Some Support for Uterine Cancer

nikkster
nikkster Member Posts: 10
edited March 2014 in Uterine/Endometrial Cancer #1
Surgery

I guess no one really prepares you for the Big C diagnosis.
I was a patient at a clinic for another problem when the doctors discovered the tumor.
At the time, I was seven hours away from home and decided that the best course of action would be to return to my home town and receive the surgery. Then,upon returning home, I waited two weeks for an appointment. A biopsy was performed during that subsequent office visit {with out any preparation} Then I waited for a week for the uterine cancer diagnosis.The ob gyn told it was grade 2 endometrium cancer and surgery was scheduled. I received several calls from the doctor explaining the need for two surgeons. Due to vacations,my surgery would be postponed for about a month.
In panic mode, I reached out to my circle of friends and contacted other doctors and facilities. One friend suggested that I return to the Cleveland Clinic since I was a patient there already. I called closer hospitals, but I would still have the wait.
I did go to Cleveland and had robotic surgery, I was in the hospital a day and a half due to anesthesia concerns. The doctor saw me on A Friday, and I had my surgery on Monday.
My family and I stayed in a hotel until I could travel the seven hours.
The surgeon did not remove the lymph nodes because the nodes looked fine during a previous Ct scan and by examination during surgery.
However, after the pathology report came back, There was Lymphovascular invasion.
I was absolutely crushed.
From what I read, my risk factors are age at 63, LVI, grade 2 tumor and stage was !B.
Cleveland recommended the most aggressive treatment based on a study. Full pelvic, chemo, and possibly hormonal.
The University of Penn recommended braci and chemo.
My local doctor suggestested pelvic and braci radiation. No chemo
I did due diligence as far as a layman can.

I decided to go with Penn, but I am going to use the more aggressive treatment of Cleveland.
I have been so sick and in pain. Meds do help.
I had my first chemo treatment- wow you gals are my heroines!
I chose Penn because it is a cancer center, and it is two hours away.
I stay with my son outside of Philadelphia and will come home between treatments if I feel well. My family has just seemed to place their lives on hold. I feel anxious and guilty.

I am extremely frightened and just hope that I am making the right choice.
My family is wonderful, but I feel that I have left them in a sense.

Thank you for your kindness.

Comments

  • norma2
    norma2 Member Posts: 479
    #2
    You are not alone
    Hi and glad you decided to come join this circle of sisters for support. I can understand the fear. I was diagnosed in the summer of 2009 and was so afraid that my teeth chattered when I heard the cancer word. Since I have been through the chemo, radiation, surgery, etc. I am still here and am much healthier than that day I got the diagnosis. My last visit to M D Anderson showed no sign of disease. My staging was IIIC with one right pelvic lymph node involved. Figo Grade 2.

    Thing that keeps me going is that I am fine today. I feel good. I even felt fine through the chemo and radiation. Taking one minute, one day at a time and thanking God for those moments is what makes me deal with it.

    {{big hug to you}} You hang in there. Join in the discussions if you like. I just love the gals here. They are an incredible bunch of people in many stages of the fight.
  • nikkster
    nikkster Member Posts: 10
    #3
    norma2 said:

    You are not alone
    Hi and glad you decided to come join this circle of sisters for support. I can understand the fear. I was diagnosed in the summer of 2009 and was so afraid that my teeth chattered when I heard the cancer word. Since I have been through the chemo, radiation, surgery, etc. I am still here and am much healthier than that day I got the diagnosis. My last visit to M D Anderson showed no sign of disease. My staging was IIIC with one right pelvic lymph node involved. Figo Grade 2.

    Thing that keeps me going is that I am fine today. I feel good. I even felt fine through the chemo and radiation. Taking one minute, one day at a time and thanking God for those moments is what makes me deal with it.

    {{big hug to you}} You hang in there. Join in the discussions if you like. I just love the gals here. They are an incredible bunch of people in many stages of the fight.

    Thank you
    Hi,
    Thank you for your prompt reply.
    It is so wonderful to talk to a survivor.
    You are a very kind person.
    Thanks for the advice.
    My family and friends have been supportive, but there is something compelling about hearing the same words from someone who has lived through all of the treatments.
    This is the first day that I have felt well since my first chemo treatment, so I decided to watch for the sun.
    Thanks again for being so kind.

