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Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatment?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

We have so many wonderful new people posting and I have been so busy with treatments and trying to keep my head above water at work. I am afraid I haven't really welcomed everyone (I APOLOGIZE; you can't possibly KNOW how glad I am that you all have found us!), and I am having trouble keeping everyone straight in my poor chemo-brained head.

So could you each just post under this thread with the name you'd like us to call you, what your cancer diagnosis is (if you have it yet), and where you are in your treatment. And if you want to say where you live, that would be cool too. I'll start it off:

Linda Procopio:
Stage III-c UPSC, radical hysterectomy 10/10/09; just finished 6 rounds of carboplatin/paciltaxol (sp?); with 8 weeks of radiation coming up after I recover from the chemo. I live in central Pennsylvania.

kathijr
Posts: 11
Joined: Jul 2010

I have not posted here for a very long time due to three different hospitalizations and two surgeries since the end of August. I live in Madison, Wisconsin and am receiving treatment at the Carbone Cancer Center at UW Hospital. I was diagnosed with Stage 1B endometrial cancer that required no chemotherapy or radiation and just had a positive follow up appointment. Following my hysterectomy, I developed peritonitis, and then a bowel obstruction, which required surgery. I am finally feeling great again and it's wonderful to be able to do everything I want to do without pain, fatigue, or any type of discomfort. I also attend a twice monthly support group at the center for women with gynecological cancers and they are all wonderful (many are ovarian cancer survivors and have really been through so much.)

I wish everyone on this board the best. Thank you for all of your kind support of me when I was initially diagnosed.

lkchapman's picture
lkchapman
Posts: 103
Joined: Jan 2011

Hi,
My name is Laura and I am 47 years old and live in the Houston area. I was diagnosed with Stage IIIC2 80%high grade papillary serous/20% endometrioid carcinoma on 1/28/09 after being misdiagnosed with uterine fibroids for 5 years. My last pap 6 months before I found out I had cancer was ASCUS and my gyno never told me. I only found out when she gave me my records to go to my oncologist. After my hysterectomy I underwent 5 weeks of extended field radiation with 3 HDR brachytherapy treatments combined with cisplatin, then 6 rounds of carbo/taxol combination at MD Anderson ending in August of 09.
Currently I am disease free, but I am finding the follow ups hard to take. I get so crazy in the weeks before my onc visit I sometimes feel like stopping the followups all together. But then I really would be crazy!
I wish I had found this discussion board sooner, as it has really helped hearing other stories like my own. It has made the journey a lot easier.

sleem
Posts: 92
Joined: Feb 2010

Hou at MDA too. 1st doctor screwed up at another institution before I took myself to MDS.
Hang in there with chemo...& raditation..everything I've read says that is the way to go...I'm not on this site often...yet I think of all my sisters who are fighting this too. Finished with all my stuff...hair back etc. I get worked up before check-ups also...I think most of us do...please know that is the only way we can get from point a to b. I take book, get on email while waiting for visit..ask for friends to pray for me before, etc. During chemo, I tried to take things with me so if I felt like it, I had something to keep my mind busy... My next visit is this month..

Harrber's picture
Harrber
Posts: 9
Joined: Feb 2011

I am Harriet - I live just outside of Boston and am being treated at Dana-Farber. I am a clinical psychologist and have spent much of my career working with people with cancer. I just stepped down from a position at a cancer support agency, feeling that it is time to not have cancer be a 24/7 presence in my life both personally and professionally.
I was diagnosed in December 09 with a Grade 3 endometrial CA which, after complete hysterectomy (including omentum) was revealed to be Uterine papillary serous cell combined with some endometroid cells. My surgery showed the CA was 90% thru the uterine wall, had invaded the cervix and the abdominal wash was positive for one cell. Lymph nodes were clear at that point. The staging was confusing as the FIGO system had just been revised - so initially I was a Stage 3a I believe, but I was moved up to 2c - Unfortunately, it seems I did not stay there very long.
Given the pathology, I was treated with 4 rounds of carboplatin/taxol, followed by 6 weeks of pelvic radiation and then 4 brachytherapy treatments. I finished treatment in July, and slowly have begun to feel better - the pelvic radiation left me with a rather "funky" colon - which I expected - it is not as bad as I had feared, but it is unpredictable and acts up in a seemingly random manner. Learning to live with that.
I am followed every three months - alternating the surgeon and oncologist. I have CT scans every 6 months - the first, in August, right after treatment, was clear. My CA 125 has never been that high - it was in the high 20s right after surgery and gradually came down to about 17. Then it went back up to 29 and is now 30. The CT scan last week showed some questionable para-aortic lymph nodes and one superclavicular lymph node. I have a PET scan scheduled this week and of course am totally thrown by this happening so soon after treatment which I know is not good. But trying to just stay in the moment and not make any assumptions - hard to do. It is so helpful to hear from others who have been down this road and are learning to live with the potential chronicity of this disease.
I was treated for a stage 1 high grade breast cancer 12 years ago and have had no recurrences from that. It was a triple negative cancer - not estrogen, progesterone, or Her2 positive - so after treatment I did not have hormone treatment of any kind (e.g. tamoxifen). My doctor has told me that this high grade UPSC is also not estrogen-related. Lucky me, I get the atypical cancers.
While I was in treatment, my sister, who had been living with a brain tumor for three years, had a rapid decline and died in May. I spent the weekends in between treatments going to New York to be with her. I am still recovering from all of that and now seem to have this new challenge to face.
Needless to say it has been a rotten year. But - I have a terrific family and they have been there every step of the way. And a two year old granddaughter has provided the hope and joy that I so need.
It is good to meet all of you - and for those of you with UPSC - it is really good to connect since it is hard to find people with this diagnosis and I find people don't really understand it since it is very different from what they know of uterine cancer.

sleem
Posts: 92
Joined: Feb 2010

TX
UPSC Stage 1 Grade 3 comfined in uterus, no invasion, one polyp, full 9 yards surgery, no node spread from any surgery taking, did washing, etc. MD Anderson Surgery age at surgery 59.. 9-2008, cuff radiation, 6 chemo (carboplatin/taxol every 21 days)...2 yr survivor/ also sadden by lack of information provided to us women for pre-cancer signs, demographics, etc. when we attend our well woman visits.

I've thought of us joining in our background stats that accompany getting this. I'll give mine:
I now know some of this data are similar for cancer patients with uterine and ovarian. Check out known common symptoms for patients like us on line.
Perhaps, we might discover some other common factors between us not yet put together to help future women. Perhaps you can copy this and put your data in to same format?
Just a suggestion...I hope that we can help doctors help us and others.

