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Are there any other MMMT survivors out there?

1975goatgirl
Posts: 1
Joined: Nov 2009

I am a 34 yr old woman who was diagnosed with stage 4B uterine MMMT. Mine had metastasized to my omentum, colon, appendix and most of my pelvic and abdominal lymph nodes. I am 3.5 years in remission. I would love to hear from other survivors. I know this is a very uncommon cancer in relation to most uterine cancers. I've never talked to anyone else with it.

My email is kisses4fluffies@yahoo.com

Thank you,

Carrie

Clouth
Posts: 10
Joined: Jul 2012

Ok. :)

ellaintexas
Posts: 2
Joined: Sep 2012

I had been having spotting for several years along with weight gain in the pelvic area. In ten years I went to eight doctors and was told it was because I was post-menopausal or that I was eating too much. Couldn't get anyone to send me for any tests though one doctor said she'd do some "digging around inside" and see if she spotted anything! No tests first though. Finally I found a doctor who immediately sent me for tests and then to an oncologist. Within 4 weeks I had major surgery, a complete hysterectomy and my spleen removed. The tumor in my uterus was so massive the oncologist said it must have been growing for at least ten years.The diagnosis was MMMT (carcinosarcoma)stage 3c. I was told 95% of the cancer was removed and I need to undergo chemo for the little that is in the lymph glands. I am feeling great and am very optimistic about the outcome. I will beat this. I don't have grandchildren yet and when they do come along I don't want them to just be told about me, I want them to remember me. Baking cookies, reading to them and doing all the grandmotherly things.

Hang in there ladies! We are stronger than we think. I should have been dead with this monster after only a few years. I survived ten with it and the rest is going!

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jazzy1
Posts: 1387
Joined: Mar 2010

Welcome and so sorry to hear about your long 10 yr journey. Wow...now that's persistence, but sure don't like the outcome...CANCER.

I'm a stage 3c MMMT survivor -- cancer found in 1 lymph node, had total hysterectomy, 6 rounds chemo plus 33 sessions pelvic radiation all in 2009. Today 3 years NED (no evidence of disease), I'm so very grateful to be here, as learning to love each and every minute of each and every day. We never know what tomorrow will bring.

Keep up the positive mind, as our minds do control our bodies. Keep the goals of seeing your grandkids one day and doing all the grandmotherly things. It will happen, you must believe that deep down inside as well as your mind.

Enjoy life, it has an expiration!
Jan

ellaintexas
Posts: 2
Joined: Sep 2012

I am constantly having fluid build-up in my chest and abdomen. This will be the fourth time it's drained. I had asked my oncologist about it before my surgery and he said it was caused by the tumor. He assured me that after it was removed the problem would go away. Well, the tumor was removed 7 weeks ago and I still have it. Asking him again just brought a "the body will eventually take care of it" response.

Does anyone else get this and if so do you know what causes it and when it will stop?

Thanks. And BTW how do I post without replying to someone? Can't figure that out! LOL!!

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debrajo
Posts: 795
Joined: Sep 2011

Hi Ellain! Go back to the uterine page where all the questions are. In the left side there is a place where it says "Post new topic" Click there and it will take you to the page where you can post your question/topic. Best, Debrajo(a;so in Texas)

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marti968
Posts: 31
Joined: Apr 2013

Thanks will go try and see if I can do it.  It shoujld be easier than that.  Should be at the top of the page to give one the choice to post comment or respond to comment.  aoh well just a little thing.

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marti968
Posts: 31
Joined: Apr 2013

I have lost about 100 pounds since this picture.  I went from 119 to 398 from 09-2000 to 12-2000.  Since cancer have finally lost and am losing the weight that I wanted to lose and couldn't.  I an scooter dependent so do not get as much exercise as I want to do.  Am unable to take more than a few steps then fall so I pretty much stay on the scooter. This picture is in the BX-Power Zone behind me note the TVs  I am learning how to use my cell phone and still need to know so much about it. So I am really listening to the clerk.

I live on base now since they offered the base houseing to the retired Military so I took advantage of the offer.  Love living here but the security makes it extremely hard for me to live here much longer and am going to move very soon.  Depending on the results of the ER visit 4 days ago the place I am going to move to is still pending.

