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ROLL CALL - borrowing from our Ovarian sisters!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 513
Joined: Mar 2013

Fellow warriors!

Let's check-in on eachother!  Give us a brief "hello" and how are you doing for all newbies and long-time (I know you ladies are out there) warriors. I'll start:

DX: April 2012 - UPSC, Stage 1A

Finsished Chemo/radiation/chemo treatment December 19 2012

Doing and feeling great.  Thank you all for your support.

cheerful
Posts: 125
Joined: Apr 2011

Hello to everyone:

 

  I have been a member on this Board since April of 2011. I was diagnosed with UPSC Stage 1 (large polyp 5 centimenters) on February 23, 2011. Had hysterectomy on February 1, 2011.

 

  Started chemo in mid April of 2011 - and finished August 31, 2011 - so it was just 2 years as of today!  Started radiation had 3 rounds on Sept. 29, 2011 and finished radiation - October 14, 2011.

 

  Was very tired from chemo for a long time and took awhile to get my strength back. 

 

  Now doing much, much better - so far with NO evidence of disease as of June 26, 2013 from my latest Cat Scan so it is over 2 years from diagnosis.  I go back and see my oncologist in early October for a 6 month check-up.

 

 

 

Ann55
Posts: 43
Joined: Jun 2013

Not alot of history to report,diagnosed the end of April 2013 very little in the way of symptoms just a scant amount of pink drainage but have a really good primary physician who insisted on a biopsy.UPSC surgery on May 9 5 weeks recovery and have now completed first 3 chemo.Found out after 1st taxol dose I could not take it and was changed to taxotere and continued with carboplatin.Pre-surgery CT was negative and everything looked good but pathology came back with positive pelvic,peri aortic and retro-peritoneal nodes CA 125 has also been negative from the beginning. I am awaiting Pet scan result done last Thursday.Pap was done 3 months post surgery and was negative. I am to start radiation either this week or next week.Plan is for 6 weeks external radiation with 3 internal treatments in the middle then 3 more chemo treatments.So my journey is just beginning,except for the first chemo treatment with the taxol and problems with thrush after both doses of taxotere (which got on my vocal cords,and I had so much I needed to say to my husband) I've felt good so far just tired at times. I have found sharing everyone's experiences very helpful.Stage 3C is my surgical staging number.

survivingsu's picture
survivingsu
Posts: 34
Joined: Apr 2013

Hi everyone,

I'm 54.  I had undifferentiated small cell uterine carcinoma 4 years and 4 months ago.  Completed chemo & radiation (external & internal), and surgery.  Had multpile transfusions because the treatment knocked out my blood counts.  My thyroid was also knocked out.  It all seems so long ago now!  I am doing fine (although I still need to lose weight).  My last C-125 was 7...I'm due for another C-125 in December.

foods55's picture
foods55
Posts: 18
Joined: Jul 2011

Name: Sue

Age: 57

Location: Michigan

Diagnosed: December 2010 with stage 111a Grade 2 Endometrial Adenocarcinoma

Treatment: 2011 Hysterectomy/debulking, 6 rounds carbol/taxol, 5 weeks radiation,  2 internal brachy therapy

Current Status: NED, Next 3-month check up early September

Current CA 125:13

I am feeling better and hope to keep feeling this way.

Kathy G.'s picture
Kathy G.
Posts: 116
Joined: Dec 2012

Hi everyone!

I was diagnosed November 2012 with grade 1 endometrial cancer. Had the DaVinci hysterectomy in January 2013. Staged 1a - grade 1 confirmed.

Only treatment indicated is 3 month check-ups for 3 years. Wil then 'graduate' to 6 month check-ups every 2 years until my 5 year mark.

I don't know if it is my age, weight or combination of things such as a few other minor medical issues, but I am still tired off and on like I began to notice a few years before the surgery. I was really blessed to have such an early diagnosis and recovery!

I have tried to improve my sugar-laden junk food diet which has proven to be a challenge. I do well, and then 'relapse!' It is an ongoing cycle which probably contributes to feeling tired.

This board and ladies have been a true inspiration as one never forgets getting this diagnosis!

