stage IV uterine cancer
Comments
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Hi, Scarlet:
Next month I will be an eight-year survivor of uterine (endometrial) cancer. My initial reaction, based on the information you've provided, is that you don't yet have enough information to conclude that your mother has Stage 4B uterine cancer. Therefore, as difficult as it might be, I would try to wait until the rest of her test results come in and she has the second opinion with the gyn-onc at Dana Farber.
I was wondering how they knew it was adenocarcinoma when the endobiopsy was negative. Was endometrial adenocarcinoma confirmed by a D&C after the negative endobiopsy? Did the doctor also do a vaginal biopsy and do you have pathological confirmation that it is in fact endometrial adenocarcinoma that has spread to the vagina?
You know, Scarlet, I've been tested more times than I can count over the past eight years. I have become somewhat of a cynic about putting too much faith in diagnostic tests if they have not been confirmed by biopsies. Before you presume that you are dealing with a stage IVB uterine cancer, I would want to wait for the rest of the test results to complete the diagnostic picture.
Keep in mind that even if your worst fears are confirmed, there are long-term survivors of advanced uterine cancer. Someone has to be in that category, and it may as well be your mother, because with such a nice daughter, she has so much to live for!
Please let us know how the rest of your mother's testing goes, and best of luck to you and your mom.
MoeKay0 -
Hi MoeKay,MoeKay said:Hi, Scarlet:
Next month I will be an eight-year survivor of uterine (endometrial) cancer. My initial reaction, based on the information you've provided, is that you don't yet have enough information to conclude that your mother has Stage 4B uterine cancer. Therefore, as difficult as it might be, I would try to wait until the rest of her test results come in and she has the second opinion with the gyn-onc at Dana Farber.
I was wondering how they knew it was adenocarcinoma when the endobiopsy was negative. Was endometrial adenocarcinoma confirmed by a D&C after the negative endobiopsy? Did the doctor also do a vaginal biopsy and do you have pathological confirmation that it is in fact endometrial adenocarcinoma that has spread to the vagina?
You know, Scarlet, I've been tested more times than I can count over the past eight years. I have become somewhat of a cynic about putting too much faith in diagnostic tests if they have not been confirmed by biopsies. Before you presume that you are dealing with a stage IVB uterine cancer, I would want to wait for the rest of the test results to complete the diagnostic picture.
Keep in mind that even if your worst fears are confirmed, there are long-term survivors of advanced uterine cancer. Someone has to be in that category, and it may as well be your mother, because with such a nice daughter, she has so much to live for!
Please let us know how the rest of your mother's testing goes, and best of luck to you and your mom.
MoeKay
Thank you for replying and congratulations on 8 yrs! Can you tell me more about your cancer?
My mom was bleeding vaginally in Oct. Told her Dr at her physical. Had pap and mammo, normal.
Then in oct had an endo biopsy that showed neg, a pelvic mri and intravaginal ultrasound were also done in oct. all showed 'normal'. When she went to the ER on Feb 20th with very bad pelvic/hip pain, they told her she had sciatica. Went back 5 days later, did xray and saw a mass on the pelvic bone. Then did catscan and saw nodules and lesions on the lungs "characteristic" of metasticized cancer.They know it was adenocarcinoma when they biopsied the mass in the pelvic bone. They gave us "preliminary" biospy results and told us they were unsure of primary, but it "could" be uterine and it was in advanced stages. They discharged her, (she was in Florida for the winter, and they told us to go home to Boston). Two days later they called us and told us it was stage IV uterine and to get to Boston asap. Last thurs, the 2nd opinion dr in Boston did an endometrial biopsy and also saw a black spot on vagina, so biopsied that. She told us "atypical" cells appeared un uterus, but carcinoma showed on vagina biopsy and still called it stage IV uterine cancer. The doctor ordered a PETscan to see if the nodules on lungs light up and to also see if/where the cancer has spread. My mom had collapsed lung in the late 80's. Florida did not want to do biopsy of lungs because if her lung collapsed, she couldn't fly for 6 wks. The dr last wk preferred a PETscan over biopsy as it is less invasive to the lungs for fear of collapse.Today was her PET scan, and tomorrow is our 3rd opinion at Dana Farber. We will find out PETscan results tomorrow, and hopefully more information from this dr.
We are confused as to how they are saying it is uterine cancer, when there has not been any cancer found in uterus still. There has not been a d &c at any time either. We will hope for more information to understand all of this over the next few days.
I hope that helps you to understand more of this? I agree with you and think we need more information. Will see what they say tomorrow. Thank you for your email and your support. Please write more about your cancer if you can. Enjoy the wkend, Scarlet250 -
Hi Scarlet,
I've just read your message(s), and MoeKay's reply to the first. I hope you are getting clarification of why the docs are so convinced of the stage IV dx. I hope you are helping your mom prepare written questions to take to appointments. It's always best to write them down and check them off as they're answered-don't leave until you write down those answers, too. It's way too easy to forget, and for the docs to blow over your concerns.
Please let us know what's happening now. We all can benefit from each other's experiences.0 -
Thank you for your replies to my email. It was confirmed last Friday that my mom has uterine cancer. It has metastacized to her vagina, pelvic bone, tail bone and lungs. There are lots of tumors on her lungs, the largest being 2cm. It is a grade 1 well differentiated cancer. We asked many questions. She had a biopsy of the pelvic bone, endometrium and vagina. She also had a PETscan in which all that showed up and the lungs also lit up. She started chemo this Monday. Carboplatin and Taxol. She will have 2 cycles, the 2nd on April 10th. The dr also talked about megace. She is currently treating another woman, w/ uterine cancer, and mets to lungs and she is responding to the chemo and the tumors are shrinking. That was positive for us to hear. She is being treated at Dana Farber. This is our 3rd opinion. We love Dana Farber. She will see the integrative doctor tomorrow who is also an oncologist. He will share his knowledge of acupuncture, massage, herbs, guided imagery etc., all which can be done at Dana Farber. My mom hates medication and is looking forward to meeting this doctor also. He works in conjuntion w/ her gyn oncologist.groundeffect said:Hi Scarlet,
I've just read your message(s), and MoeKay's reply to the first. I hope you are getting clarification of why the docs are so convinced of the stage IV dx. I hope you are helping your mom prepare written questions to take to appointments. It's always best to write them down and check them off as they're answered-don't leave until you write down those answers, too. It's way too easy to forget, and for the docs to blow over your concerns.
