Just got diagnosed yesterday with endometrial cancer

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Comments

  • wasil1216
    wasil1216 Member Posts: 15

    Hi it's me again. I will be
    Hi it's me again. I will be going to my gyno Tues. and I have compiled a list of questions. Could you all give me some of advise on what questions to ask! I want to be very thorough.

    Thanks
    Sandy

    Your Tuesday Appt.
    Hi Sandy. Ive been checking your last post all day hoping to get some info as well. I hope some of the Ladies will login soon to answer some of your questions. Also i see your appt is tommorrow (mine too) and so i wanted to wish you all the best. ....hugs.....
  • Kaleena
    Kaleena Member Posts: 2,088 Member

    Hi it's me again. I will be
    Hi it's me again. I will be going to my gyno Tues. and I have compiled a list of questions. Could you all give me some of advise on what questions to ask! I want to be very thorough.

    Thanks
    Sandy

    Sandy:
    Right now everything

    Sandy:

    Right now everything is going to seem crazy to you. Just hang in there. Also, you may be surprised if the surgery may be a month away. When you hear you have cancer, you want it out right away.

    Take questions you want to ask your gyn on Tuesday. Don't be afraid to ask questions no matter how small of a question it is. Your gyne should refer you to a gyn/onc. So you will have to set up another appointment and wait again. Hang in there! Also, if you are not sure what your gyn/onc is suggesting, ask that you can think about it and/or get a second opinion. It is ok and a lot of doctors would suggest that.

    Another thing, if you are to get chemo, the doctor may want to place a port. Don't panic about this. It is a simple procedure (out-patient), but it will save your veins and make getting treatment a lot easier. In fact, although I was done treating in 2006, I just had my port removed last week.

    Also, if you are having a hysterectomy, ask what else they are going to remove. I had a total hysterectomy (removed ovaries, etc). At my Itstaging surgery, they removed my omentum?? my appendix and various lymph nodes. So you may want to ask about these things too.

    It is good that you have a great hospital to go to. It should make all of this less stressful for you.

    My thoughts are with you.

    Kathy
  • kkstef
    kkstef Member Posts: 688 Member

    Hi it's me again. I will be
    Hi it's me again. I will be going to my gyno Tues. and I have compiled a list of questions. Could you all give me some of advise on what questions to ask! I want to be very thorough.

    Thanks
    Sandy

    Sandy and Wasail

    Here are a few suggesions that may be helpful.

    You want to have your surgery done by a GYN Oncologist so if you are seeing a regular GYN, ask for recommendations and then do some research on the ones suggested. Talk to others in your area who might know the docs.

    Write down your questions in advance and take the list with you.

    Take someone with you and have them write down the info the dr. says as it is impossible to remember everything they say. Then you can refer to it later if you are confused.

    At this point you want to know what the surgical plan would be...what all will be removed? How many lymph nodes do they typically remove? What is the rationale of removing the lymph nodes if they appear and feel o.k? What are the long range repercussions of removing lymph nodes (lymphedema).

    What can you expect in regards to your recovery?

    What type of procedure does the surgeon use? Regular abdominal incision or the DaVinci and what are the pro's and con's.

    How soon after surgery will you know the results...The TYPE of cancer, the Grade and the Stage. Many doctors do not inform their patient until the first post op check up which could be 4 weeks.....don't accept that for an answer. It is too hard to wait for the verdict that long. The report is actually available a few days after the surgery!

    How available is he and/or his nurse to answer your questions? How does he communicate? Email? Phone calls?

    Do not hesitate to get a second opinion....especially if you don't feel comfortable with the physician you see.

    Once you find out the type of cancer, grade and stage, there will be lots more questions about the type of treatment, schedule, etc. But just take it a step at a time.

    Let us know what type of cancer you have, grade and stage and I know the ladies on this site will have lots more suggestions on what to ask.

    You will do just fine but it is overwhelming when you first hear the news. If you cursor down through the posts on this site you will find other "newbies" who have sought info initially and you read our replies to those folks...it may be helpful.

    Best wishes to both of you! Will be thinking of you tomorrow!