Kathy 

debrajo's picture
debrajo
Posts: 786
Joined: Sep 2011

Hi  Everyone, I'm from Texas, dx July two thousand and nine{sorry, keyboard messed up} UPSC 1a six rounds Taxol/Carbo and five branchytheropy.  Finished chemo May two thousand and ten,  Clear since then, Thank God!  No real side affects, but do have panic attacts and deep depression some of the time, but still hear{sp}despite multiple health problems.  God is good and so is this group!  Debrajo

                                                                                                                                                                                                                                                                                                                                                                                                                                                                                               Eb    v

pipscout
Posts: 22
Joined: Jul 2010

Hello all,

 

I have endometrial adenocarcinoma first diagnosed in 2010 with surgery, chemotherapy, radiation and brachytherapy.

My cancer is Grade 3. I had an abdominal recurrance in 2012, which has continued to advance. I've done some courses of hormonal treatment, angiogenesis inhibitors, and rounds of chemo with doxil. Recently I started doing a platinum based chemo again, and am about halfway through the six cycles. 

In addition to treatment I have been trying things like acupuncture, naturopathy, vitamin c infusions. Also have a wonderful local support group and palliative care team. 

I am still working but now only two to three days a week. Working on a disability retirement. I have kept a list of things I want to do when on my treatment breaks. I don't really know if I'll ever be cancer free in the future but hope to make the best of all my "well feeling" days. 

I wish the best to all of you here! Checking in and reading your words helps me! Best, Teresa

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

DX Oct. 2011

Grade 3 , sugical stage 2 but two lymph nodes glowed on follow up scan, so could be 3c

Chemo, external and internal radiation completed July 2012

Lynch Syndrome positive

So far, so good

Best to all,

Rachelle

 

Ro10's picture
Ro10
Posts: 1454
Joined: Jan 2009

Name:  Roberta

Age: 64 for one more month 

Location:  Illinois in summer,  Florida in winter 

Diagnosis:  Abnormal PAp in Oct 2008, Total Abdominal Hysterectomy by DaVinci Robotic Surgery Jan 2009.  Diagnosed with UPSC Stage 3-C.  My doctor told me this cancer could not be cured.bit treated as a chronic disease.  I have never been NED.  As soon as I go off treatment, my CA 125 begins To Rise.  I have never had any symptoms.

Treatment: Sandwich treatment of 3 Taxol/Carbo, 28 external IMRT radiation treatments followed by 28 hour internal treatment, followed by 3 more Taxol/carbo

recurrence 18 months after completion of treatment.  Enlarged lymph nodes found on CAT scan. And CA 125 went to 1700.  Had 3 taxol/carbo.  Had severe reaction to Carbo.  Had 4 treatments of taxol/cisplatin.

Recurrence 7 months after completion of treatment.  enlarged lymph nodes and CA 125 went to 3200.    Had 6 treatments of taxol/cisplatin.

Developed bilateral multiple pulmonary emboli in Jan 2012.  Have been on daily blood thinner shots since then.  Had no symptoms, was found on CAT scan.  

Currently on Aromasin. CA 125 currently 700 but it is rising slowly.  It has been 15 months since my last chemo.  Will have next lab work and see the doctor the end of September.  I continue to try to enjoy each day.

I try to have good nutrition, walk daily and keep a  positive attitude.   Being around positive people helps, too.

may we all continue our journey for many more years.  In peace and caring.

HellieC
Posts: 455
Joined: Nov 2010

Name:  Helen

2001  - Hysterectomy for atypical hyperplasia - no cancer found

2008  - first "recurrence" (how can something recur when they didn't find it first time round?) found at vaginal vault - grade 1 - 6.5 weeks of external pelvic radiotherapy.  Scans at end of therapy showed NED.

2010  - second recurrence found at vaginal vault and wrapped around sigmoid colon. Grade 2. Debulking surgery followed by 6 cycles of taxol/carboplatin chemo. Scans at end of therapy showed NED.

2012  - third recurrence at pelvic sidewall.  surgery not possible.  currently on hormone therapy (Letrozole) which is keeping things stable

Now considered incurable but I am doing and feeling fine.  Next MRI scan due later this week.  Keeping everything crossed that "stable diisease" is still the outcome.

Helen

 

Stabler
Posts: 49
Joined: Feb 2013

Hi ladies,

I was diagnosed November 2012 with grade 1 endometrial cancer. Had the DaVinci hysterectomy on New Year's Eve, December 31st 2012. Only treatment needed. 

I was blessed to have this caught in the very earliest stage.  It was only 10% invasive.  I have 3 month check-ups for 3 years and then graduate' to 6 month check-ups every 2 years until my 5 year mark. 

