What do you wish someone had told you?

135

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  • Tamlen
    Tamlen Member Posts: 343 Member
    #42
    Northwoodsgirl said:

    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

    NNCN

    So glad to learn about NNCN, Northwoodsgirl, thank you. My husband and I both read a lot of research and fortunately we have the backgrounds that enable us to wade through a lot of it (my husband's a professor who thinks quantitative statistics are fun, weird man), and finding a site where a lot of material is gathered together is really terrific.

    I will not use a wig if I end up bald. I'm ok with being openly bald when it's hot outside and using scarves otherwise. I get itchy just wearing a wool winter cap, can't imagine how itchy I'd find a wig!

  • Tamlen
    Tamlen Member Posts: 343 Member
    edited January 2018 #43
    derMaus said:

    Lynch Syndrome, Tumor Testing, etc.

    The gene mutation you refer to - Lynch syndrome - can predispose you to all kinds of nastiness, and at a younger age. Mine was not diagnosed until after I already had cancer, and blessedly few in my family have had any problems. You will definitely want to request that test if they haven't already done it. You may also want to consider two other types of testing: geonomic tumor testing, usually done by Foundation One or similar. Last May the FDA approved Keytruda (immunotherapy) for use in any cancer, regardless of origin, that has been identified as having microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR); these attributes are defined in the test. The geonomic report will also list what treatments will work for your tumor type, e.g. immunotherapy, etc. Most times insurance will only pay for F1 after you've had a recurrence, so you're likely to be assigned the off-the-shelf formula as your first round of treatment unless you advocate strongly otherwise. Currently immunotherapy is used only in cases of recurrence, not as a first line, although that may be changing soon.

    The other testing I wish I'd known about is a tumor assay. What they don't tell you is that chemotherapy generally has a low success rate. Pretty much everyone here who's had chemo was sent directly to the standard regimen, taxol and carboplatin. A very few people had something different to start with - I think KVDyson had tumor testing up front and a different course of treatment - but everyone generally gets the standard package. With luck you won't need chemo but, if you do, a tumor assay can help determine what type of chemo will work on your individual cancer. Note that tumor assays can only be done on live tissue so you have to request it before surgery. If I had to do it over I'd do the assay as well as the geonomic testing, even if I had to pay out of pocket for both. 

     

    Tumor assay and genomic testing

    derMaus, this is so helpful to me, thanks. I sat down last night and ran a report in my genealogy software that told me what every direct ancester I've found so far has died of. On my Scottish side, there's an uncomfortable pattern of colon and stomach cancer, as I mentioned earlier. My great gran and a 3rd gr gran died of ovarian cancer. Lots to discover from genetic testing, I suspect. I discussed Lynch syndrome with my own gyn last week and she seemed surprised I even knew the term.

    I did not know about tumor assays. I'm lucky that my gyn/onc is also a medical school prof specializing in gyn chemo research, so maybe she'll be more open to this type of advance testing than some others might be. But so good to know about this before surgery and before I meet with her next week.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #44
    Tamlen said:

    Thanks so much, Abbycat2. I'm

    Thanks so much, Abbycat2. I'm so glad I posted my questions because your and others' answers make it very clear that there's stuff I need to ask about and ask for before surgery -- and I wouldn't have known half of it.

    When you say, "my feet are no longer the same," what do you mean? Is it numbness only? Something else? So sorry to hear about that -- feet are everything for most exercise, as I learned after years of being a marathoner and then suffering a foot injury that became chronic.

    Acupuncture

    I swear, acupuncture prevented my neuropathy from getting too bad. Taxol (a common chemo drug they use for this) causes neuropathy. 

  • Soup52
    Soup52 Member Posts: 908 Member
    #45
    I have neuropathy, but I

    I have neuropathy, but I think mine isn’t too bad. For me it’s numbness yet strangely sensitive on the top of my feet . I am cautious about going barefoot because it is not recommend. I tried gabeplentin , but it really didn’t help so I quit it. I did buy an expensive wig and for me it was worth it. Most of my chemo was in the winter so it was fine and chemo ended shortly before my high school reunion and I didn’t want to be the poster girl for cancer. My wig actually looked like my own hair. After that it was hats etc all the way.

  • SF73
    SF73 Member Posts: 317 Member
    #46
    Tamlen said:

    Thanks so much, Abbycat2. I'm

    Thanks so much, Abbycat2. I'm so glad I posted my questions because your and others' answers make it very clear that there's stuff I need to ask about and ask for before surgery -- and I wouldn't have known half of it.

    When you say, "my feet are no longer the same," what do you mean? Is it numbness only? Something else? So sorry to hear about that -- feet are everything for most exercise, as I learned after years of being a marathoner and then suffering a foot injury that became chronic.

