Uterine Papillary Serous Carcinoma (UPSC): any others here???
Comments
-
Common topic of discussionlindaprocopio said:I HAVE that T-Shirt!!
I have that T-shirt (My 'fighting shirt' for chemo days!) only mine says "Cancer, you picked the wrong BROAD". (femailcrations.com) I chickened out on the B**tch one. I'm trying to decide if I really would wear a great baseball cap I found online. On the front it says "I love the small of chemo in the morning", and on the back "Smells like remission." I know this stuff is corney, but I also think it helps psyche me up a little and makes the oncology staff smile. Although I must admit that when I went for my first chemo, my shirt was boasting a braver game than my own almost-crying face. But, for a good laugh, Google "chemo in the morning" and see the PROFANE cancer shirts there are out there, really funny ones that I'd surely get if I wasn't a respectable grandma.
MARGE: are you going for chemo every week? If so, you must be getting smaller doses than I am?? I only go every 3 weeks. My 6 rounds of chemo will take 21 months. Are you going to have your internal radiation simultaneously with your chemo? I met with the radiologist FIRST before the chemo doctor, and he did do an internal at 4 weeks that I hated and worried about, as I had a little pink when I wiped after that exam. But I've been fine since.
I was worried last night that I wouldn't be able to sleep because my knees and feet were so achy. But I took a couple Ibrupopen (No idea if that's okay or not) and shoved some pillows between my achy bones, and I slept just fine.
SEX is a topic of discussion at our house now, with my 8-week-surgery-anniversary coming up December 10th. I'm so dumb about some of this, and haven't had any conversations with my doctors about this at all. If they took out my cervix, is my vagina SHORTER now, or the same length? Are there still scratchy stitches up there? The 'chemo' booklet they gave me at the doctors says "wear a condom",...do they mean even with my husband?? We've never ever used a condom before so that's one more wierdness to add to this. I can't imagine how sexy I will be with this new huge scar snaking up my torso, a bald head (probably), and achy grandma joints and dry newly-healed vagina. And yet we still seem to be looking forward to this! I guess it's all a part of wanting to LIVE and be close and comfort each other. I'm thinking of wearing a low-cut long sleeveless ribbed undershirt the 1st time, for a sexy look that still covers my incision scar. I can't decide what to do about my head if I'm bald; a wig seems too wierd for bed. I can't believe I'm posting this. But who can I talk to about this, if not you guys? Any advice?
With the upcoming wedding, sex is a common topic at my house also. I'll give you my understanding, but still talk to your doctor. It is akward to talk to your doctor about, but you can do it. I said you aren't supposed to have to talk about these things with anyone but your significant other. I'm pretty sure they do sew up the top of the "new" vagina. I say that because the top of mine was slow to heal. This is where the collecting lymph fluid was escaping for a while, but it is healed now. I have read that your vagina may be shorter. Shouldn't be any sutures, they should have dissolved. We were given the go ahead last week, told to take it easy, use Astroglide and if it hurts, don't do it.
As for the scar... my opinion, your husband loves you. You are going to think about that scar a lot more than he will. Same for the bald head. He loves you so much and sees past the scars to the person you are and the person he loves. If it makes you feel better, wear the undershirt. I think he would tell you that you don't need it, that he loves you for who you are, not a perfect body! If he is still around to go through all of this with you, he's not going to think twice about the scars or bald head.
Ladies, have a great day. Take care of yourselves.0 -
cuffdeanna14 said:Common topic of discussion
With the upcoming wedding, sex is a common topic at my house also. I'll give you my understanding, but still talk to your doctor. It is akward to talk to your doctor about, but you can do it. I said you aren't supposed to have to talk about these things with anyone but your significant other. I'm pretty sure they do sew up the top of the "new" vagina. I say that because the top of mine was slow to heal. This is where the collecting lymph fluid was escaping for a while, but it is healed now. I have read that your vagina may be shorter. Shouldn't be any sutures, they should have dissolved. We were given the go ahead last week, told to take it easy, use Astroglide and if it hurts, don't do it.
As for the scar... my opinion, your husband loves you. You are going to think about that scar a lot more than he will. Same for the bald head. He loves you so much and sees past the scars to the person you are and the person he loves. If it makes you feel better, wear the undershirt. I think he would tell you that you don't need it, that he loves you for who you are, not a perfect body! If he is still around to go through all of this with you, he's not going to think twice about the scars or bald head.
