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Stage 4 carcinosarcoma of uterus (lung mets) still cancer free

jmsaussy
Posts: 7
Joined: Aug 2011

To all uterine cancer survivors and those undergoing treatment I will share my story. I have been hesitant because I wonder if someone with cancer ever really feels "out of the woods," but here goes:

Age 42 (2007), three teenage girls, divorced. Had some abnormal bleeding that I thought was a birth control pill mix up, but diagnosed with and endometrial polyp. D and C revealed a polyp but "a few questionable sarcoma cells." I am a physician and asked my gyn "what the hell?" He sent the tissue to CA for histochemical staining and it came back NEGATIVE for cancer. Six weeks later, I began bleeding again and went for my post op check up thinking it was my normal period only to find out the mass had re-grown. I was living in post Katrina New Orleans and decided this was no place for cancer treatment and went to Dallas, where I had family and friends, taking my twin teenage daughters with me (this is where they relocated after Katrina and wanted to go back there). My older daughter was in her junior year and elected to stay in New Orleans.
I had an appointment on the following Tuesday but began bleeding heavily on Friday. Went to ED on Saturday feeling fine except for the bleeding. Admitted and burned with Monsel solution (a whole different story), but ultimately had an emergent hysterectomy on a Sunday night. The surgical oncologist basically said he thought I had an aggressive form of cancer with a poor prognosis. You can only imagine how well that went over! Pathology came back as carcinosarcoma (MMMT) of uterus with invasion levels just mm deeper than they would have liked and while no lymph node involvement they could detect, I had lymphovascular involvement. So, now they recommended 27 whole pelvic radiation treatments with two of those being high dose vaginal cuff treatments (lovely). Finished in November, commuting to New Orleans throughout. December's screening CT showed nodules in my lungs. Repeat in January showed they had grown one millimeter! My CT surgeon was a godsend and insisted they come out. January 21, 2008 I had a bilateral lung resection and 2 0f 8 nodules were positive for rhabdomyosarcoma one of the mullerian tumor types that was chemo sensitive. I was off to Sloan Kettering where a fabulous sarcoma specialist said I needed aggressive chemo starting NOW ( I had not been able to get a good answer to my chemo question before this and was relieved that someone would just weigh in). Back to Dallas for 6 rounds (3 inpatient days every 21 days) of chemotherapy. I had a port placed and continued to work in New Orleans by commuting and telework from my bed at home and on the chemo ward. I don't have to tell any of you that it was six months of hell but with the support of my friends, family and co-workers, I finished in June of 2008. I moved back to New Orleans after Hurricane Gustav (september 2008) as my work required me to be in the City and I believed my twins needed to be near their father with the less than favorable prognosis.
Ladies, I have/had Stage 4 uterine sarcoma and I have never felt better almost 4 years later. The prognosis was dismal as you know, but I just prayed for a little more time with my girls and kept as positive an attitude as I could (some days it was easier than others and still is). I continue to be vigilant with my check-ups although the doctors want to back off the every six month CT's which makes me nervous, but I have to do it sometime.
For all of you out there that may have this please know the news is not all bad. It is a mind-body challenge every day, but it can be done. I have never shared my story so not sure where to go from here. I know women's cancers are a difficult thing to discuss in a public forum but I believe we need to stick together, speak up and demystify them. There are definitely side effects that change your life but they are manageable and there is power in knowledge and cohesiveness and speaking up and out.....J

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Glad you shared your story. I know it gives me hope. You are one tough cookie. Sorry for your diagnosis but am so glad you joined the group.

Also, glad for a fellow New Orleanian. I was raised there. My heart never left although I live in Texas now. Have to go home every once in a while to get a good PO-Boy on Leidenheimer French bread.
I know others will benefit from your story of hope.

Fayard's picture
Fayard
Posts: 366
Joined: May 2011

Your story is incredible.
You are a true warrior!
I was diagnosed with stage 2, grade 3, clear cell adenocarcinoma.
I just finished 6 months of chemo. I only needed chemo and hysterectomy, no radiation.

