Rachel Posted July 24, 2015 Share Posted July 24, 2015 No experience but I'm sorry! 1 Quote Link to comment Share on other sites More sharing options...
Lady Florida. Posted July 24, 2015 Share Posted July 24, 2015 I have no tips or advice, but hugs and good thoughts to you. :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Tsuga Posted July 24, 2015 Share Posted July 24, 2015 I am so sorry to hear that. :( You are in my thoughts. 1 Quote Link to comment Share on other sites More sharing options...
SparrowsNest Posted July 24, 2015 Share Posted July 24, 2015 I'm so sorry. Hugs and prayers. :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Word Nerd Posted July 24, 2015 Share Posted July 24, 2015 I wish there weren't so many posters able to share advice from personal experience. Cancer sucks. 7 Quote Link to comment Share on other sites More sharing options...
RegGuheert Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Twigs Posted July 24, 2015 Share Posted July 24, 2015 My advice: 1. Get a plastic accordion folder to hold all of the paperwork you will be given. 2. Buy a $1 calendar to slide in the front and write all of your surgery and treatment dates (as well as your doses of meds and when they change) on that. It is super frustrating when doctors ask YOU when you last had chemo or a MRI or PET scan, or when you dropped down on your steroids. My mom had a kidney removed several years ago. Based on that experience, this is what I suggest. Start collecting some of your own medical records now. Blood tests for 2014 and 2015. Last mammogram, bone density, colonoscopy, etc. Imaging reports. Vaccination records as far back as possible. (I was recently asked about chicken pox - I have no record of those diseases!) You will be asked by many different people for details from these records (even in the same visit), so it will help you start collecting and organizing now. Make sure you get actual copies of lab reports, biopsy reports etc. You will probably fill out numerous health history reports - list and dates of illness and surgeries, which providers you saw, etc. Start organizing that info now, and keep adding to it. I started going with my mom for each of her doctor appointments. I keep a spiral notebook to keep track of what she want to remember to tell the doctor, and what the doctor tells us. We keep notes of what medications are prescribed, dosages, and any reactions. This book goes to all appointments. Sometimes we just take the spiral notebook, but sometimes we take the big loose leaf binder along. Keep receipts. My mom had disputes from providers who didn't give a receipt "because the computer was down", so my mom ended up paying twice. Never give cash with getting a receipt. 3. Find a few good friends who can support you through this. You will need to talk, and sometimes your husband or current bestie isn't up for the convo because they are dealing with their own set of emotions as they are trying to support you. IME, people who have gone through similar hard things can be a great resource. 4. If people offer help, take it. Keep a running list of things that could be done, or having someone organize meals through a website like meal train. One of the greatest blessings for me was when someone offered to do my family's laundry or to come clean. … :iagree: First of all., :grouphug: . Some tips: Take a friend with you to the dr. along with your dh. A friend loves you, but is going to be more objective about what she hears and is more likely to remember it than either you or your dh. Give friend permission to ask questions, too. (Questions may occur to her on the spot that do not occur to you.) Friend can also take notes. A friend who has had cancer of some kind would be optimal, imo---or a friend with some medical background. … Yes - have a note taker. :iagree: :grouphug: :grouphug: :grouphug: 4 Quote Link to comment Share on other sites More sharing options...
stephanier.1765 Posted July 24, 2015 Share Posted July 24, 2015 I have no advice either but a hug and lots of best wishes is what I can offer. :001_smile: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
IfIOnly Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
jrn Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Luckymama Posted July 24, 2015 Share Posted July 24, 2015 I have nothing helpful to add, just :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Stacia Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted July 24, 2015 Share Posted July 24, 2015 (((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))) No experience or relevant advice and I'm not the praying type, but I am so sorry this is happening to you and I do care. 1 Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted July 24, 2015 Share Posted July 24, 2015 What a terrible shock. I don't have any good words or advice to help, but you will be on my mind and in my prayers. :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
unsinkable Posted July 24, 2015 Share Posted July 24, 2015 (((EM))) I'm glad people had some advice to give but so sad you need it and what everyone else experienced. Sending good thoughts! :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
umsami Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: As I'm sure you know, Beth Israel has a stellar reputation. They do have an integrative medicine center there, if that is of interest to you. You've received some excellent advice above. :) So glad you caught it early. Wishing you a quick recovery and healing. The only other thing I'd add, if by chance you are the one who handles your health insurance payments in your family, make sure that you put that on auto-pay or something. It's not the time to let that slide. :) 6 Quote Link to comment Share on other sites More sharing options...
