Confused about my options with Carcinosarcoma

Have the chemo & radiation treatments
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.

I have stage 3c carcinomasarcoma.
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.

hislilsongbird said:

from what ive read...
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

If you've ever seen
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?

hislilsongbird said:

from what ive read...
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

A cautionary note, Songbird:
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

hislilsongbird said:

Thank you
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

Songbird
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

hislilsongbird said:

open
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

Agree with Susan!

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

I was just diagnosed after a laparoscopic hysterectomy...
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.