Which UPSC Sisters haven't found us yet in our new site location?

1356

Comments

  • daisy366
    daisy366 Member Posts: 1,458 Member
    Ro10 said:

    Daisy, feel free to express what ever you need to
    None of us know what our prognosis is. We are all hoping and praying that whatever our treatment plan is, it is going to work for us. You are right that it is a very serious disease, but they make progress every day with the treatment of cancer. So we all need to have hope. Sorry to hear you need to get a new doctor. I too will be getting new doctors when I go back to Illinois. It is scary to be switching doctors, when I have confidence in the one here in Florida. I am glad you trust your onocology nurse. They are great resources and can calm many of your fears. They are used to getting many phone calls. I too wanted to lose some weight this winter, but did not feel this was the time to lose weight. I keep reading about how you can lose weight during radiation treatments, so I felt it was best not to try to lose weight. I read that you want to be careful with different supplements, herbals and vitamins because what boosts the normal cells can also boost the cancer. We sure don't want to help the cancer grow. You are lucky if you have someone you can share your tears and fears with, as it it good to express both of these rather than keeping them inside.
    Hope you are feeling a little better.
    Love and prayers to you, too.

    thanks Ro
    Thanks for your encouragement Ro. You are right, none of us really knows what each day will bring. We need to stay in the "now" and not get too far ahead or behind that. My husband encouraged me to be proactive so if I don't hear anything about the PET scan by Wed, I will call and find out what's up!!

    Have a wonderful day everyone, Mary Ann (Daisy)
  • deanna14
    deanna14 Member Posts: 732
    daisy366 said:

    chemo only and more...
    Hi fellow UPSC friends,

    First a comment to Belinda - After surgery in Sept I was staged at 3a with plan for chemo and radiation, but a PET scan before treatment showed distant metastasis in lymph nodes and the plan switched to chemo only first. My guess is they want to pursue a systemic approach first and then zero in on problem areas. (I really need to ask direct questions, though).

    I finished 6th round on Feb 19 and am waiting for next PET scan - it was scheduled for last week but insurance denied. I hope something happens this week. Hang in there, Belinda. I fared pretty well during chemo you will too.


    To the rest of you, I want to thank you all for the warm welcome. I feel like I know you now that I’ve read so many of your posts. I am glad you had each other at this time. I wish I found you guys sooner. If you don't mind I'm going to ramble on a bit. I was diagnosed in mid Sept – not too far away from some of you. I live in southwest Florida. I can relate to your journey. I have done this alone – my fault – I didn’t reach out to local CA groups b/c I didn’t want to dwell on being sick – maybe I was in denial or I minimized the value of support. My treatments initially went very well so I didn’t need to be a “patient” or reach out. Only when things started going bad (my doc leaving the area, blood work bad, chemo delayed, tears flowing, being scared) did I feel the need to connect. It seems lonely when no one REALLY understands; I was embarrassed that I cried so much in the past few weeks, though others gave me permission and didn’t seem to mind.

    I’ve been getting to know you – Deanna’s wedding, stories of family, the joy of your grandchildren, the trials of treatment - changes in your bodies and moods – dealing with crises with your health and family. It’s evident that you are all caring and thoughtful women – there for each other through thick and thin.

    I don’t really know what my prognosis is – trying to be positive and not dwell on negative thoughts. I think I am stage 4 because of metastasis as far as lymph nodes in the neck – No other organs showed any CA in fist PET scan.

    I feel really uneducated when I read your conversations. I could not find much info about UPSC and have trusted my gyn/onc re: treatment. My doctor is moving out of FL soon which has been a real bummer for me. I’ll be transferred to another doc in the practice who I’m sure is excellent but (why are they all men!!!) we’ll be new to each other. Thank God for my onc. nurse – who put up with my phone calls, fears, and tears during the bad times. I sort of felt guilty for calling her so often until I read that many of you do the same.

    I gained weight like some of you. I’d like to drop at least 10-15 pounds. I’m still very weak and have no stamina but I need to push myself to exercise. I am irritated by increased neuropathy in middle toes and hands/finger tips. My skin feels waxy.
    I’m interested to know more about the supplements and any diet suggestions you have. About mid March (a month after last chemo) I was planning to get into a high antioxidant diet. I need to stop the sugary food which is not good for me in any case.

