CSN Login
Members Online: 17

New guy

tpmack37's picture
tpmack37
Posts: 14
Joined: Apr 2010

Hello - New guy here. Diagnosed Feb 15 with rectal cancer and told It would be taken out as I was waking up from Colonoscopy / Biopsy. RE-Diagnosed the next morning with Anal Cancer. The doc really thought it was a rectal tumor growing down into the anus, "but I was wrong" he says: "it's anal tumor growing up into the rectum!"
I said - is that good?
he said - I won't be doing surgery - we'll kill it with radiation and chemo!
While this was all sinking in I was also getting strange fevers, so I prodded him on the other tests.
I said - hey - how does that catscan look? could I have some sort of sinus infection?
He phones back - Tim, I made some time for you tomorrow morning! Bring in your wife!
(I did not realize that "made you some time" and "bring your wife" are phrases I should have been scared of.)
The next morning my wife and I are looking a a cat scan of someone's liver which is absolutely covered with tumors. He explains that it is me, and that we can't kill those tumors the way we can kill the anal tumor, but we can keep trying to shrink them and get you some time. (wife is crying, I'm trying to comfort) I'm asking what does it mean - 3 months? 3 weeks? a year? Doc dodges those things but stays very sympathetic as he sends me down to the cancer center. (I still like that doc and think he's a good man)
I get settled into the cancer Center and fast forward - finished treatment yesterday. I've got loads of pain and bathroom issues like you guys, but before I start my public griping ;) I thought I would give you some background. TIM

z's picture
z
Posts: 1251
Joined: May 2009

Hi Tim,

I'm so sorry you have to be here. Now that you've finished the tx for the anal cancer, I'm sure you will now continue on to fight the liver mets. I know they have many chemos to shrink the liver mets, and then they have other tx to remove them. I bounce back and forth to the correctol board, and there are many colon cancer survivors with liver mets. They have been treated for the liver mets and are doing well. Theres a couple of anal cancer patients on this site that have liver mets. One had a liver resection, and one has completed a totally different form of radiation to zap the liver met. I'm sure they'll chime in. I had Stage II anal verge cancer NOMO, and completed treatment 6-30-09. I'm sure your treatment will have gotten rid of your anal cancer. I know it took me a couple months to heal up pretty well. I also use the rare cancer alliance web site. There are many anal cancer survivors there and some with liver mets. One in particular is doing great and shows NED anywhere after receiving treatment. If you google the site and register, it takes about 24 hours to get a log in. Keep us posted. I wish you well. Lori

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

Hi Tim,
Welcome to the board, but sorry you need the board in the first place. There are people who survive this with liver mets. Most important first questions - ask your doctor how many cases of anal cancer he has treated. Initially I was diagonosed as rectal but I went to MD Anderson Cancer Center and was re-diagonosed and treated for anal. If your doctor hasn't seen or treated much of this, I strongly recommend second opinions. This is a rare cancer. What state are you in?

This is going to be fight like no other, and as hard as it is, try not to focus on 3 months, 3 years, etc. Try to focus on getting rid of those liver mets! As Z said in her reply, the original anal cancer site will most likely be taken care of with the treatment. The challenge will be the best course of treatment for the liver mets. If you want I can sent you my oncolonogist name, she is a promininent anal cancer oncologist who treats a few cases a week of this type whereas some others only see 2 cases or so in their careers.

We'll be here for you. Your in my prayers.
Liz

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

I'm so sorry that your circumstances have brought you to this forum and that you are not only dealing with the anal cancer, but also liver mets. I will cut to the chase. I know there are a couple of members of this forum who have had liver mets and can give you some very good information. Also, I am a member of another forum and we have a member there who was stage IV anal cancer with mets to the liver. She was treated for the liver mets with Carbo, Taxol and Xeloda and is now doing very well. She is someone who is most willing to share her experience/knowledge with anyone in this same situation. If you would like to communicate with her, I urge you to become a member of Rare Cancer Alliance (just google) on the anal cancer forum. I am also known as mp327 there, so you can contact me and I will give you her user name so that you can get in touch with her privately if you wish. I know your news is discouraging, but as others have said, there are many who are being successfully treated for liver mets, so I encourage you to do as much research as possible, get second or third opinions, check into clinical trials, etc. I hope to see you soon on RCA and I will keep you in my thoughts and prayers.

