went for six months check up--still ned by pap and exam. Is that good enough?

nempark
nempark Member Posts: 681
edited March 2014 in Uterine Cancer #1
Hi Guys: Went to Onc today for six month check up. He said everything is okay and that I will see him in three months. I wonder how thorough he is since he does not even do blood work. Would he be accurate with a pap and examination? I asked his nurse about scan and she said there is no need for that, only if I feel sick. What do you think? Good health to all of you. June
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Comments

  • jazzy1
    jazzy1 Member Posts: 1,379
    Check up
    June,

    I know each doc has a different setup for exams and scans. FYI I'm one year since my last treatment....doc does blood work, mainly looking at the CA 125 and that's every 4 months (as was every 3 months in beginning of followups). He'll do the CT scan every 8 months, as I spoke with him about concerns of radiation from CT's and he agreed. Now if the blood work comes back with suspicious issues, he'll do the CT if not scheduled for that appt. ALso, every appt he will do the pelvic exam and seems like every other one the pap.

    I've read on this site of other setups with follow up appts. Doesn't seem like many have any scans, unless show issues with blood work.

    You have MMMT don't you? What have you found via others here with that type of cancer? I have it, but to be honest my doc didn't make a big deal out of it. Seems like this type of cancer was in the uterus tumors and when the cancer was found in only 1 pelvic node, it was a very less aggressive type cancer. Just realize we all have to battle this cancer no matter what kind it is, so try not to get in a tizzy over it. Take one day at a time is my motto~

    Best to you..
    Jan
  • nempark
    nempark Member Posts: 681
    jazzy1 said:

    Check up
    June,

    I know each doc has a different setup for exams and scans. FYI I'm one year since my last treatment....doc does blood work, mainly looking at the CA 125 and that's every 4 months (as was every 3 months in beginning of followups). He'll do the CT scan every 8 months, as I spoke with him about concerns of radiation from CT's and he agreed. Now if the blood work comes back with suspicious issues, he'll do the CT if not scheduled for that appt. ALso, every appt he will do the pelvic exam and seems like every other one the pap.

    I've read on this site of other setups with follow up appts. Doesn't seem like many have any scans, unless show issues with blood work.

    You have MMMT don't you? What have you found via others here with that type of cancer? I have it, but to be honest my doc didn't make a big deal out of it. Seems like this type of cancer was in the uterus tumors and when the cancer was found in only 1 pelvic node, it was a very less aggressive type cancer. Just realize we all have to battle this cancer no matter what kind it is, so try not to get in a tizzy over it. Take one day at a time is my motto~

    Best to you..
    Jan

    Jan
    Thanks Jan: Yes I HAD MMMT. I haven't found any one who can give me any info on this type. If you look on board you will see a thread "are there any others with MMMT" There is a particular lady who is 3-1/2 years survivor, but I haven't heard from her for a long time. Karma and SueK also have the same, but were told the same about it. "Not much research" Forget the internet that is all doom and gloom. Anyway, mine was in the endometrium and was all caught on time. Doc just does the pelvic and anal exam. Then I go to the chemo doc and she does blood work but she says the 125 is not a marker for me. So what does she look for? I have been feeling a pain under my left arm, it feels as though I had been carrying a heavy bag. Docs lets wait and see if it becomes unbearable then we will address it. You are doing well Jan, one year since your last treatment that is fabulous. My last treatment was March can't wait to reach the one year mark. I had company for the last two weeks and I just went beserk eating all the wrong things and I also went to Canada and boy did I have some vodka(laugh) But I will start back on my watch. Hope you are keeping up and off course, we will all beat this nonsense. Thank you, you have cleared up my concerns. Love you Jan. June
  • Cecile Louise
    Cecile Louise Member Posts: 133
    nempark said:

