Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatm
Comments
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Welcome Janet!jankenb said:roll call
Hi I am Janet
I am a 52 year old physician who had radical hysterectomy Feb 25, and since 2 pelvic nodes positive and washings positive, I am stage 3c Grade 1
I started Chemo on March 25th with Carbo/taxol, I will recieve a total of 6 rounds.
I start brachy therapy on April 17th for 3 weekly and then External beam radiation on May 11th for 25 rounds
I had a PET/ctscan on March 25th because my doc thought this was all unusual for grade 1 tumour, and it was negative.
I am not certain what UPSC means but my tumour is endometrioid
janet
So sorry that you are going through all of this, but glad that you found this site. We have a really supportive group of ladies here. Your treatment sounds similar to that of most of us here. UPSC is uterine papillary serous carcinoma, it tends to be more aggressive and recurrent than endometriod uterine cancer. Thank goodness that yours is endometriod, I think the cure rate is pretty high for your type of cancer. We are all in various stages of recovery and treatment. It really helps to have these ladies as a sounding board, I hope you find it helpful also. Feel free to ask any questions, we are all pretty open and supportive. I hope you are feeling well after your first chemo treatment.
Take care... hugs,
Deanna0 -
Hi Kelly and all - My name is Paige and I'm 38. I was diagnosed Jan. 09 after hysterectomy for fibroids. Unfortunately - due to the surgery plan we had for fibroids, they left in my ovaries, tubes and of course nodes, not knowing the cancer was there. Initially they thought I was 1C with about 65% myometrial invasion and grade 3 hybrid histologic type of large cell/neuroendocrine(small cell) cancer. But I had a PET scan in March that revealed spread to 1 pelvic, 1 paraaortic and 1 portal lymph node (still can't figure out exactly where that is, but have been told it's up high behind the liver). So they now consider me stage 3C at a minimum and probably stage 4. All other organs are clear thus far. Started Cisplatin/Etoposide chemo in Feb and just finished 3rd round last week w/3 rounds to go. Will repeat the PET scan next week to see if chemo is working and determine next steps for radiation. Plan is for full abdominal radiation for 6 weeks in the middle of chemo. However I am scared about the long-term side effects I see some of you having from thisirishohiogirl said:Roll Call
Hi my name is Kelly with a screen name of irishohiogirl. I live in Westerville Ohio, I was diagnosed Sept 2007 at the age of 39 after a hysterectomy for fibroids with grade3 adenocarcinoma endometrial cancer. Had a second surgery for staging -removed close to 30 lymph nodes with 3 being positive one in my para aorta node. I am stage 3C grade3. Went through six weeks of radiation to abdomen and pelvis (still have abdominal pain and gastrointestinal issues as a result)and then 6 months of chemo Carboplatin and Taxol. Had lots of problems with white blood cells and received Neulasta after every chemo. Finished chemo in July and now have to have CT scan on April 9th after my check up CT revealed "conspicuous" enlarged lymph node in my chest. I feel blessed to be here and am grateful for all of you who share your journeys.
Drs believe my portal node is a metastasis because it measures 3 cm. I am told that the portal node would be a highly risky surgery to do to go in and remove and also near impossible to radiate so chemo is the primary hope to reduce/eliminate it.
So far my only side effects have been low white blood counts and random chest heaviness. Kelly did the Neulasta work for you? did you have any side effects from it? My Dr told me it might not work as well for me since I'm doing 3 days in a row every 3 weeks and it works better for 1 day plans....but I don't want to delay treatment. Apparently the neuroendocrine part of my cancer typically recurs within 2 years, so I'm willing to blow a nuke bomb off in my body if it will help prevent recurrance! From what I understand, once it recurs - there's not much more that can be done? But just chemo that can buy you a few months of time? Anyone have any knowledge or experience otherwise?0 -
NeulastaRribbit said:Hi Kelly and all - My name is Paige and I'm 38. I was diagnosed Jan. 09 after hysterectomy for fibroids. Unfortunately - due to the surgery plan we had for fibroids, they left in my ovaries, tubes and of course nodes, not knowing the cancer was there. Initially they thought I was 1C with about 65% myometrial invasion and grade 3 hybrid histologic type of large cell/neuroendocrine(small cell) cancer. But I had a PET scan in March that revealed spread to 1 pelvic, 1 paraaortic and 1 portal lymph node (still can't figure out exactly where that is, but have been told it's up high behind the liver). So they now consider me stage 3C at a minimum and probably stage 4. All other organs are clear thus far. Started Cisplatin/Etoposide chemo in Feb and just finished 3rd round last week w/3 rounds to go. Will repeat the PET scan next week to see if chemo is working and determine next steps for radiation. Plan is for full abdominal radiation for 6 weeks in the middle of chemo. However I am scared about the long-term side effects I see some of you having from this
Drs believe my portal node is a metastasis because it measures 3 cm. I am told that the portal node would be a highly risky surgery to do to go in and remove and also near impossible to radiate so chemo is the primary hope to reduce/eliminate it.
