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Let's have a roll call!

EZLiving66's picture
Posts: 1469
Joined: Oct 2015

We have a lot of new people and although the board has been pretty quiet lately, let's have a roll call.

1. Type of uterine cancer - Stage & Grade

2. Treatment

3. Current status

4. Anything else you'd like to share or what you've learned from this journey, etc.

If you've been following the posts but haven't posted yourself, now's the time to introduce yourself to us.



Ribbons's picture
Posts: 76
Joined: Jan 2019

I haven't been on here for a while so thought I would just do an update. Cancer was stage 1a and grade 3, clear cell. Total hysterectomy in Oct of 2018. 6 rounds of chemo, carbo/taxol. Finished that on Feb 15, 2019. So almost one year from my last chemo!! Followed up with 3 brachytherapy treatments. I hate that dilator, and have been questioning my decision to have brachy but after reading things on here again, I guess it was a good decision. I go for check ups every 3 months, so far I am fine. I only have mild neuropathy in 3 toes, but my fibromyalgia is a little worse than it was before chemo. My hair is about 5" long now and still super curly! People want to know where I got my perm and I say it took a long time and was really expensive, so I wouldn't recommend it!   I live in Western Oregon, and I keep busy with my horses and 2 dogs. I have a super husband and 3 grown kids who are all great. O and I am 67. Wish I knew if there were more people on here from Oregon.

JillAndrea's picture
Posts: 30
Joined: Jan 2020

Ribbons,  I love your response to the perm question!  I'm not from Oregon, but my mother in law lives in Depot Bay, right on the water.

Can you share why you hate the dialater?  I am starting brachy in March.

NoTimeForCancer's picture
Posts: 2878
Joined: Mar 2013

JillAndrea, the FUNNIEST experience is when I travel with the dialator.  One time my bag got pulled aside and I am thinking...Uh oh, I know what they see!!!  I flat out told the guys, "I know what you are wondering about, they are dialators.  I had uterine cancer and I have to use those."  Ha!  I had lost all modesty and it was my way of educating folks about gyn cancer. 

Usually the replies I get after poeple look at my horrific passport pictue when my hair was growing back and the curls had it glued to my head, and they hear I had cancer, "But you are ok now?"  Which is very sweet.  

dgrdalton's picture
Posts: 151
Joined: Jun 2017

1. Stage1A & Grade 3 serous

2. Open complete hysterectomy with 4 lymph nodes, LVSI neg, pelvic wash neg. in May 2017. After 2nd opinion and new GYN/oncologist I had 3 taxol/Carbo chemo and 6 brachytherapy from Oct 2017 thru Jan 2018.

3. Diagnosed with recurrence in lymph nodes in abdomen, chest & thorax in Aug 2019. Did 6 Taxol/Carbo ending Dec 2019. PET scan 2 weeks ago shows most lymph nodes have shrunk, 2 have grown and 2 new ones. Will have another PET in March and find out where we go from here.

4. This is an incredible journey that has given me a closer relationship with my God. I am blessed to have found this site and learned so much from the sweet, kind ladies on here. I am struggling some right now trying to find my new normal. Staying busy doing things I love and helping others when I can does help. 

Posts: 136
Joined: Nov 2015

1.  Type:  June 2015, Stage IIIC1, High Grade 3, Mixed 50% Endometrioid Adenocarcinoma (EAC) and 50% Uterine Serous Carcinoma (UPSC)

2.  Treatment: September-October 2015 Concurrent chemo & radiation, 2 rounds Cisplatin 3 with 28 external radiation treatments.  December 2015 - February 2016, 4 rounds of carboplatin/paclitaxel.

3:  Current Status:  4 years remission.  Dealing with many issues related to Pelvic Radiation Disease; lymphedema, neuropathy, bowel, pelvis.

4:  Obtain additional consultations from both Gyn & Radiation Oncologists on Pathology Report and treatment plan.  As bad or tired that you may feel, get up and exercise or do simple Yoga stretches.  I really regret not doing so for the 5+ months I was undergoing treatment, and believe this neglect has contributed to the deterioration of my body. 

Rosesforever's picture
Posts: 45
Joined: Sep 2018

Hi all,  I haven't posted for awhile but I follow when I can. 
At 73, 2/2/18 I had a radical hysterectomy dx 3B grade 1 followed by 25 external radiation & 1 brachytherap (biggest mistake I ever made)

I've had radiation cystitis followed by HBOT. I've had 17 UTIS in 2 years which are debilitating

My bladder is ridged and hard my urethra is damaged. I've had Botox to Relax & increase my bladder capacity and coaptite to close my urethrea. The Botox didn't work but the coaptite has given my leaking some relief but I have to self cath. I have been advised by 3 urologist to have a bladder diversion for quality of life (?) Which I currently Am choosing not to do. Oh, and I also have fecal incontinence.  
I am now faced with hydronephrosis due the strictures in my right ureter. I've had a stent inserted which hurts like the dickens all the time. I'm scheduled to have my stent changed to a shorter one in hopes it will relieve the pain in my couch. Last week I was told my right kidney is functioning at 18% and may have to be removed. 

whether these side effects are due to the surgery or radiation I'm unclear,, but used to be the energizer bunny I'm now a sloth  

My last Oncologist appointment showed NED

when folks ask about radiation I want to say "RUN " but I also know all my side effects are considered rare, lucky me,, wish I could win the lottery with this luck  

I'm sure I've left something out but I did want to check in  
I wish you all comfort, peace, good health and much happinless!!


CheeseQueen57's picture
Posts: 936
Joined: Feb 2016

Hi Roses. I'm sorry you're suffering so much. I suffered with stents for a year and it destroyed my cancer free quality of life for that year. I truly know how you feel. I finally resorted to ureter surgery and to make a long and painful story short, it failed. Now I am left with a nephrostomy and I can honestly say it's not so bad. Definitely better than stents. If you want more info feel free to email me. Good luck to you. Susan

Rosesforever's picture
Posts: 45
Joined: Sep 2018

This is a nightmare. I have emailed you I have so many questions.  Thank you again. 


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