CSN Login
Members Online: 18

Roll Call

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

They are doing a roll call over on the Ovarian board....maybe we could do the same? Take a look at their board and see what you think. Best, Debrajo

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

UPSC stage 1a diagnosed 10/20/11
Surgery 11/7/11 - removed ovaries, tubes, cervix, cuff, 22 lymph nodes, omentum + pelvic wash (cancer was discovered after 10/17/11 hysterectomy)
3 round carboplatin/taxol, 25 external rads over 5+ weeks, 3 more rounds of carbo/taxol
Last treatment 6/5/12
Last checkup - yesterday!

Feeling great, but had PTSD flashbacks the week of cancerversary, still have low magnesium and some joint pain and chemo brain. Doc says the first 2 years are the riskiest in terms of recurrence. Most days I feel 'safe' but others its like waiting for the other shoe to drop. Loving having short hair, but missing the days of not having to shave my legs.

Liz in Dallas, who would have gone nuts without this board

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

Name-Debra(Jo)Phillips
Age-this month 61, 57 at dx
Diagnosed- July 26, 2009
Open-heart surgery first, Sept.29,2009,then e-coli blood infection Oct.8. 2009, Radical Hysterectomy Dec.3, 2009 Everything removed but nodes
UPSC 1a,grade c poorly differentiated
Five rounds of internal radiation
Six rounds of Taxol/Carboplatin
NED since May 8, 2010
Lives in- Vidor, Texas

Did go nuts...this board brought me back! Mostly!!!

TAyers's picture
TAyers
Posts: 41
Joined: Aug 2012

Name- Tami Ayers
Age 46
Diagnosed-May 18 2012
Surgery- UPMC Passavant Hospital; Dr. Comerci, June 4,2012 Total radical hysterectomy, only vaginal cuff left.
tumor in uterus, fallopian tubes,and 3 out of 21 lymphnodes affected.
Chemo June 26- 6 cycles of carboplatin and taxol every 3 weeks ( took 20 weeks).
Radiation November 26- 25 sessions external pelvic and 2 internal HDR brachtherapy.(still going through it) mainly diarrhea and cramping as side effects.

I get nervous when I read about all the reaccurances, I am trusting in the Lord for my healing and know it's not in my control.

This board has made me feel not so alone.

TAyers's picture
TAyers
Posts: 41
Joined: Aug 2012

I live in Girard Pa near Erie.

NorahS
Posts: 93
Joined: Dec 2012

UPSC stage 3C diagnosed late July 2012

Have completed 5 rounds of carbo/taxol -
(which blessedly I have had very few side effects from)

Next chemo December 28 2012
(will probably know next steps in treatment early January 2013)

Other info:
59 and live in British Columbia, Canada
(Very new to posting here, but have been reading here for months)

My name is actually Sharon - which is 'NorahS' backwards

kfparke's picture
kfparke
Posts: 7
Joined: Jan 2011

My name is Kathy and I live in Wichita, Kansas
Diagnosed: November 2010
Surgery: December 22, 2010 Da Vinci Robotic: Hysterectomy done by Gyn Oncologist. 35 lymph nodes removed.
Diagnosed: Uterine Carcinosarcoma (MMMT) Stage 1A
Age at Diagnosis: 59
Treatment: 6 rounds of Carboplatin/Taxol - started end of Jan 2011 and completed end of May 2011
CA 125 = 8 as of September, 2012
Latest Cat Scan: June, 2012 - No Evidence of Disease
Retired one year ago from my job of 32 years and am loving every minute!!

sunflash's picture
sunflash
Posts: 146
Joined: Aug 2011

June 17, 2011, UPSC presumed to be 1A, was discovered after I began having atypical endometrial cells (AGUS) pap smears. Davinci hysterectomy performed including cervix, uterus, fallopian tubes and ovaries. No lymph nodes were sampled as cancer was not suspected. UPSC was confirmed (4.5 MM polyp) after the uterus was cross sectioned during the pathology process.Pathology showed negative wash, but suspicion of LVSI. This was my second primary cancer.

2nd opinion received from MD Anderson and doctors agreed with treatment plan and agreed that cancer was not advanced. Have had only one CT scan since treatment, and CA 125 is 4, but probably not good indicator for me as it was never elevated.

I received 6 cycles of Taxol/Carboplatin spaced 3 weeks apart. No radiation was given as I had already had radiation treatment during my vaginal cancer treatment in 2007.

Treatment finished Nov 11, 2011. I see my doctor every 3 months for checkups. Next appointment in January will be 14 months post treatment.

Vaginal cancer diagnosed in March of 2007. Received weekly Cisplatin with daily radiation treatments and brachytherapy. Had no complications from radiation and NED for almost 6 years (Woo-Hoo!)

Feeling blessed that UPSC was caught early because of being watched carefully by my gyno-oncologist.

Prayers and Christmas blessings for all of you,
Diane in Houston

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

 My house is one of the red tiled roofs in this picture of Western Jerusalem with old and new together. I made my ID photo Jerusalem with the a three Holiest places for the three main religions. My prayer to us all is Peace and Full Recovery!

 In July 2010 on 'holiday' to NY.Dx pretty much on my own initiative after two weeks of constipation that didnt improve and 'kick in' with first line of defense which I started back home: prunes, laxitives, enmas. Went to Gastro Doc on a Friday. Told me: run don't walk for Bloods and CT. By Monday had appoint at Gyn/Onc. By Thursday surgery. Full 'roto router' and removal of all uterus and points east, west, north and south. Stage IV B Grade 3 Uterine Adenocarcenoma, Clear Cell and Undifferentiated, Omentum out, and in ascitis (?).

Did research on Chemo option in NY. Felt that as my Stats were in the toilet and all that I had going for me was attitude, and Chemo is in a bag in USA and Israel, I,d go home where I had support system of family, friends and hospital where I have worked for 26 years as Psychologist.

did Carbo six rounds once every three weeks. Taxol every day four times for four rounds, then two rounds prof Doxil still with Carbo. White and Red count in toilet, needed multiple blood transfusions to keep on protocol. done Jan 2011. CT ok in May no ,permission, payment, For PET. Worked on days I could.

Had regular blood tests, Cancer Markers all fine.

September, Rosh Hashana our New Year, felt PTSD, same constipation, same pain, Day after got myself to CT, guy I'd treated owed me favor and took me immediately, 8cm tumor. 

