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Stage 3b Anal Cancer

EvelynB
Posts: 73
Joined: Aug 2015

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
Posts: 209
Joined: Oct 2013

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
Posts: 73
Joined: Aug 2015

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
Posts: 209
Joined: Oct 2013

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
Posts: 21
Joined: Aug 2015

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
Posts: 73
Joined: Aug 2015

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

jad345
Posts: 21
Joined: Aug 2015

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

EvelynB
Posts: 73
Joined: Aug 2015

Jackie,

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

jad345
Posts: 21
Joined: Aug 2015

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
Posts: 73
Joined: Aug 2015

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.

nicotianna
Posts: 209
Joined: Oct 2013

Hi Jackie -  I am curious about your getting XRT (radiation) for an anal tumor.  Did you receive the standard protocal (mitomycin, 5FU & XRT)?  I was under the impression that the maximum dose of XRT is given in that protocol.

Nic

EvelynB
Posts: 73
Joined: Aug 2015

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

jcruz
Posts: 379
Joined: Jan 2013

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

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mp327
Posts: 4121
Joined: Jan 2010

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
Posts: 209
Joined: Oct 2013

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
Posts: 73
Joined: Aug 2015

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
Posts: 209
Joined: Oct 2013

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 

EvelynB
Posts: 73
Joined: Aug 2015

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
Posts: 73
Joined: Aug 2015

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
Posts: 21
Joined: Aug 2015

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
Posts: 1255
Joined: Oct 2011

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
Posts: 454
Joined: Nov 2012

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

Good luck

Liz

EvelynB
Posts: 73
Joined: Aug 2015

Katheryn,

  How long has it been since your recurrence and how long after initial treatment did it show up? Glad to hear from several people that the colostomy is not so bad. It's hard to imagine now but I guess it's all in what we get used to.

Evelyn 

eihtak
Posts: 1255
Joined: Oct 2011

Hi,

I was initially dx in Jan. 2011 and treated with 5FU/Cisplatin and radiation. I was in a clinical trial involving Cetuximab as well. (I was only part of the trial for a couple doses when unrelated issues with my ostomy adjustment caused me to be taken out of the trial so finished with standard treatment) My ostomy surgery was done prior to starting radiation and was originally intended to be reversed when done but radiation damage has led to it being now permanent.  In March of 2012 I was dx with a rare breast cancer that does not usually show up until late stage, but fortunately it was seen on my follow-up Pet Scan. For that I had a double mastectomy. After that all scans and blood work had been great and I felt good too, until a follow-up scan in Jan. 2015 revealed a mass on my lung the size of a peach!! It was biopsied and determined to be a recurrance of anal cancer. I had surgery to remove the left lower lobe of my lung that contained the mass and 3weeks later followed with a 3 month course of 5FU/Cisplatin again. Although my doctor is confident that the mass was succesfully removed with surgery, the chemo was given at this point as adjuvent to catch any rouge cells. A couple weeks after treatment ended, a scan revealed all clear, yet a blood clot on my right lung. I began injections of lovenox (blood thinner) for two weeks as well as am now on Warfarin until ???? I will be scanned again the end of October, but once again.....I feel great! I used to think that that meant all was good, but cancer is so sneaky that it is often asymtomatic.

So in answer to your question, 7 months since dx with recurrance and almost 4 1/2 years since initial treatment ended.

When and if you end up with a colostomy I have lots of helpful links and tips to share....but know that there is a lot of support out there and a variety of products to help make it work for you.

Be well,

katheryn

EvelynB
Posts: 73
Joined: Aug 2015

Wow. You have really been through it yet you seem to have such a positive attitude. I commend you highly! I hope I can remain positive no matter what the future holds. It definitely helps talking to people on here. It helps me to not feel so isolated and alone. Even though I have a wonderful support system, I sometimes feel very different and separated from everyone around me.

horsepad's picture
horsepad
Posts: 131
Joined: Apr 2012

I was stage 4, mets to the liver.  I had 4 oncologists and no one ever suggested more chemo.  It's been 4 years since diagnosis.  I was told if it came back, they would treat it with chemo.

EvelynB
Posts: 73
Joined: Aug 2015

Horsepad,

    That is so GREAT to hear!!!!!!!!!!!! I am so happy for you!  What a ray of hope you are. Thanks so much for posting.

