Anal Cancer

I was just diagnosed this week. After seeing 2 radiologists and my Oncologist/Gyno they all said because of the area where the tumor is, I have no options but to have the rectum removed. I would of course have to wear a colostomy bag for the rest of my life. I'm just 61 and this seems extreme. I have an appointment at Sloan K this coming Monday to meet with a colorectul/surgeon for a second opinion. I'm terrified. I've been reading on this board about various chemo and radiation,however, have not seen anything regarding the above.

Can anyone offer any insight? This is my first post and I am grateful to all of you for the information you provide here, especially to newbies.

Thank you!

K

kihonkumite said:

Your post Farrah's Disease

I was just diagnosed with this. I have another dr. appointment in a few days to see what they have to say, it's at Sloan. However, 2 dr.'s that a I trust said that my rectum will have to be removed and I will have to have a colostomy bag forever. I'm 61 and not at all ready for this diagnosis. One dr. said radiation/chemo won't work for me as it's in a diffiuclt spot.

Any insight?

Thanks so much.

Diane

Definitely get that second opinion at MSK.  Our friend, Sandy, who is in this support group, sings high praises for Dr. Martin Weiser at MSK.  Perhaps she will chime in with more information about him and the medical team at that facility.  I would definitely not take the opinions of the first two doctors as the final word.  Many people are diagnosed with this disease in Stage 3 and still receive the usual protocol of chemo/radiation with no need for surgery and do quite well.  As one of our other posters mentioned, please go to the website for the National Comprehensive Cancer Network at www.NCCN.org and register.  You can then view the most current protocol guidelines for the treatment of anal cancer.  Get familiar with them before you have the appt. with the next doctor.  They will help you come up with a list of questions to ask. 

As for those doctors telling you that you would need a colostomy because of the location of your tumor, I am skeptical of that.  Radiation can be very precisely targeted, sparing surrounding tissue from irreversible damage.  The chemo is given as a boost to the effectiveness of the radiation, as it makes the cancer cells more vulnerable to the effects of the radiation.  I don't know what specialties these doctors are in, but please keep in mind that many doctors are very unfamiliar with this disease because it is rare.  A specialist is definitely should definitely be consulted. 

What kind of workup have you had so far?  Staging is usually done after a PET scan.  If you can provide more details of what you have already undergone in the way of staging/testing, that would be most helpful.

We will support you here, so please come back and share with us.  We can help you in ways the doctors can't because we've been there.  I wish you all the very best.

kihonkumite said:

Your post Farrah's Disease

I was just diagnosed with this. I have another dr. appointment in a few days to see what they have to say, it's at Sloan. However, 2 dr.'s that a I trust said that my rectum will have to be removed and I will have to have a colostomy bag forever. I'm 61 and not at all ready for this diagnosis. One dr. said radiation/chemo won't work for me as it's in a diffiuclt spot.

Any insight?

Thanks so much.

Diane

It's great that you are getting a second opinion from Sloan. I had much the same diagnosis as you, with two doctors telling me to have surgery right away.

They did not know what they were talking about.

I had Doctor Weiser. He is wonderful. I had chemo and radiation and am cancer free. Everything else is still in tact.

I saw a Physical Therapist and a Women's Health Psychologist for the damamge done to my vagina. As a result, that is almost perfect again too.

Don't give up.

I am happy to go to your appointment with you if I can arrange my calendar.

Good luck,

Sandy

kihonkumite said:

anus has practically closed up

When I had my recent colonoscopy, the hole was so small that even the pediatric scope couldn't fit. Dr. had to dilate with his pinky finger before it would pass. So, after much hassle and aggravation not to mention embarassment, the biopsy was done and it is indeed anal cancer. I am going to Sloan on Monday for a consult with a surgeon. Of course, I'd like to avoid this at all costs, especailly the colostomy bag which I was told I'd have to have and have NO options. Needless to say I'm terrified. Has anyone had there anus close up? Going to the bathroom is terrible painful and I am constantly taking softeners and laxatives. They tell me if I can't "go" I could rupture.

Thanks you all who respond.

 

K

I know of a couple of people here in the UK who had temporary colostomies prior to nigro protocol. They have since had successful procedures to reverse the process & are doing well. I am so glad you are having a second opinion. Let us know how you get on.

Liz

kihonkumite said:

2nd Opinion tomorrow at Sloan

After reading most of the posts here, I am convinced that although radiation/chemo is not great, it is certainly better than having my rectum removed. So, I thank you all for your insight and invaluable experiences.

I'll post again after I know more.

Thank you all for your support.

 

k

Hi, I hope you get the answers you seek with another opinion. As you know, no two of us are alike or react to the same treatment alike, but I will have you in my prayers for the best possible results.

I am 2.5 years post treatment for Stage3b anal cancer. Because of the size and placement of my tumor I did have a colostomy prior to treatment. The hope was for it to be reversed 6months after, but unfortunately the radiation damage to the sphincter is so bad that although the reversal itself may go well, the chance that I would have control is not there. It took time, but I am completely adjusted to the ostomy now. I do everything I did prior and have learned a great deal about how to manage this part of my life through education and support groups. It is not nearly as bad as the images I had in my head before. If given the choice, sure I wish it wasn't there, but on the plus side.....I am spared any pain, bleeding, discomfort in the anal area that many others deal with after treatment. Since the plan was to reverse, I did not have the rectum/anus removed......its just out of commision now!

