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I'm back and hoping for help please :(

nateandkatesmom
Posts: 40
Joined: Jan 2017

When I first posted (1/7/17) I was given the common sense response to wait and see what the results were before asking questions.

Well, the tests are stretching out and I still have no concrete results.

So please, can you humor me and tell me your thoughts? (which I know are not medical opinions, just personal experiences.) I am 53 years old.

I started having bleeding in Oct 2016 following almost one year of no periods. I had been on oral birth control up until the fall of 2015, skipping the placebo because I had such difficult periods.

In October I called for an appt. which was scheduled for Dec. My PCP did bloodwork to see if I had reached menopause and it showed high estrogen levels.

In December I had a check up and Pap; still having bleeding or spotting daily since late October. Pap showed atypical glandular cells, endocervical type.

Decembger 27th I had a regular sonogram and one w/saline as well as endometrial biopsies. I have "complex endometrial canal w/ probable polyps." The endometrial canal is 17.8 mm. My left ovary has a cyst of 30,3 mm. My right ovary shows prominent follicles. The endometrial samples were negative, so I am now scheduled for a D&C on Febuary 14th so he can use a camera to get better samples as well as the polyps.

January 11th was an office visit to discuss all of the above. I was also scheduled for a colposcopy for the 7th of Febuary, but the doctor moved that up to January 13th because he said Febuary 7th was too long of a wait. At that appt. he also started the process for me to be scheduled for a D&C which will be on the 14th. There were two "suspicious" areas that he biopsied. I was told the results were "abnormal, and the doctor would discuss it with me at the pre-op visit but it was nothing to worry about.

So, my pre-op visit is the 6th. I know that I have atypical glandular cells, endocervical type. I know that I have abnormal cervical biopsies, a high estrogen level and a cyst on my ovary. I know I am still having bleeding that becomes much worse with any type of activity. I am not however, anemic.

I am concerned about "atypical glandular cells." I am concerned about what is causing my high estrogen level and my ongoing bleeding. I am concerned about the ovarian "cyst" being something else. Once I have the D&C I will then have another waiting period for the biopsies. If there is something, my doctor will operate with a gynogological oncologist to preform a hysterectomy.

The waiting, which started with the prolonged wait for an appt. is wearing me down. On Friday the 3rd I received a letter recommending that I schedule an ultrasound or MRI as a follow up to my mammogram d/t level 4 breast density.

Should I ask for some type of CT or MRI of my pelvic area before the D&C? I have been experiencing horribly sharp pains in the area of my left ovary as well as extreme cramping. I was told to take 800 mg of ibuprofen but it doesn't help. I alternate heat and cold. I know I need to ask the doctor, but I so want to hear from someone, anyone, who has experienced something similar. I have no one to talk to except my husband, and he repeats that the office said there is nothing to worry about.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1436
Joined: Jun 2015

Hi nateandkatesmom - I'm sorry I don't have answers to your questions. But I wanted to welcome you to the board. You will find a lot of smart ladies here that are willing to share information and provide emotional support. Please don't get ahead of yourself. I know that is easy to say and hard to do! Your biopsy results will be the starting point of information as far as cancer or no cancer and what the next steps will be. Until you have that, it is only a guessing game and that will drive you nuts.

Please come back and let us know your results when you get them!

Love and Hugs,

Cindi

nateandkatesmom
Posts: 40
Joined: Jan 2017

I submitted xxxxx's after reading Cindi's response to my initial post and resolved to await results. However, the biopsies keep happening and I need someone to talk to. I understand Cindi's response, but am hoping that since it has been another month and I have had more procedures someone may be able to give me feedback.

Thank you!

Dorothy

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Hello nateandkatesmom,

People on this board tend to be cautious about drawing conclusions or offering advice before medical diagnoses are available, and for good reason. No one knows what your situation is until the test results are in. But since you've asked for honest answers--

My situation pre-diagnosis was different from yours, so I'm afraid I can't offer any insights based on that. I had less time between the different steps--sonogram, D&C, hysterectomy--than you seem to have had. That may just be differences between providers or it may reflect something about our symptoms. For me I think everything moved pretty quickly from the time I first told my GP that I was having occasional spotting five years after my last period. I think that was because she and my gynecologist realized that cancer was likely. Once my gynecologist did an exam and a sonogram, I suspect that she was pretty sure it was cancer, although she didn't say that until after she did my D&C and got the results that showed some kind of cancer. The type, stage, and grade weren't known until after my hysterectomy a month later.

As I was going through all those steps, I had a growing feeling that I was being pulled onto a conveyer belt in a giant medical machine--that things were out of my hands, that everyone around me was familiar with all these steps and already knew what the inevitable result would be. I guess now I just take that part for granted. Up until the time I received the D&C results that confirmed there was some kind of cancer, I held out hope that it would be something else, but I was doing enough reading in reliable sources to know that cancer was the most likely explanation. So when I did hear the C word from my gynecologist over the phone, it was sad and terrifying but not a big shock.

