New here. So scared.

AmyD1310

Hi everyone. My name is Amy and I was just diagnosed with Squamous Cell Carcinoma Anal Cancer. I've been reading some of the posts here and they are helpful, but I'm absolutely terrified roght now. I am only 36 and I have 3 gorgeous babies that I need to live for. I am going for my first CAT scan tomorrow and then I will begin treatment. all I know right now is that my tumor is 3cm. I have been having a strange sensation in my right rib cage over the last 4-5 days and I'm wondering if I am being paranoid or if that means the cancer has spread? Any tips or advice would be welcome since I'm just beginning my journey. Also I welcome any good websites/articles to help get me through this. TIA.

mp327

AmyD1310

I am sorry that you have been diagnosed with anal cancer, giving you a reason to seek out this site.  However, this is a good place for advice, information and support, so I'm glad you have found it.  We will support you and help you in any way we can.

If you need some encouragement, I will tell you briefly my story.  I was diagnosed in 2008 after experiencing some rectal bleeding.  I had the standard protocol of chemo/radiation for a 2cm. anal canal tumor.  Here it is almost 2017 and I am still here and doing quite well, all things considered.  This treatment has a high rate of success, so you have every reason to be hopeful that it will blast out your tumor.

I hope your CT scan will show that the tumor is localized and there is no spread.  As for the sensation in your rib cage, if anything is there, it will be found on the scan.  Hopefully, it is just a heightened sense of awareness, due to anxiety.  Having gone through what you are experiencing right now, I remember being much more aware of every little ache, pain, etc.  Hopefully, anything sinister will be ruled out and you will have some peace of mind in that regard.

I would suggest that you register on the site for the National Comprehensive Cancer Network.  The address is https://www.nccn.org  After a quick registration, you will have access to lots of good information about anal cancer diagnosis, staging, treatment and follow-up.  Print out this information and become familiar with it.  Knowledge is power, so I highly recommend doing this so you can learn as much as possible, allowing you to have very frank discussions with your doctors.

This treatment is relatively short (usually 6 weeks), as compared to treatment for other types of cancer.  While it can be tough going, especially towards the end, you will get through it, just as all the rest of us in this group did.  We are here to help you cross that finish line, so please let us know how we can help you.  Take care and if you can, let us know your scan results and when you will begin treatment.  I wish you all the best--you can do this!

Martha

Mollymaude

Scared

I agree with everything Martha said above. She gave excellent advice and encouragement. I am hoping the feeling in your rib is nothing-anxiety can do weird things. I understand about needing to be around for your children too. You are already ahead of the game finding this website. You can get support and learn about side effects, etc that are not in the "scholarly" articles online. 

Tretment is tough but doable. I am a year out and doing well, no evidence of any cancer left. My cancer was the size of a chicken egg and still had not spread anywhere. Chemo and radiation were all the treatment I took. Life gets better! I am about to go on a cruise with my daughter, my son just did fantastic on his ACT and won a big scholarship to the college he is going to attend next year.

I would suggest taking all the "scared" and chaneling it into "fierce" because you need to get thru this for your kids. Keep us updated, we are thinking about you! 

Mollymaude

P. S.

Here is another good resource:

http://www.analcancerfoundation.org/

AmyD1310

Thank you for the kind words

Thank you for the kind words of encouragement. I'm trying to stay positive, but all the waiting is just making me more anxious. my doctor told me he didn't feel any lymph nodes when he was doing an exam. Can a cancer still spread to distant organs without it spreading to the lymph nodes?

jimdanabree

Amy

I am 4 months post chemo and radiation.  My Tumor was 3 cm. I had surgery to do biopsy/ removal. I thought for years I had a hemorrhoid until it hurt so bad I had to go to the Dr. Turns out anal cancer. After the surgery I did my rounds of chemo and radiation. Just went to the Dr. and had a flex Sig done. He found nothing there. Keep your chin up. Will say a prayer for you.

 

Mollymaude

Cancer spread

I think it is highly unlikely the feeling in your ribs is a metastisis. My oncologist keeps stressing the inguinal lymph node exam, that is the first place it goes to- so the fact that your doctor did not feel any enlargement is great!! Try to do some really fun things with your kids while you feel well before treatment. I was diagnosed last November so knew I would be feeling bad at Christmas. I took the kids out of school for a day and took them out to buy their Christmas presents early. It got my mind off things!! I agree waiting is the hardest part. When you get your CT make sure you find out who is going to call you with results and when, don't be afraid of calling them if they haven't called you. They get busy and forget we are waiting on pins and needles for test results!

AmyD1310

Quick update...I have my scan

Quick update...I have my scan tomorrow (they couldn't fit me in today). I meet with my oncologist and my radiologist on Thursday and I have surgery to have my chemo port put in on Friday. I'm really nervous about all of this and not quite sure what to expect. I am still utterly terrified about this whole experience, but hoping for the best possible outcome. 

lab guy

Take a deep breath

Amy, I went through this about a year and a half ago. I think whenever the "C" word is used everbody assumes the worst, at least I did. Don't do what I did and live in the world of "what if?" . Of course you are terrified we all were, that is normal. You are now in the hands of profesionals that are trained to treat and cure this. Like Martha said this has a very high success rate. In fact, the very first thing my radiologist said to me was  " Steve I am not going to tell you, you are not going to die, but I will tell you, you are not going to die from this". Honestly,that is the truth. Good luck, hoping for good news! Steve

