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Confused about my options with Carcinosarcoma

hislilsongbird
Posts: 5
Joined: Jun 2012

I am a bit confused about my options. I was diagnosed 1a stage 3 aggression carcinosarcoma. within 2 weeks of diagnosis, I had a complete hysterectomy, lymphnodes removed, ovaries, everything gone. No cancer found anywhere but the uterine wall where there was a tumor (which I found odd that the CT scan never picked up, it was the size of a lemon). I have talked with 3 different Dr's, whom they have put my case to their "boards" for discussion. Apparently this form of cancer is VERY rare and very aggressive. One of the Dr's said he looked it up and there are only just over 400 active cases in the united states. I have since had a CT scan of my lungs, which came back clean, and a port put in. My concern is the chemo, they want me to have 6 rounds and 2 rounds of radiation. I have been researching like a mad woman about this form of cancer, I cant find much on it, but the general thread i seem to find is the wait and watch. My concern is that they dont seem to have a way to test for it to see if it has spread as it doesnt show up in blood work. I am at a crossroads as to weather to go with the chemo, which I am not fond of that idea, or to wait it out, and change my whole eating and exercise lifestyle. Anyone else out there with the same form of cancer I have, and any suggestions?

Michaelynn
Posts: 71
Joined: Apr 2010

I have Uterine Papillary Serous Carcinoma (UPSC) stage 1A grade 3 also very aggressive cancer. I had 6 carbo/taxol chemo treatments and 3 internal vaginal cuff radiation treatments. I am almost 2 years out with no evidence of disease (NED). My doctor told me he needed to hit it with everything he had because if it comes back he will not be able to cure it. Why take the chance of waiting it out when it can mean the difference between life and death. Don't give it a chance to grow and spread now is the best time to catch it and kill it before it starts growing somewhere else. Changing your eating and diet might help but it is not a sure proof remedy and most people find it hard to stick to a stricter diet for a long period of time. I wish you luck as you face this difficult decision. Only you know whats best for you but I am sure other survivors will respond and also suggest doing the chemo and radiation. Its your best hope at this point especially with aggressive cancer.

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

It's hard to know what to do. Like Michaelynn, I have UPSC. I had chemo but not abdominal radiation (my doc's recommendation) and I've had recurrences - first was in the neck. Is it due to not doing abdominal radiation? maybe, maybe not.

Cancer is a strange animal - unpredictable.

You can check the NCCN guidelines for your type of cancer and see what the protocol is. I think it is good to gather info and get your doc's recommendation and make a decision that you are comfortable with. There are surely no guarantees.

I pray for you as you continue on. Blessings, Mary Ann

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Welcome to the discussion board although i am sorry you find it necessary to be here.

If you enter mmmt or carcinosarcoma into search field for the Uterine discussion board -- it's at right above list of discussions - you should get a number of threads on this cancer. Carcinosarcoma is also called Malignant Mixed Mullerian Tumor, MMMT for short. There are a number of fairly regular posters who have this type of cancer and if you also put this in your discussion title you will most likely hear from them. I have UPSC another of the rare Type 2 uterine cancers. All Type 2 uterine cancers are Grade 3 or 4, aggressive cancers. But do the search and you will find discussions of the treatments they have done. My UPSC can be monitored by the ovarian cancer marker CA 125 which is helpful but not all uterine cancers show any notable change regardless of level of disease. It is great that your cancer --if you had to have it :( -- was found at an early stage. Mine was not diagnosed until I was Stage IVB, not so good.
I hope you will get some insight from the discussions to help you with your decision making.
Annie

debrajo's picture
debrajo
Posts: 772
Joined: Sep 2011

I'm with Michaelyn! I have UPSC 1a grade c. Besides the radical hysterectomy and wash I took six rounds of Taxol/Carboplatin and 5 rounds of bracialtherpy(internal radiation). My dr.'s at M.D. Anderson in Houston wanted to hit it hard and fast just like it was stage 4 ovarian cancer. Why wait and see? Do it now, please!!! I am 25 months out of chemo with NO recurrence(Thank you Sweet Jesus!). Don't wait and see..get it over with and get on with living! Best, Debrajo

