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Survey on Variation in treatment protocol for SCCA by MD and/or treatment facility & anal cancer=venereal disease/STD/HPV

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

I have been reading posts since joing CSN in Feb. I am at MDAnderson, Houston, TX, with t3n0m0 squamous cell anal cancer. Biopsy shows HPV16...getting 1 shot of mitomycin + 5FU x 4 days chemo + Variant Trilogy radiation daily x 54 Gy....+ second round of 5FU chemo x 4 days at wk 5 without Mitomycin + daily radiation.....chest/abd/pelvic CAT scans done before treatment, scheduled 3 months after beginning treatment, and q3mos thereafter for a year....not PET scans recommended; I refused cisplatin and other ---platins due to the neuropathy reported. This would have been their first choice as an institutional protocol. MDAnderson does not use Mitomycin usually for anal cancer even though recent clinical data better survival rates than cisplatin.....

I am still getting used to labeling myself as having a STD and subsequent cancer. My lifestyle is conservative and does not lend itself to anything other than conventional sex.....my husband is totally bananas about this....the same as contracting HIV! or so the stereotype.... what are others doing about this cause for anal cancer?

I have also noticed that a lot of people posting on this site have such different treatment prescribed by MDs....many go against the recommendations in the NCCN protocols....I wonder how different my treatment and future outcome would be with another MD or another facility...just take a look at the CAT scan vs. PET scan (not recommended for used in anal cancer), and surgery vs. chemoradiation timing....

I would like to do an informal survey - could you post what type of facility you are receiving treatment in, if you donot mind mentioning city/facility name, whether your radonc/ medonc/ surgeon are community based office MDs or part of a facility like MDAnderson? treatment protocol? many have posted getting surgery before chemoradiation, which has shown poorer survival outcomes in clinical data. I wonder what the distribution is with different treatments being prescribed......I think there is a relationship between MD affiliation with cancer center or office-based, also location of facility....check out this article.... http://www.sciencedaily.com/releases/2013/03/130301122301.htm

The study, led by researchers at Fred Hutchinson Cancer Research Center and published in the March 1 online edition of Cancer, found that patients who were treated at hospitals that saw a high number of head and neck cancers were 15 percent less likely to die of their disease as compared to patients who were treated at hospitals that saw a relatively low number of such cancers. The study also found that such patients were 12 percent less likely to die of their disease when treated at a National Cancer Institute -designated cancer center.

"Where you're treated matters," said corresponding author Eduardo Méndez, M.D., an assistant member of the Clinical Research Division at Fred Hutch.

Méndez and colleagues also hypothesized that patients with head and neck squamous cell carcinomas (HNSCCs) who were treated at high-volume hospitals would be more likely to receive therapy that complies with National Comprehensive Cancer Network guidelines due to the complexity of managing these cancers. Surprisingly, this was not the case, the researchers found.

According to an American Cancer Society estimate, 52,610 Americans were newly diagnosed with head and neck cancer in 2012. Many patients are diagnosed with locally advanced disease that has spread to the lymph nodes, which carries a much poorer prognosis compared to early stage disease. Patients with advanced disease require multidisciplinary management by a collaborative team composed of multiple physician specialties and disciplines. NCCN guidelines, based on data from randomized controlled trials, recommend multimodality therapy (either surgery followed by adjuvant therapy or primary chemo-radiation) for almost all advanced cases.

The study found that despite the improved survival at high-volume hospitals, the proportion of patients who received multimodality therapy was similar -- 78 percent and 79 percent -- at low- and high-volume hospitals, respectively.

"NCCN guidelines are well publicized in the medical community and it was exciting to learn that clinicians at both high- and low-volume hospitals are implementing these guidelines into the complex clinical management of patients with head and neck cancer," said Méndez, who is an expert in the surgical treatment of head and neck cancer and an associate professor of otolaryngology-head and neck surgery at the University of Washington School of Medicine.

"Although this study does not necessarily mean that all patients with advanced HNSCC should be treated at high-volume hospitals or at NCI-designated cancer centers, it does suggest that features of these hospitals, such as a multidisciplinary team approach or other institutional factors, play a critical role in influencing survival without influencing whether patients receive NCCN-guideline therapy," the authors concluded.

The implementation of NCCN-guideline therapy can be challenging because there are toxicities associated with these treatments that require a high level of support and infrastructure, such as that found at comprehensive cancer centers, according to Méndez.

The Hutchinson Center/University of Washington Cancer Consortium is the Pacific Northwest's only NCI-designated comprehensive cancer center. Patient care is provided at Seattle Cancer Care Alliance, which, in partnership with Fred Hutch, UW and Seattle Children's, is a member of the NCCN.

The authors said that given the complex treatment and coordination required for patients with advanced HNSCC, suboptimal care and outcomes may be more likely in these patients compared to those who require less-complex care. In addition to their complexity, treatment modalities for advanced HNSCC have significant toxicities, which pose an additional barrier for fully implementing NCCN guideline therapy.