    Karen
  • wasil1216
    wasil1216 Member Posts: 15
    kkstef said:

    Sandy and Wasail

    Here are a few suggesions that may be helpful.

    You want to have your surgery done by a GYN Oncologist so if you are seeing a regular GYN, ask for recommendations and then do some research on the ones suggested. Talk to others in your area who might know the docs.

    Write down your questions in advance and take the list with you.

    Take someone with you and have them write down the info the dr. says as it is impossible to remember everything they say. Then you can refer to it later if you are confused.

    At this point you want to know what the surgical plan would be...what all will be removed? How many lymph nodes do they typically remove? What is the rationale of removing the lymph nodes if they appear and feel o.k? What are the long range repercussions of removing lymph nodes (lymphedema).

    What can you expect in regards to your recovery?

    What type of procedure does the surgeon use? Regular abdominal incision or the DaVinci and what are the pro's and con's.

    How soon after surgery will you know the results...The TYPE of cancer, the Grade and the Stage. Many doctors do not inform their patient until the first post op check up which could be 4 weeks.....don't accept that for an answer. It is too hard to wait for the verdict that long. The report is actually available a few days after the surgery!

    How available is he and/or his nurse to answer your questions? How does he communicate? Email? Phone calls?

    Do not hesitate to get a second opinion....especially if you don't feel comfortable with the physician you see.

    Once you find out the type of cancer, grade and stage, there will be lots more questions about the type of treatment, schedule, etc. But just take it a step at a time.

    Let us know what type of cancer you have, grade and stage and I know the ladies on this site will have lots more suggestions on what to ask.

    You will do just fine but it is overwhelming when you first hear the news. If you cursor down through the posts on this site you will find other "newbies" who have sought info initially and you read our replies to those folks...it may be helpful.

    Best wishes to both of you! Will be thinking of you tomorrow!

    Karen

    Karen ((i could hug you)
    What an outstanding list. thank you so much for taking the time for writing all that down. i have my notepad on my lap so i will be copying it all down.Reading the advice and encouragement from everyone who has gone down this road before me shows how much courage and strength one has despite this awful fear.....there is HOPE.
  • kkstef
    kkstef Member Posts: 688 Member
    wasil1216 said:

    Karen ((i could hug you)
    What an outstanding list. thank you so much for taking the time for writing all that down. i have my notepad on my lap so i will be copying it all down.Reading the advice and encouragement from everyone who has gone down this road before me shows how much courage and strength one has despite this awful fear.....there is HOPE.

    Hugs are GREAT!
    Wasil....I recall when I was first diagnosed! I was simply overwhelmed and kept clicking on sites everywhere trying to find the magic answer (and found out there is a lot of bad info out there). I couldn't get it all organized in my mind....what to do first, second, etc.

    It is indeed overwhelming and this site was not very active at that time, unfortunately! You will find out what a strong person you are as you make this journey with the support of your family, friends and the women here. Indeed, there is a lot of HOPE!! I know you and Sandy can do it!

    Big hugs to you both!

    Karen
  • Ladymonk
    Ladymonk Member Posts: 13 Member
    Deep breaths, sweetie; you'll come through...
    I was diagnosed with Stage IV endometrial ca a long time ago, it had spread to abdomen, chest, neck, and axilla (left underarm). Back then, in the 1980s, the survival rates for Stage IV were less than 5%. I had three young kids, was going through a divorce-

    I had a lot of treatment, much of it pretty primitive in those days. Got a remission, had a flareup, more treatment, remission, flareup, treatment,, etc. This went on for nine years, until it just stayed in remission. It is much less intense now and there is a lot of "good stuff" out there to help with side effects.

    The point is this: I am still here, cancer free, many many years later. YOU WILL BE, TOO!!! I've seen my kids grow, marry, and begin families of thier own.

    Find the absolutley best place in your area to go for treatment, follow your treatment plan, and it does indeed help to take someone with you to take notes, because, trust me, you will not remember everything that is said, especially initially.

