CSN Login
Members Online: 6

You are here

lost

bob13440's picture
bob13440
Posts: 66
Joined: Jan 2015

My wife was diagnosed with ovarian and uterine cancer Tuesday night. This was very unexpected and has crushed us. She's having surgey to remove both organs next month. We're worried about pulling through the surgery and the chemo treatments that follow. Dr says if all goes well, life expectancyis 1-4 years, that seems like a pretty big gap. Can anyone shed any more light on this? Maybe someone out there has been through this or has/had a loved one who went through it. Any feedback is much appreciatted. 

AWK
Posts: 364
Joined: Mar 2013

Hugs to you and your wife.  In Feb 2013 I was diagnosed originally via an emergency room visit that turned into a four day hospital stay.  they found two tumors, one softball sized in my uterus and one walnut sized on my right ovary.  I had the radical hysterectomy plus ovaries, tubes, cervix and all pelvic lymph nodes removed during my surgery.  My uterine muscle was 81 percent invaded by cancer, my cervix had cancer plus three pelvic lymph nodes all spread out and one on my para aortic artery.  I was diagnosed stage IIIC uterine papillary serous carcinoma (UPSC) Post surgery, second opinion had me at IVA.  It was, and continues to be scary.  after all I have been through the time between initial diagnosis and surgery was the most stressful.  I had six rounds of chemo, 28 of topical radiation and 3 brachytherapy.  Sounds terrible but actually I got through it all pretty well.  And I have to say I have had many many amazing experiences because of my cancer.  I am focused on living fully and moving forward.  I continue with treatments to this day due to progression and metastic tumors but I feel well, work full time and have treatments every three weeks.  My doctors remind me that I am a statistic of one.  I have never asked about the prognosis but my husband has.  She can do this and you can too.  A great resource for information is www.nih.gov/NCI.  

I am the type of person who needs information and really researched my doctors, hospitals everything.  I have been lucky to have amazing care and really incredible support.  I think my journey has been harder on my husband than me in many ways.  But he is doing well and we are moving forward.  Keeping both of you in My prayers and sending her wishes that she can stay strong and thrive.  What a lucky lady to have you.  Keep reaching out here, you will find many amazing stories, ideas and much support.

Anne

bob13440's picture
bob13440
Posts: 66
Joined: Jan 2015

AWK, your reply is very appreciatted and inspiring. We're worried about the surgery. We trust the doctors, but it's such a major operation. Do you remember how long the actual surgery was and how you felt right after? Thanks for the prayers, advice and kind words, but I am definitely the lucky one in this relationship. I have no doubt she will fight this like the champ she is. Cancer picked a fight with the wrong person! Good luck to you and your husband with your battle.

AWK
Posts: 364
Joined: Mar 2013

I think mine ran about four hours for the actual surgery.  I had a bikini cut due to the size of the tumors and the spreading my doctor removed the uterus, ovaries and tubes intact as he wanted to contain the cancer as much as possible and preserve as much tissue intaxt as he could for future needs.  (This turned out to be great as I continued my journey and they needed tissue for genome testing last fall.)  I was taken into surgery at 11 and woke up in recovery at six.  The first 24 hours were heavily medicated.  I started to feel a lot of pain the next evening and it took the nurses a little while to get the pain meds settled in so I didn't have peaks and valleys of pain.  I ended up in the hospital for six days, mostly because I have very low blood pressure normally and it got a little too low a few times.  The other reason was the team was divided on whether or not they should start chemo internally right away because of the UPSC.  they got me up and walking the night of my surgery and I walked quite a bit while in the hospital.  When I got home I walked upstairs  all by myself and got around pretty well.  the first few days I slept in a recliner, then in our bed and put pillows around me for my drain and to keep me aware if I started to roll over.  I walked every day, then twice a day.  The first week was the worsT but each day I got better by leaps and bounds.  Within two weeks he took out my drain and to celebrate I went out to lunch with my friends.  She will bounce back quickly I am sure.  

