Hi Hendj,

A very warm welcome to our forum.

I am so sorry to learn of your experience so far. Did you get any further clarification at your appointment with your consultant today? I do hope so!

Please keep in touch and let us know how you got on. We are always here for you.

Kind regards,

Jolamine xx

Thank you. Alas! No clarity provided today. The ovarian cancer marker tests were normal. Apparently, it’s a “very unusual” cancer and it’s taking time to determine its origin. Another two weeks wait now while the original biopsy is examined further. I feel perfectly well. I know my liver, lungs, pancreas, lymph nodes, kidneys and ovaries are clear. Bowel cancer blood results are due back soon (my regular bowel screening was clear a few months ago). I’m no wiser today though! 

Hi Hengj,

I am so sorry to hear this. I had a very rare breast cancer when I was first diagnosed,15 years ago and know just how frustrating it was waiting for all of the additional tests and then their results. It's good to hear of the positives too - at least you know that a number of your organs are clear! I hope that your blood results come back soon and shed more light on the situation.

Please keep in touch and let us know when you find out more.

Kind regards,

Jolamine xx

Thank you

i hope you made a full recovery xx

Well it didn’t get any better …

Eventual diagnosis is Stage 4 endometrial cancer that has spread throughout my abdomen. Surgery is not appropriate because of the spread,  so chemotherapy is the only option. This will hopefully shrink the cancer, maybe eradicate it, but essentially not cure it. It’s a rare type that won’t respond to immunotherapy but may be helped by hormone therapy after chemotherapy. It does have a high recurrence rate though. Will be a chemotherapy session every three weeks for five months, with a CT scan to check progress after three sessions. It could have been there for 10-15 years without symptoms. Obviously depends how well I / it responds to chemotherapy. Not great news but at least I know.

Hi Hendj,

Thank you for your update. I am so sorry to hear of your diagnosis and I expect that you must feel pretty shell-shocked, given that you've had so few symptoms and no pain or tiredness. It seems scandalous that it has taken so long for you to get a diagnosis. This is certainly not the news you wanted, but it does help to know what is going on and what treatment lies ahead. How are you feeling in yourself? I expect that there's quite a hotchpotch of emotions running through your head at the moment.

It's a pity that this won't respond to immunotherapy, but here's hoping and praying that the chemo works! There have been similar instances where it has before. Don't even think about recurrence for now, just take things day by day and see how things pan out.

Have you been told when you will start chemo?

Thinking of you and I'm always here for you.

Kind regards,

Jolamine xx

Hi Hendj.  I am sorry to hear about your Stage 4 diagnosis.  I had stage 3 breast cancer 12 years ago.  Had op, chemo, radiotherapy and hormone blockers.  Went to the doctor in March 24 with pain in hip and back.  They sent me for an X Ray and found two sclerotic bone lesions.  I only saw this on the NHS app.  The doctor never followed it up or phoned me.  I eventually phoned the doctor and he said there was nothing to worry about and he was 99% sure they were benign lesions.  He sent me for physio and she sent me for MRI.  Works out I have Stage 4 breast cancer with mets in all my bones.  I feel let down too so know what you feel like.  It took me nearly 8 months to start treatment from when I went to doctor.  I also had to take medical retirement due to ill health and I have worked there for 21 years so It made me sad.  You do sound like you have got this.  The best piece of advice I was given is to try and carry on as normal.  Like you said not to waste our precious energy on negativity.  I just wanted to say you are not alone and wish you well.  Big hugs.

Lee x

Thank you for replying Lee. It makes a difference to know that someone understands the frustration. I am so sorry that you’ve had this experience. I hope you are doing ok - are you able to have any further treatment? 

Hi Hendj  yes I am on Ribociclib which is a targeted therapy , Exemastane and denosumab injections.  The ribociclib has same side effects as chemo but I am tolerating it well.  So hopefully they can control it spreading.  I still walk my dogs every day and try to keep things normal.  I am 59 years old, soon to be 60 but plan to be around for a long time. Lots more wine to drink :)    How are you doing today?  

Lee x