Please let us know what's happening now. We all can benefit from each other's experiences.
My mom was doing great until today. She stops the zoffran (anti nausea) today, and this evening started feeling dizzy. Her stomache hurt her all day today. And her appetite is starting to decrease. But her pelvic and tailbone pain is gone for the past 2 days. She has only been taking motrin, as all the narcotics for pain are making her super sick. The doctor cannot believe that she is not in more excruciating pain, as the pelvic mass is quite large...corroded most of the bone. They will try methadone, should her bone/nerve pain return.
If any of you know of anything that can help w/ the stomache, nausea effects of the carbo/taxol, please let us know. Her lymphnodes are clear and her other organs are also clear. She weighs 197 (had not lost any weight prior to this, ) so that is also in her favor. Please pray and think positive thoughts for her. Thank you for this site, it helps to not feel alone.0 -
Dear Scarlett,
God bless you and your mother...you have been through enough! As far as the nausea, they can give Ativan with her chemo which will also relax her. Then she might feel like eating.
Have you tried smoothies or just lots of ice cream? My mother (lung cancer) loved the Italian Ice or sorbets. My sister (breast cancer) loved the slushies from Sonic. Me...endometrial cancer...but no chemo...I ate lots of ice cream during radiation. Anything that doesn't require a lot of fuss but has lots of calories is great.
Have you asked the doctors about the marijuana pill? It helps both the anxiety and appetite and she simply swallows it. My mother used it and it worked for her appetite...we just went crazy trying to find whatever she might be craving at the moment!!!
My mother passed almost 14 years ago, but my sister is a 7 year survivor and I am almost 2 years out. There are miracles everday...your mother might as well be one!
Lots of love and prayers to you all!
Tammy0 -
I just want to let you know that my mom (72) was diagnosed with stage 4 uterine cancer in January. She was having a lot of pain in her legs and pelvic area, along with bleeding. The doctors didn't give her much hope. It had spread through her lymph nodes and there were multiple spots on her lungs. She went through 3 rounds of chemo and was able to have the surgery. The pathology report came back showing no cancer, and the cat scan no longer showed the cancer. I know that it wasn't just the doctor, but God definitely had his hands in it. There were many prayers that went up acros the country for her. The power of prayer is very strong and I highly recommend it. I really hope that you and your family keep your spirits high. There's always hope. And remember...the prayer of the faith will heal the sick.0
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Dear Livingwfaith,livingwfaith said:I just want to let you know that my mom (72) was diagnosed with stage 4 uterine cancer in January. She was having a lot of pain in her legs and pelvic area, along with bleeding. The doctors didn't give her much hope. It had spread through her lymph nodes and there were multiple spots on her lungs. She went through 3 rounds of chemo and was able to have the surgery. The pathology report came back showing no cancer, and the cat scan no longer showed the cancer. I know that it wasn't just the doctor, but God definitely had his hands in it. There were many prayers that went up acros the country for her. The power of prayer is very strong and I highly recommend it. I really hope that you and your family keep your spirits high. There's always hope. And remember...the prayer of the faith will heal the sick.
Thank you for your post. It is so nice to read such a positive story. I'm very happy for your mom and your family. It gives us much hope and I will read your post to my mom. She had a chest xray on Friday and there are only a few, very tiny nodules remaining visible. We were so happy to hear that they are disapppearing. Like your mom, my mom had multiple nodules, the largest measuring 2.5cm. We meet with the oncologist tomorrow to see what the next step will be. My mom had 2 cycles of chemo and 10 treatments of radiation to the pelvic bone and pelvic area. She is feeling okay, but very tired, otherwise, she is doing well. We are staying positive and have much hope and your mom's story gives us even more hope. Thank you for sharing your story with us.0 -
Hi Everyone,scarlet25 said:Thank you for your replies to my email. It was confirmed last Friday that my mom has uterine cancer. It has metastacized to her vagina, pelvic bone, tail bone and lungs. There are lots of tumors on her lungs, the largest being 2cm. It is a grade 1 well differentiated cancer. We asked many questions. She had a biopsy of the pelvic bone, endometrium and vagina. She also had a PETscan in which all that showed up and the lungs also lit up. She started chemo this Monday. Carboplatin and Taxol. She will have 2 cycles, the 2nd on April 10th. The dr also talked about megace. She is currently treating another woman, w/ uterine cancer, and mets to lungs and she is responding to the chemo and the tumors are shrinking. That was positive for us to hear. She is being treated at Dana Farber. This is our 3rd opinion. We love Dana Farber. She will see the integrative doctor tomorrow who is also an oncologist. He will share his knowledge of acupuncture, massage, herbs, guided imagery etc., all which can be done at Dana Farber. My mom hates medication and is looking forward to meeting this doctor also. He works in conjuntion w/ her gyn oncologist.
My mom was doing great until today. She stops the zoffran (anti nausea) today, and this evening started feeling dizzy. Her stomache hurt her all day today. And her appetite is starting to decrease. But her pelvic and tailbone pain is gone for the past 2 days. She has only been taking motrin, as all the narcotics for pain are making her super sick. The doctor cannot believe that she is not in more excruciating pain, as the pelvic mass is quite large...corroded most of the bone. They will try methadone, should her bone/nerve pain return.
If any of you know of anything that can help w/ the stomache, nausea effects of the carbo/taxol, please let us know. Her lymphnodes are clear and her other organs are also clear. She weighs 197 (had not lost any weight prior to this, ) so that is also in her favor. Please pray and think positive thoughts for her. Thank you for this site, it helps to not feel alone.
