New Here...Surgery in 2days...UPSC...SCARED

Welcome to the club no one wants to belong to.  I am glad you found that s, but sad that you have to seek this kind of support.  This is a good place to come for support, and informatio.  Also for those times you just need to vent.  You will run into many emotions, and fear is one of them.  1st of all, don't believe all the stuff you read on the internet.  The statistics are old and treatment has advanced a lot even in the last five years.  You are a statistic of one, and one person's story is not yours.  I was diagnosed 5 years ago this month and have been in treatment for all but seven months.  I have stage IV Serous Papillary Endometrial Andocarcinom.  Even though I have been on treatmnet for what seems like a long time, I am still here.  I have many more good days than bad.  I have been able to welcome and cuddle four greatgrand children.  I worked for two years at a job I loved.  I taught school.  My husband and I have squeezed some travel between treatments.  Treatment is doable, it is not fun, but it is doable.  I am now on immunotherap, Keytruda, and it has given me a year that I didn't think I would have, and I am still going pretty strong.  There is always hope.  

Hugs and prayers, Lou Ann

I agree with LouAnn.  It's been 7-1/4 years since I was diagnosed with stage IVb UPSc, and in September, it will be 7 years since I completed my surgery and chemotherapy.  I had several years where I was in remission, but it snuck back on me and I went for another round with it this spring.  I seem to be winning the battle again, knock on wood.  My CA-125 is back down to 7.9, well within the normal range, and near the end of July, the tumor was a third of the size it had been.  I never had kids (not that I didn't try) and I find it unusual that someone who's had four is in about the same boat as I am.  Never being pregnant can be one of the risk factors for this cancer.  You're also very young to have it.  Most of us are at least in our late 50's, 60's, or 70's, and I feel badly for you to be experiencing this with your young children. You really have your hands full just with your children alone, let alone this.  I hope you have an excellent support system in the rest of your family and friends.  I've got to say that my first experience with chemo wasn't all that bad.  I never had nausea or vomiting (but I took Emend before each chemo).  I got short of breath about halfway through chemo, requiring a blood transfusion, and I had some numbness (peripheral neuropathy) in my feet, but that was about it.  This time, I've changed off the Carboplatin and Taxol combination to Carboplatin and Gemzar, which has been a little more difficult, but not as bad as you might think. It is a little more difficult going through chemo the second time, because the bone marrow can't handle as much the second time around.  Let's hope you don't have to worry about that. There are a number of success stories on this site, and I pray you will be another one.  Keep the faith.    

Harmony09, I am also very sorry that you have received this diagnosis. Although my diagnosis was not UPSC, it was another aggressive type of uterine cancer so chemo and radiation were my front-line treatments (after surgery). For me, and everyone is different, recuperating from surgery was the toughest part of treatment.

Neither the chemo nor the external radiation were nearly as tough as I had been imagining. I was able to work (desk job) during both and experienced only minimal side effects - thanks in large part to my wonderful medical team and the way in which side effects are managed now. I am sharing this because it's important that you make your decisions based on facts and not on fear. Fear can play havoc with your mind when you are newly diagnosed with cancer.

It's great that you've found us so you can understand what to expect from others who have been where you are now and have come out the other side. Please try to stay hopeful. Ask us anything. Nothing is off-limits.

Good luck in whatever you decide!

Kim

I was first diagnosed with post menopausal uterine cancer (aggressive serous cell carcinoma) in 2015. Had complete hysterectomy and full course of chemotherapy followed by some radiation (I made personal decision to stop early for many reasons). Was in remission but in March of this year was diagnosed with recurrence - found in vagina. Through a PET scan in preparation for radiation, found it has metastasized to plelvic lymph nodes and lungs. Have been on chemo (Doxil) since then - monthly treatments. Am "stable" which means while there is no improvement, there is no signs of worsening. Been having CT scans and x-rays at different times during treatment. Have a CT scan tomorrow and chemo on Thursday. Going to have seriousness a talk with doctor tomorrow as to whether there is better treatment or anything else to kick this, or can I just expect this current status to continue. I am blessed to not be feeling really bad, but don't want to just stay the same. Any input from others with a similar story?  Thanks!!

