CSN Login
Members Online: 9

You are here

Adenocarcinoma Uterine treatment

DSNYC's picture
DSNYC
Posts: 20
Joined: Sep 2016

I have learned so much form everyone here, so thank you all in advanced! Kim especially you! ....thank you for your detailed experience and so happy to hear you are NED! I do have a few more questions that you may or may not chose to answer, since you have been through this and I am on the fence about whether to do the radiation and chemo I was told to do at my post op. And this is to everyone else as well, please advise as I am so confused as to what to do. Ive read so many people beat this through radical diet change and no chemo.

I had a full hysterceomy 3 weeks ago, I dont think mine was MMMT, but maybe? (uterine, stage 1, i dont know if it was A or B, i cant find it in the pathology report, grade 2). All low grade. My ovaries and cervix turned out to be fine. However I did have 4 lymph nodes removed, 3 were positive for metastic adenocarcinoma. I do have a DNA mismatch repair proteins: I dont have MLH1 and PMS2 needed to correct any mistakes my cells should make as they divide and grow. I did have a full CT, and everything came back unremarkable after the surgery.

Has anyone had this sort of sitaution? Im scared to do the raditaion and chemo especially, I know the micro cancer cells got out but since im "unremarkeable" right now, cant I control this strict diet and avoid the chemo? Any and all advise through your own experiences or loved ones is greatly appreciated!! Please!!

Diana

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

Advise is so hard to give, because we are each unique.  What one person does, may not be right for the next, and everyone has to find a treatment or plan that they are comfortable with. I have Serous Papillary Endometrial andocarcinoma.  I started out with a radical hysterictomy the sandwich treatment (three rounds of chemo, 28 external radiation, two internal radiation, and 3 more chemo rounds.  I started out as stage 2 aggressive.  My pelvic was was positive , but no lymph node involvement.  I went this route because I wanted to give myself the best chance that I could.  My first  CT scan at 3 months was unremarkable.  3 months later it had Metastizised through the lymphatic system to my neck, liver and spots in my abdoman.  My radiology oncologist said they must have missed one microscopic cell.

I have been fighting this monster for 4 Years now and the one thing I can tell you is that I have many more good days than bad.  I was terrified of both the radiation and chemo, but both were very doable.  Not that I enjoyed any of the treatments I am glad that I went ahead with agressive treatment.  I have much to be thankful for. Including 4 beautiful great grand babies that I get to love.

Hugs and prayers, Lou Ann

DSNYC's picture
DSNYC
Posts: 20
Joined: Sep 2016

all good to know and hear. Im so glad you're better. Nothing like a bunch of grand kids, sorry great grand kids, wow! to put a msile on your face eveyday im sure :)

Thank you Lou Ann

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

i am afraid you,may have missunderstood me. I am not exactly better. The one microscopic cell that slipped by the frontline,treatment has caused metistatic  cancer  that has spread to numerous places in my body.  When it was discovered at my 2nd CT scan after treatment , I was told I would be on chemo for the rest of my life.  Except for one other short time when a CT scan also showed nothing.  As soon as treatment is stopped for  a short while those darn cancer cells start growing again.  It Has been very agressive.  I am not ready to give up the fight yet though. And I still say that I have had many more good days than bad.  I have had 36 rounds of chemo and am now on an experimental treatment of immunotherapy.  We won't know if it is working for awhile, but I do feel better and havemore enery than I have had for quite a while..  It hasn't been easy, but, it was doable and I am thankful for that.  Treatment has given me a chance for a longer live and enjoy all the wonders that are out there.

i know this is a hard decision, but you will come up with a plan that you will Comfortable with.

Hugs and prayers, Lou Ann

SettledSue's picture
SettledSue
Posts: 55
Joined: May 2012

Since you already have cancer in three lymph nodes it is likely your cancer will continue to spread. I would do the treatments your doctor suggests. Maybe get a second opinion first. Chemo and radiation can be tough but I think you have a much better shot at living longer if you get treatment. Sue

DSNYC's picture
DSNYC
Posts: 20
Joined: Sep 2016

Thank you Sue. Im meeting with the radiation and chemo specialists in the next 2 weeks and I will definitely pay attention to what they tell me.