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txtrisha55
Posts: 432
Joined: Apr 2011

Which BX PowerZone?  What base do you live on?  I live in Dallas,TX and work for the Exchange HQ.  Best wishes to you and hope you find a new place that is as good as where you are. trish

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marti968
Posts: 31
Joined: Apr 2013

I have moved.  I used to live at Luke AIr Force Base Glendle, AZ.  Loved living on base but the security was too high and no one could come in to see me unless I was able to go to the south gate to get them a pass or if I wsent off base to McD's and picked them up in my car or get in theirs if I could even get in.  I ride an adult scooter and can't walk so well anymore and get tired of kissing he floor, LOL!  So like a good girl listen to my doctor and ride the scooter to shop etc or the little guy that stays in the house so it stays clean ahnd I can get around. I rented this home because I have so much "junk" to get rid of and am working on that with the housekeepers and anyone else that wants to take something off. So when the lease is up am going to move into Independent Living (I can be there with the aides and can stay until the end as long as I have the aides and other help)

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txtrisha55
Posts: 432
Joined: Apr 2011

dup

txtrisha55's picture
txtrisha55
Posts: 432
Joined: Apr 2011

So sorry to hear about your 10 year journey. I also am in Texas in the Dallas area. I was post menaposed when I started flooding in March 2011. Had a D&c which was sent to pathology. Found out 1 April that it had MMMT cancer cells .Had full hystrectomy 8 April which said it was stage 3c1 becuase it was in 1 lymph node. I had 6 rounds od carbo/taxal and no radiation. So far so good and I am NED. I did not have and fluid build up so I cannot give you any advise in that area. There are other ladies on this site that have had fluid build up. As debrajo told you to post a new subject to go to the main page and click on post a new topic. Wishing you all the luck now that you have joined this group sorry you had to join it thoiugh. trisha

I believe
Posts: 38
Joined: Oct 2012

Hi All,

I would like to share with you my story.

My mom (71 years old) started bleeding early september 2012 and she didnt take it seriously and thought it is because she was tired from working at home, after 1 week of bleeding a mass fell down from the uterus having a size of 10*5.3*4cm, she was shocked to see this tumor and she put it in a bag to send it for test.

The results of the test was that its an MMMT or carcinosarcoma cancer. The doctor informed us that he cannot rely only on the mass that fell down and since in the IRM a small part of the mass is still in the uterus, he would need to do another test after the operation. The results of the remaining part in the uterus was also MMMT so he infomed us that a total hysterectomy and removal of lymph nodes is required.

The operation took 6 hours and it was painful to my mom but she's doing fine now after 2 weeks of the operation and recovering.

The uterus and all the lymph nodes and other related organs were sent to test and the results were that the cancer is only confined in the uterus (penetrated 1/3 of the myometrium)and all the other parts were clean.

The doctor informed us that its stage I or II of carcinocaroma due to the size of the mass and that she will need to have 4 sessions of chemotherapy (Endoxan & Carboplatin).

We will start the first session of chemo on the 16th of November 2012. Mom is feeling positive and she's willing to fight this beast. The doctor said that this treatment will not make the hair fall and she's happy for that.

Finally, I would like to wish you all ladies the good heath because you are very precious to your families and I thank God everyday for giving me this great MoM.I will keep you in my paryers and If you believe in GOD, you will be healed.

If you have any suggestions or if you think that the treatment (Endoxan & Carboplatin) is not the right treatment just let me know.

God Bless you

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txtrisha55
Posts: 432
Joined: Apr 2011

Stay off the Internet, there is not a lot of updated information there. Did they do a tissue assay or estrogen positive or negative test? The tissue assay shows which chemo drugs are the best for the tumor that your Mom had. The estrogen test tells if the tumor is hormone positive or negative, if positive she will need to try and stay away from hormones that have positive effect on her. I was 55 when I was diagnosed last year with carsonoma sarcoma (MMMT) cancer. The tumor in the uterus was a 1A but it was found in 1 lymph node so upgraded to stage 3C1. I had 6 rounds of carboplatin/paclitaxel and no radiation. The paclitaxel side effects was that you do lose you hair. Mine was down the middle of my back. Cut short before the first chemo then shaved it bald once it started falling out. For me, it was no big deal. I just went bald. I could not find hair loss as a side effect of either of the chemo drugs listed in your message. Drink plenty of liquids to help with the constipation that does come from all the drugs. I did not take a lot of supplements during the chemo as my doctor told me not to, but there are some ladies on this site that did. Ask her doctor. A lot of the ladies also changed their diets. Make sure you get copies of all her reports, it helps to have them to refer back to them. Will be praying for a complete recovery and good outcome from the chemo. trish