I like in Gulfport, MS for about 12 years. I was there during Katrina.
I move to San Diego in 2007.
I used to visit New Orleans a lot!

Good luck to you and stay healthy.
Thank you for sharing your story@

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Glad you can share your story and happy you can truly say you're feeling great, at stage 4. I have the same cancer, MMMT (stage 3c) and know it's very aggressive, but I keep positive and remind myself I can endure. I have millions of reason to live, as this is repeated in my mind daily. Sorta like a little carrot out in front forcing me to keep running forward.

Stories like yours remind us we all have a chance at life!!

Best of luck to you and your family~
Jan

P.S. Can you share any things you've changed in your life, such as eating, exercising, mind-altering therapies to get you to this point in your life?

jmsaussy
Posts: 7
Joined: Aug 2011

Jan-

would love to tell you that I completely altered my life, but after a while, I decided to just live! I tried to slow down at work, quit working nights as an ED doc (although I am being asked to do three at end of October which I will do, but really don't want to). I exercise regularly and actually was up to 8 miles running a year after my last chemo. I am back to about 3 miles...ughhh...I eat organic things that might have hormones in them (chicken, milk, eggs, half n half) and when i think about it try organic lettuce etc...i am not a big sugar eater, but use raw sugar in my coffee, tea, etc...although I do drink soft drinks, I try to limit this and stick to water so I can avoid too many artificial sweetners. I still drink alcohol and try to avoid soy (as natural estrogen) although I love edamme and cheat periodically. I have had friends who chose radically dietary changes and gave up things they loved and still did not have the outcome they were seeking and I want to enjoy life...all of it!
Lots of counseling about this diagnosis, but it was two years after Katrina so I was still reeling from that so I spent lots of time talking about grief and fear.
One of the saving graces was keeping myself focused on something other than this crazy diagnosis. I did not want to become defined by cancer, but rather use the experience to appreciate the smallest joys in life. It has made me a better person and a way better doctor. It is always in my mind especially around the sixth month (need a CT to check and see if it is back) and the anniversary which is August 27th (four years). I am now on yearly screening (last CT was December) and it freaks me out a bit. I can not keep getting CT's every 6 months for the rest of my life however, so I am just dealing with the anxiety. Have you made any big changes? When was your diagnosis?
jullette

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Sounds like you've made some changes, but not radical which I think is good overall. I've done the organic foods (dirty dozen list), no meat or dairy due to hormones, no white flour, added lots of turmeric and cinnamon spice, protein (whey) twice per day, watching my sugar intake as my downfall is few hard candies per day, 4 cups of green tea per day. To name a few~ I was always an exerciser prior to cancer, so I continued but had to adjust NO RUNNING to WALKING due to sciatica pain from my treatments. I exercise approx 1 hr per day plus 1/2 hr of yoga. I've learned to not work like a crazy woman and chose to not delve back into my corp job...let hubbie be the big breadwinner now.

I go to a group therapy class once per week and talk with other women who are enduring cancer in their lives. This group has been my support from day one and gives me strength to endure on.

I as well try to not become defined by cancer by getting into life with my daughter and husband and close friends. I have a wonderful support system which makes my journey easier, as many are doing it alone...sad!

If you link next to my name you'll find my cancer story. I've been NED for 2 years from last treatment and hope to continue on this wonderful path.

I look at life as a journey that cannot be redone, therefore, I try to enjoy each and every moment of each and every day.

Best to you!
Jan

Fayard's picture
Fayard
Posts: 366
Joined: May 2011

Jan,

What kind of protein do use drink/eat?
I cannot find any either without sugar of some kind of lactose or milk product in it.

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I was diagnosed with MMMT in July. It started with four months of heavy bleeding that ultimately landed me in the hospital. After a full hysterectomy I received my diagnosis, Stage 2, High grade with 17% invasion into the cervix and lymphovascular involvement. Treatment plan is three rounds of chemo followed by several rounds of pelvic radiation (including internal) then three more rounds of chemo. I too will be receiving chemo three days in a row but as an outpatient. Ifosfamide Day 1,2 & 3, Taxol on Day one, every twenty-one days. I start chemo on August 31st.

