CSN Login
Members Online: 6

You are here

Lots of new ladies - let's have a roll call

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

We have a lot of new ladies on the board.  I think it's time for a new roll call to introduce ourselves all in one place.

Please tell us what type of uterine cancer you have and when you were diagnosed; where you are in treatment and what that treatment is; where you're from and your age (if you like) and anything else you want to say.

I'm Eldri, 64 years old from Green Bay, WI.  I was diagnosed in September of 2015 with Stage II, Grade 3 UPSC.  I had a complete hysterectomy on 9-30-15 and my oncologist thought he got it all.  However, because it was UPSC, he recommended 6 chemo (Carboplatin and Taxotere).  I made it through three chemos, the last one a year ago, before I stopped because of the severe side effects.  My doctor did not recommend radiation.  I am currently on 1500 mg of Metformin for T2 diabetes but also to see if it stops the cancer from spreading.

I am currently NED (No Evidence of Disease) but have an appointment for my three month checkup the end of this month so.......

My neuropathy is getting better, my stomach issues about the same, but the fatigue is still there.

Love,

Eldri

 

 

 

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

I'm Kim, 48 years old from Tampa, Florida. My diagnosis was uterine carcinosarcoma (MMMT) Stage 1b, Grade 3.

Surgery: TAH & BSO, 14 lymph nodes excised, 10.5 cm tumor - Sept 2015
Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - completed May 2016; Radiation - external, 28 treatments, sandwiched between chemo #3 and 4 - completed Mar 2016
NED: June 2016

This was my second primary cancer diagnosis. The first was malignant melanoma in situ on my right upper arm. The only treatment was surgery (3.5 in x 1.8 in x 0.5 cm excision) and observation.

My next CT scan is this Thursday (12/8/16) and I'll be getting the results of my genetic testing this Wednesday (12/7/16).

jodil
Posts: 42
Joined: Nov 2017

I am Jodi,age 59, from milwaukee, wi. Diagnosed with MMMT on 10/2/17. Had complete hysterechtomy on 10/24 but the day before I had to have a colonoscopy as part of my surgery prep. Thats when it was discovered the cancer had spread to my colon. Stage 3 for both. Started chemo (carb and tax) on 12/6 @ Aurora Cancer in Grafton WI which is a wonderful place. My hair started falling out a week ago. Got it buzzed off 2 days ago. Next chemo this week Wed. After I have completed the 6 rounds, I will start a different chemo regime for the colon cancer. This discussion board is very helpful and supportive. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

I'm Cindi, 59 years old from Inverness, FL. My diagnosis was uterine pappilary serous carcinoma (UPSC) Stage 1A, Grade 3.

Surgeries: D&C with a polyp removed that had a mixed result of endometriod and serous cancer.  Davinci full hysterectomy, XX lymph nodes, 0.7 cm tumor that was completely serous with only 2 out of 12 penetration into the wall- July, 2015

Frontline: Chemo - Carbo/Taxol - Started out weekly and requested a change to every 3 weeks after the first 6 weekly treatments. Then, brachytherapy.

I consider myself NED since surgery. However, my surgeon starts the count after the last treatment. I finished chemo 12/21/15 and radiation 1/28/16.

My next scan will be sometime this month but is yet to be scheduled.

I'm feeling better every day. Neuropathy has improved a lot but is still hanging around in my feet and fingertips. My energy level is not back to pre-cancer levels but is pretty darn good most of the time. I wake up happy every day and so grateful for my life.

Love and Hugs to all,

Cindi

 

 

 

 

CheeseQueen57's picture
CheeseQueen57
Posts: 820
Joined: Feb 2016

I'm Susan. I was diagnosed with Stage IIIc, Grade 3 uterine carcinoma after a total ab hysterectomy on St Patrick's Day 2016. I live just outside Philadelphia. 

I completed 14 weeks of a planned 18 weeks of taxol/carbo and I had to stop because I suffered a mild stroke. I completed 28 days of external radiation and 3 session of internal radiation. I completed my frontline therapy in October 2016. My next CT scan is in February. 

I continue to have swelling of my optic nerves in both eyes since August. We're not really sure the cause but we don't think it's cancer related. I still have some neuropathy in my toes and quite a bit of fatigue. I'm anxious for my hair to grow back. Trying to get my life back. 

tattoolydia1953
Posts: 7
Joined: Dec 2016

I'm Lydia. I was diagnosed with stage 3b endometrial (uterine)  cancer. I'm recieving sandwiched chemo/radiation therapy. I am finishing my 3rd round of chemo and radiation is next. Even though chemo had it's moments I'm dreading the radiation. I'm to have external and internal. I too, have neuropathy in my toes and fingers. I was diagnosed with diabetes the day they found my cancer. Fortunately for me it wasn't yet to bad out of control and am controlling it with 5mg of glyburide daily. I also miss my hair, but get to wear alot of different head gear now. I wish you the best and good luck with the ct scan.Smile

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

Welcome Lydia. This is a great place to get support, comfort, understanding and questions answered. I'm glad you found us and sorry that you had to. I hope you find the radiation tolerable and much easier than you expect it to be. Please come back and let us know how you are doing.

