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

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

I was diagnosed with UPSC, and had a total hysterectomy and 25 lymph nodes removed for staging 2 weeks ago. The cancer had penetrated into the 2nd half of the uterine wall and into 1 fallopian tube, but my cervix and ovaries (all cut out now) were clear. One of the 25 nodes removed showed microscopic traces of the cancer, jumping my diagnosis to Stage 3-C. So now I have another 2 weeks to heal from my surgery before radiation and chemo begin. I had absolutely NO symptoms; this was originally caught during a routine annual PAP test this July, (which apparently never happens). UPSC is very resistant to treatment with a high incidence of recurrance. I guess I was hoping to find someone else here with the same cancer type that would tell me that the upcoming long months and months of aggressive radiation/chemo will allow me to greet the spring cancer-free. I can't find anyone who has this rare cancer.

deanna14
Posts: 733
Joined: Oct 2008

I was diagnosed in August with endometrial adenocarcinoma Stage I after having a D&C where they found a polyp. When I had the hysterectomy on September 11, the polyp was actually a tumor. They found 1 pelvic lymph node involved. Mixed endometrial and serous papillary adenocarcinoma Stage IIIC. I start radiation later today and will have chemo after 5 weeks of daily radiation and 3 weeks of weekly internal radiation. So, I can't tell you what expect, it sounds like we are at the same place in our journey. Please share any information you might find that would be helpful.

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

It DOES sound like we are traveling down the same road almost simultaneously, with you just 2 weeks ahead of me. Please stay in touch with me through this thread. I think that we could help prepare each other and share what we learn. I am 55, and in excellent health otherwise, with no concurrent conditions. I am hoping my life-lon excellent health will help me do well with my continuing treatment. My CA-125 was 50 prior to my surgery. Are they using CA-125 as a marker for your treatment? I get blood drawn again November 4th to get another CA-125 reading to see if there is any difference AFTER my surgery, but BEFORE my radiation (which will probably start the 2nd week of November). I think my radiation will be 5 days/week, for 5 weeks. I haven't been told yet what the chemo schedule will be. Do you know what it will be for you? I want them to be aggressive. The only thing I was told, informally, by the radiologist that will be doing my 'full abdominal radiation' is to expect diahrea in the later weeks of the radiation, and I was advised to try and put on a few pounds if I could in anticipation of that. I am drinking Boost and plan to purchase a case online of Boost and the other supplemental drinks and powders that Nestle makes for cancer patients. That's not advice of any doctor; I'm doing this myself, so you may want to talk to someone before you take MY advice! I'm a big believer in getting ahead of any potential problems. My oncologist just said "Eat whatever looks good to you, and rest", but I am trying to fortify myself. I would not wish this ordeal on anyone else, but I am happy to have found someone else who I can bounce things off, someone that will have practical real-life knowledge of what I am going through. I am also glad to be that resource for you. (((((deanna))))))

deanna14
Posts: 733
Joined: Oct 2008

I am also glad to find someone who can truly understand what I am going through. I have a wonderful partner and he has been by rock through all of this, but he can only understand to an extent how i feel. I also have wonderful family and friends. I am 39 and otherwise healthy, but have always had menstrual "issues," including endometriosis. The only different symptom was spotting between periods. In retrospect I think I had more symptoms, if I had only known.
Anyway, my CA-125 the day after surgery was only 11. They didn't check it prior to my hysterectomy because from the D&C, I was only Stage I. They they found 1 positive lymph node when they did my hysterectomy. They are also doing genetic testing. My grandmother had colon cancer, mother had endometrial and brother and uncle had colon cancer.
I start radiation tomorrow. I had my "dress rehersal" today, they set my up and did xrays to be sure everything was "set" correctly.So, my first real treatment will be tomorrow. Last week we did the simulation, where they made my molds and placed my tattoos. The tattoos are 3 small black freckles, one on each hip and one on my lower abdomen. I want you to be prepared, because no one told me ahead of time... when they placed the tattoos, I had to insert a vaginal marker. It kinda freaked me out, only because no one warned me ahead of time. I will do 5 days a week for 5 weeks external, then once a week for 3 weeks internal. My external radiation is belly button down. I was to told to expect diarrhea and fatigue. Possibly bladder problems such as urgency, frequency and increased incidence of urinary tract infection. Also, the possibility of burned skin.
When I complete radiation, I will get 5 weeks off prior to starting chemo. I'm not positive, but the initial talk was 3 days of chemo every 3 weeks for 8 cycles. Taxol and 2 other drugs that I don't remember. I am trying to approach one hurdle at a time. The reason I remember the Taxol is because that is the one that makes your hair fall out. I wanted to know that so I could mentally prepare myself. It seems like a stupid thing to worry about, but I just needed to know.
The doctor told me to eat what I wanted when I could. He encourages me at each visit to eat and especially no losing weight. I have occasionally been drinking Ensure supplements since surgery. Today at the cancer center, they gave me samples of different flavors of Ensure. The auxillary at the hospital donates them, so they are given out by the case for free to cancer patients undergoing treatment.
I am certainly glad to have someone to talk to. I will keep in touch and let you know how things are going. Let me know if you have other questions or tips. Take care of you!

