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sandysp's picture
sandysp
Posts: 748
Joined: May 2011

Hi,
I've been diagnosed with Anal cancer, with a tumor that goes up my rectum to the colon - about the size of a cigarette. That was from biopsies taken after colonoscopy. CT Scan reveals some ovarian cysts also but that's about it. All reports have been sent to Sloan Kettering and I'm waiting to hear about an appointment. Any thoughts anyone? Do you remember when you were at this point? My husband and I seem to be closer. I have been uncomfortable for a long time.

z's picture
z
Posts: 1251
Joined: May 2009

Hello Sandy,Sorry you had to find us. Yes I remember this point when the gp told me he was 95% sure it was anal cancer. I also had the colonoscopy and biopsy that confrmed Stage 1 squamous cell anal cancer. I completed treatment 6-30-09, and so far so good. Please know that this is a curable cancer. I had the standard nigro (dr who found) the treatment that works. Sloan is a great hospital so it sounds like you will be in good hands. Please keep us posted. I know its scary, but you can do this. There are a lot of survivors here to help support you along the way. Lori

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

How did you find out what stage you are? Was it on the Biopsy report? I only heard from the doctor the biopsy is Squamous cell cancer. I haven't seen the report and don't know if the staging is on there. He just told me to call Sloan.

melbas2
Posts: 108
Joined: Aug 2010

They told me when they told me my diagonis. I would call my doc and ask him. It is curable, it is also very painful and so many changes take place in your body, but having a positive attitude and learning all u can about what to expect makes a huge difference. Make sure your husband reads up on it also. You will be relying on him alot. Good luck!!! Mellodie

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

I'm sorry your circumstances have brought you here, but you'll get lots of support and information here. I know you are in the beginning of this journey and it's overwhelming and scary. However, the treatment for this cancer is very successful--not fun to go through, but usually only for 6 weeks, so it's relatively short compared to other cancer treatments. Many of us have been there done that and we are here to help you get through it too. Please come here whenever you have questions or need to vent. We will listen and help in any way we can. I wish you all the best and hope you'll keep us posted as your journey progresses. You will get through this!

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

I love your picture. You look like you are very vital right now. God Bless you. I am doing Tai Chi. Had to stop my favorite exercise, spinning because of the radiating pain down back and legs. Thought it was Fibromyalgia and took 300 miligrams of Lyrica but still could not bike. Oh wouldn't it be great to be all well!

nellie67
Posts: 26
Joined: Jul 2010

Hi Sandy
I clearly remember being where you are right now. When I first got diagnosed I had been in alot of pain for about 6 months. I was taking 9 advil a day and still miserable, had 2 misdiagnoses, thought I had a hemmorhoid. Anyways after I found out I had cancer I was very frightened and the waiting for appointments made me feel edgy. I was scared and thats very normal, I was very fortunate to find this website as you are too. I really find comfort here and being among other ppl who have had this kind of cancer. Just remember its a curable cancer and in the end you will be a warrior, proally stronger than you have ever been. I won't lie and tell you it wasnt painful because there was a few weeks that I hurt and was very uncomfortable but one good thing the original pain I had from the cancer went away about 2 weeks into the treatment. After that it was the treatment that was painful but it really wasnt that bad until the last week and a few weeks later. I had 5 weeks of chemo and radiation, Im 8 months out of treatment and I feel good. Its funny I really didnt think I would ever feel this good again especially when I look back at the misery I was in before I even knew I had cancer. Then after being diagnosed with cancer I just figured I was a done deal. How wrong I was, so dont fret too much if you can help it, just know in time you will heal and this will be past you.

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

Thank you so much for your reply. I have been in pain a very long time. Three Hundred Miligrams of Lyrica a day for "fibromyalgia". But the pain radiating down my leg may have been from the tumor after all. It sure seems possible. Or maybe the fibromyalgia was just my body's way of telling me I had a problem. Surely the hemmoroids felt like I was having a baby from time to time and in general uncomfortable all the time. The doctor couldn't touch the right side of my stomach without me moaning. How long has it been since I could sit and rest my hands comfortably on my lap???? So it is very hopeful to hear you felt better before you felt worse before you felt better:-) Thank you again.

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

I so appreciate your support. I feel very lucky to have found this discussion board.

All the best,
Sandy

mxperry220
Posts: 357
Joined: Mar 2011

Sandy,
For me waiting for all the tests to come back was worse than the actual tratment mentally. Once the treatments started I treated them as my job which was to be cured of this awful cancer. Keep a postitive outlook. My chemo doctor told me if I had to have cancer this was the one to have. It has a very high cure rate.

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

Thank you so much. It really helps to have this site to go to.

The CT scan found some cysts on the ovaries too, so that is a bit of a side line also right now. But my mother had benign cysts and had them removed. Looks like I am in for a bit of an over hall.

