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Endometrial cancer diagnosis

DougOregon
Posts: 10
Joined: Feb 2009

Hello,

I am posting this for my sister who was recently (a little over a week ago)
diagnosed with Endometrial cancer, with grade 2 cells.

She is scheduled to have surgery on Thursday at OHSU.
http://www.ohsuwomenshealth.com/services/doctors/gynonc.html

In general, OHSU is considered the top hospital in Oregon, but
does anyone here have any experience with them regarding endometrial
cancer? Or experience with other cancer centers such as NW Cancer Specialists?
http://www.nwcancer.com/Gynecologic_Team.php

Also, she has the option of having robotic surgery or the traditional open
surgery. Can anyone comment as to which might be best? Her surgeon just
completed her fellowship at Northwestern in Chicago and joined OHSU in August
and has done 10 robotic and a couple hundred traditional surgeries. Would
you be comfortable having your surgery done by someone with that amount of
experience?

We also have a question about lymph nodes. From what I've read they say you
need to get about 20-30 surrounding lymph nodes. But her surgeon says that
when you remove the surrounding tissue you're not sure exactly how many
lymph nodes you are getting. Does that sound right, and how do they make
sure they got enough lymph nodes?

This thing caught everyone by surprise (including the doctors) and we're all in shock
right now and trying to get up to speed as best we can in the limited time available
and any help would be greatly appreciated.

Thanks.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I looked into robotic surgery (great video available online that shows the entire operation if you Google 'DaVinci hysterectomy); and Ro10, who posts at this website had the DaVinci robotic surgery. I hope she will post when she sees this. The up-side of robotic surgery is the fast recovery, so you can jump into your radiation or chemo very quickly and you don't get the horrible long scar up your belly. The down side is that the surgeon using robotics may not be able to lift up and examine each of the organs surrounding the uterous to look for cancer spread like he can when he opens you up wide like a sandwich in traditional abdominal surgery. When I look at my scar (which snakes from WAAAY down to about 2" above my navel), I wish I'd have had the robotic surgery. But I am glad that my surgeon found 25 lymph nodes to remove and examine, since only 1 lymph showed microscopic cancer cells, and had he not removed THAT lymph node my staging would have been incorrect. You don't want your sister's staging to be based on 7 or 8 lymph nodes.

Honestly, I'd get a second opinion if there is another Gynecologic Oncologist within reasonable driving distance. My surgeon had 27 years experience and had performed many thousands of hysterectomies with staging. And I personally wouldn't want to be #11 for an inexperienced surgeon on the DaVinci machine. That's me, though. I'd get a second opinion, and maybe there is even a more experienced Gyn/Onc at that same cancer center that you could get for your sister. No physician is insulted when you want a second opinion; they expect it in a life-and-death decision like this.

Try not to be too scared. Grade 2 cells isn't that horrible. (Mine are grade 3!) The cure/survival rate for the lower grade eddometrial cancers is in the high 90%. Your sister has a bumpy road ahead with surgery treatment, but she'll come out of this on the other side a stronger and more spiritual woman for the journey. Please send her here to us if she needs someone to talk to. ((((Doug)))))

DougOregon
Posts: 10
Joined: Feb 2009

Hi Linda,

Thanks for your reply.

We got one second opinion and we are in the process of getting another. The doctor we talked to had about 25 years experience and he doesn't use the robot. He said that in Oregon anyone getting robotic surgery is basically a "guinea pig." Which didn't sound too encouraging!

Just as a reference, do you know how many robot surgeries you doctor has done?

Thanks very much for your help.

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

I somewhat agree with the doctor about us being test subjects for the robotic surgery but every time a doctor does a surgery aren't we a test to see how treatments and different procedures go with the patients? I was all for getting recovering easier and back to normal fast, but I did not look into it as much as I should have because I was in a fog and just couldn't seem to get a hold of issue's at hand. Second and third opinions are not bad.