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

I had no idea about the tattoos; maybe later on we can have them enhanced into something sexier than a freckle! HA! I can't tell you how appreciative I am to have you a couple weeks ahead of me, warning and preparing me, and giving me the time to wrap my head around some of the wierd stuff coming up so soon. Were you really freaked out when you started researching this cancer type? I bawled my eyes out, and I'm usually pretty tough. But now I keep thinking, why would I be one of the ones on the bad side of the percentages? You are young; you must also believe that you will be one of the larger percentage that will come out on the other side of this long winter of treatment, cancer free in spring 2009. As Fran Dreisher says "Cancer? Schmancher!"

deanna14
Posts: 733
Joined: Oct 2008

Well... it was a breeze. It took about 20 minutes from the time I got there until the time I was dressed and ready to leave. Each Wednesday after the treatment, I will see the doctor. So, I was actually there almost an hour today. The other four days will probably take less than 30 minutes. He said I would probably not have any side affects until about week three and that would be most likely diarrhea.
It was a good day... I went to lunch with a friend and went shopping for a little while. Now I'm off to take a nap :-).

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

How reasurring! Thanks so much for letting me know; that's extremely kind of you. So far, it's been pretty lopsided as far as what I am able to offer you, compared to the valuable insights you are able to give me. But our shared journey has just begun and I hope to one day be in a position to return the favor. If you picture yourself in my shoes, then you know what a gift your information is for me. Please know how much it is appreciated. Stay rested!

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

I neglected to congratulate you on your low CA-125 efter your surgery!! I know that you didn't have an established 'pre-surgery' number to compare it to, but I think you can hug that number to your heart and legitimately feel optimistic that your surgery removed all of the cancer already. Maybe I am reading too much into this imperfect tool, but I am anxiously awaiting my CA-125 number following my surgery. Mine was 50 prior to surgery and I will have blood drawn November 4th and have my 'after-surgery' number about a week after that. If I am lucky enough to have a number like yours, I will rest easy during the rest of my treatment, believing in my heart that the cancer is already gone from my body, and that all of the rest of this is just a precaution. I thought that might give you another happy thought to cling to in the dark of night when the worries sometimes creep in. I wouldn't let a low CA-125 stop me from having the radiation and chemo, but I do think it is a symbol of justifiable hope.

deanna14
Posts: 733
Joined: Oct 2008

I hadn't thought of it that way, but thanks. I really needed that perspective. I've had a rough few days, emotionally. Somehow starting treatment just made it all so real! My doctor put me on Effexor after surgery, partially because it is used for the menopausal symptoms and partially because he suspected I might have some depression. He assured me that I am justified in feeling a little depressed at my age, going through what I am. I never thought I would need them, but I have been having trouble sleeping. I just can't seem to shut my brain "off." You know, the what ifs... In my heart, I know that everything will be alright and that I can't change any of it. I just have to go through it and trust that the Lord will bring me through it. But I still think what if I would have done this or that. Anyway, yea I think the CA-125 result is really a positive sign. Thanks.
Are you doing okay? How are you emotionally? Are you going to work through treatment? Do you have a good support system, people you can lean on? I will be here for you. I try to check this site every day or every other day. Please, if you need to vent, I will be here. God bless you, you are in my prayers every day.
I had a good long cry last night with the support of my fiance. I woke up early this morning feeling very refreshed!
Take care, talk to you soon.