Evelyn

Krissy59
Posts: 33
Joined: Oct 2013

i too was stage IIIb. I was actually diagnosed by having an enlarged right inguinal node removed. I had no other signs or symptoms other than the enlarged node. I got the standard 5fu and mitomycin protocol and 30 radiation treatments. I never had any additional chemo. I completed treatment 2 yrs and 2 months ago and so far all my scans have shown NED. I am cautiously optimistic. The statistics that I have seen are not great for stage IIIb, but my oncologist tells me much better statistics, which leaves me confused and frustrated. I'm probably strange but I am scared that he won't monitor me as closely or thoroughly since he says the statistics are in my favor.....I'm sure that is just this crazy disease controlling my thoughts!

EvelynB
Posts: 73
Joined: Aug 2015

The one thing I am learning from this experience is to live in the moment. Every time I catch my thoughts wandering, I remind myself that today is all any of us have. This point was really driven home for me one day on the way home from a treatment, we were in a near fatal accident when a sleep-deprived driver(he had been sitting at the hospital for 3 days with a very close relative who had just passed that morning) came through an intersection and hit us broadside.  All we can do is be thankful for this day and hope for the best. (Easier said than done, I know) The fact that you have made it this far seems like a really good sign to me. How often are you having scans?

Krissy59
Posts: 33
Joined: Oct 2013

I've had scans every 6 months but when I had the last one, 5 months ago, my oncologist said we would now go to yearly scans. 

EvelynB
Posts: 73
Joined: Aug 2015

Krissy, According to NCCN.org guidelines, you should be followed with scans for three years.

 

lizdeli's picture
lizdeli
Posts: 567
Joined: Jul 2009

Jackie

I had stage III with mets to the lymph nodes.  I was treated with Cisplatin once a week for 7 weeks and 5FU (24 hrs a day Mon-Fri via pic line and chemo in a fanny pack) for 7 weeks.  Also had radiation 5 days a week for 30 minutes for seven weeks.  I was told that I was being treated aggressively because of the lymph node mets.  I did not have any follow up chemo.  I am 6 years NED.  

What type of chemo follow up is your doctor recommending?  

Liz

EvelynB
Posts: 73
Joined: Aug 2015

Liz,   Wow! Your dr was very aggressive in treating you! You must have really went through a hard time. It looks like it paid off though! I am not sure what he is going to recommend. I was so stunned when he told me, I couldn't even think straight to formulate any questions. Now I have a laundry list of questions so I will go back to him with my list and armed with a little more information. I really wish he had been more aggressive to start with {like your dr was} rather than wanting to tear me down again now.  Your story is so encouraging and inspiring. Is there anything you have done on your own that you would recommend? I have a friend that had stage 4 throat cancer with mets to 4 lymph nodes. She had 7 weeks of radiation after surgery but refused chemo. She is 3 years out and still NED. She is one of the most positive people I know and she constantly tells me not to worry, find joy and happiness in every single day, exercise{which I have done for many years...until now} and eat a healthy diet but not to deny myself of occasional indulgences.  

 

lizdeli's picture
lizdeli
Posts: 567
Joined: Jul 2009

I apologize for confusing your names!  So sorry.  That's what I get for trying to catch up after being away from the board for too long. 

Evelyn, I think you might want to seek a second opinon about the precautionary follow up chemo recommendation since it doesn't seem to be a protocol others have experienced.  I do know someone who had rectal cancer vs. anal cancer who had follow up chemo. Do you know how many cases of anal cancer your oncologist has dealt with?  It's your body and your life so you have every right to ask these questions.

As far as anything I have personally done...throughout the treatment process I became a germophobic.  I wouldn't touch any door knobs, avoided small children and large crowds, washed my hands constantly, only used paper towels to dry my hands, rinsed my mouth with baking soda 3 plus times a day, etc.. I tried to avoid infection.  I was very fortunate and I did not experience any infections, blood levels that would prevent/delay chemo, mouth sores, etc.  The side effects of the chemo and radiation weren't pleasant by any means.  Particularily the radiation.  I re-read Viktor Frankl's book - Man's Search for Meaning - during treatment and worked very hard to strenghten my mind and train it to overcome the challenges during treatment.  I remember memorizing how many minutes and seconds each turn of the radiation machine took.  There were a total of 13 "turns" and I knew exactly how long each each one was. One time the radiation tech told me I was done.  I said, "no I am not, it was only 12 versus 13".  He said yes you are.  Okay, so I get dressed and before I got to the door he tells me, "You were right".  So we had to set up all over again for the last "turn" of the machine which was 1 minute and 16 seconds.  

