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Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatment?

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

We have so many wonderful new people posting and I have been so busy with treatments and trying to keep my head above water at work. I am afraid I haven't really welcomed everyone (I APOLOGIZE; you can't possibly KNOW how glad I am that you all have found us!), and I am having trouble keeping everyone straight in my poor chemo-brained head.

So could you each just post under this thread with the name you'd like us to call you, what your cancer diagnosis is (if you have it yet), and where you are in your treatment. And if you want to say where you live, that would be cool too. I'll start it off:

Linda Procopio:
Stage III-c UPSC, radical hysterectomy 10/10/09; just finished 6 rounds of carboplatin/paciltaxol (sp?); with 8 weeks of radiation coming up after I recover from the chemo. I live in central Pennsylvania.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Deanna,

I really don't know what to ask for since I have not gotten accupuncture. But in dealing with massage therapists, I have learned that there is special oncology training in that field. So, I think it would make sense to ask if they have had oncology training and they should know what to so.

For what it's worth - Mary Ann

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

Hello to all! My name is Cecile (tacked on Louise to differentiate from the other Cecile, whoever you are...love your name!!) I was diagnosed with endometrial & papillary serous cancer of the uterus 2 years ago. I've had a total hysterectomy and 6 treatments of carbo/taxol. Normal paps, CT scans and pelvic exams ever since, although the last couple months am crampy, bloated, nauseous...hoping it's just a bug, but Doc is ordering another CT scan 2 months early. More about that later.
I am so glad to have found you all. Thank you for sharing your journeys: your joy & sorrow, your strength and yes, even your weakness helps me cope in more ways than I can describe. Hugs all around.

california_artist
Posts: 850
Joined: Jan 2009

Your post is the best Christmas present I could have gotten. There has been a lot of recurrence stories lately. I was beginning to think that perhaps chemo/radiation would not work for the people who have taken it, so your being proof of a two year survival has truly lightened my heart. Thank you so much for chiming in, even though you need no answers and your joining was only to lessen our load.

Thank you. Thank you. Thank you.

Claudia

I noticed you were very young to have UPSC. Do you have children?

Hugs right back at you, Cecile.

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

Thank you for your very kind response. Yes, my oncologist was very surprised to find UPSC, as I don't fit any of the common criteria: I wasn't (notice the past-tense, haha) overweight, no diabetes, I was 46 at diagnosis. Matter of fact, he said he would never have thought I had cancer had it not been for my gynecologist attempting a D&C following the discovery of polyps following a hysteroscopy. (I had bleeding between periods, thought it was just a nuisance and mentioned it during my well-woman exam, almost as an afterthought) I have no children maybe that was a contributing factor?

Hugs,
Cecile

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Good to hear from you. Glad you have had two years of normal tests. Hope your CAT scan turns out to be normal too. In peace and caring.

bots's picture
bots
Posts: 53
Joined: Sep 2009

I have been lurking since August when I started by chemotherapy. I was diagnosed July 2, 2009 with endometrial papillary serous cancer. After sugery and staging, I was found to be Stage 1b grade 3. (I am 71 years old by the way.) My oncologist said I would have three or four "preventative" chemo sessions. After the third session I was having a lot of neuropathy in my hands and feet, so he and I together decided not to go on with the fourth. I had my last session on September 29 and will see my oncologist on January 20. He has not done a CAT scan and will have me have a CA-125 before I come in. He seems to be very conservative in his treatment in regard to exposing me to additional radiation or chemo. I hope he is right, but he has been at this for a long time and seems to be up on the latest research so I have decided to trust him.

Bots is the name my granddaughter gave me, so I love it. My picture is a picture of a statue dedicated to "strong women" in the Bay Area. I am posing with my granddaughter (now eight years old) at the base of the statue. She and I are also strong women. At least I try to be--some days it's not so easy.

Lori

SuziDezi's picture
SuziDezi
Posts: 25
Joined: Dec 2009

Hi ladies

This site is like a friendly staff room where you can talk about shared experiences. It has helped settle my mind as I work through the diagnosis of stage 1C UPSC (tumor extended to serosa but not through, no node involvement) that I received December 8, 2009 following a radical hysterectomy (Novemeber 2, 2009 - everything out). As with just about everyone else here, it was a real shock as no one had ever even suggested that this was a possibility. The doctors had painted the worst case scenario as very treatable because they all thought that the positive pap and slight bleeding indicated endometrial cancer and the D&C (September 18, 2009) did not show signs of advanced disease. The information you gals have provided sure helped formulate my questions and accept a treatment plan. I will begin chemo at the beginning of January (6 cycles of 21 days) then 5 weeks of external radiation (no brachy)The doctors are optimistic - but as we all know there are no guarantees. I will keep you posted as things progress - it is my way of giving back some of the support you have given me so far.