We stocked up on Philiips Milk of Magnesia for post surgery and that was great.  Green tea, mint tea too. I had a lot of yogurt smoothies, soups, potatoes and ginger ale.  Anything to stay hydrated and keep potassium levels up plus proteins.  I lost a tone of weight and muscle tone after the surgery.  They were focused on my putting weight back in for chemo and radiation.  I ate the same way all through chemo too.  Bring a pillow to the hospital for the car ride home, it will protect her incision and abdomen.  I used that pillow up until the drain came out For sitting, coughing and laughing.  We tend to laugh a lot in my house.  Even then.

does that help?   

bob13440's picture
bob13440
Posts: 66
Joined: Jan 2015

heck yes that helped! Hearing about how someone else went through this is giving us hope and a form of guidance. Thank you for the thorough details and the tip on the pillow and diet you used. It's refreshing to know there are such kind, supportive people out there. Thanks again AWK!

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

Hi Bob

sorry to hear about your wife's situation.   However with you by her side she will be able to do this.   I had two major surgeries within a month.  a total hysterectomy wherein they removed the ovaries uterus one ten and appendix plus many lymph nodes.   does your wife gave two separate cancers or one type.   I have endometrial in my uterus and on my ovary.   They treated as ovarian.   

Mthe main thing with the surgery (if they are doing it traditionally and not Davinci) is to make sure dhe drinks water and walks around.   The pain meds can give her constipation.   The quicker she can get her bowels going the quicker she can leave the hospital.  Usually 3 days.  Even when she feels better she shouldn't over do it lifting wise.   The first chemo of choice is carboplatin and taxol.  She will probably be given some meds to take the day before treatment.   she may get very tired several days after treatment.  Aldo she may have a port placed.  I had one in for six years and only used it for six months.  

My best to you and your wife

Kathy

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

Hi Bob, So sorry that you and your wife have started this fight, but this is a great place to get advice and share your fears. I was diagnosed in Oct 2013 with UPSC and had my surgery 12/05/13. I had a complete hysterectomy with removal of all my lady parts.  Mine was an open surgery not the DaVinci. I was in surgery about 6 hours. When I first was taken to my room, I was pretty out of it and heavily sedated. They had me hooked up to a morphine pump and I don't remember feeling a lot of pain that first day. As I didn't come out of surgery and recovery til around 6PM, they didn't make me get up until the next morning. Getting out of bed was not fun! I stayed in the hospital for 6 days and by the time I went home I was feeling a lot stronger. I walked quite a bit while I was in the hospital and was able to get around by myself. I was still in pain when I went home, but, in retrospect I realize that I was more in fear of pain. I kept taking the pain killer( oxicodone) and they made me feel nauseous all the time. As a result, I spent most of the next 2 weeks in bed or in the recliner. I finally realized that I did not really need this much medication and cut back to just taking it before bed. I gradually began to feel better and began eating more nutritious meals. I soon started to regain my strength ( and my appetite!).

i was diagnosed with both uterine and cervical cancer, UPSC stage 2 grade 3. It has been 7 months since I finished chemo and internal radiation. So far everything is great. No evidence of cancer on my last 2 quarterly exams, my hair is growing back and I feel great! Surgery is scary and so is chemo and radiation, but they are doable. No one knows for sure if cancer will reoccur, not even your doctor but if you start reading some of the threads on this board you will see that many of our members have survived and flourished for many years after diagnosis.

Sandy

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Welcome to this site.  Feel free to come back with any questions or fears you may have.  We all know the fear of the unknown of what is ahead.  We all know how scary it is to hear that Cancer word.

As far as the surgery, I had the DaVinci Robotic surgery. My surgery was 6 hours long.  They removed the uterus, ovaries, tubes and 25 lymph nodes.  5 of the nodes were positive and I had positive cells in the abdominal wash.  I was diagnosed with UPSC stage 3- C.

i was told that the Cancer was not curable, but treatable...like a chronic disease.  So that is what I have been doing for the last 6 years.  I have had chemo 3 different times.  I recently had intense radiation (SBRT) to a lymph node close to my trachea.  I know I will need chemo again,but it has been since 5/12 when I finished my last chemo.  I am currently taking Aromasin which slows the Cancer growth.

I don't know how they can give you a life expectancy before your wife has had her surgery and really know what stage she is.  Everyone responds differently to the treatment.  As many will say we are all a statistic of one.  I would advise you not to read things on the Internet.  Most of it is old statistics, and is very scary.  They have made a lot of advances in treatment of cancer and the side effects of chemo.  Reading posts from this discussion group will give you information on current treatments.