    I’d be interested in your feedback about any of this.

    Love and prayers to all of you. Mary Ann (aka Daisy)

    Welcome aboard Mary Ann
    First of all... sorry to have to meet you this way, but I am glad you have found us and do wish you would have found us sooner.
    I have wonderful family and friend support, but this group has added so much to my recovery. There is so much comfort in being able to get on here and collaborate feelings, ideas, etc. with people who REALLY know what all of this feels like.
    It was weird when I read your above post and you talked about my wedding and things going on with the others. It made me proud... I have never met any of these ladies face to face, but they are a huge important part of my life! They have helped me sooooo much through the scariest part of my life. I so appreciate them and again, feel very proud to have people read our conversations and get something out of it. Thanks for sharing.
    I have already learned a lot from you also. Like the neuropathy in the middle toes, hands and fingertips. I have been experiencing this also, along with the bottom of the ball of both feet. It just helps me to worry less knowing that you are feeling the same symptom. I know none of this is normal... but it makes me feeling like I'm normal (does that make sense?)
    Maybe after our treatment is over, we can support each other on here in getting those 10-15+ pounds off.
    Anyway, I agree... these ladies are very special!
  • acallen98
    acallen98 Member Posts: 4
    deanna14 said:

    Welcome aboard Mary Ann
    First of all... sorry to have to meet you this way, but I am glad you have found us and do wish you would have found us sooner.
    I have wonderful family and friend support, but this group has added so much to my recovery. There is so much comfort in being able to get on here and collaborate feelings, ideas, etc. with people who REALLY know what all of this feels like.
    It was weird when I read your above post and you talked about my wedding and things going on with the others. It made me proud... I have never met any of these ladies face to face, but they are a huge important part of my life! They have helped me sooooo much through the scariest part of my life. I so appreciate them and again, feel very proud to have people read our conversations and get something out of it. Thanks for sharing.
    I have already learned a lot from you also. Like the neuropathy in the middle toes, hands and fingertips. I have been experiencing this also, along with the bottom of the ball of both feet. It just helps me to worry less knowing that you are feeling the same symptom. I know none of this is normal... but it makes me feeling like I'm normal (does that make sense?)
    Maybe after our treatment is over, we can support each other on here in getting those 10-15+ pounds off.
    Anyway, I agree... these ladies are very special!

    Message from a Daughter of UPSC
    Wow. My name is Amy. I have spent hours reading your discussions, crying and trying to take in as much information as I can. My mother, who is 59, had some spotting a couple weeks ago. After a pelvic biopsy, she got the dreaded call that she had Uterine Papillary Serous Cancer. Within one week, last Monday, she had a full hysterectomy. They said she doesn't fit the "mold". She is younger, white, thin, good health.... The good news was that there was no cancer in her lymph nodes or organs. However, she was diagnosed as a stage 3A, due to cancer found in her free floating cells. I had researched online prior the Yale study and asked the doctor if they were going to do this Platinum based chemo. I was happy to hear that they had also done the same study within a few months of Yale and came to the same conclusions, but he said she would need chemo only. I am a bit concerned at this and will have to inquire more. Sounds like she will be on a silimar routine as some mentioned where she will take the carboplatinum and paxil combo(I forget exactly what they are called) one day every three weeks for six treatments.

    I have many questions. I don't yet quite understand the staging and what A means versus C, for example. I am concerned about not doing the radiation. And more importantly, I am concerned about my mom! We live in Greenville, SC. Not too far from our Charlotte friend. God bless you for having this discussion board. I have told her about it and I hope when this can all settle in a little more, she too can read all you have to share and include her own experiences. She goes to the doctor next week to set up her chemo appts after her body has healed from surgery.

