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Hello everyone - My wife was just diagnosed - UPSC

djinco's picture
djinco
Posts: 87
Joined: Feb 2010

Hello. I understand that most users of this specific board is female, so please allow me to post until my wife is able.

My wife of 30 years, Betty, went into the hospital this morning because an ultrasound found some masses on her ovaries. She has been feeling abdomen pain for about a month and went to our Dr in mid-January. The Dr ordered an ultrasound. It took a week to get the ultrasound read and we met with the GYN Oncologist on Jan 19th and surgery was today.

I knew that it was not good when the scheduled 2 hour surgery turned into 3 1/2 hrs before the surgeon came out. The doctor came into the waiting room at 1:20PM and told me that Betty has uterine papillary serous carcinoma (UPSC). He classifies it as Stage IIIB—The tumor was in both ovaries, and deposits of cancer are present in the abdomen that are large enough for the surgeon to see but not exceeding 2 cm in diameter. The cancer has not spread to the lymph nodes.

He took off two tumors larger than softballs – maybe a couple of pounds each. The tumors had spread to her abdomen and he thinks he got the tumors before they reached the lymph nodes.

The Dr told me that Betty will have to undergo chemo in about 3 weeks.

We are both very scared and I am very upset reading the possible outcomes. My wife Betty, is 49 years old.

I am home alone, searching the internet while my wife is at the hospital. This is the first time that she has been in a hospital overnight since her tonsils were removed in 1966.

The hospital has wi-fi and I will be there by her side every day until she comes home (hopefully Thursday). Her Mother is coming from Virginia on Thursday to help us.

I am still in shock. I just don't know what to do. I spoke with the Dr for 5 minutes in the waiting room. The nurses are not a lot of help - they see cancer every day. Of course right now my wife is in a lot of pain from the removal of her ovaries, uterus, and cervix. I hope that the pain and confusion will go away - right now we are really scared.

I will read this board tonight, and we can talk about all of this tomorrow at the hospital; so if anyone can tell us what to expect, please do.

Thank you, Doug in Colorado

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Doug, I was diagnosed in Oct/surgery IIIC Figo stage II endometrial cancer. Been through radiation, chemo, and a total hysterectomy. I feel great and am doing quite well. The treatment was daunting and I got through it by taking one day, even one hour at a time.
I am being treated by wonderful staff at M D Anderson Cancer Center in Houston. There is lots of hope Doug. Many people beat this thing. That is what I am planning on doing. When I get afraid, I remind myself. I am not dead yet. Tomorrow may be shakey but I have today and I am going to make the best of it. That is what helps me cope.

Another tip, is surround yourself with positive people. Be realistic, but positive. It makes things better. Look for the good in all things. It is there. I promise.

I think my sweet husband suffers more than I do. He has been a rock. Please take the time to take care of yourself. Eat properly, get some rest, and find the time to relax. And time to laugh. I know it sounds strange but, the things that helped me the most was laughing with my friends that have battled cancer in the past. You will need your strength to help Betty, so take care of Doug.

Let us know how things are going. And we will be looking for Betty when she feels like writing.
Norma

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Doug, So very sorry to hear about Betty. So very glad you found this site. The journey is long and you will be weary. But in the long run it is very do-able. Linda pretty well covered how it really is. She is a GOD SEND to all of us UPSC sisters. I was diagnosed UPSC had all of the 'traditional' treatments much the same as Linda. Mine started in 2006. There is hope and there is a good life after UPSC!! Please let Betty know that we are here for her. You are both in my prayers.

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

I too am a UPSC sister, stage IIA diagnosed in Oct. 08... Linda is a GOD SEND like Peggy said. You have lots of info and friends here on this site and we all will be here for you. You are both in my prayers.

MIND, BODY AND SOUL!

Hugs,

Marge

djinco's picture
djinco
Posts: 87
Joined: Feb 2010

Thank you everyone. I just got up and checked the e-mail and this board.

Linda, you were right. I searched the internet and it was really bad. I found this site by seeing Linda's original post in 2008 and she said to go to the uterine section.

Betty sounds much better today - not so groggy from the medicine. She is on a liquid diet today - but she is happy for that because she is hungry.

I am on my way to the hospital ASAP, so I'll be sure to let Betty read your words of support.

