To keep ovaries or not - new endo cancer, grade 1

bluesmama said:

I got dates

The doctor called back and the dates offered are a lot sooner than my first oncologist's. By Sept. 1 I will have given birth to my uterus and that's the only thing I'm ever giving birth to. I'm trying to keep my sense of humor about this. I've never wanted to bear children so I'm not particularly upset about the up-coming loss. A uterus birthday party maybe? I don't mean to offend anyone who has had to make the tough decision while wanting to have children. They asked me repeatedly whether I wanted to try non-surgical methods of treatment first in case I want to preserve my fertility or harvest eggs but I've been emphatic about surgery. I've had such a horrible relationship with this broken uterus the last 5 years that I'm looking forward to not buying pads in bulk, doubling up with tampons, the anemia, and worrying about clots falling out in public.

I still have to figure out the ovaries situation but the ball has started rolling. Now to figure out when to tell my parents. I haven't told them yet because they are going through some very serious health issues themselves and I worry the stress will send them over the edge. My siblings know and have been very supportive. Most of my friends have been supportive too. Cancer really does weed out who your friends really are when you need it the most and sometimes, the support doesn't come from those who are closest to you. The radio silence from some was very disappointing but I'm not going to get upset over that loss.

Bluesmama, I found out I had cancer 10 days after I buried my father, so telling your parents, my mom in this case, was one of the hardest things I ever did.  Like you, my sisters knew, and since none of us live in the same city as my mother, one of my sisters drove in for the weekend so I could tell her.  I wanted her to know before I had surgery and MOST IMPORTANTLY assure her I would be alright. 

I cannot for the life of me begin to know what my mother was thinking when I told her and the look on her face will be with me for the rest of my life.  I would recommend that you have your siblings around for support. 

Cancer weeds out true friends quickly, but that makes easy to know who you can call on when it gets tough. 

bluesmama said:

I'm so sorry you had to go through that.

My siblings think it would be best if my parents were home. At least one of my siblings wants to make sure they are physically there with my parents. I think this is best. Since my surgery is in less than 3 weeks, this is going to be a matter of good timing. I want to make sure they're both emotionally and physically in a better place first. The last couple of weeks has been rough on them.

Not to change the topic but I've been most worried about how frequently the initial biopsy grade changes from the final grade? I doubt staging can be accurately discerned from a tiny biopsy. I've seen posts where someone was initially graded as a 1 but then graded as a 2 or even 3. My ultrasounds indicate a small mass and a thickened and enlarged uterus but did the actual surgical staging find more than that in the end for you folks? Like spread?

My biopsy came back as UPSC so my doctor knew up front that we were dealing with a high grade and wasprepared for that.  I have heard of a number of cases though where it was initially a grade 1 at biopsy but post-surgery pathology showed something different.  I feel very fortunate that we knew upfront as I've heard of some having to undergo a second staging surgery due higher grade pathology results.  

Also, I was automatically referred to the director of the Gynecology Oncology department because of my grade.   But, as I am sure others here will also advise, please make sure you have a Gynecology Oncologist do your surgery no matter what the initial grade is.  My results came back with microscopic cells in both ovaries and the pelvic wash which is undetectable on any scans or ultrasounds.

Debi

UPSC 3A

bluesmama said:

I'm back

Surgery was scheduled very early this past Friday although it didn't actually happen until around 9AM. Two hours later, I was done. Stayed overnight at the hospital and was discharged after breakfast.

It's only been 4 days and I've already stopped taking Advil as of this morning. I stopped taking the Vicodin by Sunday morning as I was getting nervous about not having a bowel movement and it made me feel unwell. But it seems my plumbing is just fine. I had body aches yesterday similar to the flu which made me nervous and a slight fever but it's gone today.

I cannot believe I just had major surgery. With many friends and family rooting for me over the last couple of days, I'm finally back in my own home and taking care of myself. 

I've been putting pieces of information together since surgery. The resident surgeon visited me before I was discharged and mentioned a cervical polyp that was probably the cause of the heavy bleeding, clots, and distended uterus. It seemed "smooth" though when they checked it so hopefully it's nothing to worry about. The surgeon briefly mentioned fibroids when he met with my family so I'm guessing they also found fibroids which caused the enlarged uterus. No word on the tumor yet and the official staging/grading is still pending. And finally, the left ovary was kept. They decided to take out the right ovary because it had just burst from the previous menstrual cycle and the corpus luteum was present.

