Lots of new ladies - let's have a roll call

First Post

I have been reading posts since Jan 2016 when I found this site but have never posted.  I thought I would provide my situation in case it could benefit others.  

I was diagnoised in Dec 2014 post D&C.

After surgical staging in Jan 2015, diagnosis was Figo stage IIIC1 - endometrioid adenocarcinoma, Figo grade 1, type 1, 1 cm tumor invading 1mm of 15mm in average thickness endomyometrium. 1 (of 6) positive lymph node. Lymph-vascular invasion present. TNM stage: pT1aN1.  

Treatment was surgery followed by chemo (pac/carbo), 25 external RT fractions, chemo (pac/carbo)  --  sandwich treatment -- Feb -> July 2015.

My journey is documented in my profile.

So I have the "garden variety" but I don't see too many other ladies with with this type and stage.  Hopefully, they are all doing well.  If there are others out there, I am interested in how you are doing regarding recurrance and whether you have experienced any long term side effects such as leukemia, sarcomas, pelvic insufficiency fractures, etc

P

No story, numbers, staging, grades yet

I'm one of the very newest, but wanted to participate in the roll call.  I'm Pam from the Raleigh/Durham, NC area.   

Had a biopsy on 11/30 and was told the cells were cancer - well differentiated - that's ALL I know at this point.  Appt. with gyn/onc on 12/20.

MAbound said:

Well Differentiated Cells

Getting told your biopsy indicates you have cancer is bad, but finding out you have well-differentiated cells is an encouraging thing to know. It means your cancer cells are more like normal cells than tumor cells at this point and what you have is usually graded as a 1 out of 3. It hopefully means that your cancer has been caught before it could progress to a higher grade or spread. Don't quote me on that, but that's my understanding. Nothing is certain until you actually have surgery and get your final pathology report, but there's good reason to stay calm while you wait for things to progress. Hang in there!

while you are correct that

while you are correct that well differentiated is a good thing, it is the fact that they are more not normal than normal that makes it good news. Treatments work better on cells that are easier to identify as cancer. Hope that makes sense.

Cookie and ToucanTango Welcome to you both

Thank you so much for posting and sharing your stories.  You absolutely have found a wonderful place to link arms and join in the journey together.  It is so nice to find out there is a place where people speak this new language and KNOW what you are talking about- where you don't have to be afraid to ask the hard questions or vent the "whatever" because everyone is either going through it or has been there and some more than once.  Please keep us posted and know you'll be in our thoughts and prayers.  (((HUGS)))  PS  Cookie- we have several daughters here- it's fabulous that you are finding support as you help your mama!  You need it too

Roll Call

Happy Holidays to all,

Just want to say I am grateful for all who post. This is where you will find the honest answers to your questions that the docs are not always forthcoming with. I was diagnosed this past August 2016, two months after my husband and I retired, with Grade 3, Stage 1a, endometrial adenocarcinoma, Clear Cell. Radical hysterectomy with sentinel lymph node mapping, only removing 3 lymph nodes, all negative, negative wash, all contained within uterus no invasion of the myometrium. The caveat to the diagnosis is the fact that is "clear cell". Since it is rare and there are almost no reliable statistics, the cancer industry looks at the cancers that mirror the histology of the clear cell and use the protocol for those cancers such as ovarian. My treatment: 6 rounds Carbo/taxol, every 3 weeks, 3 vaginal brachy therapy treatments. Unfortunately, I have had so many side affects from the chemo (currently just completed round #3 with a reduction of 20% on the dosing of the Taxol) that I am seriously considering stopping at #3 since the reduction on the Taxol had no affect on the affects that followed. Most recently what was to be my final brachy therapy had to be postponed until after this Monday when I see my surgeon. My radiation doc found "vaginal mucositis" and would not do the radiation. So the saga continues but I will get through it and look forward to a more positive 2017. Already planning another trip back to Scotland, my ancestoral heart and soul. Thanks for listening and all the valuable information from all who post, it has helped me tremendously make some very important decisions.  Di (aka Bee, my grandma name, long story, lol)

Roll Call

Hello ladies! I was diagnosed May 2009 at the age of 53 yrs (4 years after my 72yrs old Mom died from the same type, stage and grade of uterine cancer). I had endometrial adenocarcinoma 2B with cervical involvement.   My risk factors include never having a pregnancy,  tall in height, and a bit overweight starting about age 45 yrs ( according to insurance tables).

