Newly diagnosed

longlegs

Would anyone care to comment on what kind of pain they experienced while waiting for surgery? A small amount of spotting and what felt like menstrual cramps at age 67 led me to see a gynecologist that did an US and a biopsy. The biopsy showed group 1 cancer cells. I have met with a gynecological oncologist and I am scheduled for a hysterectomy December 27. (Merry Christmas and Happy New Year to me! )

I would like to know if anyone else has experienced nausea, constipation, headaches and muscle weakness?

I am still working as an LPN doing 1:1 care with a 20 year old developmentally delayed, autistic young man. I am trying to stay busy, getting my house cleaned before I have to go on light duty. I am trying to stay in the moment, but at times, I am all over the place.

I am grateful that this board is here and for any answers I can get.

Forherself

Welcome Longlegs, so sorry to read about your diagnosis. I am an RN and was 67 3 years ago in about the same spot. I didn't have your symptoms, just the bleeding. I think you mean type 1 cells, and that is good news. We call that the garden variety of cells and it does have a much better prognosis than type 2 cells. Waiting is the very hardest. It is shocking to hear the word cancer, but there are a lot of reasons you should be very hopeful. After reading many medical articles on endometrial cancer, I can say type 1 endometrial cancer is more often diagnosed at an earlier stage, and many times does not require treatment other than the total hysterectomy. It is slower to spread and when it does more likely to be local (in the vagina) and that is easier to treat. There is always the exception to this outcome, so they do a total hysterectomy, lymph node biopsy, and pelvic wash, and omenectomy. There is lots of information here about recovering from your surgery. There are a few new women here who have just had surgery too. I had a very easy recovery after both a laparoscopic and abdominal incisions. If you have specific question please ask. Keep busy. And know that your emotions are safe here.

Kathy G.

Hi Longlegs & welcome to the group!

Hopefully you will visit often since a diagnosis has been confirmed. There is so much info and support here.

I assume that by saying your cancer is 'group' 1 you mean grade 1 since the stage cannot be confirmed until after surgery. I am also assuming as a LPN that you know the lower the grade the slower the cancer is growing.

So that part is good news!

I had minor, intermittent cramping prior to my surgery, but I had assumed the cramping was from one of the UTIs I had throughout that year.

No other pain.

Keeping busy prior to your surgery is a good way to distract yourself. I had minimal difficulty with recovery from my hysterectomy...only took tylenol the first few days. I was fortunate though that I only required surgery and my husband, kids and sister were there as needed.

I got diagnosed in November 2012, but didn't have surgery until January 2013 so yeah...it was also a Merry Christmas to me, but the holidays did keep me busy. So you can also look at the timing as being good in a way.

Best of luck with the surgery! Others will be a long soon.

Kathy

Harmanygroves

Hey, welcome!

I think you meant Grade 1, endometrioid adenocarcinoma. It is the most common type of endometrial (uterine) cancer, and as Forherself mentioned, it can often (but not always, to be fair) be taken care of by surgery alone, which is wonderful when that is the case. For example, I had grade 1 cancer, but two additional "poor" prognostic factors that made radiation treatments necessary, and I will be very closely monitored because of those factors. More details on that after your surgery, but one step at a time.

Endometrioid adenocarcinoma is the cancer that I have, and I have to admit I don't ever call it "the garden variety," as that likens it to a garter snake--a non-harmful one. At the end of the day, a snake is a snake. I haven't met one woman with endometrioid adenocarcinoma who think of it as "non-harmful," but it is indeed the type of uterine cancer you want, if you must have it. Around me, you can certainly call it the "most common" uterine cancer, and that is accurate and appropriate. No offense meant to previous post, but I have never called my cancer "the garden variety," nor will I ever.

Even better than Grade 1 Endometrioid Adenocarcinoma is catching it before it actually takes root in your myometrium, the lining of your uterus, or the endometrium, the uterine wall. That is the best type to have, I think ! You won't really know details of your cancer "stage" until your doctors are able to fully examine your uterus and get work done by a pathologist after your surgery, but breathe a sigh of relief that you are grade 1. Slow-growing! whew.