I lost a lot of weight during treatment and I'm not big to start with.  So after the nutritionist actually yelled at me and told me to eat whatever it took, I did.  I ate what I could tolerate.  McDonald's plain cheeseburgers, vanilla ice cream, gingerale and Greek cookies.  Lived on that for 3 months.  Didn't gain, didn't lose much more weight.  

Most of all - I went into "fight mode".  I also relied heavily on my faith which I feel helped tremendously.

I hope that your doctor provides the answers you need.  Wishing you well.

Liz

EvelynB
Posts: 73
Joined: Aug 2015

Liz,

   You said something in your message that made me FINALLY realize what is going on. I could just hug you!!! My cancer diagnosis was anal squamous cell carcinoma. However, when I had my first PET scan, they sent the report back as Rectal cancer because the tumor had grown up into the rectal area but was not attached. Although my oncologist knew that, he apparently just made a mistake on my last visit because he was thinking it was rectal cancer. I called this morning as soon as I read your message and I just got the call back confirming it was a mistake. WHEW!!!!! Thank you so much!    

I did the same thing you did during my radiation treatments. I counted the turns and seconds between turns. I am going to read Viktor Frankl's book. I've heard it's really good and you've inspired me to read it. My doctors and nutrionist told me the same thing yours told you. Eat whatever you can so, for the first time in years, I've been eating "junk" foods. It has helped me keep my weight up but, I worry about the whole "Sugar feeds cancer" theory. I tried cutting out carbs and sugar because the thought is that if your body is in a ketogenic state, the cancer has nothing to feed on. However, I got so weak and immediately started losing weight so I'm back on carbs at least.  I have to tell you....knowing that you took their advice and ate whatever you could and that you are still NED makes me worry much less.

Thanks again. You have been more help than you can imagine.

Evelyn  

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lizdeli
Posts: 567
Joined: Jul 2009

I was thinking that it was sounding like rectal vs. anal cancer because when they first mis-diagonosed me with rectal that is the type of protocol they were talking about including a colostomy - temporary but possibly permanent.

I am so glad you were able to clarify with your doctor!!!

 

Be well,

Liz

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mp327
Posts: 4121
Joined: Jan 2010

The confusion between anal and rectal cancer seems widespread among healthcare professionals.  I can't tell you how many times I've had to correct technicians when going for scans or tests, as they seem to continue to refer to my cancer as "rectal."  I always take those opportunities to give them a little bit of a lesson as to the difference.

As for the old "sugar feeds cancer" theory, my med onc just rolled his eyes when I brought that up one day.  He does not buy into it at all.  Before that, I was avoiding sugar in any way possible, thinking it was going to increase my odds of staying healthy.  However, like you, I got very weak and had absolutely no energy.  After my visit with my doctor, I started eating carbs and felt so much better.  I think the key is to get the carbs in a healthy way, i.e. fruits and veggies, and not donuts and brownies.  Smile  Sadly, I eat my share of sweet treats!

Martha

EvelynB
Posts: 73
Joined: Aug 2015

All of my doctors, too, said they don't buy into the "sugar feeds cancer" theory. You are right-the carbs should come from a healthy source (and most days they do) but, like you, I have been indulging in a few sweet treats. For so many years, I lived a very disciplined lifestyle and denied myself of these goodies. I did all the "right" things "They" tell you to do and still I ended up with cancer. So...going forward I will probably be a little more moderate. 

mp327's picture
mp327
Posts: 4121
Joined: Jan 2010

I have the same attitude.  After denying myself some of the treats I love for many years and still being diagnosed with cancer, I have changed my thinking.  Life is for living and we need to enjoy it--and for me, that includes food!  My epitaph is to read "Thank God I had dessert!"  Smile

Martha

EvelynB
Posts: 73
Joined: Aug 2015

I love that!!

