proton therapy and colon cancer for the right candidate

Please feel free to read, share your thoughts, your stories and connect with others!

proton therapy and colon cancer for the right candidate

Postby Jennyjump » Tue Jun 14, 2011 8:23 am

I posted a very similar post on an old thread about insurance for proton therapy. I thought perhaps I ought to post as its own topic so it is not buried. My 90 year old father was diagnosed with stage III colon cancer a year ago. Otherwise he was unusually healthy for his age so it was felt he could tolerate surgery despite his age. Surgery removed the primary tumor and cancer was found in 2 of 40 lymph nodes - so stage III. Within a month he had 2 tumors in his liver -so stage 4. The largest was about 2.5 centimeters. His CEA had gone from 27 before the surgery to 117 when the liver tumors were detected. One was inoperable because it was near the portal vein. His oncologist gave him less than a year to live and suggested palliative care or a small chemotherapy trial to increase his life by a couple months. We left that doctor and went to the University of Pennsylvania . After several rounds of chemo the tumors did not increase but were still not operable.

During my father's chemo, I had been corresponding with a triage nurse at MD Anderson in case the chemo did not make the tumors operable. I wanted to have a "plan B" set up - if this were possible. They required a lot of tests to take my father as a patient for proton therapy. There was a very specific profile identified to be a successful candidate for proton treatment of colon cancer liver metastases. There need to be 3 or fewer liver tumors. None of the tumors could be larger than (I think it was) 4 cm. There must be a healthy liver. There must be no sign of cancer anywhere other than the liver mets. My father had to have a PET scan, a CT scan and a chest x-ray at University of Penn and send them to MD Anderson. Once my father made it through that step and was still being considered, we had to go out to MD Anderson to have them re-run these tests to verify what they were seeing. All this took a few months which was very nerve wracking because my father had not yet been accepted as a patient and there was no "plan c". He had two more months of chemo in hopes of keeping things at bay so he would not become a bad candidate while waiting for MD Anderson to decide if he would be a good candidate. Additionally, possibly because of his age or it could be a general requirement - I am not sure, he had to have no history of heart disease, stroke, diabetes and generally had to - other than being stage 4 liver cancer patient - be in excellent health.

They finally accepted him and we went out there and stayed a month while he had a combined proton therapy and Xeloda, 5 days a week for 3 weeks. He became increasingly tired during the treatment and the last couple days developed a neuropathy with sores on his feet and it became painful to walk or stand so I took him to treatments in a wheelchair. His Xeloda was stopped for the last two day because of that and thankfully the neuropathy completely disappeared. That was November 2010. It is now June 2011 and he has had a normal CEA since December. His CT scans, and MRIs are showing no new cancer anywhere. The tumors have taken on a "post-proton therapy appearance". Since it is a radiation treatment, the tumors sort of melt over time and scar tissue ideally is left. His liver and renal tests are normal. He is walking around living his life and has no symptoms, pain or lingering side effects from the treatment. Obviously he will still have MRIs every 3 months and blood work to verify that things continue like this. But he is now 3 months beyond when he was suppose to be dead, is pain-free and is living his normal life.

About insurance.... my father was covered by medicare. Medicare does not cover experimental treatments. The fact that Medicare covered proton therapy for colon cancer might be useful when challenging a denial from an insurance company who insists it is (after being around for decades) that it is "experimental."


Re: proton therapy and colon cancer for the right candidate

Postby Jennyjump » Wed Oct 05, 2011 7:38 am

As an update to the post above, my 90 year old father is now a year post treatment with no sign of cancer on scans or CEA level after the stage 4 diagnosis. He is living his life; going over to the senior center everyday, volunteering to illustrate posters for the center and do drawings for the center newsletter. He is also going to concerts, etc. In other words, living a full, active, life. The Oncologist told us that there are no statistics for patients in their 90s surviving stage 4 colon cancer... for obvious reasons. I just wanted to post this update in case there is someone who meets the specific health profile I mention in my previous post, who is stage 4, who might be a good candidate, and who might want to consider this as a treatment option.

User avatar
Posts: 9487
Joined: Sun Feb 10, 2008 6:00 pm

Re: proton therapy and colon cancer for the right candidate

Postby CRguy » Wed Oct 05, 2011 11:49 am

Thanks for sharing that info. Cheers to your Dad for living life !

In Harmony
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Posts: 6360
Joined: Mon Dec 07, 2009 3:39 pm
Facebook Username: Michael Fletcher
Location: Buffalo, NY

Re: proton therapy and colon cancer for the right candidate

Postby SkiFletch » Wed Oct 05, 2011 11:57 am

That's really great news Jenny, and another weapon out there for the arsenal is always good to hear too :)
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

User avatar
Posts: 2230
Joined: Sun Jul 19, 2009 3:33 pm
Facebook Username: Jessica Ramos Smith
Location: Jacksonville, FL

Re: proton therapy and colon cancer for the right candidate

Postby jmarie » Wed Oct 05, 2011 1:12 pm

Thanks for posting this, I missed your original post. For some of us who are out of other tx options it is great to hear how other things are being used now.

