My Mothers Mmmt Story (The Short Version)

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!

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.

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!

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)

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

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!

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!

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.

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?

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.