Newbie with recurrence

MJ5
MJ5 Member Posts: 14
Hi all. It seems like most members on here have UPSC. I do not, I have endometrial adenocarcinoma, stage 4B. Currently receiving Taxol/Carbo chemotherapy, which is working for now.

I read someone's post on here and she said she was lonely & I started crying. (I can't find the post now). In spite of having a great support system, I realize I am lonely to connect with others who are grappling with this sort of dire prognosis. I did not feel this need to connect the first time I had this cancer (10 years ago).

Thanks for listening, and hope I get to know some of you better. I live in the Phoenix, AZ area.

M.J.
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Comments

  • Sara Zipora
    Sara Zipora Member Posts: 231
    Newbie with recurrence
    Hi,

    I am also Stage IVB ,Grade III of Adenocarcinoma, Undifferentiated mostly clear cell type. I was Dx and operated
    July 2010, just finished four rounds carbo /taxol and two carbo/Doxil. Right now I am 'officially' in remission, on Megace, anti hormonal. Bloods, red and white low from chem, Ca125 down from 84 post op, to 6.4 now. Was ur first 'sighting' Uterine too? Funnily enough ;-( you sound like a success story for our level, compared to what I've read. I too feel blessed with family but so alone! You must feel so frightened, but take heart from List's wonderful ,'warriorettes', many of whom are on multiple 'go-rounds' and still fighting away, and living life to it's fullest. This is an awful disease but you 'meet' the most accomplished women!

    I live in Israel.

    Sara
  • Kaleena
    Kaleena Member Posts: 2,081 Member
    Dear M.J.
    When I first got

    Dear M.J.

    When I first got diagnosed, I did feel so alone. I am married and have three lovely sons but I felt I didn't want to burden them with more than they could handle. The first week was the worst. I would get up in the middle of the night (the worst time) and think about it and have a full blown panic attack. I then would do what I call the "silent scream" which really made me feel better. It was then that I took a positive turn on the whole thing which turned everything around.

    And it seems that every radio station I was listening to played some form of "sad" song that eventually it got to be funny. I would start to get that sad look on my face and my husband would look at me and then we would just laugh.

    Take a positive approach to the whole thing. I even took piano lessons. There are so many people who have this and we are not alone.

    I was diagnosed with endometrial adenecarcinoma in September of 2005, had staging surgery in October 2005 and last year had a surgery February 2010 for a recurrence. I was originally staged with Grade 2 Stage iiia. During my recent surgery, everything was clear except for one lymph node which had microscopic cells in that they removed.

    Please don't feel lonely. Just think of ways you can help others.

    So, I see you had your cancer for ten years. How did you handle follow ups and tests during that time? I think it is great being NED but also difficult. Its like you don't know what class you are in.

    Ooops. Now I am rambling.

    I hope you are feeling better and not lonely.

    Kathy
    (from Pennsylvania)
  • MJ5
    MJ5 Member Posts: 14

    Newbie with recurrence
    Hi,

    I am also Stage IVB ,Grade III of Adenocarcinoma, Undifferentiated mostly clear cell type. I was Dx and operated
    July 2010, just finished four rounds carbo /taxol and two carbo/Doxil. Right now I am 'officially' in remission, on Megace, anti hormonal. Bloods, red and white low from chem, Ca125 down from 84 post op, to 6.4 now. Was ur first 'sighting' Uterine too? Funnily enough ;-( you sound like a success story for our level, compared to what I've read. I too feel blessed with family but so alone! You must feel so frightened, but take heart from List's wonderful ,'warriorettes', many of whom are on multiple 'go-rounds' and still fighting away, and living life to it's fullest. This is an awful disease but you 'meet' the most accomplished women!

    I live in Israel.

    Sara

    Newbie with recurrence
    Hi, Sara, Thank you for your response. So you are in complete remission now? That's great. I only got a partial remission after 6 chemos, but we are trying 2 more rounds. I don't believe the cell type I have is clear cell. My CA 125 is not elevated and never was.

    Yes, the original cancer I had was uterine. I had the surgery, staging, etc. 10 years ago at which time the cancer was stage 3C (it had gone almost thru the uterine wall & was in lymph nodes).

    I am so glad you are in remission now. Yes, I intend to keep fighting as long as I can.
    Blessings,
    M.J.
  • MJ5
    MJ5 Member Posts: 14
    Kaleena said:

    Dear M.J.
    When I first got

    Dear M.J.

    When I first got diagnosed, I did feel so alone. I am married and have three lovely sons but I felt I didn't want to burden them with more than they could handle. The first week was the worst. I would get up in the middle of the night (the worst time) and think about it and have a full blown panic attack. I then would do what I call the "silent scream" which really made me feel better. It was then that I took a positive turn on the whole thing which turned everything around.

    And it seems that every radio station I was listening to played some form of "sad" song that eventually it got to be funny. I would start to get that sad look on my face and my husband would look at me and then we would just laugh.

    Take a positive approach to the whole thing. I even took piano lessons. There are so many people who have this and we are not alone.

    I was diagnosed with endometrial adenecarcinoma in September of 2005, had staging surgery in October 2005 and last year had a surgery February 2010 for a recurrence. I was originally staged with Grade 2 Stage iiia. During my recent surgery, everything was clear except for one lymph node which had microscopic cells in that they removed.