Doc consensus to do chemo to shrink tumor then operate. I'd finally built up my stamina and felt getting me 'down' by Chemo then Surgery Was nuts. Paíd for PET, Was Repaid by INSURANCE when they saw tumor.

sent results  To MY NY GyN/Onco And PhD he'd look ands see if he could operate without first chemo to shrink. Tumor touching but not in colon. Operated, resected 15cm of colon. Started yoga and excersizeing ten days after surgery. Chemo R something, I am blocking out name , put me flat out. Went home six weeks after surgery.

restarted chemo. Immune system pretty much crashed. No more chemo. Began Radiation Cause new tumor seen in lymph nodes in pelvic area. Finished Feb 2012. Went to Hong Kong and Australia with hubby. Back for Passover with family.

august 2012 new lymph node lit up on PET, now insurance doesn't argue as the bloods and ca hormone Tests were fine and tumor still there!

New Rads in three places. Peri ventricular - neck, peri aortic- stomach and pelvic wall. Finished with that one July 2012. new tumor Sept in stomach wall lymph node. Rad again finished month ago, November. Went to London last week, party for dear friend and gave a lecture.

Pet yesterday. Two nephews Radiologist, got 'unofficial' I.e. Not from hospital but from their private practices, one here and one in States-- glory of computer zapping disc results!

heard last night, early morning our time. Looking good. No new sites, yet.

by the way bought a Far Infa Red Sauna, research shows does Hypothermia and cancer cells tend to apoptosis (?) commit suicide! Anyway very relaxing can stay inside it for over Half an hour unlike wet Swedish saunas, ten minutes. hubby loves it and he deserved a Chanukah Present too!

now 6:44 am up since 5:30. Will do half hour on treadmill, then FIR Sauna then shower and off to work  till two, used to work till seven.

Thai Massage Thursday, try for once a week. 

That's all folks.

p.s. love new site once they let me back on!

 

Sara

Sisters three's picture
Sisters three
Posts: 149
Joined: Nov 2012

I have been carefully pulling strength from roll models, you qualify! I have been reading about  saunas, thank you for posting all of this, it gives me something to reflect on.

Lisa

Sisters three's picture
Sisters three
Posts: 149
Joined: Nov 2012

Name: Lisa

Locaton:Charlotte, NC

Diagnosis: Endometrioid Adenocarcinoma Figo Grade 2- (11-19-12 diagnosed through Endometrial Biopsy)

                CT scan shows nothing 

                Scheduled surgery is January 7th  ( wait was due to Husbands need for immediate surgery for aortic anurysms)

Symptoms were spotting for several months off and on after becoming post menopause.

After surgery I will update with new findings based on pathology. I'm working on an out come where the GYN/Onco

says oops sorry you don't have cancer at all!!!!!!!  :-)

                

Roena's picture
Roena
Posts: 20
Joined: Dec 2012

I'm in Monroe but make the trek to Charlotte to LCCI as needed.  Got my fingers crossed for your wish.

beila
Posts: 97
Joined: Sep 2012

Sara

I cant get over your strength & energy through all this!!!!!

I am on Doxil and in bed for most of the cycle

How do you do all that travelling ???

You are indeed an inspiration

My initial Carbo/Taxol did not work...aside from some fatigue, breezed through it, but it was ineffective

Made 2 visits to Cuba to visit my hubby who lives in Colombia (this is another story), but this time on Doxil, can barely get outa bed, let alone travel

Will be finished Doxil by March, and hope to meet him in Cuba (I live in Canada) then...hopefully the Doxil will have been successful...if not, inspired by you, and others on this site, on to the next option, whatever that may be.......but preceded by visit with hubby

 

Thank you for being a positive role model and inspiration.....it helps me alot to think that in just a couple of months, regardless of the next step in this wonderful "journey", I will be lying in my husband's arms on the beach!

Are you being treated in Israel or NY?

An oncologist at NYU, where I used to work as an ER MD,  recomended Doxil and Avastin when my 1st line chemo was ineffective, so that is what I am on.....treated at Princess Margaret Hospital here in Toronto

All the best to you and please tell me your energy secrets

SHANA TOVA,

Beila

Sara Zipora's picture
Sara Zipora
Posts: 227
Joined: Sep 2010

Dear Beila,

When I Doxiled I read Linda, z'l, May she RIP, stuff on Doxil like the Holy Grail, you can still find it in archives. I bought fuzzy crocks for winter, tights without feet, all to watch my feet from getting neuropathy. Still got a it bit, but not too bad, feel toes But go to pedicures once a month at least to make sure I don't miss ingrown toe nails.

 

Also follow Servan Screiberer diet rigidly and olive oil, Tumeric and freshly ground black pepper in fry pan before I cook or stir fry vegs or anything. And I mean anything including whole wheat toast!

Eat frest small fish like sardines, something known here as Barbunia, kinda reddish fish on idea that the smaller the fish the less fish it ate that was in mercury filled water, As farmed fish, also lamb which are grass fed and goat cheese, same idea.

Pretty much stick to Mediterranean diet which ain't too hard here in mediteranian country but caught On in usa of late too.

Listen to your body. I find tiredness doesn't come gradually but as a steep cliff, no time to feel it coming, energy then, gone. Have a futon in my office to take a nap. That helps.

also I know I don't know anything, but neither do docs, so we aren't alone!  We are all cases of one.

This ain't Disneyland but it is our ride, so make the best of it.

Love and good health and 'tidings', what does that mean anyway? To all,

Sara

NJZ62
Posts: 32
Joined: Sep 2012

Original Dx: Adenocarcinoma Sept 2010, TAH Oct 2010, plus 3 internal rads

Recurrence: Aug. 2012 (no symptoms, found in CT scan for kidney issues)

So, am now Stage 4 mestastasized - small lesions found in lung, liver and omentum

Have done 5 of 6 Carbo-taxol sessions (once every 3 wks)

Side effects a little worse each time, and take longer to go away, but nothing too severe - I'm still working 4 days a week.

Chemo seems to be working. CA 125 was in high 300s when I started, is now in normal range, plus I had ascites and was quite sick before I started chemo, but improved rapidly after 1st round.

 

>>>>Love and good health and 'tidings', what does that mean anyway? To all,

          Sara

"tidings", as in "tidings of comfort and joy" is just an old-fashioned way of saying "news" of informations.

To all on this board, I hope all of us receive good tidings in 2013!

