Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatm

jen2swt

nursey420 said:

welcome Jen
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
Lisa

Hi Lisa
You have been out of
Hi Lisa
You have been out of work since February? Is that because of the treatments? You can't work during that time? I right now have taken off 6 weeks...Just curious if it will be more if I need treatments.

Ro10

Auntie 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!

Welcome Shelly
Sorry to hear you are so tired all of the time. You really are on a different chemo schedule than most of us have been on. Most of us have received our chemo every 21 days if the blood work is okay. I am one of those who had 3 chemo treatments and then radiation and then will finish with 3 more chemo treatments. I will have my internal radiation on Tuesday.

Sorry to hear about your bladder infections, too. That is miserable when you can't get good rest at night. Have you tried drinking cranberry juice? that is supposed to make the urine more acid to reduce the chance of infections. I am sure the urologist will have some "magic" pills to make you feel better.

Glad to hear you have a supportive family and group of friends. Hope you find this site helpful too. Good luck with your treatments.

Ro10

jen2swt 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 too had my total hysterectomy by Davinci in January. The recovery period was very good. I was only in the hospital overnight. Minimal pain afterwards. I never had to take any pain medicine. My biggest discomfort was the bloating afterwards. They inflate the abdomen with gas, so they can see the organs. My surgery was 6 hours long, so I guess they used a lot of gas. It took weeks to get rid of the bloating.
I had an abnormal pap test and thought I would only need surgery to take care of the problem. I was shocked to find out I had Stage III-C UPSC. I have had 3 chemo treatments, my 28 external radiation treatments. I will have internal radiation next Tuesday. And then I will have 3 more chemo treatments. Hope you family becomes a support for you, rather than a headache.
Good luck with your surgery.

Auntie Shelly

Ro10 said:

Welcome Shelly
Sorry to hear you are so tired all of the time. You really are on a different chemo schedule than most of us have been on. Most of us have received our chemo every 21 days if the blood work is okay. I am one of those who had 3 chemo treatments and then radiation and then will finish with 3 more chemo treatments. I will have my internal radiation on Tuesday.

Sorry to hear about your bladder infections, too. That is miserable when you can't get good rest at night. Have you tried drinking cranberry juice? that is supposed to make the urine more acid to reduce the chance of infections. I am sure the urologist will have some "magic" pills to make you feel better.

Glad to hear you have a supportive family and group of friends. Hope you find this site helpful too. Good luck with your treatments.

Thanks for the welcomes!
I had my third chemo treatment of the third month today and was so exhausted. It helped to go to the chemo lounge and get to compare notes with my fellow "loungers". A lot of them are on different treatment schedules than I am too. Today I was told that I may need a blood transfusion. I guess that may explain some of the exhaustion but I am kind of nervous about it.

I bought some cranberry pills to take and am now on the sixth medication for the UTI. The meds have been helping but I am still getting up all the time most nights. I hope this last one works.

It really helps to have people to communicate with. I really appreciate the comments.

Good luck to everyone!

* thanks to Karen, my chemo nurse who has to listen to all my complaining!

nursey420

jen2swt said:

Hi Lisa
You have been out of
Hi Lisa
You have been out of work since February? Is that because of the treatments? You can't work during that time? I right now have taken off 6 weeks...Just curious if it will be more if I need treatments.

I have been out of work
I have been out of work since 1/30 I was to have a simply hyst on 2/4 but the biopise came back cancer so had to see oncoligist. Had surgery at end of Feb due to the docotors schedule. I am a RN medical case manager for a work comp insurance company and my case where given away so did a lot of resting an house cleaing for the first month. I had daily radiation for 5 weks and my doctor wanted me to just rest. After the external i had the internal ones that ended 2 weeks ago and the doctor wanted me to rest for a month but convinced them to let me go back in 2 weeks. I have very good disabilty insurance. My doctors beleive that rest is the best. I was very tired and still get tired by end of the day but it is much better now. Best thing is to talk to the doctors they really know best.

jen2swt

nursey420 said:

I have been out of work
I have been out of work since 1/30 I was to have a simply hyst on 2/4 but the biopise came back cancer so had to see oncoligist. Had surgery at end of Feb due to the docotors schedule. I am a RN medical case manager for a work comp insurance company and my case where given away so did a lot of resting an house cleaing for the first month. I had daily radiation for 5 weks and my doctor wanted me to just rest. After the external i had the internal ones that ended 2 weeks ago and the doctor wanted me to rest for a month but convinced them to let me go back in 2 weeks. I have very good disabilty insurance. My doctors beleive that rest is the best. I was very tired and still get tired by end of the day but it is much better now. Best thing is to talk to the doctors they really know best.

