CSN Login
Members Online: 11

Newbie and already grateful.......

Clovergirl
Posts: 47
Joined: Dec 2012

I have been reading posts on here for over an hour and I'm already grateful to have found this site! I was literally diagnosed several hours ago. I had rectal bleeding along with hemmorhoids and constipation. I went to the colorectal surgeon last Monday and she felt something during exam. She had me scheduled for colonoscopy on Friday. Had 2 non cancerous polyps in colon and the bad one that was lower that she felt in the office. Pathology back today and was anal cancer. Dr. said she was shocked... really didn't think was cancer appeared like polyp. (have had non cancerous colon ones before). The crazy thing is I knew it was cancer. I just haven't felt good and can read my body pretty well. Now that I know it's time to fight it. I'm 46 and definitely plan on sticking around!! Everything she told me about treatment is consistent with what I'm reading on here. I will gladly take any advice or tips anyone has to offer. I don't know my stage yet etc..... they are supposed to call me tomorrow to schedule the xrays CT and MRI. Dr. said will prov be mid January for start of treatment. I'm worried about my anxiety level. It's all I can think about. I really don't want to go on anxiety meds. I was also wondering if anyone has had tailbone area pain with this?? Sleeping has been difficult because of the rectal. and tailbone pain. Ihave to take over the counter pain relievers in the middle of the night. Trying not to ask for prescription med at this point. I figure will probably really need it later. I plan on spending a lot of time on here I can tell the support and information are invaluable.

islandgirlculebra's picture
islandgirlculebra
Posts: 135
Joined: Dec 2012

I am so sorry you are going through this. It is so scary and shocking to find this out. As I'm sure you know from reading on this site, there are many, many suvivors of this cancer, at different stages of the disease. Hopefully it's at an early stage - it sounds like it might be - since the Dr. thought it was a polyp....I know it's very hard right now, because you don't have enough information, and you can't stop thinking about it, and won't know where you are until you get all those tests...... As far as the pain, I don't remember tailbone pain exactly. Before I was diagnosed I remember sometimes I would get bad pain in the middle of the night around my anus. I think everyone feels their pain a little differently. Do the over the counter pain relievers help you? If not you may want to ask your Dr. for something if the pain causes you to lose sleep. My heart goes out to you. Please keep in touch.

Marynb
Posts: 1134
Joined: Aug 2012

I am sorry about your diagnosis. I know it can be anxiety producing; that is normal. Unless you have some underlying emotional issues, I would not think yiu should add to your troubles by taking medications. For now, I would start researching where you will get your treatment. All cancer hospitals are not equal in the survival rates. You can go onto US News and Reports hospital ratings and check out the cancer raring section.you want a center with better than expected outcomes. I ended up going out of state, as the hospital where I live was not adequate. It is a rare cancer, so not all doctors are expereinced with this. You need to focus on what questions to ask and make a list.

This cancer has a high survival rate, if caught early. The treatment is doable. Hang in there. Yes, I had tailbone pain for years and went to several doctors and specialists before I was correctly diagnosed. I am more than 1 year post treatment and that pain is gone.

For now, make sure you are eating healthy foods, and sleeping well.

Hang in there!

Clovergirl
Posts: 47
Joined: Dec 2012

Thanks so much. I feel really good about finding this site and I'm already feeling more positive.

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

It is very common to feel anxiety at this point in the process. I did and I was prescribed Ativan which helped. I was totally functional while taking it, it just cut the "edge" off of the anxiety and the panic attacks.

We will all be here for you. Stay strong, you can beat this.
Wishing you well,
Liz

mp327's picture
mp327
Posts: 2875
Joined: Jan 2010

I'm sorry you have a reason to be here, but as you're already learning, it's a great place for support and information. I'm sure you are still shell-shocked from getting this news and you and your doctors still need to get more information before your treatment begins. It's a very anxious time. It took me 6 weeks to get my first treatment from the time of diagnosis and I thought I would lose my mind. I hope you will not have to wait that long to begin treatment. I found that once I got started, I felt better--like I was finally doing something to beat this disease.

