Womb (uterus) cancer

A place for people affected by womb cancer (also known as uterus or endometrial cancer) to support one another, ask questions, and share their experiences.

Scared and worried

POG19
Posted by
Hi all, just looking for some support. My mum had been having tests, a scan and biopsy for vaginal bleeding.  Last Wednesday and a week after biopsy she had an appointment to go and see her GP. She was told that they had found some type of cancer but they pathology were still looking at her results. My mum was so shocked at the news and said that she didn't take much in after that but the doctor did mentions grade 1. 
The next day my mum got a letter to go and see a gynaecologist which is for next Tuesday under the two week referral. My mum was due to go and see her doctor again today bit now she has this appointment at the hospital this has been cancelled. 
I have gone from being calm and waiting to see what happens next week to being hysterical, feeling sick and feeling like my world is about to end. My sister has been the same. My mum is obviously worried but said that until next week there is nothing she can do. My mum had blood tests as well as the biopsy that came back clear. 
i think it is the word cancer that just scares and panics you all so much. 
My mum is 62, healthy, not overweight, never smoked, hardly drinks so is healthy. 
We are all due to go on holiday too in August and now just feel that life come to a standstill. 
Trying to carry on at work and look after my family but its a struggle at the moment. 
Any advise of support would be great at the moment. 
Little lamb
Posted by

Hi POG19 and welcome . This is the site that nobody really wants to be on but it is very supportive and helpful. There are ladies of all ages on here, all shapes and sizes and at all different stages in our journeys and we are a friendly bunch all waiting to help you in whatever way we can. All our experiences are different and if one of us cannot help you then another one will. There is very little that we as a group have not experienced in some form of another and let me assure you that there is no question that is too stupid or too personal to ask. We tell it like it is. If we cannot answer there is the excellent Macmillan team, and nurses you can ask but the replies take a couple of days longer to receive. And our champions who can help and redirect you. .gbear, arla and daloni. They have a big green logo at the end of their posts as an indicator. Cancer..the word nobody wants to hear..the scary monster that you hear happening to other people but never believe will hit your family and friends. First of all i want to reassure you that a lot of research has been done into this disease and treatments have come on in leaps and bounds thanks to trials and in most cases it no longer carries the death sentence it did many years ago. Womb cancer in particular is very treatable nowadays with a high majority of cases being cured by surgery alone. I am not a medic but they say that if you had to get cancer womb cancer is the better one to have if there is such a thing as it usually is contained inside the uterus. That said the journey is never easy, there will be words and phrases bandied about all over the place that you have never heard of, various tests you need to have to confirm diagnosis and different people you will meet that will form your team. They are all on your side so feel free to ask questions from them. One important rule we have here is not to Google things because a lot of information is out of date, incorrect and it always paints a darker side to things and scares you. If you really cannot do this then please only use reputable sites such as macmillan, the eve appeal, cancer research or NHS choices. Far better to ask from somebody who has gone through it because you get an honest answer. If you go into the site macmillan.be you can order some booklets ..the cancer guide is a good one to start with and there is one that deals with endometrial cancer but your mum may be given the second one if she has been diagnosed with cancer. It is always good to have somebody with you at meetings to take notes and listen for you because it can be scary and your mind shuts down as a coping mechanism. Also as time is limited it is better to take a list of questions you want to ask written down because I can guarantee you will think of things to ask when the meeting is over as your brain won't function fully in the meeting. They don't all have to be asked at once mind you. When you are past or in the menopause period and you experience a vaginal bleed they do normally have to alert you to the possibility of cancer although this is usually confirmed by hysteroscopy ,biopsy, and MIR or CT scans and abdominal/trans vaginal scans. The bleed could be due to a host of other things like polyps,fibroids or a thickened lining and not necessarily cancer but due to the age we live in and people sueing left, right and centre they have to mention it for their own protection.when all the results of the tests are in they will be examined by a multi disciplinary team( MDT) before a decision is made and a treatment plan put in place for your mum. She will then be called in to see the consultant. Stage 1 is the earliest type of cancer and can usually be cured by surgery alone. Grade 1 is slow growing cancer. Most womb cancers are slow growing so please don't worry that it is suddenly going to take off and grow everywhere. I know this is a very worrying time for you all and waiting is the worst bit but we are all here to wait with you and hold your hands throughout your journey. You and your sister are doing a great job looking after your mum and the family..a very tough and important job. Through this journey you are both going to have to try to remain strong and be your mum's eyes and ears. A big ask but I'm sure you can both do it and we are all here to help you. You've got this ok. Remember that. And try not to be frightened..It may be nothing and your mum may need tablets or minor surgery only. If it does turn out that it is cancer it's got a pretty good cure date . If she needs a hysterectomy then come back here because we have loads of tips and advice that can help. You and your sister are not alone darling. Please try not to worry because if you do you will only make yourselves I'll and mum needs you at the moment and also it means that horrible cancer has won by consuming you in its trip as well as mum..and it's not going to! God bless sweethearts and remember we are all on your side. Love lamb.xx