If you don’t mind me asking, what chemo cocktail did you receive?

Thanks so much for sharing.
Cindy

jmsaussy
Posts: 7
Joined: Aug 2011

cindy-

chemo brain has taken over but I believe it was etoposide, ifosfamide and carboplatin...I also took a kidney protecting drug with the carboplatin as very nephrotoxic. It was 3 days in patient followed by a neupogen injection on the morning after...I had six rounds because the oncologist at sloan kettering said that was what adults could handle together (kids with the rhadbomyosarcoma expression I had in my lungs get 12!) Anyway, 27 treatments of whole pelvic radiation with 2 of those being high dose vaginal cuff treatments after my hysterectomy. I will check with my sarcoma doc to make sure those are the correct three drugs. Where are you?
Jullette

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Thank you for sharing your story. While not the same dx as you, I have UPSC, another aggressive cancer. I have had one recurrence and NED since Nov. 2010. I also feel good - exercise about 1 hour daily (3 miles on treadmill and 500 calories!!). I agree with your philosophy of life. I appreciate your optimistic attitude and hope you share with us.

My husband and I lived in NOLA in 60's - college at Loyola - and we just returned for first time this May for JassFest - totally awesome - perfect weather and great time reexploring our old haunts.

Question: What's ED doc? emergency room physician? Did you keep your port? If not, what made you decide to remove and when? I still have mine.

Many blessings to you.

Mary Ann

jmsaussy
Posts: 7
Joined: Aug 2011

mary ann-

yes emergency medicine physician...trained at Charity...work at "new" charity hospital trauma center called University Hospital or LSU Interim...moving to DC area this fall though after 30 years in NO...engaged to an awesome guy who lives and works here so big changes
I had my port removed the fall after chemo...I believe 2008 because I did not need it anymore as I was told even if recurrence, chemo not an option...so, I had a friend surgeon take it out...it was no big deal and but for the scar, no issues....it seems almost like a badge that I show only a few people...mainly other cancer patients that I see in my ED to let them know I really do get it and how bad or scared they might be feeling at that moment...what is UPSC? Unknown primary?
J

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

UPSC is Uterine papillary serous carcinoma, a rare and aggressive grade 3 cancer which tends to act like ovarian. Many posters here have this type. Mine is endometrial. I was originally staged at 3a (part of me thinks I may have been stage 4 from beginning after looking at PET scans) and had recurrence in supraclavicular lymph nodes last year - one year post completion of original tx (consisted of 6 rounds carboplatin/taxol - no radiation). I did have chemo (Carboplatin) and radiation for 7 weeks for lymph nodes.

UPSC is noted for it's tendency to recur. I have kept port for that reason. I get raves every time its accessed but part of me feels like I'm a pessimist for keeping it. The other part is the realist who does not want to have unnecessary surgery to replace it if needed again.

Why can't you have chemo again? So many here get chemo when they recur. Another question: you mention continued CT scans. Do your docs prefer them over PET/CT? My doc prefers PET/CT. My surveillence routine is CA125 and exam every 3 months, PET/CT only if indicated. No routine scans.

It's nice to have a medical professional in our ranks. Mary Ann

lilgalfromin
Posts: 2
Joined: Aug 2011

my mom n law had a total complete hysterectomy 38 years ago due to endometriosis. Now, 38 years later she started bleeding, went to GYN, did biopsy, told it was malignant, she went today and met with ONC/GYN surgeon and also got her CT results. not good news. multiple pelvic masses.. one is causing a blockage of her kidney. They saw a small nodule on lung, a small mass on colon, mass on bone.. Dr said surgery wasnt really an option because she would lose too much blood or can go into cardiac arrest. She asked him point blank how long does she have to live, he said he didnt know. So to me, thats better than given a time frame.

