Hi, I'm new to this group.

Hi Lindyloo67 and welcome to the group.

I noticed that you hadn’t had a reply to your post yet, and although I didn’t have the same type of cancer diagnosis (mine was cervical) I have been through surgery including removal of my ovaries and Fallopian tubes, chemotherapy and radiotherapy, so I hope you don’t mind me replying.

It’s very difficult getting any kind of cancer diagnosis, and we all get bombarded with lots of information which can be difficult to understand and absorb. The medical professionals who are desalting with this every day sometimes don’t seem to realise that this is new and scary for us and we may not understand the medical jargon they use.

Are you able to share a little about your diagnosis and what you’ve been told so far? It will be easier to connect with others if you can say where you are in the process and get some support. Do you know what treatment you’ll be having yet?

I hope you’ll feel free to post any questions in the group and we will try to support you, and point you to other resources which might help.

Sarah xx

Hi Sarah, thank you for such a kind, gentle reply.  I'm so sorry you've had to face so much yourself, how are you now?

My story, I went to the urologist because I'm up sometimes 4 times at night, a scan on my bladder showed a cyst, I didn't think it was an issue but redirected to a gynecologist,  rescanned to check it was a cyst and not my bladder due to its size, CT scan, bloods, the markers came back at 174, I still wasn't understanding what all this meant, I am an anxious person with adhd so one word can set my anxiety off.  I then was called back to hospital and thought I was seeing the same gynecologist and didn't not the oncology on the end! 

At age 39 I had a partial hysterectomy,  leaving my ovaries.

I was told that I have a complex cyst, higher blood counts so to presume I have cancer, I was sent for an MRI scan immediately for my pelvis and everything was sent to a multidisciplinary at the Imperial Hospital in London.  I had my pre-op last Friday and having an operation to remove, ovaries, cyst, fallopian tubes, black mass and fatty lipids?? 

How can you presume you have cancer but not know? My work are being unhelpful as I'm told its a 4 month recovery and I'll be dropping to half pay in 5 weeks, I have a mortgage and no partner so finances are a worry.

I feel I haven't a clue whats happening, I don't feel ill, I'm overweight so find it all confusing....

Xx

Hi again Lindyloo67 and thank you for coming back to me.

Gosh, it’s a lot to have going on, and especially difficult when you suffer from anxiety. I have suffered from general anxiety and been on meds to help with it, and now suffer from ptsd so I understand how even one thing can tip you over into panic mode, 

So, am I understanding correctly that you haven’t had a cancer diagnosis yet, but are presuming that you have it based on what’s been found? My own way of thinking is that it’s not cancer till they tell you it is, and that helped me in the beginning. Cysts are not always cancerous, and the CA125 blood test, if that’s the one you’ve had, can give a high result for reasons other than cancer. 

The not knowing for certain is very difficult to handle..it sounds like you haven’t had a biopsy, which would give you the answer, but you’re having surgery to deal with what has been found. In that case, what is removed will be examined in the lab, and that will give the confirmation of cancer or not. Now that you’ve had your pre op you shouldn’t have long to wait for the operation. It’s good that you’re feeling well, and haven’t mentioned pain, so that should stand you in good stead for recovery.

It’s disappointing to see your work isn’t being more helpful. If you do have a cancer, you will be protected under law and Macmillan have a team of advisors who can help both with work related questions, and financial advice. I’d really recommend giving the support line a call (the number is in my signature) to have a chat. I’ve called them myself more than once and they are extremely kind and helpful. They also have nurses who can give advice on your medical issues. If you prefer not to call, you can contact by email or web chat, but calling is the quickest way to get advice. 

It’s horrible to have money worries on top of medical worries, I know. I was lucky in that I didn't have a mortgage, but I was retired with not a lot of funds, and in the end I was able to cash in an old work pension which was a big relief. Macmillan will be able to advise you if there is any financial help available to you which could help.

Please keep in touch and let me know how you’re getting on-it’s very tough to be facing this alone, but there’s always a friendly ear in the community to help support you through. 

Sarah xx