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Recently Diagnosed with Uterine Cancer

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Hi.  My name is Staci and I am 59 years old.  I was just told this week that I have uterine cancer and am having a difficult time accepting the news.  This all started about two months ago when I felt something wasn't right so I went to my doctor who advised me to have an abdominal and pelvic sonogram.  The abdominal sonogram was normal but the pelvic sonogram showed I had a thickened endometrial lining that was a little over 17 cm, which is reason for concern, so I went to see a GYN that immediately advised having a biospy performed and I opted to have a D&C in a hospital where I would sleep thought the procedure, as I heard being awake for a uterine biopsy could be painful and I already have a problem with anxiety.  During the procedure, two polyps were removed and the hope was that everything would be fine and the polyps were the cause for the thickened lining, yet I just found out abnormal cells were found and I was told I had a sarcoma, which translates as cancer.  I think even the doctor was surprised at these findings since I had no post menopausal bleeding, and that is usually a very big indicator when uterine cancer is present.  Anyway, I am now being referrred to a GYN/Oncologist and am going to need to undergo a hysterectomy in hopes of cure.  I was told this was an early stage cancer, but in reality, there is no real way of knowing for sure until the surgery is performed and the cancer is staged.  I am in a total state of panic over all of this since I really never expected to hear this news.  On the initial pelvic sonogram report, it stated a few possibilities and I thought or expected that the worst I may hear is I had hyperplastia, putting me at risk for cancer, but never expected this to actually come back as cancer, even though my endometrial lining was abnormally thick.  I would appreciate any positive feedback from anyone reading my letter who can offer some encouraging words or has been though what I am going through now.  I just joined this forum today, hoping maybe I could meet new people that could relate to what I am feeling and maybe make me feel better about things since I am feeling pretty down right now.  Thanks in advance for everything!

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

We've all been through what you are going through now.  I'm your age. I was diagnosed with Stage 3c, Grade 3 uterine cancer in March 2016 and completed my frontline therapy in October 2016. Try to take one day at a time. Find you the best gyn/onc you can. You're right, they can't Stage you until after surgery. We'll be there for you through your journey. I'm sure other more eloquent sisters will be jumping in soon. You are not alone. 

MAbound
Posts: 1153
Joined: Jun 2016

CQ...you are such a helpful presense on this board! I totally disagree that you aren't eloquent. What you've shared here has helped more than you know!  

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Hi CheeseQueen57.  It is nice to meet you, even though it may not be under the best of circumstances.  It is nice to know I am not alone and there are others like yourself that understand what I am feeling and going through.  Are you now cancer free?  Was going through the therapy used to treat you very difficult?  While I was told it is believed my cancer was found at an early stage, I know there is no way of knowing as an absolute fact until the surgery is done and I am staged.  I am not only afraid of the surgery, but of any treatments like chemotherapy since just the thought of it makes me nauseous, but I am just going to have to take one step at a time and hope for the best.  Thank you for writing since I really do appreciate it and will be in touch.

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

Staci, welcome to our group! I'm so sorry you are going through this. We have all been there and will be here for you through every step. My cancer journey started the summer of 2015 at age 62. Like cheesequeen mine also was found to be 3C3. As of last July 2016 I have been clear. There is hope! My prayers are with you. Feel free to always vent and voice your concerns and questions.

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Hi Soup52.  Thank you for welcoming me to the group.  I am happy to hear that you have been clear and really hope and pray you stay that way.  I know many people survive this kind of cancer and there is a lot of hope, but it is all new to me, so of course my initial reaction was all doom.  It is nice to have a place I can vent to with people that understand how I am feeling.  Thank you for writing and it was nice to hear you are doing well since that is encouraging.

MAbound
Posts: 1153
Joined: Jun 2016

Hi StaciLynn! So glad that you found us, but sorry that you needed to. This forum was a such a big help to me when I was where you are last year. The information, understanding, and support here really helped to calm me down and get me through what I had facing me and hopefully we can do the same for you. It's overwhelming, but doable.

The first piece of advice, besides researching the gyn/oncologists available to you like Cheese Queen recommended, is to start getting copies of any records generated as you go along and to have someone to go with you to your appointments to be your 2nd set of ears and memory. There's going to be a lot coming at you when you aren't necessarily going to be in the best place emotionally to absorb and retain it all. Take them right into the exam room with you and let the dr's know that they're your advocate. They will most likely welcome such a person being there for you.

Secondly, take a moment and just breath. It's going to seem like you aren't getting answers or treatment fast enough and waiting for appointments and results won't be easy. It's the norm, though, so prepare yourself for that and use the time to just live your life in the meantime. 

Good luck to you and remember this is a safe place for you to come with anything you need.

 

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Hi MAbound.  I have been trying to do exactly what you suggested in living my life as best as I can as the waiting process begins.  First it was waiting to hear the results of my pelvic songoram, which I found out about pretty fast, but then it was waiting to have my D&C scheduled, since there were a few delays along the way until that way done. I was so sure everything was going to be okay after that, but then I got the call that everyone dreads hearing.  I followed through with going to my GYN, getting a copy of my records and spending some time going over the report with him, as he explained in detail what the patholigy report meant to me.  I am scheduled to meet with a GYN/Oncologist the beginning of September, so there will be more waiting until I see him, but I know this is a process and it is going to be a journey that will not happen overnight.  It is nice that I found this forum where I could get the chance to talk with others who have been though what I am first going through now.  I actually started looking for support groups almost immediately after getting my diagnosis and as fortunate that I was able to find this one and am happy I am already getting responses to my introduction that I posted.

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

welcome to the club no one wants to belong to.  You have found a great places to come to.  The ladies here are great with advice, information and support.  This is also a place to come when you need to vent.  Everyone here will listen.  Like others have said, take everything one step at a time.  Waiting is a big part of this game, waiting for tests, waiting for,results.  You will surprise yours of with how strong you are.  What every happens, there is always hope.

Hugs and prayers, Lou  Ann

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Hi Loy Ann.  Thanks for the welcome, even though you are right in saying this is the club nobody wants to belong to.  I realize I need to just take one step at a time and the first step was accepting my diagnosis since I was sort of in denial at first, even though I did fear I would get bad news, mostly becasue my pelvic songoram showed a very abnormal thickening and I knew that was not a good thing from all the reading I did even before getting my diagnosis.  Sometimes maybe I read too much but I do like to be informed and prepared.  I do think the waiting part is very hard, but it is all part of this and I just have to accept that I am not going to get instant answers.  How are you doing?  I hope you are doing well and hope you are now cancer free. 

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Sorry, I spelled your name wrong as I raad back my letter to you since I meant to type Lou Ann, but sometimes I type too fast and make mistakes when I type, although even using spell check, it won't always pick something up, especially if it is a name I am spelling wrong.

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Sorry, I did it again, in typing the word read.  it is kind of late now and maybe I am just tired, but I saw you had written in addition to several other people and I really wanted to respond to everyone and thank then for getting back to me and responding to what I wrote.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

I am so sorry to hear of your diagnosis. I recall being in your shoes. It is a very scary time but please know that you will have all the support that you need from us. 