I am very scared for her and my family. My kids are very young and are too young to lose their grandma. Its just devastating. i dont want to lose her and I dont want her to suffer. Can someone please tell me anyone who has this same situation. Dr of course said she was a rare case. They think a flap of skin was left behind and her estrogen taken for 30 years fed into the skin/cells left behind and thats where the cancer came from. if thats the case, I say everyone sue these estrogen companies. They are killing people. Please someone help me come to terms with all of this. are we talking she will be gone within a year, two years??

RoseyR
Posts: 469
Joined: Feb 2011

Juliette,

As I have the same kind of uterine cancer as you (although caught in Stage IB), it was inspiring and heartening to read your story.

I JUST FINISHED nine months of treatment (three rounds of taxo/carol, 25 external pelvic radiation treatments, and three more sessions of chemo on Monday and am feeling suprisingly good. (Had few side effects during treatment except for need to postpone chemo number 5 twice due to low blood counts; needed a transfusion.)

I am most interested now in the chemo regimen prescribed to you--which sounds more rigorous (and hard to take) than carbo-taxol. Suspect it was prescribed because your stage was so advanced. (If you can find out if this was the case, it would be useful to a lot of us with carcinosarcoma (used to be called MMMT).

It's also fascinating to hear that you watch what you eat, but not obsessively, allowing yourself some treats from time to time.
How much are you exercising? Getting oxygen into one's system, I often read, is one of the best ways to prevent recurrence.

Congratulations on your success so far in battling this difficult cancer! And for sharing this real nugget of hope for the rest of us!

Warmly,
Rosey

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

I know the ifosfamide is hard on the bladder. They will be giving me Mesna interveneously to protect it and taking urine samples prior to every treatment to monitor it. They give Mesna at the start of every treatment and four hours into the treatment, plus a Mesna pill to take once I get home. If I'm extra good ;o) and drink tons of water, they said I could forgo the second interveneous dose and take the second dose in pill form which would cut off an hour or two on the second and third day of treatment.

You're one of the few people that I've come across with this type of cancer that has done a three day in a row regime of chemo. It's a little scary how inconsistent the treatments are for this type of cancer.

I live in the Twin Cities.
Cindy

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Your story is a wonderful inspiration! Thanks so much for sharing. We do seem to have a NOLA area connection going here - in the early 70s, I lived in Gulfport/Biloxi area with frequent visits to NO.

My cancer came to light following an appendectomy in Nov '07. Post-surgery (debulking) diagnosis (Jan '08) was "High grade (Grade 3) endometrial carcinoma, mixed mullerian type, predominantly uterine papillary serous carcinoma, with clear cell and endometroid components," Stage IVb. No primary identified, no cancer within the uterus, but thought most likely endometrial in origin vs. possible ovarian. Recurrence diagnosed in para aorta nodes (2) in Oct '09 treated during 2010 with Gemzar. They reappear every time I stop chemo, and just recently had radiation for new site in axillary and supraclavicular nodes. Life's so much better not on chemo and so I am about to investigate next step options. Your results certainly speak well for effective chemo treatment at the get-go. That you were able to get this and manage the harsh effects is wonderful and I am so glad life is unfolding well for you!
Annie

RoseyR
Posts: 469
Joined: Feb 2011

Dear Annie,

Have been following your posts for some time with admiration. Love your courage, resilience, and buoyancy given how much treatment you've endured.

What I never realized--though I knew your diagnosis was complex--was that there was some tissue indicating MMMT (now known more often as carcinosarcoma) in your initial tumor.

What's still unclear to me is WHERE the site was of your original tumor as you say it wasn't the uterus. (Could you clarify?)

Would also like to know what your initial prescribed chemo regimen was for this combination of serous, clear cell, and MMMT elements. (And isn't it fairly rare to have a tumor with so many different kinds of cells in it? Perhaps not; perhaps you were being treated at a really sophisticated center that could make those careful pathological distinctions. )

Have just finished nine months of treatment for MMMT uterine (caught at stage IB) and am feeling pretty good. (Had my sixth treatment of taxol/carbo just this past Monday after 25 IMRT pelvic radiation sessions.)

And though relieved that first nine months of treatment are over, know I need to be vigilant about recurrence.