    Please don't feel lonely. Just think of ways you can help others.

    So, I see you had your cancer for ten years. How did you handle follow ups and tests during that time? I think it is great being NED but also difficult. Its like you don't know what class you are in.

    Ooops. Now I am rambling.

    I hope you are feeling better and not lonely.

    Kathy
    (from Pennsylvania)

    Newbie with recurrence
    Hi, Kathy, thanks for responding to my post. Where was your recurrence that they did surgery on you? How were you diagnosed the 2nd time? How did they find it? Was it just one tumor?

    10 years ago, the standard followup for Endometrial cancer was just a pap and pelvic exam every 6 months, so I had been doing that. I believe the standard now is a PET scan after year 3? Year 1? (not sure). Gyn/oncologist had ordered a PET scan when I started having abdominal and back pain, but insurance refused to approve it, I think because after 10 years everyone kept saying I wasn't having a recurrence. Anyway, doc ordered CT scans, which came back clear. The recurrence was in my lungs, so it never showed up of course.

    What is your followup protocol?

    Yes, I had a lot of fear the first time i had cancer. With the recurrence, I don't have as much fear. Just feel a bit disconnected from everyone, except those with cancer. Not all the time, but just when I need to share my deepest feelings, I don't feel I can be totally authentic.

    What is NED?

    Well, you hang in there too, and I am glad to hear that you are clear.

    M.J.
  • HellieC
    HellieC Member Posts: 524 Member
    MJ5 said:

    Newbie with recurrence
    Hi, Kathy, thanks for responding to my post. Where was your recurrence that they did surgery on you? How were you diagnosed the 2nd time? How did they find it? Was it just one tumor?

    10 years ago, the standard followup for Endometrial cancer was just a pap and pelvic exam every 6 months, so I had been doing that. I believe the standard now is a PET scan after year 3? Year 1? (not sure). Gyn/oncologist had ordered a PET scan when I started having abdominal and back pain, but insurance refused to approve it, I think because after 10 years everyone kept saying I wasn't having a recurrence. Anyway, doc ordered CT scans, which came back clear. The recurrence was in my lungs, so it never showed up of course.

    What is your followup protocol?

    Yes, I had a lot of fear the first time i had cancer. With the recurrence, I don't have as much fear. Just feel a bit disconnected from everyone, except those with cancer. Not all the time, but just when I need to share my deepest feelings, I don't feel I can be totally authentic.

    What is NED?

    Well, you hang in there too, and I am glad to hear that you are clear.

    M.J.

    Hi Ladies - I have 2nd recurrence of endo ca
    I had hysterectomy for atypical hyperplasia in 2001 (no cancer found), was clear until 2008 when recurrence at vaginal vault detected (surprise - cancer recurred when no one had found it first time!), had pelvic radiotherapy, then clear for 2.5 years until July 2010, when 2nd recurrence found again at vaginal vault, pouch of douglas and wrapped around sigmoid colon. Had major surgery to debulk in Aug 2010 and just finished 6 rounds of carbo/taxol to try to zap the microscopic remains on bladder and peritoneum. Mine is "standard" adenocarcinoma (not UPSC). Heaven knows why it just won't give up and die - no one can understand it! First recurrence was Grade 1, second recurrence Grade 2. (This little sucker seems to get stronger and more resilient each time we try to zap it).
    My emotions oscilate between absolute fear and "hell - I'm not having this, up and at 'em" and everything else in between. I live in England and have found this site an enormous source of information and support.
    It doesn't matter what type of ca we have - we are all here supporting each other and sharing information. I bless the day I found such a great group of women.
    Kindest wishes
    Helen
  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    Faith and Hope MJ5
    Hi MJ and others...I read MJ's posting and it hit me in my heart. I had endometrial cancer which traveled into my cervix. 2B. I am post treatment a little more than a year. I also have the emotional lows where I don't think I will ever feel like I did before the diagnosis. Ten years after the diagnosis and getting cancer again is something we all fear. It is a sometimes a very lonely journey because the only people who truly understand what we have dealt with an do deal with are the other women who have and will fight the good fight. Sometimes I think that the American Cancer Society should have a SKYPE connection mechanism. I wonder if anyone actually has used Skype with the other cancer fighters on this discussion board. I also have read postings and posted with tears streaming out of my heart...Praying that the Taxol and Carbo put you into remission again.
    {{{{HUG}}}}
    Lori
  • MJ5
    MJ5 Member Posts: 14
    HellieC said:

    Hi Ladies - I have 2nd recurrence of endo ca
    I had hysterectomy for atypical hyperplasia in 2001 (no cancer found), was clear until 2008 when recurrence at vaginal vault detected (surprise - cancer recurred when no one had found it first time!), had pelvic radiotherapy, then clear for 2.5 years until July 2010, when 2nd recurrence found again at vaginal vault, pouch of douglas and wrapped around sigmoid colon. Had major surgery to debulk in Aug 2010 and just finished 6 rounds of carbo/taxol to try to zap the microscopic remains on bladder and peritoneum. Mine is "standard" adenocarcinoma (not UPSC). Heaven knows why it just won't give up and die - no one can understand it! First recurrence was Grade 1, second recurrence Grade 2. (This little sucker seems to get stronger and more resilient each time we try to zap it).
    My emotions oscilate between absolute fear and "hell - I'm not having this, up and at 'em" and everything else in between. I live in England and have found this site an enormous source of information and support.
    It doesn't matter what type of ca we have - we are all here supporting each other and sharing information. I bless the day I found such a great group of women.
    Kindest wishes
    Helen

