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How about a roll call? Haven't heard from many of you in a while.

artist49
Posts: 87
Joined: Oct 2011

State age, geographic location, when diagnosed, stage at diagnosis, treatments, current status,

complementary treatments, source of strength (or something like that).

TAyers's picture
TAyers
Posts: 86
Joined: Aug 2012

Hi my name is Tami  and I live in Girard, Pa. I was diagnosed with UPS when I was 46 years old on May 18 2012, after very heavy bleeding a few d&c's, an ablation, more bleeding, and very stinky clear mucousy fluid, bloating and left sided leg pain over the course of a few years, but the later symptoms about 4-6months. My stage was a 3C and a grade 3.I had total radical hysterectomy, 6 rounds of carboplatin and taxol every 3 weeks, 25 external radiation treatments with 3 internal brachytherapy treatments. My strength came from The Lord, my family, and friends. The discussions on this board also helped me look for facts, hope, and encouragement. It also helped me not to feel so alone. I welcome any questions and friendships.  I have not gone to a naturopath like many others on the board. I am not sure which one I should trust to go to. I cut back my hours at work and chose not to do the disability route at this time. If I should have a reaccurence I will do so then. I also was diagnosed with papillary thyroid cancer right before I started radiation. I had a thyroidectomy right after all of my radiation treatments.They also removed 5 spots of cancer and had the I-131 pill as well. It has taken my body a while to bounce back from treatment. I am also a previous gastric bypass patient and sometimes I wonder if my body succumbed to cancer because of all of my nutritional deficits. You can drive yourself crazy with the what ifs, you just have to focus on survivorship. It has been 2 years since diagnoses and 18 months since my last treatment for UPS and there are no signs of cancer. My Ca-125 marker is not a good marker for me, since the highest it ever climbed was a 27 and I had 3 lymph nodes involved. I still have my port, but may get it out in Janurary as long as I remain NED. I try not to dwell on statistics, since I am a statistic of one. Any questions please ask.

Your cancer sister,

Tami!

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

I'm Debra{Jo}, from Texas.  UPSC stage 1a/2, grade c.  Fifty seven at dx.  Now 62.  Six rounds of Taxol/Carboplatin, five rounds bracheytheropy.  Finished chemo May 8, 2010 and have  been N.E.D. ever since!  Last checkup was this May...ca125 was 15.8. This group is my only source of strength and information...and really, in the long run it was all I needed to have with help from my God!  If this cancer doesn't kill me, it will have saved my life!  Thanks to cancer, M.D. Anderson found a 95% death causing heart birth defect no one knew of.  I had open heart surgery eight weeks before cancer surgery.  According to the heart dr. I should have been dead at least 12 years before my cancer dx! So, I am still here, still fighting the fight,hoping for the future and living in the moment!  Best, Debra

artist49
Posts: 87
Joined: Oct 2011

Thanks both of you for your response! It gives everyone hope when they see people do well

despite the progtnosis of  this aggressive disease.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2715
Joined: Mar 2013

Thanks for doing this artist!  I know there are a lot of survivors out there who visit and don't post and I hope they will post to give everyone hope.

DX at 49 with type I and II (UPSC staged at 1A) endometrial cancer and feel extremely fortunate it was caught early!  DaVinci complete hysterectomy with a ton of lymph node removal.  All lymph nodes were clear but because it was UPSC it was recommended (and I did) full sandwich chemo (carbo/taxol) / radiation (25 ext/3 int) / chemo.  I think my gyn/onc is BORED with me and sends me to my regular gyn twice a year and vist with him twice a year.  NED but fear creeps in every now and then and I try to push it out of my mind.

The ladies on this site are AMAZING.  I have learned more from the women here and pray for them everyday as I could NOT have made this journey without them. 

I am a different person today than I was before cancer. Life is precious.  Time is precious.  Make sure you tell the people you love just how much you love them everyday.  I know there are women on this board who may attack me (if I don't get my commented erased by CSN) for saying God's touch and love was as much as part of my healing as the doctors and treatment, but I will not get in to a war of words with anyone who disagree.  As I said, I pray for all the warriors out there every day. 

Judemo
Posts: 107
Joined: Jun 2014

Hi! Thank you for sharing! Your personal experiences are yours and no one can take them away NTFC (hope you don't mind me putting NTFC for No Time For Cancer?).  Different people will get help from you saying those words and who cares about others who don't like it....it's your personal story and experience.  Anyway, I'm awaiting results from my conization I had on Monday so then maybe I'll be able to put down more details about what is exactly happening to me.  All I know is they think I have endometrial adenocarcinoma, for sure endocervical CA, but not sure what kind, definitely VAIN, CIN & VIN. I've learned so much from you ladies!! I learn more from you then from my GYN /ONC & his office.  I think I'll get a 2nd op soon. I have been doing lots of research these last several days as I wait yet again for results.  I definitely know I do NOT want to get treatment for my CIN, VIN & VAIN!  So many horror stories from those wonderful ladies who have it over on the "other Gyn cancers" discussion board!! 

Thanks to you SURVIVORS for sharing!  I get so much help from reading your stories! P.S. Nice to meet you Tami! Thanks for sharing!

jude

Ardnasnit's picture
Ardnasnit
Posts: 30
Joined: Jul 2014

Hi, my name is Sandra, I am 39 and I live in VA. At the end of May, I was diagnosed with Endometrioid adenocarcinoma Grade 1 by my GYN after a hysteroscopy/D&C. I met with a GYN/ONC a couple of days later. My surgery was on June 9th. I had a total hysterectomy and staging. At my post-op appointment I found out that my cancer had spread to my myometrium (less than 50%) and that the pelvic wash came back positive. After my surgery I was considered to have Grade 2, Stage 1a Endometrioid adenocarcinoma. I will begin 6 rounds of chemo on Friday, 7/25. It will be a combination of Taxol and Carboplatin. I will also have internal radiation at some point.

My source of strength comes from my family and God. With them I would probably have fallen apart. Shortly after my surgery I found this discussion board and it had been a tremendous help and a blessing.

Judemo
Posts: 107
Joined: Jun 2014

We'll be thinking and praying for you! Let us know how you do ok? I'm awaiting results which I'm supposed to get this upcoming Tuesday. So this is our big week! We can handle it! I'm not going through what you have to go through but my thoughts are with you!

jude

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2715
Joined: Mar 2013

Sandra, if you have any questions please do not hesitate to ask.  I had NO IDEA what to expect and got so many surprises.  The things we aren't told probably out number the things we are told!  Take a breath and I promise you - you will AMAZE YOURSELF!