    I am not quite sure if I am supposed to just respond from the last thread....hope it gets to you all. I will add all of you lovely ladies to my prayers up with my mom.
    Amy
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Hi, Amy! About the radiation....
    I was diagnosed as Stage III-c UPSC following my surgery in early October 2008. My surgeon referred me first to a radiation oncologist, assuming I would get radiation before chemotherapy. But the Radiation Oncologist said I would be better off getting my chemo in first, because radiation can compromise your bone marrow to the point where it may be hard to get all of your chemo in before toxifying. So, to date, I have had 5 of my 6 rounds of paciltaxol/carboplatin, with my final round hopefully on Monday. But the surprise last week was that the chemo oncologist said he spoke with the radiation oncologist, and they may not recommend external pelvic radiation for me. (instead, just the 3 internal brachy radiation treatments). I was SHOCKED, as I just assumed I would also be getting the 25 external radiation rounds over 5 weeks. I don't meet with the radiation oncologist for 2 more weeks, and got this pronouncement second-hand from my chemo-onc, so I'm not too concerned yet. But I will be sure and post the pros and cons of having external radiation that we discuss so that you can be ready to fight for the radiation if you think it's needed. I am trying to be open-minded, although my gut reaction is that I will fight to get ALL of the treatment I consider 'best practices' for this aggressive cancer, as much as I LOVE the idea that I may not need it. I have a CT-scan before my meeting with the radiation oncologist and I am sure that will play into any decision. My chemo oncologist already refers to me as 'in remission' because my CT-scans are clear and my CA-125 had dropped down to within normal range now for my last 3 chemo rounds. But I want to do whatever is necessary to prevent a recurrance and it scares me that they may be 'saving' radiation for when the cancer returns, as an area of the body usually cannot be irradiated twice. I need to find out their reasoning and I will share it with all of you when I do. I welcome the input of all of you who have had radiation already.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    acallen98 said:

    Message from a Daughter of UPSC
    Wow. My name is Amy. I have spent hours reading your discussions, crying and trying to take in as much information as I can. My mother, who is 59, had some spotting a couple weeks ago. After a pelvic biopsy, she got the dreaded call that she had Uterine Papillary Serous Cancer. Within one week, last Monday, she had a full hysterectomy. They said she doesn't fit the "mold". She is younger, white, thin, good health.... The good news was that there was no cancer in her lymph nodes or organs. However, she was diagnosed as a stage 3A, due to cancer found in her free floating cells. I had researched online prior the Yale study and asked the doctor if they were going to do this Platinum based chemo. I was happy to hear that they had also done the same study within a few months of Yale and came to the same conclusions, but he said she would need chemo only. I am a bit concerned at this and will have to inquire more. Sounds like she will be on a silimar routine as some mentioned where she will take the carboplatinum and paxil combo(I forget exactly what they are called) one day every three weeks for six treatments.

    I have many questions. I don't yet quite understand the staging and what A means versus C, for example. I am concerned about not doing the radiation. And more importantly, I am concerned about my mom! We live in Greenville, SC. Not too far from our Charlotte friend. God bless you for having this discussion board. I have told her about it and I hope when this can all settle in a little more, she too can read all you have to share and include her own experiences. She goes to the doctor next week to set up her chemo appts after her body has healed from surgery.

    I am not quite sure if I am supposed to just respond from the last thread....hope it gets to you all. I will add all of you lovely ladies to my prayers up with my mom.
    Amy

    Welcome Amy
    Hi Amy,

    I am like your mother - don't fit the mold!! I wonder if there is a mold - according to my Dr. it's "bad luck" to get this CA.

    I will have appointment soon after my CT scan this week and I will find out about my treatments. I was initially stage 3a with plan for "chemo and radiation" but this changed to 6 rounds of Taxal/Carbo.

    I don't want to burst any bubbles but my understanding is that this cancer is incurable and that we should expect recurrences. I've been told that we can live a long life and that we will have to "manage" this disease. Remission sounds very good to me!!

    I'll check my my new Dr. about the radiation thing. I think it may be a good thing to keep this as a "future option" rather than to use up this card too early.

    Mary Ann (aka Daisy)
  • deanna14
    deanna14 Member Posts: 732
    daisy366 said:

    Welcome Amy
    Hi Amy,

    I am like your mother - don't fit the mold!! I wonder if there is a mold - according to my Dr. it's "bad luck" to get this CA.

