Recurrence After Only 7 Months

In March I had a total abdominal hysterectomy -- was diagnosed with Stage 1b uterine cancer. Pathology report showed 16 lymph nodes tested and all clean. No spread to ovaries, cervix, fallopian tubes. No further treatment was recommended -- only 3 month follow-ups. At my last follow-up on October 17, all seemed to go well. I mentioned to gyn-onc. that I had something strange happening -- there was a foul odor and discharge from my belly button for the last few weeks. I had been using antibiotic ointment which took care of the odor but discharge was still here. Doctor thought it might be some granulation tissue and treated me with silver nitrate. As a precaution, he took a biopsy but wasn't expecting anything bad. He called me a week later and shattered my world -- the cancer was back. I was such a mess cause I couldn't believe was he was saying. This wasn't supposed to happen with Stage 1b. Had a PET/CT and get results tomorrow. Expecting it to light up like a Xmas tree! So scared about what doctor will tell me. Unfortunately, I've been making myself more anxious by reading stuff on internet about recurrences. Husband is ready to throw my computer out the window. Looking for positive info but everything is so negative when cancer doesn't come back in vaginal cuff or pelvic area. Can't imagine how cancer is in belly button. Plan so far is more surgery to remove offending tissue and then 30 radiation treatments. Of course all that could change with PET scan results.
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Comments

  • Songflower
    Songflower Member Posts: 608
    I am sorry for your recurrance. The internet is behind about 2-3 years in information and probably more in uterine cancer. You can make yourself crazy studying too much. You need to learn some but will never be an expert. This does not mean the end is here; many women are living quite a few years with this cancer. There are many options with radiation and chemo. I read an article in coping magazine and this young many recommended not to read at all on the internet that it was a waste of time. He believed in leaving it up to the Doctors and putting energy in your daily life. I recurred after being negative except for positive washings and I was a 1 something. I am three years out and while I have a very agressive cancer I still seem to be doing well. Radiation sounds like a good treatment at the current time.

    Diane
  • snyderpm
    snyderpm Member Posts: 40
    I had similar recurrence
    Noodles, I am so sorry to read about what you are going through. I had a similar situation. I was told I had almost no cancer, just some cancer cells in my uterus, and nothing anywhere else. I had a complete histerectomy by the diVinci method. I had no complications. In 6 months it was back in my abdomen and omentum. Seeds in the lining of my abdomen and a 2cm tumor in my omentum. They quickly performed a laparotomy and scraped the seeds out and removed my omentum. After I had 4 rounds of chemo. I am now more than 7 months since my last chemo, and all my tests are very negative for cancer.

    Personally, I think I was contaminated, and that could very well be what happened to you. I think a lot of people are contaminated. Contamination is one of the official ways cancer spreads, but doctors never talk about it. Contamination can also happen even before you have an operation to remove everything. It can happen during the biopsy. Personally, I would rather think I was contaminated, rather than it came back because the cancer is aggressive. I wonder why they are going to do radiation on you and not chemo? Good luck, and I hope you continue to post here, becasue it gave me a lot of hope, and understanding, and I would bet it will do the same for you.
  • JoAnnDK
    JoAnnDK Member Posts: 275
    snyderpm said:

    I had similar recurrence
    Noodles, I am so sorry to read about what you are going through. I had a similar situation. I was told I had almost no cancer, just some cancer cells in my uterus, and nothing anywhere else. I had a complete histerectomy by the diVinci method. I had no complications. In 6 months it was back in my abdomen and omentum. Seeds in the lining of my abdomen and a 2cm tumor in my omentum. They quickly performed a laparotomy and scraped the seeds out and removed my omentum. After I had 4 rounds of chemo. I am now more than 7 months since my last chemo, and all my tests are very negative for cancer.

    Personally, I think I was contaminated, and that could very well be what happened to you. I think a lot of people are contaminated. Contamination is one of the official ways cancer spreads, but doctors never talk about it. Contamination can also happen even before you have an operation to remove everything. It can happen during the biopsy. Personally, I would rather think I was contaminated, rather than it came back because the cancer is aggressive. I wonder why they are going to do radiation on you and not chemo? Good luck, and I hope you continue to post here, becasue it gave me a lot of hope, and understanding, and I would bet it will do the same for you.

