Stage 1 well-differentiated adenocarcinoma

April
April Member Posts: 34
in Uterine/Endometrial Cancer #1
Has anyone out there had a recurrence of this type of cancer? I had a complete hysterectomy in February. My surgeon was exhausted by the time my turn came up on the day of surgery. I asked her if she was too tired and would like to reschedule because she looked really bad. She declined and proceeded through. Then she left town for about a month and left her patients to deal with the staff but not with a surgeon. I ended up in the emergency room where a no contrasted ct scan was performed. They found what they said could be residual ovary on my right side. I called the office and wEnt in. The nurse practitioner said it was probably just residual surgical fluid. I continue to have pain on the right side and into the leg. At the three month checkup I was told everything looked fine. Then the pap smear showed atypical cells. The surgeon said they probably were the result of the sudden cessation of estrogen.

I have my 6 month follow up next week and had a ct scan today that she wrote a script for to humor me. I called to report that I had some spotting last night. The person on phone duty asked whether it was fresh blood. It wasn't. She asked if I had been working out more than usual. I had. She indicated that it probably wasn't anything to be too concerned about since the blood wasn't fresh and I had just begun a new exercise program. I've reported pain on my right side since th surgery and it extends intomy right leg. I've had more than one urinary tract infection since surgery. Things just don't feel right. I feel like the surgeon did the part she enjoyed and now the follow-up isn't interesting enough for her. There is someone else in her practice that came highly recommended. I don't know if they'd let me switch doctors, but I don't have a good feeling about this one.

Comments

  • Michaelynn
    Michaelynn Member Posts: 85 Member
    #2
    I would ask to switch
    I would ask to switch. My husband has done that before and they had no problem switching him to someone else. In his case we had a foreign doctor that we had a hard time understanding what he said. You might consider a second opinion and a new doctor. It doesn't seem like your getting proper care. I would not want to jeopardize my health by waiting any longer. Its your body and you should have the last say. Let us know when you get to the bottom of whats causing all your pain.
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #3
    April:
    Did you have a
    April:

    Did you have a gyn/oncologist perform your hysterectomy or just a gyne surgeon? You may want to have a check up with a gyne/oncologist or if you have one at least seek out a second opinion. If you are seeking a second opinion, get someone not associated with the same group you are currently in.

    You didn't indicate whether or not you received any treatment? chemo? brachytherapy? If you had brachytherapy, that can cause atypical cells on a PAP smear. Other things can cause it too like using vaginal creams a day before your PAP smear.

    Did your surgery consist of removing your appendix and omentum too? what about lymph nodes?
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #4
    Kaleena said:

    April:
    Did you have a
    April:

    Did you have a gyn/oncologist perform your hysterectomy or just a gyne surgeon? You may want to have a check up with a gyne/oncologist or if you have one at least seek out a second opinion. If you are seeking a second opinion, get someone not associated with the same group you are currently in.

    You didn't indicate whether or not you received any treatment? chemo? brachytherapy? If you had brachytherapy, that can cause atypical cells on a PAP smear. Other things can cause it too like using vaginal creams a day before your PAP smear.

    Did your surgery consist of removing your appendix and omentum too? what about lymph nodes?

    but it does happen. That's why we have follow up exams and Pap smears. I was also Stage 1a, Grade 1 endometroid adenocarcinoma and was told I had only a 5% chance of recurrence, but I still have follow-ups because it CAN happen. IF it recurs, they said it typically happens in the first 2 years and at the site of the vaginal cuff which is why they do a Pap smear. That being said, there have been recurrences amongst women on this board longer than 2 years and at other sites, so basically it can do whatever it wants and there is no guarantee that a pesky cell wasn't hiding out somewhere at the time of surgery. But the majority of women at this stage, grade and type of cancer, are cured (yes, they use that word) by surgery alone.