I am doing good and feel great.  I just went Friday for a check-up and will get results in a few days. Even tho I was blessed to have caught this early, every time I have a checkup my nerves get the best of me, and I'm on pins and needles until I get the results. 

God Bless Each and Everyone of You,

Debbie

sunflash's picture
sunflash
Posts: 156
Joined: Aug 2011

Hello fellow warriors,

I was diagnosed June 17 2011 stage 1a UPSC. Fortunately this was confined to a small polyp......less than 1/2 centimeter.

Chemo was the standard Taxol/Carboplatin, 6 treatments delivered 3 weeks apart.

I'm a teacher and worked through treatment, but took  5 days off for first 3 treatments and a full week for the rest. My sister was my sub!

Feeling very well. My next checkup will be early November which will mark my 2 years post treatment. Still going for checkups every 3 months.No side effects at all from treatment. I exercise and eat healthy, which was the case before cancer.

I had a prior cancer diagnosis in 2007 unrelated to this cancer. My wonderful doctor caught this early as I was still being seen by her every 4 months.

Blessings to all of you here!!

 

lkchapman's picture
lkchapman
Posts: 105
Joined: Jan 2011

I was diagnosed in 2009 with stage 3C UPSC. Just passed my 4 year cancer free mark after 5 weeks chemo/xrt, 3 HD brachy and 6 rounds carbo/taxol. I will see my gyn/onc this month for my last 6 month follow up and then only one more year to 5 years, Yay! Although I've gained a little of my weight back I still feel good.

 

 

 

frodolass
Posts: 29
Joined: Sep 2013

I'm a teacher too and am worried about getting back to work. I haven't yet been cleared to go back to work, it's only 4 weeks since my hysterectomy, but I'm hoping I'll be able to work during chemo. I never considered taking 5 days off. That may actually work for me. I've got a lot of donated sick leave, so it shouldn't be a problem in that department. Thanks for your post!

pinky104
Posts: 78
Joined: Feb 2013

Location:  Upstate (Eastern) New York state

Age:  64 for one more month, like Ro10

Had D&C in March, 2010 to remove a "benign" uterine polyp.  Biopsy showed it was not benign.

Had major surgery 5/11/10 in another hospital.  Diagnosis was UPSC, grade IVb.  Had total hysterectomy and debulking with removal of cancer in uterus, both ovaries, the omentum, and the ilium, and lymph node sampling (all nodes sampled were clear).  Also had cholecystectomy for gallstones and appendectomy during the same surgery (had 2 surgeons working on me).  Veins basically collapsed as I lost a lot of blood, so I had 2 units of blood (with difficulty getting them in) two days after surgery.

Started chemo 6/11/10.  Had 6 rounds of carboplatin and taxol.  Had a brief stint of stomatitis and a minor loss of appetite, but no nausea or vomiting because I started taking Emend a couple of days before chemo. My younger brother, who was expecting me to die, unexpectedly dropped dead himself while I was undergoing chemo (probably a heart attack but no autopsy was required by the state of Maine where he was living when it happened).  Going to his funeral was a problem as I had chemo induced anemia and was still very short of breath.  After I got home from his funeral, I was given another unit of blood.  Months after chemo, when I was still short of breath, I had a ferritin (iron) test at my family physician's office.  It was extremely high. When I next saw my oncologist, he did a genetic test and found that I had a genetic defect which can sometimes cause hemochromatosis.  I underwent several phlebotomies until I got back to normal. 

My most recent CA 125 was 7.9 and has been for the last two visits, and previously was close to that same number.  I had a couple of CT scans in the months after the surgery and an MRI to rule out damage from the high iron levels, but no damage was found.  I do have what is apparently a benign liver cyst.  I follow up every 6 months with my gyn/onc, who did my surgery, and an oncologist at the hospital where I used to work and where I had my chemo, closer to home.  I've had NED ever since chemo ended, thank God.

I retired from my job when my disability ended.  I really think the stress from my job was a big contributing factor in getting cancer.  My mother and grandmother both had breast cancer later in life.  My mother got it the second time around in a different spot in the same breast when she was dealing with a high level of stress in her life.  My father had prostate cancer. All three of these family members were cancer survivors and eventually died from other health problems. I expect that will be the case with me, too.  Hope I'm not jinxing myself by saying that.

I had surgery for an incisional hernia in August, 2012, which has helped with pain I'd had since surgery.  I thought that surgery would be a piece of cake after the other surgery, but it wasn't.  They pumped me full of air for the laparoscopy, which made the opposite side hurt more than the side with the hernia.  I hope I don't ever need abdominal surgery again!