There are women here who have the more aggressive types of uterine cancer (such as serous), but we also have plenty of women here who have had to deal with radiation and chemotherapy because of endometrioid adenocarcinoma. You won't find out until later if you will need extra treatments, so the best advice is take it one hurdle or appointment at a time. Keep a journal or notebook handy to keep great track of dates and appointments. Ask your doctors if you can record appointments on your phone, as that can be helpful.

When I was first struggling with my grade 1 cancer, prior surgery I had cramps. I had some slight spotting before that. If you are able, take some ibuprofen and try to do whatever keeps you in your "happy place." I love it that you are putting things in order now to prepare for light duty. You may want to make sure you have some really comfy loose pants and tops before your surgery on December 27th. We are all here for you <3

Deb 2 <3

BluebirdOne

https://csn.cancer.org/discussion/324482/newly-diagnosed

Welcome, longlegs.

I did not personally have any pain, cramps, or bloating, my only clue were two teeny tiny barely pink spottings, two weeks apart, easily dismissed. You might ask your GO if a scan or further tests/exams are warranted pre-surgery because pain is not normal but maybe is not related to any cancer. Routine pre-surgerical tests I had were a chest xray, an EKG and of course blood work. Good luck with your surgery and let us know if you have any more questions.

Denise

longlegs

Thank you everyone!

I really appreciate the time you took to respond! This board has some very good information and it does make me feel better to know there are others that have traveled the path before me.

I have told a few people about my diagnosis. I don't really want to share my news during the holidays. I don't want the holiday tainted with anxiety and sadness. I would like to have a word to describe having cancer. Does anyone have a way to talk about their diagnosis without giving the cancer power? I think having the proper words would help with giving energy to fight and feel healthy. I don't want to say "I have cancer," because I feel it gives the cancer too much power.

Wishing everyone a wonderful Sunday, full of Light!

longlegs

Harmanygroves

https://csn.cancer.org/discussion/comment/1691215#Comment_1691215

I often say "I've been dealing with a cancer diagnosis this year." People are so afraid of cancer that it's hard to find the right language, but it occurs to me that there have been such good advances in treatments for people with cancer that it's now often treated as a chronic issue --a longterm problem--rather than a death sentence. Back in the '80s and '90s, to be HIV positive was also considered a death sentence. No longer. I have a friend who recently disclosed her HIV positive status, and she has a full, active, vibrant life and is the glowing picture of health.

My dear close friend recently diagnosed with breast cancer mentioned that despite dealing with all the unknowns, she feels better now than she's felt in many years.

Back to your question. A lot of people really chafe at phrases such as "She's battling cancer," or "She is on a journey with cancer." War and travel metaphors abound in American / European culture, but for whatever reason, people don't always like those. My phrase of choice---"I'm dealing with cancer," works for me.

Forherself

This article has some good advice. https://blog.dana-farber.org/insight/2019/03/how-to-tell-someone-you-have-cancer/

I did not tell many people. I was frustrated when the people I did tell asked me questions I could not answer. I just didn't know. And one friend who was dealing with cancer when I was diagnosed went to a counsellor. The counsellor gave this good advice. Just say I am not having a good day today when you would rather not discuss it. Hopefully though, you will be early stage .

NoTimeForCancer

longlegs, good for you for asking for answers on the symptoms you described, better yet is to hear you were turned over to a gyn onc who knows what to look for during surgery. As mentioned, there are usually pre-surgery tests done that may/may not give you answers to the pain you are experiencing, but worth mentioning just in case.

As for not telling anyone, it won't be until after the surgery that you will find out really what you are dealing with anyways, it may turn out that surgery is all you need - but again - you won't know until afterwards so there is no rush.

longlegs

Thank you everyone for your suggestions. It is comforting to have a network that I can be very honest with.