    Nikkster
  • jazzy1
    jazzy1 Member Posts: 1,379
    #4
    nikkster said:

    Thank you
    Hi,
    Thank you for your prompt reply.
    It is so wonderful to talk to a survivor.
    You are a very kind person.
    Thanks for the advice.
    My family and friends have been supportive, but there is something compelling about hearing the same words from someone who has lived through all of the treatments.
    This is the first day that I have felt well since my first chemo treatment, so I decided to watch for the sun.
    Thanks again for being so kind.

    Nikkster

    Welcome
    You're in a wonderful spot for hand holding. All the gals on this site have saved me from spiraling down after hearing the word cancer. Hearing the word "cancer" is so frightening and when you know others have gotten thru the process of treatments and follow-up appointments and still surviving, you know it's possible. We can do it, so can you. The more knowledge you can wrap around yourself the better you're able to walk the cancer treatment process.

    Try to be positive and know you will survive. Don't think anything else as life many times doesn't give us the easy path ..at times we must really work to keep on living. This is just a small blimp in the road, and know you'll get over it and be a better person.

    I've learned to enjoy life more and not sweat the small stuff. Just learning to be a better person and take each day at a time.

    Best of luck to you and plse come back and let us know how you're doing....

    Jani
  • Songflower
    Songflower Member Posts: 608
    #5
    jazzy1 said:

    Welcome
    You're in a wonderful spot for hand holding. All the gals on this site have saved me from spiraling down after hearing the word cancer. Hearing the word "cancer" is so frightening and when you know others have gotten thru the process of treatments and follow-up appointments and still surviving, you know it's possible. We can do it, so can you. The more knowledge you can wrap around yourself the better you're able to walk the cancer treatment process.

    Try to be positive and know you will survive. Don't think anything else as life many times doesn't give us the easy path ..at times we must really work to keep on living. This is just a small blimp in the road, and know you'll get over it and be a better person.

    I've learned to enjoy life more and not sweat the small stuff. Just learning to be a better person and take each day at a time.

    Best of luck to you and plse come back and let us know how you're doing....

    Jani

    You can do it!
    I think you chose the right treatment path with chemo and brachy. There is controversy about whole pelvic radiation because if you have a recurrance you need that bone marrow for chemo. The other thing you can also ask about is intraperitoneal chemo and intraveinous chemo. Please discuss it with your Doctor.

    My family has lost so many vacation days and work days to help me too. But you know, they wanted to be there and I have to let them be there. It's time to focus on you. Keep us informed at how you are doing. Most of us have taken Carbo/taxol.

    You're on the prayer list now! Everynight, before I fall asleep I pray for all of us.

    Diane
  • nikkster
    nikkster Member Posts: 10
    #6
    Songflower said:

    You can do it!
    I think you chose the right treatment path with chemo and brachy. There is controversy about whole pelvic radiation because if you have a recurrance you need that bone marrow for chemo. The other thing you can also ask about is intraperitoneal chemo and intraveinous chemo. Please discuss it with your Doctor.

    My family has lost so many vacation days and work days to help me too. But you know, they wanted to be there and I have to let them be there. It's time to focus on you. Keep us informed at how you are doing. Most of us have taken Carbo/taxol.

    You're on the prayer list now! Everynight, before I fall asleep I pray for all of us.

    Diane

    Chemo and Brachi
    Hi,

    Thank you so much for sharing.
    I did not choose chemo and Brachy.
    I chose whole pelvic.
    That was the plan of my original doctor.
    I guess I need to investigate a little more.
    Right now, I have just started the chemo.
    Please know that I am grateful for your input.
    Take care.
    Nikki
  • Always Hopeful
    Always Hopeful Member Posts: 234
    #7
    nikkster said:

    Chemo and Brachi
    Hi,

    Thank you so much for sharing.
    I did not choose chemo and Brachy.
    I chose whole pelvic.
    That was the plan of my original doctor.
    I guess I need to investigate a little more.
    Right now, I have just started the chemo.
    Please know that I am grateful for your input.
    Take care.
    Nikki

    Hi Nikki
    In an earlier post you mentioned something about hoping that you made the right decision for treatment. I'd like to say that any decision you make is the right decision! Don't second guess yourself. Second guessing only drains more energy from you. Believe in yourself and what your mind and body are telling you. Although it seems that most of us started on the standard chemo of carbo/taxol, there have been variations in the administration of it, as well as how (if at all) radiation is given. Some of us have also required additional treatment and do rely on one another's experiences to help better understand and make those decisions.