BTW, it is ok to call me NTFC, I took that name as defiance and to spit in the eye of this evil disease.

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

Sandra:

Do you know whether or not they tested you for Lynch syndrom after your hysterectomy?   It is now common that they do this, especially for someone younger than 54 to get endoemtrial adenocarcinoma.   They didn't do it with me, but just recently they are rechecking my slides from 2005 to see if lynch syndrom is involved because they didn't do those types of testings back then.  If you had someone in your family history that was diagnosed with colin cancer, then it is possible for lynch syndrom.  I think if you are positive for Lynch Syndrom then they will watch your symptoms a little more closely than if you didn't have it.

My best to you.

Kathy

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

I'm 56 years old and I live in Maine. Jan. 26 of this year, 2014 I woke up to bloody pajamas and called the doctor the next day. They did blood work that day. Feb. 3 did a transvaginal sonogram and on Feb 11 did a biopsy and gave me the diagnosis of endometrial adenocarcinoma. March 27 they did a total hysterectomy and removed 13 lymph nodes. I had my 4 week follow up on Apr 9. I was told then that the cancer was contained, it was stage 2, grade 2. Lymph nodes were all negative, pelvic washing negative, and the I was told that it was UPSC not adenocarcinoma like they had thought. It was really scary as she started to tell me that this cancer has a high rate of recurrence, is very aggressive and is incurable when it does come back. I'm currently doing chemo(taxol-carbo). I just finished round 4 and I have 2 more rounds to go, then I'll have 3 rounds of vaginal brachytherapy radiation.

I just went to a naturalist this past week and she said she could find no evidence that I have cancer(but she couldn't say if it's actually gone or if it's the chemo working). She did tell me the cancer came from past stress and that right now my PH is way out of control(.09 acidic). She did say considering everything I've been through so far I'm looking pretty good health-wise. I'll take all this as good news. I will be glad when all the treatments are over. This last round, the anemia has really wiped me out and the tingling in my feet is driving me crazy.

Ardnasnit's picture
Ardnasnit
Posts: 30
Joined: Jul 2014

Hi Jude and NTFC,

Thanks for your support and the prayers. I appreciate all the prayers I can get. Jude I will also keep you in my prayers and pray for good results on Tuesday.

I will let you know how chemo goes on Friday. I have my chemo teaching on Tuesday so hopefully I will be more informed. I will definitely ask questions when I have them. I have been scanning the posts and learning whatever I can from the women who have posted about their experiences. At the moment I am nervous but I know that is coming from the unknown.

NTFC I love your defiance and that you are spitting in the eye of this evil disease.

Sandra

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

I am 52, was 51 at Dx.  I live in Iowa.  Feb. - May 2013, I was spotting or bleeding.  I thought I was getting ready for menopause.  My doc sent me to ob/gyn.  Pap showed two different atypical cells.  June had a colposcopy.  Showed endometrial cancer with serous cells.  Sent me to University of Iowa Ob/gyn oncologist.  Found out from that doc that I had UPSC.  Shock.  July, 2013 had radical hysterectomy and the staging was determined 3A Grade 3.  The cancer tumor in uterus was small but it had already spread to back of pelvis, on left ovary, on left paracolic gutter.  No lymph node involvement.  Aug. 2013 started 6 rds of carbo/taxol. Doctor said radiation would not benefit me.  Finished chemo. Jan. 2, 2014.  At 3 month, am currently in NED.  CA125 not a good marker.  I started a caring bridge blog and between my faith in the Lord, family, friends and caring bridge, that is what got me through.  I have an incredible family.  My 10 year old boxer was by my side and knew when I was having a rough day.  Prayer, Faith, determination and support is getting me through.  I love this discussion board because I, too, have been so educated.   They used the davinci robot and that is what caught the pea sized tumor on the back of the pelvis.  They did a pelvic wash and I can't remember what it was.  I think it was positive.  Thanks for sharing your stories.  I learn so much from you ladies.   I was never married and never had kids and uterine cancer was the last kind of cancer I thought I would ever get.   I have really cut back from eating sugar and fat as I was told that cancer likes sugar and fat.  I am taking more anti-oxidants as supplements and trying to eat as much natural food as possible.  My next appointment will be Aug. 11 and am anticipating that my 6 month check-up will be NED as I don't think I am having any symptoms.   I never realized how slow regaining my strength and stamina is taking.  I am self-employed as a massage therapist and I was out of work from the end of July until April and am just now only doing half hour massages, about 6 per week.  I have applied for disability, so we'll see what happens.  So far, all bills have been paid.  My church, family and friends sent me checks to help me get through.  I feel totally blessed.  I have found that you have to make these things fun and I had to help people more comfortable.  I am more thankful and make sure I tell others what I am thankful for.  I'm probably telling you all more than you wanted to know, but I have to tell you, I don't ever want cancer again, but I would never trade the experience I have had.  The love and generosity of people, my life and perspective changed, my spiritual walk with God.  I have a peace deep in my soul like I've never had before.   You ladies are amazing. 

Judemo
Posts: 107
Joined: Jun 2014

Thank you IT Happened to me (IHTM).....beautiful!

joannewtta's picture
joannewtta
Posts: 43
Joined: Jul 2014

Wow, your story could be mine. I'm 68 now and was dx in June 2013 one month after my husband was diagnosed with kidney cancer. He had kidney removed June 26 and I had surgery o July 10. It is uterine papillary serous carcinoma and I was diagnosed stage 3c with one bad pelvic lymph node involved. My chemo was 3 weeks on and one week off with Neulasta shot after third chemo. Total of 18 chemos with four bracytherapies in February 2014' just had second post checkup and good news so far. CA125 tumor marker is down to 11 and ct scan is clear. I'm getting strength back but it sure takes time. Feeling good and so grateful for the family and friends that got me through this. Wish I had discovered this site sooner. I'm glad to share anything I can with someone else that is on this same scary journey. At least my husband and I are in this together and we certainly understand the emotions. Gary had a kidney out but no chemo or radiation. He has very small tumor on his other kidney and we are just watching it. Married 49 years and never thought we would share this. 

txtrisha55's picture
txtrisha55
Posts: 685
Joined: Apr 2011

Trisha. Current age 57  58 in 10 days. Dallas, Tx. Doing ok. Dx April 1st with Uterine cancer after bleeding for a month and having a D&C.  Surgery on April 8 2011. 6 cheno treatments no radiation. On 6months checkups now. Great hosiptal and dr. UTSouthwestern in Dallas and Dr. Lea. Doing good getting ready to hit 3 years from last treatment 22August. Dancing with NED everyday and enjoying my life.  Do not post that much anymore cause busy with work and family. Trish

survivingsu's picture
survivingsu
Posts: 134
Joined: Apr 2013

Hi,

I had a rare form of uterine cancer - undifferentiated small cell carcinoma back in 2009.  I underwent chemo/radiation simultaneously, then surgery, then follow-up chemo.  While treatment was rugged, and took a while to get over, I'm doing great now, went back to work after my treatment and periodically get CTs, lab work, exams.  It's been five years since my diagnosis in July, and will be 5 years since treatment in December.  I'm very glad to be alive!

