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

pjba11 said:

pelvic vs brachy
Hi you two.... congrats from me also. I feel like the old timer here, but I will sure let you know my opinion. If your Dr tells you something different please follow that first!! I was not given details of the dialators until during/after the brachy .... I was told it is accumulative (spelled wrong!) in other words it is ongoing for the rest of our lives. The dialators I got had instructions that I did not need to use them until my brachy had healed. When I started my brachy my external radiation was almost healed. They were so careful not to do pelvics etc because I was so 'fresh' from the external beam radiation. There will always be time to use the dialator. It is my opinion to heal completely internally before you do much with your dialator. The walls of the vagina are so thin from no estrogen ( our surgery) plus our radiation that we can bleed and get infections so very easy. Our immune systems are hit hard right now. (can you beleive I ate mostly peanut butter during my external radiation and the peanut butter I was eating just happened to be the recalled jars that were contaminated with salmonella. So I had all of the salmonella side effects plus radiation side effects at once. Nasty!!) Please be sure that your type of UPSC cancer does not 'react' to estrogen if any of your general practioners recommends any of the estrogen creams. Some medical Doctors don't realize that most of our UPSC should not use additional estrogen for any lurking cells to feed on. Many thought that the estrogen from plants would help.. last I heard even that was not good. If either of you know more on this please post it.

Thanks!
Good evening ladies,
Yes, he is a great guy! I am very lucky to have him.
I saw the doctor today, so I asked about the dilators. As you were saying, he told me the dilators would come after the radiation. You explained it much better than he did. I was thinking that the no sex restriction was because the top of my vagina wasn't healed the last time they checked me which was after my first rad tx. He told me that day that he wouldn't check me again until the end of radiation. I thought it was due to the top of the vagina not being healed and that would cause increased risk of infection. Now I am seeing it from a different perspective, I wasn't even thinking about how vulnerable the vagina is from the treatments. Thank you for sharing your experience, that clears a lot up for me.
I also talked to him today about the estrogen issues, hot flashes and what I could do to relieve them without estrogen. I had bought some soy milk because milk tends to upset my stomach further. He said to check the carton for "phyto" estrogens (plant estrogens). Also that there are some "natural" treatments, but to always be sure that they do not contain these phyto estrogens as they are just as detrimental as chemical estrogens. So this is the same info you received.

shortmarge said:

Here's My Story
I wasn't feeling well, kind of tired and peeing non stop and had pain on my right side. I have had colon problems in the past and cyst on my right ovary in the past so I wasn't sure where the pain was coming from. My mother had colon cancer so that has always been a big concern for me. Well my regular Dr. sent me for a CT scan. They found that I had a deflating cyst on my right ovary (the pain); a fibroid on my left and the uterine lining was a little thick so she sent me to the OB/GYN. The OB set me up for an internal ultrasound. After that was done he said that the my ovaries and tubes looked great but there in was some thickening in my lining and a small fibroid and looked me straight in the eye and said that it was not an OB/GYN problem. I persisted and asked him if it was normal for me to have my periods 18 days, 20 days or God only knows how many days apart. Was it my age? He said no that my period should be getting further apart not closer so he decided to do a biopsy which showed that I had Uterine Papillary Serous Carcinoma. So much for not being an OB/GYN problem.....

Like you Linda, I had the same surgery. The preliminary pathology came back as no more cancer; it seemed that when he did the biopsy he got the one and only tumor. Well, I went to the oncologist yesterday and found out that they found a second cancer, clear cell carcinoma and that it had slightly penetrated my cervix. She told me she had many discussions with the pathologist about what stage of cancer it was. She felt it was 1B but the pathologist won and they are calling Stage IIA.

I will be having Chemo and radiation (vaginal cuff radiation). I start chemo on Friday.

I am not afraid, I'm just really angry. I cry more out of anger and when my husband starts crying. I have a lot to live for, my daughter graduates from high school this year, I have three older sons and two beautiful grandsons.

As of now I am cancer free and I plan on staying that way!!!!

PJ is there a way that you can send that information on the supplement? I read that a lack of iodine causes a lot of female and male reproductive cancers.

Linda to add a person to your buddy list there is a little person icon next to their name, just click on it.

I send hugs to all that are going through this and will be here for you!

Chemo Friday
I suspect you will be having a busy and long night tonight. My prayers are with you. Many things will be new tomorrow. Chemo is not that bad, especially after the 'unknowns' of the first session. More than likely they will have you watch a introductory movie about all of it. I hope you find something that you feel like eating ready tonigt for tomorrow after chomo when you get home. It helps if you start with no cooking or even cooking oders in the house. I felt like eating things I really didn't care for before cancer. I had the best luck with homemade chickensoup with dumplings. The dumplings were bland. Then the next thing I felt like eating would be mayo or mustard. This was something I can't say I gave much thought to eat before chemo. (very strange) Many people find their taste buds really change. I also went through a day when I COULD NOT eat. I hit PANIC thinking here we go, now I will never get well if I CAN'T eat. It only lasted a day. Take things slowly. After your first session things will be easier to sort out. If I can help you in any way please let me know. Let that Chemo BLAST you clean!! God bless and heal in Jesus name.