First Scarlet, I want to say sorry about all your moms going through and hope she will be ok, but,
I have to say, i am totally confused and a bit scared, from reading your post....maybe im missing something....you said, all the tests, and biopsies, and d&c? showed no cancer? then how do you know she has uterine cancer? maybe i didnt read it right.....also, you said they found a nodule in her lung? i thought nodules in the lung were benign? Reason, im saying this, i had a pet/ct scan just this May, and it didnt change from the same spot nodule they saw back in Nov, if it doesnt change in size, normally that means its benign...most, maybe not all, lung nodules are suppose to be benign...now you have gotten me scared, wondering...if my nodule in my lung, is a metastizes, from either my breast cancer or rectal/anal cancer.....or from this bleeding i have been having since Nov....im a breast cancer survivor and anal cancer survivor....when they radiated my anal....they radiate the outside of the pelvic...they said, id probably go into menopause, and for 1yr and 8 mths didnt have a period....but then this Nov 2006, i started noticing, stop lite pink, to red bleeding, and been that way ever since, on and off, not everyday, and not heavy bleeding, but, the gynos, cant get a biopsy of my uterus, because the rads changed the pelvic organs......they told me i had a nodule on my leg lung, i was shocked, but the pet scan place, said, comparing it to a nodule in nov, for the same lung, same spot, it never changed in size....it was a 3mm...my oncologist said, its so small no surgeon would think to even biopsy it....after reading your post, you have me wondering...what this is now...or are you sure your mothers nodule is benign or malignant? is it a nodule or a lesion? terminology makes a big difference....im sorry but your post was a bit confusing to me....you also spoke of vaginal paps or biopsies and then said something about its results, for uterine cancer? vaginal paps or biopsies, have nothing to do with the uterus.
I hope you can clarify for me, some of the things i asked in my reply to you, im very concerned.0 -
Dear NeverLoseHope2,NeverLoseHope2 said:Hi Everyone,
First Scarlet, I want to say sorry about all your moms going through and hope she will be ok, but,
I have to say, i am totally confused and a bit scared, from reading your post....maybe im missing something....you said, all the tests, and biopsies, and d&c? showed no cancer? then how do you know she has uterine cancer? maybe i didnt read it right.....also, you said they found a nodule in her lung? i thought nodules in the lung were benign? Reason, im saying this, i had a pet/ct scan just this May, and it didnt change from the same spot nodule they saw back in Nov, if it doesnt change in size, normally that means its benign...most, maybe not all, lung nodules are suppose to be benign...now you have gotten me scared, wondering...if my nodule in my lung, is a metastizes, from either my breast cancer or rectal/anal cancer.....or from this bleeding i have been having since Nov....im a breast cancer survivor and anal cancer survivor....when they radiated my anal....they radiate the outside of the pelvic...they said, id probably go into menopause, and for 1yr and 8 mths didnt have a period....but then this Nov 2006, i started noticing, stop lite pink, to red bleeding, and been that way ever since, on and off, not everyday, and not heavy bleeding, but, the gynos, cant get a biopsy of my uterus, because the rads changed the pelvic organs......they told me i had a nodule on my leg lung, i was shocked, but the pet scan place, said, comparing it to a nodule in nov, for the same lung, same spot, it never changed in size....it was a 3mm...my oncologist said, its so small no surgeon would think to even biopsy it....after reading your post, you have me wondering...what this is now...or are you sure your mothers nodule is benign or malignant? is it a nodule or a lesion? terminology makes a big difference....im sorry but your post was a bit confusing to me....you also spoke of vaginal paps or biopsies and then said something about its results, for uterine cancer? vaginal paps or biopsies, have nothing to do with the uterus.
I hope you can clarify for me, some of the things i asked in my reply to you, im very concerned.
I apologize if my explanation was unclear. My mom had the following tests in Nov 06 because she was experiencing vaginal bleeding: intravaginal ultrasound, endometrial biopsy, pelvic MRI, a fibroid biopsied and a polyp removed. (I'm not sure where you read vaginal paps, she did have a pap smear during her routine physical but that does not typically show uterine cancer). ALL these testes were NEGATIVE. She continued to bleed off and on from Dec -Feb. Called her gyn, but the gyn said the bleeding was from the polyp she removed in Nov. In Feb, she had hip/pelvic pain and went to the ER. They told her it was sciatica, but the pain got worse so she went back 5 days later. She had an xray of the pelvic area in which a mass showed up on the pelvic bone. They admitted her and did catscans and a chest xray. The chest xray showed multiple nodules on the lungs. They did not biopsy the lung nodules at the time, and were not 100% certain they were metastases, but DID biopsy the pelvic bone mass. That showed adenocarcinoma. They did a PETscan, which showed the lung nodules were indeed cancer. She has tumors in the uterus, vagina, pelvic bone and tailbone. She has well-differentiated, grade 1 adenocarcinoma, the uterus is the primary site. Because it is in all of those places, it is stage IV. We have since learned that the gyn should have done a D&C back in Nov to determine the cause of bleeding. Although all of the other tests were negative, the bleeding continued. So the next step should have been a D&C and/or further testing until cause of vaginal bleeding was found. My mom had 2 cycles of chemo, which did shrink the lung nodules a little. It didn't seem to help the vaginal bleeding or pelvic bone pain, as those tumors are larger. (The largest lung nodule was 2.5 cm and slightly smaller, 2.1 after chemo). So they did 10 radiation treatments to the pelvic bone and pelvic area. This seemed to help the pain and stopped the bleeding, but her intestines became very inflamed and she was hospitalized for 6 days because she lost bowel control. She also started taking megace, a hormone that can help estrogen receptive tumors. She is not undergoing radiation or chemo right now, only taking the megace. They want her intestines to heal and for her to gain some strength. We will find out this week what the next treatment plan will be. They were talking about a hysterectomy and then chemo and megace to control the lung nodules and the cancer from spreading but we are not certain that is still the plan. She is amazingly strong and not taking any major pain med. She only takes neurontin, for nerve pain (the pelvic bone pain), and at night it helps her to sleep. Otherwise, she takes extra strength tylenol for the pelvic bone pain and then the megace for the tumors. She is allergic to morphine and other narcotic pain meds.
