GiGi's Anal Cancer Story - "I believe"
My name is Genevia but affectionally known as GiGi. This is my story of anal cancer diagnosis. For me, finding this site has been a blessing and I want others to know my experience and that they are not alone. I'll update this post as the future unfolds. I appreciate your prayers.
Me:
I'm a happily married 45 year old, caucasian female. My husband and I have a blended family of 6 children and 10 grandchildren. Of our children, I have 2 grown sons, 27 and 23 and one grandson, 6. We live near Nashville TN and I will have all my treatments at Sarah Cannon (that's Minnie Pearls real name) Cancer Center.
How This All Started:
If you've just happened to this site doing some research or newly diagnosed then understand that anal cancer is a cancer where terms like pee and poop are talked about often and openly so prepare yourself to let go of any feelings of embarassment. Life is what matters..not where our cancer is located or the process of treatment or recovery.
So, sometime late 2011, I had started noticing some red streaks in my poo but it was bright red so I wasn't too concerned, knowing a prior colonoscopy showed an internal hemorrhoid. My poo also had what I call a divot in it..as it if was passing by something solid on it's way out. My doctor agreed and basically said to eat more fiber. In early 2012, I started having some discomfort when stool would move into my rectum. Upon telling him about it, he referred me to a gastro doctor who did nothing other than hear my story and again, advised me to eat more fiber. I continued through the summer with increasing red streaks and pain. On August 27, 2012 after hurting all weekend with what felt like bad constipation (through I was going regularly) and bloating, I had a BM where it was totally covered in red, some dark red blood. I knew something had to be done and was honestly quite frightened at what I saw. I went immediately to a walk in clinic and that doctor scheduled me for another colonoscopy. That was Sept 19, 2012. The surgeon told us that it was not a hemmy but instead was likely cancer. I was devastated. That's all he would say other than he had done a biopsy on a tumor of 3cms and it was early and very treatable. On Sept 21, 2012 (two days later) he called me to confirm it was cancer, Squamous Cell Carcinoma Anal. I had a CT that same day which showed nothing else unusual and the multiple doctor scheduling and visits began. Another surgeon on Sept 28 2012. That visit consisted of a digital rectal exam, the intelligent finger exam and conversation about treatment. Likely, chemo and radiation only. Surgery is typically not done unless chemo and rad fail because of the risk of removing the splinter which would result in a coloscopy bag for the rest of my life. Oncologist on Oct 2, 2012. He explained everything..what is squamous cell, the treatment plan, side effects, survial rate (mine is 90% after 5 years). What he didn't explain, I asked from a list on my phone that I'd compiled over the last month. More appointments were scheduled. PET (that's the scan which requires a radioactive IV injection which makes any cancer glow), the radiologist and more oncologist appointments. I was scheduled to start chemo on Oct 22, 2012 but it was delayed because the radiologist wasn't ready yet. They want to start the treatments on the same day. The chemo extensifies the radiation while done at the same time. If it helps, I'm in.
Treatment Plan
My PET showed no spread in lymphnodes or otherwise which if I'm correct makes me a T2NOMO. Chemo is Mitomycin in the oncologist office and then I'll be hooked up to a pump for 96 hours infusion of 5FU (Fluorourial) for week 1 and same chemo repeated in week 5 or 6. 30 treatments (not days) of radiation, done M-F, 5 days a week for 6 weeks. I also had a Bard power port installed for the chemo. I start everything on Oct 29, 2012.
Things to know:
Trust in the Lord - He has the authority over all things and will be your fortress if you believe in Him.
Be informed - equip yourself with information and don't hesitate to ask questions.
Find a doctor that cares and will explain everything.
Know this cancer is curable
Surround yourself with positive minded people
Prepare yourself for friends who will avoid you because they don't know what to say or do. They are scared too.
Prepare yourself for people you hardly know to reach out to you in a way you'd never expect.
Prepare list before treatments. If you're not sure what those are, post your request here and folks will reply because everyone is different and what works for one will not work for others.