pjba11 said:

Chemo Friday
I suspect you will be having a busy and long night tonight. My prayers are with you. Many things will be new tomorrow. Chemo is not that bad, especially after the 'unknowns' of the first session. More than likely they will have you watch a introductory movie about all of it. I hope you find something that you feel like eating ready tonigt for tomorrow after chomo when you get home. It helps if you start with no cooking or even cooking oders in the house. I felt like eating things I really didn't care for before cancer. I had the best luck with homemade chickensoup with dumplings. The dumplings were bland. Then the next thing I felt like eating would be mayo or mustard. This was something I can't say I gave much thought to eat before chemo. (very strange) Many people find their taste buds really change. I also went through a day when I COULD NOT eat. I hit PANIC thinking here we go, now I will never get well if I CAN'T eat. It only lasted a day. Take things slowly. After your first session things will be easier to sort out. If I can help you in any way please let me know. Let that Chemo BLAST you clean!! God bless and heal in Jesus name.

A Little Nervous
Thank you for all the info pj. I was feeling really angry and worried about being sick. I am finally getting around from the surgery and the thought of being knocked on my **** again was making me mad. You have given me reassurance and made me feel relaxed and ready to get started. I feel so blessed that I have found all of you. God Bless.

pjba11 said:

astro
D 14, Sounds like a product to try. Thanks !! I was also told that if we suspect any type of vaginal infection or change we should have our husbands use condoms until we heal. Less invasive infection. When we are in chemo we are so vulnerable. We are not supposed to eat fruit with peelings, handle things like potatoes or anything with soil/germs on it. It is very odd to think like that. Mouth sores are another big topic. Do you have specific concerns?

chemo side effects
First I was wondering if you were restriced from sex through the entire radiation period? If so, when did they allow you to resume? I would prefer using condoms over abstinence! Don't you need that to heal emotionally/mentally?
I'm just a little nervous about what to expect from chemo. You hear a lot of horror stories, see movies, etc. that make it sound/look as if you feel like dying. How did you feel? I've heard a little about the mouth sores, the doctor said I would lose my hair probably by the end of the first week of the first cycle from the Taxol. I'm not sure what other drugs they are going to use. How about the nausea/vomiting? I've read some blogs about people ending up back at the hospital for IV fluids from getting so dehydrated. Do you feel sick like staying in bed all the time?
I guess if you wouldn't mind sharing with me how you responded to the chemo. That would give me something to start digesting and preparing myself for. Do they use a lot of steriod, and do you get bloated up from them? Did you/do you have any peripheral neuropathy?

deanna14 said:

chemo side effects
First I was wondering if you were restriced from sex through the entire radiation period? If so, when did they allow you to resume? I would prefer using condoms over abstinence! Don't you need that to heal emotionally/mentally?
I'm just a little nervous about what to expect from chemo. You hear a lot of horror stories, see movies, etc. that make it sound/look as if you feel like dying. How did you feel? I've heard a little about the mouth sores, the doctor said I would lose my hair probably by the end of the first week of the first cycle from the Taxol. I'm not sure what other drugs they are going to use. How about the nausea/vomiting? I've read some blogs about people ending up back at the hospital for IV fluids from getting so dehydrated. Do you feel sick like staying in bed all the time?
I guess if you wouldn't mind sharing with me how you responded to the chemo. That would give me something to start digesting and preparing myself for. Do they use a lot of steriod, and do you get bloated up from them? Did you/do you have any peripheral neuropathy?

can't remember ever
I am sitting here wondering how to answer your restriction questions. I can not remember them telling me I was restricted. (other than too darn sore from the surgery.) I know I waited a bit after the internal radiation. Just have to be a bit cautious. You may be surprised how most of this is not even going to change your daily routine. I can tell you that I only had one off day during my entire chemo. I wasn't sick, (thank God and my Dr for aloxi ) but I COULD NOT eat. Really hard to explain that unless you experience it. I think maybe God wanted me to have that experience to gain compassion for others if I can help them somehow. I was never dehydrated. I did 'push' myself during radiation and chemo to drink fluids. I also required that they give me extra fluids with my chemo drugs. I felt as long as they were doing an IV they may as well do it right! I learned REAL fast that when you are sitting in chemo.... start early for the rest room, it takes awhile to get your machine pushed in to the room with you and also takes awhile to get 'situated' once you are in there. As far as a port ... I think you are wise to go with a port if you have tough veins. I did not have a port. I had easy veins and even then some of the times they had to start over 3 times to get the IV working. I did sit and cry one whole session ( I didn't hurt in any way except emotionally).... Sometimes the drugs change your emotions quickly. I also had a very tough case of RLS that session. Most of the time I had friends along and we played cards. It is not difficult. I did not have a lot of nerve tingles or damage. Most of my damage is from the radiation . I have a herniated disc, and lots of aches and pains from just plain getting old!! Your Dr will write your prescription for your chemo according to your life style and your history. Your will have the drugs for your cancer, but the Dr decides how strong to order your nausea meds and your steroids. He may ask you how many hours you normally try to sleep, how many hours you work etc. They usually send your prescription to their pharmacy to custom mix this for you after you get there for each session. I had my first chemo the day after Thanksgiving and I lost my hair just before Christmas 2006. I went 16 months before I could style my hair with my hot rollers. Like I said in one of my earlier comments, I felt totally energized after chemo. The thing that knocked me down was the neulasta shot that I had to have 24 hours later. Not everyone reacts to that either. If you have questions please ask. Like I told Linda... I WILL WALK WITH YOU ON THIS JOURNEY AS FAR AND AS LONG AS YOU NEED ME . I have you in my prayers.