One of the things I learned when my mother had colon cancer years ago was that when doctors seem concerned about something, we should pay attention to that, even if they're not making diagnoses or offering conclusions. It might sound silly to say that, but that was my introduction to the world of cancer.

So I guess all of this is a way of saying that you're right to be concerned about "abnormal" results and the finding of atypical glandular cells (there may be benign conditions that can have that finding, but I'm not aware of them). One way to prepare yourself for the possibility of a cancer diagnosis might be to read through the stories of women on this board. They will reassure you that life does go on and that all of us can handle much more than we knew we could before we had cancer. I also find it reassuring to know that there are so many different treatment options now. A diagnosis of endometrial cancer is not a death sentence.

I hope your doctor will give you straightforward answers to your questions on Monday. I doubt that a CT scan would be recommended before the D&C, but it's something to ask your doctor about. And make sure he's aware of all your symptoms.

I hope that others with symptoms similar to yours will respond. Please keep us posted and know that there is a group of smart, supportive women here to help you in any way they can.

Rebecca

 

nateandkatesmom
Posts: 40
Joined: Jan 2017

 I totally understand Cindi's response to my initial post. However, as this continues to stretch out I do feel like I have no control, and like my life revolves around waiting for the next biopsy results. The "atypical glandular cells" result of the Pap and now the abnormal cervical biopsies are telling me there is something to worry about. I understand them telling me on the phone not to worry and that the doctor will discuss it with me, but it will be 10 days since I learned of the abnormal results when I finally get to see the doctor. He has told me he will be surprised if it is cancer, but in that same conversation he told me a gynecological oncologist would perform the hysterectomy alongside him if it was cancer "to increase the 5 year survival rate."

I agree that cancer does not equal a death sentence. My thoughts are not so much about death as about what the time frame will be. January 10th  my husband had a long awaited consult with a neurosurgeon re: surgery for cervical stenosis. He is in constant pain and has now lost dexterity and sensation in areas of both hands. Knowing that he was waiting for a call back re: surgery I then found out on January 11th that I was to be scheduled for a D&C.  And by all indications I am prepared to hear that I need a hysterectomy.  So I need to get myself situated so he can proceed. He has been dealing with this since September of 2015, and is so worn down. Of course, I know we can't schedule to take turns for our bodies to break down, but...  LOL. I know. Things will take their course and we will work it out.

As far as reading other threads on this board I have tried but quickly get lost. Since I don't know if, I don't know exactly where, and I don't know exactly what I just hop scotch around and confuse myself. Which is why you all wisely suggest that one knows if, where and what before asking more detailed questions. Of course, regardless of what I learn on Monday there is still the D&C awaiting to get better endometrial samples. And as you say, waiting after the probable hysterectomy for the specifications.

I am totally rambling and writing in circles, I know. If anyone reads this and can speak more about the atypical glandular cells endocervical or the high estrogen level I would love to hear from you.

Thanks in advance!!!

Dorothy  

Double Whammy's picture
Double Whammy
Posts: 2821
Joined: Jun 2010

I have never had a scan nor an MRI.  But I had Stage 1, grade 1 endometrial cancer and although I worried initially that none of this was ever done, there really was no reason for it.  Had my biopsy been more suspicious, I'm sure it would have happened.  However, it sure doesn't hurt anything to report your symptoms and to ask about these things.  And you can do that easily via a phone call or via email.  I'd rather ask questions about things I'm worried about than to not ask questions and not have a conversation about them.  You may find that all of these things you're experiencing are due to pre-menopausal changes taking place and they will resolve themselves, but you're worried so you should ask about this.  And keep reporting things you're concerned about - if you don't they assume you're just hunkey dorey.

After having had FOUR normal endometrial biopsies over my lifetime and waiting for my fifth, I asked my gyn if she would perform a prophylactic hysterectomy if this biospy was normal.  She actually agreed (I just could not go through any more of those stupid biopsies and did not want the worry - something was wrong afterall).  I was 62 at the time, tho, but I was only 5 years postmenopausal.   This fifth and last biopsy did show endometrial cancer, so it was rather a moot point, but even to this day I feel good that we had the conversation.  If all is well after your procedure on the 14th (and I hope it is), you might want to think about discussing a prophylactic hysterectomy with your gynecologist.  You are considerably younger than I was, tho.   I have this non-medical theory that if things do not get better (in my case, I had postmenopausal bleeding), then something just isn't right.     This is just MY theory, absolutely nothing medical.    I did not want to wait until I was 70 and then have to have surgery.   You have a long way to go to be a surgical risk because of age.

Good luck

Suzanne

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1436
Joined: Jun 2015

Hey Suzanne, Great new picture! You look so good. :-)

MAbound
Posts: 689
Joined: Jun 2016

Love the new picture Suzanne! 

nateandkatesmom
Posts: 40
Joined: Jan 2017

I have my pre-op on Monday and am definitely taking a list of things to discuss. Re: the hysterectomy I think it is going to happen. My endometrium is extremely thickened and having bleeding since October is maddening. I am fine with that surgery happening.

