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adenocarcinoma arising from endometriosis (ovary)

bluesmama
Posts: 124
Joined: Aug 2014

hey folks... so I was originally diagnosed with Stage 1A, grade 1, endometrioid adenocaricinoma in 2014. i had a total hysterectomy with right salpingo oopherectomy. in other words, i left my left ovary behind. two years later, there's a large mass on my left ovary. the mass was stuck on my sigmoid colon so they had to resect it and it was partially stuck on my left pelvic wall. obviously, the ovary came out along with omentum, some lymph nodes, pelvic washes, and biospies of the quadrants. the tumor ended up being the same as the original tumor in my uterus. all of samples were negative.

so... my hospital's tumor board has come back with conclusion that this is adenocarcinoma arising from endometriosis which means a treatment plan of chemo then 5.5 weeks of daily radiation then chemo. finally another 4 cycles of chemo. they're not treating this as ovarian cancer.

my question is have any of you ladies had to undergo this treatment? how was it? 

Nellasing
Posts: 529
Joined: Oct 2016

I don't have any answer for you but I did want to just say how sorry I am to hear this news.  I know there are many ladies here who have so much information to share.

I hope you'll keep us posted.  Sending you healing prayers and (((HUGS)))

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Hello Bluesmama,

The treatment plan you described sounds like the very common "sandwich regimen" that many women on the board have had. You will find some discussion of it in various threads. One to check may be the one called "Ladies going through chemo."

Wishing you success with your treatments.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

I had that same type of "sandwich" regimen and (thankfully) had very minor side effects. Try to find out what chemo meds they are recommending and what type of external radiation. Those are important details that will help guide the questions you'll want to ask and to help prepare yourself for the best possible outcome. Good luck to you and keep us updated on how you are doing! Kim

bluesmama
Posts: 124
Joined: Aug 2014

i'm in auto-pilot mode. i didn't even think to ask basic questions like my prognosis and stage. i'm really scared about the hair loss, side effects, and  scaring my little nieces who i adore. le sigh. 

Nellasing
Posts: 529
Joined: Oct 2016

has some good info toward the end especially about losing hair, head coverings etc.

That was one of the things I dreaded the MOST was the hair loss and feeling/looking sick.  I did lose my hair before my 2nd treatment but before my 1st one I had gotten my shoulder length hair cut really short and then before 2nd treatment I went and had it shaved and started wearing the pre-tied scarves that are so easy and cute.  Also picked up a couple little caps and a friend made me a few things too.  I think preparing in advance and choosing when it all went - even though still hard and tears etc. was still easier than just letting it happen - I felt in control of that at least. 

There are great threads about side effects- you put in key words in the search at the top and just read what looks interesting.  I finished Chemo Carbo/Taxol Sept. 21.  For me, I focused on keeping my healthy body healthy.  I drank at least 1/2 my weight in filtered water in ounces per day (also good for veins and clearing the chemo) I brought and drank even more the day of chemo- sit near the restroom ;)  I found it burned less when you pee it out.  I eat organic and NO SUGAR unless it is a little fruit- mostly berries for their cancer killing properties.  I kept walking EVERY DAY even if not as far as normal.  I took and continue to take supplements (but NOT 48 hours before or after chemo and I also did the ketogenic fast during that 48 hrs before and after which isn't a full fast but limits sugars of all kinds so body has to run on ketones - guess what can't do that- CANCER so it makes the chemo work even better some believe.) I did that under the care of a naturopath.  I still have my original bottles of pain meds, anti nausea meds, etc. etc. because I think those things kept me from getting the extreme side effects.  I still had them- pains here and there, weakness, fatigue, smelled smoke that wasn't there, blurry vision, some neuropothy, in right foot mostly, the constipation is the WORST- you want to stay on top of that so everything gets moving OUT as soon as possible.

I researched, watched youtubes, read books etc. etc. - I told a friend I feel like I have enrolled in cancer university. I hadn't found this group of ladies so I was very much hungry for information.

I hope that helps a little- please ask questions- nothing is too much to ask!  Being here for each other and focusing on the day you are in is a great way to not be afraid yourself and you wont pass that fear on to your precious nieces- make it fun- maybe they can having a matching cap and you can wear them together?  Love and ((((HUGS))) you can and WILL do this and you'll be blown away as you look back at how far you've come!!!

janaes
Posts: 786
Joined: May 2016

Hair loss is a hard thing to deal with.  It was for me forsure.   I had to take things a day at a time with that for sure.  It was fun to go wig shopping though.  I took my sister and my dad and step mom came.  Even though I felt a little alone because no one else was buying one for themselves, it still was good.   The worker there really did pampered me.  I came home and tryed it on and remember it took me a while to want to where it anywhere,but was really glad i had it and had practiced wearing it in the house and yard.   I remember the fist time i saw my hair comming out in my comb i went to church and told my kids to not touch my hair.  I wasnt ready for the big loss yet.  It took time for me

Janae

Kaleena's picture
Kaleena
Posts: 1979
Joined: Nov 2009

I was diagnosed with endometrial adenocarcinoma Stage 3a, Grade 2 - they found it in my uterus, cervix and left ovary.  They had also removed 25 lymph nodes, my appendix and my omentum.   They were never really able to determine the original origin of the cancer.  They thought it may be MMM but decided with the diagnoses indicated.  However, I was treated as Ovarian Cancer.   I was 45 years old at the time.   I started out with Taxol and Carbo, but I couldn't do the taxol so they changed it to Gemzar and Carbo.  Then I had 3 brachytherapies.   Just so you know, that was in 2005.   It was 11 years ago this month.   I did not lose my hair with the Gemzar.   I thinned a bit and I didn't have to shave my legs for awhile.  My main problem was fatigue.  

My best to you on your upcoming treatment.   Sending you comforting (((Hugs))).

Kathy

bluesmama
Posts: 124
Joined: Aug 2014

I saw my medical and radiation oncologists. They're going to approach it both ways (arising from endometriosis and endometrioid ovarian cancer) because they couldn't decide how this second cancer came about. Phase 1 will be cisplatin sandwiched with concurrent radiation for 28 days. Phase 2 will be 4 cycles of Carbo-Taxol. Has anyone tried cold caps to prevent hair loss? I'm fortunate enough to be able to afford it but not sure if it's worth the trouble.

I'm trying to enjoy the last couple of weeks of chemo/radiation free days for now. I'm bored to tears now that I'm on disability. About the only excitement during my day is checking my incision which opened up a bit after the staples were removed. 

Nellasing
Posts: 529
Joined: Oct 2016

someone was going to gift me the cold cap because I was so freaked out about losing my hair.  After researching what it takes to do it and knowing I only had hubby to help with the process I wasn't sure about it so asked my gyn/onc and she said they are concerned about the possible cells that will be preserved in that area.  That was enough for me to just give up the idea and I went and got some cute little pre-tied scarves and hats and called it good.  I figured if I was putting myself though all that then I wasn't taking a chance on saving any of those little cells ;)  

Do really focus on enjoying yourself- the only day any of us has is TODAY and we need to LIVE each day.  Look for wonderful things to be thankful for- I start a list in my head as I open my eyes each day- so THANKFUL for a roof over my head, my warm comfy bed, my kitties who kept me company, my hubby who is puttering around, the beauty outside my window.... it goes on and on but it really helped me from day one to focus on THIS DAY <3 

Prayers and (((HUGS))) as you keep on keeping on. 

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