BeckyC
Posts: 11
Joined: Oct 2012

Good Morning,
I was so interested to read your story because my mother who is 82 was also diagnosedwith uterine cancer in Sept 2012. She had light bleeding but they also found a bloody cancerous mass in uterus after all the tests. She had an abdominal hysterectomy last week ( which only took 1.5 hours thank goodness!) and the surgeon said it was MMMT stage 1C ( at least for now- the pathology isn't back yet) There was no indication that the cancer was outside the utereus but was through the endometrium and myleometrium but not through the serosa. Our gyn/onc however said that due to the extreme agressivness of this cancer my mother will have both chemotherapy and radiation. And she also said her hair would fall out. She hasn't given us the exact chemo drugs yet - needs to get the pathology back and is looking at clinical trials too. I would ask your doctor about radiation - that seems to be very effective against this cancer. My son is a physician (emergency medicine) so not a cancer doctor but says it is VERY important to have a gynecologist/oncologist for treatment of this disease. Doctors are seeing more of this kind of cancer as women are living longer and I think treatment is better. Dont' read survivial stats on the internet - scary. But my son says there are very few studies of this kind of cancer and the high morbidity rates are due to the older age and generally poorer health of many older women.
I will pray for your mother and wish you the very best. I hope this information helps some!

I believe
Posts: 38
Joined: Oct 2012

Trish and Becky - Thanks a lot for your prompt replies and valuabe information.

Trish- for the estrogen test, I am not sure if it was part of the test but in the test results they mentioned the following sentence (its in french and i did the translation) " Epithelial component and Cytokeratin CK7 and CKC and positive EMA" I am not sure what this sentence means.

Becky - For the radiation point. I will make sure to ask the Doctor why he didn't suggest radiation treatment.

Thanks again

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jazzy1
Posts: 1387
Joined: Mar 2010

I as well was diagnosed with MMMT and had it in 1 lymph node, so I was stage 3c....similar to Trisha. I had carboplatin and taxol which is GENERALLY the first round of chemo for our cancer, but everyone is different. Taxol is the drug which causes one to loose hair and yes I was a "bald eagle".

My doc suggested radiation since the chemo was in pelvic node, and wanted to zap the node affected. Since your dear mom didn't have it outside of uterus, possibly why not suggesting radiation, but do ask. Only reason I'd check further on radiation, this MMMT is a very aggressive type of uterine/ovarian cancer and one must hit it really, really hard. Fill all guns with lots of ammo, according to my doc. My butt was dragging by the end of treatments, but here I am today, 3 years since treatments ended and have NO EVIDENCE OF DISEASE.

Truly don't know it all, but can only suggest what my docs recommended. As well, try to find a doc who's familiar with MMMT and hoping you have OB/oncologist, not medical oncologist. This as well keeps your guns loaded to fight.

Your mom is so lucky to have you by her side...makes her journey so much easier.

Jan

I believe
Posts: 38
Joined: Oct 2012

Thank you Jan.

I agree with your points that's why I want to double check on the treatment as I don't my mom to have a light treatment and at the end of the treatment it would come up again.

Actually two doctors are handling my mom's case,the first doctor who did the operation is Gynecologic/oncology and the other who's handling the treatment is Hematology-Oncology

Excellent to know your story that after 3 years of treatment there is NED. I wish you all the health.

Thanks

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jazzy1
Posts: 1387
Joined: Mar 2010

One other question you might ask, why the mix of drugs they're suggesting for your mom? As mentioned the ones I had -- carboplatin & taxol -- are the first line used most often. But...we all know different strokes for different folks, plus different and new updates for drugs. Curious if nothing else if you have an answer.

Both the type of docs you suggested are EXCELLENT. Can't remember if this was suggested...DON'T BOTHER TO RESEARCH THIS PARTICULAR TYPE CANCER....nothing looks good. More and more treatments we're finding TODAY are showing good results with long-term results. As well, these good results aren't showing up on the latest notes.

As well, I'm on a yahoo group for MMMT and can tell you a good chunk of our groupies are survivors 5+ years. This gives all of us hope to know the future can be bright and cheery.

Keep the faith as your mom will be with the long termers....

Jan

I believe
Posts: 38
Joined: Oct 2012

Hi Jan,

I asked the doctor why he is suggesting the drugs Endoxan/Carboplatine instead of Taxol/Carboplatine for my mom, his answer was that Taxol/Carboplatine would be too strong for her taking into consideration that she's 72 years old and have some medical issues (overweight, taking diabetes drugs, cholesterol and blood pressure drugs).

I told him that I heard that for MMMT and since it is aggressive the standard treatment would be a mixed of both radiation and chemotherapy, he said that is correct but again due to age of my mother and her general health he would recommend a moderate treatment instead of too strong treatment.

I hope that the proposed treatment would be enough to heal my mother and I will keep you updated with any new information.

