New to the Sisterhood

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  • MAbound
    MAbound Member Posts: 1,168 Member
    WinnieH said:

    Thanks Takingcontrol58

    I spoke with the dr. today and he did receive the biopsy taken by the GYN and it confirmed cancer so that is why he wants to do a D&C. I asked about the hysteroscopy and the dr. said he does not recommend it since it requires a flush and that could push cancer cells into the fallopian tubes, etc.

    He also prescribed some Tramadol to help me manage my back pain. Fortunately it's working so I can function and hopefully get more than one hour of sleep tonight.

    Many thanks to you lovely ladies.

    Winnie

    Still confused

    I still don't understand the purpose of a D & C is if you have confirmed cancer and are going to have a hysterectomy. What will it determine that won't be found during the post-hysterectomy pathology studies? I'm wondering if there aren't too many cooks in the kitchen.

    When my gyn referred me to a gyn-onc, she stepped out of the picture to let him run the show. It might not be a bad idea to call the gyn-onc you were referred to to ask if he/she thinks you need to have a d & c at this point if the cancer and hysterectomy are certainties.There's always some degree of risk involved with any invasive procedure and anesthesia, so they should never be done unless absolutely, vitally necessary to your care.This might be a case of different doctors not communicating with each other and you need to be your own advocate here and make sure you really need to have this procedure.

    A D & C might be the gold standard for diagnosing that you have endometrial cancer, but you already know that you definitely have cancer. The post-hysterectomy pathology report will be the final word on what type of cancer you have, where it originated, the stage, and grade and that trumps a D & C and makes me question why you are being subjected to it by the gyn doctor. The gyn oncologist is the superior specialist for women's cancers whereas your gyn doctor is the generalist in terms of expertise in that area, so that's why I'd get his opinion about having the D&C or not.

    Sorry that I'm being such an alarmist about this, but I can't see you undergoing a procedure like this if it doesn't contribute anything that makes it worth the potential risks and discomfort. And I'm not even mentioning what it might cost you if your insurance doesn't cover 100% of the cost or the hassle of finding someone else to be with your mother or be there to take you to and from the procedure.

  • WinnieH
    WinnieH Member Posts: 21
    The dr. said the D&C will

    The dr. said the D&C will help determine if I need a hysterectomy or radical hysterectomy.

    The Tramadol seems to lessen the pain from an 8-9 to about 2-3. At least I can drive and do daily activities again. Keeping fingers crossed for a restful night's sleep. I'm limited in terms of what i can take for the pain since I will have surgery soon. Can't take certain OTC ones because they can cause complications (no Aleve, aspirin, Motrin).

    I found the 4 NCIs in Los Angeles and my dr. is with USC Norris. *At least one silver lining in this jourmey so far.

  • MAbound
    MAbound Member Posts: 1,168 Member
    Thanks Winnie

    Thanks for the explanation, Winnie and I'm so glad you asked your doctor, but I'm going to go out on a limb here and push a bit more. Please don't get mad at me, but this is what's going through my head. 

    Was it the gyn doctor or the gyn-onc that gave you that explanation? Is it your gyn doctor who would be doing the hysterectomy or would it be the gyn-onc?

    If the gyn-onc is going to do the surgery, why would the gyn be doing a d & c to determine between doing a regular vs. radical hysterecomy? Shouldn't that be the surgeon's decision if it's going to be the gyn-onc doing it?

    How does a d & c determine which type of surgery? Can it see what's going on outside the uterus better than the PET scan you are going to have can?

    Again, I'm sorry to be such a pill about this, so just take these questions as something to chew on. I have alarm bells going off in my head that you don't need this procedure, but I'm certainly not qualified to say anything. It never hurts to make your doctors explain things to you and be certain that everyone involved is communicating with each other. It's important to be your own advocate through all of this, so keep those doctors on their toes!

  • HorseLvr
    HorseLvr Member Posts: 102
    WinnieH said:

    The dr. said the D&C will

    The dr. said the D&C will help determine if I need a hysterectomy or radical hysterectomy.

    The Tramadol seems to lessen the pain from an 8-9 to about 2-3. At least I can drive and do daily activities again. Keeping fingers crossed for a restful night's sleep. I'm limited in terms of what i can take for the pain since I will have surgery soon. Can't take certain OTC ones because they can cause complications (no Aleve, aspirin, Motrin).