What kind of hysterectomy will you be having? Mine was a "TAH-BSO" with 14 lymph nodes excised. It took me about 4 weeks to get back to feeling normal after the surgery.

The type, stage and grade of the cancer tumor will be very important to know. My final diagnosis was uterine carcinosarcoma, stage 1b, grade 3. There are many different types of uterine cancers.

The information about the tumor will determine your treatment plan. My front-line treatment was 6 rounds of chemo (Ifex/Mesna/Taxol) with 28 external radiation treatments "sandwiched" between the 3rd and 4th rounds of chemo. I finished treatment at the end of May 2016 and had my first clear scan showing no evidence of disease or "NED" in June 2016.

 

At this early stage, I recommend that you consider collecting copies of all your pathology and surgery reports for your files. They will come in very handy to refer back to and if you decide to get a 2nd opinion.

Also, consider taking a recorder with you to appointments or find out if your cell phone has an app to record them. There may be a lot of important information discussed and you don't want to miss anything. I listened to my recordings again a few months afterwards and realized that I had missed some very important things the gyn-onc had said at the time.

I hope this information helps you. Good luck to you. You can do this and we will be here to support you! Wishing you peace and strength, Kim

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Hi Kim.  Thank you for the advise you gave me.  It was very helpful as I realize because of my emotional state, I may miss things or not understand certain things that are said to me.  When I went to see my GYN on Friday and went over my report, I took my husband with me becasue I felt someone should be with me with a second set of ears to I understand and interpret everything correctly.  From what I was told, this was an early catch and it is believed my cancer was detected at an early stage. I never had bleeding, which is uusually present, even in early stage uterine cancer, but the reason why further tests were done was because my endometrial lining was way too thick.  My GYN feels I am a good candidate for a laproscopic hysterectomy, but ultimately the decision will be made or at least presented to me by the GYN/Oncologist I will be seeing on September 1st.  I know some people feel an abdominal surgery is the way to go, but of course if possible, I prefer to have laproscopic surgery if possible, as long as the doctor feels I would do well having the surgery this way based on my initial patholgy report as stated from the D&C that I had.  I know I won't know for sure about needing further treatment until a pathology report is done after my surgery, but the thought of chemothearpy really scares me more than most people can imagine.  Did you get sick from the chemotherapy treatments you had to undergo?  I absolutely hate throwing up and actualy have an intense fear of it, so the idea of possibly needing chemotherapy as part of my treatment really scares me, not to mention just fearing that my cancer could have spread, even though the doctor seems pretty confident that it hasn't but there is no way of knowing for sure at this point.  I know if any abnormal cells are found in even one lyphm node, that would mean having to go through chemotherapy and I really don't even like thinking about that right now. On the positive side, it is wonderful hearing your scans are totally clear and you are cancer free.  I know this type of cancer has a pretty good cure rate compared to other types of cancer and hope you continue to have clean scans and good health.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

No on the sickness from chemo. For me, the worst part was the constipation - which stopped as soon as I started listening to the oncology nurses about taking Miralax daily. The medical teams know how to control the side effects from chemo WAY better than they used to. It's not like you may have seen in the movies or on tv - at least not for me. Everyone is different, of course, but I have zero regrets about getting the chemo. I honestly believe that it (along with surgery and radiation) saved my life. 

Regarding the laproscopic surgery you are considering, please be sure that the doctors will NOT be using a power morcellator (which can spread the cancer cells). The FDA has a warning out about them but it would be wise to at least hear it directly from your gyn-onc that he/she will not be using it just for your own peace-of-mind.

Good luck to you and hopefully you will have only good news in the future!

Kim

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Thanks for the advise Kim. At this point I am not even sure what method will be used for my hysterectomy since I am first seeing the GYN/Oncologist the first week in September.  It is good to know you never got bad side effects from chemo.  When I picture getting chemo, I just think of a person throwing up all the time and being very sick, but I know tings are different now and there are medications that can help control some of negative side effects from the treatment.  I will let you know what happens once I know more.

 

Staci

Cass83's picture
Cass83
Posts: 151
Joined: Feb 2017

Welcome to our group. I don't think I could add anything that hasn't already been said. The ladies here helped me when I was in your shoes and I know you will find the support you need from us. Take one day at a time. That is the only way to go. :)

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Hi Cass83.  Thank you for welcoming me to the group.  It is nice that people are taking the time to respond to my post and seem to really care.  I know we are all in the same boat and it is nice being able to come to a forum where I could get the support that I need.  I agree I need to just try to take one day at a time and I am hoping and praying for the best outcome.

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

Hi Staci:

My name is Sandra and I am new to this support group too.  I had a similar situation as you, just started to spot one day and went through the same tests.  I am now at home recovering from my hysterectomy.  I just had it Wednesday.  I am just glad to have that part over with.  I am able to get around a little sore, motrin is really working for me.  I had the robotic procedure.  All I know so far is my sentinel nodes were clean.  The final pathology will be in 3 weeks.

When I first got the news, I was scared and anxious.  I had already started to reseach all about uterine cancer.  What I can suggest is when you see the surgeon oncologist, get all your questions answered, but most of all feel confident and secure that you can trust them with your life.  After I  met the surgeon I felt more at ease  and was ready for the surgery.  

The ladies on this support group have really given my strength reading their stories and sharing their experiences. 

Know that you will get support from the wonderful ladies on this support group.

Sandra

 

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Hi Sandra.  I bet your are relieved that your hysterectomy is over with and that your sentinel nodes were clean.  I hope your final patholigy report comes back clean as well and can imagine how anxious you are to hear the news.  In my particular case, I never had any spotting, which is an early warning sign of uterine cancer.  I was getting some aches and pains here and there, but didn't think much of it, but my doctor knew enough to have me undergo both an abdominal sonogram and pelvic sonogram, which eventually led me to have a D&C, which revealed I had uterine cancer.  Is the robotic procedure done abdominally with the use of special machines to assist in the operation? I know there are different ways of doing hysterectomies and I am still not sure which way mine will be done.  I have had gall bladder surgery and two c-sections, so I know the pain in recovery from any type of abdominal surgery, but a hysterectomy is a whole new ball game, yet I guess it all depends on how it is done and what the patient's pain tolerance is.  Anyway, good luck with everything and please let me know what your final patholigy report is. I will pray that it all comes back clean and you don't need any further treatment, but it is nice to meet you and appreciate you writing.

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

Hi StaciLynn:

Thank you for your reply.  I understand your concerns having to have a hysterectomy and what to expext. after.  I too had two C-sections and yes it is similar to recovery.  Diffrence is with the robotic, there are incisions around your abdomen (belly button) done with robotic arms, controlled from a panel the surgeon uses.  I am in my 10th day post surgery.  I was already up  the nite I had surgery. The next  day I was up on my own able to  walk in the room and was discharged that day.  You won't be released until you can be mobile and respond to oral pain meds.    I was fortunate enough not to use the oral narcotics, just switched in between tylenol and motrin.  I found motrin to be the best as it helped with the soreness and muscle discomfort.

