Stage 1 Grade 1 Recurrence Cancer only Treatable with Radiation - Chemo won't work?

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Prissy777
Prissy777 Member Posts: 41 Member

I posted earlier last week about being the the 5% recurrent for endometrial cancer, stage 1 grade 1.  I saw the doctor today and there are two masses 1.1 Cm and 2.2 cm that he wants to treat with radiation.  He says radiation should work, but I asked him if it did not would I do chemo and he said chemo does not work on lower grade cancers. and there really wouldn' be any other treatment he could recommend.  Has anyone else heard of this.  Please reply especially if you are Endometrial adeocarcinoma grade 1 stage 1 recurrence.  Thank you very much.

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  • Kaleena
    Kaleena Member Posts: 2,088 Member
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    Second Opinion

    My endometrial adenocarcioma was grade 2 stage 3 and although they seemed to have gotten it all on the initial hysterectomy (it was a surprise finding), and the fact that I was 45 years of age at the time, it was up to me on whether or not I wanted chemo.   I went on that because I knew I would always worry about an ache and pain.   When I was getting chemo, there was a woman who was treating again because her stage 1 endometrial adenocarcinoma came back.

    I do not show the classical symptoms.  In fact, prior to my hysterectomy, I insisted on certain tests (scans) but they said I didn't need it.  I just had endometriosis.  (They prior did a laparoscopy).  They also did an internal ultrasound which only showed a tilted uterus.   However, I had it in my uterus, cervix and left ovary.

    They still don't know how to classify me.   So if I were you and for your own piece of mind, I would seek a second opinion.  Also, it is what you want to do.   If you feel better with a chemo, maybe ask for a lesser type of chemo instead of the top of the line defense.   

    Also, did they do an assay on your original tissues?

    Also, please know that once that use radiation on those masses, you cannot get radiation again and if it comes back again at that same area you can no longer get radiation.   That is what they told me anyways.  So be sure to ask a lot of questions about radiation, future recurrences, etc., before you make your decision.

    Kathy

  • Prissy777
    Prissy777 Member Posts: 41 Member
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    Kaleena said:

    Second Opinion

    My endometrial adenocarcioma was grade 2 stage 3 and although they seemed to have gotten it all on the initial hysterectomy (it was a surprise finding), and the fact that I was 45 years of age at the time, it was up to me on whether or not I wanted chemo.   I went on that because I knew I would always worry about an ache and pain.   When I was getting chemo, there was a woman who was treating again because her stage 1 endometrial adenocarcinoma came back.

    I do not show the classical symptoms.  In fact, prior to my hysterectomy, I insisted on certain tests (scans) but they said I didn't need it.  I just had endometriosis.  (They prior did a laparoscopy).  They also did an internal ultrasound which only showed a tilted uterus.   However, I had it in my uterus, cervix and left ovary.

    They still don't know how to classify me.   So if I were you and for your own piece of mind, I would seek a second opinion.  Also, it is what you want to do.   If you feel better with a chemo, maybe ask for a lesser type of chemo instead of the top of the line defense.   

    Also, did they do an assay on your original tissues?

    Also, please know that once that use radiation on those masses, you cannot get radiation again and if it comes back again at that same area you can no longer get radiation.   That is what they told me anyways.  So be sure to ask a lot of questions about radiation, future recurrences, etc., before you make your decision.

    Kathy

    Thank you so much for replying

    I really appreciate anybody's input on this and I'm very appreciative of your email thank you

  • HellieC
    HellieC Member Posts: 524 Member
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    I was a grade 1 recurrence

    When I had my first recurrence (back in 2007) I was also told that radiation was the way to go and it would be done with curative intent.  I asked about chemotherapy and was told that it may shrink the tumour for a while, but wouldn't cure it.  I asked about surgery (I had a central pelvic recurrence) and was told that it would involve a colostomy, as the bowel was involved, so preferable to try the radiotherapy first.  So I had the radiotherapy and was OK for 2.5 years. We thought we were out of the woods, but I was unlucky and it didn't cure it, so I have since had surgery, hormone therapy, Cyberknife radiotherapy (the only type of radiotherapy that can be given to an area awhich has already been irradiated).  Chemo is still in the wings but it will only buy time not cure.

    Please remember that my radiotherapy treatment was several years ago and they are refining techniques all the time to make it more effective.  But if you are at all unsure, then I think a second opinion is a reasonable option.

