Uterine Cancer Support Group
Uterine cancer is cancer of the uterus. It mainly occurs after menopause, and presents with vaginal bleeding. It is the most common gynecologic cancer in the United States, with over 35,000 women being diagnosed each year in the U.S. Meet with friendly, supportive people sharing their experiences with Uterine Cancer.
New here. I don't have a diagnosis yet but I'm not quite sure where else I fit in for support. I'll try to be short here with my story.
I'm 37. I've had heavier periods since sometime in the summer and then they got really bad a few months ago. Heavy heavy bleeding with clots....like can't leave the bathroom for hours and have to leave work bleeding...no real pain though until lately which is what makes things even more unpredictable. I can't fully explain how bad it is. Like I'll have nothing but maybe a little discharge and then a bad bleeding incident out of no where then back to nothing for two days then another bleeding incident...this might repeat itself one or more tines and then nothing for 2 to three weeks .
Started with a new doctor in January and started the usual tests to try to figure things out. I wasn't bleeding at the time but my blood counts were so low they had me go to the hospital for a transfusion. Probably not to big of a deal to most but to someone who had never been in the hospital or had an IV it was pretty scary.
Blood pressure, thyroid, sugar levels etc all came back fine. So the next step was a transvaginal ultrasound. I was told by my primary that the lining of my uterus was too thick and I'd need to have a procedure to remove it. Had to wait three weeks for a consultation. (which means I got to get sick again) . I had that appointment Wednesday. I found out that my uterus lining is 5mm thick? I'm not even sure how that compares in the grand scheme of things. I also found out I have something in my uterus that is about 5cm in size. They are not sure what it is (fibroid, polyp, blood clot) etc.
So I was giving a choice of having a biopsy in the office without sedation and then later doing whatever procedure needs to be done or being put under and having a hysteroscopy to remove whatever it is, followed by a D&C to remove the uterus lining. Whereas even regular exams are painful to me, I picked the second option...which the Dr also seemed to be leaning towards.
It's schedule for March 19th ....which again means I'll be sick again before hand...and makes me really worried my blood counts will be down again and I'll need a transfusion.
I wasn't to happy about all of this obviously but my doctor was acting really positive. She said The recovery was only a day or two and it would end my horrible periods and I would be fine. But after talking too other people I'm a wreck.
People who told me they had D&Cs said they were horrible and they were in pain for weeks afterwards and their next period sent them to the ER in an ambulance from losing so much blood. I was told that for having a lining so thick and something as big as 5cm was really big to have in my uterus was really serious and it sounded like it could be cancer.
So yeah ...I'm scared to death and convinced I probably have cancer. My mother died five years ago after fighting brain cancer for 8 years. I don't know how she did but because I don't think I could have the strength to do that. I wish she was here now though because I feel so alone. It's basically just my Dad here for me and he doesn't really get it...and a few friends that I have told but they are all so busy and don't really have time for my emotional breakdown. I'm just so scared about the procedure and the recovery and the biopsy. I can't sleep or stop crying.
I don't even really know what I'm looking for here... I know no one can tell me I'm going to be all right. Maybe just some of your own experiences or something.
I'm 37. I've had heavier periods since sometime in the summer and then they got really bad a few months ago. Heavy heavy bleeding with clots....like can't leave the bathroom for hours and have to leave work bleeding...no real pain though until lately which is what makes things even more unpredictable. I can't fully explain how bad it is. Like I'll have nothing but maybe a little discharge and then a bad bleeding incident out of no where then back to nothing for two days then another bleeding incident...this might repeat itself one or more tines and then nothing for 2 to three weeks .
Started with a new doctor in January and started the usual tests to try to figure things out. I wasn't bleeding at the time but my blood counts were so low they had me go to the hospital for a transfusion. Probably not to big of a deal to most but to someone who had never been in the hospital or had an IV it was pretty scary.