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

I had my really dark days right after my diagnosis, 1 bad night after I researched UPSC reoccurance rates; and another bad night when I got my Stage 3C pathology diagnosis. I sobbed both times more than I've ever cried for anyone or anything else in my life. (I don't know what that actually says about me as a person, but it's true.) I woke up one night crying, after dreaming of making love to my husband, afraid that I may never be that person again. But most of the time I push away all thoughts of it. I have my own business, and work from home (www.procopiofundraising.com) and have been very busy training people to do as much of my work as I think they can handle, reassuring my 24 clients that there will be no disruption in service, and doing extended planning of assignments for the staff. (Ordinarily I only plan out 2 months; I am now trying to have a tentative work plan for each client that extends out a full year.) I was pretty miserable the 1st week after my surgery, but I do not tolerate medication well (which doesn't bode well for my chemo) and haven't taken any pain killers of any kind since 2 days after my surgery. And now it's 3 weeks since my surgery and I am just now feeling good enough to do light work out in the garden, and go out to eat with friends, and tonight my grandchildren will sleep over for the 1st time since my surgery. So I guess I am in that brief period between treatments where life almost seems normal, almost. I have always been one of those busy busy busy people, scurrying around always productive, squeezing the most out of every moment of the day, trying to 'have it all'. I went to the gym every day, and am an organic gardener with huge gardens I love to work in. I am very close with my children and I have a wonderful (abeit anxiety-ridden) husband of 11 years who is having a worst time with this than I am. My oldest son is an attorney (35) and lives 5 hours away but has been home twice since my diagnosis. My youngest son (age 33) and his wife and 2 kids live less than 2 miles away and my schedule has always been filled with the grandkid's sports and school events and weekly sleep-overs and 'Grammy Days'; coupled with a 60-hour work week that extends until 11 pm each night. I have a couple of wonderful long-time girlfriends. I am blessed with a great support system. So, that's the LONG answer to how I am doing emotionally. Right now, between treatments, I am doing surprisingly well. Now, if my 'after surgery' CA-125 goes up when I get my results back around Nov 11th, I can see myself spiraling downward with the implications of that. But I try not to 'borrow trouble'. It's hard not to peek around corners and try and guess what is coming next. But try not to do the 'what ifs'. It just makes you unhappy and anxious. Even if you are not religious "put it in God's hands". I try not to show my fear and grief to my family, so finding you to talk to is really wonderful. Thanks.

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

You've been on my mind. I was wondering how the 1st week of radiation went. You okay? I see my radiology oncologist for the 1st time Monday, so it looks like I will be joining you with the daily radiation routine very soon. Please let me know that you are okay.

debbiejeanne's picture
debbiejeanne
Posts: 2305
Joined: Jan 2010

Dianna, I'm sorry for your dx. It is awful what people go thru with this nasty beast. I am here for my sister in law who has endometrial cancer of uterus and ovaries. I wanted to let you and all know that the American Cancer Soiecty will pay for a wig if you want one. They also offer a make up class and give you lots of make up. The reason for that is if you feel good about the way you look you will feel better all over. I hope this info helps you and others. Hang in there.
God Bless,
debbie

jctavener
Posts: 2
Joined: Jan 2010

See my past of jan 16, 2010. it pertains to your post as well. Good Luck. Jo Tavener

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

You sound so much like me. I was diagnosed 2YEARS ago. I have maxed out on a hysty, chemo, radiation and internal radiation. If you have any questions or would like to hear more of my story... just ask. Fight the fight. The journey is scarey and long. Life changes with one phone call and one word.