Thanks, and I am glad to hear your dad is doing so well.
DX Stage IV 11/25/08
mets liver lung, kras mutant
Baby 2yrs old! I am 32yrs
Too many chemo txs to count
trying to find a clinical trial
"You can't stop the waves, but you can learn to surf"

Posts: 727
Joined: Sun Apr 11, 2010 11:23 am
Location: Brooklyn, NY

Re: proton therapy and colon cancer for the right candidate

Postby Bob_Weiss » Wed Oct 05, 2011 1:22 pm

A very interesting, positive story. I'm now going to do some reading about proton therapy, which I know nothing about. It is not currently needed since I'm NED, but I feel safer having as many possible treatment possibilities available in reserve just in case. I don't depend on my doctors to know all the treatment possiblities. Good luck, and hopefully we will be informed when your dad reaches 100.
Stage 3 R/C -1 node+ ( 7/09)
5 wks radiation, 2 wks chemo: 5FU (8-9/09)
Rectal surgery: tumor removal (11/09)
10 rounds Xeloda: 3000mg/daily 1 wk on/1 wk off (1/10-6/10)
Supplements: Aspirin, Calcium, Vit. D3
03/27/17: 7+ yrs. since surgery--still NED

Posts: 1651
Joined: Sun Nov 02, 2008 11:57 pm
Location: North Carolina

Re: proton therapy and colon cancer for the right candidate

Postby dianne052506 » Wed Oct 05, 2011 5:19 pm

The MDA website does not list treating colon cancer mets to the lung, but it does mention lung cancer. I have spoken with them, and they do treat CRC lung mets, they just can't in my case because I have so many nodules.
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again


Re: proton therapy and colon cancer for the right candidate

Postby Jennyjump » Thu Oct 06, 2011 12:01 pm

Yes, the profile is very specific for MD Anderson treating matastisized colon cancer with proton therapy. I think this specific patient profile is to not give false hope or have patients who need systemic treatment focusing too much on local treatment.

Unless it has changed since my father was evaluated, they treat stage 4 colon cancer with proton therapy if the patient has mets ONLY to the liver (as shown on CT), the mets have to be 3 or less (I think) and no larger than a certain size. Additionally, there are co-morbidities that will disqualify a person. Liver disease would be a problem. My father has no sign of heart disease, hypertension or diabetes or other major disease which helped them take a risk on him despite his age. An important aside is that my father's liver mets were inoperable because of being too close to the hepatic vein. This was actually a good place to have them for the proton therapy because the tumors could be better accessed by the proton bean without endangering other organs.

So, the profile is very specific; however, I wanted to post this in case there is someone who has this profile and would like to explore this option... I hope you find the right treatment for you lung mets.



Re: proton therapy and colon cancer for the right candidate

Postby Bj_thorpe » Sun Apr 22, 2012 5:39 pm

My brother (53) was diagnosed with stage 4 colon cancer (several places on left side of his liver & his back) last Friday. He began chemo the following Wed. -- on 3 days, off 7 days. It is a challenging place to be in looking for alternative to chemo. Looking also for natural remedies to build him up on his 7 off days. Any suggestions? Proton therapy is promising since is not so invasive. What side effects did your 90 yrs old father have (if any). My brother's doctor did not mention this as an alternative first. Any and all suggestions will be helpful. I am learning much and want to know more about nutrition, vitamin therapy, building immune system.

Posts: 128
Joined: Wed Apr 18, 2012 11:01 pm

Re: proton therapy and colon cancer for the right candidate

Postby JudyC » Sun Apr 22, 2012 10:59 pm

I am so happy for your father. I am continually thinking of my sister right now and this brought me to tears. Thank you.
Twin of sister with Stage IIIb cc.
Sigmoid resection 3/30/12
FOLFOX 5/1/12- 12 rounds


Re: proton therapy and colon cancer for the right candidate

Postby Addie2U » Mon Jul 23, 2012 6:51 am

Good morning, my name is Anne and my 48 yr old husband just turned 57. He had a colonoscopy and found one "grape like" polyp and one cancerous polyp that is now in the rectal wall and possibly one lymph node about the size of a BB. No where in the liver, lungs, etc. His blood level was .09 and Doc said normal was .05. They said they caught it early, however I'm wondering why radiation and chemo since they're gonna' remove the area anyway. I'm kinda' sick to my stomach thinking about him having radiation (not proton therapy, but radiation) and chemo . . . and while it will kill the cancer . . . it's also gonna' "kill" other things. We just found out Friday, so it is now sinking in and now I'm ready to fight the "all knowing" doctors. I trust doctors . . . but not when I ask questions and they kinda' "dismiss" my inquiries. UGH!

