1st Recurrence 🥺: Hi everyone. After being... - My Ovacome

My Ovacome

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1st Recurrence 🥺

Kouyate profile image
Kouyate

Hi everyone. After being diagnosed 3c in October 2016 and the usual debulking and chemo I've been disease free since until now 🥺 My checkups were every 4 months and had ca125 tests done at everyone and they were always around 10, until my last few which went to 15, then 19 then 24 at which point I expressed a concern so consultant sent me for a scan and I got told on Friday that I've got a 1.5cm peritoneal nodule, and she is going to speak to surgeons next week to see what to do. All she kept saying was how sorry she was and gave me no clue as to is it treatable, or I'm screwed! So I'm in bits. I was just getting to the point where I was about to go onto 6 monthly checkups and actually started to think I'd beaten it and now I feel like I did in 2016. Just so scared 😢

24 Replies

Hi Kouyate,

It is the waiting for results etc that is always so horrible, but please don’t despair. It’s tough but you’re not alone on this forum.

I don’t think you’re oncologist has been very helpful and she really should have given you more hope. There are so many options - maybe surgery or maybe chemo to shrink the nodule and then consider later whether surgery is the best way forward. There are many chemo drugs plus drugs like Avastin. There are also trials, if the standard treatments don’t provide any options. Just don’t give up!

I was diagnosed as iiic in October 2016, I had neoadjuvant chemotherapy then debulking then more chemo. I’ve always been considered palliative only but I did get to be in remission until my December 2020 CT scan showed progressive disease with enlarged lymph nodes and a lesion on my spleen which had grown from 1cm to nearly 3cm, which is apparently bad.

So far surgery hasn’t been considered but I am coming to the end of 12 weekly infusions of Paclitaxel (3rd line) and I’m waiting to find out what my 2nd May CT scan reveals. I hate the waiting but I am optimistic that the Paclitaxel has shrunk the cancer. I will find out on 26th May.

The waiting game is a bigger pain than the back ache I get from the enlarged lymph nodes. Fill your time by making lists of questions to ask your oncologist - and find some activity to distract you ( I started an illustrated journal). I have also applied for a copy of my scan report as I find it helpful to have my own copy when I discuss things with my oncologist.

Maybe you could get in touch with your nurse specialist and tell her how scared you are and ask her what options you have before your consultant’s appointment. Maybe you could seek an appointment with a counsellor to talk about your fears. You could also speak to an Ovacome admin person for advice.

You clearly need a hug so I’m sending you a virtual one 🤗 or 2 🤗🤗. I wish you the best of luck 🍀🍀 and please keep us informed of how things are going for you.

Iris 😊

Hi there,

I’m so sorry to hear of your recurrence and honestly can understand how upset you must be. After so many years in remission you must be feeling down about this news, but take hope from the fact it sounds like they have found it very early, it’s a small nodule and your ca125 is still very low.

Hopefully simple surgery will be an option to sort this out for you, but even if it is chemo, youve done it before and you can do it again and you can get back into remission. Your onc doesn’t sound very confident so I would consider another opinion if you don’t feel they are doing their best for you then fight for a 2nd opinion.

Stay positive and take comfort from the fact you’ve had a long remission, you can do this!

Sending hugs to you Xx 💖

Hi I know how u feel right now. I was diagnosed 3b In 2007 and Ive had 2 recurrences. Dont write yrself off.... both times chemo took me back into remission and clinical trials have kept me there..... currently 7 years 9 months NED albeit on Olaparib. There is hope albeit it wont seem like it to you right now. Big hug. Kathy xx

I know how you feel I was diagnosed in Jan 2002 had my first recurrence in May last year. I truly thoght I had beaten it after 18 years. Mine had spread to bones and liver and various lymph nodes. I have done my six treatment of chemo and no signs of bone mets am on Rubraca now. Will have PET scan beginning of June to see if its working. So agree with other ladies perhaps speak to CNS nurse, or Macmillan to try and help with the anxiety. It is the waiting all the time that truly gets to you. Wish you well xxx

Hi thereI was diagnosed 3b in jan 2014 and was clear until oct 2018 then i had a recurrence. I had surgery in London to remove what turned out to be a single lesion which was 8cm. I had chemo again and i am still clear. I too had and have a low CA125 and i am aware that even a small change for us is significant (that is difficult to explain to GP’s sometimes). So stay positive and i feel the fact she is talking to the surgeon to me means she is hopeful it can be removed and after ?? Chemo you could have another long remission.

