Endometrial cancer diagnosis
Comments
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SwellingDougOregon said:Thanks
Hello Teresa
Thanks for the information and the kind words.
Doug,
I had open hyst in September and I had the swelling in my hips and upper thighs. My doctor thought it was a transient lymph edema. It slowly went down over probably 1 week to 10 days. We joked about my "Big Mama" hips, even though I began to worry that it wouldn't go away. I couldn't even wear my regular clothes. I had to get bigger sweat pants! One day it was just gone, I pray this is the case for your sister.
Take care.
Deanna0 -
More complicationsRo10 said:Doug sorry about your Sister's complications
Glad your Sister made it through the surgery, but sorry to hear about the blood clot, and swelling in the legs. I did have a lot of bloating in the abdomen after the robotic surgery. They put gas into the abdomen, so they can see better. It probably took 6 weeks for all of the bloating to go away. I was able to resume walking soon after surgery which helped to get rid of the gas. Waiting for the staging result are very hard to do. You want to know the results, but yet you don't want the results. But when you get the results you get to know what the treatment plan is. You and your Sister remain in my prayers.
Hi Sharon, Ro, Deanna,
Thanks for your replies.
We just got out of the hospital yesterday. My sister had to go back in for a couple of days.
She was running a fever saturday night and had a gas pocket in the abdomen and the doctors were worried she had Necrotizing fasciitis (flesh-eating bacteria). So they put her on three antibiotics and had 3 teams of doctors watching her.
After a couple of days with no symptoms they stopped the antibiotics. It looks like the gas pocket was just co2 left over from the surgery. My suspicion is the the fever came from the Lovenox treatment (fever is an uncommon side effect of Lovenox) as once the Lovenox was stopped the fever went away. They put her on an Heparin drip and she is now on coumadin (for 6 months)
My sister (her name is Linda) just got the good news about the necrotizing fasciitis when she got bad news about the staging. There were grade 1, grade 2 and an area of grade 3 cells. Her doctor postponed her staging results appt. set for today and is getting a second pathology opinion this friday, but it seems at the least she will need radiation and possibly chemo. She should be getting her staging results next wed. 3/18.0 -
more complicationsDougOregon said:More complications
Hi Sharon, Ro, Deanna,
Thanks for your replies.
We just got out of the hospital yesterday. My sister had to go back in for a couple of days.
She was running a fever saturday night and had a gas pocket in the abdomen and the doctors were worried she had Necrotizing fasciitis (flesh-eating bacteria). So they put her on three antibiotics and had 3 teams of doctors watching her.
After a couple of days with no symptoms they stopped the antibiotics. It looks like the gas pocket was just co2 left over from the surgery. My suspicion is the the fever came from the Lovenox treatment (fever is an uncommon side effect of Lovenox) as once the Lovenox was stopped the fever went away. They put her on an Heparin drip and she is now on coumadin (for 6 months)
My sister (her name is Linda) just got the good news about the necrotizing fasciitis when she got bad news about the staging. There were grade 1, grade 2 and an area of grade 3 cells. Her doctor postponed her staging results appt. set for today and is getting a second pathology opinion this friday, but it seems at the least she will need radiation and possibly chemo. She should be getting her staging results next wed. 3/18.
Hey Doug, I am so sorry to hear about Linda's complication's the poor woman must be so tired. The staging is so complicated so it's good they aren't just going to give you a maybe guess. I had cancer in my ovary but it wasn't ovarian cancer the endometrial went into the ovary and they had to do it again to make sure it wasn't 2 different cancers. It took a long time for the gas to go down for me too but nothing like Linda. Maybe someone else here has gone through the same thing. Where did she have surgery done? Give my best to Linda and hang in there. I went through radiation and now just finished my 6th treatment. I will always have cancer on my mind with every little pain that shows up. Thanks for keeping us up with Linda's journey. We will always be here for her and you.
