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Anal Cancer

Chrisluvsfairies
Posts: 7
Joined: Jan 2009

Hi is anyone out there who is a anal cancer survivor? I just finished Chemo & Radiation in the begining of December. The Dr says my new PET scan shows no cancer so I am so grateful. I still get tired easily and have some "chemo brain" but all in all doing well.

duckyann
Posts: 162
Joined: Jun 2009

Hi I thought I might ask you a couple of questions since you have finished treatments quite a bit before me. Is it normal for slight pain and itching to continue in your anal area 5 or more weeks after treatments? I have been a nervous wreck because of these symptoms. My oncologist was trained at Mem Sloan Kettering and I hear that is one of the most excellent hospitals for cancer.

Thanks

ina2525
Posts: 5
Joined: Jul 2009

Hi,

Three years ago,at age 59, I was diagnosed with early Stage 2 anal cancer. I had been feeling quite fatigued for the previous six months and three months prior to diagnosis, I began to have blood after a bowel movement. I thought it was hemmoroids.

The Gold Standard for treating anal cancer is called the Nigro Protocal (7-8 weeks of pelvic radiation and concurrent chemo, weeks 1 and 4). After the treatments, which were so rough, that towards the end of treatment, I was hospitalized for two weeks, so I could be hydrated, intravenously fed and have low blood counts treated, I had a small anal bump remaining. Both radiation and medical oncologists believed the bump to be scar tissue (all scans were negative), but for good measure, I had the scar tissue removed. It was negative.

I remain cancer free and grateful 24/7 for this miracle. During treatment, another miracle--I stopped cigarette smoking, without any withdrawal symptoms. I was a professional 38 year career smoker! Aside from smoking, my lifestyle had been healthy, but since this daunting experience, I am committed to doing whatever I think I need to do in order to not have a recurrance, or an other type of cancer. To this end, I am trying to digest Paul Pitchford's book, Healing with Whole Foods. He integrates principles of Traditional Chinese Medicine with the modern world. His writings are deep and thought provoking.

I beleive that a wholesome diet and exercise and healthy methods for coping with stress helps repair our immune system (damaged by cancer treatment) and also strenghens our immune system. I had worked out for 12 years prior to diagnosis and since healing from treatment (no mean feat, as many of you know), I've redoubled my gym workouts, learned how to practice yoga and am slowly moving towards a more plant based diet. I continue to take supplements, mostly antioxidents.

Like many who have posted, I have side effects, which I assume are for life: hip joints are stiff (yoga and gym work helps to keep this at bay); mild vaginal stenosis; anal pain on and off and I tend to fatigue easily (compared to my high energy pre-cancer self). However, I do continue to improve in all of these areas and in some ways, have never felt better in my life.

Another useful point of view on cancer (besides Pitchford, above) is in a book called The AntiCancer Diet, by Dr. David Servan-Schreiber. He was briefly mentioned on the TV show Extra! following commentary on Farrah's Story.

Blessings to all of you--those newly diagnosed, in treatment or recovering from treatment. You WILL feel better soon. There is a life after anal cancer. Yes, the treatment is quite difficult, but once I got through it, I felt I could endure most anything.

I was very, very lucky too to have excellant oncologists during and after treatment.

lacer00
Posts: 12
Joined: Jul 2009

Hi

I was diagnosed June 15 through a colonoscopy to see how bad my hemrroids were. Came back with Cancer. I had a CAT Scan the next day. I saw the Oncologist on Monday and Radidation dr on Tues, set up for radiation in wednesday, was suppose to have PET Scan on thursday but that had to be postponed till the next tues because of camera difficulties. They put in my PICC thurs and started Chemo and Radiation on Ju 3 I thought that was very quick. Also in that 2 week time frame I saw and surgeon and he remove a lymph node and it was canerous. I have mouth sores right now and that is the worse side effect so far. I was also given a dilator and was told to use it for 10 minutes 2x a week. I am continuing to wourk my day job which is a desk job. I hope to continue for at least 2 more weeks through the end of the month. The most important part of my job.

Jann Landess
Posts: 3
Joined: Jan 2010

Thanks for the comments on your change of diet and your recommended reading - I will be picking up both books...we are also pursuing the whole living foods plan and doing green juicing as well.

