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Roll Call For UPSC only

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

Would like to find out the number of women on here who have UPSC, stage, NED or not yet status, age at discovery, and treatment.  For such a "rare" cancer, there seems to be quite a few of us on here and showing up recently.

Debra, Vidor, Texas, 57.6 years at dx.,UPSC 1a/b, grade c, treatment at M D Anderson in Houston, six rounds Taxol/Carboplatin, five rounds of internal radiation. As of May 14th, CA125 is 15.8, NED 4 years.   Just UPSC ladies for now.  Thanks, Debra

DebiR
Posts: 13
Joined: Jul 2014

Debi, North Olmsted, OH, 56.5 years at dx, UPSC 3A (positive ovaries, pelvic wash), grade 3.  Treated at University Hospitals, Cleveland, OH.  Currently in trial GOG-0258 and treatment is 6 rounds of Carbo/Taxol that started 7/16/14. 

It happened to Me's picture
It happened to Me
Posts: 117
Joined: Apr 2014

Jeanette, Bettendorf, IA  51 at dx Jun. 2013, UPSC 3A (In Uterus, on left ovary, pea sized tumor on back of pelvis, on paracolic gutter, pos. pelvic wash w/aypical cells), grade 3.  No lymph nodes.   Radical hysterectomy, University of Iowa Hospital, Cancer Center, 6 rds taxol/carbo began 8/2013 finished 1/2014.  No radiation.   Currently NED (6 or 7 months depending on when they start counting).   CA125 was 9 at dx and 8/11/14 currently 5.

Abbycat2
Posts: 137
Joined: Feb 2014

Cathy from Vero Beach, Florida, 60-years-old when diagnosed, UPSC Stage 3A (spread to one ovary with positive pelvic washings, no cancer in lymph nodes), as of 8/8/14 CA-125 is 11, NED for almost 5 months.  As you all know, UPSC is always a Grade 3 cancer.  Six rounds of Taxol/Carboplatin, no radiation treatment. I am feeling great!

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

At age of 60 I Had surgery 1/09.  No symptoms.  Had abnormal PAP.  Had robotic surgery.  5 of 25 lymph nodes positive as well as positive abd wash.  Had sandwich treatment of Taxol /Carbo with 28 external treatments  and a 28 hour internal treatment.  Had reaction to Taxol within first few minutes.  Can only get Taxol at very slow rate.    CA125 began to rise as soon as chemo stopped.  Have never been NED.  

Had 18 months before 2 nd chemo and CA125 raised to 1700. No symptoms, CAT showed increase in multiple lymph nodes.    Had reaction to Carbo during 9 th treatment.  Switched to Cisplatin..had Total of 7 treatments this time.  Had only 7 months before 3 rd chemo and CA-125 rose to 3200.   No symptoms, CAT scan showed increase in multiple lymph nodes.   Had 6 more Taxol/ Cisplatin.  Finished chemo 5/12.  Due to reactions to both drugs It takes me two days to receive the chemo.

When I recurred after only 7 months, I asked if the recurrences would occur in shorter time periods.  The nurse practioner said they usually Do.    I am glad I proved them wrong. 

 Developed bilateral lung clots in 1/12.  No symptoms.  Found on CAT scan.   Have been on daily blood thinner shots since then.   Started Aromasin after 3 rd chemo. 

It has been 27 months since my last chemo and currently CA -125 is 1582.  The latest CAT scan shows only  one lymph node enlarged in mediastinal area.  Waiting for news if I am a candidate for cyber knife or surgery to remove lymph node.  The node is in front of the trachea, so neither maybe possible.  If I can't have either I will continue to be in observation, but I know chemo is in the future.

Because we winter in Florida I had my surgery and first three chemos at Moffitt Cancer Center in Tampa, Florida.  I had my radiation treatments and last chemo at Quincy Medical Group Cancer Center in Quincy, Illinois. 

For the other rounds of chemo I had the first three at Moffitt and the last ones in Quincy.  both of my doctors say the CA-125 is only a number.  They wait for symptoms.....which I have never had.....or changes in the CAT scan......which I have had 20 since 2009.   I expressed concern over so many scans, but they said the risk of the UPSC spreading is higher than the risk of the radiation from the CAT scans.

i have learned not to stress over the rising of the CA-125 and celebrate the small increases I have had since being on Aromasin.  So it's been 5 years and 7 months since diagnosis, but never NED.  The doctor told me initially my UPSC was not curable, but treatable like a chronic disease.  I am fortunate my recurrences have stayed in the lymph nodes, and I can still receive Taxol/ Cisplatin.  