Rab

DrienneB
Posts: 11
Joined: Aug 2013

Hi Jan,

I'm encouraged by your posts, and those of many others on this site. I was 51 and diagnosed this past April/May with MMMT, Stage 3B. After surgery, I started 6 courses of Taxol/Carboplatin in June. I'm hoping to be finished by the end of September, but might have to delay my next course (5th) due to low Neutrophils.

After my surgery, my parents--both medical professionals--were so discouraged by the statistics they suggested I might consider opting out of chemo!! It's so great to hear from you and others, and not feel doomed and in solitary exile! Moses asks God to "teach us to number our days," and I don't mind thinking more seriously about a closer end than imagined. Yet, like all of us here, I want to live and do what I can to fight this, and am so glad to know of other peoples' experiences.

Cheers to everyone here who is seeking to learn more and encourage others!

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txtrisha55
Posts: 432
Joined: Apr 2011

No one has an expiration stamp on them, as there is only One that can tell when that will be.  Fight with all your might.  Your parents are may be reading information that is based on old statistics and not current.  Medicine is changing and new technology is coming along.  I was diagnosed in April 2011, had complete hysterectomy with 10-12 lymph nodes removed.  I was told it was stage 3C MMMT.  I had 6  carbo/taxol and no radiation.  I just pasted my two year mark from date of last chemo treatment and I am no evidence of disease (NED). 

Remember we are here to support you.   Praying for all. trish

 

DrienneB
Posts: 11
Joined: Aug 2013

Trish,

 

I'm very encouraged to hear that you're doing so well! My staging at diagnosis/surgery is similar to yours and I am also close in age. Fifty-two. I'll have my last carbo/taxol treatment this week, and am trying to decide about radiation.

 

 

I have high myometrial invasion and malignant cells in my washing. Two radiological oncologists are in favor of external pelvic radiation, but my surgeon (gynecological oncologist) is against it. She believes we should not do radiation until/unless another tumor develops in my pelvic region. But I am still mulling the decision over and praying about it. I have an appt. tomorrow with one of the radiological oncologists, but will probably not be ready to decide for a little while longer.

 

 

Did you consider radiation therapy? Were you advised against it? In my case, I actually brought it up, and then was referred to the other doctors.

 

 

I’ve been doing okay with the chemo, but am anxious to move on from patient mode. Are you doing anything differently since your diagnosis (exercise, diet, etc.)? I thought I was living in a pretty healthy way before all of this happened, so am not sure how crazy to get over this thing. I don’t want to be obsessed with the issue, but want to do what I can.

 

And I believe the outcome is in God's hands, and am asking for a willing spirit either way. I am greatly relieved to be reminded via the stories/comments/encouragements in this group and others that we are not statistics.

 

 

Best to you,

 

Jane in Berkeley, CA

 

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marti968
Posts: 31
Joined: Apr 2013

Where is this group.  It would be nice to see positive for a change.

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marti968
Posts: 31
Joined: Apr 2013

Oh I just learned so much from your comment.  How lucky to have a son as a doctor.  I fit right in with "tBut my son says there are very few studies of this kind of cancer and the high morbidity rates are due to the older age and generally poorer health of many older women.he older person".  Gives more hope this message.

ghee56
Posts: 3
Joined: Oct 2011

Don't read too much on the Internet. I read a great comment by a writer who had just been diagnosed with colon cancer. He said the weatherman predicted sun for the next day, but it snowed...cancer survival predictions are just like that. Just a general guess...not specific to your Mom. I did not have chemo, but needed no help during radiation...drove myself. Hope your mom has similar success.

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marti968
Posts: 31
Joined: Apr 2013

3-29 D & C then told 04 02. GYN sent me to GYN Oncologist

I am 73. I guess I have the rarest MMMT. It is a result of the Fibroid Tumors if I am understanding it correctly.  Or at least I do have Malignant Mixed Muellerian Tumor for those of you who do not know what it is. It is only in the Uterine Area and they left the large Tumor in there after the D and C 3-29-2013. So I am just starting this mess. I was not even going to do a Hysterectomy since I am not in the greatest health with lack of thyroids and Parathyroids, Erratic Blood Sugars due to the thyroid and parathyroid problems. I have Emphysema. Am way over-weight at 205 lbs (used to be 398 in 09-2000 started weight at 119 until these glands were removed. I am only 5 ft 2. I has taken all the years to get down. Any way, Chemo is pretty bad and am not convinced to do it. I cancelled surgery since i am moving. Do not even want to do that really. I do not even know where to start. I live alone and no one has called. I called a hospice and they were helpful for later on when they are necessary. You all seem to have lived a lot longer than I have found on the medical sites that I researched. So that is some hope. So now there are at least  2 of us Carrie. 