Love and Hugs,

Cindi

tattoolydia1953
Posts: 7
Joined: Dec 2016

Feels good to hear back from you girls. Besides my husband and a couple of friends, my support group is very small. I am encouraged by what you tell me. I will check back in and update my progress, as well as see how everyone else is doing. Luv you all, Lydia

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Welcome to the club no one wants to belong to.  You have found a great place.  The ladies here have great information to give.  This is,the place,to,come.for comfort, support, information and a place top rant when you need to.  I,was also scared about radiation, but in the long run it has been the,easiest part of this rollercoaster ride.  My biggest problem at the time was holding still.  My appointments were always late afternoon and I taught school most of the day.  I was so afraid that I would fall asleep and roll off the table.  The internal radiation was a piece of cake for me.

Hugs and prayers, Lou Ann

tattoolydia1953
Posts: 7
Joined: Dec 2016

Was so glad to read that internal radiation was a piece of cake for you. I have been dreading this the most. I am encouraged that it doesn't have to bad as I might think. I have always expected the worse, so when it isn't as bad, then I feel blessed. And I do like to come hear and read what others have to offer. Luv you all,Lydia

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

There is a thread titled 'Let's talk about radiation'....  I think it will answer loads of questions for you. I hope you check it out!

Like Lou Ann, internal radiation was easy on me too...

lyn347
Posts: 4
Joined: Dec 2016

I'm Linda. 68 years old. Diagnosed with uterine carcinosarcoma. My gyn has referred me to a gyn/oncol. I see him Tuesday.  Just bowled over by all this. survived breast ca 37 years ago .

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

Welcome, Linda!!  I'm sorry to hear about this second cancer.  Please keep us updated on your treatment.  If you have any questions, this group of ladies is pretty much up on the latest treatment - honestly, some of them could get a PhD in cancer.

Love,

Eldri

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Welcome to our little club and so sorry that you had to join.This is a great place to be.   The ladies here can offer you information, comfort, and supporT. You are in a hard place right now.  The not knowing and waiting is the hardest part of this rollercouster ride.  Once you know details and have a plan you,will be able to wrap your head around this and move forward.  You will surprise yourself with how.strong you Will be.

Hugs and prayers, Lou Ann

MAbound
Posts: 889
Joined: Jun 2016

These periodic roll calls are real helpful, but then you always have to come back to find this thread when you can't remember these particulars as time goes on. I'd like to propose that people try to find the time to put this same information in their "My CSN Space" so we can click on screen names for the info we want to recall in whatever thread were currently reading.

But in the spirit of not being a party pooper, here's my stats:

I'm Pat, 59 years old, living outside of Buffalo, NY. 

My PCP sent me for a biopsy in late March because I still hadn't gone into menopause and the results showed a grade 3 cancer. They weren't sure if it was cervical or endometrial or possibly even both. The oncologist staged me as a I or a II in his office, but that was his preliminary guess or him just breaking the news to me slowly. Every time I saw him, it seemed like things were always worse than originally thought.

I had a radical abdominal hysterectomy, BOS, sentinel pelvic & para-aortic lymph node dissections, omenectomy, and pelvic wash on my eldest's birthday in April (note the irony of that!). It took over a month and 3 different labs to pin down the results, but I ended up with Stage 3a (since changed to 3c), grade 3 endometrial adenocarcinoma. They decided that instead of 2 cancers that mine originated in the neck of the uterus and grew down to the cervix and also up into the fundus. Instead of 30% myometrial invasion as originally thought, it was changed to 70% because the uterus is thinner at the neck than in the fundus. It's an important distinction because it impacts treatment, particularly the need for radiation in addition to chemo. I had one positive pelvic lymph node on each side that I was originally told is read as being negative (why I was 3a for a while) but then minds changed and I was upped to stage 3c. My para-aortic lymph nodes and omentum were negative. My pelvic wash was inconclusive. One ovary and the opposite fallopian tube were involved although the fallopian tube may have been contaminated during dissection.

I started 6 cycles of Taxol/Carboplatin on May 18 and finished on August 31st. The Taxol got switched to Taxotere starting with the 2nd cycle because I developed intensely (unbearable!) peripheral neuropathy from the Taxol. I also started getting B12 shots monthly to help with the neuropathy and used hpyothermia mittens and slippers during and between infusions. I had more issues with heartburn than nausea and so used Pepcid AC to deal with that. Constipation was an issue for which I took Miralax 2x/day and Senekot-S as needed. 

I had a negative PET scan Sept. 19.

I had a 2nd surgery to repeat the pelvic wash at the end of September. Positive results meant that I wouldn't need to go through radiation therapy because that would no longer be able to cure me and negative results meant that my oncologist was going to advocate for me having radiation therapy. The results were negative.