NancyZ

Cary, IL

 

           

 

laura25's picture
laura25
Posts: 157
Joined: Mar 2011

Name- Laura
Age 47
Diagnosed-Jan 19th 2011
Surgery- Total hysterectomy, 1 out of 20 lymphnodes affected.
Chemo Feb 2011 - 8 cycles of carboplatin and taxol every 3 weeks, finished July 2011
No Radiation

Had a very big scare Aug 2012, but turned out to be an infection not cancer. Coming up on 2 year dx mark, this board has been a huge blessing for me.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Norma (Orange, Texas) age to date 62
Born and grew up in New Orleans, Louisiana in the 1950's.
Live in Orange, Texas
Business owner (work 10-12 hrs a day, not bad for an old lady)
diagnosed in August, 2009
staging October, 2009 Uterine Adenocarcinoma Stage IIIC Grade 2
Surgery, Treatment, and follow up M. D. Anderson Cancer Center, Houston, Texas
Dr. Charles Levenbach gyn/oncologist
Going for my 3 year check up in a month. So far NED and so glad of it.
I regret to say that I do not follow a particularly good diet. I do not excercise enough also, mea culpa. I do enjoy life and love running my business even in this down time economically.
I have a wonderful husband who drove me to Houston for all my tests, surgery, and treatments. 4 grown children and one delightful grand-daughter.
Life is good for me. God has been generous and merciful to me.
I check this board daily and pray for the ladies here. Miss the ones that have passed on.
May we all have peace and health.

pipscout
Posts: 22
Joined: Jul 2010

Hi there everyone,

I have been reading here for a few years and really appreciate it!

Teresa, age 52, live in Washington state

Diagnosed May 2010 with unstaged grade 3 endometrial cancer
Had to have a couple of blood transfusions due to critical anemia
Had Da Vinci assisted total hysterectomy June 2010
6 rounds of carboplatin-taxol chemotherapy through fall of 2010
25 rounds of radiation through winter 2010-2011
1 brachytherapy treatment

Recurrence February 2012 as peritoneal carcinomatosis
Took megace through August without result
Began chemotherapy in August with carboplatin and doxil
I've had 4 rounds, and CT scan shows that tumors are shrinking
Will continue with just doxil as a monthly maintenance chemo. My hair has stayed put this time!
I have nausea-dizziness the 3rd-5th day following chemo. The anti nausea drugs work but cause some other uncomfortable bowel problems for me.
I have ongoing fatigue, treated with afternoon naps almost daily.
I have some dryness with my hands-treating with bag balm. I avoid submerging hands and feet in hot water.

I'm also seeing an oncology naturopath and have incorporated supplements: fish oil, curcumin, "marrow plus", d3. I recently started doing Intravenous Vitamin C a few times a month and feel like it gives me and my immunity a boost.
I just got my medical marijuana card and am going to see if it's helpful those days just following chemo.

Trying to eat nutritionally well. Mostly low fat proteins and veggies and fruit. Occasional whole grains. And very dark chocolate!

I've continued to work throughout most - with a bit of flex to my schedule and now working 4 days a week instead of 5. I have a data related job so it's not too physically taxing.

I've been attending a wonderful local cancer support group led by a palliative care social worker. Most of the people are dealing with recurrences and it's so helpful to talk about the associated feelings and issues.

I try to focus on the current day and the love and enjoyment that's available in it.

My daughters helped me to set up a fundraising site at youcaring.com for out of pocket costs and to deal with overstretched credit. I've been overwhelmed with people's generosity. My two adult daughters, boyfriend, workmates and friends have been an amazing support to me.

I read here almost daily and appreciate everything people share here as it helps my journey a lot. Warm thoughts to you all!

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

I was diagnosed with Stage 1a UPSC in March 2008. My treatment involved surgery by a gynecologic oncologist, six rounds of carbo/taxol, and three brachytherapy treatments. In addition, I switched to a primarily vegetarian and anti-inflammatory diet. Many of my posts on an anti-cancer diet can be found on this board.

I've been NED since I finished treatment; and I have been told by my oncologist that in March 2013, my risk of recurrence or of another cancer will be no greater than that of the general public.

I am in disagreement that cancer is ALWAYS a chronic disease, and a review of articles in cancer journals indicates that the word "cure" is being used more and more often. My point is sharing this feeling is to give hope. A cure may not always be probable, but in certain cases, it is possible.

This is my first post in a very long time, although I do read this board every once in a while and think of all of you with great affection.

Jill

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Name: Jan
Age: 55
Location: St Louis
Diagnosed: January, 2009
Stage: IIIC, High grade MMMT uterine, cancer found in 1 pelvic lymph node
Surgery: Total hysterectomy
Treatment: 6 rounds chemo, carbo/taxol, sandwiched between 33 rounds external pelvic radiation
NED since completion of treatments July 2009
Current CA125: 4, according to doc, very reliable to follow
Follow-up: see doc every 6 mos, next appt is January, 2013

Changed my diet and lifestyle, lowered my stress as quit my high-level corp job. Had some lower back issues after completion of treatments which included bulging disc. Completed 3 months of treatments with a chiropractor and have no pain....only on monthly maintenance. Take a lot fewer supplements, directing my needs via my daily food intake.

MY MOTTO -- ENJOY LIFE, IT HAS AN EXPIRATION!!!

Ro10's picture
Ro10
Posts: 1362
Joined: Jan 2009

Name : Roberta
Age: 64
Location: Illinois in summer, Florida in winter
Diagnosed: abnormal PAP 10/08 Highly suggestive of adenocarcinoma
Had colposcopy - showed adenocarcinoma
1/09 DaVinci surgery - total hysterectomy - UPSC Stage 3-C 5 of 25 nodes positive' abdominal washing also positive

Treatment: sandwich treatment of 3 taxol/ carboplatin with 28 external radiation treatments and a 28 hour internal radiation treatment followed with 3 more chemo treatments. CA125 - 14 after treatment. Had reaction to taxol with first treatment, so taxol is given over 5 hours each time.

Immediately after chemo was stopped CA 125 began to rise. Dr. Said it is just a number, and does not treat until symptoms appear or CAT scan shows changes.

Recurrence: 18 months after completely first treatment. Lymph nodes enlarged on CAT scan. Had 3 taxol/ Carbo treatments. Then had severe allergic reaction to carbo. Switched to taxol/cisplatin. Had 4 more treatments. CA125 1740 before treatment and 43.5 after treatment.

2nd recurrence- 7 months after finishing treatment. Lymph nodes enlarged on CAT scan. Had 6 treatments of taxol/cisplatin. CA 125 - 3240 before treatment and 60 after treatment. Developed blood clots in lungs, so started on daily blood thinner shots.

Current status: taking Aromasin and blood thinner shots. More than 6 months since last chemo so will be able to
Go back on taxol/cisplatin when needed.

Ca125- currently 360, but CAT scan stable. No symptoms, but never had any symptoms even before diagnosis.