EvelynB
Posts: 73
Joined: Aug 2015

I just wanted to let you know I just finished reading "Man's search for meaning" and it is sooo inspiring! I recommend that to everyone but especially people going through cancer. Thanks for sharing.  

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Lorikat
Posts: 680
Joined: Jul 2011

I had the same treatment prodicol that Lizideli had.  Cisplatin once a week and a fanny pack of FU5 by pickline 5 days a week and radiation 5 days a week, all for seven weeks.  I was stage II invasive anal Cancer that had migrated into the rectum.  Many docs would refer and still refer to my Cancer as rectal.... The tumor had begun to invade the vaginal wall....

I was incredibly lucky to have Lizideli call me and explain a LOT of things that would have scared me witless, and then to meet her twice in Houston when our appts overlapped.  I will be 4 years NED in October!  

 

EvelynB
Posts: 73
Joined: Aug 2015

Congratulations on being 4 years NED!! Wow! Yours and Lizdeli's treatment was intense! Were you extremely sick during treatment? Since I still haven't had my follow-up biopsy, I am wondering if my treatment should have been more intense. I had the standard Mitomycin/5fu the first and 6th weeks of treatment along with 30 radiation treatments. Pet scan shows tumor responded but not sure if residual is still cancer or just scar tissue. My tumor was a total of 11.2 cm. It had migrated into the rectum and had spread to two lymph nodes.  Although the cancer migrated to the rectum, it is still anal cancer. My first pet scan came back marked Rectal cancer and I think this is what has caused some confusion about the method of treatment.

I'm glad for you that you found support in Lizdeli. She seems very knowledgeable. It's great to have a support like that. Helps not make it all so scary.  

Lorikat's picture
Lorikat
Posts: 680
Joined: Jul 2011

hey Evelyn!  Honestly?  I thought my tx was pretty standard...  Liz and I have the same oncologist, Dr. Eng, and she doesn't pull punches!  And yes, anal cancer migrating into rectum is still anal cancer.

i was pretty sick after I reached the half way mark for tx.  I also ended up in the hospital after I got home from Houston in isolation because I was neutropenic.  Two blood transfusions and LOTS of antibiotics and a wound care specialist got me back on track.  second and third degree burns on my everything from radiation.

I was stubborn and insisted we drive home the day after tx ended.  About eight hundred miles!  I stayed in a motel, sat on my poor burned up bottom for two days of travel, used rest stop restrooms etc....  No wonder I was in such rough shape!  I have to take some of the blame...

EvelynB
Posts: 73
Joined: Aug 2015

I cannot imagine how in the world you did that!!! Your treatment was definitely more intense than the standard. Mine was 30 radiation treatments and Mitomycin/5fu treatments by picline for four days on week 1 and 4 days on week 6.(From what I understand, that is the standard) Do you know how much(gy) radiation you received? I normally have a high pain tolerance but after 30 days, I didn't feel like I could take anymore. My radiation dr said they usually only do 25 days of radiation but they gave me 30 because the tumor was so large.  

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Lorikat
Posts: 680
Joined: Jul 2011

No.  I don't know how much radiation.  Will see if I can find out!

mxperry220
Posts: 475
Joined: Mar 2011

I was Stage 2 and had  30 radiation treatments plus Mitomycin and 5FU.

Mike

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mp327
Posts: 4121
Joined: Jan 2010

The usual radiation dosage per treatment is 1.8 gys.  I had 30 treatments which adds up to a total of 54 gys.  I was right on the fence between stage 1 and stage 2.  Maximum radiation dosage for AC is 59 gys or less, depending on stage.

Martha

EvelynB
Posts: 73
Joined: Aug 2015

 Seems like you have really done your homework! Thanks so much for that information Hopefully it works on stage 3b as well as it has stage 1& 2.

Lorikat's picture
Lorikat
Posts: 680
Joined: Jul 2011

I checked my records...  27 treatments at 2GY TO TOTAL 54 GY.  

EvelynB
Posts: 73
Joined: Aug 2015

Thanks for checking that and letting me know. We had the same amount of radiation. You had alot more chemo than I did, though. Mine was only Monday through Friday on week 1 and week 6.

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