Reoccurrence during chemo?

[FlowerRose]

Hello. I'm brand new to this group and I have loved scrolling through all your thoughtful, helpful comments. By far this is the best place I've yet to land for informative, current opinions/thoughts on ovarian cancer. Doesn't mean I want to be here, though Sigh.

Diagnosed stage 3c OC two months ago, debulking surgery already done, finished 2 of 6 rounds of carbo/taxol/Avastin chemo. No cancer left to the naked eye save for a 4 mm mass under my liver. Seeing my surgeon tomorrow for pains in the abdomen that I don't think are related to scar/tissue healing.

Has anyone ever heard of or had a reoccurrence DURING chemo treatment? I'd like to think that sounds crazy, but getting cancer sounded crazy to me at one point yet here I am!

Everyone please tell me they've never heard of that and that the mere concept is insane

[Nouna99]

I don't think it is a recurrence If you were NED before starting chemo. I had a lesion on my liver sometime between recurrences but it turned out to be a benign lesion. it was showing in every scan and doctors were scaring me every time! It was nothing!

Could your pain be from internal tissues healing? or adhesion tissues forming?

Check with your doctor if you can be on Olaparib after chemo for prevention.

Good luck

[FlowerRose in reply to Nouna99]

Good idea, thanks. Yes, definitely could be from healing, except these current ones just felt a little different. Of course everything could be another cancer in our minds, right? I'm new to all this and I hate how it feels like that fear will never, ever subside.

[Lyndy]

Hello and welcome! It is not unusual to have pain during chemo...I used to think that it was positive pain caused by the killing of cancer cells in my abdomen.

If you have only had 2/6 rounds you still have one to go before your half way scan. Don’t forget that your poor body is reeling from surgery and then poisoning from chemo!

Best of luck xx

[FlowerRose in reply to Lyndy]

That's funny you say that because I've had that thought too! In fact these pains are most prominent the second week after chemo, so maybe now part of that cycle (like the first week after chemo being the week I'm up to pee a million times a night, every night!!) I hope that's all it is. Week two is the Pain In the Abdomen week, maybe.

[Neona]

I recurred during chemo after being NED following surgery. However I have clear cell which is often chemo resistant. If you have high grade serous I would have thought it unlikely to have recurred so soon. Does the mass under your liver mean that you are not NED?

[FlowerRose in reply to Neona]

Oh dear, I'm sorry to hear that. Yes, i imagine I would NOT be considered NED because there was the 4mm tumor "left" after surgery. I am high grade serous. Hmm...

[JustKBO]

Hi FlowerRose. It was interesting to see your post today because I’ve been having the exact same thoughts as you. I had a reoccurrence of Stage 3 OC in September and following another debulking op am halfway through my 6 cycles of Carbo/Caelyx. I have similar aches and symptoms to those that alerted me to the recurrence and I’m panicking. I have a cough and discomfort in my upper back. My husband ( long suffering and very patient) is saying that only two weeks ago my CA125 was 15 and all seemed well but it doesn’t stop the worry. I too have a lesion showing on my liver but they are hoping it is scar tissue. I have the midway contrast scan this week so I suppose that will throw some light on the situation. Not sure why I’m writing this as it is really helping you but I do understand your thoughts. 🤨

[FlowerRose in reply to JustKBO]

Lots of times all you need is someone to understand your thoughts, as you say. I'm sorry you're going through this too. I'm in Los Angeles and I understand this group is based in the UK? It's interesting and really useful hearing how treatment can be different between here and there. For example, I don't think it's a given that I'm going to get a mid-way scan during chemo. Maybe I'm wrong. I sure think that would set my mind at ease though.

[Irisisme]

Welcome FlowerRose,

I was told the pains I had during chemo proved it was working on the cancer cells we knew were still there. Mine were masses of ‘seeds’ not a 4mm lesion but the same could be true for you. It’s a comforting thought anyway!

Iris x

[Bettyxxx]

Hello Flower rose

I agree with the others all sorts of aches and pains occur during chemo and after surgery, i think the mind is now tuned to looking for and danger signs (of recurrence) and thats going to be a useful tool for after the chemo is finished so embrace it for later. Meanwhile i found it useful to keep a record of my symptoms day by day when on chemo it helped me to see the pattern of symptoms and make sense of them. I remember well that feeling of fear and dread at the beginning and that things will never be the same again, but it does settle down and we learn each in our own way to live fantastic lives despite and because of our diagnosis so dont worry about that for now. Also a footnote i have 2 x4mm lesions on my liver since diagnosis in 2014 (stage 3b high grade) and despite one recurrence they have never changed and are thought to be benign cysts

Sending lots of love

Diane

[FlowerRose in reply to Bettyxxx]

Your comments help so much.

May I ask you about your reoccurrence? How many months was it between your being done with your first set of chemo treatments and tumors showing up again? And did they approach the reoccurrence with the same treatment? Where did the reoccurrence show up in your body? I'm glad you're dealing only with benign cysts now.

[Bettyxxx in reply to FlowerRose]

Hi there

I had a recurrence in my bowel 4 years after initial treatment, this was removed by surgery then more chemo. The surgeon thought i would have multiple lesions when she opened me up but it turned out to be just 1 which was completely removed. She saw the liver cysts then and said they were nothing.

I am not under any illusions with this cancer its luck of the drawer and i have been lucky, i exercise every day and i am a glass half full person and try (mostly) to just get on with it x. I have seen both my kids married and 2nd and 3rd grandchildren on the way all of which i was convinced i wouldn't see, my husband says oncologists just love to give bad news 😂😂 i drink alcohol and eat sweets, i tried niraparib for a year but it turned me into a psychopath, i think when you start fantasising about killing people its time to stop 😬🙈

I eat mostly very healthily and try and avoid too much stress otherwise its just pot luck xx over the years on here i have seen many people come and go and some who manage to stay, no one deserves this cancer its a Shitty one but here we are xx

Lots of love

Diane

[Flamingobeef18 in reply to Bettyxxx]

Very well put Diane.

Juliax

[FlowerRose in reply to Flamingobeef18]

My thoughts exactly. I haven't heard of niraparib, but I think I'll be avoiding it!!