And I hope they discover a cure for these cancers soon so that none of us ever needs to go thru this stuff again!

Double Whammy's picture
Double Whammy
Posts: 2320
Joined: Jun 2010

Name;  Suzanne

Age: 66

Location:  California

Date:  April 2010 diagnosed with both endometrial cancer and breast cancer.  Hysterectomy July 1, 2010 for Stage 1a, Grade 1 endometroid adenocarcinoma.  Size 3 cm, 33% myometrial invasion.  Doing great.

After Care:  No chemo or radiation needed.  Observation only.  I saw gyn/onc every 4 months for 2 years.  Now seeing him every 6 months with only 4 more visits remaining by my reckoning.  Pretty straightforward.

I had breast cancer at the same time and had lumpectomy, chemotherapy and finally radiation.  Now on Tamoxifen.  I see lots of oncology peeps and have been seeing them for 3 years now.  All's weel on that part, too.  It has been quite an experience.

Suzanne  

 

 

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

DX – 1 April 2011 with MMMT cancer cells in a D&C                             Age at DX 55  Age now 57              Still working at least 2 more years maybe 3 years

Surgery – 8 April 2011 – Complete Hysterectomy & Omentum - Stage 3C1 Carcinoma sarcoma (MMMT) Tumor (1A) in uterus 5cm with 0.3 cm invasion of myometrium and 2 microscopic cells in 1 pelvic lymph node

Chemo – Start 6 May 2011 Last 22 August 2011 6 Rounds of Carbo/Taxol – No radiation

CA125 started at 15 went down to 11 stays around 12-13 now.

I talked to both my GynOnc Drs and both told me to stop reading the Internet to get my information including eating tips. I mentioned that on the ACS Uterine Cancer Discussion Board there was discussions concerning diets with sugar, meat, and other foods and drinks. I asked did I need to meet with the Onc nutritionist to discuss all this and change my lifestyle so completely. They said I could go that route but that would not guarantee that the cancer would not come back and that if I wanted to spend the rest of my life eating just vegetables and fruits then go for it. Yes that would be a healthier way to go but would it make me miserable? They both said that I did not go through the surgery and the chemo just to be unhappy but to live my life. There are no guarantees so live your life.  Changed some food intake and exercise more but not consistently. 

Doing ok just past my two year NED mark.  Praying for all the Peach sisters on this site and those that have yet to discover us.  Actually praying for everyone that is touched by any cancer as I have been there and know what they are going through.  Rough Road all the way around.  Keeping a positive attitude is key.  Prayers to all. Trish in Dallas, Texas.

Tresia23's picture
Tresia23
Posts: 75
Joined: Dec 2010

Age 65

Home Australia

2007 January Some post menopausal bleeding. Primary care doc order abdo US concluded no evidence of adnexal masses and no cause found. Diagnosed UTI!

2010 October Slight bleeding again. Saw different primary care doc (female) who order US which concluded thickened endometrium and need for investigation

2010 December Hysteroscopy diagnosed endometrioid cancer.

2010 December Total laporoscopic hysterectomy and salpingo-oopherectomy. Grade 1 endometrial cancer, nuclear cells grade 2 with no lymph involvement. Large tumour with 50% invasion of myometrium

2011 Palpitations, short of breath. Stress echo and Holter monitoring. Pretty good results no issues resulting

2012 Still short of breath. CT lungs and abdo showed nodules tiny in both lungs and liver lesions also very small.

2012 Endoscopy and colonoscopy for investigation of abdo pain. Gastric erosion and polyp on caecum (which was lost so no pathology).

2013 Being monitored six monthly now by gyn/oncologist although had an extra visit recently for new symptoms which turned out to be infection only.

Arthritis taking off. Always an issue for me but since hysterectomy and now two years on I am really noticing it. Have lost weight and no longer have any sugar cravings which is pretty unusual for me but good for the body. I meditate daily, garden, mind grand children and am grateful to be here with my family.

You have all been so brave and thoughtful for everyone here who has posted. I am thankful to be part of this community of sisters.

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

Hello warriors
My name is Crystal
I'm 41
Diagnosed on August 22nd, 2013
Uterine cancer

Thank you all for sharing your stories here.
You are all very brave and strong.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 513
Joined: Mar 2013

tattooedtxgirl, we are sorry you had to find us but welcome to our sisterhood.  Please don't hesitate to ask any questions.  The women here are AMAZING. 