    Jan
    Thanks Jan: Yes I HAD MMMT. I haven't found any one who can give me any info on this type. If you look on board you will see a thread "are there any others with MMMT" There is a particular lady who is 3-1/2 years survivor, but I haven't heard from her for a long time. Karma and SueK also have the same, but were told the same about it. "Not much research" Forget the internet that is all doom and gloom. Anyway, mine was in the endometrium and was all caught on time. Doc just does the pelvic and anal exam. Then I go to the chemo doc and she does blood work but she says the 125 is not a marker for me. So what does she look for? I have been feeling a pain under my left arm, it feels as though I had been carrying a heavy bag. Docs lets wait and see if it becomes unbearable then we will address it. You are doing well Jan, one year since your last treatment that is fabulous. My last treatment was March can't wait to reach the one year mark. I had company for the last two weeks and I just went beserk eating all the wrong things and I also went to Canada and boy did I have some vodka(laugh) But I will start back on my watch. Hope you are keeping up and off course, we will all beat this nonsense. Thank you, you have cleared up my concerns. Love you Jan. June

    Pap & Exam only
    Glad you asked, June - I've been wondering the same and honestly, worrying over it a bit. My onc does only pap & pelvic exam, now every 6 months. No bloodwork. My CA 125 was very low in the beginning, not a good indicator, he said. I HAD UPSC 1b & endometriod. I wonder if I should be concerned...

    Love,
    Cecile
  • jazzy1
    jazzy1 Member Posts: 1,379

    Pap & Exam only
    Glad you asked, June - I've been wondering the same and honestly, worrying over it a bit. My onc does only pap & pelvic exam, now every 6 months. No bloodwork. My CA 125 was very low in the beginning, not a good indicator, he said. I HAD UPSC 1b & endometriod. I wonder if I should be concerned...

    Love,
    Cecile

    Pap & exam
    Cecile,

    I know how you feel, when read about others with all the tests, etc. When I read all about the radiation from scans I had the talk with my doc....why do I need these every 3 months????? He agreed that I was doing quite well and looked at my chart, then suggested lets do the scans every other visit....yeah!!! Then when I read a few on this site which get scan NEVER, unless they have symptoms or something shows on blood test, then I feel why even have one unless have symptoms. That talk might be next visit.

    If your doc is easy to speak with, why not ask him about how he chose your follow-up exam. I've always been one to voice my opinion as feel this is my body and I'm in control....doc is expert in his field, but I also bring lots of information to the table (gain from you ladies and lots of reading). On other hand, I'm a stage 3 vs. yours at 1, so that might play something into the type of exam...think?

    How long out are you from your treatments?

    take care,
    Jan
  • jazzy1
    jazzy1 Member Posts: 1,379
    nempark said:

    Jan
    Thanks Jan: Yes I HAD MMMT. I haven't found any one who can give me any info on this type. If you look on board you will see a thread "are there any others with MMMT" There is a particular lady who is 3-1/2 years survivor, but I haven't heard from her for a long time. Karma and SueK also have the same, but were told the same about it. "Not much research" Forget the internet that is all doom and gloom. Anyway, mine was in the endometrium and was all caught on time. Doc just does the pelvic and anal exam. Then I go to the chemo doc and she does blood work but she says the 125 is not a marker for me. So what does she look for? I have been feeling a pain under my left arm, it feels as though I had been carrying a heavy bag. Docs lets wait and see if it becomes unbearable then we will address it. You are doing well Jan, one year since your last treatment that is fabulous. My last treatment was March can't wait to reach the one year mark. I had company for the last two weeks and I just went beserk eating all the wrong things and I also went to Canada and boy did I have some vodka(laugh) But I will start back on my watch. Hope you are keeping up and off course, we will all beat this nonsense. Thank you, you have cleared up my concerns. Love you Jan. June

    June
    Not everyone uses the CA 125 marker, usually really good with ovarian cancer. My doc found that mine initially was very, very high and after each treatment it went down until now it's around 3 or so and staying in that range. So he can follow it....at least this is what he told me.