I think I am menopausal, although the blood work shows high levels of estrogen. I had almost one year without periods. Then a never ending one started in October of 2016. I did ask about going back on the birth control pill but due to my age he doesn't recommend it. It's funny, I only started birth control when my periods became unbearable, and it was a huge relief.

Thanks again for sharing your story and responding to me!

Dorothy

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2459
Joined: Mar 2013

Dorothy, are you dealing with a gynecologist or a PCP?  I can't really tell.  I would recommend working with a gyn who does nothing but the female reproductive system.  PCPs are great, all around people, but when I have one area that needs attention I don't mess around.  My gyn did my D&C and as soon as cancer was detected she immediately turned me over to a gynecologic oncologist.  She was not so arrogant to think she could 'do it all'.  I didn't know gyn onc's existed up to this point - my ignorance - but would say today any woman with gyn cancer should be working wtih one.  

Again, not sure if you are working with a gyn or a gyn onc, but after all this time if you are not maybe you can try there for help.  

nateandkatesmom
Posts: 40
Joined: Jan 2017

I had bloodwork @ my PCP and also had to get a pre-op clearance for the upcoming D&C. The exam, Pap, and everything else have been with a gyn. I totally agree with what you are saying about specialization.

My gyn said that if anything indicates cancer a gynocological oncologist will work with him on the hysterectomy. This will be someone from a major teaching hospital in our state. These are oncologists involved in research as well as practice. When the gyn mentioned Cleveland Clinic I felt reassured that I could have care locally while also receiving the expertise of a larger medical facility.

I, too, did not really understand the importance of an oncologist being involved in the hysterectomy until the gyn explained that it improved the 5 year survival rate. However, I first need to be told the biopsy results from my colposcopy and also complete the D&C so better endometrial samples are obtained. I am thinking that if the D&C is on the 14th it will be at least the 21st of Feb. before I receive results.

MY QUESTION:  Are you aware of any benign conditions where there would be atypical glandular cells endocervical type?

Thanks again.

Dorothy

Soup52's picture
Soup52
Posts: 861
Joined: Jan 2016

Just like Notime, I had a d+c with my gynecologist and when the results came back I was immediately referred to the gyncholigist oncologist. I had two week waits between results and meeting with gynecologist. I live in a mid sized city, but we do have our own cancer center and excellent medical services. 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1436
Joined: Jun 2015

Hey Dorothy,

I don't have answers to your questions but wanted to let you know that I was diagnosed in May 2015 with UPSC (the aggressive kind) and didn't have surgery until July 22, 2015. I'm telling you this so that you know even the aggressive kind takes time to spread. Mine came back as stage 1A. The waiting part really is the hardest part of this journey in my opinion.

One thing that helped me get through the initial part of this was using Lorazepam. Not my normal way to handle the stress but there is nothing normal about this entire process. You may want to consider asking your doctor for some. It helped me a lot.

It sure sounds like you have a lot going on between your stuff and your husband's. So sorry for that. I hope you have a solid support system around you that can help with aftercare for both of you.

Please take care and come back with your results and additional questions. We are here for you.

Love and Hugs,

Cindi

MAbound
Posts: 689
Joined: Jun 2016

Hi NateandKatesMom. I'm so sorry to hear that you are having so much anxiety, in part because of how long it is taking to get some definitive answers for you. Becca really hit the nail on the head on how it feels when we all start having concerns that something insidious is brewing inside us. That conveyor belt metaphor is so apt!

How to deal with the anxiety? Reading may be a bit premature at this point because there is so much out there that will only add to your anxiety when you don't have enough details to narrow what you research. During my wait between suspicion and surgery, I channeled my anxiety into spring cleaning and doing crossword puzzles. The one helped me to relax and feel like I had control over something preparing for being laid up for awhile and the other engaged my mind enough to distract me from thinking constantly about what I was facing. I think our brains need those kinds of escapes to be able to cope the rest of the time. Asking for anti-anxiety meds is another possibility and there is no shame in doing that, either.

Remember, this is a no apology zone, so go ahead and post what seems like rambling concerns to you. We all get it. I lost 8 pounds in a week before my surgery just from all the anxiety, so I think any of us can appreciate how intense what your feeling right now is. 

Atypical glandular cells just means that there were a few odd looking cells found on a pap smear,  but that they don't exhibit the characteristics of adenocarinoma. Adeno means relating to glands and carcinoma means cancer. It's really not something you need to be anxious about. I had a finding like that from a colposcopy I had in my early 20's and nothing ever really came of it.

