To keep ovaries or not - new endo cancer, grade 1

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bluesmama
bluesmama Member Posts: 125 Member

Hello. I'm a newly diagnosed uterine cancer (endo adenocarcinoma, squamous differentiation). I've gone to two gyn oncologists and both offer slightly different options. Both encouraged me to test for Lynch because I got this way too young (40) and I don't "fit" the typical case. But one felt he could possibly use the pathology slides to determine whether I'm a carrier whereas the other one wanted to wait until after surgery and use the actual tumor. The one who thought it may be possible to grab that Lynch info suggested that I consider leaving my ovaries behind because my age and current stage indicates it as an option. Removing the ovaries at this young of an age not only exposes me to all the nasties of surgical menopause but the risk for heart disease, osteoporosis and cognitive disorders is high at a younger age. So it's an issue to me of do I want to live 20 years well or 30 years not so well. I also have a choice of going with a da vinci surgeon who is younger and has done "many" or a famous doctor who is older but admitted he's only done it for a few years although he has much more experience with lapro without robotics and open abdominal. One is at MSK and one is at NYU. Decisions. Decisions. So difficult.  

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  • Kaleena
    Kaleena Member Posts: 2,088 Member
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    decisions

    Hello Blues:

    It is really hard to make these decisions.  I was 45 years old when I was diagnosed with endo adenocarcinoma.   At that time, they did not test the tumors for Lynch Syndrome.  (2005).   I just had my original slides tested.  I still haven't heard yet.

    I was put into menopause at 44 with Lupron prior to my surgery for 7 months.   So technically I was in a medical menopause since then.  No big deal with me.  (I am now 54).  I am having issues now but its not from the menopause.   I just had a stent put in due to a long term side effect from the brachytherapy (urenal stent) causing scar tissues.  I also have a soft tissue mass which we have been watching (tested negative).

    I just wanted you to know that I had a complete hysterectomy.   Tubes, ovary uterus.   When they found cancer (after the fact), I went it for a staging surgery and they also removed my appendix and omentum (places for recurrence).  You may want to ask about having those items removed also.  To me, mentally, it was just better having everything removed.

    I say go for a third opinion and see which one fits the others.

    Wishing you the best.

    Kathy

  • bluesmama
    bluesmama Member Posts: 125 Member
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    Kaleena said:

    decisions

    Hello Blues:

    It is really hard to make these decisions.  I was 45 years old when I was diagnosed with endo adenocarcinoma.   At that time, they did not test the tumors for Lynch Syndrome.  (2005).   I just had my original slides tested.  I still haven't heard yet.

    I was put into menopause at 44 with Lupron prior to my surgery for 7 months.   So technically I was in a medical menopause since then.  No big deal with me.  (I am now 54).  I am having issues now but its not from the menopause.   I just had a stent put in due to a long term side effect from the brachytherapy (urenal stent) causing scar tissues.  I also have a soft tissue mass which we have been watching (tested negative).

    I just wanted you to know that I had a complete hysterectomy.   Tubes, ovary uterus.   When they found cancer (after the fact), I went it for a staging surgery and they also removed my appendix and omentum (places for recurrence).  You may want to ask about having those items removed also.  To me, mentally, it was just better having everything removed.

    I say go for a third opinion and see which one fits the others.

    Wishing you the best.

    Kathy

    Thanks for your response.

    Thanks for your response.  I'm terrified of post-surgical life.  :(  Possible chemo and/or radiation depending on staging. I want to believe it's a grade 1 as the biopsy indicates but I've already read one too many stories of that being inaccurate.  And the fact I waited so long now that I think about how long some of these symptoms have been going on makes me think I've had this cancer growing in my for a few years. Am I playing Russian roulette? 

    Although I'm only 40, I have been noticing symptoms of getting older already - grey hairs, hair falling out, a few hairs on my chin, skin getting less supple, more fat on the belly than I'd like, etc... so I wonder if I've been starting early. Not hot flashes although I sweat just sitting in the sun for a few minutes but that may be because I cut my hair short and it's just more noticeable.  I'd be interested to know if anyone decided to keep their ovaries with the hope of a more natural menopause. I will definitely inquire about the appendix and other areas. I never thought about that.

     

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,388 Member
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    Bluesmama, the unknown is the

    Bluesmama, the unknown is the scariest part.  I know I feared what was ahead and found out it was all very doable.  That doesn't help minimize your very real fear right now, but I would say to try to take this one step at a time. 

    My sister did read somewhere as she was doing research about uterine cancer and all its subsets, and she saw where it was younger women getting this.  I was 49 when diagnosed and thought that was yound even though I was knocking on "50s" door!

    As for your type of surgery I would say, right now you know you have cancer and there has been quite a controversy over power morcellation, which uses a device to cut uterine tissue into pieces before removal through small incisions made during minimally invasive surgery. It is thought that this type of chopping up releases the cancer in to your body and can cause problems in the future.  There are women who had hysterectomies this way and later developed cancer.  I don't know if the famous doctor does his laproscopics this way but it is worth asking.  It is worth asking about the da Vinci surgery as well.  (I had the da Vinci and plan on asking my gyn/onc when I see him in October)

    Keeping your ovaries would also depend on the TYPE of cancer you have.  Aggressive cancer like UPSC would love hormones to grow and since your ovaries have a lot to do with that - out they went on me!  As far as hot flashes - just like cancer - everyone is different and you just don't know until you get 'em.  I was concerned on what I could "take" if I had terrible hot flashes, hormones were out. 