Out of work
Wow, that's a long time to be out of work. I'm hoping that I don't need any treatments. I'm keeping my fingers crossed. I can't imagine being out of work for that long because I'm not getting paid. I have no Short or Long Term Disability. I will def keep ya updated on how things go.

woofgang

April Newbie overcome by Chemo Fatigue Finally signing in
Hi,I'm Sharon, and you can see more details about my situation on my profile. I've been lurking, but just didn't have the energy to get with it and sign in, not to mention I've not blogged much and was afraid I would do it wrong and drive everyone nuts.... But I'm a stage IIIc, with papillary serous and clear cell features. My situation sounds alot lot Deanna's. I had surgery 12/31/2008 and just finished my 6th chemo May 20. Next is the radiation, and I can't tell you how much you've all helped sharing your radiation experiences. There are alot of angels on this blog and you've all really inspired me.

Reddie

woofgang said:

April Newbie overcome by Chemo Fatigue Finally signing in
Hi,I'm Sharon, and you can see more details about my situation on my profile. I've been lurking, but just didn't have the energy to get with it and sign in, not to mention I've not blogged much and was afraid I would do it wrong and drive everyone nuts.... But I'm a stage IIIc, with papillary serous and clear cell features. My situation sounds alot lot Deanna's. I had surgery 12/31/2008 and just finished my 6th chemo May 20. Next is the radiation, and I can't tell you how much you've all helped sharing your radiation experiences. There are alot of angels on this blog and you've all really inspired me.

Hello Everyone! my name is Brenda but call me Reddie
Before surgery I was diagnosis Grade 1 endometrial carcinoma in Philadelphia last March, 2009. I had laparoscoptic total abdominal hysterectomy with bilateral salpingo-oophorectomy, bilateral pelvic and common iliac and para-aortic lymphadenectomy. I'm not sure what that means but I know that I had laparoscoptic hysterectomy while they remove my uterus, tubes, ovaries and lymph nodes thru the vagina. I never had children so I wasn't ready to have hysterectomy but I realized it's better to have hysterectomy before the cancer spreads. After operation they discovered that I have Grade 1 endometrial carcinoma with multiple metastatic pelvic and probable aortic nodes (stage III C) I had cancer 80 % thru the wall of my uterus which is why I have lymph nodes disease. Will have pet scan to check for tumor on my chest/neck area at Fox Chase Cancer Center in Philadelphia soon. They recommended me to have chemotherapy (Cisplatin/Doxorubicin)in June/July. Does anyone experience with Doxorubicin? I have profound hearing loss from birth that I wear hearing aids on both ears and I'm concern if I take Cisplatin will my hearing get worse? I still have less sleep at night and still go to bathroom every 2 or 3 hours at the most. I know it's frustrating but I have to stay positive and keep on living! hugs Reddie

lociee

Hi Linda, I've been very
Hi Linda, I've been very sporatic using this site. When I'm freaking out I go to look for info. You are always well informed and that got me to ask more questions about my cancer and treatment.
My real name is Mia, I live in the Boston area and teach high school in Boston. I was diagnosed a few years ago with uterine cancer and had a total hysterectomy. (2006) I was cleared after that, but continued having pelvic pain. Every few months I would go to the doc and complain - they said I was okay. Then this past summer I could not do anything - constant pain! Finally they located the problem - I have a tumor in my pelvis that runs along the outside of my colon - and pushes the colon in - also have a tumor on my tail bone - which is imbedded in my nerves (hence all the pain). Also.... a tumor in my lung (biopsy says that is also uterine cancer. So it's traveling!
Treatment: Had 6 rounds of carbol/pacil starting in October. It worked well for awhile - then was no longer effective. They talked about surgery, but felt they would not be able to get it all. So..radiation. Just finished 25 treatments to pelvis - and 6 coned in treatments to the tail bone, as a possible pain reduction. The plan is that the radiation will shrink things enough so that chemo will work again. My oncologist says there will be no cure - so this is all palliative care.
Anyway, my entire **** and down my legs are in constant pain. Is that from radiation??? It does not mention that as a side effect. I don't know if it's tumor pain or radiation pain - and that makes me very anxious for some reason. Has the tumor already grown - or is this radiation???

lociee

jen2swt said:

Hi Lisa
You have been out of
Hi Lisa
You have been out of work since February? Is that because of the treatments? You can't work during that time? I right now have taken off 6 weeks...Just curious if it will be more if I need treatments.