I tried very hard to find a reason to refuse radiation therapy, but I really had all of the factors that made it something I had to reconcile myself to: Stage & grade, location of origin, lymphvascular involvement, greater than 50% myometrial invasion. I've had 25 rounds of pelvic radiation (3D-CRT) with 5 rounds of a "boost" to the vaginal cuff area that I complete tomorrow (ding! ding! ding!) It's been easier than chemo physically, but harder mentally to get through this. It just felt like I might already be cured by the chemo and have just been destroying healthy cells. It was really hard to submit to this, but I'm not sure I could rest easy without having done all that I could to fight this monster. If I learned anything through all of this, its that what I do in my normal life matters a lot to my family, so I did it for them. I'm kind of still hoping it wasn't a mistake.

I have a follow-up with my gyn onc in a few weeks when I will find out if I'm still going on hormone therapy for the rest of my life, then it's check-ups every three months. I'm really hoping the side effects from the radiation don't last too long so that I can start taking some trips to see my dad before he dies (92 and possibly has bladder cancer) and my kids on the east coast. There's so much on my plate that's been put on hold during treatment that I'm going to focus on that to keep thoughts of recurrance from worrying me. We'll see how that goes. 

I recently got some genetic testing results back. Insurance would only cover testing for the BRCA 1 & 2 genetic mutations (I'm negative) and for Lynch Syndrome (I'm positive!). Lynch Syndrome puts you at higher risk for a number of cancers, but especially colo-rectal and endometrial. It probably means a slew of annual screen tests are in my future and that my kids and grandkids need to be tested, too. If any of you are interested in learning more about how a Lynch Syndrome finding is managed here's a good link: 

http://genefacts.org/index.php?option=com_content&view=article&id=492:management&catid=113:lynch-syndrome&Itemid=665 

Pat

 

 

 

Nellasing
Posts: 529
Joined: Oct 2016

We'll be thinking of you tomorrow!!!!  YAY!!!!!!  I'm sorry that it's been so difficult and so glad you will be done before the holiday.

Sorry to hear about your dad!!!  I hope you get to go see him soon.   (((HUGS)))

Rockinrmb's picture
Rockinrmb
Posts: 2
Joined: Oct 2017

Hi Pat, I just joined CSN today in searh of info. on UPSC. But in reading your comment, I just want to make sure you've looked into Keytuda/Pembolizumab per http://www.onclive.com/web-exclusives/fda-review-continues-for-pembrolizumab-in-msih-cancer. ("Defects in MMR commonly lead to microsatellite instability, which can be found in most cancers, including a majority of patients with hereditary nonpolyposis CRC (Lynch syndrome). Without this repair mechanism, the mutational burden is generally higher, suggesting a higher likelihood of developing cancer. In total, more than 80% of patients in the MMR-deficient arm were positive for Lynch syndrome." ...In the 48 patients analyzed from the study for the ASCO presentation, those with MMR-deficient CRC experienced a DCR of 92% compared with 16% in MMR-proficient tumors." Wishing you all the best

janaes
Posts: 781
Joined: May 2016

Hi Im Janae.  I was diagnosed with Carsisarcoma Uterine cancer Stage 2 grade 3 back in May 2016.  I have finished chemotherapy and bracytherapy on Nov. 3rd. I currently still have nuropathy in my fingers and toes and still have joint pain in my legs.  I live with it and  can now work a part time job.  I dont think i have ever mentioned this but i am from UT and am 44 years old.  This is my second cancer. I had Hodgkins Lymphoma about 24 years ago.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Hi, I am Lou Ann, i will be 70 in a few weeks and am from Whitehall, Mt.

i was diagnosed in Aug, 2012 with Serous  Pappillary Endomedrial Andocarcinoma.

Treatment plan:  Radical hysterictomy, sandwich treatment (3 Taxol/carbo, 28 external radiation, 2 brachytheryep, 3 more Taxol/ carbo). NED for 7 months, PET scan showed mets to neck, liver and several,others in abdoman.  5 more rounds of Taxol/ carbo.  Stopped because blood counts were not recovering and CA125 was and 6 plus CT scan showed NED.  My oncologist gave me a chemo vacation,  after 4 months CT scan showed mets had returned to various places including between my intestines.  Back to Taxol/Carbo.  Had a reaction to the Carbo on rounds 3&4. Tried Taxol by itself for two more rounds.  That didn't work.  Tried Doxil. Bad side effects and it let large tumor Intwine between my intestine.. Open Bowel resection. 2 rounds of Topoteca, that did nothing.  Went back to Taxol/Carbo with a desensitizing program, that worked for 7 rounds when I had another reaction to the Carbo.  Tried Avastin, my genomic match, it was working, but caused a heart attack.  After 8 weeks rest my oncologist helps me apply for compassionate use of a Immunotherapy drug, Keytruda.  I had round 8 of the Keytruda toda.  It has very few side effects and seems to be working.  I am very hopeful.

