Uterine Carcinosarcoma, any survivors out there?

agokay1995

Just want to thank you ladies

Just want to thank you ladies all so much and I'm sending you lots of love! Glad to hear you're all doing well. Will come back soon with updates till then. 

Nellasing

agokay1995 said:

Just want to thank you ladies

Just want to thank you ladies all so much and I'm sending you lots of love! Glad to hear you're all doing well. Will come back soon with updates till then. 

Hi Ashleig

I don't have a lot to add to what the other ladies had to say but I did want to say welcome and that I am so sorry to hear about your brother and now your mom.  That will now doubt make you even more anxious and that is very normal.  Do try and keep empowering yourself with research, come and ask your questions and try to take things day by day.  It is tough- the waiting- but you both are strong young ladies and I KNOW you can make it.  Here for you  (((HUGS)))

Kvdyson

A different opinion

Agokay, my experience was a little different. I was diagnosed with carcinosarcoma (aka MMMT) after a D&C on 9/3/16 and was in surgery on 9/23/16. I don't want to scare you but if the pathology report actually indicates MMMT then it is quite urgent that it is removed asap.

If the doctor who read the CT scan said it was not urgent then maybe the pathology report indicated something different? Or maybe he/she is not familiar with MMMT (which is not unusual because it is relatively rare)? Have you seen the pathology report yourself?

If it is MMMT, then it's important that the gyn-onc who is going to do the surgery have experience treating it (not just knowledge of it). Waiting 6 weeks to remove this aggressive cancer could mean the difference between stage 1 and stage 4 - it grows that fast. Has he/she talked to you about their experience treating it? Also, has your Mom considered getting a second opinion?

Again, not trying to scare you but just wanted to be sure that you have another opinion. Wishing you and your Mom strength and hope, Kim

 

Ddkos

Uterine carcinosarcoma

i added a comment in August 3013, not quite five years after diagnosis (stage 3b) in October 2009 and didn't come back to the site again until now.   I am now almost seven years out of treatment.  My gyn oncologist released me from her care at the end of five years--March 2015.   Last year i asked my GP to run the CA-125 at my annual physical.   The count was at its lowest point.   I stated that I did not drastically change my diet in my original comment--and no, in response to a question asked,  I am not vegetarian!  My 32-year old niece, who is vegetarian, has stage 3 astrocytoma, and my brother, who was vegan has terminal stage four colon cancer.   Neither did I take massive new supplements.   I stayed positive, lived in my faith, and continued teaching my line dancing classes.   I try to eat a balanced diet but do not obsess over every bite.  No extremes!  I have some nerve damage in my feet from the chemo, but chemo itself was very easy for me.   The radiation caused some colon damage which still causes minor issues--have to know where bathrooms are--just in case who knows what may cause an issue.   Are these side effects I have difficulty living with?  No!   For anyone facing a new diagnosis--stay positive, don't stress over the statistics, and live each day to the fullest.   The person who seems the healthiest in a family can be the one gone first!   

Angelapo

Ddkos said:

Uterine carcinosarcoma

i added a comment in August 3013, not quite five years after diagnosis (stage 3b) in October 2009 and didn't come back to the site again until now.   I am now almost seven years out of treatment.  My gyn oncologist released me from her care at the end of five years--March 2015.   Last year i asked my GP to run the CA-125 at my annual physical.   The count was at its lowest point.   I stated that I did not drastically change my diet in my original comment--and no, in response to a question asked,  I am not vegetarian!  My 32-year old niece, who is vegetarian, has stage 3 astrocytoma, and my brother, who was vegan has terminal stage four colon cancer.   Neither did I take massive new supplements.   I stayed positive, lived in my faith, and continued teaching my line dancing classes.   I try to eat a balanced diet but do not obsess over every bite.  No extremes!  I have some nerve damage in my feet from the chemo, but chemo itself was very easy for me.   The radiation caused some colon damage which still causes minor issues--have to know where bathrooms are--just in case who knows what may cause an issue.   Are these side effects I have difficulty living with?  No!   For anyone facing a new diagnosis--stay positive, don't stress over the statistics, and live each day to the fullest.   The person who seems the healthiest in a family can be the one gone first!   

Thank you!