The first thing I would recommend to you is going to the website for the National Comprehensive Cancer Network (NCCN.org) and registering so that you can access the most up-to-date treatment guidelines for anal cancer. Print them out, read them, and become familiar with the standard protocol. Take them with you to your initial consultations and put your docs to the test. If they have a treatment plan in mind for you that follows these guidelines, then you should feel pretty good about your docs. But ask them how many cases of anal cancer they have treated in the past. You don't want to be their first! If you feel uncomfortable in any way with the information your doctors give you about your treatment, seek a second opinion. My colorectal doctor told me that protocol is standard and straightforward and can be done anywhere that has the right equipment, such as Intensity Modulated Radiation Therapy (IMRT). I think seeking out hospitals and doctors who are not local is a good idea in cases of advance stage cancer or when there are other underlying circumstances. But on the flip-side, I also think it would be much less stressful to be treated close to home. I was on the fence between a stage 1 and a 2 and was treated right here in my town, which is near a large metropolitan area. My doctors were all excellent and very well-versed in the treatment of anal cancer. It was comforting for me to go through treatment close to home and sleep in my own bed at night. I had such terrible diarrhea, I could not imagine going through that in a strange place. So, that is just my take. But you have not been staged yet, so that may make some decisions for you. Also, if your docs need to, phone consultations can be done with doctors at such places as MD Anderson in Houston, where one of the leading experts in anal cancer is located--Dr. Catherine Eng.

Educate yourself and check out the following websites, along with the one I mentioned above. These websites have some good resources for information on centers that have expertise in treating anal cancer. They may also provide you with good info about getting through treatment with minimal side effects. Of course, those of us here can help you with that also. There is also a very good book titled "Kicking Cancer in the Butt" by Theresa Mayhew.

analcancerfoundation.org
analcancerhelp.info
52shadesofblue.com

You will get through this, as the rest of us have. We are here to help you, support you and encourage you. I am a 4+ year survivor of this disease and my life is as normal as I could ever imagine after going through this treatment. I am very active, having run my very first marathon last April at the age of 58. I could never have imagined that during those 6 weeks in treatment. But I recovered, as will you. Please keep us posted as things progress towards your treatment date. You can do this! I wish you all the very best.

Marynb
Posts: 1134
Joined: Aug 2012

I maintain that when you are dealing with cancer, you get the best medical treatment at a very reputable cancer hospital. I respectfully disagree that you should opt for convenience. Not with cancer. I would suggest that you do your research. Most insurance companies cover out of state treatments if necessary. Many top rated hospitals can help you with lodging during treatment. I started at a local hospital, and soon realized that I needed to be at the best cancer hospital that I could get to.

I have heard many horror stories about treatments at local hospitals which are not top rated for cancer. Severe radiation burns, permanent damage, and even death. Not all equipemnt is the same, not all doctors are experts. In my case, I would be dead if I had not gone to the best cancer hospital I could get to. Long story.

Your life and well being are worth some minor inconvenience if you can get to a hospital with a survival rate of "much better than expected" as opposed to " far less than expected.". This is cancer.

Clovergirl
Posts: 47
Joined: Dec 2012

Funny you should mention the choice of hospital.. I just had this conversation with my sister. I am fortunate to live where we have a top notch hospital system and rated very high in cancer treatment. But is it the best for anal cancer? Is there a better choice? I'm not against traveling for the best care for this cancer.