Blood pressure, thyroid, sugar levels etc all came back fine. So the next step was a transvaginal ultrasound. I was told by my primary that the lining of my uterus was too thick and I'd need to have a procedure to remove it. Had to wait three weeks for a consultation. (which means I got to get sick again) . I had that appointment Wednesday. I found out that my uterus lining is 5mm thick? I'm not even sure how that compares in the grand scheme of things. I also found out I have something in my uterus that is about 5cm in size. They are not sure what it is (fibroid, polyp, blood clot) etc.
So I was giving a choice of having a biopsy in the office without sedation and then later doing whatever procedure needs to be done or being put under and having a hysteroscopy to remove whatever it is, followed by a D&C to remove the uterus lining. Whereas even regular exams are painful to me, I picked the second option...which the Dr also seemed to be leaning towards.
It's schedule for March 19th ....which again means I'll be sick again before hand...and makes me really worried my blood counts will be down again and I'll need a transfusion.
I wasn't to happy about all of this obviously but my doctor was acting really positive. She said The recovery was only a day or two and it would end my horrible periods and I would be fine. But after talking too other people I'm a wreck.
People who told me they had D&Cs said they were horrible and they were in pain for weeks afterwards and their next period sent them to the ER in an ambulance from losing so much blood. I was told that for having a lining so thick and something as big as 5cm was really big to have in my uterus was really serious and it sounded like it could be cancer.
So yeah ...I'm scared to death and convinced I probably have cancer. My mother died five years ago after fighting brain cancer for 8 years. I don't know how she did but because I don't think I could have the strength to do that. I wish she was here now though because I feel so alone. It's basically just my Dad here for me and he doesn't really get it...and a few friends that I have told but they are all so busy and don't really have time for my emotional breakdown. I'm just so scared about the procedure and the recovery and the biopsy. I can't sleep or stop crying.
I don't even really know what I'm looking for here... I know no one can tell me I'm going to be all right. Maybe just some of your own experiences or something.
My name is Kami. I'm new here too. I can relate to your story. I'm almost 45 and I've struggled for years and years with the kinds of periods you're talking about. There were times that I didn't bleed as heavy, while I did have many instances where it would go for weeks at at a time. I actually had one instance where my hematocrit dropped to a 19. At the moment I"m at a 27.6 which is slightly up from the 26.9. I noticed I was gradually getting weaker sometime toward the end of summer. I was not yet covered by insurance so I waited to see a doctor. Then the pain started. I shifted gears a little and quickly made an appointment. My doctor listened patiently as I shared my history: having an ovary taken out at 28 due to large cysts, constant heavy bleeding and of course the issue with my low iron and hematocrit. She recommended that I do a biopsy. I was planning to wait on the biopsy, but opted on the fly to go ahead with it. It was uncomfortable, but not painful. She gave me pain meds for later and I needed them, but it wasn't terrible. 6 days later I got a call from my doctor. It seemed my results were back and she wanted to go over them with me in person. This sent up a lot of red flags for me since I already had a scheduled appointment that I set up the day of the biopsy. I made a comment about this not being good and she agreed with me. At that point she said again that she needed me to come in and bring to someone with me. I pushed for information and she gave it to me. I didn't think about it at the time but I was alone when I got the news that I have uterine cancer. In those moments I went through a whole myriad of emotions - 10 minutes later I was on a mission: find out everything you can and telling cancer to go to the devil. Since being diagnosed I have gone in for an iron infusion - something alien to me. I've had a CT scan, and am scheduled for a transvaginal ultrasound (I've already had to reschedule it because after getting the infusion my body played the dirty trick of bleeding even more than usual).