 

nevadavox
Posts: 3
Joined: Apr 2013

Dear marti968 ~ My partner Michelle has been diagnosed with the same -- carcinosarcoma/MMMT in her uterus. I read your post to her. We want you to know that even if you feel alone, you've got compatriots in this experience. Michelle has been told she is probably a stage 3. She's scheduled for radiation treatments to begin on Wednesday. She's 49, and her tumor is necrotizing (growing so fast that it outpaces the blood vessels supplying it, so some of the tissue is constantly dying. So instead of blood and spotting, she is dealing with a ton of discharge that has a very bad/foul odor. Not fun -- not at all. But while statistics are scary with MMMT, they're also outdated. There are a lot of women who make it through this if they get the right treatment and the right support. We just wanted to say that we're grateful that you're here, and that we are also here, dealing with the same thing. Much hope and healing to you!

~ Nick

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marti968
Posts: 31
Joined: Apr 2013

Oh here are some 2013's. I have read everything and re read these.  I thank you for your answer to me and am sorry that I did not know it was here, but they have kept me so busy I just did not have time to get online.  3 hr. drive a day m-f to doctor for external radiation then to Hospital for 6 internal I think it was 6 maybe 8.  I actually have had to go to the ER 4 days ago and my doctor is out of town and do not know what they out come is.  I asked if I had rectal cancer but did not ask about others so ER doc said no.  But did say I had irregularities what ever that is so am anxious for my doctor to get back for a few days of vacation. I have a million questions. I will watch for your answers.  I am wer70@cox.net.  If you want to email me direct by all means.  Thanks again for the reply.  I meant I was alone living wise but I have God and several wonderful friends that call.  Now that they have snowbird back to AZ will try to do some socializing.  LOL!   

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marti968
Posts: 31
Joined: Apr 2013

A lot has changed in my progress since I first came on here.  I live alone but not truely ever alone.  I came in here to see what others were doing.  I had a  horrible doctor and he was not much help emotionally and sadly so was his medical assistant.  We did not mesh and I left his office ever to return.  I did some reasearch on CyberKnife and elected to go see this doctor. Doctor Stegman has got to be the best.  He treats you like a human being and not just a number or a pice of meat to cut up.  Will not go into that since I do not want to waste my time with negative thoughts and issues.  Suffice it to say that I am very happy with my current doctors. There must be a lesson in all of this but have not really figured out what it is. Knowing others are going thru this does help with coping and in general I have a very positive outlook and I think that is a good thing to have. I will fight this thing with everything that I have.  Time will tell what the results will be. Marti Limpert

Reggie63
Posts: 5
Joined: Sep 2013

Thank you 1975goatgirl for your post.  Yours was the first posting I saw & it made me feel so much better.  After doing some more reading, I found other encouraging stories.  My mom who is 72, was recently diagnosed with stage 3c MMT Uterine Carcinosarcoma.  She underwent a radiacal hysterectomy & lymphectomy. Out of 3 lymph nodes removed, the cancer was found in one. She is currently undergoing 7 weeks of both chemo & radiation & what they call "vaginal boosts".  So far she is 2 weeks in and has not had any of the side effects she was told would follow, thank God.  The survival rate statics we were given were not very hopeful but after reading several of the postings on this site, I now have hope.  Thoughts & prayers to you all.  

 

cleo
Posts: 125
Joined: Sep 2009

I always figured that the 'survival statistics' data is suspect  as how can the statistics for those who have survived be gathered accurately??  Therefore..best to totally disregard it.

There are many like me.  Stage 3/4, uterus/bladder/lymph glands.   Have slight L leg lymphedema due to the removal of the large number of affected glands but 6 years on remain well.  Your mum sounds strong...keep supporting her and be totally positive.    I worried more about what this was doing to my family than myself.   My son was a common sense/ no nonsense strength throughout.   I wish you all well.

Reggie63
Posts: 5
Joined: Sep 2013

Thank you cleo for your reponse!  After reading most of the stories & the length of time since first diagnosis as I said, I have new hope & yes I will disregard all the stats & be positive in my thinking.  Six years is simply awesome & I am glad you have done so well.  My mom is a very strong person.  Even though she is not being very positive at this time, she is going through treatment like a trooper.  I am hoping to get her to read the stories on this site because she still has the statics given to her in her head & is figuering on only being around another year or two. Thanks again & wishing continued good health!