    Hum...not sure about the pain under the arm. Could it be lymph node that would be called lymphodema??? You've read up on this with many on our site. I've not had these issues so can't comment. Nice that doc isn't concerned. You know any ache and pain we always go off the deep end with worry that cancer back. I did that with my back having lots of pain. After chatting with my doc he told me not cancer, most likely arthritis. So now learned to deal with arthritis...not fun!!! I never had to live with some pain for extended periods of time and just learned to work out differently and stretch more to help it.

    I go off the deep end with incorrect foods to eat...can relate. Just learn to jump back on the band wagon which holds the good foods for cancer survivors. Always a challenge isn't it?

    Take care ((( hugs )))
    Jan
  • lindaprocopio
    lindaprocopio Member Posts: 1,980

    Pap & Exam only
    Glad you asked, June - I've been wondering the same and honestly, worrying over it a bit. My onc does only pap & pelvic exam, now every 6 months. No bloodwork. My CA 125 was very low in the beginning, not a good indicator, he said. I HAD UPSC 1b & endometriod. I wonder if I should be concerned...

    Love,
    Cecile

    Some of us being followed with CT/Pet are RECURRENCE patients
    The posts about CT/Pet scans that others get for monitoring may have triggered your concerns that you are not being watched closely enough. I just want to make sure that you are aware that some of us that are being closely monitored with CA125 and CT/Pet scans have had a recurrence or have a SUSPECTED recurrence, and that is really when the monitoring gets intense like this.

    Before I had my recurrence and was still in my 1st remission, my oncologist said that he would give the most attention to any physical SYMPTOMS, and give less weight in his treatment decisions to a rising CA125 or even scan results. But he did do a CA125 at each 3-month routine monitoring.

    It was only when my CA125 spiked up sharply that my oncologist called for a CT scan, even though I had no physical symptoms of any kind and my internal looked perfect. (I think at 6 months my oncologist might have done a CT-scan as a routine monitoring to cpmpare to the 'baseline' CT-scan they did on me a month after I finshed radiation, but I didn't make it to 6 months of remission.) And it was only when the CT scan showed some enlarged lymph nodes that my oncologist called for a PET scan. So I think with many oncologists that when you are in remission after finishing your original treatment protocol, that there needs to be something like physical symptoms or a rising CA125 for many oncologists before they do scans. But I NEVER had any physical symptoms that preceded my recurrences, so without the CA125, I don't know how long it would have taken before they caught my recurrences.

    Now that I have had a recurrence, I get a CT/PET every 3 months routinely to guide treatment decisions. But that is because if the recurrence. (& likely because my insurance shells out the $22,000 for each CT/PET fusion scan I get!)
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    jazzy1 said:

    June
    Not everyone uses the CA 125 marker, usually really good with ovarian cancer. My doc found that mine initially was very, very high and after each treatment it went down until now it's around 3 or so and staying in that range. So he can follow it....at least this is what he told me.

    Hum...not sure about the pain under the arm. Could it be lymph node that would be called lymphodema??? You've read up on this with many on our site. I've not had these issues so can't comment. Nice that doc isn't concerned. You know any ache and pain we always go off the deep end with worry that cancer back. I did that with my back having lots of pain. After chatting with my doc he told me not cancer, most likely arthritis. So now learned to deal with arthritis...not fun!!! I never had to live with some pain for extended periods of time and just learned to work out differently and stretch more to help it.

    I go off the deep end with incorrect foods to eat...can relate. Just learn to jump back on the band wagon which holds the good foods for cancer survivors. Always a challenge isn't it?

    Take care ((( hugs )))
    Jan

    JUNE: my recurrence was in my underarm lymph node.
    June, I wanted to let you know that, although the recurrence of my uterine cancer was in my underarm lymph nodes, statistically the chances of mets to those nodes is less than 1%. So that is really a rare place to have your cancer go. It's possible, but not probable.
  • Kaleena
    Kaleena Member Posts: 2,081 Member

    JUNE: my recurrence was in my underarm lymph node.
    June, I wanted to let you know that, although the recurrence of my uterine cancer was in my underarm lymph nodes, statistically the chances of mets to those nodes is less than 1%. So that is really a rare place to have your cancer go. It's possible, but not probable.

