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Any one heard of squamash cell rectal cancer?

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

I am newly diagnosed and really scared. Have been told this is a rather rare type of cancer and do not really know where to go for info. My doc has referred me to a Hospital and my case is before the review board. If THEY don't take me, then what? Help pls!

mp327's picture
mp327
Posts: 2886
Joined: Jan 2010

Is this rectal or anal cancer you've been diagnosed with? If it's anal, which is considered a rare cancer, then there are many on this board who might be able to offer you support. If it's rectal, you may need to go to the colorectal board. Anal cancer is typically a squamous cell cancer and the standard protocol for treatment is chemo and radiation. If this is what you have, then please check out the website for the National Comprehensive Cancer Network, register, then take a look at the treatment guidelines for anal cancer, which are quite complete and informative. I wish you all the best.

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

Anal. And yes, considered rare. I am waiting for a review board to see where to even start with treatment. I had never even heard of such a thing. How treatable is this type of cancer?

mp327's picture
mp327
Posts: 2886
Joined: Jan 2010

Please go to the website for the National Comprehensive Cancer Network, register, then print out the treatment guidelines for anal cancer. This will give you lots of information. I would recommend printing out two copies and taking one to your doctor. Read through everything and become informed. Standard protocol is 2 rounds of chemo with Mitomycin and 5FU, along with approximately 6 weeks of radiation. PET scan is usually done to stage the cancer. I don't understand why a review board would be necessary to come up with a treatment plan for your cancer--it's a standard protocol.

tramoo2
Posts: 9
Joined: Jul 2011

ive had rectal/squamous cell cancer. my cancer was treated with radiation and chemo.
i was diagnosed in 2007. squamous cell has been known to come back in other places.
which mine has. it came back in my lung and has required surgery in april of 2011. just 2 days ago i under went surgery again for a suspicious lymph node. my case has been put before a review board as well. i follow instructions and move as aggressively as my team of doctores more. aggression is the key. my doctors act quickly and so do i. i am awaiting the results of the lymph node. i will keep fighting. there is no way to fight but aggressively in your soul and submissively in your hear.

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

Radiation and chem for how long? We really don't have dr's who specialize in this type of cancer here locally (though we do have some really great specialist for most other types) ....truly frightened here"...........

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

Hi Lorikat,

As cancers go, anal cancer is considered one of the easier ones to treat and cure. It's ok to be frightened - it's a frightening diagnosis. Sometimes there can be spreading, but certainly not always. Do you know what stage you are and whether or not there is node involvement? The doctor would have said something like 'stage 1, stage2...etc'.

Where are you from? There may be someone on the board from the same area who may be able to refer to you someplace nearby that has experience in anal cancer. There's a standard treatment protocol for anal cancer - six weeks of radiation with two rounds of chemo, one in the first week of radiation and one in the fifth week of radiation.

I'm almost three years out now. The treatment was definitely not fun, but it's over now and I don't have many side effects - and no more cancer. Take heart, you can get through this.

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

Thank you ...I needed to hear that it is one of the currable ones. I am trying to calm down and wait for instructions. I CAN do this...

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

Yes, you CAN do this!!!
And there'll be plenty of folks here to help you through it.
You'll probably feel a lot calmer once you get started on treatment. Well, not calm, but you know what I mean. The waiting is terrible!

You go, girl!!!!!

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

It is a very curable cancer. I am 11 months out from treatment. All my follow up tests to date show no cancer and I was late stage 3. Check out the other posts on this sight too. The post will provide you with much info.
Hang in there.
Norma

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

A good news story! Until hearing from Rose and yourself I had only heard bad. Chin is now up and I have high hopes. Thanks for the encouragement. Lorie

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

Lori what part of the country to you live in? Anal cancer is curable. It is rare though and it is important that you deal with a team of doctors who are famiiar with it. Let us know what part of the country you are in and maybe one of us can recommend doctors or hospitals.

It's scary, but there is hope.
Liz

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

Texas....

mp327's picture
mp327
Posts: 2886
Joined: Jan 2010

If I lived in the state of Texas and was diagnosed with anal cancer, I would be going to MD Anderson in Houston for consultation. I would specifically ask for Dr. Eng, who is a top notch specialist in the treatment of anal cancer. You might be able to see Dr. Eng, let her and a local oncologist from your area confer with each other on a treatment plan, then have the treatment administered closer to home. Please do this, as it sounds as if anal cancer is a disease that is unfamiliar to your local docs. Although the treatment protocol is standard (guidelines are availabe to everyone on the NCCN website), it would give your local docs the latest and best information if they consulted with Dr. Eng. Good luck with this and please keep us posted.

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

Yes! I actually have an appt a MD. Anderson. Just got the news! I have an awesome local Doc.. ... How fast does this cancer grow as my appt is several weeks away?
I appreciate everyones sharing of experience and knowledge. Thanks..

mp327's picture
mp327
Posts: 2886
Joined: Jan 2010

I'm very glad to hear you are going to MDA! That is the best place to go for AC. Please let us know how it goes.

sephie's picture
sephie
Posts: 523
Joined: Apr 2009

i am not sure but i think it is not super fast because i had problems for over 18 months before the correct diagnosis and i was stage 2. so a few weeks will be ok. i actually had to put my appt off further than 2 weeks to heal up from my excisional biopsy. i am now at 25 months post tx. i went to MDA. yea for you going to MDA. ask them for a water bottle to clean yourself with- no toilet paper. sephie

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

Thank you, thank you!! I am now going to try to relax until tme for my appt! You folks are wonderful! I am so glad that MDA is the right place to go and there is nothing like hearing it from others to reaffirm that. God bless you all........

