CancerCompass message board discussion started by Kehoops on 6/8/2005 http://www.cancercompass.com/message-board/message/all,2213,0.htm Thu, 20 Nov 2008 00:00:00 GMT Thu, 20 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mother was dx'd in April 2005 with uterine carcinosarcoma (MMMT). She was staged at 1b (tumor invastion to less than 1/3 of myometrium, clean washings, no evidence of disease spread beyond local area). She was given 6 rounds of brachytherapy in July/August 2004 and she did just fine with that. At the time of diagnosis, her CA-125 level was 44. Post-surgery, the marker dropped to 11 (7/04) but her most recent reading was at 33 (6/05). Though this is still in the 'normal' range, we are not happy with the trend or how close we are to being in the abnormal range (35 and above is considered elevated). Has anyone else been using the CA-125 marker to monitor disease stability? Anyway, mom sees her gyn-onc every 3 months. She had quarterly CT scans for the 1st year and she is now doing semi-annual scans for the next 2 years. Is that along the same lines as what you all are doing? My mother is being treated at the Cleveland Clinic. God Bless you All! Kehoops Wed, 08 Jun 2005 00:00:00 GMT I have a simular situation I have been diag. 1B grade 3 cancer. Surgery TAH removal of cervix, tubes and overies. The CA125 is a marker but do not rely on this alone. It has a lot of false negatives. Make sure to have the CA125 (the latest Version - some doctors are not using the latest form of test so ask for the latest one), CT scan and a PET Scan every 3 to 6 months for 2 years. Doctors will combine the CT with the PET. The pet is the best test out there.... read www.cancercompass.com/cancer-news/1,9400,00.htm Keep me abreast as to her outcome. I want to follow up with someone that has a simular story as mine. Wvgal Tue, 26 Jul 2005 00:00:00 GMT My mother (age 60) was also diagnosed with Stage 1C Uterine Cancer, Grade 2. Since this diagnosis was "borderline", the gynecologist surgeon did not recommend radiation but my mother pushed it. So today I joined her for an appt with the radiation oncologist who highly recommended a round of external radiation followed by internal radiation. My mother decided to go forth with the radiation which I am glad. Do you think this is the right thing to do? Do you know of any serious side effects. Also, your information regarding the follow up exams for the next 2 years (every 3 months) was VERY helpful. My thoughts are with all out there fighting and surviving cancer! Amarie1 Fri, 05 Aug 2005 00:00:00 GMT Radiation is a personal choice and everyone has to decide what is best for them. For me I did not chose it because I agreed with my doctor. All 13 nodes were clear and the cancer was contained in a polyp in the uterus with minimum invasion to the miometrum What radiation does is kill any cancer cells left in the the area that is being radiated that the doctor did not detect. It is specific to only that area such as the pelvic. After 3 months and having a CT and PET scan there were no cells found in my entire body and CA125 was 11. Yes we tossed the coin but it fell in our favor. If we had radiated we would have radiated for no reason. Your dependence of the CA125 is not to be considered a concern because the test is not very accurate. You must do a CT and PET scan. Those are the most accurate for detecting spread. (Adenocarcinoma 1B grade III) Wvgal Sat, 06 Aug 2005 00:00:00 GMT It is all so personal!! And NO ONE can tell a patient what they HAVE to do. Eacha nd every patient needs to weigh their lifestyle choices with thier particular disease state with their quality of life requirements, etc. It sounds like the choice you made was a great path to take, given your particular circumstances. I do not know very much about the type of cancer that you have. I have done most of my research on MMMT. This is an EXTREMELY aggressive cancer that generally does not respond well to msot interventions. There is some research to suggest that intervention in an early-stage patient is advisable and possibly life-saving. But honestly, with MMMT, who the heck knows?? My mother was advised to do radiation and chemo, but she only agreed to the radiation. Personally, I agree with what she decided to do for her particular case, but my brothers did not (onw brother is a doc....) God Bless us all!!! There is no RIGHT and WRONG answer!!! I hpe we all can find peace with wahtever decisions we or our loved ones make.... My job is to support my mother by giving her information about different