    I found the 4 NCIs in Los Angeles and my dr. is with USC Norris. *At least one silver lining in this jourmey so far.

    Glad you are getting some

    Glad you are getting some pain relief!

  • WinnieH
    WinnieH Member Posts: 21
    edited February 2018 #26
    MAbound

    Thank you for advocating so hard for me. I greatly appreciate it.

    It is the gyn-onc that gave the explanation and he will be performing the surgery. I will ask the gyn-onc what is the difference between the results from a D&C and a PET scan, given that I will have a total hysterectomy anyway.

  • pinky104
    pinky104 Member Posts: 574 Member
    Waiting a month

    When I had spotting, I had a couple of different ultrasounds and a polyp was located.  I had a D&C in which my cancer was found.

    I had to wait a month for my surgery after meeting with the GYN/onc for the first time.  In the meantime, he sent me for a CT scan at a different hospital where I worked.  I never had a PET scan at that time.  I was able to see the report of what the CT scan found and I could tell my cancer was extensive.  It had spread to both ovaries, the omentum, and the small intestine.  In fact, the report on the omentum said it had a cake-like formation, which to me sounded like a lot of cancer.  I tried to call his office to talk about it but couldn't get through his guard-dog office staff. I left him a message with them, but I doubt he ever got it.  I showed up on the day of surgery and was being prepped for a robotic surgery when my GYN/onc showed up.  He told me he had just looked at my CT scan from the other hospital that morning, and that he wouldn't be able to do my surgery robotically.  The cancer was too extensive.  Needless to say, that was a bit of a shock although I'd been suspicious that would happen.  I was expected back at work in 2 weeks, but I never did go back.  By the time I finished my cancer treatment, I was 62 years old and eligible for Social Security.   My surgery and chemo were successful even though I was found to have stage IVb UPSC.  I had just about 7 years of remission when it was found again last year after it grew extremely rapidly.  That meant more surgery and a different chemo drug plus one of the old ones.  Again, I'm in remission.  My GYN/onc suspects I'll get it back again in another 5 years or so, but hey, I'm alive. It hasn't been a death sentence for me even though I had the month wait for surgery the first time and even though it was the highest possible stage.  I don't know what the future will bring, but I'm 69 years old, so who knows how many years I'll have left anway?  My little brother (5 years younger) died at 57 from a heart attack, my father lived to 84 in spite of prostate cancer, my mother lived to 90 in spite of two different breast cancer occurrences almost 10 years apart, my maternal grandmother had breast cancer in both breasts at the same time and lived to her mid 70's, and my paternal grandmother was healthy and lived to 95.  Anything might happen, but the family seems to do pretty well at surviving and being cured of cancer.  Everyone who had it died of something else quite a few years later.

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited February 2018 #28
    WinnieH said:

    MAbound

    Thank you for advocating so hard for me. I greatly appreciate it.

    It is the gyn-onc that gave the explanation and he will be performing the surgery. I will ask the gyn-onc what is the difference between the results from a D&C and a PET scan, given that I will have a total hysterectomy anyway.

    Feeling better

    I guess I'm feeling better about the D & C now that I understand that it's the gyn-onc that wants it and he'd be the one doing your surgery and guiding your care afterward.

    It doesn't matter if i don't understand what it adds to the knowledge that enables him to do the best job possible for you as long as he does and feels it's necessary to the overall picture that guides him. My experience was different skipping that procedure.  Different doctors have different practices and philosophies and here's a pefect instance of that. There are always so many different scenarios for the treatment of cancer, surgery included.

    Wishing you the best as you go through all of this and hoping I didn't add to you anxiety with my concerns. 

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    edited February 2018 #29
    Pinky 104

    I admire your attitude with all you have been through. None of us know when we will be called home. My 88 yrs old Dad probably has colon cancer (still lives independently). His colon surgeon is pretty sure a polyp my Dad has is the source of bleeding despite the biopsy coming back as negative for cancer. My Dad has a 30% chance of never living in his own home again if he has a colectomy to remove the part of his sigmoid colon that has the polyp that the surgeon thinks is a slow bleed. My Dad has chosen to just live his life one day at a time. My Mom died of uterine cancer at the age of 72 thirteen years ago. Yes, none of us know what our “expiration date” is. My Dad’s cardiologist told my Dad not to have the colon surgery explaining that my Dad would probably die of some other cause before the cancer would take his life. My Dad is choosing quality of life over extended life at all costs -not an easy decision no matter what ones age. Thanks for sharing your thoughts! 