Harmony09 said:

Surgery and Recovery: INSANE!

My experience was just plain awful! I'm going to try to make this short, because I am still so emotional about it, I don't want to bore y'all by rambling. I should preface this by saying that I am on a medication called Suboxone. I've been on it for 3yrs. I'm in Recovery. I had a little more than 6yrs clean before my sister moved in. I had a horrific relapse that was short but hellacious. Prior to it, I had been unaware of the benifits associated with Suboxone, because I assumed it was just like methadone...that keeps people high and still in constant contact with using addicts. Anyway, if anyone wants to know more about my Recovery journey, just PM me. The point is: Suboxone has a huge affinity for the mu/opioid receptors; therefore, opiates cannot permeate the bond, unless given in higher doses AND only 2 medications can do it successfully. Suboxone also has a 36 hour half-life, which means that 36 hours after I take it, only 1/2 of it exits my system. AND, every 24 hours, I take a dose. My doctor/surgeon/EVERYONE knew that I am on this medication. However, I didn't find out until a day after the surgery that nobody knew ANYTHING about it. He performed a radical hysterectomy and removed 2 sets of lymph nodes and my omentum then basically put me in a bed with NO pain meds! I laid there for 12 hours, writhing in pain, passing out from it, and the 1st crew of "nurses" (if you can call them that) made no attempt to do anything but treat me with contempt, because the 2 pills they gave me, 4 hours apart, where like throwing M&M's at my pain. One of them got so upset with me not being able to answer some kind of questionare, she threw the lung exercising thingy at me and barked: "You need to be doing this 10 times an hour"! The only thing I could even say to her when she snapped about me "not wanting to do that today", was that I was just trying to breathe! It was all I could do to lay in the fetal position for those 12 hours, and pray for the next breath and some sort of miracle. The second set of nurses were more sympathetic and called him 3 times. He refused to do anything different. One of those nurses finally realized that I was in excruciating pain and somehow was able to get me just enough medication IV, that I was able to get to the phone and call the doctor who prescribes the Suboxone. He was livid...to say the least. The 1st crew of egotistical, close-minded, judgemental, masochists came back on, and flew into a frenzy trying to discharge me ASAP. They refused to call my prescribing doctor who was waiting by the phone to explain to them what they had done and what they needed to do. The ounce of relief was wearing off, and I hadn't even been able to sit up much less be able to get to the restroom, so they could remove the Foley catheter.  They went and got a lady from Administration, who "TOLD" me it was time to get up and walk out. Thank God, a young anesthesiologist came in right then to check on me. I was a shaking puddle of tears and I began to tell her about the situation, and she stopped me, grasped my hand, and said something nice...unfortunately I don't remember, but she ran out of my room and I had hope for the 1st time. I don't know what she said to those nurses and the"lady" in the cheap business suit, but the one who always mumbled stuff when she walked out came in and asked for my doctor's business card...the one she refused to take hours before. The dressed up, Supervisor of Twits slinked in and gave me some shpeal about how they were going to look into things and asked me to be patient...as if I had a choice! A completely new nurse came in about 20 minutes later and FINALLY gave me a dose of relief, while going through the new discharge plans for pain management, which is another horrific story. I was able to get up and walk to the restroom and put my clothes on. Two of the Twits busied themselves in my room...taking the IV catheter out, and cleaning up. I was handed a packet of papers and told that someone would be down with a wheelchair to get me to the car. The Most Annoyed Twit bestowed her last mumble upon me: "Let's just get her out of here". I wasn't told anything about my surgery, how to care for myself, what to expect, or even what to look out for. Thank God for this site, bbecause I have scoured the posts and learned more than the Twits could have told me anyway! Thank you ALL so very much for sharing and being here. I go see the surgeon tomorrow at 1PM. I feel completely lost about what to say or do at this point. My dad was waiting for me after surgery, and he told him something about it had spread even more and that he had to take more of something than planned. I don't know if I can trust this man if I need another surgery.  I don't know if I can trust him with my life....which includes the lives of my children and grandbaby girl! If anyone has any suggestions for the conversation or ANYTHING, please let me know. And, Thank you ALL again!

