My cancer is back...
2 years ago in January i was diagnosed with ovarian cancer that had spread all over...i went through chemo, multiple surgeries etc...by Oct i had NED...
well about a month ago i started having pain in my pelvic area, then in my upper abdomen.. , my CA125 was still at 18 the week before my pain started (which concerned me because it had been between 8 and 12 but what do i know LOL) so doctors weren't really concerned but i kept telling them something was wrong... the final thing which i think made them agree they needed a scan was when i told them i had started having that "balloon deflating" feeling every time i emptied my bladder in addition to the pain which is EXACTLY the feeling i was having that caused me to go to doc with a persistent UTI 2 years ago and led to the original diagnosis
finally they ordered a CT scan which i had done last Thurs... and it showed 2 spots in the pelvic cradle one measuring 1.0 cm, one smaller and 2 on my liver... so needless to say...i'm going back on the same chemo i took before since i responded so well to it next Thurs... i am NOT thrilled BUT had i not kept insisting that something was wrong they wouldn't have found it so quickly..
I had NOT been on a parp inhibitor because it doesn't "play nice" with my seizure meds so Mon i saw a neuro who is changing my seizure meds after 25 years to something that does ...lets just hope it controls my seizures as well as the one i've been on for that many years...
Not looking forward to the chemo regimen again but on the plus side i know what I have to look forward to, and you know what really sucks? my hair has JUST gotten long enough to put in a ponytail again...oh well at least i kept my favorite wigs lol...
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So sorry to hear that. Hopefully the chemo will work as well as it did the last time, and the PARP inhibitor will keep it gone.
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2 ReactionsHi mommacandy.
I'm really sad to hear your news. But you should like you are up for the challenge.
Keep us posted on your next steps. I'll be here to read it and send you warm wishes.
Denise
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3 Reactionsi'll be honest, i'm way more scared this time than i remember being the first time ,,, i may not be as i don't remember a ton from that time because i was more worried about my friend and his cancer i think... i don't remember having these thoughts i've been having the last time ... maybe its my impatience, idk but i'd have much rather started the treatment as soon as they found it...not give it another week to grow in my body... i understand some things take a bit to get scheduled etc...but i'm quite impatient to just get it going...i keep thinking "ok what could i do to speed up this fight" so to speak.. i'm having all kinds of weird thoughts, like i should be doing things to prepare to die (ie getting property distributed etc)" but at the same time its like " heck no, i'm going to beat it this time too, i'm done with this crap" but these started before i even was diagnosed this time...was i subconsciously realizing this was happening? idk..
i know this board was highly supportive last time and sooo i guess thats why i came here when i realized it was back... i knew i could come here, talk about my fears, nerves, etc and be ok...yall wouldn't judge me...
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9 ReactionsOf course, no judgment. I am impressed with your insistence that you knew your body, your resiliency and your fighting spirit.
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4 Reactions@mommacandy You've been on my mind lately as I was wondering if your recent cancer surveillance appointments continued to be NED for you.
I'm really glad you came back here to let us know what's going on . When I had a recurrence two years after my initial diagnosis (for me the initial diagnosis was endometroid adenocarcinoma, FIGO 1 Stage 1a, radical hysterectomy and no other treatment) I was far more frightened than the first time. My mind went to some dark places like you. It took a few weeks for additional tests , phone calls back and forth, and then radiation therapy was recommended. I did the radiation therapy and I chose to live in Rochester, MN for. weeks where Mayo Clinic is located and where I've been a patient . The local oncology care in the rural area where I live is, well, not all that good. I recall that initially you went to another state for your care too. So will you be traveling again for chemotherapy? It's all so disruptive and not at all what we planned on, right?
Thank heavens you listened to your body and insisted and insisted that something was not right. Finally, the CT scan confirmed just that.
We will continue our support for you. Go ahead and talk about your fears, your worries, anything that comes up for you. We take care of one another and we listen. And no judgement here.
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7 Reactions@mommacandy
Hi there, I’m sorry to hear this news. Sending you positive thoughts and energy as you prepare for this next round of treatment. Keep us posted. We are all rooting for you. 💙
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5 ReactionsHi, I'm sorry that your cancer returned. I know how hard it is to accept that it has returned. But you have a strong spirit, great doctors, and a good support from those who care about you. I'm sending you positive thoughts to defeat cancer once again.