Ladies, have a great day. Take care of yourselves.
I was told the term for the end of the vagina where the brachy is placed and where the highest recurrence could be is called the viginal cuff. I lost 1/3 of my vagina when I had surgery.0 -
I saw your post on the OVCA board
Hi,
While I didn't have UPSC, I did have endometrial uterine cancer diagnosed, and was found to have ovarian cancer when I had a hysterectomy/oopherectomy. I was not treated specifically for the uterine, which was staged 1b, but I was treated with carboplatin/taxol for the ovarian (1c). I finished my chemo early in 2003, about the time I joined a local support group for ovarian cancer.
You asked about avastin. I knew a woman who took it about 3 years ago, and she had very good results for a while, but it caused her blood pressure to go through the roof, and she had to try something else. She had high blood pressure to begin with, so that was no surprise. I've read good things about avastin being used to treat OVCA.
I didn't read through all of the posts in this discussion (you all have certainly been busy!), but if you have any questions about CA-125 levels, I or the other women on the OVCA board can probably answer your questions. I will say a couple of things, though; CA-125 readings can be thrown off by any infection or inflammation, and it's not considered a reliable indicator, particualarly in women of child-bearing age. It's not a diagnostic tool, but will compell a doctor to look further if it's high. (Normal range is 0 to 20)
It's interesting that chemo is being used for this form of uterine cancer. I would recommend that you pick up a copy of "Gilda's Disease" by Steven Piver and Gene Wilder. Dr. Piver is associated with Roswell Park in Buffalo, and I read this book and then purchased two copies so I could use it for reference and lend a copy. It's a pretty easy read, and I think it explains the typical chemo treatments that are still being used for ovarian cancer (considering it was published in 1994, it's about time newer things to be found), and how they work.0 -
How kind of you to respond! Thank you!groundeffect said:I saw your post on the OVCA board
Hi,
While I didn't have UPSC, I did have endometrial uterine cancer diagnosed, and was found to have ovarian cancer when I had a hysterectomy/oopherectomy. I was not treated specifically for the uterine, which was staged 1b, but I was treated with carboplatin/taxol for the ovarian (1c). I finished my chemo early in 2003, about the time I joined a local support group for ovarian cancer.
You asked about avastin. I knew a woman who took it about 3 years ago, and she had very good results for a while, but it caused her blood pressure to go through the roof, and she had to try something else. She had high blood pressure to begin with, so that was no surprise. I've read good things about avastin being used to treat OVCA.
I didn't read through all of the posts in this discussion (you all have certainly been busy!), but if you have any questions about CA-125 levels, I or the other women on the OVCA board can probably answer your questions. I will say a couple of things, though; CA-125 readings can be thrown off by any infection or inflammation, and it's not considered a reliable indicator, particualarly in women of child-bearing age. It's not a diagnostic tool, but will compell a doctor to look further if it's high. (Normal range is 0 to 20)
It's interesting that chemo is being used for this form of uterine cancer. I would recommend that you pick up a copy of "Gilda's Disease" by Steven Piver and Gene Wilder. Dr. Piver is associated with Roswell Park in Buffalo, and I read this book and then purchased two copies so I could use it for reference and lend a copy. It's a pretty easy read, and I think it explains the typical chemo treatments that are still being used for ovarian cancer (considering it was published in 1994, it's about time newer things to be found), and how they work.
I think that UPSC and ovarian cancer are treated almost the same way, with total hysterectomy and staging, 6 to 8 rounds of carboplatin/taxol (3 weeks apart), 25 external pelvic radiation treatments over 5 weeks, and 2 to 3 weeks of vaginal cuff radiation. Is that typical for ovarian cancer treatment? UPSC doesn't present itself with symptoms until late stages, and with all 4 of us, our Gynecologic Oncologists were caught by SURPRISE with this diagnosis. UPSC is a cancer that doesn't clump up readily, and instead sneaks about microscopically, and without very aggressive treatment, reocurrance quickly follows. CT-scans don't pick up a lot of the mischief of this cancer, and CA-125s are our main (abeit imperfect) treatment marker.
I posted on the Ovarian Cancer Discussion Board because I thought you all could help Deanna make her decision about the Avastin clinical trial. Thank you so much for the generosity and experience shared there. I will also be talking to my Gyn Onc about adding this to my chemo. THANK YOU!
UPSC GIRLS: Please check out the thread on the Ovarian Cancer Discussion Board about Avastin.0 -
How are you?lindaprocopio said:How kind of you to respond! Thank you!
