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

Hello Blues:

It is really hard to make these decisions.  I was 45 years old when I was diagnosed with endo adenocarcinoma.   At that time, they did not test the tumors for Lynch Syndrome.  (2005).   I just had my original slides tested.  I still haven't heard yet.

I was put into menopause at 44 with Lupron prior to my surgery for 7 months.   So technically I was in a medical menopause since then.  No big deal with me.  (I am now 54).  I am having issues now but its not from the menopause.   I just had a stent put in due to a long term side effect from the brachytherapy (urenal stent) causing scar tissues.  I also have a soft tissue mass which we have been watching (tested negative).

I just wanted you to know that I had a complete hysterectomy.   Tubes, ovary uterus.   When they found cancer (after the fact), I went it for a staging surgery and they also removed my appendix and omentum (places for recurrence).  You may want to ask about having those items removed also.  To me, mentally, it was just better having everything removed.

I say go for a third opinion and see which one fits the others.

Wishing you the best.

Kathy

Bluesmama, the unknown is the scariest part.  I know I feared what was ahead and found out it was all very doable.  That doesn't help minimize your very real fear right now, but I would say to try to take this one step at a time. 

My sister did read somewhere as she was doing research about uterine cancer and all its subsets, and she saw where it was younger women getting this.  I was 49 when diagnosed and thought that was yound even though I was knocking on "50s" door!

As for your type of surgery I would say, right now you know you have cancer and there has been quite a controversy over power morcellation, which uses a device to cut uterine tissue into pieces before removal through small incisions made during minimally invasive surgery. It is thought that this type of chopping up releases the cancer in to your body and can cause problems in the future.  There are women who had hysterectomies this way and later developed cancer.  I don't know if the famous doctor does his laproscopics this way but it is worth asking.  It is worth asking about the da Vinci surgery as well.  (I had the da Vinci and plan on asking my gyn/onc when I see him in October)

Keeping your ovaries would also depend on the TYPE of cancer you have.  Aggressive cancer like UPSC would love hormones to grow and since your ovaries have a lot to do with that - out they went on me!  As far as hot flashes - just like cancer - everyone is different and you just don't know until you get 'em.  I was concerned on what I could "take" if I had terrible hot flashes, hormones were out. 

Please let us know your choice

bluesmama said:

Glimpses of the first week

Glimpses of the first week from me and in one sense a response too that I hope will provide some insight as to what we're going through for those watching like friends and family:

The young part makes me feel like a lab rat. I guess the number of cases in someone who is 40 is rare enough to warrant attention. Hell, being identified just by your full name and DOB everywhere I go feels strange too.

Having multiple doctors, med students and a nurse observe during your pelvic was upsetting the first time but by the second time it was almost amusing. After the second pelvic with doctor#2, the doctor asked if I wanted everyone to leave the room so I could change. I was like, "What for? You all saw my lady bits. There's not much to hide anymore." I was more than happy to slip my panties back on with them in the room. And while I'm trying to keep my sense of humor by calling them gyno orgies, let's be honest, I'd rather not be part of this.

Sitting in the waiting room yesterday in a very busy gynecologic cancer center where I was the only one who looked like a "kid" in my shabby shorts and T-shirt was distressing to say the least. Not to sound like a Debbie downer, but I've quickly realized that the biopsy (I had the pipette) can only confirm that you have cancer. I know that they're mostly accurate, yada yada, but the only thing that really is certain is that I have cancer and that it isn't until staging after surgery when I find out what I really have. So while Grade 1, endometrial adenocarcinoma, endometrioid with squamous differentiation sounds like a low grade cancer, and I've been ignoring all the info for the other types for now, I'm preparing myself for a completely different final diagnosis. 

As for the option to keep the ovaries, I'm glad he mentioned it but it did plant another decision and another seed for stress. When you've ended up on the wrong end of the statistics multiple times in a matter of months, you start to second guess every decision you make. If it's possible to test the existing biopsy slides, I'm going to go through genetic counseling so that at least I can make an informed decision. Having the Lynch mutation does put you at risk for recurrence at about 12% for ovarian cancer. But what's worse is the 80% risk for colon cancer on top of that. If they end up not being able to use the slides for pre-surgical testing, then I'll probably get rid of the ovaries. I'll let you know. Part of me wants to take the risk because I'm generally a risk taker but cancer is a different ball game. 

On my way out of the hospital, there was a very old lady who was pushing the wheelchair of her husband off of the elevator yesterday who turned around and looked at us before the door closed and said, "Good luck" to all of us. That made my heart skip a beat. I looked around the elevator and realized, these people are all patients and so am I now.

All the studies and Googling doesn't change that I have to start accepting that I'm living with this disease. The information I find online, if anything, has made me feel worse, rather than better. So I'm not sure if it's worth putting too much weight into what I find. Yesterday, was the first day I actually thought about "fighting" this rather than being scared and crying over this. But I'm sure we have all gone into this journey with as much information as we can digest. 

