Hello, I am new to this site so will give you an overview of what has happened to me and where I am now. I was diagnosed on 3rd December 2020 with Ovarion cancer. I was extremely lucky in the fact it was caught very early. I have a defective gene BRC2 which means I am at high risk of breast and ovarian cancer. In 2016 I had preventative surgery undergoing a bilateral mastectomy and reconstruction with no cancer found. I was 45 at the time. In Nov 2020 I went in for preventative surgery for my ovaries to be removed. However, although CA125 levels were all normal and nothing visible to the naked eye in either scan or surgery, my results came back as having a high grade of microscopic cells in my right fallopian and overy. A hysterectomy followed with 6 cycles of chemo Carboplatin. My 3 monthly check ups have been all good. However, today my wired has fallen apart again as my CA125 Levels are showing 119 so I am thinking the worst and worried about what will happen now. I have had more bloods taken and am waiting for an urgent CT scan. I am terrified it is back and what my future holds , I am 51. I would love to hear from anyone with a similar story and to give me hope.
Hi Bluebear and welcome to the Online Community but so sorry to hear about your diagnoses and your ongoing journey.
This is such a stressful and challenging time for you, but when it comes to getting support and asking questions there is nothing better than talking with others who are on the ‘exact’ same cancer and treatment journey.
The Community is divided into support groups (discussion rooms) I do see that you have already joined 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.
If you'd like to connect in with a group click on the Green (Bold) link I have created above then once the group page opens you can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post.
Macmillan have many support services so do check out the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. These services provide 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 a few working days for a reply.
We also have our Telephone Buddy Service where you can be matched with someone who understands what you're going through, and they'll give you a weekly call.
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 aim to give support to all the family.
Do get back to me if you need further help.
All the very best.
Hi, links on the community are normally text that is in a Bold typeface so for the group you are looking to join click on Ovarian cancer and follow the instructions in my first reply.