    Please let us know your choice

  • bluesmama
    bluesmama Member Posts: 125 Member
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    Bluesmama, the unknown is the

    Bluesmama, the unknown is the scariest part.  I know I feared what was ahead and found out it was all very doable.  That doesn't help minimize your very real fear right now, but I would say to try to take this one step at a time. 

    My sister did read somewhere as she was doing research about uterine cancer and all its subsets, and she saw where it was younger women getting this.  I was 49 when diagnosed and thought that was yound even though I was knocking on "50s" door!

    As for your type of surgery I would say, right now you know you have cancer and there has been quite a controversy over power morcellation, which uses a device to cut uterine tissue into pieces before removal through small incisions made during minimally invasive surgery. It is thought that this type of chopping up releases the cancer in to your body and can cause problems in the future.  There are women who had hysterectomies this way and later developed cancer.  I don't know if the famous doctor does his laproscopics this way but it is worth asking.  It is worth asking about the da Vinci surgery as well.  (I had the da Vinci and plan on asking my gyn/onc when I see him in October)

    Keeping your ovaries would also depend on the TYPE of cancer you have.  Aggressive cancer like UPSC would love hormones to grow and since your ovaries have a lot to do with that - out they went on me!  As far as hot flashes - just like cancer - everyone is different and you just don't know until you get 'em.  I was concerned on what I could "take" if I had terrible hot flashes, hormones were out. 

    Please let us know your choice

    Glimpses of the first week

    Glimpses of the first week from me and in one sense a response too that I hope will provide some insight as to what we're going through for those watching like friends and family:

    The young part makes me feel like a lab rat. I guess the number of cases in someone who is 40 is rare enough to warrant attention. Hell, being identified just by your full name and DOB everywhere I go feels strange too.

    Having multiple doctors, med students and a nurse observe during your pelvic was upsetting the first time but by the second time it was almost amusing. After the second pelvic with doctor#2, the doctor asked if I wanted everyone to leave the room so I could change. I was like, "What for? You all saw my lady bits. There's not much to hide anymore." I was more than happy to slip my panties back on with them in the room. And while I'm trying to keep my sense of humor by calling them gyno orgies, let's be honest, I'd rather not be part of this. :)

    Sitting in the waiting room yesterday in a very busy gynecologic cancer center where I was the only one who looked like a "kid" in my shabby shorts and T-shirt was distressing to say the least. Not to sound like a Debbie downer, but I've quickly realized that the biopsy (I had the pipette) can only confirm that you have cancer. I know that they're mostly accurate, yada yada, but the only thing that really is certain is that I have cancer and that it isn't until staging after surgery when I find out what I really have. So while Grade 1, endometrial adenocarcinoma, endometrioid with squamous differentiation sounds like a low grade cancer, and I've been ignoring all the info for the other types for now, I'm preparing myself for a completely different final diagnosis. 

    As for the option to keep the ovaries, I'm glad he mentioned it but it did plant another decision and another seed for stress. When you've ended up on the wrong end of the statistics multiple times in a matter of months, you start to second guess every decision you make. If it's possible to test the existing biopsy slides, I'm going to go through genetic counseling so that at least I can make an informed decision. Having the Lynch mutation does put you at risk for recurrence at about 12% for ovarian cancer. But what's worse is the 80% risk for colon cancer on top of that. If they end up not being able to use the slides for pre-surgical testing, then I'll probably get rid of the ovaries. I'll let you know. Part of me wants to take the risk because I'm generally a risk taker but cancer is a different ball game. 

    On my way out of the hospital, there was a very old lady who was pushing the wheelchair of her husband off of the elevator yesterday who turned around and looked at us before the door closed and said, "Good luck" to all of us. That made my heart skip a beat. I looked around the elevator and realized, these people are all patients and so am I now.

    All the studies and Googling doesn't change that I have to start accepting that I'm living with this disease. The information I find online, if anything, has made me feel worse, rather than better. So I'm not sure if it's worth putting too much weight into what I find. Yesterday, was the first day I actually thought about "fighting" this rather than being scared and crying over this. But I'm sure we have all gone into this journey with as much information as we can digest. 

    I'll be reading a lot of the threads on this forum over the weekend. If you have any questions, please don't hesitate to ask. And please, if you notice anything strange about your menstrual cycles especially if you're having heavy, clotting periods, with irregular cycles, do yourself a favor and go through all of the tests, especially the biopsy. I delayed the biopsy a month and regret it. I delayed seeing anyone for the clots that started a few years ago. I regret that too. 

     

  • StrongerthanIthought
    Options
    bluesmama said:

    Glimpses of the first week

    Glimpses of the first week from me and in one sense a response too that I hope will provide some insight as to what we're going through for those watching like friends and family:

    The young part makes me feel like a lab rat. I guess the number of cases in someone who is 40 is rare enough to warrant attention. Hell, being identified just by your full name and DOB everywhere I go feels strange too.