    Just pondering the same questions about exams
    Hello All,

    I was wondering myself. I am back on a three month check-up since my surgery in February. (mass negative! only a microscopic cell in one lymph node that was removed that was sent away). However, when you do go, is it just a internal exam and a pap? Are they actually able to tell from an internal exam? I went for four years getting internal exams every six months and my previous gyn/onc still missed the mass.

    Also, I started doing this prior to my exams if you know you need blood work, get it done PRIOR to your appointment. (I still have a port and when I go monthly for flushes, I just get a scrip for blood work) Ask for a scrip. This way when you go to your appointment, you can get and talk about the results there. I also did this with scans because I knew they would order them every six months. It beats waiting for your three month check up, then getting blood work, scans, and then waiting for the calls, etc.

    Concerning scans: Since my initial diagnosis, I have had a CT every six months for four years, without any symptoms or reason. Since July of 2009, due to a mass (which was present in the CT Scans since 2005), I have had 4 CT/PET Scans, 2 CT Scans, a MRI and a regular PET Scan. (All, by the way were negative!). My new doctor had me do a regular PET scan in June (negative). It was without contrast and it was quick. He wanted to see me every three months, but he is off the whole month of September so it will actually be four months.

    I guess what I am trying to say, can they really tell from an internal exam or should we just schedule a scan and if necessary an appointment with the gyn/onc?

    Kathy
  • nempark
    nempark Member Posts: 681

    Pap & Exam only
    Glad you asked, June - I've been wondering the same and honestly, worrying over it a bit. My onc does only pap & pelvic exam, now every 6 months. No bloodwork. My CA 125 was very low in the beginning, not a good indicator, he said. I HAD UPSC 1b & endometriod. I wonder if I should be concerned...

    Love,
    Cecile

    Cecile
    I was MMMT 1a I guess the stage has a lot to do with this. I guess we should stop worrying. Good for you every six months. You are doing great.
  • nempark
    nempark Member Posts: 681
    jazzy1 said:

    June
    Not everyone uses the CA 125 marker, usually really good with ovarian cancer. My doc found that mine initially was very, very high and after each treatment it went down until now it's around 3 or so and staying in that range. So he can follow it....at least this is what he told me.

    Hum...not sure about the pain under the arm. Could it be lymph node that would be called lymphodema??? You've read up on this with many on our site. I've not had these issues so can't comment. Nice that doc isn't concerned. You know any ache and pain we always go off the deep end with worry that cancer back. I did that with my back having lots of pain. After chatting with my doc he told me not cancer, most likely arthritis. So now learned to deal with arthritis...not fun!!! I never had to live with some pain for extended periods of time and just learned to work out differently and stretch more to help it.

    I go off the deep end with incorrect foods to eat...can relate. Just learn to jump back on the band wagon which holds the good foods for cancer survivors. Always a challenge isn't it?

    Take care ((( hugs )))
    Jan

    Jan
    I too have back pain doc says its nothing maybe arthritis. I find motrin helps. Unfortunately my doc has no bed side manners. Yes Jan, I guess I have to stop worrying. Linda made me feel better about the mets being less than 1%. All the best. June
  • nempark
    nempark Member Posts: 681

    JUNE: my recurrence was in my underarm lymph node.
    June, I wanted to let you know that, although the recurrence of my uterine cancer was in my underarm lymph nodes, statistically the chances of mets to those nodes is less than 1%. So that is really a rare place to have your cancer go. It's possible, but not probable.

    Linda
    Linda, I look for your posts all the time. Thank you so much. This makes a big difference for me. I will surely stop worrying. Hope you are enjoying yourself with the fam. From your posts you are doing just fine. Love and hugs. June
  • nempark
    nempark Member Posts: 681
    Kaleena said:

    Just pondering the same questions about exams
    Hello All,

    I was wondering myself. I am back on a three month check-up since my surgery in February. (mass negative! only a microscopic cell in one lymph node that was removed that was sent away). However, when you do go, is it just a internal exam and a pap? Are they actually able to tell from an internal exam? I went for four years getting internal exams every six months and my previous gyn/onc still missed the mass.