Thank God I live not too far from Sloan although the commute is ghastly.

I will treat this as my job. Thank you for your support. It is really helpful to know I am not alone I felt so alone when first diagnosed. How long ago and how far along was your event? Was your tumor as large as mine? Is the staging on the Biopsy report? I haven't seen that.

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

First let me thank you for complimenting me. That pic was taken last year at a 10k race I did. I am now closing in on the 3-year post-treatment mark and have remained quite active. I see that you are into physical fitness too. I truly believe that my fitness helped me endure the treatment with no breaks and I'm sure it will work in your favor as well. I was back on my treadmill running (slowly) 10 days after my last radiation treatment. So think positive and know that you will regain your strength and fitness once you get through treatment too! As for finding out your stage, mine was determined partly by my colorectal doc, as she could see the size of my tumor during the biopsy, and also by a PET scan, which shows whether or not there is any cancer that has spread to lymph nodes or other organs. I would encourage you to visit the website for the National Comprehensive Cancer Network (NCCN), register, then pull up the guidelines for treatment of anal cancer. Print those out so you can refer to them and discuss them with your doctor. There's lots of good information there and it will help you understand the staging process and treatment protocol. I would also recommend the website for the Anal Cancer Foundation, where there is also lots of good info. You will see my smiling face on that website!

Please keep us updated as things progress towards your treatment start date. Remember, many of us have gone through this treatment and have come through it with just a few permanent dings and dents and we are thriving. You will join our ranks and everything will be okay!

Martha

mxperry220
Posts: 357
Joined: Mar 2011

I am 28 months post treatment. I was stage 2 cancer. I found this out at the end of my treatment but your chemo/radiation doctors should have this staged at some point. Once you start the treatment process make certain to ask them. There are many stages of this cancer. At first they thought I might be stage 3 because of an enlarged lymph node but my chemo doctor said it could have been enlarged because my colon rectal surgeon removed 1/3 of the tumor. As it turned out they said I was stage 2 meaning the cancer had not spread. The radiation doctor treated the lymph node with radiation as if it was cancer in addition to radiating the tumor. My colon rectal surgeon said my tumor was about the size of an Afrin Nasal Spray bottle. For me the most painful part of the treatment was the removal of 1/3 of the tumor for biopsy. My tumor was located in the inside of the center of the upper crack of my butt. It was very difficult for me to go up and down stairs at home. Luckily I had minor side effects with the radiation and chemo. I did not have any major butt discomfort until the fifth week of radiation. I did not have any blisters like they thought I would have. The radiation doctor said I had healthy skin which healed. I was tired all the time and stayed in bed quite a bit.

I drank Ensure during my treatment process because diaherrea was an issue. I ate ice cream and toasted cheese sandwiches. I really did not feel like putting much solid food on my stomach. I only lost 10 pounds during the treatment process. I wore a sani paid in my underwear because there was some fecal leakage. Make certain to get moist wipes with no alcohol.

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

A colorectal surgeon, friend of a friend advised that this cancer tends to go "poof" with the chemo radiation treatments. Maybe this is just a magic dragon come to help me get my head on straight about what's really important. Thank you for your encouraging words.

nonichol's picture
nonichol
Posts: 114
Joined: Jul 2010

I found out about my cancer about a year ago to this day. I was a bit shocked to find out I was late stage 3. My tumor did go poof! I think the advice to treat it as a job is excellent. If you a hard headed that will come in handy too. I mad myself get up fix my hair, get dressed (sun dresses only), and put on makeup everyday to go to treatment.
Best wishes,
Norma

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

What a cool response! Thank you.

Gulamin
Posts: 132
Joined: Dec 2010

I was diagnosed in November of 2010 and completed my follow up PET scan last week. I am all cleared. It's a scary road but I agree... the treatment is standard which is good because you can jump right into it. And, it's curable. Take good care and keep us posted!

Angela_K
Posts: 370
Joined: Jan 2011

Sandy, I don't like that you have to be here, but am delighted that this site exists to lend support when needed.

For me, the initial diagnosis (following a misdiagnosis) and the wait was the absolute worst of the entire experience.

My cancer was about 5 cm and was egg shaped. My surgeon showed me the image on my CT w/contrast. It was never clear to what my staging was due to 'possible' lymph node involvement (extremely vague lighting toward a lymph node on a PET scan,) which they were going to treat with radiation anyway, so staging became less important to me.

The end result, after finishing treatment in mid January of this year, is that I am clean. I am lucky that I have had very few side effects and am leading an active life. Yoga and Pilates have helped enormously with lower back, leg and hip pain before, during and especially after treatment. Stretching feels soooooo good!

Blogging helped me along and was a healthy outlet for me.