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marti968
Posts: 31
Joined: Apr 2013

You know it is kind of hard not to feel that way but I decided I am not dying of cancer but living with cancer.  I never call it my cancer or at least try not too. If I refer to it as My Cancer then it owns me instead of me owning myself.  I don't know if that makes sense with what I am trying to say.  Mostly I am positive but there have been a few tears especially when my "grandson" came to visit and he is not even 2 months old.  We waited for 9 years for him and it made me tear because of all the things I am going to miss.  I have never had children but I helped raise his father when his dad's mom passed away and I also helped raise his sister. I was in charge of the unit and I made the schedule so I made sure that my hours mostly were opposite of his so he could stay in the military.  We did not do favoritism he had to do all the shifts like everyone else but I was only day shift unless I had to pull a shift because of shortages so sometimes it was a challenge to do it but we made due.  When I think of all the obsticles and challenges I have had to endure in life this is really just another hurdle to jump and try to conquer.  Attitude I think has a lot to do with things also I think.  I am about your mom's age I think.  I am 74 as of August 31st. 

Reggie63
Posts: 5
Joined: Sep 2013

I have read both of your lasts posts, first of all I want to thank you for your service to our country & the sacrifices you made for us.  Also thanks for your honesty about your feelings and tears.  My mom who is 72 has moved on to another stage of acceptance & just wanting to get it all over with.  She has completed 33 rounds of radiation & has 4 more treatments of chemo to go.  She actually sounds a lot like you, she is very very strong & I completely admire her courage.  She has been through many many awful things prior to this and I admired her so much then & twice as much now.  When we feel sad about what is going on with her she'll tell us, "I'm not dead yet!"  I think we feel more sorry for ourselves & what is to possibly or not possibly come than she feels for herself.  God bless you marti968 & keep up the fight!

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marti968
Posts: 31
Joined: Apr 2013

Your mom and I are from a generation of fighters and make do.  Most of us had hard lives and easy was a luxury most of us did not have. We are not whimps but sometimes not so strong either.  We do not give up the fight unless there is no choice and even then we look for choices.  (Or this is how I see many of the people I know in the 70-90 age bracket)

I was/am proud to serve in the military of this great nation.

ghee56
Posts: 3
Joined: Oct 2011

I was diagnosed in 2004 at age 56....stage 1C. Had a complete hysterectomy followed by radiation, internal (ugh) and external. Followed a cancer diet for about a year after from a book sent by a doctor friend....think it was called the cancer survival diet....not sure since I passed it on to others. Lots of exercise and prayer. Only residual problem is pain in the area, probably from internal radiation. Best of luck to you....How were you diagnosed? Mine was a fluke diagnosis as the result of a D&C to remove a cyst.

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marti968
Posts: 31
Joined: Apr 2013

I did not ask what stage I am but think I saw a paper with Stage 4.  I went in for a regular PAP and surprise surprise they sent me immediately to the X-Ray dept.  and do not pass go.  I got to that clinic and they said Marti Marian is waiting for you down the hall turn right then left.  i have gone to the base for 38 years so most of the clinics know me and I know a lot of them.  Then next thing you know I am in the hospital having a D & C. I saw the sonogram and knew I had the cancer I saw it in three places but did not know what kind.  I am retired Military then Civilian RN.  And have a lot of oncology in my background.  I know how to take care of a cancer patinet but did not know how to be one so I said that to my doctor and I told him I wanted to know everything.  It has been quote and experience being on this side of the coin. Thank God I was good to my patients and really have nothing to regret. Now it is me and there are lots of wonderful people that are doing their best to help me keep on this earth a little longer and with God's blessing hope to stay here awile.  Will see what happens. By reading these posts I see there are lots of questions that I need to ask. Thanks everyone for being here.  Like you ghee56 I have pain in the abdominal area not too strong but annoying.  I have horrible gas pains and spasms and they hurt worse.  I am and have not vomitted nor have I had constipation or diarrhea so that is good.  I would like to be around for awhile to make sure the fur kids get raised.  LOL.  Such little darlings and they give me the have to part of my life right now.  Get out of bed feed them take them outside etc.  Althoght I am a fighter and have not felt sorry for myself and I decided I was going to fight this cancer with everything that I have to fight with.  Well take care and will look forward to yhour posts. Marti

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txtrisha55
Posts: 432
Joined: Apr 2011

I agree attitude does have so much to do with it. Have a good one and continue the fight.  Thank you for your service both in the military and as serving as nurse.  trish

RoseyR
Posts: 464
Joined: Feb 2011

DEAR GHEE,

 

Am I reading your message correctly--that you were dignosed with stage 3C MMMT yet have survived eight years now?  Please confirm whether this is true, for if so, it gives great hope to all of us.  

 

Are we, moreover, to assume that you had NO chemo?  (I see you had both types of radiation--but no chemo?)

