What do you wish someone had told you?

124

Comments

  • XTREME
    XTREME Member Posts: 17 Member

    Questions to ask for newly diagnosed uterine cancer

    Welcome to the sisterhood! You are fortunate to be on this site so soon after the phone call.

    1. I wish I had been aware of the website NNCN. This is where the widely adopted and standardized cancer treatment protocols are posted for doctors and patients. It even has treatment algorithms based on stage and grade and if dealing with a reoccurence of cancer by type. Included are timing of surgery, chemo protocols and types of radiation protocols.  I also wish I was better prepared for the rollercoaster of emotions (denial, anger, fear, anxiety) you will experience as you learn how to go on this journey. 

    2. Ask the surgeon how many Total Abdominal Hysterectomys (TAH) they do in a year and in their career? Your best surgeons in terms of experience have done 100 or more in their career. Ask why they are recommending a laparoscopic surgical approach versus an “open” abdominal surgical approach considering you personal medical and surgical history.

    Minimally invasive-laproscopic  robotic DaVinci is not ideal for everyone. Also finding Women’s Cancer Center that is recognized as a Center of Excellence is a plus. 

    3. Pain management challenges: Tell Your gyn/onc.that you need to have a pain consult. It could be with a PharmD (pharmacist with advanced training- pronounce phonetically as

    ”farm-D”. They are clinical pharmacist. 

    Tip: Tell the ob-gyn surgeon that you need to know where the anasthesiologist and radiologist that the hospital uses for your surgery is coming from. Otherwise your health insurance company will make you pay “out-of-network” rates which could be 60-80% of billed charges ( not the lower “in-network“ discounted contract charges negotiated with “in-network” providers. The hospitals don’t like to tell you ahead of time because they don’t always know which anasthesiologist or nurse anasthesist will be assigned to your surgery. Call member services on the back of your insurance card once you know the hospital, surgeon, radiologist and anasthesiologist name and group name to see if they are “in-network” or “out-of -network”. 

    5. Don’t waste money on a wig! ( You may not need chemo or lose your hair ( find out if cooling caps are covered). Their are so many cute scarves and comfy cotton chemo sleeping caps). 

    Ok I’ll stop now...  Keep your “sisters” on this board posted on how you do. ((Hug))

    Lori

    Lori, This is such a helpful

    Lori, This is such a helpful thread, & especially this post, thanks.

    Still need help with this (no help from doctors here):

    "I also wish I was better prepared for the rollercoaster of emotions (denial, anger, fear, anxiety) you will experience as you learn how to go on this journey. "

  • XTREME
    XTREME Member Posts: 17 Member
    edited February 2018 #63
    XTREME said:

    Lori, This is such a helpful

    Lori, This is such a helpful thread, & especially this post, thanks.

    Still need help with this (no help from doctors here):

    "I also wish I was better prepared for the rollercoaster of emotions (denial, anger, fear, anxiety) you will experience as you learn how to go on this journey. "

    What about this site?

    What about this site?

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  • XTREME
    XTREME Member Posts: 17 Member
    Doctors at any point may

    Doctors at any point may treat you with doctor-speak and choose what and how to tell you so that you get confused and maybe don't have the information you need to think and plan and decide.

    For diagnosis, I sought a hysteroscopy, after a few years of many biopsies that came back with results: scant atypical cells, too little tissue. I was urged to have a d&c. For other medical reasons I did not want any hospital procedure. I did research and figured out what I needed was a hysteroscopy. I went to a new doctor a year ago with that request. That doctor insisted on d&c. I suspected the d&c would yield same results: scant atypical cells, too little tissue. I had already figured out after 7 doctors that they could not see well enough because I have a lot of fibroids and one very large one. So, after April d&c, sono in August; bleeding in October; finally, hysteroscopy that revealed the serous papillary cancer behind the large fibroid. If I had been given the hysteroscopy a year ago, as I requested, I could have had the surgery a year ago. Research the different kinds of diagnostic procedures and the pros and cons and applicability to different situations.

