New To All Of This - Overwhelmed

NH25

Abbycat2 said:

NH25 you have come to the right place.

 

The ladies here have given you wonderful advice.  Do you know what kind of uterine cancer you have?  When I had my uterine biopsy, I was told that I had a grade 2 cancer but not much else.  It is overwhelming and terrifying to be diagnosed with cancer, but eventually you will gain some level of acceptance.  It is not easy and I would not want to go through it again.  If I have a recurrence, it would still not be as terrifying as it was in the beginning of my cancer journey.

Uterine cancer, like other cancers, comes in varieties.  The endometriod, or garden variety type that 90% of the women are diagnosed with is usually a non-aggressive form.  Uterine cancer is both staged and graded, most often after a hysterectomy when the female organs, lymph nodes, omentum, and pelvic wash are analysed in the lab.  A low stage and low grade are always better in terms of prognosis. There are four cancer stages with stages 3 and 4 considered advanced stages.  Grades are 1 to 3 with 3 being a cancer that looks the most bizarre and spreads quickly (metastasis).  I was diagnosed after surgery with uterine papilliary serous carcinoma, stage 3, grade 3.  Surgery was almost 2 years, 4 months ago and I am still here in spite of the lousy diagnosis.  Initially, I obtained both my pathology report and my surgical report for my records.  I sought two other opinions regarding treatment before I started on 6 chemotherapy rounds. After careful consideration of my particular situation and much research, I chose not to have radiation, including brachytherapy. 

I wrote all my questions down before I saw the gynechologic oncologist and had someone else with me each time initially for support and for a second set of ears. Hopefully, you are having a gynechologic oncologist do your surgery as these specialist are the experts and know what they are doing.

Please keep us posted.  I wish you the very best outcome, NH.

Cathy

Thank You

Hi Cathy,

All I know at this point is that they keep calling it endometrial cancer and I was told it was range 2-3. My doctor is a gynecologic oncologist and I agree these are hopefully the experts.

It's wonderful to hear that you had one of the more advanced stages and ranges and you are doing well.

As I get further into this and know more about what treatments are being recommended, I would love to talk more with you about your decisions about your treatments.

Thank you again for your kind words and guidance.

Annmarie

(NH25)

NH25

pinky104 said:

NH25

 All I ever did was follow my oncologist's orders.  I had the standard treatment for my cancer, which was 6 rounds of chemo, 3 weeks apart.  I had carboplatin and paclitaxel ("Taxol") given to me in a port that was put into my chest.  I had to go back weekly for bloodwork, and at one point, my blood count was so low, I had to have a transfusion.  My cancer was the highest stage possible, stage IVb and my cancer was grade 3, a very aggressive one called Uterine Papillary Serous Carcinoma (UPSC).  In spite of the high stage and grade of my cancer, I have had no evidence of disease since my surgery and chemo ended, and that was 5 years and almost 5 months ago. I figured I'd die from my cancer in all likelihood, but here I am, alive and well.  There is hope!

Thank You

Hi pinky,

thank you so much for sharing your story with me. It is so wonderful to hear and makes it a little easier to believe there is hope. I am so happy to hear that you are doing well.

Thinking good thoughts for you and all of the wonderful women I have met here.

Annmarie

(NH25)

Abbycat2

NH25 said:

Thank You

Hi Nancy,

thanks for sharing. I have been trying to stay calm and positive as I wait for more information, but you know...sometimes the fear gets the better of me.

I do know that my cancer is between range 2-3. That's about all they could tell me until my surgery in 4 days. I do know they are going to do a complete hysterectomy and remove all of my lymphnodes. I know it's just a waiting game until the pathology reports come back.

I feel like it's a bit of a tight rope walk trying to balance hopefulness with reality. I'd hoped it would be the most common type, but not sure if that is still possible with them telling me it is in the 2-3 range?

Thank you for your thoughts and input...it is greatly appreciated.

Annmarie

(NH25)

 

NH, forgive me, but I don't know what you mean

by range 2-3. Are you talking about the stage of your cancer, that is how far it has grown and spread, or are you talking about the grade? Grade refers to how aggressive and bizarre looking the cancer is. BTW, a woman can be diagnosed with more than one type and grade of cancer. Ask your doctor if your omentum will be removed; with a grade 2-3, (S)he may remove it if your cancer is a grade 2 or 3. The most common type of uterine cancer called Endometriod endometrium adenocarcinoma- whew- what kind of name is THAT? Well, this garden variety type is most often a low grade (1), but not alway: sometimes it is a grade 2 or 3.

Hoping that all goes well for you!