This journey has been a blessing for me in many ways. I am a better person for having had cancer, as strange as that may sound to you right now.

Life is good.

And you, you will get through it! Expect the best and be your own best advocate. Lean on your family and friends. We are here if and when you need us. Bright blessings to you, Sandy.

Angela

duckyann
Posts: 162
Joined: Jun 2009

Hi Sandy,

I am also sorry that you had to look for us but happy that you found us. Like the others said there is much support and information on this site. Please come here often if possible for advice.

My staging came from the PET/CT scan. Although my colorectal and oncologist both told me that it was Stage 2 the scan confirmed it.

I wish you the best through treatments with minimal side effects.

Take care
Nancy

z's picture
z
Posts: 1251
Joined: May 2009

The stage is determined by size and and spread to lymph nodes or organs. Like Martha said the NCCN guidelines will explain the different stages. I was dx as stage 1 by my oncologist after the biopsy, pet scan and dre exam. I wish you well. Lori

patacz
Posts: 64
Joined: Sep 2010

I like your picutre, you look confident and sound so positive and that is a plus for you already. The worse part about this are the symptoms after the treatment, but a small price to pay for getting your health back and get rid of the cancer. I am 8 months post treatment and still dealing with some issues related to the radiation, but overall I feel great and happy to be here, life is good. Like many other people on this forum, this changed my life for the best, it grounded me, it made me a better person. Stay positive and keep the faith, God Bless!

sissy310
Posts: 300
Joined: May 2010

Hello...I'm sorry you are in here with the diagnosis of anal cancer but as you will find, this group and this forum is awesome for helping you get through what needs to be done. You sound like you have a good attitude about it (which is a plus). I was diagnosed a year ago on May 21st. I remember hearing squamous cell cancer and not knowing what it was about. Being a 'googler' I decided to look everything up I could find. The best information I got was from the NCCN guidelines suggested to me by Martha from this group. I was staged at IIIa because my tumor was over 5mm (or cm? I confuse them all the time) and in some lympth nodes. In a few weeks I go for my 9 month scan and so far my scans have been good. While the treatment did not melt harvey (named my tumor so I could have something to yell at) right away, it did melt him down to nothingness after awhile. Hang in there and come in here as often as needed while you go through this. I honestly believe the group here helped me get through my diagnosis, treatment and even now when I have concerns or am scared or just need a *hug* -- oh, and yes, I was uncomfortable for over a year before I was diagnosed because the thought was I had hemmi's. Keep us posted. My thoughts and prayers are with you. Marilyne

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

Hi and thanks. Harvey lol I like that.

Sloan assigned Dr Weiser to me. I see him May 31. I have a very hot burning lower abdomen and pain down my legs. Hoping this will improve after treatments and yes I thought many of my problems were hemmeroids and increased preparation h stock value no doubt. In some ways the diagnosis is a relief although I am not very brave about the upcoming treatments.

So happy HARvey is in your past. I will sleep tonight with a smile.

Thanks again
Sandy

sissy310
Posts: 300
Joined: May 2010

harvey with a small h. He didn't deserve a capital letter. I named him harvey and I believe there was another person who named hers hank. So perhaps the h symbolizes something and we should keep that commonality. I don't know why I picked harvey or why I even gave it a male name. My tumor was a little over 8 cm and part was removed by the surgeon since he thought he was removing hemmi's and this little sucker reared its ugly head - I was left with over 5cm to be treated -- and the treatment zaps the hell out of them. My son drew a picture of harvey for my blog. He's an ugly little sucker. lol. Now he's a pile of dust and ash and living with hank somewhere in Guam and I hope both of them stay there. Your bugger will be with them shortly. :-) Hugs, Marilyne

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

Wow, mine is 10.8 centimeters. You are the first who posted one close to the size of mine. yessss! I would love to see harvey's picture. Good idea no capital letter. I have to pick up my biopsy slides and have them sent to Sloan. My husband went out of town. Was feeling a little blue. You and your post cheered me up. Thanks so much. I feel like I know all you and all these people posting. You are such a comfort:-)

sissy310
Posts: 300
Joined: May 2010

Don't feel blue, although it is easy for me to say right now. Come in here and 'talk' to those of us who have been there and know what you are going through. The picture of harvey my son drew is on my blog (mvhjourney.blogspot.com). If you look on the side there are dates of postings and on one I think it says harvey's picture.

I remember when they told me the size of the tumor (mine also went upwards towards my rectum like a slithering snake - the Pet scan copy I have shows a very very large tumor and even my oncologist and radiologist (after the post treatment scan came back clear) said "we couldn't tell you before but that was a very large tumor...like I didn't know. The chemo and rads melted that sucker down to nothing. I did have some residual after the treatment and with the last scan, they did a biopsy but that came back clear (whew). I go for my 9 month scan in a few weeks. Hang in there, come in here when you feel the need to - for me it was quite often during treatment and the group in here was always there for me, pushing me forward, giving me hope, telling me what to expect...it certainly is a blessing.

