Just diagnosed - MMMT Uterine Cancer

Kathy:
Sorry that you had to
Kathy:

Sorry that you had to join this group and for your recent diagnosis. It seems that you already have a grasp on your treatment by being your own advocate! Keep that positive energy going! Look on some of the prior posts. You will find some great resources and information.

My best to you during your upcoming treatment.

Kathy

nempark said:

KATHY: Exactly one year ago I had the same at age 59
I was diagnosed in October 2009, surgery 2009, total hysterectomy.(59yrs) Mention to you doc about the momentum. Its a fat lining at the bottom of the belly, they also take that out because cells can be hiding in there (important).I was stage 1A Grade 3. Before surgery, I took iron and folic acid. Doc told me to buy stool softeners just in case I got constipated. Kathy, like all of us you will go there and be completely surprised how well you are going to endure this journey. You will probably lose your hair, but considering all things, that is secondary it grows back immediately after your last treatment. I find that the Docs does not know what to tell you about nutrition. I have been using a daily cocktail of 1 lemon, fresh ginger, 1 teaspoon of organic olive oil 1/2 teaspoon of turmeric and a dash of black pepper. I blend it together and I drink it everyday. I have been doing that since I was diagnosed. Also I blend (organic is best) strawberries, black, blue, cranberries and some beets with an organic fruit drink. I drank that every day. I hope this helps you. Do not be afraid of the chemo it is really doable. I do not believe I am sitting here typing this to you when I was in exactly the same position 12 months ago. I really do know how you feel. You will do this like a champ. I remembered during my time a friend told me her aunt had Chemo and she did it like a stalwart. Those words stuck to my mind and I did it like a stalwart also. So you kindly be my next stalwart. Love and hugs June. I will be waiting to hear from you.

Hi June, Kathy - update on hair loss
Hi June, Kathy
June - you are a year ahead of me! I too do turmeric, ginger, lemon - I grind the turmeric with Viridian Beauty Oil which is a balance of omega 3, 6, 9 - based on flax but also with pumpkin seed and avocado oil (I was given it at a press do last year - never thought I'd be using it for this but I have stocked up!). And berries - lots of. Crushed clove of garlic every day. But I dont use turmeric three days before or after chemo (report on the anticancerbook site by David Servan-Shreiber said there was a remote chance of it interfering). Anyway, coming up to second chemo on 1st Feb. Kathy, for me it has certainly been do-able so please take heart. So far, so good, anyway - no real side effects to speak of. I had been very nervous coming up to day 7 as between day 7 and 14 the white cell count falls and you can develop a serious infection requiring hospital treatment - been monitoring my temperature twice a day since chemo started and so far normal. Anyway today I went to collect my wig - ended up buying a second one (full price - the first was subsidised by the NHS). The wig fitter seemed a bit surprised that I planned to wear it every day - clearly she did not realise how vain I am! She said it would only last a couple of months so I bought the back up (which is identical) and will alternate them. Now just got to buy a couple of sleep caps and some wig shampoo and conditioner. Tomorrow am having my hair cut very short and will start wearing it after that. Actually my hair hasn't started to come out yet, but it's almost guaranteed that it will. The wig consultant said it's best to have it cut short first and then the remainder comes out into the sleep cap.
Finally, June, you mentioned omentum - I believe mine was checked (but maybe not removed?) because I saw 'washings clear' on the path report.
You're right June - there is not much official guidance on nutrition. My consultant just said have a healthy diet! That could mean anything
Take care both and keep in touch
Sue x

Welcome to the Sisterhood Kathy!
Hi Kathy! First let me say that my heart goes out to you on your diagnosis. I am a one year survivor. I had my surgery June 2009 and last chemo in Dec. 2009. Same drugs as you. You will make it through. In many respects it is a battle of the mind and the body. Your emotions likely are a roller coaster. Please keep posting when you can because we care and understand like only other women who have been told that they too have uterine cancer.
Post any and all questions as there is so much helpful advice and so much support we can give you as a group. God bless you!
(((HUGS)))) Lori

cheerful said:

Diagnosed with UPSC on February 23, 2011
Hi Kathy:

I also just joined the UPSC board and I am under the name of "cheerful" on April 1, 2011. My name is Jane and I live in the suburbs of Delaware County, PA. I am also 59 years old. I had a total abdominal hysterectomy done on Tuesday, Feb. 1, 2011. I found out I had cancer on Feb. 3rd, they thought it was adenocarcinoma, but when I saw my oncologist on Feb. 23rd, they said it was papillary serous carcinoma also known as UPSC. He recommended that I go through 6 rounds of carboplatin and taxol and he said it was very aggressive treatment.