She has been through so much and really is such an amazing woman. We are not sure what will happen, but we all have much hope and we pray that each day the tumors will shrink and she will gain strength to fight this disease.
I don't know how to advise you on your situation or how to answer your questions, but I hope this explaination clarifies any of your concerns.
Scarlet0 -
Hi, I was just wondering how your mom is doing, you had said she went into remission? My mom currently has stage 3c uterine cancer, the pathology came back last week from the hysterectomy saying it was confined to the uterus, of the 17 lymph nodes they took, one was positive.. The part that worries me is that a ct scan found 6 bi-lateral lung nodules smaller than 7mm. They dont know what those are at this time.. they will treat her w/chemo and after 3 scan her to see if they go away.. We are hoping they do not as that will make her a stage IV. The radiologist wrote on the report suspicious of metastic disease. I find it odd, but I know its possible that only 1 node was involved and it was only in the uterus and would just go to the lungs? Are there any longterm survivors out there treated with taxol/carboplatin or someone who has had a long remission? thanks.livingwfaith said:I just want to let you know that my mom (72) was diagnosed with stage 4 uterine cancer in January. She was having a lot of pain in her legs and pelvic area, along with bleeding. The doctors didn't give her much hope. It had spread through her lymph nodes and there were multiple spots on her lungs. She went through 3 rounds of chemo and was able to have the surgery. The pathology report came back showing no cancer, and the cat scan no longer showed the cancer. I know that it wasn't just the doctor, but God definitely had his hands in it. There were many prayers that went up acros the country for her. The power of prayer is very strong and I highly recommend it. I really hope that you and your family keep your spirits high. There's always hope. And remember...the prayer of the faith will heal the sick.
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Dear Danryan01,danryan01 said:Hi, I was just wondering how your mom is doing, you had said she went into remission? My mom currently has stage 3c uterine cancer, the pathology came back last week from the hysterectomy saying it was confined to the uterus, of the 17 lymph nodes they took, one was positive.. The part that worries me is that a ct scan found 6 bi-lateral lung nodules smaller than 7mm. They dont know what those are at this time.. they will treat her w/chemo and after 3 scan her to see if they go away.. We are hoping they do not as that will make her a stage IV. The radiologist wrote on the report suspicious of metastic disease. I find it odd, but I know its possible that only 1 node was involved and it was only in the uterus and would just go to the lungs? Are there any longterm survivors out there treated with taxol/carboplatin or someone who has had a long remission? thanks.
I just sent a private reply to your post. Thank you for asking about my mother. She is not in a full remission, as that would mean there is no trace of cancer showing up on her scans. But, her October scans show that the nodules on her lungs have decreased by about 50% since her scans in March, and there are no new mets. This is the closest thing to a remission. We are so pleased and grateful with these results. She feels good, and can do many of the things she did before her cancer diagnosis but she tires very easily. This is difficult for her as she is very independent and because she is limited it brings frustration.
The carbo/taxol chemo didn't help my mom, but she is on a hormone called megace. This appears to be working quite well right now and is decreasing the cancer and keeping it from spreading. Please keep me posted on your mom's treatment and progress. Ask the doctors about megace. My mom took that while doing her 2 chemo treatments. The side effect is weight gain. My mom sees a nutritionist, and is not gaining any weight, which is good. My mom has a highly estrogen receptive adenocarcinoma of the uterus, grade 1. My mom has a very positive attitude and we beleive this is also helping her.
I will keep you and your mom in my prayers. Please do not give up hope.0 -
stage 4 Uterine Cancerscarlet25 said:Hi MoeKay,
Thank you for replying and congratulations on 8 yrs! Can you tell me more about your cancer?
My mom was bleeding vaginally in Oct. Told her Dr at her physical. Had pap and mammo, normal.
Then in oct had an endo biopsy that showed neg, a pelvic mri and intravaginal ultrasound were also done in oct. all showed 'normal'. When she went to the ER on Feb 20th with very bad pelvic/hip pain, they told her she had sciatica. Went back 5 days later, did xray and saw a mass on the pelvic bone. Then did catscan and saw nodules and lesions on the lungs "characteristic" of metasticized cancer.They know it was adenocarcinoma when they biopsied the mass in the pelvic bone. They gave us "preliminary" biospy results and told us they were unsure of primary, but it "could" be uterine and it was in advanced stages. They discharged her, (she was in Florida for the winter, and they told us to go home to Boston). Two days later they called us and told us it was stage IV uterine and to get to Boston asap. Last thurs, the 2nd opinion dr in Boston did an endometrial biopsy and also saw a black spot on vagina, so biopsied that. She told us "atypical" cells appeared un uterus, but carcinoma showed on vagina biopsy and still called it stage IV uterine cancer. The doctor ordered a PETscan to see if the nodules on lungs light up and to also see if/where the cancer has spread. My mom had collapsed lung in the late 80's. Florida did not want to do biopsy of lungs because if her lung collapsed, she couldn't fly for 6 wks. The dr last wk preferred a PETscan over biopsy as it is less invasive to the lungs for fear of collapse.Today was her PET scan, and tomorrow is our 3rd opinion at Dana Farber. We will find out PETscan results tomorrow, and hopefully more information from this dr.
We are confused as to how they are saying it is uterine cancer, when there has not been any cancer found in uterus still. There has not been a d &c at any time either. We will hope for more information to understand all of this over the next few days.
I hope that helps you to understand more of this? I agree with you and think we need more information. Will see what they say tomorrow. Thank you for your email and your support. Please write more about your cancer if you can. Enjoy the wkend, Scarlet25
Hi scarlet25,
My wife is very new member of this site, she diagnosed stage 4 grade 3 Endometroid adenocarcinoma ( Uterine Cancer).I like to hear form you, how did you handle your Mom's situation.. what kind of chemo regiments she used?, did it work, how about the lung tumor?
