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Just told endometrial cancer

AnnNYC
Posts: 27
Joined: Mar 2016

Hi, I'm not even sure which board to post this on...  You all seem so helpful in your responses, I'm just starting out.  Biopsy results indicate cancerous mass in uterus, pelvic sono results were initially reported to me by radiologist as possible fibroid or polyp at the end of the vaginal canal.  CT scan is next.  I'm pretty scared right now and trying to learn as much as I can very quickly.  I'm really praying this hasn't spread too badly yet and I have so many questions.  Is this the right board to post to?  

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

and so sorry we have to meet this way,  Glad you found us.  This is a good place for information and encouragement.  You may want to look back through some of the posts that are already here.  Ask all the questions that you want.  Someone will,have an answer for you.  The ladies here are great and we are glad to have you as part of this rather select group.  Right now, take baby steps, take someone with you to appointments, and know that you will be stronger than you ever thought you could be

 Hugs and Prayers, Lou Ann

AnnNYC
Posts: 27
Joined: Mar 2016

I'm poring over every post now.  They are overwhelming and helpful, scary and reassuring all at the same time.  I'm so curious how people started out with their diagnosis.  I had abnormal bleeding start in November, by January it was really noticeable.  The last few months, constant bleeding and pain.  I wonder how much time I lost.  Kicking myself for waiting these months.  I have pain in my whole abdomen but I'm trying to tell myself that's not indicative of the extent necessarily.  Is chemo/radiation always prescribed after the hysterectomy? 

Anonymous user (not verified)

Hi, I too thought if only I had went to my doctor immediately, my slight bleeding started in April during an extremely stressful time at work, it kind of went away, but never actually did, by the time I decided to do something it was September and I was eventually diagnosed stage 111c, grade 3.  However, I chatted with another lady that went immediately to her doctor at the first sign of spotting, and was still 111c grade 3.  Even my doctor said with my cancer, by the time I had symptoms, it had probably spread to the lymph node.  If you have pain as a symptom, it might actually be a better grade of cancer.  My doctor remarked that my lack of pain, and lack of enlarged uterus was signs of serous (which I have).  If you have a lower grade, and a lower stage, usually surgery is all that is necessary, however, if they determine after surgery that it''s a high grade like serous or clear cell, or that the stage is higher (that it has spread beyond the uterous), then chemo is recommended, many times radiation although my doctor hasn't indicated that I will have radiation for my stage 3 grade 3.  When I first joined this forum, I had to step away for a few days to digest what was actually reality.  Yes, it was very overwhelming, and when I came back, I was met with caring, helpful, honest posts of how I will be able to get through this and how supportive everyone is.  Hugs Nancy

AnnNYC
Posts: 27
Joined: Mar 2016

I'm going to latch on to the part where you said the pain may actually be a good sign.  Now I'm happy to be in discomfort.  It's definitely a lot to process and learn about, and I just wish I knew more about what's happening inside me.  

Of course, this kind of news never comes at a good time.  I'm feeling very alone right now as my husband is out of town on business so I'm trying to process everything while acting totally normal in front of my kids this afternoon/evening.  I was still at the imaging center today when my ob/gyn called with last week's biopsy results.  I could barely finish my mammo and breast sono after that call.  I will have blood taken tomorrrow, CT scan on Friday, then meet with oncologist Monday.  Even though it seems like an eternity to wait for answers, after seeing many posts on here about how long other women have had to wait, I guess that things are moving along quickly.

One of many questions I have:  how will the oncologist know how much she needs to remove?  Is that determined by CT scan?  Is it always a total hysterectomy?  Ovaries, lymph nodes.. more?

I haven't been given any sense of grade or stage yet.  I'm not even positive of the location since ob said one thing and radiologist seemingly indicated something/somewhere else.  What a mess...   Thanks for any replies and information.  I continue to read through all your previous posts and am learning a lot.  I'm sorry you've all had to go through this.  

Red Corvette
Posts: 114
Joined: Jan 2016

Ann, you're going to be fine. You're going through some of the worst times when they tell you it's a potential cancer and until when they give you a diagnosis. Everyone here including my wife has gone through what's happening to you and it's tough and nervewracking. Take it one hour at a time, then one day at a time and you'll get through this. Go out, take a walk. And, don't try and research this on the internet. You'll get freaking scary stuff that's all over the place, sometimes old info or wrong or not applicableble to you. This board and all the wonderful, strong, caring ladies here are the best place for correct info and support. Hang with us, we'll keep you safe and moving forward.