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

NoTimeForCancer... THANK YOU!!
Very glad for a place to share with others who understand.
I'm only a bit over two weeks after my diagnosis...
I'm mentally all over the place.

Thank you again

NoTimeForCancer's picture
NoTimeForCancer
Posts: 513
Joined: Mar 2013

Start with one step a time and remember to BREATHE.  If it is your style, I would recommend having someone with you when you go to your doctor appointments.  My BFF was with me and took lots of notes I couldn't so I could focus my attention on the doctor, you'd be surprised at what you don't remember when you get home.  Write down all your questions and don't be afraid to ask all of them.  Again, come here to ask us all any questions when you need to regarding your surgery, side effects, treatment, recovery, etc...

 

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

I've done this with my appts... My brain leaves me and i'm all over the place. I can't remember what the Dr. has said to me. I took my bff once, and my boyfriend for the Cat scan. I'm thankful to have folks that want to go and support me. The diagnosis was hard... Don't really remember driving home.
I am ready to move forward, even though i don't know what that means.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 513
Joined: Mar 2013

It kept all of our notes in one place.  I would take it with me to work so when the doctors office called I would note what they said and then it would go with us to the dr appts and treatments.  When it came time for chemo we noted HOW I reacted and what we found worked (pushing drugs in the IV slowly was a HUGE discovery) and the wonderful chemo nurses were always willing to listen.  It made all the subsequent treatments better.  I wrote down all the names of the chemo nurses who helped me in my treatment and bought them all a nice bar of soap from Crabtree and Evelyn and tied a ribbon with their name on it.  (Wasn't cheap but they made my chemo tolerable and they are so wonderful!) 

One step at a time, I know that is hard, but we are here.  I wish I had taken the RX for something to calm me down.  My friend from work who went through breast cancer surgery and treatment before me told me to take it if offered or to ask for it. 

There are, what I called, "HURDLES".  Tough times I had to make it over, but I did.  You will too, you will have your doubts, but you are going to surprise yourself. 

laura25's picture
laura25
Posts: 160
Joined: Mar 2011

Dx January 2011 at age 45

complete hysterectomy, ovaries, tubes

stage 3c endometrial adenocarcinoma grade 3... pelvic lymph node positive

8 rounds carbo/taxol, finished July 2011

Had a few scares,  In February had lymph node biopsy done results were inconclusive... Had PET scan done in May results were clean,  lymph node went back to normal size. 

Feel great, I exercise 3 to 4 times a week.  Lift weights and run,  I try to eat right.  

 

cared1027
Posts: 2
Joined: Jul 2012

Dx March 2012 at age 58

Location: Florida

No symptoms, At annual my Gyn recommended a sonogram to take a look at ovaries based on risk factors.  Sonogram revealed no issues with ovaries but found polyps and uterine thickening, resulting in a D&C.  The biopsy revealed Grade 3 adenocarcinoma with Clear Cell component.

April 2012 complete hysterectomy, cervix, ovaries, and tubes

Final pathology:  Stage 1 grade 3 with focal atypical complex hyperplasia but no evidence of residual adenocarcinoma.  Lymph nodes and pelvic washings were negative.

 No additional treatment was recommended.  I’m followed every 3 months at cancer center with pap and CA125.  So far so good and feeling blessed to get an early since I had no symptoms.

akm52's picture
akm52
Posts: 4
Joined: Aug 2010

It's good to read all your brief health bios. Such variety in the details but it is really one story in a way.

I was diagnosed stage 4B uterine cancer Feb. 2010.  Got a hysterectomy, radiation and chemo. Surgeon and his team told me it was very very likely it would come back, within 3 years.

OK. Right? You learn to live with that. So, 3 1/2 years later, CA125 very low, no sign of cancer with checks every 3 months. I go in tomorrow for another exam and it has almost become routine (but not quite).

Aside from the medical interventions, I really think my changed diet has something to do with my good fortune so far. Lots of cruciferous vegetables. No meat or dairy. Not much sugar. Trying to create a landscape inside that is not friendly to cancer cells. My energy is back. I feel really good. Today.

Wishing you all wellness.

20creekfarm
Posts: 4
Joined: Dec 2012

Stage IVb endometrial adenocarcinoma

48 years old

 

Hi all,

My story is a little complicated.