My wife's regiment was Taxol/Carboplatin.. 3 times she took and 15 times..( 5 times/week Radiotherapy) for the pelvic and vaginal tumor....
tumor got smaller but not enough... and doctors are loosing faith in her and dropping her becasue after 3 time of Chemo, she did not see any benefit of it... And recenly at CT scan,,, they saw small dots of tumor on both lungs ... so this is an aggresive cell... BUT what else can be done? other chemo regiments?.. or side drugs that I read on this site with Chemo that works on tumors/....................any ideas and advice for me?
please respond,
thank you,0 -
stage IV uterine cancerscarlet25 said:Dear Danryan01,
I just sent a private reply to your post. Thank you for asking about my mother. She is not in a full remission, as that would mean there is no trace of cancer showing up on her scans. But, her October scans show that the nodules on her lungs have decreased by about 50% since her scans in March, and there are no new mets. This is the closest thing to a remission. We are so pleased and grateful with these results. She feels good, and can do many of the things she did before her cancer diagnosis but she tires very easily. This is difficult for her as she is very independent and because she is limited it brings frustration.
The carbo/taxol chemo didn't help my mom, but she is on a hormone called megace. This appears to be working quite well right now and is decreasing the cancer and keeping it from spreading. Please keep me posted on your mom's treatment and progress. Ask the doctors about megace. My mom took that while doing her 2 chemo treatments. The side effect is weight gain. My mom sees a nutritionist, and is not gaining any weight, which is good. My mom has a highly estrogen receptive adenocarcinoma of the uterus, grade 1. My mom has a very positive attitude and we beleive this is also helping her.
I will keep you and your mom in my prayers. Please do not give up hope.
Hi Scarlet,
I have been reading your mom's history.I hope she is doing better than before, and treatment is helping her.
I was very much following your posting because my wife may have the same disease..
stage IV, grade III.took 3 chemo treatments of Taxol/carbo did not help .. she took 15 times radiation (3000) units.. and pelvic tumors did not shrink enough..........mets to her lungs recently which was not there before..it was seen on CT scan but not PET scan done...
At this point her drs.. gyno/onco and radiation dr. are transferring her to a University hospital... I hope they give her something else that helps?
However her doctors did not give anything else but taxo;/Carbo.doc. said this is the best we have... that was all.
what do you think thru your experience.. an advice?
Ohh, she had endometrial adenocarcinoma.. (uterus)
can you believe it she was first diagnosed stageI,,, when she had a cyst removal.. when the doctor did D&C.. pathology repoert came back as stage I.. endometroid adenocarcinoma.. . she was scared of cancer stage I.. she wanted to have a complete hysterecomy.. that is when they found out that this was not stage I, but stage 4.. grade III.
How much you can believe the test, pathologist or the doctors??
Any commetns from you will be appreciated.
thank you,0 -
My momArarat said:stage IV uterine cancer
Hi Scarlet,
I have been reading your mom's history.I hope she is doing better than before, and treatment is helping her.
I was very much following your posting because my wife may have the same disease..
stage IV, grade III.took 3 chemo treatments of Taxol/carbo did not help .. she took 15 times radiation (3000) units.. and pelvic tumors did not shrink enough..........mets to her lungs recently which was not there before..it was seen on CT scan but not PET scan done...
At this point her drs.. gyno/onco and radiation dr. are transferring her to a University hospital... I hope they give her something else that helps?
However her doctors did not give anything else but taxo;/Carbo.doc. said this is the best we have... that was all.
what do you think thru your experience.. an advice?
Ohh, she had endometrial adenocarcinoma.. (uterus)
can you believe it she was first diagnosed stageI,,, when she had a cyst removal.. when the doctor did D&C.. pathology repoert came back as stage I.. endometroid adenocarcinoma.. . she was scared of cancer stage I.. she wanted to have a complete hysterecomy.. that is when they found out that this was not stage I, but stage 4.. grade III.
How much you can believe the test, pathologist or the doctors??
Any commetns from you will be appreciated.
thank you,
Dear Ararat,
I am sorry to read about your wife and all that she has been suffering through. My thoughts and prayers are with you, your wife, and your family. This disease affects the entire family and it is so difficult to watch our loved ones have to go through the pain, fear and suffering. Please try to stay positive and have hope.
I have not been on the website for months so I apologize for just replying to your post.
My mom was diagnosed in Feb 2007, 19 months ago. Since April of 2007, her cancer has been shrinking and is now considered "stable". In Feb/March 2007, she was given 2 rounds of chemo,(taxol and carboplatin). That did not shrink the mets to her lungs much at all, so they stopped that treatment.
In April 2007, she started taking a hormonal treatment called Megace, (a pill she takes 4xs daily, I think each pill is 40 mg)
My mom has endometrial adenocarcinoma, grade 1, stage 4, with mets to pelvic bone,tail bone, one pelvic lymph node and lungs. Her cancer is estrogen receptive, that is why they prescribed the Megace. In March, 2007, she also started to take this herbal tea called Essiac and Cat's Claw tea. She drinks 12-16 oz daily. In March 2007, she also started to drink alkaline water. She drinks a brand called Evamor. It is the only type of water she drinks. It helps to keep the pH balanced in her body.
She has cut out some white sugar and white flour from her diet, but overall, she hasn't changed too much within her diet. She also takes Vit D, Fish Oil, pure Pomegranite juice (syrup), acidopholous, glutamine, l-carnitine, a multi-vitamin, calcium/magnesium, and spirulina. The tea, water and supplements have all been recommended OR approved of by her oncologist. She was also given 10 rounds of radiation to her uterus and pelvic bone area last May-June, 2007. The radiation burned her intestines and she was hospitalized for 10 days. They had to stop the treatments. The radiation DID stop her vaginal bleeding and also stopped the pelvic bone pain. (She was having pelvic bone pain, and occasional vaginal bleeding at the time of diagnosis. I explained all of that in my first post, but will answer any questions you may have regarding that in the next post.)