I can describe the uncomfortness between menstrual bloating and pulled muscles.  My right side had a lot more sensitivity, I have 3 incisions on that side.  I am going to say go with what will give  your comfort level.  Mine never reached a 4/5 and then took pain meds as I described. I ate light ...yogurt, soups, crackers.  My son bought an e z gripper or grabber to help me reach things for as simple as trying to pick up a tissue from the floor.  Just don't over do it.

I also live alone having been widowed so I had to know I could be on my own.  My youngest son went back to college after I was home 2 days.  My oldest is married lives closer to me, he and his wife stayed over for 3 nites just to have them in the house.  Since then I am on my own with my son comes over to check on me.

I got a call two days ago, my pathology came back stage 1a SC no papillary.  They described the amount of cancer to me as the size of a dot that was taken out with my first procedure the hysteroscopy. With the hysterectomy and pathology from that, everything is zero, no spread, no tumors, nothing in the lining or muscles.  I consider myself extremely lucky.

I will see my surgeon/oncologist on the 12th of September.  I was told he may also want me to have chemo as a preventative.  If he suggests that I am going to do it.

As with all the ladies on this site, who share and support all of us,  I want to do the same and know we can go on this site and get the much needed support and information about current treatments.  Too much is out on the web that is dated!

I will keep you in my thoughts and prayers, as with all the women on this site.  I hope I answered some of your questions, and eased some of your thoughts as you get ready for your surgery.  Please feel free to write me anytime.

Sandra

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Sandra, because I have had two c-sections, I am guessing the pain involved with a hysterectomy may be simiilar to that in a way. I also had gall bladder surgery over 10 years ago and felt I was better able to handle it since I kind of expected the pain to also be similar.  I remember after my first c-section, I had no idea it would hurt so much the first time I attempted to get out of bed, but it got easier.  When I had my second c-section years later, I was better prepared for the pain and had an easier time getting up and about after that.  The same went for my gall bladder surgery, which reminded me a little bit of what I felt about my c-sections.  Is robotic surgery the same thing as having laproscopic surgery?  I am assuming it is not a full abominal cut type of surgery, but could be wrong.  I am asking because you were discharged from the hospital pretty fast and I thought with abdominal surgery, you had to stay for a few nights.  I also have two children, with one of them living at home in her own apartment downstairs with her fiance, and the other one just went back to college last week. In a way, I am glad my younger daughter is back at school to spare her what I am facing since I would rather her concentrate on college and not on what's going on with me right now.  You are very lucky your cancer was caught at such an early stage.  Do you know for sure whether your doctor is going to want you to go through chemotherapy?  It sounds like you had the earliest stage cancer possible and I know some doctors may not feel chemotherapy is necessary, yet it still may be suggested and the decision will be yours to make.  I guess you can make an informed decision based on what you are told in terms of the statistics and odds of recurrance if you chose not to have any futher treatment.  As for me, if I was told my cancer was caught at a very early stage and there was no invasion of any areas like you were told, I probably would opt not to have chemotherapy if the doctor felt the chance of recurrance was very unlikely.  If I had no choice in the matter, I would listen to what my doctor had to say if he felt it was necessary to save my life, but if he was pretty certain I would be okay not having chemotherapy I would not undergo it.  I recently bought the book Cancer Smancher that was written by Fran Dreschler who is a uterine cancer survivor.  After her surgery, her prognosis was good and while one doctor suggested internal radiation as a precaution, she was told her odds remaining in remission was something like 95 percent without further treatment and 98 percent with the radiation.  She made the decision not to have the radiation and was fortunate to have remained cancer free for years and is still healhty today.  I guess that was her indivdual choice based on the information her doctors supplied to her and the research she did on her own.   I am sure you will make the right decision that you feel comfortable with based on what your doctor goes over with you, but in the meantime, it sounds like your prognosis is excellent and I am happy you made it through your surgery and did so well, getting a great report and hope you continue to remain in good health.

hopeful56's picture
hopeful56
Posts: 73
Joined: Jul 2017

Hi StaciLynn:

Surgery is  similar but different.  In summary a quicker release and recovery time based on how you feel as you recover from surgery.

I don't know yet if my surgeon will want me have chemo due to it was caught so early.  I will see him 12th of Sept.

I will think of you as you go through your surgery.  You will do well and feel better in recovery process compared to the sections.  Just don't over due it.  Get up as soon as you body tells you, at first you will need help.  Use the pain meds as you need it.  Each day you will feel better and be in the recovery process. Eat light, small meals.  That worked for me.

Thank you for sharing information with me.

 I will keep you in my prayers.

I am looking forward to your posts when you are home and up to it in recovery.

Sandra

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Hi Sandra.  It would be nice if you are told no further treatment is necessary because your cancer was found so early.  I guess you will talk it over when you see your doctor in September, but I know if it were me and I was told the chance of recurrence was next to nothing, I would pribsbly not go through chemotherapy and opt for regular check ups, yet if I was given no choice in terms of a real good chance if staying cancer free, I would have to rethink my position.  I know a lot of women on these boards have gotten through it and did great, but I have such a fear of being sick and throwing up that it borders on a phobia.  Even when I had my D&C , the two things I spoke to my doctor about was to promise me I would not wake up from the procedure with a tube down my throat and that anti nausea medication would be placed in my IV so I would have less of a chance of waking up nauseous.

I will be meeting with the GYN/Oncologist on Friday and will probably have more information to share at that point.  I am starting to get very nervous now since while the process of testing has already begun, now we will be talking about surgery, what type of surgery and what I may expect to happen.  This is just so hard for me to deal with and all I keep doing is looking up facts and statistics about uterine cancer.  Maybe I am reading a little bit too much, but it is nice hearing from people like you and the other women on the boards since I feel I am not alone and hopefully I will get through this.  I appreciate you keeping me in your prayers and I will do the same for you and hope you get a great report when you see you doctor on September 12th.  I have a friend I met online through another forum many years ago that was also diagnosed with uterine cancer.  I remember she had a full hysterectomy but never needed any additional treatment, yet she has been cancer free for over 10 years now.  I have written to her and told her about my situation and she has also been very supportive and encouraging because she is a long term survivor and is doing very well today.  She was also very logical about her condition and just followed her doctor's instructions in what had to be done instead of going into a state of panic like myself.  I just keep trying to tell myself that most people survive this cancer and I will get through it as well.  Thanks for the support and encouragement you have give me.

 

Staci

 

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Hi Staci,

Welcome to our board. You have come to the right place for support and understanding.  I agree with the ladies above. Take this one day at a time. This is the hardest part of the journey. Lots of waiting and not knowing what comes next. It is a must to have an oncology gyn for your surgery so I'm glad you are going to see one.

Please come back and let us know what you find out. We will be here for you.