Happy holidays everyone.

Suze

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

Welcome! You're right: this place is like no other...my mind is so much easier after finding this board. Thanks for sharing...and best wishes to you as you continue your journey!

Hugs all around!
Cecile

california_artist
Posts: 850
Joined: Jan 2009

It's how we all feel. We are delighted to welcome you, and saddened/sorry you are having to be here.

The best advice I can give you is to get copies of every single lab, CT, surgery report, chest x-ray, whatever test they do to you. Having this information will prove invaluable in the future as you progress through this journey.

For instance, since you are not having brachytherapy, I will assume your cancer was not located in the lower portion of your uterus. But, without your report to refer to, you don't have that information. Most hospitals will also give you a copy of the cd where the results of both the written report and the actual ct scan can be taken home and viewed on your computer. Using the wheel on the mouse allows you to travel through your body. It's very, very interesting. My hospital never charges anything for these cds. Some have said that theirs does. If you ask the doctor's office for it there might be a charge. i would go to the hospital where the test/scan was done. You can usually get all results within a few days, so there's no need to wait the two or three weeks til you see the doctor and you have a chance to digest the information and come up with questions you need the answers to.

I've found if you wait til the appointment, the news can cause your mind to shut down and you end up getting very little out of the appointment and have to reschedule to have your questions answered, and in some cases you feel like you might not want to bother the doctor and end up not getting the answers you need.

Anyhow, best of luck in your journey. Due to there being so many women on the board, there are usually answers to any question you might have, along with a huge amount of hope, caring and empathy. That last one, empathy is something you rarely get from your doctor, they mean well, but have no idea what you are actually going through.

You are not only your cells, which is what they seem to treat and be able to relate to.

As always, love, hope, health, joy and success,

Claudia

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

I too am a 1C UPSC. If I were to do anything different this time around (dx 10/2006) rather than the 6 prescribed chemos, pelvic rad 25 days, and 3 brachys... I would skip the 25 days of radiation. Seems the standards may be 'leaning' that way? Glad to see you found us and sad to know the reason. Hugs and happy holidays.

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Sorry you are having to join this discussion board. Wishing you the best of luck with your chemo and radiation. I can remember the anxiety of getting the first chemo treatment. All of the unknown questions of how I would tolerate it. I have to say that it was not nearly as bad as I had anticipated it to be. I had very few side effects from the chemo. If I had not lost my hair, I would have wondered if they were giving me all those strong drugs. I had some problems after my 4th chemo after I had had radiation. There was no pain with the radiation treatments. I had some nausea from the radiation, but never did throw up. Fortunately I have not had any long term effects from the radiation, like some of the others have had. Hoping you have family and friends for support as you go through this journey. In peace and caring.

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

I haven't been on the last few weeks with my vacation and new job. Unfortunately, it's amazing how many new people have posted. I'm glad that they all found this site and sure that they will find very useful information. When I was initially diagnosed, I was also very surprised. In my mind I was going through peri-menopause. But now I'm through the surgery and my 4 brachy treatments and like everyone else cautious about what the future holds. With this experience I have realized that each day is a gift and that we need to live each one to its fullest. Also, stress is a major problem and recently I have transferred from one postition to another in hopes of easing some stress.

akunzel's picture
akunzel
Posts: 13
Joined: Dec 2009

I'm April. On December 18th I received a pathology report from a D&C that showed endometrial adenocarcinoma, Grade 3 cells, papillary serous in appearance. Saw a gyn/onc at Univ. of Wisc. Madison Cancer Center today. He wants to see the original pathology slides to verify the diagnosis. Total radical hysterectomy of uterus, ovaries, fallopian tubes, cervix, lymph nodes and omentum scheduled for January 15th. DaVinci is not an option, as my uterus is enlarged to the size of a 12-13 week pregnancy, and I've never had children. Staging and pathology will take approximately a week after the surgery. If UPSC is confirmed, chemo will start approximately 4 weeks after surgery.