It is getting to be a long story, but it does mean that I am still here and this roller coaster has not thrown me off yet.  There is always hope.

namedropper
Posts: 102
Joined: Dec 2014

Hi, I am Sue from Willowick, Ohio just outside of Cleveland. I am 75 years young. I go to the Cleveland Clinic. I was diagnosed with MMMT uterine cancer  stage 2 grade 3  June of 2014 and had 5 chemo  treatments of taxol/carbo after a full hysterectomy. I also had 3 brachytherapy treatments and have been NED since Oct. 2014. I  just today I found out that a lymph node  above my ear that I had biopsyed last week  came back showing breast cancer from 2012.  I also have nodules in my lungs that have not been biopsyed yet.  They do think it might be from the breast cancer also. I will know soon.

 

Nellasing
Posts: 529
Joined: Oct 2016

So sorry to hear that biopsy result Cry  This stuff is like fly paper- just keeps sticking around!  Keep us posted.  We're here for you (((HUGS)))

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

It is so hard to understand that something can return after that long.  It seems like once it grabs you it just doesn't let go and you can't get away from it. Sending hugs and prayer for you, Lou Ann

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

I'm sorry, Sue!  This is the pits - you make it through uterine cancer only to have the breast cancer come back.  This stuff is sneaky and unrelenting - I hate it!!

Love,

Eldri

cindy0519
Posts: 173
Joined: Nov 2015

So sorry you are having to go through this Sue.  I too have both Breast (IDC Stage II) and Uterine (USPC).  Hope you get answers and a plan soon!

Nellasing
Posts: 529
Joined: Oct 2016
April 28, 2016 da Vinci robotic assisted surgery- Radical Hysterectomy & Bilateral Salpingo-Oophorectomy
Endometrial Adenocarcinoma Stage 3A grade 3
June 3- Sept. 21, 2016 Chemo Carboplatin/Taxol (6 rounds) declined rad
1st followup after front line Oct 19- NED
Still some neuropathy in my feet- some days worse than others.  Struggling with ongoing fatigue and swelling.  Had a recent TV ultra sound to rule out anything in abdomen- whew- nothing- still swelling, pain, bloating etc. they are thinking it's related to lymph? Working on it with IV therapy, supplements, massage and hyperbaric oxygen chamber.
Have 2nd followup appt. with gyn/onc Dec. 21.  No CA-125 to follow and she doesn't do scans unless there is a problem.  Hope to continue NED
cindy0519
Posts: 173
Joined: Nov 2015

Diagnosed with invasive ductal carcinoma (Stage II) two days before my 50th birthday last year (May 2015).  Had a unilateral mastectomy of my left breast and imediate reconstruction (tissue expander).  Expander failed (long horrible story) and was removed in Aug. 2015.  Thought I was going to get a break from cancer when I was diagnosed with USPC at the end of Sept. 2015.  DaVinci robotic assisted surgery- Radical Hysterectomy & Bilateral Salpingo-Oophorectomy, removal of 27 lymph node, and biopsy of omentum on Oct 8, 2015.  Pathology revealed Grade 3 Stage IIIC1 USPC.  Frontline treatment included 6 cycles of Carboplatin and Taxol.  28 external HIT radation treatments.  CT in May and a repeat in Aug both show NED.

Just had a routine colonoscopy and 2 polps were found (transverse colon - sessile serrate polyp and sigmoid colon - tubular adenoma with high grade grandular dysplasia).  Both are precancerous so I will be getting more frequent (every 3 years) colonoscopies to hopefully avoid adding colon cancer as a third cancer.  

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Hi! I'm Kathy and I live just outside Peoria, Illinois. A d anc in August of 2015 showed encometrial clear cell cancer. After a DeVinci hysterectomy I was stage 111C grade 3/4. Cancer in two lymph nodes and a positive pelvic wash. I then had 5 weeks of external radiation and 3 internal radiation. Next 6 rounds of carbo taxol chemo. I finished front line end of June and after my ct scan in August I am NED:) I now see the gnocologist oncologist every 3 months and may have another ct in 6 months. I am feeling pretty good but I do have lasting stomach issues from radiation though the effects seem a little better or I'm just getting used to it. I also still have neuropathy in my feet but it's not a huge problem. I have bad knee that will be replaced one of these days, but I may wait for Medicare which will be another year from-now. Oh and my husband was diagnosed with prostate cancer recently. Hormone treatments and radiation to begin in January.

Suepatsfan
Posts: 6
Joined: Dec 2016

Hi Everyone,

I am new to the group. I had a full hysterectomy on Oct 31st. I had cancer in my uterus and one ovary. I will start chemo this coming Monday the 12th. Since finding out about my diagnosis, I have been very positive and trust in God.  Looking for a support group to answer questions and uplift others as we go though this.

MAbound
Posts: 889
Joined: Jun 2016

Hi Suepatsfan!