I am starting chemo tomorrow on April 14th and will go every 3 weeks. My cancer did not penetrate the muscle or the uterine wall and there was minimal invasion to my myometrium. They do not know what stage it is in, because my gyn performed the surgery, but based on what my oncologist said to me, I truly believe that my cancer was caught at an early stage since it did not go into the muscle or wall of the uterus. I had heavy bleeding for 6 months before I had my surgery. I am going to have my lymph nodes and omentum removed after 3 rounds of chemo so that will be in a couple more months by the oncologist. My oncologist has many years of experience about 35 years so he is highly and very experienced in his field. I have heard from some of my other doctors that I see that he is a very good doctor. My gyn had referred him to me as soon as I was diagnosed with cancer 2 days after my surgery and he stopped by to see me in the hospital. I have a long and very good relationship with my gyn and have been seeing him for 28 years.

I wish you all the best with your treatment. Hope your doing okay with your chemo treatments and managing. Please drop me an e-mail when you get the chance. I am under "cheerful" and joined this group on April 1st. I too have read many things on this discussion board. I take a multivitamin every day along with other vitamins. I also take 4 medications for various health issues.

My oncologist said I am in good health and I have my age on my side as I know this cancer can hit women in their late 60s and into their 70s and I am on the younger side of it. I want to survive, fight and beat this cancer, and I am determined to. I have a wonderful husband of almost 31 years and a son who is 16 and I want to be there for both of them down the road and in years to come.

Jane

Jane welcome to the site
Sorry to have to join us in this journey. You are at a wonderful site though to get your questions and concerns answered. We have all been on the journey, or are currently traveling the journey.

I hope you are right that they caught the UPSC at an early stage. They too thought I had adenocarcinoma before the surgery, but it turned out to be be stage 3-c UPSC, I had no symptoms before the surgery, but had an abnormal PAP.

Good luck with you treatments. I hope you have a port scheduled to be inserted. I highly recommend the port.

Good luck with your upcoming staging surgery, too. In peace and caring.

MMMT
i am now 2+ years out from a post hysterectomy diagnosis of 'endometrial carcinomasarcoma stage IIIb. I am now 61 and live in Charleston SC.
My onc surgeon tried to 'frighten' me into his preferred treatment while i was still in the recovery room. I choose instead to visit an 'environmental doctor' while recovering...and then as soon as I could travel, I travelled to Boston for a 2d opinion at Dana Farber and a group consult at Mass General.As a result of those consultations, I returned to Charleston and did Avastin (an angiogenesis inhibitor) for 6 treatments. One year out, I was diagnosed with a local recurrance at top of vaginal cuff and did 6 IMRT and 6 Brachytherapy radiation treatments. One year after that (feb '11), i have been diagnosed with possible 'local' recurrence' at entrance to vaginal canal. I just finished 4 weeks in an intensive bio detox program in an effort to eliminate those agents which stimulate good cells to behave badly. I will do a local outpatient surgery next week to remove those atypical cells.

My pathway is all about wellness....because at the end of the day, the docs dont really know much at all about MMMTs....nor is there really good data about the efficacy of traditional chemotheraphy on 'poorly behaved' cells...

i encourage to pay heed to the nuitritional and other 'wellness' advice that you have received from folks on this post....because the oncology community doesnt even pay attention to those things. Like i had severe anemia after radiation and my gyn onc didnt even comment on it but my envirnomental doctor has helped me to rebuild my RBC and my WBC as well as my lymphocyte count.

Would love to know if anyone on this post also has 'endometrial carcinomasarcoma'

madcoast said:

MMMT
i am now 2+ years out from a post hysterectomy diagnosis of 'endometrial carcinomasarcoma stage IIIb. I am now 61 and live in Charleston SC.
My onc surgeon tried to 'frighten' me into his preferred treatment while i was still in the recovery room. I choose instead to visit an 'environmental doctor' while recovering...and then as soon as I could travel, I travelled to Boston for a 2d opinion at Dana Farber and a group consult at Mass General.As a result of those consultations, I returned to Charleston and did Avastin (an angiogenesis inhibitor) for 6 treatments. One year out, I was diagnosed with a local recurrance at top of vaginal cuff and did 6 IMRT and 6 Brachytherapy radiation treatments. One year after that (feb '11), i have been diagnosed with possible 'local' recurrence' at entrance to vaginal canal. I just finished 4 weeks in an intensive bio detox program in an effort to eliminate those agents which stimulate good cells to behave badly. I will do a local outpatient surgery next week to remove those atypical cells.

