New & scared

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Hello I have been diagnosed with a rare ovarian cancer called granulosa cell tumor. It was found in my right ovary so that was removed in December 2023 .. since then I have had CT scan and 2 MRI scans with contrast and next week a nuclear bone scan as they found some findings and need to see what they are. I feel very lost and confused not knowing what to do or say. I have been getting some very bad pains in my right pelvic area to the point where I can’t walk to well and I thought the pain would go after the ovary and tumour was removed and it’s coming back  but much worse then before. I’m trying to lose weight but I can’t walk more than 20 minutes without being in pain …. My GP said I am swollen and it’s doesn’t look great but I dont know anything about this cancer can it grow back quickly and in the same place … can it spread to my spine ? I just don’t know who to ask I feel useless 

  • Hi Faithtrust, I haven't got the same cancer as yourself, i have popped on for some moral support. Its all so scary in the begining i know, you dont know where to go or look for advice and help. It looks you are getting all the right scans to make a proper diagnosis they have to investigate all areas just to be sure. This is the worse part waiting for all the scans to be done and seen by your team, and unfortunatly it all takes time. The pain could be many things but when first diagnosed we all seem to go into overdrive i know i did. Its ok to ask your GP questions but really no one has the answer yet till all scans have been done and seen. You can always ask a oncology nurse if you have been asigned one yet to put your mind at rest. I dont think anyone can say at this moment in time, will it come back, has it spread they just dont know. When you have the answers and a treatment plan thing will get better, it all the waiting that makes us anxious. I wish you all the best in your treatment plan Dawn x

  • Thank you for your message, I have adhd so I’m finding this extremely overwhelming and understanding is hard for me to take it all in, I overthink. You are right though until all the scans come back I don’t really know anything more. My GP has requested the team to make contact with me due to the swelling. They have all been great I just don’t want to keep bothering them with little things that could be nothing. Thank you again for your message please take care xx 

  • Hi  and a very warm welcome to the Community but sorry to hear about your diagnoses.

    Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot.

    The New to Community is like our reception desk where we look to direct you to the best part of the Community for you to get support. The Community is divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Ovarian Cancer support group. This is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

    To connect in with the group click on this link>

    Ovarian cancer

    .......then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)

    When you are ready you can introduce yourself by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.

    You may find it helpful to call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

    We also have our Ask an Expert section but do allow 3 working days for a reply.

    Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.

    Do get back to me if you need further help navigating the community ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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