Clear cell ovarian cancer

Hi marchhare and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment to date into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

hi marchhare  my daughter has clear cell carinoma of the ovaries got diagnosed just b4 xmas shes 25 and has stage 3b .scary shes been having chemo but at to stop due to pneumonia hopefully start chemo again soon .they wont operate yet cos its gone to het tummy linning and are trying to manage it til surgery hopefully ,it hasnt gone to her lymph nodes but i know one the of the targets is radio maybe thats what they do for the type of cancer u both have ,bit of a novice myself hoping to grab any information i can ,hugs and best wishes that someone else will know more x

Hi Zoeynick, so sorry to hear about your daughter. Clear cell is unfortunately quite rare so there is not much information out there. If I hadn't had the heart surgery in September I would have been on chemo now, start the radiotherapy in a couple of weeks. Not sure what the side effects are, have to wait and see!  I have just come across a website called Ovacome.org.uk which is for rarer types of ovarian cancer including clear cell. Haven't contacted them yet but hopefully they will have more people who have experienced this, and it might be helpful for both of us! All the best x

Hi marchhare 

Thank you for posting about Ovacome www.ovacome.uk

I’ve had a different gynaecological cancer myself but have often seen it mentioned as a very good source of information and support for those with ovarian cancer. It can be difficult sometimes, even on a community like Macmillan, to find others going through exactly the same thing if your cancer is a rarer type. 

I’ve had a lot of pelvic radiotherapy for my cervical cancer and many of the side effects are similar. There will be other ladies in this group who have had radiotherapy as part of their ovarian cancer treatment, so even though the type may not be clear cell, you can still get support in this group. 

All the best with your treatment, and please keep asking any questions you need to.

Sarah xx

Hi marchhare 

I have clear cell and it has spread to the lymph nodes in my neck as well as other places. I am only being treated with chemotherapy for all of it. I don’t have any ovaries and have a large growth in my colon that has the clear cell make up, probably from endometriosis. I’m sorry I can’t be more helpful and wish you well in your treatment.

Hi FloC

I too had endometriosis for most of my adult life. Clear cell certainly seems to be related to that. I had chemo following the op in 2021. So far my lymph node spread is only to one area. I hope your chemo treatment goes well.

Hi thanks for replying that’s brilliant thanks so much for the link will be looking all the best for you hope everything’s goes well x