My pathway is all about wellness....because at the end of the day, the docs dont really know much at all about MMMTs....nor is there really good data about the efficacy of traditional chemotheraphy on 'poorly behaved' cells...

i encourage to pay heed to the nuitritional and other 'wellness' advice that you have received from folks on this post....because the oncology community doesnt even pay attention to those things. Like i had severe anemia after radiation and my gyn onc didnt even comment on it but my envirnomental doctor has helped me to rebuild my RBC and my WBC as well as my lymphocyte count.

Would love to know if anyone on this post also has 'endometrial carcinomasarcoma'

I had Stage IIIC2 MMMT
I had Stage IIIC2 MMMT (endometrial carcinosarcoma) diagnosed June 2010, surgery July 2010, chemo (Taxol & Ifex) Aug thru Dec 2010. My Gyn Onco surgeon was quite matter of fact - this is a rare, aggressive cancer, and it needs to be treated aggressively. I am deeply sorry about your recurrences, and I hope all goes well with your next surgery.

Perhaps I approach things differently, but I gather all info I can, and decide what makes sense to me. I ask lots of questions of all the medical community I encounter (I'm pretty sure I have "Pain in the A**" stamped on my medical file, but thats how I learn.

I would welcome a private message to compare notes (here I go again with the questions) since you have a few years of experience more than I.

Susanna23 said:

stage 1a uterine carcinosarcoma and adjuvant chemo
Hi - just wanted to respond to those last two posts and say hi to all you other ladies on this thread. I was diagnosed with stage Ia uterine carcinosarcoma (though my doctor always calls it endometrial others have said it should be described as uterine) in November 2010. Have had TAH-BSO plus lymph node dissection and will have final session of six rounds of carboplatin/taxol next week - started in January. I had a choice on whether to take the chemo or just opt for normal follow-up - I don't regret my decision but I have a couple of doubts in my mind about chemo (whether it will weaken my immune system long-term and invite more cancer in and whether it might select out resistant cancer cells - but weighing all this up I still decided to go for it)
I am based in London and I am very interested in the dietary/wellness approach but received little advice or information from the hospital on this aspect (although there is a complementary medicine centre on the chemo ward and I have done Reiki healing there). I have added many of the things June, above, suggested to my diet but have not taken any supplements during chemo (though I will after). Biggest change has been getting a juicer and having fresh juice every day (pineapple, ginger and cucumber today). My approach hasn't been very systematic but just concentrating on getting through the chemo first.
Best regards - look forward to hearing more from you all
Susan

clear CT scan
I just wanted to add that the CT scan I had on April 12 showed NED according to my clinic appointment today. Although it pleased me, I do realize it's not a great achievement compared to what some of you have done! My doctor admitted that this scan ought to have been done four weeks after the last chemo rather than between sessions five and six. It's my baseline against which any symptoms will be assessed and investigated. I will not be having regular CT scans, just physical exams and blood tests, going forward.
So, I've got my final carbo/taxol tomorrow and a check-up at end of July. I have been very lucky with my chemo - minimal side effects just aching/restless legs for a few days. FYI I have stage IA endometrial carcinosarcoma (also known as MMMT though my doctor doesn't seem to like that term) and am being treated at UCLH (London) - I have had TAH-BSO surgery plus lymph node dissection - the latter means I do not need radiotherapy at the moment - it is being kept in reserve in case of a local recurrence.
I wish you all the best
Susan x

Ro10 said:

Jane welcome to the site
Sorry to have to join us in this journey. You are at a wonderful site though to get your questions and concerns answered. We have all been on the journey, or are currently traveling the journey.

I hope you are right that they caught the UPSC at an early stage. They too thought I had adenocarcinoma before the surgery, but it turned out to be be stage 3-c UPSC, I had no symptoms before the surgery, but had an abnormal PAP.

Good luck with you treatments. I hope you have a port scheduled to be inserted. I highly recommend the port.

Good luck with your upcoming staging surgery, too. In peace and caring.