So far my only side effects have been low white blood counts and random chest heaviness. Kelly did the Neulasta work for you? did you have any side effects from it? My Dr told me it might not work as well for me since I'm doing 3 days in a row every 3 weeks and it works better for 1 day plans....but I don't want to delay treatment. Apparently the neuroendocrine part of my cancer typically recurs within 2 years, so I'm willing to blow a nuke bomb off in my body if it will help prevent recurrance! From what I understand, once it recurs - there's not much more that can be done? But just chemo that can buy you a few months of time? Anyone have any knowledge or experience otherwise?
Hi Paige I am sorry for the delayed response I have been away from a computer for a few weeks. The Neulasta frequently couldn't get me up to par. I had several delays in treatment and was very frustrated. After the Neulasta I had bone pain in all of my large bones about 12 hours after the injection that lasted for about 3 days. My doc had given me a prescription for the pain that worked just grand and I was able to accomplish all of my daily activities. After I started drinking Echinacea tea by Yogi I noticed my ANC go up and between the Neulasta and the tea was able to get back on track. I would ask your doc if you can drink Echinacea tea just to be on safe side but it appeared to help me. I totally understand your thinking about nuking the bugger into oblivion...that will be my prayer for you:) Take good care of yourself.
Big Hugs Kelly0 -
again concerns over my mom- nurse lisa and those with thisnursey420 said:My Name is Lisa
Hi everyone My name is Lisa I am a RN in the state of Minnesota. I was diagnosed on Jan 20 2009. Had total hyst on Feb 22 via Divinci robot. The cancer was 69% thru the wall and into my cervix. Lymph nodes and washing negitive. I am stage 2B. Started external beam radiaiton on 3/23 and will have internal HDR after the external is completed.I need 25 session of external and 4 session of internal. So every morning I get up and go to radiaiton. I was very happy to find this site as I felt that no one knew what I was going thru. There are support groups in my area for every cancer but mine.
I know you have responded in the past, but I am still anxious and I think you have about the same as my mom--Grade 1 stage 1C or 2B depending on which path report I look at and plus or minus lymphovascular invasion. Neg pelvic nodes and washings but only six pelvic lymph nodes taken. My concern is still that some are recommending just brachtherapy and some both. One plan was 27 txs of IMRT and two brachy so 4800 dose of rad plus brachy to add to 6000 as I understood it. My mom has started with this but I again am worried she will have bad complications like fistulas or small bowel problems and even though she is otherwise healthy(still working) very social she is 71 yo. These different recommendations come even as a difference within the rad. oncs and even between gyne oncs. I do not want a complication nor recurrence but it sounds like pelvic rad can give up to 5-15% complication rate. any advice?? my mom will be compliant and just feels frustrated and worried which is not helping her recovery and she was up post op day 1 and home after the robotic-- told all was well and then got the news two weeks later that the path report was more invasive which caused a frenzy of us getting other thoughts and opinions which takes a lot of time which cuts into your treatment and makes you jump to a decision. thanks bonnie0 -
Bonniebonniesue said:again concerns over my mom- nurse lisa and those with this
I know you have responded in the past, but I am still anxious and I think you have about the same as my mom--Grade 1 stage 1C or 2B depending on which path report I look at and plus or minus lymphovascular invasion. Neg pelvic nodes and washings but only six pelvic lymph nodes taken. My concern is still that some are recommending just brachtherapy and some both. One plan was 27 txs of IMRT and two brachy so 4800 dose of rad plus brachy to add to 6000 as I understood it. My mom has started with this but I again am worried she will have bad complications like fistulas or small bowel problems and even though she is otherwise healthy(still working) very social she is 71 yo. These different recommendations come even as a difference within the rad. oncs and even between gyne oncs. I do not want a complication nor recurrence but it sounds like pelvic rad can give up to 5-15% complication rate. any advice?? my mom will be compliant and just feels frustrated and worried which is not helping her recovery and she was up post op day 1 and home after the robotic-- told all was well and then got the news two weeks later that the path report was more invasive which caused a frenzy of us getting other thoughts and opinions which takes a lot of time which cuts into your treatment and makes you jump to a decision. thanks bonnie
I am grade 3a UPSC and not an expert on anything medical. I have been reading the stories of the UPSC sisters and wonder why my doc is not recommending radiation like most others. He is a very reputable doc - gyn/onc - in the field and I have decided that I need to trust him. I questioned him and he said he did not see any evidence that I need it (radiation). I have to admit that I am ambivalent - on the one hand relieved but the other concerned that I am "undertreated". When I questioned about recurrence he reminded me that I have a 60% change of NOT having a recurrence. I decided to trust his judgement.
