Results ~ January 20, 2016

Hubby is cancer free! My dad went home from rehab. And I got the results of my CAT scan today!

Dr Miller confirmed that my colonoscopy results were fine.  

The CAT scan confirmed the mass on my left side is on the bowel.  There is another on the right side, higher up.  My estrogen and FSH levels are "normal" for someone who actually has ovaries. For me, they are all wrong.  He pulled my pathology from Sinai and his operative notes.  Uterus, tubes and ovaries were removed intact.  His notes indicate that he removed an extra 2 cm beyond each structure just to be safe.  

So what does that mean?

He suggested that when he detached the ovary from the ovarian artery, the artery may have retracted and took some endometriosis or ovarian tissue with it.

He is proposing Lupron for 3 months to dry up the worst of the estrogen. Then surgery.  The 3cm spot on my left side is on the colon so there’s always a possibility of needing to remove a portion.  Surgery would be an open laparotomy down my left side so that there is easiest access to the colon.  He believes that this is recurring endometriosis or an ovarian remnant.  

I asked about delaying all of this a few months.  He said that it can keep getting worse and could involve the bowel more.  My questions for him are, 1. if I do the Lupron and it dries stuff up, is that stuff gone or just gone enough that he can’t see it and it could grow back.  2. after the Lupron, can he just do a laparoscopic surgery to see how bad it actually looks in there before deciding if I need the big one.  A very unlikely possibility to rule out is that there is a type of ovarian cancer that makes its own estrogen.  He is hopeful it’s not that, but he’s a cancer doctor so that’s always on his mind.  My third question, I wonder if he can rule this out sooner without surgery?  

Now I wait for the first lupron shot! I never thought that I would be going down this road again. It has been 10 years since I was on lupron and 10 years since my major surgery and colon resection!

Colonoscopy January 15, 2016

I found out in December that I would need a colonoscopy.  They wanted to schedule it for December 28.  I decided to wait into January, after hubby's PET scan results.  I'm glad that I did because my dad ended up needing open heart surgery on December 28 and was the 9th person in York to receive a VAD. 

My CAT scan on Tuesday, 1/12 went well.  Fairly uneventful with the exception of meeting some cool people with interesting ties to my life.  The tech who placed my IV lives in my neighborhood, there were two CAT scan techs.  One is related to a co-worker and the other shared my birthday.  A quick visit to Mom & Dad who were living at the Rehab Hospital next door, and I was back to work!

Given my track record of failing miserably at bowel preps, I began taking a full dose of Miralax every evening for 10 days prior to my colonoscopy and again on the morning of my prep.  The stool at this point was pencil-thin, which was very concerning to me.  This can indicate several things including narrowing of the bowel due to scar tissue and a stricture.  Things were moving well.  I was confident!  I've always started the prescribed drink at noon the day before a procedure.  Against my better judgment, I began drinking at 4:00 according to the instructions given.  I did my best and had finished more than half of the gallon drink.  I was feeling ill and had the shakes so I decided to rest and cover up.  I FELL ASLEEP!  I had every intention of drinking a lot more water even if I couldn't continue the prep.  No drinks after midnight, and I woke up at 2:30 a.m.  Ugh!  I emptied what I had left in me and took one big gulp of water.

Despite my best intentions, I once again did not "run clear."  It still remains one of my life goals!

I was a lucky girl and was able to have two moms with me that day.  My mom came from rehab and my mother-in-law drove me.  Jason's PET scan the week before was cancelled when the machine broke down while he was in it.  He was rescheduled for the same time as my colonoscopy.  My surgeon was able to complete the scope even though I was not clean.  He found no polyps and no narrowing.  I was pleasantly surprised!  Follow-up with Dr. Miller on 1/20!

It's not over, yet! January 6, 2016

I've been having some pain and spotting. I shouldn't be having either!

The pain is localized to my lower left quadrant and radiates through to my lower left back. It's a burning pain that seems to be directly related to my constipation troubles. Having a bowel movement or urinating during one of these flares is very painful. Just like old times, I've had two unexplained episodes with fever and abdominal aching. My constipation seems to be getting more frequent, taking longer to resolve and not responding to days worth of laxatives.

The spotting started in June 2015. Since I have no uterus, no ovaries, no tubes and most importantly no cervix, this was concerning. There was a lot going on in our lives this year so I attributed it to stress.

The spotting was typically a transparent brownish color. In September I had a one-time large amount of a syrupy rust brown discharge very similar to an endometrioma that I had years ago. In December I had actual red blood for the first time. I made an appointment immediately! I saw Dr. Naymick who said that all of my tissue looked normal. No obvious reason for the bleeding. He recommended a colonoscopy and an ultrasound.

The ultrasound was interesting. The tech was really confused that I was claiming to have had all of my parts removed since she was seeing a very defined 3 cm structure on my left side that she believed to be an ovary! She stepped out and came back with a doctor. Dr. Neiswender suspected either ovarian remnant syndrome or a peritoneal cyst, but this was most definitely not an entirely missed ovary!  

I had a blood test that same day in mi-December 2015. Ovarian remnant syndrome has many symptoms including painful bowel movements and urination. Estrogen level should be less than 30, mine was 303. I saw Dr. Naymick again. He suggested that Dr. Miller is where I should go next. Dejavu anyone?  If this ovarian remnant needs to be removed, he's the most qualified to do it!

I saw Dr. Miller today, January 6, 2016. Happy New Year! He isn’t convinced that my high estrogen is an ovarian remnant, there may be leftover estrogen in my body.  He’s considering a month or two of Lupron to squash any remaining estrogen and see if it lowers the numbers.  On this day, surgery is a last option. I agree!

I had another blood test to see if the estrogen number has changed.  He’s glad that I’ve scheduled the colonoscopy because that will show if the constipation is getting worse and more painful because of scar tissue narrowing my colon. I think it's called a stricture. If so, he said that Dr. Nicholson can use a balloon-thing to stretch it out during the colonoscopy.  If I have a structure and if the balloon doesn't work, he may consider another colon resection of the damaged area. That's a lot of ifs that I'm not too concerned about right now. IF I need colonf surgery, then Dr. Miller would also remove any remaining endometriosis (hopefully none) and the possible ovarian remnant!

Dr. Miller also wants to rule out any scar tissue on my ureter. If there is scar tissue, it could be causing a backup and enlargement of my kidney.  Next week I'll have a CAT scan to look at the kidney and anything else suspicious and a colonoscopy!