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Back to a Second Surgery to Complete Staging

rcdeman
Posts: 256
Joined: Aug 2016

So, after much thought and getting opinions from various doctors, we've decided to go with the gyn/onc's (and the tumor board's) recommendation to complete my mom's staging by going for a second surgical procedure to remove para-aortic lymph nodes, the omentum, and the hypermetabolic fluid she's collected from the last surgery that is still bothering her. I will ask the doctor if they are going to do a second peritoneal washing.

My mom's second surgery will be this coming Thursday (10/13/16) and hopefully will all be done laparoscopically to minimze recovery time. If possible, please pray for my mom as she has to go through another surgery and pray that everything taken to pathology turns out clear and free of cancer cells! That would give us some relief as we go into chemo treatment weeks afterwards and might affect our decision of getting external radiation treatment. I'm hoping they don't take too many lymph nodes out that could potentially cause her to have lymphadema in the future. She's already had 19 pelvic lymph nodes taken out and I'm scared that anything more than 30 will exponentially raise her chances of getting lymphadema.

Will update you guys as soon as I can.

Rebecca

Nellasing
Posts: 529
Joined: Oct 2016

You and your mom and the team taking care of her all have my prayers.

rcdeman
Posts: 256
Joined: Aug 2016

Thank you so much Nellasing! Your support and prayers mean so much to us!

Love,
Rebecca

MAbound
Posts: 871
Joined: Jun 2016

I can't remember if your mom's 1st surgery was with an abdominal incision or not,  but I think it was. Compared to that this should be much easier if it's done by robot, so let that thought help to keep you both less anxious beforehand. I got a good suggestion for having GasX on hand for post-op pain. Those post-op gas bubbles can travel around to cause discomfort in unexpected places. For me, I had one setttle in my right shoulder right by my medi-port that bothered me the most, but otherwise I didn't even need ibuprofen for pain. Your mom probably will need something since she's having an omenectomy and more lymph nodes removed, though. The other thing that helps, like for the hysterctomy, is being upright and walking around a bit in the hours and days afterward to prevent ileus. I had that with my first surgery because I was so tied down to the bed with tubes and it was not fun! Prayers and hugs! Hang in there!

rcdeman
Posts: 256
Joined: Aug 2016

Thank you so much. Her first surgery was done laparoscopically as well, but it took her a little longer than average to heal from that due to the hypermetabolic fluid. The doctor said this one should heal more quickly because it's not taking out nearly as much as the first time.

Thanks for the reminder about the GasX. I think I'm more prepared this time around and will make sure she has everything she could possibly need--- GasX, painkillers, stool softener, and walking whenever she can to get her bowels moving.

Best,
Rebecca

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Sending hope, prayers, and hugs to both of you.  Your mom is lucky she has such a caring daughter close to,her.  Hoping for a quick recovery.

Lou Ann

rcdeman
Posts: 256
Joined: Aug 2016

Thank you Lou Ann! Your prayers are so welcome. I'm hoping her recovery from this second surgery will be relatively quick too. :)

Love,
Rebecca

Mmpeterson
Posts: 124
Joined: Sep 2016

Sending hugs and many prayers for your mom and your family that everything goes well!  Maryanne 

rcdeman
Posts: 256
Joined: Aug 2016

Thank you Maryanne! I'm hoping everything goes well and that this will be her final surgery for a long long time!

Love,
Rebecca

EZLiving66's picture
EZLiving66
Posts: 1358
Joined: Oct 2015

(((Rebecca and Rebecca's mom)))  I hope all goes well with this surgery and they don't find any more cancer.  She is very lucky to have a daughter like you!!!

Love,

Eldri

rcdeman
Posts: 256
Joined: Aug 2016

Thank you for your kind words, Eldri. That is my greatest hope at the moment, that there is no more evidence of cancer. It would give us some relief and would make my mom feel more positive as she goes through the next treatment steps. I try to remind her all the time that her cancer is not a death sentence and that many people with later stages are still living well. But we all hope to all dance forever with NED, don't we?

