more support

janaes Member Posts: 799 Member

This is all so crazy.  Yesterday i went and saw my gynocoligist just for a follow up on my hysterectomy.  while I was there I talked to her and told her i was starting chemo treatments.  After I told her that she wanted to know why i needed chemo and she decided to call the doctor who decided this and the other doctor who was telling me i didnt need chemo either.  I left her office just really confused and angry.  Ive been talking to my family yesterday afternoon, evening, and today.  I have so many emotions.  After talking to my mom and my dad i was led to look at my full pathology report taken at the time of my hysterectomy (i found out that the pathology report i had before was just part of it). and read it more and found that the report says that my cancer was not as bad as the originally saw at diagnosis which was when i had a biopsy.  The report says that the specimen taken at the time of the hysterectomy was this.  "The vast majority of the specimin consists of poorly differentiated endometriod adenocarcinoma.  There are some areas that appear to be less differentiated but not to the extent that was identified in the previous biopsy specimen."  (which was the specimen from my original biopsy). At the end of the report it says because of the findings of the first biopsy (which diagnosed me as having Carcinosarcoma stage 2 grade 3) this case may be appropriatly treated as a carcinosarcoma. 

     Before all this happened yesterday, of course, I was planning and even had it sceduled (and still do) to do chemo this comming tuesday.  Im glad I was led to the pathology report and found the information because it helps me know that the pathologists ( according to the report there were three of them that looked at my cancer) think i ch

could be treated for a cacinosarcoma.  That is just a few more people that think I should have chemotheropy.  Now that is 7 doctors and three pathologists who think i need chemo and only 1 sometimes 2 doctors who think i dont.   What do you guys think of all this? I Really could use some support.


  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    edited August 2016 #2
    janaes. Chemo or radiation may help you

    Poorly differentiated cancer means that you likely have an aggressive grade 3 cancer. It means that your cancer cells do not look normal at all. Normally, grade 3 cancers requires chemotherapy. Maybe you need another opinion. Poorly differentiated Endometriod cancer tells me that it is a grade 3 and very aggressive. Look up everything in your pathology report on line to increase your understanding of your situation. You cannot provide "informed consent" regarding treatment unless you know all about your cancer.

    Wishing you the best,



  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited June 2016 #3
    Janaes, Is your gyn an

    Janaes, Is your gyn an Oncology GYN?  If not, it would be in your best interest to go see one.

    It is terrible how back and forth you have been pulled. I hope you can get a solid answer from the medical staff to help you through all of this.  Did your report say what your stage is? I'm asking because there is a difference of opinion with 1A on chemo or not. I don't recall if you were ever given your stage post the surgery. I know you said they had that note at the end but is that their findings for the final - stage 2 / grade 3? Because if it is, there should not even be a question about having chemo. I haven't read anything that says go into a watch mode for stage 2.

    I hope you get the answers you need. Cancer is hard enough when you get clear advise on how to proceed

    Love and Hugs,


  • Kvdyson
    Kvdyson Member Posts: 790 Member

    Hi Janaes, with carcinosarcoma, the standard of care is chemo. You might want to Google the 2/2016 version of the "NCCN Treatment Guideline for Uterine Neoplasms", and search for "carcinosarcoma" or go to page 58 of the pdf for a discussion of the standard of care.

    I agree that you should try to move forward with starting treatment next week. It's a very aggressive prognosis and most gyn-onc's treat it that way. My final diagosis (I ended up with 3 to be sure) was uterine carcinosarcoma, stage 1b, grade 3. After surgery (TAH & BSO, 14 lymph nodes excised, 10.5 cm tumor), my frontline treatment was a "sandwich" of chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - completed May 2016, and radiation - external, 28 treatments, completed Mar 2016.

    I just had my first scan after frontline and it showed NED. I feel strongly that the aggressive treatment saved my life and would do it again exactly the same way. Please do not wait to get started. You don't want to give the cancer cells a chance to spread. 

    Wishing you strength and support, Kim

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited June 2016 #5
    Different pathologies

    Janaes, I was originally diagnosed with carcinosarcoma after my biopsy and also after surgery, though it was noted that there were scant sarcomatous elements.  A third pathologist looked at the slides and diagnosed it as serous carcinoma instead.  There is at least one other woman on this site whose original diagnosis of carcinosarcoma was changed on subsequent opinions.  You might seek a second opinion on the pathology as pathologists can disagree. HOWEVER..... whichever one it is, it is still a grade 3 very aggressive cancer.  Kim is right about the standard of care for stage 2 grade 3 cancers, chemo is recommended.  I would echo her suggestion to check out the NCCN guidelines.


  • janaes
    janaes Member Posts: 799 Member
    Thank you very very very much

    Thank you very very very much for your wonderful and invaluable support.  I dont think I could get through this without you.  Yesterday afternoon I waqs sitting on my couch and contimplating canceling my chemo appointment for tuesday. I did not do it. I did not have any type of feeling that I should so i DID NOT DO IT. After reading your posts today i look back and am glad I didnt do it. 

    Kim thank you for the info on the guidlines. It was very helpful and for sharing your personal experience

    Hey Chris how do I get another patholigist to look at my cancer?  I have no idea how to even get started with that.  Could you help me as soon as you can.  Thank you also for the accual webcite for the guidelines it was very helpful.

    Thank you cathy and cindi also for your knowledge.

    I love you all.  Thanks for being so strong and going through your journey so I can learn from you.