janaes
Posts: 666
Joined: May 2016

As i read your post I though of myself back when i was trying to make a decision.  I really think deciding to do chemo was one of the hardest if not the hardest desisions i hava had to make.  I was diagnosed with MMT unterine cancer stage 2 grade 3.  Although after surgery the diagnosis was better than they thought at the time of biopsy, i still decided on chemo.  I litterally had my apointment for chemo set up and had to call my family and tell them i think i am going to do this and am planning on it, but if i change my mind dont be surprised.  Before that it took me time to read my pathology report.  At first i only had a part of it and so i got confused when the doctors would tell me to do chemo.  I couldnt understand why.  It wasnt until i knew i had at least some of MMT cancer in my cancer which was writen on my pathology report, that i could even consider chemo. It really is a personal desiosion  I am currently doing chemo and as i look back i am greatful i took the time i neededto decide,

DSNYC's picture
DSNYC
Posts: 20
Joined: Sep 2016

I will not jump into any decisions either. I have a little time to decide. Its all so new and so much to understand and accept. I hope your chemo goes well and helps in abundance! Thank you 

janaes
Posts: 666
Joined: May 2016

DSNYC,  Your welcome.  Im glad you have time to decide. I will be thinking about you as you make your decision. Janae

DSNYC's picture
DSNYC
Posts: 20
Joined: Sep 2016

Has anyone with a stage 1A or B grade 2 opted out for chemo...doing a radical diet change, supplements, etc to control it and is having success?

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

As Lou Ann said, cancer is such an individual disease that treatments that worked for one may not work for another and vice versa.  

Reading what you've written, it appears that your cancer was re-staged after surgery if cancer was found in your lymph nodes.  That would make it Stage IIIc.  Be aware that the CT scan will not show microscopic cancer cells.  I had a CT scan before my hysterectomy that showed no tumors other than the one in my uterus; however 4 of 22 lymph nodes sampled during surgery had cancer cells in them.  Thus, it's possible that you have other lymph nodes that have cancer cells in them as well.  I'm not telling you this to scare you...  it's just a distinct possibility.

I did undergo 6 rounds of carboplatin/taxol.  I had a relatively easy time of it.  Was it something I wanted to do?  Well, I was scared to do it and scared not to. I had a scan 5 months after finishing chemo and I was NED then and I feel good now.  But the big thing is to keep it from recurring, and all of us live with that possibility, whether we do chemo and radiation or not.  Such is the nature of the beast. 

One other thing you will find is that doctors will disagree on the best course of action.  While everybody was pretty much in agreement about the chemo in my case, when it came to radiation, the doctors were all over the place as far as whether I should have it and what kind.  I had doctors that recommended no radiation and doctors that recommended both external and internal and everything in between.  After much research and soul-searching, I opted for brachytherapy instead of extended field external radiation.  

As far as controlling the cancer with something other than chemo or radiation, it has been done. In my research, most who have gone that route make other changes in their lifestyle besides just diet.  If this approach interests you, I would strongly suggest that you find either an integrative oncologist or perhaps a board-certified naturopathic oncologist to work with you and with your other oncologists, if they are open to it.  In any case, you may want to get a second or even third opinion.

In the final analysis, after taking all of the recommendations and research into consideration, you will make a decision on which treatment feels right for you.  I would suggest that you make this decision not based on fear, but hope.

Peace and strength,

Chris

 

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

There are a couple of women with early stages who opted out of chemo and have gone alternate routes.  They do not post here very often anymore, but you can send them a private message and see if they respond.  Charissa and cosaltlife are two of the most recent members who have done so.  If you search earlier posts, you may find some others... california_artist comes to mind.

Virgil90012's picture
Virgil90012
Posts: 27
Joined: Feb 2015

Hello Diana,

As it has been mentioned by the other posters, the decision is all yours.  If you are not sure, I would suggest getting a 2nd opinion after you talk with your oncologist.  I was diagnosed with Endometrial Adenocarcinoma Stage 1A Grade 2 in October 2014.   I had a total abdominal hysterectomy and bilateral salpingo-oophorectomy (removal of both ovaries) with 18 lymph nodes removed along with peritoneal washing.  Other than finding the tumor in the uterus, there were no cancer cells found in any of the 18 lymph nodes, other organs, or the washing.  I was very lucky.  My Gyno-Oncologist said I didn't need chemo or radiation since there was no evidence that cancer cells had spread.  Of course, I wish that my cancer was not grade 2 but according to my doctor, it is still considered low grade.   My case is different from yours because the pathologist did not find cancer cells in any of the sampled lymph nodes.  I think if they had found positive lymph nodes, my doctor would have had me go through chemotherapy.  It has almost been two years for me and I have had three month check-ups with pelvic examinations and CA125 blood tests.  So far, knock on wood, I am still NED.  I don't know if knowing my story helps but I hope it does give you another viewpoint.  

