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Stage 1 Grade 3 Serous Endometrial Carcinoma

brockey
Posts: 6
Joined: Jul 2018

I had a hysterectomy 3 weeks ago and on my post surgery follow up was told  by my surgeon I need chemo and radiation since mine is serous , I’m not sure what to do my sister in law is a nurse and says I should get another opinion . I have a appt tomorrow to see the oncologist about chemo.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2775
Joined: Mar 2013

brockey, sorry to hear of your diagnosis (dx).  I can't tell or not, but are you working with a gynecologic oncologist?  They specialize in 'below the belt' cancers and will best be able to help you.  

If your cancer is "serous" - it is serious.  It is aggressive and needs to be treated as such.  Many of us with Stage 1A had the chemo/radiation treatment.  

 

brockey
Posts: 6
Joined: Jul 2018

Yes , I am working with a gynecologist oncologist . Did you get a second opinion NoTineForCancer Before starting  your chemo /radiation?

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2775
Joined: Mar 2013

I did not get a second opinion.  I liked my gyn onc very much and truly felt he had my best interest in beating it.  The first day I met him he would have spent as much time as I wanted - and never made me feel like he had to rush off for someone else.  UPSC is pretty straight forward - it is nasty and the doctor (nor I) were going to play wait and see.  Everyone has to do what is best for themselves.  

Harmony09's picture
Harmony09
Posts: 79
Joined: Aug 2017

I know it can be beneficial to have a nurse in your family. My cousin is a LPN and will be a PA in a few months. I encourage you and your family to research more about serous cell cancer. It has become standard protocol to treat even stage I with chemo/rad, because of the aggressive nature of the disease. It has a tendency for distant metastasis as well. There is limited information on the web, but case studies are available. You can type it into the search box here too....and see real life, up to date cases. It might even be easier for your family member to find scholarly articles, because you need subscriptions to some publications.

Best wishes,

Stacey

Serous and clear cell Stage IV Grade 3

Armywife's picture
Armywife
Posts: 417
Joined: Feb 2018

And I'm very glad I did.  It gave me peace of mind to know that both care teams agreed on the treatment plan.  I got the second opinion after surgery and before chemo - and again after chemo to determine whether to do radiation.  

EZLiving66's picture
EZLiving66
Posts: 1428
Joined: Oct 2015

I would just because there are so many treatment options.  I also have UPSC but my oncologist/gynecologist only recommended chemo - carboplatin and Taxotere; no radiation. I was Stage II, Grade 3.

Love ,

Eldri 

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

I didn't get a second opinion as I too, felt that my gyn oncologist had my best interest in mind.  I also found out that he was one of the country's best gyn oncologist and that there was a team of doctors that go over each case every week and talk about it.  Becareful about what's on the internet especially the stats.  They are generally outdated.  You are a statistic of one.  Rest and ask questions and be determined.  These ladies are wonderful on this board.  Keep the faith.

BluebirdOne's picture
BluebirdOne
Posts: 347
Joined: Jul 2018

Hello Ladies,

I am still in shock after having an hysteroscopy last Tuesday and a preliminary path report of a high grade tumor. Going tomorrow for 1st consulatation with gyne oncologist surgeon. Scared to death. 2nd consulation at Northwestern on Thursday, but I am not sure about which direction to go. The tumor needs to come out now, but I have a few weeks after surgery to choose a program? My primary gynecologist is incompetent at best, who has told me conflicting versions of his poor standard of care. Not sure whom to trust. Any thoughts? I am not staged or really fully diagnosed but I am trying to make the best decisions because I have lost faith in my very well regarded gyne.  How did any of you make your choices as to care?

CheeseQueen57's picture
CheeseQueen57
Posts: 931
Joined: Feb 2016

My Gyn should have found my cancer much sooner but that is water under the bridge. When I found out I had cancer I got myself to the best Gyn/oncologist I could at the best cancer center in my area. And if need be I’ll travel to get the best. I got second opinion at MD Anderson in Houston and if my remission stops I think I will be switching to Penn. Don’t be afraid to seek the best care possible. You only have one life. Good luck. 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Several of us are here due to the incompetence of our gynecologists. Sorry to put it that way, and while it is truly water under the bridge, I had to chime in. I had symptoms - for which I sought answers - for at least 4-5 years. They were always attributed to late menopause, which runs in our family. And, because we don't have any family history of cancer, I was sure *I* would never get it and thus never had the fear to keep pushing for answers. The best advice, as our friends here note, it to get to a gynecological oncologist , stat. Best wishes and please keep us posted. 

