New to this this forum although I have used the forums before as my husband had stage 2 tonsil cancer in lockdown (has the all clear now) and found it in a way reassuring. Trying not to turn this into a monologue.
I've been bleeding since July last year (already gone thru menopause and too old to be having periods), had a total hysterectomy in Jan (one month ago so still off work recovering, sailed thru that and have healed really well) yesterday had follow up gyne...I knew, when you hear the sentence 'you can bring someone with you' as had heard that previously with hubby. Nothing picked up in earlier hysteroscopy (wow that is painful) but they biopsy everything when they do hysterectomy. Gynecologist advised rare ovarian cancer found in left ovary and small amount in uterus and has booked MRI & CT scan for thursday so he can get it to team meeting before friday. I did enquire if it would be chemo and he said he thinks would be radio or hormone treatment as everything has been done backwards (hysterectomy has already been done)
Don't know what stage as no results or oncology appointment yet. I have grown up children but myself and hubby have decided not tell them
until after Monday as no treatments confirmed yet. Think the gynecologist was surprised I didn't break down and I listened intensely and had questions (but as I've said I've already been in this
situation and hubby said when it was him as soon as he heard the word cancer he switched off from the rest of conversation, I used to take notes). I'll keep updating as the journey begins but for me personally the hardest bit is telling the kids.
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Of course Amanda. I have been having horrific bleeding (10yrs post menopause). A fibroid was found on ultrasound in womb and as I was so drained and bleeding which never stopped for more than a couple of days hysterectomy was last resort to stop bleeding. It wasn't until biopsy post surgery that the sarcoma was found, I'd had a biopsy prior on fibroid and womb lining nothing detected. I've never had a CA125 test. Think mine is more a mucus type than mass that's why not picked up on early ultrasound. Monday is visit at Sarcoma unit (Royal Marsden). So that will be 1st visit to any type of oncologist. I'll update on outcome in week sometime.
Update....Visited Royal Marsden Sarcoma unit (four hours - long day) They confirmed high grade ESS (Endometrial Stromal Sarcoma). No treatment required but because it's high grade I have to have CT's every three months for next two years (appointment already booked). Bit of a drag to get there but the consult after will be done by phone which saves a second trip. Time to book a holiday.
Hiya I'm really sorry to hear ur story I have the same and I'm under the Royal Marsden hospital in Chelsea..
I really hope and pray for u telling the kids I no its the worst feeling in the world telling ur kids mine are still very young and don't really understand .. but its hard I'm with u on that one
Just remember that ur kids love u and they are gonna be there no matter wot life throws at u and ur hubby ur kids will pick u up and pull u though it ..
I'm hear if u ever wanna chat . And stay strong ur not alone
We got this
I'm now 15 months post op... unfortunately latest CT/PET scans showed that one of my lymph nodes has cancer, so tattooed up and have started Radiotherapy at Royal Marsden. I am determined not to be bamboozled by medical terminology and question everything (consultant is always amused as I'm really clued up. He describes me as pragmatic). They have shown me the scan and as usual I analyzed every part as we went through the scan. Only one orange dot (sarcoma). Back again tomorrow.
Hey hun . I'm really sorry to hear this news . I really hope today's appointment goes well . Your in safe hands . It's soo sad that it has come back knocking on the door again!!! why why why!!!! . Just remember you are strong and you will kick cancer back and show it who's boss . Doctors always think we know more then we do and it's so hard to understand the terms how they speak about sarcoma cancer why can they not just tell us in a way that we understand more .. ask as many questions today I don't no what time your appointment is but you got this and let me no how you get along please. I will be thinking of you hun and you no I'm always here if you need a chat. I'm in the Royal Marsden on the 2nd of June if your there I can always come see you for a chat . X
Hi Carly, hope you & family are well? No consultant today just mid-way through radiotherapy. Lost all my holiday entitlement last year for appointments & scans. I appreciate that I'm getting treatment it's just the travelling I detest took two hours again each way. Mentally & physically I am absolutely fine and I'm NOT lying about that. Consultant call due Thursday but I think he'll probably cancel that as will be end of radio and no new scans taken. I just needed to vent yesterday. I can see from your bio that you'll have scans for a long time. THAT will be my latest question to them. Stay safe xx
Me and family are good hun thank you for asking . hope you and your family are doing well .. Im soo sorry I never knew you was doing radiotherapy after everything you have been though already it's to much hun and traveling two hour Wow that must take it out of you it's not fair on you . Your work should have a better understanding that u need time off work when u go to hospital it's not your fault .. and rant all you like hun get it off your chest best way x
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