Thanks everyone - we'll be checking in later, Doug

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

(((Betty)). The steroids they gave you during your surgery are probably making you feel HUNGRY; I sure know they do that for me when I get them with my chemo. I made the mistake in the hospital of eating all of the food they brought me even though I'd read a book on hysterectomies that said you should only have ice chips until you have bowel function. I threw up everything the first time I tried to stand, and THAT HURTS! So, please go easy on the food; you'll be glad you had restraint. I gained 15 pounds while I was getting chemo, and I know a lot of the 'girls' gain even more, and that's the steroids firing up that appetite. But chemo is no time to diet, but just realize it's the drugs and the hunger isn't real.

You need to try and get up and walk today. If there isn't a 'walking rail', make sure someone is holding your arm solidly, and pace yourself. Don't go far! But keep at it. You probably still have a lot of anesthetic in you, and when those wear off, it really does HURT, I won't lie. They offer me an epidural for the day AFTER my surgery, which I turned down, but that should give Doug some idea of what kind of pain you are in, so make sure he babies you! I remember comparing it to a bear knawing on my guts. I remember telling my sister that this is what hell must be like. But I'd never had surgery before, and I had projectile vomiting from the morphine drip (a reaction I also got from my take-home Percosets), so I was SHOCKED at the pain. But it does get better, each day it lessens. You need to get up and walk because soon taking a poop will be the entire focus of your being and you have to move around so your body wakes up inside. You want to take lots of stool softeners (ask your doctor about this; but not laxitives if the stool softeners work) and drink that SunSweet Plum Juice (so much tastier than prune juice and just as effective) so you won't be too afraid to go with all those staples (or did you have the Da Vinci surgery??). It'll get better: I promise you. But it is hard.

Do you have stairs at home to your bedroom or bathroom? I got myself discharged after 2 nights and was able to slowly get up my stairs. But I know lots of women rent a hospital bed for the first week or so. My husband was home with me and is strong enough that he supported my weight as I sat up in bed and we practiced swinging my legs around at the hospital under the nurse's instruction. Think about what car you will use to come home as you will be one sore kitten and need a car you can get into (no high-up SUV step!) and one where the seat pushes way back and lays back if it is a trip longer than a few miles.

Once you get passed the surgery healing, the worst is over. Don't think about the chemo yet, but I promise you it is easier than what you are going through right now. Just get through these next hard weeks. REST! SLEEP away as much of this as you can. An get up and walk so that gas works out of you. Once the gas is gone MUCH of the pain is gone, so you have real motivation to walk and get your innards woken back up! ((((Huge hugs)))). You will both be in my prayers. You can do this. Soon you will get your Game Face on and be ready to battle this beast and win!

djinco's picture
djinco
Posts: 87
Joined: Feb 2010

Thank you Linda. You provided some great insight. Betty has been walking around - doing well up and down the hall. Twice today.

I was thinking about the trip home; and what you said, yes the Tahoe would be a bit of a stretch, so I'll bring Betty's car to pick her up.

I can tell when Betty is tired and she is now after setting up all day. Now she's back in bed. Maybe after dinner she'll take a couple more walks.

Doug

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Betty I am sorry to hear about your pathology report. Sorry you need to go on this journey. Glad you are recovering from your surgery. As Linda has said, each day will get a little better. Linda gave you lots of good advice to help your recovery. Know that we are here to answer any questions you may have. Take care and know that you are both in my prayers. In peace and caring.

djinco's picture
djinco
Posts: 87
Joined: Feb 2010

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

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

{{{DOUG AND BETTY}}}
My thoughts and prayers are with you guys. Not much to add, Linda gave some great advice.
I can remember taking a shower was the high point of my stay in the hospital. It was difficult but, made me feel better.

I felt the same way about the pain killers. Hated pressing the button. But, finally gave myself permission to be needful of help. It made it easier to get up and walk, take a shower, etc.

Keep fighting!! Norma

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Doug and Betty, Thank you for keeping us updated! I like your new mantra: "One day, one hour, one minute at a time".. That keeps you focused on what is important at the moment.
Glad to hear that Betty is getting ready to fight this thing. And with a wonderful supportive husband like you, Doug.....THE TWO OF YOU CAN DO IT!!

