ANY STAGE 3b OUT THERE

Hey Don09 ... word search stage and see what you find On this site ... there are many stage 3B out there.  Okay, Sadly my diagnosis and initial staging was not done well, so I actually can't say for certain if I had nodes or not.. the tumor was small, but frankly the whole process and staging poorly handled.  Anal cancer is so rare, I don't think my first oncologist knew what he was dealing with.  I had questionable nodes on rectal ultrasound, however they never biopsied, so there you have it "presumed stage 1".  To this day I question if I had enough radiation ... so I understand about worry, anxiety, and wondering if there's any hope to make it through all of this to live a normal life again ... 

Yes there is great hope as this cancer responds quite well to radiation and chemotherapy.  I was diagnosed in 2010 and treated early 2011.  I've seen many stage 3B folks here on the site who have done quite well And are not only surviving but are  thriving.   It's not an easy road, but you are not alone here.  

One thing  I'd do differently if I had it to do over (and there are many things I'd do differently, but we do our best in the moment), I'd stay away from looking at prognosis figures and the internet in general.  It's scary and added to my feelings of hopelessness.  We are individual human beings and stages and prognosis figures are numbers.  consider empowering yourself by learning about the best evidence based follow up regime of exams, etc. based on the NCCN guideline for Anal Cancer and make certain you get the best post treatment care ... advocate for yourself As you likely have your whole life and trust your instincts.  I encourage each of us here to ask our care teams for what we need post treatment  ... it's a rocky road and you'll make your own way through it with suggestions from some wise survivors here.  I about killed my self with anxiety and worry by reading every horror story on the internet.  It's not easy, but try to control what you can and perhaps limit reading "too much".  These are just suggestions and thoughts.  I found it helpful to meditate, pray, and seek counseling.  Whatever it is that helps your mind to be quiet  and staying in the moment.   Guided imagery, light exercise ... eat well.  This approach helped me.  Rest When you need it and offer yourself as much compassion as you can. 

I found post treatment to be a tough time because the radiation and chemo we're over and now what?  I felt like I was waiting for the next shoe to drop and fearful all the time ... not much structure or direction like during treatment.  It helped me to think about my diet, exercise, guided imagery, meditation as "ongoing treatment" that I could control  ... and a daily schedule helped me Or I would find myself fretting, anxious and afraid of what might happen. Maybe you'll find comfort in a schedule too.  I scheduled my worry and limited it a set time ... I needed to get it out,  but tried not to let it overwhelm me.  

It's not possible to remain positive all of the time and don't let anyone beat you up when you have days when you just can't muster a positive thought.  Allow yourself to be where you are ... but try to keep moving forward.   its not humanly possible to be upbeat all the time ... we're human. 

long and short ... I've seen many survive and thrive from stage 1 to stage 4 ... yes, there are stage 4 survivors here too.  So there is great hope for you...for us all!  You are a strong human being going through a tough disease and its not easy.  

Hang in there ... I'm happy to share anything about my process this past 6 years.  Anything to help!  I hope I didn't come off preachy or like I'm telling you how to do this cancer thing ... or that it's "easy to have or find hope" ... it's not to he sure.   I think we're all just trying to do the best we can each day.  

happy to help any way I can ... it seems like yesterday that I finished treatment.  I'll never forget my struggles.  

Sending lots of hope your way!   Sorry about waxing on ... but I recall when cancer was all I thought about.  It gets better with time and with each successful follow  visit.  One step at a time. 

I was diagnosed with stage 4 cancer in 2011, mets to my lympth nodes and liver.  I had standard chemo and radiation and a liver resection.  I am doing great!  

I was 3B and now at 3yrs., 2 months NED. 

my heart goes out to you..... so sorry that your mom is having so much trouble......the pain really is unbearable at times..... she needs nutrition so i do not know how to get that into her.....try lots of boosts and muscel milks ..... which i am sure you have already tried...... prayers.....try to find another doctor????   place a silk pillow cover under her so that when she moves , it wont pull on the tissue..... get a small fan to place between her legs to blow on the area....thinking of you....sephie

Scared and Lost Daughter in SC said:

3B Rectal Cancer

My mother is 72 and was diagnosed with stage 3B in January. I came here today absolutely desperate and praying I can find answers regarding her severe radiation burns. I am a 26+ year cancer survivor (cervical) but God spared me from undergoing chemo/radiation treatment. 

Mom had her last radiation treatment almost 4 weeks ago, but 4 days after her last treatment (the last 4 being boosters), she became so weak she fell trying to get to her bedside potty and could not get up. She has been in hospital 4 weeks as of today and is not getting much better. I am afraid and lost and angry (long story, but she was not diagnosed for 2 years because her initial GI doctor refused to perform a colonoscopy because she required 2 liters of oxygen and he claimed she could not survive anesthesia), and now she is almost totally immobile, in excruciating pain, on a catheter, and was transferred to a "rehab" center 3 days ago. 