I think that UPSC and ovarian cancer are treated almost the same way, with total hysterectomy and staging, 6 to 8 rounds of carboplatin/taxol (3 weeks apart), 25 external pelvic radiation treatments over 5 weeks, and 2 to 3 weeks of vaginal cuff radiation. Is that typical for ovarian cancer treatment? UPSC doesn't present itself with symptoms until late stages, and with all 4 of us, our Gynecologic Oncologists were caught by SURPRISE with this diagnosis. UPSC is a cancer that doesn't clump up readily, and instead sneaks about microscopically, and without very aggressive treatment, reocurrance quickly follows. CT-scans don't pick up a lot of the mischief of this cancer, and CA-125s are our main (abeit imperfect) treatment marker.
I posted on the Ovarian Cancer Discussion Board because I thought you all could help Deanna make her decision about the Avastin clinical trial. Thank you so much for the generosity and experience shared there. I will also be talking to my Gyn Onc about adding this to my chemo. THANK YOU!
UPSC GIRLS: Please check out the thread on the Ovarian Cancer Discussion Board about Avastin.
I was just wondering how everyone was feeling today. I'm doing great other than being extremely tired today. Gonna take it easy today and thinking about a nap already. I am looking forward to my short week of radiation this week, only 3 days. Next week will only be 4 days, then I am done with the external radiation. Then on the the vag cuff radiation, which I am told has less side effects thatn external radiation. It's all good so far...
I hope you are all well today. Take care of yourselves. Hugs.
Deanna0 -
Woke up feeling GOOD again!
I woke up at 3AM and my first thought was "My FEET don't hurt!". (I am such a fanatic HYDRATOR since I started chemo that I always have to get up to pee from my evening cups of green tea and plum juice.) It was so lovely for the pain to be gone, and it has largely stayed away all day. The 3 outside toes on my right foot had been throbbing enough yesterday that I called the doctor to see what I could take. (NOT Aleve, NOT Ibupropen, NOT aspirin: only Tylenol unless I need something stronger.) I also didn't take any nausea pills today and feel fine. I will admit that when I went grocery chopping just now, there was an overwhelming smell of MOLD by the freezer case that my husand couldn't smell at all, and I think that heightened sense of smell is treatment-related.
I decided to let the rest of my family make most of Thanksgiving dinner this year, with plans to still try and make a few of my signature dishes if I am up to it. So I got everything to make crescent rolls with the grandkids tomorrow, thinking we could freeze them for Thanksgiving. And I got everything to make pumpkin pies on Wednesday and broccoli souffle Thursday. We're all going to eat at my son's, buffet style. Frozen turkeys were so cheap that I picked one up anyway and may make it one day later this month when I am feeling especially good. I will so miss having the tons of Thanksgiving left-overs at my house! I love to freeze sliced baked turkey in small batches to use for stir-frys and quick casseroles.
Life on chemo is so much more normal than I'd dared to hope. I do need a nap now, after my shopping excursion, but all in all, I am happy today. Hope this post finds you all of similar mind-set and contentment! HUGS.0 -
Good Morning all!lindaprocopio said:Woke up feeling GOOD again!
I woke up at 3AM and my first thought was "My FEET don't hurt!". (I am such a fanatic HYDRATOR since I started chemo that I always have to get up to pee from my evening cups of green tea and plum juice.) It was so lovely for the pain to be gone, and it has largely stayed away all day. The 3 outside toes on my right foot had been throbbing enough yesterday that I called the doctor to see what I could take. (NOT Aleve, NOT Ibupropen, NOT aspirin: only Tylenol unless I need something stronger.) I also didn't take any nausea pills today and feel fine. I will admit that when I went grocery chopping just now, there was an overwhelming smell of MOLD by the freezer case that my husand couldn't smell at all, and I think that heightened sense of smell is treatment-related.
I decided to let the rest of my family make most of Thanksgiving dinner this year, with plans to still try and make a few of my signature dishes if I am up to it. So I got everything to make crescent rolls with the grandkids tomorrow, thinking we could freeze them for Thanksgiving. And I got everything to make pumpkin pies on Wednesday and broccoli souffle Thursday. We're all going to eat at my son's, buffet style. Frozen turkeys were so cheap that I picked one up anyway and may make it one day later this month when I am feeling especially good. I will so miss having the tons of Thanksgiving left-overs at my house! I love to freeze sliced baked turkey in small batches to use for stir-frys and quick casseroles.