Love and Hugs,

Cindi

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Hi Cindi.  I knew it was important to have an oncologoy GYN for my surgery and even my GYN, who I really like was the one that suggested that I have an oncology GYN do the surgery even though he could have done it himself, yet he said I really would be better off seeing a specialist in the field since they have more experience working with patients with cancer.  The surgeon I will be seeing did his fellowship at Sloan Kettering Hospital, which specializes in cancer, so I feel pretty confident in his abilitiy, yet I will first be meeting with him on Septemeber 1st and go over my recoreds with him.  I will definitely let everyone know what happens after I meet with doctor since I wil have a lot more information at that point and will at least know what the next step is, which I kind of already know, since I know it is going to be surgery, but at least I will know which type of hysterectomy I will be having and want to see if the oncologist agrees with my GYN in what was said based on the pathology report I received after my D&C.  Thanks for writing and I hope you are doing well and are in good health now.

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Hi everyone.  I am so honoroed to have received the responses that I have gotten from all of you since I was realy feeling so alone very sorry for myself.  I am going to try to respond to each and everyone of you that wrote but first wanted to just write a general response.  I was actually out all day today at two different parties, which in itself was hard for me to do since at first I just wanted to stay home and sulk, but was advised to try to live as normal a life as possible and not dwell on my diagnosis, just taking one day at a time.  Easier said than done, but I am trying.  Never in a million years did I dream I would be diagnosed with cancer and it is difficult even saying the word, but that's my situation.  I made one mistake in my post by saying I was diagnosed with a sarcoma, since it was actually a carcinoma, which is still uterine cancer either way.  I met with my GYN on Friday and went over the report with him and had my husband there with me in case I missed something or something just didn't sink it the right way.  I have an appointment to meet with a GYN/Oncologist on September 1st, but from what I was told and what the report read, so far it appears I have an early stage cancer with the cells being well differentiated, which I was told is a good thing if I have to have cancer.  I do not know for sure what type of hysterectomy will be performed, but do know for sure I am going to need a hysterectomy and will discuss the options with the oncologist.  I appreciate all the support given from all of you and am not going to address each of you separately. Thanks for welcoming me into the group that nobody wants to be in, but I am grateful I have found it since I am the type of person that really does need support and encouraging words to help me get through this.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1802
Joined: Jun 2015

Staci,

My surgeon told me before my surgery that having the robotic surgery all depended upon whether my uterus could "fit through the door".

Lucky for me, it did. :-)

Since it looks like you are concerned about chemo and radiation (we all were by the way) I wanted to let you know there are two threads that I think will help you understand what you will be dealing with. While all of us have some differences in how our bodies react, there are common issues for all of us. Here are the two titles for your reading pleasure:  'Ladies Going Through Chemo' and 'Let's Talk About Radiation'.  If you have any trouble finding them, let me know and I'll send you the links.

Remember to breathe! You will find out you are way stronger than you might think. And, know that if you need chemo, there are loads of meds that you will be given to help with the side effects. While it isn't easy to get through, it is very doable.

Love and Hugs,

Cindi

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Hi Cindi.  I have not met with my surgeon yet, so I don't know for sure what type of surgery he will recommend, but of course I am hoping it will be something less invasive with a faster recovery period.  Thanks for telling me abut the two sites I could look up regarding chemo and radiation.  Of course I hope I won't have to deal with that, but I won't know for sure until after my surgery and I am staged.  I think I always had a fear of those thongs, but like you said, everyone must feel that way, so I am not alone.  I do know of people who have undergone treatment and tolerated it well, so it isn't like the old days where when someone was undergoing treatment for cancer, they spent hours in the bathroom being sick. 

 

I guess I have my good days and bad, meaning sometimes I think more positvely and other days I get ultra upset and say to myself, "why me?"  Yesterday I attended two parties, keeping distracted and felt somewhat better.  Today,I got up and had that sense of doom again, but had company over and for a while, just tried to forget about my diagnosis and felt better again.  I think the key to my getting through this is to stay busy and keep occupied, taking one day at a time, but not constantly dwelling on my diagnosis, especially since I haven't even met with the surgeon yet, so there isn't much I can do at this point but move on with my life and hope things work out for the best.

Staci xoxo

MAbound
Posts: 1153
Joined: Jun 2016

Stacilyn, I think we've all had the high anxiety regarding surgery and treatment that you're having now when we were where you are. It's normal, so I'm not going tell you to relax because that would be a riduculous expectation.

What I will tell you is that you should forget about any "war" stories you've heard from friends and family about what they are someone they knew went through with their cancer. The science has changed so much in just the last five years or so that oncologists have a lot to offer to make treatment a lot more manageable than it used to be. We are also all individuals and bring different strengths and issues with us to the table, so what happens to one or some of us doesn't necessarily happen to all of us. 

Front line treatment (surgery, chemo, radiation, etc.) is one's best shot at curing this cancer. It's a lot more difficult to treat or cure once a recurrance occurs because the microscopic cancer cells migrate and mutate, so what once would have been effective may not be down the road.

Be open to treatment rather than opting for a wait-and-watch approach if its recommended. It's not easy, but it is worth it. You really want to throw the kitchen sink at this cancer in the beginning when you have the best chance of getting rid of it permanently.

Hang in there!  Smile

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StaciLynn
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Mabound, what you said makes sense, but of course I am still really hoping surgery will cure my cancer and no further treatment will be needed. I know it all depends on what is found or not found, but I do want the best chance at being cured and of course do not want to ever deal with a reccurance since I know very well once that happens, it becomes more difficult to treat and cure.  I know of people who have had different types of cancer, where surgery was all that was needed and they were cured, but I also know people who needed additional treatment to be cured as well.  Each case is very different and individual, but I just want this cancer out of me and never want to hear that word again.  I have always been a big supporter of donating to the cause of helping others with cancer, and have made donations to various organizations through the years, but never thought I would now be the one that needs the help.  I would love to be able to say I am a survivor and even looked up the color or hope for uterine cancer, which is peach, hoping to be able to wear something like a bracelet for the cause once I get past all of this.  I would also love to be in a postion where I could offer words of encouragment to others in the same position as me, the same way you are doing for me since I feel having a support group is so importand and very helpful.  Thanks for the help you are giving me.

