Putting us on a map. And giving the stage you were diagnosed with as some are doing now.
Comments
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On the Map
Frankford, Ontario, Canada
Great site!!!!! I've read so many stories and cried along with all of them!! My heart goes out to so many!! I live in Frankford,Ontario,Canada. Was diagnosed with uterine cancer in October of '08. Stage 2B..moving from uterus to cervix and some cells found on my bladder. Complete hysterectomy in Nov 08, 33 radiation treatments Jan-Feb 09, 4 chemo treatments Mar/Apr/May/June. Hysterectomy was a no-brainer....GET IT OUT, radiation to concentrate on cells found around bladder. My choice was to have chemo...they weren't sure if any cells were "washed" away at time of operation, although they said chance was small....I didn't want to take any chances. I guess, fingers crossed, I am one of the lucky ones. Time will tell. Operation wasn't a piece of cake, but I healed well and quickly thanks to the support of my family. Radiation was just fine other than the 2 hour return trip to Kingston. Chemo was another story altogether...SICK for 10 days afterwards, but it's over....but now side-effects? Achy muscles and bones, stiffness and I feel like I have allergies or like I'm coming down with the flu all the time, but I don't get sick...also, still a ringing in my ears and never mind the weight gain!! So glad I found all of you!!! Boop0 -
For Celiacleo said:On the map
Ngunguru, Whangarei, NZ. Most appreciative of this informative site.
Stage 3/4 carcino/sarcoma of endrometrium with pelvic and para-aortic lymph nodes and left VUJ bladder metastates. Just received unchanged scan...two years and dancing!
Celia
So happy for you....good health and happiness to you!! Boop0 -
On the Map
I am in San Francisco, CA and was diagnosed with endomentrial adenocarcinoma Stage 1C. A vaginal hysterectomy was performed, no nodes taken, no radiation/chemo. 2 years later, an excruciating pain in my groin turned out to be a recurrence in a lymph node.
Scheduled for surgery to remove node on 10/12, but am totally blown away by what I have read about the prognosis for recurrent uterine cancer. My doctor didn't give me a prognosis when asked, which I thought was a little suspicious. Guess he doesn't want me to focus on anything other than the surgery. He obviously doesn't know me well yet!
I am devastated and looking for anyone who can provide some hope, as I am a single Mom with a 6 year old son that I want to be able to raise to adulthood.0 -
Do Not PanicUnprepared4this said:On the Map
I am in San Francisco, CA and was diagnosed with endomentrial adenocarcinoma Stage 1C. A vaginal hysterectomy was performed, no nodes taken, no radiation/chemo. 2 years later, an excruciating pain in my groin turned out to be a recurrence in a lymph node.
Scheduled for surgery to remove node on 10/12, but am totally blown away by what I have read about the prognosis for recurrent uterine cancer. My doctor didn't give me a prognosis when asked, which I thought was a little suspicious. Guess he doesn't want me to focus on anything other than the surgery. He obviously doesn't know me well yet!
I am devastated and looking for anyone who can provide some hope, as I am a single Mom with a 6 year old son that I want to be able to raise to adulthood.
You said you had endometrial adenocarcinoma, the prognosis for that particular form of uterine cancer is VERY GOOD! Most of the girls, ladies women, whatever we are here, have uterine papillary serous carcinoma a close relative to ovarian cancer with a similar bleak prognosis in some cases. I didn't see anywhere that you have this particular form of uterine cancer so don't be freaked out by what we're talking about. This is a cancer that only occurs in less than 10% of uterine cancers.
Ask for you lab report on the operation to see exactly what type of cancer you have if you haven't already.
I imagine you'll see your grandchildren with that particular form of uterine cancer.
It's very possible that your doctor dropped the ball so to speak in not offering any further treatment with stage lC.
Others will be responding soon and I would guess they will say something similar to this.
Have some tea, play with your son, cry, watch a movie.
You can reach me at 947-517-9417 or
claudiaallen27@yahoo.com in the subject line write UPSC or uterine so i know it's not spam.
As always, love, hope, health, success and joy to us all,
Claudia0 -
Lots of hope and cures are out there.Unprepared4this said:On the Map
I am in San Francisco, CA and was diagnosed with endomentrial adenocarcinoma Stage 1C. A vaginal hysterectomy was performed, no nodes taken, no radiation/chemo. 2 years later, an excruciating pain in my groin turned out to be a recurrence in a lymph node.