So if you could provide a few of the details I've asked for (sorry to ask you to recall all this!), it would help. Am esp interested in why Sloan Kettering put you not on carbo/taxol but a much more demanding regime; suspect it was your Stage 3C, if I have that correct without my reading glasses?

You're an inspiration to all of us.

Warmly,
Rosey

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Rosey, Thank you for your kind words! And you pose some good questions - which I also intend to pose to my Drs. Both Med Onc and Gyn Onc referred to cancer as 'papillary serous' from the get-go and I received the usual carbo/taxol, 6 rounds. I just assumed the dominant cell type determined treatment or never questioned the choice. It's been several years now and I am treated by a different gyn onc necessitated by insurance changes. However, I am working towards revisiting with orig gyn onc and clarifying some details.

Also, as part of this process I have been reviewing my extensive records and without chemo brain, I've read all reports in more detail. I had never seen my earliest records from when I had some significant bleeding issues two years prior to this diagnosis. I underwent a D&C at that time with numerous polyps found. I have concerns about the technique described for this procedure in which the Gyn initially infused a large volume of saline into the uterus but when only about two-thirds was returned, concern for potential overhydration led him to proceed to use forceps to remove a portion of the extensive number of polyps, the remainder were evaluated during debulking. No neoplastic disease was identified. The opinion at time of debulking surgery was that primary must have been 'missed' during D&C. My concern is that the cells were forced into the peritoneal cavity via the fluid that failed to return and began to spread from there. There was no cancer found in uterus during debulking but growths on ovaries appeared to be metastatic not primary, hence the presumed 'endometrial origin' of cancer. I believe an 'unremarkable' leiomyoma was also found. I'm not sure if clarifying these issues will make any difference, but 'inquiring minds' like to know.

I'm glad yours was caught early and hope your extensive treatment will result in a cure!
Annie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hi Annie,

My doc decided which chemo based on the functional profile/assay done on my tissue. He showed it to me. Carboplatin and taxol (the usual meds) were the most effective with my tissue. Hopefully docs are using this test to determine rather than some boilerplate prescription. Check this - my file has the report which included a variety of chemos and their rate of effectiveness.

Good luck with you appointment. Mary Ann

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Thanks Mary Ann. I think fresh tissue may be required to do assay. I don't think current gyn onc does this butb I'll ask. I see him first anyhow as I want to get an updated ct/pet and ca125. I had a biopsy back in June but don't expect that tissue can be used now. I am also requesting another gyn onc to review my file to see if he will see me for eval/another opinion. I guess all this will keep me out of trouble for a while :-) Staying positive!
Glad all continues to go well for you!
Annie

RoseyR
Posts: 469
Joined: Feb 2011

So appreciative of these clarifications and realize why your question your D and C procedure; in Knockout, Suzanne Somers interviews some alternative oncologists who open our eyes to possible dangers in these initial procedures. Even the WAY we are admiistered anesthesia, according to one of them, can make mets more likely or less likely. Yet so many treatment centers are wed to the traditional protocols and if we question them, we are met with shrugs.

You are such a beautiful woman both in spirit and appearance (wish I knew how to send a photo to this site but even if I did feel I need to be less public for a while; don't want anyone from work to be lurking on this site but not sure if I need to worry about that; suppose it's pretty secure, or not?) that I instinctively think you 're going to be around for quite a while, Annie.

Hope you have a good support system for you surely deserve it!

xo,
Rosey

evertheoptimist
Posts: 140
Joined: Jan 2011

thanks for sharing your story.

As a relatively new member of the cancer community with a very serious diagnostics, I find your post very encouraging. My diagnosis is UPSC stage 4B. Finished front line 6 cycle (18 weeks) chemo in May. NED against heavy odds. Hope to stay NED for a long time.

I am very much of an optimist, but at the same time a realist. As a trained statistician, I know the odds are terribly against me, but at the same time, there are statistical outliers, and I am trying my best to be one of them. I already beat the odds big time just getting into remission so handily considering where I started.