So, to you I say, get educated here and by your doctors and get a second opinion and then decide the best course to take and trust your doctor. It sounds like there is no exact science, but there are protocols. I have checked the NCCN website for the protocol on UPSC. You can check that too and see if your doc's advice is within these standards.
For what it's worth.... and God Bless you and your mom.
Mary Ann0 -
Mary Ann, San Francisco Bay, UPSC recurrent
Mary Ann, UPSC, diagnosed February 2006. IIIa I think. Anyway III. Nothing in lymph nodes, a few rare cells in the wash. Surgery at California Pacific Medical Center, SF. Chemo at San Franisco Oncology, which has offices adjacent to CPMC. Carboplatin and taxol, Summer 2006, ending Sept 15, 2006. Hair presentable in December 2006. Recurrence discovered July 2008. Node found in omentum during surgery and nodes on base of lungs during CT scan. Smaller doses of taxol and carboplatin due to kidney problems. December 2008 through March 17, 2009. Due to start topotecan, used for recurrent cancer, about the end of May 2009, once a week. Never any discomfort from the disease itself, discomfort comes from treatment and kidney problem treatment. 73 years old. Never had radiation. retired. My friend in the picture is Lobo. You can call me Mary Ann on San Francisco Bay, or Mary Ann On The Bay, or Mary Ann SF (shorter) or anything to distinguish me from early member Mary Ann/Daisy.0 -
Thanks for sharing MaryAnnSFMaryAnnOnTheBay said:Mary Ann, San Francisco Bay, UPSC recurrent
Mary Ann, UPSC, diagnosed February 2006. IIIa I think. Anyway III. Nothing in lymph nodes, a few rare cells in the wash. Surgery at California Pacific Medical Center, SF. Chemo at San Franisco Oncology, which has offices adjacent to CPMC. Carboplatin and taxol, Summer 2006, ending Sept 15, 2006. Hair presentable in December 2006. Recurrence discovered July 2008. Node found in omentum during surgery and nodes on base of lungs during CT scan. Smaller doses of taxol and carboplatin due to kidney problems. December 2008 through March 17, 2009. Due to start topotecan, used for recurrent cancer, about the end of May 2009, once a week. Never any discomfort from the disease itself, discomfort comes from treatment and kidney problem treatment. 73 years old. Never had radiation. retired. My friend in the picture is Lobo. You can call me Mary Ann on San Francisco Bay, or Mary Ann On The Bay, or Mary Ann SF (shorter) or anything to distinguish me from early member Mary Ann/Daisy.
I appreciate hearing your history. I looked up the topotecan. I see it has been used for ovarian and small cell lung cancer treatments. Will you be taking it as a pill, or are they giving it IV? I pray for success for you. You said they found a node in the omentum during surgery in July. What kind of surgery did you have then? I hope your kidneys tolerate this new medication. Lobo looks like a great friend. HUGS to you.0 -
No topotecanRo10 said:Thanks for sharing MaryAnnSF
I appreciate hearing your history. I looked up the topotecan. I see it has been used for ovarian and small cell lung cancer treatments. Will you be taking it as a pill, or are they giving it IV? I pray for success for you. You said they found a node in the omentum during surgery in July. What kind of surgery did you have then? I hope your kidneys tolerate this new medication. Lobo looks like a great friend. HUGS to you.
