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

shortmarge said:

Thanksgiving was Great
Linda, My hair started coming out in hand fulls on Saturday and yesterday. It's very, very thin and my head itches like crazy. I'm ready to take hair clippers and shave the rest off! I glad to hear you had some fun!!!! I'm waiting for my time. Go for Chemo again on Friday but see the doctor first. See what she has to say cause my six weeks of healing is Thursday.

Deanna, Congratulations and may God Bless you with many, many, happy years of marriage.

lindaprocopio said:

A happy bride! Wonderful!
I'm so glad that the wedding was all that you wanted it to be, Deanna! And so glad that your external radiation is just about over. Going there day after day never lets you forget that you have cancer. With the long breaks between the chemo treatments, there are actually times when you can forget for a little bit. Very restful.

My head feels SORE. I washed it soooo gently tonight and am trying to hardly touch my head, hoping to get a few more days before it starts coming out in clumps. Right now I'm just shedding if I scratch my head, but I know this it's gonna start coming out BIG TIME by next Monday when I have my 2nd chemo treatment. I'm trying to not let it bother me. I'm pretty vain, but I'm trying not to be.

Do any of you know anything about the lymph nodes that run down the inside of your thighs? I have some tender spots down the inside of my thighs that have me a tiny bit concerned. I wouldn't connect this at all with the cancer if the radiologist hadn't examined my legs with such care when I saw him, something I didn't think to ask why. Anyone know anything about these lymph nodes? I was going to wait until next Monday's chemo to ask my oncologist, but if anyone knows of any connection at all, I won't wait and will give him a call. Thanks!

pjba11 said:

Hello all
Happy MRS. to you Deanna. Congrats to you and your husband. Well Linda; Glad to see you are getting your normal life back and enjoying your relationship again. Your symptoms sound very normal to me. Your 'color' after your first time will probably be expected each time now. .... Especially after the brachy. You also said your head was sore, I remember mine feeling like I had a layer of crushed glass between my skin and my scalp. I had to use a donut pillow for a few days to sleep, but it went away. I had a nice soft cap to sleep in because my head got cold!! Also the lymp pain is still with me. Not nearly like it was just after my first hospital stay. Marge, you are still hanging tough. Hope your itching stops. This step of hair loss is not easy. We all want to think/act like it is nothing,,,, but for a day or so it may get very emotional for you and your husbands. I know I was angry that cancer had one more thing to control in my life. But soon hats and wigs are more fun than doing hair each day. Now when I have to do my hair each day I actually miss the convenience!! I am so glad all of you are here together for support. Have you noticed how different we all are/were and how much more the same we are now!?

pjba11 said:

You are welcome!!
I hope I can answer your questions about what I experienced with bachy. I did not have to douche. I did not have discharge. Through out all of my treatments I had sex when we wanted to. I had a mind set that I would be as normal as I could for what ever time we had left. When I went for my brachy simulation they had told me that I would have a marker in my vagina, and a enema of barium to better see the areas around all of my intestines and bladder. When they actually did the simulation they did not do either of these because they could see everything they needed to go around on the x rays. I never had to have any internal exams from any of my radiologists. Only my gynocologist. My brachy was interesting. My first time on the table just as the machine started to pump one of the techs came back into my room and said that they had just taken my husband from the waiting room and took him to emergency because they thought that he had had a stroke. I had to lay there listening to this machine pump this poison into me while my husband was going through this!! As soon as I was dressed I flew downstairs and found him sitting in bed drinking juice. It was not more than a bad virus that caused him to get dizzy and sick. Thank God!! As if this was not enough... the second time that I am on this same table for my 2nd brachy the tech comes in and asks me to call my daughter (9) at school (165 miles away at home) the tech went to my purse to get my cell phone... my little girl says 'mom, I think my arm is broke. I fell on the sidewalk by the school at recess. Can I get an x ray?' So I call my friend who I had asked to be in charge of my daughter to take her to the hosp. Next call from my daughter. "how is your arm." she said "the cast is blue" She had 4 casts total before we got through that fall!! On my third trip to brachy which is 165 miles from home I started to throw up about 20 minutes from the hospital. I had a terrible flu. Since I very very seldom get sick this was horrible!! So Deanna I hope you have better luck than I did!! The procedure itself is nothing to worry about. I felt pressure and pinching, mostly because I was so sore from the earlier radiation sessions. They will also give you dialators for later if you need them. We have the rest of our lives to deal with the damage. I felt that the chemo was a breeze compared to the after effects of radiation. But once again. We are all different. My life is good and I thank God many times a day for the privledge of my treatments!! You are much younger than I am and more than likely you will be able to bounce back a lot quicker. Nothing about my brachy was painful. Do not even give it a second thought. Just go get done and come home healthy!!!