    I will have appointment soon after my CT scan this week and I will find out about my treatments. I was initially stage 3a with plan for "chemo and radiation" but this changed to 6 rounds of Taxal/Carbo.

    I don't want to burst any bubbles but my understanding is that this cancer is incurable and that we should expect recurrences. I've been told that we can live a long life and that we will have to "manage" this disease. Remission sounds very good to me!!

    I'll check my my new Dr. about the radiation thing. I think it may be a good thing to keep this as a "future option" rather than to use up this card too early.

    Mary Ann (aka Daisy)

    "Fitting the mold"
    I am not sure that there is a mold for UPSC. It seems that none of us fit what the literature says is the mold.
    I also have never gotten the impression from my doctor that this cancer is "incurable." It is highly recurrent and agressive. However, my understanding is that with the recommended carbo/taxol treatments every 21 days x 6 cycles, 25 external radiation treatments over 5 weeks and 3 internal high dose radiation treatments that the cure rate is 60% or higher. I think that when they give you the impression that you should expect reoccurance, it is so you will prepare for the worst and hope for the best.
    I also was of the understanding that they hit UPSC with everything they have when you are first diagnosed because if you have a reoccurance, that is when the survival rate takes a real nose dive.
    My radiation oncologist told me that the most common site of reoccurance is the top of the vagina. He explained that this is why the high dose internal radiation treatments are so important.
    Anywho, regardless of the percentages, or the data or the lack of data, I'm praying for a cure from this cancer.
  • Kris Ann
    Kris Ann Member Posts: 26
    acallen98 said:

    Message from a Daughter of UPSC
    Wow. My name is Amy. I have spent hours reading your discussions, crying and trying to take in as much information as I can. My mother, who is 59, had some spotting a couple weeks ago. After a pelvic biopsy, she got the dreaded call that she had Uterine Papillary Serous Cancer. Within one week, last Monday, she had a full hysterectomy. They said she doesn't fit the "mold". She is younger, white, thin, good health.... The good news was that there was no cancer in her lymph nodes or organs. However, she was diagnosed as a stage 3A, due to cancer found in her free floating cells. I had researched online prior the Yale study and asked the doctor if they were going to do this Platinum based chemo. I was happy to hear that they had also done the same study within a few months of Yale and came to the same conclusions, but he said she would need chemo only. I am a bit concerned at this and will have to inquire more. Sounds like she will be on a silimar routine as some mentioned where she will take the carboplatinum and paxil combo(I forget exactly what they are called) one day every three weeks for six treatments.

    I have many questions. I don't yet quite understand the staging and what A means versus C, for example. I am concerned about not doing the radiation. And more importantly, I am concerned about my mom! We live in Greenville, SC. Not too far from our Charlotte friend. God bless you for having this discussion board. I have told her about it and I hope when this can all settle in a little more, she too can read all you have to share and include her own experiences. She goes to the doctor next week to set up her chemo appts after her body has healed from surgery.

    I am not quite sure if I am supposed to just respond from the last thread....hope it gets to you all. I will add all of you lovely ladies to my prayers up with my mom.
    Amy

    Hi Amy,
    My mom was also

    Hi Amy,

    My mom was also diagnosed with stage 4 upsc cancer actually 1 year ago March 10th. She was 61 at time of diagnosis. She is young, youthful, thin, active, both of her parents are almost 90 and very healthy. The whole thing was a shocker and still is really. She ended up doing 4 rounds of chemo (platinum). Then she has 35 whole abdominal radiation treatments... then had 4 brachy therapy treatments. Oct. 3rd of 08 was her very last brachy treatment. She has since recovered quite nicely. She lost a lot of weight though and is having trouble gaining any weight back. Her stomach is loud. Meaning it makes loud grumbling noises after she eats. But she eats everything so that is good. Her color looks great.. her hair came back with a lot of body to it and she has her energy back... so I guess there is some light at the end of the tunnel. Of course she still has to be monitored very closely. But I'm praying all that treatment did its job. So my prayers are with you... and of course your mom. Keep your chin up!

