In limbo land

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Hi, feel a bit of a fraud posting here as don't have a certain diagnosis yet but feeling very much in limbo land just now.

 43, premenopausal. Saw GP back in July as had some bleeding between periods, I'm on tamoxifen as had breast cancer 6 years ago when I was 37.

GP referred me for an ultrasound that showed some fibroids and a simple ovarian cyst, the plan was to rescan in 3 months. 

GP didn't know how to treat my heavy periods as I can't take anything hormonal due to precious breast cancer being hormone receptive so referred me to gynae. 

Saw gynaecologist who requested a hysteroscopy, the 3 month rescan of the cyst and did a blood test and that's when things got a bit scary.

The hysteroscopy came back clear but my Ca125 has come back raised, prompting the consultant to request a ct scan that I had almost 4 weeks ago. I don't know the number, I'm scared to ask. 

Had a call from gynae oncology the other day to say ct scan showed a 4.7cm lesion on the left side of my womb (I assume this is the cyst they were scanning for but nurse couldn't be more specific), they don't know if it is benign or malignant and that I was now under their care and I'd get an appointment for an appointment with gynae oncologist, but that I'd need to have a complete hysterectomy, including ovaries etc. Waiting on that appointment at the moment.

Feel like it's quite a jump to go straight to hysterectomy as it could still be benign, unless they're just saying that so I don't panic?!

Anyway, very much in limbo land and hoping for more info soon! 

  • Hello ccla81

    you are not a fraud for posting here please don’t feel that, you are looking for advice and help from others that may have been in the same situation as you ! Just be reassured that there are people working behind the scenes to find out what’s going on which is good. The team needs to gather as much information as they can to help you, no one will tell you things not to make you panic, no one will lie to you or mislead you , it’s more a case that they cannot tell you things they don’t know x once you have your appointment things will feel much better as more can be told to you and a clearer picture of what’s going on will appear. The waiting is the hardest part of all but if your feeling overwhelmed please call MacMillan as they can help you navigate your thoughts and feelings x If you have a close family member or good friend to talk to that can help too and then there’s this forum which will have people who can understand how you feel and can offer advice or just relate to you which does make you feel better x 

  • Thank you for replying, I'm feeling a bit more settled now. 

    I had the call a week ago today and still waiting for appointment with consultant, I've had breast cancer previously and know the waiting is the worst.

    Hopefully have news soon!