1. < Gynecologic Cancers
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My cancer is back...

Posted by MommaCandy @mommacandy, Feb 18 9:35am

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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Profile picture for mayers
mayers | @mayers | Mar 30 12:34pm
In reply to @mommacandy "@mayers my first time i was on carbo/taxol...i was told locally that they could offer me..." + (show)
Profile picture for MommaCandy @mommacandy

@mayers my first time i was on carbo/taxol...i was told locally that they could offer me comfort care...not an option imo because i was dealing with my best friend and his pancreatic cancer also and his only caregiver..., i went 4 hours away to a teaching hospital with a WONDERFUL cancer program where he was getting chemo...i was stage 3c, ovarian throughout my abdomen, went through 7 surgeries that year including 2 for skin cancers one of which i had to have nose reconstruction for ...yea the nausea and hair loss sucked, i went through i think everything possible it seemed but i honestly think i was more scared this time.. prob because i don't remember so much last time since i was dealing with his...
i think you should consider the chemo, BUT that is YOUR choice, no one can make that for you, however i was beyond was the local docs thought was treatable and they were wrong lol...of which i've told them so when i see them...(yea i tend to be opinionated but if i don't advocate for myself who will) yes the side effects suck but i rocked those wigs, i even had a blue one, my son who was in florida had one made from his hair (Can't find that pic"), i had a bright red one, one that was kinda the color of my hair before i started getting gray that looked really natural and a couple of wig caps that looked like i was just wearing a ball cap over my hair.. they were great...
attached are a FEW of my various looks while going though the hair loss etc ( I had about 20 wigs, amazing what i found NEW at yard sales lol)...i kept my favorite wigs in case i ever needed them but donated the rest to the cancer center for others going through it...it was like everything else...i dealt with it all with humor (including the go away shirt lol i had matching leggings with smiley faces on them) and even dressed as an elf when i was in for my last surgery in Dec 2024...i have that pic somewhere if you'd like to see it...gotta say i really didn't look good as a blond unless it was my ball cap one so i didn't share those LOL

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@mommacandy Thanks for your reply. I'm really down today. I need a pet scan and have to go without sugar for two days and I'm a sweetaholic and also claustrophobic so I'd just like to forget the whole thing and just die asap. I cannot accept the fact I have carsinosarcoma of the uterus. It was 96 percent filled with cancer, but they removed everything ovaries, uterus, falopian tubes and cervix as well as the uterus and now they want a pet scan. As I said before, I'll do radiation but not chemo. How I hate scans with my claustophobia. I still think you are the bravest woman I know. Margie

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3 replies
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MommaCandy | @mommacandy | Mar 30 2:05pm
In reply to @mayers "@mommacandy Thanks for your reply. I'm really down today. I need a pet scan and have..." + (show)
Profile picture for mayers @mayers

@mommacandy Thanks for your reply. I'm really down today. I need a pet scan and have to go without sugar for two days and I'm a sweetaholic and also claustrophobic so I'd just like to forget the whole thing and just die asap. I cannot accept the fact I have carsinosarcoma of the uterus. It was 96 percent filled with cancer, but they removed everything ovaries, uterus, falopian tubes and cervix as well as the uterus and now they want a pet scan. As I said before, I'll do radiation but not chemo. How I hate scans with my claustophobia. I still think you are the bravest woman I know. Margie

Jump to this post

@mayers can they not give you something to help with the claustrophobia? i know they do at my hospital if needed as well as gave me earphones to listen to music when i was getting my MRI, the CT scans didn't last a long time, and my head wasn't in the machine but i used to be a wild tour guide in caves so not claustrophobic by any means, but they did offer it...its worth asking about... ask them if they can do CT scans instead of a pet scan.. that way you don't have to go without your sweets lol... and ask them WHY they think a PET scan is more useful to them than CT scans...
the way my doc explained it, radiation will only hit what they can see after your surgeries, chemo will attack all the microscopic cells that they can't see...which is why he prefers chemo.. like you, i had all female parts removed as well as my omentum (the fatty tissue that separates pelvis from abdomen) my appendix, meso appendix, lymph nodes, and a pelvic abdomen scrape to get the cancer off the walls of the abdomen in one surgery, then had an acute attack of pancreatitis 2 weeks later, and they went in to remove my gall bladder, found more cancer hiding behind it, and removed that as well... the chemo got what was on my large intestine so i didn't need a colostomy (i went into surgery knowing that might be the case), as well as what was on my liver.. that was the 3 treatments of chemo before my main surgery...then had 3 after those surgeries...
i hope this helps...but feel free to reach out if you have more questions, concerns, etc...i'll do what i can...

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ffr | @ffr | Mar 31 6:56am

I love how you rocked it with the wigs!!