Good luck with all,
Sharon Oregon

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

I somewhat agree with the doctor about us being test subjects for the robotic surgery but every time a doctor does a surgery aren't we a test to see how treatments and different procedures go with the patients? I was all for getting recovering easier and back to normal fast, but I did not look into it as much as I should have because I was in a fog and just couldn't seem to get a hold of issue's at hand. Second and third opinions are not bad.

Good luck with all,
Sharon Oregon

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

My Gyn-Onc, head of Gynecologic Oncology at Hershey Medical Center (Penn State U affiliate) who has the 25 years experience was 'old school'; didn't ever do robotics. They didn't even have that technology at Hershey Med. I had an appointment with a different cancer center that DID do robotic surgery for cancer, but I had already spent almost 2 months since my diagnosis switching hospitals and having all of my biopsies done again and all D&C tissue pathologies shipped to the new hospital and read there. (My gynecologist did the D&C, but referred me to Hershey Medical when they couldn't get a solid diagnosis of what kind of cancer I had.) They told me at the Women's Cancer Center where they do DaVinci surgery that I would have to first be evaluated to see if I was a candidate for the robotic surgery, because not everyone is. I didn't dare lose any more time and I really trusted my 'old school' surgeon, so I went ahead and had the abdominal surgery. But as I said, when I look at the disfiguring scar, I'm not sure I did the right thing. My decision came down to TIME; I just couldn't afford the delay going through more tests when the type of uterine cancer I have is such a fast-growing aggressive cancer. I may have plastic surgery later to get rid of the scar; it's that ugly and/or I'm that vain. HA! But I don't bare my belly that often now that I am 55. And it may fade given more time and not be so bad.

As a PS: my 'old school' gyn/onc surgeon has since QUIT the hospital where I had my surgery and is now practicing at that same Women's Cancer Center where they do the DaVinci surgery. So I'll bet he's now learning to use the technology his hospital didn't have.

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Hi Linda, I probably would have done the same thing as far as time goes and I also had to wait and see if I was a candidate for it. From what I gather the overweight label I had helped me qualify for it. I know it takes about 5 hours for the surgery and I had a big head after the operation. lol I bet your 'old school doctor is watching it very closely'.

What is next for you after the treatments are over?

Sharon

cookie1948
Posts: 79
Joined: Feb 2009

Hi Linda,
Well, i have been reading all about this Davinci robotic surgery? I had never heard about this before ever! I am sure that is not what my 85 yr old mom is getting. Today we are waiting for a surgery date and ct results. and pre op appt. I think she's having the traditional abdominal hysterectomy. I know she will be very uncomfortable as that incision seems large from what you said.
Thanks for the info. My husband said i'm driving myself crazy reading the discussion boards and worrying. lol, hey things will be ok.
Linda aka cookie

nikkster
Posts: 10
Joined: Nov 2010

I guess no one really prepares you for the Big C diagnosis.
I was a patient at a clinic for another problem when the doctors discovered the tumor.
At the time, I was seven hours away from home and decided that the best course of action would be to return to my home town and receive the surgery. Then,upon returning home, I waited two weeks for an appointment. A biopsy was performed during that subsequent office visit {with out any preparation} Then I waited for a week for the uterine cancer diagnosis.The ob gyn told it was grade 2 endometrium cancer and surgery was scheduled. I received several calls from the doctor explaining the need for two surgeons. Due to vacations,my surgery would be postponed for about a month.
In panic mode, I reached out to my circle of friends and contacted other doctors and facilities. One friend suggested that I return to the Cleveland Clinic since I was a patient there already. I called closer hospitals, but I would still have the wait.
I did go to Cleveland and had robotic surgery, I was in the hospital a day and a half due to anesthesia concerns. The doctor saw me on A Friday, and I had my surgery on Monday.
My family and I stayed in a hotel until I could travel the seven hours.
The surgeon did not remove the lymph nodes because the nodes looked fine during a previous Ct scan and by examination during surgery.
However, after the pathology report came back, There was Lymphovascular invasion.
I was absolutely crushed.
From what I read, my risk factors are age at 63, LVI, grade 2 tumor and stage was !B.
Cleveland recommended the most aggressive treatment based on a study. Full pelvic, chemo, and possibly hormonal.
The University of Penn recommended braci and chemo.
My local doctor pelvic and braci radiation. No chemo
I did due diligence as far as a layman can.