hislilsongbird
Posts: 5
Joined: Jun 2012

My concern is that from what i have researched has been this:
1. 80% of Dr's will not take Chemo themselves
2. If it comes back anytime soon after Chemo, my body will not have any defense, because my immune system will be severely compromised from the chemo. If the nurses administrating the chemo cant have it touch their skin because it will eat through it, makes me incredibly nervous for it to enter my veins, considering all the meds i'm already allergic too(including steroids that they have to give me apparently)
3. People who do not take Chemo live 4 times longer.
Now these are just what I have read about. I am just so incredibly nervous about all this. How have you all dealt with the nerves??..and thank you for all the replies :)

Michaelynn
Posts: 71
Joined: Apr 2010

if you've ever seen someone die from cancer you would do the chemo therapy. Compared to what you endure in the months/weeks that you are suffering before you die chemo is a walk in the park. Chemo is your only chance of a cure. Granted it does not stop cancer from coming back in some people. But for others it is a god send. I would rather do chemo numerous times then to "wait" and find out I am not one of the lucky ones that got the cure.
Once you have a re-occurrence there is no "cure" and you jump to stage 4. You are not the only person to ever have reactions when on chemo a lot of us do but the doctors will get you through it. Also it doesn't take long for your blood counts to rise to normal once you are off chemo for a couple of months. Your rolling the dice by not doing the chemo and with aggressive cancer no matter what the stage the odds will be more in your favor if you do the chemo. This decision is ultimately yours to make but it does effect your whole family spouse/children. What would you do if one of your loved ones came down with cancer wouldn't you want them to do everything possible to prolong there time with you? How can you ask them not to feel the same about your life?

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

A cautionary note, Songbird: be very critical in the information found on the internet. Ther is a great deal of misinformation out there and some of stats you have found are of concern as to their source. Yes, chemo nurses do gown and glove to administer chemo agents and some can be problematic if with skin contact. However, these nurses are handling many different chemo agents, day after day, and they must protect themselves from potential exposure. An excellent book I recommend is Anti-Cancer : A New Way of Life by David Servan-Schreiber, MD. He has extensively researched combining western traditional cancer treatment with complementary therapies. He lived 19 years beyond his 6-month prognosis following recurrence of a highly aggressive brain cancer.

Yes it is very difficult to have to make decisions on best options for ourselves and it is good to question recommendations. Second opinions can be good as well. I have just recently started on my 4th course of chemo, 1st was in '93. My doctor left the decision of when to begin up to me as he is very conservative and has great concern for optimizing both quality and quantity of life.

Sending positive thoughts your way that you are able to make the best decision for YOU, that will be the one you are most comfortable with and can feel as confident as possible that it is the best option for optimizing your life in the long run.
Annie

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

I was dx in April 2011 complete radical hysterectomy with 10 nodes removed. It was found in 1 node. I had 6 rounds of carbo/taxol, no radiation. I just had my checkup and the dr said I am doing ok. NED, I just had a ct scan today and witing on the results. Personally I would get the chemo. The dr told me that she did not want to radiate the whole pelvic area becasuse once an area is radiated it cannot be again. Sorry you had to join our group but there is a lot of information and a lot of women on this site that have this cancer. good luck and prayers which ever road you choose. In Dallas, TX trish.

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

I too have this kind of cancer...stage 2 grade 3. This is not your normal run of the mill cancer...this stuff is nasty. Because of its aggressiveness you want to hit this with everything you've got up front. I did six rounds of chemo (Ifosfamide/Taxol) 25 rounds of pelvic radiation and 3 rounds of brachytherapy (internal radiation). If your doctor is even giving you the option of not doing any followup treatment after surgery, I would suggest a second opinion. Chemo really isn't that bad (you will lose your hair). I worked full time during all my treatments and besides chemo days, I only missed one day of work due to a super bad cold. Many people follow up treatment with changes in diet and lifestyle.