Marynb
Posts: 1134
Joined: Aug 2012

The first thing to do is research yiur hospital for outcomes. You want a better than expected survival rate, etc. I agree that all things have to be considered. A hospital may be highly rated for some things, but not for others. You will need to check with your insurance company if you are going out of state. Good luck. Some here went to MDA, they are best. I did not go there, but went to another hospital which had a top cancer rating. I started out at a local hospital and my anxiety level was through the roof! If you feel confident, it is going to alleviate a lot of the stress.

mp327's picture
mp327
Posts: 2875
Joined: Jan 2010

I did not mean to imply that someone should choose a facility based primarily on convenience. I simply meant that having treatment close to home definitely has some advantages. People need to go where they are confident that they will get the best care. It requires a little homework and asking lots of questions. I happen to be fortunate in that I live in the outskirts of a large metro area and have access to some of the best healthcare in this country. Not everyone goes to MDA for treatment and some who do do not have good outcomes. Some people also have circumstances that do not make it possible for them to be treated far away from home. All things have to be considered, that's all I was saying.

Angela_K
Posts: 374
Joined: Jan 2011

Totally agree with you, Martha.  People do need to go where THEY are confident they will experience optimal healing, which includes body, mind and spirit. And that can be done at a reputable facility not on the "top ten list." Each person has their own set of circumstances and need to feel good about their path to healing, wherever they may be! 

Blessings and peace to all!

Clovergirl
Posts: 47
Joined: Dec 2012

Where did you have your treatment? I'm scheduled for all of my CTs mri etc.. next week at the Cleveland Clinic. I live in cleve and that is where all my docs are. They are very high rated for cancer but I'm not sure how high for this particular cancer. (I'm looking to see what I can find out). I'm strongly considering a second opinion from MDA or Sloan Kettering.

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

So sorry that the diagnosis was cancer - but anal cancer is treatable, as you can see from the number of people that are posting here. The treatment is not easy, but it's very do-able. As far as hospitals, yes, it's very important to be somewhere that has experience with anal cancer. A lot of places aren't, as it's a rare cancer.

If you could ask your doctors if they've had experience in treating anal cancer, that would be great. If they haven't, it might be best to go somewhere where they have. Being close to home is important too though - not just for the convenience, but because it's a reassuring thing and makes the trips a lot less stressful. Best of both worlds would be if there's a hospital or care center close by that's familiar with anal cancer.

You said you're reluctant to take anti-anxiety medication - I was too!!! But it helped so much. Didn't make me loopy or anything, just relieved that doom and gloom feeling. Really helped a lot. My own opinion (not medical or anything) is that when someone NEEDS help from medication, it doesn't cause dependency or anything - it just helps us get through a bad time.

Please keep us informed as to what stage you are.

Rose

StruTanToot
Posts: 108
Joined: Aug 2012

Below is a list of items I put together when I was diagnosed. You will find incredible support on this site. Keep us posted on how you are doing.

undergarments (just in case)
L-glutamine (15 grams twice a day) -- helps with radiation burns
bed pads
thermometer
small plastic trash cans for nausea (I also got a plastic container with a lid to have in the car just in case)
ice packs (I did not need)
biotene mouthwash, toothpaste, gum
Dermoplast - spray to ease pain
Aquaphor
oatmeal baths
lip balm
Imodium (just in case)
zyrtec - a lifesaver for me...totally stopped the itching.
protein drinks (Premier are the lowest price for highest amount of protein)
ice/popsicles
ginger tea (for nausea)
Ginger Ale
Water, water, water

To prevent mouth sores:
• eat/suck on ice starting 15 minutes before your chemo infusion. The coldness prevents the chemo from damaging the mouth. This really works!
• Also, gargle several times a day with a mixture of salt and baking soda. This will also help prevent mouth sores.

Clovergirl
Posts: 47
Joined: Dec 2012

Is Dermoplast a presc or OTC??

AZANNIE
Posts: 375
Joined: Mar 2011

I think it's OTC. Wish I had known about it when I was going through treatment.

Ann

 

Jo Joy
Posts: 39
Joined: Oct 2012

It didn't really work so well for me. Tried to use around 4th week of radiation and it really stung. If I hadn't been at work at the time, I would have screamed out loud. 