options, but to let HER decide what she wants to do. And I will do that job better than any other job I have ever had!!!! :-( -Kathy Kehoops Tue, 06 Sep 2005 00:00:00 GMT Mom had a recurrence of her MMMT in October 2005. Her recurrence was diagnosed via two methods: 1) her CA-125 soared from its previous reading of 33 to a shocking 288 over a 3-month period, and 2) a CT scan showed a very small lesion in a node her retroperitoneal cavity. This node was subsequently biopsied and determined to be positive for carcinosarcoma. Since then, mom has had 4 cycles of chemo (carboplatin/taxol) and has 2 more to go. The great news is that she has had a total response to her chemo regimine. Her CA-125 dropped from 288 to 105 after 1 treatment and down to 25 after 2 treatments and down to 17 after 3 treatments. We do not have her post-4th treatment readin gyet because they do the readings 2 weeks after the chemo. Also, a CT scan after her 3rd cycle showed No Evidence of Tumor (NED). We were shocked and devastated to learn of the recurrence, but we are thrilled about the outcome thus far and hope and pray for continued remission. As always, anyone dealing with this disease (or any of its cousins including ovarian carcinosarcoma or uterine adenosarcoma) are welcome to join us at our MMMT YAHOO group to learn more. Good luck to all! Kehoops Thu, 12 Jan 2006 00:00:00 GMT Wvgal: I am very happy that your CT scans and PET scans have come back with great news. We all love to hear great news! I hope your news remains great and that you are disease free for the rest of your life! I did want to point out one thing for the benefit of others who may come across this string, however. You mentioned in your post that you were diagnosed with a uterine adenocarcinoma. I wanted to point out that I was referring to a uterine CARCINOSARCOMA. While both are uterine cancers, the similarities pretty much end there. Fortunately, adenocarcinomas are the most common form of uterine cancer (about 95-97%) and they have a pretty favorable outcome (lower recurrence rate, higher rate of response to chemo, less tendency for distant spread, etc.) - especially when caught in earlier stages. Uterine carcinosarcomas are part of the much smaller group of uterine sarcomas that make up roughly 3-5% of all uterine cancers. These malignancies are very different in their behavior, treatment and prognosis. Within the family of uterine sarcomas, there are carcinosarcomas (MMMT), adenosarcomas, endrometrial stromal sarcoma (ESS) of high and low-grade makeup, leiomyosaromas, and others. Within this group of rare cancers, treatments and outcomes are very different. Unfortunately, MMMT (carcinosarcoma) has historically had a poor prognosis - even when caught in earlier stages. Consequently, physicians tend to be even more aggressive and vigilant in treating patients diagnosed with MMMT and/or other uterine sarcomas. I just wanted to make sure that people understood the differences between the differnt types of uterine cancers that have been discussed in this string. GOOD LUCK to you Wvgal!!! It sounds like you are on the path to recovery! Kehoops Thu, 12 Jan 2006 00:00:00 GMT I just wanted you to know my medical records show I had adenocarcinoma (Clear Cell)of the endometrium wall. Clear Cell is extremely rare and only 4% of cancer patients ever have this type cancer. You are right about the adenocarcinoma being a member of a better prognosis but clear cell puts met at an extreme other side of the scale. There is very little research on Clear Cell and I am basically a test mouse at this time. To date I am cancer free but I have many more rounds to go. I have not met my year anniversary. I have had 2 rounds of CT's and CA125's and all are below 15. I will have my next round in a month. I was shocked to hear your mom had such an early reoccurence. I was modeling with her because she was so closely related to my cancer of stage 1B Grade III clear cell with clear washings and no spread. Wvgal Thu, 12 Jan 2006 00:00:00 GMT My mom was diagnosed in May 2005 with Stage IC grade 3 uterine carcinosarcoma (mixed mesodermal tumor). She underwent 6 rounds of chemo, 3 radiation trmts. She did not have any positive lymph nodes or washings, her first ct scan in september was negative for mets. However, friday was her first 3 month checkup since finishing her treatments. Her left leg was swollen to 3 times the other and she has complained to me about her stomach feeling "bloated". The Dr. said these are signs of recurrence, ordered a CA125 and another CT scan of the abdomen. The