34 years old, no children! only treatment is Hysterectomy? Help!

[IMLF]

I have been diagnosed with ovarian cancer stage 2b after suffering a miscarriage. My left ovary has been removed but the cancer has spread to the right ovary. Cannot do IVF as the right ovary is very damaged. I am struggling to deal with the fact that I cannot have children and for me the cancer has always been secondary. The treatment suggested is a complete hysterectomy and chemo after.

Has anyone found themselves in this situation, I do not know if I should have the complete hysterectomy or leave my womb, which no one knows if there is cancer in that area. If I leave it will egg donor be viable?

My indecision is based on the fact that I really want children?

Please help with any advice!

Thank you

Isabel

[wendydee]

Hi Isabel

I'm so sorry to hear of your problems. It sounds as if it's going to be really hard to make all the choices. I know of another woman on here who is going through something similar, Her name is Catherine. I never made it with children and ended up having a total hysterectomy and ovaries etc etc taken out when I was 52. Believe me, there is life afterwards. However, that's no help in the here and now is it? Maybe there's a fertility or conception adviser at your hospital that you can talk to to get further advice. Your specialist nurse can help you here, I'm sure.

I just wanted you to know that there are a lot of us on here who can listen, if not give the answers you need right now.

You just have to put yourself first for a little while. Look after yourself, have a few treats if you can, enjoy the company of friends and family, try to keep calm and get some more expert advice.

I know when you first find out about what may be, it's a really scary time, but you will get through and there are options for you to consider, I'm sure. Sorry if this is no help really. Let me know how you get on

Love Wendy x

[Hidden]

Hi Isabel,

Life has a way of making us make new decisions about what we most want, sometimes. It sounds as if this is going to be a hard, radical change for you. However, there are things in your favour, not least your age, which means you will be able to cope better with the necessary treatment. The hard truth is probably that if you managed to have a child you might not be around to see him/her grow up. So, the best option becomes making the best of the situation you find yourself in; having the necessary treatment, getting well, then exploring other options such as adopting.

The journey you are on is bound to change several times before it is over: and your ability to change and accommodate to it will be tested. Make up your mind to go with what you cannot change, but to do everything you can to wrest something positive form it - and who knows, you might just find another way of getting what you want. You have to start with the one thing you can control to some extent; your health.

Very best wishes,

Isadora

[linnet]

Hello Isabel

First of all- please be kind to yourself- this is really really difficult, whatever you decide to do.

second- no you are not alone in this.- have a look a the forums for the younger womens support network on this site that is in the process of being set up. If you speak to the very lovely Ruth Payne on the support line she will be able to give you further details.

I was 35 on diagnosis, and like you have no children and a full hysterectomy followed by chemo was the recomended treatment. I was very conficted on having the treatment as emotionally I really didn't want to give up the option of having children- but logically knew that the treatment had a high probablity of saving my life. having a hysterectomy felt like a most 'unatural' choice.

yes, there are ways that you can have children in you life other than biologically- and this can be a possitive- through fostering or adoption, or relationships with other children in your family- it cannot be the same, but can go some way to fill that need to nurture.

please- if you have any doubt- look for a second opinion- and do see out the support of others- these are the two things that have helped me cope psycolocially with this most painful of experiences

all the best- all kind wishes

Lin

[Victoriam]

Hi Isabel,

Like yourself I was diagnosed at an early age (30) and were trying for a baby. I was diagnosed with 2c and had both ovaries removed and requested my womb to stay in. No eggs could be saved or extracted. I started to have changes in my womb and had the mirena coil instered to try and stop cell changes. I ended up having to have a full hysto after all the chemo. The anxiety post chemo is not worth it. We are looking into surrogacy now. Even though we were trying for a baby at the time i was diagnosed i have now eventaully accepted I can't have a biological child of my own however I am just glad to be alive and perhaps get the chance to be a Mum at some point. I really hope you get through this emotionally, it is so tough I know, the mothering instinct is so strong. xx

[IMLF in reply to Victoriam]

Hi, thank you for your reply. It is so difficult, I keep thinking that if I managed to get pregnant then I can still have children. The problem is the consequences of delaying the surgery. I was in doubt on whether I should or not remove the womb, but to go through another surgery and the anxiety of wanting to have a child and then not being able to carry it through will leave me an emotional wreck if not to say depressed. There is so much to think about and so little time.

