Serous Uterine Cancer and Severe Small Fiber Neuropathy - New Member

Debi,

I am sorry to hear you are having so many problems.  I understand you love your gyn, I love mine too, she saved my life with a few little words, "Let's find out what's going on".  As soon as they found out it was cancer I was turned over to a gyn/onc and his team who specializes in these below the belt cancers.  Just under two years of diagnosis I finally got to see my gyn again and I hugged her and she hugged me. 

I would recommend you consider asking your gyn for the name of THE doctor that can help you sort this all out.  Someone who will stop, look at your records, reports, treatment, and help you now. 

I am sorry I don't have any experience with SFN, but some of the other women may be able to help there. 

Hugs

In response to Debi, I am so sorry about what you've been going through with the doctors you've seen. I hope that you are getting the correct treatment that you need by now.  I feel so blessed that I live in a big city and can get good medical care.

Here is my story: In Dec 2013, I started having light vaginal bleeding. I know two others who had that also and they didn't have cancer. I did not know that vaginal bleeding post-menopausal is a sign of endometrial cancer. My GYN had just retired and I needed a new doctor so I began my search. I found a good group and got an appointment for March 18. I had a vaginal ultrasound on April 3 which indicated a problem and had a biopsy that same day. I received the diagnosis of endometrial adenocarcinoma, endometroid type, figo grade 1 on April 8th. I was referred to an GYN/Oncology surgeon and got an appointment for April 11.  I had a total hyserectomy and removal of 23 lymph nodes on April 30. The tumor was small, did not penetrate the endometrial wall and the nodes were all clear. It wasn't until this second path report came back that it was diagnosed as USPC as my subject above indicates.  It is a Stage IA but a Grade 3/3. I was misdiagnosed!  If my doctor had known what he was dealing with, he would have done a "wash" during my surgery which is when saline is put in the abdominal cavity and then sucked out -  both good and bad cells. This would possibly have indicated that it had spread but it's not always definitive.  But it would have been helpful.  I was given three choices: go back in and do a wash, observe or have chemo. I chose chemo.

I had a port-a-cath inserted on June 9 and started chemo on June 18.  This serous cancer mimics ovarian cancer so it is very aggressive.  I have 4 cycles with 3 weeks in a cycle for a total of 12 infusions. I go once a week.  The first week of each cycle I receive Carboplatin and Pacilitaxel and the 2nd and 3rd week just the Paciltaxel. I've finished my first cycle and have had minimal side effects. The biggest one is fatigue but not to the point that I can't function. Anti-nausea medication is given also at each infusion so I'm thankful for that.  I hate to vomit! 

Emotionally, in the beginning, it was very hard. I felt like I was given a death sentence.  I started thinking about writing letters to my husband, children and grandchildren.  I had started an inventory a while ago so my family would know what was important to me and they could decide what to do with my "things". I stared adding to my list immediately! I'm a praying woman so that helps a lot. I have a very supportive husband, family and friends. I was diagnosed early so my doctor is very encouraging and a very compassionate man. I have moments of fear rise up but I'm doing OK.

I know this is lengthy and each case is unique but I think relating our experiences can be helpful to us all. This is an uncommon cancer so I look forward to hearing your stories.

trustingHim

trustingHim said:

New member with Uterine Serous Cancer

In response to Debi, I am so sorry about what you've been going through with the doctors you've seen. I hope that you are getting the correct treatment that you need by now.  I feel so blessed that I live in a big city and can get good medical care.

Here is my story: In Dec 2013, I started having light vaginal bleeding. I know two others who had that also and they didn't have cancer. I did not know that vaginal bleeding post-menopausal is a sign of endometrial cancer. My GYN had just retired and I needed a new doctor so I began my search. I found a good group and got an appointment for March 18. I had a vaginal ultrasound on April 3 which indicated a problem and had a biopsy that same day. I received the diagnosis of endometrial adenocarcinoma, endometroid type, figo grade 1 on April 8th. I was referred to an GYN/Oncology surgeon and got an appointment for April 11.  I had a total hyserectomy and removal of 23 lymph nodes on April 30. The tumor was small, did not penetrate the endometrial wall and the nodes were all clear. It wasn't until this second path report came back that it was diagnosed as USPC as my subject above indicates.  It is a Stage IA but a Grade 3/3. I was misdiagnosed!  If my doctor had known what he was dealing with, he would have done a "wash" during my surgery which is when saline is put in the abdominal cavity and then sucked out -  both good and bad cells. This would possibly have indicated that it had spread but it's not always definitive.  But it would have been helpful.  I was given three choices: go back in and do a wash, observe or have chemo. I chose chemo.

I had a port-a-cath inserted on June 9 and started chemo on June 18.  This serous cancer mimics ovarian cancer so it is very aggressive.  I have 4 cycles with 3 weeks in a cycle for a total of 12 infusions. I go once a week.  The first week of each cycle I receive Carboplatin and Pacilitaxel and the 2nd and 3rd week just the Paciltaxel. I've finished my first cycle and have had minimal side effects. The biggest one is fatigue but not to the point that I can't function. Anti-nausea medication is given also at each infusion so I'm thankful for that.  I hate to vomit! 

Emotionally, in the beginning, it was very hard. I felt like I was given a death sentence.  I started thinking about writing letters to my husband, children and grandchildren.  I had started an inventory a while ago so my family would know what was important to me and they could decide what to do with my "things". I stared adding to my list immediately! I'm a praying woman so that helps a lot. I have a very supportive husband, family and friends. I was diagnosed early so my doctor is very encouraging and a very compassionate man. I have moments of fear rise up but I'm doing OK.