    Omentum
    I thought removal of the omentum was part of a total hysterectomy. Did your doctor tell you why it was left behind?
  • daisy366
    daisy366 Member Posts: 1,458 Member

    I am sorry for your recurrance. The internet is behind about 2-3 years in information and probably more in uterine cancer. You can make yourself crazy studying too much. You need to learn some but will never be an expert. This does not mean the end is here; many women are living quite a few years with this cancer. There are many options with radiation and chemo. I read an article in coping magazine and this young many recommended not to read at all on the internet that it was a waste of time. He believed in leaving it up to the Doctors and putting energy in your daily life. I recurred after being negative except for positive washings and I was a 1 something. I am three years out and while I have a very agressive cancer I still seem to be doing well. Radiation sounds like a good treatment at the current time.

    Diane

    I agree
    with Diane. It's hard NOT to be scared, though. I admitted this to my doc last week. Cancer is unpredictable and we can't get too far ahead of ourselves or else we will be paralyzed with fear and worry that we don't enjoy the here and now.

    Your husband sounds very supportive. Enjoy each day with him. I encourage you to take someone with you to appointment and don't be afraid to ash lots of questions and get copies of your records. There is too much to absorb in the beginning.

    Hang in there. God bless. Mary Ann
  • CindyGSD
    CindyGSD Member Posts: 190
    JoAnnDK said:

    Omentum
    I thought removal of the omentum was part of a total hysterectomy. Did your doctor tell you why it was left behind?

    Joann
    My omentum was not removed with my hysterectomy either. I didn't ask why because I didn't think to question it...in fact I didn't even know what it was.

    Cindy
  • RoseyR
    RoseyR Member Posts: 471 Member
    JoAnnDK said:

    Omentum
    I thought removal of the omentum was part of a total hysterectomy. Did your doctor tell you why it was left behind?

    Omentum and Initial Treatment of uterine cancer


    I thought the omentum was only removed if in state 1A or B you had a high-grade (very aggressive) tumor; otherwise, it is not routinel removed.

    But that leads to the question of your initial diagnosis--you say your cancer was caught early and treated entirely with surgery, but what kind of tumor was it? If serous or carcinosarcoma (aggressive tumors), I'm surprised you wouldn't have received some chemo or radiation after surgery as well as removal of your omentum.

    As for your husband's desire to get you away from the computer, I am of two minds. Sure, you can drive yourself crazy looking at information that is sometimes a bit dated, or from dubious sources, but trying to find out about your condition can be empowering (sorry for overused word) and make you feel less passive, less victimized. There IS some valuable information on the internet if one searches for good web sites and recent clinical articles--and even testimonials from current patients, as we receive here, on this Board. Perhaps you should try to limit your time on the computer to two or three hours a day as a compromise.

    Best,
    Rosey
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    JoAnnDK said:

    Omentum
    I thought removal of the omentum was part of a total hysterectomy. Did your doctor tell you why it was left behind?

    Omentum
    I still have my omentum. I think it depends on the stage of the cancer at the time of hysterectomy whether they remove it or not. I had hysterectomy, 17 nodes (negative), and pelvic wash (negative). I was 1a.

    Noodles, I'm so sorry about your recurrence. I'm sure you're beside yourself with worry. This business about it recurring at the vaginal cuff isn't always the case! Did you have internal rads?

    Regarding the "contamination" theory, I do believe it's valid, but have no idea how they'd know if it was contamination or micrometastasis that simply could not be seen at the time of surgery. Snyder, what did your doc say? Remember the old wive's tale about "don't cut cancer?"

    Please keep us posted about your treatments and come here for support and understanding.

    Sending hugs and prayers,
    Suzanne
  • noodles886
    noodles886 Member Posts: 25
    RoseyR said:

    Omentum and Initial Treatment of uterine cancer


    I thought the omentum was only removed if in state 1A or B you had a high-grade (very aggressive) tumor; otherwise, it is not routinel removed.

