my mom was just diagnosed with stage 2 anal cancer

mp327 said:

Hammah

Thank you so much for posting this, as it gives us all a lot of hope and encouragement!  I'm glad you beat the beast and may your good health continue for many, many years to come!  I am a 6 1/2 year survivor of anal cancer and I guess that can be considered long-term in the scope of things.  I am doing quite well.  My treatment was no picnic, but it was worth all the pain and agony to be here now, alive and living a normal life.  I wish you all the very best and hope you'll come back here now and then to remind us that this disease can be beaten!  Take care.

Martha

Hi Martha,

It was my pleasure to post this. I haven't posted too much but the other posts are generally about the same issue. Tell me something. When they were first getting you ready to begin your radiation did they have you lay down on your stomach in what became a cast mold so you could repeat the position for every treatment? I can actually laugh about it now thinking back to how they set the little targets on my butt to align the laser beams so they hit the exact area every treatment. Now I'm a born and raised boston guy, hence the nickname "Hammah" cause that's how they pronounce it up here in the land of the newly crowned World Champion New England Patriots. lol. One other thing that was funny was that at the time here I am a 50 something guy from boston on the table, in the mold with my backside in full display for the world to see and my radiation team had no problem making me blush by bringing in young female medical students to see the set up and hearing my nurse assistant anounce to them "and this fine looking gentleman with the cute tush is one of our favorite patients from boston mass "Hammah" yup, they would giggle and I would blush. (loving every minute of it) However, with all that said, they told me that my two chemo meds were the top of the line most powerful interceptor meds they had that would seek out the cancer cells and blast them to kingdom come. My doc told me that if it was 20-25 years ago, my survival rate was not very encouraging and chances are I would have ended up with a colostomy bag which lucky for me never happened. And you know, I still have those little sticky buttons that they attached the little silver balls to that they used to aim the laser to make me never forget and be able to tell my story to great people like you and the others in here. And, now that I have been back in boston since late 05 I still see a guy at the dana faber on brookline ave in boston every 6 months for a continued follow up checkup. Plus the bonus of being able to park in their garage for 6.00 bucks and walk down to fenway parrrrrk to watch my beloved red sox.

I could have written a book about my cancer and treatment.

You take care too Martha

Dave "the Hammah"

Hammah said:

Thanks Martha!

Hi Martha,

It was my pleasure to post this. I haven't posted too much but the other posts are generally about the same issue. Tell me something. When they were first getting you ready to begin your radiation did they have you lay down on your stomach in what became a cast mold so you could repeat the position for every treatment? I can actually laugh about it now thinking back to how they set the little targets on my butt to align the laser beams so they hit the exact area every treatment. Now I'm a born and raised boston guy, hence the nickname "Hammah" cause that's how they pronounce it up here in the land of the newly crowned World Champion New England Patriots. lol. One other thing that was funny was that at the time here I am a 50 something guy from boston on the table, in the mold with my backside in full display for the world to see and my radiation team had no problem making me blush by bringing in young female medical students to see the set up and hearing my nurse assistant anounce to them "and this fine looking gentleman with the cute tush is one of our favorite patients from boston mass "Hammah" yup, they would giggle and I would blush. (loving every minute of it) However, with all that said, they told me that my two chemo meds were the top of the line most powerful interceptor meds they had that would seek out the cancer cells and blast them to kingdom come. My doc told me that if it was 20-25 years ago, my survival rate was not very encouraging and chances are I would have ended up with a colostomy bag which lucky for me never happened. And you know, I still have those little sticky buttons that they attached the little silver balls to that they used to aim the laser to make me never forget and be able to tell my story to great people like you and the others in here. And, now that I have been back in boston since late 05 I still see a guy at the dana faber on brookline ave in boston every 6 months for a continued follow up checkup. Plus the bonus of being able to park in their garage for 6.00 bucks and walk down to fenway parrrrrk to watch my beloved red sox.

I could have written a book about my cancer and treatment.

You take care too Martha

Dave "the Hammah"

 

LOL!  I loved your post and needed a good laugh after the day I've had!  I love that you have a sense of humor that stayed intact, even through treatment.  My sense of humor still exists, but I admit, I was a bit crabby on some days during treatment.  LOL!  As for the position I was in for the making of my butt mold, I was on my back.  It is strange how some people get treatment on their back while others lie face down.  Perhaps it has to do with the equipment or the location of the tumor--I just don't know.  Or maybe people with extremely cute tushes just have to take their treatment butt up!    Anyway, I can imagine it was a little intimidating at first to have an audience during this molding procedure, but you obviously eased the tension!  And your doctor is so right--if this happened to you or me back in the 70's or 80's, we would be sporting a colostomy bag.  I'm not into that kind of fashion and am hoping to never have to go there and I hope you don't either.  It's good you are getting checked every 6 months.  As we know this sneaky SOB called cancer does some pretty unpredictable things. 

I wish you continued good health and please don't lose that sense of humor--it's priceless!