Little lamb
Posted by

You know what..I forgot the most important part of your post..your holiday! Mention that you are due to go away in August because usually they are very accommodating and tailor treatment around vacations taking the view that a holiday is usually better for the patient and family in the long run as it provides relaxation and rest and takes your mind off things.(hope you aren't climbing mountains having said that!). It also provides a focus and as womb cancer is normally slow growing a delay of a couple of weeks will not usually affect it. They will most likely recommend that you go in any case as a boost for you all. So enjoy it with your mum and have a fabulous time.Love lamb.xx

POG19
Posted by

LittleLamb Thank you so much for replying. I have been on this site since last week but too scared to join as then it feels real,  thank you for all your advise,. I feel really awful as I didn't mention my poor dad too! My mum also his full support and he has a very calming influence on us all. Since writing this post this morning, my mum has received another letter for an MRI the day after her appointment, Things are moving quickly, this also scared me but by looking on here it is normal and they get a better idea of surgery.

I think my mind has jumped way ahead and I need to calm down and not panic. All we've heard is the word Cancer and gone into melt down.

You are so right, you hear it happening to other families and never imagine it could be your family.

I am so worried about my mums appointment next week and what might be said but I suppose its something we need to do to get rid of this! My dad will be with her and we will write down some questions that we want to ask as my mum wouldn't ask anything.

You have really cheered me up with your words and support, I now feel a bit more calm inside. We have been trying to get on with things as normal but its always there lurking.

Good advise about the holiday, I didn't even think that you could delay it for a holiday, My mum has said that me and my family are to go ahead but until I know what's happening, I cant think that far ahead. My mum may even still want the holiday so may be a good idea!

Thank you again so much and really glad I wrote down my thoughts and you have really helped me feel not alone.

NannyAnny
Posted by

Hi POG,

Your first brush with cancer in a loved one is a very scarey experience. I nursed my husband through throat cancer 12 years ago, and my youngest daughter with breast cancer 6 years ago. When it came to my turn two years ago with womb cancer I felt almost blasé!!! I knew a lot of the terminology and possible treatments and side effects!! I dreaded chemotherapy having watched my daughter suffer, but fortunately I only needed the hysterectomy. The operation itself was nowhere near as bad as I had expected. I had keyhole surgery, which was marvellous.

When my husband was diagnosed we had a holiday booked to the Black Forest in Germany. After all the tests they let us go and organised his operation for the day after we got back!!! I enjoyed that holiday, and persuaded myself we had left the silly sore throat in England!! There then followed a rough 3 years with no chance of a holiday, so I was more than ever glad that we got that one.

I was 72 when I had my operation. I had not been near a hospital for 40 years and things had changed so much(for the better).

All the best to your mum and the family. xxx

Fairycake
Posted by

Hi  a very warm welcome from me too. I know you'd much rather not be here but it's a safe place to ask questions, rant, cry and meet lots of ladies who understand where you and your Mum are right now

Little lamb and NannyAnny have given you lots of great advice. It really can feel like cancer takes over your whole life, whether you're the patient or the carer. There's a sense in which that's true - your whole works as you know it is suddenly turned upside down and all your assumptions about life, your hopes and dreams for the future are called into question. I just wanted to reassure you that whilst it feels this way now, things do improve with time. I found that once I'd met the team and learned what the treatment plan was, I felt more in control. I learned to trust the team and I was very well looked after. I was encouraged by my specialist nurse to try to do the things I'd normally do, especially during the run up to the op. So I went to work, met family and friends and got on with things as best I could. It wasn't easy but it did help and planning in some treats meant I had things to look forward to which then became talking points during my recovery. I was determined that cancer wasn't going to define me and my family and friends did everything they could to help me keep doing the things that were important to me. Having some normality helped me cope with major surgery, then chemo and radiotherapy. Focus on getting through one day at a time and try to do things with and for your Mum that you'll both enjoy. Take things a step at a time and try not to second guess anything - hard, I know, but worth making the effort to do.