Love,
Rebecca

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Hope this surgery goes well and she recovers quickly.  Yes, the laparoscopic surgery will be much easier on her.  Hoping for all clear!

rcdeman
Posts: 256
Joined: Aug 2016

Thanks Chris! Her first surgery was also done laparoscopically, but it still took her a long time to recover. In fact, she's still recovering now from the first one, so I hope her second surgery won't be too much for her. I'm hoping against all hope that everything comes out clear from pathology reports, but since she had positive peritoneal washings the first time, I don't know how likely it will come out negative this time since she hasn't had chemo yet.

Best,
Rebecca

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Rebecca, I will be praying for your mom, her medical team and for you. Hang in there and please let her know that we're wishing her a successful surgery and quick recovery. Kim

rcdeman
Posts: 256
Joined: Aug 2016

Thank you for your prayers, Kim! I will pass on your message to her! Will keep you updated. :)

Love,
Rebecca

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

Ditto what the other ladies said! This will all be behind you both soon!

Love and Hugs,

Cindi

rcdeman
Posts: 256
Joined: Aug 2016

Thanks so much Cindi, your support is greatly appreciated! I will keep you all updated.

Best,
Rebecca

LindyLu
Posts: 72
Joined: Sep 2016

Sending hugs and good wishes that all goes well for your Mom, Rebecca.  Don't forget to take good care of yourself as well!  You're both strong women and will get through this.  LindyLou

rcdeman
Posts: 256
Joined: Aug 2016

Thanks LindyLou, you too. I am praying for the best outcomes for all of those who are currently going through treatment right now, which includes you.

Love,
Rebecca

giggs100's picture
giggs100
Posts: 91
Joined: Oct 2015

Prayers that your mom's surgery goes well.  I had 42 lymph nnodes removed and never had lymphadema.  

Jerri 

rcdeman
Posts: 256
Joined: Aug 2016

Jerri, your words really give me hope. I'm so concerned that taking out more lymph nodes would result in lymphadema and overall general unwellness for my mom. She really didn't want to go through with the second surgery, but I think we've resigned ourselves that this is the best course because we need to know where her cancer stands in order to go forward with the best treatment.

I'm not what else I can do that could possibly decrease her chances of lymphadema. Was there anything special or out of the ordinary that you did during your treatment to help prevent lymphadema? Did you go through external radiation?

Thank you!
Rebecca

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

Hi Rebecca,

Will be praying for your mother and her surgeon, and will probably ask for some others tonight to do the same. Hoping that all is done with skill and care and that the surgery will yield the best possible outcome. Wishing peace and stamina in the upcoming weeks as she begins the other treatments.

hugs to you,

jane

rcdeman
Posts: 256
Joined: Aug 2016

Thank you so much Jane. Any and all prayers are definitely appreciated! Will keep you updated!

Love,
Rebecca

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Prayers for your moms successful surgery!

giggs100's picture
giggs100
Posts: 91
Joined: Oct 2015

Rebecca, about the only thing I did was kept hydrated and kept using my exercise bike. Right after my chemo treatments I had a CT scan and everything was good no radiation at this time.  Until Labor Day this year when I started having pains in my right lower back and right front groin area.  Had another CT scan and that is when 3 lymph nodes showed up swollen in size.  Then I had 16 external radiation treatments.  Am having another CT scan scheduled on Nov. 9th to see what is happening with the lymph nodes and starting another round of chemo on Nov. 11th.

Jerri

rcdeman
Posts: 256
Joined: Aug 2016

So sorry to hear that it came back. Praying that the radiation and chemo will get rid of the cancer for good this time!

Love,
Rebecca

henhill's picture
henhill
Posts: 123
Joined: Aug 2016

Hi Jerri

My cancer has returned in the same way.  I was NED for about a year when suddenly my CA 125 was elevated to 107.  Just today it was 506 after discovering 3 lymph nodes were affected.  I have a scan on Thursday and expect to go back on chemo right afterwards.  I am done with radiation.  I pray for all of us here, including this mother and daughter.  My daughter is beside herself.  God bless her surgery.