You give us hope! My mom is going through radiation for stage 3c2 and having a tough time. I appreciate your supportive words! God bless 

KTMay

Ddkos said:

Uterine carcinosarcoma

i added a comment in August 3013, not quite five years after diagnosis (stage 3b) in October 2009 and didn't come back to the site again until now.   I am now almost seven years out of treatment.  My gyn oncologist released me from her care at the end of five years--March 2015.   Last year i asked my GP to run the CA-125 at my annual physical.   The count was at its lowest point.   I stated that I did not drastically change my diet in my original comment--and no, in response to a question asked,  I am not vegetarian!  My 32-year old niece, who is vegetarian, has stage 3 astrocytoma, and my brother, who was vegan has terminal stage four colon cancer.   Neither did I take massive new supplements.   I stayed positive, lived in my faith, and continued teaching my line dancing classes.   I try to eat a balanced diet but do not obsess over every bite.  No extremes!  I have some nerve damage in my feet from the chemo, but chemo itself was very easy for me.   The radiation caused some colon damage which still causes minor issues--have to know where bathrooms are--just in case who knows what may cause an issue.   Are these side effects I have difficulty living with?  No!   For anyone facing a new diagnosis--stay positive, don't stress over the statistics, and live each day to the fullest.   The person who seems the healthiest in a family can be the one gone first!   

May I ask what chemotherapies you were treated with?

Always love a success story! What type of uterine cancer did you have and what chemos were you treated with some 7 years ago? How many rounds?  

Yogini60

MMMT

Hello ladies! I am new here and I have been diagnosed MMMT stage 3c. I am very sad and scared because I don't know what to expect. Doctor said I need chemo, radiation and brachi... Next week I have the contrast tomography to know how much the desease has spread... Any advise? I hope to find the strength I need to face this......

 

Soup52

Yogini60 said:

MMMT

Hello ladies! I am new here and I have been diagnosed MMMT stage 3c. I am very sad and scared because I don't know what to expect. Doctor said I need chemo, radiation and brachi... Next week I have the contrast tomography to know how much the desease has spread... Any advise? I hope to find the strength I need to face this......

 

Yes, it is scary and the

Yes, it is scary and the waiting for test results is difficult. We have all felt this so your feelings are natural. I was diagnosed with endometrial clear cell cancer, another agressive type and I have been through all the treatments you mentioned. Take it one step at a time. You may have chemo first and then radiation or something called sandwich treatment with several rounds of chemo, then weeks of radiatio, and chemo again. I guess I'm unusual in that I had radiation after my surgery and before chemo. Whatever your doctor prescribes there are many threads on our site that give much info on each treatment. Continue to ask questions but try not to search the Internet as you'll find some info is older. Best of luck and keep us posted on your test results. We are all here for you. We understand...

Lou Ann M

Yogini60 said:

MMMT

Hello ladies! I am new here and I have been diagnosed MMMT stage 3c. I am very sad and scared because I don't know what to expect. Doctor said I need chemo, radiation and brachi... Next week I have the contrast tomography to know how much the desease has spread... Any advise? I hope to find the strength I need to face this......

 

I am so sorry

welcome to the club no one wants to belong to.  You have found a good place for information, advice and suppor.  The ladies here are great at helping.  I don't have the same kind of cancer, mine is Serous Papillary Endometrial Andocarcinom.  Stage IV. I have been around for quite awhile.  There are others who do have the same kind as you and I am sure they will be along soon.  You will be strong enough.  You will amaze yourself with how Strong you will be.  As hard as it is try to take one day at a time and don't visit DR. google very often.  A lot of the info out there is old and outdated. 

Hugs and prayers, Lou Ann

Nellasing

Hi yogini60

so sorry you've had this news in your life.  It is very shocking at first and things seem all upside down and backwards.  Please know that it does get easier once you have a plan and start moving forward.  You will find taking it one day at a time is the best advice anyone can give you.  Trying to stay busy and occupied in between appointments etc.  Once you get a treament plan and get going you will be busy doing that and you'll be surprised how fast time does go by.   We're here for you- ready to link arms and walk along on this journey- nothing is off limits so vent, ask questions, whatever helps.  You can literally read for hours here and it's all good information which will help you think of questions you'd like to ask etc.  (((HUGS)))

Editgrl

Yogini60 said:

MMMT

Hello ladies! I am new here and I have been diagnosed MMMT stage 3c. I am very sad and scared because I don't know what to expect. Doctor said I need chemo, radiation and brachi... Next week I have the contrast tomography to know how much the desease has spread... Any advise? I hope to find the strength I need to face this......