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Profile picture for Helen, Volunteer Mentor
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Mar 31 8:30am
In reply to @mommacandy "@mayers my first time i was on carbo/taxol...i was told locally that they could offer me..." + (show)
Profile picture for MommaCandy @mommacandy

@mayers my first time i was on carbo/taxol...i was told locally that they could offer me comfort care...not an option imo because i was dealing with my best friend and his pancreatic cancer also and his only caregiver..., i went 4 hours away to a teaching hospital with a WONDERFUL cancer program where he was getting chemo...i was stage 3c, ovarian throughout my abdomen, went through 7 surgeries that year including 2 for skin cancers one of which i had to have nose reconstruction for ...yea the nausea and hair loss sucked, i went through i think everything possible it seemed but i honestly think i was more scared this time.. prob because i don't remember so much last time since i was dealing with his...
i think you should consider the chemo, BUT that is YOUR choice, no one can make that for you, however i was beyond was the local docs thought was treatable and they were wrong lol...of which i've told them so when i see them...(yea i tend to be opinionated but if i don't advocate for myself who will) yes the side effects suck but i rocked those wigs, i even had a blue one, my son who was in florida had one made from his hair (Can't find that pic"), i had a bright red one, one that was kinda the color of my hair before i started getting gray that looked really natural and a couple of wig caps that looked like i was just wearing a ball cap over my hair.. they were great...
attached are a FEW of my various looks while going though the hair loss etc ( I had about 20 wigs, amazing what i found NEW at yard sales lol)...i kept my favorite wigs in case i ever needed them but donated the rest to the cancer center for others going through it...it was like everything else...i dealt with it all with humor (including the go away shirt lol i had matching leggings with smiley faces on them) and even dressed as an elf when i was in for my last surgery in Dec 2024...i have that pic somewhere if you'd like to see it...gotta say i really didn't look good as a blond unless it was my ball cap one so i didn't share those LOL

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@mommacandy I love the wigs!! You are so very creative.

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Profile picture for Helen, Volunteer Mentor
Mentor
Helen, Volunteer Mentor | @naturegirl5 | Mar 31 8:42am
In reply to @mayers "@mommacandy Thanks for your reply. I'm really down today. I need a pet scan and have..." + (show)
Profile picture for mayers @mayers

@mommacandy Thanks for your reply. I'm really down today. I need a pet scan and have to go without sugar for two days and I'm a sweetaholic and also claustrophobic so I'd just like to forget the whole thing and just die asap. I cannot accept the fact I have carsinosarcoma of the uterus. It was 96 percent filled with cancer, but they removed everything ovaries, uterus, falopian tubes and cervix as well as the uterus and now they want a pet scan. As I said before, I'll do radiation but not chemo. How I hate scans with my claustophobia. I still think you are the bravest woman I know. Margie

Jump to this post

@mayers You have more than enough to manage in your life without the worry of claustrophobia during scanning.

There is no way I get into the room for an MRI or PET without meds. Like you, I'm claustrophobic. I've found out that there are many of us who this response to MRI or PET so it's not all unusual. Please advocate for yourself and tell your oncologist who ordered the PET how you feel about the claustrophobia.

When a PET or MRI is ordered for me I ask the medical provider to prescribe medication. The medication is usually Ativan. The prescription is then available for me at the pharmacy prior to my appointment. The prescription is a few tablets. This is just enough to get me through the scan.

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Profile picture for jeanknoll986
jeanknoll986 | @jeanknoll986 | Apr 1 4:04pm
In reply to @mayers "@mommacandy Thanks for your reply. I'm really down today. I need a pet scan and have..." + (show)
Profile picture for mayers @mayers

@mommacandy Thanks for your reply. I'm really down today. I need a pet scan and have to go without sugar for two days and I'm a sweetaholic and also claustrophobic so I'd just like to forget the whole thing and just die asap. I cannot accept the fact I have carsinosarcoma of the uterus. It was 96 percent filled with cancer, but they removed everything ovaries, uterus, falopian tubes and cervix as well as the uterus and now they want a pet scan. As I said before, I'll do radiation but not chemo. How I hate scans with my claustophobia. I still think you are the bravest woman I know. Margie

Jump to this post

@mayers Hi. I had something very similar to you. Full hysterectomy with a uterus that was totally full of tumor, plus the ovaries, fallopian tunes, cervix etc. My cancer was a low grade, but I did chemo, then radiation. I have had CT scans and a PET scan as well. Today, 1 yr since my 1st chemo treatment, I can almost say it feels like all of that happened to someone else. I feel good. I know recurrence is a possibility, but I am glad I took all the treatments I did. Why are you so opposed to chemo if you don't mind my asking? Apart from losing my hair, and some neuropathy in my feet, the chemo was okay. I hardly noticed any side effects during radiation, and I traveled 4 hrs each day for 28 consecutive days for that treatment. The PET scan I had, was not claustrophobic but I just kept my eyes shut during it. I was not told to lessen sugar before it. Sugar, mixed with the radioactive agent, is what allows any cancer to glow showing where any more resides. I wish you well. Please reach out if you have any questions I can help you with.

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