Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatm
Comments
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Roll callzarkapopovic said:ROLL CALL
I live in Northern CA near Chico. I am being treated at the Palo Alto Medical Foundation in Mtn. View CA for endometrial adenocarcinoma stage IVB, grade I. Am trying to get into a clinical trial. I had surgery in November of 2010 and have not had any chemo or radiation yet due to an open wound that needed to close (it is closed).
There is another worldwide listserve that has been helpful to me that you may be interested in learning about called eyes on the prize. If you search the internet you will find them.
Hope to hear from everyone,
Zarka
I live in SE Pennsylvania between Philadelphia and Lancaster. Prior to my diagnosis I was a very healthy active 58 year old. (My history is multiple basil cell skin cancers in my 30's, fibroids and benign uterine polyps in my mid and late 40's and a history of high blood pressure, which was under control with medication.)
My uterine cancer was first diagnosed on December 14th, 2010 after just mild symptoms the previous week. I had surgery, total abdominal hysterectomy, bilateral salipingoophorectomy, omentectomy, pelvic lymph node dissection on December 29 at the Hospital at the University of Pennsylvania. I pushed for the quickest surgery possible due to the diagnosis of Uterine Papillary Serous Carcinoma. I spent New Years in Philly, something I always wanted to do!
I slept through the fireworks!!! I have found that HUP is an amazing place, and am very pleased so far with the team approach at the Jordan Center for Gynecological Cancer at Penn.
The cancer is stage 1 with a grade of 3. I will start chemo on Feb. 8, ( Carboplatin and Taxol) and start vaginal cylinder brachytherapy on Feb. 16.
I have noticed others with thyroid nodules on this website, I too was diagnosed with 3 of them during a pre-surgery PET scan and am now being followed by an endocrinologist as well. I was told they are too small to biopsy and to watch them for 6 months.
Jan0 -
My Diagnosis
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.0 -
My name is Laurakathijr said:My Diagnosis
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.
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.0 -
Roll Call
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.0 -
pelvic radiationfirstsister said:Hi all you wonderful ladies. I'm responding to linda's request for a roll call. I first joined cancer survivors network in Sept. 2009 because my brother has lumbar/sacral plexopathy, a long term result of radiation he had about 15 years ago for anal cancer. I was looking for help for him.
Now I have Stage 3-C UPSC diagnosed Sept. 2010 after complete hysterectomy. Have had three cycles of carboplatin/taxol and start 5 weeks of radiation probably next week followed by more chemo. So far so good. CA 125 at 14.8 down from 92.6 before chemo. Blood numbers good. Nervous about radiation and especially long term effects of it.
I'm 72 and live in central Florida.
What a comfort, source of information and inspiration you all are. Happy New Year and a better 2011.
Firstsister - Wanted to share my experience of pelvic radiation with you -
I had no skin problems from it - although that is a potential problem and can be managed with good skin creams. The biggest issue (aside from baring your butt to three technicians who were all younger than my kids I think!) was the GI reaction. You will want to have a prescription for Lomotil on hand and don't hesitate to use it. There was discomfort - sometimes burning after having a bowel movement - medicated tucks or some kind of medicated wipe is also good to have on hand as well as hydrocortisone or some cream you can use on your bottom. I never had nausea - it is really lower GI that is affected. And if you watch what you eat it helps - stay away from raw fruits and veggies with skin and seeds - and nuts - they will give you a list of foods that might aggravate your colon.
There is some fatigue with radiation - but when you are still really recovering from chemo it is not surprising. So you need to rest - I am not a napper, but I learned how important they are when you are in treatment.
I did have a couple of acupuncture treatments and I think they helped to some extent with the GI issues - and definitely with the fatigue.
And you have to be careful to stay hydrated since you can become dehydrated from the "over-activity" of your GI system. It helps to drink a lot. I learned that lesson the hard way.
The good news - and I know it is different for everyone - but I have not had the nightmare of long term effects I had worried about - a couple of people told me their war stories about this - my docs said that things had changed in how they do the radiation field in the last few years and how they have learned to protect your colon as best they can. So while my colon is still what I call "funky", I do not have daily problems - I have flare-ups - they might last a few days - but they are not debilitating, and I have learned to live with this new system I have. I have been told it will get better as the colon heals - but even if it stays this way, I can deal - I keep lots of reading material and crossword puzzles in the bathroom - just in case.
I hope you have a relatively smooth go of it. None of this is easy - but having a sisterhood of caring people who have gained wisdom along the way, for me, helps me think I can do this if I have to.
Good luck0 -
Could we join our pre history for joint data?
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.0 -
Hang in therelkchapman said:My name is Laura
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.
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..0 -
Kind of uterine cancer and where I'm being treated
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,
RoseyR0 -
Kind of uterine cancer and where I'm being treated
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,
RoseyR0 -
Kind of uterine cancer and where I'm being treated
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,
RoseyR0 -
Kind of uterine cancer and where I'm being treated
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,
RoseyR0 -
Kind of uterine cancer and where I'm being treated
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,
RoseyR0 -
Kind of uterine cancer and where I'm being treated
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,
RoseyR0 -
Kind of uterine cancer and where I'm being treated
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,
RoseyR0 -
Kind of uterine cancer and where I'm being treated
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.
RoseyR0 -
Kind of uterine cancer and where I'm being treated
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.
RoseyR0 -
Kind of uterine cancer and where I'm being treated
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.
RoseyR0 -
Kind of uterine cancer and where I'm being treated
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.
RoseyR0 -
Kind of uterine cancer and where I'm being treated
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.
RoseyR0 -
Kind of uterine cancer and where I'm being treated
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.
RoseyR0
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