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    WinnieH said:

    The dr. said the D&C will

    The dr. said the D&C will help determine if I need a hysterectomy or radical hysterectomy.

    The Tramadol seems to lessen the pain from an 8-9 to about 2-3. At least I can drive and do daily activities again. Keeping fingers crossed for a restful night's sleep. I'm limited in terms of what i can take for the pain since I will have surgery soon. Can't take certain OTC ones because they can cause complications (no Aleve, aspirin, Motrin).

    I found the 4 NCIs in Los Angeles and my dr. is with USC Norris. *At least one silver lining in this jourmey so far.

    Tramadol

    I’m glad you’re getting some pain relief but be careful with the Tramedol as it is an opioid. You might not want to go there just yet. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,353 Member

    Pinky 104

    I admire your attitude with all you have been through. None of us know when we will be called home. My 88 yrs old Dad probably has colon cancer (still lives independently). His colon surgeon is pretty sure a polyp my Dad has is the source of bleeding despite the biopsy coming back as negative for cancer. My Dad has a 30% chance of never living in his own home again if he has a colectomy to remove the part of his sigmoid colon that has the polyp that the surgeon thinks is a slow bleed. My Dad has chosen to just live his life one day at a time. My Mom died of uterine cancer at the age of 72 thirteen years ago. Yes, none of us know what our “expiration date” is. My Dad’s cardiologist told my Dad not to have the colon surgery explaining that my Dad would probably die of some other cause before the cancer would take his life. My Dad is choosing quality of life over extended life at all costs -not an easy decision no matter what ones age. Thanks for sharing your thoughts! 

    Northwoodsgirl, my mom found

    Northwoodsgirl, my mom found out she had cancer and chose not to do anything.  She found out in 2010 (she was 85) and lived on her own July 9, 2017 until she went in to the hospital and then an assisted living for about six more weeks.  In the final weeks she said to me, "No chemicals, no stiches, no regrets".  I told her the my sisters and I completed supported her decision.  That there was no guarantee she would have lived this long if she had decided to go through with everything.  I know she also didn't want to be a burden to us - she wanted us to live our lives and not make decisions based on her. 

    I know my mother lived on her own and loved listening to the radio and reading the newspaper.  That was her quality of life.  It cannot be an easy decision but, like your dad, it is there decision and we are right to support it - as hard as it is for us.  It can be hard and you are in my prayers.

  • MAbound
    MAbound Member Posts: 1,168 Member
    Worth it

    Well, it sounds like the D & C was worth it if it did nothing else besides stop the bleeding for you for a while before you go in for your surgery. I had the full monty with a total abdominal radical hysterectomy and I had a catheter in for 4 weeks after my surgery. It's more of a bother than anything else because you have to remember it every time you want to change position in bed or take it with you whenever you walk around. They put it in during surgery, so at least you're unaware when that happens! Good luck on the 23rd! I'll be praying for you to have the easier option.

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    WinnieH said:

    Pinky, I'm so sorry you have

    Pinky, I'm so sorry you have gone through so much but you are a fighter and I know you will continue to beat back this horrible beast.

    I went to the hospital for my D&C and biopsy yesterday. As I was getting prepped in the OR, I started to leak several huge blood clots (sorry for the gory details) and there was just red everywhere. It freaked me out but the nurses were so kind and understanding in cleaning me up and keeping me calm. The gyn-onc decided not to scrap the utereus to avoid more bleeding but did do a biopsy of the cervic and cauterized a couple spots that were bleeding. I was out of the hospital after a couple hours with no negative side effects from the general anesthesia.

    So now I am schedule for a hysterectomy or radical hysterectomy on Feb. 23. I'm praying the biopsy results will not require a radical hysterectomy. The gyn-onc said I will need a catheter for a couple weeks if I need a radical hysterectomy and that sounds scarier than the surgery itself.

