Ethel Mertz Posted July 24, 2015 Share Posted July 24, 2015 I need Hive tips, experiences, and prayers. Earlier this week I had a uterine biopsy. This morning, my gynecologist called with the news that I have uterine cancer. I am waiting now for the oncologist to call (either today or Monday; hopefully, today) to set up an appointment. I will be receiving treatment at Beth Israel Hospital in Boston (in case any of you have experience there). Obviously, I am still in shock. We are telling DS12 this afternoon. So have any of you gone through treatment for uterine cancer? We won't know what stage it is until surgery. They did, however, "grade" the cells and that test came back as grade one of three (one is good). What questions should I ask? Quote Link to comment Share on other sites More sharing options...
happi duck Posted July 24, 2015 Share Posted July 24, 2015 (Hugs) 1 Quote Link to comment Share on other sites More sharing options...
Laura Corin Posted July 24, 2015 Share Posted July 24, 2015 Best wishes for your treatment. 3 Quote Link to comment Share on other sites More sharing options...
Word Nerd Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
lllll Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: And praying. 1 Quote Link to comment Share on other sites More sharing options...
Amira Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Another Lynn Posted July 24, 2015 Share Posted July 24, 2015 Oh no! I'm so sorry. Praying for you. :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Joanne Posted July 24, 2015 Share Posted July 24, 2015 (((EM))) 1 Quote Link to comment Share on other sites More sharing options...
Kalypso Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Joanne Posted July 24, 2015 Share Posted July 24, 2015 (((EM))) 1 Quote Link to comment Share on other sites More sharing options...
Annie G Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
JustEm Posted July 24, 2015 Share Posted July 24, 2015 Hugs and prayers. No advice though. 1 Quote Link to comment Share on other sites More sharing options...
snickerplum Posted July 24, 2015 Share Posted July 24, 2015 I'm so sorry. ((())) 1 Quote Link to comment Share on other sites More sharing options...
SparklyUnicorn Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
creekland Posted July 24, 2015 Share Posted July 24, 2015 No advice at all (sorry), but definitely tons of :grouphug: and prayers/well wishes that all goes well... 1 Quote Link to comment Share on other sites More sharing options...
Ellie Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: :grouphug: :grouphug: I'm so sorry. No advice, just hugs and prayers. 2 Quote Link to comment Share on other sites More sharing options...
I talk to the trees Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Halftime Hope Posted July 24, 2015 Share Posted July 24, 2015 I'm so sorry--can surely empathize with the shock. Sending you hugs, and sending up prayers for your healing. Questions to ask: -- how quickly does this have to be treated? Immediate surgery and immediate chemo or radiation, or do I have time to discuss options? -- who would you send your mother to for a second opinion? -- what is the course of treatment like in the majority of cases if it turns out to be low grade, medium grade, or high grade? -- what have your patients done for themselves to be healthy and give themselves the best chance of success in treatment? Ethel, if you are interested in complementary medicine, ask them for a referral to other providers as well. Those would be my initial questions. YMMV. Prayers for you to find the path to healing that best suits you! 16 Quote Link to comment Share on other sites More sharing options...
ondreeuh Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: If you don't mind me asking, what were your symptoms that led to a biopsy? 2 Quote Link to comment Share on other sites More sharing options...
Spryte Posted July 24, 2015 Share Posted July 24, 2015 I'm so sorry. You'll be in my thoughts! 1 Quote Link to comment Share on other sites More sharing options...
redsquirrel Posted July 24, 2015 Share Posted July 24, 2015 my mom had uterine cancer. It was discovered very early and her prognosis was good. She quickly had a hysterectomy (but they left her ovaries) and that was it. She didn't need any further treatment. She has gone for yearly exams, she always did which is why it was found so early, and everything has been perfect. It has been almost 20 years since, I just realized. It was before I was married and I was married in 98. She called me and asked me to come stay with her for at least a week, something she has NEVER done, because she knew she needed to just rest for recovery. It was autumn and I drove her around and we bought pumpkins and mums and I helped decorate her front porch. Even she admits she was a little weird, lol. Her recovery from the hysterectomy was long. They told her it would take about 8 weeks and it really did. She was a very good patient (not easy for an old nurse) and it went smoothly. It is possible that now they would suggest a course of radiation treatment for even such a mild cancer. My mom suspects her cancer was caused by prempro. It was right before they pulled it etc. 12 Quote Link to comment Share on other sites More sharing options...
Ethel Mertz Posted July 24, 2015 Author Share Posted July 24, 2015 :grouphug: If you don't mind me asking, what were your symptoms that led to a biopsy? Post menopausal (a year or more after menopause) bleeding. Then my doc ordered a vaginal ultrasound, got the results, sent me to a gynecologist, and I had polyps and fibroids biopsied on Monday. Just got the call this morning from the gynecologist. Quote Link to comment Share on other sites More sharing options...