    If you are a runner

    Running/jogging/ or walking a long distance the day after a chemo treatment is not a very good idea. In my experience it makes the neuropathy worse. Wait a day or two and then continue with whatever exercise regimen you are comfortable with. 

  • ckdgedmom
    ckdgedmom Member Posts: 166 Member
    edited January 2018 #47
    Tamlen said:

    NNCN

    So glad to learn about NNCN, Northwoodsgirl, thank you. My husband and I both read a lot of research and fortunately we have the backgrounds that enable us to wade through a lot of it (my husband's a professor who thinks quantitative statistics are fun, weird man), and finding a site where a lot of material is gathered together is really terrific.

    I will not use a wig if I end up bald. I'm ok with being openly bald when it's hot outside and using scarves otherwise. I get itchy just wearing a wool winter cap, can't imagine how itchy I'd find a wig!

    cold capping

    if you do need chemo and want to learn more about cold capping feel free to message me...I cold capped with great success losing less than 30% of my hair (and some I would have lost to menopause anyway). What you see in my photo is me last month 8 months after my last carbo/taxol infusion...

    it's not easy to do and I totally understand many do not want to mess with it or go through it but for me my hair is a "thing"...I love having long hair and I think it is a leftover thing from childhood because my mom scarred me for life making me have a Dorothy Hammil haircut and the Carol Brady shag when I was a child. I'm also 53 and single and bald would not be a good look on me...

    for a quick reference go to www.wishcaps.com

    again I am getting ahead of the game here as you might be lucky enough to not need chemo (I was Stage 4b) and you won't have to worry about it at all...

  • Wannabeatit
    Wannabeatit Member Posts: 100 Member
    #48
    Gabapentin

    Soup52. How long did you try Gabapentin? I have been on it for 2 years for fibromyalgia and advanced arthritis and I found it took about 6 months to really kick in. I take a total of 500mg @ day which is a relatively small dose. I have heard it doesn’t help everyone. I have had only one chemo treatment so far so I’ll see if it works into the future.

  • derMaus
    derMaus Member Posts: 558 Member
    #49
    Congratulations!

    Grade 1 is wonderful news! Likely you won't have to have chemo or radiation and it can be handled surgically. In our little corner of Cancer-ville, Grade 1 is the best neighborhood of all.  

  • evolo58
    evolo58 Member Posts: 293 Member
    #50
    Funny that you named your

    Funny that you named your cancer. I call mine "the gatecrasher".

    I am guessing that with my symptoms and the pathology report, mine might be a mixed serous (the less-common type of UPSC, but why am I surprised?) unless the biopsy is incorrect (not likely, but a girl can hope). Even if I have 95% endometrioid endometrial cancer and 5% UPSC, the UPSC will still mess stuff up, like that troublemaking kid messing up a party.

    Hope it's Stage 1, Grade 1 (your very best option) garden-variety for you and you'll be on the road to recovery soon! So far, you've gotten the best news you can under the circumstances, and hope it continues to be good. Oh, and a successful surgery and a great recovery to boot, and you can get on with the business of living cancer-free soon.

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    edited January 2018 #51
    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.

    Not Fair

    Tamlen and ckdgedmom have upped the game by naming their cancer!  I don't have any cool names -- maybe Beelzebub will work - Volemort is good but he scared me more than Beelzebub!

    You have got to keep some levity in this game -- good luck with your gyn/onc next week - I should be on the other side of the hysterectomy at that time so I may be able to offer more advice -- lord knows I have taken a lot of advice from these gals.  Got my Belly binder, my pillow, my GasX, my bedroom sanctuary -- a little worried about the golden retriever and his over exuberant love for his mommy - I don't think he will understand 'sore belly'.

     

  • Northwoodsgirl
    Northwoodsgirl Member Posts: 571
    #52
    Wonderful news

    Grade1 endometrial- that is really good if you have that- sounds strange but compared to other more advanced.  So very happy for you!! 

  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    #53
    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?

    I was on the blood thinning

    I was on the blood thinning shots for 30 days.  My daughter had to give them to me because I could do do it myself.  I do not like needles.  I even had my son-in-law give them to me a couple of times because my daughter freaked out because my stomach was so bruised from the other shots.  