Remember to take care of yourself, too.  You will need your strength to help support your wife.  Take it a day at a time, and try to find some joy in each day.  You and your wife will be added to my prayers.  In peace and caring.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Bob,

There isn't much I can add to what the other ladies have already said. I had the Davinci robotic surgery  and was in the hospital over night. Going into the surgery, my uterine biopsy indicated that I had a grade 2 cancer; not so! It was only after the surgery and we received the pathology report that I learned the truth. Staging occurs from what the doctor discovers during surgery and from the pathology report. I don 't know how your doctor can predict your wife 's survival beforehand. Hopefully, surgery and the path report will show a low stage and grade. My uterine cancer metastasized to my ovary and to the outside of my ovary. I had a positive wash. I had 6 rounds of carbo /taxol ending in March, 2014. No radiation. So far I am NED. Is a gynecologic oncologist doing the surgery?

Warm regards to you both,

Cathy

 

 

bob13440's picture
bob13440
Posts: 66
Joined: Jan 2015

evry word that all of you have posted is so appreciated! This has lifted our spirits. You all seem to be doing great and your spirit is definitely rubbing off. I'm very interested to ask the Dr tomorrow (she has to have some fluids drained from her lungs) about the initial 1-4 expectancy. She's having some discomfort breathing right now and the growth in her stomach seems to get bigger every day, we just want to get through the surgery so she can get rid of that and start to recover before chemo.

As I read all of these comments, I have to pause and dry my eyes, it makes me very emotional to hear such encouragment from people I've never met. Saying thank you to all of you doesn't feel strong enough , but, thank you, thank you, thank you so verymuch and keep on fighting.

AWK
Posts: 364
Joined: Mar 2013

There is strength in numbers.  These ladies have really carried me through good and bad days.  Keeping you both in my prayers.

Hopeful162's picture
Hopeful162
Posts: 82
Joined: Sep 2014

Bob, I have been reading on these boards for several months now (though not chiming in very often) and I also feel as though I have come to know some of these ladies through their constant upbeat comments, and you are right, it is so encouraging to hear what they have to say. I have just finished round three of chemo, carbol/taxol for USPC (original stage 1A, grade 3), and feel so much more confident now than when getting that initial biopsy diagnosis with its dire predictions of my future!

For my surgery I had everything removed via DaVinci, including 13 lymph nodes, part of my omentum and a pelvic wash. Surgery took about 3-4 hours and I stayed overnight in the hospital with a catheter, but was walking the next morning. Once home I only took iBuprofen and was not too uncomfortable. I took a laxative as I had trouble with BMs for the next three days (like none), and I was told up front, "nothing in the vagina," including bath water, and no lifting over ten pounds for eight weeks, which I followed.

For me, chemo has about four bad days every three weeks, but no nausea, so I am getting through it. Having no hair anywhere has been interesting and not particularly disturbing to me. So, I am sure your wife will get through this and be able to look back on it all as simply a change in the usual routine of life. For all of us, we would be smart to live each day given us to the best we are able.

bob13440's picture
bob13440
Posts: 66
Joined: Jan 2015

Cathy,Yes, a gynecologic oncologist is doing the surgery. Does this mean something that we should be worried or take comfort in?

ConnieSW's picture
ConnieSW
Posts: 1456
Joined: Jun 2012

Take comfort in.

bob13440's picture
bob13440
Posts: 66
Joined: Jan 2015

thanks for the feedback Connie.

They drained six liters of fluid from her today which has really helped her breathing. I don't like that there was that much in her, but at least she's more comfortable. The first step of a very long journey, but we're ready to fight our butts off! Thanks again everyone and continued success in your battles.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

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

bob13440's picture
bob13440
Posts: 66
Joined: Jan 2015

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

pinky104
Posts: 574
Joined: Feb 2013

I just want to know that I am a survivor of stage IVb uterine cancer (uterine papillary serous carcinoma, a very aggressive cancer).  At first my gynecological oncologist thought I had ovarian cancer, but he went before a tumor board of doctors and the joint decision was made that it started out in the uterus.  I had metastases to both ovaries, the omentum (the fatty layer in the abdomen), and the small intestine.   I am 4 years and 7 months out from my surgery.  I had a suspicious mass found last year in my paracolic gutter (in the back) but the doctor says it hasn't grown, so he no longer thinks it's cancer (it could be a fluid collection from having had lymph nodes removed).  

