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  • AWK
    AWK Member Posts: 364 Member
    bob13440 said:

    Anne

    The ups and downs in this first week have been incredible as I'm sure you're all familiar with. She's so tired and keeps coughing. They took a lot of blood from her and built up fluids so I'm sure that's a big factor. She's still going to work everyday because she says it keeps her mind off of things,  but I wonder if it's hurting her physically. She's also scared about surgery, says, "what if i don't wake up?" I try to assure her that these doctors are professionals and she is going to feel much better after surgery. I love her so much, but I'm not sure my encouagement is having an affect on her anymore. I'mfeeling so helpless. I will definitely keep the updates coming.

    She is probably beat

    I know I get very tired but keep slogging through.  The time between diagnosis and surgery I kept up the full workload which was good for me mentally.  Took my mind off of things.  My husband still gets upset with me and my current workload (50 plus hours per week) and as some of the ladies know I was struggling this past fall.  Now I have things on an even keel, the distraction of work is good for me.  She has to listen to her body and if not, well my husband would email or text my boss that I wasn't coming in without my knowing.  which was the right thing at the time.  Just remind her she needs to go into surgery as strong as possible.  I had lost quite a bit of blood before mine and my doctors really laid down the law about getting strong.  First time I had ever been under anesthesia and I too thought about not waking up.  But my doctor walked me through it all which helped.  

    Hang tough.  Anne

  • bob13440
    bob13440 Member Posts: 66
    Sandy3185 said:

    Fear

    Hi Bob. So sorry that you are both going through this. The waiting is the worse part. Waiting for answers, waiting for diagnosis, waiting for surgery. So much to worry about. I too worried that I wouldn't wake up, but I did. The answers came, the treatments occurred and I got better. This is serious surgery but you need to trust that your doctor knows what he is doing and that all will go well. Let your wife know that we are all pulling for her and keeping her in our prayers. Working is a good thing if your wife feels up to it. It will help her keep her mind off the surgery and keep a sense of normality. Maybe visits from family will give her some comfort.  I know I tried to keep my children's spirits up, as well as my husbands. This, in turn, helped me to think positively and I went into surgery sure that not only would I survive but that I would beat this monster within me. I hope your wife is reading our discussion boards and can take some comfort from the stories that unfold here.

    Sandy

    exhaling

    I hope you know how much this is helping. So much better after I read these great comments. Yes Sandy, she reads all of these.

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    bob13440 said:

    exhaling

    I hope you know how much this is helping. So much better after I read these great comments. Yes Sandy, she reads all of these.

    Bob, you and your wife can do this!

    Bob,

    I am now almost a year and a half out from when I heard those words:  "You have cancer". In the beginning, when I was desperately trying to wrap my mind around this new reality I was facing, I felt as though I was losing my mind. The terror I felt was riveting and paralyzing.  That time of upheaval is behind me, thank goodness! I don 't know what my future holds, as no one does, but for now I am living life as fully and as meaningfully as I can. A new employee told me yesterday that she was very surprised to learn about my cancer diagnosis as I am one of the most upbeat and positive persons she has ever met. What is your wife's first name? It seems that I am being impersonal referring to your loved one as your wife. 

    Warm Wishes,

    Cathy

  • bob13440
    bob13440 Member Posts: 66
    Abbycat2 said:

    Bob, you and your wife can do this!

    Bob,

    I am now almost a year and a half out from when I heard those words:  "You have cancer". In the beginning, when I was desperately trying to wrap my mind around this new reality I was facing, I felt as though I was losing my mind. The terror I felt was riveting and paralyzing.  That time of upheaval is behind me, thank goodness! I don 't know what my future holds, as no one does, but for now I am living life as fully and as meaningfully as I can. A new employee told me yesterday that she was very surprised to learn about my cancer diagnosis as I am one of the most upbeat and positive persons she has ever met. What is your wife's first name? It seems that I am being impersonal referring to your loved one as your wife. 