 

Yogini60

welcome. I was also diagnosed with 3C carcinosarcoma in June 2015. There are a few of us  3cers on the board and I am sure you will hear from them soon. since you say that you have been staged, I am assuming that you have already had a hysterectomy. It is true that chemo and often radiation are recommended for this cancer. Everyone reacts differently to the chemo, and you may very well have minor side effectS. I had 6 rounds of. Carboplatin and taxol 3 weeks apart, and my worst side effects were constipation and stomach pains. 

I finished chemo in Dec. 2015, brachytherapy in Feb. 2016, and scans showed me clear in May 2016. I have had a recurrence in my lymph nodes and am currently treating that with low dose chemo and hyperthermia. But I want to emphasize that I feel good with an excellent quality of life. 

The best advice I can offer is to take things one day or step at a time. As you move through this process, get copies of all scans and pathology reports. They will come in handy should you seek a second or third opinion as many of us do. It is scary, but once you get the results of the scan, and you and your doctors come up with a plan for treatment, you will feel much better. In some ways, the hardest part of this cancer journey is at the beginning when so much is unknown. And you will find that you are stronger than you know.

Hang in there. And come back and let us know how your scan goes.

SandyD

Yogini60 said:

MMMT

Hello ladies! I am new here and I have been diagnosed MMMT stage 3c. I am very sad and scared because I don't know what to expect. Doctor said I need chemo, radiation and brachi... Next week I have the contrast tomography to know how much the desease has spread... Any advise? I hope to find the strength I need to face this......

 

Hi Yogini. I'm another MMMT

Hi Yogini. I'm another MMMT/carcinosarcoma survivor. As others have said the treatment regimen is quite do-able. I had some days during chemo when I didn't feel quite as good but other days when I felt pretty close to normal. For me the worst effects were achiness in my bones and joints and some constipation. You've come to the right place for support and information. Everyone here understands what you're going through. I wasn't sure I had the strength to get through this either. I really surprised myself! You will too! I had hysterectomy/staging in Nov. 2015 and completed chemo and brachytherapy treatments in May 2016. I was staged as 1A but they found papillary serous as well as MMMT. I just found out I've had a recurrence in my lymph nodes but from all I've learned from others here and in another group I can see a way forward and that it's possible to live through this too and thrive!  

Kvdyson

Yogini60, I am so sorry that

Yogini60, I am so sorry that you had to join our group. This is a scary time for you, no doubt. Just know that there are many of us who have been in your shoes and have made it through surgery, treatments and for some, recurrences, and we are still here to tell our stories. You can be one of us, too. Please stay hopeful and come back to us with any questions or concerns. You may even want to start a new post so that the replies are easier to follow. Wishing you hope and comfort. Kim

Imlaurietoo

I was diagnosed with

I was diagnosed with carcinosarcoma in June 2015. I had a hysterectomy and only radiation. I’ve been reading these posts and so many of you had chemo. My Dr. told me that chemo is ineffective on this type of cancer. I have pushed along these last couple years pretending all is well and will be fine. I’m 44 with 3 kids and a husband, so I don’t feel like I have time to sit around and dwell on things. Lately, I’ve been feeling scared. I came here to see just how many survivors are on here and for how long. I had breast cancer at 28, had a mastectomy, did chemo, and basically the same thing as now; pushed on like nothing ever happened. My kids were 6, 3 and 10 months back then. What is the longest you all have seen people live with this cancer? Thanks! And I wish all of you ladies well!!!

TeddyandBears_Mom

Welcome Imlaurietoo.  

Welcome Imlaurietoo.   Unfortunately cancer changes us forever. I think we all understand your fear. I was diagnosed in 2015 as well and have my two year post treatment check up in February. 

That two year marker is huge. My doctors told me that my chances of recurrence are way less past that point. And, you are almost there too!  There are many ladies on this board that are 5+ years out from treatment and are doing well. And, we have lost many as well.  No one really knows and so we all try to push the fear to the back of our minds and live each day fully.

You may want to consider getting a second opinion just to ease your mind.  It certainly can't hurt.

Congrats on beating breast cancer too!

Love and Hugs,

Cindi

 

Imlaurietoo

TeddyandBears_Mom said:

Welcome Imlaurietoo.  

Welcome Imlaurietoo.   Unfortunately cancer changes us forever. I think we all understand your fear. I was diagnosed in 2015 as well and have my two year post treatment check up in February. 