All the best to you,

Cathy

brissance's picture
brissance
Posts: 192
Joined: May 2016

It is scary but there are no definitive answers.  You can find support for almost any decision.  And no matter if the diagnosis is identical the actual situation will be different.  I have found that I tend to make decisions based on the worse case scenario.  If I go with choice A, can I accept the worse case scenario?  In the case of chemo, if I take chemo can I take worse case?  That would be it doesn't work and I have to get another treatment or it causes other issues.  But if I go with no chemo, could I accept the growing and spreading of the disease?  Once I feel comfortable seeing the options and their outcomes it is easier for me.  I went into this thinking I was going to get the most aggressive treatment I could get.  I would rather lose after having fought a strong battle than to have just let the disease win.  That is the way I have looked at it.  Works for me.  

God bless you as your find your way in this   It is tough but you are doing the right thing in questioning and finding your own path.  

Patty

EZLiving66's picture
EZLiving66
Posts: 1248
Joined: Oct 2015

Welcome, Diana!  I have UPSC Stage II, Grade 3.  My oncologists recommended six chemos (Taxotere and Carboplatin) with no radiation.  I made it through three chemos and just about died.  My GP and I made the decision to stop - as she put it, the oncologist wanted to make sure he killed all the cancer, but he was killing ME.  I'm hoping those three chemos were enough to kill any random microscopic cancer cells, but it they weren't, I'll deal with it then.  I will not have any more chemo but radiation is still on the table.

Let us know what you decide.  No way is THE right way - it's a crap shoot on what works and what doesn't.  I'm following LouAnn who is being treated with Keytruda (hope I got that right, LouAnn?).  To me, this looks like the treatment of the future.

Love,

Eldri

DSNYC's picture
DSNYC
Posts: 20
Joined: Sep 2016

Hi Eldri

I havent heard of Keytruda, I will research it today. I might start with the radition with ight dose of chemo at the same time and then forgoe the 3 or 4 rounds theyre recommeding after the radiation. I dont know yet. I have about 3 weeks to decide. Thank you for this info, I feel like we have to tell our doctors that sometimes what they want us to do isnt what works for us since the same treament cannot work for each unique individual. We have to take some control in our treatment. Thank you again!

Diana

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

i am the one on Keytruda.  It is an immunotherapy drug. It has not been opproved for this kind of cancer yet, so I am getting it as experimental use.  I understand that you have to be platinum resistant, failed traditional chemo, and a couple of other factors before you are a good candidate for it.  Jimmy Carter was on it but he had the type of cancer it was approved for, metistatic melonoma.  I have no side effects and feel better then I have for a long time, but we won't know if it is working for a while.  My doctor is very encouraged though.

Good luck as you start this journey.  It is hard to,know what is best.  Different doctors have different ideas for sure, and what is right for one person may not be hat the next person needs.

Hugs and prayers, Lou Ann

MAbound
Posts: 646
Joined: Jun 2016

Like you, I have adenocarcinoma and I'm being very cautious about what treatment path to follow. I'm done with chemo now, but struggling with whether it pays to proceed with radiation or not. I'm stage 3a, grade 3 with a positive pelvic lymph node on each side, and cancer in my right ovary and fallopian tubes, although the left fallopian tube was probably contaminated during examination. My omentum and  para-aortic valves were negative, but the pelvic wash was suspicious but not conclusive.

I went ahead with 6 cycles of chemo because it treats the cancer systemically. Radiation only treats what its aimed at. As another member said she was told when she got a second opinion, "its not a local recurrance that's going to kill you, its when the cancer metastasizes elsewhere that its harder to control. If it were me....I'd focus on treating the cancer systemically via chemo and then consider radiation." 

That's kind of the route I'm following. I just finished 6 rounds of chemo every three weeks on Aug. 31 and I'm finally feeling better this week while I'm going through all of the followup testing and pre-admission work for surgery next week to repeat the pelvic wash. How that goes will determine whether or not I proceed with radiation therapy. If I don't have radiation, I'm on Metformin now and will be starting hormone therapy. I can re-visit radiation therapy down the road if a local recurrance is found in the future. If I go ahead with having external radiation, it will be for peace of mind that I did all that I could to fight this and to increase my odds of being and remaining NED for the foreseeable future. What worries me is all of the negative after effects it would put me at greater risk of as time goes by. I'm greedy and want quality of life as well as living and thus my dilema with whether or not to proceed.