    Warm Wishes,

    Cathy

    Lorraine

    shame on me for not sharing this information until now. She is always working her butt off and is out of town until later today. I'm still trying to talk her into taking a week off before surgery. I read her these comments from all of you kind people and believe me, it helps a lot. You're so right, wrapping our mind around this is so hard and yes, I feel like I'm losing mine too. Still 13 days away from surgery. So glad I discovered this group though.

  • cleo
    cleo Member Posts: 144
    She will probably be better

    She will probably be better working as it is the waiting and being reliant on everyone else that is hard!  2007 Grade 4 carcino sarcoma.  NED so don't read and worry as statistics only show one side of the story.     Trust your medical team and be positive.  I worried more about what was happening with my family than with me as I could get on with beating this and they could only watch.  Couldn't talk to my husband as he was a wreck and wanted to keep 'mulling over'  My son was brilliant.    Matter of fact approach and assistance and plenty of humour.  I wasn't sick...just angry and gettng on with it!!!      I wish you both well.

  • bob13440
    bob13440 Member Posts: 66
    Abbycat2 said:

    Bob, good choice in selecting a gyne oncologist

    Good evening, Bob . I know how terribly difficult this is for you and your wife and I wish I had the power to make your worries disappear. Selecting a gynecologic oncologist was a wise choice as these specialists are trained to handle below the belt female cancers. You mention fluid being drained. Does your wife have ascites? 

    Wishing you and your wife only the best,

    Cathy

    Cathy

    yes, she has ascites. What can you tell us about this? Sorry for the delay, just noticed you asked that

  • bob13440
    bob13440 Member Posts: 66
    cleo said:

    She will probably be better

    She will probably be better working as it is the waiting and being reliant on everyone else that is hard!  2007 Grade 4 carcino sarcoma.  NED so don't read and worry as statistics only show one side of the story.     Trust your medical team and be positive.  I worried more about what was happening with my family than with me as I could get on with beating this and they could only watch.  Couldn't talk to my husband as he was a wreck and wanted to keep 'mulling over'  My son was brilliant.    Matter of fact approach and assistance and plenty of humour.  I wasn't sick...just angry and gettng on with it!!!      I wish you both well.

    question

    my wife us having chemo once a week for 5 months. this seems very agressive. Any thoughts?

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    bob13440 said:

    question

    my wife us having chemo once a week for 5 months. this seems very agressive. Any thoughts?

    There are many different ways

    There are many different ways chemo is given.   Some once a month for 6 months, every couple of weeks, etc. etc.    With the once a month, the dose of chemo is larger than the once every several weeks, etc.   I, for one, had a reaction, so instead of once a month, I went every two weeks for six months.   With it being every week, the dose will probably be lower so that it will be more tolerable and your wife can handle it better.

    The slower and longer a drip is the better is what I heard.

  • bob13440
    bob13440 Member Posts: 66
    Kaleena said:

    There are many different ways

    There are many different ways chemo is given.   Some once a month for 6 months, every couple of weeks, etc. etc.    With the once a month, the dose of chemo is larger than the once every several weeks, etc.   I, for one, had a reaction, so instead of once a month, I went every two weeks for six months.   With it being every week, the dose will probably be lower so that it will be more tolerable and your wife can handle it better.

    The slower and longer a drip is the better is what I heard.

    Ok

    thanks Kaleena. Any bit of info or advice is greatly appreciated.

  • Ro10
    Ro10 Member Posts: 1,561 Member
    bob13440 said:

    Ok

    thanks Kaleena. Any bit of info or advice is greatly appreciated.

    Bob

    i am surprised they can tell you how much chemo Lorraine will need before surgery is done.  Most of us had chemo every three weeks with a combination of taxol/ carboplatinum For a total of 6 treatments.  I had the "Sandwich treatment" in which 3 chemo treatments, the radiation treatments, then 3 more chemo treatments were given. 

    Some people did have weekly treatments when smaller doses of taxol were given weekly, and then every 3 weeks the carbo platinum was added.  It is thought that the lower doses given weekly are easier on the body and tolerated better.  

