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

bluesmama
Posts: 124
Joined: Aug 2014

Hello. I'm a newly diagnosed uterine cancer (endo adenocarcinoma, squamous differentiation). I've gone to two gyn oncologists and both offer slightly different options. Both encouraged me to test for Lynch because I got this way too young (40) and I don't "fit" the typical case. But one felt he could possibly use the pathology slides to determine whether I'm a carrier whereas the other one wanted to wait until after surgery and use the actual tumor. The one who thought it may be possible to grab that Lynch info suggested that I consider leaving my ovaries behind because my age and current stage indicates it as an option. Removing the ovaries at this young of an age not only exposes me to all the nasties of surgical menopause but the risk for heart disease, osteoporosis and cognitive disorders is high at a younger age. So it's an issue to me of do I want to live 20 years well or 30 years not so well. I also have a choice of going with a da vinci surgeon who is younger and has done "many" or a famous doctor who is older but admitted he's only done it for a few years although he has much more experience with lapro without robotics and open abdominal. One is at MSK and one is at NYU. Decisions. Decisions. So difficult.  

Kaleena's picture
Kaleena
Posts: 1961
Joined: Nov 2009

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
Posts: 124
Joined: Aug 2014

Thanks for your response.  I'm terrified of post-surgical life.  :(  Possible chemo and/or radiation depending on staging. I want to believe it's a grade 1 as the biopsy indicates but I've already read one too many stories of that being inaccurate.  And the fact I waited so long now that I think about how long some of these symptoms have been going on makes me think I've had this cancer growing in my for a few years. Am I playing Russian roulette? 

Although I'm only 40, I have been noticing symptoms of getting older already - grey hairs, hair falling out, a few hairs on my chin, skin getting less supple, more fat on the belly than I'd like, etc... so I wonder if I've been starting early. Not hot flashes although I sweat just sitting in the sun for a few minutes but that may be because I cut my hair short and it's just more noticeable.  I'd be interested to know if anyone decided to keep their ovaries with the hope of a more natural menopause. I will definitely inquire about the appendix and other areas. I never thought about that.

 

blarneygirl
Posts: 5
Joined: Nov 2014

Blues

I feel your frustration.  I was Dx in 2013 with Stage IIIC endometrial cancer.  According to the GYN/Oncologist I had it for a while.  One Gyn told me if you have to have a gyn cancer, this is the one to have.  My tumor was grade 1.  It's just becasue it got into my lymph nodes that it made it stage III.  I was horrified when I heard that.  i had a total hysterectomy becasue I too wanted everything out.  I did well through the chemo and radiation with no ill effects.  Even though I had everything removed, I still suffer from all the menopause stuff.  Hair loss, weight gain, facial hiar.  It's depressing sometimes, but...

I feel fine now.  You will get through this.  We are here to help!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

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
Posts: 124
Joined: Aug 2014

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. 

 

StrongerthanIthought's picture
StrongerthanIthought
Posts: 55
Joined: Feb 2014

 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
Posts: 124
Joined: Aug 2014

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.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

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.

 

StrongerthanIthought's picture
StrongerthanIthought
Posts: 55
Joined: Feb 2014

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
Posts: 124
Joined: Aug 2014

You're in my thoughts Barb!

I now realize there's any army of survivors before me. I've read nearly every thread in this forum. All of you inspire me to fight. I met up with some friends today who I haven't updated as well as my closest friends. As awkward as it felt for them and myself... and good lord, I've quickly realized, I can't contain the cancer news at all from people... I'm ok when they ask if "I'm doing ok." 

Kaleena's picture
Kaleena
Posts: 1961
Joined: Nov 2009

Dear Blues:

Don't beat yourself up over not getting things checked out any earlier.   You may have gotten the run around anyway due to your age.   I was having certain symptoms and I kept going to my PCP for answers.  I was having bowel issues, etc.   My PCP said I was probably depressed but he also ordered me a colonoscopy.  My colonoscopy was fine but I was still having symptoms - burping, bloating, bowel pains.   I went to my gyne who did an internal ultrasound - only found a tilted uterus and a deep ovary.  He also did a laparoscopy wherein he said it was just severe endometriosis and that I needed a hysterectomy.   I was put on Lupron for six month to help with the surgery.

