Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatm

1246722

Comments

  • california_artist
    california_artist Member Posts: 816 Member
    liocee I hope that's how you spell your web name
    When I saw your post, it just stopped my in my tracks. I cannot begin to say how very, very sorry I was to hear how things are going for you. I hope you have people around to keep you feeling loved and hopeful. I really don't know what to say, just I feel for your pain.

    As always, love and hope,

    claudia
  • lociee
    lociee Member Posts: 102

    liocee I hope that's how you spell your web name
    When I saw your post, it just stopped my in my tracks. I cannot begin to say how very, very sorry I was to hear how things are going for you. I hope you have people around to keep you feeling loved and hopeful. I really don't know what to say, just I feel for your pain.

    As always, love and hope,

    claudia

    Thanks Claudia
    I appreciate your concern. I do have friends who are extremely helpful. My daughter lives in New York City,
    but calls daily and comes to visit when she gets a chance. Sometimes, I'm okay with my prognosis, but there
    are also times when I feel lost and scared. I stopped radiation last week and the tumor pain is increasing daily.
    I see my oncologist tomorrow, but he said I have to wait a few weeks before I can have any chemo - he's
    talking about some trials - but I don't know if I want to do that. Basically you have to stay in the hospital and
    they pump you with strong chemo for days. It burns your skin off! Anyway, tomorrow he will prescribe a stronger
    pain killer - I have percocet, but it does not help much. I'm still working so have to take something that reduces
    the pain, but doesn't make me loopy. Anyway, thanks for your note - it means a lot to me.
    What is your situation? Mia
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member

    Roll Call
    Hi, my name is Pat and I am from Minneapolis, MN. I was diagnosed with Breast Cancer in Oct 1998, had a lumpectomy and eventually, a bi-lateral mastectomy. I had 4 Chemo's and 5 years of Tamoxifin. Then, 10 years later in Oct 2008, I had stomach pain and they found a Fibroid. I had a Hysterectomy on Oct 15, 2008 to remove it. The pathology showed more cancer - this time it was UPSC. I had a second surgery on Dec 9, 2008 to take out the remainder of the Cervix, that had caused problems with the first surgery & lymph nodes (all negative). I have done 3 rounds of chemo - Taxol/Carboplatin, 25 external radiation & 4 brachy's. The plan was to have 3 more chemo's but you know what they say about well laid plans... More stomach pain so another PET CT showed more cancer by my liver. So, now, there will be more than 3 more chemo's to try to shrink it. It kind of makes you wonder what else can go wrong. But this site is a God Send. It is so good to hear from people who know what you are going through. Family and friends are great but they don't always understand your feelings.
    Thank you all for being here.

    Hi, Pat & welcome!
    You poor thing! You're living my darkest fear: that I will have a recurrance before I finish my initial round of treatment. It happens and I am so sorry that it happened to you before you even got a chance for a reprieve.

    I had my hysterectomy & debulking surgery for UPSC in October 2008, also, the same time as your initial surgery. I'm so sorry that you had to have 2 surgeries so close together! No lymph node involvement but mets to the liver later; I guess it doesn't matter what stage they called it at the time of the 2nd surgery. ((((Pat))))) Is it the UPSC that metasticized near the liver, or another primary cancer? I have no idea which is better! I am having trouble finding any good information online about 'mets', so anything you can share that you learn from your oncologist would be very helpful for those on this Board who are dealing with recurrance, and those of us who worry about it and would like to know more. Anyway, welcome welcome.

    I have UPSC Stage III-c, and had 6 rounds of cabo/taxol from November 2008 to the end of March 2009; then external pelvic radiation all of May with my last external radiation treatment next Tuesday (28 total rounds); which will be followed by 3 internal radiation treatments June 17th, 24th, and July 1. I have a 2.7mm 'nodule' on my lung, according to my last CT-scan, which both my oncologists say is NOTHING, but that they will check on when I have my next CT-scan mid-July. So I definitely feel your pain, Pat, and share yur fears.
  • desertflower
    desertflower Member Posts: 3

    Welcome, Desertflower! Try not to worry.
    If there's one thing I've learned by this cancer experience, it's that 'borrowing trouble' by trying to anticipate every possible contingency will only exhaust and distress you. So please try not to let your imagination go wild, peeking around every corner ahead of time. Your symptoms and test results so far don't sound like cancer to me, at least not the scary aggressive UPSC kind that I have, which is a cancer with NO symptoms and NO pain. And bleeding and swelling would be the symptoms I would expect for the more common type of highly-curable uterine cancer. So, deep breath! (When you see all of my cancer research on this Board, you will be tempted to shoot back that I should 'practice what I preach', but I have always been insatiably curious and research-oriented about every interesting thing that captures my imagination, and now "cancer" is on that list! I've always been that way, and perhaps we are kindred spirits in that regard. You wouldn't believe all the useless information in my head on a million different topics!)

