Stage 4 colon cancer with mets to the liver and now anal cancer diagnosis

Houdini71

Hello everyone,

I'm new to this forum and wanted to reach out to anyone with any words of encouragement or just to talk because I'm a mess right now.

Here is a quick rundown on my fight.

I was diagnosed with stage 4 colon cancer in august of 2013 and had a colon resection in October of 2013. In November of 2013 I started my chemo journey which has now been over 40 rounds of chemo all together. I started out on folfox, then switched to folfiri and in march of this year my oncologist wanted to switch me to Stivarga. I've heard and read some pretty bad things about Stivarga and was thankful that finally he mentioned about getting a second opinion. So we said yes we want second opinion and he set me up with the doctors at UCLA and went to meet with them. Keep in mind that this was in march of this year and I met with the drs at UCLA in the beginning of April. The doctors we met with there looked over all my scans to get an idea of how I've done on chemo and they were super impressed with how my liver tumors had responded to the chemo and felt that I could be a candidate for the Y90 procedure or also called therasphere. They first had to take my case to the tumor board for approval and it took about a week to get the news that I was a good candidate.  During this waiting period I started to experience a lot of pain in my anus and it felt like I had hemorrhoids and the last pet scan I had at the end of march when my oncologist suggested the 2nd opinin showed there was some uptake in the rectal/anus area.

So I took it as if it was indeed hemorrhoids and I figured that if it was something to be concerned about my oncologist would have done something to check it out and investigate. I have to add that since starting out with this oncologist I was never happy but my wife insisted we stay with him because she heard really good things about him. Anyhow, from april to june still on no chemo I was finally able to get the first part of the Y90 procedure which is the mapping and then the other 2 steps were done in mid june and at the end of july.

I had to wait about 3 weeks with still no chemo and to get a pet scan and ct scan to see if the Y90 procedure was effective or not. I finally was able to meet with my new oncologist because I didn't like the oncologist I had so it took a bit to get into see the new oncologist. I met with him this past Thursday and he said that there was good news and bad news and the good news is that the procedure did work but that the Y90 procedure is a targeted therapy and only targets the tumors that the procedure is administered to. The bad news is that there was 3 new small spots that showed up and he was going to talk with the doctor that di the Y90 procedure and see what the next step would be.

I mentioned to my new oncologist that I was having a lot of pain in the anal area and thought it could be hemorrhoids and that it was very very painful and also told him that I had an exam with a colorectal surgeon at UCLA the next day (Friday) to see what was going on. My oncologist said that he did see some uptake in that area again on the pet scan and that it was a good idea to have it checked out. So now we leave the cancer center and head down south to UCLA for my exam on Friday and I go to my exam and doctor feels around and says he doesn't like what he feels and is concerned so he wants to get a biopsy. So he sets me up for a biopsy for the following Tuesday after the holiday and I get that done and after the biopsy he said he suspects it's cancer but lets wait for the pathology report.

Now here we are a few days later on Friday and I get a call from his assistant to tell me that it came back positive for cancer and that it said on the report it was moderate differentiated adenocarcinoma which I have no clue what that means and pretty much ruined my weekend with worries and stress because I don't meet with my oncologist until Monday late afternoon. So early today Friday the 9th I had an ultra sound done on a lump that also showed up on the pet scan that my oncologist wanted to check on. I've had this lump right above the incision area where they go into the femoral artery during the Y90 procedure, the lump has been sore and caused some leg soreness but from what the dr at UCLA that did the Y90 procedure said it was normal and not to worry. Now with the bad news I got today about the anal cancer I'm sure that the lump in my groin is related to the anal cancer or cancer related to my colon cancer.

I don't understand how a doctors assistant would call a person on a Friday to give them devastating news to have to deal with over the weekend with no doctor to talk to about what we are going to do etc etc. Now I have to wait until Monday to get any information as to what the plan will be. Now every ache and pain I feel now I feel like the cancer is just spreading. I don't know if it's all in my head or not... Like I said, with the bad news today it's just made me a complete basket case.

Sorry for the long story but Im at a loss as to what to think or feel anymore. I've fought so hard to be strong and fight the cancer in my liver and now I get the news that I'm going to have to add a whole new fight to the one I'm already fighting already. I feel like Im going to lose and there is fight left in me to take on what I've been dealt with today.

I don't know what I'm looing for from this post but I guess if anything maybe someone with a similar story or words of encouragement or anything to help change the dark place I'm in right now.

Thank you all for taking the time to read my story and I hope to hear from anyone and also hope to give back to this forum with the experiences ive gone through dealing with stage 4 cancer.

God Bless you all!!!

Houdini71

mp327

Houdini71

My goodness, I read your story and cannot believe all you have been through.  I am sorry for your past health issues and also the new ones on the horizon.  I can certainly understand your feelings of fear and anxiety about what lies ahead.

