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GiGi's Anal Cancer Story - "I believe"

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

Hello, October 28, 2012

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.

AZANNIE
Posts: 390
Joined: Mar 2011

Yes, you're on the home stretch! I so remember the burning during urination. I used a squirt bottle filled with water. So glad you don't have burns!!!
Wishing you the best!

Ann

sephie's picture
sephie
Posts: 529
Joined: Apr 2009

gigi if you can do NOT take a break. I was in ICU with multiple IV's in each arm and the radiation team came in and said if I could do it , to let them roll me in and finish the radiation... that it would be best for fighting this horrific cancer. so they rolled me in on the bed and picked me up and placed me on the table with my IV's and all... i only had 3 or 4 left to do. you can do it .... i was burned severely and swollen but here i am today. hugs sephie

sandysp's picture
sandysp
Posts: 811
Joined: May 2011

Hi Gigi

I can't believe I haven't chimed in all this time. I am so amazed at how well you expressed yourself all the way through your anal cancer journey - from day one! God bless you!

I know you are in the roughest time period ( at least it was for me). Hope you breeze through this final run toward full recovery.

All the best,
Sandy

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

I'm still amazed somedays at the overwhelming responces of support. I appreciate you all so much. It's such an encouragement to have friends I don't even know praying for me and giving me all kinds of High 5's.
Friday was my worst day yet. I had gotten constipated during the last week of chemo. I should have taken more softeners but I didn't. I'm much better now and just resting.
I have 6 treatments left and think that I may ask for 3 this week and 3 next week. Just so I have a good break in between.

And yes, this is the toughest part so far and I still have 6 more treatments. Most everything everyone has said about the process is true but I just want newbies to know..it's controllable..it's doable. I expected a burn like when you burn yourself on the stove. That isn't what this is..at least not mine. This is much more of a raw, inflamed feeling. Which for me is the better of the two. Coated with Aquaphor is almost unnoticable when resting.

Well, thanks again everyone.

God Bless

GiGi

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

So glad to hear that you are doing well considering the treatments you are going through. You are on the home stretch. With 6 more radiation treatments to go it sounds like you are doing remarkably well, for which I am so happy. Your attitude is amazing which does help us fight the beast. I did burn severely (my skin was literally black) but I also healed very quickly after the radiation was finished. For me, the internal itch was the absolute worse thing because it was internal I couldn't put any creams or anything on it. I remember punching a wall once or twice because it was so unbearable. Long after treatment someone asked me, "did you try benadryl". Duh....I nor my doctors never thought of it! I had pain meds but they don't work for itching. I wish you continued strength and healing. I am so sorry you have to go through this, but I can tell you are already an inspiration and source of comfort to others who are sadly new to this journey. My wish is that no one will need to come to this forum, but sadly we will continue to have newbies until this disease is conquered. People like yourself and others on this forum are a blessing.
Stay strong!
Hugs,
Liz

Marynb
Posts: 1134
Joined: Aug 2012

Thank God that you are almost finished! I am still praying for you. Soon you will be cqncer free. Do your doctors advise splitting up thhe last 6 treatmets up? If you and tolerate it, I would not give a cancer cell a chance to survive. You have been so strong! Stay in faith and know that God will heal you quickly.

Hugs.

Mary

mp327's picture
mp327
Posts: 2949
Joined: Jan 2010

I'm glad you are able to see the finish line now! I hope you are still doing fairly well at this point. You mentioned possibly taking a short break and splitting up your 6 remaining treatments. I have to agree with Mary in that I would not take a break if you can keep going. You have those cancer cells backed into the corner right now and I would not give a single one of them any chance to make an escape! I was in pretty bad shape when I only had a few treatments left. My rad onc told me I could take a break if I wanted to. I chose not to. I just wanted to get it over with and also felt that it would be my best chance at killing the beast. Stay strong and you can do this!

7243
Posts: 223
Joined: Feb 2011

Gigi ... I've been following your journey and pray this moment you are able to continue to "fight the good fight " these next few days ... Sometimes I don't know how I made it to and through the last few treatments. I could not sit and actually recall I didn't wear panties the last treatments or they were down around my thighs i was so burned, Raw and weapy ... We are honest here!

Do everything you can to NOT take a break unless you have a serious complication like an open wound or fistula. Or your rad Onc says it is best. All the research states breaks not recommended if at all possible!

Strength to you dear girl as you push toward the finish line ... A true race for our lives. You will get there!

If you peer over your shoulder at the journey so far ... See that one set of footprints? He is carrying you so you have the strength to to this hard work right now! I know you Believe!