If you have endometrial cancer, odds are it wouldn't be detected from a pap smear in any case. There is no reliable screening test for this cancer other than biopsy and those are only routinely recommended for women diagnosed with Lynch Syndrome (a genetic mutation diagnosed from gene testing) who haven't had a hysterectomy. Most don't get genetic testing until after that happens to them because of a cancer diagnosis. I was tested for Lynch Syndrome during chemo and was positive for it. Colon cancer is the other thing it puts me at higher risk for, so now I get to have annual colonoscopies. 

High estrogen levels are a risk factor for endometrial cancer. It can be an inherited trait or influenced by outside factors such as diet, weight (fat produces it's own estrogen), low excercise levels, certain drugs, or exposure to endocrine disruptors (there are so many in our lives that isolating oneself from them is almost impossible). 

Things you can do for yourself to help lower your estrogen levels are: reduce weight if necessary; establish a daily excercise regime; eat organic to the extant that you can to limit exposure to pesticides and other endocrine disruptors that may have been fed to factory-farmed animals; do not cook in, eat from, or store food in plastic; avoid products containing paraben (scents and candles for instance); avoid processed foods (especially metal cans with BPA).

Foods that can help with estrogen levels are: 1). Foods that contain polyphenols which counteract estrogen effects and inhibit estrogen production. Examples are flaxseeds, chia, sesame seeds, and whole grains. Just don't go overboard on them because they also have phytoestrogens which can mimic estrogen. 2.) Sulfur rich foods that promote liver health since the liver is the organ that eliminates estrogen in bile. Examples are onions, green leafy vegetables, garlic, egg yolks, and citrus. 3). Cruciferous vegetables that contain phytochemicals which impede estrogen production. Examples are broccoli, cauliflower, Brussles sprouts, bok choy, kale, collard greens, turnips, and rutabega. 4). Any fiber rich foods that aid the liver to eliminate estrogen faster.

Hope this helps you and gives you somewhere productive to focus your attention on as you go through what seems to be a painfully slow path to definitive answers for what causing your symptoms. Hang in there!

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

i am so sorry that you have to go through this.  Waiting is absolutely the worst part of ant health issue.  And we all have the bad habit of putting the horse before the cart.  Our mind jumps to the worst possible outcome and it sticks there.  I use jigsaw puzzles and adult coloring books to relieve stress.  My own diagnosis  was just the opposite of waiting.  It was more like a whirlwind. I went to my GP for a visit because I thought I had a yeast infection, and I did but he found a small tumor on my cervix.  Two days later I was back for a pap and some type of test where they vacuum cells from my uterus. Three days later, post ve results and an appointment with gynocologist two days later. He wanted a CT scan and then a D&C.  They couldn't decide if it was cervical or untiring cancer. All within two weeks, my head was in a major spin, no time to think.   the Gyro wanted to do a radical  hysterictomy immediatel, I asked for a consult with a Gyno-oncologist. He argued but followed through.  That was the best decision I ever made.  Before seeing me, he told me he wouldnt do the hysterictomy until I was healed from the D&C.  Finally a little time to think.  I am writing to tell you that even it it turns out to be the worst, life does not end.  It will be different.  I have stage IV Serous Papillary Endometrial Andocarcinoma and I have been around for 4 1/2 year.  I have more good days than bad.  There are new treatments coming all the time.  There is always hope.

Hugs and prayers, Lou Ann

Lindaspinner
Posts: 1
Joined: Feb 2017

lou Ann I was just diagnosed with stage three serous papillary uterine carcinoma awaiting surgery. It spread to 4 lymph nodes as what they see from Pet Scan and why they want me to do radiation and chemo which petrifies me and wanted to know what kind of treatment you did and how you got through it my surgery is Feb 21st 

thanks Linda 

 

 

 

Nellasing
Posts: 529
Joined: Oct 2016

I just wanted to say hi and let you know you've come to a great place.  I'm sure Lou Ann will be along as she is excellent at checking in.  While I do not have your type of cancer I do know how scary it is waiting for surgery ... waiting for everything!  I'm fairly sure the advice will pour in to not get ahead of things because no one knows anything really until they get the pathology report after surgery.  The best thing you can do for yourself is to try and stay calm and not worry.  Occupy your mind with other things and perhaps gathering your support team around you.  You are a statistic of ONE- You are stronger than you can even imagine you are right now and good news, you just inherited a LOT of peachy sisters who are ready, willing and able to walk along this journey with you.  Prayers and (((HUGS))) and invitation to come back as often as you want/need to- nothing is off limits so ask your questions, vent or whatever you feel will help you <3