    Preparation for surgery. The surgeon doesn't have the time to tell you all you need to know. Anesthesia: I have huge number of restrictions (allergies, sensitivities, other). Serious planning in advance with top anesthesiologist who will speak with you on your level is needed. I didn't quite know that well enough but fought for it right up to the day before surgery and succeeded in getting great anestheologist treatment and consults before surgery from the top people. Whereas, at a different hospital for the April d&c, the anesthesiologists did not take me seriously, treated me in an angry way, and did the anesthesia incorrectly, whereby I woke up paralyzed and in pain (not from the procedure but from another medical problem I have that was exacerbated by the fasting and dehydration) - never again.

    Same for pain team - but I was not so lucky in that case. I was sent to someone who had no knowledge of how to make a plan for someone with so many sensitivities. I was sent home from surgery with no pain medicine.  I tried some oxycontin for a few days and it didn't seem to target the places that hurt so I quit it. They had nothing to offer a person like me with sensitivies to the usual things.  That was something I managed myself. But I would not have been able to manage any problems with the anesthesia myself.

    What does your biopsy mean? the doctors will be tired and busy and not want to explain it all to you. You may have to go searching.'

    What will it be like on chemo? the doctor/s may not describe that to you. What about quality of life or other medical problems you may have or allergies or sensitivities? It's quite possible none of the doctors will ask you. They may just focus on the cancer as if it weren't connected to the rest of your body, to you and to your life.

    I'm sure I'll continue to think of things I wish I had known.

    I was so worried about surgery and how I'd manage it that I had no time for research, and I was working at the job too.

    Good luck.

  • ConnieSW
    ConnieSW Member Posts: 1,672 Member
    XTREME said:

    What if feet are already, pre

    What if feet are already, pre-cancer, severely deformed since about 20 years ago (hugely compromising gait & reducing walking and exercise), and one has diabetic neuropathy?

    These are just a few of the reasons I have refused so far to have chemo (just 6 weeks since my surgery for serous papillary EC, stage 1a, with some malignant cells in peritoneum (age 7-73).

    Sounds like

    you have Charcot foot?  I am so very sorry.  Additional health issues make this whole thing so much more difficult.  I just don't know how you make the chemo decision, especially  when the medical advice is at such odds.  

    We used to have a member who had MS and deciding whether or not to have chemo was agonizing for her. If I recall correctly, she tried but had to stop. Then her husband became ill and she had to try to be his caregiver. I think of her often and wonder how she's managing. 

    I'm a 1a UPSC who had chemo. Did it make a difference?  Who knows but I've enjoyed the past 5 1/2 years of NED.  I'll never feel safe but it was worth going through. 

  • Tamlen
    Tamlen Member Posts: 343 Member
    Tuesday is the day

    Wonderful ladies -

    Sorry to have been absent. I've had trouble with getting the password reset to work.

    Tuesday is my hysterectomy and the day I say good-bye forever to my most annoying uterus (my periods have been a problem since I was 10, so I am not mourning the loss). My husband and I spent two hours with the gyn/onc last week and feel super good about her. Surgery will be laparascopic and robotic and, if all goes well, I wil go home the next day. Then the wait begins for stage. Keep your fingers crossed for me!

    Thank you again for all the wisdom. It made a difference for the questions I asked and the answers I got.

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    Tamlen said:

    Tuesday is the day

    Wonderful ladies -

    Sorry to have been absent. I've had trouble with getting the password reset to work.

    Tuesday is my hysterectomy and the day I say good-bye forever to my most annoying uterus (my periods have been a problem since I was 10, so I am not mourning the loss). My husband and I spent two hours with the gyn/onc last week and feel super good about her. Surgery will be laparascopic and robotic and, if all goes well, I wil go home the next day. Then the wait begins for stage. Keep your fingers crossed for me!

    Thank you again for all the wisdom. It made a difference for the questions I asked and the answers I got.

    Good Luck and One Last Piece of Advice

    You got this I am a little more than a week out and feeling pretty good.  I put jeans on for the first time yesterday and feel pretty good (the itching from the glue on my belly is my only complaint now).

