Stage 3b Anal Cancer

EvelynB

I just finished treatment for Stage 3b Anal Cancer about 7 weeks ago. My first Pet Scan shows the lymph nodes are clear, and the tumor has shrunk significantly if not completely. I will have a biopsy in a few weeks. I have been feeling very optimistic about the outcome as I have been feeling great other than being tired. However, after meeting with my chemo dr yesterday, he told me that, even if my biopsy is cancer free,  I will still need to do intense chemotherapy to (hopefully) prevent recurrent cancer elsewhere in the body due to inguinal lymph node involvement in the beginning. Of course (he said) there are no guarantees-it's a precaution he likes to take. My question is this: Has anyone else had this follow-up chemo treatment?  The thought of putting more poison in my body after all I've been through these last few months just seems unbearable. Any thoughts?   

nicotianna

IIIbAC

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

nicotianna said:

IIIbAC

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 

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?

 

nicotianna

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?

 

IIIbAC

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

jad345

nicotianna said:

IIIbAC

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

IIIb

Hi

I also had IIIb anal cancer. I was given the all clear but was not offered any follow up chemo. After about 10 months I went for a check up and was told it had spread to my lungs so now I'm stage IV. I think if I were you, I'd take the doctor's advice, although it never hurts to get a second opinion.

EvelynB

nicotianna said:

IIIbAC

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

Thanks, Nic

Yes, your reply is helpful. Thank you so much.

EvelynB

jad345 said:

IIIb

Hi

I also had IIIb anal cancer. I was given the all clear but was not offered any follow up chemo. After about 10 months I went for a check up and was told it had spread to my lungs so now I'm stage IV. I think if I were you, I'd take the doctor's advice, although it never hurts to get a second opinion.

To jad345

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

jad345

EvelynB said:

To jad345

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

lung treatment

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

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

mp327

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

Follow-up Chemo

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

nicotianna

mp327 said:

Follow-up Chemo

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

Follow-up chemo

It's good to review NCCN guidlines!  I am looking at the 2014 one.  In the footnotes of ANAL-3 it states that persistent disease may contine to regress evan at 26 weeks.  Also, says it may be appropriate to follow closely for evidence of progression of disease.  It seems too soon to make a decision about chemo at 7 weeks according to the 2014 NCCN guidlines.

Nic 

EvelynB

jad345 said:

lung treatment

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

Jackie

Jackie,

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

EvelynB

mp327 said:

Follow-up Chemo

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

Thank you!!

Martha,

   Thank you so much for this information! I didn't even know about these guidelines. I am definitely feeling a little more encouraged.

EvelynB

nicotianna said:

Follow-up chemo

It's good to review NCCN guidlines!  I am looking at the 2014 one.  In the footnotes of ANAL-3 it states that persistent disease may contine to regress evan at 26 weeks.  Also, says it may be appropriate to follow closely for evidence of progression of disease.  It seems too soon to make a decision about chemo at 7 weeks according to the 2014 NCCN guidlines.

Nic 

Nic

Nic,

  Thank you for that info! My oncologist was unhappy that my surgeon is waiting 9 weeks to do biopsy but I, too, had read that can regress up to 6 months. I agree that this is very premature to be talking about chemo again. I have lost so much weight and I don't know if my body can take more at this point.  

nicotianna

EvelynB said:

Nic

Nic,

  Thank you for that info! My oncologist was unhappy that my surgeon is waiting 9 weeks to do biopsy but I, too, had read that can regress up to 6 months. I agree that this is very premature to be talking about chemo again. I have lost so much weight and I don't know if my body can take more at this point.  

weight loss & chemo

Evelyn - I found the initial chemo w/mitomycin & 5FU/XRT much more difficult to tolerate than the chemo (cisplatin & 5FU).  I recommend a Nutriton consult.   Take good care of yourself!

Nic 

jad345

EvelynB said:

Jackie

Jackie,

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

colostomy

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

EvelynB

jad345 said:

colostomy

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

Colostomy

Jackie,

   That is good to hear that it is not so bad because I know there is a strong possibility that a colostomy is in my future. Right now that seems so daunting to think about but I guess things are never as bad as we think.

EvelynB

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

Janet

Janet,

   Thanks so much for your encouraging story. What is really confusing to me is that no one ever mentioned the follow up chemo at any time. In fact, on my last visit to my oncologist (prior to this one), he actually said"Well my job with you is pretty much done" and then he floors me with this! He said this chemo would be much more intense than the chemo I took the first time. I will definitely keep researching and asking questions.  

  

jad345

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

eihtak

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

chemo, colostomy, and all that jazz.....

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

pializ

eihtak said:

chemo, colostomy, and all that jazz.....

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

EvelynB

Whilst follow chemo isn't standard practice, I wonder if there is any research out there indicating it's worth? 

Good luck

Liz