    And if it turns out that it is cancer, we're here for you. If you get the cancer diagnosis, THEN you'll want to be very pro-active, informed and prepared for each step of the journey. But for now, pre-diagnosis, 'ignorance is bliss', so try not to make yourself crazy just yet. BIG HUGS! We all know how scary this is!

    Thanks lindaprocopio & ro10...
    ...for the comments. This happening really makes you look around and realize that if you become ill - there are sooo many loose ends in your life that you need to straighten out and line up in case things do get hairy. I'm trying not to make myself crazy but I'm going to keep myself so busy between now and the surgery tying up loose ends I won't have time to go crazy although it may look like I've gone nuts because I'm jumping from one thing to another. My husband doesn't have a supportive family nor do I - my friends are spread out all over the country (veteran trucker - that's what I get for my gypsy lifestyle coming back to bite me!) I'm seeing with clearer eyes my own weakest links and if I get a chance to do better in the future I definitely will.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    lociee said:

    Thanks Claudia
    I appreciate your concern. I do have friends who are extremely helpful. My daughter lives in New York City,
    but calls daily and comes to visit when she gets a chance. Sometimes, I'm okay with my prognosis, but there
    are also times when I feel lost and scared. I stopped radiation last week and the tumor pain is increasing daily.
    I see my oncologist tomorrow, but he said I have to wait a few weeks before I can have any chemo - he's
    talking about some trials - but I don't know if I want to do that. Basically you have to stay in the hospital and
    they pump you with strong chemo for days. It burns your skin off! Anyway, tomorrow he will prescribe a stronger
    pain killer - I have percocet, but it does not help much. I'm still working so have to take something that reduces
    the pain, but doesn't make me loopy. Anyway, thanks for your note - it means a lot to me.
    What is your situation? Mia

    Mia, you are an inspiration
    Mia,

    Your story is amazing. I wonder if I would be as courageous as you - dealing with serious pain and still wanting to work!! I do know that being busy helped me "get out of my head" which is a dangerous and stressful place for me to be.

    God bless you and may you get relief from your pain.

    Hugs and prayers. Mary Ann
  • Kathy09
    Kathy09 Member Posts: 99 Member
    daisy366 said:

    Mia, you are an inspiration
    Mia,

    Your story is amazing. I wonder if I would be as courageous as you - dealing with serious pain and still wanting to work!! I do know that being busy helped me "get out of my head" which is a dangerous and stressful place for me to be.

    God bless you and may you get relief from your pain.

    Hugs and prayers. Mary Ann

    Not as positive as the rest
    Diagnosed breast cancer Jan. 09 4 Rounds of chemo and just had lumpectomy 6-8-09 I just found out did'nt get clear margins have another surgery scheduled 6-22-09 I feel like this will never end. Miss alot of work
  • Gloria C
    Gloria C Member Posts: 23
    My name is Gloria
    My name is Gloria. I just rec'd pathology report from D&C that showed Uterine Cancer, Grade 3 clear cell. Gyn/Oncologist says removing all female parts and removal of lymph glands to to heart. Level to be determined and then immediate chemo. Alone & Terrified.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    You're not alone NOW; you have us! BIG HUGS!!
    Time to take a deep breath. I'm so sorry that you have to go through this. Most of us posting here have been where you are and can well remember the terror and dispair. Believe me that this is all MUCH more do-able and survive-able that you think right now. You have an aggressive type of cancer cell and you will want that chemo following your surgery. But for now, focus on your upcoming surgery. Will a gynecologic oncologist be doing the surgery? That is my strongest recommendation at this juncture; you need your surgeon to be a gyn-onc, even if you have to travel a little distance. I have 25 lymph nodes removed along with my hysterectomy, so I know what you are facing here.

    If you really feel alone, check with the American Cancer Society about any support groups that may be in your area. And we are here to help with any questions you may have.
  • Gloria C
    Gloria C Member Posts: 23

    You're not alone NOW; you have us! BIG HUGS!!
    Time to take a deep breath. I'm so sorry that you have to go through this. Most of us posting here have been where you are and can well remember the terror and dispair. Believe me that this is all MUCH more do-able and survive-able that you think right now. You have an aggressive type of cancer cell and you will want that chemo following your surgery. But for now, focus on your upcoming surgery. Will a gynecologic oncologist be doing the surgery? That is my strongest recommendation at this juncture; you need your surgeon to be a gyn-onc, even if you have to travel a little distance. I have 25 lymph nodes removed along with my hysterectomy, so I know what you are facing here.