    Having multiple doctors, med students and a nurse observe during your pelvic was upsetting the first time but by the second time it was almost amusing. After the second pelvic with doctor#2, the doctor asked if I wanted everyone to leave the room so I could change. I was like, "What for? You all saw my lady bits. There's not much to hide anymore." I was more than happy to slip my panties back on with them in the room. And while I'm trying to keep my sense of humor by calling them gyno orgies, let's be honest, I'd rather not be part of this. :)

    Sitting in the waiting room yesterday in a very busy gynecologic cancer center where I was the only one who looked like a "kid" in my shabby shorts and T-shirt was distressing to say the least. Not to sound like a Debbie downer, but I've quickly realized that the biopsy (I had the pipette) can only confirm that you have cancer. I know that they're mostly accurate, yada yada, but the only thing that really is certain is that I have cancer and that it isn't until staging after surgery when I find out what I really have. So while Grade 1, endometrial adenocarcinoma, endometrioid with squamous differentiation sounds like a low grade cancer, and I've been ignoring all the info for the other types for now, I'm preparing myself for a completely different final diagnosis. 

    As for the option to keep the ovaries, I'm glad he mentioned it but it did plant another decision and another seed for stress. When you've ended up on the wrong end of the statistics multiple times in a matter of months, you start to second guess every decision you make. If it's possible to test the existing biopsy slides, I'm going to go through genetic counseling so that at least I can make an informed decision. Having the Lynch mutation does put you at risk for recurrence at about 12% for ovarian cancer. But what's worse is the 80% risk for colon cancer on top of that. If they end up not being able to use the slides for pre-surgical testing, then I'll probably get rid of the ovaries. I'll let you know. Part of me wants to take the risk because I'm generally a risk taker but cancer is a different ball game. 

    On my way out of the hospital, there was a very old lady who was pushing the wheelchair of her husband off of the elevator yesterday who turned around and looked at us before the door closed and said, "Good luck" to all of us. That made my heart skip a beat. I looked around the elevator and realized, these people are all patients and so am I now.

    All the studies and Googling doesn't change that I have to start accepting that I'm living with this disease. The information I find online, if anything, has made me feel worse, rather than better. So I'm not sure if it's worth putting too much weight into what I find. Yesterday, was the first day I actually thought about "fighting" this rather than being scared and crying over this. But I'm sure we have all gone into this journey with as much information as we can digest. 

    I'll be reading a lot of the threads on this forum over the weekend. If you have any questions, please don't hesitate to ask. And please, if you notice anything strange about your menstrual cycles especially if you're having heavy, clotting periods, with irregular cycles, do yourself a favor and go through all of the tests, especially the biopsy. I delayed the biopsy a month and regret it. I delayed seeing anyone for the clots that started a few years ago. I regret that too. 

     

     I agree with you completely

     I agree with you completely about getting symptoms checked at first sign!  However, eventhough that is exactly what I did, my cancer was already at stage 3.  Don't beat yourself up about delaying.  There are more important things to concentrate on now.  I'm being tested for Lynch also.  My tumor was tested and showed two of the four proteins are absent. Pretty good sign that I have it. Next will be DNA testing but that won't be until Sept 5. 

    Barb

     

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    Options
    bluesmama said:

    Glimpses of the first week

    Glimpses of the first week from me and in one sense a response too that I hope will provide some insight as to what we're going through for those watching like friends and family:

    The young part makes me feel like a lab rat. I guess the number of cases in someone who is 40 is rare enough to warrant attention. Hell, being identified just by your full name and DOB everywhere I go feels strange too.

    Having multiple doctors, med students and a nurse observe during your pelvic was upsetting the first time but by the second time it was almost amusing. After the second pelvic with doctor#2, the doctor asked if I wanted everyone to leave the room so I could change. I was like, "What for? You all saw my lady bits. There's not much to hide anymore." I was more than happy to slip my panties back on with them in the room. And while I'm trying to keep my sense of humor by calling them gyno orgies, let's be honest, I'd rather not be part of this. :)

    Sitting in the waiting room yesterday in a very busy gynecologic cancer center where I was the only one who looked like a "kid" in my shabby shorts and T-shirt was distressing to say the least. Not to sound like a Debbie downer, but I've quickly realized that the biopsy (I had the pipette) can only confirm that you have cancer. I know that they're mostly accurate, yada yada, but the only thing that really is certain is that I have cancer and that it isn't until staging after surgery when I find out what I really have. So while Grade 1, endometrial adenocarcinoma, endometrioid with squamous differentiation sounds like a low grade cancer, and I've been ignoring all the info for the other types for now, I'm preparing myself for a completely different final diagnosis. 

    As for the option to keep the ovaries, I'm glad he mentioned it but it did plant another decision and another seed for stress. When you've ended up on the wrong end of the statistics multiple times in a matter of months, you start to second guess every decision you make. If it's possible to test the existing biopsy slides, I'm going to go through genetic counseling so that at least I can make an informed decision. Having the Lynch mutation does put you at risk for recurrence at about 12% for ovarian cancer. But what's worse is the 80% risk for colon cancer on top of that. If they end up not being able to use the slides for pre-surgical testing, then I'll probably get rid of the ovaries. I'll let you know. Part of me wants to take the risk because I'm generally a risk taker but cancer is a different ball game. 

    On my way out of the hospital, there was a very old lady who was pushing the wheelchair of her husband off of the elevator yesterday who turned around and looked at us before the door closed and said, "Good luck" to all of us. That made my heart skip a beat. I looked around the elevator and realized, these people are all patients and so am I now.

