one opinion, two opinion, three opinion?

I had a follow up apt with my surgeon today.  I asked her some questions and wasn't happy with the answers.  She shot down my theory of the cancer being in the ovary and being too big for the chemo to take care of it all.  She said that when I had my colon resection that the surgeon would have noticed if there was anything abnormal in the ovaries and that if there was anything microscopic the chemo should have taken care of it.  So this puts us back to believing that for whatever reason the cells in the ovary were resistent to the chemo.   We are still hoping that the chemo worked elsewhere but who knows.

I asked her if she has seen any cases where the colon cancer metastisized to the ovaries and then never showed up anywhere else again and she said no.  All the cases she has seen, the cancer showed up elsewhere.

I then met with my nurse navigator at my oncologists office.  She confirmed my suspicion that my oncologist has never seen a colon cancer ovarian metastisis; therefore, we are now looking for a 3rd opinion. 

Really wish someone could give us something concrete that would make us feel like there is something we can do that can guarantee something positive out of all of this.  No one can tell us that the other chemo would work or that the HIPEC will work.  It is not good news when your nurse cries with you at an appointment! 

My dad got me in touch with Cancer Treatment centers of America, the ones you hear advertised all the time.  I was skeptical of them but it turns out the hospital they have that takes our insurance doesn't even have a colorectal oncologist.  I have made 2 calls to Dr. Saltz at Sloan to see if there are any other oncologists out this way he can recommend, haven't heard back.  I also have a call into a colorectal oncologist in boston at women and brighams recommended by a family member to see if he has dealt with ovarian metastisis (waiting to hear back).

As much as I hate statistics its hard not to get depressed reading them when I'm doing my research.  People with colo-rectal cancer metastisis to ovaries or to (insert other long list of organs) are 55% more likely to get peritoneal carcinomatosis.  The survival for this is 5 to 13 months and thats after IV chemo.  Using HIPEC for early pertioneal carcinomatosis results in 48-63 month survival.  Of course this is one study but hard to not cringe at the numbers which is why I would want to do HIPEC but no one is talking about cures here, just prolonging life.  Hopefully doing HIPEC would prevent that from ever ocurring with me but no one can tell me that it will do that!  So why not be cut open and have poison poured all over your abdominal cavity at 110 degrees F knowing it might not do any good???

decisions, decisions

I was able to talk to the nurse of the dr at Sloan yesterday.  Unfortunately the Dr will not call me, he is saying i have to go back to NY to get his opinion.  When we were seeing him last month though, he did tell us that if it was cancer in the ovary, that his suggestion was to do no further treatment.  From what the nurse told me yesterday it sounds like his opinion hasn't changed.  There is no proof any of the treatment options would do any good and there are risks involved.  I think he doesn't believe in treating when there isn't active visible disease.  He would do scans every three months to check for growth. This is about all I was able to get out of her.  he has a good point, I would like some justifications to his reasoning but not sure I will be making another trip to NY in the next few weeks.  So I am left to wonder if i should get yet a 3rd opinion, go to NY to hear his reasons, or make a decision based on what info I have.  Pray for guidance, patience, strength, and comfort.

HIPEC

So I met with the dr who performs the hyperthermic intraperitoneal chemotherapy (HIPEC) or chemo bath.  It felt more like a 2nd opinion, which was good.  He is a surgical oncologist, although, his lab coat looked more like a chef uniform and it had some stains so I was trying to ignore the image of him cooking while we discussed my future treatments.  (sort of kidding!)

I haven't made a decision yet but I am leaning toward doing the HIPEC.  I have no interest in doing the IV chemo FULFIRI for 6 months.  I don't believe that the first 6 months of FULFOX chemo didn't work.  I believe that the cancer on my ovary was there when they took out my colon tumor.  It hid out during chemo and the cyst grew in response to the cancer.  This showed up on the scan and lead to the removal.  I think that the cancer cells got to the ovary through close proximity and not through the blood, thus proving that the chemo did work.  If the Dr was expecting a tiny nodule on my lung to only shrink during chemo, then clearly the cancer on the ovary was big enough not to be eliminated with the chemo and then grew after.  The next part I am not sure of.  The point of doing the HIPEC would be to avoid any cancer growing on my peritoneum, which is hard to detect and treat.  I am not sure that there are no other loose cells out there in my abdomen that the IV chemo didn't kill.  This is the only reason I would do the HIPEC. 

The surgery would be in about a month.  The recovery doesn't seem too bad but just like the oophorectomy, he plans to do it laparascopically unless there is too much scar tissue and he needs to make a bigger incision which leads to longer recovery.  I would have an NG tube for a few days which totally freaks me out.  I feel like opting to do the HIPEC is doing something instead of nothing which I feel comfortable with at this point.

On another note, after my last post I was flooded with emails, comments, texts and phone calls and I feel so loved.  Thank you to everyone who has continued to support me as this journey seems to just get harder and more difficult to navigate and survive, but I am doing it and it is because of all of you supporting me and helping me through this.

more chemo?

