My Ovacome
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Update from "New Here and I'm Terrified"

Hi everyone.

I thought I would come back and give you all an update. Thank you so much for being supportive this past week. You were my first stop on the journey, when I was terrified and didn't know where to begin. Thank you for calming my fears and helping me find resources.

My appointment yesterday was long, but I got a lot of good information.

I liked the doctor right away. He was a realist, but also very positive. That made me feel better. The doctor confirmed the biopsy shows clear cell ovarian cancer. He was honest about this being a rare and aggressive type, the higher chance of recurrence, and all the bad stuff that came with it. However, he ended with, "And that's the last time we'll talk about this unless it needs to be spoken of in the future. Our goal is to cure you so you can move on with your life."

He also believes this is stage 1C, but we won't know for sure until after surgery. The next step is a CT scan and then a total hysterectomy with debulking sometime in the next few weeks. After surgery the plan is radiation if it stayed confined to the pelvic area and chemo if it spread.

I'm still nervous, but my biggest prayer right now is that it stays stage 1. He says the earlier stage improves my chances greatly no matter what the type. My church family has stepped up big time with prayer, giving me good books to read, and already developing a support team for when I need the help.

One day at a time.

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Hi, I think I missed your previous post. I'm glad you have found support here and you have support via your church family. Your dr sounds brilliant. I can imagine how nervous you are, regarding the surgery etc but take it from the world's biggest wimp, you can and will get through the op and it won't be anywhere near as bad as you are imagining. It'ds the fear of the unknown and our minds tend to go in the direction of the worst possible pain etc..... it's not like that. Do stay in touch. Take Care, Kathy xx

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Hi lovely, well now you know what you’re dealing with, I personally think it helps when somethings got an actual name so you know what you’re up against.. Your initial diagnosis is the same as mine was, surgery will confirm this as you rightly say.

Clear cell is more rare, we make up less than 5% of ovarian cancers so that could mean we’re actually quite special 😉. Your doctor sounds nice and you like him and have confidence in him so that’s a big plus.

Like Kathy says the surgery isn’t as bad as we think it’s going to be, it is a big operation and you will need to look after yourself but we've all been there and are here to support you and offer any advice you need, please feel free to ask us anything at all.

Let us know once you get your surgery dates and keep us up to speed.

Take lots of care and try not to worry too much, big hugs and love ❤️Xx Jane

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Your doctor sounds fantastic. It’s such a worrying time but now you have a plan you can focus on that. It’s a big operation but doable. It’s good that your church are developing a support team for you as it’s important not to overdo things for the first few weeks.

Take care!

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One day at a time with an excellent doctor whom you trust and good caring support around you sounds like the very best plan.... Do stay in touch, very best wishes, Sxx

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Your doctor sounds wonderful! May I ask where you are as I asked about radiation but was not given any?

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I am being treated at the University of Chicago in the US. They have been wonderful so far.

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Good morning 'Quiggs',

Fingers crossed your clear cell is stage 1. Your doc. is right that if all of the clear cell can be removed in the operation, then your chances are good.

Just in case yours turns out like mine did in May 2011, to have sneaked into the lymph nodes and hence become Stage 3, then stay in touch. Mine recurred in Jan 2013 and I was told by my oncologist it was now terminal but a second opinion at Queen Charlotte gave me a surgeon, in a top flight theatre with a superb team around here, who removed the new tumours which were dangerously close to my aorta and renal artery. I then had dose-dense regime of carbo-taxol + avastin. I've remained in remission since then.

My GP's advice was the best for me, "Your job is to grow healthy cells; leaving the killing of the 'b-----r' to the medics. This way you bring us the healthiest body you can and that increases our options." This stays with me every day, however tired I feel.

Let's really hope you have stage 1...but if not, please do ring Ovacome Helpline (freephone 0800 008 7054) and they will advise you on the hospitals who are 'geared up' to deal with second opinions involving advanced radical surgery.

Goooood luck. Warm wishes for today.

Lesley

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That's what I'm most scared of. I just want the surgery over with so I can know for sure.

I'm not sure what resources I have in the US, but I'm sure I can get a second opinion from somewhere. We have a lot of big research hospitals and cancer centers to tap into.

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Hello again Quiggs,

I'm sure you are scared; I don't think either of us (my husband or me) will ever forget the impact of realizing this is not a nightmare but actually happening to us; even though it was different for both of us.

The interim results of the radical surgical approach I had was reported to the American Society of Clinical Oncologists in June this summer; it is called the DESKTOP 111 trial.

Your US research link is clinicaltrials.gov/ct2/show... You will see it was a world-wide trial and although I was not part of the trial, the surgical team here at Queen Charlotte's in London followed the guidelines laid down in the trial to evaluate the suitability of the tumour activity and my body's health to decide if surgery could help me or not.

This may give you a way of finding people who could help you further if needed.

Also, I know Ovacome is based in London, but they do have contacts across the world and through their network, may, just may be able to help you locate a second opinion if ever needed.

Finally, I really, really hope you will find it is stage 1 and therefore will not need any of the above.

I think the idea of encouraging your mind to think of the detail for Christmas, as suggested by Kim (Purple-Iris) is a lovely way to balance our this horrid time.

Take care,

Lesley. In Lincolnshire, UK.

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Hi

So pleased your Oncologist is on top of things and you feel a lot calmer . He sounds fantastic and it is so important to have a good relationship with the team treating us and have confidence moving forward . Glad you also have the support of your church family .

Hope the further scans go smoothly and you get a surgery date soon. Try and keep busy before your surgery with some Christmas prep and check you wardrobe for some comfy loose clothes .

Keep in touch . Love and prayers .

Kim x💜

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Good luck with your upcoming surgery and treatment, fingers crossed you are stage one xx

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Hi - I am in Chicago and had stage 4 OC but am now NED. Let me know if you’d like to talk. The support of your church is awesome. My faith and prayers from others helped a lot as staying positive is important. I was treated at Prentice Women’s hospital in Streeterville. If you still want a second opinion I’d be happy to give you my Dr’s name. She is head of oncology/gynecology at Northwestern. This forum helped me (even though I didn’t post anything until now). Reading posts on what to expect during and after surgery helped me a lot.

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