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5 Reactions@naturegirl5 yes i will be traveling again the 4 hour trip...and simply because oncology care here sucks to put it nicely...remember they offered me comfort care when i was first diagnosed...for those who aren't familiar with my story...i had stage 3c ovarian and it was throughout my pelvis and abdomen.. i responded well to the chemo and multiple surgeries...i think by time i had the reconstruction surgery on my nose for the skin cancer that was removed there in Dec of 2024 i was up to 7 surgeries that year...it was rough esp losing my best friend through all that...i honestly think thats prob why i wasn't as scared ...because i was focusing on his cancer journey and mine was just "going along for the ride" so to speak...
maybe because its a reoccurance idk but this has definitely been more scary for me...but its like i told my care team there...i don't care if my numbers are still "normal range" something is wrong...i knew...and wanted something done asap...
its just strange feeling these weird feelings about it this time...i can't talk to anyone here about them...cause "i'm the strong one" and they would totally break down and i can't have that...
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5 Reactions@mommacandy Ah, yes. I recall that you drove out of state for your oncology care for the same reasons that I do the same. I didn't realize at the time and perhaps you did not either that when your cancer diagnosis came at the same time as your best friend that you were putting your energy toward him. Of course you wanted to do that at the time. And yet there could have been all sorts of unprocessed grief you had about your own diagnosis.
I definitely know what you mean about being perceived as "the strong one". This is why I told very few people about my cancer and I still feel that way. I know that one gets support by telling others but I also think at least for me that I want to choose carefully who that will be. I told no one at my former employer (I was diagnosed the year I retired) because I knew I would get those platitudes about how strong I am and "you've got this", etc.
You are a good model for us - listen to your body and insist that you know when something does not feel right. Advocate for yourself.
Do you have a schedule for starting your treatment? Who will drive the four hours there and back with you?
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4 Reactions@naturegirl5 where do i even begin...
yes i was taking him to UVA for his pancreatic cancer care and actually got the phone call from my pc when i was in the office of one of his doctors there...i think it was his endocrinologist, and we drove across town to his oncologist appt where HIS oncologist asked what was going on, he told him and he asked to see the CT images.. i pulled them up on my phone, sent to his email and he looked at them on the computer and said "we need to get you in downstairs " his office was on 3rd floor and gyn oncology was on 2nd.. long story short, i applied for Tenncare in TN due to a clerical mistake i was denied However it was because of that, i was accepted at UVA for care with financial assistance really quickly probably due to his doc...which was a HUGE blessing...God at work no doubt. My mother was treated by UVA back in 88 so when they learned that, i had a geneticist put on my care team, was tested for BRCA and it came back positive for BRCA 1... so i was already going to UVA with him for his chemo, so instead of driving him we started having one of my kids most of the time driving us both.. his was on Wed mine on Thurs, but he was finishing his as i was starting mine...he had surgery, stayed up there for radiation, found out it had spread to his liver and nothing more they could do...so he essentially moved into our house for his last months on comfort care while my kids were still taking me for chemo...i was getting better while he was dying and that was hard...i went through a lot in 24...(his memorial video that i conducted is up on my channel on youtube bhale7904 is my user name for those who want to see it )
yes i'm tired of the "platitudes" especially the "you did this once you'll do it again, you're so strong, i couldn't go through what you've been through" etc while looking me dead in the face and often i look at them and say" yes you could, you don't know what you can do til you have to" or my favorite lately.. "at least i'm not Job" Yes i know i'll get through it, i'm not giving up and that is why i appreciate the comments here...because YALL understand...you've been there done that got the tshirt so to speak, so the encouragement from you all means a lot..
As for treatment, i get my port put in next thurs morning ( the crappy part is i JUST had it taken out in Dec) have to be at dr's office by 1:!5 (across the street from IR at the hospital) and then upstairs to chemo by 2:15... then we'll be coming home because my daughter who is driving this time has to be back to work Friday...i'm going Wed for acupuncture because i remember how much it helped before with the nausea etc when i got it day before chemo and then we're driving up to stay in the hotel Wed night...
i honestly believe if more people would advocate for themselves it might be a pain for the doctors but we'd get a lot better care. I did even meeting with the neuro on Monday, i told him i needed something done about the tremors, but if he felt like a different med would stop the tremors i was open to trying it and like he said, if i had a seizure while changing meds it would be better to have it in the next month or two than 3 or 4 months down the line when i was weaker from chemo...
one thing i would like everyone's opinion on is this...how can i keep my blood levels up? as some of you may remember i had to have nulesta or whatever it was called to build white blood cells quicker for the chemo...i often had to go 5 or 6 weeks between instead of 3 because i wasn't building blood fast enough and ended up having 7 units of blood from the red blood cells not reproducing quickly as well... any suggestions appreciated (as long as it doesn't involve eating things like broccoli, or any dark leafy vegetable, ain't never liked them and ain't about to start eating them at 60 lol)