Cathy

 

 

Kaleena

Hello Annmarie:
Sorry you

Hello Annmarie:

Sorry you have to find this site.  However, this is doable.  I went in for a routine hyterectomy and upon my checkup was told that they found cancer and had to go for another surgery for staging.   I was staged at Stage 3a, Grade 2 Endometrial Adenocarcinomo.   It was found in my uterus, cervix and left ovary.   However, that was back in September, 2005 - Ten years ago!   I did have chemo and brachytherapy.   I was told at that time that I wasn't curable but treatable.   I have had several ups and downs, several surgeries, but haven't required chemo since the original time.

I would ask though if they will be also removing your omentum and your appendix.   Mine was removed at my staging.  My doctor indicated that these are places for recurrences to occur.

Since I had severe endometriosis my organs and insides are all attached to one another so each surgery takes long just to remove the adhesions. 

The "shock" hits hard at first - I screamed in my pillow and then got in my fighting mode.   Also, it is ok to question the doctors.  Don't ever let them make you feel that you are asking silly questions.   And if something doesn't feel right, seek a second opinion.   I have changed doctors several times until I found a good fit for me.   

This site has helped me tremendously with questions I should ask.  Also, don't research too much on the internet.  You can get some very old and outdated information which can scare the crap out of you.   One of the posters on these boards recommended some current sites like the NICC?   I can't remember at the moment.

Also, Annmarie, if you are feeling stressed, this is a good place just to vent.  Sometimes we don't want to worry our loved ones.

My best to you,

Kathy

NH25

Kaleena said:

Hello Annmarie:
Sorry you

Hello Annmarie:

Sorry you have to find this site.  However, this is doable.  I went in for a routine hyterectomy and upon my checkup was told that they found cancer and had to go for another surgery for staging.   I was staged at Stage 3a, Grade 2 Endometrial Adenocarcinomo.   It was found in my uterus, cervix and left ovary.   However, that was back in September, 2005 - Ten years ago!   I did have chemo and brachytherapy.   I was told at that time that I wasn't curable but treatable.   I have had several ups and downs, several surgeries, but haven't required chemo since the original time.

I would ask though if they will be also removing your omentum and your appendix.   Mine was removed at my staging.  My doctor indicated that these are places for recurrences to occur.

Since I had severe endometriosis my organs and insides are all attached to one another so each surgery takes long just to remove the adhesions. 

The "shock" hits hard at first - I screamed in my pillow and then got in my fighting mode.   Also, it is ok to question the doctors.  Don't ever let them make you feel that you are asking silly questions.   And if something doesn't feel right, seek a second opinion.   I have changed doctors several times until I found a good fit for me.   

This site has helped me tremendously with questions I should ask.  Also, don't research too much on the internet.  You can get some very old and outdated information which can scare the crap out of you.   One of the posters on these boards recommended some current sites like the NICC?   I can't remember at the moment.

Also, Annmarie, if you are feeling stressed, this is a good place just to vent.  Sometimes we don't want to worry our loved ones.

My best to you,

Kathy

Thanks

Hi Kathy,

nice to meet you. Thank you for the good advice and I do have a running list of questions to ask when I go in for my surgery in a few day. I will add the questions you suggested.

I'm so happy to hear that you have had successes over the last 10 years since you were first diagnosed. I appreciate you sharing.

I'm currently doing ok, I guess. Trying to follow the advice I got from many ladies here, which is to breathe and take it one step at a time...get through the surgery.

Thank you again for your kind words.

Annmarie (NH25)

ncg007

One step at a time

Annmarie,

Welcome to this site, sorry that you needed to join.  Not much I can add in addition to what the others have already said.  Except do take it one step at a time or indeed you will be overwhelmed and worry about nothing.  Wishing you a successful surgery and if you do find you need additional treatment, I can't stress enough how important it is to get multiple opinions no matter even if you like your initial doctors.

Nancy

NH25

ncg007 said:

One step at a time

Annmarie,

Welcome to this site, sorry that you needed to join.  Not much I can add in addition to what the others have already said.  Except do take it one step at a time or indeed you will be overwhelmed and worry about nothing.  Wishing you a successful surgery and if you do find you need additional treatment, I can't stress enough how important it is to get multiple opinions no matter even if you like your initial doctors.

Nancy

Thanks

Hi Nancy,

thanks for the advice and the good suggestions. Everyone on here has been wonderful so far. Wish we were all meeting under better circumstances!

Thanks again,

Annmarie

(NH25)

TeddyandBears_Mom

NH25 said:

Thanks

Hi Nancy,

thanks for the advice and the good suggestions. Everyone on here has been wonderful so far. Wish we were all meeting under better circumstances!

Thanks again,

Annmarie

(NH25)

Hi Annmarie and welcome to

Hi Annmarie and welcome to this great board of women. Sorry for the need though.