Hi Ro:

I noticed and read that so many women belong to this UPSC board and I wanted to join since I was just recently diagnosed. My oncologist seems to think I have a very good chance of beating this cancer since I have my age and health on my side. I am 59. He is hoping that the cancer will not return once I have all of my treatments. I am also going to have two radiation treatments after the chemo treatments are over. He did recommend 6 chemo treatments of carboplatin and taxol and I already have had the first treatment on April 14th. I noticed that all of the women on this discussion board have had 6 treatments of carboplatin/taxol as it seems to be a very standard treatment.

After my first chemo treatment, I felt achy and also had constipation, had some slight ringing in my ears and shortness of breath as the chemo drugs can cause this. I bought a stool softener to help with the constipation and found out I can use Tylenol for the muscle aches. I did feel very tired for several days after my first chemo treatment so I just took it easy. I have my second treatment on Thursday, May 5th. I also see my oncologist before I have my 2nd chemo treatment. I also am now starting to lose a lot of my hair, but already bought a wig over a month ago. As soon as the oncologist mentioned to me I would lose my hair, I went out immediately and started shopping for a wig. I finally decided on a wig very close to my hair color and style that I currently have.

Thank you for your wishes for the chemo treatments.

How are you doing since your chemo treatments have ended? That's amazing that you did not have any symptoms prior to your diagnosis of UPSC. I had 6 months of heavy bleeding and I surmised from the very beginning that it would be cancer, and I even had mentioned this to my gyn. I had 2 tests to see if it was cancer, but they did not prove anything as I had a large fibroid blocking it. I wanted to have a hysterectomy because I was so drained and felt very tired from the constant bleeding. So happy and glad that I did - and I do feel that the cancer was caught early based on what my oncologist mentioned to me as the cancer did not break through the muscle or the wall of the uterus. I felt so much better once I had the hysterectomy.

I have checked a lot of the discussion boards on UPSC and have read a lot of information. It is so helpful and informative. I am extremely hopeful that I wll be able to fight, survive and beat this cancer.

I wish you all the best as well. Please keep in touch via e-mail and let me know how you are doing.

With warm regards.

diagnosis
I am brand new at this and like all of us, there are many questions we need answered. My prayers will be with everyone who is going through this time of uncertainty. I was diagnosed on April 24th though I had symptoms for eight months. I was wondering how long should you wait before surgery once the cancer is discovered. How does the grade relate to the stage? thanks Marie A

Ro10 said:

Jane welcome to the site
Sorry to have to join us in this journey. You are at a wonderful site though to get your questions and concerns answered. We have all been on the journey, or are currently traveling the journey.

I hope you are right that they caught the UPSC at an early stage. They too thought I had adenocarcinoma before the surgery, but it turned out to be be stage 3-c UPSC, I had no symptoms before the surgery, but had an abnormal PAP.

Good luck with you treatments. I hope you have a port scheduled to be inserted. I highly recommend the port.

Good luck with your upcoming staging surgery, too. In peace and caring.

Hi Ro:

Just wanted to update you on my UPSC. I have had 3 chemo treatments of carboplatin and taxol. I have gotten a little sick for about a week after the chemo treatments and then I start to feel better. I also have had some mild constipation (I take Dulcolax once and I am okay right after the treatment and it really helps me) and I take Tylenol for the muscle aches which last for a couple of days. I am doing fine now and I am halfway through my chemo treatments. I also met with a radiologist and he is in the cancer center where I am getting my treatments so my oncologist, radiologist and chemo treatments are all in the same center which is very convenient.

The radiologist did say to me that my Cancer is Stage 1, Grade 3 and that I have an 80 to 90% survival rate. This is very encouraging to me and quite uplifting. I do also have a very postive outlook on cancer. I know I can survive, fight and beat this cancer as I am very determined to. I am meeting with my oncologist again next week to discuss additional surgery for my lymph nodes and omentium removed since my gyn had done my initial surgery which was a hysterectomy. I will see what my options are and if he highly recommends this additional surgery. Then if I have the surgery I will still need 3 more chemo treatments and radiation. My oncologist said I should be done with the treatments in the fall.

I also have met with a Stage 2 survivor of the same type of cancer (UPSC) and she is now 3 years cancer free. She is about a year younger than I am and lives close to me. She has given me some information on cancer which has been helpful and I have also called the American Cancer Society and the National Cancer Institute and they have sent me brochures as well.

Anyway, how are you doing with your cancer? Hope you are doing well.

Send me an e-mail when you have a chance and let me know how you are doing.

Warm Regards.