 

Finally: Have you been strict with your diet or eaten whatever you've pleased?  Any supplements or exercise regimens we should know about?

 

Perhaps you could respond by starting a new thread: ""Have Survived More than Five Years with MMMT"

 

Best,

Rosey

treezee
Posts: 4
Joined: Nov 2013

you sound like me...  I had very bad bleeding in April of 2012 and then went to my doctor a few months later because it did not improve.  He sent me to my first gyno he said I had polyps and fibroids so my first operation of 2013 was May 7 and 6 weeks later told I had abnormal cells.  Visit to gyno 2 for hysterectomy and had that done October 15 and a week later told cancer.  After that went to see the cancer doctor and after 2nd cancer doctor visit found out that I have MMMT and then December 12 had the other ovary out and lymph nodes out.  I go today for my results. 

My hysterectomy gyno when he told me he said he was in complete shock of my diagnosis of cancer and MMMT. 

Ocalagal99
Posts: 16
Joined: Nov 2013

So I had a lot of vaginal bleeding and had a sonogram where a "polyp" 5cm was dicsovered.  Had a D&C last Friday with polyp removed,  all went well.  On Tuesday got a call from my Dr. to come down asap to see him.  Well, the path report came back with MMMT - 
Had a PET scan on Thursday and, thank God, it had not penetrated the uterine wall and no other cells were discovered.  (Here's hoping it was read right).

So off to Tampa General Hospital next Tuesday for surgery on Wednesday.  
I don't know what stage it is, but since it is localized should be low.  We'll see.

They thought they might be able to do robotic surgery, but we will have to see.

Has anyone had a rad. hysterectomy done by robot and how was the recovery and how long did you have to stay in hospital.

I am obviously totally new to this and still can't believe it since I am totally healthy with no signs in my blood or anything else.  I am 72 and I'll be damned if I let this beat me!

Ro10's picture
Ro10
Posts: 1482
Joined: Jan 2009

Sorry you need to join this site, but feel free to ask any questions.  I had robotic surgery at Moffitt cancer center in Tampa.   I was out of the hospital the day after surgery.  Recovery was good with minimal pain. You jucpst have 5 little incisions.  My surgery was 6 hours long.  When they got in there, it was UPSC, so they took 25 lymph nodes, too.

good luck with your surgery.  I hope you have a gyn/onocologist doing the surgery.   I hope you do have a low stage.  In peace and caring.

Ocalagal99
Posts: 16
Joined: Nov 2013

Thank you for your reply.  I have Dr. Mitchell Hoffman at Tampa General Cancer Center and yes, he is a GYN/ONC surgeon, who has a stellar reputation.  My PET scan showed only localized in the uterus after I had a D&C, so hoping for robotic so I can get home to my furries.
Sorry, I don't know whaUPSC is?  Newbie!
What kind of regiment did you have to do after?  Chemo/Radio etc.
How was your stay at the hospital?  How soon did they get you up and able to go to the bathroom?
Thanks for any info you can give me.  Still can't believe it!  Damn!

Ro10's picture
Ro10
Posts: 1482
Joined: Jan 2009

UPSC is uterine papillary serous cancer.  It is a rare and very aggressive cancer.  It acts much like ovarian cancer.  I did have the sandwich treatment which is 3 chemo treatments, then radiation , and then 3 more chemo treatments.  The chemo was taxol/  cisplatin.   I started chemo 3 weeks after surgery and it was every three weeks.

the stay in the hospital was good.  I went in the morning of surgery.  The surgery was 6 hours.  I did not get to a room until 3:00 in the afternoon.  I could have gone home the next morning, but the doctor did not make rounds until late afternon.  I had a catheter until the next morning.  I got up the next morning, but made sure I turned every two hours while I was in bed.  I also did deep breathing.  Nobody encouraged me to do these things, but being a nurse I knew how important it was to do these things.  I had a pump to use for pain, but I only used it once before I was going to get up.  

When I got home I walked every couple hours and gradually increased the amount I walked.  Those first walks were pretty short, but gradually they got longer.  Drinking plenty of fluids is important and keeping ahead of constipation is important.  Apple juice is what works for me. 

I hope you surgery goes well and you won't need any further treatment.  Feel free to ask any questions or express any of you fears and anxiety you may be feeling.  We understand those feelings.   In peace and caring.

Ocalagal99
Posts: 16
Joined: Nov 2013

Thank you so much.  Sorry you had USPC and I hope it is taken care of.  Any reactions to the chemo/radio? Hair fallout? Nausea? 
Have only begun to realize how terrifying all these monsters can be and am staying positive, except for short spurts of terror.  
Have my consult with Dr. Hoffman tomorrow morning and surgery, at this time, is scheduled for Wednesday morning at 11 AM.  Since you say it can be 6 hours would expect to be in the hospital certainly for overnight if not longer, depending if he can do it robotically.

