Survival rate

There have been people on the 3 sites that I'm on who are well past the 5-year mark.  I believe one recent poster was a 14-year survivor, but was about to undergo treatment for a recurrence.  I am 5 1/2 years post-treatment as of tomorrow!

I am also a member of a couple different support groups. I have an ostomy and go to an in-person group meeting for people with ostomies so there are people who are survivors of cancer and also there for other reasons. One very encouraging man is a 12yr anal cancer survivor. He is doing great and does physical labor type work on heavy machinery! I always feel inspired when I see him!

RoseC said:

Hi

It's much higher than that. More like 80%, from recent data I just now looked up (I don't place much faith in stats, so I don't pay much attention to them). Please don't put much credence into anything you read that might cause you undue stress - stats depend upon so many factors and unless you know the data pool and all associated factors, they're pretty meaningless.

The website for the National Cancer Institute Surveillance, Epidemiology and End Results Program, IMO, is a reliable source of information for survival rates.  I have posted a link below to the page for anal cancer.  The problem in trying to find out survival rates for those longer than 5 years is that we are followed for only 5 years.  After that, no more data is collected, so there is no information to report.  It's unfortunate and I do not know why 5 years became the benchmark, but that's just how it is.   

http://seer.cancer.gov/statfacts/html/anus.html

And to answer someone's question as to if all people diagnosed with anal cancer survive, sadly, they do not.  In the 5 1/2 years I have been communicating with other people about this disease, I have seen more people than I care to think about succumb to this disease.  The statistics back up the fact that people die from it.  However, remember that statistics include all patients and do not take into consideration lots of other things that may or may not affect each individual's chance of survival.  Overall health, age, stage of the disease at time of diagnosis, and previous medical history can all be contributing factors.

I don't care to think of myself as a statistic, so when I read those numbers, I remind myself that they are just that--numbers.  I would urge you all to do the same.   

Missgrace said:

What symptoms should alert me

What symptoms should alert me to a recurrance?

I've had three or four times during the past few years when I feared there was a recurrence. Things like changes in bowel habits and one time a new growth (turned out to be a thrombosed hemmy). If you don't mind me asking, are you having particular symptoms that are worrying you? It might be that someone on the board has had similar symptoms and may be able to help. Course the best thing would be to ask your doctor, but maybe we can help too.

Missgrace said:

Really, nothing in particular. Sometimes, I just don't feel right, though, and it scares me. Right now, my hips bother me more than anything. Most likely, it's just old age.

I was stage 3 with mets in my lymph nodes and possibly vaginal wall. 4 1/2 years  now and doing well. I do recall odd aches and pains for up to two years following treatment. Thighs, back, abdomen and hips. Eventually it subsided. I did have maximum amts of radiation which I think caused a lot of it. Also got some osteoarthritis which the docs said was from the treatment.  But that is the trade off I chose to make to beat the beast. Over time you may find yourself worrying less right now it's pretty common to worry about the aches and pains. It will get better. One day at a time!

wishing you strength and healing. 

Liz

9 years NED for me and I work ground training horses ;-). I was staged at t3,n0,m0.

mp327 said:

Hey gabby!

It's great to see you back here and of course to hear that you are now 9 years NED!  How awesome!  I hope all is going well for you, including your family and your work.  I love it when survivors of that many years come here to let everyone know that they are alive and well.  We all need that encouragement now and then!  Take care and may you always be NED!

Martha

Thanks so much! Now that I think about it, I am 8 years and not 9. Omg. Haha. I guess that fact alone shows that we forget about cancer after awhile. I remember it consuming my thoughts everyday and now, not so much. I even forgot my cancerversary last year till the day afterwards. ;-) I wish that they followed people after 5 years as once u get there, u are in unknown territory it seems. I remember being 6 months out and hearing from those 5 or 6 years NED. Now I am past that and don't hear or see many further out than I am. I was diagnosed at 37 years of age. 

sandysp said:

Congratulations

OMG 37! Thanks for letting us know your anniversary date. That's terrific.

