Can we do a ROLL CALL with everyone posting their name, cancer diagnosis, & where they are in treatm
Comments
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HAD MINE 5 MONTHS AGO.danielleambr said:just got the word
I am not sure if I am replying to this right.. My name is Danielle I am a 30 year old single mother of four. I was diagnosed with uterine cancer and will have a hystrectomy (if i spelled it right) august 4th
HAD MINE 5 MONTHS AGO. RECOVERY WAS LONG BUT NOT TOO BAD. ARE THEY OPTING FOR RAD TREATMENTS WITH SURGERY OR SURGERY ALONE?0 -
Jenilene welcome to the siteJENILENE said:ROLL CALL
MY NAME IS JEN ILENE AND AM 30 YEARS OLD, DIAGNOSED WITH STAGE 1B UTERINE ADENOCARCINOMA. IM FROM SOUTH TEXAS, NOT A LOT OF SUPPORT GROUPS HERE. WAS DIAGNOSED OCT 16,2008 AND HAD TOTAL ABD HYSTERECTOMY AND RIGHT OVARY REMOVAL(PCD)AND BILATERAL FALLOPIAN TUBE REMOVAL(SEVERE ENDOMETRIOSIS)IN LATE JANUARY 2009. MY CA-125 CAME OUT ALITTLE HIGH AND FOUND POSSIBLE REOCCURANCE DURING HYSTOSCOPY LAST FRIDAY. NOW TRYING TO PREPARE FOR 4 WEEK ROUND OF EXT.RAD AND POSSIBLE SIDE EFFECTS. HOW BAD IS IT? IS THERE ANY SUPPORT SYSTEM SET UP FOR PEOPLE MY AGE? PLEASE CONTACT (JEN.ILENE.G@GMAIL.COM) OR ON THIS POST. THANKS
Sorry for you diagnosis but glad it is Stege 1 B. I had my 28 external radiaiton treatments and a 28 hours internal radiation treatment. I had minimal diarrhea from the treatments. I did have nausea from the radiation but I have a sensitive stomach. I only know one other person who had the nausea. The humiliation of having the radiation in the area you are having it was not as bad as anticipated either. The radiation people were very professional. I hope you have a good experience. Good luck with your treatments. Feel free to ask any questions. In peace and caring. HUGS to you.0 -
Mothers radiation treatmentbonniesue 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 agree the differences between gyn Onc and radiologists is very frustrating. My Gyn Onc (She seems very good and is married to a Gyn Onc) says that UPSC is best treated with chemo as this is very similar to ovarian papillary serous. She likes brachytherapy. I saw two radiologists. One also is against pelvic radiatio and wants to do five brachy which also targets the area of the uterus. One radiation recommended the traditional pelvic external beam and three brachy. I feel torn as I don't know what is best.0 -
Thank you, RO!Ro10 said:Kathy welcome to the site
Sorry to hear of your diagnosis, but glad you have only stage 1. Glad you will only have to have 3 cycles of the Taxol/carbo treatments. I can understand you being scared about the side effects. I think we all worried about them and found out they were not as bad as we had anticipated. The fear of the unknown always seems to be worse that what actually happens. They do such a good job with pre-medications and post medications that the side effects are minimal. Of course you won't really believe all of this until you go through it yourself. That's all natural. Sorry you have fears of being exposed to to patients coming in to see the doctor. I am an RN so I know what you mean. What about a Family Medical Leave, can you qualify for that while you get your chemo? Or any type of disability for that time period? You certainly have you hands full with your husband's diagnosis to. You will be added to my prayer list. Good luck with your treatment, and feel free to vent any frustrations or fears and ask all the questions you want. Someone will have some answers for you. In peace and caring. HUGS to you.