My mom had a PET scan when first diagnosed and since has had a CT scan of Chest, Abdomen and Pelvis every 8 weeks, and since Dec 2007 every 3-4 months. She just had her 3-month scans last week, and the cancer has decreased in size so much that the nodules on her lungs are not showing up on her lungs. The cancer has not metastasized and has been shrinking in size with each scan. When first diagnosed, the Dr. felt my mom could not go into full remission because it has spread so much but she could try to shrink the cancer and keep it stable. Her cancer has been shrinking and is currently considered "stable". The doctor told us it is "like she is in remission". This was the best news we could have received. She will go back in Dec for her next set of 3 month scans. We continue to pray that her cancer continues to disappear and we all try to stay positive and have hope.
My mom has always had a positive attitude throughout all of this. With the exception of when she went through chemo and radiation, she has managed to do most of the things she did before cancer. She tires easily and cannot do all that she used to do, but she paces herself. She really is amazing. She is 68 yrs old, and otherwise, a very healthy woman.
If there is any way we can help you more, please send me a personal email via this website. I will be sure to check it regularly.
Please try to stay positive and visualize your wife healthy and happy. I pray a lot and ask for angels to help me and my family daily. Help and strength always arrives for us in many ways throughout our days. It is very difficult, I know. But please try to have hope.
You are in my thoughts and prayers,
Scarlet0 -
Second OpinionArarat said:stage IV uterine cancer
Hi Scarlet,
I have been reading your mom's history.I hope she is doing better than before, and treatment is helping her.
I was very much following your posting because my wife may have the same disease..
stage IV, grade III.took 3 chemo treatments of Taxol/carbo did not help .. she took 15 times radiation (3000) units.. and pelvic tumors did not shrink enough..........mets to her lungs recently which was not there before..it was seen on CT scan but not PET scan done...
At this point her drs.. gyno/onco and radiation dr. are transferring her to a University hospital... I hope they give her something else that helps?
However her doctors did not give anything else but taxo;/Carbo.doc. said this is the best we have... that was all.
what do you think thru your experience.. an advice?
Ohh, she had endometrial adenocarcinoma.. (uterus)
can you believe it she was first diagnosed stageI,,, when she had a cyst removal.. when the doctor did D&C.. pathology repoert came back as stage I.. endometroid adenocarcinoma.. . she was scared of cancer stage I.. she wanted to have a complete hysterecomy.. that is when they found out that this was not stage I, but stage 4.. grade III.
How much you can believe the test, pathologist or the doctors??
Any commetns from you will be appreciated.
thank you,
Dear Ararat,
Have you taken your wife for a second opinion? Do you live near a hospital that specializes in cancer? Fortunately, we live in Boston, very close to Dana Farber. We are very happy with DF. It may be helpful to take your wife for a 2nd, 3rd opinion to make sure that they would treat her the same way her present doctors are treating her.
Scarlet0 -
Second OpinionArarat said:stage IV uterine cancer
Hi Scarlet,
I have been reading your mom's history.I hope she is doing better than before, and treatment is helping her.
I was very much following your posting because my wife may have the same disease..
stage IV, grade III.took 3 chemo treatments of Taxol/carbo did not help .. she took 15 times radiation (3000) units.. and pelvic tumors did not shrink enough..........mets to her lungs recently which was not there before..it was seen on CT scan but not PET scan done...
At this point her drs.. gyno/onco and radiation dr. are transferring her to a University hospital... I hope they give her something else that helps?
However her doctors did not give anything else but taxo;/Carbo.doc. said this is the best we have... that was all.
what do you think thru your experience.. an advice?
Ohh, she had endometrial adenocarcinoma.. (uterus)
can you believe it she was first diagnosed stageI,,, when she had a cyst removal.. when the doctor did D&C.. pathology repoert came back as stage I.. endometroid adenocarcinoma.. . she was scared of cancer stage I.. she wanted to have a complete hysterecomy.. that is when they found out that this was not stage I, but stage 4.. grade III.
How much you can believe the test, pathologist or the doctors??
Any commetns from you will be appreciated.
thank you,
Dear Ararat,
Have you taken your wife for a second opinion? Do you live near a hospital that specializes in cancer? Fortunately, we live in Boston, very close to Dana Farber. We are very happy with DF. It may be helpful to take your wife for a 2nd, 3rd opinion to make sure that they would treat her the same way her present doctors are treating her.
Scarlet0 -
stage 4 Uterine CancerArarat said:stage 4 Uterine Cancer
Hi scarlet25,
My wife is very new member of this site, she diagnosed stage 4 grade 3 Endometroid adenocarcinoma ( Uterine Cancer).I like to hear form you, how did you handle your Mom's situation.. what kind of chemo regiments she used?, did it work, how about the lung tumor?
My wife's regiment was Taxol/Carboplatin.. 3 times she took and 15 times..( 5 times/week Radiotherapy) for the pelvic and vaginal tumor....
tumor got smaller but not enough... and doctors are loosing faith in her and dropping her becasue after 3 time of Chemo, she did not see any benefit of it... And recenly at CT scan,,, they saw small dots of tumor on both lungs ... so this is an aggresive cell... BUT what else can be done? other chemo regiments?.. or side drugs that I read on this site with Chemo that works on tumors/....................any ideas and advice for me?