When I signed on to this site I was the 10 th person to sign on thus the name Ro10.  My name is Roberta, but my family always called me Ro since I had a twin Robert.   It will be interesting to see how many more UPSC sisters we have now.  I am sorry there are so many of us.

Pat51
Posts: 111
Joined: Feb 2011

I have UPSC.  I was 59.6 years when diagnosed.  I was diagnosed in Feb. 2011 with UPSC Stage 1B (I think I may be a Stage 1A on the newer charts)  I had a radical hysterectomy, 6 carboplatin,taxotere chemos and then 3 brachytherapy internal radiation treatments.  My CA125 in July 2014 was 15.2. (CA125 was 27 at the time I was diagnosed.)  I had surgery at Theda Clark Medical Center, Neenah, WI , chemo at Martha Seikman Cancer Center, Appleton, WI and radiation at the University of Wisconsin Clinics, Madison, WI.  I finished treatment in September, 2011.   I have been NED for almost 3 years.

Feeling very blessed at this time.

Pat

cheerful
Posts: 125
Joined: Apr 2011

I was 59 1/2 years old when diagnosed in February of 2011.  I clinically was diagnosed with UPSC Stage 1A (a large polyp of 5 centimeters).  I had a hysterectomy, 6 carboplatin/taxol chemo treatments from April to August of 2011 and then 3 brachytherapy internal radiation treatments after my chemo ended the end of Sept/Oct of 2011.

My CA 125 in May 2014 was 7.  I have had numerous CT scans and they all show with no evidence of disease.  I have been NED for almost 3 1/2 years.

I am very grateful and thankful to continue to be with No evidence of disease and I feel thankful for each and every day.

Cheerful

a/k/a Jane

 

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

Indianapolis, IN.  DX on April 5, 2012 at the age of 49 after irregular bleeding and atypical cells after PAP.  D&C said I had Type I (garden variety type) and Type II (UPSC) Stage 1A.  Surgery was the DaVinci complete hysterectomy where they took a ton of lymph nodes.  All lymph nodes were negative for cancer but since UPSC was found it was determined I need the full-Monty of 3 chemo (Taxol/Carbo), 25 external / 3 internal IMRT radiation, 3 chemo (Taxol/Carbo). 

Developed lymphodemia and have a lovely collection of compression garments, as I suspect many of the ladies out here have as well.

NED since the treatment ended December 19, 2012 (Specific dates in 2012 are burned in my memory!)  I feel so lucky to have caught this devil early and to have found all you beautiful warriors, and all the sisters of all the other "below the belt" cancers at all.

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

Diane, Houston, Texas, 58 years at diagnosis. UPSC stage 1a discovered June 2011, and treated with 6 rounds of Taxol/Carboplatin. No radiation. Chemo finished in November, 2011, so will be 3 years post treatment at that time. CA125 goes between 7 and 8, and was 4 after surgery. CA125 not taken before surgery because cancer wasn't suspected, Pelvic wash clear but lymph nodes weren't tested. 

NED so far, and grateful for each day!

 

joannewtta's picture
joannewtta
Posts: 6
Joined: Jul 2014

I joined the UPSC club in June of 2013. I was 67 years only when dx.(average age for UPSC). My surgery was July 10 and it involved full hysterctomy. I was a stage 3 grade IIIC I believe.  One pelvic lymph node was malignant, the pelvic washings showed malignant cells etc. etc. Started Chemo in August which was the taxol and carbo. Had 18 treatments(mine was one week with both drugs, two weeks with just taxol and then one week off with a Newlasta shot at end of each series. I also had two blood tranfusions. Completed chemo in Jan and had 4 braciatherapy(sp) in Feb. 2014. I had CT scan in April and checkups in April and July. NED and CA125 is down to 7. I feel good  but understand how scary this is. I only just found this blog about a month ago and just wish I had found it sooner.

My husband was diagnosed in May 2013 with Renal Cell Carcinoma and had his right kidney removed two weeks before my surgery. He has small tumor on his other kidney but we are just watching it and has had no change in shape or size in 14 months. No chemo or radiation for him. I say I got the full-meal deal and he just lost a kidney. Needless to say this has been a year in our lives we don't want to relive.

It is really good to read this site and see the great women posting here. I read somewhere that you don't know how strong you are until you have to be strong. So true.