Prior studies in diseases other than HNSCC have shown that hospital volume and physician volume influence outcomes. However, this is the first study to examine whether hospital factors are associated with receiving multimodality therapy for patients with advanced HNSCC.

To conduct the study, researchers used the Surveillance, Epidemiology, and End Results-Medicare database to identify 1,195 patients age 66 and older who were diagnosed with advanced HNSCC between 2003 and 2007. Treatment modalities and survival were determined using Medicare data. Hospital volume was determined by the number of patients with HNSCC treated at each hospital.

Co-authors with Méndez included Arun Sharma, M.D., of the Department of Otolaryngology at the UW; and Stephen Schwartz, Ph.D., in the Program in Epidemiology at Fred Hutch.

The study was funded by a grant from the National Institutes of Health and received additional support from Fred Hutch and UW.

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

I was treated at Lahey Clinic in Burlington Massachusetts. Although Lahey is probably not as well known as other Boston hospitals, it's a high ranked, excellent hospital. It would be classified as a facility as opposed to a community based office. I had six weeks of radiation (not sure of the machine type or dosage) with two rounds of chemo - 5FU and mitomycinC (mitomycinC both times). Catscan and Petscan prior to treatment and at least one each after treatment.

Initial diagnosis (4 1/2 years ago) was squamous cell, found from biopsy of two external masses in the anal region - stage two, no node involvement. The tumors were not tested for HPV. Subsequent testing for HPV was negative (although I was told the HPV test is not reliable - the virus may be dormant or may have been eradicated by the treatment). No prior indication of an STD, although from research I've found that HPV can exist without any visible signs. (There's a very good discussion from Dr Oz on HPV - very interesting and enlightening - http://www.doctoroz.com/episode/30-and-older-the-new-faces-hpv.)

It's important to note that anal cancer has little to do with unconventional sex. I read that 75-80 percent of sexually-active adults will have been infected with one or another HPV strains before the age of 50. It's very communicable and undetectable. One of those silent viruses. Your husband should not be in an uproar, although I understand why he might be. It might be helpful to research HPV and have him read about it. Having HPV does not mean you did anything wrong, it just means you had sex at least once in your life. Unless you and your husband were both virgins when you married and never strayed, either one of you could be the carrier of the HPV virus.

My best to you - hope your treatment goes as smoothly as possible.

 

Edit: Something I forgot to add... A lot of us take the blame of anal cancer upon ourselves. I know I did, for a while anyway. But it shouldn't be so. Did you know (I learned this from the Dr Oz show) that the HPV virus lives on a man's, shall we say, scrotum? If two people are in the missionary position (all very conventional and all), just where do the scrotum lie? Yeah, likely on a woman's anal area. This might be way too much information and too graphic, and I'm sorry if it is, but hey, we've all been there. THAT could very well be where we women are picking up anal cancer due to the HPV virus. And that's ONLY if HPV is truly responsible for anal cancer. I'm very wary of statistics. Unless we know who and where the polling pool comes from, stats are unreliable in my opinion. I asked at Lahey if they feed their data into some kind of national information center, and the answer was no. If they don't, then other hospitals aren't as well. And if the tumors aren't tested (which mine wasn't), who's to say what the real cause of the cancer was. I know I had several years of bad constipation prior to diagnosis - I blame THAT more than an unconfirmed HPV diagnosis.

Ok, rant over.....

 

Marynb
Posts: 1134
Joined: Aug 2012

I couldn't agree more about being treated at a top rated hospital, if it is possible. Many here were not treated at top rated hospitals, but are quite happy with their care and may well be cured of this cancer.

I was treated with the protocol, but it is my belief that my chemo included mitomycin for both rounds.

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I was treated according to the NCCN guidelines--2 rounds of Mitomycin and 5FU occurring in weeks 1 and 5 and 30 rad treatments over a 6 week period with radiation measured at 54 Gys total.  My cancer was staged at T1-2N0M0.  I am now at 4 1/2 years post-treatment, even though I was not treated by oncologists who specialize in anal cancer or at a facility that is well-known for treating the disease, such as MDA.  My oncologists were brilliant and on top of their game and I felt I received as good of care as I would have at one of the top-rated hospitals.  I am still being followed up by both my colorectal doctor, who I now see every 6 months for DRE and anoscope (she saw me every 3 months for the first 3 1/2 years), and my med onc, who orders a CT scan for me every 6 months.  I am hoping that will change later this year as I hit the 5-year survival mark.  I have absolutely no complaints or regrets about the doctors who treated me and continue to follow me.     