Which path to follow is a tough decision to make. Hopefully you have confidence in your oncologist and have  found enough information here to help you feel safe with whatever you decide to do.  You've made a good start on learning everything you never wanted to know about what's going on inside you. Good luck and keep on learning....it will seem like there's never an end to the questions you'll think of!

 

 

DSNYC's picture
DSNYC
Posts: 20
Joined: Sep 2016

Arm yourself with information, yes! And then try to make the best decision without kicking yourself later. It makes sense what you said...Im meeting with the chemo specialist on Monday, but my thought with doing the radiation first wth th low doses of chemo is ...I was told I would less rounds of chemo after...but thats one person, I will find out for sure next Monday. I will ask him what you mention, because if thats the case, then why even bother with the radiation at this point. My issue is the metastazing, since my lymph nodes were positive...so why not attack it systimatically like you said? 

I also read that there are cancer cells and cancer stem cells. It is these cancer stem cells that metastasize not the cancer cells themselves...and radiation and chemo does not get rid of cancer stem cells on cancer cells...so if your issue or concern is with matasteses in all lymph nodes, as in our cases, theoretically, these treatments are not beneficial for our cancer stem cells we have in our tissue. There is so much!!! What to trust and what to hope on??

christine8822
Posts: 36
Joined: Mar 2016

Hello DSNYC: if your cancer has shown up in lymph nodes, you have jumped to stage IIIC. That puts you in the high risk group. Did doctors tell you if you have the type 1 endometrioid or type 2, rarer serous or clear cell? Either way, I am not trying to scare you, but you are fighting for your life here, and doctors now normally do courses of both chemo and radiation for the best result. Yes, every person is different, but I would go to the biggest, best cancer center you can find for a second opinion and then compare what their recommendation is to your first doctor. Don't wait too long. First line treatment for endometrioid type 1 stage IIICis usually Paclitaxel/Carboplatin , plus radiation. Good luck. Everyone on this board is rooting for you.

Fayard's picture
Fayard
Posts: 405
Joined: May 2011

Hola,

I am not clear why your cancer was stage 1, if some lymph nodes were involved. I had Adenocarcinoma, grade 3 (clear cell). I am assuming you do not have clear cell, since you mentioned grade 2. I had 18 treatments of chemo and no radiation. That is what my gyno/oncologist prescribed. As many here, I have made radical changes in my life including dieting. However, uterine cancers must be attacked aggressively as suggested by some. This is just my opinion based on my experience. It is hard to give people advice, since this is about your personal well being. Big hugs to you!

DSNYC's picture
DSNYC
Posts: 20
Joined: Sep 2016

It is now stage 3 because of the positive lymph nodes, (had 3 out of 4 positive) I have had multiple post ops and appt with the radiation specialsit since I wrote my post and now have updated status. The tumor in my uterus was stage one since it had invaded my wall 8mm of the 21mm...so less than 50% making it a stage 1 grade 2. I have radically changed my diet, increased my supplement intake substancially...to rev up my immunue system to what seems like the inevitable radiation and chemo treatments that I will start last week of October.

I have another appt on Monday and will ask if I have clear cell or not, I didnt even know about that. I dont know why they dont tell us everything when going over our pathology report after surgery. We may not understand what it all means in that moment but thats how learning works! you have to be told about it first...anyhoozy, yes, I am now considered stage 3 because of the positive lymph nodes and I am oming to terms that I will have to undergo chemo and radiation as somewhat of an insurance policy since recurrance is high in my situation. Thank you for taking the time to respond. Each one helps so much. SO thank you all!!!

ConnieSW's picture
ConnieSW
Posts: 1335
Joined: Jun 2012

Ask for a copy of your pathology report.  Lots of good info there.

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

Hi Diana, sorry for the delayed response. I've been traveling for work and haven't had access to a computer for a few days... I'm glad to hear that you have an appointment tomorrow. Waiting for information is the worst! You need to have a very clear understanding of your diagnosis in order to make an educated decision on your treatment. 

The one thing I learned from my experience is that second opinions are your friend. Do not be afraid to take your records to a highly-respected cancer center and get their opinion. Sometimes you need new pair of eyes in order to see clearly. They are the experts. This is their life's work. Let them guide you. You should not feel alone in making these important decisions.