     

    WinnieH - Praying for good outcome

    The hardest part is waiting!  I will keep you in my prayers that you wont require full abdominal surgery.  Don’t be afraid of the catheter, you won’t even feel it!  I was actually happy that I had it after surgery because there wasn‘t any stress about getting out of bed, especially since they will pump you full of fluids.  For me, this experience has been much easier than I anticipated pre-hysterectomy (post 1 1/2 weeks).

    Good luck - you are in our prayers!

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571

    Northwoodsgirl, my mom found

    Northwoodsgirl, my mom found out she had cancer and chose not to do anything.  She found out in 2010 (she was 85) and lived on her own July 9, 2017 until she went in to the hospital and then an assisted living for about six more weeks.  In the final weeks she said to me, "No chemicals, no stiches, no regrets".  I told her the my sisters and I completed supported her decision.  That there was no guarantee she would have lived this long if she had decided to go through with everything.  I know she also didn't want to be a burden to us - she wanted us to live our lives and not make decisions based on her. 

    I know my mother lived on her own and loved listening to the radio and reading the newspaper.  That was her quality of life.  It cannot be an easy decision but, like your dad, it is there decision and we are right to support it - as hard as it is for us.  It can be hard and you are in my prayers.

    Thank you for sharing your Mom’s experience

    Thanks so much for sharing your experience with your Mom’s decision at 85 yrs of life to choose quality of days for as long as possible. Like my Dad I think they know that they don’ t want to burden their children and they know they want to live in their own home as long as possible. It makes my heart warm to know others have gone through the same journey with their parent. My Dad’s cardiologist actually his father passed away from colon cancer at an advanced age and my Dad’s cardiologist doesn’ t think Dad would do well with surgery. So we will try to live each day to it’s fullness! Thank you so much for keeping Dad and I in your prayers....it means a lot to this Christian. 

    Lori

  • WinnieH
    WinnieH Member Posts: 21
    edited February 2018 #35
    Pinky, I'm so sorry you have

    Pinky, I'm so sorry you have gone through so much but you are a fighter and I know you will continue to beat back this horrible beast.

    I went to the hospital for my D&C and biopsy yesterday. As I was getting prepped in the OR, I started to leak several huge blood clots (sorry for the gory details) and there was just red everywhere. It freaked me out but the nurses were so kind and understanding in cleaning me up and keeping me calm. The gyn-onc decided not to scrap the utereus to avoid more bleeding but did do a biopsy of the cervic and cauterized a couple spots that were bleeding. I was out of the hospital after a couple hours with no negative side effects from the general anesthesia.

    So now I am schedule for a hysterectomy or radical hysterectomy on Feb. 23. I'm praying the biopsy results will not require a radical hysterectomy. The gyn-onc said I will need a catheter for a couple weeks if I need a radical hysterectomy and that sounds scarier than the surgery itself.

     

  • WinnieH
    WinnieH Member Posts: 21
    Thank you for your kind

    Thank you for your kind thoughts and prayers. I'm trying to do as much prep and research as possible before the surgery. Ok, I can deal with a catheter.

  • WinnieH
    WinnieH Member Posts: 21
    I've been combing through the

    I've been combing through the forum for advice in preparation for surgery. My hip/back is still hurting so I have limited time on the computer as I can't sit for very long. Here's what I have so far, copied from other threads. I would greatly welcome more advice from everyone. thanks in advance.

     

    REQUEST geonomic tumor testing

    REQUEST tumor assay

    Eat a light diet over the next few days and if needed take a laxative

    Pillows for the trip home

    If open abdominal, get a velcro wrap to keep staples in place

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,353 Member
    edited February 2018 #38
    WinnieH said:

    Pinky, I'm so sorry you have

    Pinky, I'm so sorry you have gone through so much but you are a fighter and I know you will continue to beat back this horrible beast.

    I went to the hospital for my D&C and biopsy yesterday. As I was getting prepped in the OR, I started to leak several huge blood clots (sorry for the gory details) and there was just red everywhere. It freaked me out but the nurses were so kind and understanding in cleaning me up and keeping me calm. The gyn-onc decided not to scrap the utereus to avoid more bleeding but did do a biopsy of the cervic and cauterized a couple spots that were bleeding. I was out of the hospital after a couple hours with no negative side effects from the general anesthesia.