Life on chemo is so much more normal than I'd dared to hope. I do need a nap now, after my shopping excursion, but all in all, I am happy today. Hope this post finds you all of similar mind-set and contentment! HUGS.
I hope today finds you all feeling well. I am looking forward to a short week of radiation(3 days), Thanksgiving and my wedding on Saturday! And of course after today only 6 more ext. rad. txs.
Linda, I am glad that you decided to let your family help with Thanksgiving preparations. I do so hope that you are feeling well and enjoy your holiday.
Marge, how was your secret mission with your hubby? I hope you had a great time. How are you feeling.
Peggy, hope all is well with you. Enjoy the holiday and STAY healthy.
Everyone was pretty quiet this weekend, I hope that means that everyone was too busy enjoying themselves to post. Some friends had a suprise wedding shower for me yesterday. It was a great time. I got to see a lot of friends that I haven't seen since I'm not working. I also got a lot of beautiful gifts (nighties), smell goods, candles, books and chocolate!
Have a healthy, happy week... Love you all and thank you always for being here!0 -
Good Morningdeanna14 said:Good Morning all!
I hope today finds you all feeling well. I am looking forward to a short week of radiation(3 days), Thanksgiving and my wedding on Saturday! And of course after today only 6 more ext. rad. txs.
Linda, I am glad that you decided to let your family help with Thanksgiving preparations. I do so hope that you are feeling well and enjoy your holiday.
Marge, how was your secret mission with your hubby? I hope you had a great time. How are you feeling.
Peggy, hope all is well with you. Enjoy the holiday and STAY healthy.
Everyone was pretty quiet this weekend, I hope that means that everyone was too busy enjoying themselves to post. Some friends had a suprise wedding shower for me yesterday. It was a great time. I got to see a lot of friends that I haven't seen since I'm not working. I also got a lot of beautiful gifts (nighties), smell goods, candles, books and chocolate!
Have a healthy, happy week... Love you all and thank you always for being here!
Deanna, I'm glad you catch a little break this week and I know your wedding is going to be wonderful on Saturday. I was married 29 years ago today in NJ. The weather was amazing, the temp was 75 degrees that day.
Saturday was a crying day for me. I felt very, very angry. Not sure exactly why, first time I've done that since I found out I had cancer. But my body feels great, I have loads of energy I have not felt in a long time. Yesteday I felt like skipping. What an emotional ride!
My Mom is at my house and yesterday I made her cut off the bulk of my hair so when it starts falling out there won't be so much. We laughed about it.
Have a safe and wonderful holiday, I'm happy that I'm not cooking this year!
Hugs to all.0 -
Happy Anniversary, Marge!
Happy anniversary, Marge! If there was ever a year to appreciate the love of a good man, it's the year you get cancer. Have a wonderful day!
DEANNA: I'm so thrilled about your wedding coming up and the bridal shower sounds like such fun! Being married to your best friend is simply the best.
It was a good weekend for me, as I am feeling pretty HEALTHY now! The grandkids and I made cresent rolls yesterday and painted ornaments for their Christmas tree while the dough was rising. We packed 50 rolls away in the freezer for Thanksgiving and ate at least a dozen hot from the oven. The house smelled SOOOOOO good! I got the okay to take them out of school at noon on Wednesday (played the 'cancer card'!) so that they could make the pumpkin pies with me.
And it was really great to feel good enough to go out into the garden and pull up my scarecrow and little terracotta knomes and angels and garden doo-dads out of the snow and store them in the shed. I even went into my attic to inventory my 'Christmas pile' of gifts that I bought all year when I saw things for people; and was down in the basement to see how well I was stocked with cards and wraps and boxes. I want to "make Christmas" while I am feeling this good. I was dead tired each night, but a good tired.
Today is Day 7 since Chemo Round 1, and I was instructed that all this week my white count would be at its lowest in 1st cycle. I was advised not to wear my contact lens or go into crowds, to wash my hands constantly and use antibacterial wipes on all surfaces, to take my temperature daily and call if it rises, and to use a new toothbrush this week each month. MARGE: are you also on 'germ alert' this week? I was told 'no dippy eggs or raw cookie dough or lunchmeat or salad bars'. BUT, I can kiss my grandkids and my husband if their noses aren't running. And I've always been a clean-nik so I'm not too worried. Anything else you can think of that Marge & I should be doing this 'low white count' week of our chemo cycle?0 -
I'm so happy for you both!lindaprocopio said:Happy Anniversary, Marge!
