Life after ovarian cancer

Hi

I can't share any similar experiences with you as I had a different type of cancer with different treatment but I noticed that you hadn't had any replies to your post yet. By responding to you it will 'bump' it back to the top of the discussion list where it'll be more easily spotted. 

x

Hi Harmoney4,

Sorry you're having such a hard time. My experience is very different from yours because my ovarian cancer is incurable and untreatable. I'm also older and child-free by choice. However, what might be useful for anyone going through the emotional turmoil associated with cancer diagnosis, treatment and the aftermath of treatment is counselling. My local cancer charity offers weekly one to one counselling for people at all stages of their cancer journey, and I have found it really useful to have a space where I can express my feelings, cry and come to terms with my terminal diagnosis without burdening my friends or feeling judged. I always come out of the counselling session feeling a bit more positive. I think Macmillan also offer counselling so have a look at their website and check out your local cancer charities to see if they can help.

Best wishes,

Sarah

Hi,

I'm so sorry to hear you are having such a difficult journey and your cancer is incurable.

Thank you for sharing your story and how you have found support.

Thank you for your advice, I will look into this.

Best wishes

Lucy

Hi, thank you so much for replying to my post and in doing so bumping it back up. 

Wish you well

Lucy 

So true

Hi Harmoney4, you're experience sounds very similar to mine! I am currently 38 and was 35 at the time of being diagnosed with a very rare form of OC. I had a cyst which grew on one of my ovaries and within a matter of 6 weeks it grew rapidly and left me looking like I has carrying triplets. The tumour once removed weighed just under 8kgs! I am now nearly 3 years NED but everything has changed and everyday I miss the girl I once was. I find it very lonely as family and friends never want to speak about my experience or talk about my cancer and just assume now that I am not having treatment I am fine which could not be further from the truth. Battling cancer has been the biggest part of my life and one that has caused so many unwelcomed changes that I now have to live with. I am so grateful to be alive and like you feel guilty for feeling like this, but I know a lot of survivors go through this and its a shame more support is not available and we're left to just deal with it.

Hi, I really appreciate your reply. It is really helpful to hear from somebody else who has had such a similar experience. Battling cancer as you say is such a big battle to go through and you can only understand if you have been there yourself. Also going through it all during covid as well made it a very lonely experience.

I agree with you it is a shame that more is not available as support once you are in remission because it is not over and there are after effects and emotional roller coasters to go through.

Like you I also find it tricky to talk to family and friends about it.

Can I ask you a question which of course you do not have to answer if you don't want to but do you have children or like me had that option taken away from you?

Thank you again for your reply. 

Hi, I'm glad my reply resonated with you. Like you said, unless you go through it yourself no-one can ever understand and that's why it is so lonely even after all the surgeries and chemo are done.

I can't imagine how much tougher it must have been for you to go through all this during covid too. You really have been through so much, and still are, please don't be hard on yourself, everything you are feeling is totally valid and it will take such a long time yet to adjust to all the changes.

So my experience has been a bit different. When first diagnosed I was due to have a full hysterectomy, my omentum removed and part of my bowel removed too. Because all my markers for cancer were conflicting, it was unclear if I had cancer until i was going to be opened up in surgery. I was told that during surgery if it was cancer I would wake up with everything i just mentioned removed and then have to live with a stoma bag, but if it wasn't cancer they would just remove the tumour. I had my pre-op assessment and was due to have my surgery in 3 days when somebody suggested getting a second opinion from a particular consultant which I am grateful everyday that I did.

The consultant i went to for a second opinion did not want to remove so much due to my age unless it was absolutely necessary and advised that he would be removing the tumour only and any cancer present if it was in fact cancer. After the surgery, it was confirmed that I had a very rare form of ovarian cancer and was stage 3a. My consultant was confident that all the cancer had been removed but i did go on to have 6 rounds of chemo and a further 12 rounds of immunotherapy as the type of cancer I had there is no known correct regime to manage it as not enough people in the world have had it.

Ahead of starting chemo i did 2 rounds of ivf and 1 egg was retrieved. During Chemo i was put into chemical menopause to help shut down and protect my remaining ovary so I completely understand all the menopausal effects you are experiencing. Never would I have imagined that menopause was this gruelling. The hot flashes were unbearable, the aching joints and my skin on my face and all over my body were just covered in the most horrific breakouts where the only thing I could do was spritz water on my skin as touching it was painful. 

I am out of the menopause now but have been left with such brittle bones, extreme weight gain, aching joints and the fatique i still face is not normal. My body feels like its a 70 year olds body, definitely not the body of the girl I used to be. I am dreading when the menopause comes round again as I now know what to expect and my heart honestly goes out to you that you are having to cope with this now. 

Regarding your question, I don't have children but I am able to still have them, however my chances are extremely low as I am not producing enough good eggs. If in the future if I am not able to I will most likely consider adoption. It's not something I ever thought I would be thinking about and I know it may not be how you had planned things to be and I hope you don't mind me asking but have you thought about adoption? 

If you ever need to talk through how you're feeling, please do message, I'm always here x