I live in the Twin Cities area in Minnesota.  Treated and cared for by the University of Minnesota Women's Cancer Center. Surgery included total hysterectomy, tubes & ovaries,  removal of omentum, 26 lymph nodes, and para aortic node June 6, 2009. 

Chemo protocol was carboplatin/taxol..."sandwich" protocol meaning 3 rounds spaced 21 days apart, then

28 external radiation treatments and 3 internal brachy radiation treatments Followed by another 3 rounds of the carboplatin/taxol.

I developed neuropathy in my hands and fingers which of course I still have (as many of us do). In addition I have 

lymphadema in my pelvis which also causes issues with swelling in my ankles.  I am physically active but do have issues with fatigue and chemo brain sometimes. 

No complaints because I survived and am extremely thankful for every second I am alive and otherwise in good health. 

I check into this discussion group every so often but don't comment very much. Every person on

this discussion board is a hero and angel to me!!!!  God bless you and your families and friends as we all continue to fight cancer. 

 

Roll Call

Hi there.

Current age: 42

Ethnicity: Asian American

Work Status: On Short Term Disability

July 2014: Biopsy indicates endometrioid adenocarcinoma Grade 1

August 2014: Davinci Total Hysto with Right Salpingo Oophorectomy, Type, grade confirmed. Stage 1A. No further treatment. Observations every 6 months.

Aug. 2016: Saw my PCP for growing belly and bowel issues going on for a month.

Sept. 2016: Transvaginal ultrasound indicates large mass on remaining left ovary.

Oct. 2016: Laparotomy which removed the following: large tumor (12cm x 9cm x 6 cm) and ovary, 6 inches of sigmoid colon (tumor was stuck to it). A few lymph nodes. Omentum. Appendix. Ascites. Pelvic wash. Biopsies in upper quads. Findings: Ovary had endometriosis and cysts along with same tumor type from first cancer. Tumor was stuck to my left pelvic wall and sigmoid colon. All biopsies and washes were negative. Surgery damaged the nerves in my left pelvic area. Still have numbness in that area and have limitied motion.

Nov. 2016: Various tumor boards couldn't agree with the origins of this cancer - did it arise from endometriosis and is therefore a second cancer or is it a recurrence from original cancer? Recommended two phases of treatment with a few weeks breaks between the two: (1) 2 rounds of cisplatin along with 28 days of daily external radiation and (2) 4 rounds of Carboplatin and Taxol every 3 weeks. Cisplatin knocked me out for 2 weeks. I was miserable and a weeping mess. I'm still a weeping mess. Keeping up with hydration requirements (2-3 quarts a day) was a lot harder than I thought. Ended up getting hydrated via IV once. Also weakened my left leg further and both legs tingle to the point I have trouble falling asleep at night. Not sure if that's the radiation or the chemo. Also, bowel movements are out of control. The nausea has not ended as I head into the second round of chemo and I'm dependent on my Ativan. Also losing my pubic hair. 

Dec. 2016: About to start second dose of cisplatin this week with two more weeks of radiation. Really unhappy about it. I now know why people refuse chemo. This is truly a brutal existance and I have 4 more chemo rounds in the next phase. I don't know how you ladies do it. I try to think about the love of my life - my 3 year old niece who I adore and who adores me - when I hit my lows and sometimes it's not enough.

Roll Call

I was diagnosed at 61 with UPSC stage IVB (adenocarcinoma) at the end of March, 2010.  I had a total abdominal hysterectomy, bilateral salpingo-oopherectomy, omentectomy, iliectomy, cholecystectomy (for gallstones) and an appendectomy all in one big surgery in June, 2010.  I was in the hospital 6 days.  I was supposed to have a robotic hysterectomy and go back to work in 2 weeks, but my GYN/Onc. announced the day of surgery that after looking at my CT scan from another hospital, my cancer was more extensive than he'd thought, so he couldn't do it robotically.  I had two units of blood a couple of days after surgery because I had lost so much during the surgery.  I had 6 rounds of carboplatin and taxol, ending in Sept., 2010, and I didn't get asked to have any radiation, probably because the cancer had been so widespread. I refused the Neulasta shot since it had a risk of causing heart attacks and my little brother had just died from having had one the week before.  I eventually had another transfusion, which didn't make me feel one bit better.  I later found out that I had hemochromatosis (my body couldn't get rid of excess iron because of a genetic abnormality and I was storing way too much iron).  I had two phlebotomies the following Jan. and Feb. (just after being diagnosed with hemochromatosis) to get rid of the excess iron, then I was supposed to have another, but I was sick.  It turned out that I was already anemic, probably from how the chemotherapy had affected me (my body didn't react normally to the phlebotomies).  I couldn't have another transfusion, so I just had to take it easy until my blood count built up again. I've been NED ever since surgery and chemo.  I did have one scare.  I had some abdominal pain and my family doctor's office ordered a CT scan.  That showed a mass in my paracolic gutter (located near my spine), so I was sent for a PET scan, which showed the same mass.  Of course, I thought my cancer was back, but after two more CT scans 3 months apart and a final one 6 months later, my GYN/Onc. told me he didn't know what the mass was, but it couldn't be cancer because it hadn't grown.  One of the nurse practitioners in his office said it might be fluid from having had my lymph nodes removed.