Before diagnosis history:
• Caucasian
• Post-menopausal
• Early menses: age 10
• Late menopause: 52
• 2 kids-normal births/vaginal
• No breast feeding
• Birth control pills –about 8 years. Before I was 30
• No hormone replacement
• Over weight as kid from about age 11-18 mid about 15lbs over, not as adult
• One uncle with several cancers- one type was colon cancer
• Never any menopausal bleeding after stopping periods

Particular to me:
• Severe migraines with periods from mid 30’s until after menses, no migraines
• One month my period stopped, I never had really any hot flashes, and never had any bleeding of any kind until right before my surgery for UPSC
• Large fibroids from my 30’; shrunk after menopause
• Regular periods
• One D&C in mid 30’s
Never smoked

I sailed along through menoopause and then... years later...

It was painful intercourse that showed my first concern. Then many months later, some spotting of blood after intercourse. None of these symptoms were related to me as problematic for signs of disease from my doctor.

RoseyR
Posts: 462
Joined: Feb 2011

Dear Linda,

Was recently diagnosed with MMMT endometrial cancer, a very aggressive tumor but caught reasonably early (stage 1B) with clear lymph nodes and no signs of spread.

Had complete hysterectomy at HUP (Philadelphia) and recovered well from it.

Have just finished first three rounds of carboplatin/taxol (with surprisingly little distress!) but must now make hard decision on how MUCH radiation to pursue: just brachytherapy for 3 weeks, or full pelvic radiation (IMRT) for five weeks, five days a week, followed by brachy. Had three different opinions from top oncologists in Phila: Jefferson advised "just brachytherapy because your 18 lymph nodes are clear." Pa. Hospital said "Probably just brachytherapy; it is nearly as effective and has far fewer side effects--although you're healthy and reasonably young enough to withstand full pelvic radiation and just might want to consider it as a backup." My treating radiologist at HUP prescribed both, of course. But worry about cumulative damage to immune system. And for my kind of cancer, all studies show NO survival benefit from radiation, just the ability to limit local recurrence, not a small achievement but one that might not be worth the many side effects, sometimes lasting nearly two years, from EBRT. An getting one more opinion from a very experienced radiological oncologist at Hahneman this week; the other two opinions were from top gynecological oncologists at Jefferson and PA Hospital.

What I fear from even IMRT, which is supposed to minimize immediate side effects, are "late onset effects": the internet i full of testimonials about diahrrea that continues for nearly two years and worse, bone pain in hips or legs, a year after EBRT or even IMRT that make sleeping or even walking painful. My HUP radiologist admitted that nearly ten percent develop hip fractures a year to two later "but that we can treat many of them without surgery." If one is een LUCKY enough to survive for more than eight years, there's also greater risk of a scondary cancer developing by then from so much radiaiton.

I am sorry to bring up these misgivings since I know you're soon starting radiation, but did you research and have to make a hard decision? If I had an office job, the prospect of occasional diahrrhea for more than two months wouldn't be so sobering, but am a college teacher and need to be in a classroom twelve hours a week this fall.

A final question: are you having sandwich therapy (more chemo coming after radiation?.

If so, were you ever told that you had the option of concurrent chemo and radiation? (Just found out yesterday from a chance encounter with my chemo nurse that some who elect pelvic radiation take cisplatin at the same time because it maximizes the effectivenss of the radiation. Never was told this by my oncologist or radiologist!!!

But I also know cisplatin is a harsher drug than carboplatin so I would fear to follow that route. My radiologist also suggests that if I have just brachytherapy starting in three weeks, I could begin my last three rounds of chemo (taxol/carboplatin) at the same time. That would provide no extra pause after my first nine weeks of chemo, which worries me; doesn't the body need time to recover? What kinds of pauses are built into your own regimen, I wonder?

Realizing tht you asked merely for our diagnosis and place of treatment, realize I've gone overboard here, but it's my first post to any individual at this site, making me feel less alone in the challenge we all share.

I find great support and solace in books on nutrition and cancer; the more I read, the stronger I feel as it's one element in this challenge we DO have control over. The best I've read so far is Anti-Cancer by a psychiatrist and scientist who has twice overcome brain cancer via extensive research on nutrition and cancer and Natural Strategies for Cancer Patient by Dr. Russell Blaylock.

Best,

RoseyR

RoseyR
Posts: 462
Joined: Feb 2011

Dear Linda,

Was recently diagnosed with MMMT endometrial cancer, a very aggressive tumor but caught reasonably early (stage 1B) with clear lymph nodes and no signs of spread.

Had complete hysterectomy at HUP (Philadelphia) and recovered well from it.

Have just finished first three rounds of carboplatin/taxol (with surprisingly little distress!) but must now make hard decision on how MUCH radiation to pursue: just brachytherapy for 3 weeks, or full pelvic radiation (IMRT) for five weeks, five days a week, followed by brachy. Had three different opinions from top oncologists in Phila: Jefferson advised "just brachytherapy because your 18 lymph nodes are clear." Pa. Hospital said "Probably just brachytherapy; it is nearly as effective and has far fewer side effects--although you're healthy and reasonably young enough to withstand full pelvic radiation and just might want to consider it as a backup." My treating radiologist at HUP prescribed both, of course. But worry about cumulative damage to immune system. And for my kind of cancer, all studies show NO survival benefit from radiation, just the ability to limit local recurrence, not a small achievement but one that might not be worth the many side effects, sometimes lasting nearly two years, from EBRT. An getting one more opinion from a very experienced radiological oncologist at Hahneman this week; the other two opinions were from top gynecological oncologists at Jefferson and PA Hospital.

What I fear from even IMRT, which is supposed to minimize immediate side effects, are "late onset effects": the internet i full of testimonials about diahrrea that continues for nearly two years and worse, bone pain in hips or legs, a year after EBRT or even IMRT that make sleeping or even walking painful. My HUP radiologist admitted that nearly ten percent develop hip fractures a year to two later "but that we can treat many of them without surgery." If one is een LUCKY enough to survive for more than eight years, there's also greater risk of a scondary cancer developing by then from so much radiaiton.

I am sorry to bring up these misgivings since I know you're soon starting radiation, but did you research and have to make a hard decision? If I had an office job, the prospect of occasional diahrrhea for more than two months wouldn't be so sobering, but am a college teacher and need to be in a classroom twelve hours a week this fall.

A final question: are you having sandwich therapy (more chemo coming after radiation?.

If so, were you ever told that you had the option of concurrent chemo and radiation? (Just found out yesterday from a chance encounter with my chemo nurse that some who elect pelvic radiation take cisplatin at the same time because it maximizes the effectivenss of the radiation. Never was told this by my oncologist or radiologist!!!

But I also know cisplatin is a harsher drug than carboplatin so I would fear to follow that route. My radiologist also suggests that if I have just brachytherapy starting in three weeks, I could begin my last three rounds of chemo (taxol/carboplatin) at the same time. That would provide no extra pause after my first nine weeks of chemo, which worries me; doesn't the body need time to recover? What kinds of pauses are built into your own regimen, I wonder?

Realizing tht you asked merely for our diagnosis and place of treatment, realize I've gone overboard here, but it's my first post to any individual at this site, making me feel less alone in the challenge we all share.