    Although I am new to this community, I know that we are a group of supportive, caring fellow travelers. Keep us posted, we are here to uphold you and cradle you in prayer and support...
  • Fayard
    Fayard Member Posts: 438 Member
    Ladymonk said:

    Deep breaths, sweetie; you'll come through...
    I was diagnosed with Stage IV endometrial ca a long time ago, it had spread to abdomen, chest, neck, and axilla (left underarm). Back then, in the 1980s, the survival rates for Stage IV were less than 5%. I had three young kids, was going through a divorce-

    I had a lot of treatment, much of it pretty primitive in those days. Got a remission, had a flareup, more treatment, remission, flareup, treatment,, etc. This went on for nine years, until it just stayed in remission. It is much less intense now and there is a lot of "good stuff" out there to help with side effects.

    The point is this: I am still here, cancer free, many many years later. YOU WILL BE, TOO!!! I've seen my kids grow, marry, and begin families of thier own.

    Find the absolutley best place in your area to go for treatment, follow your treatment plan, and it does indeed help to take someone with you to take notes, because, trust me, you will not remember everything that is said, especially initially.

    Although I am new to this community, I know that we are a group of supportive, caring fellow travelers. Keep us posted, we are here to uphold you and cradle you in prayer and support...

    Your prognosis is very
    Your prognosis is very hopeful for us.
    I had state 2, uterine clear cell adenocarcinoma, and just finished chemo.

    Thank you!
  • raf
    raf Member Posts: 2

    Hi it's me again. I will be
    Hi it's me again. I will be going to my gyno Tues. and I have compiled a list of questions. Could you all give me some of advise on what questions to ask! I want to be very thorough.

    Thanks
    Sandy

    I am glad you reached out
    I am glad you reached out via this board. I did not and the fear and isolation just added to the panic. Once I found some boards it gave me strength reading about other surviors. It has been 1.5 years since my diagnosis and no matter how unbelievable it seems for you at this moment, you WILL be fine. As I look back, the 2 most important things I can share is 1- collect information and ask every question you can imagine from as many sources as you can. Knowledge is strength. 2- Get as many 2nd opinions as you need. We were in a panic and saw the gyn Onc recommended by my gyn. He seemed so good that we thought why see another but now I think we just needed a port in the storm. Later, we saw another Gyn Onc and the difference was amazing. We immediately knew he was the better choice.

    Take Care!
  • HellieC
    HellieC Member Posts: 524 Member
    Ladymonk said:

    Deep breaths, sweetie; you'll come through...
    I was diagnosed with Stage IV endometrial ca a long time ago, it had spread to abdomen, chest, neck, and axilla (left underarm). Back then, in the 1980s, the survival rates for Stage IV were less than 5%. I had three young kids, was going through a divorce-

    I had a lot of treatment, much of it pretty primitive in those days. Got a remission, had a flareup, more treatment, remission, flareup, treatment,, etc. This went on for nine years, until it just stayed in remission. It is much less intense now and there is a lot of "good stuff" out there to help with side effects.

    The point is this: I am still here, cancer free, many many years later. YOU WILL BE, TOO!!! I've seen my kids grow, marry, and begin families of thier own.

    Find the absolutley best place in your area to go for treatment, follow your treatment plan, and it does indeed help to take someone with you to take notes, because, trust me, you will not remember everything that is said, especially initially.

    Although I am new to this community, I know that we are a group of supportive, caring fellow travelers. Keep us posted, we are here to uphold you and cradle you in prayer and support...

    Your story is awesome!
    Thank you so much for posting and I am so glad that you are well after all you have been through. We need to hear the stories of survivors!
    I am currently NED from my second recurrence (long story, but i wasn't even diagnosed with any cancer post hysterectomy in 2001!), so it is particularly heartening for me to hear that you had several flareups and came through it. I intend to follow your example.
    If you feel like it (and if you can recall it all) I am sure that the ladies on this site wuold be interested to hear what treatments you have had, so we can compare the "then" and "now"!
    Kindest wishes
    Helen
  • Bluebird Bush
    Bluebird Bush Member Posts: 28
    kkstef said:

    Hugs are GREAT!
    Wasil....I recall when I was first diagnosed! I was simply overwhelmed and kept clicking on sites everywhere trying to find the magic answer (and found out there is a lot of bad info out there). I couldn't get it all organized in my mind....what to do first, second, etc.