I had an appointment with my oncologist yesterday.  He had a preliminary on my pathology report.  The cancer was only in the left ovary.  They were not able to tell if it got to the ovary through the blood or through being next to my colon where the tumor was.  Basically it sounds like the 6 months of chemo I did, did not work because it grew on the ovary during treatment.  He gave me three options.

1.  do NO more chemo and do scans every few months to monitor and check for growth
2.  do the chemo bath.  This would be done laproscopically where they would put chemo inside my abdomen and heat it to 110 degrees.  This would hopefully take care of any other cancer that is inside my abdomen.  I believe this idea is based on the theory that the cancer was able to metastasize on the ovary by being in close proximity to the original tumor and not travel through the blood.  I have an appointment next week to meet with the surgeon who performs this and find out side effects and exactly how it is performed.
3.  do another 6 months of a different chemo.  It would be the same routine of every 2 weeks, 12 times.  It also involves a pump that would be on for 2 days after the IV treatment.
4.  Do both option 2 and 3. 

I am sitting in the Drs office with complete neuropathy in my hands and feet. It is no longer just my finger tips that are numb, it's my entire hands.  When I extend my arms out the tingling goes down my arms and engulfs my entire limb.  My feet feel like leather on the bottom.  Even though they have a numb feeling, they hurt as well and are sensitive to touch.  I am sore from my incisions where I was just cut open 3 days ago.  I am still tired all the time and can't believe that 9 months after finding the tumor in my colon and going through two surgeries, the Dr is talking to me about cutting me open AGAIN and going through chemo AGAIN.  My son is almost 2 and I have spent over a quarter of his life consumed by this awful cancer.  It has taken over my life and kept me in bed, filled my thoughts and consumed my time.  It is taking away from what I can offer my children, and this nightmare is not anywhere close to being over. 

Post op

I got home about 11:00 today. It was worth it to stay overnight because I got to talk to my colon surgeon, gyn oncologist and my medical oncologist all separately this morning.  Unfortunately they seem to have some differing of opinions.  My medical oncologist wants to wait to make any decisions on further treatments until the official pathology report comes back which can take up to 10 days.  Unfortunately he did talk about some more chemo treatments.  One of the options he talked about is giving my abdomenal cavity a hot chemo bath.  It is pretty much what it sounds like, they cut you open and pour chemo Inside.  That scares the heck out of me!  Can't imagine the side effects!  So let's just hope and pray for the cancer to have only been one place on the one ovary! It is not good that it actually grew during chemo!

He also doesn't necessarily see the ovaries having cancer as ruling out radiation like my dr in NYC did.  However the colon surgeon was VERY against radiation just like the NYC dr.  One thing my oncologist did agree on was to wait to operate on the lung! I was happy to hear that.

  On another note I am feelin ok.  I am up and moving around and have the pain under control from the incisions, all 5 of them!  One thing that is not under control is the pain from being pumped full of Air for the surgery.  No pain meds take away that pain so it is all on my positions and it can be hard to lay down or sit or stand at times.

 So once again the fate of the next few months of my life remains on hold.  Thanks for all the prayers and positive energy for a successful surgery!  I believe the prayers of patience are helping, I'm getting pretty good at waiting!

Surgery update

Leah is staying the night at the hospital since the surgery was later in the day.  The preliminary pathology showed that it was metastasized colon cancer on/in her left ovary.  Although this was not the news we wanted to hear today, there are several positivies: the ovary and surrounding ovarian cysts were removed without difficulty or complications, there were no signs of cancer anywhere else in her abdomen, and her colon looked "pristine."  Leah should be going home tomorrow.

Leah's surgery today

Quick update from the hospital...Leah's surgery went well, no complications. She is in recovery and Bryan is with her now. She may go home later tonight or may spend the night, depending on how she is feeling. Thanks for everyone's thoughts and prayers, please keep them coming :) Love,

Cousin/sister Rachael

Faith

"Now faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1

chemo brain

I tried to find a good definition of chemo brain for you all to explain what it is, but couldn't find anything I liked.  If you haven't heard of it, it's something that anyone who has been through chemo can identify with.  It's very similar to having "mommy brain" after the stress and shock of having a baby and living off of no sleep.  I believe for cancer survivors it's the lack of brain cells after chemo and the excuse for forgetting things or having moments of complete confusion.  Now I'm sure the fact of actually having cancer stresses one out and is also a factor in this.  Anyway, I have had plenty of moments where I have claimed chemo brain in the past few months and I'm sticking to the fact that it's a real thing!  I won't embarrass myself too much here, but repeating the same thing to someone moments after I've told them something or completely forgetting a lunch date with a good friend are a few things I've done recently and I am not proud of. 

I think I'm pretty lucky if the only side effects i'm still experiencing from chemo are lack of brain cells and neuropathy.  I have been running and done up to 3 miles several days a week and feel fantastic afterward!  Although facing surgery isn't something i'm excited about, I now understand why they had me wait 6 weeks after chemo, because i'm strong now and I feel like I can handle it. 

