My Story

rocky1040

Hi All,
So glad I found this forum, I couldn't find many forums on this type of cancer that would teach me something, you all are helping to educate me. So let me begin..........

Routine colonoscopy, they found two polyps, I was diagnosed with invasive squamous cell carincoma, margins uninvolved. The first copy I got there was no staging, called the patholigist who did the staging and demanded he do that and also the size of the tumor.
Staging is as follows pT1, pNX, pMx. Tumor sized is 0.6cm.

The tumor with cancer was found distal rectal, left anterior quadrant. Other polyp was fine not cancer. I have also sent my path slide to be reviewed for a second opinion.
I have also fired my surgeon......he lost my path report, he recieved the report on March 12th, lost it, found it, called me on April 6 with the old need to make appt to talk about your path results.....wasn't going to wait so went to the hospital and got the results myself.
I have had 3 opinions, **** surgeon (sorry I swear alot and I am still mad at him) said I need nothing, just checking me every 3 months, etc.
I happen to be fortunate to have a university where I live with a great Cancer Hospital, they said chemoradition therapy (6weeks) also going to do all the tests (pet, ct, chest etc)
We also have a private cancer instituation highly reputable and they told me the same thing. I have no risk factors or so I thought except for smoking and I don't do that anymore but I only stopped 6 months ago. I have never been diagnosed with HPV but the doctor told me that I wouldn't necessarliy know that I have it and with this type they do think that it could be from this.

All that I have talked to have said that they feel this has been caught early, and with treatment is curable, which is what helps me stay postive, but let me tell you I am still scared also scared to get chemo/radiation

Oh and I hate to admit this but why do I not want people to know that I have this type of cancer and I mad at myself...I know this needs to be talked about but I'll deal with that after my treatments need to focus on being positive, laughing, and getting thru treatment!
And I am hear to tell you I am going to laught myself thru this!

Ok, this is where you all come in. PEOPLE WHO TRULY KNOW WHAT I'M FEELING. Any and all all advice most welcome about anything to do with the cancer no one talks about LOL....ok maybe thats a little dramatic. CHemo/radiation tips......I am worried about weight loss, I would just love to hear from you all.
Sorry so long and thanks to everyone who reads this, sending alot of love and hugs!!!!

Lorikat

Rocky..
Sooo sorry you are here but glad you found us. Your story sounds similar to mine. I was diagnosed with squamous cell rectal cancer in July 2011.
I was staged at T2NOMO with a 5 cm tumor on the transition between anal and rectal. My cancer IS rectal but is being treated using the protocol for Anal cancer. I was treated at MD Anderson in Houston after some rather disheartening visits with local docs. Truth is they had not seen nor dealt with this particular cancer. The biopsy results given to me here were Anal cancer. MDA said SCC Rectal. Different than anal but treated same.

I leave for Houston in two weeks for my second check up, six months out of treatment. (Radiation/chemo). Surgeon will not say there will not be surgery but says he does not plan on it. Hoping for a response of NED this time. (no evidence of disease)

Now the good stuff....I feel great! I do mostly whatever I want to. I do have to battle fatigue and aching hips and thighs, but other than that I feel wonderful. I have learned so much.....I was (am) the primary caregiver for my Mother who has cancer, COPD, and mass on her pancreas. She is totally housebound, either sits in her recliner or in bed. (hospice has been called in, but has been before and she improved so much they were let go!)
I have hired caregivers for my Mother and my brother takes care of so much of the rest. Would never have asked for help before!

Anyway, I post and question on this forum because I share the same treatment and the people are incredibly kind and helpful. So ask way.....