I'll be reading a lot of the threads on this forum over the weekend. If you have any questions, please don't hesitate to ask. And please, if you notice anything strange about your menstrual cycles especially if you're having heavy, clotting periods, with irregular cycles, do yourself a favor and go through all of the tests, especially the biopsy. I delayed the biopsy a month and regret it. I delayed seeing anyone for the clots that started a few years ago. I regret that too. 

 

 I agree with you completely about getting symptoms checked at first sign!  However, eventhough that is exactly what I did, my cancer was already at stage 3.  Don't beat yourself up about delaying.  There are more important things to concentrate on now.  I'm being tested for Lynch also.  My tumor was tested and showed two of the four proteins are absent. Pretty good sign that I have it. Next will be DNA testing but that won't be until Sept 5. 

Barb

bluesmama said:

Good luck on the testing.

Question. When you say Stage 3, what type of cancer were you diagnosed with?  What grade? Like many of you (I'm guessing), you went through all of the possible combinations of grade/stage to figure out likely treatment, prognosis, etc. My first onc said, since it was first diagnosed as Grade 1, it will likely stay that way - a good thing. My inner voice's response was, "yeah, that's what my gyno said when she said the likelihood of this being cancer was extremely low given my age. Look at me now."

I've Googled "grade 1, stage 3/4 endometrial adenocarcinoma" and haven't gotten any good leads. Most searches seem to dump out "grade 1, stage 1/2." There's got to be cases of the former. 

I know I shouldn't beat myself up over this but it's so difficult not to. Woulda, coulda, shoulda.

You ask a good question because typcially the women here define their cancer as GRADE and STAGE.

Grade 1 is low grade 3 is high.  Agressive cancers are automatically a grade 3.  Stage is how  far it is found to have advanced in your body.  1a is very early and hardly anywhere and 3/4 has spread.  With that said you can start doing the math in your head on how many variables you can have. 

Not nothing anythiing about cancer I remember being told it was Grade 3 and I asked "what is the highest grade?" and lost in thought when she said "3".  I didn't know about Staging then.  

As the others ladies said, please don't beat yourself up.  You are doing something about it now and that is what you have to go with.

Hi Blue,

I am 39, and was diagnosed at the end of May with endometrial adenocarcinoma, grade 1 at time of diagnosis. My gyn/onc gave me 2 different treatment options because of my age. One option was surgery and she strongly suggested the removal of the ovaries, but she would leave it up to me. It is definitely a hard decision and is really up to the individual. I in the end had them removed but I didn’t make that choice lightly. I had my surgery and staging in June. After my surgery the pathology report came back as grade 2, stage 1a. So I started chemo in July.

At my chemo session I felt like a kid. I was the youngest there by at least 15 years. The great thing was they were all willing to talk and give me advice.

If you have questions or need to talk feel free to email me. I will be happy to listen and talk.

Sandra

bluesmama said:

Good luck on the testing.

Question. When you say Stage 3, what type of cancer were you diagnosed with?  What grade? Like many of you (I'm guessing), you went through all of the possible combinations of grade/stage to figure out likely treatment, prognosis, etc. My first onc said, since it was first diagnosed as Grade 1, it will likely stay that way - a good thing. My inner voice's response was, "yeah, that's what my gyno said when she said the likelihood of this being cancer was extremely low given my age. Look at me now."

I've Googled "grade 1, stage 3/4 endometrial adenocarcinoma" and haven't gotten any good leads. Most searches seem to dump out "grade 1, stage 1/2." There's got to be cases of the former. 

I know I shouldn't beat myself up over this but it's so difficult not to. Woulda, coulda, shoulda.

Sorry, I guess I should have given more info in my reply.  I was diagnosed with endrometroid adenocarcinoma stage 3C grade 2.  My regular ob/gyn could tell nothing wrong during regular exam, but, since I had spotting, she did a biopsy.  It came back saying cancer & to check my lymph nodes. I had a hysterectomy. The pathology rreports gave my stage 3 diagnosis.  I think even the gyn/onc was surprized it had gotten so bad so fast - he seemed so upbeat in hospital - saying he had gotten all cancer he could see. But it had spread over half way thru uterus and into lymph nodes.  So chemo. external radiation & internal radiation were scheduled.  I have finished chemo and some of the external radiation. Just recently it was decided to skip the internal and add more external treatments.  I know the worry and fear are overwhelming right now BUT it does get better. Still there but better. It helps when treatment starts - you realize you can do it and now you are fighting!

Barb

bluesmama said:

Welcome to the club

I'm sorry to hear that, Sandra. I hope you're holding up well with chemo. How have you been feeling with the instant menopause combined with the chemo? How was your recovery? Did you have robotics surgery?