Thinking of you!!

Karen

Kaleena's picture
Kaleena
Posts: 997
Joined: Nov 2009

Hello Doug:

First of all, I hope you and Betty are doing well. After the shock wears off, you two will get back on your feet.

I am 49 years old now. Back in 2005 I had a complete hysterectomy at age 45 and it wasn't until a week later that I found out that there was cancer so therefore I had to endure another abdominal surgery for staging, apendectomy, etc. Like Linda said, the surgery is really the tougher part. (I would also request a port - it is an outpatient surgery but will help in the long run if chemo is required)(I still have mine in).

I want to tell you both that during my treatment and stuff like that that my husband and I have gotten to spend so much quality time together because he goes to almost all of my appointments and treatments. We laugh about the fact that it is so ironic that the radio plays "sad" songs (or it might be we just notice it more).

Do not let any negative energy in. Always stay positive. We would actually be laughing and joking during my chemo infusions.

We also have three teenage boys. During my first ordeal they didn't even realize that I was being treated. However, once again I am going for surgery to remove a small tumor that doesn't show up as cancer in the many scans that I have had. Its a three hour or so surgery and a 3-5 day hospital stay.

Your wife will probably have CT Scans, and/or PET Scans. Please never feel like you can't ask questions. If you are not sure, even get a second opinion. Follow your instincts.

I will keep you two in my prayers. Hoping for a speedy recovery!

Kathy
From Pennsylvania

djinco's picture
djinco
Posts: 87
Joined: Feb 2010

I departed the hospital about 8:30PM and then last night at 11:45PM I had just turned off the light and the phone rang. It was the nurse. Betty was confused and didn't know where she was or what had happened.

At first I was afraid that she had a mini-stroke. I talked to her for a few minutes explaining her surgery etc... and she was still asking "Why?"

So I got back up to the hospital in what seemed like record speed, and she was just so confused. She could remember some things from the day, like walking and dinner, but just didn't know what was what.

I stayed with her overnight and I helped her walk about 4:00AM. I gave her a sponge bath and kind of washed her hair since it was bugging her. She was hungry so the nurses gave her some skim milk abut 4:45AM.

I got her back in bed and the nurse cam in and said that they could take it from there. I went home about 5:00AM.

This morning she sounds good, but I don't know if she is trying too hard to sound up, and not resting enough. I am wondering if the morphine made her confused. The nurses didn't seem to be too concerned.

Thanks, Doug

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I get projectile vomiting from strong painkillers like morphine or percosets, so I had to tough out my post-surgery pain pretty much without drugs. So I have no real experience, although the slightest seditive makes me unconscious so I can imagine myself confused like that in a similar situation. But I would be insisting on talking to her oncologist or anetheseologist (sp??) to have her meds reviewed, even if I had to get forceful about it. It is understandable that your wife could be confused with the stress she is under and the surgery anesthetics still in her body topped off with whatever else they are giving her. But I'd take this higher than a nurse (and I LOVE nurses!) that level of confusion isn't typical, especially after she had such an alert functioning day. You have to be a squeaky wheel in a hospital to get them to call the doctor in, but this sounds like a situation where someone needs to review her meds and examine her. (((Doug)))). Please let us know how she's doing. I hope you get an uneventful night tonight.

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Your wife can be confused from the meds or combination of meds she is on. The doctors and nurses know which meds are likely to cause cognitive changes (confusion).
Other things can cause confusion or hallucinations including if some lab value is off in her blood.
Most likely it is from the morphine or pain meds she is on in combination with anasthesia that is working its way out of her system.
She is very fortunate to have you by her side to help reorient her to a strange environment. My Mom had a similiar experience after her hysterctomy for cancer...but she knew that she was getting paranoid and called my brother ( the chief of police ) to come to the hospital because she just knew those people were "out to get her!"

Northwoodsgirl
Posts: 201
Joined: Oct 2009

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

culka's picture
culka
Posts: 158
Joined: Oct 2009

don't forget to buy GAS-X, very helpful

It is sad, but welcome here.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Doug,

Sending healing thoughts to Betty. I too went thru this at 49....

My surgical experience was better than most as I had the Robotic Surgery, so my recovery
was pretty quick.

One day at a time is a great mantra!

Laurie

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