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my mom was diagnosed anal cancer grade III A

samyfly
Posts: 12
Joined: Jan 2013

Hello everybody.I 'm a new member of this gorgeous Forum.My mother age 58 was diagnosed anal cancer stage III a, it spreads into vagina rectum anus muscles but the lymph nodes hadn't been involved (yet).We live in Italy and here, in my country there are a few information regarding this rare cancer.

My mother has just begun the standart treatment chemo+radio and I'm so worried and desperate...she's everything to me...

Is there anybody who won against this monster stage III A without surgery? she did a temporary colostomy.

Thank you all for your support

Sam

 

Lorikat's picture
Lorikat
Posts: 564
Joined: Jul 2011

Hello... I am not the stage of your Mom, but am sure someone will chime in soon. Sorry about your Mom....

islandgirlculebra's picture
islandgirlculebra
Posts: 139
Joined: Dec 2012

Hi. My stage at diagnosis sounds similar to your mother's but a little more advanced, with the cancer into the sigmoid (sp.) colon also and with some lymph nodes lit up on the scan.  I am now 9 months post treatment, and so far, exams and PET scans have been clear.

mp327's picture
mp327
Posts: 3074
Joined: Jan 2010

I'm very sorry to hear of your mom's diagnosis and I can understand your worries.  Cancer can be very scary and it is hard to see a loved one go through this treatment.  However, I have been communicating with other anal cancers survivors for over 4 years now and many of them were diagnosed with stage IIIa cancer and are doing very well.  Anal cancer treatment is not fun, but it does have a very high rate of success and lasts for only a short time, as compared with other types of cancer treatment.  The fact that she has a temporary colostomy will most likely be in her favor, as she will not have to go through the excruciating pain of bowel movements during treatment.  While it may be an inconvenience right now, it is only temporary and can later be reversed.  With the standard protocol of treatment, her entire pelvic region will be radiated, which should attack cells in the vagina, rectum, and anal muscles.

 

I encourage you to learn as much as you can about this type of cancer and the treatment.  Knowledge is power.  In my opinion, the best website for complete information is that of the National Comprehensive Cancer Network www.NCCN.org.  There's lots of good and current information there.  You will need to do a brief registration, but then will have access to the treatment guidelines.  Also, the Anal Cancer Foundation has a website, so just Google and you will find it. Another good website for information on getting through treatmnet is www.analcancerhelp.info.

 

Please keep us posted on how your mom is doing and come here with any questions or concerns or when you need to vent.  We are here to help you and your mom get through this.  I wish her all the best.

 

 

samyfly
Posts: 12
Joined: Jan 2013

I'm crying right now, I thank you all for your kindness !

I'm learning a lot reading all these topics.My friend is coming to U.S on monday and she'll buy Aquaphor and Dermoplast Pain Relieving Spray.If you have any other product to suggest please let me know.

When we talked to the Oncologist she told us that this kind of cancer grows slowly but it's very hard to eliminate radically.The Oncologist said that probably at the end of treatment tumor will still be there. Maybe smaller.She said my mother has 50% possibilities to make it.

I'm worried also because they diagnosed tumor in november and the treatment started on thursday, last week.She stops for the weekend and tomorrow she'll restart treatments.Did the waste time?

I'm scared to death!

 

islandgirlculebra's picture
islandgirlculebra
Posts: 139
Joined: Dec 2012

I was also told by the Radiation Oncologist that my tumor would still be there after treatments because it was large to begin with and I had to stop the treatments early, and I would have to have the surgery....... All that remained after the treatments was scar tissue........ I don't know why your Oncologist is being so negative; my Colo-rectal surgeon told me from the outset that he has had success getting rid of this cancer with chemo and radiation.  It seems some Dr's (like my Radiation Oncologist) feel it is their responsibility to tell you the worst that can happen to prepare you for it, in the process beating you up emotionally when you are so vulnerable........  My philosophy on that is - they are human just like all of us, they are intelligent, but don't know everything and cannot predict the future, and exactly how every single individual's body will respond to treatments......Please don't let these negative predictions beat all the hope out of you.  As you can see from many posts on this site, there are many, many Stage III survivors doing very well and enjoying their lives.

jcruz
Posts: 264
Joined: Jan 2013

Your mom’s diagnosis sounds very similar to mine. There was concern that the tumor was invading the vaginal wall and I had a suspicious area of cells on my labia. I had no lymph node involvement. I had the concurrent radiation/chemo treatment with 34 radiation sessions. I was diagnosed in mid-July 2012 and my treatment started the first week of September. I was anxious to start treatment immediately but the doctors ordered more scans and sent me to a gynecologic oncologist for an evaluation so I did have to wait longer than I wanted before my treatment started. I just learned this week after a PET scan and biopsy that my tumor is gone. There is no remaining cancer.

