CSN Login
Members Online: 7

Newly diagnosed

pializ
Posts: 258
Joined: Nov 2012

Hi folks. I have recently been diagnosed with anal cancer. Staging not yet complete but I do know it has spread to local lymph nodes & involves the sphincter muscle. Don't think it has gone further. Anyone else had this & if so did you become incontinent of faeces post chemoradiation? I live in UK & so glad I have found this site! Thanks to all contributors in helping those of us suffering this rare cancer..............

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I'm sorry your diagnosis has led you here, but I'm glad you have found us. We will support you through this and I hope you will ask any questions you might have. We'll do our best to answer them. You are obviously very early in this. Once you get staged, you'll know more about the treatment plan. As for incontinence post-treatment, I had a few accidents during the first couple of weeks or so. I found it hard to get to the bathroom in time once in awhile. However, once I recovered, those episodes were rare. I still have some urgency and always scope out the bathrooms wherever I go so I know where they are located. I hope you'll keep us updated on everything as you move towards treatment. You will get through it just like all of us have.

BC331
Posts: 12
Joined: Nov 2012

Welcome to the site. I too have just been diagnosed with Anal Cancer, just waiting for MRI and staging etc. My doctor says its a very treatable cancer and responds well to radiation/chemo. I too am nervous about incontinence from the treatment, however, it seems that many people make it through the treatment and once healed have few problems. I have found this site great for inspiration and guidance. I hope you will too.

sandylicious
Posts: 1
Joined: Nov 2012

I was dianosed about a month ago and have had a ton of tests.
Although it's an unusual type of cancer (we are truly "special") there seems to be a lot of support and knowlegde and a very high (I've been told 85%) cure rate.
I am stge 2 squamous and start my chemo/radiation treatment tomorrow. I'm glad to get going!The sooner we start, the sooner it will be over and we can get back to our normal life with a special appreciation for health and what is important. I am happy to share with anyone anything that can be helpful for them and of course it will be helpful for me to be helpful. Good luck!

geneviasue's picture
geneviasue
Posts: 89
Joined: Oct 2012

Sandy,

I'm sorry to hear about your diagnosis. Understand that you are not alone and that so many people here will help you during your treatments. I'm on day 20 of radiation and my 5th week of chemo is tomorrow. My story is listed as Gigi's Anal Cancer if you would like to read it.

Feel free to post any questions along the way and someone (likely several..lol) will be here for you.

God Bless

Gigi

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I'm sorry you've had to find your way to this site, but I hope you'll find lots of support and information here. I want to wish you all the best with your treatment. May tomorrow go well for you!

pializ
Posts: 258
Joined: Nov 2012

Well Sandy, I am sorry that you too have this 'special' diagnosis. Good to get started with treatment today. 1st day towards cure. And yes, we do take good health for granted don't we? Maybe that's a good thing though. Wouldn't always be good to know what is ahead of us!
Good luck Sandy. Keep us informed of you progess.

Hammah's picture
Hammah
Posts: 4
Joined: Aug 2012

Hi Sandy,

Firstly, I'm sorry that you got diagnosed. That's the bad news. The good news is that I was diagnosed back in Oct 2004 with stage 2 squamous cell and I went through 6 straight weeks of radiation, and 2 weeks of chemo. The chemo was the first week of radiation and the last week of radiation. I was living in Florida at the time and my radiologist told me that I had a 95% chance of being cured. My chemo drugs were 5FU and Mitamisin (sp). One thing I will tell you is you're gonna drink alot of gatorade. It helped replenish the electrolytes. I was finished about the end of Nov early Dec 04 and have been 100% cancer free since. Be strong Sandy and just know that the people in here and yours truely will have you in our thoughts and prayers. I'll check back from time to time to see how your doing.

God Bless!
Hammah

Marynb
Posts: 1134
Joined: Aug 2012

Hi all. I am sorry about your diagnosis. Please do NOT dring Gatorade. It contains brominated vegetable oil? Sounds harmless? Well, it is a flame retardant and is banned in Europe and Japan. The chemical lobby is stronger here and due to a lack of awareness and lack of political will in the USA, it remains in some soft drinks to keep food colorings from separating and floating to the top!

These are some of the things I am learning about diet and cancer. Some say, well, something is going to kill us anyway, so enjoy! I will be darned if I am going to hasten my own death because I have no knowledge.

You will need to hydrate. Drink clean water!

Hammah's picture
Hammah
Posts: 4
Joined: Aug 2012

When I was diagnosed for anal/rectal cancer back in Oct 2004 It was suggested to me to drink either red or blue gatorade during my treatment because it was supposed to replace the electrolites in my system that I lost due to the treatment I was getting. Of course that was back in 2004. It appears to me that they are treating that form of cancer much differently than when I was treated. I had 6 continuous weeks or radiation where they had me lay down in a mold shape of myself so they could point the beams to the exact same area every treatment. I had 2 weeks of chemo as well. first week of radiation they had already put the port on my left chest and I had an infusion pump pumping 5FU and Mitomisin that began my first day of radiation for the week. They repeated that my last week of radiation. my problem was the underdosed me the first week and made up for it the last week by giving me a stronger dose of the chemo drugs. The thing to remember here is that I was treated in Florida at the time. Inspite of the mistakes that they made, I have been cancer free ever since. The area totally regenerated back to normal by the grace of the man upstairs. However, with all that said, it will be a cold day in hell when I ever drink gatorade ever again.

