Well, we have been busy, busy! So many phone calls, tests & appointments. I have to give credit to my sweet husband. I would be lost without him. He quickly not only became my emotional support system, but my medical advocate as well. He took charge of contacting insurance for approvals & researching for 2nd opinions as well as keeping our household running. He is amazing!
Since I didn't update here while things were happening, I'll give a brief rundown on what happened & where we are today:
April 12th-PET/CT scan
Great news! The scans show that the cancer has not spread!
April 14th-EUS (endoscopic ultrasound) with Dr. Lee at UCI
He says that the tumor is small, but it is touching the external & internal sphincters & appears to be in one local lymph node. He stages me a T3, N1, M0.
April 15th-Meet with Dr. Fong in Mission Viejo to discuss chemotherapy. I will have a port put in my chest so that they can give me chemo through an IV that will be connected to a fanny pack that I will wear 24/7 for 5-1/2 weeks. He says that side effects of the chemo should be fairly mild. He is also the first person throughout this process so far who is very positive & encouraging. I love him already! He tells me that I will beat this & have a future with my family. I so needed to hear this!
April 18th- (morning) Meet with Dr. Evans again & she goes over the results of the EUS & the PET/CT scan. We also discuss the surgery to put the port in. And we talk about 2nd opinions again. It looks like we will be trying to get approval for a 2nd opinion at the Mayo Clinic in Scottsdale, AZ first, or then possible at Sloan-Kettering in NY. Chad starts the fight with our medical group & insurance over this. He is relentless & never gives up. Again-I don't know what I would do without him.
(afternoon) Meet with Dr. Young to discuss radiation. She's very nice & we like her a lot. She takes a long time going over everything with us. I'm not going to lie, I leave that appointment pretty sad & depressed. I'll spare you the gory details, but just know that the side effects & the possible long term effects of radiation sound horrific.
April 20th-Back to Dr. Young's office to do the initial scans & tattoos (yes, tattoos, not a butterfly or anything fancy, just 3 tiny dots) so they can make a plan for radiation. I am tentatively set to start treatment on May 2nd.
April 21st-I go in for genetic counseling. Since I am so young (as I am repeatedly reminded of every time someone finds out I have cancer) they want to do genetic testing on me. Although we don't have a history of colorectal cancer in my family, they still want to test for it. I guess sometimes it can randomly appear. And we have to know for the sake of our children. The good news is, that if they get colonoscopies at a younger age, anything that may come up will be caught very early & never amount to anything major.
April 28th-(morning) I have the surgery to put the porta catheter in my chest. This will be good because now they can give medicines or draw blood through the port instead of poking my arm every time. It's an outpatient surgery, but as we have quickly discovered, I don't handle anesthesia very well. Even when they give me anti-nausea meds before surgery. Good times! Anyway, the pain from the port isn't horrible, I'm just wiped out.
(afternoon) We go to UCI to meet with Dr. Pigazzi for a 2nd opinion. Now, remember I am supposed to start chemo/radiation in 4 days. We didn't really think much would come from this meeting with Dr. Pigazzi. We were planning on attempting treatment in another state if necessary. But Dr. Pigazzi informs us that I would be a good candidate for a clinical trial that they are conducting for rectal cancer treatment. And the trial is actually sponsored by Sloan-Kettering & being held at a few hospitals around the nation. Well, that snaps me out of my post-surgery fog pretty quickly! He offers us this glimmer of hope that we had been praying for! There is a lot of information to cover & we're not sure if our insurance will approve it, but we tell him "sign us up!"
So basically how this clinical trial works is that you are given 5-1/2 weeks of chemo/radiation followed by 12 weeks of chemo only. The trial randomly chooses which treatment you are given first, but you still will receive both. Then they reassess you to see how your tumor reacted. If there is no trace of the tumor then they will not perform surgery. You are then closely monitored every 3 months for the next 3-5 years. They have been very successful in treating rectal cancer this way so we are optimistic.