JadeOrchidSong Posted July 24, 2015 Share Posted July 24, 2015 Praying for you. 1 Quote Link to comment Share on other sites More sharing options...
Tiberia Posted July 24, 2015 Share Posted July 24, 2015 I'm so sorry. HH gave a lot of good practical advice. The best advice I have is to tell you that the place you're at right now is sometimes the worst part of cancer: the new diagnosis, the shock, the telling loved-ones and friends, the unknown, the wondering about life and death and treatment, the new vocabulary of cancer, the disbelief that you are now a cancer patient, the sleepless nights. Please be gentle with yourself and with others. If you are a researcher, be careful not to read too much online. Read enough to be informed and encouraged, but not so much that you become depressed. Find things that give you peace and strength: favorite movies and music, etc. Let people know it's ok to cry and to laugh around you. You can do this. You will do this. 17 Quote Link to comment Share on other sites More sharing options...
plansrme Posted July 24, 2015 Share Posted July 24, 2015 I have an acquaintance who was diagnosed back in the 60s. She lived to be well into her 90s, hale and hearty to the end. I wish you as successful a recovery. 12 Quote Link to comment Share on other sites More sharing options...
trulycrabby Posted July 24, 2015 Share Posted July 24, 2015 I am sorry. :grouphug: Well, surgery is first and since you have a cancer diagnosis, an oncologist will do the surgery. Don't let anyone who is not an oncologist do your surgery. You are in good hands at Beth Israel, but since you are in the northeast, I recommend getting a second opinion at perhaps Sloan Kettering. You won't know about the possibility of chemo, radiation, or brachytherapy until the cancer has been staged and graded, so right now it is all about the surgery. I don't know if they would even consider keeping the ovaries with ovarian cancer, so you might ask that question next doctor visit. Hyster Sisters has an active cancer sub-forum; I recommend you read as much as possible in the next few days and weeks. Inspire.com has some very active cancer forums; I will check this afternoon to see if they have one for uterine cancer. Redsquirrel's comments about recovery time were spot on: You will need a minimum of eight weeks to recover, and please be gentle with yourself during this time. Doing too much can cause scar tissue in the peritoneal cavity, which can cause a lot of pain and possibly more surgery later on. :grouphug: 9 Quote Link to comment Share on other sites More sharing options...
displace Posted July 24, 2015 Share Posted July 24, 2015 I would ask for the biopsy to have a second opinion, requiring only a second pathologist to look at the slide already taken. (Hugs) Some places do this as a routine for cancer dx so it may already have been done. 4 Quote Link to comment Share on other sites More sharing options...
Alessandra Posted July 24, 2015 Share Posted July 24, 2015 ((((Hugs)))) Quote Link to comment Share on other sites More sharing options...
prairiewindmomma 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. 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. As far as medical advice goes: 1.I recommend Hyster Sisters as well. 2. Ask questions about the surgery. There are certain surgical techniques which minimize the likelihood of cancer seeding the rest of the abdomen. (IE--don't allow them to use the morcellation technique.) 3. If you need chemo after this, ask about getting a port upfront. IMO, it's so much easier to start with one than to wait until all of your veins are blown and your body is run down from chemo and struggling to heal. Hugs! It is a lot to wrap your brain around. Cancer sucks and I'm sure this isn't how you wanted to spend your summer. My thoughts and prayers are with you. 17 Quote Link to comment Share on other sites More sharing options...
Orthodox6 Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: Quote Link to comment Share on other sites More sharing options...
Miss Tick Posted July 24, 2015 Share Posted July 24, 2015 My aunt had this and is doing great now, a few years after surgery. She did mention that she can't use hormone replacement therapy to deal with menopause symptoms which I assume is because of this, so be aware that that may be a possibility. ((Hugs)) 2 Quote Link to comment Share on other sites More sharing options...
Mom23Boys Posted July 24, 2015 Share Posted July 24, 2015 Praying for you. I'm so sorry. 1 Quote Link to comment Share on other sites More sharing options...
Corraleno Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
LifeLovePassion Posted July 24, 2015 Share Posted July 24, 2015 I'm sorry. 1 Quote Link to comment Share on other sites More sharing options...
Reefgazer Posted July 24, 2015 Share Posted July 24, 2015 I'll be thinking of you and hoping for the best. I have no extensive experience with uterine cancer except for a cousin who had her cancer caught early, had a hysterectomy, and hasn't had an cancer issues since. Hopefully, since it was caught early, you will have the same good outcome. 2 Quote Link to comment Share on other sites More sharing options...
texasmama Posted July 24, 2015 Share Posted July 24, 2015 Oh Ethel! I am so glad you found it at the first stage. I know nothing personally about this but will pray for you and expect the very best outcome. :grouphug: 2 Quote Link to comment Share on other sites More sharing options...