AmyD1310

Steve

thank you for the encouragement. I'm trying not to think the worst. I have been having a weird twinge in my side and I'm worried the cancer could have spread to my liver or something. Would the success rate still be high if that were the case? What was your particular situation like?

lab guy

Amy, I was misdiagnosed four

Amy, I was misdiagnosed four times by four different doctors. After I was told I had cancer, I was certain  the pain I had between my groin and my leg was cancer that had spread to my lymph nodes.Not true, stage 1 so relax and until they tell you something bad think good. Steve

jcorum

Amy

 

I am 6 years last month, post treatment & have excellent check ups since. My chemo doctor told me before we started that this cancer is highly CURABLE, unlike other cancers and that soon it would just be blip in my past, never to bother me again. He gave me so much comfort! the NOT KNOWING and the WAITING for everything to happen is tough. and real scary. Once you know whats going to happen & move forward, you get in fighting mode , ready to whip its butt!!! One thing I want to warn you about, that none of my doctors told me about, i found out about reading , is vaginal stenosis. You are a young woman. You need to talk to them about that. I dont remember who on this post, but someone posted a couple years ago that their radiation doctor let them put a dildo or something like that in their vagina while having radiation. Sad that you have to thing about this while scared witless. But it took a full year after treatment before I was able to have intercourse because of the damage of the radiation and its still not normal. It shrinks your vagina. Some on here say they havent been able to have intercourse since. When i asked my doctors about it beforehand, they didnt even want to talk to me about it. Said we would handle it later. Pretty much shut me down. I was 50, so not 36 but still didnt want to go the rest of my life not having that experience with my husband. Its a real side affect, and a very lasting one. Its the most problematic side affect I had.

Here is what to expect. All of it is doable.

Mouth sores from the chemo. Not terribly bad but not fun either. They can give you a potion to use in your mouth to help numb it.

Didnt lose all my hair, but it got thin. I wanted to shave it as it thinned and my husband told me i shouldnt. Glad he said not to because i never even had bald spots. Just thinned out.

Everyone is different but i had no naseau with the treatment at all. I literally didnt miss a day of work until the 8th week, when i was over my chemo & radiation & my cell count was down & i caught a virus at work & it put me in the hosptial in isolation for a week because my immune system was so weak. Your immune system WILL get weak. We didnt let the grands come over during my treament because kids carry germs that adults dont carry as easily. The grands ALWAYS have runny noses. I was going thru treatment in oct & nov so thats cold/flu season. I wore a paper mask in the stores, aroung large groups of people. Wouldnt hug people. Opened doors with paper towels, etc. Protect your immune system!

I never had loose bowels like a lot of people on here have had. but its a possibility. My visiting nurse even came to my work to unhook my chemo bag! I went to my radiation treatments 5 minutes from my work, during my lunch hour every day.

I was scared to death before i started treatment. cautiously scared during my first couple years of follow up ct scans and pokes & prods. Every little lump or bump makes you think its back & I have gotten on this site during those times & gotten advice & strength.

The 5th week of radiation, you feel like pulverized flesh "down there". by the 6th & 7th week, its pretty bad. But they will give you pain pills if needed. I was working so i didnt want to use them. PLUS, they can constipate you and pooping is wayyyyyyyyyyyy painful during this time so you dont want to be constipated! i just gritted my teeth when i used the bathroom , either bm OR urinating because toward the end of the radiation, the urine burns your radiated area.

It was a tough couple months but you, like the others on here, will make it thru, thrive on the other end and be around to raise your 3 kiddos & watch THEIR kiddos grow up too!!!

Its ok to be scared but gain strength from those of us who have been there & lived to tell about it!!!

 

jcorum

Amy

Here is a post from this site but another thread about the vaginal stenosis.

Dec 15, 2016 - 8:08 am

If you are just getting started with pelvic radiation treatment and have an IUD I would suggest getting it removed. I was told to just leave mine alone and it has scarred in and can't be found by my gyn. She says it's no big deal but I don't like the idea that it's there and can't be removed. 

AmyD1310

Scan result

Hey everyone! Thank you all for the encouragement and information. I got a call from the on-call Doctor last night (because I had been bugging them all day about my scan results). To my surprise, he was sitting there looking at my scan. He told me that he didn't see any distant metastesis to other organs and that he just saw the original growth (3cm) and a few slightly enlarged lymph nodes right near the growth. I hope that taking this for "good" news is the right response. While no one wants the "c" word I am thanking God that it hasn't moved to other organs. I'm still scared, but I'm trying to arm myself with knowledge about this disease and the process so I can come through it as strong as possible. My paranoia is still getting to me regarding the sensation/occasional ache on my right side, but I made the doctor repeat  "your lungs/liver/kidneys etc...are clear" about 6 times, plus he told me he never would have called me without checking the scan over a few times first.  God Bless all of you for being here go the rest of us. I'm lucky I stumbled upon you all! Hugs!

lab guy

Good for you!!

Good news for your new year. The road ahead will be challenging but we are all here for support.

tanda

Amy

in addition to: http://www.analcancerfoundation.org/

BlogFor a Cure (blogforacure.org) is very helpful..many a.c survivors (and people in treatment) sharing information and support.  You  can take a look at the site and if you are intersted in participating you will be warmly welcomed, or you can just read people's stories, and information.

Glad the scans are clear.  Best wishes as you start your journey.  

mp327

Amy

This is such good news and I am very happy for you.  You will beat this disease.  Focus on getting through treatment now.  We are here to help you in any way possible.  You can do it!