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

At least that's what my physical therapist tells me. It's delicious too. I buy it by the case now at Costco. I find when I am hungry and drink one, suddenly I'm not necessarily hungry at all! What a good thing:-) We need lots of potassium. Especially when going through radiation.

All the best,
Sandy

daisy62
Posts: 7
Joined: Nov 2012

Hi Sandy, sorry to hear about your diagnosis. It has been a crazy 4 months for me. I was diagnosed two days before my 50th B-day, the 27th of September. I went through all the test required, finally was recommended to have a colostomy. I had this surgery on October 12th, I have been recovering very well, getting used to the stoma and the bags. Because I had two lymph nodes in my pelvic area that came back positive I am going in tomorrow for surgery. They removed the two at the same time they did the colostomy, now they are going to remove all of the lymph nodes remaining on my right side. Docs feel after doing all these surgeries and removal of my body parts, I may not have to have any treatments such as chemo or radiation. Just keep up with my test, wish me luck! Good luck to you.

mp327's picture
mp327
Posts: 2889
Joined: Jan 2010

I'm sorry you were not able to have chemo/radiation to treat your cancer and that a colostomy was necessary. I'm glad to hear you are adjusting to the stoma. May your surgery go well today. I hope you'll let us know how you are doing when you're up to it.

pializ
Posts: 258
Joined: Nov 2012

Sorry for your diagnosis! It's a bum deal we've had eh? Whatever the outcome of treatment, it has to be done & we WILL handle it! Stay strong

geneviasue's picture
geneviasue
Posts: 89
Joined: Oct 2012

First of all, I'm sorry about your diagnosis. I am glad though that you've found this site. There are so many people here that will help you before, during and after the treatment of this nasty cancer. I'm in treatment now. Tomorrow will be week 5, second round of 96 hour 5FU and day 20 of radiation. You can see my story at GiGi's Anal Story - I believe if you would like to read it.

Don't hesitate to ask questions here and as you adjust to the discussion, you'll learn we all speak the same lauguage and understand where you are. You are not alone.

God bless

Gigi

pializ
Posts: 258
Joined: Nov 2012

I am so glad to have found this site. Imagine the isolation pre internet days. It's rough isn't it of having this diagnosis. I'm having CT scan today to prepare for treatment. PICC line to be inserted soon too.

How are you coping with treatment? What have you found helpful & what have you had to avoid?

Look forward to getting past this treatment & being able to help others through their treatment!

geneviasue's picture
geneviasue
Posts: 89
Joined: Oct 2012

I'm in week 5 which is chemo week. I'm on the standard protocol so my drugs are Mitromycin and 5FU for 96 hours with a pump. That comes off tomorrow and I'm done with chemo!! Week 1 I had nausea and a skin rash but nothing major. This chemo week I've had less rash and almost no nausea but seem much more tired and just want to be still. I'm on radiation treatment 23 today and all I'm using is Aquaphor. Genital inflamation and redness is where I'm most affected. Aquaphor is keeping me comfortable though. On a pain scale, I would list it as a 1 most of the time, 3 max until I have to pee which shot it way up BUT my doctor gave me a prescription similar to what you would get during a bladder infection that has a numbing agent in it which takes all that pain away..ALL.
What I would or wouldn't do? I would recommend that you read all recent posts and read all the advice listed here. If I tried to list it I would totallly miss so much..lol. I wouldn't recommend you think the worst. That's what I did and it really scared me. I've learned this is far more doable that I initially expected. And, PRAYER is a must..always

Take care Pializ

God Bless

Gigi

pializ
Posts: 258
Joined: Nov 2012

I am so glad to have found this site. Imagine the isolation pre internet days. It's rough isn't it of having this diagnosis. I'm having CT scan today to prepare for treatment. PICC line to be inserted soon too.

How are you coping with treatment? What have you found helpful & what have you had to avoid?

Look forward to getting past this treatment & being able to help others through their treatment!

pializ
Posts: 258
Joined: Nov 2012

I am so glad to have found this site. Imagine the isolation pre internet days. It's rough isn't it of having this diagnosis. I'm having CT scan today to prepare for treatment. PICC line to be inserted soon too.

How are you coping with treatment? What have you found helpful & what have you had to avoid?

Look forward to getting past this treatment & being able to help others through their treatment!

eihtak
Posts: 835
Joined: Oct 2011

Welcome to all the new people, and sorry you have to be here but you will find help, support,encouragement, and the strength to get through this. We are like family and there for each other 24/7, no appointment needed. On the incontinent issue, I am not much help. My tumor size and placement required that I have a colostomy early on. It was to be reversed, but the radiation has caused more dammage than expected and so is now doubtful (approaching 2yrs post treatment). There is no time frame on that so its always a possibility, but I am managing pretty well now anyhow. There is so much information to absorb in the beginning, so write things down and check in with this site often. I will have you in my thoughts and prayers for smooth treatment and quick recovery.

Phoebesnow
Posts: 447
Joined: Apr 2011

I noticed that u r starting 2nd round of chemo today. I had mitomycin and 5 fu for both rounds of chemo. So has most of the people here. I would question, mine was not going to give but I demanded it and he said ok.

Good luck as u r coming to a close.

Good luck to the newcomers too. I hope your treatment goes smoothly and effectively.

geneviasue's picture
geneviasue
Posts: 89
Joined: Oct 2012

Yes, that's the drugs I have MIT and 96 hours of 5FU. I'm doing the standard protocol. 30 radiations of 180 daily, total 5400.

And, thank you .

God Bless

Gigi

pializ
Posts: 258
Joined: Nov 2012

Well done! Almost there now and doing well! xxx

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network