    Also, I started doing this prior to my exams if you know you need blood work, get it done PRIOR to your appointment. (I still have a port and when I go monthly for flushes, I just get a scrip for blood work) Ask for a scrip. This way when you go to your appointment, you can get and talk about the results there. I also did this with scans because I knew they would order them every six months. It beats waiting for your three month check up, then getting blood work, scans, and then waiting for the calls, etc.

    Concerning scans: Since my initial diagnosis, I have had a CT every six months for four years, without any symptoms or reason. Since July of 2009, due to a mass (which was present in the CT Scans since 2005), I have had 4 CT/PET Scans, 2 CT Scans, a MRI and a regular PET Scan. (All, by the way were negative!). My new doctor had me do a regular PET scan in June (negative). It was without contrast and it was quick. He wanted to see me every three months, but he is off the whole month of September so it will actually be four months.

    I guess what I am trying to say, can they really tell from an internal exam or should we just schedule a scan and if necessary an appointment with the gyn/onc?

    Kathy

    Kathy
    Read the other posts here. I am with you. Can they really tell from an internal exam. I don't think we can schedule the scan unless doc recommends it. What a life? We will be alright. June
  • norma2
    norma2 Member Posts: 479
    nempark said:

    Jan
    I too have back pain doc says its nothing maybe arthritis. I find motrin helps. Unfortunately my doc has no bed side manners. Yes Jan, I guess I have to stop worrying. Linda made me feel better about the mets being less than 1%. All the best. June

    Enjoy your nedness
    I am glad you are NED!!! Good for you. I felt similarly when I got my No evidence of disease 6 weeks ago. Thinking about it will drive me nuts. I just have to trust that it is ok. My next exam is Oct 4. CAT, bloodwork, physical...etc. At MD Anderson they do them every 6 mos with a physical exam and blood work every 3 months in between unless presenting symptoms. So far no symptoms.

    I am going to dance the NED dance with you!!!! Enjoy this time to relax and enjoy life, darlin.
  • jazzy1
    jazzy1 Member Posts: 1,379
    nempark said:

    Jan
    I too have back pain doc says its nothing maybe arthritis. I find motrin helps. Unfortunately my doc has no bed side manners. Yes Jan, I guess I have to stop worrying. Linda made me feel better about the mets being less than 1%. All the best. June

    June
    What I've learned from not just one, but many others on this site for pain, take Aleve. I take 2 every 12 hours or so and seems to kick out the pain. Also, if it's arthritis, movement is what helps relieve much of the pain. I find when I'm sitting at my computer a lot, by end of the day I'm stiff and in pain, but after a great 1 hour, intense workout at the gym I don't feel pain. Amazing how are bodies work!! Do you do much exercise? Try it as might be helpful

    Linda is full of so much information that I too always love to read her posts...keep 'em coming Ms. Linda!

    Be kind to yourself and know you'll get thru this and be GREAT!!!
    Jan
  • nempark
    nempark Member Posts: 681
    jazzy1 said:

    June
    What I've learned from not just one, but many others on this site for pain, take Aleve. I take 2 every 12 hours or so and seems to kick out the pain. Also, if it's arthritis, movement is what helps relieve much of the pain. I find when I'm sitting at my computer a lot, by end of the day I'm stiff and in pain, but after a great 1 hour, intense workout at the gym I don't feel pain. Amazing how are bodies work!! Do you do much exercise? Try it as might be helpful

    Linda is full of so much information that I too always love to read her posts...keep 'em coming Ms. Linda!