I am now 68, 6 years out from having completed chemo.  My CA 125 before surgery was 94.  It's been running in the 7's most years, then a couple of 6's.  This past June it had gone up to the 9's.  I was reassured that this meant nothing, but it worries me a little, since it's the highest it's been since chemo ended.  I haven't been scheduled for my next appointment yet, but I expect to get a call asking me to come in to my oncologist's office in Jan., or maybe it will be Feb. since my cancer center has gotten really busy.  I see my GYN/Onc. once a year and 6 months later, I see my oncologist/hematologist.  I had my surgery at one hospital and had my chemo at the hospital where I'd worked, closer to home.  I live in a small Revolutionary War town in upstate NY, about an hour from Vermont, and 45 minutes north of Albany.  My GYN/Onc., who's been wonderful to me, is in Albany.  His partner, who was supposed to be the expert, is retiring this year.  They do a huge business, so I hope things don't get too crazy there. I normally have 45 minutes to an hour and a half waiting times as it is.  People come from long distances to see them as there aren't any other GYN/Oncs in the area.  I'm pleased to have been in remission for so long, and I hope I can stay that way.  My mother got breast cancer twice, ten years apart, so I'm always expecting something like that to happen with mine.  Her mother also had breast cancer, which was bilateral, in both breasts at the same time.  It always pays to stay wary of any changes in my body. My father had prostate cancer and a half sister had lymphoma.  Cancer definitely runs in the family. I was tested for Lynch Syndrome but came up negative.  I wanted to be tested for the breast cancer genes, but my insurance wouldn't cover that test.   

roll call

I'm Cindi, 59 years old from Inverness, FL. My diagnosis was uterine pappilary serous carcinoma (UPSC) Stage 1A, Grade 3.

Surgeries: D&C with a polyp removed that had a mixed result of endometriod and serous cancer.  Davinci full hysterectomy, XX lymph nodes, 0.7 cm tumor that was completely serous with only 2 out of 12 penetration into the wall- July, 2015

Frontline: Chemo - Carbo/Taxol - Started out weekly and requested a change to every 3 weeks after the first 6 weekly treatments. Then, brachytherapy.

I consider myself NED since surgery. However, my surgeon starts the count after the last treatment. I finished chemo 12/21/15 and radiation 1/28/16.

My next scan will be sometime this month but is yet to be scheduled.

I'm feeling better every day. Neuropathy has improved a lot but is still hanging around in my feet and fingertips. My energy level is not back to pre-cancer levels but is pretty darn good most of the time. I wake up happy every day and so grateful for my life.

Love and Hugs to all,

Cindi

 

 

 

 

CheeseQueen57 said:

Roll Call

I'm Susan. I was diagnosed with Stage IIIc, Grade 3 uterine carcinoma after a total ab hysterectomy on St Patrick's Day 2016. I live just outside Philadelphia. 

I completed 14 weeks of a planned 18 weeks of taxol/carbo and I had to stop because I suffered a mild stroke. I completed 28 days of external radiation and 3 session of internal radiation. I completed my frontline therapy in October 2016. My next CT scan is in February. 

I continue to have swelling of my optic nerves in both eyes since August. We're not really sure the cause but we don't think it's cancer related. I still have some neuropathy in my toes and quite a bit of fatigue. I'm anxious for my hair to grow back. Trying to get my life back. 

Roll Call

I'm Lydia. I was diagnosed with stage 3b endometrial (uterine)  cancer. I'm recieving sandwiched chemo/radiation therapy. I am finishing my 3rd round of chemo and radiation is next. Even though chemo had it's moments I'm dreading the radiation. I'm to have external and internal. I too, have neuropathy in my toes and fingers. I was diagnosed with diabetes the day they found my cancer. Fortunately for me it wasn't yet to bad out of control and am controlling it with 5mg of glyburide daily. I also miss my hair, but get to wear alot of different head gear now. I wish you the best and good luck with the ct scan.