Recently Diagnosed with Uterine Cancer

24

Comments

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Staci,

    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

  • MAbound
    MAbound Member Posts: 1,168 Member
    edited August 2017 #23
    Stacilyn, I think we've all

    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

  • StaciLynn
    StaciLynn Member Posts: 41 Member
    edited August 2017 #24

    Staci,

    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

    Hi Cindi.  I have not met

    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

  • StaciLynn
    StaciLynn Member Posts: 41 Member
    MAbound said:

    Stacilyn, I think we've all

    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

    Mabound, what you said makes

    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

  • Kvdyson
    Kvdyson Member Posts: 789
    StaciLynn said:

    Hi Kim.  Thank you for the

    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.

    No on the sickness from chemo

    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
    StaciLynn Member Posts: 41 Member
    Kvdyson said:

    No on the sickness from chemo

    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

    Thanks for the advise Kim. At

    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

  • StaciLynn
    StaciLynn Member Posts: 41 Member
    Feeling kind of emotional tonight

    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.

  • KatnHat
    KatnHat Member Posts: 27 Member
    You will get through this!

    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

  • StaciLynn
    StaciLynn Member Posts: 41 Member
    Hi Kat. It was interesting

    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
    MAbound Member Posts: 1,168 Member
    Focus on yourself during this

    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!!

     

     

  • StaciLynn
    StaciLynn Member Posts: 41 Member
    edited August 2017 #32
    MAbound said:

    Focus on yourself during this

    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!!

     

     

    Hi MAbound.  I never heard of

    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.

  • hopeful56
    hopeful56 Member Posts: 73
    StaciLynn said:

    Hi Sandra.  I bet your are

    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.

    Hi StaciLynn:

    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
    StaciLynn Member Posts: 41 Member
    edited August 2017 #34
    Very Worried

    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.

  • StaciLynn said:

    Very Worried

    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.

    breathe

    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

  • StaciLynn
    StaciLynn Member Posts: 41 Member

    breathe

    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

    Hi Barb.  I just woke up a

    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.

  • StrongerthanIthought
    StrongerthanIthought Member Posts: 55
    edited August 2017 #37
    StaciLynn said:

    Hi Barb.  I just woke up a

    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.

    I was staged after the

    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

  • StaciLynn
    StaciLynn Member Posts: 41 Member
    edited August 2017 #38

    I was staged after the

    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

    Hi Barb.  I went back to

    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.

     

     

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    edited August 2017 #39
    Been there Done That

    Hi Staci

    You really don't have an idea of your stage until after your surgery. As far as I know the degree, amount, or type of discharge makes no difference on the stage of your cancer. Some women have no bleeding or discharge and some have bleeding (I did as my first sign). My surgeon tried laparoscopic surgery (which many say is a breeze) but got in there and found the cancer was so extensive that she had to do a total abdominal incis much like my c-section. I was diagnosed with Stage 3C, Grade 3. I cried. Remarkably, even with the abdominal surgery, I traveled to Italy 3 weeks later for an 8 day vacation before starting chemo. I underwent 14 weeks of chemo with carboplatin/taxol and I will admit it was no picnic but not as bad as I thought it would be. Yes, I lost my hair but I never vomited and survived. I was supposed to get 18 weeks but I had a minor stroke that left me with a little expressive aphasia but no other disabilities thank God. I then had 28 days of external radiation- again no picnic. Had a lot of nausea but again never vomited. Then 3 internal radiation treatments which is not as bad as it sounds. 

    Side effects:  I had an insufficiency fracture of my sacrum which has healed. I had some bladder issues that have pretty much resolved. I had swollen optic nerves that has pretty much resolved after a year with some minor permanent peripheral vision damage but that was due to a medication that the cardiologist gave me for a-fib because of the stroke. I have very minor neuropathy in my toes that really doesn't cause me any problem. The internal radiation has caused some pelvic issues which I'm dealing with through pelvic floor physical therapy. I had my surgery on St Patrick's Day 2016 And finished frontline therapy on November 1, 2016. 

    I'm walking 2 miles a day and just got back from an Alaskan cruise and plan on going to Spain for 2 weeks on September 15. I had my lasted CT scan on Thursday and see my docs on this Wednesday. I'll celebrate my 60th birthday on Saturday and no matter what the doctors say on Wednesday I'm going to Spain. Last year was the year from hell but I'm thankful to be alive and I'm determined to stay that way as long as I can. In my darkest moments, I did consult with a psychologist which I found very helpful. I remember my only relief being sleep and waking up every morning with the thought that I have cancer. Your life has changed with that thought but try to not let it ruin beautiful things you have in your life. Don't let cancer take that away from you. 

    I will be praying for you as I do every sister on this site. You are not alone. Please keep us posted. 

    Cheese

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    StaciLynn said:

    Very Worried

    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.

    Bleeding

    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
    StaciLynn Member Posts: 41 Member
    edited August 2017 #41

    Bleeding

    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

    Hi Suzanne.  I am sorry you

    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