Was I ever in Remission with no evidence of cancer ?..

[annieH1]

Hi all ,long time since I've visited this forum.

After being told in December 2017 after CT scan that ,there was no evidence of cancer and hadn't been in the previous 2 CTs I was overjoyed.In Remission!!

At the same time I wasn't sure if I could believe it or not as my CA125, which for me is a big indicator was rising by the month(hence the CT scans).Eventually around March/April last year,started getting the odd ache in my side,CA125 almost doubled yet still no evidence in CT,in June I started getting symptoms as I got pre diagnosis mostly acute constipation.At this stage after reading up on things I insisted on a PET scan,low and behold there were the buggers shining like neon lights on a bordello!!

Now I had been told on initial diagnosis that I was inoperable and incurable ,advanced stage four,2014,chemo twice,Avastin,and since 2016 on Olaparib.I was told after PET scan that I was now operative,Yippee!!! Had radical hysterectomy,partial omentum removal and they had found malignant cancer on Fallopian tubes,ovary,and abdomen.No chemo needed as still on maintenance drug.

CA started rising again December 2018 ,so I again insisted on PET scan ,a little bugger is now taking lodgings on pelvis.I have 2 apps forthcoming to discuss present situation.

What I have found out during the past year is,a CT scan doesn't work for me,my CA 125 is definitive with my diagnosis and PET scan seems or be the way to go.What I also understand now is,a cancer patient specifically an O.C patient needs to be armed with as much information as possible regarding tests that might or might not be suitable .

There is nothing I can do but wait! And to be honest the waiting isn't that bad.i still get out of bed,not much pain if any,go for my long walks,take deep cleansing breaths and get on with my day.I usually have a few coins in my pocket to give to those people who might try to impose their opinion on me I say"here's 50c ,phone someone who cares about your opinion ,coz I certainly don't"! Needless to say ,hubby has made a lot of those phone calls ha ha ha,jeez his opinions are mighty !! Love to all you wonderful women xx

[Lindaura]

Really interesting and informative post, Annie,

And I totally agree with you. We have to arm ourselves with knowledge and take charge of our care.

When my Ca-125 began to double , 6 months post first Line, I had no symptoms at all. Felt fit and healthy, but I was prepared to argue with my Onc for treatment, if nothing showed on my CT scan.

I was not going to submit to “watch and wait”.

Fortunately, my Onc was ready with second line treatment, Carbo/Caelyx and my CA-125 went from 473 to 17 after 4 infusions . I am hoping to get to single digits after my sixth.

Anyway, Bravo for you.

Keep up the fight,

Hugs,

Laura

[Irisisme]

Hi Annie,

Yeah, CT scans don’t show everything!

At my debulking the surgeon found masses of miliary disease i.e. cancer seeds so small they don’t show on a CT scan, but they have still caused me problems as they surround my small & large colon. I haven’t had a PET scan, my Oncologist just says “we know they are there and we’ll treat you based on symptoms”. I have had chemo based on symptoms rather than a scan or CA125 - and it did ease symptoms too!

We are all different but we do need our medical teams to act on our symptoms not just rely on CT scans (or solely onCA125 results, which aren’t reliable for everyone).

Yes, and we do need to arm ourselves with as much information as we can find, and not allow ourselves to be fobbed off, I needed to remind myself of that recently.

Good luck 🍀with the waiting game and 🤞for the future.

Hugs,

Iris xx

[Lily-Anne]

It does depend on what you think NED means.

My second opinion doc, Macmillan and the majority of doctors I’ve met have told me that it means no new or active disease. If things are dormant, stable or not visible to the naked eye then it’s remission

CA125 is a good marker for me never had much luck with CT or perhaps it’s the image reader. Because they compare images they don’t look for new disease. PET is great but watch for cut off points. My liver which is an active organ will glow. The cut off figure is what they call normal. My liver was just over that but I have a fatty liver which increases activity. So after pointing that out nobody can agree. My oncologist says extensive liver disease. My palliative team are on the fence

We do have to study reports etc to be really in the know or choose not to and let them control our destiny

LA xx

[Hidden]

Hi annieH1

I have had similar problems to you. Diagnosed through groin lymph node as stage 4b.

CT scans have shown slightly enlarged lymph nodes but went back to normal range at during 1st line chemo. Told at end of this I was in total remission.

A CT scan 10 months later still showed this but I felt ill so a PET scan was done. This is the only thing (except biopsy of lymph node) that has shown anything.

Lymph nodes in groin, chest and seedlings on peritoneum. another line of chemo completed and now on Niraparib. Last CT showed no change but CA 125 starting to rise, very slowly but still a concern although consultant not concerned.

Really concerned how they will monitor this.

Lots of luck for the future.