Happy anniversary, Marge! If there was ever a year to appreciate the love of a good man, it's the year you get cancer. Have a wonderful day!
DEANNA: I'm so thrilled about your wedding coming up and the bridal shower sounds like such fun! Being married to your best friend is simply the best.
It was a good weekend for me, as I am feeling pretty HEALTHY now! The grandkids and I made cresent rolls yesterday and painted ornaments for their Christmas tree while the dough was rising. We packed 50 rolls away in the freezer for Thanksgiving and ate at least a dozen hot from the oven. The house smelled SOOOOOO good! I got the okay to take them out of school at noon on Wednesday (played the 'cancer card'!) so that they could make the pumpkin pies with me.
And it was really great to feel good enough to go out into the garden and pull up my scarecrow and little terracotta knomes and angels and garden doo-dads out of the snow and store them in the shed. I even went into my attic to inventory my 'Christmas pile' of gifts that I bought all year when I saw things for people; and was down in the basement to see how well I was stocked with cards and wraps and boxes. I want to "make Christmas" while I am feeling this good. I was dead tired each night, but a good tired.
Today is Day 7 since Chemo Round 1, and I was instructed that all this week my white count would be at its lowest in 1st cycle. I was advised not to wear my contact lens or go into crowds, to wash my hands constantly and use antibacterial wipes on all surfaces, to take my temperature daily and call if it rises, and to use a new toothbrush this week each month. MARGE: are you also on 'germ alert' this week? I was told 'no dippy eggs or raw cookie dough or lunchmeat or salad bars'. BUT, I can kiss my grandkids and my husband if their noses aren't running. And I've always been a clean-nik so I'm not too worried. Anything else you can think of that Marge & I should be doing this 'low white count' week of our chemo cycle?
I am so glad you are both feeling well and enjoyed your weekends. Happy Anniversary, Marge! I can certainly relate to the "crying days." I have had a really great day with my mother-in-law and sister-in-law to be, and now tonite, I just feel tearful and I'm not sure why. Hormones, I suppose. My 39 year old body must be protesting to the lack of estrogen! Also, with the wedding coming up and everything seems to be going so good, it has all come together so perfectly... Sometimes I just get scared that it's gonna end too soon. Like people saying at my funeral, "she was such a beautiful bride and she was so happy." WOW. That sucked just thinking it, but typing it was worse. I guess, what I'm saying is I'm happier than I've ever been and more scared than I've ever been. I know I can't control any of this, but d***-it, I don't want to die! And quite frankly, I'm angry about this "plague" hanging over my head!!!!! I'm so thankful to have you guys to get this off my chest, cause I don't want to worry my family and I know you will understand how I'm feeling. I feel like a big weight was just lifted off of me. Thank you for listening! Don't worry, I have no intention of giving in to this and none of you are going to either. We are going to live and we are going to be stronger and appreciate every day more because of what we are going through. Thank you again.0 -
AW, honey! You poor thing!
I think a bout of tears is bound to keep happening, off and on, throughout this journey. We all give in to the justifiable melodrama of our situation...who wouldn't??? You wouldn't be human if you didn't indulge in some of that; we all do. I'm taking my grandkids out of school Wednesday at noon so that they can bake pies with me, and of course I think, "just so they can remember me and the family traditions if I'm not here next year at Thanksgiving", and then I cry a little for myself. I know I'm just wallowing a little, but I let myself do it just a little. And then I recognize it for what it is,...justifiable, allowable, and non-productive. And I close that door again, as tight as I can.
You'll dance at your 25th wedding anniversary, Deanna, and still fit in your beautiful dress! You're a SURVIVOR. The odds are something like 88% for us with the treaments we're getting. You'll be in that 88% that comes out of this clean. You will. All 4 of us are going to be in that larger group of survivors.0 -
Your sounding pretty darn normal to me....lindaprocopio said:AW, honey! You poor thing!
I think a bout of tears is bound to keep happening, off and on, throughout this journey. We all give in to the justifiable melodrama of our situation...who wouldn't??? You wouldn't be human if you didn't indulge in some of that; we all do. I'm taking my grandkids out of school Wednesday at noon so that they can bake pies with me, and of course I think, "just so they can remember me and the family traditions if I'm not here next year at Thanksgiving", and then I cry a little for myself. I know I'm just wallowing a little, but I let myself do it just a little. And then I recognize it for what it is,...justifiable, allowable, and non-productive. And I close that door again, as tight as I can.