The only thing I might add to what others have said is to perhaps consider an anti-anxiety med. I have never been one to take "stuff" but I was glad I listened to this advice for the beginning of my journey. Lorazapam worked well for me. Just a very small dose and it has a calming effect but doesn't make you loopy. My doctor gave me three refills but I haven't needed them so far. So, just to have them when the out of the blue anxiety hit was very helpful for me.

Good luck in your journey and please reach out for anything! Someone will have an answer.

Love and Hugs,

Cindi

Abbycat2

TeddyandBears_Mom said:

Hi Annmarie and welcome to

Hi Annmarie and welcome to this great board of women. Sorry for the need though.

The only thing I might add to what others have said is to perhaps consider an anti-anxiety med. I have never been one to take "stuff" but I was glad I listened to this advice for the beginning of my journey. Lorazapam worked well for me. Just a very small dose and it has a calming effect but doesn't make you loopy. My doctor gave me three refills but I haven't needed them so far. So, just to have them when the out of the blue anxiety hit was very helpful for me.

Good luck in your journey and please reach out for anything! Someone will have an answer.

Love and Hugs,

Cindi

Annmarie, I have been thinking about you

 

and am wishing you the VERY best outcome tomorrow with your surgery.  I hope it goes as smoothly as possible and that you recover quickly.  You will get through this, I promise- and there is light at the end of the tunnel. 

Please keep us informed of your progress, Annmarie.

Bless You,

Cathy 

ConnieSW

Abbycat2 said:

Annmarie, I have been thinking about you

 

and am wishing you the VERY best outcome tomorrow with your surgery.  I hope it goes as smoothly as possible and that you recover quickly.  You will get through this, I promise- and there is light at the end of the tunnel. 

Please keep us informed of your progress, Annmarie.

Bless You,

Cathy 

Annmarie

good luck.  Will be sending lots of positive thoughts your way.

CheeseQueen57

Any good recommend on gyn/oncol in Philly area? Also new to this

I hope your surgery went well, AnnMarie!

I too am contemplating surgery in the very near future.  Pathology report from D&C indicates high-grade endometrial adenocarcinoma.  I realize that you don't really know what you are dealing with until surgery, but what does the "high-grade" on this pathology report indicate. Does that mean that it's most likely more invasive?  Also, does anyone have any recommendations for gyn/oncologist in Philly area?  I have appointments with doctor at Cooper MD Anderson and Fox Chase but would appreciate any input anyone might have. 

Sorry to have to join this club, but seems like a great bunch of gals.  Too bad under such circumstances

EZLiving66

CheeseQueen57 said:

Any good recommend on gyn/oncol in Philly area? Also new to this

I hope your surgery went well, AnnMarie!

I too am contemplating surgery in the very near future.  Pathology report from D&C indicates high-grade endometrial adenocarcinoma.  I realize that you don't really know what you are dealing with until surgery, but what does the "high-grade" on this pathology report indicate. Does that mean that it's most likely more invasive?  Also, does anyone have any recommendations for gyn/oncologist in Philly area?  I have appointments with doctor at Cooper MD Anderson and Fox Chase but would appreciate any input anyone might have. 

Sorry to have to join this club, but seems like a great bunch of gals.  Too bad under such circumstances

Hi Cheesy!!!

I am Eldri, 63, and was diagnosed with Stage II, Grade 3 (high grade) UPSC last September.  It is an especially aggressive form of endometrial/uterine cancer.  Welcome to our exclusive club where nobody WANTS to be a member - LOL!  Sorry I can't help with any doctor choices since I'm in Wisconsin but I've heard that MD Anderson is a first class place.  I know other ladies on this board have been there.

Please stay with us and let us know how your journey is going.  As you said, this IS a "great bunch of gals."

Love,

Eldri

debrajo

CheeseQueen57 said:

Any good recommend on gyn/oncol in Philly area? Also new to this

I hope your surgery went well, AnnMarie!

I too am contemplating surgery in the very near future.  Pathology report from D&C indicates high-grade endometrial adenocarcinoma.  I realize that you don't really know what you are dealing with until surgery, but what does the "high-grade" on this pathology report indicate. Does that mean that it's most likely more invasive?  Also, does anyone have any recommendations for gyn/oncologist in Philly area?  I have appointments with doctor at Cooper MD Anderson and Fox Chase but would appreciate any input anyone might have. 

Sorry to have to join this club, but seems like a great bunch of gals.  Too bad under such circumstances

Hi!