pjba11 said:

can't remember ever
I am sitting here wondering how to answer your restriction questions. I can not remember them telling me I was restricted. (other than too darn sore from the surgery.) I know I waited a bit after the internal radiation. Just have to be a bit cautious. You may be surprised how most of this is not even going to change your daily routine. I can tell you that I only had one off day during my entire chemo. I wasn't sick, (thank God and my Dr for aloxi ) but I COULD NOT eat. Really hard to explain that unless you experience it. I think maybe God wanted me to have that experience to gain compassion for others if I can help them somehow. I was never dehydrated. I did 'push' myself during radiation and chemo to drink fluids. I also required that they give me extra fluids with my chemo drugs. I felt as long as they were doing an IV they may as well do it right! I learned REAL fast that when you are sitting in chemo.... start early for the rest room, it takes awhile to get your machine pushed in to the room with you and also takes awhile to get 'situated' once you are in there. As far as a port ... I think you are wise to go with a port if you have tough veins. I did not have a port. I had easy veins and even then some of the times they had to start over 3 times to get the IV working. I did sit and cry one whole session ( I didn't hurt in any way except emotionally).... Sometimes the drugs change your emotions quickly. I also had a very tough case of RLS that session. Most of the time I had friends along and we played cards. It is not difficult. I did not have a lot of nerve tingles or damage. Most of my damage is from the radiation . I have a herniated disc, and lots of aches and pains from just plain getting old!! Your Dr will write your prescription for your chemo according to your life style and your history. Your will have the drugs for your cancer, but the Dr decides how strong to order your nausea meds and your steroids. He may ask you how many hours you normally try to sleep, how many hours you work etc. They usually send your prescription to their pharmacy to custom mix this for you after you get there for each session. I had my first chemo the day after Thanksgiving and I lost my hair just before Christmas 2006. I went 16 months before I could style my hair with my hot rollers. Like I said in one of my earlier comments, I felt totally energized after chemo. The thing that knocked me down was the neulasta shot that I had to have 24 hours later. Not everyone reacts to that either. If you have questions please ask. Like I told Linda... I WILL WALK WITH YOU ON THIS JOURNEY AS FAR AND AS LONG AS YOU NEED ME . I have you in my prayers.

Thank you
It helps to hear a real live account of what it is like. I know all the drugs are different and everyone responds differently. I tend to have a pretty high tolerance for pain and such, but I am trying to mentally prepare myself. I do believe that prayer and attitude are everything.
Thank you again. It is good to know that not everyone gets deathly ill, that helps me face this. I tend to be an anxious sort when walking down a new path. I appreciate you and Linda walking along... it really is a comfort.
Deanna

pjba11 said:

aggressive condition
Do they not realize that this is a very aggressive condition? Even a day can matter. It is not like you are doing something elective. I had noticed some advocates on this site ..... maybe they have advise and have done this before. ?? Sorry for your more stress.

brachy
Just a thought... I ran into this with my brachy too. Since their phase 2 trial was so untried I went ahead with my brachy not knowing if I had coverage. They did cover it. NOW I HAVE SOME GOOD NEWS FOR ALL OF US. I need to follow up on this and get an actual article. BUT........... I think it was Ireland that a trial out on UPSC and they are certain that if women have a gyn/onc. doing the proper surgery our chances of longer survival DOUBLE. Anyone seen this on the sites??

wigs
I am so very glad you did the wig. I was so certain that my hair coming out was no biggy... but it hit me hard. I stood in the shower and pulled all of my hair out. I kept the shower running so I would not be able to tell the water from the tears. It is alos a hard day for your husband... even when they say it is fine.. it is still another hurdle. I had 2 very nice wigs that ran over $350.00 each, but I found I only liked one. I did wear both, but one not much. It was great to have a chance to try them on while I had my original hair. It was an easier color match, plus the stylist could see what I wanted. I still wear my wig if I am in a hurry or want a lazy hair day. When you go to chemo, ask for hats and scarves. They usually have an unlimited supply that volunteers sew for us. I got hit for over 1.5 million on my cancer. I pay prem. of over $700. month now since I am 'uninsurable. It is ridiculous.

Private ins too
I am the same. We farm and have a business. We pay private insurance. I too face the fact that they 'say' they can not discriminate by pushing my prem. up, but now they increase it each time by large amounts. I had to pay $15 per visit, plus approx 20% of our 1.5 so we got hit hard. I was in 17 medical facilities in 2007.