Chris in VA Posted July 24, 2015 Share Posted July 24, 2015 Hugs and prayers. <3 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted July 24, 2015 Share Posted July 24, 2015 My previous boss, a veterinarian, had uterine cancer. She has had a great recovery post surgery and is doing very well. I hope that helps you. And my mother had lung cancer and is cancer free for the past 6 years. I will pray for you, for peace and healing. 2 Quote Link to comment Share on other sites More sharing options...
Minerva Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
zoobie Posted July 24, 2015 Share Posted July 24, 2015 My mother was diagnosed at 28. She had a hysterectomy and has been clear since then with no additional treatment. She's 61 now. :grouphug: I hope your treatment goes as smoothly as possible. 4 Quote Link to comment Share on other sites More sharing options...
azucena Posted July 24, 2015 Share Posted July 24, 2015 I am so sorry to hear your news! Best wishes for your treatment and recovery. 1 Quote Link to comment Share on other sites More sharing options...
WinsomeCreek Posted July 24, 2015 Share Posted July 24, 2015 I'm so sorry, hoping for things to go well. 1 Quote Link to comment Share on other sites More sharing options...
Mothersweets Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
PrincessMommy Posted July 24, 2015 Share Posted July 24, 2015 Hugs... 1 Quote Link to comment Share on other sites More sharing options...
Harriet Vane Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Farrar Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: Holding you in the light. 1 Quote Link to comment Share on other sites More sharing options...
chiguirre Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Tammyla Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: prayers :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
goldberry Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Joyofsixreboot Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
AmandaVT Posted July 24, 2015 Share Posted July 24, 2015 I don't have any advice, but :grouphug: . Beth Israel is a great hospital though. My college roommate and (still) close friend is a RN in the TICU there. She loves working there. 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted July 24, 2015 Share Posted July 24, 2015 That sucks. I'm so sorry! I'm praying for the wisdom of your doctors and that your treatment will be quick and effective. :grouphug: Quote Link to comment Share on other sites More sharing options...
HRAAB Posted July 24, 2015 Share Posted July 24, 2015 (((Hugs))) 1 Quote Link to comment Share on other sites More sharing options...
Junie Posted July 24, 2015 Share Posted July 24, 2015 :crying: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Miss Mousie Posted July 24, 2015 Share Posted July 24, 2015 Oh, Ethel, I'm so sorry. Hugs and strength to you and your family as you struggle through it. :grouphug: 2 Quote Link to comment Share on other sites More sharing options...
Cindy in FL. Posted July 24, 2015 Share Posted July 24, 2015 No experience with this, but I am praying for you and your family! 2 Quote Link to comment Share on other sites More sharing options...
TeacherZee Posted July 24, 2015 Share Posted July 24, 2015 Hugs 2 Quote Link to comment Share on other sites More sharing options...
73349 Posted July 24, 2015 Share Posted July 24, 2015 My aunt and grandmother are survivors. Best wishes in your treatment. :grouphug: You have the Hive on your side! 1 Quote Link to comment Share on other sites More sharing options...
edelweiss Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Susan C. Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: Don't let the surgeon do the surgery where they cut up and remove organ(s) through a small incision (sorry my terminology is bad). Evidently, that can spread this type of cancer. I've read two articles recently where the outcome was bad because of that. A search should turn them up, if you need me to try to find it, let me know. The conclusion was to remove all organs intact so cancer cells cannot spread. If it were me, I would ask for surgery asap, then make decisions after when you know what you are dealing with. 2 Quote Link to comment Share on other sites More sharing options...