And I have to say, we are immediately impressed with UCI. With the facility & the people who work there. Everyone is very nice & helpful. Everything is modern & clean. Dr. Pigazzi definitely seems more knowledgeable in current practices. He spends a long time with us, giving us a lot of information & answering all of our questions. He says if it were him, he would do this trial. We feel very comfortable being treated at UCI & grateful that we did go there for a 2nd opinion. The next day we call Dr. Evans, Dr. Fong & Dr. Young & tell them that we are going to put a hold on starting treatment because of the clinical trial. All of them are very understanding of our decision & tell us we are doing the right thing. Now we just need to work with our insurance...
Saturday, April 30, 2016
Tuesday, April 5, 2016
What now?
We met with Dr. Evans on April 5th.
She again went over her surprise of the biopsy results. She explained that in the rectum you typically find squamous carcinoma. And that adenocarcinoma is typically found in the colon. She actually said she's never seen adenocarcinoma in the rectum, but she also said that she hasn't seen it all. Due to her surprise of the biopsy results she is sending out the slides for a 2nd opinion. She is also referring me for a 2nd opinion with a rectal surgeon at UCI.
She explained that the difference between the two cancers is basically in how they are treated. With squamous carcinoma you receive chemo & radiation & she said the cancer cells "melt away." With adenocarcinoma you are also given chemo & radiation but then surgery will be performed as well. So we are praying that there is some miracle that the initial biopsy results are wrong & that this is only squamous carcinoma & not the adenocarcinoma.
Dr. Evans also reassured us that this is treatable & that I am going to be ok. I'm trying to stay positive with the fact that this isn't a death sentence, that I will be able to watch my girls grow up. Even though the road we are about to go down is scary & unsure right now, I am holding on to faith & hope that I will be ok.
She also referred me for a PET/CT scan, an endoanal ultrasound, to meet with a medical oncologist, a radiation oncologist & for genetic counseling/testing. Yep, it just got real.
She again went over her surprise of the biopsy results. She explained that in the rectum you typically find squamous carcinoma. And that adenocarcinoma is typically found in the colon. She actually said she's never seen adenocarcinoma in the rectum, but she also said that she hasn't seen it all. Due to her surprise of the biopsy results she is sending out the slides for a 2nd opinion. She is also referring me for a 2nd opinion with a rectal surgeon at UCI.
She explained that the difference between the two cancers is basically in how they are treated. With squamous carcinoma you receive chemo & radiation & she said the cancer cells "melt away." With adenocarcinoma you are also given chemo & radiation but then surgery will be performed as well. So we are praying that there is some miracle that the initial biopsy results are wrong & that this is only squamous carcinoma & not the adenocarcinoma.
Dr. Evans also reassured us that this is treatable & that I am going to be ok. I'm trying to stay positive with the fact that this isn't a death sentence, that I will be able to watch my girls grow up. Even though the road we are about to go down is scary & unsure right now, I am holding on to faith & hope that I will be ok.
She also referred me for a PET/CT scan, an endoanal ultrasound, to meet with a medical oncologist, a radiation oncologist & for genetic counseling/testing. Yep, it just got real.
Monday, April 4, 2016
It is cancer.
On Monday, April 4, 2016, Chad, Quinn & I were just leaving Home Depot when Dr. Evans called with the results of my biopsy. She said that the results surprised her, they weren't what she expected.
Ok, is this good? Is this bad?
She said that the biopsy came back as "adenocarcinoma."
"It is cancer."
She said when she removed a portion for biopsy she knew that it was cancer, but the biopsy results surprised her because usually it is squamous carcinoma in the rectum & that's what she thought it felt like. She said that adenocarcinoma is usually found in the colon & she's actually never seen it herself in the rectum. Great. Of course the word "cancer" is so scary to hear to begin with, but now she's saying it's not common in the area where mine is.
She said that the treatment is chemo, radiation & surgery. And that we would discuss everything more at my post-op appointment the next day.