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

Thanks much for your replies. What about all the others who post treatment received which varied from NCCN protocol? I wonder what the reasons for not following the protocolos were....if any.....I'm very thankful we have a forum for comparing notes....I was initially considering returning to NY Sloan Kettering for treatment, but my radiation oncologist buddy said MDA is at the top of the quality pyramid in the US if not the world...but even within MDA there are variations for treatment which are not all based on clinical evidence. There really are no clinical trials of sizeable numbers which compare variations in treatment and survival outcome at 3 yrs, 5 yrs, and longer down the line. That said, keeping up with research and educating myself and asking a lot of questions, as well as comparing experiences with others, is my method for maintaining sanity...thanks 

z's picture
z
Posts: 1249
Joined: May 2009

Hello, I had same tx that you are having with just 1 infustion of myto.  I was Stage II and completed tx 6-30-09.  So far so good.  Treated at Florida Gulf Coast Oncology, Clearwater FL.  I asked that my tumor be tested for HPV and it was positive. 

z's picture
z
Posts: 1249
Joined: May 2009

Hello, I had same tx that you are having with just 1 infustion of myto.  I was Stage II and completed tx 6-30-09.  So far so good.  Treated at Florida Gulf Coast Oncology, Clearwater FL.  I asked that my tumor be tested for HPV and it was positive. 

z's picture
z
Posts: 1249
Joined: May 2009

Hello, I had same tx that you are having with just 1 infustion of myto.  I was Stage II and completed tx 6-30-09.  So far so good.  Treated at Florida Gulf Coast Oncology, Clearwater FL.  I asked that my tumor be tested for HPV and it was positive. 

jcruz
Posts: 221
Joined: Jan 2013

I was treated in local doctors' offices, med onc and rad onc.  The med onc office had an infusion center staffed by RNs  and I got all of my chemo and IV hydration there.  I was referred to a gyn onc not in our doctor's group for an exam prior to the beginning of my treatment.  He was part of another larger doctors group about 30 miles away from where I live.  Once I knew that my oncologists had treated anal cancer before and were following standard protocol I felt no need to go off to a teaching hospital or a cancer center, not that I actually could have if I'd wanted to.  I have an HMO insurance which limits who you can see and I also don't have the personal financial ability to pay out of pocket.  I was quite happy with my treatment.  You might get the best care at a cancer center but that is not the only place that you can get very good care.

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

Thanks for your response. What concerns me is that there are substantial differences among MDs and where they are located and what protocol they follow. I just asked my MDAnderson radiation oncoogist re: PET scans, and he again reiterated that PET scans are not accepted practice for SCC anal cancer, so I wonder why people on this forum have reported getting PET scans.....not to mention that surgery is the last resort rather than the first step in treatment. And again, I wonder why people have posted that MDs had them undergo surgery as first line of treatment. Such huge variations in which MD decides to do which treatment is very worrisome to me, esp if "evidence-based" protocols have existed for seeral decades.

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

Hi NYin Tx,

My initial surgery was a biopsy to determine whether it was cancer or not. After treatment I had six biopsies done at about six months out from treatment, all at one time in different areas of the anal canal. I had a lot of damage due to a two-month hospital stay and TTP and the doctor felt she needed to do the biopsies to check out what was going on down there - I let her go ahead and they've healed pretty well. Not sure if biopsies count as 'surgery' or not...

The first petscan I had was done to define the region that needed treatment. My rad oncologist said not everyone uses petscans, most only use catscans, but he felt the petscan gave added info as to the area needing treatment. I *think* I had another petscan after treatment, but I'm not really sure about that - it was a while ago.

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

where did u get treatment? in the community? office? local hosp? or cancer center? PET scans expose u to >> radiation without any additional info for anal cancer according to established protocol.

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

Hi - See my post above for the details on where I was treated. According to the NCCN guidelines (which as far as I know are the golden standard):

'Consider PET-CT scan' with the footnote 'PET-CT scan does not replace a diagnostic CT. The routine use of PET-CT scan for staging or treatment planning has not been validated.'

My doctor felt the PET scan would yield more definitive information.

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

Hi,

I was treated at MD Anderson. I had the 5FU and Cisplatin regime with radiation every day M-F for about 6 weeks.  I was Stage 111a with lymph node involvement.  That was 3 1/2 years ago. I had some side effects but I think it was the radiation more than the chemo.  I handled the chemo well, no major issues. I asked aboout Mitomycyin vs. Cisplatin when I started there.  Was told that the differences were slim and that Cisplatin wasn't as toxic and hard on the kidneys.  As I learned more I read that Cisplatin is used for other cancers and sometimes if it spreads. So in my mind I figured okay, just in case....

Most people get Mito and 5FU from what I read over the years. 

Wishing you well,

Liz

NYinTX's picture
NYinTX
Posts: 64
Joined: Feb 2013

I refused to take anything which could ven remotely have neuropathy as a side effect, so MDA opted for mito, but not happily; bu as you point out, this is actually not really that significant when you look at the whole picture; my concern now is about treating possible recurrence with surgery which I will not be happy with....and probably not agree to undergo; all these cat scans q3mos are also disconcerting; I'm battling the dilator right now which refuses to be inserted, and requires a lot of forceful pushing.....feels like what I imagine rape would feel  like

 

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