    Know that the chemo of yesterday is very different from today's. The premeds that are administered now really do help tremendously with the side effects. What chemo protocol have you started?

    Take each moment as it comes...try to stay calm...accept offers of help from others and, although it seems at times very difficult...LIVE, LAUGH, LOVE!!!

    My thoughts and prayers are with you.

    Peace and hope, JJ
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #8
    Always Hopeful said:

    Hi Nikki
    In an earlier post you mentioned something about hoping that you made the right decision for treatment. I'd like to say that any decision you make is the right decision! Don't second guess yourself. Second guessing only drains more energy from you. Believe in yourself and what your mind and body are telling you. Although it seems that most of us started on the standard chemo of carbo/taxol, there have been variations in the administration of it, as well as how (if at all) radiation is given. Some of us have also required additional treatment and do rely on one another's experiences to help better understand and make those decisions.

    Know that the chemo of yesterday is very different from today's. The premeds that are administered now really do help tremendously with the side effects. What chemo protocol have you started?

    Take each moment as it comes...try to stay calm...accept offers of help from others and, although it seems at times very difficult...LIVE, LAUGH, LOVE!!!

    My thoughts and prayers are with you.

    Peace and hope, JJ

    Nikkster
    I responded to your other post and I'm copying it here too. You are doing good with this web board. Best wishes. Mary Ann

    November 3, 2010 - 2:46pm
    Nikkster

    You are new and there is so much to learn!! I've been "in the club" for over 2 years and I've learned alot.

    First of all, welcome. You will find lots of support and info here. This site can be somewhat hard to manuever at first. You posted in the middle of an old thread and I'm answering your post- I hope this discussion doesn't get "lost" here. If no other responses, YOu can always copy and repost as new topic.

    Back to you. It is VERY confusing and scary getting the C word!! I remember my initiation. I agree that you did the best you could with the advice given. That's one problem with laproscopic and robotic surgery - they don't get the best view and maybe it's hard to take all those nodes out. I had the old fashion slice and dice variety.

    Here's my 2 cents. I think CA treatment is a crap shoot.
    1) Check out NCCN.com and use this info as your guide for standard protocols
    2) I think docs like to give us minimal info so we don't get scared. Ask questions, get copies of your records, and be proactive. YOU are the one that will be making the decisions and you need the best information for this. As you've experienced there are many opinions on recommended treatment.
    3) Get another opinion if you want. Most insurances will pay for at least one.
    4) if you don't already, get a gynecologic-oncologist - they are the EXPERTS we need.
    5) ask for an assay/functional profile from your surgery - hopefully they did this. This will tell them the best chemo to give you. This is important!!
    6) I have a port - love it!
    7) Check out alternative treatments too - diet, meditation, yoga, healing touch, accupuncture, exercise. These have helped me alot.
    8) Lower your stress level. I worked almost FT until recently. I'm taking medical leave now and realize I should have done this long ago. Stress lowers immune system and will not help anything!!!
    9) use this board but my docs always frown on it saying info is "unfiltered" which is true. So you will get all kinds of feedback. I think most of it is good.
    10) stay as positive as you can. Ask for help. Sounds like you have great family support which is wonderful.

    My saga - I'll be brief - I have grade 3 papillary serous endometrial cancer initially given stage 3a. Initial tx: 6 rounds of carboplatin and taxol. No radiation. I had over a year treatment free until recurrence in May 2010. My CT/PET scans all showed activity in lymph system - however, interestingly, my nodes from surgery were all negative (so much for that "peace of mind"). Docs thought it was false positive but 2 years later it probably was stage 4 from beginning. Grim thought. Anyway, I have recurrence in supraclavicular lymph nodes (collarbone area) and I'm getting chemo (carboplatin) and radiation and docs think I have good chance of another remission period. Papillary serous, UPSC for short, is notorious for being chronic or incurable whichever word you like to hear - neither, I'm sure. If you have this (it's considered grade 3 and you probably don't), stay vigilant!!