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

I was dx'd with a liver met in Nov. 09. It was 1.4cm X 1.6 cm and laying all over the main artery and ventrical. Resection was not an option. I completed 5 radiation treatments last month. I was treated at Moffitt Cancer Center in Tampa. They used a machine called Triology; administering stereotactic radiation to the liver. I will have a PET and CT this Monday to see how effective it was. I am praying for EXTREMELY!!! Please heed the advice of the others who have posted, breathe, get your head on straight and get as many opinions as you feel necessary to find a level of confidence about your treatment. Please feel free to PM me if you feel the need.

z's picture
z
Posts: 1251
Joined: May 2009

I am praying for a clear pet-ct this Monday. I have been thinking about you, and I am glad to see your post. There are positive prays coming your way. I wish you the best.
Lori

cbs6931's picture
cbs6931
Posts: 63
Joined: Mar 2010

For a very good report tomorrow!

Cathy

cbs6931's picture
cbs6931
Posts: 63
Joined: Mar 2010

I'm no expert by any means, but I insisted on a PET scan up front and got both a PET and CAT. One friend had anal cancer that had supposedly spread to his liver, they were getting ready to do a resection and did a PET scan at the last minute only to find out the tumors were not active, hence no resection needed. He told me that a CAT scan cannot show whether a tumor is active or not, but a PET scan can. I'd ask your Dr about this, or someone else on the board may have more information or experience with this.

Thoughts and prayers coming your way,

Cathy

tpmack37's picture
tpmack37
Posts: 14
Joined: Apr 2010

Yes. After at least one Cat Scan, which showed all the stuff I described, plus a bunch of strange marks? Spots? things? on my lungs. When it got to the point of making a plan with a chemo and a radiation doc, one of them insisted on a PET scan.

At first, all I got back was an oral summary - The anal tumor, the many many lesions on my liver were cancerous, the spots on the lungs were not.

But stories like yours, and one from one of my sisters made me ask to see the PET scan first hand.

So I have actually looked at the thing and seen it first hand. Thanks God for the technology!

Thanks! TIM

winnipeg
Posts: 24
Joined: Apr 2010

I was diagnosed in Feb 2008 by CT scan and biopsies. I had countless liver mets, a normal small anal tumor, and a big weird extension into my rectum that seemed like a golfball in my rectum, a few cm up from my anus. Some called it a cyst...it was cancerous, but not a tumor. I had no node involvement at all, even after biopsies of my rectal nodes...all of them. My case was a lot like Tim's. I wonder, Tim, how were your lymph nodes at diagnosis?

I was given, for 7 months, Taxol, Carboplatin, and Xeloda. The treatment was based on a study from Tennessee by JD Hainsworth et al.

A few DAYS after the first chemo, my anal pain, itching, and swelling were gone. By a month or so, the rectal ball and the anal tumor ware just GONE. By June of 2008 my liver had stopped changing on the CT scans and in September 2008, my PET-CT was clear for liver liver mets.

I underwent Nigro (the 6 weeks of radiation, mito and 5-fu like most folks get) for the heck of it at the end of 2008. By the end of the my CT scans said NED all over my body.

In March of 2009 my PET-CT was still showing no active disease in my liver, more than a year after diagnosis.

I underwent a liver exploration in March 2009 which was exhaustive and found no cancer.

Sadly, the 3/2008 PET-CT showed my rectum still had a glow where the golfball had been...biopsy proved disease, so out with my bum. No biggie, totally used to ostomy, and very willing to counsel anyone who is dreading it. It's horrid at first, but you can deal!

I have since had CT scans (Sept 2009, and March 2010) and am still considered free of disease.

Again, I had Carboplatin, Taxol (Paclitaxel) and Xeloda (oral 5-FU) for about 7 months, at three week intervals...it cleared out my liver and I am still doing fine.

My doctor was William Stanton III, in San Diego, practicing at Scripps Mercy in Hillcrest area.

Please, anyone who is worried about your liver mets, have your doctor call Dr Stanton or find the Hainsworth studies. Hainsworth only gave 4 administrations of chemo in the study. I got 7 or 8.

Winnipeg of Los Angeles

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

Thanks for sharing so much information about your case with all of us, specifically Tim!

tpmack37's picture
tpmack37
Posts: 14
Joined: Apr 2010

I heard about your case and it is strangely similar.

I also had no action at all with the lymph nodes; just the anal tumor (which was growing up into the rectum. At one point, one of the docs did describe it as strange, I wish I remembered what he said, like a vine or something).

