My followup appt. is Tuesday

bella09
bella09 Member Posts: 37 Member
edited March 2014 in Uterine/Endometrial Cancer #1
I have only posted a few times but I find strength reading other posts and am encouraged by what I read. I completed my last internal radiation treatment on May 18, 2009. I have a followup dr. appt. with my radiologist and oncologist on Tuesday, June 16th. I have/had clear cell uterine cancer and my doctor told me that it is a high grade cancer. He also told me that the chance that it will reoccur is likely at some point in time. I am hoping for good news on Tuesday. I know that I need to ask him what they do to monitor me other than an exam every few months. Has anyone gotten to this stage post treatment and what questions did they ask? I think about this all the time. A friend of mine told me that I will feel better after my appt. on Tuesday. I hope that this is true. I really can't share what I am feeling with my family. On the outside I appear like nothing is wrong, but on the inside is different. I know that everything is in God's hands. Someone commented how this site has grown. I am amazed with everyone's strength and what each of you have gone through and some are still going through. My prayers are with you. I am a strong person and most of the time am positive. I am thankful for everyday. I didn't mean to write so much, but I now feel better that I have.

Jean

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Most of us have monitoring every 3 months: CT-scan & CA-125
    I just finished my external radiation Tuesday (yesterday!) and still have 3 internal radiation treatments to do before I am OUT OF TREATMENT on July 1, 2009. But I have been told that I will get CA-125 bloodwork, a pelvic physical exam, and a diagnostic CT-scan every 3 months for the next 2 to 5 years. My oncologist says he gives CT-scans the most weight in his diagnosis, followed by physical exams/symptoms, and gives the least weight to CA-125 testing. But all 3 are factored in. I also have a Grade 3 type of cancer with a 40% statistical recurrance rate. I plan to be in the 60% who are spared recurrance!

    Best wishes for good news Tuesday! I am trying to imagine how it will feel to NOT see a doctor for 3 full months. I can guess that I will feel a bit anxious. I had all my chemo first, and THEN my radiation last, and it felt wierd during radiation to never have blood drawn and to never really know what the treatments were doing to my counts and marrow. (All they ever did was WEIGH me once a week, no other vitals taken ever during the 28 radiation rounds). I hope that I will be able to put cancer out of my mind between 3 month check-ups, but I guess I won't know if I can until I get there in July.
  • barb55
    barb55 Member Posts: 91
    Jean
    You will feel better after your appointment. I finished my treatment just over a year ago and the week or so before each follow up exam I still find myself getting very anxious and moody. I realize now that it has everything to do with my appointment and I have no idea how long this goes on for - maybe many many years- hopefully I will have many many years of good news. After the appointment I always feel like a huge cloud has been lifted. Most of us here have Uterine Papillary Serrous Cancer and it is never a good cancer especially if caught late- .Check in here and feel free to vent- we really do understand. You certainly don't have to appologize for writing so much. There are no rules for getting through this- just sharing and caring and doing the best we can is all we can do. Best of luck to you.
    Barb
  • barb55
    barb55 Member Posts: 91
    barb55 said:

    Jean
    You will feel better after your appointment. I finished my treatment just over a year ago and the week or so before each follow up exam I still find myself getting very anxious and moody. I realize now that it has everything to do with my appointment and I have no idea how long this goes on for - maybe many many years- hopefully I will have many many years of good news. After the appointment I always feel like a huge cloud has been lifted. Most of us here have Uterine Papillary Serrous Cancer and it is never a good cancer especially if caught late- .Check in here and feel free to vent- we really do understand. You certainly don't have to appologize for writing so much. There are no rules for getting through this- just sharing and caring and doing the best we can is all we can do. Best of luck to you.
    Barb

    follow up
    Linda, It's interesting to me that you will be getting CT scans every 3 months- I don't . My doctors said they will only do them if there are specific concerns- when I had stomach pain they gave me a scan, I just get my bloodwork and a physical exam- just graduated to every 4 months. I see my surgeon every 6 months. Was wondering what kind of followup everyone else is getting. Oh and yes it took me a while to relax in between appointments. Cancer world always stayed with me, but with each appointment my time in the other world is longer and more joyful. As I said in the last blog, I notice I'm feeling different the weeks or so before each appointment but for a couple of months I'm very very happy. Enjoy your breaks.
    Bartb
  • deanna14
    deanna14 Member Posts: 732
    barb55 said:

    Jean
    You will feel better after your appointment. I finished my treatment just over a year ago and the week or so before each follow up exam I still find myself getting very anxious and moody. I realize now that it has everything to do with my appointment and I have no idea how long this goes on for - maybe many many years- hopefully I will have many many years of good news. After the appointment I always feel like a huge cloud has been lifted. Most of us here have Uterine Papillary Serrous Cancer and it is never a good cancer especially if caught late- .Check in here and feel free to vent- we really do understand. You certainly don't have to appologize for writing so much. There are no rules for getting through this- just sharing and caring and doing the best we can is all we can do. Best of luck to you.
    Barb

    Jean
    I agree with Barb, very well said. Some days you just have to let those negative feelings out or they will overwhelm you. That is what we are hear for... who else could really know how you feel?
    Hang in the Jean, you are strong.

    Oh, and Barb, my treatment plan too contains every 3 month CT scan, follow up lab, exam and visit with the doctor. In fact, the last time I saw the NP, she said he might possible want to see me every 2 months for a while due to the aggressive nature of UPSC.
  • MaryAnnOnTheBay
    MaryAnnOnTheBay Member Posts: 20
    My follow up before recurrence
    My treatment seems different from most. I never had radiation. My oncologist/surgeon/UPSC specialist did a pap smear every 6 months. My chemo oncologist did CA-125. I did not have any CT scans until two years later in the emergency room for kidney pain. I did have a chest x-ray every 6 months. The recurrence was not diagnosed until after I had surgery on my right uterer which caused intestinal blockage resulting in surgery for that during which the surgeon spotted something in passing which he sent out for biopsy. It showed recurrence. The CT scan also showed nodules on the base of my lungs. Or maybe the x-rays showed suspected nodules first. I'm 73 years old, have had a full life and am taking it one day at a time. Mary Ann on San Francisco Bay
  • deanna14
    deanna14 Member Posts: 732

    My follow up before recurrence
    My treatment seems different from most. I never had radiation. My oncologist/surgeon/UPSC specialist did a pap smear every 6 months. My chemo oncologist did CA-125. I did not have any CT scans until two years later in the emergency room for kidney pain. I did have a chest x-ray every 6 months. The recurrence was not diagnosed until after I had surgery on my right uterer which caused intestinal blockage resulting in surgery for that during which the surgeon spotted something in passing which he sent out for biopsy. It showed recurrence. The CT scan also showed nodules on the base of my lungs. Or maybe the x-rays showed suspected nodules first. I'm 73 years old, have had a full life and am taking it one day at a time. Mary Ann on San Francisco Bay

    Big Hugs to you MaryAnn On The Bay
    I think taking one day at a time, walking with the Lord is the only way for any of us, no matter what our age. Now days 73 is young and you certainly look much younger. My thoughts and prayers are with you and all the wonderful ladies on this site. ((((MaryAnn)))
  • shortmarge
    shortmarge Member Posts: 291
    deanna14 said:

    Big Hugs to you MaryAnn On The Bay
    I think taking one day at a time, walking with the Lord is the only way for any of us, no matter what our age. Now days 73 is young and you certainly look much younger. My thoughts and prayers are with you and all the wonderful ladies on this site. ((((MaryAnn)))

    bella09
    I too had clear cell plus UPSC. Finished treatment in February, been through my first three month check-up and everything was great. But.... Monday I had a lump under my arm, scared the living sh** out of me to find it was just a pimple. And then two days ago I cried again, and made my husband cry to. It just seems that every little ache and pain it worries you but you try so hard not to because stress is a bad thing. Menopause doesn't help any either! Do we ever get over CANCER BRAIN? Lord I pray we do, but it is wonderful to know that there are amazing, strong and loving women here to listen and understand what you are going through.

    I truely believe in my heart that with todays treatments we are less likely to have a recurrence. Prayers to all...

    MIND, BODY AND SOUL!

    Hugs.
  • deanna14
    deanna14 Member Posts: 732

    bella09
    I too had clear cell plus UPSC. Finished treatment in February, been through my first three month check-up and everything was great. But.... Monday I had a lump under my arm, scared the living sh** out of me to find it was just a pimple. And then two days ago I cried again, and made my husband cry to. It just seems that every little ache and pain it worries you but you try so hard not to because stress is a bad thing. Menopause doesn't help any either! Do we ever get over CANCER BRAIN? Lord I pray we do, but it is wonderful to know that there are amazing, strong and loving women here to listen and understand what you are going through.