You'll dance at your 25th wedding anniversary, Deanna, and still fit in your beautiful dress! You're a SURVIVOR. The odds are something like 88% for us with the treaments we're getting. You'll be in that 88% that comes out of this clean. You will. All 4 of us are going to be in that larger group of survivors.
Happy Anniversary Marge. I wish you many many more. Deanna, you are doing so good. You have such a wonderful future. I am sorry to hear your are going through 'this part' of your emotions with such a big few days coming fast. This roller coaster ride of emotions is to be expected but maybe not easily accepted. Your poor metabolism is wondering what all this radical change is about. I too cried about the unknown... lots of anger. I felt someone had taken away all my choices. Really cried alot. Never before had I been known to cry about anything!! I lost it .... really lost it when my 9 year old was in her Christmas program, I looked down the aisle of our church and then back up at her in her program and it hit me that instead of watching her come up that aisle as a bride she would have to watch me being carried down that aisle in a box... horrible way to think. Now, I look back and appreciate each mile stone I have seen since I was given this scare. I have the mind set that I WILL see her as a bride and I will see her as a mother!! You too will get past this 'funk' you are in. Give it time. Get your strength from above and within. We are all here and we will all BE HERE!! Right Girls!??0 -
Thanks for the support.pjba11 said:Your sounding pretty darn normal to me....
Happy Anniversary Marge. I wish you many many more. Deanna, you are doing so good. You have such a wonderful future. I am sorry to hear your are going through 'this part' of your emotions with such a big few days coming fast. This roller coaster ride of emotions is to be expected but maybe not easily accepted. Your poor metabolism is wondering what all this radical change is about. I too cried about the unknown... lots of anger. I felt someone had taken away all my choices. Really cried alot. Never before had I been known to cry about anything!! I lost it .... really lost it when my 9 year old was in her Christmas program, I looked down the aisle of our church and then back up at her in her program and it hit me that instead of watching her come up that aisle as a bride she would have to watch me being carried down that aisle in a box... horrible way to think. Now, I look back and appreciate each mile stone I have seen since I was given this scare. I have the mind set that I WILL see her as a bride and I will see her as a mother!! You too will get past this 'funk' you are in. Give it time. Get your strength from above and within. We are all here and we will all BE HERE!! Right Girls!??
Right!
Thank you for letting me purge. I feel a lot better after spitting all of that out and some tears. This is a good thing, I'm getting it out of my system and the rest of the week I can concentrate on my wedding. I really am excited and I think after my treatment on Wednesday I am erasing the word cancer from my vocabulary until next Monday's treatment. That's what I'm going to do... take a cancer vacation for 4 days and enjoy the holiday and my wedding. Thank you again for your kind words and encouragement. WE ARE going to get through this!0 -
Treatmentslindaprocopio said:How kind of you to respond! Thank you!
I think that UPSC and ovarian cancer are treated almost the same way, with total hysterectomy and staging, 6 to 8 rounds of carboplatin/taxol (3 weeks apart), 25 external pelvic radiation treatments over 5 weeks, and 2 to 3 weeks of vaginal cuff radiation. Is that typical for ovarian cancer treatment? UPSC doesn't present itself with symptoms until late stages, and with all 4 of us, our Gynecologic Oncologists were caught by SURPRISE with this diagnosis. UPSC is a cancer that doesn't clump up readily, and instead sneaks about microscopically, and without very aggressive treatment, reocurrance quickly follows. CT-scans don't pick up a lot of the mischief of this cancer, and CA-125s are our main (abeit imperfect) treatment marker.
I posted on the Ovarian Cancer Discussion Board because I thought you all could help Deanna make her decision about the Avastin clinical trial. Thank you so much for the generosity and experience shared there. I will also be talking to my Gyn Onc about adding this to my chemo. THANK YOU!
UPSC GIRLS: Please check out the thread on the Ovarian Cancer Discussion Board about Avastin.
I see similarities between OVCA and UPSC cancers; both are silent for the most part, and the majority of women with the diagnosis are caught off-guard by it.
The typical treatment is a total hysterectomy, followed by six rounds of carboplatin/taxol. This is what I had, and is what is given to women with lower-staged OVCA. I was not treated for the uterine cancer I had. It is barely mentioned by my local doctor, and I seem to have to remind me it was even there! My surgery was done by a gynecologic oncologist in a hospital that is more than 100 miles from here because we don't have any local gyn/onc.