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

2 years! I so wish you will be telling me that you had no re-occurance and that you are NED (No Evidence of Disease: a new abbreaviation I just learned!). But even if your story doesn't yet have that happy ending, I still very much want to hear it. I do better when I am prepared for unpleasantness. By 'maxing out' do you mean you did the full schedule prescribed, or that you took it as far as your body would allow before toxifying? I know everyone's different, but if you are still having side effects from the radiation, that could help me. You were Stage 1; I am Stage 3, so I may not have the option of NOT having full abdominal radiation.

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

NED!!! I had not heard that term. BUT YES!! USE IT FOR ME!! IT FITS. How I pray it 'fits' you soon too!! My prayers are with you.

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

I am sorry I was so caught up in all of this that I may not have answered you question on maxing out... I had all of my treatments except I stopped after 5 chemos instead of 6. My Dr was very supportive of this. She said she had nothing to support the theory that 6 would 'cure' me and 5 would not. We are all different. I did do the rest of my 25 radiation (external) and 3 internal. I still have to use a dialator and cannot do estrogen. But no other meds. My hair came back thicker and instead of stick straight as I had ... it was curly! Now it is straight and not as thick. But it was fun while it lasted... I have a full body scan every 3 months and a CA 125 every 3 months. So far so good. I wish all of the best to your future too. My prayers are with you. If I had known 2 years ago what I know now none of it would have been as difficult. Hang in there. May any 'surprises' be good ones.

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

Yours is the success story I have been trying so hard to find. I could HUG you! Was it the internal rads that left you needing to use the dilator? I may not have a choice, and I DO want to be aggressive, but I have always LOVED my sex life and so worry about all that with the radiation. My husband says he'd go without sex forever to have me live, but I'm not going to let that happen if I can help it. Does the radiation oncologist talk about that openly or do I need to ask about that possible side effect? I am Stage 3, so I think they'll be doing all the radiation and chemo my body can take. If I get any news tomorrow about my treatment calendar, I'll post here again when I get home.

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

It is of my opinion that you do not have to be concerned about your sex life from what I have experienced... the Dr actually recommends sex a minumum of 3 times a week or use your dialator that often to keep your muscles closer to normal. The rad dept gals brought me the dialators and told me about the cause... otherwise I knew nothing about this. It was a surprise to me, but I would have gone through all of it either way. The internal treatments were not bad. The simulation takes any surprises away. There is no pain, maybe just a steady pressure sensation. 1/3 of my vagina was taken in my surgery. I was told it is the combination of radiations that causes atrophy..spelling?? I have also been told that taking fish oil capsulses will really help. Many have a very thin lining left in the vagina because of no estrogen. It really is not that big of a factor. Life is great. I will be waiting to hear all of your GOOD NEWS. PS MY oncologist and I had a great time laughing when I told her that the gals actually asked me how big my husband was. ( so she knew what size dialator to send with me.) I skirted the issue enough that they sent me 3 sizes just in case..... IS NOTHING SACRED HERE!! HA!! ONce again you have my prayers. Good luck.

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

You are giving me the reasurrance I need; I am in your debt! I wish that 'deanna14' would pop back in and let me know she's okay after her 1st full week of radiation. Your 'happy ending' would be so good for her to read; it's wonderful to know someone that came through all this and is healthy and happy again. Deanna is only 33, so has the instant menopause that I was spared since 'the change' was years ago for me, long before the cancer. Your cheery posts would be much better for her than my slightly anxious ones! Sex 3 times a week; that sounds good after a month of 'restrictions' with another 4 weeks before I will be back in commission following the surgery. With my luck I will be too sore and dehydrated by then from the radiation to even care! HA!

wje630
Posts: 14
Joined: Nov 2008

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.

deanna14
Posts: 733
Joined: Oct 2008

Hi, you were actually replying to Linda's post, but my name is Deanna and I am also undergoing pelvic radiation. I had a hysterectomy in September and had not been active until this weekend after I got married. At first, it was very uncomfortable, but it seems to be a little better each time. Anyway, I just wanted to thank you for posting and sharing your experience. I am sorry for all the troubles you have had. Sharing your experience will help others, so thanks for being so open. I hope that things get better for you and your significant other. God bless and take care,
Deanna