 

Nellasing
Posts: 529
Joined: Oct 2016

henhill so glad you posted to help Jerri with her news... but so very sorry to hear that you are having problems Cry 

Prayers for you and your daughter as well as your care team as you go in on Thursday for your scan... (((HUGS)))

Nellasing
Posts: 529
Joined: Oct 2016

Sure hope the CT on the 9th goes well and that you get through chemo with ease.  Prayers and (((HUGS)))

Mmpeterson
Posts: 124
Joined: Sep 2016

Prayers and hugs for your mom, yourself and family that her surgery will go extremely well!   Maryanne 

rcdeman
Posts: 256
Joined: Aug 2016

I'm quite upset right now. We went to the hospital today, and when we got there was told that the surgeon was cancelling us today due to an unspecified emergency. We have been rescheduled to Saturday. They didn't tell us about the cancellation until we arrived and didn't bother to call us beforehand even when they gotten news earlier that the doctor wasn't going to make it. My mom is especially upset becaeuse she now has to fast an additional day before surgery. Fasting and taking the magnesium citrate has been difficult for her because she is one of those petite people who can't skip a meal easily. She's lost 12 lbs ever since her hysterectomy and can't seem to gain that weight back, so this is quite upsetting.

Sigh, I know emergencies pop up and sometimes it can't be helped, but I'm mostly upset the doctor's office were so lax and procrastinated in notifying us until the last moment when we already there waiting to be admitted at the hospital. Now it's back to the frustrating wait...

Can you tell it's just one of those days? :(
Rebecca

Diya
Posts: 93
Joined: Apr 2015

Oh rebecca, i wish hospitals were better organized than this! Surgery is such a big thing for cancer patients physically and emotionally. Not to mention the family members and friends who shuffle everything around for it. Even in case of emergency they should have called you. 

 

Hope it goes well on saturday. Hugs and prayers for your mum.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I am so sorry this happened to you. They absolutely should have let you know as soon as they knew.  I can totally identify with your mom not wanting to go through the whole fasting/magnesium citrate thing.  I am petite, too, and it's so hard to gain back weight once it's lost.

Hope things go better on Saturday.

 

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

Hi Rebecca,

So sorry for your mom and for you too. That bowel preparation is awful. I had to take a migraine medication after that wretched up-all-night thing due to the deyhdration. It's a lot to go through, and I'm sorry she will have to go through it yet again. I lost about the same amount of weight after my hysterectomy, and it's hard if you are already thin and then you begin chemo.

Praying for you and your mother.

-j

Nellasing
Posts: 529
Joined: Oct 2016

So very sorry that they didn't do a better job of letting you know what had happened Frown

Prayers for you and your mom as you gather your courage around you and take another run at the hill   (((HUGS)))

rcdeman
Posts: 256
Joined: Aug 2016

Thanks all, I understand it can't be helped sometimes, but I was mostly upset yesterday that they didn't proactively notify us. We were actually at the hospital waiting, only to be notified way too late. And you're exactly right, Jane. The bowel preparation is pretty awful. My mom hates it and always feels quite sick and dehydrated. It also makes it more painful when she gets to the hospital and they have to insert an IV. Without water and dehydrated, it's harder to find your veins, and she's had pain and discomfort (being stuck with a needle multiple times) every single time they insert the needle to find a good vein.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I understand why you both would be upset.  Unless the surgeon was walking out the back door as you,were walking in the front, they should have let you know before you got there and if possible before the bowel prep.  That is so miserable.  So sorry that your mom has to go through it another time.

Hugs and prayers for both of you, Lou Ann

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Rebecca, how did the surgery go on Saturday? Is your Mom doing okay?

rcdeman
Posts: 256
Joined: Aug 2016

Thanks for inquiring Kim. It's been quite hectic this past weekend, so I didn't really have the energy to update.