CA125 came back yesterday at a "4". Which I thought was good until I found out the blood test is really not that helpful in the detection of uterine cancer. I am very concerned seeing that all the research I have been doing online seems to say no matter what you do for this type of cancer there really is no hope. I am worried. I cant seem to find any information about "symptoms of recurrence" if anyone has any info please let me know. I am sure there is probably alot of different symptoms depending on where it recurrs. Also, the Dr. has never metioned anything about a PET scan and if he thinks this is a recurrence why not do a scan of her chest, abdomen and pelvis like the last time? Dgtr3 Thu, 09 Feb 2006 00:00:00 GMT My wife discovered a lump on her perineum (the muscular area between the vagina and the anus) and when it was surgically removed it was malignant. She was referred to a Gynecological Endocrinologist and had we believe all of the necessary tests, CT, Pet, MRI, CBC, and XRays and as a result found that one of her ovaries had a lump as a result of that they removed her Ovaries, Fallopian tubes and her Omentum. She had a previous hysterectomy and had had some left over scaring from having had Endometriosis; those were removed as well as lymph nodes from her right side. The result of all of this was that none of the pathology came back positive and it was all cancer free. The margins of the lump from the perineum that were tested came back positive so they did not remove all of the cancer cells present during the initial surgery. Now the Doctor is going to perform an additional surgery to her perineum to attempt to remove what might have been left from the original surgery. She also had a suspicious lump near her pancreas and they do not believe that is related, but she asked for another blood test to look at her CA19-9.We do not have the results of that blood test yet. Her CA125 was very low, but according to her Doctor the occurrence of this type of cancer is exceptionally rare. Following her next surgery next week she will begin Chemotherapy for six months. I'm not sure of the particular drugs to be administered yet. We have requested a second opinion and are planning to go to the Dana Farber Cancer Institute in Boston as soon as possible to have another set or sets of eyes and minds look at what the source might be. Her current Doctor said that he is not sure of the source since the original supposition was ovarian cancer. Yesterday in a visit with him, he said that he did not believe she had Vulva Cancer and since it was not Ovarian Cancer, we are confused as to the source. She does not know for sure if her Mother took DES during her pregnancy but suspects that she did. So for now we are just trying to better understand what to do and we are looking for others for insight. Jfk02 Fri, 09 Jun 2006 00:00:00 GMT I was just wondering what the ctscan revealed. My mother's experience is so much like yours too. She was diagnosed in May, MMMT, stage 1C. She refused chemo and radiation but has recently decided to take the radiation. She started about 2 weeks ago. So far, there's no sign of recurrence. I just thought it odd to find someone with such a similiar story. Any info would be great. I know this is a nasty cancer and I've done alot of research so I'm well informed but anything new would be great. Good luck and I so hope your mom is well. Paigeluv Tue, 03 Oct 2006 00:00:00 GMT I was wondering how your mother is doing. How did the radiation work for her? Did she do chemo as well? My mom was diagnosed in early August and her situation sounds similar to your mom's. It seems to grow extremely fast. My mom is supposed to start radiation and chemo in the next week and I was just wondering how it went for your mom and how all of the side effects are. It is so hard to see my mom in so much pain and so week. Any information or advice is appreciated. Thanks! Anders Wed, 25 Oct 2006 00:00:00 GMT I'm not sure if you were asking me that question or not so I'll reply just in case. She done great with her radiation. Tomorrow is her last treatment and then she'll have internal radiation (brachytherapy) so we're unsure how many times she'll need that. She had no real side effects from the external radiation. One bout of diarrhea with severe cramping through the whole 5 wks. She would get tired afer each session for about 3 hrs and then would be fine. Everyone is different though. Everyone's experience can't be compared to another's. There is late effects that can start months after radiation has ended. I hope