    Kris
  • acallen98
    acallen98 Member Posts: 4

    Hi, Amy! About the radiation....
    I was diagnosed as Stage III-c UPSC following my surgery in early October 2008. My surgeon referred me first to a radiation oncologist, assuming I would get radiation before chemotherapy. But the Radiation Oncologist said I would be better off getting my chemo in first, because radiation can compromise your bone marrow to the point where it may be hard to get all of your chemo in before toxifying. So, to date, I have had 5 of my 6 rounds of paciltaxol/carboplatin, with my final round hopefully on Monday. But the surprise last week was that the chemo oncologist said he spoke with the radiation oncologist, and they may not recommend external pelvic radiation for me. (instead, just the 3 internal brachy radiation treatments). I was SHOCKED, as I just assumed I would also be getting the 25 external radiation rounds over 5 weeks. I don't meet with the radiation oncologist for 2 more weeks, and got this pronouncement second-hand from my chemo-onc, so I'm not too concerned yet. But I will be sure and post the pros and cons of having external radiation that we discuss so that you can be ready to fight for the radiation if you think it's needed. I am trying to be open-minded, although my gut reaction is that I will fight to get ALL of the treatment I consider 'best practices' for this aggressive cancer, as much as I LOVE the idea that I may not need it. I have a CT-scan before my meeting with the radiation oncologist and I am sure that will play into any decision. My chemo oncologist already refers to me as 'in remission' because my CT-scans are clear and my CA-125 had dropped down to within normal range now for my last 3 chemo rounds. But I want to do whatever is necessary to prevent a recurrance and it scares me that they may be 'saving' radiation for when the cancer returns, as an area of the body usually cannot be irradiated twice. I need to find out their reasoning and I will share it with all of you when I do. I welcome the input of all of you who have had radiation already.

    Thanks
    Thank ladies for your comments. It is just nice to feel like there is some hope. You look on the internet and statistics can scare you. But they say that the internet is not always reliable and current. There seems to be new treatments out there for cancer all the time. Besides all this research, I have been reading Lance Armstrong's book as well. There are so many people who start off with such a dreadful diagnosis and beat the odds! Makes you just want to fight so hard and beat it!! He advises not to ask the doctor what your chances are because he says, "There is no proper way to estimate somebody's chances, and we shouldn't try, because we can never be entirely right, and it deprives people of hope. Hope that is the only antidote to fear."

    My mom and I went wig shopping today. We were thrilled that they actually looked real and she looked great with them on. She should get hers next week, so she will be ready before her chemo starts.

    I have been going through your discussions from the past year and writing things down...baby oil for her bald head, tips for constipation etc. You have encouraged her already and she had not quite yet been on your site. We never seem to understand why God allows us to go through such tough times. I still don't understand it, but I see you as angels sent to help my mom when we feel so scared. I pray he heals you all...So again, thanks and thanks. I will check here often...
  • deanna14
    deanna14 Member Posts: 732
    acallen98 said:

    Thanks
    Thank ladies for your comments. It is just nice to feel like there is some hope. You look on the internet and statistics can scare you. But they say that the internet is not always reliable and current. There seems to be new treatments out there for cancer all the time. Besides all this research, I have been reading Lance Armstrong's book as well. There are so many people who start off with such a dreadful diagnosis and beat the odds! Makes you just want to fight so hard and beat it!! He advises not to ask the doctor what your chances are because he says, "There is no proper way to estimate somebody's chances, and we shouldn't try, because we can never be entirely right, and it deprives people of hope. Hope that is the only antidote to fear."

    My mom and I went wig shopping today. We were thrilled that they actually looked real and she looked great with them on. She should get hers next week, so she will be ready before her chemo starts.

    I have been going through your discussions from the past year and writing things down...baby oil for her bald head, tips for constipation etc. You have encouraged her already and she had not quite yet been on your site. We never seem to understand why God allows us to go through such tough times. I still don't understand it, but I see you as angels sent to help my mom when we feel so scared. I pray he heals you all...So again, thanks and thanks. I will check here often...