    It sounds like your questions and concerns regarding your health are not being dealt with satisfactorily and that's not acceptable. As Kaleena asks, did a gynecologic oncologist perform your surgery? That's really important and it's important that you're followed by one. I probably bore mine to death with just another routine exam, but he's been in practice for over 20 years and I'm sure he has seen a recurrence or two and knows how important it is to keep a check on all his patients, no matter how straightforward things may seem. While I absolutely hate my visits, I always feel so light and comfortable when I leave because I believe I'm being taken seriously. If you don't feel that way, you should switch docs. They're used to it!

    Write down all your questions prior to your appointment next week and take someone with you for another set of ears. Glad you're getting that CT scan and hope it will put your mind at ease.

    Oh, about the bleeding . . while 6 months seems like an awfully long time, my vaginal cuff took at least 3 months to completely heal, maybe 4 months. No one seemed particularly worried about it but me.

    Best wishes,
    Suzanne
  • grandmathree
    grandmathree Member Posts: 2
    #5
    Double Whammy said:

    but it does happen. That's why we have follow up exams and Pap smears. I was also Stage 1a, Grade 1 endometroid adenocarcinoma and was told I had only a 5% chance of recurrence, but I still have follow-ups because it CAN happen. IF it recurs, they said it typically happens in the first 2 years and at the site of the vaginal cuff which is why they do a Pap smear. That being said, there have been recurrences amongst women on this board longer than 2 years and at other sites, so basically it can do whatever it wants and there is no guarantee that a pesky cell wasn't hiding out somewhere at the time of surgery. But the majority of women at this stage, grade and type of cancer, are cured (yes, they use that word) by surgery alone.

    It sounds like your questions and concerns regarding your health are not being dealt with satisfactorily and that's not acceptable. As Kaleena asks, did a gynecologic oncologist perform your surgery? That's really important and it's important that you're followed by one. I probably bore mine to death with just another routine exam, but he's been in practice for over 20 years and I'm sure he has seen a recurrence or two and knows how important it is to keep a check on all his patients, no matter how straightforward things may seem. While I absolutely hate my visits, I always feel so light and comfortable when I leave because I believe I'm being taken seriously. If you don't feel that way, you should switch docs. They're used to it!

    Write down all your questions prior to your appointment next week and take someone with you for another set of ears. Glad you're getting that CT scan and hope it will put your mind at ease.

    Oh, about the bleeding . . while 6 months seems like an awfully long time, my vaginal cuff took at least 3 months to completely heal, maybe 4 months. No one seemed particularly worried about it but me.

    Best wishes,
    Suzanne

    Hi Suzanne, I am trying to find some support since my surgery..I had everything removed in June and have had my six week check-up..First I was told that I had grade 1 but then after the surgery it was upped to grade 3..now because of that I am advised to have both chemo and radiation... I am going for a second opinion because after reading about all the problems other women have had from the treatments I am terrified to do any of them.

    I am trying to get into a chat room since I feel like I am in a black hole and so alone.

    I am so afraid to get the second opinion ....I was told it was contained in the wall 5% only but I am so scared they will say they found more in other organs.

    It seems like there will never be anything sure again in my life except 'cancer'...

    I am sooooo afraid.
  • grandmathree
    grandmathree Member Posts: 2
    #6
    Double Whammy said:

    but it does happen. That's why we have follow up exams and Pap smears. I was also Stage 1a, Grade 1 endometroid adenocarcinoma and was told I had only a 5% chance of recurrence, but I still have follow-ups because it CAN happen. IF it recurs, they said it typically happens in the first 2 years and at the site of the vaginal cuff which is why they do a Pap smear. That being said, there have been recurrences amongst women on this board longer than 2 years and at other sites, so basically it can do whatever it wants and there is no guarantee that a pesky cell wasn't hiding out somewhere at the time of surgery. But the majority of women at this stage, grade and type of cancer, are cured (yes, they use that word) by surgery alone.

    It sounds like your questions and concerns regarding your health are not being dealt with satisfactorily and that's not acceptable. As Kaleena asks, did a gynecologic oncologist perform your surgery? That's really important and it's important that you're followed by one. I probably bore mine to death with just another routine exam, but he's been in practice for over 20 years and I'm sure he has seen a recurrence or two and knows how important it is to keep a check on all his patients, no matter how straightforward things may seem. While I absolutely hate my visits, I always feel so light and comfortable when I leave because I believe I'm being taken seriously. If you don't feel that way, you should switch docs. They're used to it!