What a nice post you left. I'm not sure if I have ever met such a nice, caring group of women. I will heed all of your great advice. As far as a Family medical leave or disability; I am still off work from the surgery..1 month. And my GYN/ONC wants me to start the chemo soon. My office is very small; just 3 Docs with 3 nurses and no backup help. I work with a Doc that is somewhat narcissistic and he gets quite upset when I am off. It's a concierge practice, thus my worries about looking ill or someone noticing I have a wig on. But if it comes down to working or my health, I have decided I will not hesitate to take a leave. Your info about the pre and post meds I should know, as I sat through all of my husband's chemo. I guess when it's about "you" things are easily forgotten. Now that I realize there are many out there with lots of info to share, I am going to take advantage of all of your wisdom and caring. Thank you so much for all you wonderful women do on this site. Best to you also, RO.0 -
my Gyn is doing the surgery.kkstef said:So glad you connected....
Danielle
Am so sorry to hear about your diagnosis. Know you have a full plate with also having 4 children to care for. Am so glad you connected with this site. There are so many knowledgeable and caring women who are here to share info and support each other. Ask lots of questions. Are you having a gyn oncologist do your surgery?
Best to you! Karen
my Gyn is doing the surgery. I really trust her she delivered two of my children and one of those was by an emergancy c- cection and My son and I turned out fine then..She wanted to try to preform the surgery vaginaly but a friend of mine who is a gyn doc said she should just go through the c-cection scar to avoid any complications. I also know that on august 4th i will be on my period and I am such a heavy bleeder ( which started the symptoms) and have become anemic because of the heavy bleeding for a year and that scares me alot getting this done. I will be seeing an oncologist afterwords to make sure that they did get everything since it only seems to be in the lining of the uterus. I will see her the 27th for pre op but not sure what questions i need to ask since this is all so much. I am scared of surgery in general I guess the whole thing of dying while being but to sleep and not knowing anyone who has been through this. As for the treatment afterwords I am not worried I can get through that whatever it may end up being. thanks for replying to me it does make me feel better talking to those who have been through this0 -
thanks for the helpRo10 said:Jenilene welcome to the site
Sorry for you diagnosis but glad it is Stege 1 B. I had my 28 external radiaiton treatments and a 28 hours internal radiation treatment. I had minimal diarrhea from the treatments. I did have nausea from the radiation but I have a sensitive stomach. I only know one other person who had the nausea. The humiliation of having the radiation in the area you are having it was not as bad as anticipated either. The radiation people were very professional. I hope you have a good experience. Good luck with your treatments. Feel free to ask any questions. In peace and caring. HUGS to you.
thanks for responding and for your help. i heard rad is worse than chemo, and watched my grandmother struggle with her uterine cancer and continuous chemo treatments, so im kind of scared of how bad it really will be. i guess im really struggling with the fact that im going thru all this. its hard to talk to my fiancee or family about this. i feel like theyre being burdened. and the truth is, i think i'm taking this so hard because ive been isolating myself from everyone, trying to spare them and yet,trying not to feel so alone. i guess i just want everyone to come around and say that they are in it with me and not going anywhere, as opposed to the "if i dont see it it isnt really there" attitude people in south texas have, and my family especially. i tried to find support groups in my area and only found one. It was sponsored by a local hospital, but it was like going to a seminar on breast cancer awareness, which is okay but not what i need. im just tired from what i thought was 6 months of worry and doctors, but now seems never ending. is it just me and my bad coping skills that is making it this hard, or is it like this for everyone? i feel so overwhelmed lately, worrying about my little boy and his future, about what this is doing to my parents, about my siblings and about being too tired or in too much pain to have a normal life with my fiancee. i see everyone frustrated with me not being myself, but its like im not allowed to tell them im scared or anything, because thats just being negative or feeling sorry for myself. i guess my question is.... how long am i expected to be in treatments, until i can say im cancer free? did you go thru this for years or is it more recent? do you have a strong support system? are their resources for emotional support? am i just going insane and handling the whole thing really wrong? thanks for letting me vent and for replying yesterday. it helps to not feel so alone. all my love . . . jen0 -
Danielledanielleambr said:my Gyn is doing the surgery.