My surgery was long (5 or 6 hours) but I also had my gallbladder and appendix taken out by another surgeon during my cancer surgery, as gallstones had shown up in the CT scan I had before surgery.  I was in the hospital for 6 days as I couldn't get my bowel function back. It may have had something to do with the horrible hospital food that I had to force myself to eat.  I couldn't get much of it down.  

All I had was 6 rounds of chemo (Carboplatin and Paclitaxel ("Taxol")).  I didn't have any radiation because they would have had to do it on too large an area.

Tell your wife not to give up--there are survivors out here.  It's a long journey.  The surgery was pretty uncomfortable.  The chemo for me wasn't too bad.  I never got nausea or vomiting because I was given a drug called Emend before each round of chemo, and through the first days of it.  I did get very short of breath and needed tranfusions (two units two days after surgery due to blood loss and one in the middle of my chemo treatments due to chemo induced anemia).  I refused the Neulasta shot they give during chemo because it had a risk of heart attacks.  My younger brother had unexpectedly died of a heart attack in the week just before they asked me to have the shot.

I'm probably healthier now than I've been in a long time.  

Good luck to you and your wife, and we'll pray for her.     

bob13440's picture
bob13440
Posts: 66
Joined: Jan 2015

what a wonderfil story! Not thinking it's cancer anymore is nothing short of a miracle! They told us she has uterine and ovarian cancer and won't know what else it has attacked until after surgery, it's really scary. Reading all of these comments to her has given both of us so much hope. We feel veryconnected to all of you.

AWK
Posts: 364
Joined: Mar 2013

Keeping you both in our prayers.  All of my favorite ladies have weighed in on this chain so you are in great hands.  If the surgery yields even more than expected, don't worry.  Many of us had unexpected news after our surgeries and are doing well.  I have metatasis and progression, am still in treatment and working, riding horses and living with this now 24 months after initial diagnosis.  Take it one day at a time and we are here for both of you.  Hugs and prayers.  Anne 

bob13440's picture
bob13440
Posts: 66
Joined: Jan 2015

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.

AWK
Posts: 364
Joined: Mar 2013

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

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

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

bob13440's picture
bob13440
Posts: 66
Joined: Jan 2015

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's picture
Abbycat2
Posts: 644
Joined: Feb 2014

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's picture
bob13440
Posts: 66
Joined: Jan 2015

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
Posts: 145
Joined: Sep 2009

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's picture
bob13440
Posts: 66
Joined: Jan 2015

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

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

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's picture
bob13440
Posts: 66
Joined: Jan 2015

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

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

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's picture
Abbycat2
Posts: 644
Joined: Feb 2014

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

 

Fayard's picture
Fayard
Posts: 436
Joined: May 2011







Normal
0




false
false
false

EN-US
X-NONE
X-NONE

























DefSemiHidden="true" DefQFormat="false" DefPriority="99"
LatentStyleCount="267">
UnhideWhenUsed="false" QFormat="true" Name="Normal"/>
UnhideWhenUsed="false" QFormat="true" Name="heading 1"/>


















UnhideWhenUsed="false" QFormat="true" Name="Title"/>

UnhideWhenUsed="false" QFormat="true" Name="Subtitle"/>
UnhideWhenUsed="false" QFormat="true" Name="Strong"/>
UnhideWhenUsed="false" QFormat="true" Name="Emphasis"/>
UnhideWhenUsed="false" Name="Table Grid"/>

UnhideWhenUsed="false" QFormat="true" Name="No Spacing"/>
UnhideWhenUsed="false" Name="Light Shading"/>
UnhideWhenUsed="false" Name="Light List"/>
UnhideWhenUsed="false" Name="Light Grid"/>
UnhideWhenUsed="false" Name="Medium Shading 1"/>
UnhideWhenUsed="false" Name="Medium Shading 2"/>
UnhideWhenUsed="false" Name="Medium List 1"/>
UnhideWhenUsed="false" Name="Medium List 2"/>
UnhideWhenUsed="false" Name="Medium Grid 1"/>
UnhideWhenUsed="false" Name="Medium Grid 2"/>
UnhideWhenUsed="false" Name="Medium Grid 3"/>
UnhideWhenUsed="false" Name="Dark List"/>
UnhideWhenUsed="false" Name="Colorful Shading"/>
UnhideWhenUsed="false" Name="Colorful List"/>
UnhideWhenUsed="false" Name="Colorful Grid"/>
UnhideWhenUsed="false" Name="Light Shading Accent 1"/>
UnhideWhenUsed="false" Name="Light List Accent 1"/>
UnhideWhenUsed="false" Name="Light Grid Accent 1"/>
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 1"/>
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 1"/>
UnhideWhenUsed="false" Name="Medium List 1 Accent 1"/>