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

Hello Everyone.  

I am Kathy - I am from Jefferson Hills, Pennsylvania (southeast of Pittsburgh)

Age at diagnosis:  45

When diagnosed:  After a routine hysterectomy in Sept of 2005. (I was placed on Lupron for six months prior to my surgery to help soften the lesions).  Then after the pathology came back, I had to go for another surgery for staging in Oct. of 2005.   They didn't find any other cancer.   However, since the cancer was found in my uterus and in my left ovary, I was treated as ovarian, even though it was finally concluded that I had Stage 3a, Grade 2 Endometrial Adenocarcinoma.  But they were never able to find the origination of the cancer.   They thought it might be MMM but ruled that out.

Treatment:   Carbo/Gemzar (I had a reaction to Taxol) then 3 brachytherapies.   Unable to do pelvic radiation (gyne/onc wanted it but radiation/onc did not due to my extensive scarring caused by the endometriosis.

Recurrence:  Had a small mass by my rectum - it was there from the initial surgery.  However, in 2009, one of my physicians thought it was a recurrence.  Even though the CT scan, MRI scan, and PET scan did not indicate anything, a biopsy revealed endoemtrial adenocarcinoma again.   Therefore, I had this removed by a totally different doctor due to the fact that the current one at the time indicated that it was inoperable and they wanted to start chemo, then surgery, and indicated that I may have a permanent colostomy.   Had the surgery in Feb of 2010 and the mass was tested negative.  But a lymph node tested positive for microscopic cells - no treatment - just a wait and see approach.

Curent Status:  Once again, I have a soft tissue mass which has been noted since at least 2010.  However, recently it has grown.  Although it is still in the normal or slightly over normal range on a PET Scan (it is now a 3.2 from a 2.4), I did have this biopsied and it resulted negative.   However, I now have moderate hydrouteronephrosis and as of July, it is starting to cause damage to my left kidney.   I have in my process of finding an Urologist to put in a stent prior to or just have the mass removed.

In the meantime, I am very active and work full time.

Kathy

sunflash's picture
sunflash
Posts: 197
Joined: Aug 2011

UPSC was discovered after I began having atypical endometrial cells (AGUS) pap smears at the age of 58, which was June of 2011. 
All tests prior to my hysterectomy, including both an endometrial biopsy and a vaginal ultrasound were considered "normal" with no indication of cancer. My pap smears were sent through pathology by my oncologist, since I had received treatment for vaginal cancer in 2007 (age 54) and was still being watched carefully. UPSC was confirmed (4.5 MM polyp) after the uterus was cross sectioned during the pathology process. 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. On a side note, prior to vaginal cancer I had never had an abnormal pap smear, and faithfully had one every year.  

I'm a teacher and worked during both cancer treatments. My very dear sister (retired teacher) became my sub during days I missed for chemo and recovery. I don't think I could have done it without her!

I'm doing fine, now and count myself as very blessed for having gone through cancer treatment twice and emerging with no long term side effects. I'm still being watched carefully by my doctor, who says I need to see her for life. My checkups have just gone to 6 mth rather than 4 mth visits. 

Best wishes to all the warrior ladies here! We're in very good company! I gain inspiration from each and every one of you here!

PS  Forgot to say I'm from Houston Texas 

Mary27609's picture
Mary27609
Posts: 22
Joined: Jun 2014

Thanks for this-- I feel like I need to do an emotional download and have been looking for a safe place to do it.

I'm Mary and I live in Raleigh, North Carolina. I will be 54 a week from Saturday. I'm having a bad day and I don't really know why. My surgery was a year ago today-- the day Prince George was born. Televisions all over the hospital were tuned to the news and so as long as the media keeps track of his birthdays-- I'll be reminded. I never ever thought I'd mind being reminded. The day went very well. I love my surgeon (she's now my Gyn)-- she used the DaVinci robot so only four tiny slits. I had been diagnosed after a D&C earlier in the month, so there was no bad news after the surgery.

I went home the next morning and recovery was smooth. I was back to work in three weeks. Chemo was much harder :) Of course I didn't know that yet. But now today I'm sort of weepy-- fighting it, but it's enough to distract me.

Which brings me to a question I've been meaning to ask. I had a radical hysterectopy-- everything including ovaries. But I still feel a sort of a cycle. I have a week every month where I'm cranky and a bit bloated and headachy. I thought this would all be GONE. And it's a year later.

I have a 22 year old daughter at home-- I know females match cycles and our bitchy weeks do match :)-- the week before she gets her period. Is the affect of another female that strong? Or are there residual hormones still cycling in me for this long? I thought I was mid-way through menopause already when I got sick-- now I feel more hormonal than I had in years. 

ANYWAY-- enough with the questions :). I was diagosed as Stage IIIc1 Endometrial Cancer-- ovaries and cervix not involved but some evidence in pelvic lymph nodes. After surgery I had three rounds of chemo (Carboplatin/Paclitaxel), 25 doses of external radiation and then three more rounds of chemo ending on February 26.

I had a CT-scan and also an MRI in May (there was a shadow on my liver in the CT-scan). My doctor reported no evidence of disease on May 27. Coming up on two months cancer free.

My emotions have surprised me the most. The medical side effects I was warned about, knew about and wasn't ever surprised. I certainly had miserable times, but there was a goal and I knew I was supposed to feel miserable. This emotional stuff has really thrown me for a loop. I was fine during treatment-- better than I ever expected to be-- driven and focused. But since it's ended I'm just a big bag of fear and apprehension. Bleh. Anyway-- I've posted about this before and have gotten wonderful responses and great advice. I have pockets of thankfulness and joy and I have faith that it will get better. It was just very surprising.

I'm enjoying reading all of your stories-- the best thing is knowing I'm not alone.  