I am currently three months out of treatment and so far, so good.

Having said all of that, ultimately its your decision and you have to do what you feel is best for you, but you asked for opinions and mine is to utilize all the treatment options available to you right at the start.

Take care,
Cindy

hislilsongbird
Posts: 5
Joined: Jun 2012

Thank you all for your help! I am going through with having Chemo. I decided I would rather be safe than sorry, I am recently engaged and want to make sure I am around a long time :)

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

I as well have MMMMT, stage 3C, diagnosed Feb 09, had 6 rounds carbo/taxol, sandwiched with 33 rounds external pelvic radiation (cancer found in only 1 lymph node in pelvic area). Can't emphasize how aggressive this cancer is and as my doc told me at beginning....you don't want to play around, lets get in and be aggressive with treatments to kill this MMMT.

As well, suggested I not do lots of researching on internet as the news isn't updated. People are living 3+ years post treatments, as I'm 3+ years NED. Per a quote on my docs wall -- I am a statistic of ONE~ I simply don't read the statistics as no one can truly predict our life line....why go there~

You are wise to at least have chemo, but don't close the door on radiation (internal or external). The side affects, long-term, are there, but for me very minor.

Cancer is not a sentence, it's a word.....go get 'em girl~!!!
Jan

debrajo's picture
debrajo
Posts: 772
Joined: Sep 2011

Way to GO! Now fight for all your worth and, God willing, this will be the ONLY time you will have to do it! Best, debrajo

PS Stay away from Dr. Google...it will just give you a headache and depress the fire out of you!

hislilsongbird
Posts: 5
Joined: Jun 2012

My first Chemo treatment is scheduled for Thursday, July 5th. Any suggestions on nutrition and any inside do and donts? Thank you :)
*is staying away from the Dr. Google* lol

Susanna23
Posts: 66
Joined: Dec 2010

Hi Songbird
I just picked up your thread and wanted to offer some further encouragement. I was diagnosed with Stage Ia carcinosarcoma in November 2010 after total hysterectomy, lymph node dissection. I had six rounds of carboplatin and taxol, but no radiotherapy. My oncologist said that she thought the risk of it coming back locally was lower than of it coming back to liver or lungs and therefore it was better to treat the whole body and leave the radiotherapy for if it did come back in the pelvis. So far I have been fine - been through five check ups so far and now referred back to the local hospital and on four monthly checks. I did not have any side effects from chemo, apart from hair loss. During treatment, I didn't take any supplements but since then I've taken vitamin D and am prescribed Iscador (mistletoe) by my complementary care doctor. I've been following the Anti-Cancer book that others have recommended closely since before chemo. I do understand concerns about chemo undermining immunity - the mistletoe and vitamin D boost immunity, however.
Yes, when my path report came back I googled and was horrified to see the stats! Since findin this site and another I visit I've learned that these are out of date and there are plenty of carcinosarcoma survivors around.
I wish you all the best with your treatment
Do keep in touch
Susan (London)

RoseyR
Posts: 464
Joined: Feb 2011

Diagnosed with Stage 1B MMMT in September, 2010, I am two years out now and feeling great.

Finished 6 rounds of taxol/carbo and 25 external pelvic radiation treatments in August of 2011 and had NO side effects from any of it except lost hair. No big deal.

I highly recommend you do the treatments but to protect yourself against side effects, yes, I'd see an integrative doctor and get prescriptions for the following:

Mistletoe OR AHCC (mushroom complex routinely given to chemo patients in Japan). Not cheap, though. Take two three times a day between meals during treatment. Or at least some kind of mushroom supplement such as Stamets 7.

Fish oil by Pharmax. (2 tsps a day)

Vitamin D3 (three to four drops a day of Liqui-D, available online; the drops are much better than capsules). Your blood levels of D should be between 50 and 80, ideally around 60-70. Any lower and you are seriously deficient. D helps fight cancer spread.

Each morning before breakfast: one scoop of ProGreens in a glass of water. Helps protect your intestinal system against chemo and radiation. Helps prevent constipation, a serious problem during chemo. And fortifies with all kinds of minerals, algaes, and chlorella, and so on.