Thank you very much for your reply please do let me know how you get on with surrogancy, it is still early days for me as the surgery is only in 3 weeks and still have to do the chemo, but hopefully if I overcome this I would like to know of all the options available. X

[Victoriam in reply to IMLF]

Like you I was all about the infertility at first then it became apparent to me that I had to survive to have any children! I got scared when changes started in my womb and that the docs were not pleased I wanted to keep this as it lessens the effectivenss of treatment. I decided to have the operation and I now have two options now that I am in remission to either adopt or do surrogacy. These are much better options to face rather than having kept my womb and face the more likely situation of the cancer returning/getting worse and to not be here at all and face never having the chance to be a mother. It is all about fighting this horrible disease and survival now. I really hope you can get your head round things, it is the worst decision I know but you have to do what is right for you xx

[dundeegirl]

Dear Isabel,

I'm so, so sorry to hear you're in this position, it's utterly heart-rending. The ladies above have all given you sound advice and I don't feel I can add much, but I know absolutely what it is like to have to face infertility in your thirties (I'm 33 with no kids), out of the blue, and what it is like to struggle with that.

I also have had borderline tumours but I'm in a slightly different position in the respect I still have my womb for just now, although the doctors want to remove it once I have finished trying with IVF. (I also had borderline tumours on both my ovaries and they both had to be removed last summer, all very suddenly, but I was able to save some eggs and have been given some time before they remove my womb).

However, I do feel like I know a bit what you must be going through, for me the infertility is the biggest issue to deal with, like you I have no kids, and with the IVF the chances are much higher that it will not work than that it will, i.e. it's an outside chance. I know that you have to think of your own health first but I have found that extremely difficult. A part of me knows it is the right thing to do to look after yourself first, but it doesn't mean you don't feel conflicted about it, when having a family feels just as important. I totally understand what you mean about the fertility issues being number 1 and cancer second, that is how it is for me. My best friend helps me by encouraging me to look after myself and to think about surrogacy and adoption as options. I find these options both comforting as I know that it means I could still be a mum and have a family. But I know these are not the right choices for everyone.

Please do stay in touch on the forum, don't feel alone, and if you ever want a chat I'd be really happy to swap numbers. I haven't met any other younger women my age with borderline so I think it must be quite rare, and it can feel lonely. However, the Ovacome forum is a fantastic support, and as other ladies above have said there is also the Ovacome nurse specialist and the Younger Womens Group if you live near London, too.

Love and prayers

Catherine (Cat)

xxxxxx

[dundeegirl]

Dear Isabel,

I just re-read your question and I noticed I got mixed up and thought you were also 'borderline' - so sorry for confusing things. It sounds though like our treatment is similar, for me also removal of ovaries and the womb is the main treatment.

I hope you're finding support through the site and elsewhere, be very gentle with yourself if you can and ask all the questions you need to - your hospital team will know what you're going through. Is there an infertility counsellor at your hospital? I got referred to one at my local hospital, it was just a couple of appointments, but it really helped.

Thinking of you,

love

Catherine

xx

[IMLF in reply to dundeegirl]

Dear Catherine and all

My surgery has been booked for this Friday (on my birthday, some more bad luck!). I still have not decided whether I will keep the womb or not, it is so difficult, if I had managed to save some of my eggs I would not have had any doubts and would have kept my womb but even without my eggs I keep on thinking maybe I can use an egg donor and still carry a child.