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Welcome to the club no one wants to belong to.  This is a wonderful place to come for informotion, support, and comfort.  my frontline treatment was what is called the sandwich.  Three rounds of chemo( Taxol And Carboplatin),28 internal radiation 2 brachytherapy ( internal radiation and then three more rounds of chemo.  My cancer Metastizised seven months after I finished frontline and I have been on treatment since then and that was 3 years ago.  Since then I have had several other kinds of chemo, more Taxol/Carbo, Doxil,  Topotecan , and Avastin.  I am now on an immunotherapy drug called Keytruda.  I have gotten through it by a lot of praying.  I also have a lot of support from family and friends.  My husband has been a rock.  i have many more good days than bad.  I have much to live for so I fight.  I do have things that keep mind calmer.  I draw, color,  and do jigsaw puzzles, also I Pad games are all relaxing for me.  It is not easy but you can do it.  You,will find that you are much stronger than you ever imagined that you were.  As hard as it is, try to take one day at a time.  Even though a pet scan gives a lot of info, you,will get a more definitive plan when the pathology reports from your surgery comes back.  Chemo is scary, but it is doable and not as bad as I imagined.  Chemo nurses are the best and they will treat you like a queen.  Pelvic radiation was the easiest part for me.  Both do have unpleasant side effects, but your doctors will have meds that can help with them.  I was scared at first as we all are and there are days when I still am scared.  Sometimes we all just have to,out on our big girl pants and go on.

Sending you hugs and prayers, Lou Ann

nateandkatesmom
Posts: 40
Joined: Jan 2017

I do understand that I do not have adeuate information to get real answers. I just really, really needed someone to talk to and to connect with. The very few IRL people who know keep asking me, and I keep telling them. but they do not understand. They see the D&C as the solution for the problem, rather than just another diagnostic procedure for more biopsies.

I do have a prescription for Valium, 5mg from my PCP that I use on an as needed basis for things like the dentist and unexpected panic attacks. This is just such a different , heavy feeling.

We do not have an extended support group/family support. I emancipated from foster care and my husband at 62 is the youngest of 5. So basically it is us and our two college age children here.

Activity is difficult as it causes really heavy flow and clots. Also, my pain has worsened as the days have gone by. I am definitely going to be clear with the doctor about these things, although I do know I have mentioned them. I guess I need to paint a stronger picture of how debilitating this has become.

Mabound I love your comprehensive response. I will need to return to it, as well as to this thread, as the days progress. The healthy lifestyle recommendations are excellent, but unfortunately many are out of our financial means. However we do try to make the best choices whenever possible. The atypical glandular cells explanation was so reassuring. Thankfully I had a routine colonoscopy in Sept. which was perfect. Because of pneumonia complications, I had a chest x-ray, chest CT and then a follow up chest x-ray earlier in the year. The last x-ray showed clear lungs. (at one point there was a pneumonia dx and also an "undetermined mass" in the other lung.)

LouAnn I have recently joined a faith journaling group on FB, where you create a page to represent the weekly Scripture. It is challenging, but it has been something purposeful. I also have a few adult coloring books and do at times use them. I am a reader, but my attention span makes it difficult to focus.

All of you have affirmed me in a way that I needed so much. I worked at a children's hospital as a child life specialist and so am familiar with pediatric cancers. I definitely do not see a possible diagnosis as "death," but rather as a medical condition I will need to manage. I agree with everyone saying to make these days productive. I am feeling defeated by the waiting. I don't want my days then my weeks then my months consumed with waiting for the next test result.

Soup52 and Cindi, thank you for your caring responses. I have read some of the older threads and have copied and pasted some posts into a word document. Not to fret over, but because there were such clear explanations that I wanted to have them on hand if need be. Cindi, your first response to my original post was perfect. It was a stop sign for me to turn around and do something else until I had more complete information. I definitely get the need to avoid overload of info. when I don't even know a diagnosis. I returned last night because I felt that although I still do not have a diagnosis I at least can formulate some scenarios for which to ask questions. Thank you all for honoring those questions by your caring and informed responses. I will definitely post Mon. afternoon when I know what exactly the "abnormal" cervical biopsy results are, and what the dr. thinks about the pain and bleeding.

CheeseQueen57's picture
CheeseQueen57
Posts: 746
Joined: Feb 2016

This group is a Godsend. Be sure to let us know how your day goes. We'll be with you in spirit. 

nateandkatesmom
Posts: 40
Joined: Jan 2017

I will definitely update Monday afternoon.

nateandkatesmom
Posts: 40
Joined: Jan 2017

So, I waited almost 2 hours for the doctor, the second half in the exam room. It was soooo hot. DH and I were sweating.

He answered my questions, but I didn't get the copy of the biopsy report and don't remember what terms he used. My anxiety got the better of me and I just had so many questions.

Atypical glandular cells, as MABound stated, can be benign. Which I didn't totally understand what he said after that, but it doesn't matter because that was my biggest concern. (I'm going to stop by the office tomorrow to get a copy of the biopsy report.)

Overall, he thinks the D&C may stop the bleeding and I may not need a hysterectomy. He will remove the polyps and get better endometrial biopsies at that time as well as scrape the lining. He thinks this will stop the bleeding. He thinks the biopsies may show that I do not need a hysterectomy.

The ovarian cyst may have burst, causing all that pain last week. The cyst may be causing the high level of estrogen. So, after the D&C he will do another untrasound to check on the cyst and prominent follicles on the other ovary.