    If you really feel alone, check with the American Cancer Society about any support groups that may be in your area. And we are here to help with any questions you may have.

    Thanks!
    Have an GYN/Oncologist who comes highly recommended. Am fortunate enough to have a great medical team. As for the emotional part of this, so far this has been the only forum that is active that I've found so far. No support groups nearby, so internet will be it. It all happened last week and now they want to do this enormous surgery this week. Trying to wrap my arms around it is difficult to say the least. Not even sure if it's worth fighting??? Sounds kind of hopeless on alot of sites. Diminished quality of life, financial ruin, etc. Guess I'm just overwhelmed...... Generally a very positive person....but this.....
  • Pat from MN
    Pat from MN Member Posts: 9
    Gloria C said:

    Thanks!
    Have an GYN/Oncologist who comes highly recommended. Am fortunate enough to have a great medical team. As for the emotional part of this, so far this has been the only forum that is active that I've found so far. No support groups nearby, so internet will be it. It all happened last week and now they want to do this enormous surgery this week. Trying to wrap my arms around it is difficult to say the least. Not even sure if it's worth fighting??? Sounds kind of hopeless on alot of sites. Diminished quality of life, financial ruin, etc. Guess I'm just overwhelmed...... Generally a very positive person....but this.....

    Gloria
    I understand how shell shocked you must be. I have found that there are lots of very helpful and supportive people on this site. I think that it is well worth the fight. This is the second different cancer that I have had and it just metasticized (not sure of sp). And this has put MORE fight into me. I won't say that everything is rosy all the time and your quality of life may be diminished for a time but it is not a permanent things. I can relate to the financial issues but that too will pass. Just take things one day at a time (I sound like a sports coach) and one of these days, things will improve. You will be in my prayers.
    Pat
  • Gloria C
    Gloria C Member Posts: 23

    Gloria
    I understand how shell shocked you must be. I have found that there are lots of very helpful and supportive people on this site. I think that it is well worth the fight. This is the second different cancer that I have had and it just metasticized (not sure of sp). And this has put MORE fight into me. I won't say that everything is rosy all the time and your quality of life may be diminished for a time but it is not a permanent things. I can relate to the financial issues but that too will pass. Just take things one day at a time (I sound like a sports coach) and one of these days, things will improve. You will be in my prayers.
    Pat

    thanks Pat
    shell-shocked is a good description. raw is another. so many worries. worried about how to tell/take care of my very elderly parents and how to take care of my dog & 2 kitties. worried about keeping my job; worried about the financial issues; and, sheepishly, worried about losing my hair and looking even worse. I'm already very very thin and bald will be really hideous.
  • pjk
    pjk Member Posts: 17
    Gloria C said:

    thanks Pat
    shell-shocked is a good description. raw is another. so many worries. worried about how to tell/take care of my very elderly parents and how to take care of my dog & 2 kitties. worried about keeping my job; worried about the financial issues; and, sheepishly, worried about losing my hair and looking even worse. I'm already very very thin and bald will be really hideous.

    Gloria -
    I was just diagnosed this month with Grade III uterine cancer. Surgery just was scheduled for June 29. Lots of worries here too. Lots of faith also! We were pretty shocked all last week, but it has settled in more. Now we are ready for the fight. Give yourself a little time. You will settle into the battle too.

    It is hard when you have people like your parents who depend on you. When you feel ready, start reaching out to everyone in your sphere to help you with them. If you can be specific in their needs to the helpers, it works better. I have two elderly parents and three children in my home. My husband is good but he cannot do it all. We need people from the outside to help us too! My pastor says it actually is good for the helpers too.
  • Ro10
    Ro10 Member Posts: 1,561 Member
    Gloria C said:

    My name is Gloria
    My name is Gloria. I just rec'd pathology report from D&C that showed Uterine Cancer, Grade 3 clear cell. Gyn/Oncologist says removing all female parts and removal of lymph glands to to heart. Level to be determined and then immediate chemo. Alone & Terrified.

    Sorry to hear you story Gloria
    Welcome to the site, but so sorry you are joining our journey. I can certainly understand the terror you are feeling. When I was first diagnosed I read things on the internet and they were so scary, but most of what I read was old statistics. They are making such progress with the treatment of cancer. I know I was terrified of the side effects of chemo. But that was something that never happened. I got pre-medication and meds to take after the chemo, and never had any problems.