[EDIT - oh yeah, for weeks and weeks no one ever talked about staging and said don't worry about it etc..but finally out of sheer curiosity, I pinned down my doc on the subject. She said - Stage 4; she said any cancer that jumped to another organ is stage 4 automatically]

I just finished the 6-week plan of radiation (28 days) and 2 rounds of chemo Mytamyacin(SP?);and 5FU through a pump for 5 days. Before they went in, they pumped in some steroid and some anti-nausea stuff.

I think I'm unlike many cases in that I didn't get killer diarrhea, but sort of the opposite. apparently the radiation turned my stools into very hard, round or rock-shaped....ummm Rocks! They have been the bane of my existence! Constant pain, too big to come out easily. Lots of pain, blood etc. If anyone knows anything about this, send them my way!

So, back to topic - I'm glad to meet you Winnie. Especially since the person who showed me my liver, basically patted me on the shoulder and said this was incurable, but we'll try to shrink them down and buy you some time. I'm much more hopeful having read your story and I will be taking your note to my chemo doc tomorrow.

Thanks! and thanks everyone - I'm happy to see all the postings!

mtnmama
Posts: 10
Joined: Apr 2010

I am assuming you are from Winnipeg, Manitoba and now live in LA, I am from Winnipeg and now live in socal, I was diagnosed at UCLA (just love Dr. Dorigo, obgyn onc and also the GI's there who found my stage 3 after months of complaining to my doc about rectal pain and other issues. I had lymph involvement on my right side and also uterine involvement. My thoughts and prayers are with you and also tpmack37 ..keep us posted

winnipeg
Posts: 24
Joined: Apr 2010

My mom's from Winnipeg. I was raised down here mostly. When did you come to the US to live, MTNMAMA?

Constipation:
What ever is in Pedigree Puppy formula un-constipated my dog very effectively. I now mix half regular Pedigree with half Puppy Chow. There must be a special ingredient or the absence of one that makes the difference. I don't have the puppy chow bag, alas.

Colace in my view is a mixed blessing. It wets the stool but seems to expand it and make it a vile force of nature that still causes problems on the way out.

I like Senokot.

Many of us had to run to the bathroom after eating lettuce; sort of like an instant enema. You might try a salad with oil and vinegar.

I get rocks and pebbles when I subsist on Vanilla Swiss Almond ice cream for a few days. It's embarrassing on both counts (the symptoms, the behavior) but since we are all here to help, it has to be discussed, right?

mtnmama
Posts: 10
Joined: Apr 2010

came down in 2000, live up in big bear, God's country, so had to go down the mountain to ucla several times for initial diagnosis and the the desert every day for chemorad but well worth the trip, met my hubby online and the rest as they say is history :-)

lemonade
Posts: 62
Joined: Feb 2010

I didn't have a lot of diarrhea either. I took 2 OTC stool softeners every night during treatment and afterwards for a while. The pain meds would make me constipated. You might want to try some Benefiber or Metamucil. The Benefiber didn't glob up in the glass and I drank it with orange juice.

Barbara

steve714's picture
steve714
Posts: 15
Joined: Feb 2010

Sorry to hear of all your health issues. This is a great place for support and info.The folks in here are all angles!I have retal cancer and went through chemo last month and did not do very well. Messed up my mouth bad. Am restarting rad and have 23 sessions to go.Im scared but hopeful thanks to this web site. Am thing I can do to help just ask! Steve

winnipeg
Posts: 24
Joined: Apr 2010

Tim,

I hope you can call either Dr. JD Hainsworth in Tennessee or Dr. William Stanton III in San Diego tomorrow or soon as you can. I had the miracle we all dream of, a full remission. It was achieved with Carboplatin, Paclitaxel, and Xeloda, however, NOT with what everyone else gets. My clean liver has stayed that way since about June 2008. I did have the radiation and chemo you had, as mop-up, but it achieved nothing in my case. The before and after PET-CTs showed disease of the same dimensions in my rectum both times. I ended up needing a colostomy to get the last bit of cancer out of my rectum. I wish they'd allowed me to stay on the first 3 chemo agents longer, but a new doctor insisted I go off it and get radiation and the chemo pump instead. C'est la vie.

So, I think you could be headed where I was, to Taxol etc. If there is ANY need for additional treatment, just know that I did it, and it wasn't all that bad, but I did lose all my hair and was sort of tired. I kept going to my full-time job, though, and no one was the wiser. I only threw up once and I think it was what I ate, not the chemo.

I am here to help in any way. Please PM me on the rare cancer forum where Martha told me about you, or reach me through the CSN member's directory here if you want to!