Some of the things that we have found out is that cancer cannot live in an alkaline state...so we are doing all we can to bring the body up to a 8.5 ph until all the cancer is gone (we had a re-occurrence)....and are taking sugars (acid state) out of our diets for now since cancer loves to feed on sugar. After we are through all of this - we will probably go on a 80% raw and 20% other for the rest of our lives...(we have found some great recipes on living whole foods - they taste great, are filling and are very good for the body.

You may want to get the book "Alkalize or Die" (by Broody?)on Amazon - and another great read is Suzanne Somers newest book, "Knockout" Interviews with Doctors Who are Curing Cancer"...where she outlines and interviews with all types of doctors who are using methods in both alternative and conventional therapies for cure and for prevention....a great book for education of what is available to us so that we have choices.

One last thing we have found in our research is the importance of adding plant-based full spectrum enzymes when you get up in the morning on an empty stomach and then also before each meal. Whether you are raw or eating cooked/processed foods - enzymes is the key to a healthy life and body. There is a lot of research on enzymes - I was told about a book by Dr Howell, but have not read or picked it up yet (I have been told the more recent one he has published on enzymes is easier to understand, but there are many others on enzyme therapy, as well).

Hope your life and body is healthy and vibrant and will continue to stay that way,

My Best and My Blessings to You

Jann

teacherofkids
Posts: 14
Joined: Feb 2010

I am interested in you research on foods. Have you read anything on the effects of wine and anal cancer. I read something about sugars in the wine. What things should I avoid to not have a reoccurance. I will definatly get the book you mentioned. I fear anything I put in my body now. Thanks

zjrosenthal
Posts: 45
Joined: Dec 2008

Personally I have not had much pain or itching since about three months post treatment but everyone responds differently. I would recommend speaking with your radiation oncologist if you are concerned about it. Since the cancer I dont let any symptom go without checking it out. My most constant side effect from the radiation is some bowel urgency and occasional incontinence but it is manageable. I also use dialators but didnt start until about 2 months post treatment as it would have been too painful while the burns were healing.

nigella
Posts: 11
Joined: Jun 2009

This site is an invaluable recource for those of us currently being treated or post treatment.
Does anyone know how to combine the multiple anal cancer topics? Any interest if possible?

ketch-letch
Posts: 1
Joined: Aug 2009

I to am a survivor as of two weeks ago. I wish I had found this sight before all the treatment. I was not prepared for all the mouth and bottom sores and pain. What is Chemo head? Has anyone had a change in their eyesight after treatment?

adamstevebutler
Posts: 1
Joined: Aug 2009

Hi I'm new to this. Will start treatment onSept.8th any info is appreciated.

Erin Sullivan Wagner
Posts: 5
Joined: Jun 2009

The treatment is actually not as bad as I had imagined. The chemo has minimal side effects like mouth sores for a few days, but other than the PICC line placement to get the chemo into your body over a 96 hours period, I thought poison entering my body would be worse than it was. Radiation wasn't bad for the first 2-3 weeks. Your skin will probably stay in tact during that time....will get red like a sun burn and be uncomfortable but not bleeding red until the last week or two.
Ask for pain drugs early. Have them check your skin often so that they can give you oitment for when it's very tender. I was told about a compound called Morphine gel that is good for the anus area when the pain is at it's worst. I think you have to call around to find a pharmacy that can make up the compound for you though. I didn't use it because I found out late but heard it was the best.
I'll stay in touch so keep posting as you go through your treatments. We'll help you with any info you need as you go through it.
I'm a year and 5 months out from treatment and all is good. My cancer was stage 1 and I had both 5FU and Mitomycin for chemo and had 25 rounds of IMRT radiation. The last week and a half was the worst along with the week or two following. After that it's just slow going but every week is better than the week before. The radiation doesn't hurt. This is all very scary at the beginning, but you'll find your strength and the fear will change to a healthy respect. We're all here to support you. Stay in touch.

Doskymom
Posts: 4
Joined: Jul 2009

How did you all know what treatment to go with? I have seen 3 Mayo doctors and two others and they've all had different opinions on the best way to treat anal cancer.