My mom's surgery was on Saturday (10/15/16) and ended up starting later than scheduled. Due to it being the weekend, the staffing seemed to be short and we had to check in through ER. We ended having to stand about 45 minutes in the ER before being issued a room. There were a bunch of mix-ups and miscommunication among the limited staff, which really didn't bode well for the rest of the day.

Surgery took about 2 hours. Although the surgeon told us that the surgery went well (which I am grateful for), he had to reopen all the laparoscopic incisions from the first surgery and actually had to enlarge one of the incisions to remove her lesser omentum. I mentioned previously that her PET/CT scans showed that there was hypermetabolic fluid in my mom's pelvic area. The surgeron apparently found abdominal adhesions and scar tissue that formed from the first surgery which trapped this fluid in a pocket. He had to remove the scar tissue to get around and remove the fluid. I did ask about sentinel lymph node mapping before the surgery before surgery, but he said that only MSK only performed this for endometrial/uterine cancers and it's investigational. He ended up clearing the whole para-aortic area of lymph nodes... how many he removed, we have yet to know until pathology reports come out.

So what went wrong? Usually the nurses are supposed to put you on pain meds via IV after surgery , but apparently they were too slow and the general anaethesia wore off. My mom ended up screaming in utmost pain begging for pain medication before they even did anything. Pain medication is supposed to be applied beforehand to counter the pain more effectively. My mom later told me (after she was a bit more lucid) that it felt like someone had stabbed her multiple times in the gut while being ran over by a car. Her pain was a full 12 out of 10. The nurses ended up having to give her triple the dose of medication due to their mistake. Even after the triple dose, she was still experiencing intense pain. She was dizzy for a long period afterwards as well.

Can I just mention that one of the worst things in the world is having to watch a loved one experiencing intense pain while being helpless to help her? It's pretty horrible, and I was pretty upset with the nurses' incompetence. I advicse to never schedule a surgical procedure during the weekend when nurses are short-staffed and lax. There also seems to be minimal communication and a lot of confusion between the departments, something we didn't experience the last time we were here (on a Thursday in the weekday).

I have to mention that before surgery my mom was pretty calm because she thought this time around would be quicker and even less painful. She didn't experience any intense pain during the first surgery so she went into this second surgery thinking it would be similar. Little did we know... :(

Although Saturday and Sunday was really bad, fortunately things seem to be improving slightly today. My mom's doing a bit better in terms of pain although she still has to take hydrocodone every 4 hours. She doesn't have much of an appetite because of stomach pains and bloatedness. Unfortunately, both of her legs have started swelling up, something that didn't happen last time. We're afraid that this may be the start of lymphadema.

Her pathology reports have not been released yet and should be available sometime this week. The surgeon did a second peritoneal wash, removed her lesser omentum, as well as the general para-aortic area. We will see what the results are. With all the pain she had to go through this time and the swelling, it would be a double-blow if the results are bleak. I am praying 24/7 right now for good results, and as you know the wait is quite excruciating.

Please continue to pray for my mom! Thank you so much!

Love,
Rebecca

Nellasing
Posts: 529
Joined: Oct 2016

That is just awful- really really awful and I am so very sorry!!!!  You need to file a complaint with the hospital but I know you have your hands full right now- that should have NEVER happened - your poor mama and poor you my heart is breaking Cry

Sending prayers for pain relief- quick recovery- rest and healing for your mom and for you too! 

I hope you are taking care of yourself- it is in times of extreme stress when things get turned on in the body that aren't supposed to and you need to guard against getting run down or overly stuck in the sympathetic nervous system.  Make sure you are getting as much rest, water, good food, exercise as you can.

Also sending prayers for good results- you are not alone and I hope you can feel the love and prayers- do you have other family/friends supporting you both?

(((HUGS)))

MAbound
Posts: 871
Joined: Jun 2016

And I thought I had it bad post-op when lack of care led me to develop ileus after my abdominal hysterectomy. I wouldn't call the nurses incompetent, though. Staffing is usually the issue and that's the hospital's shortcoming. And to have this happen after the cancellation, wow, just wow! 