I find great support and solace in books on nutrition and cancer; the more I read, the stronger I feel as it's one element in this challenge we DO have control over. The best I've read so far is Anti-Cancer by a psychiatrist and scientist who has twice overcome brain cancer via extensive research on nutrition and cancer and Natural Strategies for Cancer Patient by Dr. Russell Blaylock.

Best,

RoseyR

RoseyR
Posts: 462
Joined: Feb 2011

Dear Linda,

Was recently diagnosed with MMMT endometrial cancer, a very aggressive tumor but caught reasonably early (stage 1B) with clear lymph nodes and no signs of spread.

Had complete hysterectomy at HUP (Philadelphia) and recovered well from it.

Have just finished first three rounds of carboplatin/taxol (with surprisingly little distress!) but must now make hard decision on how MUCH radiation to pursue: just brachytherapy for 3 weeks, or full pelvic radiation (IMRT) for five weeks, five days a week, followed by brachy. Had three different opinions from top oncologists in Phila: Jefferson advised "just brachytherapy because your 18 lymph nodes are clear." Pa. Hospital said "Probably just brachytherapy; it is nearly as effective and has far fewer side effects--although you're healthy and reasonably young enough to withstand full pelvic radiation and just might want to consider it as a backup." My treating radiologist at HUP prescribed both, of course. But worry about cumulative damage to immune system. And for my kind of cancer, all studies show NO survival benefit from radiation, just the ability to limit local recurrence, not a small achievement but one that might not be worth the many side effects, sometimes lasting nearly two years, from EBRT. An getting one more opinion from a very experienced radiological oncologist at Hahneman this week; the other two opinions were from top gynecological oncologists at Jefferson and PA Hospital.

What I fear from even IMRT, which is supposed to minimize immediate side effects, are "late onset effects": the internet i full of testimonials about diahrrea that continues for nearly two years and worse, bone pain in hips or legs, a year after EBRT or even IMRT that make sleeping or even walking painful. My HUP radiologist admitted that nearly ten percent develop hip fractures a year to two later "but that we can treat many of them without surgery." If one is een LUCKY enough to survive for more than eight years, there's also greater risk of a scondary cancer developing by then from so much radiaiton.

I am sorry to bring up these misgivings since I know you're soon starting radiation, but did you research and have to make a hard decision? If I had an office job, the prospect of occasional diahrrhea for more than two months wouldn't be so sobering, but am a college teacher and need to be in a classroom twelve hours a week this fall.

A final question: are you having sandwich therapy (more chemo coming after radiation?.

If so, were you ever told that you had the option of concurrent chemo and radiation? (Just found out yesterday from a chance encounter with my chemo nurse that some who elect pelvic radiation take cisplatin at the same time because it maximizes the effectivenss of the radiation. Never was told this by my oncologist or radiologist!!!

But I also know cisplatin is a harsher drug than carboplatin so I would fear to follow that route. My radiologist also suggests that if I have just brachytherapy starting in three weeks, I could begin my last three rounds of chemo (taxol/carboplatin) at the same time. That would provide no extra pause after my first nine weeks of chemo, which worries me; doesn't the body need time to recover? What kinds of pauses are built into your own regimen, I wonder?

Realizing tht you asked merely for our diagnosis and place of treatment, realize I've gone overboard here, but it's my first post to any individual at this site, making me feel less alone in the challenge we all share.

I find great support and solace in books on nutrition and cancer; the more I read, the stronger I feel as it's one element in this challenge we DO have control over. The best I've read so far is Anti-Cancer by a psychiatrist and scientist who has twice overcome brain cancer via extensive research on nutrition and cancer and Natural Strategies for Cancer Patient by Dr. Russell Blaylock.

Best,

RoseyR

RoseyR
Posts: 462
Joined: Feb 2011

Dear Linda,

Was recently diagnosed with MMMT endometrial cancer, a very aggressive tumor but caught reasonably early (stage 1B) with clear lymph nodes and no signs of spread.

Had complete hysterectomy at HUP (Philadelphia) and recovered well from it.

Have just finished first three rounds of carboplatin/taxol (with surprisingly little distress!) but must now make hard decision on how MUCH radiation to pursue: just brachytherapy for 3 weeks, or full pelvic radiation (IMRT) for five weeks, five days a week, followed by brachy. Had three different opinions from top oncologists in Phila: Jefferson advised "just brachytherapy because your 18 lymph nodes are clear." Pa. Hospital said "Probably just brachytherapy; it is nearly as effective and has far fewer side effects--although you're healthy and reasonably young enough to withstand full pelvic radiation and just might want to consider it as a backup." My treating radiologist at HUP prescribed both, of course. But worry about cumulative damage to immune system. And for my kind of cancer, all studies show NO survival benefit from radiation, just the ability to limit local recurrence, not a small achievement but one that might not be worth the many side effects, sometimes lasting nearly two years, from EBRT. An getting one more opinion from a very experienced radiological oncologist at Hahneman this week; the other two opinions were from top gynecological oncologists at Jefferson and PA Hospital.

What I fear from even IMRT, which is supposed to minimize immediate side effects, are "late onset effects": the internet i full of testimonials about diahrrea that continues for nearly two years and worse, bone pain in hips or legs, a year after EBRT or even IMRT that make sleeping or even walking painful. My HUP radiologist admitted that nearly ten percent develop hip fractures a year to two later "but that we can treat many of them without surgery." If one is een LUCKY enough to survive for more than eight years, there's also greater risk of a scondary cancer developing by then from so much radiaiton.

I am sorry to bring up these misgivings since I know you're soon starting radiation, but did you research and have to make a hard decision? If I had an office job, the prospect of occasional diahrrhea for more than two months wouldn't be so sobering, but am a college teacher and need to be in a classroom twelve hours a week this fall.

A final question: are you having sandwich therapy (more chemo coming after radiation?.

If so, were you ever told that you had the option of concurrent chemo and radiation? (Just found out yesterday from a chance encounter with my chemo nurse that some who elect pelvic radiation take cisplatin at the same time because it maximizes the effectivenss of the radiation. Never was told this by my oncologist or radiologist!!!

But I also know cisplatin is a harsher drug than carboplatin so I would fear to follow that route. My radiologist also suggests that if I have just brachytherapy starting in three weeks, I could begin my last three rounds of chemo (taxol/carboplatin) at the same time. That would provide no extra pause after my first nine weeks of chemo, which worries me; doesn't the body need time to recover? What kinds of pauses are built into your own regimen, I wonder?

Realizing tht you asked merely for our diagnosis and place of treatment, realize I've gone overboard here, but it's my first post to any individual at this site, making me feel less alone in the challenge we all share.

I find great support and solace in books on nutrition and cancer; the more I read, the stronger I feel as it's one element in this challenge we DO have control over. The best I've read so far is Anti-Cancer by a psychiatrist and scientist who has twice overcome brain cancer via extensive research on nutrition and cancer and Natural Strategies for Cancer Patient by Dr. Russell Blaylock.

