Recurrance-needing to make treatment decisions

mp327 said:

Hi pjs
I will share with you what my colorectal doctor told me when I asked her "what happens if it comes back?" Her response--"You'll have surgery." By this she meant APR with permanent colostomy. I know this is not what you want to hear and it wasn't what I wanted to hear when I asked the "what if" question. Unless there's something new out there that I and many others do not know about, I think this is the only answer to this question. However, as I and others have suggested to you, a second opinion from Dr. Eng at MDA would be highly advised because you just never know when something new might be tried. Time is of the essence, so I hope you can get an appt. with her (or another doctor who specializes in recurrent anal cancer) ASAP. I can't speak for you or anyone else, but I would need at least a second opinion, even if the answer is the same, to satisfy in my own mind that it was the right (and only) option. Also, something else I might suggest is asking your doc if you can speak to another person who is living with an ostomy to get the real scoop on how life is with one. You might find out that they have adjusted just fine. You might try going on the website for ostomates to see if someone there will speak with you. Their address is www.ostomy.org. Also, you can go on the colorectal board of CSN--I'm sure lots of those folks would be most happy to give you lots of information based on their own experiences. I think having information from a person who is living with one could make it much less scary. May God bless you as you wrestle with this huge decision.

7243 said:

Treatment options and Cancer Treatment Centers
I guess we all fear recurrence and I'm so sorry you're dealing with this. That sounds so flimsy, however I do mean it from the bottom of my heart. What you say makes sense and I can only imagine what it must be like to try to "wrap your mind around this decision".

Like Martha did, on my 6 month follow up in late August I asked my colo-rectal surgeon about recurrent disease and how she treats. She said the same thing, Abdominal Perineal Resection or APR with permanent colostomy is the standard of care and is what you'll see in the NCCN guidelines for the treatment of recurrent anal squamous cell cancer. However, she also said she sends all her patients to see the radiation oncologist to discuss Brachytherapy as an option, which is the placement of radioactive seeds in the recurrent area. There are anal cancer patients with recurrence who are too sick (cardiac issues, diabetes, etc.) to handle major surgery ... an APR and colostomy, and Brachytherapy is a non-invasive treatment option for these patients, as I understand. Although this is much less invasive, according to my surgeon there are possible complications such as loss of bowel control that could seriously effect quality of life and I know nothing of the survival rates after Brachytherapy as I haven't seen clinical trials supporting this approach in the literature, however my access to such things is limited. So, long story short, it seems Brachytherapy has been used in the treatment of recurrent anal squamous cell and may be something you want to ask about and if it is even an option for you.

That being said, the NCCN guideline for the treatment of anal canal cancer discuss APR as the approach to treat recurrent disease. After discussing all the options available with physicians you trust; the complications/risks associated with each, the benefits of each, survival rates and such AND discussing this with your family and loved ones ... you'll know what is best for you. Trust yourself to make a good decision after you have all the information ... in your heart you will know what is best for you.

As far as cancer treatment centers, it is well understood that MD Anderson is a world class facility for the treatment of cancer and rare cancers. However, you may not be able to get there. Other facilities you may consider for your second and/or third opinions; UCLA Jonsson Cancer Center in Los Angeles, University of California San Francisco Cancer Center, Duke University Morris Comprehensive Cancer Center in North Carolina, Moffitt Cancer Center in Tampa, Florida, The University of Pennsylvania Abramson Cancer Center, Dana Farber-Brigham and Women's cancer treatment in Boston, Northwestern University Medical Center in Chicago, Sloan-Kettering in New York, Roswell Park Cancer Institute, New York, and there are others. Another way to find a facility is to look at where the physicians and researchers who worked on the NCCN Anal Cancer Treatment guideline are in practice and contact those cancer facilities and ask about oncologists and surgeons who care for patients with anal cancer. You'll find many physicians listed in the NCCN guideline. Just a thought ... I'm not a physician, so I just mention all of this as a person who was treated for anal cancer. I hope you find some bit of this helpful to you.

I wish you strength and peace ... and I hope you'll let us know what you decide and let us continue to support you on your journey. Sending a warm and supportive hug to you.