Have someone with you during any doctors visit. They say so much that you don't remember everything and that support person can help you later.
Register on this site because there are lots of people here that will help you and guide you through everything.
Emotionally
Cancer is never an easy diagnosis and the helplessness I've felt can be overwhelming at times but not all the time..know that. I've surrounded myself with positive people but honestly that wasn't hard because I live my life that way to begin with. My church family has surrounded me and we've had special prayer for me and my family a couple of times at church. I also know prayer warriors are approaching the throne with my name. For all these things, I'm grateful beyond words. A couple of very dear friends are at my beckoned call (not that I've called) and ready to help me at a moments notice. I may need them later..for housekeeping, meals, doctor visits, etc.
Work:
I work for a great company and we have great benefits. I've taken off work and will be off for about 10-12 weeks. I will then work from home for a while after that. I commute about an hour so until things are healed and under control, I don't plan on making that trip everyday. Again, a great company that I'm so grateful for.
I hope this helps someone searching for information and relieves some stress surrounding anal cancer.
I can't say enough how important my faith is for me during this. The Lord is my Saviour, my provider and my defender. He is or can be the same for you if you believe.
God Bless and I appreciate your prayers.
Comments
-
I believe too!
You sound like you have wonderful family, friends to surround you and help you through this. You are so fortunate to work for a company who cares. I agree with you on faith. Although not all anal cancer is curable (I was diagnosed at stage four so my chance of survival is only 12-18%, although surgeon feels my liver resection should increase my chances 20%). I know prayer from many people, most I don't even know, has kept me alive this far. I was diagnosed in August 2011 and am still in remission! Thank you God!!!!! Since being diagnosed last year, my mother and husband have passed away and I am raising two grandchildren alone. God has carried me through all this and continues to be my provider, my savior. If it weren't for faith and prayers I don't know how I would have survived this last year.0 -
Day 1
Day 1 has been just as doctor described. Arrived with labs first, small talk, pick a chair and sit down. Then the power access needle for the first time. Not fun at all but was quick and passed instantly. Got two meds first, Amend and something else. MIT pushed through then saline. The entire process was about 2 1/2 hours. 5fu strapped around me and off to radiation office across the hall. In quick, lined up with laser precision and 8 minutes of click and rotate. I felt nothing. Then I got my tattoo's. Yes, the permanent kind. 3 small blue dots to line me up with before each treatment. I'm tired but feeling ok overall. No sickness. Dry mouth already using Biotene gel lots of water. That helps. Thanks again for all your prayers
GiGi0 -
Times for MaryMarynb said:Gigi
Stay strong in your faith. Count me as one of your prayer warriors. What time do you have your radiation? I would like to pray for you during that time.
God Bless!
Mary
Thanks Mary. This week they are at 10am then to 245pm next week and forward. Thank you for your prayers. God is able!!0 -
Gigigeneviasue said:Times for Mary
Thanks Mary. This week they are at 10am then to 245pm next week and forward. Thank you for your prayers. God is able!!
I hope that you can feel God's presence healing your body at those times. i will be praying!
God Bless You!
Hugs. Mary0 -
Thanks Everyone & questiongeneviasue said:Day 1
Day 1 has been just as doctor described. Arrived with labs first, small talk, pick a chair and sit down. Then the power access needle for the first time. Not fun at all but was quick and passed instantly. Got two meds first, Amend and something else. MIT pushed through then saline. The entire process was about 2 1/2 hours. 5fu strapped around me and off to radiation office across the hall. In quick, lined up with laser precision and 8 minutes of click and rotate. I felt nothing. Then I got my tattoo's. Yes, the permanent kind. 3 small blue dots to line me up with before each treatment. I'm tired but feeling ok overall. No sickness. Dry mouth already using Biotene gel lots of water. That helps. Thanks again for all your prayers
GiGi
Thanks everyone for your kind words, encouragement and prayers. I'm resting at home with my new fannie pack and lots of water. God is in control.