Best,

RoseyR

RoseyR
Posts: 462
Joined: Feb 2011

Dear Linda,

Was recently diagnosed with MMMT endometrial cancer, a very aggressive tumor but caught reasonably early (stage 1B) with clear lymph nodes and no signs of spread.

Had complete hysterectomy at HUP (Philadelphia) and recovered well from it.

Have just finished first three rounds of carboplatin/taxol (with surprisingly little distress!) but must now make hard decision on how MUCH radiation to pursue: just brachytherapy for 3 weeks, or full pelvic radiation (IMRT) for five weeks, five days a week, followed by brachy. Had three different opinions from top oncologists in Phila: Jefferson advised "just brachytherapy because your 18 lymph nodes are clear." Pa. Hospital said "Probably just brachytherapy; it is nearly as effective and has far fewer side effects--although you're healthy and reasonably young enough to withstand full pelvic radiation and just might want to consider it as a backup." My treating radiologist at HUP prescribed both, of course. But worry about cumulative damage to immune system. And for my kind of cancer, all studies show NO survival benefit from radiation, just the ability to limit local recurrence, not a small achievement but one that might not be worth the many side effects, sometimes lasting nearly two years, from EBRT. An getting one more opinion from a very experienced radiological oncologist at Hahneman this week; the other two opinions were from top gynecological oncologists at Jefferson and PA Hospital.

What I fear from even IMRT, which is supposed to minimize immediate side effects, are "late onset effects": the internet i full of testimonials about diahrrea that continues for nearly two years and worse, bone pain in hips or legs, a year after EBRT or even IMRT that make sleeping or even walking painful. My HUP radiologist admitted that nearly ten percent develop hip fractures a year to two later "but that we can treat many of them without surgery." If one is een LUCKY enough to survive for more than eight years, there's also greater risk of a scondary cancer developing by then from so much radiaiton.

I am sorry to bring up these misgivings since I know you're soon starting radiation, but did you research and have to make a hard decision? If I had an office job, the prospect of occasional diahrrhea for more than two months wouldn't be so sobering, but am a college teacher and need to be in a classroom twelve hours a week this fall.

A final question: are you having sandwich therapy (more chemo coming after radiation?.

If so, were you ever told that you had the option of concurrent chemo and radiation? (Just found out yesterday from a chance encounter with my chemo nurse that some who elect pelvic radiation take cisplatin at the same time because it maximizes the effectivenss of the radiation. Never was told this by my oncologist or radiologist!!!

But I also know cisplatin is a harsher drug than carboplatin so I would fear to follow that route. My radiologist also suggests that if I have just brachytherapy starting in three weeks, I could begin my last three rounds of chemo (taxol/carboplatin) at the same time. That would provide no extra pause after my first nine weeks of chemo, which worries me; doesn't the body need time to recover? What kinds of pauses are built into your own regimen, I wonder?

Realizing tht you asked merely for our diagnosis and place of treatment, realize I've gone overboard here, but it's my first post to any individual at this site, making me feel less alone in the challenge we all share.

I find great support and solace in books on nutrition and cancer; the more I read, the stronger I feel as it's one element in this challenge we DO have control over. The best I've read so far is Anti-Cancer by a psychiatrist and scientist who has twice overcome brain cancer via extensive research on nutrition and cancer and Natural Strategies for Cancer Patient by Dr. Russell Blaylock.

Best,

RoseyR

RoseyR
Posts: 462
Joined: Feb 2011

Dear Linda,

Was recently diagnosed with MMMT endometrial cancer, a very aggressive tumor but caught reasonably early (stage 1B) with clear lymph nodes and no signs of spread.

Had complete hysterectomy at HUP (Philadelphia) and recovered well from it.

Have just finished first three rounds of carboplatin/taxol (with surprisingly little distress!) but must now make hard decision on how MUCH radiation to pursue: just brachytherapy for 3 weeks, or full pelvic radiation (IMRT) for five weeks, five days a week, followed by brachy. Had three different opinions from top oncologists in Phila: Jefferson advised "just brachytherapy because your 18 lymph nodes are clear." Pa. Hospital said "Probably just brachytherapy; it is nearly as effective and has far fewer side effects--although you're healthy and reasonably young enough to withstand full pelvic radiation and just might want to consider it as a backup." My treating radiologist at HUP prescribed both, of course. But worry about cumulative damage to immune system. And for my kind of cancer, all studies show NO survival benefit from radiation, just the ability to limit local recurrence, not a small achievement but one that might not be worth the many side effects, sometimes lasting nearly two years, from EBRT. An getting one more opinion from a very experienced radiological oncologist at Hahneman this week; the other two opinions were from top gynecological oncologists at Jefferson and PA Hospital.

What I fear from even IMRT, which is supposed to minimize immediate side effects, are "late onset effects": the internet i full of testimonials about diahrrea that continues for nearly two years and worse, bone pain in hips or legs, a year after EBRT or even IMRT that make sleeping or even walking painful. My HUP radiologist admitted that nearly ten percent develop hip fractures a year to two later "but that we can treat many of them without surgery." If one is een LUCKY enough to survive for more than eight years, there's also greater risk of a scondary cancer developing by then from so much radiaiton.

I am sorry to bring up these misgivings since I know you're soon starting radiation, but did you research and have to make a hard decision? If I had an office job, the prospect of occasional diahrrhea for more than two months wouldn't be so sobering, but am a college teacher and need to be in a classroom twelve hours a week this fall.

A final question: are you having sandwich therapy (more chemo coming after radiation?.

If so, were you ever told that you had the option of concurrent chemo and radiation? (Just found out yesterday from a chance encounter with my chemo nurse that some who elect pelvic radiation take cisplatin at the same time because it maximizes the effectivenss of the radiation. Never was told this by my oncologist or radiologist!!!

But I also know cisplatin is a harsher drug than carboplatin so I would fear to follow that route. My radiologist also suggests that if I have just brachytherapy starting in three weeks, I could begin my last three rounds of chemo (taxol/carboplatin) at the same time. That would provide no extra pause after my first nine weeks of chemo, which worries me; doesn't the body need time to recover? What kinds of pauses are built into your own regimen, I wonder?

Realizing tht you asked merely for our diagnosis and place of treatment, realize I've gone overboard here, but it's my first post to any individual at this site, making me feel less alone in the challenge we all share.

I find great support and solace in books on nutrition and cancer; the more I read, the stronger I feel as it's one element in this challenge we DO have control over. The best I've read so far is Anti-Cancer by a psychiatrist and scientist who has twice overcome brain cancer via extensive research on nutrition and cancer and Natural Strategies for Cancer Patient by Dr. Russell Blaylock.

Best,

RoseyR

RoseyR
Posts: 462
Joined: Feb 2011

Dear Linda,

Was recently diagnosed with MMMT endometrial cancer, a very aggressive tumor but caught reasonably early (stage 1B) with clear lymph nodes and no signs of spread.