Scheduled for surgery to remove node on 10/12, but am totally blown away by what I have read about the prognosis for recurrent uterine cancer. My doctor didn't give me a prognosis when asked, which I thought was a little suspicious. Guess he doesn't want me to focus on anything other than the surgery. He obviously doesn't know me well yet!
I am devastated and looking for anyone who can provide some hope, as I am a single Mom with a 6 year old son that I want to be able to raise to adulthood.
I had uterine endometrial cancer Stage 3C. When I had my hyst the surgeon also removed 25 lymph nodes that thankfully were negative. After 6 chemo tx, 25 external radiation tx and 3 brachy therapies I am cancer free. I hope you are going to a surgeon that is a Gyn oncologist. You should have had a scan, either a Pet scan or Ct scan to evaluate if there are any other nodes or areas ie. bladder, colon that need to be looked at more closely.
When the surgeon is doing surgery to remove this node, he should also remove other nodes near and far from this one to get a more definitive diagnosis. You should not have to go through surgery with general anesthesia for the removal of one node.
Your Dr may not be able to give you a true diagnosis now, but he should be able to discuss any concerns that you have. If he can not or will not, it is time for a second opinion. It might be time to change to a dr that is more open and can answer any questions or concerns you may have. Bring paper and pen with you with all your questions. Do not leave the office until you have asked them all and understand the answers. Personally, I brought a digital tape recorder ($30.) to every appointment and reviewed and wrote things down when I got home. I was surprised at how much I did not retain of the conversation. Stress!
You say you are from the San Francisco area. We may have other sisters out there that can recommend Drs to you. Ladies do you know anyone?
Debbie0 -
Mapbella09 said:On the map
Colorado Springs, CO
I spend the summers in Quincy Illinois and the winters in Treasure Island Florida.
Have Stage III-C UPSC,
Had abnormal PAP test (no symptoms) in October 2008, followed by endometrial biopsy.
Had DaVinci Robotic total hysterectomy (tubes, ovaries, omentum biopsy, 25 lymph nodes) in January 2009
Started chemo January 2009, 3 weeks after surgery.
Had 3 chemo treatments (Jan, Feb, March), then has 28 external radiation treatments followed by one internal radiation treatment (28 hours long) (April thru May 2009)
Followed by 3 more chemo treatments June, July Aug. Last chemo in August 2009.
Will have lab every 2 months and Cat scan every 3 month for follow-up. CAT scan at completion of chemo showed NED. CA-125 normal.0 -
On the MapUnprepared4this said:On the Map
I am in San Francisco, CA and was diagnosed with endomentrial adenocarcinoma Stage 1C. A vaginal hysterectomy was performed, no nodes taken, no radiation/chemo. 2 years later, an excruciating pain in my groin turned out to be a recurrence in a lymph node.
Scheduled for surgery to remove node on 10/12, but am totally blown away by what I have read about the prognosis for recurrent uterine cancer. My doctor didn't give me a prognosis when asked, which I thought was a little suspicious. Guess he doesn't want me to focus on anything other than the surgery. He obviously doesn't know me well yet!
I am devastated and looking for anyone who can provide some hope, as I am a single Mom with a 6 year old son that I want to be able to raise to adulthood.
Hi:
I was also diagnosed as stage 1C Endometrial Cancer with not further treatment on Aug 26th. Fortunately, I had Robotic surgery and ten nodes were removed during surgery (all negative). However, I am in the process of getting a second opinion. On Oct 1st, I have an appointment at the Moffitt Center in Tampa, FL. They are also going to review my slides from my D&C and surgery. My D&C showed Grade 3 and my surgery showed Grade 2 cells.
Susie0 -
The Mapsusie1143 said:On the Map
Hi:
I was also diagnosed as stage 1C Endometrial Cancer with not further treatment on Aug 26th. Fortunately, I had Robotic surgery and ten nodes were removed during surgery (all negative). However, I am in the process of getting a second opinion. On Oct 1st, I have an appointment at the Moffitt Center in Tampa, FL. They are also going to review my slides from my D&C and surgery. My D&C showed Grade 3 and my surgery showed Grade 2 cells.