my Gyn is doing the surgery. I really trust her she delivered two of my children and one of those was by an emergancy c- cection and My son and I turned out fine then..She wanted to try to preform the surgery vaginaly but a friend of mine who is a gyn doc said she should just go through the c-cection scar to avoid any complications. I also know that on august 4th i will be on my period and I am such a heavy bleeder ( which started the symptoms) and have become anemic because of the heavy bleeding for a year and that scares me alot getting this done. I will be seeing an oncologist afterwords to make sure that they did get everything since it only seems to be in the lining of the uterus. I will see her the 27th for pre op but not sure what questions i need to ask since this is all so much. I am scared of surgery in general I guess the whole thing of dying while being but to sleep and not knowing anyone who has been through this. As for the treatment afterwords I am not worried I can get through that whatever it may end up being. thanks for replying to me it does make me feel better talking to those who have been through this
Hi Danielle and welcome to this discussion board. I am sorry to hear that you are going through this. I think you will probably feel so much better after having the hysterectomy. I know how tiring being anemic can be. If I may offer... research has shown a greater success rate in patients who have a gyn/onc do the debulking and staging surgery. I know you trust your gyn to deliver your babies, but the gyn/onc specializes in this area.
I will pray that you will soon be on the road to recovery and back to your life with your kids!
May God Bless you!0 -
Kathy,kathybd said:Roll call from San Jose,CA
Hello My name is Kathy, 57 with endometrial adenocarcinoma Stage 1, Grad 2-3. Had the DaVinci surgery last Mon at ElCamino Hspital in Mountain View. My Doc is reccomending taxol/carbo..for 3 cycles as a precaution. Am scared and nervous about side effects and having to work as an LVN during treatment in an Internist office. Scared about being exposed to something while being immunosuppressed and nervous about wearing a wig. This is a small office and my boss is not very supportive. Not sure where I will have my treatment. Either at Stanford or near the hospital I had surgery. Have my followup appointment next Mon. To make life more complicated, last year my husband was diagnosed with Stage 4 colon cancer..adenocarcinoma also. Did very well with chemo and surgery, but had return of cancer in his liver and new spots in his lung I have found this site extremely helpful and supportive, with some extremely educated, caring women. Thank you all for being there for us struggling.
I worked during my
Kathy,
I worked during my chemo and hated wearing a wig. I advise that you ask your oncologist about working in the setting you describe. Mine said "good" when I told him I was working - I'm a clinical social worker - I probably was not as exposed as you to the general public. I think we need to be practical but not paranoid or else we will make ourselves sick emotionally. I ditched the wig and went to work and everywhere else BALD. It eventually was "normal". I wish you the best with your treatment. Hang in there and be strong. You will do fine.
Mary Ann0 -
Thanks for your response,daisy366 said:Kathy,
I worked during my
Kathy,
I worked during my chemo and hated wearing a wig. I advise that you ask your oncologist about working in the setting you describe. Mine said "good" when I told him I was working - I'm a clinical social worker - I probably was not as exposed as you to the general public. I think we need to be practical but not paranoid or else we will make ourselves sick emotionally. I ditched the wig and went to work and everywhere else BALD. It eventually was "normal". I wish you the best with your treatment. Hang in there and be strong. You will do fine.