I sincerely apologize for rambling, but I don't know what to do to help her.  She was on fentanyl patches and morphine injection in hospital, but rehab does not use injections only liquid morphine as needed, although they're pushing oxycodone instead but will administer morphine if the oxy does not work within a few minutes. I have not been comfortable with her treatment there so far,as I seem to have to constantly run behind them making sure they medicate her and keep being careful with her severe radiation burns that cover her entire bottom and around to her "lady parts". 

I need any suggestions about treating her burns and getting her to start moving again. She screams out in pain when she moves, so she doesn't want to do anything to cause pain, so she doesn't want to participate in physical therapy or walk. She barely eats and had to be removed from her picc line feeding tube before getting to rehab, so she is not getting proper nutrition.

How can I help?? She still needs surgery to remove the tumor, but 4 weeks out from radiation/chemo, she is in rehab and in no shape for walking, much less surgery.

I am so very sorry I hijacked this thread, but I realized it too late and since I am using my Kindle, I have no idea how to copy/paste it in proper place. I pray, however, that someone can offer me some much needed guidance. I offer my sincere prayers that each of you and your families are happy and healthy. God bless and thank you for any suggestions on helping my mom.

I just want to say how sorry I am for your mothers situation (as well as yours) right now. At the worst of my pain (over 6 yrs ago) I was on a regular pain mangement schedule of oxycontin time release tablets every 12 hrs as well as oxycodone as needed in between for break through pain. It took a couple med increases to get to a good place, but once there I was finally able to both sleep and eat. I took the oxycodone at about 4 hrs after the oxycontin whether needed or not for a while as a way to stay ahead of pain. It seemed like a lot, but this level of pain can be horrific for some and as you stated nearly impossible to participate in physical therapy until under control. (At that point I too was in a nursing home / rehab facility that now looking back seemed less than educated on my needs so be persistent as you are the best advocate for your mom) Please continue to request a med increase and don't feel bad in doing so. It won't be for too long, and was not difficult for me to wean off of once feeling better. It is however very important to prevent constipation caused by these pain meds so I was also taking a daily stool softener.

I will have you both in my thoughts and prayers as you work through this.

katheryn

Bjc57 said:

stage 3b

I was diagnosed stage 3b in Feb. 2015. I had one positive deep pelvic lymph node (left obturator). After chemo/rad, I have been NED since. I am a member of a female anal cancer survivor chat group and there are several of us in there that were 3b with most of us doing well.

Would you send me a link to the female cancer survivor chat group?  I'm new to this group and would love to join some others.  I was stage 3, don't know what letter.

thank you

Jane

I had a very large tumor, 7 cm, and it was in my lymph nodes.  Every time I went to a new dr appointment the tumor just kept getting bigger, I was so upset that I couldn't even handle knowing what letter came after the 3!  I still don't want to know.  And, I understand eactly what you are asking, I had so much hope when they said it wasn't colo-rectal cancer since anal cancer was so easily treated, then I found out mine was late stage and wasn't necessarily so easy to treat.  I also finished treatment in Jan of this year, so we are on the same track.  I'm holding your hand through the computer!

Jane

It sounds like we are on the same page and timeline. i was diagnosed with Stage3b anal squamous carcinoma and began the chemo and radiation therapies on 9/25/17. The week before when I met with my medical oncologist, he took both of my hands in his and looked me straight in the eyes and said "This is highly curable". I know there are no guarantees but I have great faith in the protocol which ended 2 weeks ago. The radiation was hell with excruciating pain. Every one of my professionals did everything in their power and medical Rxs bags to help,with the pain. I wound up in the hospital for 8 days because of the devastating effects on my blood. Every professional I spoke to gave me the absolute unvarnished truth about what to expect. They said I would start to feel the side efffects ebb about 2 weeks after treatment ended And they were right. I'm having more good days than "iffy" ones but the fatigue is still there and will be for quite awhile. PET scans won't be done for awhile so I don't know if the treatment worked but I'm VERY hopeful. Hang in there. 

Bjc57 said:

stage 3b

I was diagnosed stage 3b in Feb. 2015. I had one positive deep pelvic lymph node (left obturator). After chemo/rad, I have been NED since. I am a member of a female anal cancer survivor chat group and there are several of us in there that were 3b with most of us doing well.

I'm new here. Stage 3b. Just have 1 week of chemo and radiation treatments left and I was sooo happy to see you've made it to 5 years.

Laura

lizdeli said:

Stage 3b Survivor

i was diagnosed as stage 3b in 2009 with mets to my lymph nodes. Happy to say 8 1/2 years later I am doing fine. 

Liz

So glad to see you back here and know that you're doing well!