Susie
Aloha All
Stage 1A, Grade 3 UPSC; 8 cycles Carbo/Taxol (last dose 11/26/08); TAH etc; 33 lymphs nodes,3 abdominal washings, all negative
Waikoloa, HI (Big Island); treatment at Kapiolani Women's Cancer Center, Honolulu, HI
Mahalo (thanks) for being here
Marie0 -
Map
My name is Lori.
I currently live in Warren Pennsylvanina....the middle of nowhere! I have just been diagnosed so I don't have a stage or grade yet. I'll know more after my surgery on the 13th.
I have lived in Dalls, TX, Sheffield PA, Charleston SC, Brockport NY, I spent some time in San Antonio TX, Champaign, IL and Washington DC but never really lived there. I can't call 1-2 months living there!!!
Lori0 -
On the Maploril7 said:Map
My name is Lori.
I currently live in Warren Pennsylvanina....the middle of nowhere! I have just been diagnosed so I don't have a stage or grade yet. I'll know more after my surgery on the 13th.
I have lived in Dalls, TX, Sheffield PA, Charleston SC, Brockport NY, I spent some time in San Antonio TX, Champaign, IL and Washington DC but never really lived there. I can't call 1-2 months living there!!!
Lori
Deanna
Diagnosed Sept 2008 Mixed Endometrial and Uterine Papillary Serous Adenocarcinoma
Stage IIIC with mets to 1 pelvic lymph node
I live in Fair Grove, Missouri which is a suburb of Springfield, MO. Roughly an hour North of Branson, MO.0 -
Mapdeanna14 said:On the Map
Deanna
Diagnosed Sept 2008 Mixed Endometrial and Uterine Papillary Serous Adenocarcinoma
Stage IIIC with mets to 1 pelvic lymph node
I live in Fair Grove, Missouri which is a suburb of Springfield, MO. Roughly an hour North of Branson, MO.
Laurie
From Massachusetts....Diagnosed with Endometrial Adenocarcinoma Stage 1/Grade 2 on September 18,2009. Total Hysterectomy via DaVinci Robot on October 13th. Condition restaged to stage 3/grade 2 after the removal of 1 Lymph Node (positive)in my Cervix. Pelvic Washing from surgery as well as PET scan done day after surgery were clear. Chemo/Radiation consult scheduled for 11/17.
Being treated at the Brighan & Women's Hospital/Dana Farber Cancer Institute in Boston.0 -
A welcome to newer members to help us get to know you better.
COULD SOME OF THE PEOPLE RECENTLY TO THE SITE ADD THEIR NAMES, STAGES, GRADE AND WHERE THEY LIVE? You can also review this thread to see what's been other people's experiences.
Welcome and sorry this how we have to meet.
Claudia0 -
Jill, NYC, UPSC Stage 1acalifornia_artist said:A welcome to newer members to help us get to know you better.
COULD SOME OF THE PEOPLE RECENTLY TO THE SITE ADD THEIR NAMES, STAGES, GRADE AND WHERE THEY LIVE? You can also review this thread to see what's been other people's experiences.
Welcome and sorry this how we have to meet.
Claudia
confined to a polyp. I completed six rounds of carbo/taxol and five vaginal brachytherapy treatments. On Tuesday, I had my one-year checkup; and I am fine, with a CA-125 of 5.0 -
Map Dotscalifornia_artist said:A welcome to newer members to help us get to know you better.
COULD SOME OF THE PEOPLE RECENTLY TO THE SITE ADD THEIR NAMES, STAGES, GRADE AND WHERE THEY LIVE? You can also review this thread to see what's been other people's experiences.
Welcome and sorry this how we have to meet.
Claudia
Northwest corner of Upstate South Carolina for 30+ years; coastal Southern California for 14 years;, Pacific Northwest Washington, Germany and numerous other Army Brat duty stations as a child.
I am now 59 years old, widowed 7 1/2 years and remarried to a super guy from Raritan, NJ.
Oct. 13, 2009: Initial diagnosis of Grade 2 endometrial cancer cells in biopsy. Pap smear negative.
Nov. 17, 2009: Radical hysterectomy. Staged as 1c with clear margins in the myometrium. Negative paths on 14 lymph nodes, peritoneal wash, ovaries, cervix and vagina (fallopian tubes already gone years ago.)
Turned down "preventative" pelvic radiation after surgery. No further treatment other than paps and pelvics every 3 months for next 2 years; 6 months following 3 and yearly after 5.