I'm 42. I have PCOS. I have had issues with irregular, heavy periods for over a decade. I've been to over a dozen different doctors over the last 15 years. Although I've had multiple doctors tell me my uterus was enlarged, I was always sent home with "there's really nothing wrong, and you're too young for anything serious."

I got fed up this year when I had two months straight of heavy bleeding with large clots. Saw a new gynecologist in October, referred by my PCP. He did a D&C/hysteroscopy on Oct. 16. Three weeks of hell followed - the heaviest bleeding I've ever had, soaking through pads in 1/2 an hour. I ended up anemic (hemoglobin level 8), needing a transfusion on Nov. 6. The pathology report came back hyperplasia without atypia. His recommended treatment plan was a Mirena IUD. I was not satisfied with his plan. I sought a second opinion. The first doctor had not done a PAP, so the new doctor did one on Nov. 19th. That came back labeled suspicious. A colposcopy was done Dec. 3, and at that time he noticed strange cells on the interior of the cervix, so he did an endometrial biopsy. That came back with the cancer diagnosis, which confused him as the Oct. D&C had no atypia. He scheduled another D&C/hysterscopy, which happened Dec. 15th.

I'm angry that it was initially missed. I'm angry that I've been saying for a decade that what I was dealing with was not normal, and no one listened. I started requesting a hysterectomy 5 years ago because the heavy bleeding affected my every day life so much. No one would consider it - especially because I don't have children. Apparently stating that you don't want children carries little weight.

That being said, I'm thankful I switched doctors this year. I'm thankful the first doctor failed to do a PAP and that the second doctor noticed what he did.

I'm hopeful this is being caught at an early stage.

princepack's picture
princepack
Posts: 18
Joined: Dec 2009

Hi. I'm Katy, 42 years old, and I have 3 biological children ages 23, 19, and 17. I will be having a complete open abdomen hysterectomy on December 29, 2009 including the removal of uterus, cervix, fallopian tubes, ovaries, lymph nodes - including aortic lymph nodes, and omentum. I was told that I had cancer cells from an endometrial biopsy (biopsy on 12/7) on December 11. Saw surgeon who told me that the cancer cells were papillarian on December 15 and scheduled the hysterectomy.

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Wishing you both good luck with your hysterectomies and staging. I hope you have only Stage 1. I know the waiting is hard. Sorry to hear about your UPSC diagnosis. I am surprised that the diagnosis was made with your biopsies before surgery. My pap and colposcopy showed atypical cells highly suspicious for adenocarcinoma. After my hysterectomy (last January) and staging it showed Stage III-C UPSC. Hope all goes well with both of you. Sorry you have to join our site. In peace and caring.

princepack's picture
princepack
Posts: 18
Joined: Dec 2009

Thank you for the welcome Ro. I'm sorry we had to meet this way also. I'm scared a little about my surgery, but I believe everything will be OK.

akunzel's picture
akunzel
Posts: 13
Joined: Dec 2009

My thoughts will be with you for your procedure tomorrow.

princepack's picture
princepack
Posts: 18
Joined: Dec 2009

Thank you April. Surgery went well, now just trying to recover as the rest of my internal organs learn to work with all of that extra space I guess. Wow sometimes it is very painful. I am managing though. The best news is that the pathologists could not find one cancer cell anywhere in anything, endometrium, uterus, cervix, ovaries, lymph nodes, omentum, and part of vagina that was removed! They even went back to original biopsy to make sure there really were cancer cells there and there were! I feel somewhat hypocritical to be so happy for myself, yet I am still so sad for all of you here who are still undergoing treatment, etc. May God be with you all. Katy

akunzel's picture
akunzel
Posts: 13
Joined: Dec 2009

Oh my gosh - no reason to feel hypocritical at all! I think we're all happy for you, too ;) I hope my surgery on the 15th goes as well, and has similar results.

clscurnutt's picture
clscurnutt
Posts: 26
Joined: Nov 2009

I was diagnosed with endometrial cancer at the end of May. My GYN did a radical hysterectomy. She sent me to a GYN Onc. who did robotic surgery on the lymph nodes. He removed 12 and 2 were positive--one each from the left and right side--with a clean pelvic wash. So, began the treatment. I had 3 carboplatin sessions. The Zofran was a life saver as far as nausea goes along with Miralax for constipation. I changed my diet during that time adding more fruits and vegetables and fiber. I felt pretty good! Then I started radiation therapy--28 IMRT sessions. First couple of weeks were okay. Got thru Thanksgiving with a decent meal. Had already begun reducing the fiber in my diet. My last radiation session was Tuesday, December 29. Thank goodness, because, I was ready to can the whole effort because I was feeling so bad. But I got through it. Now I'm dealing with the daily diarrhea sessions.