From the Boston, MA area?  Sorry you needed to find us, but you are in a good place for what you are looking for. Did you get your pathology results yet? How have you been holding up since your surgery?

Suepatsfan
Posts: 6
Joined: Dec 2016

Hi MAbound,

I am originally from Mass, but have lived in southern Ca for the past 20 years. All my family stilL live in Mass. Regarding my pathology results, my doctor went over the results with my sister and me. (my sister flew out to help me after surgery). I strongly believe in God and that though the power of prayer and intervention, I will overcome this. Go Pats and Tom Terrific...on to another Super Bowl!

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I'm Chris from Sacramento, California, 63 years old (for a few more days.)  I was diagnosed with uterine carcinosarcoma in June of 2015.  Big shock because I have none of the risk factors for uterine cancer except for never having had children and have always been very healthy.

Laparoscopic Hysterectomy 7/15   Staging post surgery: Stage IIIC2, Grade 3.

Chemo with carboplatin/taxol 8/28/15 - 12/11/15   every 3 weeks for 6 rounds  

Second opinion 1/16 pathology couldn't confirm carcinosarcoma, and said serous carcinoma.  Will go for the tiebreaker should I have a recurrence.

Brachytherapy 3 sessions from 2/10/16-2/24/16

First Post Treatment PET Scan  5/14/16  NED

Second Post Treatment PET Scan 10/11/16  2 very small suspicious areas.  Unable to be biopsied or confirmed as malignant.

Currently working with a naturopathic oncologist with the full support of my gyn/onc.  Have switched to a 99% organic diet, take a number of supplements as well as mistletoe extract injections and low-dose naltrexone. Follow up scan to be done in January 2017.

No lingering side effects from chemo with the exception of my WBC which has not yet returned to pre-chemo levels.  But... I haven't even had a cold since the end of February, and I feel great!  Energy levels back to pre-diagnosis levels.

 

 

ToucanTango
Posts: 1
Joined: Oct 2016

I have been reading posts since Jan 2016 when I found this site but have never posted.  I thought I would provide my situation in case it could benefit others.  

I was diagnoised in Dec 2014 post D&C.

After surgical staging in Jan 2015, diagnosis was Figo stage IIIC1 - endometrioid adenocarcinoma, Figo grade 1, type 1, 1 cm tumor invading 1mm of 15mm in average thickness endomyometrium. 1 (of 6) positive lymph node. Lymph-vascular invasion present. TNM stage: pT1aN1.  

Treatment was surgery followed by chemo (pac/carbo), 25 external RT fractions, chemo (pac/carbo)  --  sandwich treatment -- Feb -> July 2015.

My journey is documented in my profile.

So I have the "garden variety" but I don't see too many other ladies with with this type and stage.  Hopefully, they are all doing well.  If there are others out there, I am interested in how you are doing regarding recurrance and whether you have experienced any long term side effects such as leukemia, sarcomas, pelvic insufficiency fractures, etc

P

MAbound
Posts: 889
Joined: Jun 2016

Hi P...I love your screen name! It has a very cheerful sound to it! ;-) I have pretty much the same "garden variety" of this cancer that you have and am certainly worrying about the same possible future issues that you are. I think that's why so many of us really resist the idea of having radiation therapy more than we did the chemo. Oh well, one thing at a time, I guess. Glad you posted!

Jacsma
Posts: 9
Joined: Dec 2016

I'm one of the very newest, but wanted to participate in the roll call.  I'm Pam from the Raleigh/Durham, NC area.   

Had a biopsy on 11/30 and was told the cells were cancer - well differentiated - that's ALL I know at this point.  Appt. with gyn/onc on 12/20.

MAbound
Posts: 889
Joined: Jun 2016

Getting told your biopsy indicates you have cancer is bad, but finding out you have well-differentiated cells is an encouraging thing to know. It means your cancer cells are more like normal cells than tumor cells at this point and what you have is usually graded as a 1 out of 3. It hopefully means that your cancer has been caught before it could progress to a higher grade or spread. Don't quote me on that, but that's my understanding. Nothing is certain until you actually have surgery and get your final pathology report, but there's good reason to stay calm while you wait for things to progress. Hang in there!

Gmascookie
Posts: 5
Joined: Dec 2016

while you are correct that well differentiated is a good thing, it is the fact that they are more not normal than normal that makes it good news. Treatments work better on cells that are easier to identify as cancer. Hope that makes sense.

Gmascookie
Posts: 5
Joined: Dec 2016

I'm "cookie". my mother has stage IV Uterine papillary serous adenocarcinoma. We're in Madison, WI. Hope it's ok I chat too. I lost my father and uncle last year to different cancers. i will try to update profile sometime when my dtr doesn't need attention. As someone mentioned, it'd be rather tedious to try to locate this stuff in the future. Just confirmed relapse late this summer. i think she was 59 at first diagnosis. Not sure chemo is the answer. We're focused on natural therapies for now, despite obvious progressioN. Looking for hope and stories. I am familiar with some natural therapies that may help with comfort if nothing else. I saw that someone here is doing mistletoE, thinking of trying that too. Thank you for being here! I hope I can brighten someone's day Sometime.

