CONFUSED AND WORRIED: Just had my blood... - SHARE Ovarian Can...

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CONFUSED AND WORRIED

Heidels profile image
5 Replies

Just had my blood work and Ca-125 is now a 7. It was a 5 after all my chemo was wrapped up. Had a scan in January and it was good.NED ! Had a CT scan done last week and am told there are possible suspicious areas......one on bladder wall and one on sigmoid colon. Possible recurrence now? I don't know what to think. Doc wants me to come in to discuss things, like getting on Zejula now to keep whatever they found at bay. I thought to myself, to keep what at bay??? They dont know if that is cancer returning, apparently too small to know what it really is.One is 5mm and one is 9mm.So, what do I do? Just take this Zejula, this parp that could cause lots of side effects or hold off until another scan in 6 to 8 weeks to see if anything has changed or grew. I never took Zejula after my chemo ended, didn't think I needed it since it is less effective if you do not carry the BrCa gene, which I do not. I am just confused as to how my Ca125 is only a 7 and this CT w/contrast shows these suspicious "spots" What else could those areas be if not cancer recurrence? Does anyone have similar situation?

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Heidels profile image
Heidels
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Wicomico profile image
Wicomico

I have no suggestions or ideas, but I do wish you the very best. (I understand you not wanting to take a drug unless/until you know that you need it---that is my big stumbling block to further treatment if/when suggested.)

mizpurple profile image
mizpurple

I'm so sorry you are facing this after thinking perhaps you would be good to go, for a good long while at least. You might want to ask your oncologist when you go in for your consult whether he/she thinks your CA125 is actually a good indicator for you or not (and why or why not). Some oncs are more proactive in getting ladies on the PARPs as a maintenance measure, and the current approach is to allow non-BRCA ladies to take them (in the past, they were often denied). Other oncs take a watch-and-wait approach, looking for evidence of recurrence in scans or in symptoms before they put you back on treatment. Ultimately you get to decide which approach YOU feel most comfortable with, and it might depend on lots of factors like how well you are feeling now, how much you need a mental or physical break from active treatment, what else is going on in your life. Even if you decide to start with Zejula, you can always stop or ask for a reduced dose if the side effects are troublesome. I wish you all the best in making this decision - nothing about this blasted disease is ever easy! Deb in Colorado

Tabor profile image
Tabor

Hi Heidels, sorry you are confused and worried, one of the biggest question I would ask myself is do I trust this doctor? If I were in your shoes and truly trusted my doctor I would take his/her advice or at least ask for another CA125 blood test to see if still going up. God Bless!!

RachelFaye profile image
RachelFaye

Dear Heidels,

I sincerely wish you the best in discerning ongoing treatment.

I apologise for not having replied since I was asked on Saturday but any time I tried I got message ‘safari could not open page.

I also have stomach ache which I worry about lest...

My OVarian Cancer saga is a limited one:

A big mass was discovered fortuitously on right ovary on a kidney ultrasound in July 2018.

My Ca 125 (22).

I had total abdominal debunking August 20th 2018.

On September (9)/11 I was told by telephone that I had Ovarian cancer stage 1(a) Grade 1.

Endometrioid.

No chemo offered because of stage.

Watch & wait:

CT scans every 3 months for 1 year

Now on year 2 ct scans every 4 months

Then Covid-19 came along and I haven’t dared go in to hospital for ct scan since last December lest I contract it or bring it home to husband who has a blood cancer and is immunity-suppressed.

Virus is in local hospital.

My ca125s have been around the “10” mark.

Have been afraid to go down to GP since Covid.

I shall try to help you more if this is not helpful.

I live in Ireland so regime here might be a little different and not as advanced as in U.K.

Blessings,

Rachel Faye

I w

Faithwill profile image
Faithwill

I am currently on Zejula. Some side effects such as abdominal pain off and on. My oncologist wanted me on it to keep me cancer free. My BRACA was negative for DNA but the tumor that was removed had a sematic mutation. We will talk dosage next week . Tracking CA125 as it did go up a bit from 10 to 54 in past 3 months. Want to see what is going on. Feeling great otherwise. God has me in His hands! Will pray for you. Ask lots of questions!

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