My post chemo and radiation issues are neuropathy in my feet(really bad) I am seeing a neurologist in Sept and hope there is some relief. Bladder will probably never be the same!!! If anyone has any good ideas about the neuropathy I would appreciate hints. Sitting around in 80 degree weather with a blanket on them looks rediculous but gives relief.

Hybridspirits's picture
Hybridspirits
Posts: 150
Joined: Nov 2012

my oncologist believes in trying accupuncture.  I have neuropathy and am working on accupuncture for that and my immune system.  From   your description your neuropathy might be a little more intense than mine.  My oncologist has shared that she has seen good results.  She does recommend an accupuncturist that deals with cancer patients, hopefully on a cancer hospital integrated team.  Mine is and I love him.   She also believes in the B vitamins.  Deficient B-6 or too high B-6 can cause neuropathy.  So she would periodically check my B-6 levels.  My naturopath has taken over that monitoring.

 

hope this helps

artist49
Posts: 53
Joined: Oct 2011

I am  65 now and live in NJ.

I was diagnosed at Sloan Kettering with UPSC at age 61 in September. 2010. My stage was

4B, grade 3 and cancer was found all over pelvic area  and in all 40 lymph nodes tested. I

had a hysterectomy which was optimal and then entered a clinical trial at Sloan. 4 months

of carbo. ixabepilone  and avastin  and then continued with avastin for maintenance till

October 2013, I have been NED since Feb. 2011.   My ca125 was 53 at diagnosis and is

currently 1.

Now for the rest of the story -   In may 2012 I was tested and found to be BRCA 2 positive.

! was told  by  the genetics counselor at Sloan that being BRCA  positive can result in longer

remissions - esp. BRCA 2.

But, I'm not taking any chances with a horrific diagnosis like mine. I flew to Chicago  to learn about

diet from Dr. Block. I flew to Durango, Colorado  to become the patient of  the famed naturopath there.

She counsels me on the phone by monitoring my lab tests. She also OKs my diet.

I feel great but every CT scan brings on monumental anxiety.  I have a normal life back and

fear I will lose it again.

If anyone is interested, I will post my super anti cancer AM smoothie.

 

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

Would love to hear about the smoothie.  Been doing the green fast smoothie and have FINALY lost the 30 pounds I gained during chemo!  Always looking for healthy options, since I don't eat anything white, no meats,  sweets, or grains.  Been feeling much better and diabetes is well under control without insulin.  Thanks artist 49, Debrajo

molimoli
Posts: 26
Joined: Aug 2014

Please post the smoothie,Thanks for sharing.

artist49
Posts: 53
Joined: Oct 2011

1/4 lb. black raspberries   (Frank Farms.com packs them frozen in 2 1/2 lb. bags. Pregrind this bag in vitamix if possible

so that seeds get ground also and freeze in 1/2 cup glass  containers. My ca125 dropped 2 points when I

got the vitamix and was finally able to grind those teeny seeds.)   

1/4 avocado (thickens smoothie beautifully)

1 tsp. or more turmeric

dash cinammon

1/4 tsp liquid extract stevia sweetener (nature's answer brand)

1 tbs chia seeds

1 tbs hemp hearts

1 tbs +  raw organic cacao powder (nuts.com) 

1/2 of an organic lemon  (I pregrind  alot of whole organic lemons in vitamix and freeze in

1/2 cup glass containers)

water

I prepare 5 at a time in my nutribullet small cups but add the raspberries each morning.

Been doing this for 3 years!

If this seems complicated, read  my story.   I'll do anything for NED.

        

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

I know about all the ingredents except hemp hearts?  Are these the hemp seeds or something else?  Thanks again, it sounds really good!  Dera

artist49
Posts: 53
Joined: Oct 2011

They are the same. I believe some call the seeds hearts because of the shape. If anyone

thinks  this is incorrect, please inform us. Thank you.

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

Thanks for the information!  I know my health food store just started carrying hemp products.  They said it was a state reluntance to promote hemp or MJ{?!}  I'm in Texas.  I have only heard good things about both. but it has to have the THC{?} in it to do really good and Texas will only allow it with the THC taken out.  Anyway, it still sounds healthy!  Best, Debra

molimoli
Posts: 26
Joined: Aug 2014

What about diet ,can you share?  I intend to start the smoothie this week,

Hope you are doing well.