Mary Ann
Thanks for your response, Mary Ann. I would love to just go bald. The Doc I work with would absolutely freak out. He has a concierge practice, which says it all! My face is very chubby and I doubt I would look as cute as you, from the great picture you have. I will ask my oncologists...I have 2 now, to pick from, about working. Pretty much have to work with this economy and my husband's cancer, with a possible layoff next week. Like I said before...many twists and turns in our lives. Just trying to get through each day with the most info about my disease and treatment options. I am so happy I found this site and have gotten all this positive feedback. Be well, mary Ann! Kathy0 -
Jen,JENILENE said:thanks for the help
thanks for responding and for your help. i heard rad is worse than chemo, and watched my grandmother struggle with her uterine cancer and continuous chemo treatments, so im kind of scared of how bad it really will be. i guess im really struggling with the fact that im going thru all this. its hard to talk to my fiancee or family about this. i feel like theyre being burdened. and the truth is, i think i'm taking this so hard because ive been isolating myself from everyone, trying to spare them and yet,trying not to feel so alone. i guess i just want everyone to come around and say that they are in it with me and not going anywhere, as opposed to the "if i dont see it it isnt really there" attitude people in south texas have, and my family especially. i tried to find support groups in my area and only found one. It was sponsored by a local hospital, but it was like going to a seminar on breast cancer awareness, which is okay but not what i need. im just tired from what i thought was 6 months of worry and doctors, but now seems never ending. is it just me and my bad coping skills that is making it this hard, or is it like this for everyone? i feel so overwhelmed lately, worrying about my little boy and his future, about what this is doing to my parents, about my siblings and about being too tired or in too much pain to have a normal life with my fiancee. i see everyone frustrated with me not being myself, but its like im not allowed to tell them im scared or anything, because thats just being negative or feeling sorry for myself. i guess my question is.... how long am i expected to be in treatments, until i can say im cancer free? did you go thru this for years or is it more recent? do you have a strong support system? are their resources for emotional support? am i just going insane and handling the whole thing really wrong? thanks for letting me vent and for replying yesterday. it helps to not feel so alone. all my love . . . jen
You are struggling and it's understandable with all the uncertainty you are feeling.
It helped me to talk to a counselor - someone objective. My work has an EAP program and we can get many sessions free. Perhaps talking to someone a professional would help you process your feelings - in addition to this site and other support groups in your area.
I remember making a conscious decision early on to NOT just be a CANCER PATIENT. I think this helped me get back into my routine quicker which in turn helped me in my treatment.
I wish you the best. Stay strong!!
Mary Ann0 -
So Sorry!JENILENE said:thanks for the help
thanks for responding and for your help. i heard rad is worse than chemo, and watched my grandmother struggle with her uterine cancer and continuous chemo treatments, so im kind of scared of how bad it really will be. i guess im really struggling with the fact that im going thru all this. its hard to talk to my fiancee or family about this. i feel like theyre being burdened. and the truth is, i think i'm taking this so hard because ive been isolating myself from everyone, trying to spare them and yet,trying not to feel so alone. i guess i just want everyone to come around and say that they are in it with me and not going anywhere, as opposed to the "if i dont see it it isnt really there" attitude people in south texas have, and my family especially. i tried to find support groups in my area and only found one. It was sponsored by a local hospital, but it was like going to a seminar on breast cancer awareness, which is okay but not what i need. im just tired from what i thought was 6 months of worry and doctors, but now seems never ending. is it just me and my bad coping skills that is making it this hard, or is it like this for everyone? i feel so overwhelmed lately, worrying about my little boy and his future, about what this is doing to my parents, about my siblings and about being too tired or in too much pain to have a normal life with my fiancee. i see everyone frustrated with me not being myself, but its like im not allowed to tell them im scared or anything, because thats just being negative or feeling sorry for myself. i guess my question is.... how long am i expected to be in treatments, until i can say im cancer free? did you go thru this for years or is it more recent? do you have a strong support system? are their resources for emotional support? am i just going insane and handling the whole thing really wrong? thanks for letting me vent and for replying yesterday. it helps to not feel so alone. all my love . . . jen
Jen,
I am so sorry that you are going through all of this. My doctor told my family from the very beginning that they needed to let me feel and vent whatever feelings I was having. He told me not to hold back the emotions, that I needed to express them for my own well being. I still have good days and bad days and there are a lot of days I feel like I need someone to talk to besides my family. You might check at the cancer center that you go to. The one I go to has a psychologist just for the cancer patients. I never have gone, but have considered it several times. You might check into that. Oh, and you can vent her any time. It's okay for you to feel, angry, anxious, scared... even negative and feel sorry for yourself sometimes. You are young and cancer is scary and quite frankly depressing!! There are so many unknowns and you are so young and this has suddenly changed your whole life. You have every right to have all of those emotions and feelings and many more! You are not alone.