    Only a few people had chemo and radiation at the same time.  I would think that would be hard.

    I hope that Lorraine will be getting a port for the chemo and labs.  Chemo is very hard on the veins,and having chemo weekly will require a lot of sticks.  They draw labs before each chemo to make sure the blood counts ( both red and white blood cell counts) are okay to receive  the chemo.  

    The port can be used later for CAT scans, too.  I have had my port for almost 6 years now. 

    I hope that you and Lorraine have a good weekend.  We all know how hard the waiting is.  Remember one day at a time.  I peace and caring.

     

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    Ro10 said:

    Bob

    i am surprised they can tell you how much chemo Lorraine will need before surgery is done.  Most of us had chemo every three weeks with a combination of taxol/ carboplatinum For a total of 6 treatments.  I had the "Sandwich treatment" in which 3 chemo treatments, the radiation treatments, then 3 more chemo treatments were given. 

    Some people did have weekly treatments when smaller doses of taxol were given weekly, and then every 3 weeks the carbo platinum was added.  It is thought that the lower doses given weekly are easier on the body and tolerated better.  

    Only a few people had chemo and radiation at the same time.  I would think that would be hard.

    I hope that Lorraine will be getting a port for the chemo and labs.  Chemo is very hard on the veins,and having chemo weekly will require a lot of sticks.  They draw labs before each chemo to make sure the blood counts ( both red and white blood cell counts) are okay to receive  the chemo.  

    The port can be used later for CAT scans, too.  I have had my port for almost 6 years now. 

    I hope that you and Lorraine have a good weekend.  We all know how hard the waiting is.  Remember one day at a time.  I peace and caring.

     

    Thinking about you , Bob, and Lorraine

    Bob &. Lorraine,

       Please don't feel badly, Bob, about not mentioning Lorraine's name earlier.  Considering all that you are grappling with that is the least of your troubles. You have received feedback from extraordinary women here, many of whom have been walking this journey for a long time and have been an inspiration to me as well, including Hopeful162 , Pinky 104, Kaleena, Conniesw and remarkable Ro. Then there are the "new" women here like AWK, Sandy and me. What I think is most important for you and Lorraine to recognize right now is that all of us are still thriving . We have not died from cancer and it is quite likely that cancer will not take many of us out. Even though you feel as though you are losing your mind right now, believe me Bob this horrible experience will become more bearable. It has for me.  You asked me about ascites. I had a positive wash- that is, cancer was found floating around in my peritoneal cavity at the time of my surgery . I had ascites. I don't know much more than that about it.

    Be gentle with yourself at this most difficult time. Like so many aspects of life , this too will pass.

    Warmly,

    Cathy

     

  • It happened to Me
    It happened to Me Member Posts: 206 Member
    Welcome Bob and Lorraine

    You have already witnessed the love and support from this board.  I love this group and the information and encouragement they have provided.  I was diagnosed in June, 2013 at the age of 51.  I had UPSC as well.  I had surgery in July, 2013 and started chemo. in Aug. 2013.  The gyn onc. determined that I would benefit from radiation.  I had 6 rounds of carbo./taxel.  I lost my hair and chose to not get a wig.  I decided that I would get my hair shaved the minute I found out I was losing it.  Some wait until it has all fallen out.

    A couple of tidbits that I can think of that haven't been mentioned is to decide before it actually happens what you will do if you lose your hair.  Don't try to go off the meds too early.  If something isn't working, tell the doctor and nurses.  If you have to have chemo., keep track of anything new that happens to you.  There's a possibility of neuropathy, nausea, hair loss, fatigue etc.  The nurses know what red flags they are looking for.  If you have alot of people who want to know how Lorraine is doing and you don't want to make tons of phone calls, use facebook or caringbridge.org as a means of getting information out.  I used caringbridge and it was a lifesaver.  It also is a good way to journal for your own sanity.  You can give as much or as little information as you feel like.  Consider changing your lifestyle if need be.  Stay away from sugar.  Keep stress as low as possible.  Laugh alot  (I made this horrible journey fun 'so to speak' ".   Ask for help.