    But that leads to the question of your initial diagnosis--you say your cancer was caught early and treated entirely with surgery, but what kind of tumor was it? If serous or carcinosarcoma (aggressive tumors), I'm surprised you wouldn't have received some chemo or radiation after surgery as well as removal of your omentum.

    As for your husband's desire to get you away from the computer, I am of two minds. Sure, you can drive yourself crazy looking at information that is sometimes a bit dated, or from dubious sources, but trying to find out about your condition can be empowering (sorry for overused word) and make you feel less passive, less victimized. There IS some valuable information on the internet if one searches for good web sites and recent clinical articles--and even testimonials from current patients, as we receive here, on this Board. Perhaps you should try to limit your time on the computer to two or three hours a day as a compromise.

    Best,
    Rosey

    Thanks For All The Support
    Mine was Stage 1B Uterine Adenocarcinoma. The surgeon removed 16 lymph nodes and all were clear. Pathology report showed no metastasis to ovaries, cervix, or fallopian tubes.
    Gyn-onc. felt no further treatment was needed -- so I had no chemo or radiation. Said chance of recurrence was only 5%. I find reading these forums is more beneficial than reading medical sites with very general info. At least here, I'm learning from women who have gone through similiar situations. What boggles my mind is why I have a cancerous discharge from belly button. Doctor told in his career (24 years), he's only seen one similar case, she was treated with further surgery on belly button to remove offending tissue, had 30 radiation treatments and she is still disease free after 7 years later. Right now he has me scheduled for the same surgery/radiation but that could change if PET results show more.
  • jazzy1
    jazzy1 Member Posts: 1,379
    RoseyR said:

    Omentum and Initial Treatment of uterine cancer


    I thought the omentum was only removed if in state 1A or B you had a high-grade (very aggressive) tumor; otherwise, it is not routinel removed.

    But that leads to the question of your initial diagnosis--you say your cancer was caught early and treated entirely with surgery, but what kind of tumor was it? If serous or carcinosarcoma (aggressive tumors), I'm surprised you wouldn't have received some chemo or radiation after surgery as well as removal of your omentum.

    As for your husband's desire to get you away from the computer, I am of two minds. Sure, you can drive yourself crazy looking at information that is sometimes a bit dated, or from dubious sources, but trying to find out about your condition can be empowering (sorry for overused word) and make you feel less passive, less victimized. There IS some valuable information on the internet if one searches for good web sites and recent clinical articles--and even testimonials from current patients, as we receive here, on this Board. Perhaps you should try to limit your time on the computer to two or three hours a day as a compromise.

    Best,
    Rosey

    Noodles
    Sorry to hear about the recurrence...doesn't seem fair. First thing came to mind, what type of doc -- hopefully oncologist OB and could they have misdiagnosed you initially? Yes I've known women who had a recurrence as soon as 3 months.


    After my OB diagnosed the cancer and called to tell me, one thing he said...don't read up a lot on the internet...not always accurate. I still looked, but was more open about it, not believing everything I read. Possibly limit your time. What I've always found helpful, get support from others such as right here...vs. lots of unknown reading.

    I've known people in stage 1/2 uterine who still have chemo...possibly not bother with radiation. Docs in many cases give them option to have chemo, suggesting it might be a great precaution.

    We can all wonder this or that, but you're right here and now dealing with recurrence. Pick yourself up and go forward and gain additional information to fight the fight.

    We're all here for you, so plse use us for support...

    Hugs,
    Jan
  • noodles886
    noodles886 Member Posts: 25
    jazzy1 said:

    Noodles
    Sorry to hear about the recurrence...doesn't seem fair. First thing came to mind, what type of doc -- hopefully oncologist OB and could they have misdiagnosed you initially? Yes I've known women who had a recurrence as soon as 3 months.


    After my OB diagnosed the cancer and called to tell me, one thing he said...don't read up a lot on the internet...not always accurate. I still looked, but was more open about it, not believing everything I read. Possibly limit your time. What I've always found helpful, get support from others such as right here...vs. lots of unknown reading.

    I've known people in stage 1/2 uterine who still have chemo...possibly not bother with radiation. Docs in many cases give them option to have chemo, suggesting it might be a great precaution.

