Uterine Papillary Serous Carcinoma (UPSC): any others here???

Teresa 61 said:

Hello Again
This might be long but I'm going to try and start from th beginnig of this.
June 2008 my right side hurt and my back hurt. My hometown Dr. thought I had a sprain as I'm the caregiver of my 34 year old handicapped daughter.He gave me ibupropin800 mg.Three weeks went by, it wasn't really helping so I made an appointment with a gynocologist. Had not been to a gynocologist for over 7 years, not very happy with myself about that. Anyway they gave me an appointment with the gynocologist Sept, 15, 2008 and she did a pap smear and had bloodwork done and a mammogram.Dr called me Sept 22, 2008 said I had abnormal pap smear, atypical precancerous glandular cells and she scheduled a endometrial biopsy for me for Oct 7, 2008. In the mean time I had a vaginal sonogram on Oct 1,2008 that she had ordered on my first visit. It showed that everything was fine except for a thickening of my uterus. Did the Emetrio Biopsy Oct 8 in her office (OUCH!) Dr called me Oct 14 and told me I had endometrial cancer on the lining of my uterus and made an appointment for me with an gyn/oncologist for Nov. 5th. Before that appointment I had more tests, A colonscopy and CT scan of chest abdomen and pelvis. At appointment Nov 5 Dr said every thing would be okay that all the test came back good and the type of cancer I had, Stage 1 Endometrial,was cureable all I would probably need was a hysterectomy. Had my hysterectomy Dec 11, 2008 all went well. I had the da Vinci because I wanted to heal fast so I could continue taking care of my daughter. All was great I felt wonderful , was able to give my daughter a bath 4 days after surgery.
My post op appointment was Dec 22, 2008 and thats when th nightmare began. Dr told me she was so sorry but the pathology test came back with stage 2 endometrial serous cancer, a very aggressive cancer.
I will be having 6 rounds 1 every 3 weeks of chemotherapy starting Jan 2 2009.Then radiation.
carboplatin/taxol. I,m affraid for me but more then that very affraid of the future for my daughter
I know this was long, but hopefuly it will help someone else, Teresa

lindaprocopio said:

intraperitoneal exfoliation
Peggy, I'm so sorry about that fire! Did you lose many gifts? I hope your Christmas was still a happy one. Marge should have had her 3rd chemo round Friday and I will have my 3rd chemo on Monday, the halfway point! I will ask my oncologist Monday about intraperitoneal exfoliation and how they determine if that is an issue.

I looked up intraperitoneal exfoliation because they found microscopic cancer cells floating in the peritoneal wash when they did my initial debulking surgery, and my UPSC was 1st found when a wandering exfoliated cell made its way down to where my PAP test was done. So cancer spread through exfoliation has been a nagging worry in the back of my mind. Hopefully the chemo and radiation will knock out any lingering wandering cells, but I did find some good info (easy to understand) about this topic at the John Hopkins ovarian cancer site and will paste it in BELOW, in case any of us face reoccurance years down the road (remembering that they are discussing OVARIAN CANCER here, but do explain this peritoneal coating):

Intraperitoneal exfoliation -- the majority of ovarian tumors grow outward and project into the abdominal cavity, similar to stalks on a plant. The metastatic or spreading cells are exfoliated (similar to exfoliating skin cells) and get caught in the abdominal cavity and float in the abdominal fluid. The process of ovarian cancer spread is analogous to scattering sand across a table – each of the sand particles gets exposed to every part of the surface of the table. Similarly, each metastatic ovarian cancer cell spreads and sticks to each abdominal organ and grows into small tumors. Intraperitoneal exfoliation tends to occur simultaneously with direct extension;

Peritonectomy: This technique is also called peritoneal stripping. It is based on the fact that everything in the abdominal cavity is lined with peritoneum – a one cell layer thick coating, akin to covering everything in the abdomen with cellophane. Ovarian cancer tends not to penetrate the peritoneum, but spreads along the surface. In a peritonectomy, surgeons peel the “cellophane” or peritoneum off the underlying structure. This does not generally compromise the integrity or immunity of the organs since the peritoneum regenerates itself.