I decided to go with Penn, but I am going to use the more aggressive treatment of Cleveland.
I have been so sick and in pain. Meds do help.
I had my first chemo treatment- wow you gals are my heroines!
I chose Penn because it is a cancer center, and it is two hours away.
I stay with my son outside of Philadelphia and will come home between treatments if I feel well. My family has just seemed to place their lives on hold. I feel anxious and guilty.

I am extremely frightened and just hope that I am making the right choice.
My family is wonderful, but I feel that I have left them in a sense.

Thank you for your kindness.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

You are new and there is so much to learn!! I've been "in the club" for over 2 years and I've learned alot.

First of all, welcome. You will find lots of support and info here. This site can be somewhat hard to manuever at first. You posted in the middle of an old thread and I'm answering your post- I hope this discussion doesn't get "lost" here. If no other responses, YOu can always copy and repost as new topic.

Back to you. It is VERY confusing and scary getting the C word!! I remember my initiation. I agree that you did the best you could with the advice given. That's one problem with laproscopic and robotic surgery - they don't get the best view and maybe it's hard to take all those nodes out. I had the old fashion slice and dice variety.

Here's my 2 cents. I think CA treatment is a crap shoot.
1) Check out NCCN.com and use this info as your guide for standard protocols
2) I think docs like to give us minimal info so we don't get scared. Ask questions, get copies of your records, and be proactive. YOU are the one that will be making the decisions and you need the best information for this. As you've experienced there are many opinions on recommended treatment.
3) Get another opinion if you want. Most insurances will pay for at least one.
4) if you don't already, get a gynecologic-oncologist - they are the EXPERTS we need.
5) ask for an assay/functional profile from your surgery - hopefully they did this. This will tell them the best chemo to give you. This is important!!
6) I have a port - love it!
7) Check out alternative treatments too - diet, meditation, yoga, healing touch, accupuncture, exercise. These have helped me alot.
8) Lower your stress level. I worked almost FT until recently. I'm taking medical leave now and realize I should have done this long ago. Stress lowers immune system and will not help anything!!!
9) use this board but my docs always frown on it saying info is "unfiltered" which is true. So you will get all kinds of feedback. I think most of it is good.
10) stay as positive as you can. Ask for help. Sounds like you have great family support which is wonderful.

My saga - I'll be brief - I have grade 3 papillary serous endometrial cancer initially given stage 3a. Initial tx: 6 rounds of carboplatin and taxol. No radiation. I had over a year treatment free until recurrence in May 2010. My CT/PET scans all showed activity in lymph system - however, interestingly, my nodes from surgery were all negative (so much for that "peace of mind"). Docs thought it was false positive but 2 years later it probably was stage 4 from beginning. Grim thought. Anyway, I have recurrence in supraclavicular lymph nodes (collarbone area) and I'm getting chemo (carboplatin) and radiation and docs think I have good chance of another remission period. Papillary serous, UPSC for short, is notorious for being chronic or incurable whichever word you like to hear - neither, I'm sure. If you have this (it's considered grade 3 and you probably don't), stay vigilant!!

So, don't give up. It is so overwhelming at first. Docs have lots of tools at their disposal. If you need to vent 1-1 my email is daisyelder@comcast.net.

Best wishes and many blessings to you. Mary Ann

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Hi Doug Oregon, I am currently getting my treatments at this center and my Dr. did the DaVinci operation and I am 58 years old. I had a radical with everything taken out. I had lymph nodes (not sure how many) and the pelvic wash. I healed well and I am overweight and I am so glad that he did the robotic surgery. I hope your sister has a gyn/onc for this surgery. They have so much more experience with the cancer. I can hardly see the scars from the 5 holes that the surgery will give you. The pain was not even memorial, and I am a big baby when it comes to that. I hope that your sister goes with this type of surgery. I think it depends on how difficult the operation was that your sister's doctor had to deal with on other patients to say whether or not he is qualified . If your sister is comfortable with him is important also. I don't know much about OHSU but I love the way I have been treated at NCS. I hope this helps you and your sister. Sorry that your sister has to deal with this beast but it sounds like it was found early.