Love and Hugs! hang in there.0 -
Not sure how to postdeanna14 said:So Sorry!
Jen,
I am so sorry that you are going through all of this. My doctor told my family from the very beginning that they needed to let me feel and vent whatever feelings I was having. He told me not to hold back the emotions, that I needed to express them for my own well being. I still have good days and bad days and there are a lot of days I feel like I need someone to talk to besides my family. You might check at the cancer center that you go to. The one I go to has a psychologist just for the cancer patients. I never have gone, but have considered it several times. You might check into that. Oh, and you can vent her any time. It's okay for you to feel, angry, anxious, scared... even negative and feel sorry for yourself sometimes. You are young and cancer is scary and quite frankly depressing!! There are so many unknowns and you are so young and this has suddenly changed your whole life. You have every right to have all of those emotions and feelings and many more! You are not alone.
Love and Hugs! hang in there.
Am doing a reply because I'm not sure how to post to the board. I was diagnosed with papillary serous adenocarcinoma of the uterus in April. Had the usual total surgery by a gyn oncologist. First I developed hematomas under the incision and had to have two sets of sutures removed the second day post op. This had to heal from the inside out so had a wound vac for a while. Then developed a MRSA urinary tract infection. Went home for four days and developed sterile pelvic abcesses. Back in the hospital for drainage. Was there for two more weeks. Lots of antibiotics later, one of the abdominal wounds has developed a tunnel. I pack this every day. Now I have had my first carbo/taxol treatment. Lots of joint pain after. Am also having five weeks of radiation five days per week starting next Monday. Then two sessions of brachytherapy. The cancer had extended almiost through the uterine wall. I am grateful for this board. It is good to know one is not alone.0 -
GunhildGunhild said:Not sure how to post
Am doing a reply because I'm not sure how to post to the board. I was diagnosed with papillary serous adenocarcinoma of the uterus in April. Had the usual total surgery by a gyn oncologist. First I developed hematomas under the incision and had to have two sets of sutures removed the second day post op. This had to heal from the inside out so had a wound vac for a while. Then developed a MRSA urinary tract infection. Went home for four days and developed sterile pelvic abcesses. Back in the hospital for drainage. Was there for two more weeks. Lots of antibiotics later, one of the abdominal wounds has developed a tunnel. I pack this every day. Now I have had my first carbo/taxol treatment. Lots of joint pain after. Am also having five weeks of radiation five days per week starting next Monday. Then two sessions of brachytherapy. The cancer had extended almiost through the uterine wall. I am grateful for this board. It is good to know one is not alone.
My heart and prayers are with you. There are lots of wonderful and strong women on this site to help you through your journey.
MIND, BODY AND SOUL.
Hugs.0 -
Gunhild welcome to the siteGunhild said:Not sure how to post
Am doing a reply because I'm not sure how to post to the board. I was diagnosed with papillary serous adenocarcinoma of the uterus in April. Had the usual total surgery by a gyn oncologist. First I developed hematomas under the incision and had to have two sets of sutures removed the second day post op. This had to heal from the inside out so had a wound vac for a while. Then developed a MRSA urinary tract infection. Went home for four days and developed sterile pelvic abcesses. Back in the hospital for drainage. Was there for two more weeks. Lots of antibiotics later, one of the abdominal wounds has developed a tunnel. I pack this every day. Now I have had my first carbo/taxol treatment. Lots of joint pain after. Am also having five weeks of radiation five days per week starting next Monday. Then two sessions of brachytherapy. The cancer had extended almiost through the uterine wall. I am grateful for this board. It is good to know one is not alone.