If the endometrial biopsies show cancer and a hysterectomy is needed the oncological gynecologist is not just there to do the staging but to actually complete the surgery with my gynecologist. I do have the option of being referred to Cleveland or Pittsburgh for the surgery to be performed there but that is not really feasible d/t our car, gas, parking and other expenses. It is not usually any longer of a wait if the oncologist is needed for the surgery locally than it would be if I only had my gyn.

I got a call from the facility w/ my pre-op instructions while writing this. I go at 6 am next Tuesday.

You all helped me so much this weekend. Thank you for listening and answering and caring. I know you are on this board for reasons that are personally challenging and it is generous of you to reach back to a novice while you are in your own struggle.

Dorothy

SLS100's picture
SLS100
Posts: 37
Joined: Jun 2016

well, it all sounds like more stress than one person should have to deal with. I have breast cancer not endometrial or uterine but my mother had uterine. i want to urge you to go to the chat room on this site, especially in the evenings. i am in claifornia and usually go on about 8pm my time. i dont know where you are but try somewhere about then from your state. there are a lot of caring and empathetic people in the chat room who have helped me get through many a night where all i wanted to do was just talk. and they listened and offered help. so please do the chat room as well as the discussion boards. you wont be sorry, i promise.

Nellasing
Posts: 529
Joined: Oct 2016

I didn't have good answers for you but have been following along and am so glad that you got some good information today!  Sounds like also a plan for moving forward and anticipating a REALLY GOOD outcome to all of this!  Please do keep us posted as we do care and we'll be cheering the loudest when you come out the other side.  (((HUGS))) and prayers <3 

nateandkatesmom
Posts: 40
Joined: Jan 2017

I am going to edit my post tomorrow when I get the pathology report. I cannot believe I didn't write down the name but in the past he has always handed me the papers after he reviews them. I think because I talked so much today he forgot.

I did try the chat room but it was soo confusing. I haven't done chat rooms, only private messaging on FB and it was so different. People knew each other's real names and referred to each other by those names so I had no idea who was talking to whom. Several were very welcoming and asked if I had questions. So I was able to "talk" to "real people" in real time, but it was overwhelming. I am definitely not high tech enough and also have no idea what all the chat abbreviations are. So, while I appreciated the opportunity it was awkward. Also, since there are both men and women there it was uncomfortable to be as open as I feel I can be here. I know that is not politically correct to say but it is just my comfort level. And now I am going to contradict myself with my next statement. People seem very open to discuss breast cancer and all it entails but no one seems to say uterine cancer or cervical cancer. My MIL refers to it as "female problems." When my husband gave her a vague, quick explanation of what was going on she wanted to put me on the prayer list for "female problems." I declined. Prayers are great, but that euphemism made me cringe.

So it is almost 3 am and hopefully I can fall asleep.

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derMaus
Posts: 494
Joined: Nov 2016

Like many people here, my diagnosis evolved over a period of time and the wait was excruciating. Everyone told me to take one step at a time. Looking back, I realize I had no other choice. But when I in the middle of it, only information could really soothe my fears and I certainly wasn't getting it from my doctor.  I was on the verge of imploding when a survivor friend recommended the American Cancer Society's 24-hour hotline. It's free and you can call them any time at 1-800-227-2345. Cancer information specialists staff the line; some are fantastic, some are meh, but all are highly trained and professional. If I didn't jell with someone, I just listened, thanked them, then called back the next day. Truly those folks kept me from losing my mind.

I, too, had atypical glanduar cells, which can sound ominous. Unfortunately in my case they were, but they were also a huge blessing: I was in perimenopause (despite being 59 years old) and still having semi-regular periods. I had an extremely thick endometrium obscured by large fibroids, and lived with constant discharge and spotting because I - and my doctor - believed the symptoms were of approaching menopause. I say this not to scare you, but to offer another perspective: that atypical glandular cell probably saved my life. I had a TAH right after Thanksgiving and am midway through chemo, which I'm tolerating well. If not for that pap smear, I'd be waiting around for menopause while things got really out of control. I, also, encourage you to have a gynecological oncologist do your surgery. Any surgery when there's cancer - or even the possibility of cancer - incurs a risk of scattering loose cells that then take root. Fortunately my oncologist was an excellent surgeon; she had to be to get clear margins and remove 36 lymph nodes so cleanly with absolutely no after effects. With luck, you've had time to reveiw your path report and are feeling much better about your situation so none of this information will be needed, but  I wanted to share my experience with you because so many had been kind enough to share theirs, and it always helped my perspective. Best wishes and please keep us informed!

nateandkatesmom
Posts: 40
Joined: Jan 2017

I tried the ACS 1-800 # before I found this board. They were very interested in my home address and phone #, which I did not provide. I quickly became very frustrated because I was expecting to speak with a "highly trained" person, and I do not feel that was the case in my experience.

My husband still does not know that I found this board, or that I am posting here. He is very much a one step at a time, deal with the current information type of man. Which is an excellent balance for me.