Your mother is so fortunate to have you with her. My fabulous daughter was a great help to me all the way through my treatment and beyond.

samyfly
Posts: 12
Joined: Jan 2013

I don't know why Oncologist has been so negative.Maybe the location of the cancer ( between the vagina and the rectum wall) and the fact that this cancer was 3,35 inches, let her think that there would be less possibilities?

Jcruz my mother too had to wait for the evaluation of a team of gynecologic oncologists because it wasn't clear if the cancer was born in the rectum wall or in the vagina .The fact was that it was born in the rectum wall but it had penetrated in the vagina because of their contiguity.

Thank you so much for all your answers it means a lot to me....

I'll translate everything to my mom and she'll feel better I hope...

 

sephie's picture
sephie
Posts: 543
Joined: Apr 2009

your mom is blessed to have you.... she can do this....usually very high (75 - 80 %)   cure rate if stay close to NCCN guidelines.... you  were given the site to look up the guidelines by Martha.....your mom will beat this especially since there is no lymph node envolvment....and because she has you to help her..... .... anal cancer probably does grow slowly because i had problems almost 2 years ( including 1 year of misdiagnosis)  before treatment.      hugs   sephie

samyfly
Posts: 12
Joined: Jan 2013

thank you Sephie..I'm so fortunate to have found a place like this where people have a great heart...

if somebody else with anal cancer stage III A will show up I'll really appreciate!

 

eihtak
Posts: 878
Joined: Oct 2011

Hi, I was diagnosed almost 2yrs ago with Stage3b. I was treated with standard chemo/rad but had also started on a clinical trial. I also had a temporary colostomy prior to treatment, and after hearing the painful stories of so many am glad I had it during radiation burns. I did have some issues (not complications really), but had to stop the clinical trial. The radiation caused some internal swelling and my colon prolapsed (basically resting in colostomy bag). This was scary for me and somewhat rare according to my doctor. About 2wks after radiation was complete the colon went back to normal on its own. My PET scans have come back clear on the anal cancer for almost 2yrs now, but have been diagnosed with a rare slow growing breast cancer for which I have had a double mastectomy. Due to a combination of that diagnoses/treatment and excess scar tissue involving sphincter control I have not had my ostomy reversed. It has still not been completely ruled out, but chances are very slim.

As stated before, this treatment is rough, but doable with very good results.

I will keep both you and your mother in my thoughts and prayers for smooth treatment with a quick and long lasting recovery.

samyfly
Posts: 12
Joined: Jan 2013

I'm so sorry for all this sufferings...when we entered the cancer world everything seemed to desappear..the joy, the hugs of my little child, 4 years old.Sometimes I try not to think about it, sometimes I break down in tears.

Do you think Eihtak that the breast cancer might be connected to the anal cancer? We were told that my mother won't be able to use her sphincter in the future because the cancer has infiltrated it and the radio will be heavy in that site.

She knows that her colostomy won't be easily reversed...

eihtak
Posts: 878
Joined: Oct 2011

Right now this sounds wrong I'm sure, but for me this world of cancer has been as big a blessing as a nightmare. During my illness, my husband was also diagnosed with multiple myeloma (a blood cancer) and 1yr ago underwent a bone marrow transplant. I have 5 children now 20 to 26 yrs old. They had no experience with being caregivers and some had young children of their own. The word cancer was sooooo frightening to them, especially since it described both parents. But life doesn't disappear, in fact before long, the joys, the hugs, the love and support and LIFE came back to us tenfold. Cancer taught us patience and the power of prayer, it educated us about things we never knew, it changed our perspective on people and life, and taught us to be even more appreciative of what we have. The journey is different for everyone, and there were points when I would go for a drive just to cry, but then that patience and prayer paid off and day by day things got better, and today I am the best I've been in years. My family is stronger and I know which friends are made of steel. The tears are part of the process. My grandfather used to say to me "go on now cry long as you need, it will make your eyes sparkle".

As far as the breast cancer goes it was most likely not related. They guessed I may have had it for 10 yrs. It was called Secretory Carcinoma, a rare slow growing cancer more often found in children or even men. It is not easily detected on a mammogram. Mine was found at my 1yr PET scan for anal cancer follow-up, so had I never had the "treatable" anal cancer it may not have been found until too late. For that reason alone, I feel blessed.

There is a lot they can do with reversals, don't let that occupy your mind at this time. Everyone reacts different and some have less radiation damage than others.  Your mom will need to focus more day to day for a while, kind of like baby steps. As a caregiver and mother you will need to also take a moment each day to focus on you.  When helping take care of my husband, when I was somewhat recovered I took a walk, went for coffee with a friend, something where I didn't have to talk about cancer for just a little while.

Again, I will keep you both in my thoughts. 