I had a vaginal ultrasound and a CT scan prior to my surgery, and neither showed the cancers. What did show were uterine fibroids, which was no surprise to me (I had some removed surgically about six years prior, and knew they could grow back). My gynecologist and I knew something had to be done, and were discussing options. The issue was forced when I had a pulmonary embolism (blood clot to the lung). My gyn recognized that could be a symptom of lower body cancer, and did a mini-biopsy and found uterine cancer. I was very fortunate to have the ovarian cancer found at such a low stage - my "two-fer" of a lifetime! There was no CA-125 test done to my knowledge until after my surgery and first chemo treatment.
Is there any emphasis on trying to reduce estrogen in your line of treatments? I've been taking tamoxifen to suppress it, and it's apparently working to keep what may be recurrent ovarian cancer at bay for me, and it's been prescribed to two other women I know with ovarian cancer. I know endometrial uterine cancer is typically encouraged by excessive estrogen.0 -
Thanks for the tamoifen idea!groundeffect said:Treatments
I see similarities between OVCA and UPSC cancers; both are silent for the most part, and the majority of women with the diagnosis are caught off-guard by it.
The typical treatment is a total hysterectomy, followed by six rounds of carboplatin/taxol. This is what I had, and is what is given to women with lower-staged OVCA. I was not treated for the uterine cancer I had. It is barely mentioned by my local doctor, and I seem to have to remind me it was even there! My surgery was done by a gynecologic oncologist in a hospital that is more than 100 miles from here because we don't have any local gyn/onc.
I had a vaginal ultrasound and a CT scan prior to my surgery, and neither showed the cancers. What did show were uterine fibroids, which was no surprise to me (I had some removed surgically about six years prior, and knew they could grow back). My gynecologist and I knew something had to be done, and were discussing options. The issue was forced when I had a pulmonary embolism (blood clot to the lung). My gyn recognized that could be a symptom of lower body cancer, and did a mini-biopsy and found uterine cancer. I was very fortunate to have the ovarian cancer found at such a low stage - my "two-fer" of a lifetime! There was no CA-125 test done to my knowledge until after my surgery and first chemo treatment.
Is there any emphasis on trying to reduce estrogen in your line of treatments? I've been taking tamoxifen to suppress it, and it's apparently working to keep what may be recurrent ovarian cancer at bay for me, and it's been prescribed to two other women I know with ovarian cancer. I know endometrial uterine cancer is typically encouraged by excessive estrogen.
I believe that reducing estrogen production is a strategy for this type of uterine cancer, and I will certainly bring up the tamoxifen idea at my next gyn-onc appointment (scheduled during my next chemo December 8th.) Thank you for that idea! If my CA-125 doesn't drop after a couple of rounds of chemo, I imagine that we will want to add something else to the paclitaxel/carboplatin 'cocktail.'
You didn't have to have external pelvic and internal vaginal cuff radiation? After my 6 rounds of chemo, radiation is next. Sometimes they do the radiation first for UPSC, followed by the chemo. It's a long treatment regime with the surgery thrown in. You've been so helpful. Please know how grateful we are for your ideas. It honestly seems like the gyn-oncs are making this up for us as we go. There is really no 'gold standard' of treatment for UPSC yet.0 -
"OVCA-cousin": had an idea: tamoxifen
Isn't reducing estrogen production a strategy for this type of uterine cancer? I'm planning on bringing up the tamoxifen idea at my next gyn-onc appointment (scheduled during my next chemo December 8th.) If my CA-125 doesn't drop after a couple of rounds of chemo, I imagine that we will want to add something else to the paclitaxel/carboplatin 'cocktail.' Of course, I am praying that it DOES drop each time, verifying that any remaining cancer is being killed by my chemo. Just wanted to throw that tamoxifen idea out to you others as an idea to discuss as a back-up strategy.0 -
Happy Happy Thanksgivinglindaprocopio said:"OVCA-cousin": had an idea: tamoxifen
Isn't reducing estrogen production a strategy for this type of uterine cancer? I'm planning on bringing up the tamoxifen idea at my next gyn-onc appointment (scheduled during my next chemo December 8th.) If my CA-125 doesn't drop after a couple of rounds of chemo, I imagine that we will want to add something else to the paclitaxel/carboplatin 'cocktail.' Of course, I am praying that it DOES drop each time, verifying that any remaining cancer is being killed by my chemo. Just wanted to throw that tamoxifen idea out to you others as an idea to discuss as a back-up strategy.