    All the studies and Googling doesn't change that I have to start accepting that I'm living with this disease. The information I find online, if anything, has made me feel worse, rather than better. So I'm not sure if it's worth putting too much weight into what I find. Yesterday, was the first day I actually thought about "fighting" this rather than being scared and crying over this. But I'm sure we have all gone into this journey with as much information as we can digest. 

    I'll be reading a lot of the threads on this forum over the weekend. If you have any questions, please don't hesitate to ask. And please, if you notice anything strange about your menstrual cycles especially if you're having heavy, clotting periods, with irregular cycles, do yourself a favor and go through all of the tests, especially the biopsy. I delayed the biopsy a month and regret it. I delayed seeing anyone for the clots that started a few years ago. I regret that too. 

     

    Dear Blues:Don't beat

    Dear Blues:

    Don't beat yourself up over not getting things checked out any earlier.   You may have gotten the run around anyway due to your age.   I was having certain symptoms and I kept going to my PCP for answers.  I was having bowel issues, etc.   My PCP said I was probably depressed but he also ordered me a colonoscopy.  My colonoscopy was fine but I was still having symptoms - burping, bloating, bowel pains.   I went to my gyne who did an internal ultrasound - only found a tilted uterus and a deep ovary.  He also did a laparoscopy wherein he said it was just severe endometriosis and that I needed a hysterectomy.   I was put on Lupron for six month to help with the surgery.

    After my hysterctomy, I went back for my check-up.  I was told then that they found cancer in my uterus and in my left ovary.     I had reached out over a year trying to get answers.  I knew in January of 2004 that something was wrong and didn't have my surgery until Sept. 2005.    Even with certain tests, they weren't able to determine I had cancer.   I was diagnosed with Grade 2 Stage IIIa endometrial adenocarcinoma.    However, they weren't able to determine where it originated from.

    Just be your own advocate.  You don't need tests and stuff to know how you feel.   Everyone is different.  Although they base diagnoses and symptoms on a "basic" outline, I, for one, don't fit that outline.   I went to a urologist four months ago who said I didn't exhibit any signs of a blockage (although PET scan showed narrowing), he refused to place a stent.  Less than four months later, the blockage is more and the kidney is stressed but I still didn't exhibit any symptoms of a blockage but yesterday I got a stent put in and the doctor said it was like a river of water that flowed once the stent was placed.  By the way, I went to a completely different urologist.

    Its good too that you have humor.  You have to when dealing with this.

    My best to you.

    Kathy

     

    P.S.  I just got my lynch test back today - it was negative.   (however, I am surprised that they tested my slides back from 2005 - I didn't know they lasted that long)

  • bluesmama
    bluesmama Member Posts: 125 Member
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     I agree with you completely

     I agree with you completely about getting symptoms checked at first sign!  However, eventhough that is exactly what I did, my cancer was already at stage 3.  Don't beat yourself up about delaying.  There are more important things to concentrate on now.  I'm being tested for Lynch also.  My tumor was tested and showed two of the four proteins are absent. Pretty good sign that I have it. Next will be DNA testing but that won't be until Sept 5. 

    Barb

     

    Good luck on the testing.

    Question. When you say Stage 3, what type of cancer were you diagnosed with?  What grade? Like many of you (I'm guessing), you went through all of the possible combinations of grade/stage to figure out likely treatment, prognosis, etc. My first onc said, since it was first diagnosed as Grade 1, it will likely stay that way - a good thing. My inner voice's response was, "yeah, that's what my gyno said when she said the likelihood of this being cancer was extremely low given my age. Look at me now."

    I've Googled "grade 1, stage 3/4 endometrial adenocarcinoma" and haven't gotten any good leads. Most searches seem to dump out "grade 1, stage 1/2." There's got to be cases of the former. 

    I know I shouldn't beat myself up over this but it's so difficult not to. Woulda, coulda, shoulda.

  • bluesmama
    bluesmama Member Posts: 125 Member
    Options
    Kaleena said:

    Dear Blues:Don't beat

    Dear Blues:

    Don't beat yourself up over not getting things checked out any earlier.   You may have gotten the run around anyway due to your age.   I was having certain symptoms and I kept going to my PCP for answers.  I was having bowel issues, etc.   My PCP said I was probably depressed but he also ordered me a colonoscopy.  My colonoscopy was fine but I was still having symptoms - burping, bloating, bowel pains.   I went to my gyne who did an internal ultrasound - only found a tilted uterus and a deep ovary.  He also did a laparoscopy wherein he said it was just severe endometriosis and that I needed a hysterectomy.   I was put on Lupron for six month to help with the surgery.

    After my hysterctomy, I went back for my check-up.  I was told then that they found cancer in my uterus and in my left ovary.     I had reached out over a year trying to get answers.  I knew in January of 2004 that something was wrong and didn't have my surgery until Sept. 2005.    Even with certain tests, they weren't able to determine I had cancer.   I was diagnosed with Grade 2 Stage IIIa endometrial adenocarcinoma.    However, they weren't able to determine where it originated from.

    Just be your own advocate.  You don't need tests and stuff to know how you feel.   Everyone is different.  Although they base diagnoses and symptoms on a "basic" outline, I, for one, don't fit that outline.   I went to a urologist four months ago who said I didn't exhibit any signs of a blockage (although PET scan showed narrowing), he refused to place a stent.  Less than four months later, the blockage is more and the kidney is stressed but I still didn't exhibit any symptoms of a blockage but yesterday I got a stent put in and the doctor said it was like a river of water that flowed once the stent was placed.  By the way, I went to a completely different urologist.