Living with hope,
Sharon0 -
more complicationsfuzzytrouble said:more complications
Hey Doug, I am so sorry to hear about Linda's complication's the poor woman must be so tired. The staging is so complicated so it's good they aren't just going to give you a maybe guess. I had cancer in my ovary but it wasn't ovarian cancer the endometrial went into the ovary and they had to do it again to make sure it wasn't 2 different cancers. It took a long time for the gas to go down for me too but nothing like Linda. Maybe someone else here has gone through the same thing. Where did she have surgery done? Give my best to Linda and hang in there. I went through radiation and now just finished my 6th treatment. I will always have cancer on my mind with every little pain that shows up. Thanks for keeping us up with Linda's journey. We will always be here for her and you.
Living with hope,
Sharon
Hi Sharon,
Dr. Rushing did the robotic surgery at SW Washington Medical Center in Vancouver. Linda was out the next day. It seemed like a pretty nice place, new and with private rooms. Dr. Rushing does all his surgeries there now.
Thanks for the info on the staging. We were hoping that it would have been just Stage IA but it doesn't look like that will be the case.
Hope all goes well with your treatment.
Doug0 -
Those Grade 3 cells and chemo / radiationDougOregon said:More complications
Hi Sharon, Ro, Deanna,
Thanks for your replies.
We just got out of the hospital yesterday. My sister had to go back in for a couple of days.
She was running a fever saturday night and had a gas pocket in the abdomen and the doctors were worried she had Necrotizing fasciitis (flesh-eating bacteria). So they put her on three antibiotics and had 3 teams of doctors watching her.
After a couple of days with no symptoms they stopped the antibiotics. It looks like the gas pocket was just co2 left over from the surgery. My suspicion is the the fever came from the Lovenox treatment (fever is an uncommon side effect of Lovenox) as once the Lovenox was stopped the fever went away. They put her on an Heparin drip and she is now on coumadin (for 6 months)
My sister (her name is Linda) just got the good news about the necrotizing fasciitis when she got bad news about the staging. There were grade 1, grade 2 and an area of grade 3 cells. Her doctor postponed her staging results appt. set for today and is getting a second pathology opinion this friday, but it seems at the least she will need radiation and possibly chemo. She should be getting her staging results next wed. 3/18.
My cancer was identified as UPSC (Grade 3 cell) before I received my staging. Based on the research that I did, I knew that I would want to have chemo and radiation even if I was Stage 1, because of those aggressive Grade 3 cells. (As it turns out my cancer is Stage IIIc.) That research I did on aggressive cell-type UPSC Stage 1 is synopsized in the really long long thread we have on this Board. If it would be helpful to you, I'd be happy to try and locate it and post it here for you.0 -
endometrial cancer
Hello,
I also have endometrial cancer. Grade 3. I was diagnosed this Jan. Went to a gyn/onc for a second opinion. I may have been a candidate for robotic surgery, but unfortunately the waiting list at this hospital ( the one my insurance went to) was 6 weeks. I did not feel comfortable about letting all that time lapse.
Now I am 6 weeks post op the open total abdomonal hysterectomy surgery. With the long incision. They removed everything and 25 lymph nodes. Some of these lymph nodes were high up in my abdomen. I'm not sure if they would have had such easy access to this area with robotic surgery. Why they removed so many in various areas is because the Pet Scan "lit" up many lymph nodes around the uterus. Suspicious for spreading of this cancer.
The good news is all the lymph nodes are negative! The not so good news is the treatment is pretty much the same, chemo and radiation and recovery time is still ongoing. It has been over 6 weeks since surgery and I still feel limited in my activity and strength. Yet it does get better every day.
I don't know if I would have still felt comfortable in waiting for 6 weeks for the robotic surgery. I am glad I did what I did even if it is a longer recovery time.
Deblittleton0 -
Welcome Deblittleton!Deblittleton said:endometrial cancer
Hello,
I also have endometrial cancer. Grade 3. I was diagnosed this Jan. Went to a gyn/onc for a second opinion. I may have been a candidate for robotic surgery, but unfortunately the waiting list at this hospital ( the one my insurance went to) was 6 weeks. I did not feel comfortable about letting all that time lapse.