    We can all wonder this or that, but you're right here and now dealing with recurrence. Pick yourself up and go forward and gain additional information to fight the fight.

    We're all here for you, so plse use us for support...

    Hugs,
    Jan

    PET/CT Scan Results
    Just got back from gyn-oncologist and he gave me the PET/CT scan results. Positive news first -- nothing in lungs, liver, breast, spleen. Did find the cancer in the belly button area. He's not 100% sure how it got there -- said there is a lymph node that travels from uterus to belly button area and that could be the culprit. Told me this would be considered a local/regional recurrence and could be cured. Some spots were noted in my abdomen on PET/CT but of unknown origin. Could be scar tissue, previous infection, inflammation or cancer. He won't know until he does a scope. So tomorrow he will do a laproscopic scope and then surgery to remove cancerous tissue in belly button. If the abdominal spots turn out to be cancerous, that would considered a distant recurrence and very difficult to cure. Either way he is now considering both chemo and radiation. Still can't believe this is happening.
  • snyderpm
    snyderpm Member Posts: 40

    Omentum
    I still have my omentum. I think it depends on the stage of the cancer at the time of hysterectomy whether they remove it or not. I had hysterectomy, 17 nodes (negative), and pelvic wash (negative). I was 1a.

    Noodles, I'm so sorry about your recurrence. I'm sure you're beside yourself with worry. This business about it recurring at the vaginal cuff isn't always the case! Did you have internal rads?

    Regarding the "contamination" theory, I do believe it's valid, but have no idea how they'd know if it was contamination or micrometastasis that simply could not be seen at the time of surgery. Snyder, what did your doc say? Remember the old wive's tale about "don't cut cancer?"

    Please keep us posted about your treatments and come here for support and understanding.

    Sending hugs and prayers,
    Suzanne

    Contamination
    Hey Double Whammy. One place I remembered I saw the "Routes of Metastasis" was at Wikipedia. Transplantation or contamination, was one of the four "Routes of Metastasis".
    I have read about it several other places, and they are all credable. Here it is below.


    Metastasis occurs by four routes:

    1.Spread into body cavities. This occurs by the seeding surface of the peritoneal, pleural, pericardial or subarachnoid spaces. For example, ovarian tumours spreads transperitoneally to the surface of the liver. Mesothelioma can spread through the pleural cavity.[13]
    2.Invasion of lymphatics. This is followed by the transport of tumor cells to regional nodes and ultimately to other parts of the body; it is common in initial spread of carcinomas.
    3.Hematogenous spread. This is typical of all sarcomas but it is the favored route in certain carcinomas (e.g. those originating in kidneys). Because of their thinner walls veins are more frequently invaded than arteries and metastasis follows the pattern of the venous flows.
    4.Transplantation. Mechanical carriage of fragments of tumor cells by surgical instruments during operation or the use of needles during diagnostic procedures.
  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    My omentum was removed.
    When I had my hysterecemy done in April this year, my GynOnc Dr removed the Omentum, all female organs and about 16 lymph nodes. They already knew what cancer it was because of a previous D&C with scope. MMMT (Malignat Mixed Mallirium Tumor (?) (carcinomasacoma)cancer cells found in what was removed from that. 6 rounds of carbo/taxol, no radiation. CT scan on 12 Sep NED. I have another CT Scan on 22 Nov. Just living my life now.

    I was told by GynOnc Dr not to read the Internet because everything is outdated and that each person and treatment is different. I did have a discharge and order from belly button but the dr said it was a yeast infection. What? I did not know that you could get that there too! She gave me to powder and it cleared up, no more problems now.