    Just try to take one day at a time. Ask questions when you have them. I am glad you have a gyn/onocologist to do your surgery. They will be able to do proper staging to determine your stage of cancer. I have III-C and had 21 lymph nodes removed.

    Does the hospital you are going to have your surgery have any support groups. When you are in the hospital you might ask to talk to a social worker that can help you with issues you have..... family care, financial concerns and support for you.

    Good luck with your surgery. We are here for you, so you are not alone.
  • kkstef
    kkstef Member Posts: 688 Member
    Gloria C said:

    My name is Gloria
    My name is Gloria. I just rec'd pathology report from D&C that showed Uterine Cancer, Grade 3 clear cell. Gyn/Oncologist says removing all female parts and removal of lymph glands to to heart. Level to be determined and then immediate chemo. Alone & Terrified.

    Thinking of you!
    Gloria....I know how shocking the news must be to you! There are sooo many wonderful folks on this site that can offer you lots of good information and helpful suggestions. I wish this site had been active when I was first diagnosed. I have learned so much in the short time I have "checked back in"

    Try to spend a little time everyday, an hour if possible, NOT thinking about cancer! Spend time doing something that is relaxing....a nice bath with candles, listening to music, spending time in a park, etc.... Dealing with all of the things you are trying to handle must be very draining and taking a little time for yourself can be reguvenating.

    The suggestion to ask to see a social worker is a great one....they are a wealth of information! I also agree that the chemo treatments were very "do-able"....they medicate you prior to the treatment so nausea and vomiting was not an issue for me. Keep asking questions!

    Karen
  • Reddie
    Reddie Member Posts: 72
    pjk said:

    Gloria -
    I was just diagnosed this month with Grade III uterine cancer. Surgery just was scheduled for June 29. Lots of worries here too. Lots of faith also! We were pretty shocked all last week, but it has settled in more. Now we are ready for the fight. Give yourself a little time. You will settle into the battle too.

    It is hard when you have people like your parents who depend on you. When you feel ready, start reaching out to everyone in your sphere to help you with them. If you can be specific in their needs to the helpers, it works better. I have two elderly parents and three children in my home. My husband is good but he cannot do it all. We need people from the outside to help us too! My pastor says it actually is good for the helpers too.

    don't be afraid to spread news about your diagnois
    I was diagnosed last March with Stage IIIC Grade 11. I was crying and scared to get the news from the phone call from Gyn about the results from biosphy. I was informed that before operation they said that I had "pre-cancer" but then after operation with pathology report that I'm on stage IIIc which is unexpected. I informed the news to my family and friends at work. Surprisely, many of my co-workers had going through cancer in their lives before and shared it with me so I don't feel alone anymore. You will be surprise how many people who are willing to be there for you to help even though I didn't ask for help. Don't be afraid to speak up...they are willing to pray for you and make you feel stronger again.
    hugs, Reddie
  • deanna14
    deanna14 Member Posts: 732
    Gloria C said:

    Thanks!
    Have an GYN/Oncologist who comes highly recommended. Am fortunate enough to have a great medical team. As for the emotional part of this, so far this has been the only forum that is active that I've found so far. No support groups nearby, so internet will be it. It all happened last week and now they want to do this enormous surgery this week. Trying to wrap my arms around it is difficult to say the least. Not even sure if it's worth fighting??? Sounds kind of hopeless on alot of sites. Diminished quality of life, financial ruin, etc. Guess I'm just overwhelmed...... Generally a very positive person....but this.....

    Oh Gloria...
    Please don't ever say that it is hopeless! There is always hope, and that is what you must hold on to now! It is all overwhelming, especially in the beginning. I was told at one point that the internet is one of the last places to look for information. Be sure when you are reading on the internet that you are looking to see how current the information is. I have a hard time finding much that is less than 2 years old. 2 years is really old in the world of cancer research. Anyway... YOU are not a statistic. There is only ONE who can decide when it is your time. No doctors or statistics are going to determine when the Lord takes you home. Please don't allow cancer to have power over you!!!
    Please consider getting and reading a book called "There's No Place Like Hope" by Vickie Girard. I just read it a couple of weeks ago, but wish I would have had it when my journey began. It is excellent and very easy read, even if you are not much of a reader.
    Good health and God be with you as you go through and heal from your surgery. Take one hurdle at a time. And believe that you are not alone! The Lord is walking with you through this journey and myself and all of the wonderful ladies on this site are here for you.
  • Gloria C
    Gloria C Member Posts: 23
    Thanks everybody!
    Thanks so much for the support!!!! Totally appreciate it!!!! Speaking to the Gyn/Onc today. Have alot of questions before I decide if they can slice & dice me.
  • MaryAnnOnTheBay
    MaryAnnOnTheBay Member Posts: 20
    Gloria C said:

    Thanks everybody!
    Thanks so much for the support!!!! Totally appreciate it!!!! Speaking to the Gyn/Onc today. Have alot of questions before I decide if they can slice & dice me.

