CSN Login
Members Online: 6

You are here

Update from the newbie

woodstock99's picture
woodstock99
Posts: 65
Joined: May 2021

Hi All -

I am the newbie recently diagnosed who started a different thread about being scared and needing help. Everyone was great last weekend.   

I did talk to my doctor this week and got more info.  I asked her about grade after D&C and hysteroscopy last week and she said this was not conclusive but the radiologist opinion was hi-grade enomedtroid grade 3 but can't tell cell type. I don't know how bad this is and not sure I want to know at this time.  I know the higher the number the worse things are. She stressed that until I have my surgery it is not a comoplete piucture.  

I am having my cat scan tomorrow afternoon (Friday) but my dcotor will be away until Thursday and I told her I want her to call me with the results not her PA as they also could impact imeediate next step treatment plan apparently if something shows up.  If not I am scheudled for hystrectomy (at this time laprascopic) on June 10th.  She agreed to do tumor assay but is not a fan of CA125 pre-surgery.  I have consult w/genetic counselor for tresting in a week. 

She precsribe a low dose of Celexa but not sure I really want to start it now.  I take a number of other meds and not looking for issues.  I agve to go for a full blown pre-op testing with an internal medical doctor since I am 68 even though I did not need to do this when I was 63 for my double mastectomy.  She said because I am now over 65 to make sure I am fit for a long  surgery if she has to do a full abdominal one after she starts.  Doing this on Monday afternoon.

I am pretty freaked out about the 30 day lovenox injections.  I am not supposed to take blood thinners due to my macular degeneration and don't really understand why they are needed if you are ableww to get up and walk around. Also about lymph node removal if she can't get snetinal nodes to work.  i have already had lymph nodes rmeoved on both sides when i had my breast cancer surgery and risk of lymphedema remains.  

Appreciated links to other posts and have started ordering "supplies" I will need.  I heard from cancer center social worker yesterday and am supposed to talk to nurse later today or tomorrowing about surgery stuff. I had assumed the surgery and recovery process would be similar to double mastectomy but doctor told me not really that it would be worse.  That aso upset me as I thought it'd be about the same.

Anyway please keep me in your thoughts and prayers for my cat scan tomorrow.  Appreciatee y'all being out there!  

 

 

EZLiving66's picture
EZLiving66
Posts: 1475
Joined: Oct 2015

I'm so sorry you're going through this and getting so many mixed messages. I had my hysterectomy over five years ago. It was laparoscopic and honestly, I danced out of that hospital 20 hours later. The surgery and recovery were so easy. I pray it is that easy for you!

Love,

Eldri

Primavera's picture
Primavera
Posts: 227
Joined: Mar 2019

I had a high-grade endometrioid, grade 3 uterine cancer. It ended up being stage 1. Tumor was less than 1cm. I was also scared about the high grade and almost didn't understand that, but someone here put in a comment with a link explaining that it could be high grade and still be the most common type.

With the uterine cancer, I was afraid all the time to look at my reports on MyChart, but once I got brave enough, and praying before I opened them, I could ease my worries and get ready for what might come. I read so many stories of nurses giving you the wrong report on the phone that I decided not to trust them like that.

I have to say pre-op tests were more involved for the hysterectomy than for the mastectomy. Maybe because for BC I had chemo and blood tests every week and echocardiograms every 2 months. All I had for the mastectomy was lung x-rays.

I stayed in the hospital one night for the hysterectomy, but it wasn't that painful. The nurse asked me to rate my pain from 0 to 10 and when I said 0, she said that was impossible and put Tylenol in my IV drip, but I never opened the prescription bottles after that. I only had pain when I got up from the bed. 

I got shingles (!) the day after my mastectomy, so I had no time to think about mastectomy recovery. I've spent my worst five weeks recovering from shingles. For the first time in 15 years, I took the prescription Tylenol they had given me. Now, I have no memories of what it feels to recover from a mastectomy. I was immobilized and quarantined with the shingles.

