What do you wish someone had told you?

Tamlen
Tamlen Member Posts: 341 Member
edited April 5 in Uterine Cancer #1

Hello, everyone. I've spent quite a bit of time this afternoon reading through past messages. You're a wonderfully supportive group and it looks like I'm going to need that. My gyn called today to tell me I have endometrial cancer (don't get angry at her for calling - I asked her to call if the biopsy results came in before my appt on Wed).

I'm 55 and after decades of problems with periods, multiple vaginal ultrasounds in recent years, in and out of menopause supposedly, my latest ultrasound showed a small cervical mass. Had a D&C and hysteroscopy a week ago. No other symptoms. Annual pap normal a couple of months ago. Doc can't tell stage, is referring me to gynecological oncologist for radical hysterectomy and lymph dissection, as the mass is growing into the uterine wall; they don't yet know how far it goes.

 I have three questions right now, for those of you who have a moment to answer one or more of them. Thank you!

 1. What do you wish someone had told you about, warned you about, told you to ask about, etc at the time of diagnosis or your hysterectomy?

 2. Are there questions you encourage me to ask the surgeon, things I might not find in basic web research or conversation with my gyn on Wednesday?

 3. What did you do to manage pain post-hysterectomy, both traditional and alternative? I am allergic to every narcotic ever given to me (opiates and opioids). I've never been sick but when I broke my ribs I had to muster through with ibuprofen -- can't imagine what I'm going to do with this kind of surgery.

 Thanks again!

«1345

Comments

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    edited January 2018 #2
    Advice

    Tamlen, 

    I’m sorry you’ve gotten this news that will most likely change how you look at most things in life forever. At this point, my advice would be don’t get too far ahead of yourself. Take one step at a time. It sounds like you’re on the right track going to a gyn/Onc. Go to the best one at the best facility you can. Your goal now is to get through your surgery and recovery. You won’t know exactly what you’re facing until after you get the pathology from the surgery which takes a couple weeks after surgery which you should use that time for recovery. Truly try to take one day at a time and try not to fill it with waste of time worry. Save the worry for when you have something to worry about. In my experience, the surgery was the easiest part. 

  • MrsBerry
    MrsBerry Member Posts: 102
    Hi Tamlen. While I am sure

    Hi Tamlen. While I am sure you would prefer not to be here, I Am glad you found this site. 

    I am only 11 days post hysterectomy, and do not know my stage yet. Do you know your Type and Grade from the biopsy? That would be a good place to start. Also, will your hysterectomy be laparoscopic and robotic assisted, or open surgery?

    many sites, including this one for the American Cancer Society, have pages on What To Ask; I found them helpful. If you can, take someone with you to take notes and remember what the oncologist says.  

    If you have a laparoscopic procedure, you may be able to get away with ibuprofen and acetaminophine alternating; ice packs, and/or heating pad. I ditched the oxycodone after a couple of days and didn’t look back. Your doc and/or nurse may also have advice for you on the pain management front.

    Like CheeseQueen says, take it one step at a time. Hugs, MrsBerry

  • saltycandy13
    saltycandy13 Member Posts: 167
    Tamlen

    Welcome and I am extremely sorry to read your diagnosis.  We are all in this together.  As far as what to do or ask?  I just had my hysterectomy Friday and I developed a large blood clot.

    Did they mention what type you will have?  is it abdominal or with the DaVinci thing?  There are so many ways to do it, so many questions to ask and I never felt I had the whole story and still don't even after today.

    The ladies here are wonderful and so intelligent, they know more than me.  Please know I pray a lot and I will be thinking of YOU and adding you to my list of prayers for the sick.  God bless you

    Karen

  • MrsBerry
    MrsBerry Member Posts: 102
    edited January 2018 #5
    MrsBerry said:

    Hi Tamlen. While I am sure

    Hi Tamlen. While I am sure you would prefer not to be here, I Am glad you found this site. 

    I am only 11 days post hysterectomy, and do not know my stage yet. Do you know your Type and Grade from the biopsy? That would be a good place to start. Also, will your hysterectomy be laparoscopic and robotic assisted, or open surgery?

    many sites, including this one for the American Cancer Society, have pages on What To Ask; I found them helpful. If you can, take someone with you to take notes and remember what the oncologist says.  