Let us know how it goes tomorrow and what you decide. We will support you in whatever you decide. Kim

 

rcdeman
Posts: 251
Joined: Aug 2016

Hi DSNYC,

My mom is in a similar situation as you right now. She was diagnosed with UPSC Stage IIIC, Grade 3 post-op after pathology results. Although only 33% of the myometrium was penetrated, the cancer was found in one of the 19 pelvic lymph nodes they removed. Her peritoneal wash came out positive. Because they did not remove the omentum and any of her para-aortic lymph nodes, she is actually incompletely staged. They had initially though it was EC Stage IA, Grade 1-2 during hysterectomy so did not go ahead and remove more.

We are still deciding what treatment options will be best for her type of cancer. I think the typical one for UPSC (and for Adenocarcinoma) is usually 6 rounds of carboplatin/taxol followed by external radiation and/or 3 rounds of vaginal brachytherapy.

We will be meeting her chemo doctor and radiation oncologist on the same day on Friday this week, and then will be doing a PET/CT scan the following week to determine what the next step should be. Among the possibilities are a second surgical procedure if metastasis has occured, chemo, followed by radiation. We will have to see.

This is the time to consider your options. I know some people who have gone for the sandwich chemo treatment or a dose dense treatment. Like some of the others, we've decided we want to fight this cancer with everything we've got and hae decided on one of the chemo options.

Prayers to you!
Rebecca

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Radiation works by "sterilizing" lymph nodes, not just tumors and surrounding tissue, so it is a way of reducing the chance of metastasis as well as local recurrence.

In a discussion of this kind, and since each person has to make her own decision based on what she thinks is best for her, I can only talk about what happened to me. Before being diagnosed with cancer, I assumed that if I ever had it I would forgo elaborate treatments. After I was diagnosed, several things changed my mind. One was that I learned that there are people who beat the odds and survive with aggressive treatment--to five years, which once sounded like too little time to make a difference, but now sounds like it would be a great achievement. I learned that there are many kinds of treatment available now if the first-line treatments fail, and many ways that people are living with cancer. Another thing that influenced my choices was reading about what it is like to die of untreated cancer: I realized that there is not really a choice between undergoing difficult treatments and dying a "cleaner," more "natural" death, as many people seem to think. The reality of our situation is that there is going to be pain either way. I also realized that even though I don't have children, I would leave behind people who love me and whose lives would be altered if I weren't around.

When I was first diagnosed, I had a very strong sense of being drawn into the jaws of a giant medical machine of doctors, tests, procedures, etc., and I hated the feeling of helplessness that went along with that. I guess I've dealt with that by learning as much as I can about my disease and the available treatments and asking questions. To some extent, I've accepted that this is my reality now. But I have also learned much about myself and what I can do. I've learned enough about how my doctors are making their decisions to understand that for the most part they are drawing on the best available research and evidence, and that they're in constant conversation with each other--they're not making rash choices on their own.

Wishing you peace and strength as you navigate this difficult road.

 

ConnieSW's picture
ConnieSW
Posts: 1335
Joined: Jun 2012

Wish we could gather up some of the exceptional posts here and put them in a little cyber orientation package for new folks.  Wouldn't that be neat?

Soup52's picture
Soup52
Posts: 850
Joined: Jan 2016

Many of these discussions about radiation make me feel ignorant or unusually trusting. Yes, I do have trust in my gynecologist and I really didn't feel I had time to question his motives of giving me radiation after surgery and then having the 6 rounds of chemo after. All I can say is I am clear right now from my clear cell stage 111C. I know it has a good chance of coming back, but I just wanted to do everything I could to tackle it. I have 2 grown daughters and no grandchildren yet and a wonderful husband. I think we have to remember that every case is different. Yes, radiation wasn't a picnic and I do at times have a lot of stomach issues from constipation, but most of the time I feel pretty good and enjoy life.

giggs100's picture
giggs100
Posts: 91
Joined: Oct 2015

About the exceptional post and packaging them for newbies. Heck package them for us too so we can review them every once in a while.  Really really NEAT idea.  And Soup I couldn't have said it better then what your last sentence was "but most of the time I feel pretty good and enjoy life".   Great thing to remember and remind each and everyone of us each day.

Hugs,

Jerri

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

I appreciate this board so much, but the format is very clunky. The search function doesn't seem reliable, and as far as I can tell, you can't even search for all of your own posts. I also wish there were a Like button!

Subscribe to Comments for "Adenocarcinoma Uterine treatment"