Nellasing
Posts: 529
Joined: Oct 2016

Thank you so much for posting and sharing your stories.  You absolutely have found a wonderful place to link arms and join in the journey together.  It is so nice to find out there is a place where people speak this new language and KNOW what you are talking about- where you don't have to be afraid to ask the hard questions or vent the "whatever" because everyone is either going through it or has been there and some more than once.  Please keep us posted and know you'll be in our thoughts and prayers.  (((HUGS)))  PS  Cookie- we have several daughters here- it's fabulous that you are finding support as you help your mama!  You need it too <3 <3

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

Hi all!  I one of the old-timers here.  Diagnosed July 2009, had to have open heart surgery to correct a birth defect.  Had extream radical full open hysterectomy in Dec. 2009.  I have UPSC also, 1a, grade 3.  Did six rounds of Taxol/Carbo sandwitched in with five internal radiations.  Still here, good days, bad days, and Hamburger Helper days!  Trying to work my way back to normal and to y'all.  May be having my fourth open-heart surgery this Spring.  Playing the waiting game. And I am from Vidor, Texas in Southeast Texas, near the Gulf coast close to Louisiana.  Y'all take care...I am in the back ground!  Debrajo

Scotgirl's picture
Scotgirl
Posts: 31
Joined: Oct 2016

Happy Holidays to all,

Just want to say I am grateful for all who post. This is where you will find the honest answers to your questions that the docs are not always forthcoming with. I was diagnosed this past August 2016, two months after my husband and I retired, with Grade 3, Stage 1a, endometrial adenocarcinoma, Clear Cell. Radical hysterectomy with sentinel lymph node mapping, only removing 3 lymph nodes, all negative, negative wash, all contained within uterus no invasion of the myometrium. The caveat to the diagnosis is the fact that is "clear cell". Since it is rare and there are almost no reliable statistics, the cancer industry looks at the cancers that mirror the histology of the clear cell and use the protocol for those cancers such as ovarian. My treatment: 6 rounds Carbo/taxol, every 3 weeks, 3 vaginal brachy therapy treatments. Unfortunately, I have had so many side affects from the chemo (currently just completed round #3 with a reduction of 20% on the dosing of the Taxol) that I am seriously considering stopping at #3 since the reduction on the Taxol had no affect on the affects that followed. Most recently what was to be my final brachy therapy had to be postponed until after this Monday when I see my surgeon. My radiation doc found "vaginal mucositis" and would not do the radiation. So the saga continues but I will get through it and look forward to a more positive 2017. Already planning another trip back to Scotland, my ancestoral heart and soul. Thanks for listening and all the valuable information from all who post, it has helped me tremendously make some very important decisions.  Di (aka Bee, my grandma name, long story, lol)

KTMay
Posts: 25
Joined: Nov 2016

I am 66 living in Florida; until this year I commuted monthly to Washington DC for part time work. Diagnosed in May with high grade serous carcinoma of the uterus, Stage IIIc. (Complete surprise as I consider myself a healthy and active person!) I did 4 rounds of Carboplating/Taxol and followup CT and PET scans showed growth to abdomen soft tissue and lymph nodes in pelvis and stomach areas which got me classified as "recurrent metastatic disease." During past 6 weeks I have traveled to get opinions on what next and to understand a "larger picture" of what decisions could be coming at me. The consensus was to get to back to chemo "pronto" and next week I will start doxil and avastin for 6 cycles. I am not clear on why Doxil vs. others but appreciate the posts from those who had issues with this drug; I am forewarned! The biggest disappointment in spending time/travel on the consults has been the difficulty in getting information and dr. support for clinical trials using immunotherapy. Uncovering clinical trials typically involves another part of the cancer institute and the oncologists I have met with are leary of recommending this as a favored or good option. I feel relatively healthy and open to all options, but if I want to seriously pursue clinicals at some point it will take more research, leg work, and outreach on my part. So onto Doxil next week, but my gut tells me this will be at best a temporary slowing and immunotherapy could hold more promise.  I relish learning about the specifics on what chemos and other therapies are working for women with UPSC on this site.  KTM   

Northwoodsgirl
Posts: 559
Joined: Oct 2009

Hi! I am wondering if you have checked the NCCN website to see what the concensus   treatment protocols are for your specific type, stage and grade of cancer. Also if you want to find clinical trials you may want to check  Clinical Trials . Gov website.   You may already be aware of these sites but if not it might help as you advocate for yourself. 

It is so hard not knowing how to make an informed decision. Your medical insurance company ought to have a "nurse navigator" who can help you navigate the clinical trials questions, 

Northwoodsgirl
Posts: 559
Joined: Oct 2009

Hello ladies! I was diagnosed May 2009 at the age of 53 yrs (4 years after my 72yrs old Mom died from the same type, stage and grade of uterine cancer). I had endometrial adenocarcinoma 2B with cervical involvement.   My risk factors include never having a pregnancy,  tall in height, and a bit overweight starting about age 45 yrs ( according to insurance tables).