I would change my diet to eliminate sugar in any form (except berries, up to half a cup a day) and white bread, white pasta, etc. Yes, buy and read Screiber's book Anti-Cancer: a very inspiring and scientific study of nutrition and cancer.

I also took 600 milligrams of Vitamin E succinate a day to protect against neuropathy (along with two multivitamins, two capsules a day of Formula 950, available online made by PURE). After chemo, raise to two of them three times a day to restore antioxidants. But during chemo and radiation, only two a day.

During radiation I also was prescribed 90 mgs a day of zinc chelate to protect my intestines. Gradually reduce after radation, however, as that's too high a dose on a longterm basis. I had NO diahrrhea during radiation as a result.

All these supplements can be deducted from your taxes in April IF you get an integrative doctor to prescribe them.

I was really scared of chemo before I started doing research on how to protect myself against it without getting in the way of its efficacy. You might also want to test your B12 levels by blood test, not only D, and be sure your B12 is at least 600 before starting chemo: if it's lower, you are deficient and more likely to develop neuropathy from the treatment.

Don't be surprised if your oncologists know nothing about all of this or don't want to hear about it. Their med education teachers next to nothing about nutrition and disease, alas.

Best,
Rosey

RoseyR
Posts: 464
Joined: Feb 2011

Please email me at top left of our screen and I will send you my private email address so that I can forward a more detailed description of what was prescribed for me during treatment.

Best,
Rosey

hislilsongbird
Posts: 5
Joined: Jun 2012

i emailed you my email rosey, am very interested in the vitamins and diet, thank you much!

trishmattjon
Posts: 3
Joined: Jul 2012

On July 2, 2012, my gyn got a phone call from the pathologist who examined the remnants of my hysterectomy, done June 14. He found traces of carcinosarcoma in this blob of matter that was removed, which gave me the appearance of a woman bet. 4-5 mos pregnant. Because I had a laparoscopic surgery, and there IS the possibility that pieces may have broken off, I was sent for immediate testing with an oncologist. CA-125 was normal, my CT scan of lymph nodes chest to pelvis were clear. Despite the fact that everything LOOKS normal, my oncologist has sent me for a battery of tests, my port goes in July 18, my chemos commence 7/19- six of them, one every three weeks. I am DETERMINED to keep my hair, so I have started taking 5000mcg biotin, hair/nail vitamins, and collagen; and am treating my top of my head with minoxodil. My chemo is carboplastin, which may cause hair thinning; but many do not have any reaction. This beats the heck out of the Taxol drug my oncologist wanted to give me. My Mom died of ovarian cancer, and she was emotionally shattered when she lost every hair on her head overnight, and it grew back like a newborn baby's, but grey. Mom's oncologist treated her with Taxol. Since I cannot afford the $16K for a cold cap rental, I will bring ice bags to put on my head so the chemo drugs will NOT be taken into my hair follicles, since the blood vessels will contract. What will become of me?? I don't know yet. I just know I will NOT go bald, I will NOT be held hostage, and I am going exactly nowhere. In the words of my 99-year-old Auntie, who just had a cancerous tumor taken from her intestines a few months ago--"I can't die yet! I have unfinished business!!" She is now living with her daughter, very normally- except for her colostomy bag. I am inspired by her courage and strength, and I, too have unfinished business at age 54. I will keep you posted.