Quick question. I've noticed this afternoon my skin looks pale. I don't recall any posts about that. Any thoughts? Assuming this is normal for chemo patients just surprised its happened so quickly.0 -
Looking palegeneviasue said:Thanks Everyone & question
Thanks everyone for your kind words, encouragement and prayers. I'm resting at home with my new fannie pack and lots of water. God is in control.
Quick question. I've noticed this afternoon my skin looks pale. I don't recall any posts about that. Any thoughts? Assuming this is normal for chemo patients just surprised its happened so quickly.
Hi Gigi,
I think looking pale is par for the course, but I would ask your doctor what she thinks. Are you eating? As you progress through this, your nutirition will suffer and that could make you look a little pale too. Don't worry, they will keep a close eye on your heart rate and blood levels.
Have a restful night and know that you sleep in the palm of God's hand! All will be well soon!
Mary0 -
Day 1geneviasue said:Day 1
Day 1 has been just as doctor described. Arrived with labs first, small talk, pick a chair and sit down. Then the power access needle for the first time. Not fun at all but was quick and passed instantly. Got two meds first, Amend and something else. MIT pushed through then saline. The entire process was about 2 1/2 hours. 5fu strapped around me and off to radiation office across the hall. In quick, lined up with laser precision and 8 minutes of click and rotate. I felt nothing. Then I got my tattoo's. Yes, the permanent kind. 3 small blue dots to line me up with before each treatment. I'm tired but feeling ok overall. No sickness. Dry mouth already using Biotene gel lots of water. That helps. Thanks again for all your prayers
GiGi
I'm glad your first day was uneventful! As for accessing the port with the needle, if they didn't do this, have them spray the area with numbing spray before the stick. I'm not sure what the stuff is called, but perhaps someone on here will know. Also, you can use lidocaine cream on the port about an hour prior to access, which will numb it up good. You may need to ask for a script for that. That's what I used and it really works!0 -
TYmp327 said:Day 1
I'm glad your first day was uneventful! As for accessing the port with the needle, if they didn't do this, have them spray the area with numbing spray before the stick. I'm not sure what the stuff is called, but perhaps someone on here will know. Also, you can use lidocaine cream on the port about an hour prior to access, which will numb it up good. You may need to ask for a script for that. That's what I used and it really works!
I will remember this I will be getting a port too0 -
Lidocainemp327 said:Day 1
I'm glad your first day was uneventful! As for accessing the port with the needle, if they didn't do this, have them spray the area with numbing spray before the stick. I'm not sure what the stuff is called, but perhaps someone on here will know. Also, you can use lidocaine cream on the port about an hour prior to access, which will numb it up good. You may need to ask for a script for that. That's what I used and it really works!
I'll ask for a prescription for that because they don't use the numbing spray at my onc office any longer. What should I expect the removal Friday to feel like? Any thoughts?
Thanks mp0 -
Lidocainemp327 said:Day 1
I'm glad your first day was uneventful! As for accessing the port with the needle, if they didn't do this, have them spray the area with numbing spray before the stick. I'm not sure what the stuff is called, but perhaps someone on here will know. Also, you can use lidocaine cream on the port about an hour prior to access, which will numb it up good. You may need to ask for a script for that. That's what I used and it really works!
I'll ask for a prescription for that because they don't use the numbing spray at my onc office any longer. What should I expect the removal Friday to feel like? Any thoughts?
Thanks mp0 -
Day 2
Well I learned some things today. Eat when your hungry. I waited until after my shower this morning but in 15 min I was nauseated and light headed. I ate but it took me til lunch to recover . 2nd radiation today. The radiologist added a wet gauze on my lower rump to help with the treatment. I plan on asking more about this tomorrow because the tech said it may cause more burn in that area. This afternoon I've developed a skin rash on my face, neck and chest. I called my oncologist and he said its likely a reaction to the 5fu. Taking Benadryl tonight which has helped but not cleared up totally. I will see my onc in the morning to have it checked out.
Port comment: I was told they are phasing out the numbing spray. Was told it was causing issues but wasn't told what. I'll research that more of course.
