Update: Hello ladies, thanks for all your replies... - My Ovacome

My Ovacome

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Update

Damelza profile image
9 Replies

Hello ladies, thanks for all your replies and all of your support throughout the last few weeks. I got my results today, and I have endometrioid adenicarcinoma . It is at stage 1C. I am shocked to be honest although I was told part of the situation last week, I am still shocked. The consultant was very nice but I guess very matter of fact. I suppose they see this every day and become immune to what this life changing disease means. She said that she would get in touch with the oncologist, and he would take it from there. She said I would loose my hair and somewhere along that conversation my brain left my body. I could hear her but there was no information going in, then on the way back home it kind of started to come back to me, and my husband did fill in some of the blanks. I told my kids about what was happening and that I would loose my hair, and my younger son said "hair or no hair, I love you anyway. That really upset me but then he said "at least you will look better than Voldemort". That made me laugh so hard. So now I have to wait to hear from the oncologist but luckily I can have treatment at my local hospital which is only 5 mins away in the car, rather than going 50 miles up to Galway. So I am happy about that. So that is my story so far, thanks for taking the time out to read this. I hope you are all keeping your spirits up.. Hugs to all

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Damelza profile image
Damelza
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9 Replies
HogwartsDK profile image
HogwartsDK

Hey Damelza!

I had exactly the same reaction when I heard my results I saw the consultant on front of me and his mouth was moving but I didn't hear a thing!!! Over the next few days loads of questions will pop into your head so write them down and you can ask the Onc! I think we live in the same town so if you want to ask any questions feel free to send me PM! I am guessing you will have the same onc and I had my treatment in the same hospital! They are a great team in the Chemo ward up there and will make you feel very welcome if that's possible in a Chemo ward!!!

As I said send me a message if you want to ask any questions but you will find after you get over the initial shock you will start to be glad that you now have a plan and you will want to get on with it!!

Dx

Damelza profile image
Damelza in reply toHogwartsDK

Thanks Hogwarts, my mind is in a puddle at the moment but I will take you up on that offer of pm you, if you don't mind. I think not knowing is the worst thing in the world is not knowing which way your life will sway. I can take the diagnosis on the chin ( not today, maybe not tomorrow) but I deal with things better when I know about it. Thanks again

HogwartsDK profile image
HogwartsDK in reply toDamelza

Just an option if you want to avail of it! I had someone local who was going through exactly the same as me she was 6 months in when I met her and I found her advice and support invaluable but no pressure just know that the option is there!

I know exactly how you feel and I remember it was horrible! As Bonnie said we are lucky to have been diagnosed at an early stage (I too was Stage 1) but while eventually you will appreciate that now it's all just so raw and you have to get through that right now!

Mind yourself and let people take care of you! Don't be afraid to let the tears flow either I didn't think there was that many tears in me when I first found out and I always felt better after a good cry! I still do!!!

ONWARDS AND UPWARDS!!!

Dx

Bonnie11 profile image
Bonnie11

Hi Damelza...I read with interest your diagnosis . I am also 1c Endometrioid and you will find its not one of the common diagnosis '. It's one of the sub sets of epitheal ovca. In my case I had a cyst rupture before surgery ( over Christmas ) so had to wait 10 days for surgery. I have done extensive research on Endometrioid (and trust me it's hard to find information !) but be assured it's prognosis is excellent with good completion surgery and chemo. So once you adjust to the diagnosis you pull up your socks and get through the chemo. Make sure you get lots of help in place ...hopefully this will be once off and you might surprise your self with how well you will cope.. Keep reminding yourself it could have been a lot worse and you are lucky to have been diagnosed so early..

Damelza profile image
Damelza in reply toBonnie11

Thanks Bonnie, where are you on the road to recovery, did you have chemo. Yes I do consider myself lucky. It's nice to be able to communicate with someone that has the same diagnosis. Thanks again 😊

Bonnie11 profile image
Bonnie11

Well I am six months down the road but have ended up being a real challenge to my medical team as the chemo didn't suit me. I had a rare reaction (so don't worry it will happen to you ) and 8 weeks after the first dose they are considering rechallenging me with carboplatin. I feel great ,,full of energy ,,,walked 12k today in glendalough and revelled in what a wonderful day it was! However every week I return to get my bloods done and wonder am I ready to resume treatment and 8 times " not ready yet" has been the response......time is of the essence in my case but at this stage I am rolling with the punches as I can't control the blood results. I have read some interesting scientific papers on radiotherapy which may be an option for me. Anyway feel free to message me at any time . This journey is an absolute rollarcoaster but I am getting better at hanging in there. Interestingly enough I lost my hair after the first and only dose of chemo but it didn't knock a feather off me. I got an amazing wig ...exact colour and even better cut..than my own. I went to visit my mum last week in Galway and she never noticed nor did I tell her. My own hair is growing back now but I really like my wig😊

HI Damelza, sorry you got this diagnosis. It is mind spinning to be honest. Although I was the one who watched the porter bringing results back to the ward in the evening and I knew something was amiss and I put the Reg on the spot and asked him. They have to tell you if you ask. I then saw the gynae surgeon a few weeks later and I knew what he was going to say so that actually helped me cope. I just had to do what I had to do. You are obviously on Carbo Taxol and as D said it is doable, maybe a few alterations with anti sick here and there etc. It is good to speak with some one who has been through this. I am also a member of Ovacare like D and there are patient days in Cork and Dublin. There should be a patient day in Dublin in Autumn. If there is a Cancer Support Group in Galway such as Arc House or nearer to you, please do avail of it. Now may not be the time but they have a confidential service along with light reflexology and counselling. I know this is very early days and you have a lot to digest but I found it invaluable to speak outside family and friends to those who understand what you are feeling. Most of the Cancer support groups have gone through treatment or have had family who have gone through treatment and they are trained listeners and understand where we are coming from. I am glad you had someone with you because as patients we pick up the bad bits and the men focus on the good for some reason. To end on a positive vibe, I am diagnosed ten years this July and I am doing okay. I had recurrence but I cherish being able to meet my little grandson five years ago and also recently saw my son getting married. If anything occurs to you that you want to ask us, please do come on and ask. There are fantastic people on here who help and support each other,

Bonnie11 profile image
Bonnie11

What a lovely encouraging post Suzuki .

Begster profile image
Begster

I had exactly the same diagnosis back in 2013 I only had carbo as my chemo and have been ned for 2.5 years now and I didn't loose my hair xxxx

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