After my hysterctomy, I went back for my check-up.  I was told then that they found cancer in my uterus and in my left ovary.     I had reached out over a year trying to get answers.  I knew in January of 2004 that something was wrong and didn't have my surgery until Sept. 2005.    Even with certain tests, they weren't able to determine I had cancer.   I was diagnosed with Grade 2 Stage IIIa endometrial adenocarcinoma.    However, they weren't able to determine where it originated from.

Just be your own advocate.  You don't need tests and stuff to know how you feel.   Everyone is different.  Although they base diagnoses and symptoms on a "basic" outline, I, for one, don't fit that outline.   I went to a urologist four months ago who said I didn't exhibit any signs of a blockage (although PET scan showed narrowing), he refused to place a stent.  Less than four months later, the blockage is more and the kidney is stressed but I still didn't exhibit any symptoms of a blockage but yesterday I got a stent put in and the doctor said it was like a river of water that flowed once the stent was placed.  By the way, I went to a completely different urologist.

Its good too that you have humor.  You have to when dealing with this.

My best to you.

Kathy

 

P.S.  I just got my lynch test back today - it was negative.   (however, I am surprised that they tested my slides back from 2005 - I didn't know they lasted that long)

bluesmama
Posts: 124
Joined: Aug 2014

I can't believe the hurdles you had to go through to get your symptoms taken seriously. I could barely keep it together every time I ended up in someone's voicemail box while trying to transfer records from one hospital to another. I had to allow my friend to step in and use her community connections to get me to a live person on the other end. The other hospital I've now decided to continue treatment with including the surgery is much more responsive but that is probably because cancer is their only business. So when they ask for something, they probably really need it. The previous hospital is competent but they deal with many other pathology slides and radiology images unrelated to cancer. Perhaps, they didn't understand the urgency. Perhaps, they're under-resourced. I'll never know as the whole ordeal was enough for me to switch immediately.

Now that my friends and most of my immediate family know my diagnosis, some have shared with me their symptoms. At least one has been having the same as mine and has refused to get a biopsy even though it was recommended. She finally told me tonight that she has an appointment next Friday after our mutual friends urged her to get tested already. Among my circle of friends, we have already lost a number to cancer. We have more that are living with cancer today. I'm currently haunted by a moment I had with one acquaintance I met a few years ago at a memorial. I will never forget that look in her eyes. It was something much deeper than the sadness for a lost friend to cancer. I learned later that she had been diagnosed with an inoperable cancer the day of the memorial and passed 8 months later. 

I've read a number of your posts. I'm so grateful for such positive energy. Some of the other forums I've visited just didn't have the same good vibes as this one does and I'm sure it has everything to do with individuals like you. Thank you.

Kaleena's picture
Kaleena
Posts: 1961
Joined: Nov 2009

Blue:

Thanks for your kind words.   It was through this site that I learned so many things and what to ask doctors.  It has helped me tremendously.  Even if I didn't respond to a post, I read what they were saying and applied stuff that fit my condition.   I was always a back seater but now I take control.  I've learned that doctors are there to give you advice as they see it.   We are the ones that really make the decisions.   Some doctors are well for that; others will tell you they wont treat you.   I love the doctors that gives you options.

When I was diagnosed, I thought it was the end of the world.   I too lost friends during that time who were in their 30s and 40s.  Not to cancer, but to other things.   Then I learned to take things one day at a time.  Sure, I have set backs.  Every once in a while I get the "i feel sorry for myself".   I'll have my cry.  Then get on with life.

I guess what I am trying to say is that we are here for you, Blue.   Sometimes we just want to rant about stuff that we don't want to tell our friends and family.  This is a good place to do that and we need to do that at times.

Thinking of you.

Kathy

Ardnasnit's picture
Ardnasnit
Posts: 30
Joined: Jul 2014

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
Posts: 124
Joined: Aug 2014

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?