Sharon Oregon

DougOregon
Posts: 10
Joined: Feb 2009

Thanks Sharon and Linda for your replies.

We will be seeing a doctor at Northwest Cancer Specialists on wed. for a third opinion. Sharon, can you say which doctor you saw at NW Cancer Specialists? (From what I've heard Drs. McCluskey and Winter do robotic surgeries at NW) Also do you know how many robot surgeries he has done?

We've had pretty good luck in the past at OHSU and they are nationally known for cancer treatments (Lance Armstrong went there), but their only gyn/onc surgeon is pretty new (Just started in August) which is kind of a concern.

Thanks again to everyone for their help.

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

The doctor I am seeing and the one who did my surgery is Dr. Scott Rushing and he did my surgery with a newer update of the DaVinci at Good Sam's in Portland. I checked him out online and it tells you all the information on the Dr.'s The Dr.'s you mentioned I know of them because of hearing other people talking about them. I go every Weds. to get my blood count done and my booster shots. I hope you get the answers to all your questions and you find the best Dr. for your sister.

Best Wishes
Sharon Oregon

DougOregon
Posts: 10
Joined: Feb 2009

That's an amazing coincidence! We will be seeing Dr. Rushing on Wednesday morning.

Thanks for your help and hope all goes well with your treatments.

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Doug, good luck with Dr. Rushing he is a very honest Dr. and I know he will give you the straight stuff on everything. We always talk about the Red Sox and his Mariner's. I will be going in the afternoon for blood work.

Let us know how it all goes.
Sharon Oregon

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Hi Doug, how did the meeting go with Dr. Rushing today? I hope all went well and you got some good information.
Sharon

DougOregon
Posts: 10
Joined: Feb 2009

Hi Sharon,

Just to update. We met with Dr. Rushing on Feb 25th. And my sister decided to go with Dr. Rushing (He's done over 150 robotic surgeries in the past year) and had surgery the next day (the 26th).

She got through the surgery fine, a little over three hours, and we'll have the staging results next wednesday (march 11th).

Since then, she's had a couple complications.

One is a small clot in the right calf (a deep vein thrombosis) which they just started blood thinners today. They are using Lovenox, which you have to give yourself injections twice a day for 7 to 14 days. Not fun.

And the other complication is some swelling in the upper legs and pelvic area, which they think is ordinary post surgery swelling and hopefully not lymphedema.

Between waiting for the staging results and the blood clot and the swelling, it's been a pretty stressful week.

Regards,

Doug

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

Hi Doug and sister, I am so glad that she has had the surgery and blood clots are common after surgery I am told. I had to watch carefully for any swelling and such. I have swelling in my legs after every treatment but then it goes down after awhile. The waiting for the staging is the hardest I remember it well and here's best wishes that it was caught early so no further treatment is needed. Tell your sister to rest all she can, she will recover faster that way. Thanks for the update and I sure hoped you liked Dr. Rushing he's a very caring Dr. at least I think so. I will be seeing him on the 11th for my last chemo treatment. I also had the swelling in the upper region and it went away slowly but it went away.

Best wishes,
Sharon

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

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.

DougOregon
Posts: 10
Joined: Feb 2009

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.

fuzzytrouble's picture
fuzzytrouble
Posts: 210
Joined: Feb 2009

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

DougOregon
Posts: 10
Joined: Feb 2009

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.

Doug

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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.

strawberrygal
Posts: 3
Joined: Jun 2009

Hi Sharon,

I am scheduled to have a robotic hysterectomy next week on June 24, 2009. I ama little scared, but I think I have a good surgeon. I was happy to hear that your surgery went well. Wish me luck!

