Stage 3b Anal Cancer

Hi Evelyn - Congratulations on completing your treatment!  It's rough.

In short, my advice is to go after the ca w/full amunition.  The thought of putting toxic substances in our bodies is distasteful!  However, cancer will take over your whole body if you do not aggressively treat it.

My story is a little long.  I had IIIb which prgressed ti IV.  Chemo was/is tolerable.  Each person is different.  You have a vvery aggressive cancer.  Take your oncologist's advice.

Nic 

EvelynB said:

Thanks, Nic. I appreciate the

Thanks, Nic. I appreciate the advice. Did yours progress to stage IV after secondary chemo treatments? By secondary, I mean additional

 chemo treatment after the initial 6 week chemoradiation?

 

My PET/CT at 9 mos. post XRT showed a nodule in the lung (previous ones at 3 & 6 were neg.).  Oncologist recommended chemo & did not mention a biopsy.  I chose surgery.  Two + nodes & nodule + for AC.  The oncologist recommended no chemo.  Seven mos. later mets noted in lungs.  Now on chemo which began 18 mos. after my last dose of XRT (radiation).  I had rec'd the standard chemo & XRT protocol.  The radiation keeps giving but cannot remember exactly how long.  Because I did not have additional chemo later I was unaable to be a candidate for a particular clinical trial.

Hope this helps!

Nic

EvelynB said:

To jad345

What is/was the treatment for the recurrence in the lung and how are you doing now?

Well after the first mets in the lungs they gave me 4 cycles of cisplatin and 5fu. That shrunk them somewhat then about 6 months later I had taxol which worked on the lungs but the anal tumor srarted growing again so they stopped the taxol and gave me radiation. That was in May - I have an appointment on Monday to see if there is some other chemotherapy they can try. Hope this is helpful to you.

Jackie

jcruz said:

interesting

I have not heard about more chemo after treatment.  Because of complications including a pelvic infection and the need for a gyno surgery at the same time as my initial biopsy the doctors could not accurately say what stage I was.  My inguinal nodes may have been involved or they may have been responding to the infection.  I also had a second primary tumor just beginning to raise its ugly head on my vulva but the doctors initially were uncertain if it was a part of the anal tumor or a second primary tumor.  My oncologist said the treatment would be the same stage 1 to stage 4 so I shouldn't be concerned about knowing the stage. Anyway, long story but as I look back I would guess that my cancer was stage 3B. Nothing was said about chemo follow-up.  I had PET scans every 6 months for the first 2 years and now I have a CT once a year.  I've had two biopsies that showed nothing except scar tissue.  

If it were me I would certainly be questioning the chemo.  I am curious to know if anyone else here had that as part of follow-up.

Janet

I just checked the NCCN guidelines and there is no mention of follow-up chemo in cases where testing indicates the tumor/lymph nodes are clear.  However, after initial treatment, evidence of metastatic disease would be treated with additional chemo of 5-FU and Cisplatin.  You can access these guidelines yourself at www.NCCN.org after completing a short registration.

Martha

EvelynB said:

Jackie

Jackie,

    Have they talked about colostomy? I know it's not an attractive option, but is it an option?

I had a colostomy before my first treatment. They said it was reversible but after my treatment the doc said I had too much scar tissue and it would't be a good idea to reverse it. It was just as well because I had to have more radiation. I have to say that a colostomy isn't as bad as you would think. I'm pretty active and I've been swimming with it and doing other exercise as well. It is really just a minor inconvenience.

Jackie

jad345 said:

colostomy

It would be interesting to see what type of chemo your doctor has planned for you. When my cancer reoccurred I had cisplatin/5fu for 4 cycles. I had a week of tiredness and a bit of nausea each cycle but in between I felt fine.

If you do need to get a colostomy don't worry - after a month or so you won't even think about it!

Jackie

My story is very similar and just want to ditto on the ostomy.....not much of an issue once you get in a routine and find products that work for you.  I've had my ostomy for 4 1/2 years now and can truely say it seldom interfers with any of my plans and is easily managed.  There may be an occasional bad day with skin breakdown, gas, or minor clothing issue, but 99% of the time it is not a problem.  My chemo for recurrance was 5Fu/Cisplatin as well and that was following surgery to remove the lower lobe of my lung.  I too had a bad week each cycle followed by feeling mostly well until the next.  My hair and nails suffered terribly about 2-4 weeks AFTER the last treatment which I did not expect.  All on the mend now!

katheryn