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Wow! I am so sorry your mom had to go through this! All this being understaffed seems to be a problem everywhere, but your mom's problems appear to be extreme. Prayers for you Botha,

janaes
Posts: 775
Joined: May 2016

I am so sorry that your mom had to feel all that pain.   Not fair at all.  I am glad things are getting a little better.  Thanks for the update.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1554
Joined: Jun 2015

Thanks for the update. And, so sorry your Mom went through that! I agree with Nellasing.... Make sure you are taking care of yourself during your support of your Mom. I hope you both find relief very soon! Please keep us posted.

Love and Hugs,

Cindi

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Glad to hear that your Mom is doing better today. She has been put through the wringer and is one tough cookie! Given all the problems she's experienced, is she considering changing medical teams? It may be something to talk about with her once she has recuperated. None of what she went through appears to meet the standard of care that she deserves and should expect. Wishing her a full and quick recovery, Kim

Mmpeterson
Posts: 124
Joined: Sep 2016

I pray your mom is doing better and the pain has lessened from the surgery.  Hugs to you!!  Maryanne

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

I am so sorry that your mom had to go through this again.  If she is still in the hospital they should have put the inflatable leg things on her legs that compress and then release her legs so that it prevents the swelling.  I had it for my hysterectomy and for my gallbladder surgery at two different times and hospitals.  They should have done this.  They also should have put her on a pain IV immediately after surgery before she woke up.  Hopefully the nurses have improved.  Thank goodness that her family was there to intercede for her and on her behalf.

I know what it is like to know that a love one is in pain and there is nothing you can do.  I lost my Mom in 92 to cancer and they had her on a Morphine drip and that did not cut the pain for her.  It was a terrible time knowing that I could do nothing to help her.   But times have changed and medicine is supposed to be better.  Hopefully your mom is doing better now.

 

Praying for your mom, you and the rest of the family.  Let us know what the pathology reports say when you get it.  trish

DrienneB's picture
DrienneB
Posts: 186
Joined: Aug 2013

I have been wondering how your mother has done. So sorry to hear about the pain problems. Sounds horrific.

I would not worry about the swollen legs just yet. I had too drastic swelling after surgery (I had the para-aortic lymphadenectomy first, then the total hysterectomy and oopherectomy combined, as a second procedure on same day.) Anyway, I had those gizmos on my legs to stimulate circulation when I awoke afer surgery. Nonetheless, I swelled up incredibly within a day or two--feet, legs, midsection--and had to wear a maternity dress from a thrift store as I began to take the walks in the days following surgery. It went down within a couple of weeks.

You will want to watch for lymphedema, but try to put that item on the shelf if you can, until after your mother has gone through all that she has to go through in the few months.

Will be praying that her incisions will heal properly and that she will begin to feel good again, and get her strength back. So sorry that both of you must go through this. -j

LindyLu
Posts: 72
Joined: Sep 2016

What a horrid experience to go through, so sorry that your Mom had to endure all that pain and suffering.  That should never have happened, short staffed or not.  Glad to hear she is doing a little better today.  You mother is a strong woman.  I agree with the others, take care of yourself and try to rest.  Sending good wishes that every day will be better for you both.  Hugs..~LL 

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

There is nothing harder than watch a loved one in pain.  I hope everything goes well from now on out and your mother has a chance to heal and get her strength back.  It does not seem to me that she is getting the very best treatment.  Don't be afraid to get a second opinion and different doctor if you need to.  Sending prayers and hugs for both of you.

 Lou Ann

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I am so sorry you and your mom had to go through that.  I also had those leg things when I was in the hospital.  When I got home, my feet and legs were still a little swollen but they did go down in a few days or so.  I wouldn't jump to thinking it's lymphedema just yet.

I do hope your mom continues to feel better and can get out of there as soon as she feels able and her pain is under control.  I can't believe they didn't have her on pain meds in time.   That's awful.

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