Ardnasnit's picture
Ardnasnit
Posts: 30
Joined: Jul 2014

 

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

 

DebiR
Posts: 37
Joined: Jul 2014

Hi Sandra,

I had a reaction to the Taxol also.  They did the same, stopped the drip, gave me some more of something and then restarted it slower and all was fine.  The second round they gave me more Benadryl and maybe something else to start and started the drip slower (25%) again but I still reacted to it.  They just stopped it and restarted this time. Not as bad as the first time but after that they said they wouldn't attempt Taxol again.  I was disappointed because I'm in the GOG-0258 trial and carbo/taxol is required for me to stay in the trial.  

I found that the Cleveland Clinic had developed a desensitization protocol for patient’s experiencing a second hypersensitivity reaction to Taxol so I talked to the research nurse assigned to my case about it.   She said that she was familiar with it and would check with my doctor.  I found out on Friday that they are going to give this a try so I will get at least one more round of Carbo/Taxol.  I sure hope this works because I want to stay in the study and I feel that Carbo/Taxol is the best combination available for me.  

Debi

UPSC 3A

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Hope you are able to get your third  taxol and remain in the study.  Hope you continue to well.  In peace and caring.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

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.

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

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.  

bluesmama
Posts: 124
Joined: Aug 2014

Thanks Ro! Right back at ya!

bluesmama
Posts: 124
Joined: Aug 2014

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.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

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
Posts: 124
Joined: Aug 2014

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?

DebiR
Posts: 37
Joined: Jul 2014

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
Posts: 124
Joined: Aug 2014

I'm glad you knew ahead of time. I'm lucky to have several great cancer centers with reputable gyno oncologists and my health insurance covers all of them.

I chose my gyno oncologist based upon his reputation and years of experience over the others but I have no doubts the other surgeons were equally skilled. The tie breaker was really over minor details of the institution where they edged out the competition.  I figured, since I've been on the wrong side of the statistics all this time, why not do what I can to pad myself with a little bit of an edge.

bluesmama
Posts: 124
Joined: Aug 2014

I just went in for my pre-surgical consult and testing. The good news is I've tested negative for Lynch syndrome. So that's one less thing I have to worry about. Leaving ovaries is still on the table as an option although the doctor said his official recommendation would be to remove ovaries with concerns with quality of life issues since I'm so young.  He's left ovaries in several patients falling under my potential profile (young, grade 1, early stage) and they've survived past the 5 year mark as studies have shown. I say potential because obviously final pathology can't be determined until after surgery. I'm strongly leaning towards leaving one ovary behind and leaving it up to him to decide which one to leave. If the final pathology results show spread then we'd go back and take the remaining ovary out. Hopefully, no radiation/chemo will be needed, otherwise, this entire exercise is somewhat futile. My surgery is coming up in two days (robotics), so I'm hoping for good results. The waiting continues and this is the worst part about cancer. Wishing all you ladies remissions and cures. 

In the meantime, I plan to recover from surgery as quickly as possible, quit smoking, lose the remaining 30 pounds I've been struggling with and get those statistics to work with me. My worst fear was surgical menopause and my ability to cope with that and getting my health back in step. I'm hoping leaving the ovary will buy me some time to reduce the overall risks for the long term. Of course all of this could be derailed with a worse staging result but i'm hoping for the best.

ConnieSW's picture
ConnieSW
Posts: 1442
Joined: Jun 2012

I'll be hoping for the best for you too.  Get back to us when you c an.

bluesmama
Posts: 124
Joined: Aug 2014

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.

Kaleena's picture
Kaleena
Posts: 1961
Joined: Nov 2009

Hi Blues:

It seems that you went through surgery pretty well.   It is amazing how it feels to be without pain, isn't it?   My only advice is to take it easy.  Do not lift anything heavy for at least 6 weeks.   I ended up with a huge hernia after my surgery.  I wish you well with the results.   Thanks for posting.

Kathy

bluesmama
Posts: 124
Joined: Aug 2014

I'm going to try to remember I'm still healing on the inside. I did move my car today. I live in NYC and we have crazy alternate street parking rules. I don't think I strained anything but that's as far as I went as far as exertion goes.