Big hug!

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

I'm doing okay. The genital burns have progressed which means anything in a moist area is raw. Let me say this though, with Aquaphor I'm ok and can get easy and rest. Im definitely glad I have the bladder med to reduce the pee sting. I now have "tanner" skin in the groin area but still not red there.I have 4 days left with radiation. I'm going to do them without a break as I had thought. I took your thoughts into consideration and figured why delay me kicking cancers butt instead of allowing it to kick mine. A little less appetite this week and I'm really only hunger for healthy things..no junk or sweets. That tells me my body needs nutrition instead of just food.
Thanks everyone for your positive thoughts and keep me in your prayers these last few days and the immediate days after.

Marynb
Posts: 1134
Joined: Aug 2012

Hang in there! You will get through this and cancer in your body will be history! I am so glad that you are doing well. Not much longer! You can do this. You are in my prayers.

Eat lots of protein and drink plenty of water! You may get worse before you get better, but you will heal quickly. Just make sure there is no lotion left on your skin when you go in for radiation.

Hugs.

Mary

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

Hello everyone,

I finished treatments on schedule and without delay. I was never so happy to not have to go the doctors office for a day in my entire life. My burns progressed to where my genitals were a raw, shiny flesh. My doctor confirmed them as 2nd degree burns. The top layer of skin no longer existed. I know that sounds bad but understand it's a gradual process and that you really don't realize it until its gone. I also learned that our bodies secret a clear fluid which aids in healing of burns. Both sides and right inside of my gential area was secreting this fluid. This fluid is sticky and in my case it was causing the fleshy sides to stick together. If you can imagine being all one piece there is what it looked like. I was prying the areas apart 3 or 4 times a day but decided that was causing more irritation so I only did it once a day in an effort to keep them from healing together. I posted this on the website as it was happening and I think only one other person experienced this so I don't think it normal to AC patients. Aquaphor was of little value during this because the fluid caused it not to adhere to that area. My doctor called the burn unit at our hospital and they suggested a product known as Greer's Goo. It's a diaper rash solution and I started applying that. I would NOT use that solution prior to ending treatments because it's almost impossible to get off. I used that for one day then I decided to try good old fashion air. I laid in bed for two days with a fan on me and that did miracles!! It was about day 10 post treatment that I felt like I was moving toward "better". The pee sting stopped on day 11. I also started to notice little white circles in the red layers of skin. Those white dots was new skin forming. I was excited. Those little white spots grew over the next week and now the area appears normal now (day 21 pt).

I also experience a urethrea problem during week 7. I want to share that this could be because I had a bladder tact or lift about 10 years ago. The flesh that we (women) have between the urethrea opening and the vagina is called a vestibule. That little area of skin has collapsed. My doctor said two things might be causing that. One being that my internal skin is still very tight and swollen and that if that area was weak that it may be pulling inward because of the swelling and that is may clear up on its own over the next few weeks. Secondly, it could be a bladder prolapse (collapse) and that I will need surgery to correct that. It's not painful but more weird and I want it to be normal again. I think it would probably effect intercourse as well so yes, I want it fixed!!

I'm 21 days post treatment now and returning to work next week. I'll be able to work from home 80% of my week for a couple of months so that's a good thing considering I commute about an hour. I have a diaper bag of sorts that I carry with me (thanks Joy for that suggestion). It has a change of clothes, an adult diaper, washcloths, bottles of water, paper towels and a trash bag for soiled clothes should I need it. I still have very little time to make it to the restroom when I realize I have to go #2. I've heard this improves over time. I'm not taking any meds at this point..for anything. I eat a fiber filled diet so my stool is formed but soft. I'm still cautious of certain acidic foods and dairy but eat pretty much anything else I want. I do use the Aquaphor when I feel dry but that's it.

For me, late week 7 into week 8 was the hardest but you're done with treatment so you focus on just resting and don't force yourself to do anything but that..rest. Sitz baths help too. I'm probably never relax in my tub again though that I don't think about all the baths I've taken in the last month. Sometimes, 4 times a day.

I'll probably not update this post much moving forward unless something significant happens. Trust in the Lord along your journey no matter what and you will get through this

Much love,

Gigi from TN

mp327's picture
mp327
Posts: 2949
Joined: Jan 2010

I'm glad to see your update and know that you are doing well!  May you continue to see improvements and soon have things back to normal!

Marynb
Posts: 1134
Joined: Aug 2012

So glad to hear that you are starting 2013 with your treatment complete! You are a trooper! Happy New Year! God is so good!

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