please respond,
thank you,
Hi Ararat,
I am had early stage in 06 and had hysterectomy etc. followed by radiation - nodes washing clean so should have been fine. 11/07 three lesions on my lungs. I had Adriamycin/Taxol/Cisplatinum after four treatments lower lung lesions resolved and upper left apex greatly decreased. All returned to original size by end of July. I went to Dana Faber in Boston and they suggested a clinical trial for Avastin - I am working on getting into one some where - also I have changed my diet to vegetarian - no dairy etc. Also am doing wheatgrass juice daily and green drinks. They also were grim with me, but I plan to be around for many more years to come- so fight on do research on diet!!!0 -
endometrial cancer...recurrentNeverLoseHope2 said:Hi Everyone,
First Scarlet, I want to say sorry about all your moms going through and hope she will be ok, but,
I have to say, i am totally confused and a bit scared, from reading your post....maybe im missing something....you said, all the tests, and biopsies, and d&c? showed no cancer? then how do you know she has uterine cancer? maybe i didnt read it right.....also, you said they found a nodule in her lung? i thought nodules in the lung were benign? Reason, im saying this, i had a pet/ct scan just this May, and it didnt change from the same spot nodule they saw back in Nov, if it doesnt change in size, normally that means its benign...most, maybe not all, lung nodules are suppose to be benign...now you have gotten me scared, wondering...if my nodule in my lung, is a metastizes, from either my breast cancer or rectal/anal cancer.....or from this bleeding i have been having since Nov....im a breast cancer survivor and anal cancer survivor....when they radiated my anal....they radiate the outside of the pelvic...they said, id probably go into menopause, and for 1yr and 8 mths didnt have a period....but then this Nov 2006, i started noticing, stop lite pink, to red bleeding, and been that way ever since, on and off, not everyday, and not heavy bleeding, but, the gynos, cant get a biopsy of my uterus, because the rads changed the pelvic organs......they told me i had a nodule on my leg lung, i was shocked, but the pet scan place, said, comparing it to a nodule in nov, for the same lung, same spot, it never changed in size....it was a 3mm...my oncologist said, its so small no surgeon would think to even biopsy it....after reading your post, you have me wondering...what this is now...or are you sure your mothers nodule is benign or malignant? is it a nodule or a lesion? terminology makes a big difference....im sorry but your post was a bit confusing to me....you also spoke of vaginal paps or biopsies and then said something about its results, for uterine cancer? vaginal paps or biopsies, have nothing to do with the uterus.
I hope you can clarify for me, some of the things i asked in my reply to you, im very concerned.
NeverLoseHope, You sound like you know so much about this and I feel I know nothing so maybe you can give me some advice. I was diagnosed with end. cancer on April 5, 2006 while coming out of anesthesia. My doctor eventually told me I was stage IIIb, I believe. I had no idea what she was talking about and to naieve and stupid to ask. She sent me to a Gynocologist/Oncologist a week later. He immediately said I needed chemo. My chances were 70% with chemo...20% without. The did a blood marker (CA125 and my markers were 1380). I didnt know what that meant either...now I know thats a very high number. I started one month later on a drug combo of carboplatin and taxol and went once every 3 weeks. I had 6 treatments. My CA125 after the last treatment was 16!! But a year later is what up to 52, so they had me come back in for 3 treatments every 3 weeks of just carboplatin. On the last treatment I had an allergic reaction to it and my doctor said I couldnt take platinum drugs ever again.
Over the last 4 years I have had the usual blood work and CT's every 3 months. The cancer did metastasize to my lungs in 2007 but was growing at a very very small rate. I have 11 lesions total on both lungs...the largest being 12mm. Once this was found out, my doctor said since it was growing at such a slow rate he didnt see the need for chemo yet and put me on the oral drug Megace twice a day. Then I got the bad new my doctor was retiring and there isnt another Oncologist/Gynocologist around here so he ask a coleague of his to take over my case. Her specialty is breast cancer. She took my case in Oct. of 2009. She told me instead of Megace I should be on Tamoxifen. So I started tamoxifen twice a day in Oct. 2009. I had a CA125 in Nov. and it was 73. Had another on Deceber 18...it was a little over 100. Had last one on February 12, 2010...it was 279!!! Yesterday, March 3 2010, I started chemo again...just Taxol, for now. I was shock to find out I was now in Stage IV. Iremember my old doctor telling me late last year he didnt understand why I was still alive...that I should have died almost 2 years ago. I told him maybe it was my faith in God, my faith in the drugs...and yes, even my faith in my doctor!
Now I want to know can a person survive Stage IV cancer?? I have searched and cant seem to find any answers. I know how doctors feel...they dont believe you can. But I want to know how I have gone this long with NO pain or other side effects from the cancer like they all say I should have. Is this normal?? Any help would certinly be appreciated by you or anyone! God Bless You and have a wonderful day. Thank you........snowy11580 -
yes you cansnowy1158 said:endometrial cancer...recurrent
NeverLoseHope, You sound like you know so much about this and I feel I know nothing so maybe you can give me some advice. I was diagnosed with end. cancer on April 5, 2006 while coming out of anesthesia. My doctor eventually told me I was stage IIIb, I believe. I had no idea what she was talking about and to naieve and stupid to ask. She sent me to a Gynocologist/Oncologist a week later. He immediately said I needed chemo. My chances were 70% with chemo...20% without. The did a blood marker (CA125 and my markers were 1380). I didnt know what that meant either...now I know thats a very high number. I started one month later on a drug combo of carboplatin and taxol and went once every 3 weeks. I had 6 treatments. My CA125 after the last treatment was 16!! But a year later is what up to 52, so they had me come back in for 3 treatments every 3 weeks of just carboplatin. On the last treatment I had an allergic reaction to it and my doctor said I couldnt take platinum drugs ever again.
Over the last 4 years I have had the usual blood work and CT's every 3 months. The cancer did metastasize to my lungs in 2007 but was growing at a very very small rate. I have 11 lesions total on both lungs...the largest being 12mm. Once this was found out, my doctor said since it was growing at such a slow rate he didnt see the need for chemo yet and put me on the oral drug Megace twice a day. Then I got the bad new my doctor was retiring and there isnt another Oncologist/Gynocologist around here so he ask a coleague of his to take over my case. Her specialty is breast cancer. She took my case in Oct. of 2009. She told me instead of Megace I should be on Tamoxifen. So I started tamoxifen twice a day in Oct. 2009. I had a CA125 in Nov. and it was 73. Had another on Deceber 18...it was a little over 100. Had last one on February 12, 2010...it was 279!!! Yesterday, March 3 2010, I started chemo again...just Taxol, for now. I was shock to find out I was now in Stage IV. Iremember my old doctor telling me late last year he didnt understand why I was still alive...that I should have died almost 2 years ago. I told him maybe it was my faith in God, my faith in the drugs...and yes, even my faith in my doctor!