I have been spending time outside, since here in Georgia we have some beautiful weather. Cool and clear. Perfect for walking the dog in the woods and raking leaves. I have lots to be thankful for!

Harmanygroves

https://csn.cancer.org/discussion/comment/1691250#Comment_1691250

That's the way to do it. Minute by minute, you may find your thoughts and emotions may cycle---or at least, mine did. The best way to deal with the waiting is to do your favorite activities. Thinking of you, and grateful for all of our women here (and our supportive guys too).

loulou12

https://csn.cancer.org/discussion/comment/1691171#Comment_1691171

I am newly diagnosed at 75 yrs. old. I have never had surgery or anesthesia in my life. I have had 2 biopsies. First one May 3 came back as negative, however my GYN was skeptical for US ...two one regular, one transvaginal showed endometrium very thick. had another biopsy recently, came back as adenocarcinoma GRADE 1 endometria. I have been on provera for 30 days now, no bleeding. I have an appt. tomorrow with GYN oncologist. I am so terrified, so depressed, cry off and on for the past week. I am praying that being Grade 1 the staging will be okay. So much anxiety, I can't stand it really. I am a mess. :(

loulou12

https://csn.cancer.org/discussion/comment/1691165#Comment_1691165

https://csn.cancer.org/discussion/comment/1691165#Comment_1691165

You waited so long to have surgery? Did it spread? My newly diagonosed is:

I am newly diagnosed at 75 yrs. old. I have never had surgery or anesthesia in my life. I have had 2 biopsies. First one May 3 came back as negative, however my GYN was skeptical for US ...two one regular, one transvaginal showed endometrium very thick. had another biopsy recently, came back as adenocarcinoma GRADE 1 endometria. I have been on provera for 30 days now, no bleeding. I have an appt. tomorrow with GYN oncologist. I am so terrified, so depressed, cry off and on for the past week. I am praying that being Grade 1 the staging will be okay. So much anxiety, I can't stand it really. I am a mess. :(

I have 2 trips coming up one July 16 and another Aug. 30. I am praying I do well with Da Vinchi which I think the surgeon will do. I will know more tomorrow. I am so depressed and so much anxiety. I am terrified

BluebirdOne

loulou12,

We are so happy that you found your way to us, I am sorry that you are feeling so terrified and anxious and hopefully we can help to alleviate some of your anxiety. First things first. The initial days of trying to get a dx and scheduling visits and procedures are very difficult when we are facing a new cancer diagnosis. All of this is common and normal. The difficult part is that we are trying to come to terms emotionally with our diagnosis while physically getting tests, scans, or surgeries. Most of us were in your shoes not long ago, so we understand your anxiety and fears. It sounds like you have Grade 1 (the best grade for cancer, the slowest growing and least aggressive) so that is a positive for you.

Once you have had your hysterectomy, they can stage you and confirm your type and grade. Most uterine cancer is Grade 1, Endometrioid. Once they confirm your stage, grade and type after surgery they will tell you what treatments they recommend. Most of us had the Robotic Da Vinci hysterectomy, which is much easier to recover from than open surgery. I was in the hospital only overnight, had a few days of downtime and felt pretty good one week later. However, surgery is still surgery and it will be 6 weeks before you are allowed to lift things which might be a problem if you are going on a trip. Your docs will advise you. Hopefully, you will be lucky and that will be all the treatment that you will need, but prepare yourself in case the final pathology is not endometrioid, or your stage is higher than expected, but the odds are on your side.

I would urge you to read our faqs and suggestions at the top of the board. Not all of the information will pertain to you but there will be links to topics that will be very helpful to you.

What helped me during dx and treatment was educating myself about what I could expect and how to cope with all of the information. We are here to answer questions and give you support as we are able. You are not alone. Let us know what your GO recommends.

Also, you can click on our photos to see our biographies, many who have had the same surgery and dx. This was very helpful to me in the early days.

xxoo

Denise