Don't be afraid of this laparoscopic hysterectomy. It's really not bad at all. I was surprised at how easy it was. We'll just pray that your CT scans come out OK tomorrow. Try not to worry sick about it; I know it's not easy, but try to stay as calm as you can get. I think MAbound at this site gave me a long list of recommendations that I followed.

I had the genetic counseling after the hysterectomy was done and after the tumor had been tested at the lab.

Forherself's picture
Forherself
Posts: 530
Joined: Jan 2019

I come back to this board because I remember this feeling and want to help others who are in this early, scary period.  I have reminded many women that receiving a cancer diagnosis can cause something like post traumatic stress disorder.  If you read the symptoms at say, the Mayo Clinic website, you are feeling many of the symptoms.  It helps to know that there are others who experience this too.  I did.  I had anxiety and actually had to change the place where I slept for awhile so that I could relax.  This unknown time is very hard.  We all hope that you get good news.  Pathology reports are hard, even for experienced pathologists.  My diagnosis changed after my slides were sent to gynecological pathologists.  I never knew they were so specialized.  You are doing everything you need to do.  Antidepressants don't work right away so remember that when making your decision.  They take awhile to have their effect.  Anti anxiety medication works right away.  Your family doctor might be a good place to go for help with your anxiety.  There is lots of information here about recovery from the hysterectomy et al.   I found it very easy and I took some narcotic pain medication for a couple of days so I could move a lot.  You can talk to your family doctor too about. your concerns for anticoagulants.  Or maybe your opthamologist.  They sometimes can help when a gynecological oncologist might not know all the options.   We are always here if you need someone to talk to.  The board has been kind of quiet lately, but hundreds of women check it everyday, even if they don't say anything.   Keep in touch and good luck tomorrow

 

MoeKay
Posts: 330
Joined: Feb 2004

I hope you get good results on your CT scan tomorrow.  I'm wondering if perhaps your gynecologic oncologist and ophthalmologist could talk and possibly come up with a compromise about the duration of the lovenox?  I'm thinking outloud here, but perhaps the risk for bleeding from your macular degeneration might be significantly reduced if you were only on the lovenox for a lesser period of time as opposed to 30 days?  Or perhaps there is another anti-coagulant that would be less likely to cause a problem with your MD?  This sounds like something the two specialists might be able to hash out in a quick phone call. 

 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2888
Joined: Mar 2013

good luck today, woodstock.  take a breath and know that you are doing everything to get this taken care of.  please come back and let us know how it goes.  

alicia2020
Posts: 148
Joined: Sep 2020

I'm so sorry you're having to go through all of this, but you have absolutely come to the right place for understanding, answers to questions, and support. We have ALL been where you are, and know the terror of what you're feeling. For months and months the first word in my mind every morning was CANCER, and I hated it!! I looked forward to the day when that WASN'T my first thought! And it did happen! It will happen for you, also. 
My diagnosis and treatment timeline was worse than for some women, but regardless, it's all very hard to get through it. Just try to educate yourself, so you can advocate for yourself, and that will give you some peace. 
I was very disappointed to read that you have been told that hysterectomy would be worse than mastectomy. I've never had breast surgery, so I can't compare the two, but like many others here, recovery from surgery for me was not particularly difficult....especially if they can stick to the laparoscopic method. Please don't anticipate it being awful! The waiting for pathology reports requires the patience of a saint. As my friends here explained, it's not an exact science, and can require time.
We're here for you every step of the way!

I hope your scan goes well today. I will keep you in my prayers.

Hugs, Alicia

yetti's picture
yetti
Posts: 51
Joined: May 2019

Hello Woodstock99,   I am a stage 4 B Figo 2. Endometrial cancer survivor, I was 2 years NED April 2021.  I had 6 chemos carbo taxol.   i had a 12x15 cm tumor in pelvis which chemo reduced in size and lung Mets. And omentum Mets too.  I had a laproscopic robotic hysterectomy Jan 16 2019. Spent 2 nights in hospital. Some pain at first.  Was ok once I started walking and moving. surgery on wed. Home by Friday.  At grocery store by Sunday. And drove to follow up appt on Tuesday. If it's a laproscopic surgery. You will be up and feeling better in a few days! 🙏 your surgery goes well for you !  please keep us posted about your laproscopic  hysterectomy !  Sincerely Yetti 