    If you have a laparoscopic procedure, you may be able to get away with ibuprofen and acetaminophine alternating; ice packs, and/or heating pad. I ditched the oxycodone after a couple of days and didn’t look back. Your doc and/or nurse may also have advice for you on the pain management front.

    Like CheeseQueen says, take it one step at a time. Hugs, MrsBerry

    I just thought of something

    I just thought of something re: pain management. They let me use a couple of lidocaine patches for the first 12 hours. They helped a lot!

  • barnyardgal
    barnyardgal Member Posts: 272

    Re pain management. My pain wasn't bad. An ice pack and regular Tylenol worked for me. I had a laparoscopy and recovery was easier than I thought it would be. 

  • Donna Faye
    Donna Faye Member Posts: 427
    Glad you asked

    Have had the full monty since Jan. 2016 - surgery, USPC 1A so chemo and radiation 
    So I am telling you things I wish I had been told or asked, just in case you need them.

    Surgery was fine - no pain and nothing needed - robotic. I was amazed at how well I felt.

    Chemo: steriod effects with chemo - be sure to taper off

    Risk of blood clots - this was worse part of the experience - 6 months on blood thinners - there are ways to avoid this if you know

    I am 77 so at 55 you should do much better. I finished chemo in May and have been attending exercise classes 3 days a week and am feeling strong and ready to start some traveling soon. 

    Hope this makes you feel less concern.

     

     

  • Soup52
    Soup52 Member Posts: 908 Member
     Welcome to the club that we

     Welcome to the club that we all wish we had not had to join. I had similar experience as some of the others. Robotic surgery which was easier than other abdominal surgeries and used very little of the narcotics, but used Tylenol etc. Yea, blood clots are always a possibility with abdominal surgeries. I had one a week after donating a kidney to my daughter ten years ago. Nowadays I think most doctors give you something after to help avoid clots. Lovanox shots or something else to thin the blood plus activity is helpful. One thing I wish I had asked was when the dr or in my case his associates would be coming in to tell me about how the surgery went etc. I wish I had known as my husband wasn’t in the room at the time and I was totally clueless about what they told me.

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    Good luck and pain management!

    My surgery is scheduled for the 29th and I am concerned about pain management.  I haven't ever taken any opoids so I am not sure how I will react.  I picked up my pain meds and antibiotics today. 

    My mother is allergic to all pain meds and last year she had a hip replacement.  The doctor recommended Tramadol which is a non-opiod drug.  He gave her a few days perscription to try before the surgery to see how she tolerated it.  It worked beautifully.  She successfully used it after surgery

    I would write down all your questions before you meet with your surgeon.  I was still in a little bit of shock and disbelief and didn't ask all the questions I wanted to ask.  Luckily I have found this forum and it has been really informative and has answered most of my questions!

    Sorry for your diagnosis and good luck to you!

  • saltycandy13
    saltycandy13 Member Posts: 167
    forgot to mention

    right now I'm on 600mg Motrin.  It's by prescription.  Seems to be working as I could not get into bed the first night home.  The Vicodin didn't work for me plus constipating and that's one thing you don't need!

    I remember have pages of questions.  Good to bring someone with you because what you forget, hopefully they will remember.  I was in a daze and missed a lot the first time.  This is very difficult.  We will do our best to get you through it.  I think if I could make it through, anybody could.  Right now, I'm a mess.  LOL

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    MugsBugs said:

    Good luck and pain management!

    My surgery is scheduled for the 29th and I am concerned about pain management.  I haven't ever taken any opoids so I am not sure how I will react.  I picked up my pain meds and antibiotics today. 

    My mother is allergic to all pain meds and last year she had a hip replacement.  The doctor recommended Tramadol which is a non-opiod drug.  He gave her a few days perscription to try before the surgery to see how she tolerated it.  It worked beautifully.  She successfully used it after surgery

    I would write down all your questions before you meet with your surgeon.  I was still in a little bit of shock and disbelief and didn't ask all the questions I wanted to ask.  Luckily I have found this forum and it has been really informative and has answered most of my questions!

    Sorry for your diagnosis and good luck to you!

    Tramadol

    Uh, I think Tramedol is an opioid. 

  • Wannabeatit
    Wannabeatit Member Posts: 98 Member
    edited January 2018 #12
    Good luck to you!