 

 

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

Hi Mary, I hope you're past the "weepies" now. I have problems with that myself. The past couple of days, in fact. I went to a naturalist last week and some of the herbs she gave me she said may bring on the emotions. But even before that I'd think things were going along fine and then they'd hit me. Maybe it's just a release we need every so often. Hope your feeling better today.

Kathy

Mary27609's picture
Mary27609
Posts: 22
Joined: Jun 2014

Thanks, Kathy! I feel so much better today I can't believe it. Yesterday was so strange.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2715
Joined: Mar 2013

Mary, I think it all just takes time.  For some crazy reason when I was sick (and BTW that is the way I refer to my cancer) all I could do was worry about when my sisters would travel. I was terrified that something would happen to them and made them call me and tell me they were ok.  I have gotten better about it but every now and then I just worry about them.  

It has been two years for me and even though it wasn't anyone's birthday, I email my sisters and friends, "Today in history" and remind them of surgery, chemo, whatever.  Dates in 2012 are very ingrained in my memory and I think it always will be. I do think the first year is the hardest as it is always, "this time last year...."

Please don't be hard on yourself.  Take a breath, try to roll with it, and ask for help it you need it.  Remember what you just went through and did to your body!  It is pretty wild and you MADE IT!  

Take care 

Mary27609's picture
Mary27609
Posts: 22
Joined: Jun 2014

"When I got sick" is the only thing that makes sense to me. I figure the cancer was around for awhile (who knows how long!) before I got sick. I worry more about family too-- to the point where my daughter said that she and her father don't tell me about it when little things go wrong-- which has only made me crazier. I do have a feeling I'm going to be reacting to sickness/treatment/NED anniversaries for awhile at least. OH WELL! As long as I'm still here to drive everyone crazy-- that's all that matters :) And I feel so much better today.

Ann55
Posts: 48
Joined: Jun 2013

Hi ladies,Ihaven't posted for awhile,didn't want to scare the newbies! I was diagnosed in April 2013 at age 58 UPSC stage 3C I'm a nurse and never thought I was wonderwoman but did think I had a few super powers!well then the kryptonite started.Surgery was first and I did great,then taxol and carbo,was the less than .25% that couldn't tahe taxol and was changed to taxotere.Sandwich treatent consisted 3 rounds of taxotere followe by 28 external radiation,3 internal radiation and 3 more taxotere.3 weeks later the CT showed new pelvic nodes and new peritoneal areas!Started on doxil and did really good for the 1st 2 treatments,on the 3rd treatment my feel and palms blistered,the size of baseballs On Memorial day I was admitted to the local hospital with neutrapenic fever and was hooked but with the local oncologist office which was a blessing. I know I need UNC and there specialist but our local practice has been a blessing.They are so concerned with the way I feel following treatment.During the hospitaliation one of the blisters lost lost the protective skin covering the wound nurse felt my feet shoud be covered so I didn't pick up a nasty bug in my weakened state and I agreed.Unfortunately I have  new blisters breakout and could 't have another treatment with doxil for 2 months.My fear was that this amount of time would give the beast time to mutate because it was looking like I was getting some good resutls from the doxil in spite of the side effects.UNC said they had never seen such a severe reaction.2 weeks later started vomiting and diarrhea that was like a 3 week colonoscopy prep,had to go in for hydration and they were able to break the cycle with iv antiemetics,po zofran,phenergand  and compazine did  nothing to help and I was going to be placed back in the hospital but was able to convince oncologist hosptals were no place for sick people.I was given 1 day to turn it arouond ane praise the Lord it worked!I finally received my 4th doxol at a lower dose and on massage doses of steroids prior to during and after the treatment.These steroids are about to work me to death,ha ha.3 weeks after the 4th dose I had a CT scan to see if I would receive and 5th and 6th doses and low and behold despite of going two months without a treatment,I received a call before I even got back home and the result were NED! I received a treatment on Friday and will get another in Aug.The plan is not to let me go 3 months without and eval but to repeat another CT 3 weeks after the 6the treatment and if I'm NED again I will be free as a bird for 3 months.So much joy with my friends and family right now so don't give up hope ladies! I'm not 100% sure yet what God is wanting me to learn but I wonder if I was to content and needed to be reminded of what a blessed person I was because I am much more aware of my many blessings.Husband,daughters and son's in laws,grandchildren,siblings and wonderful and faithful friends.Praying this dance with NED last and last! I was the only person in chemo Friday and a treatment and a pedi at the same time,now that is what a awesome family does! 

Ann55
Posts: 48
Joined: Jun 2013

Hi ladies,Ihaven't posted for awhile,didn't want to scare the newbies! I was diagnosed in April 2013 at age 58 UPSC stage 3C I'm a nurse and never thought I was wonderwoman but did think I had a few super powers!well then the kryptonite started.Surgery was first and I did great,then taxol and carbo,was the less than .25% that couldn't tahe taxol and was changed to taxotere.Sandwich treatent consisted 3 rounds of taxotere followe by 28 external radiation,3 internal radiation and 3 more taxotere.3 weeks later the CT showed new pelvic nodes and new peritoneal areas!Started on doxil and did really good for the 1st 2 treatments,on the 3rd treatment my feel and palms blistered,the size of baseballs On Memorial day I was admitted to the local hospital with neutrapenic fever and was hooked but with the local oncologist office which was a blessing. I know I need UNC and there specialist but our local practice has been a blessing.They are so concerned with the way I feel following treatment.During the hospitaliation one of the blisters lost lost the protective skin covering the wound nurse felt my feet shoud be covered so I didn't pick up a nasty bug in my weakened state and I agreed.Unfortunately I have  new blisters breakout and could 't have another treatment with doxil for 2 months.My fear was that this amount of time would give the beast time to mutate because it was looking like I was getting some good resutls from the doxil in spite of the side effects.UNC said they had never seen such a severe reaction.2 weeks later started vomiting and diarrhea that was like a 3 week colonoscopy prep,had to go in for hydration and they were able to break the cycle with iv antiemetics,po zofran,phenergand  and compazine did  nothing to help and I was going to be placed back in the hospital but was able to convince oncologist hosptals were no place for sick people.I was given 1 day to turn it arouond ane praise the Lord it worked!I finally received my 4th doxol at a lower dose and on massage doses of steroids prior to during and after the treatment.These steroids are about to work me to death,ha ha.3 weeks after the 4th dose I had a CT scan to see if I would receive and 5th and 6th doses and low and behold despite of going two months without a treatment,I received a call before I even got back home and the result were NED! I received a treatment on Friday and will get another in Aug.The plan is not to let me go 3 months without and eval but to repeat another CT 3 weeks after the 6the treatment and if I'm NED again I will be free as a bird for 3 months.So much joy with my friends and family right now so don't give up hope ladies! I'm not 100% sure yet what God is wanting me to learn but I wonder if I was to content and needed to be reminded of what a blessed person I was because I am much more aware of my many blessings.Husband,daughters and son's in laws,grandchildren,siblings and wonderful and faithful friends.Praying this dance with NED last and last! I was the only person in chemo Friday and a treatment and a pedi at the same time,now that is what a awesome family does! 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2715
Joined: Mar 2013

Ann, alll I can say is "wow".  Warriors AMAZE me and you are among them. 