Back in mid 2011-early 2012 when I was 46-47, I started having VERY heavy periods.  Days when I couldn't leave the house.  Discussed problem with my Gyn, and he recommended uterine ablation.  I agreed.  As a pre-surgical test, he did a hysterosonogram with saline to inflate the uterine cavity so he could see my anatomy more clearly.  He saw a suspicious looking ribbon-like growth in the lower part of my uterus, took a biopsy, and two weeks later told me path report indicated I had hyperplasia with atypia.  Gyn referred me immediately to Onc/Gyn, who recommended complete hysterectomy with ovaries and tubes taken, as well.

Pre-surgical PET did show activity in my uterus and also three small hot spots in my lungs, less than 1 cm in size.  I wasn't told about the lungs -- only the pelvic activity -- and this was before I'd learn to get copies of everything.  

So, hyterectomy...frozen section during surgery confirmed at least stage I grade 1 endometrial adenocarcinoma, all lympth nodes negative.  Post-surgical pathology report indicated cancer had started to spread to upper part of cervix, so diagnosis of Stage II, grade 1 confirmed.  I had post-surgical radiation tx, 25 sessions of IMRT and 3 sessions of brachytherapy.  Was told I was "cured."  

Everyone seemed to forget about those hot spots in my lungs. Until...a 5-month post op PET scan...which showed the nodules had doubled in size and uptake.  One nodule was now large enough to biopsy.  My Onc/Gyn was apparently so sure of the metastasis before the biopsy, that he went ahead an ordered a port inserted on the same day as my needle biopsy...which confirmed metastasis and corrected my staging to IVb.  This was Oct 30, 2012.  I began carbo/taxol the next week.  Six sessions every three weeks.  Additionally, I started taking 200mg daily Megace.

I am lucky...I responded well to the chemo and/or Megace.  PET scan halfway through the process showed the nodules had stopped growing.  At the end of chemo, PET scan indicated the two smaller nodules had disappeared...the largest node had shrunk in size and had no uptake.  And, the rest of my body was clear.  

However, my Onc/Gyn wanted me to have a consult with a pulmonary oncologist/surgeon.  Even though there was no indication of cancer activity in my lungs, he recommended having a thorocotomy with wedge resection of the remaining nodule...and a look around the rest of the lung.  I had this surgery in April 2013. Post-op pathology report indicated there was some cancer activity in the nodule -- PET scans are only 80% accurate, I'm told -- but I had clean margins.  Pulmonologist recommends follow up chemo.  Gyn/Onc disagrees.  Advocates letting my body heal from surgery and chemo and watchful management.  Then, his practice goes out of business, and I change Gyn/Onc's.  

New Gyn/Onc recommends the same thing.  Let myself heal some, continue monitoring with PET, and reevaluate when necessary.  She also advocates doing a maintenance regimen of tamoxifen/Megace...on 20 mg tamoxifen twice daily for three weeks, then switching to 40 mg Megace twice daily for the next three weeks, then back to Tamoxifen, etc., etc.  I also take 1 mg coumadin to guard against blood clots common with use of these two drugs.  Apparently, this is a fairly new protocol that is showing good results for advanced stage estrogen-receptor-positive cancer like mine.  June 2013 PET was clear.  I'm given a cautious status of NED.  Onc/Gyn recommends waiting six months for the next scan.  I'll see her later this month and question her on waiting until December. I think I'd rather have one now.

I feel worn out and wary but glad to be here.  Other than fatigue, I'm in pretty good physical condition, aside from carrying around too much extra weight...I'm working on that...life long challenge.

Beth

 

Kaleena's picture
Kaleena
Posts: 1196
Joined: Nov 2009

Went for a hysterectomy due to severe endometriosis  - prior to hysterectomy I had a laparoscopy which showed severe scarring; also had a internal ultrasound - which just showed a deep ovary and a tilted uterus - also had a colonoscopy which only showed some diverticulitis.   Was put on Lupron for six (6) months prior to surgery.

So at age 45 - get my hysterectomy in September 2005 - pathology comes back that they found cancer in my left ovary and uterus.   Therefore had to have a another "staging" surgery - so 4 weeks later in October of 2005 had staging (which at that time they found no more) - Staged - Grade 2, Stage iiia endometrial adenocarcinoma.  However, becasue they weren't sure if it was MMM (which they ruled out) but could not find the origin, I was treated as ovarian.