I absolutely was on implosion mode when I updated my first post with the plea for help. Thankfully, so many gracious ladies responded. It helped in a way that is hard to explain, but that I know all of you understand.

My endometrial canal is 17.8mm, and there was no clear line in the middle. There are three polyps. The in office endometrial biopsy showed nothing but he stressed that he needs to see inside to make sure he is sampling the abnormal areas. Having read a few abstacts re: atypical glandular cells I too am very concerned. Knowing that there is a possiblity that they are benign reassures me but the pain and the size of my abdomen, paired with the period from hell gives me pause. Follow up for the D&C will incl. ongoing monitoring of the ovarian cyst, which will be another sonogram.

There is no feasible way for me to go to a larger medical facility. My husband is awaiting surgery for cervical stenosis; the neurosurgeon office has not yet called back. He drives me to appt. We have an older car and a tight budget. I spoke with my gyn. about the role of the gyn, oncologist and it will be the gyn. oncologist, assisted by my gyn. doing the surgery. He said it is typically a two person job. As far as clear margins and removal of lymph nodes it will be the gyn. oncologist handling that, from what I understand. If we move forward to the hysterectomy I will definitely confirm these things.

I absolutely appreciate and respect all of you stressing the importance of the gyn. oncologist. The notion was first introduced to me by my gyn. when he explained that the 5 year survival rate is higher for women cared for by a gyn. oncologist. Also, from the two professional journal articles I read re: atypical glandular cells he is following the recommended protocol as far as diagnostic tests and the order of things. At this point, I feel comfortable. If the next set of biopsies require further treatment I will definitely seek feedback here and express any and all ?'s and concerns w/ my gyn.

As far as my cervical biopsy report, it just seems to be something to monitor. There is nothing there to indicate the need for anything further. But, I was so overheated and had been seating on that table far too long. Plus there was a student, so 4 of us in a tiny exam room. For next time my plan is to take a Valium before the meeting, whether I am anxious at home or not. Then I am going to request to be put in the room w/ the rocking chair (which I think is the baby room) as it has the rocker, another chair, and is both larger and cooler. Finally, I am going to ask to be allowed to return to the waiting room once the nurse assesses me and before the doctor is ready to talk with me. Since it is usually a considerable time, I will be much less anxious if I don't feel "trapped" in the exam room.

I will update on Tuesday.

 

Nellasing
Posts: 529
Joined: Oct 2016

You are doing absolutely wonderfully about making sure you have the info you need and also doing the self care that is critical to you being comfortable- what a great thing you have done to make those plans ahead of time - that will serve you well for the rest of your life.  Why does it take SO LONG for us to be kind to ourselves?  Gold star for YOU and thank you for sharing- one of our "peachy" sisters may need this info.  I'm going to practice being as kind to myself as I am to others too <3 <3  (((HUGS)))

nateandkatesmom
Posts: 40
Joined: Jan 2017

If I would have asked to either be moved to the other room or to wait in the waiting room after the nurse assessment and before the dr. was ready for me I would have remained much calmer. Sitting on that table spikes my anxiety and spikes my pelvic pain. I usually end up sitting cross  legged. While he was talking I was balanced on one hip, one leg under me and the other hugged to my chest by both arms while my hands shredded the wet paper towel that had been around my neck. :) Quite a picture I must have made!

I also forgot to use my roll on aromatherapy. (it is called, "Stress Relief" and has eucolyptus.) I also forgot a cold drink and some ice packs for the pain in my back and pelvic area. I just didn't think it would take so long. The thing is, since he delivers babies, you never know ahead of time if he is running behind schedule.

I am now going to approach my appointments as I used to approach my childrens' appointments. If there was a window, I turned off the overhead lights. I brought books and toys  and non messy snacks and juice boxes. I brought a favorite blanket or stuffed animal. When they were older I still took gatorade, a book, and drawing stuff or music.

As you say, we need to do self care, both for our benefit and for the benefit of the medical staff. This way we are much calmer, rational, and the appt. will go quicker. (From my lips to God's ears.)

Thanks especially for the gold star and hugs.

Dorothy

CheeseQueen57's picture
CheeseQueen57
Posts: 746
Joined: Feb 2016

I too recommend to have the gyn/oncologist do the surgery, not just stand by. My regular gyn wanted to do the surgery with gyn/oncologist standing by. So glad I had experienced gyn/oncologist do surgery because surgery ended up being much more complicated than anticipated. Good luck. 

nateandkatesmom
Posts: 40
Joined: Jan 2017

The gyn. oncologist will be doing the surgery, assisted by my gyn. The gyn. oncologist will no be standing by just to do the staging.