No topotecan. More Taxol/carboplatin. I'll postthat soon. Two surgeries in July, one to fix my right uterer (between kidney and bladder) and then surgery to unkink my intestine when it became kinked after the first surgery. Nodule found during second surgery and tested. But kidney function seems ok now. Mary Ann on San Francisco Bay0 -
UPSC roll call
Aloha Marie Boyer diagnosed 5/08 with Stage 1A UPSC; 8 cycles of Carbo/Taxol; no radiation; of course complete hysterectomy; coming up to my second 3 month check up in June at Kapiolani Med Center for Women and Children, Honolulu; anxiety starting to build; almost burst into rears yesterday making arrangements with insurance company for transportation to Oahu from the Big Island where I live; thanks for all of you; I read posts almost daily and know I'm not alone in this journey; wish I could offer some "support" more frequently but I feel a reluctance to add my two cents sometimes; probably because I'm a nurse and feel there is SOOOO much conflicting information out there; I don't want to add to the confusion; really want to settle into my individual personna for awhile yet. THANKS to all of you for sharing.0 -
My name is Jeannursey420 said:My Name is Lisa
Hi everyone My name is Lisa I am a RN in the state of Minnesota. I was diagnosed on Jan 20 2009. Had total hyst on Feb 22 via Divinci robot. The cancer was 69% thru the wall and into my cervix. Lymph nodes and washing negitive. I am stage 2B. Started external beam radiaiton on 3/23 and will have internal HDR after the external is completed.I need 25 session of external and 4 session of internal. So every morning I get up and go to radiaiton. I was very happy to find this site as I felt that no one knew what I was going thru. There are support groups in my area for every cancer but mine.
Hi my name is Jean and I live in Colorado. In December 2008 I was diagnosed with clear cell uterine cancer. I am Stage 2B and Grade 3. My doctor removed 54 lymph nodes and they were all negative along with the washings. I had a total hysterectomy in January with the DaVinci robot. Two weeks later I developed an infection and was hospitalized for 2 weeks. I was out of work for 2 months due to another infection after the first infection cleared up. I just finished with 25 external radiation treatments and 3 internal treatments. May 18th was my final treatment. I have a follow up appt. on June 16th. I have been visiting this site for weeks, but never wrote my own post. I see how everyone is so supportive of each other and thought that I would give it a try. It seems like you have been through so much and I wish the best for all of you.0 -
Welcome Jean!bella09 said:My name is Jean
Hi my name is Jean and I live in Colorado. In December 2008 I was diagnosed with clear cell uterine cancer. I am Stage 2B and Grade 3. My doctor removed 54 lymph nodes and they were all negative along with the washings. I had a total hysterectomy in January with the DaVinci robot. Two weeks later I developed an infection and was hospitalized for 2 weeks. I was out of work for 2 months due to another infection after the first infection cleared up. I just finished with 25 external radiation treatments and 3 internal treatments. May 18th was my final treatment. I have a follow up appt. on June 16th. I have been visiting this site for weeks, but never wrote my own post. I see how everyone is so supportive of each other and thought that I would give it a try. It seems like you have been through so much and I wish the best for all of you.
It seems like you have had a rough time with your recovery. Hopefully you are on the mend now. Do you have to have chemo?
Just wanted to welcome you to the site. There are a lot a great ladies on here.0 -
Welcome, Jean!
As sad as the reason for our 'sisterhood' here is, we still warmly welcome you to the support and friendship of this community! Please tell us more about what precipitated the infections and if you will be having further treatments, and anything else you care to share! BIG HUGS!0 -
Jean welcome to our groupbella09 said:My name is Jean
Hi my name is Jean and I live in Colorado. In December 2008 I was diagnosed with clear cell uterine cancer. I am Stage 2B and Grade 3. My doctor removed 54 lymph nodes and they were all negative along with the washings. I had a total hysterectomy in January with the DaVinci robot. Two weeks later I developed an infection and was hospitalized for 2 weeks. I was out of work for 2 months due to another infection after the first infection cleared up. I just finished with 25 external radiation treatments and 3 internal treatments. May 18th was my final treatment. I have a follow up appt. on June 16th. I have been visiting this site for weeks, but never wrote my own post. I see how everyone is so supportive of each other and thought that I would give it a try. It seems like you have been through so much and I wish the best for all of you.