    I recorded all my meetings before and after and brought someone with me. It’s amazing how much you miss even with another pair of ears in the room. Of course I would always ask if recording would be ok.

     

  • cmb
    cmb Member Posts: 886 Member
    Some Questions You May Want to Add to Your List

    A few things I recommend asking:

    Will you have the CA125 test prior to your surgery? My test result was in the normal range and not useful as a marker for me. But from reading other posts on this site I've learned that not all doctors order this test before surgery. Other ladies who didn't have the test before surgery have regretted not having that pre-surgery test number to measure later CA125 tests results against.

    Does the doctor recommend a pre-surgery CT scan? I did have one and that helped the gynecological oncologist plan his surgical strategy, especially as it involved the lymphadenectomy. But not all doctors (and some patients) want to have CT scans as frequently as other doctors might recommend.

    Will the tumor be tested for genetic mutations? One or more mutations may impact the recommended treatment plan after surgery.

    Good luck with your appointment.

  • Tamlen
    Tamlen Member Posts: 341 Member

    Glad you asked

    Have had the full monty since Jan. 2016 - surgery, USPC 1A so chemo and radiation 
    So I am telling you things I wish I had been told or asked, just in case you need them.

    Surgery was fine - no pain and nothing needed - robotic. I was amazed at how well I felt.

    Chemo: steriod effects with chemo - be sure to taper off

    Risk of blood clots - this was worse part of the experience - 6 months on blood thinners - there are ways to avoid this if you know

    I am 77 so at 55 you should do much better. I finished chemo in May and have been attending exercise classes 3 days a week and am feeling strong and ready to start some traveling soon. 

    Hope this makes you feel less concern.

     

     

    Thanks for the things you

    Thanks for the things you wish you'd known up front -- that's exactly the wisdom of experience that I'm looking for (though I bet none of us here want that kind of wisdom!).

    I've seen several references to blood clots post-op and at other times, which of course is worrying. You said that there are ways to avoid the clots if you know. Can you say more about that?

  • Tamlen
    Tamlen Member Posts: 341 Member
    Soup52 said:

     Welcome to the club that we

     Welcome to the club that we all wish we had not had to join. I had similar experience as some of the others. Robotic surgery which was easier than other abdominal surgeries and used very little of the narcotics, but used Tylenol etc. Yea, blood clots are always a possibility with abdominal surgeries. I had one a week after donating a kidney to my daughter ten years ago. Nowadays I think most doctors give you something after to help avoid clots. Lovanox shots or something else to thin the blood plus activity is helpful. One thing I wish I had asked was when the dr or in my case his associates would be coming in to tell me about how the surgery went etc. I wish I had known as my husband wasn’t in the room at the time and I was totally clueless about what they told me.

    Thanks, Soup52. Yes, I had

    Thanks, Soup52. Yes, I had that very experience post-D&C -- doc came in briefly, we talked, and later I had no memory of what we discussed! Good advice to make sure my husband is around and ready with the questions I know I'll want answered.

  • Tamlen
    Tamlen Member Posts: 341 Member
    MugsBugs said:

    Good luck and pain management!

    My surgery is scheduled for the 29th and I am concerned about pain management.  I haven't ever taken any opoids so I am not sure how I will react.  I picked up my pain meds and antibiotics today. 

    My mother is allergic to all pain meds and last year she had a hip replacement.  The doctor recommended Tramadol which is a non-opiod drug.  He gave her a few days perscription to try before the surgery to see how she tolerated it.  It worked beautifully.  She successfully used it after surgery

    I would write down all your questions before you meet with your surgeon.  I was still in a little bit of shock and disbelief and didn't ask all the questions I wanted to ask.  Luckily I have found this forum and it has been really informative and has answered most of my questions!

    Sorry for your diagnosis and good luck to you!

    Alas, allergic to Tramadol

    Thanks so much, MugsBugs. I've got a long list of questions started, many coming as a result of the helpful advice in prior threads of this forum. You are quite a group and I'm so thankful I found you all.

  • Tamlen
    Tamlen Member Posts: 341 Member

    forgot to mention

    right now I'm on 600mg Motrin.  It's by prescription.  Seems to be working as I could not get into bed the first night home.  The Vicodin didn't work for me plus constipating and that's one thing you don't need!