Lorikat's picture
Lorikat
Posts: 558
Joined: Jul 2011

Yes! I actually have an appt a MD. Anderson. Just got the news! I have an awesome local Doc.. ... How fast does this cancer grow as my appt is several weeks away?
I appreciate everyones sharing of experience and knowledge. Thanks..

Wade James
Posts: 3
Joined: Jun 2012

It is now 6:24 a.m. in Atlanta. In a short number of hours, depending on the results of the pelvis/abdomen CT scan I had a week ago, I am supposed to begin another 5-day infusion of cisplatin and 5FU, my 4th chemo infusion in 4 months (I have been receiving a new infusion every 28 days to be exact). Exactly one year ago in May and June 2011, the standard protocol treatment for anal cancer: 2 4-day rounds of chemo (mitomycin and 5FU)and 6 1/2 weeks of radiation 5 days a week which I was receiving put me in remission for about 6 months. That treatment ended June 10, 2011. 4 months ago, in early February 2012, my radiation oncologist detected an enlarged right-side inguinal lymph node in a CT scan. A biopsy revealed malignant cells. Another biopsy on a left-side inguinal lymph node was also positive for malignant cells. A PET scan showed more lymph nodes lighting up in the abdomen. I was told I am now StageIV metatstatic, instead of being StageIIIB when I was diagnosed in April 2011. A referral to a surgical oncologist after the malignant biopsies resulted in a no-surgery decision. Because the 6 1/2 weeks of radiation a year earlier was a once-in-a-lifetime tolerance, my only treatment option in February was more chemotherapy : this time 5-day rounds of cisplatin and 5FU every 28 days (which is what I mentioned at the beginning of this comment). After asking for frank honesty (redundant?) my radiation oncologist told me there is a 0% chance I will be alive 5 years from now. My chemo oncologist said patients like me typically have 1-2 years left. My appointment with my chemo oncologist 3 hours from now will give me the results of the new pelvis/abdomen CT scan I had a week ago ; afterwards a new chemo infusion is supposed to begin. I am glad to read your recommendation of Dr. Eng at MD Anderson. I am considering an alternate opinion from someone like Dr. Eng at an eminent institution like MD Anderson because my wonderful sister who left her home and family in order to come to Atlanta to caretake me for a week lives in Houston.

mp327's picture
mp327
Posts: 2886
Joined: Jan 2010

My heart breaks reading your post. I'm so sorry that the initial Nigro protocol was unsuccessful in ridding you of all of the cancer and that you are now dealing with recurrent Stage IV disease. I live in the Atlanta area and felt I had very good care from all of my doctors. However, I am not in your situation, and since Dr. Eng is one of the top doctors in this country when it comes to anal cancer, in my opinion, you should seek a consult with her if at all possible. I hope you will get the scan results today and they show that the current treatment is doing its job. Bless your sister for coming to Atlanta to be your caregiver. Please let us know what happens today and if you'll be going to Houston.

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

I was treated by Dr.Eng at MD Anderson. If you can, go there for another opinion. I was told that I had received maximum radiation as well and if the beast came back that surgery would be my next step. Fortunately it did not come back. I originally had Cisplatin.

If you are seriously pursuing the second opinion you can have your doctor do a referral for you which tends to be quicker. Dr.Eng's schedule is very busy as you can imagine, but I know she does find ways to fit people in particularily the more challenging cases.

Do not lose hope. There are stage IV survivors that are with us for more than 2 years.

Wishing you the best, most of all strength and hope.

Liz

torrance
Posts: 118
Joined: Jan 2012

Wade James,

Boy do you have a lot on your plate right now. I am glad your sister is there to support you at this most difficult time. Seek the other opinion, it will help you face whatever comes. You certainly don't need to add "what if" to your plate. Seek calm and peace to face what lies ahead for you. Remember, on the other side of fear is freedom.

Wishes to you,
Joanne

mxperry220
Posts: 360
Joined: Mar 2011

If you are in the Houston area M.D. Anderson is one of the best. I m in the DFW are and used Baylor Plano. Dr. Gupta is my doctor, Dr. Engleman is my radiation doctor, and Dr. Macaluso is my colorectal doctor. They are great doctors. I am 3 years 5 months post treatment.

myrtletree
Posts: 6
Joined: Jun 2012

hi Lorikat, be encouraged. i was treated for stge 4 rectal tumour. my dr.misteated it as a hemmerroid. i was given chemo and radiation plus i have a colostomy . tumour was about to enter into other organs and is now gone. very bad scarr tissue left. radiation has left me with sacral pain and lower back pain being eased by aggressive hip and back strengthening exercises and stretching out scarr tissue with infra red therapy and back extensions. have now got false teeth due to the chemo softeneing my teeth. i work hard each day to improve my quality of life. pain management via anti inflammatories, heat and biofreeze for nerve pain. into my 7th year of being cancer free. hard going but improving all the time an grateful to be alive. a scary diagnosis but not the end of the road by any means.God Bless.

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