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

Unknown

Ro10 said:

SuziDezi - Welcome
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.

This comment has been removed by the Moderator

susie1143

Newbies
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

Hello
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

akunzel said:

Hello
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.

42, upsc cells, hysterectomy on Dec. 29, 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

princepack said:

42, upsc cells, hysterectomy on Dec. 29, 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.

Welcome Katy and April
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

Ro10 said:

Welcome Katy and April
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.

Thank you
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

princepack said:

42, upsc cells, hysterectomy on Dec. 29, 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.

My thoughts are with you
My thoughts will be with you for your procedure tomorrow.

newbornbunny

daisy366 said:

newbornbunny
I was not informed either at first. I still don't feel as informed as many here. I don't think my docs wanted me to have much info - they seemed stingy with the gory details maybe to spare me anxiety hopefully.

This board has provided so much info and encouragement to be PROACTIVE. I was alone at first, and got my second opinion after gathering up my records, and now I have all these people to help answer questions and encourage me to ask my docs.

So get copies of your records, ask questions of your team, research online (nccn.com has treatment guidelines) and this board is here for you. Don't be shy - this is your life!!

Blessings, Mary Ann

Amazement
I have a growth on my labia by my vagina. Radiation therapy doctor said (on Nov. 12, 2009) that this is "scar tissue" and would go away. It has not gone away. Instead, it has grown bigger and has three points to it. Since it causes me great pain and seemed to be infected, I called this doctor last weekend. He sent me to the ER. While there I learned that my potassium level was life-threateningly low. No one checked my potassium level during radiation treatments. I spent next three days in hospital getting IV potassium. I also had X-rays and CT scans of my torso. I've always had many fatty tumors (also called lipomas). I had told doctors that I would never recognize a recurrence of cancer because of these lumps. Well, instead of some lumps, the imaging showed up white flecks scattered through my lungs and liver. My endometrial cancer was Stage IA. Doctors are amazed at what has happened to me. One doctor had told me that my cancer was the kind to have because it is so easy to cure. I got biopsies of two lumps on my belly, one right beside the incision for the hysterectomy and another one about three inches higher. Hospital doctor did not biopsy lung tissue or do anything about "scar tissue."

I have some ideas of what is going on. I'm keeping these ideas to myself. I have not had a good day since last summer, before July 10, when I was told that I had cancer. I just wanted to tell someone what has happened to me.

Probably I will have to retire because I cannot give my employer a fair day's work. I could use some good news. We all could.
Bunny

clscurnutt

Roll Call
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

clscurnutt said:

Roll Call
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!

clscurnutt
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

newbornbunny

newbornbunny said:

Amazement
I have a growth on my labia by my vagina. Radiation therapy doctor said (on Nov. 12, 2009) that this is "scar tissue" and would go away. It has not gone away. Instead, it has grown bigger and has three points to it. Since it causes me great pain and seemed to be infected, I called this doctor last weekend. He sent me to the ER. While there I learned that my potassium level was life-threateningly low. No one checked my potassium level during radiation treatments. I spent next three days in hospital getting IV potassium. I also had X-rays and CT scans of my torso. I've always had many fatty tumors (also called lipomas). I had told doctors that I would never recognize a recurrence of cancer because of these lumps. Well, instead of some lumps, the imaging showed up white flecks scattered through my lungs and liver. My endometrial cancer was Stage IA. Doctors are amazed at what has happened to me. One doctor had told me that my cancer was the kind to have because it is so easy to cure. I got biopsies of two lumps on my belly, one right beside the incision for the hysterectomy and another one about three inches higher. Hospital doctor did not biopsy lung tissue or do anything about "scar tissue."

I have some ideas of what is going on. I'm keeping these ideas to myself. I have not had a good day since last summer, before July 10, when I was told that I had cancer. I just wanted to tell someone what has happened to me.

Probably I will have to retire because I cannot give my employer a fair day's work. I could use some good news. We all could.
Bunny

scar tissue "growth"
It's been six weeks since I found the scar tissue growth on my labia and pointed it out to my doctor. Since then I have asked a nurse practitioner and two other doctors for help. Nothing has happened, except that I bought a doughtnut cushion.

My two biopsies were "inconclusive" and "dead tissue." I especially liked the dead tissue one. I've had a third biopsy of a shadow on my liver.

At first my two surgeons were so happy that my cancer was Stage IA. They were sure that they had stopped it.

Tomorrow I am calling my doctor back, since he said that his office would make an appointment for me to have the growth removed by one of my original surgeons. My doctor also believes that I should retire on full disability.

What do you think is going on with me? I have no reasons for any optimism, but having this "growth" removed and healed would help a great deal.

Newbornbunny

princepack

akunzel said:

My thoughts are with you
My thoughts will be with you for your procedure tomorrow.

Thank you April
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

princepack said:

Thank you April
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

Happy for you!
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.

Unknown

princepack said:

Thank you April
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

This comment has been removed by the Moderator

newbornbunny

Ro10 said:

newbornbunny Welcome to this site
I hope the radiation does cure you. That would be wonderful. Wishing you this best of luck. In peace and caring.

more amazing stories
My supposed Stage 1A endometrial cancer had metastasized even before my hysterectomy. My doctors never found the other sites.. I start chemotherapy on Wednesday, and poor health has forced me to retire. (My job was my only source of companionship and fun.) The "scar tissue" by my vagina is most likely metastasized endometrial cancer. I think I will try a Reiki master for my next cancer treatment. Has anyone else encountered anything like this? I hope not.

I'm going to "retire" from writing comments on this forum. I wasn't here very long. I thank you all for your kind words and support.

Newbornbunny

upsofloating

Newcomer to Roll Call
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

upsofloating said:

Newcomer to Roll Call
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

UPSC newcomer
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

yougoodsis said:

UPSC newcomer
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.

Welcome Ladies
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

daisy366 said:

Welcome Ladies
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

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

SuziDezi

deanna14 said:

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

Updating
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.