Update on my sister, had some questions

ayostacey
ayostacey Member Posts: 57
edited September 2015 in Uterine/Endometrial Cancer #1

Hi, I had originally posted about my sister's endo cancer coming back. In summary, she was diagonosed with uterine cancer, had the robotic surgery, staged 1A or 1B (not quite sure) but what they said was that it was contained to the uterus with less than 50 percent into the wall of uterus. All nodes tested were negatvie and she said she doestn beleive they did a wash becuase it was contained.  CT scan of pelvis, lungs and abdomen prior to surgery was all negative. Dr told her 99 percent chance it will never come back. Grade 2 cancer, so they did the readiotion treatment just as a precaution. 4 months later, she had stomach pains and thought it might be appendix. Went to ER and they did a CT scan that showed masses.  She went to see her gyno/onco dr and he confirmed 6 small masses in abdomen and pelvis.

She went to get a 2nd opinion from a Dr recommended by her boss who has been in a lot of cancer research. He looked over her initial Dr's recommondations, and agreed that the type of chemo they want to give her (not sure which one , will get the name shortly) is the same one that he'd give. He said it is tried and true. He also said to stay away from clinical trials. He told her, that he doesnt really tell patients that but "off the record" he is telling her that clinical trials help people in the future, but wouldnt be of any help to her. 

She had a needle biopsy done of one of the tumors and they didnt regrade it or anytihng, just said its the same type of cancer and chemo will start next week.  3 rounds (3 weeks apart) and then a CT scan, then 3 more rounds.

Has anyone had multiple masses come back and still go into remission for a long time or even overcome the "5-year survival rate?"  Some of the statistics for reoccuring endometrial cancer sound so scary.

I also read someone's post today who said she was told the longer the reoccurance happens after initial treatment, the better your chances are of it staying gone again. That worries me since my sister's  was back just a few months after surgery and radiation. Is there any truth in that?

BTW: my sister is 46 and in relatively good health otherwise.

 

Comments

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #2
    Sorry to hear about your

    Sorry to hear about your sister's recurrence.   Everyone is different and every doctor is different with the type of treatment given.   I had a hysterectomy at age 45.  Thought it was going to be a regular total hysterectomy.  When I went for my follow up a week later, I was told they found cancer.  So I had to do another surgery for staging and at that time they also removed my appendix and omentum plus lymph nodes.   I was staged at Stage 3a, Grade 2 Endometrial Adenocarcinoma.   Although at staging they did not find any more cancer, I decided to do chemo as a precaution.   Then I did 3 bracythereapy HDR.   My radiologist/oncologist did not want me to do pelvic radiation even though my gyne/onc wanted it because he said that the risks out weighed the benefit for me since I scar easily.

    I am now 55 years old.  I did have a recurrence near the end of 2009 and went through many doctors (my original doctor retired) before finding a doctor to do the surgery.  I had surgery in February of 2010.  Even though I had a positive biopsy on a mass, after the surgery the mass turned out negative but a lymph node was positive.   But I just went from there on a wait and see approach.

    I do now have a kidney stent due to the HDR radiation affecting my ureter for my left kidney and I do have a mass (which has been there since 2009) and grew last year but we have been watching it.  Since August of 2014, I have a stent which needs replaced every 3 months under anesthetic.   The mass is slow growing but I am having surgery sometime soon to have an implant surgery for my ureter and they will at that time biopsy the part of the mass that they could not biopsy but which shows a FDG uptake of 3.4 SUV.

    So from my original diagnosis in September 2005, I just celebrated ten years!   I hope this helps.

    My best to you and your sister.

    Kathy

  • ayostacey
    ayostacey Member Posts: 57
    #3
    Kaleena said:

    Sorry to hear about your

    Sorry to hear about your sister's recurrence.   Everyone is different and every doctor is different with the type of treatment given.   I had a hysterectomy at age 45.  Thought it was going to be a regular total hysterectomy.  When I went for my follow up a week later, I was told they found cancer.  So I had to do another surgery for staging and at that time they also removed my appendix and omentum plus lymph nodes.   I was staged at Stage 3a, Grade 2 Endometrial Adenocarcinoma.   Although at staging they did not find any more cancer, I decided to do chemo as a precaution.   Then I did 3 bracythereapy HDR.   My radiologist/oncologist did not want me to do pelvic radiation even though my gyne/onc wanted it because he said that the risks out weighed the benefit for me since I scar easily.

    I am now 55 years old.  I did have a recurrence near the end of 2009 and went through many doctors (my original doctor retired) before finding a doctor to do the surgery.  I had surgery in February of 2010.  Even though I had a positive biopsy on a mass, after the surgery the mass turned out negative but a lymph node was positive.   But I just went from there on a wait and see approach.

    I do now have a kidney stent due to the HDR radiation affecting my ureter for my left kidney and I do have a mass (which has been there since 2009) and grew last year but we have been watching it.  Since August of 2014, I have a stent which needs replaced every 3 months under anesthetic.   The mass is slow growing but I am having surgery sometime soon to have an implant surgery for my ureter and they will at that time biopsy the part of the mass that they could not biopsy but which shows a FDG uptake of 3.4 SUV.

    So from my original diagnosis in September 2005, I just celebrated ten years!   I hope this helps.

    My best to you and your sister.

    Kathy

    Thank you for sharing that

    Thank you for sharing that with me. It sounds like you have been through a lot, but what a blessing that it's been 10 years! They never re-staged her so I dont even know what catagory she'd be in.

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #4
    ayostacey said:

    Thank you for sharing that

    Thank you for sharing that with me. It sounds like you have been through a lot, but what a blessing that it's been 10 years! They never re-staged her so I dont even know what catagory she'd be in.

    I don't think they restage

    I don't think they restage you.   I don't know what I would be now either since the last time the recurrence was in a lymph node.   Hang in there!   I only think they stage you if it is a different cancer, not the same thing.   It would just be considered metastized.   Thats what was on my chart.

  • ayostacey
    ayostacey Member Posts: 57
    #5
    Kaleena said:

    I don't think they restage

    I don't think they restage you.   I don't know what I would be now either since the last time the recurrence was in a lymph node.   Hang in there!   I only think they stage you if it is a different cancer, not the same thing.   It would just be considered metastized.   Thats what was on my chart.

    Ohhh ok, thank you.

    Ohhh ok, thank you.

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