Harmony, I'm so sorry that you had such an awful experience. I don't have a lot to offer, but maybe just a couple ideas. Is it possible for you doctor that prescribed Suboxone to contact your oncologist hopefully with written information as well as speaking to him. Also, is there another gynechological oncologist in the area who you could switch to providing your insurance will allow. The way the hospital acted was so unprofessional that you may need to speak to a lawyer about this. Once again I'm so sorry and remember these are just a couple ideas. There may be others who have better suggestions.

Harmony09 said:

Surgery and Recovery: INSANE!

My experience was just plain awful! I'm going to try to make this short, because I am still so emotional about it, I don't want to bore y'all by rambling. I should preface this by saying that I am on a medication called Suboxone. I've been on it for 3yrs. I'm in Recovery. I had a little more than 6yrs clean before my sister moved in. I had a horrific relapse that was short but hellacious. Prior to it, I had been unaware of the benifits associated with Suboxone, because I assumed it was just like methadone...that keeps people high and still in constant contact with using addicts. Anyway, if anyone wants to know more about my Recovery journey, just PM me. The point is: Suboxone has a huge affinity for the mu/opioid receptors; therefore, opiates cannot permeate the bond, unless given in higher doses AND only 2 medications can do it successfully. Suboxone also has a 36 hour half-life, which means that 36 hours after I take it, only 1/2 of it exits my system. AND, every 24 hours, I take a dose. My doctor/surgeon/EVERYONE knew that I am on this medication. However, I didn't find out until a day after the surgery that nobody knew ANYTHING about it. He performed a radical hysterectomy and removed 2 sets of lymph nodes and my omentum then basically put me in a bed with NO pain meds! I laid there for 12 hours, writhing in pain, passing out from it, and the 1st crew of "nurses" (if you can call them that) made no attempt to do anything but treat me with contempt, because the 2 pills they gave me, 4 hours apart, where like throwing M&M's at my pain. One of them got so upset with me not being able to answer some kind of questionare, she threw the lung exercising thingy at me and barked: "You need to be doing this 10 times an hour"! The only thing I could even say to her when she snapped about me "not wanting to do that today", was that I was just trying to breathe! It was all I could do to lay in the fetal position for those 12 hours, and pray for the next breath and some sort of miracle. The second set of nurses were more sympathetic and called him 3 times. He refused to do anything different. One of those nurses finally realized that I was in excruciating pain and somehow was able to get me just enough medication IV, that I was able to get to the phone and call the doctor who prescribes the Suboxone. He was livid...to say the least. The 1st crew of egotistical, close-minded, judgemental, masochists came back on, and flew into a frenzy trying to discharge me ASAP. They refused to call my prescribing doctor who was waiting by the phone to explain to them what they had done and what they needed to do. The ounce of relief was wearing off, and I hadn't even been able to sit up much less be able to get to the restroom, so they could remove the Foley catheter.  They went and got a lady from Administration, who "TOLD" me it was time to get up and walk out. Thank God, a young anesthesiologist came in right then to check on me. I was a shaking puddle of tears and I began to tell her about the situation, and she stopped me, grasped my hand, and said something nice...unfortunately I don't remember, but she ran out of my room and I had hope for the 1st time. I don't know what she said to those nurses and the"lady" in the cheap business suit, but the one who always mumbled stuff when she walked out came in and asked for my doctor's business card...the one she refused to take hours before. The dressed up, Supervisor of Twits slinked in and gave me some shpeal about how they were going to look into things and asked me to be patient...as if I had a choice! A completely new nurse came in about 20 minutes later and FINALLY gave me a dose of relief, while going through the new discharge plans for pain management, which is another horrific story. I was able to get up and walk to the restroom and put my clothes on. Two of the Twits busied themselves in my room...taking the IV catheter out, and cleaning up. I was handed a packet of papers and told that someone would be down with a wheelchair to get me to the car. The Most Annoyed Twit bestowed her last mumble upon me: "Let's just get her out of here". I wasn't told anything about my surgery, how to care for myself, what to expect, or even what to look out for. Thank God for this site, bbecause I have scoured the posts and learned more than the Twits could have told me anyway! Thank you ALL so very much for sharing and being here. I go see the surgeon tomorrow at 1PM. I feel completely lost about what to say or do at this point. My dad was waiting for me after surgery, and he told him something about it had spread even more and that he had to take more of something than planned. I don't know if I can trust this man if I need another surgery.  I don't know if I can trust him with my life....which includes the lives of my children and grandbaby girl! If anyone has any suggestions for the conversation or ANYTHING, please let me know. And, Thank you ALL again!

