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The P word

jumatim
Posts: 1
Joined: Aug 2014

Hi everyone, I've been reading your posts for a few weeks. You're such a lovely and supportive group that I decided to post a message. Ten months ago I collapsed at home after a massive blood loss in the shower. I was taken to hospital for emergency surgery. In my uterus they found a large tumor, 24x16x14cm. I was given a hysterectomy and diagnosed with stage IVB endometrial cancer, grade 1. The cancer had spread extensively through my peritoneum, and while the surgeon removed as much as possible, couldn't remove it all. After the surgery, I was put on a progestin, Provera, and am still on it. After reading your posts, I'm now wondering why the oncologist didn't  treated my cancer more aggressively in the beginning with chemotherapy. I remember him saying after I was first diagnosed that he didn't want to put me through the trauma of whole abdominal radiation therapy. I've read a lot of research articles about EC and, overall, find them depressing. I'm starting to think he doesn't hold out much hope for me. I'm scared to mention the 'P' word (palliative) to him. I'd appreciate any thoughts or opinions. I feel like I'm living a nightmare. 

Julie 

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

I am so sorry that you have to join us.  I am sorry for you diagnosis, too.  Do you know if the cancer has progressed since you have been on the Provera?  Was chemo ever offered as an option.  What kind of follow up have had?  If you are not convinced your doctor is doing everything for you, I would get a second opinion.  Do you have a gyn/onocologist?  If not I would suggest you go to one.  They are more knowledgeable about treating uterine cancer.

We ladies can all relate to the " nightmare" you are living.  I am sure some others will give you their thoughts.  In peace and caring.

HellieC's picture
HellieC
Posts: 524
Joined: Nov 2010

Firstly, I'm so sorry to hear what you're going through.  Your original hospital admission and surgery must have been pretty scarey.  However, you have found a very supportive group of ladies here.

I would echo everying Ro says.  Without knowing more about your personal situation (other health issues etc) it is difficult to comment on what treatments might be appropriate.  But it does sound as if a second opinion might be a good option, if only to confirm that the treatment you are currently receiving is the best suited to your situaton.  Sometimes there is no "black and white" treatment answer to our condition but to get another view on it certainly can't do any harm.

In the meantime, I hope the progesterone continues to keep things at bay.  I have been on hormone therapy for a couple of years and I am living a good quality of life.  Progesterone didn't help me, but Letrozole worked and I am now on Tamoxifen, waiting to see what effect it has. So if hormone therapy is deemed to be the best option for you, there are various types to try.

Kindest wishes
Helen

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Julie,

I am sorry that you had to find us here but I think you've come to the right place.  I agree with the sage advice you've received from both Ro and Helen.  I received a second and even a third opinion from gynecologic oncologists.   It felt like a nightmare to me, too, when I was diagnosed with UPSC, Stage 3A, a Grade 3 or aggressive cancer.  That was 10 months ago and I am dealing with it considerably better now.  I hope this will be true for you, also, as time goes by. 

Take good care of yourself,

Cathy

Double Whammy's picture
Double Whammy
Posts: 2831
Joined: Jun 2010

Yep, I'd get one just to feel you're on the right course of treatment.  I've learned a couple of things, maybe they're anectodal, but I remember them.  Altho my cancer was early stage, I was told the following:  Grade 1 is lazy and IF it should metastasize (yours already did) it will take a while to be detected (yours has been) and we'll treat it IF that happens.  Grade 1 typically responds well to treatment.  You've having treatment , just not chemo.  That may be a good thing.  There is a lot more information available to our docs than was available even 5 years ago about the efficacy of many drugs.    How is it responding?  Where is it?  Pelvic radiation will only effect the area they radiate, so if, for instance, it's in your lungs, it won't help there.  I hope you're being followed often to access response.

So sorry about your diagnosis at such a late stage.  OMG what a huge tumor!  Was this bleeding episode your first symptom?  Yikes.   You didn't mention that you are in pain, yet you mentioned the "P" word.  Do you need pain management?   Are you being seen by a medical oncologist or gyn oncologist now?  If you're in any pain, they need to know. 