Staci

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StaciLynn
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I am sure what I am feeling is perfectly  normal in terms of maybe feelin more emotional sometimes than at other times about my diagnosis.  Tonight, I am especially feeling all kinds of emotions and I want to explain why. For starters, I still don't know completely what I am dealing with in terms of what type of surgery I will be having, what will be found and what will follow.  I guess you can say those are my fears.  In addition to that, I have a college age daughter that is returning to college in the morning and I am feeling pretty emotional about that.  I am not sure if it has to do with everything else I am dealing with and the fact that I will just miss her while she is away, but I know her plan is to come back to visit after my surgery and I just hope she comes back to hearing good news.  In additon, I have another daughter that is older that will be getting married next July and has booked a destination cruise wedding.  Of course it is all exciting, but I am concerned about what my state of health will be but I also don't want to stop living and put a hault on my life in anticipation of not knowing what is going to be.  I need to live my life and hope everythign turns out okay but between the waiting and not knowing what my prognosis is going to be, my younger daughter returning to college and now thinking about my older daughter's weddding, I am feeling a little overwhelmed and emotional about things.  Have most of you been able to basically live your life's and go on as normal even with everything that was going on with you during periods of time when you were waiting for test results or surgery, after the surgery or if you needed to receive treatment?  Last year was a tough year since my husband needed emergency open heart surgery, which we totally didn't expect even though we knew there was a problem and we just thought he would need an angioplasty procedure to clear his blockages.  It was rough for a while, but he improved and things got better as my daughter got engaged last Christmas, we had a big engagement this summer, even though it wasn't long before that time period when it was first suspected I may have a problem, but at that point we didn't know for sure.  Now, I am the one facing a serious surgery and hope it will all turn out good, and I will be healthy and able to enjoy the cruise and the wedding next summer.  I am taking a chance and gambling I will be okay and just hope I am right about this.  I have seen more hospitals than I care to have seen over the past few years and just when everything finally seems to have settled down, something like this happens.

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KatnHat
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Joined: Jan 2017

Hi Staci, I'm hoping the surgery will cure the cancer, but just in case they want to be sure, they may recommend chemo and radiation. I was diagnosed in Sept. of 2016 after 7 months of being misdiagnosed. It was UPSC Stage IIIC2, last stage before stage IV. I was so scared and shocked and kept reading the odds on the internet and getting more scared.

I had a radical hysterectomy because my tumor was the size of a 9-week old fetus! But I got through it with pain meds and great support from friends and family. I did weekly chemo for 18 weeks and it was actually a breeze... no nausea or other side effects except for heartburn that I got OTC and even prescription meds for, as well as a wedge pillow. I then had five weeks of radiation and I did get sick the last two weeks but that could have been due more to the norovirus I caught than the radiation. I then had 3 treatments of brachytherapy, which were uncomfortable, but not horrible, and didn't last long. I just had bloodwork done for my 3-month checkup and am anxiously awaiting the news. But I feel great! My hair is growing back and I'm very positive about my future.

I never in a million years thought I'd get cancer (does not run in my family), but I feel going through the treatments and facing my own mortality has made me a much stronger person. I'm more grateful and humbled by the support I've received, and I'm doing things I never seemed to have time for before. You will get through this, I promise you! And strangely, you won't look back and wish it never happened. Good luck to you! Kat

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StaciLynn
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Hi Kat. It was interesting reading your story and reading how you never really got sick from chemotherapy and even with the radiation it may have been from getting the norovirus and not the treatment.  As much as I fear a spread of my cancer, I think I fear the treatments involved, but I have read a lot of posts from people that say it wasn't that terrible.  I also never thought in a million years I would get cancer, even though I think I always feared it.  Nobody in my family ever had this type of cancer besides me so it came as quite a shock to me.  You mentioned you were misdiagnosed initialy and I am sure you were shocked when you got the news. In my case, I was never misdiagnosed but my doctor saw a potential problem with my pelvic sonogram, acted on it with a D&C and my cancer was diagnosed.  While my PAP test was normal, that doesn't always tell the story and my doctor was going by my sonogram which showed a thickened endometrial lining that was way out of range of being normal.  Even so, I was still hopeful it wasn't cancer and it was just the two polyps that were found, but that wasn't the case.  I guess you just never know what is going to be do you?  I know you must be so anxious for your bloodwork up to come back and I will pray that all is well.  Is that the way they always check to be sure the cancer is gone and has not come back? I never asked my doctor that question since I haven't gotten to that point yet, but I was wondering what they do since I know you must have to have regular checkups for several years, but wasn't sure how they check or what they check other than having PAP tests since other than still having a cervix, everything else is removed during a hysterectomy in most cases, unless the woman is still in their childbearing years and opts for keeping her ovaries if possible, yet that does not apply to me.

 

Thanks for writing and for our words of encouragement.  Good luck to you as well. 

Staci

MAbound
Posts: 1153
Joined: Jun 2016

It's helpful to understand all that is making you anxious right now. This diagnosis never comes at a convenient time for anyone if there even is such a thing. 

Like many of us, you sound like you've been the caretaker in the family; the glue that keeps everyone going. This is your time now for your loved ones to give some of that back to you so that you can be done with front line treatment in time for your daughter's destination wedding. Even if you need chemo and radiation, there should be enough time for you to get through it before that at this point.

You may be lucky enough with catching this cancer in early stages that you're post-surgery treatment won't be so long as some of us go through, but don't let that be a factor in any decisions you'll be making. You need to focus on doing what needs to be done to kill this beast for good so that you'll also be there for your other daughter's graduation, future grandbabies, and growing old with your husband. 

Looking at everything you have on your plate can be overwhelming and upsetting at a time like this, so maybe try living in the moment or just one day at a time instead and let the rest just take care of itself. There's a very helpful African proverb: How do you eat an elephant?  Answer: One bite at a time!!

 

 

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StaciLynn
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Hi MAbound.  I never heard of that African saying about eating an elephant one bite at a time, but it makes since.  I feel like I have just begun this journey with cancer since I just really found out about it a little over a week ago and now it has to sink in.  I hear even when it isn't caught at very early stages, it is a pretty curable cancer compared to other types of cancer that are more difficult to treat.  One thing I never shared with anyone on the boards is it had been a number of years since I had been to the GYN and at first I kind of blamed myself for this happening, but when I finally did go, I had a clean PAP test, and I know PAP tests don't usually pick up uterine cancer, so I can't beat myself up over this.  Like most people in my position, I just never imagined myself being a cancer patient. Yes, I always feared it, but nobody in my family ever had any of the GYN type of cancers, except breast cancer.  Thankfully my mammogram was also clear.  I just didn't think I was a high risk for having uterine cancer based on what I knew about it, except for being overweight, which I soon found out was definitely a risk factor becasue of the estogren factor.  I am really trying to take this one day at a time and not get myself crazy, but I am finding when I do tell anyone about my condition, I can't seem to use the word cancer for some reason and tell people my tests showed some abnormal cells that I am going to need surgery for.  I don't know what it is about using the word cancer since that is what I have and I will say it to my family when talking about myself, but just not to most other people.  I just need to keep takling to myself and realize that a lot of cancers, including this type is curable and it is not all doom and gloom.  Thanks for writing and I hope you are feeling good yourself.