Now I want to know can a person survive Stage IV cancer?? I have searched and cant seem to find any answers. I know how doctors feel...they dont believe you can. But I want to know how I have gone this long with NO pain or other side effects from the cancer like they all say I should have. Is this normal?? Any help would certinly be appreciated by you or anyone! God Bless You and have a wonderful day. Thank you........snowy1158
Hi there,
I was diagnosed stage 4 recurrence, uterine/ovarian in 2007. When they opened me up lymph nodes were involved and my tumor markers were up. I did six treatments of taxol carbo. The cancer went away but I was diagnosed with breast cancer in Jauary of 2008. My oncoloogist at the time did not scan me at all for over a year. It wasn't until I called my GP with unbearable back pain that she sent me for and MRI and the cancer had recurred to my spine, pelvis sacrum and chest. I had radiation for the spine and switched to a doctor who would not give up on my. I wish my previous onco had considered that I was allergic to the platinum chemo's. As I now have hearing loss and no sense of smell. I am told that I will be in and out of treatment for the rest of my life. I am on tipotecan which is shrinking the tumors and after 16 treatments they are going to give me a break. You can live with cancer,and have a decent quality of life. you just need the right support system and above all have faith in your doctor.
Staging is a label and it is something that I do not except. Miracles happen every day and I believe that is you meditate, cut out dairy and processed foods, have some fun and find balance between the life, treatment and work you are doing well. If taxol didn't work totally the last time ask your doctor about gemstar or typotecan. These drugs are used for people like us who have had recurrences and are sometimes very effective.
Also please look up in the NYTimes about KAtherine Russell Rich, a breast cancer survivor of 17 years. They told her she had two and here story is amazing.
IF you are in Los Angeles, I highly recommend Dr John Glaspy at UCLA. He is awesome.
Good luck
jjski300 -
Stage IV Uterine Cancerjjski30 said:yes you can
Hi there,
I was diagnosed stage 4 recurrence, uterine/ovarian in 2007. When they opened me up lymph nodes were involved and my tumor markers were up. I did six treatments of taxol carbo. The cancer went away but I was diagnosed with breast cancer in Jauary of 2008. My oncoloogist at the time did not scan me at all for over a year. It wasn't until I called my GP with unbearable back pain that she sent me for and MRI and the cancer had recurred to my spine, pelvis sacrum and chest. I had radiation for the spine and switched to a doctor who would not give up on my. I wish my previous onco had considered that I was allergic to the platinum chemo's. As I now have hearing loss and no sense of smell. I am told that I will be in and out of treatment for the rest of my life. I am on tipotecan which is shrinking the tumors and after 16 treatments they are going to give me a break. You can live with cancer,and have a decent quality of life. you just need the right support system and above all have faith in your doctor.
Staging is a label and it is something that I do not except. Miracles happen every day and I believe that is you meditate, cut out dairy and processed foods, have some fun and find balance between the life, treatment and work you are doing well. If taxol didn't work totally the last time ask your doctor about gemstar or typotecan. These drugs are used for people like us who have had recurrences and are sometimes very effective.
Also please look up in the NYTimes about KAtherine Russell Rich, a breast cancer survivor of 17 years. They told her she had two and here story is amazing.
IF you are in Los Angeles, I highly recommend Dr John Glaspy at UCLA. He is awesome.
Good luck
jjski30
Just found this site. I was diagnosed at age 45 w/ endometrial cancer (hormone negative). That was 12 years ago. Had hysterectomy & radiation and it seemed like I was cured. But have had serious intestinal problems since the radiation. Eight years ago, nodes were found in my lungs, biopsy confirmed it was metasticized endometrial cx. Had Carboplatin and taxol chemo for 9 mos. PET scan showed no cx. 18 mos. later, new tumors in lungs. Had to stop carbo becz of allergic reaction so did 9 mos of taxol alone. Seemed to be gone. 6 mos. later back. Then had Doxil for 9 mos, 2 times. Then Megace, but had to stop after blood clot 18 mos ago. PET Scan in Aug. showed tumors still growing but slowly. Next option is Avastin with Topotecan. Will probably start in January if I still have insurance. It keeps going up and up because of my preexisting condition. I hope I make it to 2014 when the new Health Care Reform law goes into effect. With every treatment there are side affects. Most are temporary and go away after chemo ends. But some are permanent. Worse one now is that I have neuropathy in my feet which makes it painful to stand or walk for long. As my Doctor told me, you have to balance your quality of life with cancer treatment, compared to stopping treatment and maybe feeling better but not living as long. As for me, I have had to adapt to not being able to work or do many of the active things I used to (dancing, traveling, hiking, skiing, etc.) My brothers, and most of my friends who are my age can still do these things. But I still enjoy my life and don't want to give up treatment. I can still swim and love that. I have lots of friends, and am very close to my father and brothers and have a wonderful boyfriend, who fell in love with me during the first chemo, when I was bald! I have been going to a support group too. I love to watch good DVD movies, and listen to audio books from the library when I am too sick to do other things or to leave home, I have learned to knit and make jewelry for gifts. All these things have helped me cope with the stress of cancer. I do have my ups and downs of course, I do get depressed at times, but I have been able to cope. I think 12 years with metasticized cancer to the lungs is a long time to survive, but as my Doctor told me, each person is different and you are not a statistic. A positive outlook, and support from family, friends, and a support group have kept me alive. And the next thing I want to do is take art classes at the community college and learn to draw and paint with watercolors! It's good to have things to look forward to.0
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