BluebirdOne's picture
BluebirdOne
Posts: 347
Joined: Jul 2018

Thanks so much! I have now decided on the Mayo Clinic and leave tomorrow with my husband and dog. Consulation with the gyne onco Tuesday, hysterectomy Thursday. I am preliminarily DX at grade 3 tumor, serous, but was very happy that the new doc at Mayo wanted to see the actual slides as the pathologist was at a community hospital following D&C hysteroscopy. Also had a complication following the procedure and ended up in the emergency room but did get a CT scan and they also want the films, not just the reading. 

 

"Getting effective treatment depends on identifying the right problem. In a recent study, 88 percent of patients who came to Mayo Clinic for a second opinion received a new or refined diagnosis." (from their website) (This also cuts both ways) 

My first opinion gyne oncologist just took their word for what was going on, I guess after the hysterectomy there will be new path as well.  

 

My first gyne did not take me seriously and did not even follow up after my visit to the ER for two days. 

 

I feel like I am in the best hands, but am in limbo until the actual surgery and DX. 

 

 

derMaus's picture
derMaus
Posts: 561
Joined: Nov 2016

Hi BlueBird, I just posted something that my doctor said about tumor profiling. You may want to ask about a Foundation One report, or similar, so you have a full array of treatment options...especially if, God forbid, you have Lynch or something else shows up (I do, something did...so I always encourage people to ask).

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2775
Joined: Mar 2013

BluebirdOne, I think working with a gynecologic oncologist is your best bet to deal with this.  Not sure if you are taking anyone with you to act as a "second set of ears" or your scribe for notes, but if you do they need to understand to listen and write, write, write - I laugh at how my BFF spelled some things, but I appreciate the notes to this day.  I will say, if you think your prmiary gyn is incompetent - why trust what he/she is saying?  

Work with a gyn onc who will find out what really is going on and what, if anything, needs to be done.  If you do need treatment, they will make a plan and you work the plan.  The ladies will be here to listen and help.  

I am glad you have found us - you are not alone. 

BluebirdOne's picture
BluebirdOne
Posts: 347
Joined: Jul 2018

Sorry, I just saw your reply now. My husband and dog are coming along and he is a good note taker, and also plans on recording our consultation if allowed. The dog is for moral support and we can't leave him home as he is really old and has a heart condition. I chewed out my original gyne for everything from being 1 1/2 late MIA before my surgery, to not calling me for two days post procedure when he knew I had to go to the ER immediately post procedure. Not to mention making me wait 5 weeks for the D&C. Plus he partially removed the giant tumor that turned out to be cancer, because he was an idiot and thought it was just a fibroid. Post surgery he develope two sets of stories to tell my husband and myself, contradicting himself several times. And don't get me started on the bus station like surgical center. 

 

I have some comfort that I am in the best hands and am getting immediate care, however, I have times that I feel like I am silently screaming with terror. I have a lot to live for, a new grandchild, great kids, great husband, incredible friends. I am a fighter, but even fighters can have a hard time coping. I am told by a friend with advanced prostate cancer that after my final DX I will be better able to cope with what is coming. I hope so! 

Thanks so much and hello to all my new friends! 

pato58's picture
pato58
Posts: 115
Joined: Jun 2018

Hi, welcome to this board of really kind ladies. Listen to them.
To add to NoTimeForCancer's advise, I would recommend using the Voice memo in your cell ph to record, especially your Dr's words. I believe it is legal in NJ. But, you can always ask.
Breathe!

BluebirdOne's picture
BluebirdOne
Posts: 347
Joined: Jul 2018

Thanks so much for the advice. My husband, if he gets permission, will tape the entire consultation. Too much to remember, but we are educating ourselves as we go along. I am so happy to have found this board and will report back after the surgery and DX. next Thursday. Lots of wonderful people here, I can see. Thank you for resposnding. 

brockey
Posts: 6
Joined: Jul 2018

I have decided on doing internal radiation . No chem. I will have 3 treatments . Has anyone done this? 

Armywife's picture
Armywife
Posts: 417
Joined: Feb 2018

Brockey, I may have missed this somewhere, but did they tell you what stage and grade your cancer is?  I did not do radiation, but I did do chemo.

brockey
Posts: 6
Joined: Jul 2018

Stage 1A Grade 3 Endometrial Carcinnoma

ConnieSW
Posts: 1497
Joined: Jun 2012

grade and stage as you. Had chemo and brachytherapy. Will celebrate 6 years of NED next month. 

brockey
Posts: 6
Joined: Jul 2018

Congratulations ConnieSW was your Serous?  Why did you do both ( chemo & brach ) ?

 

ConnieSW
Posts: 1497
Joined: Jun 2012

my diagnosis was UPSC.  I did both because it's pretty much the standard. The brachytherapy takes care of a common site for  recurrences  and the chemo goes after any stray cells that have wandered. Most of us here with that diagnosis did both. 

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