Had complete hysterectomy at HUP (Philadelphia) and recovered well from it.

Have just finished first three rounds of carboplatin/taxol (with surprisingly little distress!) but must now make hard decision on how MUCH radiation to pursue: just brachytherapy for 3 weeks, or full pelvic radiation (IMRT) for five weeks, five days a week, followed by brachy. Had three different opinions from top oncologists in Phila: Jefferson advised "just brachytherapy because your 18 lymph nodes are clear." Pa. Hospital said "Probably just brachytherapy; it is nearly as effective and has far fewer side effects--although you're healthy and reasonably young enough to withstand full pelvic radiation and just might want to consider it as a backup." My treating radiologist at HUP prescribed both, of course. But worry about cumulative damage to immune system. And for my kind of cancer, all studies show NO survival benefit from radiation, just the ability to limit local recurrence, not a small achievement but one that might not be worth the many side effects, sometimes lasting nearly two years, from EBRT. An getting one more opinion from a very experienced radiological oncologist at Hahneman this week; the other two opinions were from top gynecological oncologists at Jefferson and PA Hospital.

What I fear from even IMRT, which is supposed to minimize immediate side effects, are "late onset effects": the internet i full of testimonials about diahrrea that continues for nearly two years and worse, bone pain in hips or legs, a year after EBRT or even IMRT that make sleeping or even walking painful. My HUP radiologist admitted that nearly ten percent develop hip fractures a year to two later "but that we can treat many of them without surgery." If one is een LUCKY enough to survive for more than eight years, there's also greater risk of a scondary cancer developing by then from so much radiaiton.

I am sorry to bring up these misgivings since I know you're soon starting radiation, but did you research and have to make a hard decision? If I had an office job, the prospect of occasional diahrrhea for more than two months wouldn't be so sobering, but am a college teacher and need to be in a classroom twelve hours a week this fall.

A final question: are you having sandwich therapy (more chemo coming after radiation?.

If so, were you ever told that you had the option of concurrent chemo and radiation? (Just found out yesterday from a chance encounter with my chemo nurse that some who elect pelvic radiation take cisplatin at the same time because it maximizes the effectivenss of the radiation. Never was told this by my oncologist or radiologist!!!

But I also know cisplatin is a harsher drug than carboplatin so I would fear to follow that route. My radiologist also suggests that if I have just brachytherapy starting in three weeks, I could begin my last three rounds of chemo (taxol/carboplatin) at the same time. That would provide no extra pause after my first nine weeks of chemo, which worries me; doesn't the body need time to recover? What kinds of pauses are built into your own regimen, I wonder?

Realizing tht you asked merely for our diagnosis and place of treatment, realize I've gone overboard here, but it's my first post to any individual at this site, making me feel less alone in the challenge we all share.

I find great support and solace in books on nutrition and cancer; the more I read, the stronger I feel as it's one element in this challenge we DO have control over. The best I've read so far is Anti-Cancer by a psychiatrist and scientist who has twice overcome brain cancer via extensive research on nutrition and cancer and Natural Strategies for Cancer Patient by Dr. Russell Blaylock.

Best,

RoseyR

RoseyR
Posts: 462
Joined: Feb 2011

Dear Linda,

Was recently diagnosed with MMMT endometrial cancer, a very aggressive tumor, caught reasonably early (stage 1B) with clear lymph nodes and no signs of spread.

Had complete hysterectomy at HUP (Philadelphia) and am about to start radiation in three weeks but after three opinions from leading specialists in Philadelphia, still conflicted on how much I should have before last three rounds of taxol/carboplatin.

RoseyR

RoseyR
Posts: 462
Joined: Feb 2011

Dear Linda,

Was recently diagnosed with MMMT endometrial cancer, a very aggressive tumor, caught reasonably early (stage 1B) with clear lymph nodes and no signs of spread.

Had complete hysterectomy at HUP (Philadelphia) and am about to start radiation in three weeks but after three opinions from leading specialists in Philadelphia, still conflicted on how much I should have before last three rounds of taxol/carboplatin.

RoseyR

RoseyR
Posts: 462
Joined: Feb 2011

Dear Linda,

Was recently diagnosed with MMMT endometrial cancer, a very aggressive tumor, caught reasonably early (stage 1B) with clear lymph nodes and no signs of spread.

Had complete hysterectomy at HUP (Philadelphia) and am about to start radiation in three weeks but after three opinions from leading specialists in Philadelphia, still conflicted on how much I should have before last three rounds of taxol/carboplatin.

RoseyR

RoseyR
Posts: 462
Joined: Feb 2011

Dear Linda,

Was recently diagnosed with MMMT endometrial cancer, a very aggressive tumor, caught reasonably early (stage 1B) with clear lymph nodes and no signs of spread.

Had complete hysterectomy at HUP (Philadelphia) and am about to start radiation in three weeks but after three opinions from leading specialists in Philadelphia, still conflicted on how much I should have before last three rounds of taxol/carboplatin.

RoseyR

RoseyR
Posts: 462
Joined: Feb 2011

Dear Linda,

Was recently diagnosed with MMMT endometrial cancer, a very aggressive tumor, caught reasonably early (stage 1B) with clear lymph nodes and no signs of spread.

Had complete hysterectomy at HUP (Philadelphia) and am about to start radiation in three weeks but after three opinions from leading specialists in Philadelphia, still conflicted on how much I should have before last three rounds of taxol/carboplatin.

RoseyR

RoseyR
Posts: 462
Joined: Feb 2011

Dear Linda,

Was recently diagnosed with MMMT endometrial cancer, a very aggressive tumor, caught reasonably early (stage 1B) with clear lymph nodes and no signs of spread.

Had complete hysterectomy at HUP (Philadelphia) and am about to start radiation in three weeks but after three opinions from leading specialists in Philadelphia, still conflicted on how much I should have before last three rounds of taxol/carboplatin.

RoseyR

RoseyR
Posts: 462
Joined: Feb 2011

DEAR CSN MEMBERS,

Brand new to this site, I see with embarrassment that a few of my messages today have posted repetitively, four to five times.

How does this happen--and how can I avoid it?

Appreciatively,
Rosey R

lkchapman's picture
lkchapman
Posts: 103
Joined: Jan 2011

Hi Rosey,
Sometimes on especially long discussion threads it takes a really long time for your comment to post. Never press the post comment button more than once. You just have to be patient. It should eventually go through. :)

Laura

pixieetz
Posts: 1
Joined: Mar 2011

I am 62 and was diagnosed with Stage 3B endometrial cancer on Dec. 2, 2010. Had radical hystorectomy on NOv. 19, 2010. Have just finished 4 of my 6 chemo treatments...Paclitaxol and Carboplatin. CA125 markers going down. No radiation in my treatment plan. Begin treated at Siteman Cancer Ctr. St. Louis.

kfparke's picture
kfparke
Posts: 7
Joined: Jan 2011

Uterine tumor was detected and biopsied on November 18, 2010 during visit to OBY/GYN for slight vaginal bleeding episode. Da Vinci Robotic hysterectomy (tubes, uterus and ovaries removed) performed December 22,2010 with 35 lymph nodes removed and no involvement seen in lymph nodes and tumor had minimal invasion of the uterus. Staged at 1A and of course Grade 3 (MMMT -aggressive and unpreditable). Chemo (carbo/taxol) total of six treatments every 3 weeks prescribed and have completed 3 treatments thus far with minimal side effects. CA125 was taken AFTER first treatment so I don't know if this will be a good marker or not for me but will continue to ask for the test. Current CA125 is 15. No radiation in my treatment plan either.