It seems that you have some important questions you'd like answers to.   If you can't ask them of your current doctor and feel satisfied with the answers, by all means seek a second opinion.  Second opinions are very common and almost expected in cancerland.  Your current doc won't be insulted at all. 

Welcome to this group.  Hope you get some feedback that will help.  We're all different - yet similar. 

 

Suzanne

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

I, like you read posts for awhile before posting.  This is the best group of ladies who share and care and tell you the truth.  My suggestion is to get your second opinion at a research hospital or a well known cancer center.  I was/am being treated at University of Iowa Hospital Cancer Center.  Depending on where you live, that might depend on where you go.  A friend who lived in CA went to Mayo for her husbands 25 lb tumor in his belly.  I've heard that Cancer Treatment Centers of America have more of a well rounded because they have nutrition, massage, chiropractic and other therapies and they often treat the cases others don't want to touch.  I know that other women have been to Sloan Kettering, a cancer center in OH and so forth.  I know the other ladies can suggest great places for second opinions.

This cancer is scary.  Positive attitudes, having fun in the midst of the "C" word is also important and enjoying each day.  I have learned this in my journey with cancer.  I was a UPSC (Uterine Papillary Serous Carcinoma) 3A  Grade 3.  A rare cancer and I am pretty young to be diagnosed with this kind.  Had a radical hysterectomy, 6 rds. of carbo/taxol chemotherapy, no radiation and am now 7 months NED (No evidence of disease).  I decided that since I had it, I was going to have fun with it rather than being depressed and scared.  I get nervous when I get "symptoms" but remind myself that God is in control of my life and He already knew what would happen, so I could just let Him take care of it.  i made decisions early on about shaving my head at the first sign of hair falling out, I told my family and friends that I was going into the hospital to get "spayed" in order to help ease their pain of me having cancer.  Then, when I walk like a little old lady because of my neuropathy, I make funny comments about that too.  Side effects suck, but there's nothing I can do, so might as well have fun with it.  Sounds like I am in denial?  No, just making my life fun to live inspite of what has happened.

I have learned to appreciate life, learned to ask for help, learned that when I need to sleep I NEED to sleep, learned who will stick by me through thick and thin and learned now that each person has a story and there is no judging because we don't walk in their shoes.

Guess I had alot more to say than I was going to.  :)    You take what you agree with and run with it and if you don't agree with it, you just dump it by the way side and you do what you need to do to help you get through this dreaded disease.  As you've seen on this board, everyone deals with this a little different.    What ever you decide, you know we will support you, we will pray for you, we will cry and laugh with you.  You have friends you've never met and on this board you are safe to say anything.

You've become a "sister" to a great bunch of ladies who understand.

Take care Julie,

Jeanette

Judemo
Posts: 107
Joined: Jun 2014

Jeanette, your words helped me today, thank you. Julie, please let us know how your doing.

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

Hello Julie:

So sorry you had to go through that.   I am not sure why you weren't offer the chemo round given the fact that you indicated that the surgeon couldn't remove it all.   Some doctors believe that since it is a GRADE 1, that it is very slow growing and would take a wait and see approach.  But in your situation given the size of your tumor and the spread through your peritoneum, I am not sure.  I reiterate what Ro, Helen, Jeanette, Cathy, Suzanne say as they are very informative.   With regard to the pelvic radiation I did not have that as the radiologist/oncologist thought that scarring from the radiation would be more of a risk to me.

If at anytime you feel uncomfortable with your treatment, seek the second opinion of a gyne/oncologist.  Also, you may have to go to a completely different location to get a better opinion.  

Everyone is different and we have all gotten different treatments.  But one thing is for sure, if it doesn't seem right, go get another opinion.  You have to be  your own advocate.  Also, watch out what you search on the internet.  A lot of the information is way outdated and downright frightening.

As others have said, have you gotten any scans (CT, PET, MRI) since your surgery?   Did they do a CA125?   

Just to let you know, I was diagnosed with GRADE 2, Stage IIIa Endometrial Adenocarcinoma.   That was back in 2005.,

Was your endometrial cancer an Adenocarcinoma or a Serous Carcinoma?  

Take a deep breath and take charge.

My best to you.

Kathy

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