    Its good too that you have humor.  You have to when dealing with this.

    My best to you.

    Kathy

     

    P.S.  I just got my lynch test back today - it was negative.   (however, I am surprised that they tested my slides back from 2005 - I didn't know they lasted that long)

    I saw your post about your stent and...

    I can't believe the hurdles you had to go through to get your symptoms taken seriously. I could barely keep it together every time I ended up in someone's voicemail box while trying to transfer records from one hospital to another. I had to allow my friend to step in and use her community connections to get me to a live person on the other end. The other hospital I've now decided to continue treatment with including the surgery is much more responsive but that is probably because cancer is their only business. So when they ask for something, they probably really need it. The previous hospital is competent but they deal with many other pathology slides and radiology images unrelated to cancer. Perhaps, they didn't understand the urgency. Perhaps, they're under-resourced. I'll never know as the whole ordeal was enough for me to switch immediately.

    Now that my friends and most of my immediate family know my diagnosis, some have shared with me their symptoms. At least one has been having the same as mine and has refused to get a biopsy even though it was recommended. She finally told me tonight that she has an appointment next Friday after our mutual friends urged her to get tested already. Among my circle of friends, we have already lost a number to cancer. We have more that are living with cancer today. I'm currently haunted by a moment I had with one acquaintance I met a few years ago at a memorial. I will never forget that look in her eyes. It was something much deeper than the sadness for a lost friend to cancer. I learned later that she had been diagnosed with an inoperable cancer the day of the memorial and passed 8 months later. 

    I've read a number of your posts. I'm so grateful for such positive energy. Some of the other forums I've visited just didn't have the same good vibes as this one does and I'm sure it has everything to do with individuals like you. Thank you.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,388 Member
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    bluesmama said:

    Good luck on the testing.

    Question. When you say Stage 3, what type of cancer were you diagnosed with?  What grade? Like many of you (I'm guessing), you went through all of the possible combinations of grade/stage to figure out likely treatment, prognosis, etc. My first onc said, since it was first diagnosed as Grade 1, it will likely stay that way - a good thing. My inner voice's response was, "yeah, that's what my gyno said when she said the likelihood of this being cancer was extremely low given my age. Look at me now."

    I've Googled "grade 1, stage 3/4 endometrial adenocarcinoma" and haven't gotten any good leads. Most searches seem to dump out "grade 1, stage 1/2." There's got to be cases of the former. 

    I know I shouldn't beat myself up over this but it's so difficult not to. Woulda, coulda, shoulda.

    You ask a good question

    You ask a good question because typcially the women here define their cancer as GRADE and STAGE.

    Grade 1 is low grade 3 is high.  Agressive cancers are automatically a grade 3.  Stage is how  far it is found to have advanced in your body.  1a is very early and hardly anywhere and 3/4 has spread.  With that said you can start doing the math in your head on how many variables you can have. 

    Not nothing anythiing about cancer I remember being told it was Grade 3 and I asked "what is the highest grade?" and lost in thought when she said "3".  I didn't know about Staging then.  

    As the others ladies said, please don't beat yourself up.  You are doing something about it now and that is what you have to go with.

     

  • Kaleena
    Kaleena Member Posts: 2,088 Member
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    bluesmama said:

    I saw your post about your stent and...

    I can't believe the hurdles you had to go through to get your symptoms taken seriously. I could barely keep it together every time I ended up in someone's voicemail box while trying to transfer records from one hospital to another. I had to allow my friend to step in and use her community connections to get me to a live person on the other end. The other hospital I've now decided to continue treatment with including the surgery is much more responsive but that is probably because cancer is their only business. So when they ask for something, they probably really need it. The previous hospital is competent but they deal with many other pathology slides and radiology images unrelated to cancer. Perhaps, they didn't understand the urgency. Perhaps, they're under-resourced. I'll never know as the whole ordeal was enough for me to switch immediately.

    Now that my friends and most of my immediate family know my diagnosis, some have shared with me their symptoms. At least one has been having the same as mine and has refused to get a biopsy even though it was recommended. She finally told me tonight that she has an appointment next Friday after our mutual friends urged her to get tested already. Among my circle of friends, we have already lost a number to cancer. We have more that are living with cancer today. I'm currently haunted by a moment I had with one acquaintance I met a few years ago at a memorial. I will never forget that look in her eyes. It was something much deeper than the sadness for a lost friend to cancer. I learned later that she had been diagnosed with an inoperable cancer the day of the memorial and passed 8 months later. 

    I've read a number of your posts. I'm so grateful for such positive energy. Some of the other forums I've visited just didn't have the same good vibes as this one does and I'm sure it has everything to do with individuals like you. Thank you.

    Thanks for your kind words

    Blue:

    Thanks for your kind words.   It was through this site that I learned so many things and what to ask doctors.  It has helped me tremendously.  Even if I didn't respond to a post, I read what they were saying and applied stuff that fit my condition.   I was always a back seater but now I take control.  I've learned that doctors are there to give you advice as they see it.   We are the ones that really make the decisions.   Some doctors are well for that; others will tell you they wont treat you.   I love the doctors that gives you options.

    When I was diagnosed, I thought it was the end of the world.   I too lost friends during that time who were in their 30s and 40s.  Not to cancer, but to other things.   Then I learned to take things one day at a time.  Sure, I have set backs.  Every once in a while I get the "i feel sorry for myself".   I'll have my cry.  Then get on with life.