That two year marker is huge. My doctors told me that my chances of recurrence are way less past that point. And, you are almost there too!  There are many ladies on this board that are 5+ years out from treatment and are doing well. And, we have lost many as well.  No one really knows and so we all try to push the fear to the back of our minds and live each day fully.

You may want to consider getting a second opinion just to ease your mind.  It certainly can't hurt.

Congrats on beating breast cancer too!

Love and Hugs,

Cindi

 

Thanks!

Thank you so much for replying, Cindi! Your words are very encouraging! I have an appointment on Monday and I’m going to insist on a full body scan. I haven’t had one since Nov 2015. I am going to talk to him about some of the treatments I see on here. I love my Dr but he needs to be a little more aggressive with me. I’m his youngest patient and he needs to keep me around for my kids ☺️ If I can be a help to anyone else, I’d like to do that too. I’m tired of pretending I’m not apart of the MMMT community and instead embrace it and work to make lives better for other women. I can’t find any research groups amd there doesn’t seem to be much public knowledge about us. Dont we need advocates too? Any ideas would be appreciated. I don’t know where to start.

derMaus

Imlaurietoo said:

Thanks!

Thank you so much for replying, Cindi! Your words are very encouraging! I have an appointment on Monday and I’m going to insist on a full body scan. I haven’t had one since Nov 2015. I am going to talk to him about some of the treatments I see on here. I love my Dr but he needs to be a little more aggressive with me. I’m his youngest patient and he needs to keep me around for my kids ☺️ If I can be a help to anyone else, I’d like to do that too. I’m tired of pretending I’m not apart of the MMMT community and instead embrace it and work to make lives better for other women. I can’t find any research groups amd there doesn’t seem to be much public knowledge about us. Dont we need advocates too? Any ideas would be appreciated. I don’t know where to start.

Have you seen this site? I'm

Have you seen this site? I'm not MMMT but I refer to it frequently: http://gcsproject.org/10-facts-about-mmmt-cancer/

usndlb

jazzy1 said:

Great Information

There's a lot of good topic threads on here from past years.  Suggest hitting the search button at the top and enter your topic of choice.  

 

Points below I find of interest --

 

• Avoid sugar, especially fructose. All forms of sugar are detrimental to health in general and promote cancer. Fructose, however, is clearly one of the most harmful and should be avoided as much as possible.
• Optimize your vitamin D. Vitamin D influences virtually every cell in your body and is one of nature's most potent cancer fighters. Vitamin D is actually able to enter cancer cells and trigger apoptosis (cell death). If you have cancer, your vitamin D level should be between 70 and 100 ng/ml. Vitamin D works synergistically with every cancer treatment I'm aware of, with no adverse effects. I suggest you try watching my one-hour free lecture on vitamin D to learn more.
• Limit your protein. Newer research has emphasized the importance of the mTOR pathways. When these are active, cancer growth is accelerated. The best way to quiet this pathway is by limiting your protein to one gram of protein per kilogram of lean body weight, or roughly a bit less than half a gram of protein per every pound of lean body weight. For most people this ranges between 40 and 70 grams of protein a day, which is about 2/3 to half of what they are currently eating.
• Avoid unfermented soy products. Unfermented soy is high in plant estrogens, or phytoestrogens, also known as isoflavones. In some studies, soy appears to work in concert with human estrogen to increase breast cell proliferation, which increases the chances for mutations and cancerous cells.
• Improve your insulin and leptin receptor sensitivity. The best way to do this is by avoiding sugar and grains and restricting carbs to mostly fiber vegetables. Also making sure you are exercising, especially with Peak Fitness.
• Maintain a healthy body weight. This will come naturally when you begin eating right for your nutritional type and exercising. It's important to lose excess body fat because fat produces estrogen.
• Drink a pint to a quart of organic green vegetable juice daily. Please review my juicing instructions for more detailed information.
• Get plenty of high quality animal-based omega-3 fats, such as krill oil. Omega-3 deficiency is a common underlying factor for cancer.
• Curcumin. This is the active ingredient in turmeric and in high concentrations can be very useful adjunct in the treatment of cancer. For example, it has demonstrated major therapeutic potential in preventing breast cancer metastasis.⁹ It's important to know that curcumin is generally not absorbed that well, so I've provided several absorption tips here.
• Avoid drinking alcohol, or at least limit your alcoholic drinks to one per day.
• Avoid electromagnetic fields as much as possible. Even electric blankets can increase your cancer risk.
• Avoid synthetic hormone replacement therapy, especially if you have risk factors for breast cancer. Breast cancer is an estrogen-related cancer, and according to a study published in the Journal of the National Cancer Institute, breast cancer rates for women dropped in tandem with decreased use of hormone replacement therapy. (There are similar risks for younger women who use oral contraceptives. Birth control pills, which are also comprised of synthetic hormones, have been linked to cervical and breast cancers.)