StrongerthanIthought's picture
StrongerthanIthought
Posts: 55
Joined: Feb 2014

My name is Barbara. I live in Fairfield CA about 1/2 way between Sacramento and San Francisco.

 I was diagnosed with a biopsy by gyn after I told her about slight bleeding.(She called me with the results Jan '14). It was my only symptom and I went to her right away. Pathology following hysterectomy staged me with Endometrioid adenocarcinoma 3C grade 2. Also my vagina tore during hysterectomy.  I have had 6 chemo treatments, 3 weeks apart. I have also had the radiation simulation CTscan. Will probably start external radiation next week. Internal is planned after that. 

Chemo wasn't as bad as I had imagined. Do have neuopaty in my feet tho. Hoping radiation treatment is equally tolerable.

My chemo onc told me my 5 year survival chances are 40%. I didn't ask and didn't want to know. But now that I do - I can get pretty weepy and upset very easily.  I'm not ready to be done here. My husband & I are helpiing raise our two grandchildren (their mother is ill) ages 5 & 7. My work & fun isn't done so I'm going to do everything I can to fight back.

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

Hi Barbara, sorry to be meeting under these circumstances but I just have to say take those odds and throw them out the window! You can get hit by a bus sitting on your sofa this evening- What are the odds? but it could happen. Don't let those numbers scare you! Your attitude, your determination, your health, your love of life.... those are your "odds". stick to them. Doctors don't know everything... that's why they're practicing medicine!

 

StrongerthanIthought's picture
StrongerthanIthought
Posts: 55
Joined: Feb 2014

Thanks Kathy,  I'm trying. I liked your attitude - printing out your response so I can keep it in sight when I need it.

Barb

Double Whammy's picture
Double Whammy
Posts: 2827
Joined: Jun 2010

Barbara, I'm right up the road from you - in Woodland. 

Dx'd in 2010 with Stage 1a, Grade 1 endometioid adenocarcinoma and breast cancer.  NFT for endo cancer except followup and I  see my gyn/onc Monday for my regular, now routine check.  In fact, I was planning on trying to talk him out of any more appointments.  Changed my mind as a good friend was just diagnosed with mets from kidney cancer diagnosed in 2009.   Keep up the follow-ups, it gets better with time, but there are no guarantees for any of us.

I hope you will gain more confidence as time passes.  I was quoted survival rates (for breast cancer) with and without chemothereapy and then radiation.  With treatment (and time) the survival rates get better.  Now, that was for breast cancer, but all survival rates do improve with treatment - or they wouldn't do treatments.  Since it's not possible to UNhear what you've been told, it might be worthwhile to have a conversation with your oncologist asking her to explain her statistics.  It may well be that that 40% number is a different number AFTER you have completed treatments.  And that may bring you some peace of mind.  There are definitely many women on this board you are thriving after 5 years.

Now, I have to ask:  how the heck did your vagina tear during hysterectomy?  Ouch.

Welcome.

Suzanne

StrongerthanIthought's picture
StrongerthanIthought
Posts: 55
Joined: Feb 2014

Hi Suzanne,   Thanks for the welcome and reply.   I don't know how the tear happened. Didn't even think to ask - they catch you when you are all doped up and then later throwing so much info at you it is hard to think.   Of course, I was asleep when it happened.  I had a laparoscopic total hysterectomy. They did keep me over night and all of next day and I had some kind of packing inside.  I only mentioned it because it makes me think  - just another way for cancer cells to spread instead of stay contained. I had my surgery at Kaiser Sacramento.   My first  radiation treatment is Monday.

Barb

cheerful
Posts: 255
Joined: Apr 2011

 I am currently 63 years of age and when I was diagnosed I was 59 1/2. I live in a suburb of Delaware County, PA.  I had my surgery and chemo treatments at Crozer Chester Medical Center in Upland, PA. I am currently with NO evidence of disease.

  I was diagnosed in February of 2011 with UPSC and my cancer was 5 centimeters. Presumably, Stage 1.  I had heavy bleeding for about 6 months so I had surgery. I did not have my omentum removed or lymph nodes sampled as my gyn did my surgery.  After I was diagnosed with cancer in the hospital, my gyn introduced me to a gyn/oncologist and then I found out about 3 weeks later that it was UPSC.  My gyn/oncologist recommended very aggressive cancer treatment of chemo even though it was an early stage although I understand that anyone diagnosed with UPSC since it is such a rare and aggressive cancer, that chemo is recommended for all stages of this cancer.

  I went through 6 rounds of chemo of carboplatin and taxol starting in April of 2011 and finished with chemo in August of 2011. I then went through 3 rounds of vaginal brachytherapy and finished in October of 2011.  I am very grateful that my cancer was caught early.

 I have had several cat scans (3) alone in 2011 and they all came back with No evidence of disease for which I am very grateful and thankful. I also have had scans done every year since and so far I am still with No evidence of disease.  My latest cat scan was in March and that came back with No evidence of disease.  I saw my oncologist in April and my pap smear came out fine.  I had my CA 125 done the end of May and that was No. 7.  I am very grateful that I am still with no evidence of disease and it is well over 3 years.   I go back and see my oncologist in mid October for a 6 month checkup.   I see my gyn/oncologist 2x a year.

  I have changed my eating habits for the better and am eating a lot healthier.  Getting diagnosed with UPSC is very scary and it is such a rare and aggressive cancer.  I am enjoying life each day and keep in very close contact with family and friends.  I truly had great and wonderful support from family and friends when I was going through my cancer journey. 

Cheerful

a/k/a Jane

  

  

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

My name is Roberta.  When I joined this forum I was the 10th person to sign in thus the user name Ro10.  Now how many more members there are.  It is so sad that there are so many of us.  I was diagnosed in Jan 09 with UPSC Stage 3-C.  I had no symptoms.  I went for a routine PAP test and it showed abnormal cells.  I had a colposcopy which was highly suggestive of adenocarcinoma.  MY gyn referred me to a gyn/ono.  Both of these doctors felt all I would need was a hysterectomy, so I was shocked when I came out of surgery and found out I had an aggressive and rare type of cancer.  In the hospital the doctor told me the cancer was treatable but not curable, so I have never been looking for a cure but thinking of it as a chronic disease.  I had robotic surgery so I was only in the hospital for one day.  The doctor told me I could start chemo soon. 