Incognito Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Miss Marple Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: No advice...I'm so sorry. But grade 1 is good - best wishes for a speedy and complete recovery. 1 Quote Link to comment Share on other sites More sharing options...
Lisbeth Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: Don't let the surgeon do the surgery where they cut up and remove organ(s) through a small incision (sorry my terminology is bad). Evidently, that can spread this type of cancer. I've read two articles recently where the outcome was bad because of that. A search should turn them up, if you need me to try to find it, let me know. The conclusion was to remove all organs intact so cancer cells cannot spread. If it were me, I would ask for surgery asap, then make decisions after when you know what you are dealing with. Morcellation http://forums.welltrainedmind.com/topic/505584-uterine-morcellation-in-hysterectomy-a-warning/?hl=%2Bmorcellation&do=findComment&comment=5597939 My 81yo mother is a three time cancer survivor. She had her uterus removed along with her bladder and one kidney during the second episode when I was barely pregnant with my now-24yo. Last week she went horseback riding and responded to my concerned email by saying that I had "no idea" how frustrating the restrictions of old age were to her: she actually has to ask for help to reach items on the top shelves at the grocery store and after dark, she avoids driving places that are unfamiliar! 6 Quote Link to comment Share on other sites More sharing options...
Mommy22alyns Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: I am so sorry. 1 Quote Link to comment Share on other sites More sharing options...
Guest Posted July 25, 2015 Share Posted July 25, 2015 Keeping you in my thoughts. 1 Quote Link to comment Share on other sites More sharing options...
Kari C in SC Posted July 25, 2015 Share Posted July 25, 2015 My sister had stage 1 last year at age 47. She had hysterectomy a year ago, yesterday. She is cancer free and fine. 1 Quote Link to comment Share on other sites More sharing options...
Penguin Posted July 25, 2015 Share Posted July 25, 2015 ((Hugs)), EM No experience with uterine cancer, but I had cancer. It sucks, and I am sorry that you have to go through this. As someone said upthread, brace yourself for some thoughtless remarks from people. You have received some solid advice, and I don't have much to add. I did think of one thing. Make sure you get a copy of your pathology report. It will have the details about your particular cancer. 2 Quote Link to comment Share on other sites More sharing options...
Twigs Posted July 25, 2015 Share Posted July 25, 2015 I thought of another thing. Get a page protector for business cards. I'm up to about 3 page protectors for myself and another 3 for my mom. I keep all business cards, even if I see a provider only once. You really never know when someone will ask you "who did you see for that consultation, that procedure, etc.?, where did you have that xray, MRI etc.?" I have cards for doctors, nurse practitioners, pharmacies, x-ray/imaging facilities (keep track of those in case you ever need the original films), etc. I also try to date the cards for each visit, so I can easily see when I saw that person. For a provider you see often, you may not want that level of detail on the card, or you can get a new card every year. For example, I still have the business card for the surgeon who removed my gall bladder 30 years ago, even though he's retired now, with the date written on it. I hope I am not overwhelming you with details. I know you are still in shock. Our medical records are always "growing", so organizing our own personal medical records are a work in progress. :grouphug: :grouphug: :grouphug: 6 Quote Link to comment Share on other sites More sharing options...
Ethel Mertz Posted July 25, 2015 Author Share Posted July 25, 2015 Thanks everyone for the advice, good thoughts, and prayers. We told DS12 this afternoon and he had a really hard time. He's upstairs drumming now, after a family supper at the beach. We'll take it day by day. I have a friend who has been through ovarian cancer who is going to call tomorrow to talk me through "cancer anxiety." I'm also going to have pre-surgery Reiki treatments. When I have more news, I'll update in the original post. Again, thanks so much for your support. Quote Link to comment Share on other sites More sharing options...
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