    I am sorry that the cancer has returned for you. But you made it through once and you can do it again. Keep a postive attitude and keep having a stong support group of family and friends around you. This to shall pass. Good Luck. trish
  • txtrisha55
    txtrisha55 Member Posts: 693 Member

    PET/CT Scan Results
    Just got back from gyn-oncologist and he gave me the PET/CT scan results. Positive news first -- nothing in lungs, liver, breast, spleen. Did find the cancer in the belly button area. He's not 100% sure how it got there -- said there is a lymph node that travels from uterus to belly button area and that could be the culprit. Told me this would be considered a local/regional recurrence and could be cured. Some spots were noted in my abdomen on PET/CT but of unknown origin. Could be scar tissue, previous infection, inflammation or cancer. He won't know until he does a scope. So tomorrow he will do a laproscopic scope and then surgery to remove cancerous tissue in belly button. If the abdominal spots turn out to be cancerous, that would considered a distant recurrence and very difficult to cure. Either way he is now considering both chemo and radiation. Still can't believe this is happening.

    Good Luck tomorrow.
    I will keep you in my prayers. trish
  • zarkapopovic
    zarkapopovic Member Posts: 30

    PET/CT Scan Results
    Just got back from gyn-oncologist and he gave me the PET/CT scan results. Positive news first -- nothing in lungs, liver, breast, spleen. Did find the cancer in the belly button area. He's not 100% sure how it got there -- said there is a lymph node that travels from uterus to belly button area and that could be the culprit. Told me this would be considered a local/regional recurrence and could be cured. Some spots were noted in my abdomen on PET/CT but of unknown origin. Could be scar tissue, previous infection, inflammation or cancer. He won't know until he does a scope. So tomorrow he will do a laproscopic scope and then surgery to remove cancerous tissue in belly button. If the abdominal spots turn out to be cancerous, that would considered a distant recurrence and very difficult to cure. Either way he is now considering both chemo and radiation. Still can't believe this is happening.

    Your Procedure
    I hope that your surgery went well today and that there are no residual problems. Keep us posted on what the treatment plan is.

    Zarka P.
  • noodles886
    noodles886 Member Posts: 25

    My omentum was removed.
    When I had my hysterecemy done in April this year, my GynOnc Dr removed the Omentum, all female organs and about 16 lymph nodes. They already knew what cancer it was because of a previous D&C with scope. MMMT (Malignat Mixed Mallirium Tumor (?) (carcinomasacoma)cancer cells found in what was removed from that. 6 rounds of carbo/taxol, no radiation. CT scan on 12 Sep NED. I have another CT Scan on 22 Nov. Just living my life now.

    I was told by GynOnc Dr not to read the Internet because everything is outdated and that each person and treatment is different. I did have a discharge and order from belly button but the dr said it was a yeast infection. What? I did not know that you could get that there too! She gave me to powder and it cleared up, no more problems now.

    I am sorry that the cancer has returned for you. But you made it through once and you can do it again. Keep a postive attitude and keep having a stong support group of family and friends around you. This to shall pass. Good Luck. trish

    Surgery
    My surgery on Tuesday went as well as could be expected. Home now and lots of pain when I move around and especially when I have to cough/sneeze. Unfortunately, the unidentified spots of my PET did turn out to be cancerous. We were hoping they were only scar tissue.
    Gyn-onc. is now talking about a clinical trial he thinks I'm a good candidate for. I thought clinical trials were only for people as a last resort. I'm so depressed and the pain in belly area isn't helping. One of the people from clinical trial came to talk to me before I was released from hospital. Gave me a packet of info to read with a 46 page consent form (lists every possible side effect). Will have to read everything when my head is a little clearer. Anyone been through a clinical trial?
  • CindyGSD
    CindyGSD Member Posts: 190

    Surgery
    My surgery on Tuesday went as well as could be expected. Home now and lots of pain when I move around and especially when I have to cough/sneeze. Unfortunately, the unidentified spots of my PET did turn out to be cancerous. We were hoping they were only scar tissue.
    Gyn-onc. is now talking about a clinical trial he thinks I'm a good candidate for. I thought clinical trials were only for people as a last resort. I'm so depressed and the pain in belly area isn't helping. One of the people from clinical trial came to talk to me before I was released from hospital. Gave me a packet of info to read with a 46 page consent form (lists every possible side effect). Will have to read everything when my head is a little clearer. Anyone been through a clinical trial?

    I'm sorry...
    ...that the news wasn't better, but keep in mind that you've not gone through any chemo and/or radiation yet so you really are a treatment virgin.