    As you know more after surgery, there will be more that we can share with you.  I read and agree with all the encouragement that has already been written.

    Lorraine has become a member of the Peach Sisterhood.  You are a terrific husband to search out a support group for both of you. 

    Jeanette

  • bob13440
    bob13440 Member Posts: 66

    Welcome Bob and Lorraine

    You have already witnessed the love and support from this board.  I love this group and the information and encouragement they have provided.  I was diagnosed in June, 2013 at the age of 51.  I had UPSC as well.  I had surgery in July, 2013 and started chemo. in Aug. 2013.  The gyn onc. determined that I would benefit from radiation.  I had 6 rounds of carbo./taxel.  I lost my hair and chose to not get a wig.  I decided that I would get my hair shaved the minute I found out I was losing it.  Some wait until it has all fallen out.

    A couple of tidbits that I can think of that haven't been mentioned is to decide before it actually happens what you will do if you lose your hair.  Don't try to go off the meds too early.  If something isn't working, tell the doctor and nurses.  If you have to have chemo., keep track of anything new that happens to you.  There's a possibility of neuropathy, nausea, hair loss, fatigue etc.  The nurses know what red flags they are looking for.  If you have alot of people who want to know how Lorraine is doing and you don't want to make tons of phone calls, use facebook or caringbridge.org as a means of getting information out.  I used caringbridge and it was a lifesaver.  It also is a good way to journal for your own sanity.  You can give as much or as little information as you feel like.  Consider changing your lifestyle if need be.  Stay away from sugar.  Keep stress as low as possible.  Laugh alot  (I made this horrible journey fun 'so to speak' ".   Ask for help.

    As you know more after surgery, there will be more that we can share with you.  I read and agree with all the encouragement that has already been written.

    Lorraine has become a member of the Peach Sisterhood.  You are a terrific husband to search out a support group for both of you. 

    Jeanette

    Jeanette

    Very inspiring words, thank you! Interesting strategy, shaving your head, will discuss that with Lorraine. About a year and a half since you were diagnosed, you seem to be doing great.  How are you feeling these days? Do you live a normal life and do the same things prior to surgery and radiation? Sorry if these questins are too personal, just trying to feel some hope. Thanks for posting!

  • AWK
    AWK Member Posts: 364 Member
    bob13440 said:

    Jeanette

    Very inspiring words, thank you! Interesting strategy, shaving your head, will discuss that with Lorraine. About a year and a half since you were diagnosed, you seem to be doing great.  How are you feeling these days? Do you live a normal life and do the same things prior to surgery and radiation? Sorry if these questins are too personal, just trying to feel some hope. Thanks for posting!

    That is what we are here for!

    Nothing is too personal in this group.  One thing I have to say is that I have had many amazing and incredible experiences because of my cancer that I wouldn't have had without it.  I can't explain it fully but I have.  From family, friends and strangers to nurses, doctors and other medical professionals.  I enjoy my sunrises and sunsets, my morning walks with my dogs and my time riding horses in a deeper way.  Work is mostly good too although I have to watch my energy and stress levels.  We are always talking about whether or not I should go on leave again (my husband is a proponent.). I really appreciate a good cleansing breath, the big exhale and a good cry too.  This group has been a huge part of this too.  

    My life is different now but more full in many ways and just my new normal.  My husband and I are closer than ever, in a strange way more connected and intimate although there are times I close off a bit too.  I hate seeing his worry and pain.  My motto is stay strong and thrive.  I send her wishes for all of this and you too.

  • It happened to Me
    It happened to Me Member Posts: 206 Member
    bob13440 said:

    Jeanette

    Very inspiring words, thank you! Interesting strategy, shaving your head, will discuss that with Lorraine. About a year and a half since you were diagnosed, you seem to be doing great.  How are you feeling these days? Do you live a normal life and do the same things prior to surgery and radiation? Sorry if these questins are too personal, just trying to feel some hope. Thanks for posting!