    It is indeed overwhelming and this site was not very active at that time, unfortunately! You will find out what a strong person you are as you make this journey with the support of your family, friends and the women here. Indeed, there is a lot of HOPE!! I know you and Sandy can do it!

    Big hugs to you both!

    Karen

    Your posts
    Karen, I have been reading your posts and appreciate your sharing. I wonder if your neuropathy got better after you stopped treatment and if there is anything to do to help it. I have only had two weekly treatments of carboplatin/paclitaxel and already I can feel the neuropathy coming on. Thank you for all your suggestions and encouragement. Geni
  • Bluebird Bush
    Bluebird Bush Member Posts: 28
    kkstef said:

    Hugs are GREAT!
    Wasil....I recall when I was first diagnosed! I was simply overwhelmed and kept clicking on sites everywhere trying to find the magic answer (and found out there is a lot of bad info out there). I couldn't get it all organized in my mind....what to do first, second, etc.

    It is indeed overwhelming and this site was not very active at that time, unfortunately! You will find out what a strong person you are as you make this journey with the support of your family, friends and the women here. Indeed, there is a lot of HOPE!! I know you and Sandy can do it!

    Big hugs to you both!

    Karen

    Your posts
    Karen, I have been reading your posts and appreciate your sharing. I wonder if your neuropathy got better after you stopped treatment and if there is anything to do to help it. I have only had two weekly treatments of carboplatin/paclitaxel and already I can feel the neuropathy coming on. Thank you for all your suggestions and encouragement. Geni
  • Fayard
    Fayard Member Posts: 438 Member

    Your posts
    Karen, I have been reading your posts and appreciate your sharing. I wonder if your neuropathy got better after you stopped treatment and if there is anything to do to help it. I have only had two weekly treatments of carboplatin/paclitaxel and already I can feel the neuropathy coming on. Thank you for all your suggestions and encouragement. Geni

    L-Glutamine
    Geni,

    Do not forget to ask your doctor if you can take L-Glutamine.
    It helped me. I also did acupuncture, one treatment per week.
    I was on taxol/carboplatin.

    Good luck!
  • daisy366
    daisy366 Member Posts: 1,458 Member
    HellieC said:

    Your story is awesome!
    Thank you so much for posting and I am so glad that you are well after all you have been through. We need to hear the stories of survivors!
    I am currently NED from my second recurrence (long story, but i wasn't even diagnosed with any cancer post hysterectomy in 2001!), so it is particularly heartening for me to hear that you had several flareups and came through it. I intend to follow your example.
    If you feel like it (and if you can recall it all) I am sure that the ladies on this site wuold be interested to hear what treatments you have had, so we can compare the "then" and "now"!
    Kindest wishes
    Helen

    Ladymonk
    Thanks so much for your post. What encouragement for me!!!!! I'm so glad you are doing well and still here with your testimony.

    Many blessings, Mary Ann
  • kkstef
    kkstef Member Posts: 688 Member

    Your posts
    Karen, I have been reading your posts and appreciate your sharing. I wonder if your neuropathy got better after you stopped treatment and if there is anything to do to help it. I have only had two weekly treatments of carboplatin/paclitaxel and already I can feel the neuropathy coming on. Thank you for all your suggestions and encouragement. Geni

    Geni,

    My neuropathy became evident after my 2nd or 3rd treatment(my treatments were every 3 weeks). I started taking L-Glutamine but don't think I was taking it as often as I should have. I never had it very bad in my fingers...just my feet. By the 5th treatment my feet were really hurting and my balance was getting worse, plus I had also been having huge issues trying to keep my counts up. My 6th treatment was put on hold for several weeks and no improvement in the neuropathy or the counts, particularly platelets and WBC. SO, my dr.suggested that we not go ahead with the 6th treatment in view of my difficulties. He told me that the neuropathy could get worse up 6-9 months after treatment and at one year it would probably not improve anymore.