I know this is lengthy and each case is unique but I think relating our experiences can be helpful to us all. This is an uncommon cancer so I look forward to hearing your stories.

trustingHim

 

Hi TrustingHim:

     I just read your post and wanted to respond to it.  I too, was diagnosed over 3 years ago in Feb. of 2011 with UPSC. My cancer was 5 centimeters and did not penetrate the uterine wall.  I had bleeding for about 6 months when I had my surgery and my gyn did some tests on me, but nothing came back conclusive so I pushed for the surgery.  So glad I did!  My GYN did my surgery and did not sample any lymph nodes nor did I have my omentum removed.  He then introduced me to an oncologist who he knew well right after I had my surgery 2 days later, and then I made an appt. to see the oncologist the end of Feb which is when I found out I had UPSC.  

     My oncologist recommened very aggressive treatment of 6 cycles of carboplatin and taxol and 3 rounds of brachytherapy which I went through.  I made out well going through chemo, although after my 5th treatment I had to get a Neulasta shot and a blood transfusion because my platelets were so low, but the shot and the transfusion helped me out a lot, and I felt so renewed and regenerated after I had that treatment.  The hardest part for me was losing all my hair after the first chemo treatment, but I figured it was temporary and would grow back which it has.  My hair used to be very thick and I had a long bob, now I have a shorter bob, and I don't have to get my hair cut as often as I did before which is good so I do save money on my hair appts. I used to go every other month for a haircut, now it is every 3 months, and I do get a bang cut every month as my side bangs grow in quickly.

   I never got staged from the UPSC, but my oncologist is thinking it is Stage 1.  I have had a number of CT scans, and so far all along, they have showed NO evidence of disease, and I just met my 3 year mark in February of this year, and the first 2 years are the most critical of UPSC reoccurring, and so far so good.  I do know a women that has Stage 3 of our cancer and she said her oncologist said to her that after 3 years, and UPSC does not reoccur within the first 3 years, then your chances of UPSC are very good about 80% of it not coming back so that was really good to hear.   I am still diligent and watchful though of what I eat and changed my eating habits for the better once I was diagnosed with this cancer.  

  UPSC is a very scary diagnosis and I have to admit also that I was really scared when my oncologist first mentioned to me that patients with All stages of UPSC have passed away, and I asked my radiologist if anyone in stage 1 ever died from it, and he said a woman he treated did not have chemo initially, her cancer came back on her, then she went through chemo after it reoccurred, and she passed away after about 3 years.  I know I did not want to take that chance there is about a 43% chance of it coming back if you do not have chemo and so I decided to go through chemo and it is very doable and especially after my oncologist recommended aggressive treatment.  I always felt I made the right decision to have the chemo and had no doubts of getting it done I figured it would greatly increase my chances of living and going on with my life.  Your very wise also to have the chemo treatments also and I wish you all the best going through your chemo treatments.   I know that chemo is usually recommended for all stages of UPSC since it is such a rare and aggressive cancer. 

  I feel very fortunate and blessed so far that UPSC has not come back on me.  I have done everything I can to eat healthier.  I did lose about 20 lbs or more when I went through chemo.  I could not eat for a few days after chemo though and after about 6 days my appetite returned.  I went through my brachytherapy treatments after my 6 rounds of chemo.  I started chemo in April of 2011 and was finished with the chemo the end of August of 2011, and finished with the brachytherapy treatments the middle of October of 2011 and I then went back to see the radiologist in November of 2011.  I had to see the oncologist 3 times in 2012, and since then it has been twice a year.  I have 2 more years still to get through this.  

    I also have a very supportive husband, family and great friends and they were all pulling for me going through the treatments.  My Mom who was in her late 80s at the time, and just turned 91 felt so bad for me that I had to go through chemo and she knows how much I had to go through.  My Mom was there for me for most of my treatments and my son who was in high school at the time, was also there for me during a couple of my chemo treatments.  My Mom was diagnosed with early breast cancer which she survived back in 1973 and did not have to go through any follow-up treatments and I am very grateful she is still living and here for me.

   The women on this uterine board are great so if you have any concerns, we are always here.  I wish you all the best in going through your journey.  I hope in 3 years you are still cancer free and without evidence of disease and can make it to the 5 year mark and that is what I am hoping for as well to continue to remain with NO evidence of disease. So far, I am more than half way there.  

   You probably could change your eating habits and that is what I feel has helped me.  I don't eat much meat anymore, I gave up a lot of the foods I had been eating before like hot dogs, pork roll sandwiches, steak sandwiches, hamburgers although I have them on an occasional basis, tonight I had turkey burgers which are much less fattening than regular burgers.  The American Cancer Society also has said to limit french fries and potato chips and potato chips I used to really enjoy them, but I have cut back tremendously on them and rarely have french fries.

Cheerful

a/k/a Jane

My mom was diagnosed with USC 2 years ago. It has come back twice in her chest wall, she was on ixabipalone last year and it worked well for her so they decided since it had been over a year since she had it they would try it again, both times with AVastin .Her CA 125 has gone from 212 to 157 to 137 so far. She has her monthly blood work again next week, hoping its good news. I wish they could fine something that would get rid of it once and for all !!! I am thinking about having her see a natural path to help keep her healthy , she is 78 years old and in really good shape other than this. Joined this site to hopefully hear of new treatments out there if there are any, she is going to Yale and is happy with them so far. I know they are doing some studies but nothing new yet.