    Hi, Helen
    Hi, Helen, so nice to hear from you, although I am so sorry to hear you are going through this too. It is very touching to read posts like yours. I know what you mean when you say ca seems to get stronger every time it is zapped. Mine was Grade 2, now grade 3. I do seem to have a little more hope than I did. I think I just kind of gave up, but now I am thinking there are folks out there who have beat stage 4 cancer for a long time, so why can't I be one of them?

    Have you been on Megace? I was on Megace with my first occurrence, but my oncologist now is a bit reluctant to put me on it. I think I am going to push him for it, because I just completed chemo (8 rounds). I hate doing nothing. I am looking for a naturopathic treatments now. I realize they have their limits once cancer is this advanced, but I still would like to try something.

    I see a lot of clinical trials (mostly in the U.S.) for endo. ca. A lot of them are biological agents. I amj hoping that we can keep the cancer under control until maybe one of these biologic agents show good results.

    Thank you for your kind words. And best of luck to you.

    M.J.
  • MJ5
    MJ5 Member Posts: 14

    Faith and Hope MJ5
    Hi MJ and others...I read MJ's posting and it hit me in my heart. I had endometrial cancer which traveled into my cervix. 2B. I am post treatment a little more than a year. I also have the emotional lows where I don't think I will ever feel like I did before the diagnosis. Ten years after the diagnosis and getting cancer again is something we all fear. It is a sometimes a very lonely journey because the only people who truly understand what we have dealt with an do deal with are the other women who have and will fight the good fight. Sometimes I think that the American Cancer Society should have a SKYPE connection mechanism. I wonder if anyone actually has used Skype with the other cancer fighters on this discussion board. I also have read postings and posted with tears streaming out of my heart...Praying that the Taxol and Carbo put you into remission again.
    {{{{HUG}}}}
    Lori

    Hi, Lori
    Hugs to you too! You are a sweetheart. I freaked out when I met people who had recurrences the first time I had cancer. I am glad you are only Stage 2B, although I realize even Stage 1 can have a recurrence.

    I always feel better after I cry. It seems I spend too much time trying to talk myself out of feeling what I am feeling, which only makes the feelings stronger! Once I cry, and read posts from people like you, its easier for me to live in the moment and enjoy the day.

    I send you lots of healing thoughts and prayers, Lori.

    M.J.
  • HellieC
    HellieC Member Posts: 524 Member
    MJ5 said:

    Hi, Helen
    Hi, Helen, so nice to hear from you, although I am so sorry to hear you are going through this too. It is very touching to read posts like yours. I know what you mean when you say ca seems to get stronger every time it is zapped. Mine was Grade 2, now grade 3. I do seem to have a little more hope than I did. I think I just kind of gave up, but now I am thinking there are folks out there who have beat stage 4 cancer for a long time, so why can't I be one of them?

    Have you been on Megace? I was on Megace with my first occurrence, but my oncologist now is a bit reluctant to put me on it. I think I am going to push him for it, because I just completed chemo (8 rounds). I hate doing nothing. I am looking for a naturopathic treatments now. I realize they have their limits once cancer is this advanced, but I still would like to try something.

    I see a lot of clinical trials (mostly in the U.S.) for endo. ca. A lot of them are biological agents. I amj hoping that we can keep the cancer under control until maybe one of these biologic agents show good results.

    Thank you for your kind words. And best of luck to you.

    M.J.

    Megace
    Hi MJ
    No - I'm not on Megace but I will be asking my consultant about it when I see her on 9th March. In the UK, they don't seem to use it if you're in remission, but it comes into play if you get distant mets. So far, my recurrences have been all pelvic, so I am hoping my latest CT scan will not show anything further afield.
    Like you, I am hoping that we can kep everything under control until a magic bullet comes along!
    Every hopeful!
    Helen
  • Kaleena
    Kaleena Member Posts: 2,081 Member
    MJ5 said:

    Hi, Lori
    Hugs to you too! You are a sweetheart. I freaked out when I met people who had recurrences the first time I had cancer. I am glad you are only Stage 2B, although I realize even Stage 1 can have a recurrence.

    I always feel better after I cry. It seems I spend too much time trying to talk myself out of feeling what I am feeling, which only makes the feelings stronger! Once I cry, and read posts from people like you, its easier for me to live in the moment and enjoy the day.

    I send you lots of healing thoughts and prayers, Lori.

    M.J.

    Hello M.J., Helen, Lori and
    Hello M.J., Helen, Lori and Sara:

    I haven't been on for a bit, so in response to M.J.'s question on what is NED it means "No Evidence of Disease".

