Fallopian tube girl on your uterine page

alicia2020,

I'm glad that you decided to repost your original message on this board. As I had mentioned, even though your cancer was primarily located in your fallopian tube, the treatments may be very similar to what we members with uterine cancer have gone through. So I hope that we can offer some good advice and support as you proceed down this road that none of us wanted to take.

And fallopian tubes are part of the uterus.  I'm sorry you are having to deal with this, but you are perfectly welcome here.  You have kind of a hard story to read, with the second surgery required.  I asked my surgeon to not take anymore lymph nodes that indicated during surgery, and if by chance I had to go back I would.  They do pathology slides right during surgery.  But I guess your surgeon did not suspect you had cancer.  Although he did a peritoneal wash.   That was a good thing.  And endometrioid is a slower growing type.   Keep in touch. We are here for you.

I used to think of gyn's as specialists, but have since come to appreciate that they are more generalists compared to gyn oncologists. I kind of cringed when I saw that your gyn did your surgery instead of referring you to a gyn oncologist. He had to be thinking maybe cancer because postmenopausal bleeding is never normal and because he did that wash. It's a shame that you have to go through another surgery as a result, but you're on the right track now and that's what counts most. Your doctor is right when he says that this is a very treatable form of uterine cancer, but the surgery and treatments are a chore because they take months longer to get trhough than the surgery itself and have their own recovery periods. Prepare yourself mentally for this taking a while to get through. Glad CMB sent you here because you'll find a lot of information here and we are an active bunch.

Are they waiting until after your next surgery to start chemo? One thing you may want to ask about and research is about genetic and/or genomic testing. It might cost you out-of-pocket to have done, but it can be worth it for the information it can arm your doctor with while he's treating you. Insurance should cover it, but generally doesn't at this date. There is growing hope that they will down the road someday, but that doesn't help you now. 

What a lot to go through. While your staging classification and some other things will be different than ours, I believe standard chemo is taxol  and carboplatin,  just like us. I'm not sure,  but I think your surgical procedures for ataging may also differ some, because ovarian cancer has a bigher propensity to spread locally through the peritoneum and/or abdomen than endometrial cancer does - we have more of a tendency to skip right over to the lungs. I think things like appendectomy and omentectomy are more commonly done for ovarian. I'm sure you'll find out tomorrow.

I will say that I had a combined laparoscopic hysterectomy, bilateral oophorectomy, small lymph node dissection, various little biopsies, plus a cholecystectomy (gallbladder) at the same time, and I started chemo on postop day 22 and was fully ready (physically anyway!). I hadn't been operated on twice in close succession though. 

One of the worst things about chemo is the anxiety and dread leading up to it. Believe it or not, once you have one under your belt, a lot of that weight is lifted. It's still a long haul, and some will have a harder time than others, but generally it's pretty doable. Getting past the "unknown " really helps.

I posted this just as your post was changed to this thread.  For what it's worth: Welcome to the Discussion Board.  You will find much help and support on this website.  The women are well informed and willingly share their experiences and advice.  Once you have the staging done, it will help to know the type of cancer as you will find discussions on the different types of uterine cancer.  For example I have serous cancer which is rare but aggressive.  Others have an endometrial cancer that is common and curable.  You can find others who have the type you have.  What type of chemo will you have?  I had six cycles every three weeks of carboplatin and paclitaxel.  I was diagnosed in Sept 2019 and completed radiation and chemo in April of 2020.  Chemo can be rough but I found that drinking lots of water,  being preemptive with laxatives to avoid constipation and exercise were very important.  Icing of hands and feet during chemo is important to prevent neuropathy.  You can find lots of advice on the other uterine cancer posts.  Lastly, always get a second opinion if possible.  Academic centers are invaluable.  MD Anderson in Texas and Memorial Sloan Kettering in NYC are the best places in the world.  I know MSK will do a second opinion by looking at all your records if you cannot get there.  You would have to find out if the insurance would cover this.  I was able to go there in person and my insurance covered the visits.  They received all the records I had to that point in time.  I wanted to make sure that my pathology was read by them and to get a treatment plan.  I am happy with all that came about with that.  You are embarking on a difficult journey during a difficult time.  I wish you the very best.  I was in a state of shock for some time so if you have family/friends who are supportive, they can be a godsend.  The women on this discussion board are terrific.  Read the latest posts for current information.  Also do not read anything on the Internet!  It is often old and not about you and your specific cancer.  