What a story you have. I am so sorry you are on this journey with all of us. Feel free to vent or ask any questions you may have. Good luck with all of your treatments. You and your beautiful family will remain in my prayers. Take it one day at a time. In peace and caring. HUGS to you.0 -
welcome GunhildGunhild said:Not sure how to post
Am doing a reply because I'm not sure how to post to the board. I was diagnosed with papillary serous adenocarcinoma of the uterus in April. Had the usual total surgery by a gyn oncologist. First I developed hematomas under the incision and had to have two sets of sutures removed the second day post op. This had to heal from the inside out so had a wound vac for a while. Then developed a MRSA urinary tract infection. Went home for four days and developed sterile pelvic abcesses. Back in the hospital for drainage. Was there for two more weeks. Lots of antibiotics later, one of the abdominal wounds has developed a tunnel. I pack this every day. Now I have had my first carbo/taxol treatment. Lots of joint pain after. Am also having five weeks of radiation five days per week starting next Monday. Then two sessions of brachytherapy. The cancer had extended almiost through the uterine wall. I am grateful for this board. It is good to know one is not alone.
You have been through ALOT!!! I'm sorry that you are dealing with so much. It sounds like they are aggressively treating your cancer. I recommend the book "Getting Well Again" by Carl Simonton. This helped me so much during my treatment and still. I also have UPSC- stage 3a.
Mary Ann0 -
Welcome GunhildGunhild said:Not sure how to post
Am doing a reply because I'm not sure how to post to the board. I was diagnosed with papillary serous adenocarcinoma of the uterus in April. Had the usual total surgery by a gyn oncologist. First I developed hematomas under the incision and had to have two sets of sutures removed the second day post op. This had to heal from the inside out so had a wound vac for a while. Then developed a MRSA urinary tract infection. Went home for four days and developed sterile pelvic abcesses. Back in the hospital for drainage. Was there for two more weeks. Lots of antibiotics later, one of the abdominal wounds has developed a tunnel. I pack this every day. Now I have had my first carbo/taxol treatment. Lots of joint pain after. Am also having five weeks of radiation five days per week starting next Monday. Then two sessions of brachytherapy. The cancer had extended almiost through the uterine wall. I am grateful for this board. It is good to know one is not alone.
Welcome to this site. I am sorry for all that you have been through and you have already been through a lot. You and your family are in my prayers. You are not alone here.
Jean0 -
Welcome Patriciaunknown said:This comment has been removed by the Moderator
Welcome to this site. I am sorry to hear your diagnosis. There are several ladies on this site who also have UPSC. I hope that you find comfort here as were are all here for each other. You are in my prayers.
Jean0 -
Frist time commenting
I had a robotic radical hysterectomy on May 26th after an original diagnosis of cervical cancer (caught via a pap smear) with no symptoms. After the surgery the pathology showed that I had UPSC, stage IIa. My gynecological oncologist surgeon recommended 6 rounds of chemo (carboplatin and taxol) and then vaginal brachytherapy. The diagnosis was quite a shock as it sounds like it has been for most of you. Finding the UPSC cancer network has been a "godsend" for me. All your comments, feedback, and sharing have been so supportive and informative. Although I'm reading up a lot on what's out there, I still feel I'm in the "learn as you go" program. I had my first chemo on July 8th. The first few days were the worst - had extensive left leg pain the next day. Then 2 days later I fainted several times along with throwing up. At the end of the day I ended up in ER and then was hydrated. I started feeling pretty good a few days later. Right now I'm doing my best to keep my hydration up and to eat the right things. For someone who is used to being on the go, it's been a challenge to go with the flow, but I'm learning fast. I am concerned about what happens as I get more chemo treatments and try not to think about that so much as to take each day at a time. I went to the ACS class on Look Good, Feel Better, which was very uplifting and positive. I am not looking forward to losing my hair, but am getting ready for that. Any tips would be helpful.
I live in the San Francisco Bay area and had just retired last March. So I appreciate being part of this dialogue.0 -
Roll Call
Hello Linda and Everyone
I'm from the UK (Lincoln, England) and it has been great to find others with USPC.
My details are:
Name: Polly
Stage 1B UPSC
Hysterectomy 10/12/08 (already had my ovaries removed in 2007)
4 fractions HDR brachytherapy to vaginal vault 8/01/09 - 29/01/09
6 cycles of carboplatin and paclitaxel 12/2/2009 - 28/5/090
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