There is good evidence now that second surgery is very effective in some people.

I strongly believe a positive attitude helps with healing and gets you ready for a fight xx its only round 2 not the final bell!!! Interestingly my CA125 settled around 11-13 after my second op when it was always 7-9 after the first op.

Good luck

Diane

Kouyate profile image
Kouyate in reply to Bettyxxx

Hi Betty, I love that "it's only round 2 not the final bell" ❤️ I guess that's what I wanted the consultant to be like. I know they can't give us any guarantees but I at least wanted her to take the lead and guide me through what's going to happen instead of leaving me feeling so lost x

Bettyxxx profile image
Bettyxxx in reply to Kouyate

My husband’s theory is they just love to give bad news, good news is less interesting 😂😂 Tbh i changed (within my team) to a different consultant as I couldn’t cope with his- i want to say negativity but I actually mean apathy, and i never looked back. I would politely offer that as feedback when you go in again as i sometimes think they get lost in the moment and go into planning mode- speak to surgeon-check her bloods etc and forget you are sat there in limbo.

Lots of love

Diane

SUE7777 profile image
SUE7777 in reply to Bettyxxx

Hi Betty, I had exactly the same problem with my original onc. liberal with the bad news which turned out not to be true and very economical with the good news so I also moved on. All the best Sue xx

SUE7777 profile image
SUE7777 in reply to Kouyate

Hi Kouyate, You've just got a bad communicator there, the fact that she/he are looking at different options is a good sign, so hang on in there and all the best Sue xx

Hi Kouyate,

I'm so sorry to hear you are scared, I know that horrible feeling, but hope I can make you a little less anxious.

I also had retroperitoneal node recurrence and managed to have it surgically removed with no further treatment. That was in 2018 and touchwood, currently NED. My initial OC diagnoses (stage 3) was in 2015.

My node was confirmed by PET scan and rising CA125. Is it a PET scan you were sent for? I believe that is the most accurate re suspicion that it is a cancerous node? My node was about 3cms.

It was a GP that gave me the news of my rising CA125 and she also, just kept saying I'm so sorry. It was utterly devastating to hear these words and not at all helpful. So when I went for my oncology team appt the following week, I was expecting to hear the worst, but on the contrary, they were much more upbeat and after seeing my scan offered surgery.

Hearing you might have a recurrence is a real kick in the guts after so long and to be honest, for me, it was harder to take. I had also just gone onto 6 monthly checkups.

The only other advice I can suggest is (apart from the PET scan) is discussing if radiotherapy is an option. I was told a couple of years ago that I could have possibly had that instead of the surgery (this was by a top gyno. oncology surgeon who was away on long service leave when I had my recurrence and nobody else had mentioned it to me), but might be something also to consider?

Sending you a big hug all the way from Australia! Ruth xx

Kouyate profile image
Kouyate in reply to ruthg55

Hi Ruth, no it was just a CT scan, But between us we decided to have another scan because my CA125 has always hovered around the 10-12 mark, but the blood tests for my last 3 check ups my CA125 had increased to 15, then 19 then 24 and to me it just set alarm bells ringing. But even then I though it was maybe other factors as I'd had the flu jab before one of the blood tests, and my first covid jab before another. But thank goodness I had the scan otherwise I would have been none the wiser x

Remember this can be a manageable disease. Just one small nodule they may remove or a new round of chemo. Think of the long period you had to recover and gain strength...hugs from paris

I was diagnosed 3C in February 2016, and was told at the time it was treatable but not curable, and to think of it as a chronic disease. I had my first recurrence the following year when my CA125 went up to 200, which was treated with further chemo and I've been on Niraparib since. My CA125 went up to 35 last September and a scan showed a 2cm tumour which stayed stable until February when it was joined by an enlarged lymph node. That too settled down and my scan last month showed little change though my CA125 is climbing steadily and is now 127.