your mother does great through her treatments! Paigeluv Wed, 25 Oct 2006 00:00:00 GMT I stopped searching the web for info on Mmmt information for a while. I'm glad to get even the short story of your Mom. I was diagnosed with the same stage Mmmt in June of 2006. I had a total hysterectomy and both external beam and HDR brachytherapy radiation. Finished with that in October, and now feel like a lost soul. Am trying to stay healthy with nutritional plans, exercise, etc., but do wish there were more info on the disease. I did not have a pre-surgical CA 125, but about 1 month post surgery it was at 25. It subsequently dropped to 8, but has been creeping up one digit per month to 12 at the moment. I think the jury is out on the validity of this as a marker for Mmmt metastasis, which of course is what we are so fearful of. Anyone else have any info? Snowqueen Thu, 28 Dec 2006 00:00:00 GMT My mom died last week from recurring uterine carcinosarcoma.  She had it 10 years ago, underwent extensive chemo treatments, and survived 10 years. When it came back it had spread to her liver, lymph nodes and abdomen.  She only survived 3 months after the diagnosis. She has 2 chemo treatments, but it did no good.  Gerri Momche Mon, 08 Jan 2007 00:00:00 GMT Hello, My name is leann and i am 38 years old nad have been diagnosed with MMMT i have had my surgery and have done my chemo four lots of it 24 hours a day for four days(pretty Brutal) then i did six weeks of radiation and two lots of brachtheraphy, i see my doctor every three months as well as my gyne as well as my chemo doctor so every month i see a doctor but so far so good and it has been twelve months Yippee lannie Fri, 08 Feb 2008 00:00:00 GMT hello, i am in australia and i do not know about these markers you are talking about i never get blood taken i only had it taken when i was having chemo to make sure my blood cells had rebooted themselves to be killed agin with another dose of chemo please explain what these markers do?i am having ct scans every three months as after my surgery they told me that they did not have aclear margin on my left side, but so far so good, i am very young to have this disease so the doctors have told me, i feel very lost and there is not alot of research into this disease and can not find alot about it either just been told very aggressive and do not get to excited as it is a very bad cancer  lannie Fri, 08 Feb 2008 00:00:00 GMT Hi there.  I'm new to this site.  My Mom has recently been diagnosed with MMMT, and she's scheduled for surgery March 4.  What were your symptoms, and how long did you have them before diagnosis/surgery?  Wishing you continued wellness.  Thanks, Patty pattyb Wed, 27 Feb 2008 00:00:00 GMT  On 7/26/2005 Wvgal wrote:I have a simular situation I have been diag. 1B grade 3 cancer. Surgery TAH removal of cervix, tubes and overies. The CA125 is a marker but do not rely on this alone. It has a lot of false negatives. Make sure to have the CA125 (the latest Version - some doctors are not using the latest form of test so ask for the latest one), CT scan and a PET Scan every 3 to 6 months for 2 years. Doctors will combine the CT with the PET. The pet is the best test out there.... read www.cancercompass.com/cancer-news/1,9400,00.htmKeep me abreast as to her outcome. I want to follow up with someone that has a simular story as mine. Hello. I'm wondering, where is your relative receiving treatment . Also, do you know if they are using PET for other types of carcinosarcoma such as MMMT?    Thanks for your reply. questions Sun, 09 Mar 2008 00:00:00 GMT  On 12/28/2006 Snowqueen wrote:I stopped searching the web for info on Mmmt information for a while. I'm glad to get even the short story of your Mom. I was diagnosed with the same stage Mmmt in June of 2006. I had a total hysterectomy and both external beam and HDR brachytherapy radiation. Finished with that in October, and now feel like a lost soul. Am trying to stay healthy with nutritional plans, exercise, etc., but do wish there were more info on the disease. I did not have a pre-surgical CA 125, but about 1 month post surgery it was at 25. It subsequently dropped to 8, but has been creeping up one digit per month to 12 at the moment. I think the jury is out on the validity of this as a marker for Mmmt metastasis, which of course is what we are so fearful of. Anyone else have any info?I'm curious to find out how you made out with your therapy. Do you think it was worth it? I have recently been diagnosed and need to make some decisions Christy Tue, 03 Jun 2008 00:00:00 GMT