I had a bit of a revelation today while at my drs appointment.  Perhaps I can blame chemo brain for this not occurring to me until now.  The gyn onc was reviewing the consent form and all the possible things that could go wrong during surgery.  This didn't really phase me as I know the risks from last time and I can't focus on them or give them much thought or I'll drive myself crazy.  Meanwhile I'm continuing to stay focused on the fact that the Dr just told me I can't eat the day before surgery or the day of.  I went 6 days last time without eating so I am sitting there telling myself this should be no big deal but yet dreading those 2 days of no food.   I looked over at my mom and could just read the look on her face as complete fear and compassion.  She on the other hand is not able to stop thinking about the risk factors of surgery on her only daughter.   She is constantly telling me how strong I am and how she doesn't know how I can remain so strong through everything I've been through.  Until Today I hadn't given too much thought about being in her position because it's too painful.  To imagine one of my children going through what I'm going through and to not be able to to take away their pain or fears is just unimaginable.  So I think of all people, myself included, she has the toughest job.  At a support group I go to we were discussing how you can never really "let go" of your kids, you are always going to be worrying about them and thinking about them no matter how old they are.  I don't think anyone can really understand this unless they are a mother or father.  So anyway, I figured it appropriate with mothers day around the corner to give credit to all the mothers out there who have had to go through what my mom has gone through, you are amazing and incredibly strong!

oophorectomy date!

So the surgery i'm having done is called an oophorectomy (removal of one or both ovaries).  It is scheduled for 11:30 am on Tuesday May 14.  My blood work all came back normal for tumor markers but this doesn't necessarily mean anything since my tumor markers were never elevated with the tumor in my colon.  But still good news to not have them elevated obviously.

So please pray for a successful surgery and that they only will be making tiny incisions and I can go home same day! 

why I hate percentages

More than 90 percent of people with colon cancer are over age 50.  The average age of diagnosis is 72.  It is also more likely to occur in men than women.  No wonder one of my friends keeps calling it the "old man cancer".  The chances of someone getting colon cancer are 5.1% and even less in women.  The risk factors are:

A sedentary lifestyle.

Diabetes.

Obesity.

Smoking.

Alcohol usage.

Older age.

African-American race.

A personal history of colorectal cancer or polyps.

Inflammatory intestinal conditions.

Inherited syndromes that increase colon cancer risk.

Family history of colon cancer and colon polyps.

Low-fiber, high-fat diet.  

I am 32, I'm not overweight, I am a runner, have never smoked one cigarette and can probably count the amount of alcoholic drinks i've had on one hand.  The only factor that applies to me above is that my grandfather had colon cancer in his 70s.  I would say it's fair to say my chances of getting colon cancer at my age were about 1-2%.  Since  I'm a young woman and only 1 risk factor applies and that would still only indicate that I would get the cancer at a later age.  However it appears the chances were really 100% because as one Dr put it, you either 100% have cancer or you 0% don't.  Therefore Drs telling me things like "there is a 10% chance that what is on your ovary is cancer" doesn't even make any sense.  It is either 100% cancer on my ovary or it's 0%. 
Part of the reason I am teetering on a stage 4 diagnosis is because of Drs believing percentages and statistics and not acting faster and considering that I could have cancer when I told them my symptoms.  If at my first symptom the Dr had listened to me and not said, "if you weren't pregnant I might be more concerned but I'm sure it's just hemorrhoids" then I wouldn't be wondering if it had spread elsewhere because we would have caught it at it's early stages and it wouldn't have penetrated the colon wall or my peritoneum.     

So that is why I officially hate hearing percentages! They mean nothing to me anymore and I'm not going to let them run my life and taunt my dreams at night and my thoughts all day long. 

gynecological oncologist

I had my gynecological oncologist appointment today.  She was a little more optomistic about it not being cancer on my ovary but also very concerned.  It sounds to me like my oncologist just read off the radiologist report when he told me that it was the cystadenofibroma.  This Dr. said that cystadenofibromas don't grow as fast as my mass did, she doesn't think it is that.  She definitely wants to take out the left ovary but also the right one.  She is concerned about the increase risk of cysts or cancer occurring on the right one and having to go in at a later date and taking that one.  Unfortunately that will send me into early menopause.  They will keep the uterus as long as it looks ok when they go in there.  I will be put on hormone replacements so that I will still get periods (bummer!)
  She ordered blood work to test ovarian cancer tumor markers and my colon tumor markers.  My colon tumor markers were never elevated even with my big tumor so I'm not sure how helpful they will be for the ovarian but lets hope they are not elevated!
  It sounds like if everything goes well with the surgery it is an outpatient laproscopic procedure and I woud go home the same day.  Some potential complications are the fact that i have a lot of scar tissue in the area they are operating on from my first surgery.  My colon surgeon is actually going to be there for this surgery in case he needs to step in for anything.  If there are bigger incisions that need to be made than planned I would be in the hospital a few days to let those heal. 
  I have an apt with the gyn onc next Thursday to go over everything again and then hopefully surgery the following week but no surgery date yet.  So at least everyone is in agreement that the ovaries come out first and we will wait to deal with the lung until after, then discuss radiation.  One step at a time!!