If you are experiencing excessive menopausal symptoms, you may want to consider bioidentical hormone replacement therapy instead, which uses hormones that are molecularly identical to the ones your body produces and do not wreak havoc on your system. This is a much safer alternative.

• Avoid BPA, phthalates and other xenoestrogens. These are estrogen-like compounds that have been linked to increased breast cancer risk
• Make sure you're not iodine deficient, as there's compelling evidence linking iodine deficiency with certain forms of cancer. Dr. David Brownstein¹⁰, author of the book Iodine: Why You Need It, Why You Can't Live Without It, is a proponent of iodine for breast cancer. It actually has potent anticancer properties and has been shown to cause cell death in breast and thyroid cancer cells.

For more information, I recommend reading Dr. Brownstein's book. I have been researching iodine for some time ever since I interviewed Dr. Brownstein as I do believe that the bulk of what he states is spot on. However, I am not at all convinced that his dosage recommendations are correct. I believe they are too high.

• Avoid charring your meats. Charcoal or flame broiled meat is linked with increased breast cancer risk. Acrylamide—a carcinogen created when starchy foods are baked, roasted or fried—has been found to increase cancer risk as well.

carcinosarcoma-uterine

Thanx Jazzy and all you gals out there.  This site is the most helpful and positive that I've seen.  You all are hero's, and so very brave to endure all you do! For anyone new, Please donate your parts to Bio banks for research for this horrible cancer so we can improve our stats like so many other cancers. Ours is so much more rare and they need more to research. I was told mine is not genetic for my daughter's sake.  I was diagnosed 22 Dec. 2017, everything out 29th and 29th Jan. 6 mos. of carbo/taxol. stage 1 Carcinosarcoma.  I will do all I can to fight this.  I want to attend my daughter's wedding and can hope to be a "Grandma" even for a little while. I had just turned 57 and working part time. Prayers and God bless you all.

txtrisha55

Imlaurietoo said:

Thanks!

Thank you so much for replying, Cindi! Your words are very encouraging! I have an appointment on Monday and I’m going to insist on a full body scan. I haven’t had one since Nov 2015. I am going to talk to him about some of the treatments I see on here. I love my Dr but he needs to be a little more aggressive with me. I’m his youngest patient and he needs to keep me around for my kids ☺️ If I can be a help to anyone else, I’d like to do that too. I’m tired of pretending I’m not apart of the MMMT community and instead embrace it and work to make lives better for other women. I can’t find any research groups amd there doesn’t seem to be much public knowledge about us. Dont we need advocates too? Any ideas would be appreciated. I don’t know where to start.

Congrats on beating breast

Congrats on beating breast cancer.  Beating this one is doable too!.  The ladies on this site are wonderful, caring and are here to support and help.  All you have to do is ask and they will share their own journeys.  But in short, be your own advocate, find a dr you can ask questions too and the big thing is they answer you.  If you need or want a second opinion, ask for one.  This site is a safe place, share your joys, good news, come to vent and cry. The ladies are here and will listen.  We have been there.  

I am 6 1/2 yr survivor of grade 3 MMMT Stage 3C1.  Tumor in Uterus was 1A but had 1 lymph node with 2 cancer cells in it so it was upgraded.  I had 6 chemo treatments and no radiation. Good Luck in your journey as no one but the One knows our expiration date.  trish

 

asamuels100

uterine carcinosarcoma

Hi everyone, I just joined. It is lovely to "meet" all of you. My mom (age 77) was diagnosed with uterine carcinosarcoma in Dec 2016. Stage 2. She had hysterectomy, radiation and 4 treatments of carbo/taxol. We learned yesterday that the cancer is back in one lymph node. Oncologist recommending more carbo/taxol. My mom does not want this as the side effects were brutal. Has anyone tried just one chamo regimen and had better side effects? And/or immunotherapy? We are scheduled to meet w oncologist on Friday so all information is really helpful. Thank you so much.