    I remember have pages of questions.  Good to bring someone with you because what you forget, hopefully they will remember.  I was in a daze and missed a lot the first time.  This is very difficult.  We will do our best to get you through it.  I think if I could make it through, anybody could.  Right now, I'm a mess.  LOL

    Hopeful news about ibuprofen

    Thanks, saltycandy13. You've had a rough few days, hope you're doing better.

  • Tamlen
    Tamlen Member Posts: 341 Member

    Good luck to you!

    I recorded all my meetings before and after and brought someone with me. It’s amazing how much you miss even with another pair of ears in the room. Of course I would always ask if recording would be ok.

     

    That's a really good idea -- I will ask and do. Thank you!

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    Tamlen said:

    Thanks for the things you

    Thanks for the things you wish you'd known up front -- that's exactly the wisdom of experience that I'm looking for (though I bet none of us here want that kind of wisdom!).

    I've seen several references to blood clots post-op and at other times, which of course is worrying. You said that there are ways to avoid the clots if you know. Can you say more about that?

    Lovenox
    After surgery I was put on 14 days of Lovenox injections to prevent blood clots. Something they don’t tell you about pre-op. I guess there’s only so much info you can handle.
  • Tamlen
    Tamlen Member Posts: 341 Member
    edited January 2018 #20
    Thanks for all the advice so far

    A big thanks to all of you I didn't reply to individually -- lots of helpful advice here and I've added it to my ever-growing list.

    Many of the questions you asked me I can't answer yet. I see my regular gyn, the one who did the D&C, tomorrow, to go over the biopsy results in person; I expect to learn type of endometrial cancer then. I've just been scheduled to see my new gyn/onc a week from today, for first consult. So I won't know surgery type, pre-op testing plan, etc until then.

    I will be requesting genetic testing even if they do not suggest it, because I learned something I didn't know: I have a long family history of colon cancer -- I've even tracked it back through every generation of my Scottish family to my 3rd gr grandmother born over 200 years ago. Those Scots did a good thing by recording what everybody died of! No one in my immediate family has had it, but I've got several cousins that have, and my grandfather died of it. I've been diligent about routine colonscopies since I was 40, but did not know until this week's research that the gene mutation responsible for familial colon cancer is also associated with uterine cancer. No doc has ever mentioned that -- sure wish I'd known before now.

  • ckdgedmom
    ckdgedmom Member Posts: 166
    edited January 2018 #21
    pain and questions

    Hi Tamlen...

    I have issues with a lot of pain meds as well...I can't do anything that is in a PCA pump and so no morphine, dilaudid, demerol etc....it makes me itch violently...

    I had an open fully hysterectomy (I am USPC Stage 4B) so I have a very large vertical incision on my abdomen. My hospital has a pain managment team so I was sent to them post surgery (my sugery got pushed very late because the hospital is a Level 1 trauma center so the ORs were in use and the pain team went home) and they put in some tiny pain blocks in my abdomen that delivered medicine right into the abdominal wall area...it helped so much. Sometimes they put in the pain blocks before surgery but in my case it had to be after. I toook Tramadol post surgery and the pain blocks were in for 6 days (they had to change the bolous before I left the hospital). Not gonna lie---it was a lot of pain because it was open but my gyno/onc said she needed to have a very clear field to see it all....we went in thinking it was endometrial but it ended up as UPSC and it spread to my lymph glands.

    Definitely discuss these options for pain managment with your surgeon...it might help if you have to have an open incision...

    I was given lovonox shots before and after surgery...

    be sure to discuss any and all meds you take...even supplements! They had me stop Omega 3 3 days before as well as my athritis meds...

    Eat a light diet before sugery and be sure to have stool softener and GasX and metamucil on hand for when you come home...

    When I met my gyno onco for the first time we discussed the surgery in depth and what I needed to do to prepare. We did not discuss chemo and radiaiton at that time because we did not know what my pathology would show. My cancer was a nasty bugger (I call it El Diablo---the devil) and my ultrasounds showed only some fibroids and my CT just showed an enlarged uterus. My CA125 was in the 600's. The pathologist was having trouble figuring out what kind of cancer it was after my hysteroscopy but the pathology after hysterectomy confirmed it.

    Good luck...we are all here for you...