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

Good to hear from you!

plantlady2012
Posts: 49
Joined: Dec 2012

Age 55 at diagnosis, now age 56
Diagnosed in July 2011
Davinci surgery August 2011, removed everything and a few para-aortic lymph nodes
2nd surgery in later August 2011 to repair vaginal cuff (stitches didn't hold).
15 rounds of Carboplatin/Taxotere (Yes, Fifteen! It took a Year!)
I was allergic to Taxol.

Last treatment was early October, 2012 (having begun in November 2011).
Next-to-Last PET scan showed no unusual SUV's. but some lymph nodes still enlarged, so treatment was continued for three more rounds to be sure.
Most Recent PET scan showed lymph nodes smaller, but one hot spot.
CT-guided needle biopsy of the lymph node that lit up came back negative. They told me it might have been an infection. Let's hope so!
Next scan is in mid-January 2013.

In November, I consulted with an alternative doctor and got a chemo sensitivity blood test, which gave me some recommendations for supplements that I am still in the process of implementing. (Vitamin C, Curcumin, Quercetin, Lycopene, and low-dose naltrexone, perhaps others). So far I have only started on the Vitamin C, but haven't talked to him about dosage, yet. I get lots of curcumin, quercetin and lycopene in my diet, but plan to find good supplements, too. Any recommendations??

Shortly after I was diagnosed in August 2011, my general practitioner recommended a book to me, called Anti-Cancer: A New Way of Life. I have followed it's dietary recommendations, started exercising, but for some reason find it difficult to meditate and visualize. Still trying! The dietary changes have resulted in a weight loss of 170 pounds since then!! I don't even recognize myself in the mirror!

I am currently on a plant-based diet, with LOTS of vegetables, and have started juicing vegetables, as well.

--Lynn

HellieC
Posts: 428
Joined: Nov 2010

September 2001 - D&C for abnormal uterine bleeding. Diagnosis - Atypical hyperplasia (suspicion of cancer).
October 2001 - TAH/BSO performed. No other abnormalities found (assumed everything abnormal removed during D&C). No further follow up required.
December 2007 (7 years after surgery) - recurrence at vaginal vault. Treated with pelvic radiotherapy.
June 2010 - further vault recurrence. Treated with surgical resection and sigmoid colectomy followed by 6 cycles of carbo/taxol chemotherapy.
June 2012 - recurrence - two tumours, one at left pelvic sidewall and one on right of pelvis. Surgery not possible due to location of tumours. Currently on hormone therapy - aromatase inhibitor, Letrozole (Femara). Tumours shrinking (right side no longer visible, left side shrinking). Hooray!

Ladies - this is a beast of a disease and I still wonder how I got here following a hysterectomy which found no cancer! But I am still here, delighted that I am getting a response to the hormones for now and enjoying every day!

Helen

Double Whammy's picture
Double Whammy
Posts: 2268
Joined: Jun 2010

The "garden variety/old lady" endometrial cancer. 2 1/2 years post surgery, no adjuvant treatments, doing great as expected.

65 years old and counting.
Dx'd at 62.
Endometrial cells found on routine pap smear. Endo biopsy showed complex atypical hyperplasia with areas suspicious for adenocarcinoma. Off to the gyn onc. Turned out those suspicious cells were cancer, but early stage, low grade. Tumor was 3 cm happily thriving in a polyp. 3 cm is not considered big, but under 2 cm is considered small, so 17 nodes removed and pelvic wash done. All good.

Had my routine mammo when I scheduled pelvic ultrasound following abnormal pap. Mammo showed a suspicious area. Biopsy confirmed invasive ductal carcinoma, grade 2, ER/PR+, HER-2 neg. This dx came 4 days after endo cancer dx. 2010 was quite a busy year!

They tell me estrogen is not my friend anymore (it sure used to be!). The biology of my bc proved to have a high rate of recurrence and surgical pathology showed I also had extensive high grade ductal carcinoma in situ, so I had chemotherapy, radiation and now take Arimidex.

I consider myself very very fortunate to have discovered and treated 2 primary cancers that to date show no evidence of living anywhere other than their initial sites - which were removed.

Happy holidays to everyone!

Suzanne

txtrisha55's picture
txtrisha55
Posts: 423
Joined: Apr 2011

Trish in Dallas Texas 55 at DX Stage III C1 MMMT (carcinoma sarcoma 1A tumor in Uterus, 2 microscopic cells 1 lymph node) High Grade 3 cancer so upgraded to stage 3c1.
Post-Menopausal in 1992 at age 36. In 2004 spotting had D& C everything clear.
In 2008 Daughter moved home and had my grandson, William, when she started again, so did me and my sister. Continued every month for a year then stopped again.
Yearly Pap’s clear & normal and Colonoscopy in Sep 2010 clear and normal.
March 7, 2011 started flooding and intense pain. Went to gyn she performed another D&C with hsytoscopy March 25. She (the gyn dr) said that it looked nasty in the uterus and that it was sent to pathology.
April 1, 2011 got the call from the dr that the pathology report was back and it was cancer. She was scheduling an appointment Monday 4 April with gyn onc at the cancer center. Dr. Jayanthi Lea at UT Southwestern Medical Center was a God send and remains my onc doctor today. She is patient and caring and takes time to explain everything. Great dr so lucky she was chosen for me because I was clueless. April 8, total abdominal hysterectomy with everything removed. May 6, started carbo/taxol for 6 rounds, one every 21 days. Dr said no radiation because she had removed it all so there was nothing to radiate, and would save that in case it comes back. I did ok on the treatments, went back to work, took off on treatment days. Last TX was 22 Aug 11. Only side effect was hair loss but it grew back. 16 months NED. Still go to the Dr every 3 months for checkups and blood work CA 125 was 15 before surgery now down to 11, so do not think that CA is a good marker for me but still does the test. Found this site and have gained a lot of information and guidance from it. Do not post that much but do come and keep updated on everyone. I keep everyone on this site and the whole ACS CSN Boards in my prayers. I have a surgical hernia that I need to have taking care of but was told it can wait so I am waiting a bit longer maybe 2013 I will get it taken care of. It is not bothering me so I will wait.