    So, don't give up. It is so overwhelming at first. Docs have lots of tools at their disposal. If you need to vent 1-1 my email is daisyelder@comcast.net.

    Best wishes and many blessings to you. Mary Ann
  • nikkster
    nikkster Member Posts: 10
    #9
    daisy366 said:

    Nikkster
    I responded to your other post and I'm copying it here too. You are doing good with this web board. Best wishes. Mary Ann

    November 3, 2010 - 2:46pm
    Nikkster

    You are new and there is so much to learn!! I've been "in the club" for over 2 years and I've learned alot.

    First of all, welcome. You will find lots of support and info here. This site can be somewhat hard to manuever at first. You posted in the middle of an old thread and I'm answering your post- I hope this discussion doesn't get "lost" here. If no other responses, YOu can always copy and repost as new topic.

    Back to you. It is VERY confusing and scary getting the C word!! I remember my initiation. I agree that you did the best you could with the advice given. That's one problem with laproscopic and robotic surgery - they don't get the best view and maybe it's hard to take all those nodes out. I had the old fashion slice and dice variety.

    Here's my 2 cents. I think CA treatment is a crap shoot.
    1) Check out NCCN.com and use this info as your guide for standard protocols
    2) I think docs like to give us minimal info so we don't get scared. Ask questions, get copies of your records, and be proactive. YOU are the one that will be making the decisions and you need the best information for this. As you've experienced there are many opinions on recommended treatment.
    3) Get another opinion if you want. Most insurances will pay for at least one.
    4) if you don't already, get a gynecologic-oncologist - they are the EXPERTS we need.
    5) ask for an assay/functional profile from your surgery - hopefully they did this. This will tell them the best chemo to give you. This is important!!
    6) I have a port - love it!
    7) Check out alternative treatments too - diet, meditation, yoga, healing touch, accupuncture, exercise. These have helped me alot.
    8) Lower your stress level. I worked almost FT until recently. I'm taking medical leave now and realize I should have done this long ago. Stress lowers immune system and will not help anything!!!
    9) use this board but my docs always frown on it saying info is "unfiltered" which is true. So you will get all kinds of feedback. I think most of it is good.
    10) stay as positive as you can. Ask for help. Sounds like you have great family support which is wonderful.

    My saga - I'll be brief - I have grade 3 papillary serous endometrial cancer initially given stage 3a. Initial tx: 6 rounds of carboplatin and taxol. No radiation. I had over a year treatment free until recurrence in May 2010. My CT/PET scans all showed activity in lymph system - however, interestingly, my nodes from surgery were all negative (so much for that "peace of mind"). Docs thought it was false positive but 2 years later it probably was stage 4 from beginning. Grim thought. Anyway, I have recurrence in supraclavicular lymph nodes (collarbone area) and I'm getting chemo (carboplatin) and radiation and docs think I have good chance of another remission period. Papillary serous, UPSC for short, is notorious for being chronic or incurable whichever word you like to hear - neither, I'm sure. If you have this (it's considered grade 3 and you probably don't), stay vigilant!!

    So, don't give up. It is so overwhelming at first. Docs have lots of tools at their disposal. If you need to vent 1-1 my email is daisyelder@comcast.net.

    Best wishes and many blessings to you. Mary Ann

    Your Feedback
    Hi,Mary Ann,

    Thank you so much1
    You are all so wonderful.
    I am truly awed by the wealth of your knowledge and the quick and practical way that you
    express it. I really did not expect to find this level of support on the board.
    I know every case is different, but I feel that I am learning something from everyone.

    Right now, I am getting IV Chemo. taxol and carboplastin every three weeks.
    I had my first dose on October 26, the next to follow on November 16.
    Both of the doctors that I consulted were gynecological oncologists.
    I will have full pelvic radiation following chemo.
    Three doctors and three opinions, so I chose.

    I started to feel better about two days ago.

    Today, I go for my first blood test after chemo. What questions should I ask about the results?
    Your advice about accepting your decision and thinking positively is long overdue for me.
    I have to believe in what I am doing.