Love Pat

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Pat

I had the DaVinci hysterectomy last Fall. It lasted about 6 hours and I was discharged 24 hours later. I had a minimal amount of pain and took about 2 pain pills per day for 2 days. My Dr. said that one of the problems of this method is that patients start feeling better so fast and then tend to "over do" or lift things too heavy too soon. I have had other surgeries and found this to be a breeze!

I had Stage 3A adenocarcinoma.

Good luck to you....hope everything goes smoothly!

Karen

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

I hope you read the posts below from Teresa and Me about our surgeries. I think you will be surprised with the litte pain and the quick recovery. I did not even get my pain pill presciption filled. I think I took a couple of tyelonal. I did have gas pains though and bloating which lasted longer than I thought it would. My surgery was 6 hours also for them to do the lymph node removal and other biopsies. I too went home the next day. I was glad that I opted for the robotic surgery instead of the open hysterectomy. I have 5 small incisions instead of the large incision others talk about. I hope all goes well with your surgery, and you get good news with your results.

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

I had the davinci Robotic Surgery. I opeted for the robotic surgery, as there is less pain, less recovery period, less hospital stay, and they assured me there was not risk of waiting for the robotic surgery. I don't think the doctor expected the diagnosis of UPSC when I had the surgery. I think they had thought they had caught the cancer early and I would only need a hysterectomy, and that would be the end of my treatment. But since the frozen section showed UPSC the doctor did remove 21 lymph nodes and did an omental biopsy. My doctor told me also that they do not know how many lymph nodes they remove, but when pathology examines them they know how many they removed. 5 of the lymph nodes were positive for adenocarcinoma. My abdominal washing also showed metastatic cells in it. Because I had the robotic surgery I was able to start treatment sooner than if I had an open hysterectomy.

So many of us experienced the same shock you and your sister are experiencing with the diagnosis you recieved. I am 60 years old and have Stage 3-C. I am encouraged with what I read from other people going through this same diagnosis, especially those who have completed their treatments.

Good luck with your decisions. We are from all over the country and have had different opinions on what it the best treatment plan. We just all hope our plan works for us. HUGS to You.

DougOregon
Posts: 10
Joined: Feb 2009

Hello Ro.

Thanks for the information, especially about the lymph nodes. That was very helpful.

Good luck and best wishes to you, Sharon and Linda.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

My robotic hysterectomy took 6 hours. My gyno/onc removed 20 nodes, all were negative.I was diagnosed StageIIa. Like most of the women here my Dr. thought I would just need a hysterectomy and that would be it. I found out I had an aggresive cancer Dec. 22 at my Dr appointment when the pathology report came back.
I'm very happy that I had the robotic surgery. I have five tiny scars on my stomach. They have never been painful. I was in the hospital a total of 32 hours then went home.
My surgery was done at Loma Linda University Medical Center in California. I'm very happy with my gyno/onc. I believe it is very important that your sister feels confident with her gyno/onc. My best wishes to your sister and I hope she knows how lucky she is having a brother like you looking out for her.....Teresa

DougOregon
Posts: 10
Joined: Feb 2009

Hello Teresa

Thanks for the information and the kind words.

deanna14
Posts: 733
Joined: Oct 2008

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.
Deanna

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

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

deanna14
Posts: 733
Joined: Oct 2008

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

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

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

deanna14
Posts: 733
Joined: Oct 2008

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.
Deanna

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

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.

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

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

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

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)

deanna14
Posts: 733
Joined: Oct 2008

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.

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

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.

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

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.

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

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!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

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.