UnhideWhenUsed="false" QFormat="true" Name="List Paragraph"/>
UnhideWhenUsed="false" QFormat="true" Name="Quote"/>
UnhideWhenUsed="false" QFormat="true" Name="Intense Quote"/>
UnhideWhenUsed="false" Name="Medium List 2 Accent 1"/>
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 1"/>
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 1"/>
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 1"/>
UnhideWhenUsed="false" Name="Dark List Accent 1"/>
UnhideWhenUsed="false" Name="Colorful Shading Accent 1"/>
UnhideWhenUsed="false" Name="Colorful List Accent 1"/>
UnhideWhenUsed="false" Name="Colorful Grid Accent 1"/>
UnhideWhenUsed="false" Name="Light Shading Accent 2"/>
UnhideWhenUsed="false" Name="Light List Accent 2"/>
UnhideWhenUsed="false" Name="Light Grid Accent 2"/>
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 2"/>
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 2"/>
UnhideWhenUsed="false" Name="Medium List 1 Accent 2"/>
UnhideWhenUsed="false" Name="Medium List 2 Accent 2"/>
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 2"/>
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 2"/>
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 2"/>
UnhideWhenUsed="false" Name="Dark List Accent 2"/>
UnhideWhenUsed="false" Name="Colorful Shading Accent 2"/>
UnhideWhenUsed="false" Name="Colorful List Accent 2"/>
UnhideWhenUsed="false" Name="Colorful Grid Accent 2"/>
UnhideWhenUsed="false" Name="Light Shading Accent 3"/>
UnhideWhenUsed="false" Name="Light List Accent 3"/>
UnhideWhenUsed="false" Name="Light Grid Accent 3"/>
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 3"/>
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 3"/>
UnhideWhenUsed="false" Name="Medium List 1 Accent 3"/>
UnhideWhenUsed="false" Name="Medium List 2 Accent 3"/>
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 3"/>
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 3"/>
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 3"/>
UnhideWhenUsed="false" Name="Dark List Accent 3"/>
UnhideWhenUsed="false" Name="Colorful Shading Accent 3"/>
UnhideWhenUsed="false" Name="Colorful List Accent 3"/>
UnhideWhenUsed="false" Name="Colorful Grid Accent 3"/>
UnhideWhenUsed="false" Name="Light Shading Accent 4"/>
UnhideWhenUsed="false" Name="Light List Accent 4"/>
UnhideWhenUsed="false" Name="Light Grid Accent 4"/>
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 4"/>
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 4"/>
UnhideWhenUsed="false" Name="Medium List 1 Accent 4"/>
UnhideWhenUsed="false" Name="Medium List 2 Accent 4"/>
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 4"/>
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 4"/>
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 4"/>
UnhideWhenUsed="false" Name="Dark List Accent 4"/>
UnhideWhenUsed="false" Name="Colorful Shading Accent 4"/>
UnhideWhenUsed="false" Name="Colorful List Accent 4"/>
UnhideWhenUsed="false" Name="Colorful Grid Accent 4"/>
UnhideWhenUsed="false" Name="Light Shading Accent 5"/>
UnhideWhenUsed="false" Name="Light List Accent 5"/>
UnhideWhenUsed="false" Name="Light Grid Accent 5"/>
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 5"/>
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 5"/>
UnhideWhenUsed="false" Name="Medium List 1 Accent 5"/>
UnhideWhenUsed="false" Name="Medium List 2 Accent 5"/>
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 5"/>
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 5"/>
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 5"/>
UnhideWhenUsed="false" Name="Dark List Accent 5"/>
UnhideWhenUsed="false" Name="Colorful Shading Accent 5"/>
UnhideWhenUsed="false" Name="Colorful List Accent 5"/>
UnhideWhenUsed="false" Name="Colorful Grid Accent 5"/>
UnhideWhenUsed="false" Name="Light Shading Accent 6"/>
UnhideWhenUsed="false" Name="Light List Accent 6"/>
UnhideWhenUsed="false" Name="Light Grid Accent 6"/>
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 6"/>
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 6"/>
UnhideWhenUsed="false" Name="Medium List 1 Accent 6"/>
UnhideWhenUsed="false" Name="Medium List 2 Accent 6"/>
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 6"/>
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 6"/>
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 6"/>
UnhideWhenUsed="false" Name="Dark List Accent 6"/>
UnhideWhenUsed="false" Name="Colorful Shading Accent 6"/>
UnhideWhenUsed="false" Name="Colorful List Accent 6"/>
UnhideWhenUsed="false" Name="Colorful Grid Accent 6"/>
UnhideWhenUsed="false" QFormat="true" Name="Subtle Emphasis"/>
UnhideWhenUsed="false" QFormat="true" Name="Intense Emphasis"/>
UnhideWhenUsed="false" QFormat="true" Name="Subtle Reference"/>
UnhideWhenUsed="false" QFormat="true" Name="Intense Reference"/>
UnhideWhenUsed="false" QFormat="true" Name="Book Title"/>