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

(This is supposed to be a reply to the new poster to this thread, but somehow it ended up at the bottom of the whole thing and she may never see it! What am I doing wrong? I will try and cut and paste it in again under her post, and apologize in advance if I get it in twice.) I am so sorry that you have had such a bad experience with your pelvic radiation....especially since it sounds like they gave you no direction as to how to best resume your sex life. How can doctors think this may not be important to you??! My surgeon called me in mid-November and suggested that I give him a call for an appointment "after you finish your chemo in March". When I said, "your instructions say that I am not to have intercourse until you examine me and give me the okay", he said "Oh,... okay, you can call for an appointment in early December". He would have just let me wait another 3 months when I had already waited 7 weeks because of my hysterectomy! I may be 55, but I'm not DEAD! HA! As it turns out, we didn't make it until the beginning of December anyway! But at least I have Deanna, Peggy, & Marge to get advice from here. Between the snippets we get from our various oncologists, we stay pretty well informed. I will be having pelvic radiation and internal bracy radiation after my chemo, and NO ONE at my oncologists have mentioned dilators or sex at all. But you can ask and get answers for almost anything on this message board. I fear the sexual side effects of the radiation more than I do anything from the chemo. Please join us here in this thread. We'll be there for you. HUGS.

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

Yes, I hope to hear from her too. We are all in this together. Just another bit of humor (which can be so hard to find some days) When I was being told about the dialators the nurse practioner was trying so hard to get me to understand that I had to use the dialater or have sex 3 time at least 3X week and that it was so very important... she must have said this 6 times... finally I couldn't help myself... I said "well, I will try to cut my husband back to that ,,, but who knows how that will go." The look on her face was priceless. I had to keep a straight face all the way out into the hallway. I think a lot of people getting off the elevator wondered what could be so funny in onlcology. KEEP THE FAITH!!

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

OHHHHHH! I hope I get a chance to use that one!! That's hysterical! You made my night! :D

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

Hi, pjba11! (Is there another name I can use??) I'm posting this here, hoping that Deanna and Marge will find their way to this thread, so that we four 'UPSC sisters' will be in one place. I had my initial consultation with my radiology oncologist, and he thinks I should have my chemo 1st before the radiation. He says that radiation sometimes compromises the bone marrow to the point where you are then unable to complete all of the chemo rounds. The radiation doctor echoed what you said: he said he almost never does full abdominal radiation anymore because the side effects are so extreme, and that he would want to do pelvic radiation initially after the chemo, followed by internal radiation. (I guess he saves full abdominal radiation for reoccurance or something!) He also echoed your sentiment that the higher post-surgery CA125 was probably a reaction to the surgery itself and that I shouldn't worry about that. (You are AMAZING! I'm paying him big bucks to tell me what you told me for free! Thank you!) So now I wait for the chemo oncologist to call for a consultation. (I'm no good at waiting; I'll call him if many days go by!) Meanwhile the radiology doc ordered an abdominal / pelvis CT-scan, & chest Xray for this Thursday. Oh, and I never expected the radiation doctor to do an internal exam, but he DID! (even a rectal poke around! EW!) I really wanted to come out of today's appointment with a treatment schedule so that I could plan Thanksgiving and Christmas and know if I will be well enough to cook and entertain. Ah, well. We can do 'take out' Thanksgiving if need be!