One thing I learned from all of this is to keep a positive attitude. I went into this journey as OK, I have cancer, let’s take care of it, get it out, get the treatments and move on. I found out that I was stronger than I thought I was. Yes I had a few bad days but on the whole it was positive, even Dr Lea has been impressed with my attitude and tells me that every time she sees me. I have changed some of my diet and exercise more and I do take supplements but mostly I just take every day, one day at a time. Back at work full time and take off days to spend with my grandson and my friends.
trish

ConnieSW's picture
ConnieSW
Posts: 545
Joined: Jun 2012

Name : Connie
Age: 66. Dx at 65, a few months after I retired.
Location: sandwiched between Lake Champlain, Adirondack Park and Canadian border
Diagnosis: sudden onset foul smelling, watery discharge, pink tinged twice. Since I am a nurse, the familar odor convinced me it was cancer. My gyn didn't agree, and treated me for atrophic vaginitis. My first mistake: I accepted that dx inspite of the fact that I have always advised my patients that they live in their bodies and know them best. Luckily, she did a pap and abnormal cells showed up. A bx followed and she prepared me for a cancer dx but felt it was early and surgery would be the only treatment needed. She referred me to a gyn/ onc. When I called to get the bx path report, I was told it wasn't ready and had been forwarded to the hospital in Burlington, Vt. That did not sound good to me. The following Sunday the gyn/ onc called me and said that although my appt with him wasnt till the following Wed, he would like to schedule me for surgery on Fri. That didn't sound so good, either. By Wed I had down some research so wasn't shocked when he told me I had UPSC and would need surgery, chem, radiation
Tx: laparoscopic surgery the end of March this year, chemo ( the standard) completed Aug. 15, brachytherapy in Oct. for UPSC 1a, grade 3. My first scan was NED.
Now: I bounced back fast and my only reminders are a bit of neuropathy in my toes, my Jamie Lee Curtis hair, and the port. My doc says let's take the port out. I vacillate. I am eating better, getting lots of exercise, plan to start tai chi in Jan. My goal is to give my grandaughter and grandson their gram for as long as I can.

cheerful
Posts: 115
Joined: Apr 2011

Surgery: February 1, 2011 - Hysterectomy done by Gyn at Crozer-Chester Medical Center, Upland, PA - had 6 months of bleeding

Diagnosed: February 23, 2011 by Oncologist

Age at Diagnosis: February 23, 2011 - 59

Age Now: Dec. 2012 - age 61

Stage 1 UPSC, 5 Centimeter Large Polyp

Treatment: 6 rounds of Carboplatin/Taxol - started in April, 2011, completed end of August, 2011, 3 rounds of brachytherapy in late Sept./mid October, 2011 - while going through treatment had great support from family and friends

CA 125: No. 7 as of October, 2012

Latest Cat Scan: November, 2012 - No Evidence of Disease for which I am very thankful and grateful - and am happy and glad to still be alive! I am enjoying my life and appreciate each and every day that I have as cancer does change you

I see Oncologist again in April, 2013 - will now see him 2x a year in the future whereas this year 2012 saw him 3x.

I live outside of Phila., PA suburbs in Delaware County, PA

Hybridspirits's picture
Hybridspirits
Posts: 144
Joined: Nov 2012

Name:  Sharon

Age: 54

Location:  South Windsor, Ct

Diagnosed:  official pathology done at surgery on 12/12/12, Stage 1A MMMT

Surgery: total hysterctomy,  had upwards of 61 nodes taken

Treatment - in process of determining.  .  Tumor board reviewed case and felt was good candidate for trial of just chemo given total containment to tumor and minimal invasion of uterine. Going to Dana Farber on 12/28/2012 for second opinion and their thoughts on this.  Dr's awaiting this appt and than will meet with Medical oncologist, radiologist and as a team decide traditional (chemo/radiation/chemo) or trial of 6 rounds of radiation.  More to come. 

 

I am in the process of changing my lifestyle.  I have a high level corporate job that can bring on stress.  Will need to approach this differently going forward, boss very supportive.  Have changed up my diet to be more cognizant of what I eat and why.  Read the Anti Cancer book and fods to fight cancer and have learned a lot.  Feel so much better with the way I am eating.  I am hopiing to add more relaxation and "me time" into my life through possibly meditation or yoga or even taking time to knit or read a book.  Overall hoping to get back out soon back on my bicycle leading rides.

 

thanks to all that are members here that have helped me stay positive and know I can beat this!

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

Age: 39 (38 at diagnosis)
Went to gyno at least 4 times complaining until she finally did a biopsy.
Diagnosed Oct. 5th, 2011 with grade 3 adenocarcinoma
Surgery was Oct. 28th, 2011 at University of Washington
Stage 2b, grade 3, outer 3rd invasion, LVSI = high risk of recurrence
1 taxol/carbo. Horrible reaction to taxol.
2 carbo only
3 carbo/taxotere
25 extended field radiation b/c my uterus ripped during surgery as gyno/onc was trying to remove scar tissue from my c-sections.
3 brachytherapy
Positive Lynch Syndrome
Complications: infected port resulted in sepsis and a blood clot in my jugular vein which is completely closed off and will be for the rest of my life. Not to mention my horrible reaction to Taxol which landed me in the hospital last Christmas.
Last pet was Nov. 30th, all clear.

All of this is terrible, but I am not complaining. So far, so good, for me. It has been 14 months since that awful tumor was taken out of me and I have remained NED thus far. I know I would not be alive today if I would have waited any longer, I should say forced to wait any longer. I'm in good hands now and for that I am thankful. This Christmas has been much, much better than last year. Thanks to you all for your support and open discussion here. It has helped me through so many dark days.

SUNGRANNY
Posts: 74
Joined: Dec 2012
CSN Name: Sungranny
Age:           65
How and when did you learn about your cancer?
I had vaginal bleeding, October, 2012. Gyn did an endometrial biopsy, and it was positive for High Grade Serous Endometrial Adenocarcinoma.
Surgery -
Since CT scan showed swollen lymph nodes, surgeon said rather than minimally invasive surgery, I needed an abdominal hysterectomy with tubes and ovaries removed and lymph node dissection.

Surgery 11/21/12 revealed serous cells - : uterine tumor (10x7x6 cm),  nodule on the bladder (which wasn't identified on the CT Scan), on both ovaries,  in the cervix (identified on the PAP smear), and 9 of 20 lymph nodes -malignant pelvic lymph nodes in the right obturator space as well as a left external iliac space as well as bulky periaortic lymph nodes up to the level of the renal vasculature.

Diagnosis: metastatic high-grade serous adenocarcinoma; Stage 4 Serous Endometrial Cancer.
Pre-surgical prep that I think helped with the recuperation from surgery:
I used Peggy Huddleston's "Prepare for Surgery and Relaxation" tape before and during surgery (Ipod). For 3 weeks pre-surgery did treadmill and exercises to strengthen my arms, legs,  core muscles followed by a high-protein shake.

Support from family and friends was huge.