Now I am 6 weeks post op the open total abdomonal hysterectomy surgery. With the long incision. They removed everything and 25 lymph nodes. Some of these lymph nodes were high up in my abdomen. I'm not sure if they would have had such easy access to this area with robotic surgery. Why they removed so many in various areas is because the Pet Scan "lit" up many lymph nodes around the uterus. Suspicious for spreading of this cancer.
The good news is all the lymph nodes are negative! The not so good news is the treatment is pretty much the same, chemo and radiation and recovery time is still ongoing. It has been over 6 weeks since surgery and I still feel limited in my activity and strength. Yet it does get better every day.
I don't know if I would have still felt comfortable in waiting for 6 weeks for the robotic surgery. I am glad I did what I did even if it is a longer recovery time.
Deblittleton
Sorry that you have to be going through this, but happy that you have found this site. There are amazing ladies on here that come here to listen, share and support one another through this terrible diagnosis. We are all in different stages of our treatment, so you can find someone to answer most of your questions.
I also had the open hysterectomy in September 2007. I was active prior to my surgery, but not necessarily "physically fit." I remember getting a little frustrated several weeks after surgery because I just wasn't able to do everything I wanted to do as quickly as I thought I should. Please don't be discouraged, it will get better. For some reason, one of the most energy zapping things I had to do was shower and get ready in the morning. I remember crying in the shower because it just took every ounce of strength I had to do all of that. I was just thinking about that as I zipped through my shower.
Now, I have also been through internal and external radiation and three chemo treatments. It will all go by faster than you think... thank the Lord!
Anyway, you have come to the right place, we are here to support you.
God Bless you!
Deanna0 -
Thanksdeanna14 said:Welcome Deblittleton!
Sorry that you have to be going through this, but happy that you have found this site. There are amazing ladies on here that come here to listen, share and support one another through this terrible diagnosis. We are all in different stages of our treatment, so you can find someone to answer most of your questions.
I also had the open hysterectomy in September 2007. I was active prior to my surgery, but not necessarily "physically fit." I remember getting a little frustrated several weeks after surgery because I just wasn't able to do everything I wanted to do as quickly as I thought I should. Please don't be discouraged, it will get better. For some reason, one of the most energy zapping things I had to do was shower and get ready in the morning. I remember crying in the shower because it just took every ounce of strength I had to do all of that. I was just thinking about that as I zipped through my shower.
Now, I have also been through internal and external radiation and three chemo treatments. It will all go by faster than you think... thank the Lord!
Anyway, you have come to the right place, we are here to support you.
God Bless you!
Deanna
I just got through taking my energy zapping shower also. It is pretty hard wrapping the saran wrap around my PICC line all by myself, but I did it.
Chemo #1 was done last week. Not too bad, but the Newlasta injection the next day had awful side effects. Flu like symptoms for the next 3 days! Could not get off the couch.
I am going to my gyn/onc today, 6 weeks post op for follow up. They told my employee health nurse that I would be ready to return to work in 6 weeks. They have got to be kidding! What kind of work can I do from the couch. Even on good days I need to lay flat every few hours to take the pressure/pain off my abdomen.
Wish me luck,
Deb0 -
Good Luck!Deblittleton said:Thanks
I just got through taking my energy zapping shower also. It is pretty hard wrapping the saran wrap around my PICC line all by myself, but I did it.
Chemo #1 was done last week. Not too bad, but the Newlasta injection the next day had awful side effects. Flu like symptoms for the next 3 days! Could not get off the couch.
I am going to my gyn/onc today, 6 weeks post op for follow up. They told my employee health nurse that I would be ready to return to work in 6 weeks. They have got to be kidding! What kind of work can I do from the couch. Even on good days I need to lay flat every few hours to take the pressure/pain off my abdomen.
Wish me luck,
Deb
Deb,
I hope your follow up appt. went well today. My doctor wanted me off work if at all possible for the extent of my treatment. The letter that he wrote to my employer said I needed to be off work for approximately 40 weeks. I am lucky to be able to take the time off. I have wonderful peers at work who have donated me a lot of sick leave. Most importantly I have the most awesome husband who is supporting me financially and in every other way.