    Kindest wishes
    Helen

  • oldbeauty
    oldbeauty Member Posts: 368 Member
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    Take your time and get a second opinion

    I was diagnosed in 2005 with Grade IC, Stage II endometrial adenocarcinoma.  Had complete hysterectomy and external radiation and declared cured.  Had diagnosis of metastatic recurrence in 2012 with tumor in para-aortic area, scattered lesions in both lungs and a second tumor in my right clavicle area.  I was living in Australia at the time and the therapy prescribed was radiation (a different enough area from first time that radiation was possible) and high-dose hormone therapy...400 mg daily of progesterone (Provera).  At the time, there was some question what was going on in my lungs but the radiation oncologist assured me is was cancer.  For the remaining time I lived in Australia my 6-month CT scans showed tumors shrinking until the time I left in October 2013 I was considered to have a "partial result" which meant that I was on a good trajectory.  Today, I am NED (no evidence of disease) as I continue on my high-dose of Provera.  The US doctors I saw upon my return ridiculed the treatment I received in Australia, one doctor rolling his eyes as if Australia is some third-world country.  I will say, however, the hormone therapy seems to be disfavored in the US.  The only other person I see on this board who has been on it is Helen in England.  So maybe it is a therapy that is more pursue by the British Commonwealth countries.  I now live in Pittsburgh and have a gyn oncologist who also disapproved of my treatment and he sent me for a PET scan and CT in January 2015.  I had mild uptakes in the upper part of the stomach and my breasts.  An upper GI endoscopy showed nothing and a rigorous set of mammograms and ultrasound of the breasts is "probably benign" and will be repeated in October.  But the upshot is NED status and my current doctor had the grace and humility to acknowledge that he could not have expected the chemo regimen that would have prescribed would have put me in any better place than I am now.  Having said all that, what I would say to you is to take your time and gather info and get a second opinion.  I am convinced that there is no reason to treat these situations as emergencies requiring an instant decision in response to one doctor's advice.  You don't say whether you've had your tumors biopsied.  You certainly should demand this.  It may be that your tissue can be tested to learn whether there is a chemo that will not work and one or more that will.  Find out also whether the receptor status of the cancer is estrogen and/or progesterone positive.  If it is progesterone receptor positive you are at least a possible candidate for hormone therapy.  The problem with progesterone therapy is while it is acknowledged that science supports some women and responsive to the therapy, there is no test to determine if it will work for you and there is science that indicates that even if it works, it eventually will not (the thought is that the progesterone receptor status degrades after some period of treatment).  Find out if your insurance has a special cancer care provision.  This may enable you to get a second opinion at a leading cancer care hospital outside of your network.  At my first diagnosis I went to Moffit in the Tampa, FL area and was satisfied.  Even if you can't go out of network, do some research and find out who are the best gynecological oncologists in your area.  Get a second opinion on biopsy, possible surgery, chemo and hormone therapy.  At both my diagnoses, I reacted in panic and did not do things in my interest that, with the benefit of hindsight, I wish I had.  For example, at the recurrence why I did not insist that the second tumor be biopsied I don't know.  I knew that it wasn't going to be radiated because it was being used as a "guinea pig" to see if the Provera worked.  That tumor is now gone, but as one US doctor said we can't be sure it was cancer at all because it wasn't biopsied. He was right.  So, try to calm down and go about getting a dependable diagnosis and treatment options that you can weigh and judge what has the best possible outcome for you.  Best wishes in your journey.  Oldbeauty

  • Prissy777
    Prissy777 Member Posts: 41 Member
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    oldbeauty said:

    Take your time and get a second opinion

    I was diagnosed in 2005 with Grade IC, Stage II endometrial adenocarcinoma.  Had complete hysterectomy and external radiation and declared cured.  Had diagnosis of metastatic recurrence in 2012 with tumor in para-aortic area, scattered lesions in both lungs and a second tumor in my right clavicle area.  I was living in Australia at the time and the therapy prescribed was radiation (a different enough area from first time that radiation was possible) and high-dose hormone therapy...400 mg daily of progesterone (Provera).  At the time, there was some question what was going on in my lungs but the radiation oncologist assured me is was cancer.  For the remaining time I lived in Australia my 6-month CT scans showed tumors shrinking until the time I left in October 2013 I was considered to have a "partial result" which meant that I was on a good trajectory.  Today, I am NED (no evidence of disease) as I continue on my high-dose of Provera.  The US doctors I saw upon my return ridiculed the treatment I received in Australia, one doctor rolling his eyes as if Australia is some third-world country.  I will say, however, the hormone therapy seems to be disfavored in the US.  The only other person I see on this board who has been on it is Helen in England.  So maybe it is a therapy that is more pursue by the British Commonwealth countries.  I now live in Pittsburgh and have a gyn oncologist who also disapproved of my treatment and he sent me for a PET scan and CT in January 2015.  I had mild uptakes in the upper part of the stomach and my breasts.  An upper GI endoscopy showed nothing and a rigorous set of mammograms and ultrasound of the breasts is "probably benign" and will be repeated in October.  But the upshot is NED status and my current doctor had the grace and humility to acknowledge that he could not have expected the chemo regimen that would have prescribed would have put me in any better place than I am now.  Having said all that, what I would say to you is to take your time and gather info and get a second opinion.  I am convinced that there is no reason to treat these situations as emergencies requiring an instant decision in response to one doctor's advice.  You don't say whether you've had your tumors biopsied.  You certainly should demand this.  It may be that your tissue can be tested to learn whether there is a chemo that will not work and one or more that will.  Find out also whether the receptor status of the cancer is estrogen and/or progesterone positive.  If it is progesterone receptor positive you are at least a possible candidate for hormone therapy.  The problem with progesterone therapy is while it is acknowledged that science supports some women and responsive to the therapy, there is no test to determine if it will work for you and there is science that indicates that even if it works, it eventually will not (the thought is that the progesterone receptor status degrades after some period of treatment).  Find out if your insurance has a special cancer care provision.  This may enable you to get a second opinion at a leading cancer care hospital outside of your network.  At my first diagnosis I went to Moffit in the Tampa, FL area and was satisfied.  Even if you can't go out of network, do some research and find out who are the best gynecological oncologists in your area.  Get a second opinion on biopsy, possible surgery, chemo and hormone therapy.  At both my diagnoses, I reacted in panic and did not do things in my interest that, with the benefit of hindsight, I wish I had.  For example, at the recurrence why I did not insist that the second tumor be biopsied I don't know.  I knew that it wasn't going to be radiated because it was being used as a "guinea pig" to see if the Provera worked.  That tumor is now gone, but as one US doctor said we can't be sure it was cancer at all because it wasn't biopsied. He was right.  So, try to calm down and go about getting a dependable diagnosis and treatment options that you can weigh and judge what has the best possible outcome for you.  Best wishes in your journey.  Oldbeauty

    Nailed It.

    Thanks OldBeauty, you nailed it.  I am panicking like mad.  I am sure I am frustrating my doctor but right now it is all about CURE.  I am not one to believe that only the US has the last say in cancer treatments and what works. I think getting on the Provera was a godsend for you and am glad it was made available.  Yes, I asked  about my progestrin reception and have not heard back.  I had a short consult, on Tuesday, yes you have recurrence and need radiation. 

    I agree with you and many of the ladies on the board (Kaleena and Helen) that I need a second opinion.  I will do so and go to Sinai as they are in Baltimore as well.  I have also contacted NIH for a brachytherapy study and they want my records.  I am scanning them in the system tonight.

    I live in Maryland but frankly would relocate to anywhere for treatment I feel is more agressive.  I know the protocols are to provide a standard of care, but when it fails you, boy!

    Now I want more than the standard protocol and I am letting everyone know.If my currrent gyn-oncologist does not agree with the assessment of more, then I am going to get another one.  It is OUR lives not theirs.

    Fighting Mad Prissy! 

     

     

  • oldbeauty
    oldbeauty Member Posts: 368 Member
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    Prissy777 said:

    Nailed It.

    Thanks OldBeauty, you nailed it.  I am panicking like mad.  I am sure I am frustrating my doctor but right now it is all about CURE.  I am not one to believe that only the US has the last say in cancer treatments and what works. I think getting on the Provera was a godsend for you and am glad it was made available.  Yes, I asked  about my progestrin reception and have not heard back.  I had a short consult, on Tuesday, yes you have recurrence and need radiation. 