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

What a day you have had... I finally remembered that the Einstein Institute had the phase 2 clinical trial on upsc. I hope you take the time to research this. I feel that and a suppliment I am taking is why I am alive. This trial specifically wants the 3 chemos then the radiation then the other 3 chemos then the brachy. I had to really fight to get my Drs to do this. But I/they did it. I have never had any rad. do any internals. The only internal I had was from my gyn/oncologist. The people who worked on me wanted to leave everything alone so that I could heal from my hysti. My oncologist has never done any internal. I passed up the first rad Dr. he gave me the creeps and he was not even close to wanting to hear how I wanted my treatments sandwiched. 'he would set up my routine' HA! When I went to the next Rad dept they had a long office call to discuss what I wanted to do and then sent me home.. 5 hour drive. The next appointment that amazing Dr had the complete clinical trial IN HAND A MIRACLE. He said he had to go through H and back to get the complete trial for me .... but I know in my heart and mind that he saved/extended my life to this point. We did the simulation and on we went. I am also taking a suppliment that is my 'mini kemo.' I do not know if I am able to talk about suppliments on this site. I do not sell it. My cousin had cancer and was sent home in a wheel chair to die then he found this suppliment (out of the thousands on the internet) went on this suppliment and he is alive and well for at least 5 years now. ( in my opinion that was not chance..) You have a lot of decisions to make... how well I remember!! What ever you decide to do will be a step in the right direction as long as it is aggressive. Most of what you have to deal with is not bad. I can not think of a thing that would make me stop doing it all again if I had to. I did not get a port for my chemo. Drink at least a bottle of water.... chug it down ALL OF IT as soon as you are out of radiation. Most of the time patients throats get very dry. Nurses do not tell you this. If you do not drink right away you may have trouble breathing easily during the night. My little girl used to lay by me and say breath again mom. One night I passed out and she thought I died. Poor little girl. Then I researched the water thing and it worked!!! This is a lot of typing.. if you ever want to talk just call. (Or are we not able to do that type of thing on this site. ) I am sure you have a lot to talk about with your family now. It sounds like your husband is emotionally and physicall supportive .. but I know he has a difficult role in this. I thank God every day that I am the one with cancer because I would not have been strong enough to be the care giver for those I love. I had to do it for my mom. I would not give that up for anything in the world. Nor could I repeat it. God be with all of our families that we never give them more than they can handle. I have to take my daughter to dance class for an hour, but if you need me I want you to know I WILL WALK WITH YOU ON THIS JOURNEY AS FAR AND AS OFTEN AS YOU NEED ME.

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

You are such a blessing and a treasure for me! I have no idea what the roles are here, but my email address is XXXXXX@XXX.XXX if you want to chat outside of here. I figure I can leave this up here until I hear from you, and then go in and EDIT my email address back out in case this is a faux pas. HA!

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

In case you are interested I wanted to send you this while I can remember it. My radiology oncologist found the actual trial which was many many pages. This is a phase 2 trial as far as I know. I did the brachy after this. I also only did pelvic radiation not whole abd.

Weeks 1-9
Paclitaxel 175 mg/m2/3 hour & Carboplatin (AUC=7.5)
Repeat every 21 days x 3 cycles

Weeks 8-13
Pelvic and Para-Arotic Radition 6MV Photon Beam Energy
1.8 Gy Dose/FX
Total Dose 45 Gy

Week 14, 15,16
High Dose Radiation (HDR) X3
Nucleotron Microselection Afterloading technique
5 Gy to 0.5cm Depth from the Vaginal Cylinder Surface
Total Dose 15Gy

Weeks 14
Paclitaxel 175 mg/m2/3 hour & Carboplatin (AUC=6.5)
Repeat q 21 days x 3 cycles

deanna14
Posts: 733
Joined: Oct 2008

Hi Linda,
Sorry I haven't been around for a while. I have been very busy with treatments and I am getting married on the 29th of this month. I always knew I had a wonderful man in my life, but going through all of this together has brought us closer than ever. If ever I doubted his love for me, I don't now. He has been my rock and I can't imagine life without him. Anyway, we are having a small family ceremony, but it is a lot of details to put together!
I am on day 11 of external pelvic radiation treatments. I have had some mild nausea in the afternoons, but nothing I can't live with. I am also having some fatigue, but I am not working, so I just lay down and rest when I need to. This week, I have started with some mild intestinal side effects. I haven't had to take medication for it yet though.
The oncologists and the radiation doctor both agreed that the very top of my vagina was not completely healed yet, but we needed to get treatment started. I am a little worried because I am restricted to no sex until my vagina is healed. They are not planning on checking until by external treatments are completed the first week of December. I have heard and read about the dilators or having sex 3 times per week. What happens since I am restricted? I guess I need to find out if there will be damage because of this. I sure hope not, I am only 33 and getting married in a few weeks. I would do anything to live, but it will be difficult if we lose that intimacy!!! Any ideas?
I hope you get your oncology appointment soon. I definately think the waiting is the most difficult part emotionaltly. We ARE going to get through this...