Radical Oopherectomy for Frozen Pelvis: A select group of patients will present with massive local extension of the disease. The tumor will involve the uterus, peritoneum, bladder, sigmoid colon, and rectum and basically obliterates all the normal anatomy for the pelvis. It looks like a bucket of cancer sand was poured into the pelvis. Incisions are made in the peritoneum at cancer sites, and the cancer is peeled away along with all of the attached structures towards the center of the pelvis leaving the blood vessels, ureters, and bladder intact. Because the colon projects into the cavity, it is usually involved in the cancer, and so a portion of the colon may be resected as well and hooked back up to the rectum. The procedure leaves a disease-free pelvic area. In order for your surgeon to deliver chemotherapy directly into your abdomen, you will need to have an intraperitoneal (IP port) placed. This is done either at the time of your initial surgery or within a few weeks after you recover from the initial debulking procedure through a laparoscopic approach. The port is placed in the operating room and the procedure takes approximately 60 minutes. The port is the size of a half dollar and will be placed under the skin, just directly over the bottom of your rib cage, in the left upper quadrant of the abdominal wall. The tubing of the port will be tunneled under the skin of your abdominal wall and placed into the peritoneal cavity through a small hole. The tip of the catheter is placed directly into the pelvis. There are multiple small holes along the catheter tubing that facilitate the delivery of chemotherapy.

Metastatic Disease: hematogenous – this type of metastasis is less common and involves spread to the liver or lung parenchyma cells, which are the cells in the organ itself, as opposed to connective tissue or blood vessels. Lung involvement most often occurs as a pleural effusion, which is a build-up of fluid between two layers of a lining covering the lungs called pleura. As opposed to traveling through the blood system to the lungs, it is believed that these tumor cells spread first by intraperitoneal exfoliation up toward the diaphragm, then they implant on the diaphragm and migrate through the diaphragm to the lymphatics and migrate to the underside of the pleural surface of the lung and create the effusion.

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pjba11 said:

Crying
Well if you cried tonight we are even... because I cried when I read your first post yesterday. My husband saw me on the computer crying and wondered 'what set me off' I said now there is another one of 'us'. He just shakes his head. This is is certainly the journey of and for our life!! Like I have posted in the past. ....... The unknown is perhaps the hardest part at the beginning. I hope you can go over many of our posts, this might help you understand a lot more of the 'routine' things that could help you emotionally and set you up for which questions you need answered to put your stress level at tolerable. Always ask if you need our opinions on what you are unsure of. We may have had that hurdle too. I hope your daughters dad comes through for you also. You need quiet time to unravel and heal. God Bless.

deanna14 said:

Whining allowed!
Hi Linda,
I think you are doing great and I also think you deserve to whine once in a while. My oncologist said don't hold back the emotions, just let them out. I wouldn't worry about it, unless you can't pull yourself out of it. It seems to me that you have a pretty good attitude about it all. My onc put me on an antidepressant right after surgery. I've never been a pill person, but I was (and still am sometimes), having trouble sleeping. He thought the antidepressant might help.
I've had a few weepy days lately. New Years Eve I was fixing my hair and decided I didn't want to lose my hair! I just let the tears flow, in the big picture it's such a little thing. Then yesterday I shed a few when I realized I probably won't be able to go to my granddaughter's 4th birthday party. I am expecting to start chemo the last week of the month or the first week and next. Either way, I probably won't be up for an hour long drive to be around a bunch of 3-4 year olds a week or 2 after chemo.
My next appt. with the onc is on the 12th with chemo teaching on the 19th. Port placement will probably be somewhere in between those 2 appts. Then I will start chemo soon after. I am ready, the sooner I start, the sooner I will be done!
I'm worried that we haven't heard from Marge for a while. I hope she is okay.
You hang in there. In my opinion the sleeping is your body healing! Next week will be better.
Love and hugs. God bless you!