    I will also investigate the other options you suggested.
    My stress level is quite high.


    I am sorry for your diagnosis, but you are doing your best and then beyond that by helping people like me.

    Although I am not completely surgically staged, I am Stage 1 B, Grade 2 with lymphovascular invasion and a large tumor. You have come through a long and difficult journey. There is a certain power when women tell their stories.

    I have had several scares and some breast surgeries, and I know how many more breast cancer patients there are. Removal of my lymph nodes indicated sarcoidosis. I thought I was lucky because I did not have breast cancer
    The emphasis in my area is on breast cancer. The number of cases have to make it a priority.

    Why do we not have a more vigorous campaign for uterine cancer?

    God Bless.
    Thank you!
    Nikkster
  • nikkster
    nikkster Member Posts: 10
    #10
    Always Hopeful said:

    Hi Nikki
    In an earlier post you mentioned something about hoping that you made the right decision for treatment. I'd like to say that any decision you make is the right decision! Don't second guess yourself. Second guessing only drains more energy from you. Believe in yourself and what your mind and body are telling you. Although it seems that most of us started on the standard chemo of carbo/taxol, there have been variations in the administration of it, as well as how (if at all) radiation is given. Some of us have also required additional treatment and do rely on one another's experiences to help better understand and make those decisions.

    Know that the chemo of yesterday is very different from today's. The premeds that are administered now really do help tremendously with the side effects. What chemo protocol have you started?

    Take each moment as it comes...try to stay calm...accept offers of help from others and, although it seems at times very difficult...LIVE, LAUGH, LOVE!!!

    My thoughts and prayers are with you.

    Peace and hope, JJ

    Secong Guessing
    Hi,
    Thank you for your support.
    Sometimes, the facts are right in front of your eyes, but someone has to show you the way.
    You are right, and other people on the board have suggested that you do have to believe in your treatment.

    I must confess that it is an enormous fault of mine (noted by family, friends, and my doctors) that I am very analytical and will mull things over and over again.

    Thank you for the advice.
    Good Luck to you.

    Nikkster
  • nikkster
    nikkster Member Posts: 10
    #11
    jazzy1 said:

    Welcome
    You're in a wonderful spot for hand holding. All the gals on this site have saved me from spiraling down after hearing the word cancer. Hearing the word "cancer" is so frightening and when you know others have gotten thru the process of treatments and follow-up appointments and still surviving, you know it's possible. We can do it, so can you. The more knowledge you can wrap around yourself the better you're able to walk the cancer treatment process.

    Try to be positive and know you will survive. Don't think anything else as life many times doesn't give us the easy path ..at times we must really work to keep on living. This is just a small blimp in the road, and know you'll get over it and be a better person.

    I've learned to enjoy life more and not sweat the small stuff. Just learning to be a better person and take each day at a time.

    Best of luck to you and plse come back and let us know how you're doing....

    Jani

    Your Positive Attitude
    Hi,
    I think I equate the diagnosis to post traumatic stress. We all have a life threatening situation that may happen again. That is what happens to soldiers.
    That is a blow to our minds and bodies.
    Yet, you offer some good advice for coping.
    It makes me feel like all of you are saying to find a way to live with this.

    You are saying, "We did it." And I am going to say that I have some very strong ladies in my company! I will find a way, also.
    Thank you from the bottom of my heart.


    Nikkster
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #12
    nikkster said:

    Your Positive Attitude
    Hi,
    I think I equate the diagnosis to post traumatic stress. We all have a life threatening situation that may happen again. That is what happens to soldiers.
    That is a blow to our minds and bodies.
    Yet, you offer some good advice for coping.
    It makes me feel like all of you are saying to find a way to live with this.

    You are saying, "We did it." And I am going to say that I have some very strong ladies in my company! I will find a way, also.
    Thank you from the bottom of my heart.


    Nikkster

    your questions
    Re: why don't we have more vigorous campaign for UC - it is now starting, thank goodness. Long overdue
    Re: questions for your doc. I'm sure they will keep you posted on what is relevant (CA125 and other blood test results). I think your job is to manage your symptoms, stay strong and positive in mind and body, and BELIEVE you are doing well and healing.

    Again,l my best to you. Mary Ann

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