    I wanted to be able to control as much as I could and the hair issue was one that I could.  I am feeling good most of the time, really good part of the time and when I get too tired, I pay for it the next 2 - 4 days.  It takes me a while to bounce back.  I live a "new" normal.  I am getting stonger and have more energy than when I was finished my treatments.  I couldn't work, so it took a long time.  LiveStrong at the YMCA has been a huge help.  A free program for cancer survivors and their families that live with them.  It's a 12 week program and it's free.  I do most of the same things.  If I can't do it, then I ask for help.  I've had people shovel snow for me and mow my lawn and rake my leaves.  My goal by the end of last summer was to mow my own lawn and I did it.  I wanted to be able to rake my own leaves this past fall and I did it.  I didn't do either one as quick as I did before, had to split it into more days, but that's ok, I met my goal.  Since my hysterectomy, I was thrown into menopause and I have hot flashes, night sweats, and haven't been able to get to sleep without some assistance, brain fog etc.  I am on meds to tame the hot flashes.  Some women don't get those.  My bowels and urinary tract have changed somewhat.  The neuropathy finally is 95% gone.  The biggest things I can say is:  my new normal includes rest time and I know when I am done, and I'm still not as strong as I was.

    I have learned that my health is way more important than I gave it credit for and am chaning my eating habits.  I'm getting more exercise which is a huge step for me. 

    Feel free to ask questions Bob.  We are here to help you.    I do have a caring bridge site if you want to read my story and what I went through physically, mentally, emotionally, spiritually etc.   I call it the good, bad and disgusting.    www.caringbridge.org/visit/jeanettewhite 

    I stopped worrying about it recurring because I don't know if it will or won't.  I am living each day as normal as I can.

    Blessings Bob and Lorraine.

  • It happened to Me
    It happened to Me Member Posts: 206 Member
    AWK said:

    That is what we are here for!

    Nothing is too personal in this group.  One thing I have to say is that I have had many amazing and incredible experiences because of my cancer that I wouldn't have had without it.  I can't explain it fully but I have.  From family, friends and strangers to nurses, doctors and other medical professionals.  I enjoy my sunrises and sunsets, my morning walks with my dogs and my time riding horses in a deeper way.  Work is mostly good too although I have to watch my energy and stress levels.  We are always talking about whether or not I should go on leave again (my husband is a proponent.). I really appreciate a good cleansing breath, the big exhale and a good cry too.  This group has been a huge part of this too.  

    My life is different now but more full in many ways and just my new normal.  My husband and I are closer than ever, in a strange way more connected and intimate although there are times I close off a bit too.  I hate seeing his worry and pain.  My motto is stay strong and thrive.  I send her wishes for all of this and you too.

    AWK

    I, too, have had many incredible experiences in this journey.  Same as you.  Doctors, nurses, other people in the medical field, family, friends, church family.  Since I am self-employed, I couldn't work and when my savings and checking were exhausted, people sent me checks in the mail, the church paid my mortgage for 4 months in a row.  I applied for food stamps, disability, financial assistance from the hospital.  I was blessed to receive all of them.  I had insurance but had a $5500.00 deductible.  The hospital took care of it and wrote it off.  

    My perspective on people changed.  My attitude changed and my love for people's stories began.  I don't know what other people have been through, so when I see someone in line with food stamps, I don't think, wonder why you don't get a job.  I have a new respect for the state helping people who are hard working people who just need a hand for a while.  I am loving the changing of the seasons and even the cold weather.

    I've decided I have too much stuff and am downsizing in my house.   I'm enjoying life more.  Laughing more out loud. 

    I didn't find this group until 4 months after my chemo. ended.  Wish I would of found it sooner but thankful I found it.  These women are awesome.

    I can honestly say that I am thankful for cancer.  I don't ever want it back.  I am a much better person because of it.  Much poorer financially too, but what's money.  lol     If I never had cancer, I wouldn't have grown as a person and become a much more thankful person that I am now. 

    I try in every situation that I face, to find something to be thankful in.