 

Prayers of special blessing for all,ned please!!

artist49
Posts: 53
Joined: Oct 2011

Still NED as of September 4 scan. That's 4 years now since diagnosis  and I thank G-d every day  for my good fortune

but wish with all my heart that everyone could be healed from this miserable affliction.

You asked for my diet Molimoli - maybe it could help someone!

Breakfast - the black raspberry smoothie I outlined above

                 Organic eggwhite omelette with 4 crushed garlic cloves and some kale sauteed

                  in 1 tsp coconut oil - served with organic tomato paste. I flavor this with

                  oregano, chili powder, black pepper, thyme, etc.

Lunch-   every raw veg in my fridge, some ground in cuisinart chopper/grinder- carrot,

             pea shoots, red cabbage, shallots, turnip, daikon, lettuces,peppers etc.

             served with homemade tahini - organic sesame seeds, pumpkin seeds,

             sunflower seeds, lemon juice, garlic, shallot, fresh dill, parsley, seasalt.

             Made in  Vitamix  and frozen in pyrex containers. Before eating I

             grind flaxseed and add it to tahini.

Dinner - a steamed cruciferous veg is main course with  a small amount of wildcaught fish

             or organic chicken on the side, sometimes sweet potato or wild rice.

             Dressing for veg is Vegennaise blended with fresh parsley and dill, garlic clove,

             onion powder and couple drops stevia. Prepare it for the week.

Snack - organic granny smith apple, small  assortment of every  organic nut-

            brazil, walnut, almond, cashew, etc.

Drink - filtered water with some organic apple cider vinegar

           chamomile, green tea, peppermint tea.

a few times a week - blended in vitamix veg drink - spinach leaves, red beet slice,

                               broccoli, carrot ,1  tbs. soaked goji berries, strawberries,

                                piece of organic lemon, some liquid stevia.

My goal, as you can see, is to eat  the widest variety of foods in small amounts

every single day. Don't want to miss any cancer fighting nutrients.

Sometimes use cranberries, cherries , blueberries and pomegranate seeds

in  the breakfast smoothie.         

molimoli
Posts: 26
Joined: Aug 2014

To artist 49, thanks a million for diet,will source the required food on monday, and start pronto.

Judemo
Posts: 99
Joined: Jun 2014

Although I don't have UPSC, I would love to have your smoothie recipe.  Thanks and I hope your feeling great today!

dkdrew's picture
dkdrew
Posts: 15
Joined: Jul 2014

I'm Kathy from Maine. I was diagnosed with UPSC stage 2, grade 2 on Apr. 9, 2014. I am 56yr. I'm currently  being treated at the Lafeyette Center in Brewer, Maine. I just finished round 5 of Taxol-Carbo. I have one more round to go and then 3 rounds of vaginal brachytherapy. I saw a naturalist and she told me she couldn't find any cancer in my body but she wasn't sure if it's really gone or if the chemo is doing it, but I'll take this as good news. Hoping my hair will grow back before winter really sets in here!

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

Welcome to all the "Newbies", but sorry you had to come!  Thank you for posting!  Best, Debrajo

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

Connie from Plattsburgh, NY, diagnosed wth stage 1A UPSC in March 2012 at age 65.  I had  enjoyed 8 months of retirement then my world turned upside down.  Treatment consisted of the usual:  surgery, chemo and brachytherapy.  I am currently NED and August 15 will be the    2 year anniversary of last chemo session.  

trustingHim's picture
trustingHim
Posts: 6
Joined: Jun 2014

Hi Connie!

You are the only one that I've found on this site that was stage 1A.  I had the complete hysterectomy with 23 nodes removed which were cancer-free. Were your nodes clear?  I just finished 4 cycles (12 infusions) of chemo.  How many cycles did you have?  I go to my doctor next week so I guess I'll find out if I'm going to have brachytherapy too.  What is that like?  I guessing that you had a CT scan which was clear?  Sorry for so many questions.  I just want to know how close our situations are.

I'm so happy that you are NED for two years!  My doctor said that if there is a recurrence it would be within a year to year and a half.  And you are beyond that!  I'm sure that you are checked periodically. Right?

trustingHim,

Donna

molimoli
Posts: 26
Joined: Aug 2014

Thanks for the welcome, Since my diagnosis in April,2014, I have not had the courage to tell my 2 adult daughters who live away from home , therefore I am travelling a lonely road so appreciate this site more than anyone can imagine.

