Hello everyone - My wife was just diagnosed - UPSC

lindaprocopio said:

(((Doug))) I hope you are getting some sleep right now,...
but I am replying before I go up and try to sleep myself, just in case. A night of internet searching on 'UPSC' is a dark and terrifying night and yet we all do it when we first hear those words. I remember crying SO hard, SOOOO hard. Let me tell you this RIGHT NOW: do not waste your time or tears on anything you read that is older than 1 or 2 years. UPSC was only a named cancer in the 80s and it is so rare that until very recently they treated it like all other uterine cancers and so women DIED from it. But now they know better. So don't make yourself crazy with old stats and old life expectancies, etc.

You are at the right place. This is bar-none the BEST real-time Discussion Board on the web for UPSC. The women here with UPSC are from around the world; and we have a lot of avid amateur researchers that post the latest on clinical trials and new chemo-drug therapies, etc. We take each others questions to our individual oncologists and share these 'virtual free 2nd opinions' when we get them for our friends here. We will do that for you.

Truly the surgery is the worst part of the whole thing and once your wife recovers from that, she's conquered the worst of it. The Chemo and radiation are very do-able, no walk in the park, but I was able to work full-time, and make love to my husband, and go out to dinner and LIVE all during my chemo. For now your wife needs to concentrate JUST on recovering from her surgery. As much as it hurts (and it will!), she needs to get up and WALK tomorrow. If she can, she needs to take as few pain and nausea meds as she can (within reason) so that her internal organs can start to re-awaken. I suggest that she not eat solid food yet and instead just drink lots and lots of fluids until her digeestion awakens from all the manipulation each organ went through as they lifted and examined each one for cancer during her surgery. For a few days she may do best just drinking glass after glass of warm water or green tea with nothing in it. That's all I could keep down, but talk to her doctor and take his advice. You want to get her discharged from the hospital as soon as you can because hospitals have their own special types of infections, but she will have to have bowel function before she can go home. So she has to walk and hydrate.

One more "NOW" thing to ask the oncologist immediately. You need her pathology report, in writing. This will help so much as you make treatment decisions, and you can now consider yourself a member of her treatment team as an advocate. Because she still has FRESH tissue from he surgery, you should see if you can get additional tissue assays done NOW before they start chemo. You want the tissue tested for more than just the typical pathology report and may have to have the hospital send the tissue away to a special lab. It would be wonderful if the cancer cells could be tested for EFGR, HER2, stuff like that where there are new targeted chemo drugs that can be added to the chemo cocktail if these factors are a part of her cells. I didn't have that done (didn't know to fight for assays then) and wish I had because my cancer came back later after I thought I had it gone for good. If I have any 'second look' surgery, I will insist on this even if I have to pay for it myself, so that I will know what it takes to kill my cancer this time.

You can read my profile by clicking on my name, but in short, I was diagnosed with Stage IIIc UPSC in September 2008, and had my surgery in early October 2008, did 6 rounds of carbo/taxol, 28 rounds of IMRT external pelvic radiation, & 3 internal brachtherapy radiations, and was in remission 5 months after all that before my cancer returned. But my recurrance is not typical! Many (MOST!) of our UPSC Sisters at Stage III are STILL in remission over a year after their initial treatment protocol! And we have women who have posted here with UPSC who are 3 year, 5 year, amd even an 8 year UPSC survivor posted here! So please do not despair!

I encourage you to scroll down and read the really LONG original thread entitled "Uterine Papillary Serous Carcinoma (UPSC): any others here???" It will load INCREDIBLY slowly as it is LONG, so go get yourself a soda or some tea while it loads. This thread was the original 4 UPSC sisters, the only ones posting before they gave us our own Discussion Board here. 3 of us were just out of our surgery, like your wife. It will take you through the early months of our treatments and prepare you for what is coming up, as we all posted almost daily. I think you will be comforted by it. Think of it like a good book written especially for you and what you are going through. You may have to read it over several days, but I think your wife will like knowing that a community waits for her here when she is feeling better.

(((Hugs))). Now I am going to try and sleep. I had chemo today and the steroids they give me with it make me feel WONDERFUL but full of artificial energy and make me sleepless one full night. We call it 'hampster days' here. (You'll soon have a whole new vocabulary; cancer has its own language.) I don't even fight the sleeplessness. I catch up on the work I missed while I was getting chemo and I play on the computer! But forgive the typos.

djinco said:

Thank you
Thank you to everyone here.