I hope to be able to share a similar story as yours a few years down the road. But, at the same time, I am eerily accepting of whatever may happen. Sometimes, I wonder if I skipped all the intermediate stages of "mourning" and went straight to the acceptance stage..... The first reaction after I learned my diagnosis was actually a profound sense of gratitude that it's me, not my husband or kids and also it did not happen earlier that would have affected my kids acutely (they are 18 and 20 now). There are so many ways it could have been much worse, and I am grateful that even with all this, I was given a winning hand.

I don't fear death for myself, and my kids are by now all very well adjusted young adults, both of them doing terrifically well with everything going for them. My only source of anguish is my husband who will be left behind. If anything, the desire to be there for him is the best motivator for me to do everything within my power to be a long term survivor.

maryv1119
Posts: 37
Joined: Jun 2011

Thanks so much for your story, it encouraged me greatly.

Sept. 2010, My Dx was endometrial cancer grade 3 stage 3CII, and a uterine sarcoma with mets to the vagina. I was 40 when i had my hysto. I had 5 weeks of daily pelvic rad, with 5 treatments of low dose Cisplatin weekly. Then I had 3 internal rad treatments and 6 treatments or carbo/taxol - last of which was May 12 2011.

I'm not sure exactly what type of cancer I have (UPSC - MMMT) I've asked my Dr and his RN to explain it to me - they immediately change the subject. I'm not depressed or fatalistic, so I don't understand why they won't explain in detail what I have and what my prognosis is - I know it isn't great.

Anyway, I also feel like cancer has made me a better person. I've grown closer to my family, to God, and have a renewed sense of joy for each day that I'm given. I may have cancer, but cancer does NOT have me.

Good luck to you and everyone here.
Mary V.
Joliet IL

evertheoptimist
Posts: 140
Joined: Jan 2011

mary,

you can get hold of the pathology report. It will tell you what type.

I think it's well worthwhile reading it and find out what type yours is. For instance, if it is UPSC (like mine), it behaves very much like ovarian cancer. In such a case, for you to stay on top of the latest development in the ovarian cancer research will make you an empowered and informed advocate for yourself. UPSC is so rare, there isn't really much independent research on this, and most of the research on a vast majority of the uterine cancer does not really apply to us.

Good luck

terijacobs
Posts: 1
Joined: Dec 2012

Hi Jmsaussy- hope you are doing well. Who was the oncologist at Sloane if you don't mind my asking. Also, do you know anything about Radiofrequency ablation for lung mets? Thanks

Roena's picture
Roena
Posts: 20
Joined: Dec 2012

New to this site and still wandering around when I found your incredibly uplifting story.  I'm still wondering where this all came from - no discomfort or bleeding, just bloating that came and went.  Having been a support person for a friend who went through a siege with breast cancer, I lost my fear of the dreaded disease that claimed almost all my family on my mother's side.  I KNOW it can be beaten back! 

Thank you, thank you, thank you for coming forth with your experience.  Live long and prosper!

Sisters three's picture
Sisters three
Posts: 159
Joined: Nov 2012

I am hoping my picture of  Spock came through. A Trekkie fan? can it be????? 

Vivien_NYC
Posts: 2
Joined: Jun 2014

Jmsaussy: would you mind sharing which doctors at Memorial Sloan Kettering you saw? I am urgently trying to relocate my mom from overseas for the treatment in the US. - Vivien

Vivien_NYC
Posts: 2
Joined: Jun 2014

Does anyone have recommendations for Uterus Carninosarcoma/MMMT doctors? I got some names at Memorial Sloan Kettering. What other hospitals/doctors are highly rated (ideally in New York, but if not, elsewhere in the US)?

Like many of you here, my mom was diagnosed with MMMT few months ago. She is a non-US citizen and getting her treatments outside the US. I am thinking about getting her treated in the US to get her the best care (though issues such as costs, etc, remain).

 

 

 

Teamkelly's picture
Teamkelly
Posts: 63
Joined: Sep 2012

My sister in law saw Dr. Hyman. He sits on an international board fab out uterine carcinomasarcoma. He confirmed that the treatment she was going to get in California was the same treatment they used at SK.  Hope this helps. By the way I went with her and really liked him.

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