    You made my day!
    I keep praying for something that will make this all worthwhile. Knowing that I have helped someone else feel better while going through this means a lot to me. So thank you. You and your mom have a special relationship, may God bless you both and I know he is walking with all of us through this difficult and scary journey. I wish I still had an email that I received a few weeks ago, I would forward it to you. The title was something like "did you feel that", when you scrolled down there was a picture of the Lord embracing a woman. It really made me imagine feeling His arms around me. I don't have a picture to send with the thougt, but I pray that you and your mom can feel the Lord embracing you! I have to remind myself daily to turn my worry and fear over to Him. He will give you peace...
  • Ro10
    Ro10 Member Posts: 1,561 Member
    acallen98 said:

    Message from a Daughter of UPSC
    Wow. My name is Amy. I have spent hours reading your discussions, crying and trying to take in as much information as I can. My mother, who is 59, had some spotting a couple weeks ago. After a pelvic biopsy, she got the dreaded call that she had Uterine Papillary Serous Cancer. Within one week, last Monday, she had a full hysterectomy. They said she doesn't fit the "mold". She is younger, white, thin, good health.... The good news was that there was no cancer in her lymph nodes or organs. However, she was diagnosed as a stage 3A, due to cancer found in her free floating cells. I had researched online prior the Yale study and asked the doctor if they were going to do this Platinum based chemo. I was happy to hear that they had also done the same study within a few months of Yale and came to the same conclusions, but he said she would need chemo only. I am a bit concerned at this and will have to inquire more. Sounds like she will be on a silimar routine as some mentioned where she will take the carboplatinum and paxil combo(I forget exactly what they are called) one day every three weeks for six treatments.

    I have many questions. I don't yet quite understand the staging and what A means versus C, for example. I am concerned about not doing the radiation. And more importantly, I am concerned about my mom! We live in Greenville, SC. Not too far from our Charlotte friend. God bless you for having this discussion board. I have told her about it and I hope when this can all settle in a little more, she too can read all you have to share and include her own experiences. She goes to the doctor next week to set up her chemo appts after her body has healed from surgery.

    I am not quite sure if I am supposed to just respond from the last thread....hope it gets to you all. I will add all of you lovely ladies to my prayers up with my mom.
    Amy

    Welcome Amy and her Mom
    I too did not "fit the mold". My cancer was found on a routine pap test. Which they say is very rare. I wonder if I had had the pap done a week sooner or later, would it have been found. I am 60 years old. I have been healthy, exercised, and followed a low fat diet. I thought I was healthy. All the doctors felt the cancer was caught early, and all I would need was a hysterectomy. Unfortunately I was diagnosed with Stage 3-C cancer. You asked the difference between 3-A and 3-C. 3-C is when the cancer has gone to the lymph nodes. 5 of my 21 lymph nodes were positive. I too had positive cells in my abdominal washing. I am having what they call sandwich treatment of 3 chemo treatments, then radiation treatments will start April 7th and then three more chemo treatments, each chemo will be three weeks apart. I hope your Mom can read some of the discussion board and participate in the discussion board. I have found it very helpful and comforting to read about others experiences. You are right that what you read on the internet is very scary. On this board you hear about what is going on with those who have completed treatment or are in various stages of treatment. It is so nice to hear about how life goes on after treatments. HUGS to both of you.
  • br
    br Member Posts: 3
    I am new to this site
    Hi,
    I am home healing from a hysterectomy and the news that I have Stage IV UPSC. Cancer was found in my uterus, ovaries, omentum, perametrium and diaphram. It has not reached my lymph nodes yet. This is all very new to me, so I just wanted to log on and hopefully hear some encouraging stories and meet others who are fighting this along with me.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Welcome 'br'! (Anything else we can call you by?)
    The best place to start to learn about UPSC is to read the really LONG thread you'll find here on this Discussion Board with something like 300+ posts. It loads VERY slowly and is VERY long, but if you work your way through it over a few days, you'll know a LOT more about what you are dealing with. I am so sorry that you also have to go through this journey, but am very glad that you have found us. Feel free to ask us anything.
  • deanna14
    deanna14 Member Posts: 732

    Welcome 'br'! (Anything else we can call you by?)
    The best place to start to learn about UPSC is to read the really LONG thread you'll find here on this Discussion Board with something like 300+ posts. It loads VERY slowly and is VERY long, but if you work your way through it over a few days, you'll know a LOT more about what you are dealing with. I am so sorry that you also have to go through this journey, but am very glad that you have found us. Feel free to ask us anything.