Treatment:   was to be Taxol/Carboplatin - but had an allergic reaction to Taxol - changed to Gemzar - treated for six months Gemzar/Carboplatin -- treatment completed in May 2005

Radiation:   Due to my severe scarring, ruled out pelvic radiation - only had 3 HDR bracytherapy radiation in August of 2006.

RECURRENCE - After my original onc retired, new doctor indicated I had a recurrence and wanted to start chemo right away and said that I would end up with a permanent colostomy. - Not taking that as truth since this nbew doctor never really examined me, I sought out other physicians.  Went out of state and three hours away.   Confirmed biopsy result.   Had surgery February 2010 - took out mass (which ended up negative) and several lymph nodes - a lymph node had microscopic cells - However, did not do any type of treatment - just a wait and see approach.

I go every six months for check-ups since then.   That doctor moved to Texas so I just go another new doctor.

I am now 53 years old.

SINCE DIAGNOSIS:   I have gone to California wine country, 4 cruises, celebrated all of my sons (3) graduations from high school; my oldest son just graduated from college; celebrated my 25 wedding anniversary, and am planning a trip to Italy. plus many many other fantastic events

artist49
Posts: 53
Joined: Oct 2011

Age : 64

Location: New Jersey, Florida in winter

Diagnosed: September, 2010    UPSC stage 4B grade three - cancer in whole pelvic area including omentum ,

                wrapped around colon, and found in 39 lymph nodes. Optimal debulking at Sloan Kettering.

Treatment: Clinical trial at Sloan - Carboplatin, Ixabepilone and Avastin for 6 treatments ending February, 2011.

                 Continued  with avastin as maintenance every three weeks  till the present 

Status: still NED as of last week's catscan. CA125 is three (was only 53 at diagnosis)

Diet: now on paleo/ketogenic type of diet. Lost 40 lbs since diagnosis, feel great but avastin is now

        causing blood pressure issues.

         I was in disbelief when onc told me results of catscan last week. I was totally expecting a recurrance -after all,

         how long can I possibly expect NED to hang around with a diagnosis like mine? Following the events on this

         forum makes it difficult to be too optimistic . My doctor says - "Turn off the internet!"

         Good luck and good health to everyone.

                

NoTimeForCancer's picture
NoTimeForCancer
Posts: 513
Joined: Mar 2013

You women really ROCK! 

tattooedtxgirl's picture
tattooedtxgirl
Posts: 61
Joined: Sep 2013

I agree.. ALL YOU LADIES ROCK!!

SUNGRANNY
Posts: 81
Joined: Dec 2012

Dear Artist,

Hurray for NED.  Don't let the diagnosis rule your life.  Enjoy your NED.  

Every body is different.  

Sungranny

Rosestar570's picture
Rosestar570
Posts: 10
Joined: Oct 2013

Hi, my name is Marie.

July 2013: Biopsy and D& C

August 27, 2013: DaVinci hysterectomy

Stage IIIc1 Endometrial Carcinoma

10/3/2013: first chemo

Blog: http://rebelcupcake.wordpress.com

I have been feeling okay so far. I was so nervous before the first infusion. I was so concerned that I would be barfing my brains out. My biggest problem has been achy bones. I am not used to it and it can be quite annoying. Not looking forward to my hair falling out soon :(

NoTimeForCancer's picture
NoTimeForCancer
Posts: 513
Joined: Mar 2013

Marie, I know we are all sorry you have had to find us, but know that you can ask anything here.  The first chemo is the worst and I remember those aches.  I promise you, it gets better.  I remember hating the thought of losing my hair, it was a definite "hurdle", and so I know a lot of us understand.  You are going to amaze yourself to find out the kind of inner strength you have.  

Rosestar570's picture
Rosestar570
Posts: 10
Joined: Oct 2013

I really needed to hear those words today! Thank you!

20creekfarm
Posts: 4
Joined: Dec 2012

I had long, pretty dark hair like you before I was diagnosed.  I decided to get it cut fairly short before starting chemo, and then when it started coming out, I had it buzzed down to about a 1/2 inch.  Doing so was just easier on my scalp and my shower drain.  

When I lost my hair, I told myself it was a good sign that the chemo was doing what it was supposed to do.  

Let yourself experiment with wigs and hats and scarves.  You might also enjoy finding some new inexpensive costume jewelry, like big dangly earrings you might never have worn before.

Also, my hands ached horribly for a few days after my first chemo session.  But after spending a little time loosening them up by squeezing tennis balls, the pain went away and never came back.  I thought that was weird...but there are many shades of weird with this disease.  ;-)

Best of luck to you!