Gemlady113
Posts: 2
Joined: Aug 2009

I was diagnosed Aug. 6th.: Picc line 2 B done Sept. 8th. Radiation (5 days a week for 6 weeks) chemo: 96 hour pump each week, beginning Sept 15th.
I had endoscopy/colonoscophy Aug 4th, ultrasound Aug 6th. first time I heard the "C" word was during ultrasound (I damn near came off the table!), 2 hours later: CT scan, followed by an appointment with a young agressive oncologist that stayed late to see me, Bless him. He set up appointment with Radiologist closer to my home for Radiation. (travel miles 25 compared to 65) but Oncologist comes up to that center on a regular basis. I INSTINCTIVELY trusted both Docs.
Just getting over double hip replacement (invalid hubby died 2 weeks after 1st. surgery)so this has been a very busy year and a half. Since I live alone, all 5 of my kids are on the East Coast, I am in N. Mn., I rely on my friends....God Bless them too.
Thank you all for info: I will keep up on posts: we learn from each other. What did we do before the Internet?????
Someone answer the ?, plz, what is chemo brain????
Bless you all.

dana789
Posts: 12
Joined: Jul 2009

There's a page on the cancer.org website that talks about chemo brain. If you go to that website and type "chemo brain" in the search box it should come up.

I had trouble with it when I was getting treatment, but it gradually went away and I'm fine now. My last treatment was in early June. Since AC patients ony have 2 rounds of chemo in most cases, it might not affect us as much as some other types of cancer. Here are some of the ways it affected me

- I forgot appointments easily. I normaly have an excellent memory and rely in that more than a calendar, but during treatment I had to use the calendar and refer to it every day
- occasional trouble finding the right word
- driving required more concentration than normal
- problems understanding complex concepts at work
- trouble with math .... and I'm an accountant!!!

Hope this helps. Best of luck to you. I was stage 3A-N1 too.

Dana

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

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.

dasspears
Posts: 233
Joined: Feb 2009

why they seem to be seeing more cases? I first heard this is a rare cancer but it seems to be increasing in frequency. I was Stage 1 and have been NED for 19 months now. MD Anderson is a great facility. Congratulations on completing your treatments!!

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

From what they tell me, it truly is rare. I wonder if people are diagonised with rectal cancer when it could be anal. I was originally diagonised with rectal, but MD Anderson confirmed anal. I also think that people are beginning to talk more openly about it. It is somewhat of an awkward cancer to discuss. I am very open about it, if it can help another person than any embarrassment is worth it. Congrats on your 19 months!

lemorrisg
Posts: 1
Joined: Sep 2009

I was diagnosed in March when the gastroenterologist removed what she thought was a polyp, and two weeks later had an anal resection by a surgeon. The GE doc had gotten all the primary lesion during the colonoscopy but examination of the resected tissue revealed a very tiny patch of cancer cells unattached to the original lesion. I had 25 doses of radiation + a round of 5FU and cisplatin the first week of rads and another round of 5FU and cisplatin the last week of rads. The day after finishing the treatments, I was admitted to the hospital for nine days. The problems were exhaustion, inability to eat and maintain hydration due to mouth and esophogeal lesions, electrolyte imbalance, and second-degree burns to the peri area. Things are healing nicely except for a stubborn adhesion for which I take daily treatments - Domeboro soaks and Aquaphor ointment. However, several weeks after the last chemo round in June, I began having CRPN in my hands and feet. It has gradually worsened until the last week or so but is not going away. Have any of you had this side effect from your chemo? Has it resolved? My oncologist said it will probably resolve but very slowly.

yodice600
Posts: 6
Joined: Jan 2010

Can anyone help!!!!! I am truly scared to death!! I was diagnosed in October with Stage 2 Squamous Cell Carcinoma (Anal Cancer) after having surgery for what I thought were hemeroids.My horrible surgeon decided to try to be the hero and remove all of the tumor instead of biopsy, he never even mentioned that it could be cancer.So after waiting a week for pathology to come back, it came back bad! But now I had to heal from the trauma he put me through with such extensive surgery! I am about to start Chemo and Radiation this Thursday, Jan.7th. Mitomiacin and 5FU at beginning and end of 33 radiation treatments.I have read everyones horror stories with the vaginal narrowing, incontinence, extreme pain, etc. These are all very scary to me as I dont know how I will react. I am a 40 year old female with 3 children ages 18, 12 & 9. I have already been through a serious health scare 2 years ago. I was diagnosed with a very large skull base tumor. Had surgery and Gamma Radiation and all is well with that, thank god!! It was a benign tumor. If anyone has some words of wisdom for me I would really appreciate it!!
THANK YOU,
SCARED TO DEATH IN NEW JERSEY

duckyann
Posts: 162
Joined: Jun 2009

Hi yodice600,

I am 7 months out of treatments for anal cancer. I also was Stage 2 and had 33 radiation treatments along with mitomycin & 5FU 1rst and 5th week of radiation. It is a very rough treatment but doeable. Make sure you take your medications and tell the doctors if anything is bothering you. Go on pain medications if necessary. If there is anything else I can answer for you please let me know.