It wasn't clear to me how much I was impacted by the symptoms before surgery until this morning. No bladder pressure. No nagging pevlic pain. No constant bleeding. No bleeding at all (yet). I did hear around the 10 day mark, I may experience some spotting. I still have gas issues from the robotics surgery and some incision pain. Peeing is a new experience that I'm re-learning to a certain extent. I also woke up with an abrasion by my left eye right after sugery which hurts more than my actual surgical incisions. I'm guessing they had taped something there and ripped it off too quickly and took some skin with it.  

Anyway, just wanted to check in with you all. Hope you had a good weekend.

This sounds great!  So glad it went smoothly, but as the other ladies said, take it easy.  Doing too much did cause me some bleeding and then I got mad at myself for overdoing it.  Please let us know what the next steps are when you find out.

bluesmama said:

Y'all are right.

Around 7PM last night, my entire body was sore. It's the kind of body sore you get when you have the flu. I was miserable. I'm staying in bed today lest I bust something.

I've read your posts here and my heart goes out to you that you've had to deal with all this cancer business, especially at such a young age.  On the other hand, being young will help you recover from your surgery quickly.  Like you, I was surprised by how well I felt following the minimally invasive surgery.  I didn't have to think about whether or not I should keep my ovaries, as I have been post menapausal for 12 years (age 60 at diagnosis).  I am hoping that your pathology report will show that you have a low stage and low grade cancer.  Before my surgery, I was told that my biopsy indicated that I had a Grade 2 cancer.   I ended up being diagnosed with a Grade 3 cancer, UPSC, based on the pathology report.  It is my understanding that if a woman's cancer is made up of 10% UPSC, than she is diagnosed with UPSC. I guess I had both UPSC and another serous type uterine cancer that was a Grade 2.

I am wishing you the very best outcome!

Cathy

bluesmama said:

Doctor just called. Stage 1A,

Doctor just called. Stage 1A, Grade 1. Negative lymph nodes. Negative Lynch. He said there's a small chance any last minute test could come back disputing this report but unlikely. No further treatment. I'm not sure how I feel about this. I don't think it's hit me yet but based on my family/friends reaction to the news, I should be thrilled. Of course, my mind is thinking, there are still milestones I need to hit. 1. 3. 5. 10 years. Etc. But at least for the next couple of months, I don't have to fear making plans with people. That was the most depressing thing about this as of late. Every time someone wanted to make a future plan with me I couldn't say yes for sure.

Anyway, thank you all for all your support. I'm rooting for all of you and don't plan on disappearing from the forums. You all were so important in helping me keep a little sane throughout this process so far.

Bluesmama:

Great news.   I know what you mean about how you feel and how to process it all in.   It has been a big rollercoaster for you.  Now is the time to BREATHE!   

So go out and enjoy the stuff you have put off.   My best to you.

Kathy

bluesmama said:

Doctor just called. Stage 1A,

Doctor just called. Stage 1A, Grade 1. Negative lymph nodes. Negative Lynch. He said there's a small chance any last minute test could come back disputing this report but unlikely. No further treatment. I'm not sure how I feel about this. I don't think it's hit me yet but based on my family/friends reaction to the news, I should be thrilled. Of course, my mind is thinking, there are still milestones I need to hit. 1. 3. 5. 10 years. Etc. But at least for the next couple of months, I don't have to fear making plans with people. That was the most depressing thing about this as of late. Every time someone wanted to make a future plan with me I couldn't say yes for sure.

Anyway, thank you all for all your support. I'm rooting for all of you and don't plan on disappearing from the forums. You all were so important in helping me keep a little sane throughout this process so far.

What great news.  So happy you will not need any treatment.  Now is the time to enjoy each day and make those future plans.  Good luck to you.

bluesmama said:

Doctor just called. Stage 1A,

Doctor just called. Stage 1A, Grade 1. Negative lymph nodes. Negative Lynch. He said there's a small chance any last minute test could come back disputing this report but unlikely. No further treatment. I'm not sure how I feel about this. I don't think it's hit me yet but based on my family/friends reaction to the news, I should be thrilled. Of course, my mind is thinking, there are still milestones I need to hit. 1. 3. 5. 10 years. Etc. But at least for the next couple of months, I don't have to fear making plans with people. That was the most depressing thing about this as of late. Every time someone wanted to make a future plan with me I couldn't say yes for sure.

Anyway, thank you all for all your support. I'm rooting for all of you and don't plan on disappearing from the forums. You all were so important in helping me keep a little sane throughout this process so far.

Great news!!!  Congratulation!