ConnieSW's picture
ConnieSW
Posts: 609
Joined: Jun 2012

You got that part right.  I am nearly 14 months post chemo and my left eyebrow has repeatedly thinned out and grown back.  What's that all about?  Anyway I am  NED after standard treatment (surgery, chemo, brachytherapy) for 1A UPSC.  At 67,  I feel good, maybe even better than before since I am making eating well (with occ lapses.  Sigh...), exercising, trying new interests a priority.  No matter what the future holds, I cherish this past year I've been given since my wake up call.  I take nothing for granted.  I always was pretty mellow but am now even more so.  Never sweat the small stuff.

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

It is tough but it is doable.  I was stage 3C1 with carcinoma sarcoma back in April 2011.  I am two years out and still clear of cancer.  Just had another 3 month checkup yesterday. For me personally I cut my hair short before chemo and when it started fall out, about 15 days after the first chemo, I got an electric razor and shaved my head.  Boy, was my scalp white, I looked like I had bleached my hair like the Suzanne Powers did on her exercise tapes.  It looked really funny.  I then shaved the stumble off and tried wearing hats and scarves.  I never tried a wig.  I am in Texas and that summer almost every day was over 100 degrees.  I ended up ditching everything and just went bald.  For me it was easier and I discovered it was very freeing.  No more worried about hats, wigs, or scarves or hair falling out.  Yes I was like Mr. Clean.  The biggest thing going out in public was I got a lot of children looking at me but adults not so much.  I did go out and buy lots of jewelry and wore it and still do.  I worked throughout receiving my chemo except for those days that I was just too tired or hurt too much.  It usually was days 3-5 that I took off but the rest of the time I worked.  It is doable.  My biggest plus was a finding something positive about it and keeping a positive attitude.  I am more of a half full glass than a half empty one anyway so it was easy to do.  I did have some bad days but I usually jumped out of them really quickly.  Keep positive and know that all the ladies on this site are with you and I am praying for a good outcome for you. trish

SUNGRANNY
Posts: 81
Joined: Dec 2012

Hello,

Diagnosed Oct. 2012 with Serous Endometerial Adenocarcinoma (UPSC)

Surgery Nov 2012. Cancer - uterine tumor, tubes, ovaries, cervix, tumor on the bladder, some lymph nodes positive, including para aortic nodes that couldn't be removed.

Carbo/taxol chemo followed by external IMRT radiation in -2013.

CT Scan in April, 2013 - NED!!!

I am grateful for this discussion board

purplehybridfairy
Posts: 1
Joined: Nov 2013

My name is Krissy

I was diagnosed July 11th, 2013 after a follow up biopsy for hyperplagia

On July 18th I had a open stomach complete hysterectomy due to my enlarged uterus. the pathology report came back that it was only stage 1a. It didnt spread at all.

I guess I am pretty lucky cause I didnt need chemo or radiation. I have less then 5% chance of reaccurance. I know I am only a couple months into this but I feel so lucky and blessed that it was found early. In some ways I am sad that I will never be able to be pregnant again. I did loose a child 19 years ago due to heart problems and him being premie. I know I will get through this it will take time. I have a wonderful family that is supporting me and very understanding. I also have friends that are there for me also. Some days its very hard and some days I am doing really good.

I healed very quickly. Now I just have a scar that goes down my belly. I am now without pain and tenderness in my stomach. My furbabies are able to be on my belly without me shoving them off because it hurts. BTW I have 4 furbabies. 1 dog and 3 cats. my smallest cat cleopatra has been the best treatment since i got home. Every night she lays on my belly as i sleep. when i got home from the hospital she would not leave me for nothing no matter how many times i pushed her off she would come right back and try and make it better. after about a week i gave up and let her do what she wanted. for a 4.6 pound cat she is very strong willed. she knows when i am sad and hurting. she just curls up on me and gives me that unconditional love that they tend to do. My dog also has been a big help. when i take my walkds he walks with me. He lays by me all the time no matter what. sometimes he steals my pillow and sometimes he just curls up next to my side. but i am greatful every day for them being around me. Sometimes my oldest and biggest cat will lay one me if he knows I am feeling really down. He thinks he is a heating pad and lays on where i hurt to make me feel better. gotta love them.

I spent my first birthday cancer free last month. Now i am looking forward to my first holidays cancer free as well. 

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