Which UPSC Sisters haven't found us yet in our new site location?

roxiesmom said:

hi Deanna and Ro,
I live in Aliso Viejo, CA. Just south of Newport Beach. I know I'm 54, but I really think I'm 40 - like Deanna. I'm going to name drop here, only because I think it is just surreal. The actress - Annette Benning's sister is a gynocologist in Newport Beach. I could never afford to go to her because she doesn't take insurance.
-She is a neighbor with one of my best friends.
Who only happened to mention to her that her friend (me) had some bleeding - was that serious? Jane (Benning) told her to tell me to assume it's cancer and work backwards. I probably wouldn't have actually gone in that quickly had it not been for that. I will thank her for that one day. I went to the onc/gyn doc that she recommended after I found out how right she had been.
My hospital is Saddleback - just because it is super close - my doctor works out of there, UC Irvine, and Long Beach Memorial. Had all the organs removed two weeks ago. Starting chemo the 19th, and scared to death. I don't know what grade I am. I know it's a tough cancer to get, but my doc is not recommending radiation, similar to a few others here.

Deanna - did you have it anywhere other than the uterus and one node?
Why are our therapies so different, I wonder?
Mine was the uterus and one tube. No nodes. But I still get the barbaric chemotherapy that all of you brave soldiers have battled. I've heard such hideous things, like cancer sores in the mouth,
puking, sore bones, I just can't wait.

Other than what they are going to give me for all of that - any suggestions to prepare? Don't eat much before you go in?

They tell me it's a 6 hour ordeal.
What do you do for 6 hours? Sleep? Be sick?

Every book I read about cancer tells me to NOT have chemo, to just get super alcaline (which I am now) and fight it with my own immune system, which there won't be much left of, after chemo.
I'm just depressed - and so scared. It's just me and the two knuckleheads in the photo. No one else.

I am so glad I found you!
Susie

Welcome, Susie. Glad you're here.
Warmest welcome. Cancer is so scary and everyone needs a place to communicate with others going through the same thing. I strongly encourage you to get a paper copy of the pathology report from your surgery. You need to know the GRADE and STAGE of your cancer, so that you can make informed decisions on your treatment options. For instance, if you have a Grade 3 (fast-moving, sneaky, and sometimes resistant to treatment) cancer, you will want to fight for the most aggressive treatments because you'll want to do everything you can to stop the spread of these fast-growing cancers. But if you have a Grade 1, Stage 1 cancer, you will have the option of weighing any long-term side affects against the curative benefit of any offered therapies. You'll feel and be much more empowered once you know EXACTLY waht you are up against. And we'll be able to help you more with research and personal experiences once you have all the facts on your particular cancer. ((((Susie))))). Big hugs, kiddo.

unknown said:

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Patricia: some additional exerpts from the new Gyn-Onc study:
This is a very technical article, but I hope it will help you decide whether chemo and radiation is something you need to do. I am pulling out JUST the information on Stage 1 UPSC:

Cited Article: Boruta DM, et al, Management of women with uterine papillary serous cancer: A Society of Gynecologic Oncology (SGO) review, Gynecol Oncol (2009):

The prognostic significance of thorough surgical staging was
emphasized by their finding of 94% overall survival in women with
tumor limited to their uteri (22 women with 2–73 months of followup).
Turner et al. noted a significant 5-year survival difference in a
group of 38 women with “stage I” UPSC depending on whether
complete surgical staging had been performed or not (100% vs. 61%,
respectively). In a study of 206 women with surgical stage I–II
UPSC, Fader et al. demonstrated that recurrence and progression-free
survival were not associated with increasing percentage of UPSC in
the histologic specimen, lymphovascular-space invasion (LVSI), or
tumor size. Patients with UPSC in their uterine specimens were at
a significant risk for recurrence (21% overall) and poor survival
outcomes regardless of the percentage of total tumor comprised of
UPSC.

Stage I UPSC has a poor prognosis with a high rate of recurrence,
primarily extra-pelvic in nature. The development of effective
adjuvant therapies should be considered a priority in this subgroup
of women. Historically, radiotherapy has been the mainstay of
adjuvant treatment for endometrial carcinoma. Because of the
tendency for UPSC to recur within the peritoneal cavity, most
investigation of radiotherapy for early-stage adjuvant treatment has
focused on whole abdominal radiotherapy incorporating a pelvic
boost (WAPI). Kwon et al. reported on 23 women with stage I
UPSC (only one surgically staged) treated with WAPI, none of whom
received chemotherapy. Five-year survival was 78.3%, but all
recurrenceswere within the radiated field. An additional retrospective
report by Lim et al. described 43 women with clinical stage I UPSC
treated with an adjuvant WAPI protocol. Of 10 patients that
recurred, 7 did so within the field of radiation.

A retrospective study by Huh et al. reporting a group of 60 women
with stage I UPSC is unique in that all were comprehensively surgically
staged. Post-operativemanagement consisted of observation alone
in 40 women (66%), adjuvant radiotherapy in 12 women (20%),
adjuvant chemotherapy in 7 women (12%), and a combination of
radiation and chemotherapy in 1 woman (2%). The radiation delivered
was WAPI in 3, whole pelvic and brachytherapy in 5, and vaginal
brachytherapy alone in 4 women. The risk of recurrence and overall
survivalwere equivalent between those that received either no adjuvant
therapy or radiation therapy alone (17 vs. 16%, and 66 and 59%,
respectively) prompting the authors to question the benefit of radiotherapy
in women with surgically staged UPSC confined to the uterus.