    M.J., you had mentioned something about feeling lonely. I know what you mean. My story is not typical. I originally had my hsterectomy i 2005 due to severe endometriosis. I questioned about cancer and about having a scan prior and they said it wasn't necessary. Well when I went back for my follow up after my hysterectomy is when I was told the news and then referred to a gyn/onc. I had to have another surgery a month later for staging. They didn't find anything else, washing clear, etc., and was staged at Grade 2, Stage ii/iiia. Had a port put in and did the Taxol/Carbo treatment. However, I was allergic to taxol and so they switched to Gemzar. After chemo was done, I had 3 brachy therapies. I then followed up with 6 month check ups and CT scans. About three years being NED, I started to have pain which I thought might be a hemmeroid. The spot had always showed up on the CT scan since my initial surgery, but believed it was scar tissue.

    My original doctor retired so for a year I was seeing a new doctor who could care less and never even physically examined me (always had his intern). I had questioned a CT Scan because it said I was 89 years old when at the time I was 47. So I had them "redo" the report. Originally when the doctor reviewed the report it was fine, but when he got the redo he called me (Christmas Eve night) to say I should have a CT Scan done in 5 months. Nice huh? I told him the report he got was the same one he told me not to worry about.

    Long story short, in July of 2009 I got another CT scan. The doctor's office called me to say that there was a recurrence and had to come in for a meeting. I scheduled the meeting but instead of meeting with the doctor, I had to wait for an hour (7:00 a.m. was my appointment). I had to wait until they found my original chart. Hmm. Didn't even review it. The "fellow" working there came in while my dr was looking for my records. We asked him to show us the recurrence. He couldn't find it. Then the dr came in and for the first time did the internal and said there it is and it is in a touch spot.

    So I got dressed and we had to meet with him in his office. First thing he said was that I had to start chemo immediately, he didn't care that I was allergic to taxol he could give me something to combat the reaction, then I would have surgery (which would result in me having a colostomy) and then more chemo, surgery, etc. He then wanted me to have a PET Scan and get a biopsy. I felt he seemed "happy" because he finally got to go stuff on me so my husband and I left.

    We got a PET Scan two days later (which was negative). The doctor wanted me to have a biopsy on Monday because he was going on vacation Tuesday. I did not go. I was seeking another opinion. When I picked up my records he wrote Patient seeking help elsewhere and closed my records. Anyway, new doctor (in another hospital) did biopsy in October 2009 which came back positive. So he sends me for a CT Scan with contrast. Again, comes back negative. So they send me for an MRI. Again, negative. His intern calls me and wanted to me start radiation right away. I said no, I wanted a meeting with the doctor. We met with the doctor and he says he couldn't operate and gave me to his partner who also was with my old doctor. I set up a meeting with this doctor and my radiologist. The doctor stood outside the radiologists door at my meeting asking what do we have in there after being one-half hour late. He comes in, does exam and says I can't operate it is attached to the wall. It would be a 10 hour surgery and I won't do it. He gets up and leaves. My radiation doctor says we could start the radiation program but once he radiates that area, if it comes back he could not radiate the area again. So we left again.

    Went out of state. Gathered all my slides, etc. and met with new doctor. They reread the biopsy slides and confirmed it. He examined me and said he would meet with a team of doctors to decide my treatment, options, etc. He called and indicate they believe they could get the tumor and it would be a short surgery. So I was scheduled in January of 2010 for surgery. The night before surgery after doing the prep I was notifyied that my doctor was hospitalized! Yikes! Postponed surgery to February. Successful surgery. They got it all, no colostomy! All initial findings were negative.

    My one lymph node had microscopic cells. I decided not to do anything yet. I have had two PET Scans since then and all is good. Although I still have my port. No one wan't to take it out. I was getting in flushed every month but now the hospitals where I live won't do it because my doctor is out of state even if I have a prescription. Nice, huh.

    If it comes back in the same area, there is a change that it could effect my left leg and walking. But after a year since my surgery, I feel great. Also, at the same time the repaired my HUGH hernia from my initial surgery back in 2005. Now I am not lopsided anymore!

    Sorry about the long story. My best to all of you!

    Kathy
  • Kaleena
    Kaleena Member Posts: 2,081 Member
    Kaleena said:

    Hello M.J., Helen, Lori and
    Hello M.J., Helen, Lori and Sara:

    I haven't been on for a bit, so in response to M.J.'s question on what is NED it means "No Evidence of Disease".

    M.J., you had mentioned something about feeling lonely. I know what you mean. My story is not typical. I originally had my hsterectomy i 2005 due to severe endometriosis. I questioned about cancer and about having a scan prior and they said it wasn't necessary. Well when I went back for my follow up after my hysterectomy is when I was told the news and then referred to a gyn/onc. I had to have another surgery a month later for staging. They didn't find anything else, washing clear, etc., and was staged at Grade 2, Stage ii/iiia. Had a port put in and did the Taxol/Carbo treatment. However, I was allergic to taxol and so they switched to Gemzar. After chemo was done, I had 3 brachy therapies. I then followed up with 6 month check ups and CT scans. About three years being NED, I started to have pain which I thought might be a hemmeroid. The spot had always showed up on the CT scan since my initial surgery, but believed it was scar tissue.

    My original doctor retired so for a year I was seeing a new doctor who could care less and never even physically examined me (always had his intern). I had questioned a CT Scan because it said I was 89 years old when at the time I was 47. So I had them "redo" the report. Originally when the doctor reviewed the report it was fine, but when he got the redo he called me (Christmas Eve night) to say I should have a CT Scan done in 5 months. Nice huh? I told him the report he got was the same one he told me not to worry about.