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

I too was found to have MMMT. I found mine in March 2011, had surgery to remove uterus, ovaries, tubes, cervix, 10 lymph nodes, and the omentum. Tumor was 5.5x5x1.25cm in the uterus and they found 2 microscopic cells in 1 lymph node, which made it stage 3C1. I took the carbo/taxol for six treatments and no radiation.

I go for CT Scan 12 Sep and the results on 19 Sep to know if it has spread or is gone. CA125 before surgery was 15 after surgery jumped to 169 then has continually gone down during Chemo and now is at 22. I had the last chemo on 22 Aug so expect it to go down even more once I have the blood test.

How are you doing now? It was nice to find someone having the same as me in basically the same time period with same treatment.

Pat51
Posts: 103
Joined: Feb 2011

My name is Pat and I live in Wisconsin. I have been diagnosed with UPSC. I am happy to meet all of you. I personally have not met anyone else with UPSC.

After a couple days of slight spotting, I had a uterine biopsy done on Feb. 4, 2011. I was diagnosed with UPSC on Feb. 9,2011. I had a cervical biopsy done on Feb. 9, 2011 that came back negative. I had robotic assisted surgery done on Feb. 18, 2011. They removed my uterus, cervix, fallopian tubes,ovaries, appendix, omentum, 16-21 lymph nodes, had 6 peritoneal biopsies and had pelvic washings. The pathology confirmed the UPSC found on the uterine biopsy. The tumor was on the inner half of the uterine wall and was contained in the uterus. The lymph nodes were all negative, all peritoneal biopsies were negative, the pelvic washing was clear, the lymphovascular system was clear, nothing was found in the omentum. I was staged at 1B by the older staging and stage 1A by the more recent FIGO staging with a grade 2/3 tumor. I was told that UPSC usually presents itself in later stages so I was grateful for the lower stage, but it is still a very aggressive and scary disease. I started my chemo just short of three weeks after surgery, on March 10. Chemo is given once every three weeks. I am to take 6 rounds of carboplatin/taxotere and then radiation. However, I am not sure of what radiation therapy will consist of at this time. The radiologist does not see many cases of UPSC and is unsure of a recommendation and wants me to get more opinions.

Ro10's picture
Ro10
Posts: 1363
Joined: Jan 2009

Sorry you have to join our sisterhood, but glad your diagnosis was only 1A. I am glad you found this site. It has really good information, and positive information. Hope you are doing okay with your chemo. The unknown of how everything is going to go is very unsettling. I was diagnosed with UPSC III-C in 1/09. I too had the robotic surgery, and was surprised I too started chemo 3 weeks after the surgery. In 2/11 I started a repeat of the Taxol/Carbo for a recurrence. Because I knew what to expect the hair loss did not bother me this time. I know it grows back in time. Good luck with your radiation. I am glad you are getting opinions on what is best for you. Did you go to a GYN/Ono? They are more specialized in UPSC. Good luck to you.

Pat you may want to copy and paste your above post on a new discussion. This one is so long and others may not see it. The sisters on this site are very encouraging and willing to answer any question you may have. They also have a great set of ears when you just want to ventilate. In peace and caring.

iamawonder
Posts: 5
Joined: Mar 2011

Hello my name is Alta I am 53 with two children, I was diagnosed on Feb 18 with uterine cancer. I live in Northern Virginia with my fiancee and two adult children. This was very hard for me to deal with at first as I have been watching my mom who had cervical cancer and is in the last stages of her life as her cancer was diagnosed late and had traveled through out her body. I went through a hysterectomy on March 2 and am now 4 weeks recovery. Just spoke with the radiologist Oncologist and was told I will do internal radiation for 3 weeks one day a week. My cancer was caught early it was considered stage 2 as it did get into the cervix, but it was a grade 1 making it easy to treat. I will start the radiaiton in two weeks and will be done in no time. I then will have to go for check ups every 3 months for the first two years and then 6 months for the next two years until I can get to the 5 year mark. Good luck to everyone on this site

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

I am glad that you found us, although I am sorry for the reason. Good for you, though, that your cancer is considered easy to treat.

I assume that you are having vaginal brachytherapy, which I and many of the women here had too. I trust that you will find the treatment to be easy, painless, and quick.

We are a friendly, supportive group with a wealth of information; so if you have any questions, just ask.

All the best,

Jill

iamawonder
Posts: 5
Joined: Mar 2011

Hello Jill,

Thank you for the warm welcome. Since I was told I have been reading more and more just to know what is going to happen and what I need to know about preventive and pro active things needed in my life. I will be going through Vaginal Brachytherapy for a 3 week period with three treatments, one each week. The Oncology Radiolgist feels that this will be enough to ensure non to come back to the vaginal cuff. Until you get told you have cancer you have no idea how you will feel or how you will react. I have been lucky as they took 32 lymph nodes and found no cancer in them. There was only in the uteris and in the cervical connective tissue. There was none outside of the uteris itself. In speaking to all the Dr's and Nurses I have seen thus far they feel that this was caught early and is very treatable. I know that I am looking forward to the treatments to be all over with and to regain some sort of control again. I feel that this has taken all the control over in my life. At first this was the only thing I thought of when I woke in the morning and the last thing I thought of before I went to sleep. I know it will never be far from my mind but I also know I have to make a point of living the best I can with the wonderful man that stands there with me and the two adult kids I have. Again let me thank you for the welcome and I do plan on asking questions if I have any. I want to know as much of what is going to happen to me as well as what is going to be done to me.

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

I understand how focused you must be now on your diagnosis and treatment, and that is natural. I do not want to speak for anyone but myself, but initially my feeling was that I could never again have a "normal" life or one without that lurking fear. My diagnosis was three years ago; and I am here to say that I enjoy my life and don't think much about cancer. Please believe that all of this will get easier; right now you are immersed in the treatment stage. Once that is over, and you are assured once again that the cancer was very treatable, you can start regaining control over your life. It might take time, but we are here to support you through it.

This site allows you to search for information by going to the top right-hand corner of this page and clicking Search CSN Content. There is plenty of information on the Uterine Board about vaginal brachytherapy. I think you'll find this info very reassuring.