/* Style Definitions */ table.MsoNormalTable {mso-style-name:"Table Normal"; mso-tstyle-rowband-size:0; mso-tstyle-colband-size:0; mso-style-noshow:yes; mso-style-priority:99; mso-style-parent:""; mso-padding-alt:0in 5.4pt 0in 5.4pt; mso-para-margin-top:0in; mso-para-margin-right:0in; mso-para-margin-bottom:10.0pt; mso-para-margin-left:0in; line-height:115%; mso-pagination:widow-orphan; font-size:11.0pt; font-family:"Calibri","sans-serif"; mso-ascii-font-family:Calibri; mso-ascii-theme-font:minor-latin; mso-hansi-font-family:Calibri; mso-hansi-theme-font:minor-latin;}

I agree with Ro regarding the kind of chemo your wife will receive before having surgery.

I had stage 2, adenocarcinoma grade 3 (aggressive cancer cell). I had 18 treatments of chemo total in 6 months.

Even though I did not have radiation, this was an aggressive treatment. For the most part, everyone type of cancer cell and stages have different treatments.

I will keep you, wife and family in my prayers. Stay positive and take one day at a time. You have seen for yourself in this board the many wonderful and strong women who had and still are fighting their battles, so your wife can do it too! Laughing

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

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's picture
bob13440
Posts: 66
Joined: Jan 2015

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
Posts: 364
Joined: Mar 2013

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's picture
It happened to Me
Posts: 206
Joined: Apr 2014

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.  :)

It happened to Me's picture
It happened to Me
Posts: 206
Joined: Apr 2014

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.

bob13440's picture
bob13440
Posts: 66
Joined: Jan 2015

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's picture
Ro10
Posts: 1579
Joined: Jan 2009

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's picture
bob13440
Posts: 66
Joined: Jan 2015

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's picture
It happened to Me
Posts: 206
Joined: Apr 2014

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?

 

bob13440's picture
bob13440
Posts: 66
Joined: Jan 2015

until now, she's been in vey good health. She used to run a lot and as recent as last year was running a 5K race. This was so unexpected (not to say most are), life was so regular and then,BOOM. Guess we're still in some kind of shock. Thanks for the advice, we will definitley mention the kind of surgery.

AWK
Posts: 364
Joined: Mar 2013

My surgical outcome also caught everyone off guard.  The extent of the Mets they found, involvement of the cervix on top of the uterus and right ovary, and the type which was/is UPSC.  My gyno/oncologist spent a fair amount of time with us while I was in the hospital as did the doctor who became my radiation oncologist, my now palliative care physician and my hemo/oncologist.  To this day I am still in treatment, two years later.  I was 50 and very healthy at diagnosis.  But I feel like I am like that toy from the 60s - a Weeble.  I wobble but I don't fall down no matter what the news is.  No matter what.  Just remember to take deep breaths, stay busy and try not to look too far ahead in the future, take things one day, one event at a time.  It really helps.  

