I am a bit confused

Hello ladies, I hope that you are all well and in good form. I was given this diagnosis of endometrial adenocarcinoma stage 1C. I was just wondering what exactly is 1C ?. Is it stage 1 grade 3. This question has just bubbled up in my mind in the last few hours believe it or not.. Oh boy, my concentration and energy are non existant these days.. I brought my daughter shopping this morning, then i went home and made dinner, only to find out that I had to go into town again and get the boys some bits for their school tour tomorrow. Then I had an e-mail from a tour operator asking me did I need help with my booking!! Oh God... I booked this holiday on a whim on Saturday morning and thinking it was all paid for, but when I looked at my online banking this morning only 1/3 was paid for.. I have no way of contacting them now until morning. My husband is on my back saying I have lost us a load of money. I swear I am screaming inside... What is wrong with me at all. I feel so bad, I just want to curl up and die.. Sorry for ranting ladies but I have nobody else to talk to.

45 Replies

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  • Hey Damelza,

    Hope you are OK? The link below will explain the stages and grades of OC. Stage is about the spread of the disease and grade is about the type of cancer cell it is!

    cancerresearchuk.org/about-...

    Hope this helps and that you feel better soon!

    Dx

  • Oh thanks Hogwarts.. I am just feeling sorry for myself.. I hope you are well

  • Perfectly understandable to feel sorry for yourself I had plenty of days like that when I was waiting for dates etc! I still have one or two but they are not so frequent now! I am good, almost as good as I ever was! Little bit tired and some aches and pains but nothing too bad!

    Hope you get your plan of action soon!

    Dx

  • Hi sounds like a tough day....

    In answer to your question,

    Stage IC: The tumour is limited to one or both ovaries or fallopian tubes, with any of the following:

    Stage IC1:The ovary capsule is ruptured (no longer intact) as a result of the surgery.

    Stage IC2: The ovary capsule ruptured before surgery, or there is a detectable tumour on the ovary or fallopian tube surface.

    Stage IC3: Cancerous cells are detected in the fluid taken from the abdomen.

    - stage 1cs used to be grouped together but were subdivided recently, so my 1c was because it was confined to one ovary but the capsule ruptured during surgery and is now classed as 1c1!

    The grade is to do with the behaviour of the cancer cells, grade1s are slower growing/dividing.

    -so as mine were slow growing, mine were classed as grade 1, which means I am classed stage1c1, grade 1.

    There are also different sub-types of OVCA such as Serus, clear cell, mucinous etc and you should be told the type as well.

    So in total, mine was a 'mucinous tumour, stage 1c1, grade 1'

    Hope this helps a little.... Sx

  • thank you Sun, Yes i think I am 1C1 because gyne consultant told me it ruptured during surgery. I am waiting to see the oncologist and i am hoping to get more information from him

  • Take a deep breath. This forum is for ovarian cancer, I'm assuming you have cancer of the womb, which is different. But the good news is that your cancer has been caught at an early stage. I don't know the specifics, but usually for early stage cancers the prognosis is very good.

    It sounds like you're in shock. I'm assuming you don't want to go on this holiday? If so, first of all get legal advice or failing that, talk to Citizens' Advice. If you paid by credit card you might have the option to cancel. Once you know your rights, talk to the tour operator, or better still, write/email them. (Writing is preferable to talking when there's a possible dispute.) Your GP could possibly help, since your shock could amount to a psychiatric illness and if it does then legally the tour operator will have to give you your money back. I know this sounds awful, but a friend who is a GP used this to help someone in a similar situation. Just about everything is a psychiatric illness these days.

    I'm sorry that your husband isn't being sympathetic. He's probably in shock too. It's frightening how easy it is to spend thousands on pounds online with a couple of clicks.

    I can't wave a magic wand. I can only suggest you have a glass of wine and watch a distracting TV programme or read a book. You can solve anything tonight but if you manage to get some rest you will feel stronger and better in the morning.

    We've all been there. The early days are the toughest, but you'll pull thru'. Best, Vx

  • Great advice V! Just to add that if it is womb cancer there is a new HealthUnlocked site called Ask Eve and run by The Eve Appeal which is for all Gyny Cancers. It's only recently started but they also have a CNS who is regularly available on the site, Sx

  • Thank you!

  • thanks Viper, I am not going to bed tonight because I wont sleep with worry. I will call the tour operators tomorrow to see if I can rescue this situation.I do have ovarian cancer. Thanks again

  • Of course you are up in a heap after getting diagnosis, you booked the holiday with the best of intentions. All will work out, try and rest tonight, men get that way when things go wrong but if they do anything, it is all quietened down. Maybe your husband is stresssed with your illness. You can come on here and get it off your mind anytime you like. I hope you will have success in sorting this error tomorrow, it might be their fault not yours. You dont know until you contact them. So go and make yourself a cuppa and relax, you can do anything tonight. I am getting good at passing things off and I was the worlds worst. While hubby was complaining about the light in the fridge going out, I just went out and stuck to my plan for the afternoon. The Fridge is fine, the bulb is gone. Before I would have said, I need to sort it now but I have talked myself out of that behaviour.