woodstock99's picture
woodstock99
Posts: 65
Joined: May 2021

Thank you all so much.  I leave tis page open on my desktop and try to rememebr to check in but am just overwhelmed.  Betwehen trying to keep up with work for now and what seems like constanmt barrage of calls and messages from various meidcal entities my head is spinning.  The scan was ok.  I kind of had a melt down when we first got to the imaging facility in the waiting area after drinking the barium and then agin when I walked into the scan room.  Lukcily it was over quickly and I am drinking lots of water to get that constrast out of my system.  I am going to try to have somewhat of a "normal" weekend and we are going to dinner with another couple tomorrow night and it will be nice to have Monday off.  I ordered some things on Amazon today and have more to egt.  The surgeon's nurse called me this mroning after emailing me about 4 pages of what to start doing or not now 2 weeksout up until surgery and then some post op stuff.  I was surprised to see the paperowkr say no work for 4-6 weeks but I imagine that varies by perosn. and what you do and we are still working from home.  I really do not know what type of surgery I will end up having so I supposed it could be the full open one and need to go into it knowing that's what may happen.  My surgery is at 7am and we have to be at hopsital  at 5 but then in the paerwork she sent me it said I had to start drinking gatorade something at 3am.  i amy not go to sleep at all the night before.  Next up is pre-op testing by an inetrnal medicine doctor yeusday afteernoon. apparenty since i am over 65 i can;t snkea by with easy pre-op tests that I did for my breats usrgery in 2016, thyropid surgery in 2019 and D&C/hysterroscopy 10 days ago.  then a prelim video call with genetic couselor next friday morning and a covid test a week from sunday.  i really appreciate all of you.  i hate that this site doesn't send notifications when someone responds to your post or comment so you know there is a new message.  wishing everyone a safe and ahappy and healthy holiday weekend.   

Forherself's picture
Forherself
Posts: 530
Joined: Jan 2019

I am an RN and have never heard of this.  They ususally want you taking nothing by mouth  at least 4-8 hours before surgery so it might be a good idea to confirm that is what they want you to do.  I forgot to mention that I had laparoscopy and then an open incision so I had both wounds and my recovery was very easy.  I hope you enjoy your dinner out and can take a vacation from worry!  Keep in touch.  You can do this.

woodstock99's picture
woodstock99
Posts: 65
Joined: May 2021

Hi - this is what is noted iin the materials the nurse snet me.  I am NOT doing a bowel prep before surgery.  

At home the morning of surgery, you should drink up to 20 ounces of a Gatorade, Powerade, or Clearfast and finish this 2 hours prior to surgery. If you are a diabetic, please only drink up to 10 ounces.

LisaPizza's picture
LisaPizza
Posts: 340
Joined: Feb 2018

My anesthesiologist explained to me that they used to tell patients not to eat or drink after midnight, but now they allow fluids until 2 hours before, and patients are less dehydrated. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1772
Joined: Jun 2015

I just went through a total hip replacement surgery a week ago. Just like you, I was given permission to have fluids up to 2 hours before arrival time. It was nice being able to have a cup of tea and some water that morning.  Made the IV poke easeir for sure. And, I had zero bad effects with using this process. So glad they have changed the rules!

Love and Hugs,

Cindi

woodstock99's picture
woodstock99
Posts: 65
Joined: May 2021

Thanks - sedning wishes for a good reciovery on your surgery. 

MAbound
Posts: 1116
Joined: Jun 2016

I'm so glad to hear you are doing well after this as I have it front of me at the end of July. My hoof beats were horses not zebrasSmile, thank goodness! This just goes to show how these little tweeks in practices make getting treated a little more bearable. I'll take any little comforts they can provide!

