Tomorrow is the Day - Expecting Bad Results

[coop1969]

After all the worry, I have started getting appointments scheduled related to my treatment. My most shocking one is that I have been referred to a Colorectal Surgeon to discuss my "Appendix Pathology". My medical oncologist has said he has already been talking to both surgeons about my treatment plan. It is feeling like I have both Ovarian and Appendix cancer. No idea if it is two primaries or metastatic. Will only speak with my gyn oncologist tomorrow for the first time. So terrified. No idea how I got here - was feeling fine and found the mass on my ovary because of my pushing to monitor endometriosis. And now this? I am so overwhelmed. Sad.

[Polina44]

Hi,

Sending love and strength for today. Can you take someone with you? You have to take one day and one appointment at a time. They have a plan and I hope by the end of today things are clearer for you.

Xx

[Doglover1410]

sending best wishes for today, it’s a scary time. If you can take someone with you, you don’t necessarily hear what is being said.

But hand yourself over to your team, ask questions, challenge why, and trust that they will get you through it all (which they will, but sometimes you will hate the very sight of them!!)

Xx

[Trickysite]

When I had my op (I am 4b high serous), they removed practically all my innards, including my appendix. OC can spread to the appendix. The pathology results showed it had not, but nonetheless, mine is gone. More uncommonly, my OC had spread to my stomach and I had half of that out in the op. You can do very well without an appendix, so if you have to wave it goodbye, just say good riddance. Not the worst place for it to spread to, but at the moment you don't know so let's keep our fingers crossed. Love, Emma x At the moment, I am doing well 3 years in.

[OvacomeSupport Partner My Ovacome Team]

Dear Coop1969,

I'm sorry to hear that you're feeling so overwhelmed and scared. Our support team are here for you. If you have a particular question, or just want to talk things through, do get in touch. You can give us a call on 0800 008 7054 or email [e-mail]. We can also arrange a 1:1 Zoom call if you prefer. We're here from Monday to Friday, 10am to 5pm.

Best wishes,

Alice - Ovacome

[coop1969]

I want to share my update with you all as I hope perhaps it can provide comfort to someone else later. I had my meeting with my gyn-onc this morning. It turns out that something very rare has happened to me. She said the tumor on my ovary was not as expected. It is a very rare Mixed Germ Cell tumor. They would not have expected to find this in a post-menopausal woman. So now they are trying to determine the right chemo for me. The second chapter is that my surgeon saw a tiny nodule on my appendix and removed it. But it came back to be cancer. Final pathology pending but they think it is a Neuroendocrine tumor. So I have two primary cancers. But both were found at Stage 1! Insane. Rare. But so much better than I thought would be the outcome of this meeting. Yes, I have a road ahead and I will be ultra vigilant as I am trying to figure out why my body decided to generate two cancers at the same time (am I doing the same thing somewhere else now???) but this is so much better that it was all caught early. Chemo next. Gulp. But at least I have something to fight. Thank you all for your support as I have navigated this. I plan to make my trip across the pond for Christmas shopping next year. Look out John Lewis and Fortnum & Mason!

[SuffolkJen in reply to coop1969]

Soo much better than you were expecting I’m sure. It’s a long road ahead of you I’m sure tackling 2 primary cancers but you will get through this and come out the other side!

You can breathe now & enjoy Christmas 🎄 xxJen

[Yorkiepudd in reply to coop1969]

In the grand scheme of things this is good news. The staging appointment is always a head meddler as so much hinges on it. I was also looking at possible stage 4 but turned out I had two primaries and both were stage 1. Those plans sound good too 🥰

[cmania in reply to coop1969]

Just chiming in here. I was also diagnosed with 2 primary cancers during the same de-bulking as well. Non Hodgkin’s lymphoma and Ovarian. For me, the chemo regimine only worked for the ovarian but later did radiation for the non Hodgkin’s. (Been 9 years in remission). You got this!!! 💪

[Skibot]

That’s great news (how weird to be talking about cancer as ‘great’ news) but you have to take all the positives, as you said you have a journey ahead but you will get through it, I’ve just finished 15 months of 3 weekly chemo and immunotherapy and can’t believe where the time has gone, I have lived a pretty normal life and not let it impact us too much, looking forward to the winter in Italy so life goes on! All the very best to you and your family xxx

[Sunsetime]

Hi, that’s so soo much better than you were expecting. Although you still have chemo to go, and I’m sure processing 2 primary cancers not easy it’s doable and such good news the cancer has been found at the earliest point . Chemo is doable and sure this time next year you will enjoy Christmas shopping more. Thanks for letting us know. X

[Emcee71]

Wow, what a shock (on top of everything else). That's incredible they found both at an early stage and are planning the very best treatment for you. Enjoy this Christmas, and dream of the next!! xx

[SopSinger]

I know this is a whirlwind at present, but please ask to be tested for Lynch syndrome, as bowel cancer (including appendix cancer) and ovarian cancer are both part of the Lynch syndrome picture, and endometriosis appears to be associated too. Sending hugs!

[nordic5]

Hi, if it's NET of appendix and would be G1 (very often) then You don't need chemo. Only (only, hm, I know, how it sounds) for OC. It's better to have two problems in Your case then one really big, ironic. Hugs.

[coop1969]

Thanks everyone. Yes, it appears to be a NET. Early. The kicker is my Ovarian Cancer is not "normal". Spent some time looking at the pathology this weekend. My Gyn Onc is sending me to the head of Medical Oncology since they don't know how to give me chemo for this. Because I appear to be one of around 50 post menopausal women since 1976 who have had what I have. "Mixed Germ Cell Tumor with Sarcomatous Transformation". It is like a garbage can of a tumor. And it is aggressive. Nothing found anywhere else. But they just don't know what to do with it in someone my age. If I was pre-menopause this would be a pretty positive thing. But alas, I am not. And in all of this I feel completely fine. It is insane how bad this is for someone who feels fine!!! Heading to the hospital this morning.

[Doggies221 in reply to coop1969]

Totally understand. Wow, feeling fine and early stage aggressive tumor that they don’t know how to treat. Why do you say that it’d be clearer if you were premenopausal? Wishing you the best of luck!

[coop1969 in reply to Doggies221]

Germ Cell Tumors are highly treatable. In pre-menopausal women. They do not know why post menopausal so so poorly.

[Swimbuddy in reply to coop1969]

I also have a germ cell tumour, called a yolk sac tumour, don't know if that is the same as yours. I'm also post menopausal. In fact you are the first lady I have come across with a germ cell cancer. I was being treated at Charing Cross Hospital but now being treated at my local hospital. Apart from the chemo side effects I have been living a good life. Long may it last!!