I am at M.D. Anderson with UPSC.  I am five years out from chemo.  I developed UPSC in July 2009.  I would recommend M.D. Anderson to anyone.  My Dr. is Kathleen Schmeller, with Dr. Karen Woo as head of the department.  All of the dr.'s there are good, but I like those two the best.  Let us know if we can help!  Best Debra(Jo)

NoTimeForCancer

CheeseQueen57 said:

Any good recommend on gyn/oncol in Philly area? Also new to this

I hope your surgery went well, AnnMarie!

I too am contemplating surgery in the very near future.  Pathology report from D&C indicates high-grade endometrial adenocarcinoma.  I realize that you don't really know what you are dealing with until surgery, but what does the "high-grade" on this pathology report indicate. Does that mean that it's most likely more invasive?  Also, does anyone have any recommendations for gyn/oncologist in Philly area?  I have appointments with doctor at Cooper MD Anderson and Fox Chase but would appreciate any input anyone might have. 

Sorry to have to join this club, but seems like a great bunch of gals.  Too bad under such circumstances

Hey CheeseQueen.

Hey CheeseQueen.  Welcome.

High grade does not mean it is more invasive, just more aggressive.  I have always believed the cancer can only be staged after they operate.  The stage determines how far it has spread.  Maybe this will help for uterine cancer:  

http://www.cancer.net/cancer-types/uterine-cancer/stages-and-grades

Editgrl

CheeseQueen57 said:

Any good recommend on gyn/oncol in Philly area? Also new to this

I hope your surgery went well, AnnMarie!

I too am contemplating surgery in the very near future.  Pathology report from D&C indicates high-grade endometrial adenocarcinoma.  I realize that you don't really know what you are dealing with until surgery, but what does the "high-grade" on this pathology report indicate. Does that mean that it's most likely more invasive?  Also, does anyone have any recommendations for gyn/oncologist in Philly area?  I have appointments with doctor at Cooper MD Anderson and Fox Chase but would appreciate any input anyone might have. 

Sorry to have to join this club, but seems like a great bunch of gals.  Too bad under such circumstances

Hi CheeseQueen!

Yes, too bad to meet under these circumstances but at least we have met!  Welcome.  The wonderful thing about this board is that whatever questions you may have, the odds are good that someone will have an answer or suggestion for you because they've had the same question or experience.  And always, great support.  Feel free to ask about anything, and I do mean anything!

Chris

loulou12

https://csn.cancer.org/discussion/comment/1531058#Comment_1531058

I see this was a quite awhile ago and hope you are doing well. I am 75 yrs. old. I have never had any major surgery or have ever had general anesthesia . I of course am post Mena pause actually since I was 45 yrs.old. My GYN put me on 1 mg. Estroil without Progestrone,saying such a low dose I did not need Progesterone . Make a long story, short...May 1st had heavy bright vaginal bleeding. Had Vaginal US and biopsy (first biopsy came back inconclusive, so basically had after all the US another a couple of weeks ago. Came back as FIGO Grade 1 Adenocarcinoma Endometroid. I am devastated and cannot stop crying off and on. I saw an oncologist/GYN yesterday. He wants to do a complete Hysterectomy Robotic Da Vinci. I am constantly googling and sometimes good and other time scary. I have to stop doing this, however I am searching for all positive I guess. I am scheduled for July 3. I have to do a CT w contrast preop. That is another thing, never had that Dye before. I am so depressed . I just never thought this would happen to me. No one actually thinks they will be on this end and it is awful. I just want to be okay again and enjoy my life. I have been dealing with waiting for results, tests, etc. for the past 2 months and it is exhausting and draining. I have a vegas trip w my husband August 30th and My God, it need to go. I hope I am healed by then. I also pray being it is grade 1 that the results (staging) of okay. So depressed, tears even as I am writing this.

Flag

ReplyLike

Care

NoTimeForCancer

loulou12 dear, it might be helpful if you could start a new thread? When you open the page and click on New Topic (the blue box in the upper right hand corner of the category) as this one is several years old. I know everyone would like to reply to you and give you support, but since they switched to a new format a few years some of us have had a heck of a time following these threads.

I would like to make one suggestion, everything you are feeling is normal, and you might want to consider asking for something to help calm you down some. I wish I had done this as I wasn't sleeping and just forcing myself to eat something. Like you, I had never done surgery or a dye contrast or antyhing - it is A LOT. Please try to take a breath. You will amaze yourself - I promise.

Mercorby

https://csn.cancer.org/discussion/comment/1706413#Comment_1706413

Hi,

I recommend going to https://www.sharecancersupport.org/uterine-cancer/. There are many resources and lots of information for you. There is a special bag of information that is free to all uterine cancer patients called BAG IT. It has a notebook to help you keep track of the information and test results from your doctors. You can leave a message on the helpline, and someone can help you with that (probably me).

Corby