    One last piece of advice.  If the hospital lets your husband spend the night take them up on it.  I didn't get back to my room until 10:30 p.m. (I was in recovery for 5 hours).  I think the hospital was understaffed or overworked possibly from the flu epidemic.  I was doing good and told my husband in to go home and get a good nights sleep.  In retrospect I should have had him stay.  There were a number (some funny some not so funny) things that happened that wouldn't have happened if he had been there.  By 9 o'clock the next morning I would have killed for a cup of coffee.  Fortunately my husband got there at 9:30 with coffee in hand and I was released at 10:30.  I was so happy to get home

  • saltycandy13
    saltycandy13 Member Posts: 167 Member
    Good Luck Tamlen!

    I know how anxious you are to have it behind you.  That in itself, is a wonderful thing.

    3 weeks tomorrow post op for me.  I went to the gym today.  I'm acting like a turtle but finally things are beginning to look up.  Hang in there.  God's speed!

    Karen

  • Cass83
    Cass83 Member Posts: 151 Member

    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.

    30 days

    I had them for 30 days after my surgery, and like you said, they didn't tell me that before hand either!

  • HorseLvr
    HorseLvr Member Posts: 102
    Tamlen said:

    Type and grade

    Thanks again to everyone who's chimed in with your experiences and wisdom. I used a lot of what you wrote about to guide my thinking in today's appointment with my regular gyn. We met to discuss the biopsy results.

    It looks like I have endometrioid, grade 1. Some relief there. Will see gyn/onc next week.

    Interesting idea to name your

    Interesting idea to name your cancer. If my biospy is positive (hopefully, it isn't), I think I will name it Negan. He's a mean mofo who kills innocent people.

  • puppymom
    puppymom Member Posts: 2

    Good Luck Tamlen!

    I know how anxious you are to have it behind you.  That in itself, is a wonderful thing.

    3 weeks tomorrow post op for me.  I went to the gym today.  I'm acting like a turtle but finally things are beginning to look up.  Hang in there.  God's speed!

    Karen

    What I don't know

    Im new here and getting my biopsy results tomorrow. Im expecting for the mass to be cancerous. I know that this is an important appointment and I wanted to be prepared with my questions.  Thank you so much for all the info you shared with Tamlen so that this info was out there for others. I have learned quite a bit by reading your comments and feel a bit more prepared.

     

  • ckdgedmom
    ckdgedmom Member Posts: 166 Member
    edited February 2018 #72
    Good luck!

    Good luck with the surgery!

    You will be in my prayers...

  • Tamlen
    Tamlen Member Posts: 343 Member
    MugsBugs said:

    Good Luck and One Last Piece of Advice

    You got this I am a little more than a week out and feeling pretty good.  I put jeans on for the first time yesterday and feel pretty good (the itching from the glue on my belly is my only complaint now).

    One last piece of advice.  If the hospital lets your husband spend the night take them up on it.  I didn't get back to my room until 10:30 p.m. (I was in recovery for 5 hours).  I think the hospital was understaffed or overworked possibly from the flu epidemic.  I was doing good and told my husband in to go home and get a good nights sleep.  In retrospect I should have had him stay.  There were a number (some funny some not so funny) things that happened that wouldn't have happened if he had been there.  By 9 o'clock the next morning I would have killed for a cup of coffee.  Fortunately my husband got there at 9:30 with coffee in hand and I was released at 10:30.  I was so happy to get home

    MugsBugs

    That was very good advice, MugsBugs. My husband had a hotel reservation for the overnight (the hospital I chose is 1.5 hours from our house), but I asked him to stay because of your advice. The nursing staff made him very welcome and comfortable overnight. It was so comforting to have him there, it was good to have a second set of eyes and ears, and it was wonderful to walk the halls with him at 1:30 a.m.! Thank you.

  • Tamlen
    Tamlen Member Posts: 343 Member
    puppymom said:

    What I don't know

    Im new here and getting my biopsy results tomorrow. Im expecting for the mass to be cancerous. I know that this is an important appointment and I wanted to be prepared with my questions.  Thank you so much for all the info you shared with Tamlen so that this info was out there for others. I have learned quite a bit by reading your comments and feel a bit more prepared.

     

    Puppymom, how are you?

    How are you doing? How did it go at your appointment? Hope you're ok, puppymom.

