Not Cancer

[Susiecottonsox]

I was diagnosed with Ovarian cancer in January, I have since had the op with omenthum, lymph nodes, overies and cyst removed. I have now been told it wasn't cancer after all it was a benign cyst. Now I sk myself have I had vital parts of my body taken from me?

[Kkaren]

Lucky you !

[Newbie_2020]

The very good and most important news is that it isn’t cancer. May you always be blessed with this peace of mind. Only your surgeon can answer this question for you. Usually, surgeons can easily recognise cancer. They take out all affected and/or risk organs, in your case. They send samples to labs. This is perhaps when it was confirmed it wasn’t cancer.

Most if not all of those who had a debulking surgery had all these organs that you have mentioned removed and even more.

What has been removed is not considered as vital. You can easily live without them. Take care.

[Susiecottonsox in reply to Newbie_2020]

Thank you for your very positive reply

[Lyndy]

You are lucky... very lucky! I think many of us would give any non vital organs to be free of this menace.. but yes your oncologist has some questions to answer.

[Susiecottonsox]

I'm sorry I don't mean to sound so ungrateful I am immensely grateful to the team who took this monstrosity out of me even if it didn't prove to be cancer, its certainly stopped a lot of pain I was getting. I was just worried about the effects of losing the omenthum and lymph nodes, but I'm sure I'll be fine. Lots of love and luck to all you ladies xx

[LesleyGB in reply to Susiecottonsox]

Hi. So pleased it wasn't cancer - I am sure no-one felt that you were ungrateful (though I felt very jealous!). I had my omentum, ovaries and fallopian tubes removed and doesn't seem to have affected me. My lymph nodes were left.

Hope you stay fit and well! X

[Kayadiana]

Hi Susie. Just to add - I had a very large ovarian cyst, discovered almost by accident, 6 years before oc (stage 3) was diagnosed. It was left to resolve itself and I didn’t give it another thought. But i now suspect that it was one of the first manifestations of more serious disease and I wish it had been dealt with at that less dangerous stage. Having had a similar op + chemo, I do worry about the longer-term effects of the negative impact on my immune system, microbiome etc, and I really wanted to preserve the omentum, but apparently cancer loves it (fatty tissue), so there was no choice.

If I were you, I would be asking some pretty searching questions about the extent of the treatment, but it sounds as though something was going really wrong. And now you have at least dramatically reduced your chances of oc.

[lesleysage]

Hi Susie, like everyone else, continue enjoying your brilliant diagnosis - phew!

The lymph nodes all down my left side were removed during my two surgeries and the side effect, for me, has been slow development of lymphoedema, which crept up slowly over the years since the last operation in 2013. So, keep your eyes open for swellings in your legs, ankles, feet or genitals and ask to be referred to the specialist Lymphoedema for your NHS region.

If you do develop it, and not everyone does by any means, look at the Ovacome webinar on it and one of their monthly information topics. Of the exercises, if you enjoy swimming, this is the best for helping slow down/moderate development of lymphoedema and I also wear compression stockings, pants and have a block of wood to prop up the bottom of my bed by 1" to help overnight movement of the lymph.

Warm wishes for enjoying life. xx

[Eriksendi]

I had an ovarian cyst that was twisted causing pain when I was 48 and had the ovary and tube removed - non cancerous. 10 years later I am diagnosed with stage 3b. I wish they’d have taken everything out when they did my first op and I might not be in the position I am now. I’d definitely ask questions but it could just have saved you from a serious problem in years to come. Hope you get the answers you are looking for.

[Jacky5]

I'm really pleased for you that you dont gave ovarian cancer after all.We all understand what that initial diagnosis must have put you through.

I would imagine very mixed and high emotions for you feeling very lucky in one way but possibly cheated? In another.

I dont think youve lost anything vital , assuming you werent planning on having a baby.

Lymphedema is a consideration as mentioned by Lesley sage.

Your consultant will be able to answer all your questions.

Take care

Liz.x

[Brum1966]

I am delighted for you that it is not cancer, as for the feeling about the surgery it is very hard for me to look at this objectively as knowing what I am going through I would be overjoyed it was an error but maybe I would think differently if I was in your position. This probably makes no sense to you I'm sorry but for your own peace of mind hold onto the massive positive that you are cancer free thank god xx

[bluepeterella]

I was actually quite shocked to read that you have been through such a huge operation for no reason. Yes it's lovely that you have no cancer diagnosis, but I would want to know what led them to remove so much if no cancer was present. I remember the surgeon visiting me on the ward to tell me he'd removed all visible signs of cancer - which makes me wonder why a surgeon would remove parts which had no visible signs? All sounds a bit odd, and very stressful for you to have been through all this.

[Ruebacelle]

Newbie said it all but I have one question did they do an exploratory surgery before the big cut? If they are not sure and since OC is rare in france they do modest surgery take biopsies and go from there. Be grateful you are in the clear. Hugs from france

[Lizzieanne in reply to Ruebacelle]

How interesting that OC is rare in France, I wonder why

[Ruebacelle in reply to Lizzieanne]

It's rare everywhere. 6x more breast cancer that's why we are so far behind..rarely diagnosed until it's 3 or 4 stage few trials because not enough subjects

[Sashay2020]

Not having cancer is certainly a tremendous relief for you. I remember hoping before surgery that my omentum would not be removed, but two small “spots” had shown up in the omentum on the pre-op CT scan. My surgeon explained before my surgery that I would have a hysterectomy and the cysts on my ovaries removed. She explained that a frozen section would be sent to the lab in the hospital for immediate review. She said this review is correct 90 percent of the time. If it came back as cancer, my omentum and other parts would be removed. Tissue would be sent away to a lab for confirmation. Maybe you are in that ten percent. I hope you heal quickly and smoothly from your surgery. Sashay

[Tillymint61]

You need clarification from your oncology team why such robust surgery was undertaken without other evidence. Answers to what was your CA125? did they do any sort of biopsy on anything etc ?. You need to find out. It does sound as though you are better off definitely without the 'cyst' It may be the cyst even when they opened you up looked potentially suspicious and they've gone down prevention at the time of major surgery rather than waiting on lab results and then putting you through full debulking surgery at a later date . As long as fertility isn't an issue (you dont mention your age) You are in a safer state without what they have taken away. As others have said organs that we can live without.

[Cropcrop]

Hiya, I completely understand your question. The upside for you is that you have the peace of mind that you won’t go on to develop OC but I understand your disquiet that you have had a procedure that maybe wasn’t totally necessary with the side effects and repercussions surgery inevitably brings. I would imagine the surgery wasn’t carried out without all appropriate tests and scans being carried out that lead to the conclusion you likely had cancer and they erred on the side of caution. So many of us here had the same or similar procedures carried out and are still here to tell the story and living full lives. The flip side is many ladies had to fight really hard just to get investigations started and many were misdiagnosed or not diagnosed at all to their long term detriment. Some ladies were eventually diagnosed at late stages and sadly succumbed so I’d say take the clear diagnosis, embrace it and live and love your life lovely ❤️Xx Jane

[Pianoplayer731021]

Hi Susie, happy to see that you don’t have cancer. What a relief for you. You can easily live without those body parts, as I am. Take care, Donna

[Beverleyt]

Hi Susiecottonsox is my mum so I’ll reply to her as she’s been in and out of hospital after her op and not feeling well with sickness. Her CA125 was 248 so not sure why that was high. She’s 73 so passed her baby making days and had a hysterectomy in her 30s. They left the ovaries behind.

We now need to get to the bottom of this sickness when she’s 3 weeks post op. They said it could be fluid?