And just like that, our world stopped & a whirlwind of emotions began...
Ok, is this good? Is this bad?
She said that the biopsy came back as "adenocarcinoma."
"It is cancer."
She said when she removed a portion for biopsy she knew that it was cancer, but the biopsy results surprised her because usually it is squamous carcinoma in the rectum & that's what she thought it felt like. She said that adenocarcinoma is usually found in the colon & she's actually never seen it herself in the rectum. Great. Of course the word "cancer" is so scary to hear to begin with, but now she's saying it's not common in the area where mine is.
She said that the treatment is chemo, radiation & surgery. And that we would discuss everything more at my post-op appointment the next day.
And just like that, our world stopped & a whirlwind of emotions began...
How did you know something was wrong?
I figured I should address this question because we have been asked this quite a bit. Sorry if there is a little too much information in this post. Unfortunately the area where my cancer is lends itself to some awkward or uncomfortable language. But, that's just how it goes.
Let me start by saying that I have had hemorrhoids since I had Aidynn. They bother me off & on, but really have never been a big problem. This past summer I started to have some pain after going poop. (I will say poop, it's what we say around here & sounds less formal than "bowel movement.") It didn't happen every time I went poop, just occasionally. And it wasn't bad pain, just a mild pain. I didn't have any trouble going poop, I am very regular that way, but the pain would come anywhere from 5-45 minutes after I had gone to the bathroom. (TMI? Sorry, not sorry.) I honestly just thought it was my hemorrhoids acting up again. Then it wouldn't happen for a couple of weeks. Well, by the fall it was happening more frequently. And by November it was happening often enough & getting more painful enough to where I called my doctor for an appointment.
I went to my general practitioner on December 1, 2015. I explained what had been going on. She did a digital exam (yes, that means finger exam up my butt) & she said she could feel an internal hemorrhoid. She said since it's internal she was referring me to the gastroenterologist.
I met with Dr. Weinberg, the gastroenterologist, in January (yes, the medical referrals & scheduling appointments take forever, it's very frustrating). He also did an exam & determined that the location of my pain was a small, hard mass that is in the spot where internal hemorrhoids are usually found, but it felt harder than a hemorrhoid feels. So he set me up for a colonoscopy.
I had the colonoscopy on January 29th. The prep really stinks, but the actual procedure was no big deal. And the report from that seemed good. My colon was clear. No tumors or polyps found. That was great news! There was only the spot in my rectum, right before my anus (are the words making you uncomfortable yet?) that looked abnormal. So he biopsied the area. And the results from his biopsy came back saying that it was scar tissue. Ok, that seemed strange...scar tissue in my butt? So he referred me to a rectal surgeon for further investigation.
We finally met with Dr. Nora Evans, the rectal surgeon, on February 22nd. By now my symptoms had gotten a lot worse. I was now uncomfortable a lot of the time when sitting & the pain was getting worse. I was ready for this surgeon to say she was just going to go in there, cut off this mass & then I could go about my life. She, however, had other plans. Dr. Evans told us that the biopsy that Dr. Weinberg had done was no good. It was inconclusive. So she told us she would have to do her own biopsy. The soonest we could get that scheduled was for March 23rd. Have I mentioned how frustrating it is to have to wait so long for referrals to be approved & appointments to be scheduled? Especially when you're dealing with pain every day.
So on March 23rd I went in for the "surgery." Now, nobody prepared me for this surgery. The doctor had made it seem like no big deal, a simple outpatient procedure. The procedure itself wasn't bad, they knocked me out. But when I woke up I was so nauseous & in a lot of pain & then started to throw up. It was horrible! Finally the anti-nausea & pain meds started working & I was able to go home. I'll spare you all of the gory details, but the recovery was not fun. It was at least a week before I even left the house. I was not prepared for that at all. I really wish the doctor had gone over the procedure a little bit more thoroughly with me. I had just assumed it would be easy like the biopsy during the colonoscopy. Lesson learned for me too-always ask the details even if you think you know what will be happening.