I live in the Twin Cities area in Minnesota.  Treated and cared for by the University of Minnesota Women's Cancer Center. Surgery included total hysterectomy, tubes & ovaries,  removal of omentum, 26 lymph nodes, and para aortic node June 6, 2009. 

Chemo protocol was carboplatin/taxol..."sandwich" protocol meaning 3 rounds spaced 21 days apart, then

28 external radiation treatments and 3 internal brachy radiation treatments Followed by another 3 rounds of the carboplatin/taxol.

I developed neuropathy in my hands and fingers which of course I still have (as many of us do). In addition I have 

lymphadema in my pelvis which also causes issues with swelling in my ankles.  I am physically active but do have issues with fatigue and chemo brain sometimes. 

No complaints because I survived and am extremely thankful for every second I am alive and otherwise in good health. 

I check into this discussion group every so often but don't comment very much. Every person on

this discussion board is a hero and angel to me!!!!  God bless you and your families and friends as we all continue to fight cancer. 

 

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

Hi there,

7 years ago I had a rare and aggressive form of small-cell undifferentiated uterine cancer.  I had simultaneous chemo and radiation treatments until the tumor shrunk, then surgery and follow-up chemo.  I also had a port added and later removed, lots of transfusions throughout treatment because my numbers tanked, a hospital stay of a few days after the follow-up chemo because numbers tanked again.  Then I healed & healed, and got back in the saddle again working full-time.  Awfully lucky to be here!!!!!

bluesmama
Posts: 124
Joined: Aug 2014

Hi there.

Current age: 42

Ethnicity: Asian American

Work Status: On Short Term Disability

July 2014: Biopsy indicates endometrioid adenocarcinoma Grade 1

August 2014: Davinci Total Hysto with Right Salpingo Oophorectomy, Type, grade confirmed. Stage 1A. No further treatment. Observations every 6 months.

Aug. 2016: Saw my PCP for growing belly and bowel issues going on for a month.

Sept. 2016: Transvaginal ultrasound indicates large mass on remaining left ovary.

Oct. 2016: Laparotomy which removed the following: large tumor (12cm x 9cm x 6 cm) and ovary, 6 inches of sigmoid colon (tumor was stuck to it). A few lymph nodes. Omentum. Appendix. Ascites. Pelvic wash. Biopsies in upper quads. Findings: Ovary had endometriosis and cysts along with same tumor type from first cancer. Tumor was stuck to my left pelvic wall and sigmoid colon. All biopsies and washes were negative. Surgery damaged the nerves in my left pelvic area. Still have numbness in that area and have limitied motion.

Nov. 2016: Various tumor boards couldn't agree with the origins of this cancer - did it arise from endometriosis and is therefore a second cancer or is it a recurrence from original cancer? Recommended two phases of treatment with a few weeks breaks between the two: (1) 2 rounds of cisplatin along with 28 days of daily external radiation and (2) 4 rounds of Carboplatin and Taxol every 3 weeks. Cisplatin knocked me out for 2 weeks. I was miserable and a weeping mess. I'm still a weeping mess. Keeping up with hydration requirements (2-3 quarts a day) was a lot harder than I thought. Ended up getting hydrated via IV once. Also weakened my left leg further and both legs tingle to the point I have trouble falling asleep at night. Not sure if that's the radiation or the chemo. Also, bowel movements are out of control. The nausea has not ended as I head into the second round of chemo and I'm dependent on my Ativan. Also losing my pubic hair. 

Dec. 2016: About to start second dose of cisplatin this week with two more weeks of radiation. Really unhappy about it. I now know why people refuse chemo. This is truly a brutal existance and I have 4 more chemo rounds in the next phase. I don't know how you ladies do it. I try to think about the love of my life - my 3 year old niece who I adore and who adores me - when I hit my lows and sometimes it's not enough.

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

(((bluesmama))) I agree, chemo is brutal and sometimes the "cure" is worse than the illness.  I hope this round of treatment is better.  Please let us know how it goes - we care!

Love,

Eldri

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Bluesmama, I'm so, SO sorry to hear about your chemo nightmare. Forgive the obvious question, but what are your doctors giving you to help cope with all this? I have my trusty bottle of Xanax at all times, and try to remember to take one when I feel an overwhelmed episode coming on. Hopefully you have similar chemical aids at your disposal. I imagine the removal of your remaining ovary put you into immediate menopause? I had a radical hysterectomy two weeks ago and, while I'm much older than you (59), had not yet gone through menopause and am sweating out the loss of what little estrogen I was getting from my system. How wonderful that you have your niece, and she has you. Please focus on nurturing yourself and your recovery in the same way that you would nurture her if she were ill.  Be well, and i will hold you in my thoughts and prayers. B