I've read other postings here and elsewhere. During my first and second radiation treatments, I couldn't control the tears. Same thing happened during the last two. in the middle sessions, the buzz of the machine was sometimes overbearing. But now, this too has passed. My next appointment with the gyn/onc is on the 11th and radiation oncologist is in March. What I'm really looking forward to, now, is getting my diet back to some semblance of pre-radiation levels.

thanks to all of you for sharing. It's really the best medicine!

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

I am sorry we are meeting this way, but I am so glad you have found this site. It is full of generous, experienced women who are so willing to share their knowledge, experiences, suggestions and humor!

I am so glad that you have finished your treatment.....now Life begins again!!

I am curious....what type of endometrial cancer, Grade and Stage do you have?? Radiation did get rough by the end and I was so happy it was OVER!! It does take some time to get your GI tract back to normal, and sometimes it never gets "normal" but it gets a WHOLE lot better!

Best wishes to you and may you remain NED forever!!

Karen

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Hi All,

I'm another with UPSC, current age 58.

My Story: Diagnosed late Dec 07 thru endometrial biopsy following abnormal cells on Pap at annual. Had also just had 'appendectomy' which showed cancer cells in surrounding tissue and omentum, presumed to be recurrence of breast cancer: BC in '93 treated with surgery and chemo (onc said radiation unnecessary :( ) Local recurrence in '99 with surgery, radiation and Tamoxifen regimen. Early '06 (still on Tamox) major uterine bleeding episodes, D&C - multiple polyps, "no cancer found." Bleeding resolved, no symptoms except growing abdomen and increasing fatigue. All Docs - 'lose the stomach'.

Jan '08, underwent total hyst, plus removal of omentum and spleen, multiple lymph nodes, multiple small growths on small and large intestine. No primary found - considered to have gone with the '06 D&C! Treated with Taxol & Carboplatin. CA125 returned to normal until over 200 in 01/09. CT/PET showed lymph node activity in groin area. Chemo in planning, May 09 repeat CA125 normal, CT scan (6/09)showed nodes resolving. Repeat in Sept - nodes gone but new activity in para aorta nodes and elev CA125. Repeat scan in Dec showed nodes unchanged, possible abn. in liver, lung. No treatment since June '08. Appt tomorrow re start new course of chemo. It's been a roller-coaster ride for sure.

Just recently found this site - the opportunity to communicate and share with others, in this situation is priceless! Thank you all for being here -- although I wish you didn't have to be. I'm in San Diego area being treated at UCSD Medical Ctr.
Annette

yougoodsis
Posts: 3
Joined: Jan 2010

I just found this site as well. I am writing for my sister who I am encouraging to join the group. She was diagnosed at age 55 with with no symptoms and in perfect health. She had a hysterectomy in Dec 2008--UPSC also spread to the ovaries. She had chemo Jan-June 2009 followed by radiation July-Aug 2009. PET scan clean Summer 2009. In Dec 2009 her CA-125 increased so Dr. ordered another scan which shows some evidence the cancer has returned. She is due to repeat her CA-125 in two weeks.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

It's a heck of a club isn't it!!!! But you've earned your membership.

Glad you are hanging here with us. It is a good group.

Keep the faith, blessings to you all. Mary Ann

deanna14
Posts: 733
Joined: Oct 2008

Glad you found this site, sorry you need it! There a lot of supportive compassionate ladies here!
God Bless you and your families!

SuziDezi's picture
SuziDezi
Posts: 25
Joined: Dec 2009

This is my second post although I have been a frequent visitor to the site. Up to now I have had nothing to add to the wealth of information you ladies have posted and even now my contributions will be mostly redundant. In fact, I have read my own story many times on this site - healthy, unsuspecting, shocked, etc. The medical community does not have this cancer on its radar screen and seems surprised whenever it surfaces - strange!? In the hopes that this group can help change that I am becoming a more active member of your group. Here is my profile:

Suze:
Stage I-C UPSC, radical hysterectomy 02/11/09; midway through first round of carboplatin/paciltaxol (January 6); 5 more infusions coming up and 5 weeks of radiation after the chemo. I am 67 years old and live in Ottawa, Ontario, Canada.