Initially I had the sandwich treatment with Taxol/Carboplatin and 28 external radiation treatments with a 28 hour internal radiation treatment.  I had a reaction to Taxol right away, so I have to have it very slowly.  I had an 18 month break from chemo and had 3 more treatments of Taxol/Carbo.  I had a severe reaction to Carbo so I was switched to Cisplatin and had 4 treatments of Taxol/ Cisplatin.  As soon as I go off chemo my CA 125 begins to rise.  It got as high as 1700 when I had ny second round of chemo.

I had only 7 months before my CA 125 went to 3200 and I needed chemo again.  I had 6 more Taxol/Cisplatin treatments.  I never had any symptoms with my recurrences.  The CAT scans indicate when its time to start chemo again.  Due to my reactions to the chemo drugs it takes me 8 hours to get each chemo drug, so I spend two days getting each treatment.  But at least I can still get the taxol and platinum drugs.

I developed bilateral pulmonary emboli (clots in lungs) which was caught incidently on a routine CAT scan.  I have been on daily Blood thinner shots since 1/2012.  Again I had no symptoms.  Even though I have had chemo 3 different times, I have minimal neuropathy or any other side effects from the chemo.

I am currently taking Aromasin which is an Aromatase inhibitor.  It seems to be helping to slow the cancer growth.  It does have joint pain and hair thinning as side effects for me.  I wear a hat when I go out as I have male balding tendency......a nice bald spot on the top and back of my head. 

I try to eat healthy and exercise with walking and gardening.  I try to be around positive people.  I find joy in each day and thank God for every day (and many years) I have had.   I do take biocurcumin.  My husband read that the blood thinner shots slow cancer growth, but I would not recommend that to anyone. 

Currently my CA 125 is 1582, and my latest CAT scan shows one lymph node that has increased in size in the last year.  Waiting to see if I am candidate to have node removed or reduced in size with cyber knife radiation.  I hope that my journey will give hope to others.  Take it all a day at a time.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Hi, I'm Helen, I'm 56 years old and I live on the south coast of England, in the United Kingdom. 

I had a hysterectomy in 2001 (when I was 43) for suspected cancer (they had found atypical hyperplasia at D&C).  However no cancer was found in hysterectomy pathology and I was told I was cured  and as no cancer was found, I needed no further treatment. 

7 years later (!) I had bleeding and a "recurrence" of Grade 1 cancer was found at the vaginal vault.  I had 6.5 weeks of radiotherapy and was NED for 2.5 years.  Then another bleeding episode and a further recurrence was found at the same site.  This time, it was major debulking surgery, including a colostomy, followed by 6 rounds of carbo/taxol chemotherapy.  I was NED for a further 18 months, then another recurrence was found on left pelvic sidewall.  Now not operable, due to nerves and vessels running through it, so started on Letrozole (aromatase inhibitor).  Tumour shrunk by 50% and stayed there for about 14 months before starting to grow again.  Changed therapy to progesterone, but tumour continued to grow (now measures 4.1 cms).  Now trying Tamoxifen (only been on it a month) and waiting for date for Cyberknife treatment at The Royal Marsden Hospital in London (world renowned cancer centre).  

I try to live in the present and don't think too far into the future - it's too scarey!  My current quality of life is good, I have wonderful husband, family and friends who support me.   I have had such great support from the ladies on this board - I just wish we hadn't all had to meet under these circumstances.

Helen

pinky104
Posts: 574
Joined: Feb 2013

I am a 65 year old from Schuylerville, NY.  I was diagnosed at 61 in March of 2010, had surgery in May of 2010 at St. Peter's Hospital in Albany, NY, and 6 rounds of chemo (carboplatin and taxol) at Glens Falls Hospital, where I worked, starting in June, 2010.  My stage at diagnosis was IVb.  I had UPSC in the uterus, both ovaries, the omentum, and the small intestine.  No lymph nodes were involved.  I also had my gallbladder and appendix out in the same surgery.  I was in the hospital for 6 days.  I had two units of blood when I was in the hospital because I had lost so much blood and one while I was undergoing chemo for chemo-induced anemia.  I am still slightly anemic.  My CA 125 at the worst was 94.  I've had 3 CT scans since surgery.  I had one in May of this year because I had abd. pain.  Nothing was found on the side where I had the pain, but a small mass was found in the peritoneum on the other side. I had a PET/CT a week later which showed the same thing.  My CA 125 in June was lower than it ever has been since surgery, in the 6's, so the docs aren't sure what the mass is.  I have to go back in Sept. to have another CT to see if it's grown.  If it has, I'll have surgery again at that point.  The abd. pain totally went away while I was on vacation this month, but I've had it occasionally since I've been back.  I wonder if it's diet-related or from something else in my environment.  I haven't had any complementary treatments.

I figure that if I expect the worst, things will either turn out as I expect or be better.  I have several friends praying for me, which also seems to help.

My mother had breast cancer twice in two different spots in the same breast, her mother had it once in both breasts, and my father had prostate cancer, so the tendency to get cancer certainly seems to run in my family.   It didn't kill any of the relatives (they have all since died of different causes many years after having cancer). 

I was diagnosed with hemochromatosis three months after completing chemo and then had to have three phlebotomies to remove the blood with excess iron I had in my system.  I thought that was ironic (no pun intended) after having had it put back in there with transfusions just months before.  And then, when I had my phlebotomies, too much was taken out too fast (I couldn't handle it because of having had chemo so recently), so I was anemic again.  I was admitted to the hospital overnight at that point.  I have been  slightly anemic ever since, but at least I haven't needed any more phlebotomies.  

I feel reasonably healthy for my age now, so I'm hoping the mass in my peritoneum is just a fluke.  One of the employees in my gyn/onc's office speculated that it could be fluid from having my lymph nodes removed.  She said that sometimes it accumulates years after surgery.  I'll know in September, hopefully.       