alicia2020 said:

Thx so much!

Thank you, Maxster!

My cancer is endometriod adenocarcinoma, so far Stage 2, Grade 2....although my stage may change after lynphadenectomy scheduled for next week. My surgery is to be laparoscopic & is on operating schedule for 1 1/2 hrs, so knowing what they already know from previous tests and hysterectomy, he’s not expecting to find tumors or lots of removal work to be done. My original pathology went to MD Anderson for a second opinion, and I’m sure that will happen with the next report. I will be requesting it. We’re in a suburb north of Houston and these doctors work together regularly, I think.

I’m very worried about ending up with lymphadema. I tried to tell him I preferred he take fewer nodes than more, and he pretty much said they all had to come out (at least the pelvic ones). He will also take para-aortic, “not higher than liver,” he said. I DO need him to save my life, so my attitude has to be, ”Do whatcha gotta do to accomplish that!” Do you ladies have advice about you avoided it? Maybe things I can do before surgery and after that would really help? I started wearing compression socks last week.

Ladies, I can find very little information about how painful this staging surgery is by itself, and recovery time. (Doctor’s office just gives the standard information.)It’s not usual that it happens without being part of the hysterectomy. I had a pretty easy time with the hysterectomy, and generally have a high tolerance for pain, & am otherwise really healthy,but kind of wonder if I need to prepare myself for this to be worse? Geeeeze....I hope not. Have any of you had just the lymphadenectomy alone?

My husband and I are on a little mini-vacation trip to have some great distractions from our new reality and get good rest before surgery. It’s helping immensely!

prayers and good thoughts for all of you! xoxo

Alicia

 

Hi Alicia, I had 20 lymph nodes removed and at my first post-op appointment I asked about lymphedema and numbness at the inguinal fold but it was dismissed and I was told that it would resolve but may take up to a year. I then had radiation therapy and noticed slight swelling on both upper thighs, when I asked the radiologist about it and possible lymphedema he again dismissed it and said that lymphedema was a late symptom of radiation and lymphedectomy. Eventually after completing radiation, I saw my primary care doctor and she thought there was a strong possibility that it was lymphedema but to get a referral to a therapist it would have to be from my oncologist. Eventually I got them to refer me and sure enough I was at somewhere betwee stage 1 and 2 lymphedema. My therapist, who used to be at MSK, said had they listened to me I would have probably been at a stage 0-1. In their defense I am very thin so they did not acknowledge that there was swelling but seemingly, at least at my hospital, Gyno-oncologists are not on top of this like the breast cancer ones. That whole tale is basically just to say, be your own advocate. This site and the ladies on it have been much more informative than my doctor for a lot of things. Best wishes for a positive outcome.

Hello, alicia.  I see all the other wonderful women have already covered so many things there is no need for me to add more, other than to ask you please continue to keep us posted.

Alicia, all my pelvic lymph nodes were removed during my hysterectomy and I've been so fearful of lymphedema (I hate tight clothing, so it would be terrible news to me that I need to wear it all the time). It's been over 2 1/2 years now since surgery and so far so good. My oncologists have told me that one of the best preventive measures I can take are to keep weight off and stay very active. I took them to heart and hike or run (and sometimes both) almost every morning before work.

Good luck to you -- your positive outlook and clear understanding that life's short should help you a great deal during this next phase of your life.

Tamlen