    I could go on and on but I won't.  :)

  • bob13440
    bob13440 Member Posts: 66

    I wanted to be able to control as much as I could and the hair issue was one that I could.  I am feeling good most of the time, really good part of the time and when I get too tired, I pay for it the next 2 - 4 days.  It takes me a while to bounce back.  I live a "new" normal.  I am getting stonger and have more energy than when I was finished my treatments.  I couldn't work, so it took a long time.  LiveStrong at the YMCA has been a huge help.  A free program for cancer survivors and their families that live with them.  It's a 12 week program and it's free.  I do most of the same things.  If I can't do it, then I ask for help.  I've had people shovel snow for me and mow my lawn and rake my leaves.  My goal by the end of last summer was to mow my own lawn and I did it.  I wanted to be able to rake my own leaves this past fall and I did it.  I didn't do either one as quick as I did before, had to split it into more days, but that's ok, I met my goal.  Since my hysterectomy, I was thrown into menopause and I have hot flashes, night sweats, and haven't been able to get to sleep without some assistance, brain fog etc.  I am on meds to tame the hot flashes.  Some women don't get those.  My bowels and urinary tract have changed somewhat.  The neuropathy finally is 95% gone.  The biggest things I can say is:  my new normal includes rest time and I know when I am done, and I'm still not as strong as I was.

    I have learned that my health is way more important than I gave it credit for and am chaning my eating habits.  I'm getting more exercise which is a huge step for me. 

    Feel free to ask questions Bob.  We are here to help you.    I do have a caring bridge site if you want to read my story and what I went through physically, mentally, emotionally, spiritually etc.   I call it the good, bad and disgusting.    www.caringbridge.org/visit/jeanettewhite 

    I stopped worrying about it recurring because I don't know if it will or won't.  I am living each day as normal as I can.

    Blessings Bob and Lorraine.

    bad day

    I've only been on here for a week and you have all made us feel extemely welcomed. Here's what today's worries and discussion involved, feel free to be upfront and tell me if this is normal or there is a possibility this can happen... "What if during surgery they find the cancer is worse than they originally thought?" "What if surgery is unsuccessful and i don't wake up" These thoughts and questions have consumed most of the day, it's some overwhelming stuff. Is there anything to take comfort in to douse these horribile thoughts? Did any of you think like this? Yesterday was full of positive thoughts and what we're going to do when chemo's over and we hear the word "remission". I have so much respect for all of you, you're all doing well and are so upbeat. We hope to be in your shoes within a few months. I cannot thank you enough for sharing all of your comments, tips and advice.

  • Ro10
    Ro10 Member Posts: 1,561 Member
    bob13440 said:

    bad day

    I've only been on here for a week and you have all made us feel extemely welcomed. Here's what today's worries and discussion involved, feel free to be upfront and tell me if this is normal or there is a possibility this can happen... "What if during surgery they find the cancer is worse than they originally thought?" "What if surgery is unsuccessful and i don't wake up" These thoughts and questions have consumed most of the day, it's some overwhelming stuff. Is there anything to take comfort in to douse these horribile thoughts? Did any of you think like this? Yesterday was full of positive thoughts and what we're going to do when chemo's over and we hear the word "remission". I have so much respect for all of you, you're all doing well and are so upbeat. We hope to be in your shoes within a few months. I cannot thank you enough for sharing all of your comments, tips and advice.

    Bob and Lorraine

    Sorry it is a bad day.  We all know the fear of the unknown.  " Worry will not change the outcome, but it does rob you of enjoying the present.".  Someone told me that, and I have tried to practice it.   We probably all got a " worse" diagnosis than anticipated After surgery.  Because I had no symptoms except an abnormal PAP, both my Gyn and gyn/ onocologist felt the hysterectomy would be all I needed.  So I was totally shocked to find out the day after surgery I would need chemo and radiation.  Later I found out I had Stage 3- C UPSC, a rare and aggressive Cancer.

    I was also told it was not curable,but treatable like a chronic disease.  I had my few days of feeling sad, and then I decided I would fight it with all I have.  I have never expected remission, but enjoy the times I have between treatments, and hope the time between treatments extends longer and longer.  