My 2 girls  and I are still dealing with the unexpected death of my 34 year old daughter. [aneurysm]  I can't bear to give them this horrible news about me and UPSC so I have decided to Not Cry Out Loud,it's a daunting task though.

Thanks for all of you.

 

Judemo
Posts: 99
Joined: Jun 2014

Hi molimoli, I am so sorry to read about your loss and your other heavy burden your carrying alone.  Please know you are NOT alone here.  We care about you and please keep us posted on how your doing ok? I feel supported by these wonderful people on this discussion board and I hope you will too.

molimoli
Posts: 26
Joined: Aug 2014

Hi Judemo, thanks for your kind words ,I will post after my 4months post surgery  scans are done on the 28th  of August, keeping fingers and toes crossed.I am comforted by the posts.

denise05121953
Posts: 12
Joined: Sep 2013

I am sorry about your daughter ....i lost my daughter in July of this year at 33 to cancer (mmmt) and nothing is worse than losing a child. I hope things go well for you and that you go into remission.

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

There are no adequate words.  I am so sorry.  I can't begin to imagine what you are going through.  

molimoli
Posts: 26
Joined: Aug 2014

Hi Denise, Thank you,the very same to you. I am so very sorry about your daughter and  that you experienced similar grief/pain  and so very new, a month? my heart aches for you, when I ask my creator for strength I won't forget to remember you. I'll ask that your strength is continually renewed.  absolutely nothing is worse,nothing at all.

 

I am waiting on results of scans taken last week so will keep you guys posted. 

 

 

pinky104
Posts: 78
Joined: Feb 2013

I was diagnosed with stage IVb in May of 2010 at the age of 61.  I was NED  for 4 years, and I don't know where I stand right now.  I had pain in the left side of my abdomen this past May, had a CT scan, then a PET/CT.  Nothing was found in the left side, other than diverticulosis which was scattered, but a 1 x 1.4 cm. mass was found in the right side in the paracolic gutter.  However, my CA-125 was only 6.3.  My gyn/onc has ordered another CA-125 and a CT scan for Sept. to see if it's grown.  If it has, it'll be removed.  If it hasn't, it won't.  I was told there was a chance it could be a fluid collection due to lymph node removal.  My gyn/onc wasn't at all sure what it was because of the low CA-125.  At my worst, before my surgery, even with stage IVb, my CA-125 was only 94.  I'd actually thought I had celiac disease since my mother was diagnosed at 84 with that, but all my tests had come out as normal.  I had diarrhea almost every day before work, but one doctor had said I'd had irritable bowel.  In high school, I probably did have that, as I often got diarrhea before tests.  I had a small amount of vatinal bleeding about 2 mos. before my diagnosis, which I'd blamed on being put on an estrogen cream because of the pessary I had.  Instead, it was because of a large uterine polyp.

My treatment was total hysterectomy, bilateral salpingo-oophorectomy, omentectectomy, iliectomy (had a small spread into the small intestine) along with removal of my gallbladder for gallstones I never knew I had plus an incidental appendectomy. These were done at St. Peter's Hospital in Albany, NY.   I had 6 rounds of carboplatin and taxo where l worked, at Glens Falls Hospital, and no other treatments.  I've had follow ups every 3 months for awhile, then 6 months, and I was supposed to be down to once a year at my gyn/onc at St. Peter's when I developed this new mass.  My PA at my family doctor ordered the scan for my pain.  I continue to follow up with the oncologist in Glens Falls Hospital every 6 mos., as I was diagnosed with hemochromatosis at 3 months out from surgery, and I have to be checked for that.  I also had surgery in August, 2012 for an incisional hernia with a mesh implant.  I don't know what will become of that if I have to have surgery for this new mass. 

Sandy3185's picture
Sandy3185
Posts: 30
Joined: Oct 2013

Sandra, Winter Haven, Fl 67 at diagnosis 12/05/13, after surgery at Moffitt Cancer Center in Tampa,Fl-UPSC stage 2 grade 3, completed all trestment 6/17/14, currently NED, last CA125 July 16th 4.0!! I had 3 rounds of Taxol/Carboplatin then switched to Toxotere/carboplatin due to increasing neuropathy in legs, feet and hands. Also had 3 rounds of internal radiation.