  • thanks Suzuki, maybe my husband is stressed about the cancer, the thing that is bothering him is the fact that the consultant said i would loose all my hair. Then a woman told him that she had ovarian cancer and she didnt loose her hair. I told him we may have the same illness but a different type.

  • Hi

    Just a comment, that if you do have to have chemo, it does depend on the type of chemo that you as to wether you loose your hair or not. Ive lost it twice but also had a period with keeping the hair too...

    all the best

    Dawn xx

  • Also just bear in mind that wigs aren't the only way to go...I'm currently addicted to 'wrapping' my hair, using different scarves.....have a look at wrapunzel, an American site for ladies who wrap hair for lots of reasons including medical, there's loads of you tube videos and I've become a bit OCD about matching scarves to outfit.....my class at school have no idea what I'm going to turn up in!

    Dawn

  • gynae talked about carbo/taxol

  • sorry, but that is one to loose your hair with. Had it twice now lost more this time around than first time, ie eyebrows and eyelashes as well......not to scare you just forewarn you

  • thanks Baxbird, that is something i need to know.

  • My stage was 1C even though it was confined to one ovary, this is because the cyst was attached to the outside of the ovary. My diagnosis was grade 1 serous cells and grade 3 clear cell.

    LA

  • thanks Lilly-Anne, I need more information as time goes by.

  • Hi Demelza,do you mean endometrial or endometrioid adenocarcinoma ? I note one of your your earlier post said endometrioid which definitely is ovarian cancer and not womb cancer, 1c is the stage, ask consultant for the grade if it's grade1 which is low grade, you may not need chemo. Wishing you all the best xx

  • Yes you are correct in saying endometroid adenocarcinoma. You see what I mean. I dont even know my diagnosis...lol

  • Yours is the same as mine. X

  • I hope you are keeping well!!

  • Yes thank you, i'am 5 years out now.wishing you all the best with your treatment.Don't worry about hair loss its only for a very short time,and it grows so very quickly back..xx

  • Go easy on yourself. It sounds like you are taking on far too much. You have had major surgery, which has a really traumatic effect on the body. Trying to act as if nothing has happened will just make everyone around you think that you are coping.

    I had my op 7 weeks ago and am nowhere near feeling in control. Don't scream inside, scream outside if it helps!

  • Thanks 27, yes I definitely took on too much yesterday, and that wont happen again. You are perfectly correct, when you are running around everyone thinks you are back to yourself, while in reality things are different.

  • Just wanted to add you have exactly the same type and grade as me, I was diagnosed in 2009 and have had no reocurance.

  • Thanks Joatkinson, I am so glad that you have had no reocurrance

  • Dear Damelza, it's all a bit much isn't it? Diagnosis, kids, husband and daily life. You're processing so much news that everything seems muddled. That's how it was for me too. Every arrangement I've made has pretty much been changed as it makes little sense. Please know this is quite normal. Plus ( and forgive me those of you have calm, kind faultless partners all the time) men just seem to react differently. They want to fix, organise, control and then compartmentalise.

    So the hair and holiday. Well, a holiday is a good thing. But the tour operator needs to know that you didn't understand the pricing. Speaking to an manager in their customer service department would help. ABTA are tour operator regulators have a complaint process. You may even decide between the 2 of you to go ahead with the break. Can your husband call if your initial conversation proves hard?

    And the hair. Well this is my experience. My husband loved my long hair and couldn't cope with the idea of no hair. I bought a wig. He's seen me with short hair and he's seen me with whispy tufts and he's told me he loves me and knows it will grow. I thought he wouldn't be able to look at me but he does and with love.

    I hope you have an easier day. Not sleeping makes everything so much harder. Please take care today. T. X

  • Thanks Rosewall, I talked to my husband and he said that he loved me so much that he wanted to do something for me before I start chemo. So I am praying that I can sort this mess out with the tour operator. As for my hair, we will just have to deal with that as it happens. Maybe I can try a wig on. Maybe I dont want to try a wig on. I think the latter is true. I am not prepared for this, I know there is no way to do this.

  • Dear Damelza. This is so tough isn't it. I went with a friend to try wigs on. I was pretty much in tears at the start and then believe it or not laughing at the end. The wig matched my hair. It means I can choose. Wig/hat/scarf. But I feel Nessie is right. It's questions for the oncologist first. Please go with someone when it's your appointment. They can help you ask your questions and importantly make notes of the answers. I often misunderstood comments or didn't remember all the answers. Little steps. T. X

  • Don't be so hard on yourself. This is a very tough thing to hear and what comes next will be harder. Prioritize about the money and other stuff. This is your life. Make a list of questions to ask your oncology team when you see them- chemo? Surgery? Side effects? Meaning of how cancers are graded. Ipuse the list. Mainly, be kinder to yourself. Use your inner strength and that of the ladies on this site. You'll see lots of advice. Best wishes, Nesie237

  • Thanks Nesie, I dont have any inner strength at the moment. My dad is acting like I am fine, which is probably my fault as I have started to go back to my old routine with him. We go out every Saturday for a meal with my boys. I dont want to overload him with everything that is going on. He never got over my brothers death, and I dont think we ever will. I have to go easier on myself. thanks aagain Nesie

  • Speaking as a man of the species...... should you lose your hair I am pretty certain your husband will be fine and accepting of the temporary hair situation.