    I guess what I am trying to say is that we are here for you, Blue.   Sometimes we just want to rant about stuff that we don't want to tell our friends and family.  This is a good place to do that and we need to do that at times.

    Thinking of you.

    Kathy

  • Ardnasnit
    Ardnasnit Member Posts: 29 Member
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    Hi Blue,

    I am 39, and was

    Hi Blue,

    I am 39, and was diagnosed at the end of May with endometrial adenocarcinoma, grade 1 at time of diagnosis. My gyn/onc gave me 2 different treatment options because of my age. One option was surgery and she strongly suggested the removal of the ovaries, but she would leave it up to me. It is definitely a hard decision and is really up to the individual. I in the end had them removed but I didn’t make that choice lightly. I had my surgery and staging in June. After my surgery the pathology report came back as grade 2, stage 1a. So I started chemo in July.

    At my chemo session I felt like a kid. I was the youngest there by at least 15 years. The great thing was they were all willing to talk and give me advice.

    If you have questions or need to talk feel free to email me. I will be happy to listen and talk.

    Sandra

  • bluesmama
    bluesmama Member Posts: 125 Member
    Options
    Ardnasnit said:

    Hi Blue,

    I am 39, and was

    Hi Blue,

    I am 39, and was diagnosed at the end of May with endometrial adenocarcinoma, grade 1 at time of diagnosis. My gyn/onc gave me 2 different treatment options because of my age. One option was surgery and she strongly suggested the removal of the ovaries, but she would leave it up to me. It is definitely a hard decision and is really up to the individual. I in the end had them removed but I didn’t make that choice lightly. I had my surgery and staging in June. After my surgery the pathology report came back as grade 2, stage 1a. So I started chemo in July.

    At my chemo session I felt like a kid. I was the youngest there by at least 15 years. The great thing was they were all willing to talk and give me advice.

    If you have questions or need to talk feel free to email me. I will be happy to listen and talk.

    Sandra

    Welcome to the club

    I'm sorry to hear that, Sandra. I hope you're holding up well with chemo. How have you been feeling with the instant menopause combined with the chemo? How was your recovery? Did you have robotics surgery?

  • StrongerthanIthought
    Options
    bluesmama said:

    Good luck on the testing.

    Question. When you say Stage 3, what type of cancer were you diagnosed with?  What grade? Like many of you (I'm guessing), you went through all of the possible combinations of grade/stage to figure out likely treatment, prognosis, etc. My first onc said, since it was first diagnosed as Grade 1, it will likely stay that way - a good thing. My inner voice's response was, "yeah, that's what my gyno said when she said the likelihood of this being cancer was extremely low given my age. Look at me now."

    I've Googled "grade 1, stage 3/4 endometrial adenocarcinoma" and haven't gotten any good leads. Most searches seem to dump out "grade 1, stage 1/2." There's got to be cases of the former. 

    I know I shouldn't beat myself up over this but it's so difficult not to. Woulda, coulda, shoulda.

    Sorry, I guess I should have

    Sorry, I guess I should have given more info in my reply.  I was diagnosed with endrometroid adenocarcinoma stage 3C grade 2.  My regular ob/gyn could tell nothing wrong during regular exam, but, since I had spotting, she did a biopsy.  It came back saying cancer & to check my lymph nodes. I had a hysterectomy. The pathology rreports gave my stage 3 diagnosis.  I think even the gyn/onc was surprized it had gotten so bad so fast - he seemed so upbeat in hospital - saying he had gotten all cancer he could see. But it had spread over half way thru uterus and into lymph nodes.  So chemo. external radiation & internal radiation were scheduled.  I have finished chemo and some of the external radiation. Just recently it was decided to skip the internal and add more external treatments.  I know the worry and fear are overwhelming right now BUT it does get better. Still there but better. It helps when treatment starts - you realize you can do it and now you are fighting!

    Barb

  • bluesmama
    bluesmama Member Posts: 125 Member
    Options

    Sorry, I guess I should have

    Sorry, I guess I should have given more info in my reply.  I was diagnosed with endrometroid adenocarcinoma stage 3C grade 2.  My regular ob/gyn could tell nothing wrong during regular exam, but, since I had spotting, she did a biopsy.  It came back saying cancer & to check my lymph nodes. I had a hysterectomy. The pathology rreports gave my stage 3 diagnosis.  I think even the gyn/onc was surprized it had gotten so bad so fast - he seemed so upbeat in hospital - saying he had gotten all cancer he could see. But it had spread over half way thru uterus and into lymph nodes.  So chemo. external radiation & internal radiation were scheduled.  I have finished chemo and some of the external radiation. Just recently it was decided to skip the internal and add more external treatments.  I know the worry and fear are overwhelming right now BUT it does get better. Still there but better. It helps when treatment starts - you realize you can do it and now you are fighting!

    Barb

    You're in my thoughts Barb!
    I

    You're in my thoughts Barb!

    I now realize there's any army of survivors before me. I've read nearly every thread in this forum. All of you inspire me to fight. I met up with some friends today who I haven't updated as well as my closest friends. As awkward as it felt for them and myself... and good lord, I've quickly realized, I can't contain the cancer news at all from people... I'm ok when they ask if "I'm doing ok." 