I share all of this with you so that you get the sense that I understand where you are coming from. Let's play devil's advocate for a moment. What if it is uterine cancer? That's treatable. I've been diagnosed with it and my prognosis is good. There is an 80% chance that with a hysterectomy that I will be cancer free and that I will not have to battle it in the future. Of course I will have to be vigilant about my yearly checkups but that's a small price to pay. Having the hysterectomy sounds like a blessing to me, like I said I've been doing this heavy bleeding thing for more than 2 decades. I'm tired of being tired, I'm tired of being in pain and I'm ready to be healthy. These are the things that you can look forward to as well. Chin up! There's always a silver lining even in the darkest cloud!
I'm just scared of anything medical....until I had a blood transfusion a month ago I've never even had so much as an IV! On top of that anything cancer related scares the crap out of me. My mother 's family all passed from cancer....different kind though...and not this kind. My grandmother passed in her mid fifties due to stomach cancer.. My mother always had every checkup/ test she could have ...but she got cancer the one place they don't check....her brain...when I was 24. She made it to sixty one but battled it for eight long painful years. less then half way through that she just wasn't herself anymore...couldn't talk or get around...So as much as I know there are different kinds of Cancer and different outcomes the mention of the word Still devastates me.
I'm so sorry to hear about you diagnosis. My name is Teresa and I'm currently undergoing Uterine Cancer treatment. I'm Grade 3 State 1. I also had a D&C but didnt really have a lot of pain with it. I did have a PET scan done and it showed no cancer after my Hysterectomy but the National Standard all docs go by said I still need the Chemo and Radiation. I was only able to do 5 of my needed 6 Chemo treatments because I ended up in the hospital with my port infected and too much time pasted to do the last treatment. My worst reaction to the chemo was on the first treatment and it was nausea and diarrhea. I was lucky that I only had to take treatment every 3 wks and was able to go back work. I was off 8 wks for the hysterectomy and the Chemo started during the last part of that. My last Chemo was 12-30-14 and that's the day I ended up in the hospital for fluid overload. Then was back in the hospital within a couple of wks for the port infection. That stay lasted 12 days. I was so happy to go home.. lol.. I finally made it back in the Oncologist and he told me it was time to start the Radiation. Now I had the worst side effect from the Chemo was the diarrhea and nausea, but there are several others I also dealt with they just didnt make me sick. Numbness in feet & hands, still having that one going on. Change in my vision, drives me crazy.. lol.. of course I lost my hair but not 100% and it started growing back before I finished the Chemo. I think my worst one is memory issues, Chemo Brain is REAL!! Right at 3 mnths out I feel like it's finally starting to go away. I go to the Radiation Doc on Tue for the Planning Appt. They take measurements and map out where the radiation will be aimed. This crap scares me. I know Radiation treatment can make you tired and I have to go 5 days a week for 5 weeks. And try to keep working during all of it. Bout ready to pull out what lil hair I have grown back.. lol
Just a little personal information about myself. I'm divorced 9 yrs now, still single and live with my cat and I turn 50 this summer. I have 3 brother's in the area and my sis is in S Cal. My mother is also in the area but she is also dealing with numerous medical issues of her own. I'm the kind of person that hates to ask for any help so I was taking myself to my Chemo treatments and did as much as I could for myself as long as possible. A few times I finally got to the point I'd have to get one of my brother's to take me to the store and type of thing. I've built some stamina back up so hoping when these treatments start I can make it all the way thru on my own.
I know exactly how you feel with the crying.. I have cried so much I would have thought that it isnt possible for me to have anymore tears in my body.. but they just keep coming.. I got a few meds from my doctors that have have helped with the tears and anxiety.. but it doesnt stop them all.. but any more I just dont worry about it.. I just tell people its me.. not you and just give me a few mins and I'll be fine.. I feel like I've typed a huge book here and I hope something in it will make you feel a little better. And the people at my Oncology office are wonderful, very caring and concerned and helpful, hopefully you can find an office like that.
Keep you head up and when a wimp like me can make it... you can too!!!!
It's hard to keep out the thoughts of dying. I live alone and my fear is spending time in hospitals alone. I'm trying to keep healthy enough that that doesn't happen. But who knows?