I just got home from the hospital this evening. Betty is putting on a good face about the pain, but she is in pain. She is not using the button as much as the nurses think she needs to; I know my wife, she does not want to be dependent on morphine (or whatever is in there?).

We walked two trips up and down the hallway - maybe 100 yards and she was really tired. They gave her a suppository at 6:00pm and nothing yet. I got her all back in the bed, hooked up her leg inflators, got the call button and the phone set within reach and said goodnight.

We were pretty devastated yesterday; today we are ready for the fight. We know that the fight is long and hard, but as Betty says, she is not ready to die.

I asked about radiation. The Dr says no, chemo in an aggressive manner first.

Linda asked about the home setup. I know kind of odd, but when we had our house built in 1997, we purposely designed a one level ranch for all living for when we get old.

One day, one hour, one minute at a time. That's our new mantra.

Doug in Colorado

Northwoodsgirl said:

Betty and Doug
I am so very sorry to hear that you are fighting cancer. I too had cancer-uterine, adenoendometrial 2B diagnosed in May 2009. You are fortunate to have gotten to this wonderful discussion board so early in your journey. Know that there are many others who care and will help you to navigate the experiences yet to come.

Some Tips (helpful I hope): Betty wear warm up pants or some pants that have elastic in the waist on the trip home. The swelling in your abdomen will go down with time. Also you may want to wear a slip over your head or button up the front sweatshirt as you likely will have abdominal swelling and may not be able to get your bra hooked. For shoes wear slip ons if possible but may be tough with winter. Accept that someone needs to help you put on your pants for a while and elastic is your friend!

Have Doug bring a pillow from home up to the hospital so that you have a pillow to splint your abdomen when you WALK out of the hospital. You will also want to place the pillow between you and the seatbelt when you are in the car.

Doug: Drive very carefully as every bump is painful when you are recovering from surgery. Dodge all potholes!
Betty: Take a pain pill 30 minutes before you leave the hospital also make sure you have taken anti-emetic (anti-nausea medication). Also, take some of the mesh net panties (usually in the bathroom) home with you and also the premoistened bath cloths as they can be used at home for personal hygiene.

Take a shower in the hospital as soon as you can. Day 2 post op.

Doug: Get a basket or plastic storage container about the size of a shoe box to keep and organize all medication at home.
May want to keep meds most often taken-pain pills and stool softner-on nightstand next to bed. Always have fresh water on night stand so you don't need to get up to take pain pills. Also take home with you the blue plastic bag emesis (nausea/vomiting bag) Keep this bag in the car for a few weeks. Also, if you take home the beige/gold wash basin from the hospital this also can serve as place to "heave" if needed or store meds at home.

Betty: When people say "call me if you need anything" just know that you probably won't so have someone else tell your friends and family what you need. Also there are some great CDs that you can buy online that are specific for people fighting cancer---they help you when you can't sleep. They are great to listen to (healthjourneys.com) I like the ones by Bellaruth Naprastek. They cost about $18. These were recommended to me by the hospital. I listened to them every night as part of my therapy (body, mind and spirit).

Doug: Buy some chocolate and vanilla BOOST protein drink and keep it cold in the fridge. This drink has some good nutrients and protein which the body needs to heal properly.

Doug: Have ready at home foods that are easy on the stomach---mac and cheese, mashed potatoes, chicken noodle soup, whole wheat toast with butter or what every Betty thinks she might be able to tolerate. Betty you will likely have lost a fair amount of weight from the surgery and recovery but know that the weight will return once you feel better and the decadron (steroid) used with chemo will cause you to gain a little weight again.

Betty will likely sleep a lot when she gets home as that is what her body needs to heal. Fresh sheets or just a fresh pillow case is wonderful!
Drink lots of water and keep taking the stool softners/laxitives as the pain meds are very constipating.
Betty may decide to sleep on the opposite side of the bed than usual because it is easier for her to get up on one side versus another. Keep using the pillow to splint abdomen when getting out of bed. She will need your help to get out of bed for a while.

I read somewhere that people newly diagnosed with cancer spend about 3 months thinking and trying to deal with the possiblity of their own mortality. (I sure did!) Those thoughts lessen with time.
There will be lots of tears---Betty just lost all of her hormones so went abruptly through menopause plus dealing the the cancer diagnosis and major abdominal surgery.
Maybe too many tips but thought I would share them. Every small bit of information has the potential to be helpful and ease the transition from hospital to home.
Try to stay in the present moment and don't live your life looking too far back or ahead of where you are. You are in my prayers!
Lori