Lorie

mp327

Hi rocky1040--
I'm sorry your diagnosis has brought you here, but you will find this a place of comfort, support and information. I'm sorry you've had some bad experience with doctors along the way, but hope you are now in the care of very qualified and compassionate docs. It does sound like your cancer has been caught in a very early stage and that will certainly play in your favor. It is natural to fear the treatment, but take comfort in knowing that so many of us have been through this and are now getting on with our lives with few long-term issues. No one is going to tell you that it will be fun, but it is totally doable. We are here to help you get through it, so please lean on us when you have questions. About weight loss, it may happen, so you may want to put on a few pounds prior to beginning treatment if this is a worry for you. I am quite small and got down to 92 pounds at my lowest and my med onc threatened to put me in the hospital. It is tough to eat when your body does not want food. You will want to eat plenty of protein. Also, of utmost importance is hydration. Drink plenty of fluids, as you will dehydrate easily, especially if you experience diarrhea, which is a common side effect. Just take it one day at a time and soon you will be out of the woods and into the healing phase. Also, let others who offer help you out--it will make them feel good and you will get in more rest time. If you think of any other questions, please ask! I wish you all the best!

danker

rocky 1040
Don't be afraid!!! I had tumor at high end of rectum satage 2 bordering on stage 3. 5 weeks of radiation coupled with chemo pump
of 5fu 24/7 at 1 1/2 mm per hour. after 6 weeks rest. surgery . doc gave me iliostomy to rest colon. I learned to live with my bag.
it got easier with time. after 6 weeks got iliostomy reversal. Probably from loose stapel developed a fistula. So 5 more weeks with bag on fistula. But it healed itself from the inside out. All of this was in 2010. now live normal life with occasional diarrhea. last year colonoscopy with no cancer. So you too can come thru it all. good luck & god bless

danker

rocky 1040
I had tumor at high end of rectum stage 2 bordering on stage 3. 5 weeks of radiation coupled with chemo pump
of 5fu 24/7 at 1 1/2 mm per hour. after 6 weeks rest. surgery . doc gave me iliostomy to rest colon. I learned to live with my bag.
it got easier with time. after 6 weeks got iliostomy reversal. Probably from loose stapel developed a fistula. So 5 more weeks with bag on fistula. But it healed itself from the inside out. All of this was in 2010. now live normal life with occasional diarrhea. last year colonoscopy with no cancer. So you too can come thru it all. good luck & god bless

danker

rocky 1040
I had tumor at high end of rectum stage 2 bordering on stage 3. 5 weeks of radiation coupled with chemo pump
of 5fu 24/7 at 1 1/2 mm per hour. after 6 weeks rest. surgery . doc gave me iliostomy to rest colon. I learned to live with my bag.
it got easier with time. after 6 weeks got iliostomy reversal. Probably from loose stapel developed a fistula. So 5 more weeks with bag on fistula. But it healed itself from the inside out. All of this was in 2010. now live normal life with occasional diarrhea. last year colonoscopy with no cancer. So you too can come thru it all. good luck & god bless

MyHopen413

I'm really sorry you have
I'm really sorry you have this diagnosis. I was diagnosed 04-07-11 with Stage IIIA because my margins were involved. I do understand exactly about not wanting to discuss the type of cancer you have with others. I didn't want to tell anybody. Most people I just told that my cancer was found on my first colonoscopy, and left it at that. Probably you will have radiation with chemo the first and last week. It is rather unpredictable how treatment will effect you. I won't lie to you, it is hard. But, you will MAKE IT THROUGH. Keep a notebook, read all the material they give you, don't be afraid to ask questions, arrange for a friend or family member to drive you if you need it and find someone to talk to about how you feel.
I've been through two rounds of treatment, chemo and radiation, because my cancer spread a little. Today, I am cancer free and back at work. You will be cancer free, too. This is very curable cancer.
Good luck to you.

rocky1040

Thanks all
Thank you all so much this next week is filled with tests, pap, mammogram, ct, pet, blood workup, oncologist appt. Wow. I have a folder of information on this type of cancer and will have alot of questions but still trying to take it on in. I wake up every morning and say to myself...this can't be true but it is. I feel strange and at the same time I feel a need to get the word out about this. I think we will continue to see alot more of this.
Thanks again I will be posting alot.....by the way Rocky is my Great Pyrenees who is amazing and along with my husband and two amazing boys will help me get thru this

sissy310

rocky1040 said:

Thanks all
Thank you all so much this next week is filled with tests, pap, mammogram, ct, pet, blood workup, oncologist appt. Wow. I have a folder of information on this type of cancer and will have alot of questions but still trying to take it on in. I wake up every morning and say to myself...this can't be true but it is. I feel strange and at the same time I feel a need to get the word out about this. I think we will continue to see alot more of this.
Thanks again I will be posting alot.....by the way Rocky is my Great Pyrenees who is amazing and along with my husband and two amazing boys will help me get thru this

Hi rocky1040...I'm sorry you
Hi rocky1040...I'm sorry you are in here for the reasons you are but am happy that you found such a wonderful group...I can attest to that fact when I came in here almost to two years now when diagnosed...I am seeing such a pattern with everyone's diagnosis (or misdiagnosis or totally missed-diagnosis) and for anger at the medical profession. Irks me to no end that they either ignore, shove aside or feel this is too rare for it to happen...I was misdiagnosed and lived with symptoms for a year before my medical doctor got annoyed with me and sent me to a surgeon who scoped and found nothing until he went in to remove what they thought were hemi's. Oh yes, I did have hemi's but a huge tumor besides that the surgeon took a piece of thinking he got it all and it came back as squamous cell of the anal canal...T3,N1,M0. I came in here when I found out the staging and God love everyone in here because they all eased my fears and got me through the merry go round roller coaster ride of my life. And so, I and everyone else here are now here for you. Will keep you in my thoughts and prayers. Marilyne

eihtak

sissy310 said:

Hi rocky1040...I'm sorry you
Hi rocky1040...I'm sorry you are in here for the reasons you are but am happy that you found such a wonderful group...I can attest to that fact when I came in here almost to two years now when diagnosed...I am seeing such a pattern with everyone's diagnosis (or misdiagnosis or totally missed-diagnosis) and for anger at the medical profession. Irks me to no end that they either ignore, shove aside or feel this is too rare for it to happen...I was misdiagnosed and lived with symptoms for a year before my medical doctor got annoyed with me and sent me to a surgeon who scoped and found nothing until he went in to remove what they thought were hemi's. Oh yes, I did have hemi's but a huge tumor besides that the surgeon took a piece of thinking he got it all and it came back as squamous cell of the anal canal...T3,N1,M0. I came in here when I found out the staging and God love everyone in here because they all eased my fears and got me through the merry go round roller coaster ride of my life. And so, I and everyone else here are now here for you. Will keep you in my thoughts and prayers. Marilyne

Hard to talk about
Hi, and welcome, this is surely the place to feel free talking about anything to do with this uncomfortable subject. You will find it easier as you yourself become more knowledgable. My kids, though young adults had a difficult time telling friends their mom had Anal cancer so at first would say "lower colon cancer". We all learned to find some humorous situations and in time it became easier to be more specific, and you will too. I am about 1yr post treatment but unfortunately am now batteling (unrelated) breast cancer. It is a tough road but with the great support and advice I have found from people here going through the same things as myself I have found this journey just a bit easier. Keep in touch with any questions as time goes on. As always,all in my prayers.

sephie

rocky1040 said:

Thanks all
Thank you all so much this next week is filled with tests, pap, mammogram, ct, pet, blood workup, oncologist appt. Wow. I have a folder of information on this type of cancer and will have alot of questions but still trying to take it on in. I wake up every morning and say to myself...this can't be true but it is. I feel strange and at the same time I feel a need to get the word out about this. I think we will continue to see alot more of this.
Thanks again I will be posting alot.....by the way Rocky is my Great Pyrenees who is amazing and along with my husband and two amazing boys will help me get thru this

sephie
just wanted to let you know that Sephie was my rescued himalayan cat. he had to be put to sleep but now I have another rescue persian. i am sort of known as a cat lady. i also had a gorgeous 14 yr old yellow lab but he had to be put to sleep also. they are a comfort to me. anyway, good luck to you thru all the testing. hugs sephie