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StaciLynn
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Hi.  I recently joined this forum and introduced myself, but here it is almost 5 in the morning and I am having a bad panic attack.  I was recently told I had uterine cancer and while I had no symptoms, I had a thick endometrial lining which led to a D&C and my cancer was discovered.  i am scheduled to see a GYN/Oncologist this Friday and knew I was going to need a hysterectomy, however the pathology report from my D&C indicated my cancer was found at an early stage.  I had no bleeding which was a positive sign that this was caught early, but that all changed tonight.  By the way, prior to my D&C I was getting a clear discharge that I didn't think much of at the time, but after the procedure the discharge went away.  Tonight I felt the discharge was back and when I checked the toilet paper as I always do, I saw the discharge was no longer clear but had a light brown tint to it and I realized that means I am now bleeding.  I am totally and completely freaking out because prior to this I felt it was a very good sign that I had no bleeding.  I have had burning prior to my D&C and afterwards it got a lot worse, but I assumed the procedure caused that and thought it would just go away, but that never happened.  Tonight is the first night I ever saw a color to my discharge except when I bled a few days after my D&C.  My anxiety level is through the roof now and I don't know if I should call my GYN on Monday or just wait until I see the GYN/oncologist on Friday.  I don't know if the bleeding is related to the cancer, which I am guessing it is, but it also burns, so it could be an infection.  I am totally beside myself and don't know what to do now but I know I can't sleep since I don't know if this is an infection or the cancer is worse than originally thought based on the D&C pathology report.  I have already been through menopause but feel like I do when I used to begin my periid years ago, but I know it can't be that.

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StrongerthanIthought
Posts: 55
Joined: Feb 2014

I remember feeling just the same way you do.  I'm betting alot of us here do.  Bleeding was my first symptom - actually spotting, quarter-size that I noticed on my underwear.  I didn't have the burning tho.   It is OK to call the doctor when you have a concern. Even if they say wait until your Fri appt, it will ease your mind that the Dr is up to date on your symptoms.   BTW, I had stage 3C,  Had to have the hysterectomy, chemo & radiation.  Nothing easy about it but it is doable - you can do it too if you need to.   Now I am almost 3 years NED (no evidence of disease),  Waiting is hard, Once the gyn/onc takes over & makes a plan, you will feel better, because you will know an expert in the field is in charge and helping you fight.  

Barb

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StaciLynn
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Hi Barb.  I just woke up a few minutes ago and the first thing I did was to go to the bathroom and check for bleeding.  i did not know what to ecoect but it wasn't as much discharge as last night, but still a drop and the color was not completely clear.  Not to be too graphic, but I stuck the toilet paper all the way up to see if there was any bright red blood since any brown tinted blood could just mean it was sitting around fir a while, but it was mostly clear with a slight tint.  I am still feeling nauseous with worry because prior to this I was so optimistic that my cancer was found super early, yet now I am not so sure..  I am trying to stay calm but seeing something like this sent me into a state of panic.  I have to ask you, were you staged sfter your surgery and initially after you had your biopsy or D&C, what did they tell you they thought your prognosis was? This is so incredibly hard to deal with since first I get my diagnosi, then I am assured it was caught so early that I should be fine and now this.  In fact I was grateful I never had any bleeding since that is often an early warning sign of cancer, yet it was believed that because I had no bleeding it was probably at a super early stage, but there goes that theory.  Maybe you are right in saying I should call my Gyn just to let him know what is going on.  He may tell me to be calm and just wait until I see the oncologist on Friday.  It is very reassuring to know you were treated for your cancer that wasn't even st the earliest stage, yet you are cancer free today and have been for a few years.  I need to hear positive stories like your with good outcomes to get me through this since I have an snxiety disorder to begin with and this is one of the hardest things I have ever had to deal with.  My family thinks I am handling all of this pretty well, but they have no idea how I am feeling inside and how truly worried and upset I am, not to mention uncomfortable from the extreme burning.  Anyway, thank you for writing.  I hope and pray you remain cancer free and live a long and healthy life.

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StrongerthanIthought
Posts: 55
Joined: Feb 2014

I was staged after the surgery.  My biopsy, no D&C, showed the cancer, but no staging until later.  My gyn/onc told me I'd need the surgery, of course, but I was hopeful that I would be cancer free after that. I had gone in at the first sign of a problem, the spotting, so I thought it was found early.  Very scary to learn it was stage3 and chemo & radiation would be needed.  I had no other symptoms and never had any pain. Almost impossible to believe. Took a while for it to even sink in.  But, I did every thing he told me to do, went to every appt, test, etc that was my part of this deal.  Sept 4th will be 3 years since my last treatment.  You can do this!  I never asked for my prognosis - stage3 scared me enough. I knew it wasn't good and didn't want to know more.  My gyn/onc didn't tell me either BUT my chemo/onc (who I also didn't ask) just blurted it out at one appt.  40%  another devistating blow.   When I told my gyn/onc what I had learned, he said to trust him. That this was his specialty and the chemo dr sees all kinds of cancer. He said it was closer to 60%  Better - but still not very reassuring - so I went w 50% chance of being here in 5 years. I'm at 3 years & aim to be here for a lot longer.  Don't get too far ahead of yourself.    Go to your appt on Fri, take one sstep at a time & come here for support. We all understand. If one of us can't answer a question someone ese wil come along who can.

Barb

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StaciLynn
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Hi Barb.  I went back to sleep after writing to you since i was trying to sleep my problems away.  I guess I figured if I was asleep I wouldn't have to face anything, but I woke up, immediately went to the bathroom to check and there was hardly anything new in terms of the brownish discharge, yet I know that means nothing since if it happened once, it will happen again.  I haven't even told my husband about this yet, but I am sure he will tell me to remain calm and take one thing at a time. By the way, I read the amount of bleeding or discharge really has nothing to do with the stage of cancer since you could spot a drop and still have a serious issue going on.  I have to ask you how hard was it going through the surgery and then the treatments that followed?  I bet everyone hopes after surgery that will be it and they will be cured, not needing further treatment, but it doesn't always work out that way.  I have been doing a ton of reading about uterine cancer and it says if caught early there is an excellent chance if cure, but of course the statistics go down if it is caught late, yet there are lots of women on the boards who were not at an early stage, had treatments and have been cancer free for years.  The waiting part is hard since I feel this has been going on for months with me.  I was originally supposed to have my D&C months ago but kept feeling like my had a UTI so I was on antibiotics for a while until things got better and then had the procedure done. maybe at the beginning I really did have a UTI, but it seemed to get better so I had the D&C since my cultures were clear, but right after that the bad burning began.again, the cancer was found and I assumed it was all related.  I have had so many ups and downs since after my D&C my GYN really felt my problems were from the two polyps that were removed and felt the tissue looked healthy and I would be fine, yet that wasn't the case.  Then I was told my cancer was an early catch, adding  I don't even have any bleeding and the abnormal cells found were well differentiated and there was no invasion or something or other listed in the report, yet now I am spotting a little bit?  This can't be good.  I am very happy to hear you are doing well despite you staging and feel you are probably right in not asking too many questions about what your odds are since plenty of people beat whatever odds are quoted.  I was told I had excellent odds that my polps were benign and that everything would be fine, yet look what the pathogen repidt showed.  I was told that I may be an excellent candidate for laparoscopic surgery, but that was weeks ago before the spitting began and now it may be a whole different story, depending on what the oncologist I will be seeing feels.  The other night I was up the entire night reading the book Cancer Smancher that was written by Fran  Dreschler from The Nanny.  It took her over two years to even get diagnosed properly, yet she is alive and well all these years later, so I found her book interesting.  Well, thanks again for writing.  I need to hear survival stories to help me feel better and cope with all of this.  I still can't believe it when I say to myself that I have cancer, but just hope I end up having a good outcome since I know there are absolutely no guarantees in life.