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Hi, Ladies,

My name is Cathy and I live in central Florida. I am 61-years-old.   I had symptoms one day only on September 27th, 2013,- two small drops of blood- and since at the time I was 60-years-old and post-menopausal, I saw a gynecologist immediately. I had a PAP test and an ultrasound. The PAP test captured some residual blood and adenocarcinoma was found.  Initially I was told that I had uterine cancer, but when I was referred to a gynecologic oncologist, he told me that a biopsy would determine whether or not I had uterine cancer or cancer of the cervix.  Just a few days before my 10/28/13 surgery, I learned that I likely had grade 2 uterine cancer. I had the standard surgery and my gyne onc removed lymph nodes and did a pelvic wash.  My omentum was not sampled or removed. On 11/7/13, I learned that I had stage 111A UPSC with positive washings. My lymph nodes were negative. Cancer was found in my uterus, one fallopian tube and one ovary.  Since my surgery I have had a PET Scan, a CAT scan and two ca125 tests and all indicate NED.   I had 6 rounds of Carboplatin and Taxol. My last chemo was on March 20,2014.   No radiation was recommended. I now have neuropathy in my toes.  I return to see my gyne onc next month and will have another ca125 test in about two weeks prior to seeing him.  As my ca125 test results have been normal, I am not sure this test is a good marker for me.

Where do I get my strength from?  I am motivated to live a long and healthy life and enter my 90's like my parents did.  I have a tremendous support network of family, friends and coworkers, including all of you, and I feel blessed by that.  I am continuing to work full-time and did so throughout my chemo treatment: it seems the "normal" routine helped me cope. In spite of the UPSC diagnosis, I feel hopeful and pray that I will continue to feel as good as I do now.  I believe that regular and frequent aerobic exercise coupled with a diet of lots of fresh veggies and fruit will help me conquer this disease.   

   

ellen5121
Posts: 6
Joined: Jul 2014

Good Morning:

I am newly diagnosed with UPSC (July 2014) and will have surgery in mid-August. I have been reading many of your supportive and informative posts and am so glad to know how many of us are out there. While trying to stay focused, organized and positive, this has been very hard....feeling close to the brink of freaking out, but this is not my normal m/o. I've always been the strong, caretaker in my family, so this diagnosis and what is inevitably ahead has turned everything upside down for me. The waiting has been hard and since I feel fine now, it's hard to imagine the changes that are ahead and all of the unknowns. I stilll have one week left at work and so much to do. It's not really helping to be told .... just take care of yourself now...Nothing I can do but wait and try to stay off the internet cancer web-sites which are anxiety producing, but informative and, for me, a bit of an internet-junkie, addictive. In terms of basic info. about me: 61 y.o.; in NYC (Brooklyn); so far, friends and family (no children) have been a source of strength, comfort and diversion; will be interested in learning more about complementary medicine/healthy life style after surgery/staging info and course of traditional treatment is known.

So appreciative to be joining this knowledgeable and supportive group.

 

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Sorry you have to join us.  I find it interesting that you have been diagnosed with UPSC before your surgery.  Most of us did not find out we had UPSC until we had the surgery.  It is very scary to hear any cancer diagnosis.  We can all relate to that fear and especially the fear of the unknown.  

I hope your surgery goes well, and you have a low stage.  Do you know if you will have robotic or open hysterectomy?   I would caution you about searching the internet as much of the information is outdated and very scary.  I was diagnosed with UPSC stage 3-C in 1/09, and I am still here.  I have had three rounds of chemo, and I would say I am still thriving, so don't let the statistics you read scare you.  I think of this cancer as a chronic disease.  As many have said " you are a statistic of one".

I would recommend reading posts from this site as this is current treatments and success of those treatments.  Unfortunately we have lost some sisters but their stories tell of their fight and courage to combat this cancer.

i send you well wishes as you begin your journey and come back with any questions you may have.  In peace and caring.

ellen5121
Posts: 6
Joined: Jul 2014

I had a biopsy following PAP smear and after lots of initially optimistic (99% sure it's just a fibroid....) speclations, was told in early July that it is UPSC. Then went to gyn/onc/surgeon who confirmed dx. She indicated that robotic surgery is likely, but won't know definitively until pre-testing is conculded this week and then indicated though  unlikely small chance that even if robotic is planned, sometimes switch to regular surgery is necessary. Surgeon seems to be very experienced in robotics so hoping this is route for me. Thanks for your response, Ro10. Really needing encouragement....dreading the weeks ahead.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2715
Joined: Mar 2013

Ellen, try to take a breath.  This is really one step at a time so I would recommend not getting too far ahead of yourself.  (Easier said then done)  Please come and ask us any questions in the coming weeks and months.  There are lots of beautiful women here who will tell you about their experience, what they did to combat whatever is ailing you, and how to work through the treatment prescribed. 

Sorry you have had to find us but you landed in a good place. 

DebiR
Posts: 37
Joined: Jul 2014

I haven't really had a chance to post my story yet (and I will get around to it soon) but mine is very similar to yours except it took me from September 2013 when I got the results of an abnormal PAP to my diagnosis in April 2014 of UPSC (more about that later).  My biopsy pre-surgery also revealed the type it was.  I consider myself very fortunate in this regards as it meant I was automatically referred to a GYN ONC.  And it also meant they took ALL the extra precautions and I had the pelvic wash, lymph node removal etc. etc.  You have that same good fortune!

My surgery was 5/19 and was robotic.  Like you I was told they keep the option to do a full abdominal if necessary.  My uterus was very small so no problem at all with the robotic (it was the first thing I asked about when I woke up).  It was a matter of whether or not they could safely remove it intact vaginally.  I am stage 3A with microscopic cells found in both ovaries and the pelvic wash.

I took two weeks off work and then was ready to go back.  I do work from home so that made it a lot easier as I really didn’t have to be up and dressed for work every day.  I might have taken more time otherwise.

I started chemo on 7/16.  My second one is tomorrow.  I’m doing the standard 6 rounds of carbo/taxol. 

I love positive affirmations so I will leave everyone with one of my favorites. 

Life isn’t about waiting for the storm to pass.  It’s about learning to dance in the rain!

Debi

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I am sorry you have to join us.  It is a journey none of us would freely chose,but it is doable.  Glad you have your first chemo completed.  I know my first chemo was scary.  It was fear of the unknown.  Not knowing what the chemo would do, and what side effects I would have.  I have to say that  it was not as bad as I had anticipated.

As a nurse I had given chemo in the hospital and seen patients experience terrible side effects.  The pre meds they give you are wonderful.  They give you medicines to take after chemo too.  Just remember to drink lots of fluids, and keep ahead of the constipation.  Apple juice worked great for me.

i guess by now you have lost your hair.  Baby oil to the scalp helps the itching.  They recommended a silk pillow case to help the tenderness when sleeping.  I guess it helped some.  