    I agree with you and many of the ladies on the board (Kaleena and Helen) that I need a second opinion.  I will do so and go to Sinai as they are in Baltimore as well.  I have also contacted NIH for a brachytherapy study and they want my records.  I am scanning them in the system tonight.

    I live in Maryland but frankly would relocate to anywhere for treatment I feel is more agressive.  I know the protocols are to provide a standard of care, but when it fails you, boy!

    Now I want more than the standard protocol and I am letting everyone know.If my currrent gyn-oncologist does not agree with the assessment of more, then I am going to get another one.  It is OUR lives not theirs.

    Fighting Mad Prissy! 

     

     

    Don't forget Johns Hopkins

    Prissy, if you are in Maryland, also consider Johns Hopkins' Kimmel Cancer Center in Baltimore.  I lived there briefly before coming to Pittsburgh.  There is a doctor at Johns Hopkins named Amanda Nickles Fader.  She is the chief of the gyn oncology practice there and she has a special interest in endometrial cancer.  Also, Dr Sarah Temkin there, but I preferred Dr Fader and I saw them both.  In my experience, it is rare to find a gyn oncology doctor who specializes in endometrial cancer so I wanted to shout out to you about Dr Fader.  Regards, oldbeauty

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
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    Prissy777 said:

    Nailed It.

    Thanks OldBeauty, you nailed it.  I am panicking like mad.  I am sure I am frustrating my doctor but right now it is all about CURE.  I am not one to believe that only the US has the last say in cancer treatments and what works. I think getting on the Provera was a godsend for you and am glad it was made available.  Yes, I asked  about my progestrin reception and have not heard back.  I had a short consult, on Tuesday, yes you have recurrence and need radiation. 

    I agree with you and many of the ladies on the board (Kaleena and Helen) that I need a second opinion.  I will do so and go to Sinai as they are in Baltimore as well.  I have also contacted NIH for a brachytherapy study and they want my records.  I am scanning them in the system tonight.

    I live in Maryland but frankly would relocate to anywhere for treatment I feel is more agressive.  I know the protocols are to provide a standard of care, but when it fails you, boy!

    Now I want more than the standard protocol and I am letting everyone know.If my currrent gyn-oncologist does not agree with the assessment of more, then I am going to get another one.  It is OUR lives not theirs.

    Fighting Mad Prissy! 

     

     

    Good for you, Prissy, for expecting the best TX!

    Prissy, my gyne oncologist keeps talking to me about research (evidence) based results and I have to admit it does not indicate that I will live a long life. BUT- who knows, right? Chemo is not recommended for grade 1 cancer because it is only effective for aggressive, fast-growing cancer, at least a grade 2 or 3. It is NOT effective for slow growing, grade 1 cancers. If your cancer is progesterone or estrogen positive- think the garden-variety Endometriod adenocarcinoma, you may have a grade 1 cancer that can be treated with hormone therapy. However, this specific cancer can also be an aggressive grade 3 cancer.

     

    I hope you receive the best possible treatment , Prissy.

    Warm Wishes,

    Cathy

     

     

     

  • Prissy777
    Prissy777 Member Posts: 41 Member
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    Abbycat2 said:

    Good for you, Prissy, for expecting the best TX!

    Prissy, my gyne oncologist keeps talking to me about research (evidence) based results and I have to admit it does not indicate that I will live a long life. BUT- who knows, right? Chemo is not recommended for grade 1 cancer because it is only effective for aggressive, fast-growing cancer, at least a grade 2 or 3. It is NOT effective for slow growing, grade 1 cancers. If your cancer is progesterone or estrogen positive- think the garden-variety Endometriod adenocarcinoma, you may have a grade 1 cancer that can be treated with hormone therapy. However, this specific cancer can also be an aggressive grade 3 cancer.

     

    I hope you receive the best possible treatment , Prissy.

    Warm Wishes,

    Cathy

     

     

     

    Thanks Cathy

    I was wondering about that and even sent my dr. a note on progestrone therapy.  I wish he would put together a comprehensive treatment plan and not just say get radiation.  I have read terrible things about radiation and how it can affect a person for life http://www.expressnews.com/lifestyle/health-family/article/Cured-from-cancer-but-at-what-cost-6431691.php

    I would HIGHLY prefer to have progestrone therapy and brachytherapy and call it done.  I do not want overall pelvic radiation.  Thank so much Cathy..... Hugs, Prissy