Treatment plan:
My gyn-oncologist at Duke Medical Center is recommending 6 chemo treatments of Carboplatin and Taxol. If the lymph nodes that were not removed are better or stable, she would then recommend radiation. The treatments would be 3 weeks apart, starting in January, 2013 with weekly bloodwork.  After receiving the stage 4 diagnosis, I sent my records to Memorial Sloan Kettering. They reviewed, and said I am not eligible for any clinical trials and concur with my gyn-onc's treatment plan.
Nutrition:  I am more or less following Servan-Schriver's Anti-Cancer recommendations.  Mostly organic plant-based foods, supplemented with wild caught fish, grass fed beef,  eggs (from free range chickens), and free range poultry.  NO white flour or sugar, rare cup of coffee.  Added green tea, increasing tumeric.
CHEMO PREP - planning to record a guided relaxation/visualization to listen to during chemo treatments, keep walking, and add yoga as soon as the abdominal surgery is healed.  I'm working on the meditation and sleep portions of my healing plan.
I'm planning to return to work before the 1st chemo treatment, and work as close to full time as possible during treatments.
Hardest part so far:  In the recovery room the doc told me the results, and the stage 4 diagnosis.  I realized that my husband and son were in the waiting room and had already heard the news.  I hated that they were hit by that information.
Lessons learned:
Appreciate the people in my life and the time with them. Enjoy the little things, like a lovely tree, the sky and sun, or a kiss from my grandchild.
I am humbled by the love and support from family and friends, this listserve.
Thanks all.
SG
 
eastmountaingirl's picture
eastmountaingirl
Posts: 2
Joined: Mar 2012
eastmountaingirl's picture

Sorry for the cut and paste, but didn't want to re-type it all!  Have been updating my profile since March, but have never posted on forum.  Have laughed and cried over many of these posts.  So glad to be here. Smile

 

Joined on

Thursday, March 08 2012
Last online
Wednesday, December 26 2012
Gender
female
Age Range
50-59
How and when did you learn about your cancer?
Almost every time I ate anything, my stomach bloated. Thought I had digestion problems. Finally went in for Pap and overall exam in Jan 2012. CT scan and ultrasound were suspicious for cancer. Appt with gyn-onc in Feb 2012. Had total hysterectomy, bilateral salpingo-oophorectomy, complete omentectomy, radical tumor debulking, and rectosigmoid resection the following week. Was diagnosed with Uterine Papillary Serous Carcinoma (UPSC), stage 4b.
What types of treatment(s) have occurred?
Debulking surgery, as described above. Carboplatin and paclitaxel, one day every 3 weeks, for 6 rounds. 

Completed treatments on 6/28/12. CA-125 levels went from 120 to 7. 

CA-125 level down to 6 on 7/20/12! CT-scan on 7/20/12 looked good, except for ascites near liver and thickened lining near liver. Had paracentesis on 8/2/12, but fluid had apparently shrunk and could not extract any fluid. Doctor took this as a good sign. 

CA-125 level on 9/18/12 was the same as previous check -- 6! Will get it checked again in December.

Turned 50 in October. 

Hair has grown a lot. Is curly now! "Salt & Pepper"

Had mammogram on 12/6/12 because of lump I found. Felt similar to lump of 3 years ago which turned out to be, after biopsy, a complicated but benign cyst. Mammo was negative for cancer! Am positive for BRCA-1 gene mutation which gives me high risk for breast cancer also, so this is good news.

CA-125 level on 12/19/12 was 21. Bit of a jump, so am scheduled for CT-scan on 1/7/13 with doctor appt on 1/10/13.  Eldest daughter has appt with genetics counselor on same day to get tested for BRCA-1 gene mutation.  She is 21 and getting married in March.

What have been the most important things that have helped you through your survivorship?
Friends and family that care and pray for me. My faith in God.

 

 

 

 

SettledSue
Posts: 18
Joined: May 2012

I was diagnosed 3/28/12 and had my surgery 4/2/12. I had the long vertical incision with removal of uterus, cervix, ovaries and tubes, 33 lymph nodes, part of my omemtum, and had the abdominal wash. Grade 3, clear cell, Stage 2

Had 3 brachtherapy treatments and six rounds of taxol and carboplatin. Had clear CT scan a month after last chemo. Am now slowly growing my hair back. 

Susan (I live in NJ)

 

 

 

Camilla52's picture
Camilla52
Posts: 1
Joined: Dec 2012

I'm new to this forum as of today.  I live in Ireland and haven't been able to connect with anyone with UPSC here. My story is similar to yours Caroline, I've got Stage 3C and have finished treatment, having had chemotherapy 6 sessions and brachy type radium 3 sessions. Got the all clear in September and am due another scan in January or February. I'm not sure if some of the previous details I submitted will come up automaticly or not.  Its just helpful to see other people out there with this type of cancer I dont feel as alone.  Take Care.

eastmountaingirl's picture
eastmountaingirl
Posts: 2
Joined: Mar 2012

Thank you, Camilla52, for your reply.  I only have a few minutes to answer right now.  Please keep us updated on the results of your next scan and I will do the same.  Yes, it is good to know you are not alone, but I hate that anyone has to have this.  I am up and down in my emotions. Of course lack of hormones doesn't help. And lack of sleep because of night sweats.... Anyhow, I will pray for you and the other ladies.  Have to go for now.  Happy New Year! Hugs and blessings.  Caroline ❤

artist49
Posts: 43
Joined: Oct 2011

Age: 63

Location: New Jersey

Diagnosis:  UPSC stage 4B grade 3 with cancer found in all 39 lymph nodes tested

                 Diagnosed September 21, 2010   at Sloan after  surgery that  removed everything (optimal debulking)  and there was LOTS to remove

Treatment: Entered clinical trial at Sloan in November 2010.  Carbo platin, Ixabepilone, and  Avastin once every three weeks for 6 treatments and then continued

                 with Avastin alone every three weeks for maintenance. Will remain on the Avastin till sign of recurrence according to rules of clinical trial. CA125  remains at 3.

Current status: still NED  as of last week's cat scan

Genetic status: just tested positive for BRCA 2 mutation

Diet: No meat, poultry,  sugar or dairy. Minimal fruit and grains.  Almost everything organic. Mostly eat all veggies( except white potatoes), wild caught salmon, organic

        eggwhites, seeds, nuts , gluten free whole grain bread, and as many fermented foods as possible. Have a smoothie with black raspberries and freshly ground flaxseed

(and other        ingredients)  every single day.  Apple cider vinegar (raw), raw honey and garlic blend every day   great for insulin resistance.

Exercise: Walk for an hour carrying little weights every day

Current  feelings: Life seems so normal now that many days I actually sort of forget about the disease.  A recurrence (which statistics say is inevitable) would now be

                          devastating to deal with as I truly know what it means to have my life back.