I hope your second chemo goes well.  Keep up the positive thoughts.  Comeback with any questions you may have.  In peace and caring.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

When I read your first post, I was reminded of how completely terrified I was when I first learned that I had uterine cancer (October, 2013) and then after my hysterectomy, UPSC stage 3A.  That was last November, 2013.   There were times when I wondered if I was going to lose my mind due to the constant terror I felt. Yes, I felt close to the brink of freaking out, as you mentioned.  It seemed that there wasn't a moment in a day when I was not thinking about my cancer.  I felt obsessed with trying to find out as much as I could about UPSC and any other aggressive uterine cancer. Whew!  I am exhausted just reading what I just wrote!  As bad as a cancer diagnosis is, it does get somewhat easier to live with it as time goes by.  I can now "forget" my cancer and enjoy life like I did before cancer.  I don't think about it all day long and I am not as interested in reading about UPSC. I am becoming more positive each day!  Some of the women here, like Ro10, Kaleena, Jazzy, DoubleWhammy and Trish to name just a few who have been posting for a long while, have been inspirations to me.  Their encouragement, positive attitude and love of life is infectious.  I know you didn't choose this, Ellen, but I believe you will be able to handle it with time.  I wish you the very best with your upcoming surgery. Please keep us posted.

Wish you the very best!

Cathy   

mobmob's picture
mobmob
Posts: 14
Joined: Jun 2012

Mary, Oakland, CA, age 57. Diagnosed in Oct. 2010. At diagnosis I had stage 4 endometrioid adenocarcinoma. I don't remember hearing my precise grade. I remember when I asked about that the doctor said, "It's high grade."
I was diagnosed because I had an earache that wouldn't go away! The doctor was just about to send me off with a prescription for a broad spectrum of antibiotics, when I said. "Just one more thing. I've been having balance issues." The doctor sent me that moment for a CT scan of the head. The technicians who did the CT scan balked at doing the scan at first. "This does not follow protocol." They called my doctor to tell her they couldn't do the scan. Then, afterwards,after they did do the scan, they were clearly aghast and said, "Why exactly did your doctor decide to order this test?" (high-pitched voice)
Two brain metastases were found.
--Long story after that. I ultimately had eight brain metastases, all of which were treated with Cyberknife.
Six of the eight tumors vanished after Cyberknife treatments.
It is exceedingly rare for endometrial cancer to move to the brain only, but that is what happened in my case.

For the endometrial cancer, I had a hysterectomy and had taxol and carboplatin in three week intervals, six sessions, which seems like a common treatment. 
I'm currently having CT scans of the abdomen every six months and MRI of the head every three months.
My endometrial cancer screenings have come up with the occasional cloudy area on a scan which have been determined to not be a concern. I have two remaining brain mets which are not a problem as long as they don't start to cause seizures, severe dizziness, or confusion. The brain specialist says they might go away or they might never go away. (Cyberknife is a one time treatment usually. I have one tumor that was treated twice.)
So far so good.
My most difficult remaining symptom is leg pain, deemed neuropathy-related pain. I am one of those people with an invisible disability and people think I look fine and therefore must BE fine.
I walk every day and that is what confuses people. Walking is possible despite the leg pain. It is what my physical therapist prescribes and it just so happens walking is my favorite exercise. 
I believe people's source of strength is primarily within them. All the people who make up your circle of family and friends are great, but it's what's inside of you that brings you through. I don't know if it's possible to alter that. It's either there or it isn't. People kept telling me I was handling my situation "well" and I just would think I handled it based on who I am. There's no handling it "well" or "not well" (I believe if you meet someone not handling things well, maybe that's what they need to do. Who are we to judge?)
 --Everybody has to find their own way and meaning and whatever they do is never wrong.
Anyway, I'm glad to still be on the planet. All my doctors clearly thought I was not going to be around for very long. It really is true that you never know, you might be the person who beats the odds.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Mary, thank you for sharing your story, as it is truly incredible.  I agree that our source of strength is primarily within us. I once worked on a rehab unit in a general hospital.  This was a rehab unit that treated patients with a multi-discipline team including docs, RNs, physical, occupational and speech therapists, social workers and psychologists. These patients had fractured hips, strokes, COPD, traumatic brain injuries , cancer, etc..  What continually amazed me was the remarkable progress some of the most disabled and sick patients made. They had some things in common: A clear sense of purpose, an inner strength and a strong desire to recover.  Many patients with far less serious conditions did not do so well. Perhaps here's a lesson for all of us fighters here.

Warm Wishes,

Cathy

Bongo2
Posts: 1
Joined: Sep 2014

of the Uterus!

Extremely rare, aggressive, only a few cases in medical reports

Had hx of fibroids & then hemorrhaged post-menopausally age 64

Hysterectomy 6/1/14

Mets to soft tissues only (5 lumps in breast, 3 on torso) & abdomenal cavity 

3 cycles (9 treatments) of cisplatin/etoposide 

Mets started shrinking before starting chemo after 1 month on Rick Simpson cannabis oil protocol only (on medical cannabis card)

After 2 cycles of chemo all mets gone only spot at mother tumor in uterus which decreased 70%

Taking a break from chemo due to adverse side effects: vision problems, vertigo, vomiting,etc

Doing veggie & wheat grass drinks, lots of supplements, curcumin, chlorella, etc.

Baylor is now reviewing my case for recommendations.

 

I'm new here.  Anyone else with this one??!  What a great support forum.  Thanks for being here.

Cat

 

 

 

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

Sorry for meeting you under the cancer circumstances but glad you found us.  This is a great group to belong to and it's full of information.  I had never heard of the type of cancer that you have been diagnosed with.  I have a rare type called UPSC (Uterine papillary serous carcinoma) stage IIIA    It's also aggressive.  I do believe, however, UPSC is a little more common than when I first received the dx in June, 2013.    Hopefully, someone else will know about the type of cancer you have.   I wish you well.  Keep us posted and post anytime.  We are here for you. 

Jeanette

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Hi, Cat, and welcome to our forum . Like Jeanette, I have never heard of the type of uterine cancer you were diagnosed with. It sounds like it is very rare.  I also have UPSC stage IIIA and completed treatment last March.  I think you will find that the csn members of this uterine board as well as those members of the ovarian board and the all other gynecological cancer board are an awesome, positive and inspiring group of wonderful ladies. Please keep in touch and let us know how you are doing.

Kind Wishes,

Cathy

P.S : I love your name. My mother use to call me Cats.

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