Hi girls. I just wanted to wish you all a Happy Thanksgiving.
When you get a chance check out the post from hscvt, titled "Scared-looking for advice." She is 35 and pretty worried. She has been having some suspicious symptoms and has had 2 ultrasounds with thickened endometrial lining. I posted back to her, but it probably just scared her more. She has a lot of the same symptoms I had. Anyway, if you guys get a chance she could probably benefit from other insights.
Have a great holiday!0 -
Right Back At You....deanna14 said:Happy Happy Thanksgiving
Hi girls. I just wanted to wish you all a Happy Thanksgiving.
When you get a chance check out the post from hscvt, titled "Scared-looking for advice." She is 35 and pretty worried. She has been having some suspicious symptoms and has had 2 ultrasounds with thickened endometrial lining. I posted back to her, but it probably just scared her more. She has a lot of the same symptoms I had. Anyway, if you guys get a chance she could probably benefit from other insights.
Have a great holiday!
Wishing all a Happy Happy Thanksgiving...
Woke up today to find that my hair is starting to fall out, but I'm thankful for finding all of you and the sun is shining and life is good.
Hugs0 -
Everyone have a great Thanksgiving weekend?
DEANNA: Congratulations! I'm guessing that you had a beautiful wedding, but you will have to post the photos somewhere and let us all know where we can see them! I'm sooooo happy for you!
MARGE: After I washed my face this morning, I went to tug into place the hair I always tuck behind my ears, only to have about 20 hairs come loose in my hand! So my hair is starting to come out too! I gently raked through it with a wide-toothed 'afro pick' so as to put as little stress on it as possible and maybe eek out another couple of days. We'll see. How are you making out in the hair department? I ordered a baseball cap that says "Does this hat make my head look bald?" that I plan to wear for my first bald chemo.
PEGGY (anyone!): I was so concerned that I would be bald before my 'physical restrictions' were lifted that I just ignored the 2-month 'sexual time out' and went for it today after my Thanksgiving guests all headed out for home. (December 10th would be 2 months since my hysterectomy.) It was such fun and I don't regret it a bit, although I did have a little bit of blood on my tissues afterward. Do I have to confess this indiscretion to my doctor? It didn't hurt (NOT AT ALL! HA!), but I know I was supposed to wait for my surgeon's okay. I just didn't want to be bald for the 'first reunion' with my husband, and know I just have a couple days before I start losing my hair in earnest. We used a condom and Astroglide and took it easy. Please tell me this wasn't a serious no-no, and that the little bit of pink tissues is no big deal. I feel fine. (blush: better than fine! HA!)0 -
Thanksgiving was Greatlindaprocopio said:Everyone have a great Thanksgiving weekend?
DEANNA: Congratulations! I'm guessing that you had a beautiful wedding, but you will have to post the photos somewhere and let us all know where we can see them! I'm sooooo happy for you!
MARGE: After I washed my face this morning, I went to tug into place the hair I always tuck behind my ears, only to have about 20 hairs come loose in my hand! So my hair is starting to come out too! I gently raked through it with a wide-toothed 'afro pick' so as to put as little stress on it as possible and maybe eek out another couple of days. We'll see. How are you making out in the hair department? I ordered a baseball cap that says "Does this hat make my head look bald?" that I plan to wear for my first bald chemo.
PEGGY (anyone!): I was so concerned that I would be bald before my 'physical restrictions' were lifted that I just ignored the 2-month 'sexual time out' and went for it today after my Thanksgiving guests all headed out for home. (December 10th would be 2 months since my hysterectomy.) It was such fun and I don't regret it a bit, although I did have a little bit of blood on my tissues afterward. Do I have to confess this indiscretion to my doctor? It didn't hurt (NOT AT ALL! HA!), but I know I was supposed to wait for my surgeon's okay. I just didn't want to be bald for the 'first reunion' with my husband, and know I just have a couple days before I start losing my hair in earnest. We used a condom and Astroglide and took it easy. Please tell me this wasn't a serious no-no, and that the little bit of pink tissues is no big deal. I feel fine. (blush: better than fine! HA!)
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.0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.9K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 398 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 794 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 63 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 540 Sarcoma
- 734 Skin Cancer
- 654 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.9K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards