Do I don’t I - advice needed xx

[Emm77]

Hi Ladies. I am 42 and had my right ovary removed a little over 2 months ago. It was 22cms in size. The biopsy came back at a Mucinous borderline Ovarian tumour stage 1a. My specialist has given me 2 options. To have a total hysterectomy and appendix removal or monitor with bloods and ultrasound every 3 months. I almost wish he would tell me which as I really do not know what do to. Can anyone with the same tumour and stage advise me what they did please? I am due for my surgery next Thursday and I get days when I want everything gone to reduce the risk, then think do I need another major operation. Any information would be greatly appreciated right now xx

[27-359]

Hi. Personally I would have the opp, as I would want to know that the possibility of reoccurrence was gone. It is hard to opt for something that might not be necessary, but I would always be worried that it might come back.

Jenny

[lucy72]

Hi Emm77

We have such similar ‘histories’. My right ovary was removed, 23 cms, 1c. I was 43 at the time and I’m now 46.

I was not given the option of hysterectomy and so I’ve been having scans and bloods for past three years.

Doing it that way has been fine though I get super stressed out about the scans (now every 6 months).

My consultant didn’t want to induce early menopause with a surgical hysterectomy but in the last year I’m all over the place with my periods and I think I’m perimenopausal.

My opinion therefore is, have the op. What you’ve been through is a massive shock and though it’s been caught early, you may find it impacts your life more than you imagined psychologically.

Having the op may save a lot of stress.

I’m finding a lot of my perimenopause symptoms are similar to typical ovarian cancer symptoms so it’s caused me a huge amount of worry. Plus, after my 5 year watch period is over I will have to still have a hysterectomy so if you’re similar, you’ll need to have it at some point. I think I’d rather have had it when I was going through everything and off work, to get all of the ops out of the way and to just be able to get on with life.

Lucy x

[mizpurple]

Hi, Emm: I too am one of the mucinous group. I was first diagnosed with similar size masses on both ovaries as stage 1, but since I was 57 at the time, it was clear that hysterectomy was the way to go since I was already through menopause. You are quite a bit younger. Those extra 10+ years for you to continue to get the benefits of your natural estrogen might be worth taking the watch-and-wait approach. Have you consulted your gynecologist about the decision you are facing? Are you otherwise in good health? Is your sex life still active? Do you have a family history of cancer? I think I would also consider any other specific health risks you face. For example, estrogen provides protection against heart disease in women, if that kind of thing runs in your family. A middle course might be to do the monitoring for a while and see how it goes and how you feel about it. You can always choose the hysterectomy later. But if you are a worrier who will find the constant monitoring stressful, you might choose to have the hysterectomy now.

[Emm77 in reply to mizpurple]

Thank you for your message. I am single at the moment so my sex life is none... I have 2 teenagers, and I do worry a lots every little niggle I get on my left side (good side) I panic it could be starting there. My gran died of bowel cancer that is the only cancer whic runs through our family. I am feeling well, my last surgery was 8th August and I feel I am not pretty much back to normal. I am still very constipated and get a bit sore when I do too much. I am still off work. Haven’t returned yet due to waiting on this xx

[Anniellie]

Hi there, I’m so sorry to hear your news. Personally I would say having seen the speed at which my mothers progressed from a complicated cyst to her now being stage 3c Mucinous OC and fighting for her life, I would have everything out as soon as is humanly possible. If anything progresses with Mucinous, it is extremely aggressive and there are far fewer treatment options. Good luck with your decision xx

[Emm77]

Wow thank you ladies... I now feel why would I contemplate this decision. I am a single mum to two teenagers and clearly I want to be around for them as long as possible. Xx

[TarbonNZ]

I would go with the whole lot. I have stage 3c ovarian high grade serous.. I had a partial hysterectomy in my early thirties, and because of my age they did not remove my ovaries etc. in my early forties I had an ovarian mass removed which was benign, however they left the other ovary so I did not go into menopause. This did not work, as I went straight into menopause. Eighteen years later I ended up with ovarian cancer which they think started in the Fallopian tubes and then the ovary. The one useless one I had left. If I had had the lot taken out initially, I would not be in the position I am now, with incurable cancer and soon to start third line treatment.

[Cropcrop]

You should take the surgery option, to my mind you will then have taken the best step you possibly can to try to make sure your current situation doesn’t develop into something it doesn’t need to be. At the minute you have the choice, however, if your situation changes from borderline to actual Ovarian cancer it becomes a much harder ball game with much bigger implications. Hindsight is a wonderful thing, we have had ladies here who have looked back and wish they had taken a different path once the disease becones a reality.

The surgery is a big one, the thought of it is really really scary but it’s nowhere as bad as you most probably think it will be and recovery is easier without the possible threat of chemo hanging over you.

I hope you make a decision you are happy with and that you go on to be healthy and content.

Let us know how you get on, if you need any advice for both the surgery and the recovery just ask, we’re all here for you lovely ❤️Xx Jane

[Petrolhead]

Croptop has given a good answer. I was 1C1 mucinous. If it progresses to mucinous from borderline then a lot more difficult to treat. This sort of thing messes with your head as well. Every twinge and every scan/monitor is stressful. It is difficult to make these choices as you feel the medics should advise on the best option.

What do you want as a result of the op.

Peace of mind but with menopausal symptoms which can be lived with. You will have to go through it at some point anyway. (I was lucky and had no symptoms at all) then go for everything out.

Monitoring at regular intervals and probably stress at each monitoring point. Wondering if any normal pain , discomfort etc is the OC.

In your position I would have the lot out to be sure. Some women feel that their female bits defines them as a woman. You might be one of these- your choice.

Please let us know how you get on.

Best wishes

Fay

[Emm77 in reply to Petrolhead]

Thank you for your reply. Since I found out it was mucnious borderline I have said I want it all taken out. The past few days I have been rethinking. I’m not worried about it all going I no longer need it. I’m worried about going back to as I was just over two months ago not able to do the things I am now. I think it is all so fresh from my last surgery. I am worried about surgical menopause. He has said this time will be key hole not a massive vertical cut like I had in August. I have been off work since July 11th when they found the pass. My work have and are amazing and totally understand if I have more surgery that I won’t be returning for a while yet. Reading everyone’s stories had made me question myself why would I risk leaving it all in. Thank you again xx

[juliamillen]

I don’t like having to make the decision myself either. I’ve just had to decide whether or not to restart chemo. I am not the doctor. Hope you feel you have made the right decision

[Emm77 in reply to juliamillen]

Oh Julia I am so sorry to read this.. It really sucks this whole thing! I am feeling more positive about going to surgery now after so many sharing their experiences with me. Thinking of you xx

[Caroles1]

Hi Emm77,

I was mucinous 1c and had horrendous ascites and 6 months of chemo, I am ok but the worry of a re occurance is always there.

If I had the opportunity as you do of having a full hysterectomy as a precaution to stop getting to the place I was in, I would have grasped it with both hands.

I would also consider my teenagers, they still need you(although they wouldn’t own up to that), it would be a re assurance for you.

Just my slant on it, best of luck with your choice

Carole xx

[Rachelwu]

I would have it taken out instead of watch and wait. I cannot imagine going through scans knowing the tumor is there and not knowing when it is going to become ugly.

Best wishes to you, and take care!

Rachel