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Hi Suze
Glad to hear you are only Stage 1 -- just wanted to introduce myself as I went to hi-school and college in Ottawa although I now live in San Diego CA. I was Stage IV at diagnosis / surgery in 1/08 and am about to start new chemo for recurrence. Wishing you an excellent result from your treatment!
Annette

Northwoodsgirl
Posts: 201
Joined: Oct 2009

It looks like I haven't responded to the roll call so here goes! My real name is Lori. I live in Minnesota. I am 53 yrs old. Diagnosed May 2009 with Stage 2B endometrial cancer. Cancer was in my uterus and cervix. Tested 22 nodes-all negative. Radical hysterectomy June 2009- open procedure, chemo started July 2009. "Sandwich" protocol- Taxol and Carboplaten every 21 days x 3 then 28 radiation tx with 3 being internal brachytherapy. Resumed chemo in Nov. 2009 and last chemo Dec. 30th. Happy new year!
Barium CT scan scheduled for Jan. 29th.
Now working on healing my body-nutritionally, spiritually and physically. Its hard not knowing if the cancer is really gone or not. My mother died of uterine cancer at age 72 yrs. Stage 2B in 2005, one year after diagnosis. She wasn't treated with Taxol/Carboplaten-just Megace and radiation due to immediate post op complication- she split her incision open on the inside while vomiting the first day post op. She told the nurses and doctors that she felt a popping noise on the inside while vomiting. Nurses and doctors told her she was fine. She went home on post op day 4 and within a couple hours her abdomen split open and she had to heal from the inside out which delayed her starting chemo.

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Sorry you have had to join our site. Glad you were only stage 2B. Glad you made it through your chemo and radiation. It does take many months after your treatment ends to get your body back to pre-treatments. So don't get too discouraged when you don't recover as quickly as you think you should.

Sorry to hear about your Mother's difficulties. Sorry she was not able to get treatments due to slow healing. It must have been very difficult for you to see your Mother go through everything.

I am curious as to why you are having the Barium CT? Are you allergic to the IV dye? Wishing you good results with the CT scan. In peace and caring.

Northwoodsgirl
Posts: 201
Joined: Oct 2009

I just assumed that the CT is to look for any changes or tumors. I did have a reaction to the contrast media that I drank prior to a CT prior to my hysterectomy. On my pre op chest xray they noted a shadow on one of the lobes of my lungs. Thus the CT was ordered. My creatinine must have been off because they ordered a drug called Mucomist to protect my kidneys and I had a violent reaction--sooo sick and vomiting, headache the next morning.
This was in the morning of the day I was to have surgery ---so spent about 6 hours in the ER prior to my surgery which was done late in the day- 6PM.
So I think they know I am sensitive to the contrast dye.
I know I should have asked about why the barium but that day I was not doing well emotionally. I had strained my back and actually fainted in the lobby of the doctor's office due to the pain. I was told to see my internist when I called the nurse at oncologist to see if I could get a muscle relaxer for my excruciating back pain. Ended up taking a 1 block ambulance ride to ER where I was prescribed the Soma muscle relaxer (LOL)
None of that would have happened if they had just precribed the Soma-allowed me to take it and then come into the doctors office.

Mana's picture
Mana
Posts: 3
Joined: Jan 2010

Hi I'm Allison and newly diagnosed with leiomyosarcoma. Has anyone else here been diagnosed with that? I haven't had my surgery yet, I should be getting it in the next two weeks. I had what was diagnosed by pathology as a fibroid 4 years ago, but kept having growths in my uterus. I had a second myomectomy 1.5 years ago. Something grew back again, and they reviewed my original slides and said that I was misdiagnosed and I've had leiomyosarcoma all this time. I'm really angry and scared. I'm afraid that the surgeries have spread the cancer cells all over.

If anyone else has been diagnosed with this could you contact me? I've done some research but there isn't mush on leiomyosarcoma.

Thanks...Mana

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

First, hello to everyone and a big hug to you all for sharing yourself here. Reading the posts makes me feel a lot less alone. Thank you all for being here.