Write down your questions for your doctors as they come up.  I have a notebook we call Big Green.  I made it up with a friend in the days leading up to surgery with different sections that I add to to this day; one for my questions, one for medications, one for work and disability, one for doctors etc.  It helped me feel like I had some control and that it wasn't so overwhelming. My husband could grab it and use it if needed etc.  

You guys will get though, the earliest days were the worst.  And I have had some bad news along the way but the unknown in the beginning was stressful.  

Hang tough.  Anne

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Ro mentioned that most of us got a worse diagnosis following our surgery based on the pathology report.  My uterine biopsy indicated that I had a papillary type cancer, grade  2. Well , I found out that I had papillary serous carcinoma which is always a grade 3- the most aggressive.  I also found out that it was metastatic as it had spread to my left ovary and to the outside of the ovary. I had a positive wash.  I don 't know if my cancer will return or not and I have no control over it . In the meantime, I am living life as fully as I can.  I have always been athletic and vibrantly healthy .  For many years I ran and swam, too. I didn't think I 'd get cancer.  I read that UPSC tends to affect African American women who are thin and have had children. Other than being slender, the other characteristics do not apply to me. There is just no rhyme or reason why this happens to any of us.

 I am wishing you peace during this time,

Cathy

 

AWK
Posts: 364
Joined: Mar 2013

i keep thinking about your trip to the Galapagos Islands and hopefully Alaska too!  You always inspire me as do the other ladies here, especially Ro and Helen.   All of you remind me we have many things ahead of us.  Bob and Lorraine - you do too.  Hugs.  Anne

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

you know Cathy, I've read that also and I find it so strange that there are few, if any, African American women on this site. I was 67 when diagnosed. I am not and was not slim or African American. I have had three children and was in good health at the time of diagnosis. While many here are slim, many of us are or were overweight. Some have had children and some have not. I wonder how they gather these statistics. Well, as Jazzy always said, we are all a statistic of one!  Sandy

AWK
Posts: 364
Joined: Mar 2013

Not slim but not obese, more like average.  Healthy.  Never had children, 50 at diagnosis and had not gone thourgh menopause.  The pathologist underlined my active follicles found in my surgery In her report confirming the UPSC.  Rarefied strata we ladies are in.  I think about the minorities who may have  a propensity for this but aren't aware of the risks and about how do we get the word out in those communities.  I realize I am lucky with the access to care that I have but I missed the run up to my diagnosis.  My doctors think I was probably symptomatic for roughly six months prior to diagnosis.  

Still undergoing treatment and still thriving!

bob13440's picture
bob13440
Posts: 66
Joined: Jan 2015

it was better, thanks for inquiring. Here's what my concern is- right after her diagnosis, they checked her lungs to see if it had spread to them, thankfully they were clear. They told us if had spread there, it would be a matter of weeks. Her coughing has become worse and it scares the heck out of me to think maybe it has spread to he rlungs since initial exam. We're going back tomorrow for more blood work, i will them my concerns then. I really am sorry for bringing such dark thoughts to this positive message board. All of your comments have been so inspiring and it has been theraputic. I really do feel better after leaving this board.

 

So thankful I found you ladies

AWK
Posts: 364
Joined: Mar 2013

I feel badly that the doctors are putting timelines on this for you.  My doctors haven't done that at all and we just focused on getting through this and livIng fully.  One of my closest Chemosabes had her stage ivb ovarian found when she was admitted to the hospital for what they thought was pneumonia In Jan 2013.  She is now NED after much treatment and two surgeries.  She had ascites in the lungs when diagnosed.  She is doing well and we push and pull each other along on our journeys.  I have five inoperable and irradiatable Mets all spread out including one in my pericardial sac adjacent to my heart.  I told the doctors that I knew I could do this and needed them to either believe in that or find a replacement.  They believe in my fight and tell me I am a statistic of one.  I am doing well and lving fully.  That was in March of 2014 at my first three month checkup.  We have never looked back. My advice, recognizing it is unsolicited, is that you two decide what you want to do, how you want to do it and demand the proper support and consensus you need to make that happen.   You guys make the decisions and the team is there to educate and treat.   Stay strong.  

AWK
Posts: 364
Joined: Mar 2013

Bob and Lorraine, I have been keeping you both in my prayers and hoping your path is getting more clarity.  Sending you both positive energy and more prayers.  Anne

Pages

Subscribe to Comments for "lost"