    I had 18 months between 1st and 2nd rounds of treatment,but only 7 months between 2nd  and 3rd treatments.  They told me it would probably be less than 7 months when I had another recurrence.  But they were wrong.  My last chemo was 5/12.   I did have intense radiation last fall to a lymph node near my trachea.  It did shrink the lymph node, but another lymph node in my abdomen is now growing.  So there will be more chemo in the future.

    I am a retired nurse and have taken care of many many people who had surgery.  All of them came back from surgery.  Have you known someone who did not awaken from surgery?   Is that where your fear comes from?  I am not trying to minimize your fears, because they are real to you.  I am trying to understand why you feel this way.  

    I don't want to discourage you from expressing yourself or asking questions.  I just want to share my experience.   I hope tomorrow is a better day for both of you.   In peace and caring.

     

     

  • bob13440
    bob13440 Member Posts: 66
    Ro10 said:

    Bob and Lorraine

    Sorry it is a bad day.  We all know the fear of the unknown.  " Worry will not change the outcome, but it does rob you of enjoying the present.".  Someone told me that, and I have tried to practice it.   We probably all got a " worse" diagnosis than anticipated After surgery.  Because I had no symptoms except an abnormal PAP, both my Gyn and gyn/ onocologist felt the hysterectomy would be all I needed.  So I was totally shocked to find out the day after surgery I would need chemo and radiation.  Later I found out I had Stage 3- C UPSC, a rare and aggressive Cancer.

    I was also told it was not curable,but treatable like a chronic disease.  I had my few days of feeling sad, and then I decided I would fight it with all I have.  I have never expected remission, but enjoy the times I have between treatments, and hope the time between treatments extends longer and longer.  

    I had 18 months between 1st and 2nd rounds of treatment,but only 7 months between 2nd  and 3rd treatments.  They told me it would probably be less than 7 months when I had another recurrence.  But they were wrong.  My last chemo was 5/12.   I did have intense radiation last fall to a lymph node near my trachea.  It did shrink the lymph node, but another lymph node in my abdomen is now growing.  So there will be more chemo in the future.

    I am a retired nurse and have taken care of many many people who had surgery.  All of them came back from surgery.  Have you known someone who did not awaken from surgery?   Is that where your fear comes from?  I am not trying to minimize your fears, because they are real to you.  I am trying to understand why you feel this way.  

    I don't want to discourage you from expressing yourself or asking questions.  I just want to share my experience.   I hope tomorrow is a better day for both of you.   In peace and caring.

     

     

    Ro

    please do minimize our fears! No, we don't know anyone who didn't come out of surgery, have just heard about complications, that's all. She's going to take all of next week off from work so she can be as rested as possible for surgery. thanks Ro!

  • It happened to Me
    It happened to Me Member Posts: 206 Member
    bob13440 said:

    Ro

    please do minimize our fears! No, we don't know anyone who didn't come out of surgery, have just heard about complications, that's all. She's going to take all of next week off from work so she can be as rested as possible for surgery. thanks Ro!

    My diagnosis was different too.

    My ob/gyn said they thought it was caught early only to find out that it was UPSC (like Ro) and after surgery, we found out it had spread.  I was Staged at IIIa.  I had no lymph node involvement and so far, no recurrences.

    I would encourage you and your wife to have a mindset of "I will wake up from surgery".  My surgery took 5 hours.  My doctor said that he would open me up if he thought that he couldn't see everything.  As it turns out, the robot found a pea sized tumor on the back of my pelvis, it wouldn't of been seen with the naked eye.  Most surgeries I've heard of, haven't had any complications. 

    I would ask the doctor before surgery what kind of surgery will be done.  Will it be da vinci robotic assisted or will you be opened up?  Ask if there will be morcellation done.  Don't let them do the morcellation.  That has been controversial and it involves chopping up the uterus into tiny pieces and possibly allowing the cancer to spread.   Not to scare you, just to advise you.  

    Is Lorraine in good health?