Hi Lisa, I took 6 weeks off
Hi Lisa, I took 6 weeks off for surgery - but worked full time during chemo and radiation. I actually enjoying working, even though I did feel a little burnt out at times - it was worth it - it kept my mind off the constant "I have CANCER" freak-out.

lindaprocopio

I wish I knew for sure if radiation could cause that pain.
My radiation has been to the pelvis and the internal radiation that I will have next will be inserted vaginally. So I really don't know if your internal radiation could cause that kind of pain down your legs like that. But I can tell you that I have NO radiation-generated pain of any kind. I will do some research and see what I can find out for you. It probably doesn't mean the tumor is growing, and is more likely just that the nerves are irritated by the treatments. BIG HUG. Be sure and talk with your oncologist about this; he may have something he can give you.

lociee

lindaprocopio said:

I wish I knew for sure if radiation could cause that pain.
My radiation has been to the pelvis and the internal radiation that I will have next will be inserted vaginally. So I really don't know if your internal radiation could cause that kind of pain down your legs like that. But I can tell you that I have NO radiation-generated pain of any kind. I will do some research and see what I can find out for you. It probably doesn't mean the tumor is growing, and is more likely just that the nerves are irritated by the treatments. BIG HUG. Be sure and talk with your oncologist about this; he may have something he can give you.

Thanks Linda, you are a
Thanks Linda, you are a wealth of information. The pain is very similar to the pain I had going into radiation - so maybe it's part of the original problem. However, irritated nerves sounds right. There are clumps of nerves around the tail bone - and that's where they have pinpointed the radiation for the past week. I will call my oncologist tomorrow. That internal radiation sounds scary - but it seems that others on this site get through it okay. Isn't it amazing what we get used to!

desertflower

lindaprocopio said:

I wish I knew for sure if radiation could cause that pain.
My radiation has been to the pelvis and the internal radiation that I will have next will be inserted vaginally. So I really don't know if your internal radiation could cause that kind of pain down your legs like that. But I can tell you that I have NO radiation-generated pain of any kind. I will do some research and see what I can find out for you. It probably doesn't mean the tumor is growing, and is more likely just that the nerves are irritated by the treatments. BIG HUG. Be sure and talk with your oncologist about this; he may have something he can give you.

Pre-hyst Fearing the worst
Set up for a hyst on July 14 and looking for another doc to do the Da Vinci instead. Back in Sept 07 had an endometrial biopsy showing negative for cancer and had fallopian tube taken due to cyst/infection. While in surgery doc took lots of pictures all looking good but said she thought I had fibriods, to keep check on it. Well, I got laid off after recovery in December and finally got employed last July. After getting caught up on a lot of back bills I finally got another sonogram (wasn't big on my list as it wasn't causing problems) showing a huge tumor in uterus. Doc set up for surgery now did an in office sonogram and it was round like the moon and had white on it - he said 99% chance it is not cancer but a calcified fibriod. I'm definitely going to get a hyst but trying to be pro-active and get myself ready for worst case scenario should I get positive biopsy for cancer. I'm in fear as I am having other symptoms like lymph nodes doing roll call/pain hoping it is something else. Hearing you guys going through what you are puts a human face on a tragic but survivable disease - thanks for sharing your stories.

lindaprocopio

Welcome, Desertflower! Try not to worry.
If there's one thing I've learned by this cancer experience, it's that 'borrowing trouble' by trying to anticipate every possible contingency will only exhaust and distress you. So please try not to let your imagination go wild, peeking around every corner ahead of time. Your symptoms and test results so far don't sound like cancer to me, at least not the scary aggressive UPSC kind that I have, which is a cancer with NO symptoms and NO pain. And bleeding and swelling would be the symptoms I would expect for the more common type of highly-curable uterine cancer. So, deep breath! (When you see all of my cancer research on this Board, you will be tempted to shoot back that I should 'practice what I preach', but I have always been insatiably curious and research-oriented about every interesting thing that captures my imagination, and now "cancer" is on that list! I've always been that way, and perhaps we are kindred spirits in that regard. You wouldn't believe all the useless information in my head on a million different topics!)