Sorry you have to join our discussion board because of your diagnosis. Sorry to hear about all your problems after your hysterectomy. I too had the DaVinci robot surgery in January. Luckily I did not have any problems after the surgery. I was only in the hospital overnight after the surgery. Glad you made it through you radiation treatments. May 18th was also my final external radiation treatment. I will go into the hospital on Tuesday to have my internal radiation treatment. Don't know yet how long they will leave the implant in place. I will find that out on Tuesday. Hope you are feeling better and getting stronger. Hope to hear more about you.0 -
Thank you for the welcome.deanna14 said:Welcome Jean!
It seems like you have had a rough time with your recovery. Hopefully you are on the mend now. Do you have to have chemo?
Just wanted to welcome you to the site. There are a lot a great ladies on here.
Thank you for the welcome.
I am thankful to have this site. It is difficult to talk to others. It seems like they don't understand. I look forward to visiting this site often.
I did not have to have chemo only radiation. My doctor told me that it was my decision about the chemo and that he didn't want me to regret anything down the road. It was his recommendation that I only needed radiation. All of you that have had chemo are very strong and have been through a lot. I hope all goes well for all of you.0 -
Roll Call
Hi. My name is Shelly. I was diagnosed with stage 1B uterine cancer in Jan 09 and had a abdominal hysterectomy also removing lymph nodes and ovaries in Feb. 09 @ Hoag, Newport Bch, CA. Currently in the 3rd month of chemo (carbo/taxol) 3 times a month for six months and once a month 9 months after. I am also having to get both shots for red blood cells and white blood cells. (sorry I forgot what their names are)
I have had 2 bladder infections so far and am not getting very much sleep. Most nights I wake up every 1 to 1 1/2 hours. I am very tired all the time and am not sure what is due to the chemo. After trying to treat the bladder problem my oncologist has requested a referral to a urologist but OMG they are hard people to get to see!
My family and friends are very supportive but I am really getting tired of being tired all the time! Has anyone else had this problem and what did you do?
Thanks!0 -
I can relateAuntie Shelly said:Roll Call
Hi. My name is Shelly. I was diagnosed with stage 1B uterine cancer in Jan 09 and had a abdominal hysterectomy also removing lymph nodes and ovaries in Feb. 09 @ Hoag, Newport Bch, CA. Currently in the 3rd month of chemo (carbo/taxol) 3 times a month for six months and once a month 9 months after. I am also having to get both shots for red blood cells and white blood cells. (sorry I forgot what their names are)
I have had 2 bladder infections so far and am not getting very much sleep. Most nights I wake up every 1 to 1 1/2 hours. I am very tired all the time and am not sure what is due to the chemo. After trying to treat the bladder problem my oncologist has requested a referral to a urologist but OMG they are hard people to get to see!
My family and friends are very supportive but I am really getting tired of being tired all the time! Has anyone else had this problem and what did you do?
Thanks!
I can relate to the up every 1 to 1.5 hours during the night. I have nights like that and have had a couple UTI's. It usually turns out that I have a UTI when I get up that many times during the night. I also have had radiation and am being told that I have decreased bladder capacity as a side effect of the radiation. I just take a lot of naps when I feel tired.
That sounds like a pretty tough chemo regime. What cell type of cancer did you have? A lot of us here were diagnosed uterine papillary serous carcinoma. I would imagine that you are very tired if you are receiving carbo/taxol 3 times a month. I am getting ready to have my 6th and last carbo/taxol treatment. Mine were every 21 days, but I have had a couple of postponements due to low blood counts.
I have a lot of days when I am tired of being tired. Like I said, I rest when my body tells me to rest and sometime, if there are things I want to do, I push through it. Good luck and God bless you.0 -
Thanksdeanna14 said:I can relate
I can relate to the up every 1 to 1.5 hours during the night. I have nights like that and have had a couple UTI's. It usually turns out that I have a UTI when I get up that many times during the night. I also have had radiation and am being told that I have decreased bladder capacity as a side effect of the radiation. I just take a lot of naps when I feel tired.
