Stage 4 Anal Cancer?

I have stage 4, mets to the liver. I have been offered very little hope. I do chemo every 2 weeks and apparently will do so indefinitely. Sorry to be depressing, but sometimes I just feel so hopeless, especially when I'm in pain.

I had stage 2 in 2013 - it was hard but not nearly as difficult as your stage 4 journeys.  I am praying for your continued survival, strength, and less hardship/pain.  

Hi.   My sister is 54 and was diagnosed with stage 4 anal cancer.    Unfortunately she has a biopsy that didn't go well and has a 16 cm wound surrounding her anus. So her disease is harder to treat as she can't sit, and has to lay on her sides.  I am her caretaker.   We live in Florida and go to Moffet.  Her cancer is extensive and in her pelvic lymph but no where else.    That said she just completed carbo/taxol and showed no change.  Nothing.    They did not go ahead with her December chemo and yesterday the doctors want to try immunotherapy.     I was devastated because I wanted her to switch to different chemo.  She isn't a candidate for radiation right now because of her open wound and the tumor size.   Anyone else have a similar story?    And any insight into immunotherapy.   I'm scared because I don't want it to spread.  She is " stable".   Her drug will be opdivo.     Thank you.    And I just want to add people don't like to discuss anal cancer.   I literally have to say "it's what Farrah Fawcett had". And then it rings a bell.    It's there.   And I wish there was no stigma with this cancer.   I tell everyone to get colonoscopy and check for any changes.   But boy do people just zip up when i say "anal cancer". Yes anal.   We all have one.    ?????. Tract

gododgers said:

stage 4

I have stage 4, mets to the liver. I have been offered very little hope. I do chemo every 2 weeks and apparently will do so indefinitely. Sorry to be depressing, but sometimes I just feel so hopeless, especially when I'm in pain.

Hi.  I want to say that I completely understand how you feel.   I feel the same way and it's my sister who has stage 4 cancer.  I am learning that there are so many people with that stage who live many years.   my sister goes to Moffit In Florida and they always see patients who live with their disease.    i am hoping my sister will. Be one of those.    please know that you are not alone.     I want so much for my sister to get a good response so I completely understand your feelings.   Share.  And know you are not alone here

horsepad said:

sorry for your diagnosis

I am a stage 4 cancer survivor for 9 years.  I was diagnosed with mets to lympth nodes, liver.  The treatment was rough and the side effects improve over time.  I am doing great and feel blessed and grateful.  

it is really great to hear that you are doing well, definitely provided me with hope.

Tracyandjulia said:

My sister is stage 4. And her chemo carbo/taxol no change

Hi.   My sister is 54 and was diagnosed with stage 4 anal cancer.    Unfortunately she has a biopsy that didn't go well and has a 16 cm wound surrounding her anus. So her disease is harder to treat as she can't sit, and has to lay on her sides.  I am her caretaker.   We live in Florida and go to Moffet.  Her cancer is extensive and in her pelvic lymph but no where else.    That said she just completed carbo/taxol and showed no change.  Nothing.    They did not go ahead with her December chemo and yesterday the doctors want to try immunotherapy.     I was devastated because I wanted her to switch to different chemo.  She isn't a candidate for radiation right now because of her open wound and the tumor size.   Anyone else have a similar story?    And any insight into immunotherapy.   I'm scared because I don't want it to spread.  She is " stable".   Her drug will be opdivo.     Thank you.    And I just want to add people don't like to discuss anal cancer.   I literally have to say "it's what Farrah Fawcett had". And then it rings a bell.    It's there.   And I wish there was no stigma with this cancer.   I tell everyone to get colonoscopy and check for any changes.   But boy do people just zip up when i say "anal cancer". Yes anal.   We all have one.    ?????. Tract

Hi,

I'm wondering how your sister is doing? I was dx with stage 3b anal cancer 10 years ago and my chemo at the time was cisplatin and 5FU, after a recurrance so (mets) in my lung that required surgery and later radiation, my doctor who I highly respect said that opdivo is a good option if needed in the future. 

With my initial tumor in the anus, I did have surgery prior to the radiation treatments to place an ostomy. It was hopeful to be temporary but because of healing and radiation scarring it became permanent. It took some adjustment but now years later seems so normal to me. Im not sure if this is an option for your sister but it sure relieved pain at the time!!

I agree on the reaction people often give when they here the dreaded word "anal"...at first it bothered me and I'd sometimes say lower colon, but then became more like "no, its anal cancer" and we all have one, maybe its good to scare people a little and also to raise awareness.

Your sister is lucky to have you for support, kuddos to you!

I will keep you both in my thoughts and prayers for healing and wellness.

katheryn

winnie25 said:

anal cancer

Hi hon. I had stage 3/4, 4/29/19   I wonder if you also have constant diariha. im sorry can't spell it' and off and on bleeding 24-7? Do any of you also still have this a year after treatments?

 

Winnie,

I’m a stage 3b anal cancer survivor of 4 years. Doc told me it would take a year to get to “normal” diet, bowel movements and be healed. It took more like 2 plus years. Now, I’m pretty regular and can eat most foods except greasy foods, too much sugar and prepackaged foods. Best to stick with cooking organic veggies, lean meats and eat fresh fruits at least with my experience. You still might have episodes on occasion, but things definitely get better with time. Bleeding episodes are rare. Diarrhea only happens once in a while but an Imodium tablet brings things back to normal. Have faith. Time will make things better. Wishing you a healthier, happy 2021.

Fengshoe said:

anal cancer

Winnie,

I’m a stage 3b anal cancer survivor of 4 years. Doc told me it would take a year to get to “normal” diet, bowel movements and be healed. It took more like 2 plus years. Now, I’m pretty regular and can eat most foods except greasy foods, too much sugar and prepackaged foods. Best to stick with cooking organic veggies, lean meats and eat fresh fruits at least with my experience. You still might have episodes on occasion, but things definitely get better with time. Bleeding episodes are rare. Diarrhea only happens once in a while but an Imodium tablet brings things back to normal. Have faith. Time will make things better. Wishing you a healthier, happy 2021.

Thank you Fengshoe. Means alot you responded

Hi,

Fear is nasty devilish work and if only we could flip a switch and turn it off but it doesn't seem to work that way does it?

I have been in your spot...In my case it was 4 years after initial treatment of surgery/chemo/radiation. I was feeling fine other than a dry cough which I related to cold winter air and heat turned up in the house. I had a scheduled follow-up appointment which included a scan because I was also treated for breast cancer right after the initial anal cancer. The scan showed a large tumor on my lung which proved to be an anal cancer metastasis that had spread which is then labled as stage 4. It is so scary to hear that, I know.

Mine was large but contained in the left lower lobe and was treated by doing a lobectomy (surgery to remove the entire left lower lobe) followed by chemo once again. This news had me more fearful than I can put into words and no one in my circle (and I have a really great circle of family and friends) anyhow, no one quite got where I was at. In hindsight, I guess thats good because the only way to get it is to have been there and I wouldn't want that for any of them.

The surgery went well and I was only in the hospital a couple days then just a few weeks later began the chemo. It was tough again, but somehow slightly easier than the first time maybe because I wasn't also dealing with radiation issues this time.

My initial anal cancer dx was in 2011 and this was in 2015...take a deeeeeep breath and consider whatever options your doctors are giving you, then make a decision and don't look back except to pat yourself on the back for getting through this...and you WILL!!

Everyone is different and we all find ways to cope, for me, a few extra moments of candid conversation with God sends that devil driving fear for a run in the opposite direction.

Please stay in touch and keep us posted as to how you're doing and know that you'll be in my thoughts for that sense of peace and wellness as you move ahead.

katheryn

For those of with Stage 4, are you on a chemo regiment for life?

I did chemo and radiation when I was first diagnose. During my 6 month scan they found a spot on my liver. I had a liver resection. 

For good measure, they had me complete 4 chemo treatments every 21 days.

i have been given the option to continue with the chemo indefinitely or stop chemo and have scans done every 3 months.

if the cancer comes back, then I would go back on chemo treatments.

Looking here to find out what others have decided when given this choice.

Thanks for your input.