Any survivors of ovarian cancer without having surgery?

Hi , i am new to this group and was wondering if anyone can help to share any information that they are aware of , where someone has had ovarian cancer and survived without having ovaries removed or hysterectomy?

I am 37 years old , and i have stage 1C, the grade 2 tumour was found in left ovary and removed via a laparoscopy.

Some free fluid escaled and testes positive.

Dialogue between oncologist and myself has not been so helpful. He couldn't answer many of my questions.

I don't want the hysterectomy or my ovaries removed. I believe that the cancer cells will be destroyed by my body through natural remedies.

I cannot face losing my organs at this age, onset of menopause without HRT and even a hysterectomy which will lead to my bowels falling lower into my abdomen as there will not be any support and never having an enjoyable sex life again.

I am wondering if i should just allow myself that die. I don't see the sense in growing old if i wont be happy with losing all my organs in a hysterectomy. They also suggested removal of the lymph nodes which can cause serious long term permanent swelling of the legs.

I am open to chemotherapy... but not surgery.

I just can't go on like this.

Please could you let me know if i will have certain death bu not having the surgery. What are the stats?

Thanks

15 Replies

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  • Hi Lollie,

    I don't think I can really answer your questions, but you could try the Ovacome helpline for more support about the options available to you. There's also a Younger Woman's Guide to Ovarian Cancer, which I found really helpful when I was diagnosed earlier this year as stage 3 at 38.

    I didn't have much choice on the surgery as my cancer was pretty advanced, but I was very worried about the menopause and the effects of having a hysterectomy. All I can say is that it hasn't been as bad as I imagined, and sex is still just as enjoyable as it always was - everything works just fine in that respect.

    I hope you can get some guidance as to what options are available to you and can reach a decision as to what you want to do.

    Yoshbosh

  • I know this diagnosis is devastating. You need reliable information and answers to ALL your questions to feel comfortable making choices for treatment. I understand exactly how you feel. Before I found my incredibly skilled gynecological surgeon, I had decided to not have any treatment and to just die!!! I was afraid to live without most of my female organs and whatever side effects chemo would leave behind. My surgeon answered every single question and then put me in touch (with his patient's permission) with a 6 year out survivor who'd had exactly what I had. That was 13 months ago. I am currently NED and getting my life back! More details on my profile.

    I am also a breast cancer survivor with a mastectomy I had in 2006. It was actually not so tough deciding to have a breast removed. I was going to do whatever I had to do to survive. I have no regrets. Tesla

  • It's usual to carry out a full hysterectomy for women age 50 and over whatever the stage of their cancer. You, at 37, have more options especially as you are early stage 1C with a grade 2 (moderate speed of any cancer cell growth).

    Whilst lymph node removal can still be the normal procedure , especially if there is visible cancer outside of ovaries, it can cause a lot of problems after its done. I did not have any lymph nodes removed and I am aware that lymph node removal has not been shown to have an impact on survival rates and that there is a trial due to publish next year that medically looks at NOT removing lymph nodes.

    IC is an early stage which is good, if your cells were found in the fluid due to the rupture of your tumour then you should discuss with your Oncologist whether he or she thinks that chemotherapy would be a good idea - if you had a grade 3 cancer (fast growth cell which you don't have) then I would advise for chemo.

    You wrote about 'natural remedies' - please research thoroughly and be aware that there are lots of weird and wacky ideas around which won't do anything.

    I've had a full hysterectomy and my bowels are still in place!!! I think you've been reading all the very rare Internet stories!!!! You need to speak with your oncologist and I'm sure you will find comfort from a rationale discussion - fear is quite a powerful disruptive emotion.

    You ask if you will have certain death by not having surgery - my blunt reply is that we are all going to die and NO ONE can tell you HOW or WHEN or through what. The good thing is that your cancer is early stage and that goes in your favour.

    Please speak with your team or own doctor again.

    I have replied but I am NOT a medical person so you should list all your questions and talk them through with your team

    Or ring the freephone help,Ine on this forum 0800 008 7054 , it's open today

    Take care

    Clare xx

  • Round of applause for Clare! This lady talks sense 😘 xxx

  • I also had the hysterectomy andbowels are actually functioning better. Good luck

  • Hello, I can't respond to most of your questions, but wanted to say:

    I had a full hysterectomy in September, and my bowels are fine.

    I'm single so I can't comment on sex, but have read some people find it more enjoyable.

    When I received my diagnosis (and found out I'm not sensitive to the CA125), I asked the following:

    How will we know I'm in remission? Answer, we won't

    How will I know if I have a recurrence?

    Answer, we won't

    I was very upset, and then I thought about it:. People without ovarian cancer don't know what's going on inside their body, why would I think I should know. I quickly accepted that I had to do the treatment and live my life to the fullest, because nobody gets a guarantee. I went to Cuba for a week a couple of days later.

    Wishing you and your family all the best as you fight this evil disease. It may not be curable, but fight for every minute with your family.

  • Hello, it is all a bit of a shock isn't it, not sure I thought straight for 6 months after the diognosis.

    I had a full hysterectomy with lymph node removal as I was 3c. Lymph nodes were taken because they had tumours on them. All samples taken tested positive for cancer so nothing was taken gratuitously.

    I wanted the best chance of survival for as long as possible whatever the cost and told the surgeon that, I think you have to decide what your personal priorities are and that will help guide you. I have an 11 year old so for me the choice was easy.