wje630 said:

Using Dilators During Treatment
Hi There:

I am new to this forum and I was trying to do a search on anyone having problems from their pelvic area radiation and I came across your post.

I was diagnosed with Anal cancer in February of 2005 after having a growth removed. My surgeon thought it was just some sort of polyp and I had thought it was just some kind of hemmorhoid? Anyway, when my surgeon called me and told me it was cancer, he was as surprised as I was.

Although it was Stage II, the chemo radiologist thought I could forego the chemo and just do the radiation so that is what we did. I had 7 weeks, 5 days a week. They did the tatoos on both my back end and my pelvic front because he said that the lymph nodes are so close in that area. There is not much area betweem where the anal growth was and the wall of the vaginal area. I'm not using the exact medical terms of course, but hopefully you will get the idea. Because of radiation in the pelvic area, after about 3 weeks, I got really red and raw both in the front and the rear. They gave me creams to help, but truthfully they did not help much. I was also experiencing loose stools and so I was a pretty sore lady. They told me to just wear some men's boxers and loose clothing, like sweat pants.

The reason I am telling you all of this is that my radiation onocologist did not prescribe for me the dilators to use during my treatment. I didn't realize how much difference there was in my vaginal opening until after I had healed from all the soreness. I was told it was scar tissue that had formed from the treatments. When I did mention that when my fiance and I tried to have sex, it was so painful I could hardly stand it. After a few months with no relief, I went to my gynocologist and she suggested surgery to remove the scar tissue. THAT was not a good idea...my radiation doctor said I should have waited until I was completly healed which would have been about 2 or more years. Oh well, the damage had been done by that time. My radiologtist had suggested I have sex several times a week or I could just use a dildo if I wanted. Unfortunately, it was still painful even after the surgery.

I am using vaginal estrogen tablets and I just now bought a set of dilators I found at a site on the internet. Needless to say, it has been 3 years since I finished my treatments and all the CAT scans I have had since then have been clear. Although I am so grateful for
that, I am still sad about how much my relationship has suffered because of the changes.

You mentioned you wanted to head off any sort of problem, well if I had to do it all again(God forbid) I would use the dilators all during my treatment. It may be too painful at some point, but the idea is to keep your self pliable and not let it have a chance to grow any scar tissue. Hope this isn't too graphic or too much info, but I have been trying to find someone out there who could relate to my problem and let me know if eventually the dialators will work even after all this time.

Good luck to you on your treatments, you are lucky to have your husband be so supportive.

lindaprocopio said:

I'm doing really really good!
If my hair wasn't falling out, I could almost forget I have cancer; I feel that good. My step-mother drove up to see me today and brought some great take-out Thai food from her favorite restaurant. After she left, I accepted an appointment tomorrow for lunch with a state official from the PA Dept. of Conservation & Natural Resources, to talk about a grant for one of my clients. (Let's hope he doesn't get too much of my drifting hairs in his food! HA!) Then I picked up my grandkids and took them to McDonald's and then let them play at my house awhile to give their parents a break. Then I put in a couple hours of computer work catching up with my staff. Deanna, the week before chemo is GREAT because your body has fully recovered from the last treatment by then. I think you'll like chemo a lot more than the radiation. But you don't make the radiation seem that scary either, and I thank you SO much for that! The grandkids helped me put my (artificial) Christmas tree up, and I've done all of my Christmas shopping already online, so I'm feeling unusually content. Who knew cancer could be like this?? I know there could be some bad days ahead, but don't you agree that this cancer thing is really do-able? Compared to how you imagined it would be when you got your diagnosis??