Focus of life now: retired and enjoying my husband, children, many grandchildren, hobbies and all the wonderful people in the retirement community where we just moved to.

Message  to everyone: Blood tests show that I have really changed the terrain in my body with my restricted diet. Especially important  I think is the level of insulin and

insulin-like growth factor.  The above diet  seems to be working to keep the levels of these hormones low.

Roena's picture
Roena
Posts: 20
Joined: Dec 2012

Good morning,

Still trying to figure out how to navigate this siteEmbarassed.  DX with endometrial stage IV as of March, 2012.  Sailed through 6 rounds of taxol, carboplatin with minimal inconvenience and CA125 went from 917 post SX to normal!  Yay, you say.  First PET/CT at end of chemo cycles were fine and dandy.  Three months later (December), it's baaaccckkk.  CA125 shot up to 314 and the CT scan showed subtle changes in pelvic lymph nodes.  My oncologist and surgeon put their heads together and decided that because of very late stage DX, "cure" was out of the question but there was every hope for remission (again) using Gemzar and Carboplatin (I'm not a candidate for Cisplatin for other reasons).  Oncologist said it was a gut punch for everyone.  The only symptom I had was swelling in the abdomen - ascites - but as an overweight person, I attributed this to just being fat.  When I looked as if I were in my 9th month, it got scary and I had tests and the DX was made.  After the initial surgery I had to have over 3000 mL of fluid drawn off due to ascites.  My surgeon told my family that he got what he could, 95%, and it was miscroscopically invasive but chemo would take care of that.  Obviously not. I know I'm not alone out here.  I feel fine and am actually looking forward to the next rounds of chemo. 

DanielleyMe's picture
DanielleyMe
Posts: 4
Joined: Dec 2012

Name- Danielle

Age- 21

Story-

Hi *waves timidly* My name is Danielle but you can call me Dani. In May 2012 i was Diagnosed with Uterine Cancer. It was a rare form to be found in someone my age (20 at the time) and it was agressive. I had a hysterectomy(pardon my spelling) and found out the staging was Stage 1 b because the tumor was over 50% through my uterine wall. I then spent my entire summer receiving chemo. I am now in remission and i came on here because, now that all is said and done..I'm not coping as well as i hoped i would be.

is that normal? To feel almost hopelessly depressed after finally reaching remission? During my chemo, i had a lot of really scary things happen. I was on a clinical trail and it really messed with my head. I was a nervous wreck and everything was just terrible...now that it is over...I feel like i haven't really coped with what has happened to me. I don't know what to do.

Sisters three's picture
Sisters three
Posts: 149
Joined: Nov 2012

I wish you lived next door to me so I could go hug you. I wish all of us ladies lived close by each other and could have a Dani Party today. There could be chocolate!  

Danny, I'm a newbie and haven't even had my surgery yet, but welcome to the "ladies summer house!" That paints a nice picture for 

young and not quite as young!

Lisa

Hybridspirits's picture
Hybridspirits
Posts: 144
Joined: Nov 2012

Dani

I too wish I was close enough to run over and give you a hug. And wow a Dani party this weekend would have been fun.  Maybe we could have a cyber one!

 I am in Ct, so let me know if I am any where's close.  I am not a sleeper as can be attested by my daughter a little older than you who calls me all hours of the night to talk.   I love to talk and listen.   I am here, just a few steps behind you.

You are so young to have to go through this.  Similar to Sister's three I am also a newbee.  I have had my surgery but working through the treatment plan but have found wonderful support from the ladies here from all over the world.  I did find that once I reached out to someone I knew who had gone through what I am in the process of,  talking directly to someone who really did understand, was so comforting.

Dani, I was at Dana Farber Institute in Boston yesterday and there was an entire newsletter devoted to young adults similar to you who have had or in the process of going through what you have had to endure so far.  They have recently put together young adult's with cancer support groups to address the issues that are very specific to  young adults.  The results reported to date have been wonderful.  Maybe this is something you might find close to your home

Hugs from a far and thoughts always,  TTL

Sharon

 

 

 

plantlady2012
Posts: 49
Joined: Dec 2012

Dani, you have been through a traumatic experience, at a young age.  I think some kind of emotional fallout can be expected!  Reaching out to others here is a good step.  Everyone needs support!  Your doctor's office might know of local support groups, or be able to recommend some counseling, if this is interfering with your life.  I am so sorry you had some scary things happen to you in chemo!  I read a book called Spinning Straw Into Gold, which was actually written for women with breast cancer, but there are similarities in the emotional reactions.  The author said it was not uncommon for women to experience crying "for no reason", AFTER completing treatment successfully.  Be gentle with yourself!

hugs from Lynn

SUNGRANNY
Posts: 74
Joined: Dec 2012

Dear Dani,

I hope that since your post you have found some support through online or in-person support groups.  Use all the resources available to you.  Physically and emotionally you have gone through so much; it is no wonder that you feel terrible.  Making it this far means you are coping, and coped as well as you could at the time.

Cyberhugs to you,

Sungranny

NoTimeForCancer
Posts: 412
Joined: Mar 2013

Dani,

You are so young to have to deal with all thiss craziness called cancer.  I was 49 when I was diagnosed, just a few years older, Smile and STILL cannot wrap my head around having had cancer, and can't imagine what I would be thinking if I had been told this at your age! 

My favorite place to cry, and I still do occasionally, is in the shower where the water can just wash them all down the drain.

Please know you are not alone.  You have many sisters out here who would love to reach out and hug you, but please do not try and deal with this on your own.  Find someone who can listen to you.  If you were in the clinical trial reach back out to them to help you find someone you can talk to. 

I know all of us who have read your post are thinking and praying for you.  Please don't hesitate to reach out to this group.

janh_in_ontario
Posts: 109
Joined: Sep 2010

Name: Jan
Age: 50

Location: Toronto
Diagnosed: Sept 15, 2010
Stage: never officially told - assumed to be 1a or 1b as no further treatments were required after surgery
Grade: 2

Surgery: Total hysterectomy
Treatment: none

Have had some pain (mild to medium intensity) in the left side - same as it used to be when I had my period - but according to Drs all is ok. Had an MRI and the results showed no worrisome masses. It did show a hernia which I knew was there - but Dr said not to worry about that.

I am thankful that I have found this site - it prepared me for Doctor's visits and encouraged me when I needed it.

If anyone is in the Toronto area and would like to chat ping me!

JanH

CindyGSD's picture
CindyGSD
Posts: 191
Joined: Aug 2011

Diagnosed July 2011 at 46 after a period of heavy bleeding.