I am feeling really great now. Finally recoverd from treatment and have a lot of energy and getting back to my old routines and interests. I will see by onc/gyn in Spetember for my first follow up.

my life
Posts: 5
Joined: May 2011

Pat from valencia California, diadnosed fall 2010.  6 carbo-tax tx f/b 3 brachytherapy  NED 3 years But I have neuropathy in hands and feet. Tried various products noth**** has worked so far, can't even write a letter. Other than neuropathy, feel good. Hair will grow back, mine came back better than before except I never got my eyebrows back.  Roberta when I found this site, you were one  of 4 women who posted regularly and gave me great support. You are the only survivor and the reason why I occasionally log on is to check on you. You hang in there!!  my prayers are with every woman battling this disease.  

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

Laura. Diagnosed in 2009 at age 46 with stage IIIC2 UPSC. Treated at MD Anderson with up front extended field pelvic XRT and cisplatinum, 3 HDR treatments, then 6 rounds of carbo/taxol combo. NED since.

ellen5121
Posts: 5
Joined: Jul 2014

So glad you are doing this roll call as I am recently diagnosed with UPSC and also thought that this diagnosis does not seem as unusual as research/internet information indicates. I just had complete minimally invasive hysterctomy on 8/13/14 and feel that I am recuperating well, I am 61 years old and live in Brooklyn, NY. I plan to recieve follow-up at NYU and expect to know more about stage/grade and treatment protocol within a week or so. I am very eager to learn from all of you and eventually share what I learn as my journey continues. I deeply appreciate the generous, supportive and knowledgeable women on this discussion board,

 

Ellen

SUNGRANNY
Posts: 81
Joined: Dec 2012

Diagnosed in Nov 2012,at age 64, treated at Duke University Medical Center, after symptoms of vaginal bleeding. Only other symptom was abdominal distress - nausea, bloating.  Total hysterectomy, with tubes, ovaries and lymph nodes removed, and debulking. Diagnosed Stage 4. Carbo-taxol chemo. Developed neuropathy (numbness and tingling byt not pain.) 25 IMRT radiation treatments.  

Chemo shrunk the paraaortic lymph node that wasn"t removed. NED at CT Scan Dec, 2013. Abdominal hardness and problems with diahrrea, alternating constipation, cramps, nausea in June, 2014. CT Scan showed cancer throughout the abdominal cavity, and around large intestine and colon, hydronephrosis (scarring on ureters from radiation), scaral insufficiency fracture (radiation after effect), bowel thickening, enlarged iliac lymph node.

Due to the neuropathy and ureter/kidney issues I declined another round of chemo (50-50 chance of shrinking the cancer for a time.)  

The oncologist had the original uterine tumor tested and it turns out to be Estrogen and Progesterone positive (which I'm told is rare for Serous cancer, especially with Her2 being negative.) I am currently on Femara/Letrozole, and oral aromatase inhibitor.  I had to leave a healthy anticancer high fiber diet due to abdominal problems and am on a low fiber diet to prevent bowel blockage.  I also continue with acupuncture, meditation, and guided imagery. I have started on an alternative supplemental protocol to help with symptom management and shrinking the cancer. My goal is to walk and meditate daily (I do so most days.) I tire more easily, but otherwise hanging in there.

Thanks for the roll call,

Sungranny

susangr
Posts: 63
Joined: Oct 2010

Diagnosed at age 56 August 2010.  Treated MD Anderson. Robotic assisted surgery. Positive lymph vascular space. Staged 1a/1b Concurrent pelvic radiation x 5 wks with weekly Taxol X 5 doses.  3 Brady treatments and 5 21 day Taxol treatments changed to Taxotere due to neuropathy treatment. Lymphedema right leg 4 months post op.  Just completed CTs show still NED. 

 

trustingHim's picture
trustingHim
Posts: 6
Joined: Jun 2014

I was diagnosed in April 2014 at age 66 and had a radical hysterectomy and removal of 23 lymph nodes which were clear. Stage 1A/ grade 3. A wash was not done during surgery because my doctor did not know it was UPSC until the path report came back.  (It was misdiagnosed in my original path report.) Since we don't know if it had spread to the abdominal cavity, I was given three choices: have surgery to do the wash, do chemo or just observe. We decided to do the chemo.  Four consecutive cycles once a week (12 infusions) of carbo/taxol. I start my 4th cycle this Wed.. 8/20. My last CA125 was 100.  I will have a CT scan after my last cycle. Hopefully I will have NED!

molimoli
Posts: 26
Joined: Aug 2014

I was dx in march,2014, stage 3 UPSC,   total hysto. on  May 2 ,2014.  mri in June  showed no mets to nodes or omentum.Feeling healthy but depressed.  scans will be repeated Aug 28 to determine course of treatment,  Questioning the benefit of Chemo/Radiation as opposed to using surgery only,if and when necessary.