    Long story short, in July of 2009 I got another CT scan. The doctor's office called me to say that there was a recurrence and had to come in for a meeting. I scheduled the meeting but instead of meeting with the doctor, I had to wait for an hour (7:00 a.m. was my appointment). I had to wait until they found my original chart. Hmm. Didn't even review it. The "fellow" working there came in while my dr was looking for my records. We asked him to show us the recurrence. He couldn't find it. Then the dr came in and for the first time did the internal and said there it is and it is in a touch spot.

    So I got dressed and we had to meet with him in his office. First thing he said was that I had to start chemo immediately, he didn't care that I was allergic to taxol he could give me something to combat the reaction, then I would have surgery (which would result in me having a colostomy) and then more chemo, surgery, etc. He then wanted me to have a PET Scan and get a biopsy. I felt he seemed "happy" because he finally got to go stuff on me so my husband and I left.

    We got a PET Scan two days later (which was negative). The doctor wanted me to have a biopsy on Monday because he was going on vacation Tuesday. I did not go. I was seeking another opinion. When I picked up my records he wrote Patient seeking help elsewhere and closed my records. Anyway, new doctor (in another hospital) did biopsy in October 2009 which came back positive. So he sends me for a CT Scan with contrast. Again, comes back negative. So they send me for an MRI. Again, negative. His intern calls me and wanted to me start radiation right away. I said no, I wanted a meeting with the doctor. We met with the doctor and he says he couldn't operate and gave me to his partner who also was with my old doctor. I set up a meeting with this doctor and my radiologist. The doctor stood outside the radiologists door at my meeting asking what do we have in there after being one-half hour late. He comes in, does exam and says I can't operate it is attached to the wall. It would be a 10 hour surgery and I won't do it. He gets up and leaves. My radiation doctor says we could start the radiation program but once he radiates that area, if it comes back he could not radiate the area again. So we left again.

    Went out of state. Gathered all my slides, etc. and met with new doctor. They reread the biopsy slides and confirmed it. He examined me and said he would meet with a team of doctors to decide my treatment, options, etc. He called and indicate they believe they could get the tumor and it would be a short surgery. So I was scheduled in January of 2010 for surgery. The night before surgery after doing the prep I was notifyied that my doctor was hospitalized! Yikes! Postponed surgery to February. Successful surgery. They got it all, no colostomy! All initial findings were negative.

    My one lymph node had microscopic cells. I decided not to do anything yet. I have had two PET Scans since then and all is good. Although I still have my port. No one wan't to take it out. I was getting in flushed every month but now the hospitals where I live won't do it because my doctor is out of state even if I have a prescription. Nice, huh.

    If it comes back in the same area, there is a change that it could effect my left leg and walking. But after a year since my surgery, I feel great. Also, at the same time the repaired my HUGH hernia from my initial surgery back in 2005. Now I am not lopsided anymore!

    Sorry about the long story. My best to all of you!

    Kathy

    Have a question.
    Did any of you ladies during your time before a recurrence felt like when you went to the doctors that you just went through the motions? Feel kind of lonely because you are NED? I mean like what do you do? You are not in treatment, although you feel all of the anxiety associated with hit. Always feeling like you have to look over your shoulder.

    How about this? My family and I are in the process of buying a house. It created great stress for me which I didn't share with my husband initially. Finally, I said what if it comes back? I didn't want to cause any stress or stuff like that. ALthough my PET Scans in June and November were negative, I was to have another one in six months which would be in April. The NP at the office won't schedule me for one saying I probably don't need one.

    Then I started feeling a pain in my back below my rib cage and lower back. Of course, I freaked. Then after walking with my friend for 2 miles, I had a little spot of blood which I believe was from my hemmorroid. I called the doctor's office but the NP didn't seemed concern and said to go to my General Practioner.

    We got a new mattress and my back pain went away. I have had no more spotting when I wipe.

    The move is a good move. Financially it is a good thing. We own our own business and economically it is a smart move. After talking all of this over with my husband, I feel less stress. I should have discussed this all with him before we even started to look!

    I see the doctor in June. I keep getting pushed back.

    Thank you for letting me share this with you.

    Kathy
  • lkchapman
    lkchapman Member Posts: 106
    Kaleena said:

    Have a question.
    Did any of you ladies during your time before a recurrence felt like when you went to the doctors that you just went through the motions? Feel kind of lonely because you are NED? I mean like what do you do? You are not in treatment, although you feel all of the anxiety associated with hit. Always feeling like you have to look over your shoulder.

    How about this? My family and I are in the process of buying a house. It created great stress for me which I didn't share with my husband initially. Finally, I said what if it comes back? I didn't want to cause any stress or stuff like that. ALthough my PET Scans in June and November were negative, I was to have another one in six months which would be in April. The NP at the office won't schedule me for one saying I probably don't need one.

    Then I started feeling a pain in my back below my rib cage and lower back. Of course, I freaked. Then after walking with my friend for 2 miles, I had a little spot of blood which I believe was from my hemmorroid. I called the doctor's office but the NP didn't seemed concern and said to go to my General Practioner.

    We got a new mattress and my back pain went away. I have had no more spotting when I wipe.