I am 59 yrs old for one more day. Tomorrow is my birthday! Thought I would post my story while I am young. HA! HA!

M. D. Anderson Cancer Center in Houston, Texas is where I was diagnosed and am receiving treatment. Diagnosis is stage IIIC advanced endometrial cancer. One lymph node involved out of 30 removed, radical hysterectomy (Oct 2, 2009), removed the cervix, fallopian tubes, and both ovaries (they even found one that I thought had been removed in 1974 for an ectopic pregnancy). Had 25 external radiation treatments, 3 internal brachy treatments, and Cistoplatin chemo during that time in Nov/Dec 2009. Docs let me rest up for 4 weeks, although I felt fine, and then started Taxol/Carbol Jan 11, 2009. Getting another treatment Feb 1, this coming Monday. Some side effects but, overall I feel great. Go to work everyday. I get a little tired sometimes and rest when that happens.

Things look pretty good for me. I tolerated the surgery pretty well. I am doing fine on the chemo. CA 125 was 471 in Sept. Is now 13 as of Jan 11. Steadily declined since
surgery...leveled off at 23 for 6 weeks and then went to 13. I feel healthier than I have in years. Looking forward to doing a lot of fishing this summer with hubby.

Started losing my hair yesterday. Yep, I still have a full head of hair. Can't explain it. I think it will fall out soon. I have been preparing myself for it for months. Decided I am going to buy some big ear rings and wear dark lipstick. Maybe get a lollypop like Telly Savalas(some of you might not remeber Kojack an old TV show).

My philosophy through all of this is that I have a choice on my attitude about having cancer. I decided to make the best of it whatever happens and to face it as a challenge rather than a setback.
Looking forward to getting to know you all. Norma

A1pena's picture
A1pena
Posts: 93
Joined: Jan 2010

Nice to 'meet' you! I was drawn to your story since my mom is about the same age as you- turning 59 this year. She goes into surgery this Monday for what they believe to be a stage 3. We've all been really worried but I must say, your positive attitude made me feel a little better :) I look forward to hearing more from you.

Kind Regards,

Amanda

thank you
Posts: 77
Joined: Jun 2009

You are an inspiration.
Thanks for posting your thoughts.
I wish you the BEST
Chrysoula

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Welcome! You have found a great site to find answers, get support and share with others. Its amazing that you have kept your hair. I lost mine within 2 weeks of my first dose of chemo. I finished my chemo on Dec. 30th. You are getting care at an excellent center.
I remember Kojak and got a chuckle out of your reference and idea. Keep the joy in your life!
Lori

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Thanks for posting your story. I love your positive attitude. It will take you a long way on this journey you are on. Glad to hear your surgery went well. Sounds like radiation went well, too if you have been able to continue to work through all of it. I hope you continue to do well with your chemo, too. Your treatment has been a little different than most of ours has been. Good news on the CA 125, too. Hope you catch a lot of fish. In peace and caring.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I like your attitude. I think this goes a LONG way in fighting cancer - making a conscious decision. AWESOME.

Many blessings, Mary Ann

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

Thanks Mary Ann, Amanda, Chrysoula, Lori and Ro10!!
Appreciate your kind comments about the attitude. It really is the only thing that I have control over, my attitude.

Today is my 60th birthday and my hair is falling out in big chunks. Everytime it happens instead of being upset I think, well if this stuff is killing my hair I hope it is killing any cancer cells left in this old body. Go get 'em chemo!!! Kill the little buggers.

You guys have a great day!!! Again thanks for the response. I am going to buy some cool hats today. Talk again soon.
Norma

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Enjoy your new hairdo!! Once I made peace with my bald head, it was so easy to care for. People got used to it and I got treated well. Most everything has a silver lining. I'm glad you see the glass half or completely full. Keep it up.