And if it turns out that it is cancer, we're here for you. If you get the cancer diagnosis, THEN you'll want to be very pro-active, informed and prepared for each step of the journey. But for now, pre-diagnosis, 'ignorance is bliss', so try not to make yourself crazy just yet. BIG HUGS! We all know how scary this is!

shortmarge

lindaprocopio said:

Welcome, Desertflower! Try not to worry.
If there's one thing I've learned by this cancer experience, it's that 'borrowing trouble' by trying to anticipate every possible contingency will only exhaust and distress you. So please try not to let your imagination go wild, peeking around every corner ahead of time. Your symptoms and test results so far don't sound like cancer to me, at least not the scary aggressive UPSC kind that I have, which is a cancer with NO symptoms and NO pain. And bleeding and swelling would be the symptoms I would expect for the more common type of highly-curable uterine cancer. So, deep breath! (When you see all of my cancer research on this Board, you will be tempted to shoot back that I should 'practice what I preach', but I have always been insatiably curious and research-oriented about every interesting thing that captures my imagination, and now "cancer" is on that list! I've always been that way, and perhaps we are kindred spirits in that regard. You wouldn't believe all the useless information in my head on a million different topics!)

And if it turns out that it is cancer, we're here for you. If you get the cancer diagnosis, THEN you'll want to be very pro-active, informed and prepared for each step of the journey. But for now, pre-diagnosis, 'ignorance is bliss', so try not to make yourself crazy just yet. BIG HUGS! We all know how scary this is!

Hugs to all our newcomers.
Hugs to all our newcomers. There are bunch of wonderful women on this board, much support and love.

MIND, BODY AND SOUL!

Hugs.

Ro10

desertflower said:

Pre-hyst Fearing the worst
Set up for a hyst on July 14 and looking for another doc to do the Da Vinci instead. Back in Sept 07 had an endometrial biopsy showing negative for cancer and had fallopian tube taken due to cyst/infection. While in surgery doc took lots of pictures all looking good but said she thought I had fibriods, to keep check on it. Well, I got laid off after recovery in December and finally got employed last July. After getting caught up on a lot of back bills I finally got another sonogram (wasn't big on my list as it wasn't causing problems) showing a huge tumor in uterus. Doc set up for surgery now did an in office sonogram and it was round like the moon and had white on it - he said 99% chance it is not cancer but a calcified fibriod. I'm definitely going to get a hyst but trying to be pro-active and get myself ready for worst case scenario should I get positive biopsy for cancer. I'm in fear as I am having other symptoms like lymph nodes doing roll call/pain hoping it is something else. Hearing you guys going through what you are puts a human face on a tragic but survivable disease - thanks for sharing your stories.

Welcome Desertflower
I love your on-line name. It brings a smile to my face when I read it. Hope all goes well with your hysterectomy. I know it is hard to not worry about the unknown. But like Linda said most of us had no symptoms. Try to be positive, and have cross that "cancer-bridge" when you know for sure. Good luck to you. I hope you get good results after the surgery. If you don't we are here for you. HUGS to you.

rmcosu

shortmarge said:

Hugs to all our newcomers.
Hugs to all our newcomers. There are bunch of wonderful women on this board, much support and love.

MIND, BODY AND SOUL!

Hugs.

Regan.... 32... Cleveland, Ohio... Grade 1A endometrial cancer.... Megace hormone treatment.... repeat biopsy on August 21, 2009.

Pat from MN

lindaprocopio said:

Welcome, Desertflower! Try not to worry.
If there's one thing I've learned by this cancer experience, it's that 'borrowing trouble' by trying to anticipate every possible contingency will only exhaust and distress you. So please try not to let your imagination go wild, peeking around every corner ahead of time. Your symptoms and test results so far don't sound like cancer to me, at least not the scary aggressive UPSC kind that I have, which is a cancer with NO symptoms and NO pain. And bleeding and swelling would be the symptoms I would expect for the more common type of highly-curable uterine cancer. So, deep breath! (When you see all of my cancer research on this Board, you will be tempted to shoot back that I should 'practice what I preach', but I have always been insatiably curious and research-oriented about every interesting thing that captures my imagination, and now "cancer" is on that list! I've always been that way, and perhaps we are kindred spirits in that regard. You wouldn't believe all the useless information in my head on a million different topics!)