Meals: I'm eating good..normal meals. Using Biotene daily for mouth. I had bad dry mouth yesterday..today not so much. Drinking lots of water too.
Sleep: I'm very restless. Lots on my mind I suppose. The black pouch of chemo and IV lines laying all over me doesn't help. Maybe tonight will be better with the Benadryl.
Thanks everyone for your words and wisdom.
Linda..we will travel this road together it appears. I'm praying for you.0 -
Gigigeneviasue said:Day 2
Well I learned some things today. Eat when your hungry. I waited until after my shower this morning but in 15 min I was nauseated and light headed. I ate but it took me til lunch to recover . 2nd radiation today. The radiologist added a wet gauze on my lower rump to help with the treatment. I plan on asking more about this tomorrow because the tech said it may cause more burn in that area. This afternoon I've developed a skin rash on my face, neck and chest. I called my oncologist and he said its likely a reaction to the 5fu. Taking Benadryl tonight which has helped but not cleared up totally. I will see my onc in the morning to have it checked out.
Port comment: I was told they are phasing out the numbing spray. Was told it was causing issues but wasn't told what. I'll research that more of course.
Meals: I'm eating good..normal meals. Using Biotene daily for mouth. I had bad dry mouth yesterday..today not so much. Drinking lots of water too.
Sleep: I'm very restless. Lots on my mind I suppose. The black pouch of chemo and IV lines laying all over me doesn't help. Maybe tonight will be better with the Benadryl.
Thanks everyone for your words and wisdom.
Linda..we will travel this road together it appears. I'm praying for you.
You were in my prayers this am and will be everyday this week at 10 while you are getting radiaton. I don't know why they would put a wet pad.....did not do that with me. Also, I did not have a port, I had a picc line. I was told that the port would have stayed in the entire time of treatments. When I had trouble sleeping during treatment, I imagined myself snuggled up in God's hands and it worked like a charm. I also said the rosary, being a,Catholic. I hope you sleep well. Hang in there!
Hugs.
Mary0 -
It's not a big deal. Just like when you get an IV removed--much less painful than when they put one in. You'll be fine.geneviasue said:Lidocaine
I'll ask for a prescription for that because they don't use the numbing spray at my onc office any longer. What should I expect the removal Friday to feel like? Any thoughts?
Thanks mp0 -
Thanks MPmp327 said:It's not a big deal. Just like when you get an IV removed--much less painful than when they put one in. You'll be fine.
That's good to hear. May have to change from 5fu today due to a skin rash. Then again, I may just stay on Benadryl until Friday. We'll see.
Thank you everyone for your support and prayers. I would have never imagined that one of my greatest support systems during treatment would be people I don't even know. God knows you all and I pray he blesses you for giving of your time to others.0 -
port coming out????geneviasue said:Day 2
Well I learned some things today. Eat when your hungry. I waited until after my shower this morning but in 15 min I was nauseated and light headed. I ate but it took me til lunch to recover . 2nd radiation today. The radiologist added a wet gauze on my lower rump to help with the treatment. I plan on asking more about this tomorrow because the tech said it may cause more burn in that area. This afternoon I've developed a skin rash on my face, neck and chest. I called my oncologist and he said its likely a reaction to the 5fu. Taking Benadryl tonight which has helped but not cleared up totally. I will see my onc in the morning to have it checked out.
Port comment: I was told they are phasing out the numbing spray. Was told it was causing issues but wasn't told what. I'll research that more of course.
Meals: I'm eating good..normal meals. Using Biotene daily for mouth. I had bad dry mouth yesterday..today not so much. Drinking lots of water too.
Sleep: I'm very restless. Lots on my mind I suppose. The black pouch of chemo and IV lines laying all over me doesn't help. Maybe tonight will be better with the Benadryl.
Thanks everyone for your words and wisdom.
Linda..we will travel this road together it appears. I'm praying for you.
is the port coming out or just the chemo bag being unhooked. if this is your first round, they keep the port (or picc line) in for the last round of chemo... good luck ... you can do it.... hugs sephie0
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