I think the Neulasta injection has much worse side effects than the chemo! I just take the pain killers that my doctor prescribes pretty regularly for those couple of days.
Take care.
Deanna0 -
WelcomeDeblittletonDeblittleton said:Thanks
I just got through taking my energy zapping shower also. It is pretty hard wrapping the saran wrap around my PICC line all by myself, but I did it.
Chemo #1 was done last week. Not too bad, but the Newlasta injection the next day had awful side effects. Flu like symptoms for the next 3 days! Could not get off the couch.
I am going to my gyn/onc today, 6 weeks post op for follow up. They told my employee health nurse that I would be ready to return to work in 6 weeks. They have got to be kidding! What kind of work can I do from the couch. Even on good days I need to lay flat every few hours to take the pressure/pain off my abdomen.
Wish me luck,
Deb
Welcome to the site, but sorry you have to be part of it. I an at stage Grade 3 C. I did have the robotic surgery on January 5th, so I was able to start my chemo treatments on January 29th. They were able to remove the upper abdominal lymph nodes with the robot. I had 21 lymph nodes removed and 5 were positive. Today I had my 3rd chemo treatment. I will now have a rest period and then start my radiation treatments back in Illinois and have my final 3 chemo treatments there. My doctor here in Florida said to call him for follow-up when we come back in the fall. My follow-op plan is lab, exams, and CT scans every three months.
I am sorry you have still been drained of energy and needed Neulasta shot already after your first chemo. Sorry you are having pressure/pain, too. Luckily my blood counts have been very good and I have not experienced the fatigue and pain that so many others have had. Hope you get to feeling better, soon.
I think you should talk to your doctor about extending the time off that you have. I don't know what kind of work you do, but you had more than just surgery. Now you need treatment that can put you at risk of catching something from co-workers who come to work sick. If you have any physical demands at work, you don't have the energy to do them. I think the Family Leave Policy requires your employer to give you time off, too. Talk to you doctor and see if he/she can help.
I am happy to hear you have a PICC line. That will help you with your lab draws and chemo treatments. If your blood counts are low, usually the veins are harder to find also. Good luck with all your treatments.
Hope you get to feeling better and stronger, too. HUGS to you.0 -
Time offRo10 said:WelcomeDeblittleton
Welcome to the site, but sorry you have to be part of it. I an at stage Grade 3 C. I did have the robotic surgery on January 5th, so I was able to start my chemo treatments on January 29th. They were able to remove the upper abdominal lymph nodes with the robot. I had 21 lymph nodes removed and 5 were positive. Today I had my 3rd chemo treatment. I will now have a rest period and then start my radiation treatments back in Illinois and have my final 3 chemo treatments there. My doctor here in Florida said to call him for follow-up when we come back in the fall. My follow-op plan is lab, exams, and CT scans every three months.
I am sorry you have still been drained of energy and needed Neulasta shot already after your first chemo. Sorry you are having pressure/pain, too. Luckily my blood counts have been very good and I have not experienced the fatigue and pain that so many others have had. Hope you get to feeling better, soon.
I think you should talk to your doctor about extending the time off that you have. I don't know what kind of work you do, but you had more than just surgery. Now you need treatment that can put you at risk of catching something from co-workers who come to work sick. If you have any physical demands at work, you don't have the energy to do them. I think the Family Leave Policy requires your employer to give you time off, too. Talk to you doctor and see if he/she can help.
I am happy to hear you have a PICC line. That will help you with your lab draws and chemo treatments. If your blood counts are low, usually the veins are harder to find also. Good luck with all your treatments.
Hope you get to feeling better and stronger, too. HUGS to you.
Hello,
Thanks for the info. At present I now have a total of 12 wks off. That is what the FMLA allows. (Family Medical Leave Act) This promised me my particular job back. If I need an extension it would be non-FMLA. This does not promise me that job back, but one I am qualified for.
I will speak with my boss in April when I know more ie how I am feeling, my blood counts etc. I work in an ICU and there are infections everywhere. So it scares me even if my counts may be good.
Does anyone have any experience going back to work or not with a similiar situation? I would be interested in hearing from you.