Hi Blue,

I had a Vaginal Laparoscopy Total Hysterectomy, which included cervix, tubes and ovaries. My recovery from surgery was pretty close to textbook. I didn’t have any issues with my recovery. I was out of work for four weeks. I was sore and tired for most of that time. I was still slightly sore when I went back to work. After my surgery my gyn/onc was upbeat and thought that surgery was all I would need. At my first post op appointment my doctor told me that the pathology report came back and said the cancer had spread to my myometrium and the pelvic wash came back positive for cancer. Since it had spread and since the pelvic wash came back positive that lead to the need for chemo and internal radiation.

I am doing the 6 rounds of chemo first and then I will do the radiation. My first round of chemo went pretty well except I had a reaction to Taxol. So they stopped the taxol drip and gave me more steroids. Once the steroids were done they started the Taxol back up at a slower drip and I was fine. After chemo I have had very few side effects so far. I go for my second round of chemo this coming Friday and am hoping that the side effects aren’t any worse.

As for instant menopause I haven’t had many issues with that yet either. I do have night sweats from time to time but so far nothing too bad. I am not taking any estrogen since my cancer is hormone based. My doctor did tell me that if my symptoms got too bad she could prescribe a synthetic hormone to help but so far I haven’t needed it.

To be honest with you the worse part of this whole thing is that I haven’t been able to (until just recently) babysit my nieces and nephews.

I have a great support system of family and friends. This discussion board has also helped me out so much. I have read many posts. In fact when my brain wouldn’t turn off I found reading the threads far more informative and less scary then searching the internet for answers. I have also visited the chatroom and that has many people from other discussion boards that have valuable insight as well.

I am praying for you.

Sandra

Ardnasnit said:

 
Hi Blue,
 
I had a Vaginal

 

Hi Blue,

 

I had a Vaginal Laparoscopy Total Hysterectomy, which included cervix, tubes and ovaries. My recovery from surgery was pretty close to textbook. I didn’t have any issues with my recovery. I was out of work for four weeks. I was sore and tired for most of that time. I was still slightly sore when I went back to work. After my surgery my gyn/onc was upbeat and thought that surgery was all I would need. At my first post op appointment my doctor told me that the pathology report came back and said the cancer had spread to my myometrium and the pelvic wash came back positive for cancer. Since it had spread and since the pelvic wash came back positive that lead to the need for chemo and internal radiation.

 

I am doing the 6 rounds of chemo first and then I will do the radiation. My first round of chemo went pretty well except I had a reaction to Taxol. So they stopped the taxol drip and gave me more steroids. Once the steroids were done they started the Taxol back up at a slower drip and I was fine. After chemo I have had very few side effects so far. I go for my second round of chemo this coming Friday and am hoping that the side effects aren’t any worse.

 

As for instant menopause I haven’t had many issues with that yet either. I do have night sweats from time to time but so far nothing too bad. I am not taking any estrogen since my cancer is hormone based. My doctor did tell me that if my symptoms got too bad she could prescribe a synthetic hormone to help but so far I haven’t needed it.

 

To be honest with you the worse part of this whole thing is that I haven’t been able to (until just recently) babysit my nieces and nephews.

 

I have a great support system of family and friends. This discussion board has also helped me out so much. I have read many posts. In fact when my brain wouldn’t turn off I found reading the threads far more informative and less scary then searching the internet for answers. I have also visited the chatroom and that has many people from other discussion boards that have valuable insight as well.

 

I am praying for you.

 

Sandra

 

Welcome to the site.  Wishing you luck with your second round of chemo.  I too had a reaction to my first taxol.  I could never get it at the regular rate, but at a slow rate I have had 19 cycles of taxol.  

I guess by now you have lost your hair.  I hope you are adjusting to that.  Glad you have a great support system.  That makes things much easier.  glad you are finding the posts from this discussion board helpful.  It is current and real time information.   It is less scary than outdated internet statistics.  

Good luck on Friday with chemo number two.  I hope your blood counts stay up so you can enjoy your nieces and nephews.   In peace and caring.

bluesmama said:

Welcome to the club

I'm sorry to hear that, Sandra. I hope you're holding up well with chemo. How have you been feeling with the instant menopause combined with the chemo? How was your recovery? Did you have robotics surgery?

Welcome to the site and sorry you have to be here.  You have some difficult decisions to make before your surgery and then after surgery.  I had robotic surgery and recovery was very quick.  I was in the hospital only overnight.   My staging came back UPSC stage 3-C, high grade.  

The fear of the unknown is great.  I had never had surgery before, so I did not know what to expect.  I had minimal pain.  I started chemo 3 weeks after surgery.  It was very doable, too.  The fear of the unknown was there, too.  I had the sandwich treatment of chemo, radiation, chemo.  All of it was much better than anticipated.  

Wishing you luck in making your decisions.  In peace and caring.