    Welcome br
    I am so sorry to hear that you are joining the fight against UPSC, but glad that you found us here. I am proud to say that this is a very caring and supportive group. Feel free to ask anything, we are all very willing to share what we know. For now, try to rest and heal from your surgery. Keep us posted on your progress. We will be here for you.
    Take care and God Bless you,
    Deanna
  • br
    br Member Posts: 3

    Welcome 'br'! (Anything else we can call you by?)
    The best place to start to learn about UPSC is to read the really LONG thread you'll find here on this Discussion Board with something like 300+ posts. It loads VERY slowly and is VERY long, but if you work your way through it over a few days, you'll know a LOT more about what you are dealing with. I am so sorry that you also have to go through this journey, but am very glad that you have found us. Feel free to ask us anything.

    Thanks and call me Betty
    I love this site and am so happy to be able to read the story of other sisters. My son helped me apply and I wasn't sure how to name myself (privacy issues of course). I am just a week out of surgery (complete hysterectomy) and I am not too focused as yet. I feel like I need to get started with my treatment, "yesterday"! I want to stop this thing! What I am most anxious to know is how long you have been fighting this and how successful treatment has been for most of you. I want to be a survivor not a statistic and my journey is just beginning, so I need courage and the hope that goes with healing. I believe God loves me and will work to heal me, but I also believe that His love comes through others and I reach out in hope and love to you. Thank you for responding.
    BR/Betty
  • br
    br Member Posts: 3

    Welcome 'br'! (Anything else we can call you by?)
    The best place to start to learn about UPSC is to read the really LONG thread you'll find here on this Discussion Board with something like 300+ posts. It loads VERY slowly and is VERY long, but if you work your way through it over a few days, you'll know a LOT more about what you are dealing with. I am so sorry that you also have to go through this journey, but am very glad that you have found us. Feel free to ask us anything.

    Thanks and call me Betty
  • deanna14
    deanna14 Member Posts: 732
    br said:

    Thanks and call me Betty
    I love this site and am so happy to be able to read the story of other sisters. My son helped me apply and I wasn't sure how to name myself (privacy issues of course). I am just a week out of surgery (complete hysterectomy) and I am not too focused as yet. I feel like I need to get started with my treatment, "yesterday"! I want to stop this thing! What I am most anxious to know is how long you have been fighting this and how successful treatment has been for most of you. I want to be a survivor not a statistic and my journey is just beginning, so I need courage and the hope that goes with healing. I believe God loves me and will work to heal me, but I also believe that His love comes through others and I reach out in hope and love to you. Thank you for responding.
    BR/Betty

    Welcome Betty
    I am with you on that! I want to be a survivor and not a statistic also. We are all in various stages of treatment and recovery. I will tell you my story and let the others share theirs.
    I am 39 years old and I was originally diagnosed with "endometrial cancer" in July of last year after a D&C and hysteroscope. I had a total hysterectomy on September 11, 2008 and they found UPSC with mets to one pelvic lymph node. I started radiation treatments in October last year and completed 25 external pelvic and 3 high beam internal treatments in December. By the way, I also got married in November amongst all of this chaos! I started chemotherapy with carboplatin and taxol in January. I have completed 3 treatments and have 3 or 4 left to complete. I hoped to be finished by the first week of May, but have since had a couple of weeks of delays due to low blood counts. So now it will be the end of May at the earliest.

    That's my story in a nutshell. I try to keep a positive attitude. I try not to pay much attention to the "statistics." I pray a lot and just like you trust that the Lord has brought me to this and He will bring me through it! I also pray for all of the ladies on this discussion board that they too will stay strong and win this battle!

    I know you are in a hurry to get on with your treatment, but right now, you must concentrate on healing from your surgery first. Did you have open surgery? Some of the ladies here have had the DaVinci robotic surgery which allows for faster healing. I had to wait about 7 weeks after surgery before starting my treatment. So, concentrate on taking good care of yourself, so you will heal quickly and get started on treatment.