  • Ardnasnit
    Ardnasnit Member Posts: 29 Member
    Options
    bluesmama said:

    Welcome to the club

    I'm sorry to hear that, Sandra. I hope you're holding up well with chemo. How have you been feeling with the instant menopause combined with the chemo? How was your recovery? Did you have robotics surgery?

     
    Hi Blue,
     
    I had a Vaginal

     

    Hi Blue,

     

    I had a Vaginal Laparoscopy Total Hysterectomy, which included cervix, tubes and ovaries. My recovery from surgery was pretty close to textbook. I didn’t have any issues with my recovery. I was out of work for four weeks. I was sore and tired for most of that time. I was still slightly sore when I went back to work. After my surgery my gyn/onc was upbeat and thought that surgery was all I would need. At my first post op appointment my doctor told me that the pathology report came back and said the cancer had spread to my myometrium and the pelvic wash came back positive for cancer. Since it had spread and since the pelvic wash came back positive that lead to the need for chemo and internal radiation.

     

    I am doing the 6 rounds of chemo first and then I will do the radiation. My first round of chemo went pretty well except I had a reaction to Taxol. So they stopped the taxol drip and gave me more steroids. Once the steroids were done they started the Taxol back up at a slower drip and I was fine. After chemo I have had very few side effects so far. I go for my second round of chemo this coming Friday and am hoping that the side effects aren’t any worse.

     

    As for instant menopause I haven’t had many issues with that yet either. I do have night sweats from time to time but so far nothing too bad. I am not taking any estrogen since my cancer is hormone based. My doctor did tell me that if my symptoms got too bad she could prescribe a synthetic hormone to help but so far I haven’t needed it.

     

    To be honest with you the worse part of this whole thing is that I haven’t been able to (until just recently) babysit my nieces and nephews.

     

    I have a great support system of family and friends. This discussion board has also helped me out so much. I have read many posts. In fact when my brain wouldn’t turn off I found reading the threads far more informative and less scary then searching the internet for answers. I have also visited the chatroom and that has many people from other discussion boards that have valuable insight as well.

     

    I am praying for you.

     

    Sandra

     

  • DebiR
    DebiR Member Posts: 38 Member
    Options
    Ardnasnit said:

     
    Hi Blue,
     
    I had a Vaginal

     

    Hi Blue,

     

    I had a Vaginal Laparoscopy Total Hysterectomy, which included cervix, tubes and ovaries. My recovery from surgery was pretty close to textbook. I didn’t have any issues with my recovery. I was out of work for four weeks. I was sore and tired for most of that time. I was still slightly sore when I went back to work. After my surgery my gyn/onc was upbeat and thought that surgery was all I would need. At my first post op appointment my doctor told me that the pathology report came back and said the cancer had spread to my myometrium and the pelvic wash came back positive for cancer. Since it had spread and since the pelvic wash came back positive that lead to the need for chemo and internal radiation.

     

    I am doing the 6 rounds of chemo first and then I will do the radiation. My first round of chemo went pretty well except I had a reaction to Taxol. So they stopped the taxol drip and gave me more steroids. Once the steroids were done they started the Taxol back up at a slower drip and I was fine. After chemo I have had very few side effects so far. I go for my second round of chemo this coming Friday and am hoping that the side effects aren’t any worse.

     

    As for instant menopause I haven’t had many issues with that yet either. I do have night sweats from time to time but so far nothing too bad. I am not taking any estrogen since my cancer is hormone based. My doctor did tell me that if my symptoms got too bad she could prescribe a synthetic hormone to help but so far I haven’t needed it.

     

    To be honest with you the worse part of this whole thing is that I haven’t been able to (until just recently) babysit my nieces and nephews.

     

    I have a great support system of family and friends. This discussion board has also helped me out so much. I have read many posts. In fact when my brain wouldn’t turn off I found reading the threads far more informative and less scary then searching the internet for answers. I have also visited the chatroom and that has many people from other discussion boards that have valuable insight as well.

     

    I am praying for you.

     

    Sandra

     

    I had a reaction to Taxol also

    Hi Sandra,

    I had a reaction to the Taxol also.  They did the same, stopped the drip, gave me some more of something and then restarted it slower and all was fine.  The second round they gave me more Benadryl and maybe something else to start and started the drip slower (25%) again but I still reacted to it.  They just stopped it and restarted this time. Not as bad as the first time but after that they said they wouldn't attempt Taxol again.  I was disappointed because I'm in the GOG-0258 trial and carbo/taxol is required for me to stay in the trial.  

    I found that the Cleveland Clinic had developed a desensitization protocol for patient’s experiencing a second hypersensitivity reaction to Taxol so I talked to the research nurse assigned to my case about it.   She said that she was familiar with it and would check with my doctor.  I found out on Friday that they are going to give this a try so I will get at least one more round of Carbo/Taxol.  I sure hope this works because I want to stay in the study and I feel that Carbo/Taxol is the best combination available for me.  

    Debi

    UPSC 3A

  • Ro10
    Ro10 Member Posts: 1,561 Member
    Options
    Ardnasnit said:

     
    Hi Blue,
     
    I had a Vaginal

     

    Hi Blue,

     

    I had a Vaginal Laparoscopy Total Hysterectomy, which included cervix, tubes and ovaries. My recovery from surgery was pretty close to textbook. I didn’t have any issues with my recovery. I was out of work for four weeks. I was sore and tired for most of that time. I was still slightly sore when I went back to work. After my surgery my gyn/onc was upbeat and thought that surgery was all I would need. At my first post op appointment my doctor told me that the pathology report came back and said the cancer had spread to my myometrium and the pelvic wash came back positive for cancer. Since it had spread and since the pelvic wash came back positive that lead to the need for chemo and internal radiation.