Deb0 -
workDeblittleton said:Time off
Hello,
Thanks for the info. At present I now have a total of 12 wks off. That is what the FMLA allows. (Family Medical Leave Act) This promised me my particular job back. If I need an extension it would be non-FMLA. This does not promise me that job back, but one I am qualified for.
I will speak with my boss in April when I know more ie how I am feeling, my blood counts etc. I work in an ICU and there are infections everywhere. So it scares me even if my counts may be good.
Does anyone have any experience going back to work or not with a similiar situation? I would be interested in hearing from you.
Deb
Hi Deb and all,
I had conventional surgery and took about 7 weeks off before returning to work. My doc thought it was a good idea though I later learned that most patients don't work while getting chemo. I tolerated everything well - didn't need shots or anything until after my 4th round - then I needed an extra week to build up blood.
I work in an office and am not on my feet alot. I also resumed singing in a chorus which was therapeutic for me I did not want to be a "sick person". Eventually I scaled back to a 4 day work week (FMLA can be taken as "intermittent" for a whole year - I think I did too much for the first couple of months and this schedule is working well for me and my employer right now. I'm tire easily but try to exercise as much as I can tolerate.
If you work in a high stress and possible infectious environment, I think it's better to stay away. Best wishes to you for a speedy and complete recovery.
Mary Ann (aka Daisy)0 -
I am not working...Deblittleton said:Time off
Hello,
Thanks for the info. At present I now have a total of 12 wks off. That is what the FMLA allows. (Family Medical Leave Act) This promised me my particular job back. If I need an extension it would be non-FMLA. This does not promise me that job back, but one I am qualified for.
I will speak with my boss in April when I know more ie how I am feeling, my blood counts etc. I work in an ICU and there are infections everywhere. So it scares me even if my counts may be good.
Does anyone have any experience going back to work or not with a similiar situation? I would be interested in hearing from you.
Deb
Deb,
I work as a nurse in an all male federal prison. My doc pretty much insisted that I be off work while in treatment. This tends to be a high stress environment as well as an infectious environment. Most of these guys are not known for their cleanliness and we see a lot of odd and resistant infections. So it is probably good that my doc wanted me to be off.
If I had a job with low stress and not on my feet or exposed to a lot of germs, I would probably try to work some, just for to feel more normal. I have never known anything but working since I was a teenager. It has been and is a new experience for me to keep myself busy, but I am getting used to it and could see myself working part time or prn.0 -
Not working now, but am a nurse alsoDeblittleton said:Time off
Hello,
Thanks for the info. At present I now have a total of 12 wks off. That is what the FMLA allows. (Family Medical Leave Act) This promised me my particular job back. If I need an extension it would be non-FMLA. This does not promise me that job back, but one I am qualified for.
I will speak with my boss in April when I know more ie how I am feeling, my blood counts etc. I work in an ICU and there are infections everywhere. So it scares me even if my counts may be good.
Does anyone have any experience going back to work or not with a similiar situation? I would be interested in hearing from you.
Deb
I worked in Intermediate care and also ICU so I now what kinds of patients you work with. Working in ICU certainly puts you at exposure to many infections, plus with your PICC line you should not be doing the lifting that I know you have to do with your patients. I would think your doctor would extend the time required for you to be off while you are getting treatment. It is too bad that the medical profession does not always protect their own. Wishing you luck with talking with your boss. I know it is not possible to have light duty when you back to work, even if they promise you this. There is always lifting and turning to be done.
Deanna is so fortunate to have her co-workers helping her with donating their sick and vacation time for her. Don't know if your co-workers would do anything like that. I know other hospitals allow this. It is very generous of others to do this.
Good luck to you, remember to take care of yourself and do what's best for your health.0 -
Time offdeanna14 said:I am not working...
Deb,
I work as a nurse in an all male federal prison. My doc pretty much insisted that I be off work while in treatment. This tends to be a high stress environment as well as an infectious environment. Most of these guys are not known for their cleanliness and we see a lot of odd and resistant infections. So it is probably good that my doc wanted me to be off.