    The move is a good move. Financially it is a good thing. We own our own business and economically it is a smart move. After talking all of this over with my husband, I feel less stress. I should have discussed this all with him before we even started to look!

    I see the doctor in June. I keep getting pushed back.

    Thank you for letting me share this with you.

    Kathy

    I know exactly how you feel!
    Dear Kathy,
    Yes, I feel very lonely. I haven't had a recurrence, but with a stage IIIc UPSC diagnosis (finished adjuvant treatment in August 2009)I can't help but think it is right around the corner. While I was in treatment my doctor and his staff were great, but now when I go in for my checkup it's like they can't get me out of there fast enough! I need to get up the courage to tell them the trouble I am having with this as I am sure they would refer me to someone for help, but I have difficultly talking about it. What makes it worse is that I work for the same cancer hospital at which I am a patient. I code medical records for them and I read about cancer and it's devastating affect on people day-in and day-out. They are a really big hospital and there are so many of us out there suffering. Sometimes I think that I just can't sit down at my computer one more day and read about it. I hate my job!
    I have to remind myself everything happens for a reason. I would probably be dead if I didn't work where I work, because I was coding a patient's chart who was having the same symptoms I was having. My obgyn kept telling me my symptoms were the normal symptoms of fibroids for 5 years! I would get ultra sounds and paps. Finally I had a patient who had endometrial cancer with the same symptoms so I went in and insisted on a biopsy. My doc was flabbergasted! She couldn't believe it because I didn't fit the stereotype.

    Enough of my rant. It's good that you are buying a house, it will surely help you move forward with your life. We must always keep planning for our future! We will have one!

    With much understanding.
    Laura
  • Kaleena
    Kaleena Member Posts: 2,081 Member
    lkchapman said:

    I know exactly how you feel!
    Dear Kathy,
    Yes, I feel very lonely. I haven't had a recurrence, but with a stage IIIc UPSC diagnosis (finished adjuvant treatment in August 2009)I can't help but think it is right around the corner. While I was in treatment my doctor and his staff were great, but now when I go in for my checkup it's like they can't get me out of there fast enough! I need to get up the courage to tell them the trouble I am having with this as I am sure they would refer me to someone for help, but I have difficultly talking about it. What makes it worse is that I work for the same cancer hospital at which I am a patient. I code medical records for them and I read about cancer and it's devastating affect on people day-in and day-out. They are a really big hospital and there are so many of us out there suffering. Sometimes I think that I just can't sit down at my computer one more day and read about it. I hate my job!
    I have to remind myself everything happens for a reason. I would probably be dead if I didn't work where I work, because I was coding a patient's chart who was having the same symptoms I was having. My obgyn kept telling me my symptoms were the normal symptoms of fibroids for 5 years! I would get ultra sounds and paps. Finally I had a patient who had endometrial cancer with the same symptoms so I went in and insisted on a biopsy. My doc was flabbergasted! She couldn't believe it because I didn't fit the stereotype.

    Enough of my rant. It's good that you are buying a house, it will surely help you move forward with your life. We must always keep planning for our future! We will have one!

    With much understanding.
    Laura

    Thanks, Laura
    Thanks for your reply Laura. I too knew I had something and kept going to the doctor. I had a colonoscopy from my GP, then I went to gyn. Had a laparoscopy and said I just had severe endometrosis and suggested a hysterectomy. It wasn't until after the path report came back that cancer was detected. The doctors were surprised. I also had a gyn/onc assist with the original hysterectomy in case a bowel or bladder was nicked and he didn't even see anything.

    Well anyway that was back in 2005. I will enjoy moving into the new house. Thanks for the kind words. Every now and then we need a little boost!

    Kathy
  • sleem
    sleem Member Posts: 92
    We are here
    I do have UPSC. Yet, still feel like sisters. Hold firm... and know you have people out here
  • Sunny777
    Sunny777 Member Posts: 7
    Kaleena said:

    Have a question.
    Did any of you ladies during your time before a recurrence felt like when you went to the doctors that you just went through the motions? Feel kind of lonely because you are NED? I mean like what do you do? You are not in treatment, although you feel all of the anxiety associated with hit. Always feeling like you have to look over your shoulder.

    How about this? My family and I are in the process of buying a house. It created great stress for me which I didn't share with my husband initially. Finally, I said what if it comes back? I didn't want to cause any stress or stuff like that. ALthough my PET Scans in June and November were negative, I was to have another one in six months which would be in April. The NP at the office won't schedule me for one saying I probably don't need one.

    Then I started feeling a pain in my back below my rib cage and lower back. Of course, I freaked. Then after walking with my friend for 2 miles, I had a little spot of blood which I believe was from my hemmorroid. I called the doctor's office but the NP didn't seemed concern and said to go to my General Practioner.

    We got a new mattress and my back pain went away. I have had no more spotting when I wipe.

    The move is a good move. Financially it is a good thing. We own our own business and economically it is a smart move. After talking all of this over with my husband, I feel less stress. I should have discussed this all with him before we even started to look!

    I see the doctor in June. I keep getting pushed back.

    Thank you for letting me share this with you.