However if I go down that route and it does not work I will be devastated and angry with myself as I could potentially delay any adoption process.

Hopefully by Thursday I will have my mind made up.

Thank you all. X

[dundeegirl]

Dear Isabel

Thank you for keeping 'us' up to date with where you are at. I'm sorry to hear that your operation has been booked for this week, it sounds as though you are feeling under such pressure to decide what to do, and extra time pressure doesn't help.

I know it is incredibly difficult to treat yourself compassionately when you feel under pressure to make such life-changing decisions. Try if you can to be gentle with yourself. It is very difficult when whichever decision you make feels like it will come at a cost, but you are doing the best you can, and there is no reason to feel angry with yourself, no matter what you decide.

I'm not sure whether you were able to get any more information or advice from your doctors or other sources like the Ovacome nurses? I know nobody will be able to tell you what to do, but someone impartial might help you to weigh up the options. Your doctors should be able to give you advice on the balance of risk and benefits. (I know in my own case that the doctors acknowledge there is a risk in my delaying hysterectomy, but the risk is considered manageable and they keep checking me with CT scans. But I don't know if this is because my tumours were 'borderline' - I imagine this depends on what 'grade' your cancer is - but the docs should be able to advise you on this).

You also sounded concerned that if you did keep your womb, and then if fertility treatment didn't work, you might feel worse somehow for having tried? (Or maybe I misunderstood!) I guess how we feel about fertility treatment is personal to each of us and our circumstances. But as someone who is going through it at the moment, I wanted to say that although fertility treatment can feel like a 'rollercoaster', and although I know that there are no guarantees it will work, there IS emotional support available if you did decide to do it, and networks a bit like this one for women who are going through it (for example Infertility network UK).Obviously I don't know your circumstances, and everyone is different, but for me personally I don't know if it's inevitable that you would feel worse for having tried it?

Have you been able to get any information from the doctors at the local fertility unit about the possibilities of using donor eggs? I don't know if you've already had an appointment to talk through the options at the local IVF department. The hospital should really have a fertility counsellor too. It can help to hear people's viewpoints, but for me anyway this can sometimes be confusing too, as everyone has different circumstances, and slightly different medical conditions. I found talking to the fertility counsellor was helpful as she was really impartial and helped me to really consider the different issues.

Because of that I'm really reluctant to give you any advice, I'm not sure if it would really help. It sounds from what you are saying that it is very important to you to have a family as soon as possible - hence you're worried about delaying applying for adoption if you opt not to have the hysterectomy. Obviously I don't know your circumstances, but I'm wondering what the time pressure is with adoption (I haven't looked into it properly so forgive my ignorance - I imagine it can be a lengthy process in itself and you maybe just want to get started?) It feels a bit to me like you are under immense pressure already, and maybe you are putting yourself under extra pressure? I know it's really hard to take things step by step, especially when you're having to make such huge decisions. But sometimes you have to give yourself space. (Not that giving yourself space is easy - I can't do it on my own, that's why I go to see a counsellor).

We are all different and obviously I don't know your circumstances. I just know for myself that the operations and treatments all came so thick and fast, and I really needed time afterwards to begin to come to terms with what had happened, and to recover physically. I also felt like I really needed time to come to terms with how my body has changed and the implications for my fertility.

I'm sorry - having said I wasn't going to advise you I feel like I've just given you a bunch of advice.

I'll be thinking of you this week Isabel, if you'd like a chat anytime just let me know,

love from

Cat xxxxx

[Ginger32]

Hi Isabel, I have recently had Endometrial Cancer at 36 years old and also have no children.I have had a full Hysterectomy, Ovaries, Womb and tubes,and with the shock of it all I have only just come to thinking if I should have had the option to save some of my eggs. This has never been mentioned to me and I feel somewhat cheated in that respect and it's heartbreaking now i have realised this. I can't answer your question but i hope that you will find some comfort in the fact that you are not alone. All the best to you and your family.xx