Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatm

ro_NJ said:

thanks Bella09
Thanks Bella - I think we're all rooting for each other. I'm sure once I begin the radiation treatments I'll meet more women experiencing the same thing. I've read a lot about the DaVinci surgery - did they also check your lymph nodes with that type of surgery? Where I'm going, they're not offering that method - they're saying I'll need another "bikini cut". But I have time before I even need to think about that.

ro_NJ
You asked if the doctor checked my lymph nodes. After surgery my doctor told me that my lymph nodes looked questionable. He removed 54 and at my follow up appt. he said that they were all clear. I should have asked if they checked all 54 or a percentage. My doctor said before surgery if he was not able to do the DaVinci, due to a large uterus, he would do another type of hysterectomy. If he did the other type, he would still check my lymph nodes. I ended up having the DaVinci. Did the doctor tell you that he couldn't check your lymph nodes during your initial surgery?

Roll Call
Howdy! Margie (aka ThirdHorn) is present and accounted for!

I was diagnosed with UPSC in January 2008. I had all my inner parts removed via Da Vinci robotic surgery. Cancer was confined to the uterus; no lymph node involvement. Two-and-a-half days after surgery, I was home - no restrictions. After much research, I decided against having chemotherapy or radiation. I see my gynecologic oncologist every four months, and, so far, so good. The most annoying side effect I had was bloating. They discovered that I was accumulating ascites by the liter, so I had my belly drained three or four times. My oncologist was mystified; and then, it stopped happening. We still don't know what the deal was. I also developed lymphedema in both legs (I had problems with it in the past, and the surgery just made it a little worse). I went to a lymphedema clinic for six weeks of manual lymphatic drainage and lessons in wrapping my legs. Worked like a charm. I feel very, very fortunate for lots of reasons.

I also had breast cancer in 2003, for which I had chemotherapy and radiation. The chemotherapy worked extremely well, and we were able to shrink the almost 5cm tumor so that it was almost imperceptible on the mammogram. I was, therefore, able to have a lumpectomy. Again, no lymph node involvement. Excellent outcome.

One of the best things I did (besides reading all the posts here) was get a page at CaringBridge.Org. It's free and it allowed me to keep in touch with my friends all at once, and it gave them a chance to keep in touch with me AND everyone else. I gave my password to my brother and to a friend, so they were able to post something as soon as I was safely out of surgery. Very cool.

I'm keeping all of us in my prayers. A stalwart group!

MaryAnnOnTheBay said:

Mary Ann, San Francisco Bay, UPSC recurrent
Mary Ann, UPSC, diagnosed February 2006. IIIa I think. Anyway III. Nothing in lymph nodes, a few rare cells in the wash. Surgery at California Pacific Medical Center, SF. Chemo at San Franisco Oncology, which has offices adjacent to CPMC. Carboplatin and taxol, Summer 2006, ending Sept 15, 2006. Hair presentable in December 2006. Recurrence discovered July 2008. Node found in omentum during surgery and nodes on base of lungs during CT scan. Smaller doses of taxol and carboplatin due to kidney problems. December 2008 through March 17, 2009. Due to start topotecan, used for recurrent cancer, about the end of May 2009, once a week. Never any discomfort from the disease itself, discomfort comes from treatment and kidney problem treatment. 73 years old. Never had radiation. retired. My friend in the picture is Lobo. You can call me Mary Ann on San Francisco Bay, or Mary Ann On The Bay, or Mary Ann SF (shorter) or anything to distinguish me from early member Mary Ann/Daisy.

Roll Call-Cecile and UPSC4b
Hi Mary Ann. We seem to be the closest match: I live in Santa Cruz, am 68 yrs old, have UPSC4b, and am being treated at Stanford. Labor Day 2005 I had an emergency hernia operation and the path report said I had uterine cancer. Had a total hysterectomy in Oct. The gyn onc surgeon saw no sign of cancer, but the path report said I had UPSC4b (since I was feeling great and my CA125 was 16, it was quite a shock). Starting Halloween I had 7 rounds of cisplatin, taxol, adriamycin and neulasta. After the first week I had no side effects from the treatment. CA125 went down to 3. Eighteen months later the CA125 was 295 and the CT scan showed a few tumors and lymph nodes. My gyn onc and a gyn rad decided to operate and radiate at the table on Valentine's Day 2007. They took one look, saw tumors and oddities attached all over the abdominal cavity and sewed me up. Took 4 rounds of topotecan with no lowering of CA125 and no side effects. In June (Friday the 13th) I started six rounds of carboplatin and taxol. No side effects and CA125 went down to 13. On Inauguration Day 2009 I had another emergency hernia operation (my bowels had herniated and kinked). The general surgeon saw no signs of cancer. In June 2009 my CA125 was 300 and the CT scan showed tumors and nodes. Monday I'm starting carboplatin and doxil--a "coated" version of adriamycin that doesn't wreck your heart. I'm curious to learn how they "coat" an IV fluid! Ran out of room! Cecile

satarell said:

hi im satarell from texas
hello my name is satarell or sat for short. I am 27 years old and I was diagnosed with adenosarcoma about 2 weeks ago. They want to do a full hysterectomy but keep going back for more biopsy. I haven't had any kids so they have gone to 3rd and 4th doctors to see if there are any options. They removed a cerviacl polyp that had mixed cells. They also found another mass on my right ovary.
I worry they are to concerned over child birth more then the cancer.

Selene from Texas
Hello my name is Selene, I'm 27 years old and I was diagnosed with Adenosarcoma about two weeks ago. I have a full hysterectomy set for September 15. Does anyone have information about adenosarcoma?

linda66 said:

Hello again
Thanks to everyone for their friendly welcome to me on this site.

I started losing my hair at the end of the second week after 1st chemo. I took others' advice and got all my hair buzzed & now have a short stubble. It wasn't so bad. I took a before and after picture and then used a turban at first. I now wear my wig for some occasions, but at home or general activities I am wearing a hat or turban. I'm surprised that I am getting into it and am getting out all my old dangling earrings.

I go for my second chemo this coming Wednesday and am trying to prepare for it so I don't have times of fainting, vomiting, and dehydration as I did after the first chemo. I am drinking lots of fluids and have started varying the types. Has anyone heard of eating salty foods to try to keep from dehydrating with salt helping your body to hold water? I thought I was drinking lots of water after my first chemo but still got dehydrated.

Deydration......
Try drinking pydealite (sp?). It's given to children who are ill to keep their electrolyites up. Salt is good for your body but can thin your blood and you can bleed easily after chemo/radiation treatments. At least I did. Bruised easily too. Best of luck to you...

bonnyboop said:

Bonnyboop
I went on "thank you"s profile....you are the lady from Greece who's mom has cancer.....and you had a new baby!!! Thank you for your comment. You are doing exactly what you and your mom needs right now and I must tell you, that wee babe of yours is THE BEST MEDICINE you're mom can ever have. My daughter just had a daughter "Willow" May 26th 2009(exactly 2 wks after my 3rd treatment). I must tell you, that sweet baby girl is what keeps my attitude up!! She is the spirit that lights my path to good health. I want to know her for as long as I possibly can and someday know her sisters and brothers and my son's children, if we are lucky enough to have more grand-babies. You may not tell your mom everything, I'm sure she knows deep down and loves you all the more because you do not want her to worry anymore than she has to. You are a lovely daughter and now that you have your own child, you know the love that a mother feels for her children. Bless you and your mom. Good health and happiness to your family.
I try very hard to keep my spirits up especially around my family (daughter 28, son 21 and my adorable husband) after all, they too are under a lot of stress. They don't need to feel my stress as well, they have their own. I have good friends that I can break down around. They are wonderful and seem to be able to handle my cancer because it is not directly related to them. Lean on who you can. You'd be surprised how many people are out there and willing to listen...just like you did. All the best to you...Bonnyboop

to bonnyboop
It's so relieving to read commends like yours! I am at starbucks trying to study for my rheumatology boards. I come here early morning each weekend to study, but many times it is so difficult to concentrate.... going back to what happened and what I should have done to prevent all this suffering of my mom.... Well it's done, and I can not change it.
You are so right about the baby. They are so connected now. There are many times that I see them playing together and it is difficult to hold my tears. I know that it would be much more difficult to survive all this without my daughter. I remember that she was the one who pulled my mom's first hair after the chemotherapy. We were both shocked, but started laughing, so the baby won't be scared. We went to find wings and I was putting some crazy wings to my daughter's head... laughing again....
The GOD sent your granddaughter to you at this time. I can imagine you hugging her, and as she grows older teaching her what you know. No matter if your daughter is a mom and has her own family SHE NEEDS YOU NOW and you will stay with her for LOOOOOONG TIME to help her rise all her children.
Have a nice day
Chrysoula

unknown said:

This comment has been removed by the Moderator

Roll Call
I was in peri-menopause and had migraines every month. The last few months I started to bleed a little more than usual. Instead of my primary care doctor I want to the gyn for my yearly physical. At that point he thought peri-menopause. However, my PAP came back abnormal. He than scheduled me for a D&C. Due to the position of the cancer, he could not finish the D&C. The Pathology report came back as Grade 3, mixed cell. I was then referred to a gyn/onc.

The gyn/onc told me that upon looking at my path report, he thought that I would probably need chemo/radiation. He did explain that sometimes the path report from surgery is downgraded but he doubted this in my case.

Surgery was done Aug 26th with everything removed. Luckily I had robotic surgery and was home the next day. The pathology report came back as a Stage 1C, Grade 2. My doctor had all smiles when he told me my diagnosis. According to him, no further treatment is necessary. However, I am in the process of getting a second opinion at Moffitt In Tampa, FL especially since the pathology reports were different. Moffitt is going to review the slides from both surgeries.

This site has been very helpful because it seems that it's unknown what treatment is necessary for endometrial cancer. Seeing a few posts with others in the same stage and grade is very helpful. I've tried with little success to find any clinical trials for my stage. It seems that some doctors opt for further treatment (chemo/radiation) while others decide upon no further treatment. Also, I have been researching diet/nutrition regarding uterine cancer.

Susie