 

samyfly
Posts: 12
Joined: Jan 2013

Eihtak thank you so much...I think you all are fighters and even if at the beginning  we felt lost, I'll try to help my mom to become a strong fighter!

I forgot to say that she is HPV positive.

In Italy we say "grazie dal profondo del cuore"

 

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

Im 6 weeks post treatment of Stage II no lymph nodes invasion. I was told that I was borderline stage III when treatment started. I did ok..it was painful and some days I just fell to my knees praying for relief..BUT, I made it..each pain only lasts for a moment in time and there was peaceful times too. Trust in the Lord during this time and you and your mom will prevail.

Much love

GIGI

Lorikat's picture
Lorikat
Posts: 564
Joined: Jul 2011

Well said.....

samyfly
Posts: 12
Joined: Jan 2013

thank you all for your support! 

my mother is taking 5 pills a day of Xeloda ( is used to treat: Metastatic colorectal cancer) plus 30 session radio and every 21 days she gets an infusion of cisplatin.Have you infos about those pills? I assume it's not the standard treatment in the U.S.
My mother started treatments on thursday last week and she hasn't any side effect till now,but of course it's just the beginning...

lizdeli's picture
lizdeli
Posts: 522
Joined: Jul 2009

I was diagonosed with Stage 111a with suspicion that the vaginal wall had been "invaded".  The tumor was 2.5 cm.  I was treated with 5FU (which is the intravenous version of Xeloda as I understand it) and Cisplatin along with 7 weeks of radiation - max dosage.  I had the 5FU fanny pack and a PICC line - that was 5 days a week 24X7 for 6 or 7 weeks.  I received the Cisplatin once a week for 7 weeks. The radiation was daily, 33 minutes total - 5 days a week.  All that was 3 1/2 years ago.  Going for my check up in 10 days.

 

I know it is very scary, but there is hope and many of us survive this.  My best piece of advice would be to insure as best you can that you have the right doctors.  Ask questions and if in doubt seek a second opinion.  It's s difficult journey but thankfully the treatment is short term. Take one day at a time.  Being there for you Mom is so important. Be sure take care of yourself as well. The caregiver load can be heavy at times.  So glad you are reaching out. We will all be here to help you through it.

Wishing you and your Mom the best.

Liz

mp327's picture
mp327
Posts: 3074
Joined: Jan 2010

I want to wish you all the best with your upcoming follow-up visit.  I'm sure everything will check out just fine!

samyfly
Posts: 12
Joined: Jan 2013

Thank you Liz! I wish you all the best! keep us posted about your follow up! It's nice to see that this beast is beatable! thank you again for your words! :)))

sephie's picture
sephie
Posts: 543
Joined: Apr 2009

i know you will get the all clear at your check up.    hugs   sephie

OMG 1012
Posts: 61
Joined: Dec 2012

Best wishes for NED forever!

lemon68
Posts: 1
Joined: Jan 2013

Hi

My best friend was also DX at age 58, she did chemo and radiation and was also Stage 3. It was tough but she did it and it has been 6 wonderful years and she is still cancer FREE!! I understand the pain and anxiety you are feeling, I am so sorry. I hope things get better for both of you. I was recently DX with Breast Cancer so I know the emotions that all this causes. My best friend having been so strong to fight her Anal Cancer is giving me strength. Bless you and take care of you and mom.

HUGS

lizdeli's picture
lizdeli
Posts: 522
Joined: Jul 2009

I appreciate all your support! I'll update you as soon as I come out of my barium hangover!  Laughing

samyfly
Posts: 12
Joined: Jan 2013

thank you so much girls! Lemon your post gives me courage! unfortunately after 15 days of chemo pills (Xeloda) and 10 days radio my mother has to stop for a week.She started with nosebleeding and her white blood cells and platelets were too low.Hope this stop  won't be dangerous...she feels terrible burning in the anus zone and she's taking painkiller suppository.

what do you think? is it dangerous to stop treatments?

thank you so much

samyfly
Posts: 12
Joined: Jan 2013

thank you so much girls! Lemon your post gives me courage! unfortunately after 15 days of chemo pills (Xeloda) and 10 days radio my mother has to stop for a week.She started with nosebleeding and her white blood cells and platelets were too low.Hope this stop  won't be dangerous...she feels terrible burning in the anus zone and she's taking painkiller suppository.

what do you think? is it dangerous to stop treatments?

thank you so much

Marynb
Posts: 1134
Joined: Aug 2012

I had to stop treatment twice due to low white blood count. They gave me shots to get the count up. The shots made me feel like I had the flu. That only lasted for a few days each time.

Your Mom is so lucky to have such a wonderful daughter! You both will be in my prayers.

samyfly
Posts: 12
Joined: Jan 2013

Thank you so much Marynb I just love her so much!

 

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