    So now I am schedule for a hysterectomy or radical hysterectomy on Feb. 23. I'm praying the biopsy results will not require a radical hysterectomy. The gyn-onc said I will need a catheter for a couple weeks if I need a radical hysterectomy and that sounds scarier than the surgery itself.

     

    Winnie, they don't like to

    Winnie, they don't like to call it 'radical' anymore and go with the more, PC, "complete".  Whatever - it is all the end in the same.  With that said, lots of us have had a complete hysterectomy and I don't know how many have had to have a catheter for weeks afterwards.  Are you having your surgery as a DaVinci (robotic) surgery or a traditional, abdominal incision?  Maybe that is why he is saying a catheter????  My sister had a hysterectomy via incision and did not have a cath.  

    Maybe the other ladies can chime in.  The main thing is you have to pee and/or poop before they let you go no matter what type of surgery you have.  

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    WinnieH said:

    I've been combing through the

    I've been combing through the forum for advice in preparation for surgery. My hip/back is still hurting so I have limited time on the computer as I can't sit for very long. Here's what I have so far, copied from other threads. I would greatly welcome more advice from everyone. thanks in advance.

     

    REQUEST geonomic tumor testing

    REQUEST tumor assay

    Eat a light diet over the next few days and if needed take a laxative

    Pillows for the trip home

    If open abdominal, get a velcro wrap to keep staples in place

    Some more advice56

    The belly binder is a must even with laparoscopy.  It is much easier walking around.  Get it a little big.  I ordered it beforehand and put it on and it was too big.  However when I got home from the hospital it almost didn’t fit from the swelling.  It took a few days for the swelling to recede.

    If you have someone that can spend the night the first night and the hospital allows it -I would recommend having them stay.  I sent my husband home to get some sleep because I was feeling good but I regretted it the next morning.

    Get some gas-x.  The gas can be brutal.   I am almost 2 weeks post surgery and still taking it occasionally.  It really helps!

    My doctor had a complete prep for me before surgery.  The prep was the same as a colonoscopy.  I wasn’t allowed to eat for 36 hours before surgery.  By the time I ate it had been over 56 hours and they forgot to order me breakfast or coffee (thus the advice to have someone stay with you).  I can do without food but coffee is a different story.

    Take the drugs!  The Pain wasn’t that bad.  They gave me Percocet but I didn’t want to take them.  I took tylenol.  I wasnt in much pain but couldn’t get comfortable and after 12 hours took the percuset.  I slept like a baby and was perfectly comfortable.  I took it for about 5 days.  Now there is no pain but coughing and/or sneezing is still uncomfortable.

    Last try not too stress ( I know easier said than done) - I found my imagination was a lot worse than reality and I was pleasantly surprised after surgery!

    Let us know how you are doing.  Keeping you in prayers!

     

    Betty

     

     

     

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member

    Winnie, they don't like to

    Winnie, they don't like to call it 'radical' anymore and go with the more, PC, "complete".  Whatever - it is all the end in the same.  With that said, lots of us have had a complete hysterectomy and I don't know how many have had to have a catheter for weeks afterwards.  Are you having your surgery as a DaVinci (robotic) surgery or a traditional, abdominal incision?  Maybe that is why he is saying a catheter????  My sister had a hysterectomy via incision and did not have a cath.  

    Maybe the other ladies can chime in.  The main thing is you have to pee and/or poop before they let you go no matter what type of surgery you have.  

    Catheter

    I had an abdominal incision and had a catheter for a couple days. They pulled it before I went home. 

  • MAbound
    MAbound Member Posts: 1,168 Member
    Get up and walk ASAP

    Whether you have robotic surgery or abdominal, it's really important to get up and move around ASAP after your surgery to get your intestines to wake up and start moving again after the drugs they give with the anesthesia to paralyze them (so they can do the surgery safely). If you need help, don't wait for it...demand it! Not moving around can lead to a condition called Ileus and trust me, you don't want to go through that (I did). No matter what's tying you down to the bed or how uncomfortable you may be, that is a critical thing and given how short staffed hospitals can be you may have to be a squeeky wheel to get help you need it.