And on top of being in pain during recovery, we were told it would take 7-10 business days to get the biopsy results back. Let the waiting game begin...
Let me start by saying that I have had hemorrhoids since I had Aidynn. They bother me off & on, but really have never been a big problem. This past summer I started to have some pain after going poop. (I will say poop, it's what we say around here & sounds less formal than "bowel movement.") It didn't happen every time I went poop, just occasionally. And it wasn't bad pain, just a mild pain. I didn't have any trouble going poop, I am very regular that way, but the pain would come anywhere from 5-45 minutes after I had gone to the bathroom. (TMI? Sorry, not sorry.) I honestly just thought it was my hemorrhoids acting up again. Then it wouldn't happen for a couple of weeks. Well, by the fall it was happening more frequently. And by November it was happening often enough & getting more painful enough to where I called my doctor for an appointment.
I went to my general practitioner on December 1, 2015. I explained what had been going on. She did a digital exam (yes, that means finger exam up my butt) & she said she could feel an internal hemorrhoid. She said since it's internal she was referring me to the gastroenterologist.
I met with Dr. Weinberg, the gastroenterologist, in January (yes, the medical referrals & scheduling appointments take forever, it's very frustrating). He also did an exam & determined that the location of my pain was a small, hard mass that is in the spot where internal hemorrhoids are usually found, but it felt harder than a hemorrhoid feels. So he set me up for a colonoscopy.
I had the colonoscopy on January 29th. The prep really stinks, but the actual procedure was no big deal. And the report from that seemed good. My colon was clear. No tumors or polyps found. That was great news! There was only the spot in my rectum, right before my anus (are the words making you uncomfortable yet?) that looked abnormal. So he biopsied the area. And the results from his biopsy came back saying that it was scar tissue. Ok, that seemed strange...scar tissue in my butt? So he referred me to a rectal surgeon for further investigation.
We finally met with Dr. Nora Evans, the rectal surgeon, on February 22nd. By now my symptoms had gotten a lot worse. I was now uncomfortable a lot of the time when sitting & the pain was getting worse. I was ready for this surgeon to say she was just going to go in there, cut off this mass & then I could go about my life. She, however, had other plans. Dr. Evans told us that the biopsy that Dr. Weinberg had done was no good. It was inconclusive. So she told us she would have to do her own biopsy. The soonest we could get that scheduled was for March 23rd. Have I mentioned how frustrating it is to have to wait so long for referrals to be approved & appointments to be scheduled? Especially when you're dealing with pain every day.
So on March 23rd I went in for the "surgery." Now, nobody prepared me for this surgery. The doctor had made it seem like no big deal, a simple outpatient procedure. The procedure itself wasn't bad, they knocked me out. But when I woke up I was so nauseous & in a lot of pain & then started to throw up. It was horrible! Finally the anti-nausea & pain meds started working & I was able to go home. I'll spare you all of the gory details, but the recovery was not fun. It was at least a week before I even left the house. I was not prepared for that at all. I really wish the doctor had gone over the procedure a little bit more thoroughly with me. I had just assumed it would be easy like the biopsy during the colonoscopy. Lesson learned for me too-always ask the details even if you think you know what will be happening.
And on top of being in pain during recovery, we were told it would take 7-10 business days to get the biopsy results back. Let the waiting game begin...
Through Faith & Hope
I (Julie) have just been diagnosed with rectal cancer. We have decided to start this blog to have a place where our family & friends can come to read the most current updates. It is just very hard (both time consuming & emotionally) to update everyone individually. And this will be a place for us to document this journey we have started. Sometimes Chad will update & sometimes it will be me. At this point, all I can say is that I am overwhelmed by the calls, texts, gifts, treats, love, prayers, & thoughts that we have received. There is no way I can ever thank you enough for your support. And we love you all too! We are just trying to stay positive & we know that the only way our family will get through this is with faith & hope.
XOXO
XOXO
Subscribe to:
Comments (Atom)