 

woodstock99's picture
woodstock99
Posts: 65
Joined: May 2021

also the hospital has a website for enhanced recovery after surgery and on the gyno onco page it says:

Prior to Surgery

  • We will explain the plan and expectations for your surgical and anesthetic experience.
  • On the night before surgery, do not eat solid foods after 11 p.m.
  • On the night before surgery, you can drink clear liquids (such as water, Sprite, or Gatorade) up to two hours before your surgery start time.
  • Drink either ClearFast or a 20-oz. Gatorade (if diabetic, drink only half) two hours before your surgery starts.
  • You will get oral non-narcotic pain medications, including Tylenol and gabapentin, in the pre-op area to treat pain before it starts.
woodstock99's picture
woodstock99
Posts: 65
Joined: May 2021

oh my scan results and ca125 blood test are on my chart already but i can't look at them.  my surgeon is out of town and will notn be back in office until Thursday which is when we agreed she would contact me.  i really didnlt tbhink they woudl show up before tuesday due to going so late tiday and monday holiday.  there goes my anxiety leevl.  i do have some xanax that i take before i have to get eye injection so i think i will keep myslef medicated over the weekend.  i just can't bear to look becuase if thye are bad i will be a wreck and may as well push it out as loong as possible.  .      

BluebirdOne's picture
BluebirdOne
Posts: 395
Joined: Jul 2018

Mine was never higher than 18. (I was dx at stage 1a, UPSC)  I luckily had the CA125 just before surgery ordered by my internist. Post Surgery my numbers are 6. They have stopped doing them for me. I also had an emergency CT scan just prior to surgery as my hysteroscopy left me in so much pain and the surgical center shoved me out of the door and told me to go to the ER. You may or may not have it be a good marker for you. Breathe, rest, and we are thinking of you! 

Denise 

cmb's picture
cmb
Posts: 674
Joined: Jan 2018

Do whatever makes you comfortable over the next few days. This initial period of testing and then waiting for the surgery is always stressful and we each have to find what works best for us.

When I was diagnosed, I didn't know what to expect since I had never had any type of surgery. But like others have found, I didn't find the surgery to be particularly difficult to recover from. But I had the robotic laparoscopic hysterectomy versus the open surgery. So my recovery was quicker than it would have been with open surgery.

I did take the Lovenox shots for 30 days after surgery, but I didn't have any other conditions that made that a concern. It's certainly a point worth pursuing as MoeKAy suggests.

alicia2020
Posts: 148
Joined: Sep 2020

I did research before one of my surgeries and discovered that the national association of anesthesiologists......whatever that association is called...actually recommends fluids before surgery. It makes sense...why put a body through the riggers of surgery AND add dehydration to the stress?? They recommend something clear & high in sugar content? So..the hospitals keep insisting that people avoid fluids 1) kind of as a CYA thing.,,they don't want you vomiting and then aspirating fluids (which is a fairly unlikely occurrence) & 2) by asking that you do that for a crazy number of hours allows them to alter their surgery schedule to suit THEM, not you! So, I deprive myself for hours and then I get over there and they tell me THEY are going to have me drink, x number of ounces, of something! And then they never gave it to me! Ridiculous! I'm just sayin'.....

It's been a while since I did that research, so my recollection of details is not great,but that's the gist of it! 😁

Forherself's picture
Forherself
Posts: 530
Joined: Jan 2019

are used to hydrate during surgery.  And aspiration is not uncommon in patients that have full stomachs and are given a general anesthetic.  The anesthesiologist will manage your hydration during surgery without taking the risk of aspiration.  IV fluids can have electrolytes and sugar in them too.  

Spinal anesthetic is a different story, but I don't think they use the for hysterectomy unless you have serious health issues.   Just general information

woodstock99's picture
woodstock99
Posts: 65
Joined: May 2021

Thanks everyone.  I will likley post an update after I hear from my surgeon about cat scan results when she returns next week.  The couple we are going to dinner with tonoght - he is a internist and said he'd read mmy results for me - but I do not want to put this on him and he wouldnlt; really be able to put them in context of next steps.  Of course it would be great if they said no issues but think I'd rather wait and just hear everything from my doctor good or bad.  Have a safe and happy holiday.   

woodstock99's picture
woodstock99
Posts: 65
Joined: May 2021

More info on the drinking of the gatorade at home beforee surgery.  ERAS - Enchanced Recovery After Surgery 

 

 I’ve always heard that I could not eat or drink anything the night before surgery. Is that different with ERAS pathways?