Did you experience any incontinence afterwards?

Did they let you bring a cell phone?  Am taking my portable CD player with plenty of music, ear plugs, eye shades and fruit juice boxes.
Is there something you were not allowed to have?
Blessings to you!

marti968's picture
marti968
Posts: 31
Joined: Apr 2013

I am rusty since I have been retired since 1983 but so much of what you stay is the old standby for care even when I was still working.  But of course somethings never changed.  You gave great advice that is for sure.  I kind of play things by ear right now but I am making sure that I get the right diet.  I am guilty of eating when I am hungry and not when I should.  Sometimes I used to forget to eat all day.  I have always taken enough fluids so did not miss the food.  I now make sure I eat 5-7 small meals a day and include everythig the cancer nutritionist has told me to eat.  I eat small meals because I get full fast and if I only ate 3 times a day I think some of what I am supposed to eat I wouldn't.  Like a lot of seniors i have developed bad eating habits.  I am so glad that you are on this site and so many others.  It does make it easier and you don't only have the doom and gloom online to relate to.  Thanks for you knowledge. 

Ocalagal99
Posts: 16
Joined: Nov 2013

- Am finding that taking the Colace the Dr. prescribed for constipation does not work for me.  Too harsh!

I had been taking Psyllium Husk Caps before my surgery on a regular basis instead of that awful Metamucil and they have worked great.  I take two in the AM before breakfast and 2 before my evening meal.  Drinking plenty of fluids always works, but the caps make things easy and smooth and no urgency.

Just posted below about my DaVinci robot surgery.  Your information was really helpful.  My surgery was 3 hours.  Thanks for sharing!

Hope all is well with you.
Merry Christmas and a healthy and happy New Year!

Ocalagal99
Posts: 16
Joined: Nov 2013

So I had a radical hystorectomy performed by DaVinci (robot) method on November 20th.  3 hour operation and everything was removed, uterus, ovaries, tubes, cervix, and lymph nodes. Just 5 small 1 inch incisions.  2 days hospital stay.

Am recovering pretty well with just some nagging twinges and pain on the right side where there were 2 incisions from the scope.  Amazing how the general anesthesia saps your strengths even if you're as strong as an ox.  Getting my strength back now and will be allowed to drive this week.  Hurray!

The pathology report has come back and they had a Cancer Board Meeting at Tampa General Cancer Center today and my case was discussed.  It turns out that "ONE of many lymph nodes showed cancerous cells".  So will need chemo and radiation as a "sandwich" starting January after my 6 week post op check-up.

Not quite sure how I am processing this, since I thought all was gone since the cancer had not penetrated the uterus.

Will do whatever they suggest since my GYN/ONC is tops in his field.  He is a Professor & Director at Division of Gynecologic Oncology, Dept. of Obstetrics and Gynecology at Tampa General Hospital Cancer Center. 

Will find out what course of treatment (drug cocktail) and hopefully get a lot of questions answered that I learned from these wonderful posts.  It's great to have the input of so many fellow survivors and I thank them for their generosity in sharing with all of us.

Merry Christmas to everyone and a healthy and happy New Year!

Ro10's picture
Ro10
Posts: 1482
Joined: Jan 2009

Glad you were able to have the surgery robotically.  It makes recovery much quicker.  Sorry to hear you had cancer in a lymph node.  I suspect your chemo will be taxol and carboplatin every three weeks.  You will lose your hair from the taxol.  Taking your pills for nausea are important to ward off the nausea.  Glad you will be able to enjoy the holidays before you start your chemo.  Glad you have such confidence in your doctor.  That is important.  Just remember you did have major surgery and be kind to yourself.  Feel free to come back with any questions you may have.  In peace and caring.

Ocalagal99
Posts: 16
Joined: Nov 2013

Thanks, Jan, and the best of holidays to you as well.  Will follow your advice!  Have been looking online for wigs, 

Since I will need chemo (3) in January am wondering if I will be able to drive myself to and from the appointment.  I have been blessed with a wonderful neighbor who has been driving me to and from my surgery and appointments in Tampa which is 1 1/2 hours from here, but feel bad that I have to take advantage of her generosity so much and if I don't need to would like not to burden her with these appointments.  Luckily they will be local, but still.  Only about 20 minutes from my home.

Also, will have radiation (3) after first chemo and then more chemo (3) afterwards.

Can someone tell me about this, please?

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