At no time has my oncologist said it's untreatable - she's mentioned both surgery and chemo but is keeping me on Niraparib while my symptoms are minimal.

I was devastated when I recurred the first time, more so even than at initial diagnosis, as I felt fine, so I understand how you feel. In 2017 surgery was rarely considered for a recurrence, but things have moved on, as have the other treatments, so there will be more than one option for you, I feel sure.

It is absolutely natural to be scared. The support from the ladies on this site has really helped me cope mentally, and I hope it will for you as well, as we can openly discuss feelings and fears that we don't want to burden our families with. x

Bless your heart. So tough & understandable you’re feeling rubbish about this. Hope they find out a plan for you soon so you can do all you can to get through this. Xx

coming out of remission after years is truly shocking and scary. I was diagnosed and treated in 2008, and didn’t have a recurrence until 2014. Like you , I was going to start spacing out my 6 month check ups more, but I’m glad I didn’t, I had another reoccurrence in 2019. Luckily, with today’s treatment options I am on a maintenance therapy that is keeping me going. Please don’t lose hope, there’s so many treatments and medications available today , if one doesn’t work, Your Onco will try something else. I am praying for you and understand your anger, sadness, and disappointment. Hang in there! 🙏

Stuee01 profile image
Stuee01 in reply to Leniko

Hi Leniko,

Thanks for sharing your encouraging story! May I ask what stage you were at diagnosis?

-Stephanie

Yes, I was 1C in 2008- had Chemo, hysterectomy. In 2014, OVCA appeared on a muscle in my back (psoas). I had radiation for that one, and chemo. In 2019, that tumor (inoperable due to surg risks) grew, had some Chemo, I have been on maintenance Avastin since (every 4-6 wks). Tumor not showing active signs. Metastasis can occur at any stage, but Treatment options are many. I’m praying you will find the right one for you. ❤️🙏

Mammi profile image
Mammi in reply to Leniko

That’s interesting Leniko Was the tumour in your back found through routine checks or did you return due to pain in back 🤔I was 1c3 now 18mths in remission & feeling good but suffer back ache a lot.I put it down to gardening but husband thinks I should get it checked.I am still in 3mthly observation so surely it would be picked up? Dee x

Leniko profile image
Leniko in reply to Mammi

My Ca125 went up and a CT Scan Confirmed the tumor on my psoas muscle. I had no pain back there, and was quite surprised to hear that I had a tumor. Wishing you good luck.

So sorry to hear this. It sounds like they just need to get their ducks in a row to come back to you with your options. They hopefully won't take long.xx

I agree with all other ladies that the MDT need to put together a plan for you and I am confident they will make one. I also agree that the oncologist needs to work on communicating a clear message to you. I'm sure he/ she had no intention to cause upset but they do need to understand how awful uncertainty is and how important to be clear in the plan. My understanding ( although I may be wrong) is that if you have a long remission there is a generally optimistic prognosis for further long remissions. Hoping all goes well for you xxx

I'm afraid I can't offer any wisdom, just sunny thoughts from California.

Hello lovely

It sounds like you’re scared and so understand. I felt the same on my recurrence. I really think you need to feel confident in the information they are giving you. If you don’t feel like you know what’s going on, I’d try your CNS nurse for some more answers. Your ca125 is still within normal range which is hopefully a good sign. Mine was in the 1000’s! Do keep in touch as to what they say? Much love to you. Nicky xx

Hi all, thanku for ur lovely replies they've really helped. Well my consultant rang me as promised, and now it seems there maybe 2 other "areas of interest" near my stomach and spleen. Not really wot i wanted to hear. Altho a surgeon at the meeting said shd wud b willing to operate so that's good and i've just been for a PET scan which is a first for me. Onc also said she may even get my abdomen exlpored with a camera using keyhole sugery (sorry can't remember the proper name for it!) So I guess she's doing all the right things which is reassuring and hopefully i'll come out the other side again x

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