    Kathy

    Sometimes I just feel confused
    I was diagnosised with endometrial adenocarcinoma stage I in November. They took 46 lymph nodes and they were all clear. I'm so thankful it was all good. But sometimes I feel like everyone tells me it's over and forget about it. I try to do that, but I still feel afraid some of the time. I don't feel like I used to, I get tired so easily. Sometimes I feel like I shouldn't talk about it because I have a good prognosis. So I jsut feel confused and alone. I just needed to say this. Thanks for listening.
  • HellieC
    HellieC Member Posts: 524 Member
    Sunny777 said:

    Sometimes I just feel confused
    I was diagnosised with endometrial adenocarcinoma stage I in November. They took 46 lymph nodes and they were all clear. I'm so thankful it was all good. But sometimes I feel like everyone tells me it's over and forget about it. I try to do that, but I still feel afraid some of the time. I don't feel like I used to, I get tired so easily. Sometimes I feel like I shouldn't talk about it because I have a good prognosis. So I jsut feel confused and alone. I just needed to say this. Thanks for listening.

    Hang on in there
    Feeling confused or frightened after a cancer diagnosis, regardless of grade or stage or prognosis, is quite normal and it doesn't always go away just because of successful surgery! I know how you feel - after my hysterectomy in 2001, friends and family all wanted to move on and forget it, but for us, it will always be there.
    We're here for you any time you want to say anything to people who understand.
    Thinking of you
    Helen
  • california_artist
    california_artist Member Posts: 816 Member
    Sunny777 said:

    Sometimes I just feel confused
    I was diagnosised with endometrial adenocarcinoma stage I in November. They took 46 lymph nodes and they were all clear. I'm so thankful it was all good. But sometimes I feel like everyone tells me it's over and forget about it. I try to do that, but I still feel afraid some of the time. I don't feel like I used to, I get tired so easily. Sometimes I feel like I shouldn't talk about it because I have a good prognosis. So I jsut feel confused and alone. I just needed to say this. Thanks for listening.

    Sunny777 I don't think the 'it's over and forget about it' is th
    the best advice. lovely name by the way

    Ah, here's the thing, and i've said this many times before in many different sections, There is a reason that cancer was able to get a hold in your body. i know that doctors tell you that it was nothing you did or could have prevented. But what if that's not right. Also, that gives you a helpless bent. you know what i mean. my suggestion is quite simple. Take a good hard look at your lifestyle and the foods you eat, the amount of stress you are under, the things that are good in your life and kinda think about in relation to how cancer thrives. See if there aren't things you could do to make your body a less friendly place for cancer. i fear that if there are no changes made, it is likely that the same thing will happen again.

    Take charge of your life. if you have to tell people when things stress you out and ask them not to do those things for the simple fact that your immune system can only do one thing at a time, sorta, and if it's divereted coping with stress, it can't fight cancer as well, you are helping your body. Exercise and sing.

    claudia
  • Sunny777
    Sunny777 Member Posts: 7

    Sunny777 I don't think the 'it's over and forget about it' is th
    the best advice. lovely name by the way

    Ah, here's the thing, and i've said this many times before in many different sections, There is a reason that cancer was able to get a hold in your body. i know that doctors tell you that it was nothing you did or could have prevented. But what if that's not right. Also, that gives you a helpless bent. you know what i mean. my suggestion is quite simple. Take a good hard look at your lifestyle and the foods you eat, the amount of stress you are under, the things that are good in your life and kinda think about in relation to how cancer thrives. See if there aren't things you could do to make your body a less friendly place for cancer. i fear that if there are no changes made, it is likely that the same thing will happen again.

    Take charge of your life. if you have to tell people when things stress you out and ask them not to do those things for the simple fact that your immune system can only do one thing at a time, sorta, and if it's divereted coping with stress, it can't fight cancer as well, you are helping your body. Exercise and sing.

    claudia

    Thanks
    I've been trying to make changes to my lifestyle, but I do struggle sometimes. I'm a workaholic and it's been hard to back off the amount of hours I work. I do have a supportive supervisor and she's pushing me out of the office. I'm going to keep working at keeping down stress. I'm getting back to exercising now that I'm starting to fill a little better. Thanks to all for your input and encouragement
  • MJ5
    MJ5 Member Posts: 14
    Kaleena said:

    Hello M.J., Helen, Lori and
    Hello M.J., Helen, Lori and Sara:

    I haven't been on for a bit, so in response to M.J.'s question on what is NED it means "No Evidence of Disease".

    M.J., you had mentioned something about feeling lonely. I know what you mean. My story is not typical. I originally had my hsterectomy i 2005 due to severe endometriosis. I questioned about cancer and about having a scan prior and they said it wasn't necessary. Well when I went back for my follow up after my hysterectomy is when I was told the news and then referred to a gyn/onc. I had to have another surgery a month later for staging. They didn't find anything else, washing clear, etc., and was staged at Grade 2, Stage ii/iiia. Had a port put in and did the Taxol/Carbo treatment. However, I was allergic to taxol and so they switched to Gemzar. After chemo was done, I had 3 brachy therapies. I then followed up with 6 month check ups and CT scans. About three years being NED, I started to have pain which I thought might be a hemmeroid. The spot had always showed up on the CT scan since my initial surgery, but believed it was scar tissue.

