New diagnosis looking for cancer center

 Hello Ellen, I am always sorry to hear of another person suffering from cancer.  I was diagnosed Aug. 2017 with stage 3a anal/rectal squamous cell carcinoma.  I had NO symptoms until an out of the blue episode of fecal incontinence... once the colonoscopy was performed and that doctor told me "there's only ONE way to take care of this... two strong chemos simultaneously with strong radiation therapy and then "required" radical APR surgery"... needless to say once I began my research I was horrified.  I pray that your friend has an excellent primary physician along with all of the other doctors they will begin consulting with... Really, the MOST important thing is to do your homework and make sure to thoroughly understand what each specialist is telling you what they plan on doing for your treatment.  Once I met with my radiation oncologist and told him that I did not want chemo/rad OR surgery at this time (you can read my other threads and my profile to see more about my case)... he was more than understanding that I just want palliative care at this time... while also continuing consultations with chemo doctor ... just to get all of the facts on how they would treat my case.  

So now here I am eight months post-diagnosis... I have had NO chemo... NO radiation... I do take four Lomotil and one Immodium each day just to allow me to work and shop, etc (without it and the tumors on the sphincters... I would hardly be OFF the toilet).   I just got word two weeks ago that I have approval to consult with Memorial Sloane Kettering... the number two cancer treatment center in America)... your friend might need the same help from one of their specialists to get them into the most highly qualified place for help with their particular cancer...  I believe it is in Texas... MD Anderson...  Like my doctor said... "If you want someone that can think outside the box... you have to go to a center that does high volume of procedures and has the reputation... otherwise the typical cancer treatment center must go by "standard protocol" to protect themselves from liability issues".  And even Sloan Kettering has FOUR areas that they report mistakes that affect outcomes (you must research like your life depends upon it...  because it does)...

So... in a nutshell ... I have been taking the wait and see approach... not allowing them to scare me into starting treatment right away.  I am not in pain, I travel for work and I am active and able to live my life... I don't want to be in doctors offices, hospitals, treatment centers and such for the rest of my life... I am doing everything I can to jump start my immune system to take care of the tumors... I am reading the bulletin boards here and numerous books that are recommended ... 

My particular cancer shows a fifty percent survival rate at five years post-treatment (if I would choose that route)...  many of the survivor's stories I have read of people with the same cancer that have also opted out of the chemo/rad live LONGER than that.  

If you or your friend wish to discuss in more detail some of the things I do to help me with the incontinence on a daily basis or have other questions... feel free to send me a private message and we can communicate further.  

Each person is different and one of the main things to consider is your own personal strengths and beliefs ... You really need the confidence to choose what is best for you.  

Sending positive energies and healing energies to you and your friend.

Kind regards, Moxie

Hi all. This is my first post here. I am very upset and anxious about what happened with my fiance. After a few months of IBS symptoms, he developed a very large hemoriod from straining. After going to a useless Family Practice Dr. for relief from the hem., I got him to go see a GI surgeon to remove this painful hemorid that wasnt going away. This past Friday he went and she had to administer General Anesthesia to removed the hemoroid. After surgery she told him that there is cancer in the lower colon/anus area and that he had to see an Oncologist. I went to stay with him Friday night. He was able to urinate a small amount that night. The next morning he could NOT urinate and I took him to the ER late morning Saturday. OMG, they could not get the cathedor in. 7 different nurses tried and he was in such pain. They had to get the oncall Uroligist there. He finally arrived and got things moving. After this LONG story I'd like to say what was even more upsetting. The PA and nurses in the ER made it seem like there was a scary reason that the cathedor wouldnt go in. I'm thinking cancer in in the prostate and anus. Then I asked the PA what the GI surgeons report said about her findings. He talked to her and told us that her report reads that it's a 'circumferential rectal tumor' not obstructing the anus completely. I spoke with him without my fiance listenng and he implied that it is pretty much fatal. I'm so upet and overwhelmed. I'm terrified to meet with the Oncologist now. He has yet tp get the CT scans and pathoogy. Does anyone know aboit this type of cancer? Please help.

Lisa

Your questions about getting treatment at a large cancer center or locally are valid.  I do believe, for a lot of people, going to places such as MDA are the best plan of action.  However, in my case, since I live near a large city (Atlanta) that has very good medical facilities and doctors, I was fortunate to be able to get very good (and successful) treatment right in my own community in 2008.  I will add that I was staged right on the fence between stage 1 and 2.  Had I been a higher stage, things most likely would have been different and I would probably have found myself in Houston.  Treatment guidelines for anal cancer are very specifically outlined by the National Comprehensive Cancer Network--www.NCCN.org and can be carried out at most major hospitals and even regional and local hospitals for lower stages. 

I think the first question to ask of their doctor(s) by anyone who is diagnosed with anal cancer is "how many cases of anal cancer have you seen/treated?"  Experience matters!  Again, I was fortunate to be referred to a colorectal surgeon who was quite familiar with anal cancer diagnosis and treatment.  My medical and radiation oncologists were also very much up to speed on it.  Patients diagnosed with anal cancer should immediately try to learn as much as they can about the disease and treatment by signing up on the above-mentioned website so that they can ask lots of questions of their doctors.  They will then have vital information about what tests are needed to properly stage the cancer and what the proper treatment should be.

There will most likely be more comments about this and not all people may agree with what I've said.  That's okay.  Each person diagnosed with anal cancer needs to be confident in their doctors and healthcare facilities.  If that means going to a major cancer center such as MDA, then that's exactly what they should do.  I feel very fortunate that that wasn't necessary in my case and that I will soon be celebrating 10 years post-treatment. 

zac495 said:

Thank you for your reply. I'm

Thank you for your reply. I'm SOOOO happy for you - 10 years! I'm at 5! I wasn't fortunate with treatment - stem cell transplant - but I'm alive!

HUGS

Ellen

Thank you very much.  I'm sorry that you had to have the transplant, but I hope you are doing okay now.  Best wishes to you!