Jann Landess
Posts: 3
Joined: Jan 2010

My husband had anal cancer last year and went through all the standard main stream treatment coming out with a clean bill of health in Feb 09.....subsequent to that it has returned only to show up in another part of the anal canal. His only option was for removal of the rectum and anal area (radical surgery) and then would be fitted with a colotomy bag...this was not an option that we choose to pursue at this time...so we have begun our search in the alternative world. There is a ton of info about treatments that CURE and/or help to maintain the cancer status for life as if in manageing diabetes. Be sure and check ALL YOUR OPTIONS because you do have many of them to choose from....

An excellent book to pick up that will get you informed about what your options may be is Suzanne Somers new book, "KNOCKOUT", where she interviews many doctors from all methodologies and wants to educate you and I about what is available and why it is that we are not getting better at cancer solutions. It is a MUST READ if you are at all interest in better health for yourself and those you care about.

If we had to do it all over again - we would have never done chemo and radiation to begin with - we would have looked outside the box for alternatives in the first place.

We are now pursuing a juicing and all raw food diet and are feeling terrific on that regime. We have learned that the cancer cannot live in an alkaline state (8.5 ph and above)...and that cancer loves feeding on the sugars that are in our bodies (acid state)...so our route for now is to drink these great tasting and satisfying juices and eat raw "living foods" until the cancer is gone...then we will continue that path but not quite so strict...Our diet for a healthy and long life will remain one with of lots of fruits and vegatables (at least 80% - 85%) and the other 15% - 20% we will be making the healthy choices as well. (ie: fish and maybe free-range chicken) - and I am sure that an occasional "spurge" every so often cannot not be all bad.

We are also meeting with many doctors who have alternative treatments available...tho we have not chosen one particular direction yet we will be making that decision in the very near future. We feel extremely postive about our new path through all the research we have done, the people we have met who have taken similar routes with great success and through asking for devine guidance through prayer.

My best to you in your quest to find answers that work for you.

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

I know you are scared...and you have a right to be scared.I finished treatment 17months ago and am doing well.I had 31 radiation treatments and two rounds of chemo. Insist on a pic line.It is not necessary to get a port.The worst part of the treatment was the burning and itching.(in vagina and anus)I'm not going to lie...the treatment is brutal.You will be very weak.Drink ALOT of water because you will get dehydrated.When I drank more,I felt better...stronger.Also the water neutralizes your urine in case you have burning.Use the aquaphor religiliously.The skin will break down and it helps.I'm told this is very curable...I pray every day that I am one of the lucky ones.When I used to go for radiation (the whole thing is 40 seconds) I used to try and focus in my mind killing that freaking tumor.Good Luck to you.If you need anything I'm here.

patrice58
Posts: 1
Joined: Oct 2013

Hi,

I've been newly diagnosed  with anal cancer as of 9/26l I wondered if your insurance  paid for you to go to MD Anderson. I live in Ca. and I'm not sure where the best treatement centers are here. I know that it's important to have a great medical team. I'm overwhelmed by all of the side effects people are talking about, however I can see that it's different for each person. Thanks for sharing your story.

Patti

mp327's picture
mp327
Posts: 2891
Joined: Jan 2010

I think we've met on another site, but I'm glad you have found this one too--there's great support here.  As for the best treatment centers, I would say that MDA is right up there.  Also, Memorial Sloan Kettering in New York City and University of California/San Francisco.  Since you are in California, I would urge you to check out their website and search for anal cancer.  There are some top-notch physicians there, one being Dr. Berry.  I know 3 people who have had him as their physician and all sing his praises.  Dr. Joel Palefsky is also located there and is a specialist in the treatment of anal cancer.  They have a very good team there, so it's worth checking out.  I have provided a link to their website for you.

http://id.medicine.ucsf.edu/analcancerinfo/

As for side effects, there can be many or few, depending on the individual.  Collectively, those of us on this site have probably experienced all of them.  Therefore, if you have questions about specific side effects, please ask--someone has most likely dealt with them.  We are here to help you and nothing is off limits that pertains to anal cancer, so just ask.  This site is a valuable resource that I wish I had had access to when I was undergoing treatment.  I realize how much easier my treatment time would have been if I had been able to speak with others who had already been through it.