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    Tamlen said:

    MugsBugs

    That was very good advice, MugsBugs. My husband had a hotel reservation for the overnight (the hospital I chose is 1.5 hours from our house), but I asked him to stay because of your advice. The nursing staff made him very welcome and comfortable overnight. It was so comforting to have him there, it was good to have a second set of eyes and ears, and it was wonderful to walk the halls with him at 1:30 a.m.! Thank you.

    I’m glad t worked out!  The

    I’m glad t worked out!  The Hospital I was at was 45 minutes away without traffic and 1 1/2 hours during rush hour.  It took awhile for my husband to get there before I could get coffee - the hospital didn’t order me breakfast so I didn’t get coffee until he got there.  I can deal with pain but no coffee is another story!

    i hope you are recuperating well!  Don’t overdo it - even when you feel good you aren’t 100%.  I am 4 weeks out and thought I could make a meeting yesterday and am feeling the 2 hour commute and toting my computer today.  My mother kept telling me that (she had a hysterectomy at 40) - I guess mother knows best.

     

    Take care!

     

    Betty

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited March 2018 #76
    Pillow

    Useba reading bed pillow to sleep after surgery. Really helped. 

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    How are you?

    Hello Tamlen:

    Hope you are feeling better.  My best to you!

    Kathy

  • Tamlen
    Tamlen Member Posts: 343 Member
    Thanks again, everyone

    Thanks again to everyone. I am feeling terrific. I came home 16 hours after surgery, never took more than a few Motrin, climbed stairs easily, and was walking a mile within 2 days, 3 miles as of a few days later. Today I went to agility practice with my dog; we compete. I didn't run at all, just worked her from a stationary position, but it was fun and good to move. And I even got into my pre-surgery jeans just 8 days after coming home. Love that DaVinci.

    I got the staging info a couple of days ago, with some difficult decisions to make, and will post a question about that soon. I am so glad I found you all and so lucky to have the husband I do -- 30 years next year.

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    edited March 2018 #79
    Tamlen said:

    Thanks again, everyone

    Thanks again to everyone. I am feeling terrific. I came home 16 hours after surgery, never took more than a few Motrin, climbed stairs easily, and was walking a mile within 2 days, 3 miles as of a few days later. Today I went to agility practice with my dog; we compete. I didn't run at all, just worked her from a stationary position, but it was fun and good to move. And I even got into my pre-surgery jeans just 8 days after coming home. Love that DaVinci.

    I got the staging info a couple of days ago, with some difficult decisions to make, and will post a question about that soon. I am so glad I found you all and so lucky to have the husband I do -- 30 years next year.

    I'm so glad it all went so

    I'm so glad it all went so good for you.  Surgery was the easiest part of the whole cancer ordeal for me.  I literally danced out the hospital 18 hours after my surgery.  Don't overdo it though. I got kind of carried away and started bleeding. It was nothing serious but it happened on the first day of my new stair-climbing exercise program.

    Please keep us updated on how things are going.  And yes, we are lucky to have the husbands we do - 47 years for me.

    Love,

    Eldri

  • Tamlen
    Tamlen Member Posts: 343 Member

    I'm so glad it all went so

    I'm so glad it all went so good for you.  Surgery was the easiest part of the whole cancer ordeal for me.  I literally danced out the hospital 18 hours after my surgery.  Don't overdo it though. I got kind of carried away and started bleeding. It was nothing serious but it happened on the first day of my new stair-climbing exercise program.

    Please keep us updated on how things are going.  And yes, we are lucky to have the husbands we do - 47 years for me.

    Love,

    Eldri

    47 years!

    That's an incredible relationship, EZLiving66.

    Thanks for the caution about taking it easy. I've had just enough sports injuries over the years to have learned that lesson the hard way. So I am taking good care, staying active without pushing it, and not lifting anything. I almost forgot and leaned over to pick up one our dogs today. My husband, who's still on family leave this week, yelled and saved me :)

  • Tamlen
    Tamlen Member Posts: 343 Member
    Type and grade

    Thanks again to everyone who's chimed in with your experiences and wisdom. I used a lot of what you wrote about to guide my thinking in today's appointment with my regular gyn. We met to discuss the biopsy results.

    It looks like I have endometrioid, grade 1. Some relief there. Will see gyn/onc next week.