     

    I am doing the 6 rounds of chemo first and then I will do the radiation. My first round of chemo went pretty well except I had a reaction to Taxol. So they stopped the taxol drip and gave me more steroids. Once the steroids were done they started the Taxol back up at a slower drip and I was fine. After chemo I have had very few side effects so far. I go for my second round of chemo this coming Friday and am hoping that the side effects aren’t any worse.

     

    As for instant menopause I haven’t had many issues with that yet either. I do have night sweats from time to time but so far nothing too bad. I am not taking any estrogen since my cancer is hormone based. My doctor did tell me that if my symptoms got too bad she could prescribe a synthetic hormone to help but so far I haven’t needed it.

     

    To be honest with you the worse part of this whole thing is that I haven’t been able to (until just recently) babysit my nieces and nephews.

     

    I have a great support system of family and friends. This discussion board has also helped me out so much. I have read many posts. In fact when my brain wouldn’t turn off I found reading the threads far more informative and less scary then searching the internet for answers. I have also visited the chatroom and that has many people from other discussion boards that have valuable insight as well.

     

    I am praying for you.

     

    Sandra

     

    Sandra

    Welcome to the site.  Wishing you luck with your second round of chemo.  I too had a reaction to my first taxol.  I could never get it at the regular rate, but at a slow rate I have had 19 cycles of taxol.  

    I guess by now you have lost your hair.  I hope you are adjusting to that.  Glad you have a great support system.  That makes things much easier.  glad you are finding the posts from this discussion board helpful.  It is current and real time information.   It is less scary than outdated internet statistics.  

    Good luck on Friday with chemo number two.  I hope your blood counts stay up so you can enjoy your nieces and nephews.   In peace and caring.

  • Ro10
    Ro10 Member Posts: 1,561 Member
    Options
    DebiR said:

    I had a reaction to Taxol also

    Hi Sandra,

    I had a reaction to the Taxol also.  They did the same, stopped the drip, gave me some more of something and then restarted it slower and all was fine.  The second round they gave me more Benadryl and maybe something else to start and started the drip slower (25%) again but I still reacted to it.  They just stopped it and restarted this time. Not as bad as the first time but after that they said they wouldn't attempt Taxol again.  I was disappointed because I'm in the GOG-0258 trial and carbo/taxol is required for me to stay in the trial.  

    I found that the Cleveland Clinic had developed a desensitization protocol for patient’s experiencing a second hypersensitivity reaction to Taxol so I talked to the research nurse assigned to my case about it.   She said that she was familiar with it and would check with my doctor.  I found out on Friday that they are going to give this a try so I will get at least one more round of Carbo/Taxol.  I sure hope this works because I want to stay in the study and I feel that Carbo/Taxol is the best combination available for me.  

    Debi

    UPSC 3A

    Debi

    Hope you are able to get your third  taxol and remain in the study.  Hope you continue to well.  In peace and caring.

  • Ro10
    Ro10 Member Posts: 1,561 Member
    Options
    bluesmama said:

    Welcome to the club

    I'm sorry to hear that, Sandra. I hope you're holding up well with chemo. How have you been feeling with the instant menopause combined with the chemo? How was your recovery? Did you have robotics surgery?

    Blues mama

    Welcome to the site and sorry you have to be here.  You have some difficult decisions to make before your surgery and then after surgery.  I had robotic surgery and recovery was very quick.  I was in the hospital only overnight.   My staging came back UPSC stage 3-C, high grade.  

    The fear of the unknown is great.  I had never had surgery before, so I did not know what to expect.  I had minimal pain.  I started chemo 3 weeks after surgery.  It was very doable, too.  The fear of the unknown was there, too.  I had the sandwich treatment of chemo, radiation, chemo.  All of it was much better than anticipated.  

    Wishing you luck in making your decisions.  In peace and caring.  

  • bluesmama
    bluesmama Member Posts: 125 Member
    Options
    I got dates

    The doctor called back and the dates offered are a lot sooner than my first oncologist's. By Sept. 1 I will have given birth to my uterus and that's the only thing I'm ever giving birth to. I'm trying to keep my sense of humor about this. I've never wanted to bear children so I'm not particularly upset about the up-coming loss. A uterus birthday party maybe? I don't mean to offend anyone who has had to make the tough decision while wanting to have children. They asked me repeatedly whether I wanted to try non-surgical methods of treatment first in case I want to preserve my fertility or harvest eggs but I've been emphatic about surgery. I've had such a horrible relationship with this broken uterus the last 5 years that I'm looking forward to not buying pads in bulk, doubling up with tampons, the anemia, and worrying about clots falling out in public.

    I still have to figure out the ovaries situation but the ball has started rolling. Now to figure out when to tell my parents. I haven't told them yet because they are going through some very serious health issues themselves and I worry the stress will send them over the edge. My siblings know and have been very supportive. Most of my friends have been supportive too. Cancer really does weed out who your friends really are when you need it the most and sometimes, the support doesn't come from those who are closest to you. The radio silence from some was very disappointing but I'm not going to get upset over that loss.