    Apart from the scar down the front I wouldn't say I have noticed much of a change to where everything is. I've suffered no lymphedema although I was warned if was a risk, I have a little neuropathy from the chemo.

    Life is slightly slower pace at the moment but I can feel my strength returning 6 weeks post last chemo and hope to return to work in April.

    I have friends who have gone through the menopause naturally in their late 30's and friends who have had a hysterectomy because of other issues. All are sexy, confident, active women. Don't be put off by scare mongering on the internet. Don't have it unless you need it but be open to it.

    Talk to the advice line on here and maybe your specialist nurse. Take care.. xx

  • Hi I was dianosed with stage 3 ovarian cancer two years ago without having historectomy but they took away from ometum cancer as I have allow immune system any way they did not take out any more because risk of infection I have been on several chemo for maintenance only I have low moments but I push myself on there is a lot of support on here although you may think it right now you will move forward and the surgery was not that bad although it is up to the individual hope you have a merry Christmas and keep in touchxx

  • HI there, Clare has made really valid point and perhaps read her reply a few times. I was older when having surgery but had I been your age, I would have gone for full surgery no doubt about it. If it means fighting for my life, I will do what I have to do, It is easier to go with the flow and depend on your team. If you are not happy get a second opinion. I would also think it is a good idea to ring the Ovacome Helpline for further help and advice. It is a big decision to make but its best to get your questions re menopause answered by the professionals. I suppose the worst part is losing your ovaries and not having a family later, Could some eggs be frozen that may be an option to consider too, Sorry I cant be of more help

  • Thanks everyone for your messages...

    seeing that most of you had hysterectomies and are fine , gives me hope. Im just sad to lose my fertility and there isnt much encouraging information online about sex after hysterectomy. I feel like my life is doomed. I dont want to go on antidepressants. And from what I understand, few women with ovca cannot have HRT. Is this true?

  • My relationship is just as it was so please do not believe all scare stories as I did the same!

  • Some women may find sex after a hysterectomy difficult, but I'm sure there are a lot more scare stories out there than positive ones - there's nothing to share if everything is just as normal, is there?! Women wouldn't post an update on here saying 'Phew! Sex is awesome and just the same as before!' because that's sharing too much information for most people.

    I hope now that you've had a few days to mull things over you have been able to make some decisions that feel right for you. I meant to check back in on this post to see how you were doing, but missed it in the Christmas excitement.

    Much love xxx

  • Hi there,

    I totally understand your pain, I really do. It is like I wrote that email.

    I was completely devastated at age 43 to be told my surgical and chemo options 12 months ago, for a grade 2c.

    I even delayed chemo for weeks because I could not make up my mind. I literally begged the surgeon not to do it. But in the end I kind of gave up and gave myself to the medical teams as there seemed no other option right then.

    Plus my cancer was aggressive and fast mounting ca125s frightened me. My mum died of this so I knew I had to act fast in any direction, either act of give up.

    12 months on? Yes, I have struggled with the menopause and yes I was heartbroken to have my chance of children taken away. There may be egg freezing options to you? For me there weren't as both ovaries were affected.

    Yes, there is no denying it is hard to live without the hope of a family but do you have a partner or husband or family? Do you love them and want to be there for and with them? This was what I clung to, the boyfriend I had and also my beloved animals. This got me through.

    Please trust me when Say that the surgery is much better than the chemo.

    My sex life bounced back after about 8 weeks and I had no problems other than some soreness in the beginning but that soon faded. My bowels have not dropped and my stomach although scarred is still all fine and in one place. So you will be fine.

    All this will be terrifying to you right now and I wish I could help you. Where are you based?

    But please know that you would have to take an enormous risk with alternative remedies. My father is an alternative cancer specialist so .i know about so many treatments. It is your choice. But please know that you can get on with life again and the surgery heals so very fast. Your body will surprise you I promise.

    I am sending you love and please email me if you need any help or have more questions?

    Others above have also given good advice.

    You have your stage on your side and can act on this, so although it is still awful please give thanks that they found it pretty early so you can some great chance behind you already

    Xxxx

  • Hi Lollie - sorry, I wish I'd read this post first before my other reply....I understand now that you've had one surgery and are strugglng with the idea of the second.

    Most of do have the second as it's thought most OC originates in the fallopian tubes.

    I can understand how hard this is to contemplate at your age.

    You've had really brilliant advice from other women on here.

    I too can confirm that I've had a hysterectomy and everything works just fine. Not the same as when I was 37, but then I am 64, but works nevertheless.

    And there was a session at a Members' day a couple of years ago about sex and relationships with quite a lot of helpful organisations mentioned.

    Do you have a CNS you could talk to?

    Good luck with it all xxx

  • Hi lollie i am only 30 and was diagnosed with stage 4. I had to have a full hysterectomy and I dont have kids. It was the hardest decision of my life. I had so many friends and family around me though who tried to help me through it. In the end I decided my life was worth more than having a child. Once I am back to be normal me and my husband are going to look at adopting. Please don't think you will Never have the option of having kids although you won't be able to carry them, you will be giving a child that needs u as much as u need them a better life than they would have. That's what keeps me going anyways. As for menopause I hate the hot flushes but apart from that it hasn't been to bad. If u do need to talk though just message me and I will be here to listen. Sending you hugs

    Leianne xx

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