That sounds like a pretty tough chemo regime. What cell type of cancer did you have? A lot of us here were diagnosed uterine papillary serous carcinoma. I would imagine that you are very tired if you are receiving carbo/taxol 3 times a month. I am getting ready to have my 6th and last carbo/taxol treatment. Mine were every 21 days, but I have had a couple of postponements due to low blood counts.
I have a lot of days when I am tired of being tired. Like I said, I rest when my body tells me to rest and sometime, if there are things I want to do, I push through it. Good luck and God bless you.
I try to take naps all the time but all the laying around is really taking a toll on my stamina! I try to get a lot of things done on Saturday, the day after chemo because of the steriod rush I get. I only get the carbo once a month but I have noticed that I feel worse after that round of treatment.
My pathology report says endometrial adenocarcinoma with serous features, FIGO grade 3, nuclear grade 3.
Thanks for the reply. I have really been getting down lately and it helps to know someone else can relate!
* Thanks to the nurses and hospital staff @ Hoag. You guys are awesome!0 -
Welcome, Aunt Shelly!
The Grade 3 cells probably accounts for the aggressive chemo schedule, but how wonderful that you caught your cancer when it was still in Stage 1! I imagine they are being so aggressive because you have such an excellent opportunity for a cure, and your oncologists are determined to make that happen. I had my chemo (Carbo/taxol) like Deanna's, every 3 weeks. Sounds like they are 'fractionating' your 1 chemo drug (giving 1/3 dose every week instead of full dose every 3 weeks) to ease its affect on your body by spreading it out. I met a few women with breast cancer where they used that strategy.
I just got back from radiation, and just had my 17th of 28 scheduled rounds of external pelvic IMRT radiation. I went out for pancakes and an omelette after treatment and made the mistake of having chopped tomatoes in my cheese omelette, which I KNOW I shouldn't have. Now I'll have to stay in the next few hours close to a toilet, as any fresh veggies are giving me loose bowels at this stage in my radiation. But the upset stomach never seems to affect my appetite!
Hang in there, ladies! A 3-day weekend & even an extra day off of treatment! Enjoy!0 -
Hi there!
My name is Jen, I was just recently diagnosed with Uterine Cancer. I don't know all the terminology just yet. I know that is a grade 1, stage I won't know til after my surgery which is next week the 27th. I am having tubes, lymph nodes, ovaries, tubes and uterus removed. I guess that is a total? This is such a blur to me and a shock. I have been through so much the past two weeks. From finding out my insurance stinks and won't cover anything to family members that I have not talked to in over 15 years coming out of the woodwork because I'm sick. I'm only 34. I had Hyperplasia in the pre-cancer stage only 2 months prior to this diagnosis.
I going with the DaVinci surgery and looking forward to it. I hope I'm not in much pain and what not.
I'm really lost with all this stuff, lol0 -
welcome Jenjen2swt said:Hi there!
My name is Jen, I was just recently diagnosed with Uterine Cancer. I don't know all the terminology just yet. I know that is a grade 1, stage I won't know til after my surgery which is next week the 27th. I am having tubes, lymph nodes, ovaries, tubes and uterus removed. I guess that is a total? This is such a blur to me and a shock. I have been through so much the past two weeks. From finding out my insurance stinks and won't cover anything to family members that I have not talked to in over 15 years coming out of the woodwork because I'm sick. I'm only 34. I had Hyperplasia in the pre-cancer stage only 2 months prior to this diagnosis.
I going with the DaVinci surgery and looking forward to it. I hope I'm not in much pain and what not.
I'm really lost with all this stuff, lol
Welcome Jen
I have stage 2b endrometral cancer with total hys via DaVinic robot 2/20/09. The recovery was good some pain but mostly at the stab sites. Much faster recovery than expcted. I have had 25 external radaition (IMRT) and 4 internal (HDR). I will be going back to work on Tuesday.
Best thing to do is start a book for all of your records and appointments this help keep track of every thing and is a good place to keep every thing together. Keep us updated. I find this site very helpful and comforting. We where lost once too but now we are almost found
Lisa0
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