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Uterine Cancer

Sally-r
Posts: 8
Joined: Dec 2011

Hi,
My mother, who just turned 71, was recently diagnosed with uterine cancer and awaiting to see a gynecologic oncologist next week to find out the stage and grade. Does anyone have the name of a good gynecologic oncologist in the Dallas, TX area? We were give a name by her GYN but of course, I would love to seek a second opinion.

Any help would be great appreciated.

Sally

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

I do not know the Dallas area. There is a national gynecologic oncology association. YOu might google this and find docs in your area and do some independent research online in addition to getting recommendations.

I think a second opinion is a very good thing.

Best wishes. Mary Ann

Sally-r
Posts: 8
Joined: Dec 2011

Thank you so much Mary Ann! I appreciate your help. I will keep you posted.

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Hi Sally - my colleague and I both have/had endometrial cancer and highly recommend dr Alan Munoz. He offices near Medical City Dallas and at Plano Presby.

Liz in Dallas

Sally-r
Posts: 8
Joined: Dec 2011

Hi Liz,
Thank you so much! I will definitely be giving them a call. I appreciate your help. I was just given a name of another doctor - Dr. Jonathan Oh.

How are both you and your colleague? I sure hope you both are doing great.

Sally

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Hi Sally - my colleague had the 'good' uterine cancer if there is one... Endometrial cancer tends to be slow moving. She's had gyno problems for over a decade but you'd never know by looking at her. Iwas diagnosed with the 'bad' uterine cancer: uterine papillary serous carcinoma. I'm lucky that we stumbled upon it early (Stage IA). I've had 2 surgeries (laparoscopic hysterectomy which led to my diagnosis, and open abdominal surgery to remove all sorts of other things and confirm the cancer hadn't spread) and am now going through chemo which hasn't been awful.

Hugs to you and your mom,
Liz

imackie48
Posts: 92
Joined: Nov 2011

Liz, did your docs recommend radiation, I have the same diagnosis as you do. I am scheduled for 4 taxol/carpl,. and tHey are talking about brachytherapy.
Irene

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

I've just completed the second of three taxol/carboplatin chemo sessions, and will discuss radiation in early February. Not sure if they're going to recommend internal or external, and how many sessions if any. I'm trying to take things one day at a time to keep the stress level in moderation :)

So far chemo has been tolerable, with one bad week followed by two super weeks. I like the way I look bald, even!

Liz in Dallas

Sally-r
Posts: 8
Joined: Dec 2011

I got the official results. Serous Carcinoma stage 1a grade 3. They are recommending sandwich therapy, which is basically 3 series of taxol/carboplatin followed by internal radiation and then the last 3 chemo series. The hysterectomy got it all but the chances of it recurring are very high. My mother is very scared, at 71, she is leaning towards not taking the treatments. However, I would like her to but am definitely unsure of myself as I do not want my mother to suffer. She is no pain or symptoms right now. How soon after you begin treatment did you lose your hair? How did you feel after each treatment? When you say you had one bad week? How was that?

I'm glad that you are doing well and that you are taking it one day at a time...that's the only way to do it.

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Hi Sally -

Your mom has many 'sisters' on this board with UPSC Stage IA. As a grade 3 cancer, it's extremely virulent with a high risk of recurrence. Recurrence is often distant rather than local (ie, it'll next show up in the lungs or liver) and at that point may become incurable.

Treatment protocols appear to vary across oncologists. I've heard some gyn/oncs recommend just observation and many in the sisterhood remain NED with no medical intervention beyond the surgery.

Others recommend varying combinations of chemo and radiation. The sandwich methodology your mom was recommended I believe is recommended by MD Anderson and many other experts in the field (although this particular cancer is so uncommon that there aren't many research studies that focus on UPSC rather than lumping it in with the more common/easier-to-treat endometrial cancer).

I've been to both gyn/oncs in the practice I go to. One recommended observation, the other recommended chemo and radiation. However, it doesn't appear as if he's recommending the sandwich treatment - I'll have a total of 3 chemos (taxol/carboplatin) and then radiation (unknown yet if they're recommending internal or external and what frequency).

Probably everyone's response to chemo is different. For me, the chemo itself is a walk in the park - I sit in a comfy recliner for 5 hours once every 3 weeks. I read, I listen to music, I chat with the other ladies in the chemo room... The side effects are more interesting:

> Insomnia - there are enough steroids to take before and after chemo that there are a few nights of sleeplessness each treatment
> Urine-fest - the steroids, coupled with the amount of water to stay hydrated (8-10 glasses EVERY DAY) means more trips to the bathroom, including waking up at night to trek to the toilet.
> Metallic mouth taste - makes most foods taste not right; for some there is a loss of appetite but with the steroids I find myself ravenous and have a hard time reaching for carrots instead of cupcakes.
> Bone pain - for me this has been the worst; hydrocodone doesn't put a dent in the pain so for 7-10 days after chemo I'm ranging from uncomfortable to agonized. Most ladies don't have this extreme pain (just 3-4 days) so I'm just special I guess. Ugh.
> Hair loss - this starts about 17 days after the first chemo. I had my hair cut about 4 inches before this happened so it wouldn't be as gross when it happened. It's less dramatic than in the movies - the most hair came out in the shower and on the hairbrush rather than on the pillow at night or pulling out hunks of hair. I had my head shaved a couple of days after my hair started falling out and I actually enjoy the bald look - no more bad hair days! There are lots of ways to wear scarves and turbans, and my wig is real-looking enough that no one stares.
> Fatigue - for me it's mostly due to the insomnia and bone pain. But that lasts 7-10 days and in the week to 10 days before chemo I feel awesome.

Is your mom in good health other than this diagnosis? If so, I'd recommend at least the chemo. I have to admit the radiation part scares the bejabbers out of me - but I'm trying to keep my head in the sand about that until chemo's over and I can ask the doc tons of questions.

Hugs to you and your mom!

Liz in Dallas, who is having a super week

Sally-r
Posts: 8
Joined: Dec 2011

Hi Liz,
It is so overwhelming. We are meeting tomorrow to discuss options. My mom is in great spirits, however, she's witness chemo effects with she cared for her mother but that was over 15 years ago...I tell her that technology has changed. I think what scares her the most is not knowing how it will effect her and the lack of guarantee she is given.

She is in great health...only thyroid disorder that she has has lived with since she was about 38 years. Actually, my mother has never had a hospital stay or a catheter until she had her hysterectomy. :) She is so blessed!

You know Liz, you live really close to me, maybe one day we will get a chance to meet.

Thank you so much for your insight...so glad to see you are having a SUPER WEEK!

Sally

Sally-r
Posts: 8
Joined: Dec 2011

Hi Liz,
It is so overwhelming. We are meeting tomorrow to discuss options. My mom is in great spirits, however, she's witness chemo effects with she cared for her mother but that was over 15 years ago...I tell her that technology has changed. I think what scares her the most is not knowing how it will effect her and the lack of guarantee she is given.

She is in great health...only thyroid disorder that she has has lived with since she was about 38 years. Actually, my mother has never had a hospital stay or a catheter until she had her hysterectomy. :) She is so blessed!

You know Liz, you live really close to me, maybe one day we will get a chance to meet.

Thank you so much for your insight...so glad to see you are having a SUPER WEEK!

Sally

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

Harry Hines & Inwood in Dallas, Tx. ITSW also runs St Paul's Hospital. This is where I had my surgery for Uterine Cancer and where I went to see the Gyn & Oncologist Dr. Jayanthi Lea, MD. She was very through and does explain things to you. My support group, sister, best friend and daughter all loved her as she expained things in a way we could all understand. I had stage 3c1 MMMT or carsinomasacroma (?) that was DX in April 2011, had surgery at St. Paul, then follow up chemo treatment at the Simmons Cancer Center across Harry Hines. This center is National Cancer Institute recognized. The Chemo nurses and other staff are great.

Contact Information
UT Southwestern Medical Center
5323 Harry Hines Boulevard
Dallas, Texas 75390

To make an appointment, call 214-645-8300.

Dr. Jayanthi Lea joined the faculty after completing a four-year gynecologic oncology fellowship at UT Southwestern where she was also a scholar of the Reproductive Scientist Development Program. Following a hiatus as Assistant Director for the Division of Gynecologic Oncology at Carolinas Medical Center, she rejoined the UT Southwestern faculty. She is certified in minimally invasive robotic surgery, advanced laparoscopic surgery, and specializes in the treatment of ovarian, endometrial, and other gynecologic malignancies as well as the treatment of pre-invasive cervical, vaginal, and vulvar disease.

Until they do the actual surgery and send everything to pathology they will not be able to tell stage/grade. They will be able to tell what kind of cancer cells that are involved. Sorry your Mom is having to go through this but having support is a big plus. Whether you do go to this dr or another, always take pen & paper, write your list of questions down then the answers. If you do not like the answers ask the question again and ask them to explain in lay person terms. Have your Mom always take someone with her. It is easier if someone ask the questions and someone listens. The first two visits with the dr we recorded the conversations on my daughters iphone. It helped. Good Luck with the drs. trish

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

There are studies all over the Internet that indicate "When the [uterine papillary serous carcinoma] lesion is confined to an endometrial polyp and/or the endometrium proper, the clinical outcome is excellent." In fact, most studies show that 100 percent of the women with OLD FIGO Stage 1a who underwent this treatment protocol are alive and well many years later. I would suggest Googling UPSC Stage 1a and seeing for yourself. Yes, this is a very aggressive cancer, but I do not think that I am painting an overly rosy picture by sharing these positive study results.

I believe in HOPE; and if reassuring study results can help a newly diagnosed woman, then I feel obligated to share the information that I have.

Jill

Sally-r
Posts: 8
Joined: Dec 2011

Hi Jill,
Thank you! I will definitely look that up. Trying to do as much research as I can. I want to give my mother all the information to make the best decision.

The support we are receiving from this sight is great! I don't know what I would do without you all.

Thank you,
Sally

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