    Take someone with you to take notes.  Find a dr that explains things to you.  If the dr does not take time to explain things maybe find another one that will.  You are your own advocate.  Ask if there are any trials you can get into, but have them explain them to you first or give you a paper on.  I was offered a trila and given the paper on it but then I choose to go with what my dr suggested and not go on the trial.  It worked out well for me.  I am a 6 1/2 year survivor from Uterine MMMT cancer Stage 3C Grade 3 cancer.  I was not expecting that back in April 2011.  I had 6 rounds of Carbo/Taxol and no radiation.  My hair fell out.  No big deal for me as I wear my hair short.  It grow back.  Get a port if you have to have chemo it helps and saves your veins.  Ask the dr before surgery to get a sample of the tumor and send it off for genentic(?) testing.  That can help with what chemo they can give it.  Directly after surgery I had a mophine drip but stopped it within two days and just was on advil or tylenol.  I had the abdominal open surgery, took a bit longer to heal but I did. The drs cannot give any type of information until after surgery when the patholgist do their thing to all the samples.    There are a lot of ladies on this site that can give more information to you and I am sure they will be along soon.  Good Luck and sorry you had to join this club.  trish

  • SF73
    SF73 Member Posts: 317 Member
    #54
    Congrats!

    Grade 1 is excellent news. Hope you will not need the chemo and radiation therapy and surgery alone will cure your disease. Best of luck with your surgery!

  • MrsBerry
    MrsBerry Member Posts: 102 Member
    edited January 2018 #55
    You got this, Tamlen. Grade 1

    You got this, Tamlen. Grade 1 is good news, and you will get through surgery. Take good care of yourself along the way.

  • nancer7
    nancer7 Member Posts: 1
    edited January 2018 #56
    I HAD MY ROBOTIC TOTAL

    I HAD MY ROBOTIC TOTAL HYSTERCTOMY ONE WEEK AGO TOMORRROW.  I left the hospital the next day and fdlt pretty good.  I had some bloating, but didn't seem too bad.  It increaseed each day.  By Friday my abdomin looked like the pumpkin that the fairy 

    god-moter made into a carriage for Cinderella. My belly and hip area were so tender and sore.  Nobody told me to expect this.  I thought it would be the easiest surgery I ever had.  The begining post op was great, just progressed to this gigantic belly.

    Anone had this problem?

  • MugsBugs
    MugsBugs Member Posts: 111 Member
    edited January 2018 #57
    Bloating

    I have my surgery tomorrow.  Reading the comments from the other ladies I understand that Gas-X is your best friend after surgery.  I am not sure that this is your situation but you might try it.  I have it packed in my bag to go to the hospital with me.  I already have terrible bloating (I understand that this can be a sign of endomentrial cancer) so I am really concerned about  this aspect of the surgery.

     

    Good luck to you!

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #58
    Wannabeatit said:

    Gabapentin

    Soup52. How long did you try Gabapentin? I have been on it for 2 years for fibromyalgia and advanced arthritis and I found it took about 6 months to really kick in. I take a total of 500mg @ day which is a relatively small dose. I have heard it doesn’t help everyone. I have had only one chemo treatment so far so I’ll see if it works into the future.

    After two weeks on gabapentin

    After two weeks on gabapentin my eyes were twitching so bad I had to stop it. Prior to the gabapentin I had some twitching in my right eye. When I stopped the meds, ALL the twitching went away. So.....it turned out to be a good thing Cool.

    Love, 

    Eldri 

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #59
    Tamlen, I am glad to hear that the preliminary assessment

    - your biopsy- is showing a grade 1 cancer. Hopefully, the pathology assessment of the surgically removed tissues will confirm that. My biopsy indicated that I had a grade 2 cancer which was incorrect. It turned out to be a grade 3 cancer. You asked what I meant about my feet having never been the same after chemotherapy. My toes and the balls of my feet are partially numb and have neither worsened nor improved since the end of chemo in March, 2014. The sensation of sheets and a blanket touching my toes bothers me. Shoes make the numbness more obvious and uncomfortable. I try to ignore it as there is nothing I can do about it. I am forever grateful that I did not develop neuropathy in my fingers. That would be terrible to put up with. I didn’t use Gabapaten because it wouldn't cure it. 

  • XTREME
    XTREME Member Posts: 17 Member
    #60
    MugsBugs said:

    CA125 - Definitely request the CA125

    I didn't know what a CA125 was but my doctor requested it (a simple blood test).  Mine came back at 18 so it has put my mind a little bit at ease.  It will also be good as a baseline number for post-treatment followups.  ckdgedmom - it sounds like you have been through the ringer - I pray El Diablo is gone forever!

    My CA125 is always normal,

    My CA125 is always normal, yet it turned out I had serous papillary endometrial cancer, stage 1a, but with one malignancy in peritoneal wash, biopsy said. 2nd opinion chemo specialist my gyn/onc/surgeon sent me to told me one does have to keep getting that CA125 blood test, but it is still unreliable. Now, I'm resisting having chemo - as I think I cannot tolerate it. I described situation in another post tonight. 

    Best wishes to everyone.

  • XTREME
    XTREME Member Posts: 17 Member
    #61
    CheeseQueen57 said:

    Acupuncture

    I swear, acupuncture prevented my neuropathy from getting too bad. Taxol (a common chemo drug they use for this) causes neuropathy. 

    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).

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