how do they determine recurrence?

eaa1964
eaa1964 Member Posts: 1
edited March 2014 in Uterine/Endometrial Cancer #1
I was dx'd almost 1 year ago-July 30, 2008 at 44 yrs old with Serous papillary uterine ca. Treated with TAH/BSO, carbo and taxol + vaginal brachy. stage IIb. had a CT scan at completion of treatment in Dec 2008. gyn onc said it was fine. report said small 4mm nodule in right lung of unknown significance. a couple of hypodense lesions in liver of unknow significance.

after the ct and treatment in december 2008, Gyn onc has done 1 pelvic exam and ca 125 in march 2009. I am scheduled for pelvic exam and ca 125 in august 2009. no mention of a CT or PET scan.

my question...how is recurrance detected?

did you feel different? have any symptoms?

I kind of feel like I am in the dark and unknowledgable. haven't been able to find anything on this topic. as you can imaging I am feeling anxious.

thanks for all the help.

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #2
    That's not the type of followup monitoring I am expecting.
    I just finished treatment last Wednesday (6 rounds carbo-taxol, 28 pelvic IMRT, & 3 vaginal brachys). I will have a CT-scan in 6 weeks and was told that I'd have Ct-scans and CA-125s every 3 months for at least a couple of years.
  • kkstef
    kkstef Member Posts: 688 Member
    #3
    Follow-up varies
    I had Grade 11/111, Stage 3A Uterine endometroid adenocarcinoma. After a TAH/BSO, I had 30 rounds of radiation, 3 of those being "targeted". I completed my Chemo(carbo and taxol) in January. In March I had CT of Abd and pelvis. I now have a pap smear and pelvic exam every 3 months for 2 years and then every 6 months for 3 years. I also will have an annual chest x-ray. My gyn/onc will not do repeated CT scans unless there are any symptoms. He feels that the risk of the radiation plus the fact that CT scans frequently don't identify cancer is not recommended. I was told to watch for the following symptoms: nausea, vomiting, and any pain that does not go away and seems to increase in severity.

    I think each oncologist has their own "protocol".
  • shortmarge
    shortmarge Member Posts: 291
    #4
    kkstef said:

    Follow-up varies
    I had Grade 11/111, Stage 3A Uterine endometroid adenocarcinoma. After a TAH/BSO, I had 30 rounds of radiation, 3 of those being "targeted". I completed my Chemo(carbo and taxol) in January. In March I had CT of Abd and pelvis. I now have a pap smear and pelvic exam every 3 months for 2 years and then every 6 months for 3 years. I also will have an annual chest x-ray. My gyn/onc will not do repeated CT scans unless there are any symptoms. He feels that the risk of the radiation plus the fact that CT scans frequently don't identify cancer is not recommended. I was told to watch for the following symptoms: nausea, vomiting, and any pain that does not go away and seems to increase in severity.

    I think each oncologist has their own "protocol".

    Follow-up
    My follow-up is the same as kkstef.
  • bonniesue
    bonniesue Member Posts: 124 Member
    #5
    kkstef said:

    Follow-up varies
    I had Grade 11/111, Stage 3A Uterine endometroid adenocarcinoma. After a TAH/BSO, I had 30 rounds of radiation, 3 of those being "targeted". I completed my Chemo(carbo and taxol) in January. In March I had CT of Abd and pelvis. I now have a pap smear and pelvic exam every 3 months for 2 years and then every 6 months for 3 years. I also will have an annual chest x-ray. My gyn/onc will not do repeated CT scans unless there are any symptoms. He feels that the risk of the radiation plus the fact that CT scans frequently don't identify cancer is not recommended. I was told to watch for the following symptoms: nausea, vomiting, and any pain that does not go away and seems to increase in severity.

    I think each oncologist has their own "protocol".

    MRI with gadoliniun??? any surveillance
    I heard from the rad onc. that abd. pelvic MRI with gaddolinium would be good if there was symptoms and chest xray// any feedback?
  • lociee
    lociee Member Posts: 102
    #6
    I have had a recurrence.
    I have had a recurrence. Had a complete hysterectomy two years ago this past Oct. After surgery they said I was fine. No chemo or radiation. I continued to experience pelvic pain - A CAT scan showed something - but doc thought it was "just scar tissue from surgery". By the time they figured out that the cancer had spread to my pelvis and my lungs it was Stage 4b - grade 3. Since September I've had chemo (carbo/taxol) 6 rounds - Doxil - several rounds - 33 radiation treatments. Soon I go back on taxol to try to keep the tumor in my pelvis (runs along my colon) in check. I'm clearly an example of not catching things in time. Make sure they follow you closely with CT scans/PET scans/and the CA125. Demand it. They should definitely follow your lung and liver for any changes. Good luck!
  • bonniesue
    bonniesue Member Posts: 124 Member
    #7
    lociee said:

    I have had a recurrence.
    I have had a recurrence. Had a complete hysterectomy two years ago this past Oct. After surgery they said I was fine. No chemo or radiation. I continued to experience pelvic pain - A CAT scan showed something - but doc thought it was "just scar tissue from surgery". By the time they figured out that the cancer had spread to my pelvis and my lungs it was Stage 4b - grade 3. Since September I've had chemo (carbo/taxol) 6 rounds - Doxil - several rounds - 33 radiation treatments. Soon I go back on taxol to try to keep the tumor in my pelvis (runs along my colon) in check. I'm clearly an example of not catching things in time. Make sure they follow you closely with CT scans/PET scans/and the CA125. Demand it. They should definitely follow your lung and liver for any changes. Good luck!

    lociee
    So sorry about your reoccurrence. Where in your pelvis was your pain? What stage and grade were you originally dx with and did you have surgery with a gyne onc? It seems as though you have to push for more than a chest xray? unless you have symptoms? How often do you need a ct/pet and ca 125? thanks
  • lociee
    lociee Member Posts: 102
    #8
    bonniesue said:

    lociee
    So sorry about your reoccurrence. Where in your pelvis was your pain? What stage and grade were you originally dx with and did you have surgery with a gyne onc? It seems as though you have to push for more than a chest xray? unless you have symptoms? How often do you need a ct/pet and ca 125? thanks

    I had a CAT scan about a
    I had a CAT scan about a month after radiation was completed (which was a few weeks ago) - the tumor is still the same size - but hopefully not as active. The tumor hurts because it's around my colon - sort of hits that whole area and leaves me with aching, throbbing genitals - not pleasant! I never felt anything in my lung - but the lung responded well to chemo and seems inactive right now. I did have surgery with an gyn oncologist and was originally stage 1. I have a ca 125 about every four weeks now - the numbers went down when I started radiation - but have since begun climbing again. That's such an easy test that you should have that one often. The cancer in my pelvis and in my lung is uterine. They did a biopsy. I think they plan to do another CAT - or PET scan in about a month to check progression, but I'm not sure.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #9
    lociee said:

    I had a CAT scan about a
    I had a CAT scan about a month after radiation was completed (which was a few weeks ago) - the tumor is still the same size - but hopefully not as active. The tumor hurts because it's around my colon - sort of hits that whole area and leaves me with aching, throbbing genitals - not pleasant! I never felt anything in my lung - but the lung responded well to chemo and seems inactive right now. I did have surgery with an gyn oncologist and was originally stage 1. I have a ca 125 about every four weeks now - the numbers went down when I started radiation - but have since begun climbing again. That's such an easy test that you should have that one often. The cancer in my pelvis and in my lung is uterine. They did a biopsy. I think they plan to do another CAT - or PET scan in about a month to check progression, but I'm not sure.

    surveillance protocol
    I'm so sorry about your recurrence lociee.

    I have been in surveillance for a few months and had the same questions. Here's what my dr just told me this week.

    CA125 every 2 months; office visit every 4 months. No regular scans due to the risk of radiation exposure. He said that I would be the best indicator of any problem - things to watch for is any change that lasts for 2 weeks - any change in frequency, duration, or intensity of a symptom.

    Based on lociee's story it's clear that we need to fight and be proactive and advocate and get 2nd opinions if necessary.

    Blessings on everyone battling this illness and our caregivers,

    Mary Ann
  • bonniesue
    bonniesue Member Posts: 124 Member
    #10
    daisy366 said:

    surveillance protocol
    I'm so sorry about your recurrence lociee.

    I have been in surveillance for a few months and had the same questions. Here's what my dr just told me this week.

    CA125 every 2 months; office visit every 4 months. No regular scans due to the risk of radiation exposure. He said that I would be the best indicator of any problem - things to watch for is any change that lasts for 2 weeks - any change in frequency, duration, or intensity of a symptom.

    Based on lociee's story it's clear that we need to fight and be proactive and advocate and get 2nd opinions if necessary.

    Blessings on everyone battling this illness and our caregivers,

    Mary Ann

    surveiilance
    Thanks for your physicians recommendations. My mother is experiencing right groin pain and it is worrisome but because it is so close to finishing radiation you hate to scan it and have something like scar tissue. they rec. a MRI for this if it does not go away. Any of you experience groin pain(on one side) a month after treatments? I wish my mom would get on this site with you as I have found such help with all of you. My moms gyne onc. recommended chest xray yearly and pap every three months for one year then less for the next four years. I had no idea that radiation of a cat scan or other tests was that great or dangerous? Blessings to all and in keeping our support.
  • deanna14
    deanna14 Member Posts: 732
    #11
    bonniesue said:

    surveiilance
    Thanks for your physicians recommendations. My mother is experiencing right groin pain and it is worrisome but because it is so close to finishing radiation you hate to scan it and have something like scar tissue. they rec. a MRI for this if it does not go away. Any of you experience groin pain(on one side) a month after treatments? I wish my mom would get on this site with you as I have found such help with all of you. My moms gyne onc. recommended chest xray yearly and pap every three months for one year then less for the next four years. I had no idea that radiation of a cat scan or other tests was that great or dangerous? Blessings to all and in keeping our support.

    groin pain
    I too experience groin pain periodically. I have mentioned it to my doctor, but he seems unconcerned. I just had PET/CT scan a couple of weeks ago and nothing was found on the scan. So, I don't know what causes it, but it seems to happen when I have done activity that I don't do frequently.

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