    I truely believe in my heart that with todays treatments we are less likely to have a recurrence. Prayers to all...

    MIND, BODY AND SOUL!

    Hugs.

    chemo brain
    My brother is 6 years out from colon cancer and my mom 16 years out from endometrial and 5 years out from breast. He had chemo, mom just had surgery both times. They tell me that it does get easier as time goes by, but it never really goes away. I remember my mom calling me one day not long after her hysterectomy and she was hysterical because she had had a BM and there was blood in the stool and on her toilet paper. Turned out to be a hemorrhoid. Anyway I think worrying is normal. I am trying to give the worry to God, I know that he helps me carry my burdens, but I certainly do have to remind myself frequently!
    I too am happy to have you all to talk to!
  • bella09
    bella09 Member Posts: 37 Member

    Most of us have monitoring every 3 months: CT-scan & CA-125
    I just finished my external radiation Tuesday (yesterday!) and still have 3 internal radiation treatments to do before I am OUT OF TREATMENT on July 1, 2009. But I have been told that I will get CA-125 bloodwork, a pelvic physical exam, and a diagnostic CT-scan every 3 months for the next 2 to 5 years. My oncologist says he gives CT-scans the most weight in his diagnosis, followed by physical exams/symptoms, and gives the least weight to CA-125 testing. But all 3 are factored in. I also have a Grade 3 type of cancer with a 40% statistical recurrance rate. I plan to be in the 60% who are spared recurrance!

    Best wishes for good news Tuesday! I am trying to imagine how it will feel to NOT see a doctor for 3 full months. I can guess that I will feel a bit anxious. I had all my chemo first, and THEN my radiation last, and it felt wierd during radiation to never have blood drawn and to never really know what the treatments were doing to my counts and marrow. (All they ever did was WEIGH me once a week, no other vitals taken ever during the 28 radiation rounds). I hope that I will be able to put cancer out of my mind between 3 month check-ups, but I guess I won't know if I can until I get there in July.

    Thank you for your help
    Congratulations on finishing your external radiation. You are one step closer to being finished. I was perscibed Ativan to take before my internal treatments. It seemed to relax me. Thank you for the information on what to ask at my appt. I am hoping for more than just an exam each time. A friend told me that this is behind me now. I have to start believing that. I am going to stay busy and think positive. I do hope that you are able to put cancer out of your mind between check-ups. God has a plan for all of us. I will look forward to reading when you have finished your treatment.
  • bella09
    bella09 Member Posts: 37 Member
    barb55 said:

    Jean
    You will feel better after your appointment. I finished my treatment just over a year ago and the week or so before each follow up exam I still find myself getting very anxious and moody. I realize now that it has everything to do with my appointment and I have no idea how long this goes on for - maybe many many years- hopefully I will have many many years of good news. After the appointment I always feel like a huge cloud has been lifted. Most of us here have Uterine Papillary Serrous Cancer and it is never a good cancer especially if caught late- .Check in here and feel free to vent- we really do understand. You certainly don't have to appologize for writing so much. There are no rules for getting through this- just sharing and caring and doing the best we can is all we can do. Best of luck to you.
    Barb

    Thank you
    Thank you for your posting. I am glad that you have been getting positive news at each appt. I hope that you continue to get good news. I am glad that I can share here. I have a great family, but it is hard to talk about my worries and feelings with them so I find myself not talking about it at all. Maybe that is why I have been nervous about Tuesday. I am glad that I can say what I feel here and am understood. I am thankful for this site and everyone here.