Blessings to you and yours. Mary Ann

Caradavin
Posts: 23
Joined: Jan 2010

Hi. I posted a few times before doing this roll call. My name is Amy. I was diagnosed with serous papillary adenocarcinoma endometrial cancer (I don't even know that that is, to be honest) the day after my birthday. I got the phone call to come in during my birthday party on June 4th, 2009. That is why I will never forget it. I recently received a treatment follow-up biopsy and have been labeled cancer-free. I have another biopsy in April, and if I make the six month mark then I will be going to my oncologist to be cleared for stimulation to have babies! That is what I'm excited about. I tried for many years to have children only to lose. I am hoping I will be able to conceive during my honeymoon in June. So, I don't know where I am in treatment, but it's a good story, right?

shavilyn
Posts: 4
Joined: Feb 2010

My motto was "Shower, towel, go"

shavilyn
Posts: 4
Joined: Feb 2010

Hi,

My name is Shari (Bridgewater, NJ). In 2005, at the age of 42, I was diagnosed with two primary cancers: Invasive Breast Cancer Stage 1A, and Endometrial Cancer Stage 3 (with lympho-vascular invasion). My peritoneal wash came back inconclusive. Have had a TAH/BSO (uterus, cervix, tubes, ovaries), and nodes removed. I was on 6 months of mega-doses of Adriamycin and Cisplatin, followed by 6 weeks of (as they said) very strong radiation, followed by 3 sessions of intra-vaginal radiation (you ladies know...in the thick, lead-lined room) replete with Geiger counter readings. Sound familiar???? While my doctors told me that they can't give me the 5-year "yay, you're cancer-free" speech (because of the "late stage"), I am happy to reach the 5-year mark and look forward to every day I am given.

I know that a lot of you are currently in treatment, and I send you all a {{HUG}}. With the different types of Uterine cancer, and treatments, we all walk a different journey, and yet, we don't walk alone. We all know what the treatments are like, and they stink. HANG IN THERE!

akunzel's picture
akunzel
Posts: 13
Joined: Dec 2009

Surgeon called and reported that according to the new guidelines effective January 1st, I'm stage 1A. If he went by the previous staging, 1B. Either way, we caught it early! I'll find out tomorrow what we'll be doing for chemo.

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Stage 1 a is about the best news you could receive. I am so happy it was caught early. In peace and caring.

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

My oncologist and pathologist fought over my staging, she wanted IB and he wanted IIA. Pathologist won so I was staged at IIA just because the cancer was touching my cervix by .0004mm. Sneaky little bugger was trying to get out.

Great you caught it early!

MIND, BODY AND SOUL!

Hugs,

Marge

Aeaea
Posts: 8
Joined: Jan 2010

I don't have USPC or clear cell but I would guess I have some metastasis given that I found out I have uterine cancer because I landed in the ER with pulmonary thromboembolism, and cancer makes this 9x more likely, and I assume it means the cancer cells escaped, though none found in my 4 lymph nodes extracted or abdominal cavity after surgery.

So far, the shortness of breath from PE and scariness of a pounding, racing heart have been worse than the 3 chemo treatments. But I get more energy, breathe better, and have a less-racing heart as time goes on (3 months since PTE started, it can take 6-12 months to go away), and hike 4 miles a day and go to the gym 2x/week.

I guess my odds of survival are not so good with a grade 2 aggressive type and 3A diagnosis, sigh. What -- 50/50?

I would love to join a support group because you can probably tell that I'm depressed and scared from the above comment. But I was very depressed by all the recurring ovarian cancer members at the Walnut Creek, CA wellness center (no one had uterine cancer). The discussions were about all the bad side effects of various treatments and who had died -- totally scary.

I guess there aren't many people with advanced stage uterine cancer out there, and hence, less research / clinical trials to make this more of a treatable disease like breast and ovarian cancers.

Well, I'd better sign off before I depress everyone...

Caradavin
Posts: 23
Joined: Jan 2010

You hike and go to the gym? Wow! I was always told that lifted depression, but maybe there are cases (such as these) where that is not true. I bet if you browse the roll call and other ares of this particular forum, you will find there are survivors and fighters who are in your area of diagnosis or close. Look for inspiration. I agree that some support groups can be downers. Maybe I have the idea of support groups wrong, but I thought it was about supporting each other, not only venting and negativity. I have yet to find an in-person support group that meets my definition. This forum is great, though, wonderful people and very understanding. Kinda makes a person want to support others, too.

d.lee
Posts: 31
Joined: Jan 2010

hi my name is diane i was diagnoised in 3/2009 with uteran cancer stage4 i started chemo in april 2009 im still doing chemo im on doxil its really working for me my numbers are really going down there at 47 right now. at first my doctor started me on taxil,platinum but it was a really bad chemo for me i could not stay on it i had a very bad time with it .i have not put myself on the board yet i am about to do that so this is my first time talking. i live in victorville california i am 47 years old and im taking one day at a time .

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