Recurrance-needing to make treatment decisions

pjs62

Although I did the 'usual' chemo/radiation treatment for anal cancer, apparently it didn't work because it came back (or never fully left). As I said before, my colon doctor along with others on a tumor board, said major surgery is the only option left. I feel there has to be another option to persue first.
I'm getting anxious because I know I need to make some decisions....& should do so very soon. But I still have too many questions & need that second opinion before making the final decision for my treatment.
Have any of you had a recurrance of this cancer? What were your options, or what did you decide to do to treat it? Any & all input will be greatly appriciated....I feel at a loss at this time. My husband is a great support, but he says the final decision will be mine.

mp327

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.

pjs62

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.

many thanks....
Hi mp327...
Thanks for your reply. I will be checking out MDA in Texas & also Cancer Centers of America in Chicago (although from what I've read on here not too many happy with CCA). I go back to my colon dr Sept 16th so hope to have some answers by then.
I have heard good & bad about the ostomy but I just can't 'wrap my head around it' as yet! I'm only 48 & just hope whatever treatment we do, it'll give me the best quailty of life for as long as possible to enjoy time with our kids & grandkids. (does this make sense?)

mp327

pjs62 said:

many thanks....
Hi mp327...
Thanks for your reply. I will be checking out MDA in Texas & also Cancer Centers of America in Chicago (although from what I've read on here not too many happy with CCA). I go back to my colon dr Sept 16th so hope to have some answers by then.
I have heard good & bad about the ostomy but I just can't 'wrap my head around it' as yet! I'm only 48 & just hope whatever treatment we do, it'll give me the best quailty of life for as long as possible to enjoy time with our kids & grandkids. (does this make sense?)

pjs62
Yes, it makes sense. While an ostomy would require some adjustments in your life, I think being able to spend time with your family and watch your grandchildren grow up would make it all worthwhile. I know the thought of living with an ostomy is daunting right now for you, as it would be for anyone. I truly do understand your feelings about this. Honestly, that is one of my biggest fears about this disease and I'm sure I'm not alone. I'm being very upfront with you, as I truly do get it. None of us knows how we would react to receiving the news that you've gotten. I think after you get another opinion, you will be able to make this decision with peace in your heart about it.

mxperry220

Additional Chemo
My chemo doctor told me when I was first diagnosed with anal cancer if there was a recurrance there would be additional chemo to see if the additional chemo worked before a colostomy procedure was done. You might check with your chemo doctor if you have not already done this before you decide on colostomy surgery.

mxperry220

Colostomy
My neighbor's brother and a friend of my sister in law's have colostomys. They function fine with them. My sister in law's friend is a nurse and she said you would never know she had it. She said she "works circles around her". My neighbor said her brother has had his for 15 years and has had very few issues. She said he has some food restrictions like no nuts as this interferes with the colostomy. There have been many improvements made with the care associated with colostomy bags.

I like you was horrified of the possibilty of having a colostomy bag but decided if it could save my life I would have it done. As it ended up so far I am cancer free without the need of a colostomy.

Best of luck with you decision. I know you will make the right decision for youself.

z810840b

mxperry220 said:

Additional Chemo
My chemo doctor told me when I was first diagnosed with anal cancer if there was a recurrance there would be additional chemo to see if the additional chemo worked before a colostomy procedure was done. You might check with your chemo doctor if you have not already done this before you decide on colostomy surgery.

whats happens next
I asked the same question of my colo-rectal surgeon...If the tumor wasn't gone..what would happen?He said a little more chemo..I am sure every case is different..So definitely get a second opinion..Good luck to you...Hugs ..alyse

ally bongo

second opinion
hi
i went for a second opinion on my first treatment and found it very helpful. i went for an appointment with a Dr Nathan Mayora. he used a vinegar treatment to show up if there was any cell recurance in the area I had my tumour removed and although the scans and the surgeon couldn't see anything they still recommended chemo and radio. Dr Nathan found cell recurance so early on that i will now see him every six month for how ever long it takes. every time there is microbial recurance he can remove it before the hpv turns into cancer.
this treatment is not new it has been used in cervical cancer for years. Dr Nathan is using it on the anus. many women with cervical cancer avoid chemo and radio by having this treatment. i am not sure where you are based but it has given me so much hope i do not feel the fear of it coming back as the removal is so quick with only slight discomfort.
look at changing your diet. read about juicing to better health. it sounds wacky but i am in great condition despite being on my last two days of treatment. i will give you his secretarys mail perhaps she can inform you of the nearest dr who uses this kind of treatment.
Nicky.Hickey@homerton.nhs.uk

mp327

ally bongo said:

second opinion
hi
i went for a second opinion on my first treatment and found it very helpful. i went for an appointment with a Dr Nathan Mayora. he used a vinegar treatment to show up if there was any cell recurance in the area I had my tumour removed and although the scans and the surgeon couldn't see anything they still recommended chemo and radio. Dr Nathan found cell recurance so early on that i will now see him every six month for how ever long it takes. every time there is microbial recurance he can remove it before the hpv turns into cancer.
this treatment is not new it has been used in cervical cancer for years. Dr Nathan is using it on the anus. many women with cervical cancer avoid chemo and radio by having this treatment. i am not sure where you are based but it has given me so much hope i do not feel the fear of it coming back as the removal is so quick with only slight discomfort.
look at changing your diet. read about juicing to better health. it sounds wacky but i am in great condition despite being on my last two days of treatment. i will give you his secretarys mail perhaps she can inform you of the nearest dr who uses this kind of treatment.
Nicky.Hickey@homerton.nhs.uk

Aceto whitening
I have heard this procedure referred to as "aceto whitening" and know someone who has undergone this many times for anal cancer detection. It is the same technique as is used to detect HPV cells in the mouth, done by many dentists these days, which I have had done. The vinegar solution is applied, then a special light is used to identify areas that respond to the solution, indicating cell changes. I don't think this is being widely used at this time and I really don't understand why not.

7243

pjs62 said:

many thanks....
Hi mp327...
Thanks for your reply. I will be checking out MDA in Texas & also Cancer Centers of America in Chicago (although from what I've read on here not too many happy with CCA). I go back to my colon dr Sept 16th so hope to have some answers by then.
I have heard good & bad about the ostomy but I just can't 'wrap my head around it' as yet! I'm only 48 & just hope whatever treatment we do, it'll give me the best quailty of life for as long as possible to enjoy time with our kids & grandkids. (does this make sense?)

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.

pjs62

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.

Treatment Centers & Options...
Thank you for your input...I appriciate any & all information. We live in central Indiana so trying to find a center within 1-2 hrs from home for my 2nd opinion. I feel the APR surgery is kind of a 'cop-out' so to speak...there must be another option & why I will get the 2nd (& 3rd if needed) opinion.
I'll keep posting my progress....your support means so much since you've been thru this as well.

blessings & hugs