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

Sorry for the confusion. I missed this post and replied to your later one, so just ignore my questions about your radiation in my other post. CONGRATULATIONS ON YOUR WEDDING! What a wonderful man! To know to do such a reassuring, loving and affirming act NOW, instead of later! He's a 'keeper', for sure! I think that's just beautiful and I am so happy for you.

I am glad that yours is also 'pelvic' radiation because if you had 'full abdominal', I may have had to re-visit my radiation doc's recommendation, since we both are Stage IIIc. And I didn't want to face the side effects of full abdominal if I don't have to. I'm also still under 'no sex' restrictions, too, for at least another 2 or 3 weeks. I don't think the dilator routine starts until AFTER the radiation is OVER, so you may have your restrictions lifted by the time the 'sex 3 times a week' requirement kicks in. But we should let Peggy (pjba11) reply to that, as she is the one with real experience here.

PEGGY???? YOU THERE??? ;)

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

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.

deanna14
Posts: 733
Joined: Oct 2008

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.

ameyc2
Posts: 4
Joined: Mar 2013

Hi I am Christine, I am new to the site and joined because I wanted to see if there were any other women out there that could share their thoughts and experience in using the dilator. I saw your post and thought your comment was cute!! However it was several years ago and the site is a little overwhelming when trying to narrow down a topic...Can you perhaps direct me to a place on the site that deal with women after treatment and issues like the dilator and just life in general after uterin cancer. Im five years cancer free but live with the radiation damage and related issues dayly.

 

look forward to hearing any news or thoughts all the best!

 

Christine

ameyc2
Posts: 4
Joined: Mar 2013

Hi I am Christine, I am new to the site and joined because I wanted to see if there were any other women out there that could share their thoughts and experience in using the dilator. I saw your post and thought your comment was cute!! However it was several years ago and the site is a little overwhelming when trying to narrow down a topic...Can you perhaps direct me to a place on the site that deal with women after treatment and issues like the dilator and just life in general after uterin cancer. Im five years cancer free but live with the radiation damage and related issues dayly.

 

look forward to hearing any news or thoughts all the best!

 

Christine

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

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!

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

I'm sorry to hear that you had the 2nd cancer, but how wonderful that they think they got it all!!! I would be dancing in the streets to hear that, although that is not my diagnosis (I'm stage IIIc.) But I share your frustration that the doctors so often seem surprised by what they find in the pathology: that realy shakes my confidence in them. I will probably start my chemo next week. I see my chemo doctor tomorrow, and also have a CT scan and chest Xray scheduled for tomorrow evening by the radiation oncologist. More tests always makes me nervous,...like what are they worrying about and checking on?? I worry that he heard something when he listened to my chest, or that he felt something when he did all that degrading internal digital probing. Hopefully this is just a routine thing, as I haven't had ANY imaging done yet, and maybe they are just catching up on routine diagnostics. HOPE SO!! Please try and find out what chemo cocktail you're taking and how many rounds they plan for you. Interesting that they are doing the chemo first; my oncologists disagreed on that, but now I am pretty sure chemo will be first. With these aggressive 'traveling' sneaky cancers that stay small and hide so well, I guess they want to do a broad attack, body-wide, as fast as they can. Then the radiation can focus in on the area most likely to be the reoccurance site. Forgive my ineptitude, but where do I find your name with the little person icon so that I can "Buddy" you?? (((((((Marge)))))))

deanna14
Posts: 733
Joined: Oct 2008

Linda,
I had a CT of chest, abdomen and pelvis after my first visit with the radiation oncologist. I was told that it is a baseline to make sure that it hasn't spread. Also, it will be used as a comparison film when you complete treatment and have follow up CT's to monitor for reoccurance. Then I had another CT without contrast during simulation for radiation, when they made my molds and placed my tattoos. Hope this makes you feel better about your upcoming diagnostic exams!!