    Jean
  • bella09
    bella09 Member Posts: 37 Member

    My follow up before recurrence
    My treatment seems different from most. I never had radiation. My oncologist/surgeon/UPSC specialist did a pap smear every 6 months. My chemo oncologist did CA-125. I did not have any CT scans until two years later in the emergency room for kidney pain. I did have a chest x-ray every 6 months. The recurrence was not diagnosed until after I had surgery on my right uterer which caused intestinal blockage resulting in surgery for that during which the surgeon spotted something in passing which he sent out for biopsy. It showed recurrence. The CT scan also showed nodules on the base of my lungs. Or maybe the x-rays showed suspected nodules first. I'm 73 years old, have had a full life and am taking it one day at a time. Mary Ann on San Francisco Bay

    One Day at a Time
    I like that saying One Day at a Time. I am sorry to hear about your recurrence. I had external and internal radiation without chemo. My doctor's opinion was that I only needed radiation, but I was told that it was my choice. He said that he didn't want me to regret just radiation if there were a recurrence. I think that I am already regretting my decision. Maybe if I had done more, then I wouldn't feel this way, (worried that it may return). I didn't want to go through additional treatment if my oncologist and radiologist didn't reccomend it. Maybe I made the right decision after all. You sound very positive and I am glad that you have a full life. I have much to be thankful for and I need to remind myself of that. I hope that all goes well for you.

    Jean
  • bella09
    bella09 Member Posts: 37 Member

    bella09
    I too had clear cell plus UPSC. Finished treatment in February, been through my first three month check-up and everything was great. But.... Monday I had a lump under my arm, scared the living sh** out of me to find it was just a pimple. And then two days ago I cried again, and made my husband cry to. It just seems that every little ache and pain it worries you but you try so hard not to because stress is a bad thing. Menopause doesn't help any either! Do we ever get over CANCER BRAIN? Lord I pray we do, but it is wonderful to know that there are amazing, strong and loving women here to listen and understand what you are going through.

    I truely believe in my heart that with todays treatments we are less likely to have a recurrence. Prayers to all...

    MIND, BODY AND SOUL!

    Hugs.

    Todays treatments
    Medical science has come a long way. I am glad that you are finished with your treatments and have your first check up behind you. I am happy that you had good news at your appt. I know what you mean by worrying about every little ache and pain. I originally went to my gyncologist because I was having abnormal monthly cycles. This had been going on for quite awhile. I was hoping for a procedure that would stop this, and never thought that I had cancer. I learned the hard way to listen to my body. I have been trying not to worry and I pray a lot. I do have a strong faith. I will be glad when Tuesday comes and goes. This site is wonderful. I have shared with a friend of mine, who had also had cancer, about this site. I have gained so much from reading what others have shared and am thankful for responses to my concerns. Thank you to all for helping me through this.

    Jean
  • bella09
    bella09 Member Posts: 37 Member
    deanna14 said:

    chemo brain
    My brother is 6 years out from colon cancer and my mom 16 years out from endometrial and 5 years out from breast. He had chemo, mom just had surgery both times. They tell me that it does get easier as time goes by, but it never really goes away. I remember my mom calling me one day not long after her hysterectomy and she was hysterical because she had had a BM and there was blood in the stool and on her toilet paper. Turned out to be a hemorrhoid. Anyway I think worrying is normal. I am trying to give the worry to God, I know that he helps me carry my burdens, but I certainly do have to remind myself frequently!
    I too am happy to have you all to talk to!

    As time goes by
    Deanna,I am glad that you and your family have their cancer behind them. Did you say that you finished your treatments? I hope that you did. I have always been a worrier. I will give my worries to God because I know that he is with me always. I am also glad that I found this site and and am thankful for the wonderful people here.

    Jean
  • kkstef
    kkstef Member Posts: 688 Member
    barb55 said:

    follow up
    Linda, It's interesting to me that you will be getting CT scans every 3 months- I don't . My doctors said they will only do them if there are specific concerns- when I had stomach pain they gave me a scan, I just get my bloodwork and a physical exam- just graduated to every 4 months. I see my surgeon every 6 months. Was wondering what kind of followup everyone else is getting. Oh and yes it took me a while to relax in between appointments. Cancer world always stayed with me, but with each appointment my time in the other world is longer and more joyful. As I said in the last blog, I notice I'm feeling different the weeks or so before each appointment but for a couple of months I'm very very happy. Enjoy your breaks.
    Bartb

    Follow up
    Barb, my gyn/oncologist did CT scans before I started treatment and then in March, 3 months after I finished. He also said he will not do anymore scans unless I have some symptoms and that I will have an annual chest x-ray. I see him every 3 months for 2 years for pelvic exam.

    And yes, before each appt I do get a bit nervous and more quiet..I suspect this continues forever.

    Karen