I was diagnosed with squamous cell anal cancer in 2008, so my cancer cells were of a different type than yours in the anal area.  It is my understanding that adenocarcinoma of the anus is found in the glands in the lining that surround the anal canal.  The most common type of anal cancer is of the squamous cell type like I had.  

From your post, I gather that you live somewhere in California.  I don't know what your confidence level is with your doctors, including your new oncologist.  I hope that they can give you satisfactory answers to your questions about all of this.  I am only throwing this out to you as an alternative, perhaps to seek a second opinion, but University of California/San Francisco has a dysplasia clinic solely devoted to the treatment of anal diseases, including cancer.  Dr. Michael Berry is one of the physicians there and I had the pleasure of meeting him personally, although he is not one of my doctors.  I met him at a conference at which I spoke last year.  He is quite knowledgeable about anal cancer.   If you are giving any thought to seeking a second opinion, if I were in your shoes, he would be my first choice of a doctor in your area.   I also met Dr. Joel Palefsky at the same event.   You can view both of their profiles by clicking on the "About Us" section of the website that I am pasting in a link to below for your reference.

  http://analcancerinfo.ucsf.edu/

I am truly sorry that you have so much on your plate and I agree that having an assistant call you on a Friday to deliver such news is terrible.  I do hope that you'll get answers on Monday from your doctor as to what happens next.  Further investigation is definitely in order, IMO.  The lump in your groin may be a lymph node that is hot.  My heart goes out to you.  I hope you will keep us posted on what you find out and where you go from here.  Come here any time to update us, vent or get support.  This is a great group of people and we care.  I wish you all the best.

Martha

eihtak

Houdini71......

"Sorry for the long story but Im at a loss as to what to think or feel anymore. I've fought so hard to be strong and fight the cancer in my liver and now I get the news that I'm going to have to add a whole new fight to the one I'm already fighting already. I feel like Im going to lose and there is (no) fight left in me to take on what I've been dealt with today"

Hi,

I can't imagine feeling otherwise, yet the name Houdini may suggest that somehow deep inside you really do have just what you will need to get through this. I think its just awful to get a call such as you did and have no resource for further information over the weekend, I am sorry. It seems that these things happen from time to time and while possibly unintentional bad timing on the medical teams part, we all deserve much better consideration.

My story has some similarity in that when discussed now, it often sounds too unreal to even be true.....

My husband was dx with Multiple Myeloma (a blood cancer) in 2010. His initial Rx was a stem cell transplant. In 2011, I was dx with Stage 3b anal cancer and treated with surgery (ostomy) chemo/rad. Later that year my husbands Myeloma recurred and this time he needed a full bone marrow transplant. As he was recovering (a lengthy process) in 2012, I was dx with a rare breast cancer. This was found on a follow-up PET scan for the anal cancer as it is often undetected until late stage. Rx was a double mastectomy and Arimidex (still taking that). The story continues.....in 2015, while feeling just fine, another follow-up scan revealed a mass the size of a peach in my lung, the biopsy confirmed mets of the anal cancer. Rx this time was a thoracotomy to remove the left lower lobe of my lung followed by an aggressive course of chemo once again. Both of my chemo treatments (each dx) were Cisplatin/5Fu, but the second time was longer and stronger. A month after Rx for the mass in my lung, a large blood clot was found in my right lung, for this I continue on Warfarin.

There were (are) days in which I as well have wondered about my ability to continue the fight.....it is when I feel so defeated, so worn down, so tired of the whole thing and everything that goes along with it, like poorly timed phone calls, (please just take this for what its worth, as we are all different) that right when I feel my weakest, I turn it all over to God and and pray for hope, strength, and encouragement. I have never ever been let down, not ever! I have no idea what tomorrow will bring in my life. I am pretty sure there will be hills to climb, and some may seem out of my reach, but I have a sense that there will always be a hand to grab to pull me up if I just ask. For today, I feel wonderful though and I will celebrate that and be grateful.

My heart aches for you and the place you are in, know that you are not alone, and we are all here to help you through this. For now, know that you are in my thoughts and prayers to find what you need, when you need it......I think you will.

Please stay in touch as you move forward, and know that no question or concern is not worth asking. There is a great deal of support on this site and surely someone will have some helpful tips and advice if needed.

katheryn

 

tanda

Houdini71

your story left me breathless; I don't have a medical background, but I wonder about the recent biopsy.  Might the adenocarcinoma be a metastasis of the colon cancer?  What is most important is getting some more opinions on the pathology slides...comparing the colon cancer slides with the new adenocarcinoma.  When more information is available, I hope you will find a very experienced team that you are comfortable with, to coordinate your care.

I am holding you in my thoughts and  will be following your story.

Tanda

horsepad

I am a stage 4, mets to the

I am a stage 4, mets to the liver, squamous cell anal cancer survivor.  I truly understand the uncertainity you are feeling.  I was so scared when I was diagnosed.  Prayer got me through my fight.  God carried me through the days I didn't feel I could do it on my own.  A constant comfort and faith.   The people on this board will be a good companion to help you with your journey.  I will keep you in my prayers.