    Be kind to yourself and know you'll get thru this and be GREAT!!!
    Jan

    FOR ALL OF YOU!!!! THANKS1
    So many responses, so great to hear from all of you. I am done, I am done worrying Thanks again! Love you all.
  • nempark
    nempark Member Posts: 681
    jazzy1 said:

    June
    What I've learned from not just one, but many others on this site for pain, take Aleve. I take 2 every 12 hours or so and seems to kick out the pain. Also, if it's arthritis, movement is what helps relieve much of the pain. I find when I'm sitting at my computer a lot, by end of the day I'm stiff and in pain, but after a great 1 hour, intense workout at the gym I don't feel pain. Amazing how are bodies work!! Do you do much exercise? Try it as might be helpful

    Linda is full of so much information that I too always love to read her posts...keep 'em coming Ms. Linda!

    Be kind to yourself and know you'll get thru this and be GREAT!!!
    Jan

    FOR ALL OF YOU!!!! THANKS!!
    So many responses. I am done, I am done worrying Thanks again! Love you all.
  • nempark
    nempark Member Posts: 681
    norma2 said:

    Enjoy your nedness
    I am glad you are NED!!! Good for you. I felt similarly when I got my No evidence of disease 6 weeks ago. Thinking about it will drive me nuts. I just have to trust that it is ok. My next exam is Oct 4. CAT, bloodwork, physical...etc. At MD Anderson they do them every 6 mos with a physical exam and blood work every 3 months in between unless presenting symptoms. So far no symptoms.

    I am going to dance the NED dance with you!!!! Enjoy this time to relax and enjoy life, darlin.

    MISS YOU NORM
    Thanks for your input. June
  • Cecile Louise
    Cecile Louise Member Posts: 133
    Love you guys!
    Thanks to all for your responses. As usual, the loving and thoughtful way you share your experiences and knowledge is balm to my soul. I, too, am guilty of having little freak-out moments when something feels different, or when I get that "has it come back?" thought stuck in my head and you all help me get past it. For that I am grateful. I have a couple of issues (pelvic cramping, a little knot in my right armpit) that I will discuss with my gyn/onc at my next visit, but until then, I am going to quit worrying myself to distraction over it.

    Jan - it's been 2 years, one month since my last chemo. Whee!

    Love, love,
    Cecile
  • daisy366
    daisy366 Member Posts: 1,458 Member

    Love you guys!
    Thanks to all for your responses. As usual, the loving and thoughtful way you share your experiences and knowledge is balm to my soul. I, too, am guilty of having little freak-out moments when something feels different, or when I get that "has it come back?" thought stuck in my head and you all help me get past it. For that I am grateful. I have a couple of issues (pelvic cramping, a little knot in my right armpit) that I will discuss with my gyn/onc at my next visit, but until then, I am going to quit worrying myself to distraction over it.

    Jan - it's been 2 years, one month since my last chemo. Whee!

    Love, love,
    Cecile

    Pap or no pap
    I just had this conversation with both my gyn-onc and PCP. They both said I don't need a pap since I don't have a cervix. I am getting Pet/CT on Sept 2 to check on my recurrence (found in subclavian lymph node) so figure this will tell status of UPSC.

    Why do some of us get paps and others not? I don't understand this. Mary Ann
  • kellyw314
    kellyw314 Member Posts: 51
    daisy366 said:

    Pap or no pap
    I just had this conversation with both my gyn-onc and PCP. They both said I don't need a pap since I don't have a cervix. I am getting Pet/CT on Sept 2 to check on my recurrence (found in subclavian lymph node) so figure this will tell status of UPSC.

    Why do some of us get paps and others not? I don't understand this. Mary Ann

    My gyn/onc has told me that

    My gyn/onc has told me that a recurrence most often occurs in the vaginal cuff and within first 2 years post-surgery - for those 2 years I had appointments every 3 months with Paps at 6 month intervals - have passed that milepost and not seeing him every 6 months with yearly Pap - this will continue until 5 years out and than I think will become only a yearly check unless I have any symptoms - every appt inquires if I have had any vaginal discharge or bleeding - thus far negative