I hope you'll keep us posted as things progress towards the start of your treatment.  I wish you all the very best.  You will get through this!

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

Contrary to popular belief, most insurance companies are happy to pay for the hospitals with the best outcomes.

M. D. Anderson would be a great choice for you.

Don't worry about the side affects right now. The worst of them are much better than the cancer, which you should really try to get the best practicioners in the country to work on. It's such a rare cancer. It pays to go somewhere where they see it from all over the country and even the world.

I so hope you can pull off.

Maybe other people can tell you a good cancer center near you in California, but still, if I were you, I'd sell stuff to go to Texas if I had to.

Good luck and please keep us posted.

Sincerely,

Sandy

 

 

 

kihonkumite
Posts: 14
Joined: Oct 2013

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

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

I just finished treatment. 27 rounds of radiation, 6 weeks of chemo plus weekly IV of cisplatin. First several weeks not too bad. Take the nausea pills they give you. I never vomited. Queasy at times and fatigued. I rinsed my mouth with warm water and baking soda and was able to avoid mouth sores. A also put Abriva on my lips and didn't have any cold sores. Once I passed the midway point, the diaherria set in. Then I listened to my doctors and took the meds to control it and it was under control. I finished treatment on 9/11 and honestly things are healing pretty well. I did have an agonizing itch for a while, can't say anything helped that. I think pray was the only thing that helped. My external burns are healing well, don't know what the inside burns look like but all in all I'm not in any pain and my "movements" are almost normal.

I can't taste too many things. Still have a metal like taste in my mouth. Gingerale is the only thing that tastes right to me. Let me know if I can answer any questions, I'd be happy too. Good luck to you, stay strong, use mind over matter as much as you can.
Liz

hellohello
Posts: 1
Joined: Jan 2010

I'm a 50 year old female with anal cancer - Stage III and the size of a ping pong ball. Have completed 2 weeks of chemo and radiation. I had rectal bleeding one year ago and asked for a colonoscopy. They said because i had a colonoscopy 2 years ago (3 polyps removed) and 3 years before that time (2 polyps) - the dr said it must be hemorrhoids. Now one year later its cancer. What is the real survival rate. I'm terrified.

geotina's picture
geotina
Posts: 2055
Joined: Oct 2009

There is a new discussion board directly for "Anal Cancer". It just started 1/25/10. Hopefully, everyone diagnosed with anal cancer will find a home there. Thanks.

GypsyLaura's picture
GypsyLaura
Posts: 2
Joined: Aug 2012

I am 52. I was told I had a hemmorrhoids for over a year and told I was making a big deal out of it. I went for a second opinion after a year of going to this internist and told I had rectal cancer, stage 3 with lymph node invasion and I had to have a colostomy with chemo being used everyday for 9 months and radiation for 6 weeks.
Sounds like we were both misdiagnosed.
Please do not listen to survival rate. I was given 30% chance of making it three years. That was in 1998.
A big hug from me to you. Kick its butt hon!

BeaRose's picture
BeaRose
Posts: 45
Joined: Jul 2011

I am also a survivor. I finished treatments for third stage tumor at the end of Oct. 2010. I went back to work as a welder, in Feb. Four 8 hr. days for a few weeks, then 4 10's after. I am currently working 50 to 60 hrs a week now. I have been able to slowly resume riding my horse. It is still painful as my groin muscles are very tight but, after a few minutes they loosen up and it gets better. Unfortunately the chemo brain still rears it's ugly head on occasion. I am still having problems with uncontrollable diarrhea, and am awaiting surgery to repair a fistula some time in Sept. My surgeon said to enjoy my summer and let my bottom heal a little more first.