Martha

RaleighMusicGuy said:

Our situations are exactly the same

Hi, I am a 59 yo male who was diagnosed with stage 2 anal/rectal cancer this past Novemeber.  The tumor is located in my rectum, so radiation in that area was not fun.

Last Wednesday, I finished a 6 1/2 week course of radiation and chemotherapies.

I was removed from the mobile infusion pump one week ago today.

I meet with my Primary cancer Doctor this Monday to schedule the PET scan.

All I have to offer was that I made it through the many weeks of therapies.

Please stay in touch.

Prayers and blessings

I hear everything you are saying RMG. I'll tell you man, that it was a little strange getting treatment down in fla. things that now make me chuckle totally freaked me out down there. one example is when I would go to the place where people sat and either got fluids, or had their ports checked or actually received chemo through an IV it was apparently an event to some of the nurses when a port was removed. One nurse in particular said to me that this was one of her favorite moments to watch which I found to be alittle strange. Course, it was a temporary port sutured to my chest to hold it in place. I don't know why they made such a big deal out of it when it was time for it to be removed, but they did. freaky eh? And here's the real kicker. The first week of chemo they didn't give me the correct amount of meds. The last week of treatment they had given me more than I was supposed to receive. That said, inspite of it all, my weekly bloodwork showed how my treatment was progressing which was a major comfort to me.  Lastly, I don't know about you but I for one will never drink gatorade ever again cause that's all I drank during treatment. I still have all my records from 04 and even the pet scan reports that they did. Prayers and blessings right back at you pal. You're gonna make it. Now it's time for you to take on the rocky balboa attitude and start working on gaining back your strength. walk everyday, or get yourself a total gym like I did. I even got a cool mountain bike with a custom wider seat (if you know what I mean.) I was around 56 when I got diagnosed and am now 66 and probably in the best shape in my life as far as being a senior citizen is concerned. lol. 35 perfect pushups every day as soon as I get up and am still working as a senior mechanical design engineer.

Rock on man!

Dave

Ouch_Ouch_Ouch said:

Here's why.

"I don't know why they made such a big deal out of it when it was time for [the medi-port] to be removed, but they did."

Because it's a rite of passage, a milestone. It's an acknowledgement that one is cancer-free and no longer needs it to receive chemotherapy.

My colo-rectal surgeon wants me to hang on to mine "just in case", but my electrophysiologist wants me to get it out months ago as he fears it's interfering with my immune system. He also says he would never insert a pacemaker while I have it in (and he says the day just keeps getting closer when I'll need one, but I've heard that since I was diagnosed in my early 20s). The oncologist just told me the other day that since I have two non-malignacy scopings, that I should get it out. My next project.....

 

It was such a big deal to me - a big step further away from diagnosis and treatment.  I couldn't wait to get it out. Four months after tx ended and the oncologist said they'd never access it again I scheduled a date with my surgeon to remove it.  I was thrilled but I hadn't really considered just how much of a bond I had with the infusion center nurses.  I spent a lot of time there during tx getting hydration so I'd see them 2 or 3 times a week and then just once a month to have the port flushed after tx.  I missed them and that first year after whenever I had an appt. with the oncologist I'd stop by to say hello.  I'll try to see them in April when I've got my yearly appt.

I see the scar every day and think about my good fortune to be well.

RaleighMusicGuy said:

Our situations are exactly the same

Hi, I am a 59 yo male who was diagnosed with stage 2 anal/rectal cancer this past Novemeber.  The tumor is located in my rectum, so radiation in that area was not fun.

Last Wednesday, I finished a 6 1/2 week course of radiation and chemotherapies.

I was removed from the mobile infusion pump one week ago today.

I meet with my Primary cancer Doctor this Monday to schedule the PET scan.

All I have to offer was that I made it through the many weeks of therapies.

Please stay in touch.

Prayers and blessings

RaleighMusicGuy, you might want to bounce this off your doctor.

As you know, the radiation and chemo will continue to work against your malignant cells (and the non-malignants, too, for that matter) for multi-weeks to come. Hence causing that continued fatigue and other side effects. If the scans are performed too soon, the inflammation the treatment causes may cloud the issue, lighting up your inflammed, but not necessarily malignant, cells like a roadside diner sign at night. You may end up having perfectly healthy tissue biopsied unneccessarily and a PET scan wasted. As I understand it, most oncologists wait until about three months or so later before ordering any scans. Unless, of course, you have some kind of urgent situation that calls for early scanning.

Before your appointment, read the NCCN guidleines on follow-ups. Refer to their "Anal Carcinoma" document. They recommend an 8-12 week follow-up.

By the way, many insurance companies limit your lifetime number of PET scans. Don't waste any! Also, try to keep track of your overall radiation exposure and make the medicos justify why you need a radiation test done when a non-radiation test may do as well.

Hammah said:

We are pretty lucky pal!