    Hi, Gloria - I agree about telling people and accepting help
    Hi Gloria. When I got my initial diagnosis in February 2006, I too was shocked, but couldn't find anyone with UPSC. After a few days I told people at work and where I live. One neighbor volunteered to walk the dog, another to drive me home from the hospital. My boss was very supportive and the office manager reviewed my sick leave and vacation time with me. I had laproscopic surgery, took three weeks off work (I think I could have done it in two). I'm a secretary, so my work is sedentary. I was able to work through chemo, just taking the actual chemo day off work, usually a Thursday. Friday would be ok, Saturday I would feel sick, weak. Sunday not very good either. I had the option of going to work on Monday or not and I don't think I missed any Mondays. I bought two wigs, but often just wore a scarf. American Cancer Society had a program "Look Good, Feel Better" that gives you some free cosmetics, shows you some ways to tie scarfs fashionably, and I did that and started using cosmetics again for the first time in 30 years (I was 70 years old in 2006). About 4 weeks after surgery I was riding my bicycle part of the way to work again, same as I had before diagnosis. The help and support I got from many people around me was very good for me. And it was nice that in the law office where I worked, we had a client, cancer patient who had been fired, bring suit and win. Good luck to you in your scary journey and may you be "Dancing with NED" (no evidence of disease) this time next year. Mary Ann on San Francisco Bay
  • nursey420
    nursey420 Member Posts: 52 Member

    Hi, Gloria - I agree about telling people and accepting help
    Hi Gloria. When I got my initial diagnosis in February 2006, I too was shocked, but couldn't find anyone with UPSC. After a few days I told people at work and where I live. One neighbor volunteered to walk the dog, another to drive me home from the hospital. My boss was very supportive and the office manager reviewed my sick leave and vacation time with me. I had laproscopic surgery, took three weeks off work (I think I could have done it in two). I'm a secretary, so my work is sedentary. I was able to work through chemo, just taking the actual chemo day off work, usually a Thursday. Friday would be ok, Saturday I would feel sick, weak. Sunday not very good either. I had the option of going to work on Monday or not and I don't think I missed any Mondays. I bought two wigs, but often just wore a scarf. American Cancer Society had a program "Look Good, Feel Better" that gives you some free cosmetics, shows you some ways to tie scarfs fashionably, and I did that and started using cosmetics again for the first time in 30 years (I was 70 years old in 2006). About 4 weeks after surgery I was riding my bicycle part of the way to work again, same as I had before diagnosis. The help and support I got from many people around me was very good for me. And it was nice that in the law office where I worked, we had a client, cancer patient who had been fired, bring suit and win. Good luck to you in your scary journey and may you be "Dancing with NED" (no evidence of disease) this time next year. Mary Ann on San Francisco Bay

    welcome Gloria
    I felt the same way when dignosised in Jan. But surgery external and internal radiation and now life is getting back to normal. This site was only support group i could find. Even at the cancer center where i was treating i was only one with "my type" of cancer. It can be very scary but some times we need to face the scary stuff to get on with life. Good luck Gloria
    Lisa
  • Ro10
    Ro10 Member Posts: 1,561 Member
    Gloria C said:

    Thanks everybody!
    Thanks so much for the support!!!! Totally appreciate it!!!! Speaking to the Gyn/Onc today. Have alot of questions before I decide if they can slice & dice me.

    Now our "Sisterhood " is close to 60 members
    When I joined this "Sisterhood" in January I was the 10th person to sign on with UPSC. I have Stage III-C, as do many others. Now we have close to 60 "Sisters" who have signed on for themselves or family members. I know I have found this site to be so helpful to me as I go on this journey. I am amazed at the strength and courage that so many of our "Sisters" have displayed. I am touched by the caring words that I have received and reading the encouragement and helpful suggestions given to others. We have had many different treatment plans, but basically the same drugs and radiation. Some are finished with their treatments, and others are closing in on the end of their treatments. We have had many who are dancing with "NED". I hope to join that dance with others. Thank you everyone for everything, and may we continue to be an encouragement to others who find themselves on this difficult journey. BIG HUGS to all of you.