The GOG completed the only prospective study of adjuvant
radiotherapy in women with early-stage UPSC. Twenty-one
women were treated with WAPI consisting of 3000 cGy at 150 cGy/
day to the abdomen and a pelvic boost of 1980 cGy at 180 cGy/day.
Eight of 19 evaluable patients died of recurrent UPSC, 5 of whom
had recurrent disease within the radiation field. The authors
concluded that other adjuvant approaches, namely chemotherapy,
perhaps in combination with radiotherapy, should be evaluated in
this population.

Based on the propensity for peritoneal recurrence in women with
UPSC, Fakiris et al. performed a unique study to evaluate the potential role of adjuvant treatment with intraperitoneal radioactive phosphorus
(32P). Seventeen of the 21 patients were stage I–IIB, and
all had undergone comprehensive surgical staging including maximal
cytoreduction with no residual disease N3 mm. Recurrences included
two intraperitoneal and two vaginal. The vaginal recurrences
prompted addition of vaginal brachytherapy to the regimen, after
which no additional vaginal recurrences were noted.

The high frequency of distant recurrence in stage I UPSC, along with
treatment failures within the radiation fields, has led to increasing use
of adjuvant chemotherapy and reports of its success. For example, in
the above noted study by Huh et al., none of 8 women whose adjuvant
treatment included chemotherapy experienced recurrence.
Dietrich et al. reported their use of platinum-based adjuvant
chemotherapy in 29 women with stage I UPSC. Treatment
consisted of carboplatin (AUC 6) and paclitaxel (135–175 mg/m2) in
21 women. All were alive without evidence of disease 10–138 months
after treatment. One vaginal recurrence after 3 cycles of adjuvant
chemotherapy was successfully treated with chemo-radiation.
In the largest retrospective series in the literature on women with
surgical stage I UPSC (n=141), Fader et al. demonstrated that while
early-stage patients have a significant risk for extra-pelvic recurrence,
recurrence and survival outcomes were significantly improved in
patients whoreceived platinum/taxane chemotherapy±radiotherapy
compared to women who received no adjuvant therapy or radiotherapy
alone [87]. Women treated with platinum/taxane-based
chemotherapy had a significantly lower recurrence rate (11.2%)
when compared to patients who did not receive chemotherapy
(26.9%; p=.021). This effect was most pronounced in women with
stage IB/IC UPSC. On multiple logistic regression, only chemotherapy
and substage impacted recurrence. Progression-free and causespecific
survival for women treated with chemotherapy was more
favorable than for women who did not receive chemotherapy
(p=0.024 and 0.081, respectively). Again, this difference was most
pronounced in stage IB/IC UPSC (p=0.003). The overall recurrence
rate in this study (17%), along with the finding that most recurrences
were not salvageable (91.7%), suggests the need for improved systemic
therapy in the treatment of early-stage UPSC as well as improved
second-line agents.

A retrospective, multi-institution study including 83 womenwith stage I
UPSC concluded that observation could be considered in patients with
stage IA disease. Although UPSC recurred in 3 of 32 women (9%)
with stage IA disease, only 1 of 22 stage IA women (5%) who
underwent observation alone experienced recurrence. Recurrence in
stage IB/IC disease occurred in 15 of 51 (29%) of women. Similarly,
Thomas et al. proposed that women with comprehensively surgically
staged IA UPSC should undergo observation, while adjuvant chemotherapy
and vaginal brachytherapy be considered for those with
stage IB and IC disease [97]. No recurrences were detected among the
15 women with stage IA UPSC, regardless of post-operative management
but distant recurrence was noted in 3 of 13 women (23%) with
stage IB and IC UPSC who did not receive any adjuvant chemotherapy.
Alternatively, in the series by Fader et al. which included 55 women
with surgical stage IA UPSC, three of 21 women (14.3%) who did not
receive adjuvant therapy (radiotherapy alone or chemotherapy±
radiotherapy) recurred within 2 years [87]. Two of these women died
of disease following extra-pelvic recurrence.

RECOMMENDATIONS:

• Comprehensive surgical staging should be performed when
feasible in all women diagnosed with UPSC. In addition to simple
hysterectomy, bilateral salpingo-oophorectomy, pelvic and paraaortic
lymphadenectomy, and washings for cytology, performance
of omentectomy and peritoneal biopsies should be considered
given the propensity for UPSC to metastasize within the peritoneal
cavity.
• Adjuvant therapy, including platinum-based chemotherapy and
vaginal brachytherapy, should be considered in women with stage I
UPSC.
• The relatively favorable prognosis of women with stage IA UPSC
with no residual uterine disease after comprehensive surgical
staging may justify close observation alone. However, adjuvant
chemotherapy and vaginal brachytherapy should be considered in
other stage IA patients.
• Women with advanced-stage UPSC are best treated with optimal
cytoreduction of metastatic disease followed by adjuvant platinum-
based chemotherapy (carboplatin and paclitaxel or cisplatin
and adriamycin).
• Careful long-term surveillance following treatment is indicated
given the higher rate of recurrence in UPSC patients compared to
those with EEC.