 

 

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StrongerthanIthought
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You may notice that I don't post often.  That is mostly because I had such a routine, text book case that I rarely have anything to add.  I had the laproscopic surgery.  Stayed over night in the hospital.  I wasn't overly afraid of the surgery. I had knee replacement just 4 months before this, so figured this surgery had to be easier. Plus, at that time, I was still thinking that surgery would be all the treatment needed & I was eager to get cancer removed.  The thought of chemo was very upsetting.  My mom had cancer in '99 & refused chemo because she had seen some friends suffer thru it.  Again, chemo for me seems to have been routine and just as Dr had expected it to go.  I had a port put in. I highly advise this, altho having it put in was very uncomfortable, it made the rest so much easier.  I was able to have my chemo just as scheduled. No delays in treatments because of blood counts or reactions as some of the ladies have had.  The actual delivery was not a problem. Nurse just hooks up the chemo bag & inserts into port. Painless for me (I did have numbing cream to rub on the area about 1 hour ahead of time) I admit I hate needles - have even fainted at blood tests. Altho I have now gotten past that. So I was always nervous about having the port accessed but it never hurt.  then the drip starts. Also not a problem,  I like to scrapbook for a hobby.  I would get some pages started at home (when I felt good enough) & bring them to chemo appt. I would sit and finish pages while chemo dripped in.  Sometimes read or nap.  My husband went to evey appointment with me. Very comforting to not be alone.  My doctor had told me that the chemo would be hard on the body. Hard at first, then start to feel a little better, then time for another treatment. Again,  he was right, very routine.   I had bone pain so bad that I would shake. Weak, out of breath, no appetite (yet gained weight- my luck), lost my hair. misssed many activities with my family, cried alot.  But made it thru with no delays in treatment and kept going.   The radiation is painless and only took a few minutes.  Just lie there, be still and try not to think about why you are there.  Here is where my treatment varied a little from the plan.  I was to have internal radiation also but the external radiation & internal radiation doctors consulted and decided that just adding 3 more external treatments (aimed in a different area) would be best for me.  The radiation made me very tired.  Wake up, sit on couch, go take a nap, lunch, take a nap, get up to couch, etc.  Mostly did nothing but rest.   Once I was so weak that I didn't think I could drive my self to the treatment & had my husband take me. (The radiation treatments were so fast & easy that he had quit going w me to them).  At first, again routine, I had appointments with my Gyn/onc every 3 months (also w chemo/onc every 3 months) seems like always at the doctor. I recently, at 2 year point, switched to 6 months for both of them.  Have to admit the thought of recurrance is always w me, So I would have stuck w 3 months if they would have given the OK.  So, you can see, nothing easy, scary stuff, BUT we have all done it. (some have different treatments but all of us have faced it and fought) YOU CAN TOO! 

 

 Barb

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StaciLynn
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Barb, I was amazed as I read what you wrote about your treatment and how well you handled it.  You said it was routine text book, but to me, nothing about going through treatment like that is text book, even though I understand what you were saying in feeling your case was not unsual for someone being treated for uterine cancer.  I just felt everyone is very individual in the way they are treated for their disease and didn't realize there was a standard way of treating uterine cancer.  I have not even had my surgery yet, but the thought of going through chemotherapy of radiation scares me to death, since I have an abnormal fear of getting sick and throwing up even when I get a stomach virus, let alone something like chemotherapy. I was reading a lot of information about chemotherapy and know there are medications to help with the side effects, but also read if a patient is very anxious and expects to be sick, many times they will be sick from the anxiety of the anticipation.  Years ago my dad was diagosed with prostate cancer, but it was at an early stage and because he had a heart condition he opted for radiation instead of surgery and recovered well from it.  He is no longer alive, but it wasn't from cancer, but from his heart condition and a heart attack he had years later.  He never had any bad side effects from the radiation and even contnued to work full time while he was undergoing radiation, but he never had chemotherapy.  I am also very into scrapbooking but just can't imagine doing that while undergoing chemotherapy, yet I guess if you felt well enough to do that, why not?  I realize not everyone gets sick from the treatment, but for now, I just need to concentrate on getting a date set for surgery and will have to see what happens.  Of course I am hopig and praying I won't need any treatment after my surgery, but realize I won't know that until the pathology report comes back.  Even if I am totally cured of my cancer, I know I would also fear a recurrance, but I guess I can't live my life in fear and just have to learn to live my life to the fulest.  This is probably the scariest thing I have even been through or had to face and just hope I can remain brave.  I have a lot to look forward to, including my older daughter getting married next Juy and her marriage will be taking place on a cruise ship, so I better be okay since I hope to be there and just can't be sick.  I thought about that if any treatment is needed after my surgery, but I don't want to think too far ahead at this point since I first have to get through the surgery and will just have to take one day at a time.  Thank you for taking the time to write to me and tell me about your own journey.  I hope you continue to remain healthy and happy.

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Soup52
Posts: 906
Joined: Jan 2016

Staci, I too thought I had a urinary tract infection in the beginning and even went to a urologist in the beginning, so you are not alone in thinking that. I never asked about my prognosis of time to survive and was never told.Reading that stuff on the internet didn't help me so I quit that. Many of those predictions are older and some progress has been made in treatment. My diagnosis of clear cell endometrial cancer 3C was made August 2015 and my treatment treatment ended June 2016. I know it's very hard but there is hope. Prayers for you!

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Soup52
Posts: 906
Joined: Jan 2016

I forgot to add I am so far clear after 5 weeks of external radiation, three internal radiation, 6 rounds of chemo carbo/taxol and of course surgery.

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StaciLynn
Posts: 41
Joined: Aug 2017

Hi again.  Were your urinary issues related to your cancer?  I was originally debating between going to a urologist or a GYN but it was my primary doctor that had me go for an abdominal and pelvic sonogram and that's what got the ball rolling.  I was on and off antibiotics for a UTI until the cultures cane back negative, but these infection type feelings were coming and going.  I still don't know if it is related to my cancer but will discuss it on Friday with the GYN/oncologist I am seeing.  I could have two problems going on, meaning cancer and urinary but hopefully I will get answers soon.

I feel since I was diagnosed all I do is read about uterine cancer and sometimes the more I read, the more nervous I get.  I probably also think about the old days when any cancer patient spent hours in the bathroom throwing up and swore if I was ever diagnosed with cancer I would refuse treatment, but now that I am a person who has been diagnosed with cancer, I have to try to be logical about all of this.

i am new to these boards but I just read a sister member passed away and felt a real sense of sadness.  I did not know this woman at all, but read the comments that were written about her brave fight and just felt so upset and sad.  I feel bad for anyone who has cancer, but when you read about someone who lost their battle with the same type of cancer you were just diagnosed with, it really hits home.  Of course I don't know what her exact story or stage was, but I still felt bad and felt bad for the members of this group that knew this woman and suffered a real loss.  I guess I really thought most people survived uterine cancer in comparison to other types of cancer out there, but I realize there are truly no guarantees in life, especially when it comes to something like cancer.