nlada
Posts: 3
Joined: Jun 2012

Hello everyone! I'm probably a grandmother to everyone here fighting anal cancer. I was diagnoised in '99 with stage two bordering on stage 3. In those days it was almost impossible to find information online about this cancer. Mine was squamous cell carinoma and I was supposed to have to courses of chemo of 5 FU and Mitomyicin C along with 28 external radiation treatments with the possibility of several extra boosters at the end. Things did not go well. I developed problems which caused them to suspend treatment while I healed and then the decision was made not to do the second course of chemo because " the benefit I would get from it would not outweigh the risk" I finished up my radiation and received 5 boosters directly to the spot where the tumor had been. The long and short of it was I was clear of the cancer but soon realized that a lot of radiation damage had been done to my intestines, rectal, anal and pelvic tissue. I had diarreha 24/7 and fecal incontinance. After trying many medications was put on codiene and lomotil. This controlled the problems about 80% and gave me some life back. It was an uneasy truce till 3 years ago. At that time I developed an open ulcerate would in my pelvic region. It turned out that along with damage to the skin there, my pubic bone had received radiation damage too and had developed osteomylitis(bone infection). I ended up having two major painful surgery to clean everything up and then to move a flap of skin and muscle from my abdomen to the pelvic area to replace what they had to remove. I learned the hard why it is not also over with. In the last few months my already damaged anal tissue has been getting worse and I have now developed an ulcerated would at the anal verge.I'm waiting for the results of a biopsy.Thank your lucky stars that you didn't get this back then when they knew so little about it.

GypsyLaura's picture
GypsyLaura
Posts: 2
Joined: Aug 2012

I am so glad I found this site. I have never been properly followed up and am experiencing numerous problems now. I was never told of side effects or what to expect since I had stage 3 with lymph node invasion. I think they really believed what they told me (30 % chance of making it 3 years). My rectum (or where it once was) is burning and hurting so bad. My bladder always feels on fire. Every one I have gone to doesn't know who to send me to. My feet are swollen and sore and now walking is getting harder. If anyone can tell me who to see to do follow up I would love it.

sandysp's picture
sandysp
Posts: 782
Joined: May 2011

Congratulations on finishing treatment.

For me it took a long time to get beyond pain and fatigue, at least it seemed so at the time.

I am two years post tx and beginning to feel better than I have in many years, even though I have had set backs.

Try to keep moving. IT really helps and when you aren't moving, try to catch up on good resting. I've been resting and exercising more than anything else this year and I am thinking how lucky I feel to be able to move so much better than a year ago.

Good luck. I am 63 and feel like I am 40 from keeping fit now matter what.

Sincerely,

Sandy

 

kihonkumite
Posts: 14
Joined: Oct 2013

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

Fairenuff
Posts: 2
Joined: Sep 2013

I was diagnosed in April this year and was told the same thing was possible but I asked to do nonsurgical treatment first.  What could it hurt?  My tumor encompassed nearly the entire anal canal.  I underwent chemo and radiation and PRAISE GOD!! got a clean PET scan in September.  It would appear my cancer was treated well by the chemo and radiation.  I was a Stage IIIb.  Please keep the faith and don't be afraid to ask questions.  Doctors are only human and they aren't the ones who have to live with the decision.  It's possible that you have extenuating factors that I did not and your cancer may be affecting the rectum as well as the anal canal and maybe what worked for me won't work for you but surgery is so final.  Be sure before you sign the consent.

kihonkumite
Posts: 14
Joined: Oct 2013

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

pializ
Posts: 258
Joined: Nov 2012

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
Posts: 14
Joined: Oct 2013

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

eihtak
Posts: 835
Joined: Oct 2011

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
Posts: 14
Joined: Oct 2013

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

kihonkumite
Posts: 14
Joined: Oct 2013

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

mp327's picture
mp327
Posts: 2891
Joined: Jan 2010

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.

sephie's picture
sephie
Posts: 523
Joined: Apr 2009

with one fleet night before, it should finish that nite....   sephie

qv62
Posts: 264
Joined: Nov 2012

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

kihonkumite
Posts: 14
Joined: Oct 2013

Dr at Sloan opened me up and did a biopsy. They said it went well and I should know results in a few days. My Pet scan was good and the cancer is localized. That's about all I know now. I'm home and uncomfortable. Sitting on the donut and watching tv. I actually got outside today and took my dog for a short walk. So, feeling a lot better

and hopeful.

k

qv62
Posts: 264
Joined: Nov 2012

glad to hear all went well, keep us posted, I was there yesterday for a biopsy, home resting and waiting on pathology. Hope you are well

 

mp327's picture
mp327
Posts: 2891
Joined: Jan 2010

I'm so glad your surgery went well.  It sounds like you are in a little discomfort and I hope that will quickly subside.  Please keep us posted when you hear about the biopsy.  I am wishing you the very best.

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