    Write down all your questions prior to your appointment next week and take someone with you for another set of ears. Glad you're getting that CT scan and hope it will put your mind at ease.

    Oh, about the bleeding . . while 6 months seems like an awfully long time, my vaginal cuff took at least 3 months to completely heal, maybe 4 months. No one seemed particularly worried about it but me.

    Best wishes,
    Suzanne

    Hi Suzanne, I am trying to find some support since my surgery..I had everything removed in June and have had my six week check-up..First I was told that I had grade 1 but then after the surgery it was upped to grade 3..now because of that I am advised to have both chemo and radiation... I am going for a second opinion because after reading about all the problems other women have had from the treatments I am terrified to do any of them.

    I am trying to get into a chat room since I feel like I am in a black hole and so alone.

    I am so afraid to get the second opinion ....I was told it was contained in the wall 5% only but I am so scared they will say they found more in other organs.

    It seems like there will never be anything sure again in my life except 'cancer'...

    I am sooooo afraid.
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #7
    grandmathree said:

    Hi Suzanne, I am trying to find some support since my surgery..I had everything removed in June and have had my six week check-up..First I was told that I had grade 1 but then after the surgery it was upped to grade 3..now because of that I am advised to have both chemo and radiation... I am going for a second opinion because after reading about all the problems other women have had from the treatments I am terrified to do any of them.

    I am trying to get into a chat room since I feel like I am in a black hole and so alone.

    I am so afraid to get the second opinion ....I was told it was contained in the wall 5% only but I am so scared they will say they found more in other organs.

    It seems like there will never be anything sure again in my life except 'cancer'...

    I am sooooo afraid.

    Being cautious
    You will find other ladies here with grade 3 cancer who were also Stage 1a, and had chemotherapy and radiation. Do you know what type of cancer you had? The initial post was asking about adenocarcinoma, the most common type. Do you know what kind you had? If you were staged at 1a, it sounds like the only place they know the cancer was living was within the uterus. I assume your lymph nodes were checked and were clear?

    Try not to fret about that second opinion. It will help you make decisions regarding future treatment and hopefully will address your fears. You have plenty of support here on this board, in addition to lots of knowledge and experience. Cancer treatments are doable, but no one would say they're easy.

    Our lives are all different after cancer, no matter what type of cancer, or treatments we've had. Fear is an emotion we've all experienced. Ask any questions, vent any frustrations. We're all here for you.

    Hugs,
    Suzanne
  • BBShipbuilder
    BBShipbuilder Member Posts: 7
    #8
    grandmathree said:

    Hi Suzanne, I am trying to find some support since my surgery..I had everything removed in June and have had my six week check-up..First I was told that I had grade 1 but then after the surgery it was upped to grade 3..now because of that I am advised to have both chemo and radiation... I am going for a second opinion because after reading about all the problems other women have had from the treatments I am terrified to do any of them.

    I am trying to get into a chat room since I feel like I am in a black hole and so alone.

    I am so afraid to get the second opinion ....I was told it was contained in the wall 5% only but I am so scared they will say they found more in other organs.

    It seems like there will never be anything sure again in my life except 'cancer'...

    I am sooooo afraid.

    Definately go for the second opinion. The sooner the better. It's been a year since my chemo and radiation. Find out what drugs they intend to use, query them about the side effects. The oncology folks can advise you on how to combat the side effects. I had six sessions of taxol and carboplatin and two sessions of radiation at the end. I made it! Fatigue and hair loss were my worst side effects. I did end up with neuropathy in my feet but I have a script that helps the aching feeling at night. During this process you will have days that you'll feel depressed. This will pass. Remember, a year from know you'll feel good again. I opted for the chemo to make sure all the cancer cells get killed. So far so good. Stay strong and try to find a support group in your area. Sharing your experiences is a good thing and you'll find that you are not alone. Best Wishes!

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