Red Corvette 

ConnieSW
Posts: 1550
Joined: Jun 2012

I don't have any other advice to add at the moment but wanted to welcome you and give you a warm hug.  I agree that this waiting period until you know what you are up against and what the treatment will be is the hardest.  You just have to get through it as best you can.  Thankfully your doc is moving you along quickly.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1768
Joined: Jun 2015

Glad you found us! The only thing I will add to the other posts is to consider a mild anti-anxiety medication while you are waiting for results.

I was never one to take medication, but was so glad I took this advice.  I used LorAzapam and it really helped. I didn't take a lot of it, only enough to calm my anxiety when it hit out of the blue... I still carry it with me but haven't taken any in months.

The waiting is the hardest part. Once you get your DX (good or bad) you will get a plan and see it through. You will discover strength that you never knew you had. And, you will find some unexpected good things along the way...

Come back with any questions and please let us know how you are doing!

Love and Hugs,

Cindi

EZLiving66's picture
EZLiving66
Posts: 1474
Joined: Oct 2015

I agree with Nancy (Don's Wife).  I had no pain at all, really no symptoms except a feeling of that something wasn't right and I also ended up with a more aggressive kind of uterine cancer like Nancy.  

Honestly, the hysterectomy was the easiest surgery I've ever had.  My reaction to chemo was the exception, not the norm and if I would have had a decent doctor, he could probably have offered me alternatives that I could have tolerated.  

We're here for you!!

Love,

Eldri

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

I'm so sorry you had to find us, but this is a wonderful place for information and caring people. Don't knock yourself with what ifs. I went with the first sign unexplained bleeding after menopause and I wasn't even bleeding much. Unfortunately mine was still lllc. The waiting is the worst, but you will get through it. Yes, I took some lorazepam, too and it's not something I usually do, but sometimes your mind just won't shut off and it helps to sleep. We are all here for you! 

BabyCoach's picture
BabyCoach
Posts: 95
Joined: Mar 2016

Ann, you are at a good place to begin your not-invited journey.  I am new as well and facing the total hysterectomy on Monday.  The WAIT is the hardest thing early on.  I wanted this surgery a month ago, but none of my very highly trained physicians seem to be concerned about 30 days!  I have learned a lot from the folks on this Discussion Board.  The best thing you can do at this point is B R E A T H E, set up the early appointments, and make a point to do some activities you enjoy.  A treatment plan isn't forthcoming until all the information is gained.  It is definitely scary, but you have many "sisters" out here and you are not alone in this battle.  

AnnNYC
Posts: 27
Joined: Mar 2016

I'm pouring over my biopsy and sono reports now and looking up every word.  These terms are all so foreign to me, I'm sure you all learned more about medicine than you ever imagined from this experience.

Diagnosis:  poorly differentiated adenocarcinoma of the endometrium (FIGO grade III) suggestive of serous adenocarcinoma

I'm starting to think this may be more serious than I had hoped... I read about UPSC from many of your posts last night.  I'm just devastated.  I alternate from being totally resolved and logical-  making arrangements to proceed and navigating the various doctors offices, etc. that I'm dealing with, and then I just crack, thinking of how badly this is going to impact my husband and small children.  I haven't told anyone in my family other than my husband yet.    Until I have the information from the CT scan and meet with the oncologist, it would just be unfair to burden them with the anxious worrying that I'm doing now.  I just pray this hasn't spread too badly.  I was really wishing I would wake up this morning and it would have all just been a bad dream.  Thanks for everyone's support, I'm so grateful to have a place to turn right now.

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

Hi Ann, so sorry for your diagnosis and the worry that it is causing you. Is your oncologist a gynecological-oncologist? Those are the specialists for this type of cancer and will know how best to treat whatever it is they find.

I know that it's easy for me to say but please try not to read too much into what you find online. Stats about cancer survical are very easy to misunderstand and may be based on very old treatments or outdated understandings on how to treat this disease.

You will probably be very surprised at how your family rises up to help you get through this. They will follow your lead so be strong and know that this fight is a marathon, not a sprint. You can do this! We will be here to help you along the way.