Anyway, I hope the very best for you, keep us posted!

kihonkumite said:

Fleet Enema/Question/Time sensitive

Hi all,

I was instructed by the surgeon to use a Fleet enema the night before I see him. Well, that's not really the issue. The issue is once I start "going" how long will I be "going for? I have to get in the car to get to the office. I mean really, am i going to be defecating my pants on the way? Should I wear double underware? Yikes, this is such a drag and I'm so embarassed but there's nothing about this in the instructions.

As always, thanks for your input and help.

 

K

I've never had to use one of those, so I can't answer your questions.  However, I just want to wish you all the best with your appt.

kihonkumite said:

Fleet Enema/Question/Time sensitive

Hi all,

I was instructed by the surgeon to use a Fleet enema the night before I see him. Well, that's not really the issue. The issue is once I start "going" how long will I be "going for? I have to get in the car to get to the office. I mean really, am i going to be defecating my pants on the way? Should I wear double underware? Yikes, this is such a drag and I'm so embarassed but there's nothing about this in the instructions.

As always, thanks for your input and help.

 

K

I am also advised by MSK to do enemas before I go for a biopsy, as a matter of fact they have me do 2, I do them as soon as I get up and make sure I have about an hour and a half before I have to leave the house since my trip could be anywhere from 1-2 hours depending on traffiic, luckily it has always been ok, they tend to be fast acting, please keep us posted on your case

eihtak said:

kihonkumite.....

Hi, I hope you get the answers you seek with another opinion. As you know, no two of us are alike or react to the same treatment alike, but I will have you in my prayers for the best possible results.

I am 2.5 years post treatment for Stage3b anal cancer. Because of the size and placement of my tumor I did have a colostomy prior to treatment. The hope was for it to be reversed 6months after, but unfortunately the radiation damage to the sphincter is so bad that although the reversal itself may go well, the chance that I would have control is not there. It took time, but I am completely adjusted to the ostomy now. I do everything I did prior and have learned a great deal about how to manage this part of my life through education and support groups. It is not nearly as bad as the images I had in my head before. If given the choice, sure I wish it wasn't there, but on the plus side.....I am spared any pain, bleeding, discomfort in the anal area that many others deal with after treatment. Since the plan was to reverse, I did not have the rectum/anus removed......its just out of commision now!

Anyway, I hope the very best for you, keep us posted!

I'm so terrified of the bag but as you say, it's probably not as terrible as I think it is. I'm trying to be hopeful but I am realistic and know that it's in my future. Not looking forward to the next surgery. Right now, just sitting on my donut and keeping positive. Your post is incredibly helpful to me and I thank you so much.

I'll be in touch and updating.

Best to you too!

K

lizdeli said:

was diagonised with 2.6 cm
was diagonised with 2.6 cm tumor on my anus and PT and CT scan showed a faint spot on the rectal lymph node. I went to MD Anderson Cancer Center in Houston and spent 7 weeks there being treated with 27 radiation treatments, chemo pack via cathither in my arm M - F and weekly IV treatment of cisplatin. Tomorrow will be one week that we've been home. I was prepared for the worse regarding the treatments. All in all it wasn't terrible. I didn't vomit at all. Had some days when I was very queasy and some days when everything I ate stayed in me for a 15 minutes max. Then I listened to the doctors and took the medicine to control the diaherria. It was better from that point. The radiation got tough toward the end and I came home pretty fried.

But, I am healing rather quickly. Still tired at times, a headache at night. But despite what I expected my bowel movements are almost back to normal. I did have a couple of weeks with an agonizing itch - worse than any other symptom and not much that could be done about it. That too has subsided.

For all of us with anal cancer - we are fortunate we have this type if we have to have a cancer. It is a curable cancer and as most of you know, the chemo/radiation ususally takes care of it. The reoccurrence rate is not high. I thank God everyday for that. To be told we have a curable cancer is a gift.

My doctors at MD Anderson are awesome. Anal cancer is rare and when I was first diagonosed in Denver, I was told it was rectal cancer. When I got to MD Anderson, they ran their own tests and it came back as sqaumous cell anal - per my onologist "that's good news". She sees a few cases a week of this type of cancer. Other doctors see, if they do at all, a few cases in their careers. I will be going back in Dec for my tests to see how well the treatment worked. Both my onocologist and radioligist were very optimistic that we will beat it.

So for any newbies going through this, once the shock wears off, please know that we are in a much better position than many others who are battling more difficult forms of cancer.

Good doctors, much prayer and a strong will to overcome the treatment after affects and my will to beat this. That is my recipe.

Please email me if you have any questions of if I can help in anyway.

Hey Lizdeli,

I was recently diagnosed with sqaumous cell anal cancer about 2 weeks ago. I am very fortunate to live in NYC and have access to Sloan Kettering which is where I went

immediately after seeing a few other dr.'s. All 3 have told me that it is in a really bad spot and will more than likely have to remove my rectum and I will have to wear a bag for the rest of my life. I'm 61 and spend a lot of time in the lake in the summer. Of course I'm terrified and am awaiting biopsy results to be sure, but they seem pretty sure about it.

Yes, this is a "curable" one and my pet scan came back localized but i'm not feeling too lucky right now.  i had anal cancer 12 years ago as luck would have it and had just radiation. so they tell me that radiation won't work for me now. i know i'm rambling, but saw your post and was moved by your courage and positive post.

I wish all the best to you and look forward to your reply. BTW, i am still trying to figure out this board so bare with me.

Kind regards,

K