    When my wife lost hers, well actually she shaved it all before it came out, but when it was gone she still looked as beautiful as ever......as will you if push comes to shove and you lose it.

    We menfolk often struggle to express ourselves properly but we all manage to eventually!

    Good luck, chill and focus on you.

  • thanks thehusband, but my husband is so sure that I wont loose it, I just want to prepare him or is there any point?

  • We were told my wife would lose her hair and even roughly when. I think it firstly depends on what chemo someone has because not all chemo results in hair loss. As for preparing yourself or your husband......well I guess expect to lose it, hope you don't but either way it's a part of the treatment path, and it's only temporary.

  • Families have trouble accepting all of the stuff which will be happening to you. Perhaps when you know the medical plan, ask your family to meet, tell them the specifics of the plan, how hard it is for you to handle with everything you are managing and simply tell them you will be needing their help, love, and support as you go through this process.

    You mention your brother's death. You didn't say the circumstances but if it was a long illness, they will need to gear up for another fight. My mother was sick the whole year I was sick. Just as I was trying to find some energy, she suddenly died. I didn't have the energy to deal with it so it fell on a sister's shoulders. But that's what families do, right? Support and love each other. It's not easy. It wasn't for me and it won't be for you. Keep in touch. If you have Facebook and want to friend me, my name is Denese Eastin. It's the profile where I'm wearing blue. No one else spells both names like that. Best wishes, write anytime, Nesie237

    And you do have inner strength, I didn't think I did either, but I'm still standing!

  • Thanks Nesie,, I am sorry that you have been through so much. Its hard to loose a parent at any time, but, it must be so much more difficult when you are fighting your own battle. My brother was an alcoholic, and it was from this he died. He was the same age as me 44.

  • That is awful about your brother. That was the battle he had to fight, and it's hard for the whole family watch someone go through that. I had an alcoholic father and I'm pretty sure my brother is also.

    But, Damelza (is that what you want me to call you?) you have your battle to fight and it's that you need to concentrate on now. Are you from the U.K. Or elsewhere?

    Yes, it was hard losing my mother as I was trying to recover. Mom had been sick for months, really for years, and died at age 91. I felt bad I couldn't help my sister more but just getting around was about all I could do.

    Now get your oncology team info together, talk to your family, and tell them you are going to need their help to fight this.

    Write on FB anytime. I sleepy poorly so am not too hard to get hold of.

    I accepted your FB friend request and sent you a message.

    By the way, I am really almost 60-next month. I can't believe it. With good care, rest, and faith you will live to at least my ripe old age. Take care, Nesie237

  • aww thanks Nesie.. will be in touch

  • My sister got annoyed with me for getting my hair cut and shaved and organising a wig myself, that was my way of dealing with it, I felt I was in charge of some aspect of it. I was on Carbo taxol so it was going to come out without any doubt. My sister started to grow her hair long. Many sisters get theirs shaved in sympathy!!!! My husband was sorry my hair was coming out but he went along with my decision. I didnt ask him or anyone to come with me. I think men get upset and perhaps to him losing your hair is making the illness more real . You wont really know what are the side effects you will get until you get a treatment plan. Then they will go over all that stuff with you.

  • Thanks Suzuki, the gynae doctor that gave me my results did tell me that I wiyld be on Carbo/Taxol. When I know more about the chemo and when it is going to start i am planning to get my hair cut short to start with. For the time being I just have to sit tight and wait..

  • Try and make the time now to investigate wigs and scarves before any side effects from the chemo kick in. You may initially want a wig that's similar to your current look, but perhaps later on you can experiment with new looks. It's easier with wigs! Have a look at Dollysmum's posts, she has a number of different looks, all very glamorous.

    For me, my wig looks better than my natural hair. You mention that your husband is upset about you loosing your hair. He probably passes by women ever day who are wearing wigs without knowing. They are so realistic nowadays you simply have no idea.

  • It is daunting really isnt it? You get a roller coaster of emotions. Once you have a plan and know when you are starting treatment it will help a bit. If you have any questions for your gynae liason nurse, write them down as you think of them. Most of us here have been on that regime and so feel free to ask what you want. In the meantime do try and enjoy a few days break with your husband, it is good to get away even for a day somewhere and clear the mind a bit. Just one tip, ask for Emend as the anti nausea drug, Motillium doesnt do it at all for me.

  • thanks suzuki, I have my appointment to the the oncologist next wednesday. I was relieved that I got it and now I am scared

  • Try and relax for the weekend, if you think of any questions write them down also it is good to have a second pair of ears at the consult, they wont mind. It is normal to be scared because you are going on a strange journey into chemoland. We have been there and it is doable hope that is some consolation.

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