Further treatment

[Emm77]

Hi ladies I had a total hysterectomy and appendix removal surgery on the 31st October, after my right ovary was previously removed in August for mucinous borderline stage 1a. I was wondering if I still needed monitoring, bloods or any checkups. Or is that is now? Has a anyone similar who could please share. Thanks em. Xx

[Cropcrop]

I would suggest speaking with your gynaecologist for the results of any histology results following your second surgery and to ask if there are plans for any further treatments for you.

I hope you’re recovering well from your surgery, take lots of care ❤️Xx Jane

[Emm77 in reply to Cropcrop]

Thank you for you reply. My second surgery has shown my remaining ovary had a 5cm cyst, multiple small cysts, my appendix showed it had shown past previous appendicitis but healed, and my uterus some fibroids. My specialist said that’s it now it’s all gone. But he said in August that a recurrence could end up anywhere.

I most wondered if anyone else had similar to me and if they were discharge or not xx

[Katmal-UK]

Hi Em . As Jane says you need to speak with your gynaecologist. I'm surprised you don't have a follow up appointment. If you don't have any such appointment then definitely call the hospital. I do hope your recovery progresses well. Kathy xx

[Mommoo65]

I would think your gyno or oncologist would have a maintenance plan even if only checkups or blood testing. I saw my oncologist every 3 months with bloods taken for 3 years. Now I see him every 6 months but no bloods are taken now. I am in the States so it may be different where you live but definitely check on that. But I was also 3b High Grade Serous so there's a big difference right there in treatment. Big hugs. Glad you got thru your surgeries ok!!! Jill

[charlie12]

Hi Emm

I remember your last post , so it’s good that you got the surgery you wanted. Do take time to get over this , two surgeries and a diagnosis such as this are hard to cope with.

As one of the other ladies said, if you are paying for this privately you will be seen more often. Bizzarely there is no standard for follow up. I hope that you have at least a follow up appointment with the surgeon.

I had a similar diagnosis back in 2010. There was a huge amount of confusion about everything and what would happen. Eventually it was agreed that I would be seen for seven years. In the NHS it seems that you are not now followed up with borderline, but that you can self refer if you have any problems. The chances of something coming back are very low. And many recurrences are picked up by the patient herself having symptoms such as bloating and pain and not by anything showing up on tests. The benefits gained should be balanced against the reminder about the diagnosis and the stress of chasing appointments and blood tests results and scan results.

Take care of yourself xxxx

[Emm77 in reply to charlie12]

Hi Charlie, thank you for replying. I saw my gyne on Monday to get my biopsy results, and he’s seeing me in a months time. But said I would need further checks due to removing everything. I live in Guernsey Channel Islands. We don’t have the same expertise over here. I’ve done a lot of research myself and with groups such as these. I am private and my gyne has been amazing and listened to me every step of the way with the research I have done. I am sure if I ask for regular scans and bloods he will oblige.

It is such a relief everything has been removed, after reading my biopsy. Although no signs of malignancy, it wasn’t completely normal so I really did go down the right path. As you say the chances are very low, but I wouldn’t be totally at ease after seeing him in a months time to never going back. Can I ask did you have ultrasound scans or ct when you had your check ups?

Em xx

[charlie12 in reply to Emm77]

Hi Emm

Because you go to a small hospital keep ontop of what is happening elsewhere. But no doubt being a private patient they will err on the side of seeing you. My Consultant was pretty clueless about borderline tumours, so I hope that yours is reasonably well informed.

They did ultrasounds and blood tests. I may have had an MRI scan too. The surgeon emphasized that the fact that it did not burst before removal was very good news. It doesn’t sound as if yours burst either ?

Take care xxxx

[Emm77 in reply to charlie12]

Hi Charlie thank you for getting back to me. My surgeon doesn’t really know a lot about Mucinous, I have lead him and he has been so good at listening. My tumour was contained to the ovary and didn’t burst either. Which is such good news. Did you get a recurrence? And has your checkups stopped now completely? It’s frightening how this affected me. It’s a really head spin xx

[charlie12 in reply to Emm77]

Hi Emm

That's great that the mass did not burst. Yes the checkups have stopped and , no I have had no recurrence. Because I had the same surgery as you , the chance of a recurrence is very very low, so the full surgery is nearly curative.

The stage you are now at is really really hard, you are not fully recovered from the shock diagnosis , a second major operation, the anaesthetic and hormonal issues. These are likely to be affecting how you are feeling. Getting better takes time and rest. You will begin to feel better gradually , but expect the odd little setback too. Don't be in any rush back to work either.

Take care xxxx

[Emm77 in reply to charlie12]

Thank you Charlie for your messages. I am so happy to hear you haven’t had any further problems

I haven’t been to work since July 12th. I am hoping to go back as phased return in the new year. I won’t rush back though.

Xx

[Jacqui1737]

Hi Emma how are you keeping since? I'm awaiting a date for I think the same as borderline malignant ovarian tumour already removed and uterus omentum and remaining ovary next. Did you keep cervix? I will ask today if luminous. God speed with recovery x

[Emm77 in reply to Jacqui1737]

Hi Jacqui, I am doing ok. My surgery this time was keyhole so the pain hasn’t been quite as bad a open in August. I am so tired this time round, that could be the lack of hormones or the two surgeries close together .? Lots of rest to recover.. He didn’t take my omentum but checked it, but removed everything else including my cervix. My cervix came back normal on the histology report. I was of the opinion as taking the rest out maybe as well take that to reduce risk there, if that makes sense. Let me know how you get on please xx

[Jacqui1737 in reply to Emm77]

My tumour is serious.. date set for mid Jan.keepung cervix atm.scared of losing me..

[Jacqui1737]

Op set for mid Jan.uterus right ovary and omentum, can keep cervix rest was already removed.

Will have vertical scar to above belly button.least I can make most of Christmas.take your time healing and lots of rest defo needed. Was told lot harder this time round longer recovery x

[juliamillen]

You’ve had major surgery so expect to be tired. I slept a lot after my hysterectomy. It took about 6 weeks to get over it. When I wasn’t sleeping I was watching telly. Hope you pick up soon.