 

Any advice or information will be greatly appreciated.Thanks.  Newby.

It happened to Me's picture
It happened to Me
Posts: 117
Joined: Apr 2014

So sorry to hear about the loss of your 34 year old daughter.  UPSC is scary and doable.  I am UPSC stage 3A and am now 7 months NED (No Evidence of Disease).  We thought my cancer was contained in the uterus but after surgery, the doctor said he found a pea sized nodule at the back of my pelvis.  Pathology revealed it had spread.  Chemo. was ordered and the doctor didn't think that radiation would benefit me.  I had 6 rounds of Carbo/taxol.  It was tough but to me it was worth it.  UPSC is an aggressive sneaky cancer.  Please weigh out all your options.  There are so many women who were stage III and IV with uterine cancer that are still with us.   Also, as a daughter, I would want you to tell me even though I just lost a sister.  The more support you have, the better you are.  They need their mom and you need your daughters.     That's just my opinion as a daughter.   I was never blessed with having children.  This disease won't beat us.  We are WOMEN, hear us ROAR.   Best wishes.  I will be praying for you.  If you aren't comfortable with your doctor's options, get a second opinion.  Please read the threads on this board, these women are so knowledgeable and they have so many experiences and encouragement to share.  They have been through what we are going through.  Take care.

Jeanette

molimoli
Posts: 26
Joined: Aug 2014

To It happened to Me

Hi Jeanette,

Thanks to the Creator that you are ROARING at this awful Cancer ,I hope it never comes back for all of you that have NED.

I hear you from the daughters point of view , I came with an open mind and very much appreciate the imput.

I must confess that the treatment and its side effects are more frightening to me than the actual Cancer .I guess it's because I am feeling no discomfort now and except for 2 episode of spotting a year apart  I have had no problem . but reading and learning from this site I am confident that in a little while I will be looking out through clearer windows and will be able to make informed decisions about my care moving forward,

I have post op. scans to do in the next week ,I will keep you all posted as I get the results.

Thanks for your prayers.  Please read reply to  No Time For Cancer ,

Abbycat2
Posts: 137
Joined: Feb 2014

Molimoli,

I am sorry to hear that you have UPSC but am glad that you found us here.  I was diagnosed with UPSC, Stage 3A on 11/7/13 and was both shocked and depressed for a while.  As time has gone by, it has become easier for me to cope with this diagnosis and to move on.  My heart goes out to you over the loss of your daughter.  I believe that your two other daughters would want to know about your health situation.  Would you want a loved one to hide a cancer diagnosis from you?  By telling your daughters, you would be giving them the gift of being able to return your love with gentle support.  Whatever you decide, molimoli, know that we support you here. 

Take good care of yourself,

Cathy

molimoli
Posts: 26
Joined: Aug 2014

Abby cat2

Hi Cathy,

Thank you for responding,also for your kind words, But moving on is not something I do very well,unfortunately, but I will try , For a long time now I have been living in a pained body. I  am reaching out now which is an improvement from where I begun and where I stayed for far too long,it seems.

   The girls would be quite supportive but most of all they'd be very sad, I have seen them sad before and cannot bear to see that again.not now.

It's comforting to know the support is offered and it's not conditional, I really need that.

My response to NoTimeForCancer gives a synopsis of my situation ,please read if you have the time ,it's awfully long ,but meant for everyone .

No I would'nt want a love one to hide that from me ,however, if my plate is full and they know that, delaying the disclosure may help me to get my footing steady.so I think.

 Thanks for your point of view.

 

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

molimoli, I can't imagine what it feels like to lose a child.  I am so sorry to hear this and pray for you and your daughters.

As far as your treatment, UPSC is very agressive, and at Stage 3 you can definitely fight and beat this devil, but it would probably involve the treatment.  As the other ladies say, the treatment is doable, it is scary, but you will amaze yourself. 

If I can make a suggestion, I don't know your family dynamics, but you certainly didn't chose any of this but maybe your daughters would like to help you with this.  If you work perhaps your company has an Employee Assistance Program (EAP) who can help you find those words. 