    My original doctor retired so for a year I was seeing a new doctor who could care less and never even physically examined me (always had his intern). I had questioned a CT Scan because it said I was 89 years old when at the time I was 47. So I had them "redo" the report. Originally when the doctor reviewed the report it was fine, but when he got the redo he called me (Christmas Eve night) to say I should have a CT Scan done in 5 months. Nice huh? I told him the report he got was the same one he told me not to worry about.

    Long story short, in July of 2009 I got another CT scan. The doctor's office called me to say that there was a recurrence and had to come in for a meeting. I scheduled the meeting but instead of meeting with the doctor, I had to wait for an hour (7:00 a.m. was my appointment). I had to wait until they found my original chart. Hmm. Didn't even review it. The "fellow" working there came in while my dr was looking for my records. We asked him to show us the recurrence. He couldn't find it. Then the dr came in and for the first time did the internal and said there it is and it is in a touch spot.

    So I got dressed and we had to meet with him in his office. First thing he said was that I had to start chemo immediately, he didn't care that I was allergic to taxol he could give me something to combat the reaction, then I would have surgery (which would result in me having a colostomy) and then more chemo, surgery, etc. He then wanted me to have a PET Scan and get a biopsy. I felt he seemed "happy" because he finally got to go stuff on me so my husband and I left.

    We got a PET Scan two days later (which was negative). The doctor wanted me to have a biopsy on Monday because he was going on vacation Tuesday. I did not go. I was seeking another opinion. When I picked up my records he wrote Patient seeking help elsewhere and closed my records. Anyway, new doctor (in another hospital) did biopsy in October 2009 which came back positive. So he sends me for a CT Scan with contrast. Again, comes back negative. So they send me for an MRI. Again, negative. His intern calls me and wanted to me start radiation right away. I said no, I wanted a meeting with the doctor. We met with the doctor and he says he couldn't operate and gave me to his partner who also was with my old doctor. I set up a meeting with this doctor and my radiologist. The doctor stood outside the radiologists door at my meeting asking what do we have in there after being one-half hour late. He comes in, does exam and says I can't operate it is attached to the wall. It would be a 10 hour surgery and I won't do it. He gets up and leaves. My radiation doctor says we could start the radiation program but once he radiates that area, if it comes back he could not radiate the area again. So we left again.

    Went out of state. Gathered all my slides, etc. and met with new doctor. They reread the biopsy slides and confirmed it. He examined me and said he would meet with a team of doctors to decide my treatment, options, etc. He called and indicate they believe they could get the tumor and it would be a short surgery. So I was scheduled in January of 2010 for surgery. The night before surgery after doing the prep I was notifyied that my doctor was hospitalized! Yikes! Postponed surgery to February. Successful surgery. They got it all, no colostomy! All initial findings were negative.

    My one lymph node had microscopic cells. I decided not to do anything yet. I have had two PET Scans since then and all is good. Although I still have my port. No one wan't to take it out. I was getting in flushed every month but now the hospitals where I live won't do it because my doctor is out of state even if I have a prescription. Nice, huh.

    If it comes back in the same area, there is a change that it could effect my left leg and walking. But after a year since my surgery, I feel great. Also, at the same time the repaired my HUGH hernia from my initial surgery back in 2005. Now I am not lopsided anymore!

    Sorry about the long story. My best to all of you!

    Kathy

    Hi, Kathy
    Wow, what a merry-go-round you have been on! You must be pretty strong to get through all that. I have to say, I find going thru the medical professionals (docs, nurses and office staff ) and thru the insurance maze has been harder than the treatement itself. But your story tops mine, that's for sure. I tend be hyper-vigilant at times, because mistakes were made with me. I wish I could just sit back and trust everything that I'm told, but I can't.

    I am glad the surgery was successful. It sounds like you made a wise choice to go out of state. I can't believe you can't get someone to flush your port now. It's things like that I have such a hard time with.

    Thank you for your story! I am glad to get to "meet" lovely women like you!
  • MJ5
    MJ5 Member Posts: 14
    Sunny777 said:

    Sometimes I just feel confused
    I was diagnosised with endometrial adenocarcinoma stage I in November. They took 46 lymph nodes and they were all clear. I'm so thankful it was all good. But sometimes I feel like everyone tells me it's over and forget about it. I try to do that, but I still feel afraid some of the time. I don't feel like I used to, I get tired so easily. Sometimes I feel like I shouldn't talk about it because I have a good prognosis. So I jsut feel confused and alone. I just needed to say this. Thanks for listening.

    Hi, Sunny,

    My heart goes out to you when you say "I feel like I shouldn't talk about it because I have a good prognosis". It doesn't matter. Really, pain is pain. Cancer is such a scary word. I don't understand why someone who hasn't gone thru what you have gone thru would tell you to "forget about it". But they said the same sort of things to me too.

    The fear will subside over time. I think denying the fear is more damaging than expressing it, so I'm glad you could state your truth. Also, I was exhausted for a long time after my hysterectomy. I think surgery was really hard on my body. More so than chemo. Maybe the psychological toll contributed to the exhaustion as well. Well, not to mention the relentless hot flashes that kept me up all night!

    You mentioned elsewhere that you are a workaholic. I am also. I am not working right now, thank goodness. I know things are going to get easier for you.

    Hugs, MJ