You say your Mum is generally fit and healthy and that will benefit her during recovery. I think it helps to have a pisitive attitude too, not in a Pollyanna sort of way as that wouldn't be realistic, but positive in the sense of acknowledging that the good things in your lives are still there to be enjoyed. Your Mum is right - worrying doesn't change anything, it just ribs us of the joy of this day. That doesn't mean it'll be easy, it won't. There'll be rubbish days, days when you cry and rant and despair, but there'll also be times when you laugh, smile and feel joy in the things you do together. There are so many encouraging and inspiring stories on this forum - I hope you'll fiind lots of encouragement and comfort here.

Sending lots of good wishes to you and your Mum x

POG19
Posted by

Thank you so much NannyAnny, wow you have been through it, so sorry to hear what you have been through, i have been looking at this site all week and i am so new to all this, something i never thought i would have to do but sure no one wants to think they will be one day.  Feeling positive reading all the stories and getting to know what to expect even though i still cant believe its all happening.  The hardest thing is trying to act normal for my children and  trying to focus on work, luckily my manager is really understanding so that's helped. Its only been a week and feel likes its been a long time already,.

Good that you managed to get your holiday and think about something else whilst there. I think i am in a state of panic and want to wrap my mum in cotton wool, but she's still going to work, getting her hair done tomorrow and carrying on better than i could ever have imagined 

Thank you so much for taking the time to reply and for your well wishes. 

POG19
Posted by

Hi Fairycake and thank you for your reply. I feel exactly like that, the life i know is gone and i am consumed with all this worry and anxiety and the unknown is horrible. In the last week since we have known we've had a nice barbecue, been to my daughters school fair and been at an assembly with my mum so trying to keep things as normal as possible. Thank you for our tips about how you coped along your journey and its reassuring to know that i won't always feel like this. I am dreading next week with the scan and first appointment but need to look at this positively that this is the first step to getting this sorted out. My mum went to the doctors soon after bleeding so i am hoping that this means she is in a good position at the moment. 

You a right, the good things are still there, that all hasn't changed overnight we've just got a blip on the way, thats what i need to think. I have been second guessing all week and this doesn't help at all, you ladies have been there and have got through it,  i need to learn from your advice. So glad i took the courage to write and for the people who have replied, can really help when you are feeling filled with worry. 

Thank you all so much x x x

oldady
Posted by

HI ,

After I was diagnosed I think I behaved in much the same way as your mum.   I was older, and at 76 years old, I didn't go out to work but generally tried to carry on as usual.   Yes, I was worried and scared but I felt I was in pretty good hands at the hospital and just needed to go along with things, get ready for the operation and worry about any further treatment later on if I had to,  I felt it was almost easier for me than for my family who were helplessly looking on.   

Looking back I think I almost convinced myself it was happening to someone else!  

As you can see from my signature that was over 4 years ago and although I did need some radiotherapy afterwards I am still going strong and pretty fit (for my age!)    I'm sure your mum will be just the same in the future . Her good health now will stand her in good stead. 

XXXX

Anne

(Class of 2015!)

NannyAnny
Posted by

Hi POG,

Thinking about your children. I think you are wise to put a positive slant on this. As a child, I can't remember anyone surviving cancer, but that is not the case these days. My own grand child was 2 years old at the time I had my operation. I decided to tell her I had an operation, simply because I didn't want her bounding around near me!! When she asked to have a look (still covered in iodine) I was dubious, thinking it might scare her. She was so funny as it didn't bother her at all, and she checked it each week afterwards!!! It was some months later when the scars were barely visible she declared 'Oh, that's much better', and she hasn't bothered since!!!

I think children often accept things better than grown ups.  xxxx

POG19
Posted by

Hi oldady, thank you for your reply, I think that's how mum feels at the moment that its not happening to her and that she is coping too well with it all, If I get upset, she says don't worry there no point worrying about it! I do feel that the hospital have moved well with giving her a scan date so least things are moving quickly which I know doesn't seem the case for some on this group. I have been so worked up thinking about her appointment next week, now realising that we will need to wait for her scan results, this waiting is unbearable but I know that it needs to be done. I am glad you recovered well and so nice to see so many people doing well after their surgery. Thank you for your kind words.

POG19
Posted by

HI Nannyanny,that's so sweet bless! mine are 13 and 11, I have been honest with them. They were both upset when I told them but they are defiantly coping better than me! They see my mum all the time as we live close and they have been fine when they see her I have told them that this is common and she will need an operation and then hopefully all will be ok. xxx