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Anal Cancer
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Feb 03, 2009 - 4:46 pm
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. |
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?
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?
Joined: Aug 2009
Hi I'm new to this. Will start treatment onSept.8th any info is appreciated.
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.
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.
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.
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
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.
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!!
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!
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.
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
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.
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.
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.
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
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.
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.
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!
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.
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.
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.