Winnie

tpmack37's picture
tpmack37
Posts: 14
Joined: Apr 2010

At the moment, my plan is to see my doc today and show her the info you've put out here. I think she'll be interested and open minded.

Thanks again!

TIM

winnipeg
Posts: 24
Joined: Apr 2010

My wish...

that EVERYONE who's Stage 4 or very worried should print and save this. I know my case is just a single piece of data, but so would it be if you saw a squirrel dance a jig. Who cares if it's only happened once so far? If it's happened before, it can happen again.

I got Carboplatin, Paclitaxel, and Xeloda for almost 8 months at 3 week intervals. My liver's been clean as a whistle ever since. Of course it ain't over 'til it's over, but in my case I have far outlasted anyone's expectations, and Hainsworth's results are impressive. Note that he only administered the treatment four times and got very good results. I had it 7 or 8 times and got a darned good result. It was hard on my platelets mainly. Reds and whites were fine. My whites tanked about 9 months after therapy started, and then I was undergoing the usual Nigro, not the original Carbo/Taxol/Xeloda. I am in 49 and not otherwise unhealthy. Female. Caucasian.

My medical oncologist:

Stanton William M D. Categories: Internal Medicine, Cardiologists. Neighborhood: Hillcrest. 4033 3rd Avenue San Diego, CA 92103. (619) 299-2570

The Hainsworth research he based my treatment on:

http://www.ncbi.nlm.nih.gov/pubmed/11505410

Hainsworth contacts from internet:

250 25th Avenue North
Nashville, TN 37203-1625
(615) 320-5090

Question, Tim. Are you military? You have the greatest spunk, usually only seen in people who think it's a great idea to get up at 5:00am...the military!

Winnie

tpmack37's picture
tpmack37
Posts: 14
Joined: Apr 2010

I appreciate the compliment about having spunk - but I'm not military.

I had the honor of visiting and temporarily living on a military base or two after my mother remarried into the marines. Had some fun times with some marines on Okinawa and mainland Japan. Had a chance to climb Mount Fuji, followed by a night on the town with the US Marines, and the some men from the Japanese Defense Force. (I survived!)

This reminds me I have to write an introductory page!

TIM

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

Please write an introductory page! :)

SueRelays
Posts: 489
Joined: Dec 2009

Hi Tim

I was diagnosed with anal caner in April 2008. Two years ago this month :)!!
Since going through treatment, rad and chemo for that, I've had 1/5 of my lung removed, and now this year, 1/2 of my liver. I'm 51 and never had a doctor til all this! I'm back at work this week, and feel almost NORMAL!!! It is just absolutely amazing what our bodies can go through and come back from. As someone mentioned, there are several stage IV survivors on the colonrectal boards. They encourage me, as I'm only a couple months out. This is the place for support, information and most importantly HOPE!!!

z's picture
z
Posts: 1251
Joined: May 2009

Hi Sue,

It sounds like your doing well. Well enough to go back to work, thats great. Its great that you feel almost normal. I see where you said you didn't have a dr until all this. Me too I had'nt been to the dr since 2001, and the 1st appt. I had was with the gyno on 3-09. I've certainly learned my lesson. Now I preach early prevention. I'm happy your doing so well. Lori

z's picture
z
Posts: 1251
Joined: May 2009

This thread has all 4 survivors on it, where they are talking about their treatments for the liver.

azkookie18
Posts: 22
Joined: Jul 2010

thank you Z for guiding me to some positive stories, further info, and possibly some sleep as well.

azkookie18
Posts: 22
Joined: Jul 2010

Hi Winnipeg,
I am interested in learnign more about your experience and also find out more about your doc in SD.
I can't figure out how to drop you a private message on this board so would you mind please sending me your e-mail address? My mom is in a similar boat that you're were in and I'm considering reaching out to your doc for 2nd opinion.

Thank you in advance.

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

azkookie18--

Winnie hasn't been too active on the boards lately, but I have her doctor's info and am passing it on to you. Winnie and I go back almost 2 years, this is her "miracle" doc.

Dr. William Stanton
4033 3rd. Ave., Suite 300
San Diego, CA. 92103
Phone: (619) 299-2570

I hope this helps you find appropriate and effective treatment for your mother. I'm sorry to hear of her diagnosis and will keep her in my thoughts and prayers.

Martha

Magrao
Posts: 13
Joined: Aug 2011

Hey, Winnipeg, can you please provide a healthy link to Hainsworth's guidelines?

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network