Wishing you strength and good health,
Kim

Surgery: TAH & BSO, 14 lymph nodes excised, 10.5 cm - Sept 2015; 47 years old
Dx: Uterine carcinosarcoma (MMMT) Stage 1b, Grade 3 - Sept 2015
Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - Dec 2015 - June 2016
Radiation - external, 28 treatments, completed Mar 2016

 

 

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

I went through this, too, Ann, thinking that "This HAS to be a dream," and of course, it wasn't.  I also waited until I had the results of the CT scan and the beginnings of a plan before I shared the diagnosis with anyone but my BF and closest friend.  I not only wanted to spare them the worry, but I knew that they would have questions that I wouldn't have answers to until after the scan.  

I'm glad that you found this board early on in your journey.  I don't know what I would have done without it.  The ladies here are knowledgeable and kind, and the information I got from this board has helped me through surgery, chemo and radiation.  You'll make it, too.  

Chris

Anonymous user (not verified)

Mine said similar, poorly differentiated adenocarcinoma, cannot rule out higher grade serous or clear cell.  When I asked my doctor what that meant before I had surgery, he said this was common wording when the pathology techs couldn't come up with a definite diagnosis.  Even when I had surgery, my doctor said my uterous wasn't enlarged, nor did he see any cancer or anything suspiceous, even said the initial path report done immediately after surgery said not serous, maybe clear cell.  It wasn't until it was all said and done, did they report 75% endometriod, 25% serous.  So they are treating me as UPSC.  So it won't be until the final path report after surgery when you will get the official diagnosis.  You have every chance yet that it's not serous, that it is the more common, so don't dwell on the what ifs yet.  Hugs Nancy

Gardena
Posts: 102
Joined: Jan 2016

It is very normal to have the mood swings from logical thinking to "cracking". The emotions you're experiencing are akin to mourning. It makes sense, we lose our our (false) sense of control, we feel scared alone surrounded by love of family and friends... then we start to process this is a marathon, not a sprint, as Kim mentioned. You will be stronger than you ever thought possible. I am in the 3rd phase of my frontline treatment (hysterectomy, 6 infusions of carbo/taxol), now 25 days of emrt external beam radiation coupled w low dose cisplatin (6 infusions during the 5 weeks of radiation to sensitise any remaining microscopic cancer cells).

My treatment plan is specific to my situation, as will be yours. The beginning of this journey (to me) was the scariest and most emotional - once my hysterectomy was completed and a pathology report generated my treatment plan was formulated and it was off to the races... I started chemo three weeks after my hysterectomy. Remember, once your doctors give you a treatment plan you can question / ask about everything recommended. A good onco team will be happy you're engaged in the process. You will be your best advocate.

((Hugs)) to you. 

ncg007
Posts: 136
Joined: Nov 2015

Ann...Sorry you had to join the group, we are all here for you.  Take a breath and take a step back.  As someone else noted, you won't have your full diagnosis until your pathology report after surgery.  There are many different uterine cancer diagnoses, so please don't get yourself worked up on what your reading.   Once you have your pathology reports your Onc Gyn and possibly Radiologist will make a treatment plan, the next step I advise is for you to then get a second opinion.  As I'm sure you've read on the board there are many treatment approaches.  And yes it does seem like a really bad dream, but you will get through it.  Wishing you all the best.

Nancy

AnnNYC
Posts: 27
Joined: Mar 2016

Once again, I'm moved by how wonderful you all are to take the time to write words of support to a total stranger.  Thank you.

I had my blood work done today to clear the way for my CT tomorrow morning.  This evening, the gyn-oncologist's office called to say that the Dr. had reviewed my file further and decided she would like me to get a PET-CT tomorrow instead.  I'm guessing this means they need to check if/how much it has spread to other areas.  Is that correct?  I'm curious why the last minute change...

What type of imaging did most of you have to diagnose?  It seems the PET/CT combo is the most helpful to find all areas of concern?

Many of you mentioned that they really won't know the severity until the post-surgery path so I'm just wondering - how do they know how much to remove?  For those of you who had lymph nodes, etc. removed, did they have to do a second procedure for that?  Or was that determined by the scans you did?

Thanks again for your information and sharing your stories.  My husband returns from his trip tonight so I'm looking forward to the added support.  I've definitely been hugging my kids a little tighter these last few days.  

 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Hi Ann

Usually, I think, they pretty much will take everything in surgery (uterus, Fallopian tubes, ovaries, cervix). I had a CT scan before surgery and my pelvic and aortic nodes looked suspicious and indeed were malignant. They took those during the surgery. I ended up with both DaVinci surgery in which the took the nodes but my surgeon did have to do an incision to deal with my uterus and apparently the membrane between the uterus and the bladder which also showed cancer. So I ended up with abdominal surgery. But I'm 13 days out from the surgery and actually feel great. End of April I'll embark on my chemo journey. 