trishmattjon
Posts: 3
Joined: Jul 2012

On July 2, 2012, my gyn got a phone call from the pathologist who examined the remnants of my hysterectomy, done June 14. He found traces of carcinosarcoma in this blob of matter that was removed, which gave me the appearance of a woman bet. 4-5 mos pregnant. Because I had a laparoscopic surgery, and there IS the possibility that pieces may have broken off, I was sent for immediate testing with an oncologist. CA-125 was normal, my CT scan of lymph nodes chest to pelvis were clear. Despite the fact that everything LOOKS normal, my oncologist has sent me for a battery of tests, my port goes in July 18, my chemos commence 7/19- six of them, one every three weeks. I am DETERMINED to keep my hair, so I have started taking 5000mcg biotin, hair/nail vitamins, and collagen; and am treating my top of my head with minoxodil. My chemo is carboplastin, which may cause hair thinning; but many do not have any reaction. This beats the heck out of the Taxol drug my oncologist wanted to give me. My Mom died of ovarian cancer, and she was emotionally shattered when she lost every hair on her head overnight, and it grew back like a newborn baby's, but grey. Mom's oncologist treated her with Taxol. Since I cannot afford the $16K for a cold cap rental, I will bring ice bags to put on my head so the chemo drugs will NOT be taken into my hair follicles, since the blood vessels will contract. What will become of me?? I don't know yet. I just know I will NOT go bald, I will NOT be held hostage, and I am going exactly nowhere. In the words of my 99-year-old Auntie, who just had a cancerous tumor taken from her intestines a few months ago--"I can't die yet! I have unfinished business!!" She is now living with her daughter, very normally- except for her colostomy bag. I am inspired by her courage and strength, and I, too have unfinished business at age 54. I will keep you posted.

trishmattjon
Posts: 3
Joined: Jul 2012

On July 2, 2012, my gyn got a phone call from the pathologist who examined the remnants of my hysterectomy, done June 14. He found traces of carcinosarcoma in this blob of matter that was removed, which gave me the appearance of a woman bet. 4-5 mos pregnant. Because I had a laparoscopic surgery, and there IS the possibility that pieces may have broken off, I was sent for immediate testing with an oncologist. CA-125 was normal, my CT scan of lymph nodes chest to pelvis were clear. Despite the fact that everything LOOKS normal, my oncologist has sent me for a battery of tests, my port goes in July 18, my chemos commence 7/19- six of them, one every three weeks. I am DETERMINED to keep my hair, so I have started taking 5000mcg biotin, hair/nail vitamins, and collagen; and am treating my top of my head with minoxodil. My chemo is carboplastin, which may cause hair thinning; but many do not have any reaction. This beats the heck out of the Taxol drug my oncologist wanted to give me. My Mom died of ovarian cancer, and she was emotionally shattered when she lost every hair on her head overnight, and it grew back like a newborn baby's, but grey. Mom's oncologist treated her with Taxol. Since I cannot afford the $16K for a cold cap rental, I will bring ice bags to put on my head so the chemo drugs will NOT be taken into my hair follicles, since the blood vessels will contract. What will become of me?? I don't know yet. I just know I will NOT go bald, I will NOT be held hostage, and I am going exactly nowhere. In the words of my 99-year-old Auntie, who just had a cancerous tumor taken from her intestines a few months ago--"I can't die yet! I have unfinished business!!" She is now living with her daughter, very normally- except for her colostomy bag. I am inspired by her courage and strength, and I, too have unfinished business at age 54. I will keep you posted.

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

Trish,

With your attitude and determination, I am confident you will keep your hair!! Best wishes with treatment.

Mary Ann

HellieC
Posts: 442
Joined: Nov 2010

I think that your hair is going to stay put - I don't think it would dare to disobey a lady with such determination!
Seriously - carboplatin is not as bad as Taxol for hair loss, so I do hope that your efforts are rewarded and your hair doesn't thin too much.
I understand exactly what you mean by unfinished business. I am 54 too - and I have lots to do that cancer is not going to stop me doing! I think that a positive, determined attitude is so important in this batte.
Wishing you well with your treatment
Helen

Hannah1
Posts: 63
Joined: Jun 2012

I am also diagnosed with carcinosarcoma on 2004 had hysterectomy but before I went to do my chemo I had a second opinion at Stanford
and found out my diagnosis was endometrial carcinoma. I had 7 rounds of chemo, internal and external radiation. I was monitored for 5yrs
Now my oncology Dr. Told me to see my primary dr. From now on. I went to see a second opinion just for peace of mind but it's up to you
Keep that spirits up and good luck.

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