I hear everything you are saying RMG. I'll tell you man, that it was a little strange getting treatment down in fla. things that now make me chuckle totally freaked me out down there. one example is when I would go to the place where people sat and either got fluids, or had their ports checked or actually received chemo through an IV it was apparently an event to some of the nurses when a port was removed. One nurse in particular said to me that this was one of her favorite moments to watch which I found to be alittle strange. Course, it was a temporary port sutured to my chest to hold it in place. I don't know why they made such a big deal out of it when it was time for it to be removed, but they did. freaky eh? And here's the real kicker. The first week of chemo they didn't give me the correct amount of meds. The last week of treatment they had given me more than I was supposed to receive. That said, inspite of it all, my weekly bloodwork showed how my treatment was progressing which was a major comfort to me.  Lastly, I don't know about you but I for one will never drink gatorade ever again cause that's all I drank during treatment. I still have all my records from 04 and even the pet scan reports that they did. Prayers and blessings right back at you pal. You're gonna make it. Now it's time for you to take on the rocky balboa attitude and start working on gaining back your strength. walk everyday, or get yourself a total gym like I did. I even got a cool mountain bike with a custom wider seat (if you know what I mean.) I was around 56 when I got diagnosed and am now 66 and probably in the best shape in my life as far as being a senior citizen is concerned. lol. 35 perfect pushups every day as soon as I get up and am still working as a senior mechanical design engineer.

Rock on man!

Dave

Deportation was a very big deal to me.  It was just another reminder of this whole experience in my rearview mirrow.  Besides, the thing was bigger than my boobs, as my husband so kindly told me one time!  LOL! 

Hammah said:

10 years cancer free!

Hi all!

Dave is my name and I would like to share my story with you all of my origional diagnosis back in Oct of 2004 while I was then living in florida. To make a long story short, it was a stage 2 squamus cell carcinoma about the size of a small wallnut and it had started to migrate down towards my lymphnodes. I had 6 complete weeks of radiation treatment at the melbourne cancer center and two complete weeks of chemo. the first week of radiation and the last week of radiation treatments. I had a port attached to the left side of my chest and received 5 days worth of mitimisen (sp) and 5FU for the chemo drugs that were pumped into me directly from an infusion pump that I wore on my right hip. my wife and kids totally supported me and we all agreed that we were going to get through this. My radiation guy was a guy reminded me of doogy houser. lol. He was about 30 but looked like he was 21. It was my great fortune to have both doctors and their facilities as they both had brand new state of the art technology. I won't suger coat anything folks. It was not the most pleasent thing to go through but after completing the chemo and radiation just about at thanksgiving in nov 04 I totally recovered and was declared 100% cancer free around july of 05. What really gave me hope at the beginning was when my radiation dr told me I had a 99% chance of being totally cured of cancer due to the great progress that they had made in 04. So in closing I would just like to say to all of you facing this that with the love and support of your family and your own determination to be strong and fight it you will have a great chance at some day telling some other people that you too have been cancer free for a little over 10 years.

My prayers and well wishes are with you all! God bless and good luck!

Dave

ps. I forgot to mention that it was anal/rectal cancer that I had.

 

 

 

Thank you so much for sharing, Dave.  Yours in the kind of story I like and need to hear.  Congrats on 10 years! 

Ouch_Ouch_Ouch said:

Where's the khakis? I need to go to Havahd Yahd.

Hammah, shouldn't that be Fenway Pahk? I had a friend from NYS that lived a block or two from there on Boyleston Street while attending Berkley - he would pahk in a garahge during Yankee games to avoid vandalism to his cah.

Thanks for the info on your follow-up routine. I received radiation laying on my back, too, as mp327 (Martha) did. The mold was a heavy plastic bag filled with small foam beads, I think, that firmed up and it would be sanitized and reused after I finished treatment. It might be saving someone else's life now as we now speak! I have three tiny greenish-blue tatooed dots - one on each hip and one on my pubic bone. I've wondered about men and pelvic radiation. The skin over the testes is so sensitive and so thin, is some kind of shielding used to prevent burns and infertility?

Thanks.

Sorry it took me so long to respond to this post. totally cracked me up. However, that said, I need to clarify something to all you guys. Us native bostonians aren't the ones with the funny boston accents that drop our R's and drive cahs! It's the rest of the nation that has the funny accents! lol............I also forgot to mention one key element to the whole adventure that I went through. I'm sure all the guys out there that are still here by the grace of the man upstairs are probably doing the same thing I am even now. Because we were given radiation treatments for 6 weeks we pretty much can take it for granted that we will NEVER, and I repeat NEVER get prostrate cancer. Why you may ask? simple answer. our "little prostrates" will be glowing red for the next 10,000 years is why. My Urologist got me started way back with testosterone medication. Obviously, because of the radiation treatment we are no longer able to produce our own testosterone ergo, the equipment may still work, just we shoot blanks now if you catch my drift. I've been on androgel for going on 11 years and it has worked great. My psa reading is still around 0.45 and my total testosterone levels are at mid range to a normal man who never had the radiation. Now I'm using the androgel 1.62 pump and the stuff works so good that physically, I'm holding my own at 6'-0 and 230 lbs. Can still bench 300lbs and a beautiful pair of female legs still gets my motor running. lol. No ED for this guy.

So anybody gonna give me congrats on my Pats winning the supah bowl????

;-) Dave "the Hammah"