Posts: 5817
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: proton therapy and colon cancer for the right candidate

Postby weisssoccermom » Mon Jul 23, 2012 10:05 am

Hello Anne,
First of all, let me welcome you to the forum. I hope that you will register so that other members can 'communicate' with you via email or PM and vice versa. Next, let me assure you that your husband's treatment that has been laid out is very standard for rectal cancer. I don't know where the onc (I assume it was an oncologist - or perhaps a GI doc??) is getting his information from regarding the blood work. I'm assuming that your husband had a CEA test - pretty standard for colorectal cancer. Depending on the test used, the normal for a non-smoker ranges from 0-2.5 for the Seimens/Bayer test and 0-5 for the Roche test. (There are higher limits for a smoker). So, not sure with a level of 0.9 why the onc would believe that is high! Are you sure you have your values right??

As to why the radiation. Rectal cancer that is stage II or above, no matter how small the polyp might be, is generally treated in the neoadjuvant setting (presurgery) with chemoradiation. With one suspicious lymph node, that would place your husband in that staging range. The studies have all shown that when chemoradiation is given prior to surgery, it cuts the risk of LOCAL recurrence by approx 50%. Keep in mind that is LOCAL and not distant recurrence. A patient truly does NOT want to get a local pelvic recurrence - painful & hard to treat. So the reasoning behind neoadjuvant chemoradiation is twofold. First, the treatments are often necessary to shrink the tumor to help avoid a colostomy and/or give the surgeon better success at a reconnection. Secondly, the chemoradiation 'sterilizes' the nodal field. The pelvic area is rich in nodes and once the cancer gets into the lymph system there is always that chance that it can travel - to local areas and/or distant organs, like the lung or liver. You need to also understand that the pelvis is like a 'hub' for the lymph & vascular system - cancer can travel anywhere from the pelvis. Finally, you must realize that the pelvis, particularly in the male, is a harder to reach area. It is beneficial for the surgeon to have all treatments at his/her disposal (and the rad treatments will help in sterilizing the nodal field) to help make the surgery and future a success.

I'm assuming that your husband has had all the standard testing done which would be: a colonoscopy, blood work, CT/MRI/PET and an endorectal ultrasound. You need to also know that the 'standard of care' for chemoradiation is to allow the patient to have the oral form of chemo - Xeloda - during the 5-6 weeks of radiation. No, it's not fun is doable and your husband can get through it. There are a lot of tips that you should know about before your husband starts the treatments but rest assured, the chemorad treatments are standard and, IMO, are beneficial.

Do you have a surgeon yet? If so, do you know if the surgeon is a board certified colon and rectal surgeon? I ask because so many general surgeons will do the surgery but...most of us on here who deal with rectal cancer would HIGHLY recommend you seek out a board certified colon and rectal surgeon. These are surgeons who only deal with surgeries pertaining to the colon and/or rectum. They have passed rigorous testing, have done a specific fellowship (these are the guidelines for the USA) and again deal only with surgeries pertaining to the colon and/or rectum. Remember that in the male, the pelvis is a very tight area and you truly do want a surgeon who is specialized in this surgery to obtain the best outcome. Below is a link that you can use to make sure that the surgeon your husband decides on is board certified. In addition, I'm also posting a link that will better help you understand the staging process, etc. Remember that in rectal cancer, the patient is given a clinical staging. This is done BEFORE any treatment that would alter the 'staging'. If rectal cancer were only staged via the surgical pathology report, most patients would NOT be given accurate information because the tumor would have shrunk and/or any suspicious lymph nodes would likely not be there anymore. Treatments are based (both before and after surgery) on the clinical staging so it is very important for the doctors to have an accurate assessment of the patient's staging before any neoadjuvant treatment begins.

It's a lot to take in right now but take a breath and you'll both do fine. I would highly suggest getting a 3 ring notebook, complete with dividers. Your husband will be having repeat testing from now on and it's a good idea to keep all the reports from these tests. Make sure that you get the reports from the following: colonoscopies, ultrasounds, pathology, blood work, CT scans, etc. These reports are your husband's and he is allowed to have copies. If the onc is not cooperative, ask to have copies sent to your GP and get them from him/her. GOod luck. Remember you can always seek a second opinion. Not all oncs are ones that dismiss - find an onc that your husband feels comfortable with and trusts. He/she will be your main doc for quite some time, but rest assured that with a suspicious lymph node - neoadjuvant chemoradiation is the standard of care for rectal cancer patients. ... cer-staged
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Posts: 1
Joined: Mon Jul 23, 2012 4:25 pm
Facebook Username: Anne Causey

Re: proton therapy and colon cancer for the right candidate

Postby Addie2U » Mon Jul 23, 2012 5:08 pm

Hey Weiss -

Thanks for an extensive answer . . . more than I've received from any doctor so far. First let me say I had to LOL at my first sentence . . . I meant to say I'm 58 and my husband, 57 was recently diagnosed.

I've been researching this like crazy. Found the Cancer Treatment Centers of America and they have one 4 hours away from us. My spirits soared. Called our insurance company and it's "out of network", so we're looking at the very least $18,000 out of pocket. Great . . . cancer . . . the gift that just keeps on giving.

We're suppose to see the oncologist on Wed and the Radiologist next Monday. I just feel so helpless . . . which isn't good for a control freak, such as myself. LOL
Oh well . . . such is life.

Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”

Who is online

Users browsing this forum: SteveNZ, Yahoo [Bot] and 40 guests