You have a full plate, more than most, and I wish you peace.

molimoli
Posts: 26
Joined: Aug 2014

NoTimeForCancer,

Thank you for your prayers and suggestion , it's much appreciated.  I just can't imagine any consoling words that I could use the moments after my sentence in which I  would have disclosed to them my own death sentence. I have spent 5 months convincing myself that the later they know is the better for them,less time to worry,less time to put their lives on hold  while they hold their breaths waiting. 

At this point I simply can't imagine where they'll get the strength from,simply can't.

Re: family,we were a team of 4 girls, my 3 girls and I,we were each others support group, my eldest was 34 years old ,[we were each others best friend] with a boy of 1year and 8 months and was pregnant ,immediately after the aneurysm  while she was clinically dead the baby was delivered by c.section. the 2 young kids lives with their dad I am the doting grandmother and hoped to see them through university as I did my 3 girls.-- now this.

My 2nd daughter had a baby girl 6 days before her sister's death,[ this we were all celebrating ]  She lives with her family 4 hours away from  where I live, visits often, begged me to stay well for her daughter and the 2 boys. [as she ,like me,developed the paralysing fear of sudden death] I promised her with a reassuring  hug and a kiss that I'll be there until her daughter and the boys  at least finish school. I needed the tears to stop flowing so that promise did the trick.--now a trick indeed.

My last daughter had just finished university and was so very proud that she made her sisters  very proud ,she was spoiled rotten by us all, most of all she didn't have a mom and 2 sisters she had 3 mothers  --then that.

She finds temporary rescue from the pain by travelling abroad to new places often,vowing to live her life quickly with no encombrances.She begs me to travel with her, minimize my grieving and  "start living again" .  I never fail to agree with her ,I never fail to promise her that I will, in just a little while, i'd say ,all the while knowing that I am giving an empty promise, grief is now my friend.  

 Grief in itself became my comforter.Cancer found me  in the arms of grief and maximized that which it found.

I Don't and won't fear Cancer,I can do Cancer, sometimes I see Cancer as My rescuer from grief .My fear is disclosing and unwittingly putting my children on a death watch journey,arresting their lives all over again ,what if they befriend grief as I do?  How can I ? I keep asking myself.  The posts are encouraging and gives me hope of some extended time so my mind is open, Thanks to all.

Abbycat2
Posts: 137
Joined: Feb 2014

Your post yesterday to NoTimeForCancer brought tears to my eyes.  I understand your hesitancy in telling your daughters about your cancer at this point in time.  Your situation is a difficult place to be, but please don't give up hope!  I remember reading a study in which it talked about the long term survival of women with UPSC stage IVB.  These women were alive and well with no evidence of disease ten years after their diagnosis!  Someday, years from now, I look forward to reading one of your post in which you talk about your daughters and grandchildren and your shared lives.  I pray that you maintain a sense of hope and that you find peace. 

Take good care of yourself, molimoli,

Cathy 

It happened to Me's picture
It happened to Me
Posts: 117
Joined: Apr 2014

MoliMoli,

Don't count this as a death sentence.  It's not.  It's a bump in the road of life.  The best way to beat this is to get the help, get the encouragement, get the nutrition, exercise.  Laugh often, live life and enjoy what you have.  You have two daughters and grandchildren that love you.  Enjoy each moment of talking on the phone, laughing with your grandchildren etc.     That is the one thing that I have learned.  To enjoy each day, and to laugh often.   We may have cancer, but cancer doesn't have us.    There's always HOPE.  

I will be praying for you.  You are strong, you are a survivor.

molimoli
Posts: 26
Joined: Aug 2014

Jeanette,I heard you ,I am reaching for the courage to comply.

Advice is sound, and embraced, I won't stop until  I have learnt  what you already have.

 

I will update.

molimoli
Posts: 26
Joined: Aug 2014

Hi everyone,I hope for all of you that this week has started out with renewed hope and a resolve to really  live while we are alive,it has for me , wish the same for you.

As I mentioned I did several scans ,face and neck,chest and abdomen,also biopsies from vaginal wall. I am cautiously happy to tell you ,NO<NO<NO<  I am' VERY' happy to tell you that In regards to cancer they found  NED. yea!!   Thanks to the creator for the reprieve, I am embracing it ,although knowing that  I am dealing with a sneaky dickey  thingey I still did the happy dance.

Thanks for lifting me up when I fell,I suspect that there are more of those tumble-weed days round the bend. so eat up your spinach guys ,your lifting days are not over.

Wishing you all a stress free good week. I am hugging, can you feel it ?

 

 

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