I had cervical cancer at 26. Found out I have CVID. Look it up if you are interested. It's an immune deficiency I was born with that put me at higher risk.

Again, thanks for your post. You made my day.

Sincerely,

Sandy

Thanks SO SO much Sandy  I

Thanks SO SO much Sandy  I love making anyone's day. 

Yes, 37 is really young.  My son was a newborn and I thought I had a hemmorhoid after child birth although I had a c-section.  I always thought in the back of my mind that this was wrong.  Something was wrong.  Throw into the mix my being a widow as my little man's dad died while I was pregnant with him.  After pushing after 8 weeks of not feeling right and pushing to massive pain, I was diagnosed with anal cancer and was staged at T3,N0,M0 purely T3 as the size of my tumour was the size of a lime.  Sadly, the pregnancy hormones fueled my cancer and if I had not been pregnant, I would have probably not been diagnosed for at least 10 years or so.  My pregnancy was the gasoline for my cancer and for that, my son is a blessing.

I had to stop nursing after diagnosis and the start of treatment and I did 26 doses of radiation over 4 weeks and a 96 hour infusion of mitomycin C and 5FU in a hip pouch while I lived my life as a mom to a new baby and a competitive soccer coach as well. I continued working full time and I put my head down and my tail up and I got through it.  I kept aquaphor in the fridge to keep it cold as the burns were PHENOMENAL and I remember sitting in front of a fan naked like a stripper holding my son and biting my lip looking for the strength to JUST get it done.

8 years later finds me with my newborn son now in grade 2 and I sit on the PAC in the school in which he attends.  I also sit on the city council of my district almost at a trustee level and I do it because my life is WAY brighter after seeing cancer and having the guts and the foresight to know that it does indeed pass.  Life does indeed go forward if you choose to get beyond having HAD cancer.

8 years later, I still have to rush to the bathroom upon getting up from my bed and my new normal is 5-10 BM's in 45 minutues upon waking.  Then I live the rest of my day as if I never had cancer in the first place.  I am self employed ground training warm blood horses working 50 plus hours a week and I am in the best damn shape of my life. My last check up from my GP found me with 117/52 for a heart rate and the last time I had a cancer checkup was 3 years plus now as I'm not in cancer school any longer.  I am to report back if I am symptomatic.

I am 2 classes away from a masters degree in math and I cannot remember if there was EVER a month since diagnosis that I did not enjoy the taste of a blue rare, gorgous steak.  I still drink my wine red and msg gives me the runs as does eating anything greasy and I am ok with that because the alternative is not something that I'm ready for yet.

I am not anything special although I had this cancer too.  I hope though that some of you will see that yes, there are those of us that have lived a long time since diagnosis and maybe you should set up your life with the intent that you will be too.

Gabby

gabby_ca said:

Thanks so much! Now that I

Thanks so much! Now that I think about it, I am 8 years and not 9. Omg. Haha. I guess that fact alone shows that we forget about cancer after awhile. I remember it consuming my thoughts everyday and now, not so much. I even forgot my cancerversary last year till the day afterwards. ;-) I wish that they followed people after 5 years as once u get there, u are in unknown territory it seems. I remember being 6 months out and hearing from those 5 or 6 years NED. Now I am past that and don't hear or see many further out than I am. I was diagnosed at 37 years of age. 

I agree that it would be good for those of us who are past the 5-year mark to continued to be followed.  My doctors are still seeing me every 6 months, but I don't think they are still required to include my status on the reports they must file on their cancer patients to the group that keeps the stats. 

I see it as a good sign that you didn't realize you were at 8 years instead of 9!  To me, that says you really have moved on and that you are not letting cancer dominate any of your thoughts.  That's real progress!  I am not there yet, but I'm working on it.  I will be leaving the support boards for good one of these days, only to come back once in awhile to let everyone know I'm still around! 

I'm so glad you're doing well and enjoying life!