina, it really is such a comfort to know you are all here with your wisdom and experience! It's all a bit of a blur at the minute so I think I definitely could do with someone coming with me next time. I have so many questions I wish I'd asked! But hopefully next time I'll have lots more information. Thanks for your reply 🙂 xxxx
We all feel for you and recognise the stage you are at. You'll find most people are very willing to offer their support and it adds so much to what you'll be experiencing. Don't be afraid to ask for help even though it might feel strange at first. Keep posting too!!
We all have that blank face and brain when given news. I write things down on my phone as I think of them so I dont forget to ask certain things. Hope things go well. Let us know how you're doing..
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