All the best,

Jill

iamawonder
Posts: 5
Joined: Mar 2011

Thank you so much for the responses. I do find that every day is a little easier. I am now just at 4 weeks post op and have two more weeks before radiation. I dont feel as nervous as I did just a week ago. I went to see the radiologist on Monday and after she told me what was to be done I felt much better and was able to relax more. I am looking forward to the time when all this will be in the back of my mind. I have been searching all over this site and reading a lot of these posts. Seeing others that have had similar experiences is so helpful. Making the decision for surgery and then radiation has gone very fast as I was diagnosed in Feb and am now just about ready for the end. I have been reading so much and anything I have not understood in reports from the Dr and the pathologist I have been looking up. I have so much information in my head right now it sometimes seems overwhelming. The Radiology Oncologist said I made her job easier since I had made myself so aware of things about my cancer and treatment options. I am just one that needs to know what is going to happen to me. The night before my surgery I was on the Dr website and watched a video of him doing the surgery, just to know what is going to happen. He is one of the best in our area and the top in his field for laproscopic surgery, and works out of 3 different hospitals doing surgery.

tinydancer22
Posts: 5
Joined: Mar 2011

Hi Linda, thanks for your post and what a helpful site this is. I had a complete hysterectomy 1/5/2011. The pathology report came back clear (nodes, tissue samples from all organs. This was a contained uterine cancer.) At the six week follow up my surgeon took a biopsy from the vaginal cuff as he said he saw some granulation. The biopsy came back metastatic adenocarcinoma grade 2-3. So the cancer recurred in a matter of weeks. Off to radiation. In the meantime I am doing alkaline water, barley greens etc. my ph is 8! which is excellent. My nutrional counselor says over and over again cancer cannot live in an alkaline body. I am very nervous about external beam radiation and 4 bracheytherapy tx's I have had two EBRT so far. I dread the side effects and went against my inner voice that kept telling me not to have the radiation. This is all way too scary and who knows whats really going on with all this technology. Thanks for listening. Serenity ps I am in west central florida.

iamawonder
Posts: 5
Joined: Mar 2011

Hello, I am just at 5 weeks recovery from a total hysterectomy. I had stage 2 grade 1. They found it had not gotten into the lymph nodes and was contained in the uteris. I am to start bracheytherapy three times for 3 weeks. I spoke with the radiation Oncologist and she said with the results from the biopsys and everything in all the reports that would be what is needed. I will then start the count down for the first 3 month check up.

Sorry to hear yours came back so soon. I think I am more afraid of Chemo than of radiation, I watched my mom go through both and she had more trouble with the Chemo.

Good luck with your treatments and hope everything comes out ok.

Alta

tinydancer22
Posts: 5
Joined: Mar 2011

Hi Linda...I posted info for Roll Call but it doesn't appear on the page. I wonder where it went....hope this gets out there....thanks for your post serenity

lawyerserv
Posts: 5
Joined: May 2011

Hi Everyone, I am new to this board. I was diagnosed with Grade 3, Stage 3c upsc in May 2011. I had a total laproscopic hysterectomy in mid May and began follow-up treatment: 3 chemo of carboplatin and taxol, followed by 5 weeks of external radiation, then 3 more chemos. I should finish sometime this fall. Bad news is my son is getting married September 17th, right at the end of this treatment. I am upbeat and hopeful in the face of this. Can any survivors out there give encouragement. I'm new and needy.

Arlene

mhilda
Posts: 12
Joined: Jun 2011

I am a newbie and I was diagnosed with the double whammy of Uterine cancer and Ovarian Cancer in May 2006. I had a complete Hysterectomy. I had 6 chemo treatments (Taxol and carboplatin. I then had 5 weeks of external radiation and 3 internal radiation. I started with 155 CA125 and by the third chemo treatment it was down to 10. It has stayed in the single digits since. Last CA125 was normal. In February of 2009, the radiologist found very small spots on my lungs. One grew and I had a PET scan in December 2009 and the spots were benign. Now in June 2011 my internist found a "mass" on my right lung. I had a CT scan and the results of that were that I needed to have a CT scan biopsy and a PET scan. I am due to have that on 20 June.

Mhilda

SASR
Posts: 1
Joined: Jul 2011

Sharon - Adenocarcinoma-Stage 1B, Radical Hyster 2007, Recurrence on vaginal cuff Now-July 2011,Planned treatment-external and brachy radiation
Houston, TX

lovemysaints's picture
lovemysaints
Posts: 15
Joined: Jul 2011

My name is Brook and I live in NY. I was diagnosed with Stage 1 two weeks ago. I meet with my oncologist for the first time this week so haven't gotten any details on the cancer (other than my research) or started any treatment yet. Definitely looking for a support group!

nicolegarza's picture
nicolegarza
Posts: 27
Joined: Mar 2011

Well my names is Nicole and I'm 28 and I was diagnosed last year at 27yrs old in June 28, 2010. I live the central valley in CA and I received surgery and treatment here as well.. I had a 26cm mass and had exploratory surgery June 28th, after 5 hrs in surgery I woke up to hear I have a 4lb tumor and received a total hysterectomy. I was crushed!!! I have no children and had no time to even think of harvesting any eggs... So my dream of being a mother is crushed!! Yes I know adoption is an option but with the that fact that I had cancer goes against me for one and also that its soooo expensive! Among so many other concerns! I HATE THIS STUPID DISEASE!!!!

So my official diagnosis was Adenocarcinoma Endometrioid Type, Stage 1A Ovarian/Uterine Cancer. I had surgery and 3 rounds of carbo/taxol.

I was only supposed to be in the hospital for 2-3 days and ended up there for 2 weeks!!! I was told a possible hysto but it was exploratory so I wasn't for sure... He(my Dr.) knew that the ovaries were affected but had no clue my uterus was filled with the same exact caner and it had not spread. It was the same type just in two separate places at once. He was in surgery and something told him to remove everything and he biopsied the uterus after and found it about 70% filled with cancer. I had several complications with my wound healing and had to have it reopened and had to have a wound vac put in!!! OMG SOO PAINFUL!!!! I ended up going home with a small wound vac and as my wound got smaller so did my wound vac sponge and machine did as well. I was almost completely healed wound wise when I started back to work and the same week started chemo... I did 1 week on 3 weeks off and chemo jacked me up! My body ached for 5 days after so bad I had to use a cane to walk. I was supposed to have 6 rounds of chemo total but after my 3rd I was sent to see a specialist at UCSF and she did a steady on my case and decided 3 vs 6 rounds there was no difference and I was officially cleared Sept 30 2010.

So I am doing well cancer wise... now my battle is of the mind and heart now oh and financially!!! There's so much more to my story but that's the short end of it...

I am very thankful to have found this site... haven't had a group to talk to... but a friend of mine and fellow cancer survivor just got a support group together and we had out first meeting last sat but again most of the women are older then me... but Its still good to talk to someone who knows what I'm going thru even if we have differenct types! I am thankful for all the support I can get!

Nicole

strongformom
Posts: 17
Joined: Jul 2011

Hello everyone,

I'm so relieved to find a good source of information and caring sisters-in-arms!