EricL
Posts: 3
Joined: Dec 2012

sorry to hear about your results clovergirl.  I also recently was diagnosed with anal cancer yesterday and have x ray and Ct scan set up.  I am unable to locate a specialist Oncologist that specializes in this issue.  my diagnosis is  'infiltrating  squamous cell carcinoma".  i would apprecaite any help.  thank you.

mp327's picture
mp327
Posts: 2875
Joined: Jan 2010

I'm so sorry your diagnosis has landed you here.  I hope that your upcoming scan will show that your tumor is localized and only the minimum of treatment will be necessary.  My oncologist was not a specialist, per se, in treating anal cancer.  However, he had done his homework and was very knowledgeable about staging, treatment, etc.  I had both an excellent oncologist and radiation oncologist.  If you are seeking treatment from a facility that has lots of experience with anal cancer, MD Anderson in Houston would be a good choice.  Several of our members received treatment there and are doing well.  I don't know where you're located, but Univ. of California/San Francisco also has well-known specialists in this field.  Take a look at Memorial Sloan Kettering also. 

 

Treatment protocol is standard, as outlined in the NCCN guidelines--National Comprehensive Cancer Network--NCCN.org.  Register on their site and you'll have access to the latest treatment guidelines.  Wherever you end up receiving treatment, make sure your doctors are familiar with this information. 

 

Please keep us posted on how things go with the scan.  I wish you the best and hope you'll let us support you during this journey. 

EricL
Posts: 3
Joined: Dec 2012

Everything is localized.  No spreading.  Starting chemo/radiation this afternoon 1/15/13.  I went to University of Chicago who is also rated high and spoke to an oncologist i found who specializes in anal cancer and he confirmed that they would do exactly the same as my first opinion with the exact same drugs.  I have found that for at least anal cancer, the treatment is pretty generic in terms of amount of radiation and chemo drugs as long as you go to a qualified place.

mp327's picture
mp327
Posts: 2875
Joined: Jan 2010

That is very good news about your tumor being localized.  I'm glad you have found a good hospital and oncologist--may you be in good hands.  I hope all goes well today for you.  Day one is always a little scary, but I'm sure you'll do fine.  Please let us know how it goes.

Marynb
Posts: 1134
Joined: Aug 2012

Good luck! You are in my thoughts and prayers today?

Clovergirl
Posts: 47
Joined: Dec 2012

You are only a tad behind me in diagnosis. I am very recently dianosed but I can say that I'm educating myself and gathering a lot of great and important information. (Most has come fr om this site and the wonderful people on here. I had incredible panic and anxiety but have since calmed waaaay down. (No medication involved). Things are moving very quickly for me (glad). I had a CT with contrast on Wed a.m. My colorectal surgeon called that evening that scan showed no mestases to other organs. MRI day after New Years and that Friday morning consults with both Oncologists and according to my surgeon could start treatment Mon Jan 7. All this is at the Cleveland Clinic which is 15 mins from home for me. However I can tell you this.....as anxious as I am and more than ready to get going with the treatment I have already firmly decided that I will be going to either MDAnderson or Mem Sloan Kettering for a second opinion. I just want to be sure of my choice. Hang in there and keep talking to the people on here.

Marynb
Posts: 1134
Joined: Aug 2012

Hi clovergirl and EricL,

I just want to tell you the 2012 ratings for hospitals for cancer treatments.

1. MD Andersen
2. Memorial Sloan Kettering
3. Johns Hopkins
4. Mayo Clinic
5. Dana Farber
6. Cleveland Clinic
7. Mass General Hospital

Also, for anal cancer some top research comes out of University of California San Fransisco.

You can't go wrong with any of these hospitals for treatment. Good luck.

Angela_K
Posts: 374
Joined: Jan 2011

. . .there are many more medical facilities out there that have highly regarded cancer treatment centers experienced in treating anal cancer and a number of us on this Board have been treated by them and have experienced outstanding outcomes.

Blessings!

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