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

I will certainly look into this. Thank you for this information.
Deb

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

Aloha Deb...didn't take my dr's advice "to take this time for yourself"; thought I would go back to work 6 weeks after surgery(home care RN); started chemo in early July and was told my short term disability plan would not allow me to work on the good days between chemo treatments; would have chemo, be "down" for 4-5 days then gradually feel better, good enough to work but couldn't without losing the disability payments; after cycle 6 the "better time" took longer to come around; after dose 8 I needed a full 6 weeks to feel human again; ended chemo 11/26 went back to work part time (15-20 hours a week) 1/15/09; it is now 6/09 and have finally "turned the corner" (YEAH!!!)and can work a full 8 hours, 4 days in a row with a moderate amount of fatigue afterward; Homecare is more mentally draining than physical, but I do drive approximately 50-100 miles a day to see 5 patients performing IV therapy, wound care and general assessments. everyone is different; I've only known two woman who were able to work through chemo and radiation; none were RN's;
hope this helps; it's hard not to be discouraged, but this too shall pass....(my continual question was WHEN!!!)it would be nice if someone would keeps stats...as I said earlier, right now the cancer industry is focused on keeping us alive; they haven't gotten around to the quality of life issues yet;
Marie

yerba
Posts: 4
Joined: Mar 2009

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.

yerba

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I am fairly new to this discussion board and still learning about my disease and it's treatment. I think it's important for us to have a gyn oncologist which you will be meeting soon. I think it's great that you will have a female who would be able to empathize with your concern about a hysterectomy - I'm assuming you still want to have children.

I am 61 and have uterine papillary serous carcinoma -UPSC for short - which many others on this site have. I had my surgery in September. At my age it was not hard for me to have a hysterectomy. If I was younger and wanted children, I think it would be very hard.

I wish you peace and strength as you enter this journey. Dealing with cancer is very hard. This discussion board has helped me - knowing others are there to listen and support, and give wonderful information. I, too, felt so uninformed - and still do!!

I just learned of a resource that gives cancer treatment info - my doctor uses these guidelines and I found it very interesting. YOu might want to check this out and discuss this with your doctor - it's "NCCN guidelines". With decision trees on all types of cancers.

Keep us posted, Yerba. Take heart and stay strong!! My thoughts and prayers are with you.

Mary Ann

yerba
Posts: 4
Joined: Mar 2009

Thank you for replying, telling me your situation, and for your wisdom and kind wishes. I'm so glad to hear having the hysterectomy was not difficult, and hope you get better every day.

I should have mentioned, I actually don't want to have kids of my own. (I love kids. I might foster parent at some point.) I was just hoping to keep my uterus and ovaries if at all possible for health reasons - any health benefits of having them. I've had pretty amazing healing experiences with different forms of alternative medicine (biofeedback, nutrition, acupuncture, herbs, Feldenkrais; and craniosacral therapy for injuries.) So I was hoping some of these might make it possible to heal the cancer without removing anything, but all the resources I'm finding on these are saying, have the hysterectomy, and use these strategies as complementary care.

Thank you very much for your referral to the NCCN guidelines. I will definitely check them out - this sounds great. Thanks for your encouragement. Sending you my best wishes - you will be in my thoughts.

Sincerely,
yerba

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Sorry about your diagnosis. It is hard to hear that diagnosis. Everything I have read your want to get the cancer removed before it spreads to other areas. Most of us thought we were in early stages because we had no or few symptoms, and it ended up to be more serious than first thought. I had no symptoms, my pap test was abnormal, and I have stage 3C UPSC. I thought all I would need was a hysterectomy. Good luck with your appointment with your female gyn/onocologist. Good luck with making your decisions, too.

lindab555
Posts: 4
Joined: Apr 2009

I have just had my hysterectomy on March 31st. I had the laproscoptic procedure. In the hospital for one night. Only pain was gas from being blown up for the surgery. I was diagnosed just 3 weeks before my surgery with Endometrioid Adenocarcinoma (FIGO1) and have been terrified. My doctor has been great. She is a gyn/onco, not sure how to spell, and is very good. She said it appeared that they got everything because it was confined to the inside wall of the uterus. Yesterday, I went back for my follow-up and the pathology report came back clear and there were no signs of cancer in any lymph nodes. I was very happy and relieved, then she said the magic words. "I want you to have preventive radiation therapy."
I am really scared of this and confused as to why I should have to go through this if there are no signs of cancer. Does anyone have an answer to this? I know I sound petty after reading other's problems but I need to find out all I can about this too. Has anyone been through the same as me?

Thanks for your help and my prayers are with all.

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