Hugs, Marilyne

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

Wow, mine is 10.8 centimeters. You are the first who posted one close to the size of mine. yessss! I would love to see harvey's picture. Good idea no capital letter. I have to pick up my biopsy slides and have them sent to Sloan. My husband went out of town. Was feeling a little blue. You and your post cheered me up. Thanks so much. I feel like I know all you and all these people posting. You are such a comfort:-)

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

Wow, mine is 10.8 centimeters. You are the first who posted one close to the size of mine. yessss! I would love to see harvey's picture. Good idea no capital letter. I have to pick up my biopsy slides and have them sent to Sloan. My husband went out of town. Was feeling a little blue. You and your post cheered me up. Thanks so much. I feel like I know all you and all these people posting. You are such a comfort:-)

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

i love that you named your tumor harvey...At times you need to laugh in the midst of it all....Hugs ...alyse

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

Anyone want to help me name my 10.8cm tumor yet to be zapped?

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

How about Lamar? I've known a couple of men with that name and they were both weak and wimpy. There's no way they could have survived chemo and radiation! :)

z's picture
z
Posts: 1251
Joined: May 2009

I like that name Martha and how weak it sounds. Lori

sissy310
Posts: 300
Joined: May 2010

Lamar is a good one...I like that name. I told one of my friends the name of the tumor harvey and she said 'oh, my dad and brother's names are harvey' and I said do not take offense, I did not know that. It just felt right to name mine harvey. can't please everyone.

Hector might be a good one in keeping with the H theme, although when I think of Hector I think strength - I guess I saw Troy too many times - ...or Horatio...like on tv's CSI miami he can be called simply 'h'

Whatever name is chosen, you will know if it is the right choice - then picture that sucker being obliterated and while in radiation you can do what I did and keep saying "take that harvey, you ^%$#@!D@#$" -- if nothing else, it will make the radiation techs laugh.

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

harvey with a capital was my grandfather's given name, but I still thought it was funny. Lamar is cool. I knew a kid in my class whose name was Lamar though so I don't want to think of him when I think of this. Maybe oz? The great, powerful oz?

patacz
Posts: 64
Joined: Sep 2010

Sandy, I never thought of giving it a name, but now you got me thinking, and laughing at the same time. Have a great weekend!

melbas2
Posts: 108
Joined: Aug 2010

I named mine howard...that is my ex-husband, and he was truly a pain in my ass. LOL Melodie

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

Sorry I'm late to welcome you. Glad you are going to Sloan, I heard good things about them from a fellow anal cancer survivor. My tumor was 2.5 cm. Same thing as others with the lymph nodes...not really sure. They lit up as faint and moderate on PET but were treated anyway with radiation. Because of suspicious lymph nodes I was staged as III. Given the size of your tumor that could be reason for the pain in your leg. It's probably putting pressure on a nerve or muscle or something.

As for the tumor name, I had a name for mine but I can't say it here because I don't want to be kicked off the forum for vulgarity! lol. I'm thinking Wilbur for yours.

Wishing you well and please know the people on this forum are awesome and will be here to support you every step of the way.

By the way, I'm 19 monts post treatment and so far all is well. On my my to MD Anderson for a check up on Tuesday. Just bloodwork and general exam. Next CT scans and other probes that redefine embarrasing are in August.

Liz

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

Have a safe trip to MDA and I hope all goes well with your check-up. Please let us know.

sissy310
Posts: 300
Joined: May 2010

Hmmmmm, Liz, I really like the name Wilbur! Also congrats on 19 months post treatment! Just had to pipe in... hugs, Marilyne

sissy310
Posts: 300
Joined: May 2010

Good one Melodie...I'm sure it was not difficult yelling at that tumor at all. lol

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

Unfortunately, I've had two ex husbands. No wonder I'm sick!

sandysp's picture
sandysp
Posts: 748
Joined: May 2011

Unfortunately, I've had two ex husbands. No wonder I'm sick!

Angela_K
Posts: 370
Joined: Jan 2011

I could never give my tumor a human name for whatever reason. But I did call it a son-of-a-b**** (and even worse)and sometimes during my radiation treatment would calmly talk to it (yes, out loud) and tell it that it was not welcome and to get the hell out of my body.

And it apparently listened! ;~)

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

At first when i was getting radiation I used to count slowly and imagine myself sitting on the beach looking at the ocean.it was about 21-22 seconds on each' side.As the effects of the radiation got worse...I got mad.I cursed that mother #@#$$#$# tumor to get lost!!!!! It worked...33months NED.

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