    Mine did get worse and so I started taking Neurontin (gabapentin) but that didn't seem to help. I got some alph-lipoic acid, 600 mg. daily and started that. I do think that helped some for awhile but when it got to the point where I could not see any more improvement I quit taking it. I still have the neuropathy in my feet and it has stayed the same for about 2 years. My balance is certainly compromised.

    Be sure to tell your Dr. and Nurse about the neuropathy as they need to know about this. They may recommend L-Glutamine, certain B vitamins, etc.

    Let us know what they recommend?

    Best to you! Karen
  • california_artist
    california_artist Member Posts: 816 Member
    Karen
    I am very sorry to hear that you are still having trouble with balance due to pain in your feet. I think of you as being just one big ball of happiness, makes me make a sad face to hear things are not just wonderful in your life.

    Love and hugs, your friend,

    Claudia
  • Fayard
    Fayard Member Posts: 438 Member
    kkstef said:

    Sandy and Wasail

    Here are a few suggesions that may be helpful.

    You want to have your surgery done by a GYN Oncologist so if you are seeing a regular GYN, ask for recommendations and then do some research on the ones suggested. Talk to others in your area who might know the docs.

    Write down your questions in advance and take the list with you.

    Take someone with you and have them write down the info the dr. says as it is impossible to remember everything they say. Then you can refer to it later if you are confused.

    At this point you want to know what the surgical plan would be...what all will be removed? How many lymph nodes do they typically remove? What is the rationale of removing the lymph nodes if they appear and feel o.k? What are the long range repercussions of removing lymph nodes (lymphedema).

    What can you expect in regards to your recovery?

    What type of procedure does the surgeon use? Regular abdominal incision or the DaVinci and what are the pro's and con's.

    How soon after surgery will you know the results...The TYPE of cancer, the Grade and the Stage. Many doctors do not inform their patient until the first post op check up which could be 4 weeks.....don't accept that for an answer. It is too hard to wait for the verdict that long. The report is actually available a few days after the surgery!

    How available is he and/or his nurse to answer your questions? How does he communicate? Email? Phone calls?

    Do not hesitate to get a second opinion....especially if you don't feel comfortable with the physician you see.

    Once you find out the type of cancer, grade and stage, there will be lots more questions about the type of treatment, schedule, etc. But just take it a step at a time.

    Let us know what type of cancer you have, grade and stage and I know the ladies on this site will have lots more suggestions on what to ask.

    You will do just fine but it is overwhelming when you first hear the news. If you cursor down through the posts on this site you will find other "newbies" who have sought info initially and you read our replies to those folks...it may be helpful.

    Best wishes to both of you! Will be thinking of you tomorrow!

    Karen

    Vitamin B12 deficiency
    I had blood work last week, and I just got a call from my PCP, and he told me that I am anemic. No surprise!
    He told me to take Vitamin B12, because he knows I am not eating animal products, and folic acid.

    I went and Google both, and some of the deficiency symptoms are tingling and numbness in your toes and fingers, lightheaded, poor balance, etc.

    So I was thinking that beside the obvious neuropathy we developed through chemo, the symptoms for these vitamins deficiency and NP are alike.

    I am going to call my doctor to discuss my blood results in detail.
    I thinking that maybe once I am not anemic anymore my neuropathy will get better.
  • kkstef
    kkstef Member Posts: 688 Member

    Karen
    I am very sorry to hear that you are still having trouble with balance due to pain in your feet. I think of you as being just one big ball of happiness, makes me make a sad face to hear things are not just wonderful in your life.

    Love and hugs, your friend,

    Claudia

    Claudia
    Hey, I am pretty much "a ball of happiness" (that image makes me smile!)....except I just have to watch my step as I can lose my balance easily. And my toes hurt more some days and some days, not so bad. The worse thing is when they get cold...

    But, when I hear what so many on this site are dealing with, I feel incredibly fortunate.

    Am planning a trip to the Grand Canyon in the Fall....will be careful not to get too close to the edge :-). My husband said he plans on holding on to me very tightly!

    Hugs back at ya!
    Karen