Maintaining body health with diet, exercise and other alternative therapies. Won't guarantee that it doesn't come back, but then nothing is.
I intend to be here long enough to be a pain to my kid's kids.
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Welcome, although you've been around a bit, eh?Outlaw_Josie said:Map Dots
Northwest corner of Upstate South Carolina for 30+ years; coastal Southern California for 14 years;, Pacific Northwest Washington, Germany and numerous other Army Brat duty stations as a child.
I am now 59 years old, widowed 7 1/2 years and remarried to a super guy from Raritan, NJ.
Oct. 13, 2009: Initial diagnosis of Grade 2 endometrial cancer cells in biopsy. Pap smear negative.
Nov. 17, 2009: Radical hysterectomy. Staged as 1c with clear margins in the myometrium. Negative paths on 14 lymph nodes, peritoneal wash, ovaries, cervix and vagina (fallopian tubes already gone years ago.)
Turned down "preventative" pelvic radiation after surgery. No further treatment other than paps and pelvics every 3 months for next 2 years; 6 months following 3 and yearly after 5.
Maintaining body health with diet, exercise and other alternative therapies. Won't guarantee that it doesn't come back, but then nothing is.
I intend to be here long enough to be a pain to my kid's kids.
You probably already know that with a Stage 1, grade 2, confined to the uterus, that your choice of action is well supported. Two quick questions, did they do p53 staining and do you know if you are, within the Stage 1, an A, B, or C?
Like how outspoken you are. Thanks for joining us.
Claudia0 -
Stage 1 Ccalifornia_artist said:Welcome, although you've been around a bit, eh?
You probably already know that with a Stage 1, grade 2, confined to the uterus, that your choice of action is well supported. Two quick questions, did they do p53 staining and do you know if you are, within the Stage 1, an A, B, or C?
Like how outspoken you are. Thanks for joining us.
Claudia
It was C because it had gone 80% into the myometrium...no evidence of breach to the serosa. I can't answer about the staining, he didn't mention it and I didn't know to ask until recently. It's on my list for the next visit. (I'm still participating in our daily "turn it on" visual anyway.)
Outspoken? Yup...that would be me...not much on finesse...just tell it like it is. (though I do try very hard to be gentle with folks who need a softer touch.)
My own outspokeness is one of the reasons I like my gyn/onc doc's "Dr. Phil" attitude. He and me agreed that there just wasn't enough study evidence in my case to support the adjunctive radiation. He said that his experience was that it didn't affect the overall survival rate (which is high for cancers) AND, that it would negate the use of it again should it recurr in the pelvic area. I want the whole arsenal if I need it later.0 -
My Dot
Western Kansas
After not going to the ob/gyn for 8 years, I was given a "routine biopsy" because of some bleeding/spotting I had had for a few months (I'm a very patient person). My doctor called me in shock saying it tested positive for cancer and giving me the choice of either getting pregnant (since I was 28 and single) or having a hysterectomy then. Since I had no prospects in my life to have children with, we set the hysterectomy for the following week after sending my biopsy for a second opinion and receiving the same results. She also told me that I had Poly-cystic Ovarian Syndrome which probably is the main reason that this had happened. They ended up taking my ovaries and uterus but kept most of my cervix because it looked okay and tested fine when they took washings of it. They also tested my other organs near the uterus that also tested fine. They staged me at IB because the Endometrial cancer had gone into the wall of the uterus but had not yet made it through. Since then I have had 3 month check ups that became 6 month. This past February however my routine pap came back abnormal and the doctor did a cold knife cone to remove as much as the cervix as possible, she also cauterized the vagina in hope of getting anything that would cause problems in the future. When my next pap also came back abnormal in Sept, I was referred to a gyn/oncologist who thankfully found no reason to treat me but I saw him again this last week for a follow up. He again has found nothing to be concerned with and now we are waiting for results from the pap that he took and sent to his lab. He stated that sometimes labs see the history of a patient and are overly careful when there is no need.
Well now I'm waiting... Hard to believe that this stuff is haunting me again. I thought the worst was being told at 28 that if I didn't have them then that I wouldn't have my own kids. Now I'm 33 and wondering what else is in store for me?
After seeing other posts, sometimes I feel like I'm worrying over nothing. But honestly after seeing the courageous people on here has given me a lot of strength I didn't know I had. Thank You 0
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