Laurie4b Posted July 24, 2015 Share Posted July 24, 2015 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. Be prepared for people to say stupid stuff to you. Your diagnosis of cancer will trigger their own experiences with cancer and people seem to lose their filters, thinking they are being empathetic but really reprocessing their own grief. I don't know anyone who has been dx'd with cancer who didn't have people come up to them and talk about loved ones who died of cancer! Ugh. I'm telling you ahead of time so that you realize it's what everyone experiences. When you are in the stage of uncertainty (e.g. you won't know what stage till after the surgery), your brain will search for some certainty. Those stories can seem like omens when your brain is uncertain. I got quite assertive and would tell people that it wasn't helpful for me to hear. (You can also say that when people are asking questions that you don't want to answer: "Right now going into all the details isn't helpful to me (unless it is and you want to). I hope you understand." OR--whatever else you want. Others need to adjust to what is comfortable for you, rather than you trying to adjust to their unintentionally unhelpful conversation. Also be prepared for lots of emails about alternative therapies and from people selling vitamins, supplements, etc. Do not take anything other than your regular food without talking to your oncologist. Here's the deal: the cancer cells are the fastest growing cells in your body. Guess which cells uptake the most nutrients? So if you are flooding your body with abnormally high levels of this or that vitamin or supplement, guess which cells get the most? And in some cases, the cancer cells can use that to protect themselves from radiation or chemo. (Hopefully, you won't have to have either, but if you do, be aware of this. It's probably not too relevant with surgery only as treatment, though I would ask your oncologist. ) Try to get a separate support system for each person in your family. It's helpful for you to have some friends to process things with that you won't process with your dh and same for him. It can be helpful for your son to have a coach, Sunday school teacher, Scout leader, etc. check in with him about how he's doing as well. Accept people's offers of help. Unless you tend to prefer to process life in your own little woman-cave, if someone you know who's adminstratively minded asks what she can do to help, ask for a care calendar to be set up. It is okay to let people love on you through practical expressions of caring such as food, housekeeping help, yard work, etc. You get two things: the actual help and the sense of being cared for. People want to help. 16 Quote Link to comment Share on other sites More sharing options...
Wildcat Posted July 24, 2015 Share Posted July 24, 2015 I have zero advice, but the fact it was caught early is a good thing. Add me to the chorus of those wishing you the best. :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
NorthwestMom Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Cinder Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted July 24, 2015 Share Posted July 24, 2015 Hugs. :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 Zero advice, BUT one of my good friends got this diagnosis 2.5 years ago, got the treatment, and has been cancer-clean in all the follow-up testing. Not that it was a big happy party...but she came through it, and is as strong and healthy as ever. (((EM))) Quote Link to comment Share on other sites More sharing options...
Catwoman Posted July 24, 2015 Share Posted July 24, 2015 I don't know what to say except that I am so sorry and I hope it is at a very early stage so the surgery cures you immediately and completely. :grouphug: What a terrible shock. :( 1 Quote Link to comment Share on other sites More sharing options...
BlessedMom Posted July 24, 2015 Share Posted July 24, 2015 ((((((Hugs)))))) 1 Quote Link to comment Share on other sites More sharing options...
ScoutTN Posted July 24, 2015 Share Posted July 24, 2015 Praying for you. Sorry you are going through this. Glad that some pp here have good advice for you. 1 Quote Link to comment Share on other sites More sharing options...
TianXiaXueXiao Posted July 24, 2015 Share Posted July 24, 2015 Others have really given great advice. Praying for you. 1 Quote Link to comment Share on other sites More sharing options...
Debbi in Texas Posted July 24, 2015 Share Posted July 24, 2015 You will be in my thoughts and prayers. 1 Quote Link to comment Share on other sites More sharing options...
PuddleJumper1 Posted July 24, 2015 Share Posted July 24, 2015 :grouphug: :grouphug: No experience to share but :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Soror Posted July 24, 2015 Share Posted July 24, 2015 (hugs) 1 Quote Link to comment Share on other sites More sharing options...
Liz CA Posted July 24, 2015 Share Posted July 24, 2015 Grade 1 usually means least aggressive. From what I hear from others who have been through this, your chances are excellent when caught at an early stage. As you mentioned, staging is done during / after surgery and pathology reports. I would recommend consulting two physicians for all major decisions. At least one should be a gynecological oncologist - meaning a specialist in cancers of the female organs. I would also look into adjunct care options, supplements to support your immune system, perhaps see a naturopath in conjunction with the gyno-oncologist to hit this on all fronts. 4 Quote Link to comment Share on other sites More sharing options...
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