Good luck to you. This group has been a Godsend for me. 

AnnNYC
Posts: 27
Joined: Mar 2016

Hi, I think I saw you mentioned in another post that you had a c-section before, is that right?  Wondering how it compared?  I've had 2 c-sections and my appendix removed so I've been opened up a few times.  I'm sure I can do it again if it's similar.

Also curious why a bit of time for you between the surgery and the chemo.  Do they need to wait for your body to heal/recover first?

 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Yes, I had a c-section 24 years ago.  My surgeon was able to get the lymph nodes through the DaVinci surgery which is fortunate since if not, that would have involved a lateral incision. But she still needed to do an incision which yes, was exactly like my c-section to remove enlarged uterus since it could not be removed vaginally and I'm speculating because of the bladder issue as well as adhesions from c-section. First week was a little rough but I'm 2 weeks out and doing great without any pain killers and planning to go to Italy on April 12. 

My doc would have started chemo next week, but since I had this trip planned and she said it would not make a difference to wait a few weeks to start the chemo, I decided to take the trip with my family. Who knows if or when I'll get the opportunity again. 

Good luck to you, Ann!

AnnNYC
Posts: 27
Joined: Mar 2016

That's wonderful that you're going to take your trip!  I'm sure it is so well deserved and probably appreciated now more than ever before.  I had a trip planned to take my children to Disney at the end of April.  We'll see what ends up happening.  I'm glad to hear how quickly you are bouncing back!

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

I think they take everything.  I had a traditional radical hysterictomy my Gyn-Onc / surgeon wanted to be able to feel around while he was looking for cancer cells.  Before sugery I had a pap and a vacuum thingy which showed cancer cells in both the uterus and the,cervix.  My GP referred me to an oncologist who ordered a CT scan and a D&C. They were trying to decide if it was cervical or uterine.  He then referred me to my Gyn-Onc.  He did the surgery.  He did not have,to,remove any lymph nodes, but the pelvic wash came back positive.  He also found some cancer cells behind my uterus.  The path report came back in about 2 weeks as papillary serous endometrial andocarcinoma stage 4 high grade.

i had the sandwich treatment and 8 months later everyone thought I was NED only to have it matasisized 7 months later. I,had a PETscan at that time because the CT scan showed,suspicous area. PET scans are quite expensive and some insurance companies do not always approve them.

Hugs and prayers that everything will turn out for the best for you.  Remember. The strength you need will be there when you need it.  Lou Ann

AnnNYC
Posts: 27
Joined: Mar 2016

I love that saying.  The strength you need will be there when you need it.  I've always prided myself on being very mentally strong and resolved to just fix a problem once I'm presented with it.  Think it through logically, don't get emotional, just make a plan of action and attack the problem.  I just need to hold tight to that approach now.  

When you found out that it had matastisized 7 months later, did you repeat the process again - removal then treatment?  Where are you now in the process?  If you don't mind my asking.

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

No surgery or radiation at that time. My Gyn-Onc suggested,radiation,on the,tumor,in my neck but the radiologistthoughmchemo,was best,because it,had,spread,to a spot,in,my,neck,two on,my,liver and,several,in my abdoman near,my,spine. He wanted chemo because it,is,systemic and.would.work on all of the tumors.  We changed cancer centers not because of the Doctor but because of the infusion place was so terribly crowded an they didn't want my husband to sit with me.  Love my doctor at the cancer center we go to know. They are all wonderful.  I went back to Taxol/Carbo for 5 rounds and had to stop to let my blood recover and I was back down to NED for 4 more months.  Tried Taxol Carbo again. Had a reaction to the Carbo. Tried Doxil for 7 rounds. Tumor grew intwined itself in my intestines. Open bowel reaction and we tried a desentizinng program for the Carbo. That worked for 7 months when I had a reaction to it.  Now I am on something call Topotecan.  This may sound long and Complicated, but. My life is really pretty goo.  I have many more good days than bad.  I am blessed with wonderful family, friend, and Doctors.  I have many things that I am looking forward to including a new great grand baby and a trip to the ocean.  I am not letting the illness get in the way of my life. 

Hugs and prayer, Lou Ann

AnnNYC
Posts: 27
Joined: Mar 2016

You are amazing! Thanks for sharing your story.  

 

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