Soup52's picture
Soup52
Posts: 861
Joined: Jan 2016

DerMaus, I just commented on another thread about having large fibroids when still having periods. I also thought heavier bleeding was part of menaupause... I wish I had pursued something then such as a hysterectomY more education needs to get out there about our cancer!

nateandkatesmom
Posts: 40
Joined: Jan 2017

I will update after my D&C on Tuesday.

derMaus's picture
derMaus
Posts: 494
Joined: Nov 2016

Yes!! I'm so glad you're spreading the word on this! Years ago I had a myomectomy rather than a hysterectomy, because I thought - and still think - doctors are too hysterectomy-happy. Afterwards, nobody ever mentioned monitoring or anything else, until I wound up here. It's like an all-or-nothing proposition. 

nateandkatesmom
Posts: 40
Joined: Jan 2017

Over the weekend I thought I might be developing a UTI. Well, I was right. Starting antibiotics today. Called gyn to let them know and also to ask about AZO for the burning. Well, thankfully I can still have the D&C tomorrow but the nurse said he doesn't want me to take the AZO. :(  And no Ibuprophen since last Thursday d/t the upcoming procedure.

One final note to self. Do not watch a You Tube video showing the procedure. I don't think my legs will go like that. :) I can read ANYTHING and not have issues, but being a visual person I should not have watched that video.

Thank you all for being there to talk to. I have been coming back here everyday and reading the new posts, even when I don't comment.  

Dorothy

 

CheeseQueen57's picture
CheeseQueen57
Posts: 746
Joined: Feb 2016

Hopefully the antibiotics are helping. Good luck tomorrow. 

nateandkatesmom
Posts: 40
Joined: Jan 2017

I only started the med. this evening; my daughter had the car to go to a college classe. I am surrounded by ice packs, which is helping.

Dorothy

CheeseQueen57's picture
CheeseQueen57
Posts: 746
Joined: Feb 2016

Sitz baths helped me with burning of UTI

nateandkatesmom
Posts: 40
Joined: Jan 2017

CheeseQueen

Thank you. Saturday night I spent a few hours in the tub, emptying and refilling as the water cooled. I also lit some candles and the aroma helped distract me. Dorothy

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Just wanted to say good luck tomorrow.  Hope the procedure goes smoothly.

Nellasing
Posts: 529
Joined: Oct 2016

wishing everything goes well tomorrow!!!  (((HUGS)))

nateandkatesmom
Posts: 40
Joined: Jan 2017

I am just hopeful the procedure will allow him to get the 3 polyps as well as get really good endometrial samples. It should also stop the bleeding; which would be a nice bonus.

It's just the dreaded wait for the biopsy results, again. But of course all of you know that wait much better than I do.

Thank you again for responding to me in the midst of your much bigger stressors.

Dorothy

Soup52's picture
Soup52
Posts: 861
Joined: Jan 2016

Best of luck!

nateandkatesmom
Posts: 40
Joined: Jan 2017

I want to thank all of you so much for caring enough to respond to me.

I think everything went as planned. The doctor said I was on my period so that complicated things a bit. I reminded him that I have been on my period since October. Cool

I have ice packs.

My mouth is so dry, and I feel so nauseous. Hopefully sleep will help.

Thanks again!

Dorothy

Nellasing
Posts: 529
Joined: Oct 2016

So glad it went well- I'm glad you pointed out once again that this has been going on since Oct!  Sheesh what does it take?!

Sorry you are feeling a bit under after but drink as much as you can to clear the drugs and do get some sleep- it always helps me to sleep - kinda reboots things.

Keep us posted- we'll be praying  (((HUGS)))

nateandkatesmom
Posts: 40
Joined: Jan 2017

Nellasing: yes, I have been sipping on gingerale. I could barely eat one of the Lorna Doones they gave me. They were all so nice.

I am babbling.

hugs,

Dorothy

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1436
Joined: Jun 2015

Glad you are done with this part! If you can drink water please do so. It will help rehydrate you better than anything else.

For the life of me.... I will never understand why we are offered dry stuff when we come out of surgery! My  mouth is always so dry that any of those things stick worse than the thickest peanut butter! Good grief. Jello, ice cream, yogurt - anything that has liquid please!!!!  It generally takes me a good half day to get my body back to a normal level of moisture.

Take care and I hope you heal quickly. Please let us know how you are doing.

Love and Hugs,

Cindi

nateandkatesmom
Posts: 40
Joined: Jan 2017

When I first woke up and asked for a drink she gave me ice chips. Then later gingerale. But when she offered "food" there were no soft options mentioned. I am totally forcing myself to drink. Both to help the UTI and to help the cramping. I ate very light yesterday. Today yogurt, toast and oatmeal. And lots of gingerale. To be totally honest, with this nausea I don't think I can do water. I will try, maybe adding a little taste of gatorade in to help.

Hugs,

Dorothy

 

***updated to add that a headache soon joined the nausea. I had one dose of Toradol, and things got worse even with heat and ice and an antinausea pill. So, I stopped the toradol and am now (12 hr. later) going back on the ibuprophen. DH got me a cup of wedding soup, and I ate about 1/2. So far so good. ***

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