After completely hysterectomy, received 6 rounds of Ifosfamide/Taxol over a 3 day period ever 3 weeks with 25 rounds of pelvic radiation sandwiched between chemo treatments.   Experienced no major side effects from either the chemo or the radiation and worked full time throughout.

Last treatment March 2012 and celebrated by taking a camping trip to Montana with one of my dogs.

Currently NED and other than a panic attack around the time of my six month CT scan, I seldom worry about a reoccurence; not because I believe it can't happen, but because there is nothing I can do about it if it does.

Take care all!

Cindy

DoonyL7
Posts: 33
Joined: Sep 2012

Dx July 2012

location Az

Surgery  Had all female organs, omentum and appendix removed peritineal fluild positve for cancer, none found in any of lymph nodes

Stage 3A Grade 3

Treatment Had 3 rounds of taxol/carboplatin, followed by weeks of raditation and 3 internal radiations...now that was fun

Set to do another round of taxol/carboplatin in Jan.

Chemo was ok, hair was gone after 1st treatment. Radiation was another story. Made me very sick, lots of time on the toitity. I had no apetite at all. I eat to stay alive. I have lost 12lbs during treatment. My radiation oncologist says chemo will be worse this time.  Oh well another couple months and I will be done. CA 125 has been slightly elavated. Hoping this is result of radiation messing things up.

SerenitySeeker
Posts: 1
Joined: Dec 2012

Hi everyone! I'm new to this board and my story is very long so I'll give you a quick abridged version.

Dec. 2007-diagnosed with stage 2B Endometiral Cancer-partial hysterectomy,25 external beam radiation treatments, 3 brachytherapy

Oct 2009-1st recurrence-Da Vinci surgery to complete hysterectomy, 4 rounds chemo-Taxotere and Carpoplatin

June 2012-gall bladder surgery at which time my surgeon discovered nodules in the pelvic area (2nd recurrence). Currently undergoing chemo-completed 6 rounds Taxotere/Carboplatin which caused neuropathy so I'm now taking Doxil every 28 days. The tumors have reduced in size but have not disapperared as hoped.

I'd love to hear from any of you who have a similar diagnosis.

icare46nu
Posts: 7
Joined: Jan 2013

 I tend to put off anything medical. My menstrual life has always been unusual with irregular, heavy and lengthy cycles while filled with pain and fatigue.  My peri menopause was sketchy as to its progress and in 2009, I actually went to the ED because I was hemorrhaging abnormally for me. An ultrasound was 'normal' showing nothing significant. I did not follow up with a GYN. I now wonder if that was an early symptom? In the last 3 years, I have had months of nothing or a little discharge/leaking but for the past 8 months that discharge has been everyday and often with pink color; nothing near what a period looks like. I thought "you never do anything normal so, this is your body's going into menopause, just wait it out." My husband went out of work and our insurance was about to end; thought going into my general doctor might be a good idea to verify all was "normal" just different way of doing things. Exam and PAP and blood work all normal except in the high normal for Cholesterol. He referred me to a GYN. She ordered ultrasound; based on it, we decided on D&C with possible polyp removal. Needless, no polyps and D&C did not end my symptoms. She spoke with my husband and alerted us to consider which treatment hospital (we have several good research/treatment programs in our area) we would like to use as she was fairly certain she was looking at cancer. A week later it was confirmed.

I know surgery is upcoming--oncologist surgeon on Wed. So many questions! Many are answered here and at the CDC site but, a lot of personal and reactive questions that I have, I have not seen here. I have been handling things in a very systematic and pragmatic way. I do not believe it is denial but I am not totally devastated. I am not as experienced with this disease as I am with heart, stroke and diabetes. Because of my family's history of early sudden death by heart issues, to me that is a SCARY and devastating diagnosis. Generally, Cancer doesn't "run" in my family and my doctor has said to me, " We caught this early, you are grade 1. We can get the uterus out of there and the 'cure rate' is very good." Reading stories here has shown me that it can be scary but, I think I am more scared of the "cure"/ treatments and amount of treatments. I am really not sure that I want to go through anything other than the surgery. I don't see anything here about that decision and how others have come to terms with their own decision either way. It is overwhelming to me

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

Hi Icare, sorry you are here, but we try to take care of each other.  A lot depends on the KIND of cancer,the stage and grade(after surgery). I was 1a, but grade c(aggressive)and poorly differentiated(not good).  I wasn't really given a choice of treatment for my UPSC.  It was either everything or goodbye.  I had a total, radical hysterectomy,full belly open and everthing but nodes taken out.  Six rounds of Taxol/Carboplatin and five rounds of internal radiation.  Not easy, but doable.  I am 32 months out of treatment and doing well,thank God.  You are getting ahead of yourself.  Wait til after surgery when all the results are in then make your choise.  There will be plenty of time after surgery to get your head wraped around everything.  Of course you are overwhelmed....just the diagnosis is like a sucker-punch!   Let us know what we can help you with, ask all the questions you want...we talk about EVERYTHING here!  Best, debrajo

icare46nu
Posts: 7
Joined: Jan 2013

thank you Debrajo. I don't know about getting ahead of myself because I don't I am not a big fan of surprises. When the doctor told my husband that we should think about where we wanted to go for treatment, I did research on all the various uterine cancers. this was helpful when she called with the results, I was able to understand most of what she was saying and even had researched physicians which turned out to be 2 of which she recommended. In the end, she agreed with a physician I had researched and wanted to use. When the oncologists offers up treatments, I want to make an informed choice, so I am researching all the possibilites as well as, the consequences. What I am not able to find is if chemical or harsh treatments or not used, what else is available? What are the physical consequences for delay of treatment? As fara as the coming surgery, how are personal care and relationships affected? bladder and holding urine issues? sexual relations, if the cervix is removed? does the vagina change position or shape? when nothing is in that space, does your intestines/other organs "drop in" to fill the void? does my fat fill the void? Perhaps these are odd questions or there are no anwers. As I said, I am not a big fan of surprises, so I am curious and want to know what to expect. ;-)  I have a wonderful friend that watched her daughter rejoice in her last 8 months and we had cocoa and 4 hours of talking and laughing and crying and hugging today. She helped me have a new perspective on a particular concern I had about the surgery. I can now say I am at peace right now. My appt is tomorrow and I hope my peace and understanding will continue. You seem to have a most positive attitude about your journey and I pray that I can emulate that and learn from you and the other women here. I will check back tonight and in a couple of days. THANK YOU debra! 

icare46nu
Posts: 7
Joined: Jan 2013

sorry for the repeat, slow connection

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network