    I have no experience with clinical trials but it could be that you will be on a standard treatment for your type of cancer. Clinical trails don't necessarily mean, testing out new treatments and drugs and if you aren't comfortable with it, you can always say no. What is the trial for? I know someone that is on the same standard treatment protocol as I am, yet she is in a clinical trial. Sometimes they are done just to compare two standarized treatments side by side.

    If you post all the information related to it, I'm sure many will speak up and reassure you that you aren't being used as a ginnea pig.

    Take care,
    Cindy
  • daisy366
    daisy366 Member Posts: 1,458 Member
    CindyGSD said:

    I'm sorry...
    ...that the news wasn't better, but keep in mind that you've not gone through any chemo and/or radiation yet so you really are a treatment virgin.

    I have no experience with clinical trials but it could be that you will be on a standard treatment for your type of cancer. Clinical trails don't necessarily mean, testing out new treatments and drugs and if you aren't comfortable with it, you can always say no. What is the trial for? I know someone that is on the same standard treatment protocol as I am, yet she is in a clinical trial. Sometimes they are done just to compare two standarized treatments side by side.

    If you post all the information related to it, I'm sure many will speak up and reassure you that you aren't being used as a ginnea pig.

    Take care,
    Cindy

    I agree with Cindy. I would
    I agree with Cindy. I would not rush into trial without knowing EVERYTHING about it. This journey has got to be about you first and assure you that you will not be under-treated.

    Keep up posted. Hope you feel better soon. I remember those early days.
  • noodles886
    noodles886 Member Posts: 25
    daisy366 said:

    I agree with Cindy. I would
    I agree with Cindy. I would not rush into trial without knowing EVERYTHING about it. This journey has got to be about you first and assure you that you will not be under-treated.

    Keep up posted. Hope you feel better soon. I remember those early days.

    Clinical Trial
    The clinical trial will be with Paclitaxel, and Carboplatin plus a third drug which has shown promise. I think I've heard women hear refer to the first 2 drugs as Taxel and Carbo, right? They seem to be the standard chemo. From all I've read about recurrent uterine cancer in an area considered distant like abdomen, cure is not usually possible. All that can be achieved is prolonging survival with treatment. Evidently my gyn-onc. doesn't think Taxel and Carbo would be enough and that's why he suggested the clinical trial. Maybe I'm overthinking things but it seems to make sense. I am SO depressed and sad plus angry -- this wasn't supposed to happen to me with Stage 1B cancer.
  • carolenk
    carolenk Member Posts: 907 Member

    Clinical Trial
    The clinical trial will be with Paclitaxel, and Carboplatin plus a third drug which has shown promise. I think I've heard women hear refer to the first 2 drugs as Taxel and Carbo, right? They seem to be the standard chemo. From all I've read about recurrent uterine cancer in an area considered distant like abdomen, cure is not usually possible. All that can be achieved is prolonging survival with treatment. Evidently my gyn-onc. doesn't think Taxel and Carbo would be enough and that's why he suggested the clinical trial. Maybe I'm overthinking things but it seems to make sense. I am SO depressed and sad plus angry -- this wasn't supposed to happen to me with Stage 1B cancer.

    Clinical trial
    Do you know the identifier number for the trial? Does the extra drug have a name or just numbers?

    I'll bet your doctor is encouraging you to do the trial because he already knows what to expect if you just did carbo/taxol alone.
  • deceptiveheart
    deceptiveheart Member Posts: 3
    Diagnosed this week with Carcinosarcoma IB
    Trying to stay positive is the hardest part when you find out you have a rare cancer.I did all the right things i hope.Had a pap smear,vaginal ultrasound & uterine biopsy.Found an excellent gyn/oncologist who did a total abdominal hysterectomy on Oct 18.In hospital 4 days with no pain & everything is healing nicely.Went to have my staples removed & found out I have a rare cancer.Suggested by my Dr., clinical trials with 6 treatments of chemo.I have an appointment to get the ball rolling on Tuesday November 8th.Not alot of current info on this kind of cancer & wondering if chemo is the way to go ? Any info will be appreciated.