    Hugs,
    Deanna
  • Ro10
    Ro10 Member Posts: 1,561 Member
    br said:

    Thanks and call me Betty

    Betty sorry you are on the same journey
    Welcome to the site Betty. I am sorry you are having to go on the same journey we are going on. We all keep praying that our treatments will make us all survivors. We believe that God will help us through each day. Rest and allow the healing from your surgery to occur. I know how anxious you are to get the treatment started. I hope you have time to read the entries from others, as I found so much encouragement from what others have shared. It is much more encouraging than what you read on the internet. That is pretty scary stuff. Take each day one day at a time. Feel free to ask any questions, and someone will probably have an answer for you. HUGS to you.
  • claudiamd1
    claudiamd1 Member Posts: 3
    Ro10 said:

    Betty sorry you are on the same journey
    Welcome to the site Betty. I am sorry you are having to go on the same journey we are going on. We all keep praying that our treatments will make us all survivors. We believe that God will help us through each day. Rest and allow the healing from your surgery to occur. I know how anxious you are to get the treatment started. I hope you have time to read the entries from others, as I found so much encouragement from what others have shared. It is much more encouraging than what you read on the internet. That is pretty scary stuff. Take each day one day at a time. Feel free to ask any questions, and someone will probably have an answer for you. HUGS to you.

    new
    I am also new to this site and it was found by one of my dear friends who is on the Internet all the time especially after I got diagnosed with uteran/crevical cancer. I had my surgery on the 12 of February and it was done by da Vinci (I know call my body, body by DaVinci it makes people laugh and forget the serious side of it). I am 42 and no one in my family history had any cancer except for my Grandfather on my Mother's side who had colon cancer. I guess that is where the link is. I also had the HNCCP test done and now waiting on the results. My doc downgraded my cancer so I am doing Radiation only and I am on my second week. So far no side effects and the diet is killing me. There are foods I would love to keep on eating since I did loose 14 pounds after my surgery. It took about 5 weeks for me to recoover to where I was comfortable being left alone. I guess my age had something to do with it or not who knows. My surgery consisted of total hysterectomy with 19 lymphnodes removed. I am now getting my feeling back on my right thigh it still is a bit numb but I'd rather pay that price than have a lymph node be positive, which none where. I consider myself very lucky since it was caught at stage 1b grade 3. I have a great family who is very supportive and I know I will beat this thing from ever coming back somewhere else. I have kick **** attitude and it freaks people out, I guess they thought I should be all wallowing in my misery from my diagnosis and I am not. Far from it. But getting back to the point, I am happy that my friend has found this site and I finally have time to log on and see who else is out there.
    Claudia
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Hi, Claudia! WELCOME!
    Although I am sorry to know that you also are in the midst of this battle with us, I am so glad that you found us. ((((Claudia))))) I am so happy that your cancer was discovered at such an early stage! You have every reason to be optimistic! Feel free to work your way through the many posts here; there is much you can learn that will aid you in being an proactive member of your own cancer-fighting team.
  • claudiamd1
    claudiamd1 Member Posts: 3

    Hi, Claudia! WELCOME!
    Although I am sorry to know that you also are in the midst of this battle with us, I am so glad that you found us. ((((Claudia))))) I am so happy that your cancer was discovered at such an early stage! You have every reason to be optimistic! Feel free to work your way through the many posts here; there is much you can learn that will aid you in being an proactive member of your own cancer-fighting team.

    Thanks
    Thanks Linda. Yes, I have already found this discussion board very helpful in the fact that my doctor never revealed my C125 score. Not sure why he didn't but I thought it was interesting that so many here in this discussion board had talked about it. I did ask my Radiation Oncologist and she said I really didn't need to know since I'm only getting Radiation. Thanks for the hugs!!!!! Like many on this board I also was shocked when I found out and so was my community and my family, relatives both here in the USA and Germany. They were all devasted by my news. I never felt that way at all, I finally knew what was going on with my body, what a relief it was to find out and being able to battle the enemy. So again, thanks for the warm welcome and glad to have found all of you!
    C