Yes. Under conventional medical care or surgical care, patients are asked to not drink or eat anything at midnight before their surgery, even if that surgery may be 10 or 12 hours later. With ERAS, we do ask that you not eat any food after midnight, but we do allow you to drink clear fluids, such as water, Gatorade, Sprite, even black coffee with no cream or sugar. We allow you to drink those to your comfort level up until two hours prior to your surgery. Many patients in the ERAS program are also asked to drink carbohydrate-rich drinks, such as Gatorade.

The clear fluids that you're allowed to drink serve a couple of purposes. First, they keep you more comfortable. Instead of having to wait 10 or 12 hours to have anything to drink, we allow our patients to drink those fluids up until two hours before, and they come into surgery more comfortable. Second, it keeps our patients more hydrated.

The carbohydrate-rich drinks serve a different purpose. It’s like running a marathon. The night before a race, marathon runners often “carb load” to get their bodies ready for the stress they're going to experience during the race. We're doing the same thing for our patients. We're getting you ready for the stress your body is going to experience during the surgery. All these recommendations are in line with our National Anesthesia Society guidelines. In general, the goal is to be safe but also to keep you comfortable and optimistic heading into your surgery.  

BluebirdOne's picture
BluebirdOne
Posts: 395
Joined: Jul 2018

as well as hydration with electrolytes. I just had two surgeries back to back, one for cataract and the other for carpal tunnel and trigger finger. Both needed twilight sleep. I was instructed to have the gatorade at four hours prior to surgery, and also two extra strength Tylenol at the same time to help with post op pain. I needed no other medication for the carpal tunnel other than Aleve for one day. ERAS also suggests that they use the compression legs during surgery. I also had them for 12 hours post hysterectomy. Another thing they do now is give you heated gowns to keep you warm enough during surgery, but sometimes they hook them up after you are asleep. My hysterectomy was easy, I had very little pain except when rolling out of bed to a sitting position, but you still need to heal internally for 6 weeks so they want you to not lift and take it easy. I needed one day of pain meds, then I used Aleve or Tylenol. If you need the full abdominal procedure it will be like a C-section which requires a 6 week physical recovery. I have had two, 40 years ago so my knowledge is not at all current to what they do today. Good luck to you!

Denise 

Forherself's picture
Forherself
Posts: 530
Joined: Jan 2019

with your anesthesiologist.   All the best today

Dak82's picture
Dak82
Posts: 47
Joined: Dec 2020

Feeling like you are in a whirl wind is something I can relate to. Seems odd now but the day I went in for my radical abdominal hysterectomy I had no idea that's what they were going to do. I also had no idea how long I'd be in the hospital. I think it was such a riot getting my surgery scheduled quickly I never even talked to the surgeon until I was in pre-op. And to pile on about dehydration, my anesthesiologist also mentioned that the rules need to change because patients are too dehydrated when they have surgery at mid-morning and had nothing to drink since the night before!

Best wishes to you. I can't believe you have to go through this again. Everyone here is pulling for you and sending healing thoughts and prayers.

Deb

woodstock99's picture
woodstock99
Posts: 65
Joined: May 2021

thank you.

amafay
Posts: 2
Joined: Jun 2021

Hello. I am newly diagnosed, have my last CT scan tomorrow prior to surgery, total hysterectomy, on June 23, 2021. My doctor in Burlington, Vt has stated that chemo and radiation will follow after healing. I'm in that initial scary place but  look forward to reading about your journeys as I believe they will help me navigate mine. Any suggestions much appreciated.

woodstock99's picture
woodstock99
Posts: 65
Joined: May 2021

Hi - thinking of you as you begin this oath and I will do my best to share whatever I learn along the way.  Stay positive! 

Subscribe to Comments for "Update from the newbie "