On the positive side, i am glad to hear you made it through your surgery and treatment and you are doing well.  I have heard quite a few inspirational stories on this site showing me how strong the members of this forum are.  I am sorry I had to meet everyone this way since it is not a group anyone really wants to be a part of, but I am also grateful I found you and the other members I am getting to know better now.  I will pray for your continued  good health.

Staci

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Soup52
Posts: 906
Joined: Jan 2016

No, or should I say it was kind of a symptom after all, the urinary symptom. Having to go to the bathroom a lot and stupidly I didn't know where the blood was coming from because initially it was very very little blood, but I was leaking other fluid that was relatively clear. I had the appointment with the urologist and had a procedure scheduled that I quickly realized that it was a gynecologist who I needed to see. There was no need to see the urologist after being examined by the gynecologist. While I can't guarantee that you will have no nausea if you should have chemo you should know that the doctors provided plenty of medication to counteract that. I personally never threw up though hunger was definitely diminished during chemo. Take it one step at a time. Also, I have had 2 c sections and a kidney removal for donation and my robotic hysterectomy was the easiest for me to recover from. Prayers and keep us posted.

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StaciLynn
Posts: 41
Joined: Aug 2017

Hi Soup52.  It's funny since I think I was kind of in denial about certain symptoms as well.  For maybe close to a year, I noticed I was going to the bathroom a lot more and thought it was a UTI.  One time the culture actually came back as a UTI and I was relieved that's all it was.  Sometimes I felt just fine, but I always felt something was a little off in terms of my bathroom habits.  I would go for many hours without going, but other times I felt like I had to go every 5  minutes.  In addition to that I noticed over the past several months I was getting a decent amount of discharge that was mostly on the watery side.  It reminded me of what I used to get when I ovulated before starting menopause, but thinner since this was not ovulation.  I convinced myself that maybe it was just a yeast infection and nothing serious.  After my D&C the discharge completely stopped for a while, however a few days ago I felt it was back.  This time when I got the discharge it was still watery, but tinged with a slight amount of pink or brown colored blood.  I never experienced this before, but it had happened twice over the past few days.  The discharge is a lot less than before my D&C and not as consistent, but now has a color I know is consistent with uterine cancer.  Before all of this happened, I was really thinking of seeing a urologist but am glad I decided it was a GYN that I needed to see.  As far as chemo goes, I don't want to think about it since I haven't even had my surgery yet.  Of course I am hoping I won't need it, but admit I do fear it.  I thought having no bleeding prior to now was a really good sign, but now I am feeling upset because I thought I would be okay if I was at the point where there was no bleeding since that may have meant this was caught super early, yet now I just don't know anymore.  It seems like more people on this forum have had to go through chemo, raditation or both regardless of the stage their cancer was staged at.  Just as an added note, when I had my sonogram the report listed several possibilities why my uterine lining was so thick.  One of the possibilities was having a polyp.  When I had my D&C healthy looking polyps were removed and the surrounding tissue looked good , so when the pathology report came back as cancer, even my GYN seemed surprised.  I was shocked at the report and even though my pathology report looks encouraging, I know I sensed relief the first  time around, but not as much this time since I have been hearing there is no way to know for sure the true stage of cancer until after surgery is done.  Thanks for your continued prayers.  i will give you an update after I see the GYN/oncologist on Friday.

Double Whammy's picture
Double Whammy
Posts: 2835
Joined: Jun 2010

Because I also had breast cancer diagnosed at the same time, I had to wait until the breast cancer surgery and recovery before I could have my hysterectomy.  I was a complete basket case.  And, I'm very pleased to say that that was in 2010 and I'm in good health once again!  So about the bleeding. . . I also had no bleeding prior to the diagnosis.  I had gone in for a routine well woman exam and had a pap smear and there were endometrial cells noted and they're just not supposed to be there in old(er)  women! So the usual, ultrasound followed by biopsy which confirmed the cancer.  I don't remember which came first, but at some point I flunked my mammogram.  I was beside myself!!  So, anyway I had the breast surgery and was waiting for recovery and scheduled hysterectomy when I started bleeding just like it was a period.  This was around 6 weeks after my biopsy confirming cancer.  I called the gyn oncologist office and no one seemed concerned, but I was!!  It resolved and I had my surgery as scheduled (about 10 weeks after diagnosis).  Then, I had to wait until I was declared ready for chemo for the breast cancer!  Thank goodness, my endometrial cancer was early stage, low grade and I didn't need chemo for the endo cancer too.  And because everything turned out ok, I can say I was taken good care of and the bleeding was ok - for me.  

I suppose by now you have seen the gyn oncologist and I hope s/he has set your mind at ease a bit.  

Suzanne

StaciLynn's picture
StaciLynn
Posts: 41
Joined: Aug 2017

Hi Suzanne.  I am sorry you had to deal with two cancers at the same time, but thank God you are well now and survived both.  From what I know of both these types of cancers, they have a decent rate of cure compared to other cancers that I know of.  Either way, I am so sorry you and anyone else like myself have to deal with cancer.  I have been getting tons of calls  from some Women's Cancer Society that is looking for donations and each time my phone rings I get very angry wanting to shout out that I am a woman with cancer, so stop bothering me for donations.  I have donated to organizations in the past to support cancer research but I am getting really angry at this one for constantly calling me since I hate  any phone solicitations and am especially ultra sensitive every time I hear the words Women's cancers knowing my own situation now.  I am actually seeing the GYN/oncoligist this  Friday and as much as I hate going to the GYN I can't wait to go and start the process of getting well.  I am not looking forward to surgery, but I know this is the first step in what is needed and I just want it over with.  Of course the waiting process will begin again after my surgery as far as the pathology report goes, but I will try to remain optimistic.  Hearing about your bleeding after your biopsy helped me realize not to panic since while it is a symptom of uterine cancer, I already know I have that and even though the spotting started after my diagnosia, I should not interpret this as my being in a better or worse situation than I was in before.  Today the spotting is better, but I know I still have cancer and i still need to be treated.  Thank you for sharing your story with me and I truly hope you continue to be in good health and enjoy life, as I am hoping I will also be a survivor and maybe can also help others that have been newly diagnosed or are continuing their battle to become cancer free and healthy once again.

Staci

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

Boy, do I understand how you feel about those phone calls.. I feel the same way.  Resently I got one telling me I needed to donate to the poor women who were suffering from******* cancer and that this was very expensive for them.  I lost it and did give them a very large piece of of what is left of my chemo brain.

i had no bleeding or really nothing in the line o f symptoms before I was diagnosed.  I went to my GP with a yeast infection.  I did bleed heavily after my biopsy and D&C.

Hugs and prayers, Lou Ann

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