My name is Jennifer Hinton, and I live in Texas. My mother Barbara has been diagnosed with Stage 4B cancer and she lives in San Diego. She is 72. She had a successful hysterectomy about two weeks ago and is recovering from surgery. The doctors had to remove her omentum (tissue near the stomach) as well, and two lymph nodes. The doctor said although she is 4B her prognosis a bit better because the cancer has not been detected anywhere else.

All of her lymph nodes are negative for cancer and no other organs are showing signs of cancer. Her cancer "flew under the radar" for a long time because she had no vaginal bleeding and had CA125 reading was within normal level even pre-surgery.

She's been recommended to have chemo at the Ximed center/Scripps in SD which will last through December.

My mom is not strong enough to be on online yet, but I hope she will be soon.

Best wishes for all of you here,

Jennifer

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

Hi Jennifer,

I also live in San Diego. I finished treatment July 22, 2011, and I had it at my Dr. office at the Ximed Medical Center.

Your mom, or you can reach me, if you like at luisafayard@yahoo.com.
I would like to know who her doctor is.

Take care!

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

I had a D&C done in March found out April 1, 2011 that there was MMMT cancer cells. When to the GynOnc on April 4th had complete radical hysterectomy April 8th. Path report was 5x5x1.5cm tumor in uterus w/ 2 microscopic cells in 1 lymph node which made the MMMT a stage 3C1.
May 6th had 1st chemo treatment of carbo/taxel. I had six rounds of that every 21 days, I had the last one on Aug 22. I go back on 12 Sep for CT Scan/blood work then meet the Dr. on 19 Sep for results.

Main side effect was hair loss, some joint paid usually about days 4-9, taste changing and being tired. I prefer to just go bald and have gotten good at shaving my head.

I took 8 weeks off for the surgery and started back to work on 6 June. I took off when I got the chemo and when I started hurting.

I took Carbo/Taxel as I had asked the Dr what she would recommend knowing what stage I was and she said the Carbo/Taxel and no radiation. Hopefully in two weeks I will get the all clear. They are going to monitor me for the next 3 years but since they took out all the cancer cells, I am hopeful it is all gone and did not spread.
Trish

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

Hi every one, my name is Debra Phillips from Vidor, Trxas. I was diagnosed July 2009 with USPC at stage 1a. I had a radical hysterectomy Dec.3 2009 followed by five rounds of vaginal radiation and six rounds of Taxsol/Carboplatin. My C125 as of June 2011 was 14 and I have been seventeen months in remission. Thanks to all on the board and would love to hear from ya'll!

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

Hi every one, my name is Debra Phillips from Vidor, Trxas. I was diagnosed July 2009 with USPC at stage 1a. I had a radical hysterectomy Dec.3 2009 followed by five rounds of vaginal radiation and six rounds of Taxsol/Carboplatin. My C125 as of June 2011 was 14 and I have been seventeen months in remission. Thanks to all on the board and would love to hear from ya'll!

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

Hi every one, my name is Debra Phillips from Vidor, Trxas. I was diagnosed July 2009 with USPC at stage 1a. I had a radical hysterectomy Dec.3 2009 followed by five rounds of vaginal radiation and six rounds of Taxsol/Carboplatin. My C125 as of June 2011 was 14 and I have been seventeen months in remission. Thanks to all on the board and would love to hear from ya'll!

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

Hi every one, my name is Debra Phillips from Vidor, Trxas. I was diagnosed July 2009 with USPC at stage 1a. I had a radical hysterectomy Dec.3 2009 followed by five rounds of vaginal radiation and six rounds of Taxsol/Carboplatin. My C125 as of June 2011 was 14 and I have been seventeen months in remission. Thanks to all on the board and would love to hear from ya'll!

Hilajoan's picture
Hilajoan
Posts: 15
Joined: Nov 2011

I'm Joan, live in London.registered November last year after surgery/hysterectomy. MMMT /carcinosarcoma diagnosed. Had a hormone-sensitive breast cancer (mastectomy) few months earlier - unrelated! Just out of hospital now after lung Mets surgery -MMMT again. About to start the rounds of oncs. I am also on the UterineMMMT Yahoo group. I try to be as informed as possible - but gloomy about my prospects now as there seems no definitive treatment.

Ro10's picture
Ro10
Posts: 1363
Joined: Jan 2009

You have certainly been through a lot with MMMT and breast cancer. I hope the oncologists come up with a plan for you. I can certainly understand you being " gloomy". You will remain in my prayers. In peace and caring.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Are your doctors biopsying your tissue? A tissue assay will help determine which agents your cancer will respond best to. Since cancer tends to morph - it is good to get these assays done with each recurrence.

Just a thought. I also hope your treatment team comes up with an effective plan. Please don't lose hope.

Hugs, Mary Ann

Hannah1
Posts: 62
Joined: Jun 2012

My name is Hannah. I was dx with carcinosarcoma on 2004, had 2nd opinion and final
dx was uterine carcinoma, hysterectomy , chemo and interna and external radiation also
done. On 2008 , had stage 1 left breast cancer , lumpectomy done. On 2009 stage 1
thyroid cancer, thyroidectomy done. I was ok but now thyroid cancer had metastazed to
my lungs. Did lung biopsy. . I'm feeling ok , no symptoms. I will see my Endo Dr Tuesday
For further treatments. I'm staying positive all the way.

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

I was diagnosed with UPSC 1a just about a year ago. I'd had trouble sleeping and heavy bleeding/irregular periods all summer and just thought it was menopause.

Finally went to my GP in early September, asking for the hormone test to confirm menopause. She refused and sent me to my gyno. From there:

9/27/11 - transvaginal ultrasound: I've got a fibroid!

10/17 - scheduled for a D&C, which turned into a robotic hysterectomy (I had a septum in my uterus which kept the gyno from seeing the whole uterus...go figure)

10/20 - recovery was swift until I got the call from the gyno - can you come in and talk about your pathology results

11/7 - laparotomy/staging surgery; onc #1 says I don't need anything afterwards unless I 'want' to do 3 prophylactic rounds of chemo, onc #2 says I should be including radiation in my treatment. Confusion abounds. after much research and conversations with NIH, I fire onc #1

12/19 - after edema (retained 22 pounds of water) and a couple of incision infections, started chemo

1/3/12 - 2nd chemo

1/23 - 3rd chemo

February/March - external radiation

4/24 - 4th chemo

5/16 - 5th chemo

6/5 - 6th chemo

I now have about 3/4" of hair on my head and I have to shave my legs again. I still have occasional aches and pains, but those are dwindling and my abdominal swelling continues to subside.

I had a 2nd post-treatment CT last week exploring some lymph nodes, I have breast ultrasounds every 6 months because I've developed fibroadenomas, and my liver and magnesium levels are not what they should be.

Still, I feel great, sleep well, and walk the dogs frequently.

Liz in Dallas

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