pinky104
Posts: 574
Joined: Feb 2013

I was diagnosed at 61 with UPSC stage IVB (adenocarcinoma) at the end of March, 2010.  I had a total abdominal hysterectomy, bilateral salpingo-oopherectomy, omentectomy, iliectomy, cholecystectomy (for gallstones) and an appendectomy all in one big surgery in June, 2010.  I was in the hospital 6 days.  I was supposed to have a robotic hysterectomy and go back to work in 2 weeks, but my GYN/Onc. announced the day of surgery that after looking at my CT scan from another hospital, my cancer was more extensive than he'd thought, so he couldn't do it robotically.  I had two units of blood a couple of days after surgery because I had lost so much during the surgery.  I had 6 rounds of carboplatin and taxol, ending in Sept., 2010, and I didn't get asked to have any radiation, probably because the cancer had been so widespread. I refused the Neulasta shot since it had a risk of causing heart attacks and my little brother had just died from having had one the week before.  I eventually had another transfusion, which didn't make me feel one bit better.  I later found out that I had hemochromatosis (my body couldn't get rid of excess iron because of a genetic abnormality and I was storing way too much iron).  I had two phlebotomies the following Jan. and Feb. (just after being diagnosed with hemochromatosis) to get rid of the excess iron, then I was supposed to have another, but I was sick.  It turned out that I was already anemic, probably from how the chemotherapy had affected me (my body didn't react normally to the phlebotomies).  I couldn't have another transfusion, so I just had to take it easy until my blood count built up again. I've been NED ever since surgery and chemo.  I did have one scare.  I had some abdominal pain and my family doctor's office ordered a CT scan.  That showed a mass in my paracolic gutter (located near my spine), so I was sent for a PET scan, which showed the same mass.  Of course, I thought my cancer was back, but after two more CT scans 3 months apart and a final one 6 months later, my GYN/Onc. told me he didn't know what the mass was, but it couldn't be cancer because it hadn't grown.  One of the nurse practitioners in his office said it might be fluid from having had my lymph nodes removed.

I am now 68, 6 years out from having completed chemo.  My CA 125 before surgery was 94.  It's been running in the 7's most years, then a couple of 6's.  This past June it had gone up to the 9's.  I was reassured that this meant nothing, but it worries me a little, since it's the highest it's been since chemo ended.  I haven't been scheduled for my next appointment yet, but I expect to get a call asking me to come in to my oncologist's office in Jan., or maybe it will be Feb. since my cancer center has gotten really busy.  I see my GYN/Onc. once a year and 6 months later, I see my oncologist/hematologist.  I had my surgery at one hospital and had my chemo at the hospital where I'd worked, closer to home.  I live in a small Revolutionary War town in upstate NY, about an hour from Vermont, and 45 minutes north of Albany.  My GYN/Onc., who's been wonderful to me, is in Albany.  His partner, who was supposed to be the expert, is retiring this year.  They do a huge business, so I hope things don't get too crazy there. I normally have 45 minutes to an hour and a half waiting times as it is.  People come from long distances to see them as there aren't any other GYN/Oncs in the area.  I'm pleased to have been in remission for so long, and I hope I can stay that way.  My mother got breast cancer twice, ten years apart, so I'm always expecting something like that to happen with mine.  Her mother also had breast cancer, which was bilateral, in both breasts at the same time.  It always pays to stay wary of any changes in my body. My father had prostate cancer and a half sister had lymphoma.  Cancer definitely runs in the family. I was tested for Lynch Syndrome but came up negative.  I wanted to be tested for the breast cancer genes, but my insurance wouldn't cover that test.   

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

Hi everyone, I've been a member of this board since 2011, although I don't come here as often as I used to as cancer gets further and further away from my mind. I'm Diane, live in Houston, and I'm 63 years young! I'm also a school teacher and have been teaching for 30 years.

UPSC was discovered after I began having atypical endometrial cells (AGUS) pap smears. 
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 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.

So here I am in 2016, 9 years post vaginal cancer, and 5 years post UPSC. My heart goes out to all the ladies here going through treatment and especially to those who are dealing with recurrences. This is certainly the club nobody wants to join, but I'm so thankful for all the ladies here. This unique sisterhood of ladies from across the world, who would never otherwise meet, keep each other uplifted and supported....and that's an awesome thing! 

Sending big hugs, love and prayers to you all you incredible ladies! 

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

I am 41 and located in northern VA. In May 2014 at the age of 39 I was diagnosed with grade 1 Endometrial Adenocarcinoma. After total hysterectomy was told I had Grade 2, Stage 1a Endometrial Adenocarcinoma. I had 6 rounds of Taxol/Carbo and 3 Brachytherapy. Just had annual CT scan in November and report says NED!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1564
Joined: Jun 2015

Sandra, Congrats on dancing with NED. I hope that continues forever.

Love and Hugs,

Cindi

Pages

Subscribe to Comments for "Lots of new ladies - let&#039;s have a roll call"