I'm trying to keep things in perspective. It's not over yet. The surgery and recovery is the easiest part per the doctor. It's the stuff that I need to deal with potentially after that is going to be tough.  i have an appointment with a nutritionist later this month. I'm going to do anything and everything I can to make the statistics work with me. I quit smoking on Friday. Cold turkey. With all the aches and pains from surgery, I never noticed the withdrawal symptoms. Here's to 5 days strong without a cigarette.

Keep in touch!

ConnieSW's picture
ConnieSW
Posts: 1442
Joined: Jun 2012

So glad to hear the surgery went well.  I second what Kathy said.  the outside of you may look pretty normal but the inside is a different story.  Congratulations on the smoking.  Pat tourself on the back for me.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

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
Posts: 124
Joined: Aug 2014

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.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

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
Posts: 124
Joined: Aug 2014

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.

Kaleena's picture
Kaleena
Posts: 1961
Joined: Nov 2009

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

thumb_snoopy-happy-dance.jpg

bluesmama
Posts: 124
Joined: Aug 2014

Thanks Kaleena! 

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

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
Posts: 124
Joined: Aug 2014

I come back to the forums regularly to check up on you and a number of others too!  Be well.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

Great news!!!  Congratulation!

Ardnasnit's picture
Ardnasnit
Posts: 30
Joined: Jul 2014

Congratulations! I am so glad that you don't need any further treatment.

bluesmama
Posts: 124
Joined: Aug 2014

Thank you both. Hope all is well.  Just checking in. All is well. Some post operative issues nag me a little but I haven't felt healthier in a long time. Still don't smoke. Knock on wood!

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

Congratulations on the outcome of your surgery and even more on stopping smoking. That is great news. I stopped smoking 25 years ago and it was the best thing I ever did. I have not been on the board lately but wanted to let you know that someone else is glad you came through the surgery. Trish

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

i have been thinking of you and wondering how you have been doing.  I hope everything is going good for you.  Hope you had agood summer.

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

I am doing Friday good. Had my hernia and gallbladder surgery in April. Took a while to get over that, but doing ok now.  I went for my sid month check up in October and my ca125 blood work was right on point at 13.1 where it has been generally the last 3times that I had it done. I go back next year in March. Working a lot. Spending quality time with my grandson and family and friends. Doing good. I took time off from the board because I got really upset when Jan passed I could not handle that to much so dropped off. I talked with my gyn onc dr about and she said she did not want me to dwell on it because being upset and emotional gets your immune systems out of whack. She is right but I still took it hard.  

 

Ro glad you are doing good and now in Florida for the winter.  No time ~ How was the walk in DC? I really looked into going this year but money did not allow it. Hope everyone is doing ok and living life large and to the fullest. Trish

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

Trish, the weather in DC was cold and windy!!!  Oh my gosh!!!!  Of course, later in the day the wind died down and the sun came out, but as my co-worker who suffered with pulmonary disease said, "We have put up with worse!" 

I did get to meet one of the beautfiul young women from the page.  She lives in the DC area and found out about it on this board and I can't wait to see her next year!!!  I hope to meet more women next year!

You are right though that WE HAVE TO LIVE LIFE LARGE! 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2585
Joined: Mar 2013

I agree with Ro, it is good to hear from you Trish!!!

ConnieSW's picture
ConnieSW
Posts: 1442
Joined: Jun 2012

Been thinking about you.  Thanks for checking in.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Trish, like the others here, I have been wondering how you are doing. Glad to hear that you are doing just fine. I also felt sad about Jan and there are times when I don't want to read about the effects of uterine cancer. Usually, when that happens, I just want to bury my head in the sand and forget about cancer for a while. Although I am often inspired by the extraordinary resillience of the women who post here, I am also affected by the setbacks that often occur.  This is such a terrible disease and it saddens me that it is so common. We are all affected by it. My brother, in just two years, has had to deal with his son's lymphoma diagnosis and his kid sister's  uterine cancer diagnosis. Yesterday, my bother told me that his closest friend from college was just told that he has metastatic cancer. He has a brain tumor that is metastatic melonoma, lung or kidney cancer. The primary site has yet to be determined.

Cathy

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