OH Harmony, what a nightmare! So sorry you went through that. Congrats on being clean. You have been through a lot and I hope the hardest part of all of it is behind you. I hope you heal quickly from your surgery. And, I hope your frontline treatments will be tolerated well. If you are not comfortable with your team of doctors, I agree with Soup and MA - time to find someone else. That is so critical to your long term care.

Stay strong and please come back and let us know how you are doing.

Love and Hugs,

Cindi

karyk said:

Uterine cancer Metastasized

I was first diagnosed with post menopausal uterine cancer (aggressive serous cell carcinoma) in 2015. Had complete hysterectomy and full course of chemotherapy followed by some radiation (I made personal decision to stop early for many reasons). Was in remission but in March of this year was diagnosed with recurrence - found in vagina. Through a PET scan in preparation for radiation, found it has metastasized to plelvic lymph nodes and lungs. Have been on chemo (Doxil) since then - monthly treatments. Am "stable" which means while there is no improvement, there is no signs of worsening. Been having CT scans and x-rays at different times during treatment. Have a CT scan tomorrow and chemo on Thursday. Going to have seriousness a talk with doctor tomorrow as to whether there is better treatment or anything else to kick this, or can I just expect this current status to continue. I am blessed to not be feeling really bad, but don't want to just stay the same. Any input from others with a similar story?  Thanks!!

Many of the members of this board have had wonderful oncologists. I'm not one of them, which is why everyone here has been such a godsend in my struggle to understand this disease and navigate the best course of action. One problem, I think, is that you start with a oncological surgeon, whose skill set often ends with taking your stitches out, and your 'regular' oncologist who, at least in my case, looks up  your cancer on a chart and assigns you to a treatment regimen with no further analysis.

So here's my two cents' worth: if you haven't had genetic tumor testing (e.g. Foundation One), ask for it. If your tumors are large enough and in an accessible location, you may also consider a live tumor assay (e.g. Rational Therapeutics)  which is where live tumor tissue is exposed to different types of chemotherapy to see which ones work. Both, or either, will give you much better information about what you're actually working with; otherwise you're just doing a standard treatment regimen which may, or may not, be best for you. Some insurances will pay for both genetic and live tumor testing; some won't....but in retrospect I would have gladly paid for both, had I known. In my case, my genetic testing - done after a post-chemo recurrance - revealed that my cancer type is often platinum resistant. JUST what you want to hear after 6 rounds of carboplatin and taxol results in mets to your lymph nodes! 

I'm sure other members will have excellent suggestions. I just wanted to throw these two out there, as I have direct experience with both. Take care of yourself, and please keep us posted as to what you find out. 

MCruz said:

Hello

Hello lovely ladies! I'm new here. Just joined yesterday. I wish I had found you a few months ago but I'm glad I'm here now. I had a hysterectomy on May 3, 2017. It's been quite a journey thus far. I just finished radiation and now I'm moving on to brachytherapy. Im so glad to be here. I don't feel alone anymore. ❤️❤️❤️❤️❤️❤️

Welcome MCruz. Sorry that you had to join our group but we're glad that you found us. You may want to start a new post so that you get more responses (it can be tricky to follow posts within posts). We're here for you so don't be shy! Hoping that your treatments are successful and drama-free! Kim