lindaprocopio said:

My CA-125 went WAY UP after my surgery.
My CA-125 'PRE-surgery' was 50, and POST-surgery went up to 190! My chemo oncologist decided that the pre-surgery reading must have been a false one, and that readings too soon after surgery are often wrong, and decided to use my 1st 'pre-chemo bloodwork' CA-125 of 97 as my 'base line' number. My 2nd pre-chemo bloodwork took that number down to the 50's, and my 3rd pre-chemo bloodwork took it down to the 30's. My 1st 2 CA-125's were done at another facility, and most oncologists really only trust their own labs. And sometimes CA-125's are simply not reliable indicators for some people, ever. (Peggy and Deanna can tell you about their experiences with that, and I think Marge also has always had really low CA-125s.

Yes, the "I'm so surprised!" reaction of medical professionals is disheartening. But I really think this cancer is so rare, and that they really are surprised to see this serious cancer in what looks like a healthy woman. All along they predicted for me that it would turn out to be nothing, and then later they were so sure that they caught it really early,...and were 'surprised' when they were wrong.

But you have some WONDERFUL things in your favor! All 20 lymph nodes clean: that's sooooooo good! They found miscroscopic cancer in one of my lymph nodes and that's enough to make me at much greater risk of more distant re-occurance than you are. You can feel pretty secure that your cancer was not yet on the move before your surgery, that they sliced out ALL of your cancer during your surgery and that your body may already be cancer-free. That shouldn't sway you from doing the whole aggressive chemo/radiation treatment schedule (YOU NEED TO DO THIS!), but in your heart, you can think of this as a 'precaution' more than a treatment.

The 'hamster days' for me are a reaction to the 15 steroids I take right before chemo that jazz me up to the sky. They make me aggressive when I talk, chatting incessently and interrupting people to get my ideas across, spouting out opinions I would ordinarily keep to myself, almost obnoxious, (although when I apologize people always say "No No; we found you charming", etc., but I can hear myself.) And I can't sleep. And then a couple days later, I crash and I'm a tired version of my normal self. And 4 or 5 days after chemo, Marge and I both experience some joint aches, mild nausea and changes in how food tastes. That only lasts a couple of days also. The week in the middle BETWEEN chemos, you should feel pretty good, but will be most vulnerable to infections and need to be super-careful who you come in contact with. I bought surgical masks, and wear them during that 'vulnerable week' if I go to a crowded place and to have handy in case anyone visits me that is sick. I always buy a new toothbrush and use antibacterial wipes and sprays and I don't take tub baths, and I eat yogurt daily to help re-balance my digestive bacterias. Then the week BEFORE your next chemo you should feel almost your old self, as your counts rise and your body recovers. I plan all my family times, lunches out with friends and business appointments for that week-before-chemo, and try and have a sleepover with the grandkids to catch up. You will fall into a routine pretty quickly, and can fairly accurately predict when you'll be dealing with side effects. Each chemo round it gets a little bit harder but just a little bit. But it's all do-able, and lots of people work straight through their entire treatments and you'd never know they were sick. I pray that it will be that way for you. And DEANNA, you just may be able to make that birthday party!

You've had a lot to take in the last couple of weeks. Having cancer is HUGE, and the idea is still so NEW for you. And I admit that I did worry that ALL of the information and shared worries and all that we have posted on this Discussion Board would be overwhelming for you all at once. I well remember that my nights of hardest crying were the first nights after researching my own disease; knowing the possibilities and facing my mortality was terrifying. That haunting terror will go away, Teresa. Hope will replace it. Determination will replace it. And even Acceptance fits into how you will deal with all of this. I think we all have to go through the stages of grieving for ourselves: the denial, followed by the depression, followed by the anger and then we come out on the other side determined, hopeful, and accepting. MOST of the time! Some days better than others. ((((Teresa)))))