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

Thanks so much! It's awful how the mind immediately starts worrying and thinking the worst. How is the radiation going? Do they consider what you are having 'full abdominal' or 'pelvic' radiation? They only want to do pelvic radiation on me and I have mixed feelings. I don't relish the possible side effects of full abdominal radiation, but I am Stage IIIc, and I want to be very aggressive with this. I am glad to see you posting again, now that we have 2 other 'UPSC sisters' posting here and have even more perspectives and experiences to share amongst us. It's not a club anyone would want to join, but I am still so very happy to have the other 3 of you to travel down this road with. Is your radiation going good? You okay?

deanna14
Posts: 733
Joined: Oct 2008

Sorry. I posted this above then saw your last post. Confusing. Anyway...

Hi Linda,
Sorry I haven't been around for a while. I have been very busy with treatments and I am getting married on the 29th of this month. I always knew I had a wonderful man in my life, but going through all of this together has brought us closer than ever. If ever I doubted his love for me, I don't now. He has been my rock and I can't imagine life without him. Anyway, we are having a small family ceremony, but it is a lot of details to put together!
I am on day 11 of external pelvic radiation treatments. I have had some mild nausea in the afternoons, but nothing I can't live with. I am also having some fatigue, but I am not working, so I just lay down and rest when I need to. This week, I have started with some mild intestinal side effects. I haven't had to take medication for it yet though.
The oncologists and the radiation doctor both agreed that the very top of my vagina was not completely healed yet, but we needed to get treatment started. I am a little worried because I am restricted to no sex until my vagina is healed. They are not planning on checking until by external treatments are completed the first week of December. I have heard and read about the dilators or having sex 3 times per week. What happens since I am restricted? I guess I need to find out if there will be damage because of this. I sure hope not, I am only 33 and getting married in a few weeks. I would do anything to live, but it will be difficult if we lose that intimacy!!! Any ideas?
I hope you get your oncology appointment soon. I definately think the waiting is the most difficult part emotionaltly. We ARE going to get through this...

deanna14
Posts: 733
Joined: Oct 2008

P.S.
Good luck with your tests... I'll be thinking of you and praying for you.

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

That is exactly what I would have said.

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

I will be having Paclitaxel and Carboplatin 6 rounds every 3 weeks for 18 weeks.

The little icon should be next to my shortmarge name.

Stay strong...

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

So sorry to hear you are in this mess too!! But nice to meet you. I am taking Z Natural 15 drops 3 X day. I also do essiak, multi vit. calcium, and fish oil caps. I do the essiak and Z every day and the rest of them as often as I think of them. If you have an email address I can send a report from one doctor in the Z natural it is also been known as cellular defense in the past.

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

my e-mail address is shortmarge@yahoo.com

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

I will send you all the information I have. I just went outside and found our beautiful dog Rae dead. She had cancer. This Cancer makes me so angry!! WE NEED TO BEAT IT GIRLS!!!!

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

We lost pur pet rabbit just before I found out about my cancer, and those 2 sad events will be forver linked in our minds as a part of the "worst month ever". I'm so sorry for your loss, kiddo. HUGS!

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

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.

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

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

If I may comment on you getting knocked on your A** ......... Let's get it straight right now the only thing getting knocked on it's A** today is cancer. !!!!!!!!!! Fight the fight. If you get a minute after chemo please post us to let us know how you are. I know if I say a prayer or two today for you it will surely help too. If you feel alone or tested today settle back and feel us emotionaly with you. We are here!!

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

I have had a tiny worry since the radiology oncologist felt the need to stick a finger up there to do some 'finger inside/other hand on the belly' palpatation, since I had a little pink on my toilet paper right after that exam. I am hoping it was just pink KY jelly/lubricant (does KY ever come in pink??) There was nothing since then, but of course, the worry of infection immediately crossed my mind, since my surgery was just 4 weeks ago and my stitches up there are still pretty new. I'll be alert to any symptoms down there and make a cautionery protest if anyone else feels the need to poke around any time soon! We really appreciate your experience here, as this is SUCH unchartered waters for us newbies!

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