If I had a job with low stress and not on my feet or exposed to a lot of germs, I would probably try to work some, just for to feel more normal. I have never known anything but working since I was a teenager. It has been and is a new experience for me to keep myself busy, but I am getting used to it and could see myself working part time or prn.
Thank you for your input. I am going to seriously consider taking as much time off as I can.
Work in ICU can be pretty stressful. I can be on my feet from 4-11 hrs a night. Being in charge, they are all my patients. The nurses in work are so very supportive and are telling me to take all the time off. This I will need to discuss with my manager with a possibility of cutting back on my hours when I return. I'm not ready to do this yet. I need to see what my #2 chemo and beyond feels like.0 -
time offRo10 said:Not working now, but am a nurse also
I worked in Intermediate care and also ICU so I now what kinds of patients you work with. Working in ICU certainly puts you at exposure to many infections, plus with your PICC line you should not be doing the lifting that I know you have to do with your patients. I would think your doctor would extend the time required for you to be off while you are getting treatment. It is too bad that the medical profession does not always protect their own. Wishing you luck with talking with your boss. I know it is not possible to have light duty when you back to work, even if they promise you this. There is always lifting and turning to be done.
Deanna is so fortunate to have her co-workers helping her with donating their sick and vacation time for her. Don't know if your co-workers would do anything like that. I know other hospitals allow this. It is very generous of others to do this.
Good luck to you, remember to take care of yourself and do what's best for your health.
You are so right about the PICC line and the no such thing as light duty! Thanks for reminding me to do what is best for my health. Being a caregiver all my life, it helps to be reminded.
To health!0 -
Cancer patients are a 'protected' group, like handicappedDeblittleton said:time off
You are so right about the PICC line and the no such thing as light duty! Thanks for reminding me to do what is best for my health. Being a caregiver all my life, it helps to be reminded.
To health!
I don't know the law exactly, but I know I've read about the work issue on other Discussion Boards here (other cancers). Employers are REQUIRED to make accomodations for cancer patients in treatment. Have you talked to Human Resources about this specifically? I am self-employed and work from home, so I can work around my medical appointments, fatigue, and bad days. But I believe that if you need to work a shorter day or be assigned to a safer environment or a 'desk' job, they have to accomodate you.0 -
FMLAlindaprocopio said:Cancer patients are a 'protected' group, like handicapped
I don't know the law exactly, but I know I've read about the work issue on other Discussion Boards here (other cancers). Employers are REQUIRED to make accomodations for cancer patients in treatment. Have you talked to Human Resources about this specifically? I am self-employed and work from home, so I can work around my medical appointments, fatigue, and bad days. But I believe that if you need to work a shorter day or be assigned to a safer environment or a 'desk' job, they have to accomodate you.
I will certainly look into this. Thank you for this information.
Deb0 -
Newly diagnosed
Hello everyone,
I was diagnosed Jan. 23, 2009 with endometrioid endometrial cancer. I'm new to this site, and grateful to be able to read everyone's situtations and have an opportunity to post.
I am in the process of trying to find alternatives to hysterectomy, if possible. I'm going through a list of resources and alternatives I want to check out, or rule out, before having hysterectomy. Unfortunately, at this point I'm not finding anything hopeful in lieu of hysterectomy, just strategies considered helpful as complementary care after hysterectomy.
I have found a surgeon about 3 hours away who teaches laparascopic hysterectomy to other doctors. She seems amazing. She has a lot of info on her site about hysterectomy, if anyone wants to check it out. I get the impression from her resume (which is astounding) that she has a lot of state-of-the-art info. Her name is Kate O'Hanlan (gynecological oncologist.) I feel very fortunate to be able to go to a doctor with her background and dedication.
I meet with her in 2 weeks to ask her questions. I told her via letter that I wasn't ready to have a hysterectomy yet, and wanted to meet with her in person if possible. She left a message yesterday and was very nice about it. She said there were no alternatives to hysterectomy out there for what I have, which is getting hard to deal with, hearing this from one possible resource after another. I'm getting a bit more resigned to this, but it's hard.
I'll put more info in the Resources link.
Thanks for reading this, and best wishes to everyone here.
yerba0
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