lost

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 said:

thank you so much

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.

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?   

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

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.

bob13440 said:

Everyone

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.

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 said:

Abbycat2

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

Take comfort in.

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.