And if it turns out that it is cancer, we're here for you. If you get the cancer diagnosis, THEN you'll want to be very pro-active, informed and prepared for each step of the journey. But for now, pre-diagnosis, 'ignorance is bliss', so try not to make yourself crazy just yet. BIG HUGS! We all know how scary this is!

Roll Call
Hi, my name is Pat and I am from Minneapolis, MN. I was diagnosed with Breast Cancer in Oct 1998, had a lumpectomy and eventually, a bi-lateral mastectomy. I had 4 Chemo's and 5 years of Tamoxifin. Then, 10 years later in Oct 2008, I had stomach pain and they found a Fibroid. I had a Hysterectomy on Oct 15, 2008 to remove it. The pathology showed more cancer - this time it was UPSC. I had a second surgery on Dec 9, 2008 to take out the remainder of the Cervix, that had caused problems with the first surgery & lymph nodes (all negative). I have done 3 rounds of chemo - Taxol/Carboplatin, 25 external radiation & 4 brachy's. The plan was to have 3 more chemo's but you know what they say about well laid plans... More stomach pain so another PET CT showed more cancer by my liver. So, now, there will be more than 3 more chemo's to try to shrink it. It kind of makes you wonder what else can go wrong. But this site is a God Send. It is so good to hear from people who know what you are going through. Family and friends are great but they don't always understand your feelings.
Thank you all for being here.

deanna14

Pat from MN said:

Roll Call
Hi, my name is Pat and I am from Minneapolis, MN. I was diagnosed with Breast Cancer in Oct 1998, had a lumpectomy and eventually, a bi-lateral mastectomy. I had 4 Chemo's and 5 years of Tamoxifin. Then, 10 years later in Oct 2008, I had stomach pain and they found a Fibroid. I had a Hysterectomy on Oct 15, 2008 to remove it. The pathology showed more cancer - this time it was UPSC. I had a second surgery on Dec 9, 2008 to take out the remainder of the Cervix, that had caused problems with the first surgery & lymph nodes (all negative). I have done 3 rounds of chemo - Taxol/Carboplatin, 25 external radiation & 4 brachy's. The plan was to have 3 more chemo's but you know what they say about well laid plans... More stomach pain so another PET CT showed more cancer by my liver. So, now, there will be more than 3 more chemo's to try to shrink it. It kind of makes you wonder what else can go wrong. But this site is a God Send. It is so good to hear from people who know what you are going through. Family and friends are great but they don't always understand your feelings.
Thank you all for being here.

Welcome Pat from MN
Happy you found this discussion group. There are a lot of caring supportive peopled here. So sorry to hear of your diagnosis. Stay strong and fight this monster. We are all in this together. Hope you are feeling okay. Hugs.

Ro10

Pat from MN said:

Roll Call
Hi, my name is Pat and I am from Minneapolis, MN. I was diagnosed with Breast Cancer in Oct 1998, had a lumpectomy and eventually, a bi-lateral mastectomy. I had 4 Chemo's and 5 years of Tamoxifin. Then, 10 years later in Oct 2008, I had stomach pain and they found a Fibroid. I had a Hysterectomy on Oct 15, 2008 to remove it. The pathology showed more cancer - this time it was UPSC. I had a second surgery on Dec 9, 2008 to take out the remainder of the Cervix, that had caused problems with the first surgery & lymph nodes (all negative). I have done 3 rounds of chemo - Taxol/Carboplatin, 25 external radiation & 4 brachy's. The plan was to have 3 more chemo's but you know what they say about well laid plans... More stomach pain so another PET CT showed more cancer by my liver. So, now, there will be more than 3 more chemo's to try to shrink it. It kind of makes you wonder what else can go wrong. But this site is a God Send. It is so good to hear from people who know what you are going through. Family and friends are great but they don't always understand your feelings.
Thank you all for being here.

Sorry Pat from MN to hear your news
How difficult it must be for you since you have been through so much all ready. Sorry to hear about your diagnosis and the new tumor. I'll add you to my prayer list and hope that the treatment plan helps you. Hope you find this site helpful. HUGS to you.