Initial diagnosis: stage 4 anal cancer, anyone else?

effie Member Posts: 1

Hello, I'm new to this network.  My cancer is very rare, only 1 - 2% of all gastroenterological cancers.  I was diagnosed in November 2016 and told my cancer was contained.  However, my PET scan in December, revealed mets in the liver and the lung, putting me at stage 4.  One year after a clean colonoscopy, I experienced some rectal bleeding which is what sent me to my doctor.  She thought it was hemmorrhoids.  Several months later I experienced some bowel changes (severe constipation with an eventual return to normalcy) and my doctor agreed I should see an enterologist.  Otherwise I felt fine and I continue to feel both energetic and healthy.   I just began FOLFOX and continue to work and go about my daily life the same as usual.  However, at the end of my second treatment, I had an allergic reaction: my throat, face and glands swelled up. However, I didn't go to the ER because I was able to breathe.  Currently, I am discussing with my doctor how these symptons will be dealt with at the next treatment.  

I've done enough research to know the following:  if you read the statistics, they look dire; statistics are at the very least five years old; statistics don't include anyone diagnosed before the five year studies or living beyond five years; no one can say where any indiviudal will fall on the statistical curve; many stage 4's of all kinds cancer exist, cancer-free, five years (the official "cure" timeline) and well beyond.  Current thinking by some doctors is that cancer is a chronic condition.  For a lucky few, cancer once treated, doesn't return.

I'm doing both conventional and complimentary treatments to the extent that it doesn't undermine the chemo. I've been in touch with only two stage 4 people with anal cancer.  One person is cancer-free five years beyond her diagnosis and the other is ten years out, currently in remission, in spite of also being HIV positive and living 30 years with that diagnosis.  I was found to have the HPV virus but never had any HPV symtoms any time in my life including currently.

Anyone else out there with anal cancer? I'd love to hear from you. 


  • malkin
    malkin Member Posts: 7
    edited March 2017 #2
    stage 4

    Yes, I have stage 4 anal cancer metatstatic to my liver (right away on the initial diagnosis in May 2016).  I have too many liver tumors to be resectable (according to both MSKCC and JHU). Please see the thread under:

    CT/PET scan versus CT contrast

    I have had six cycles of cisplatin+ 5FU leading to clean PET and 70% interval decrease of tumors in CT scan (RECIST1), and now I have had six cycles of Opdivo starting in late December.  I will have new scans next week to know if Opdivo is working or not although six cycles (12 weeks) may not be enough.  My anal tumor disappeared due to the six cycles of systemic chemo, but a small anal bump has returned in the last one month.  I am hoping that it is an immunotherapy induced pseudoprogression ('tumor flare'), but am not sure.  So little is known about how these PD1 inhibitors (or do not work) that even the physicians are not able to say much.  I have had no radiation at all so far.


    You will find essentially no support in this forum for stage 4 anal cancer.  All the posts are essentially for stage 1 people, and the stage 4 disease is a totally different beast.  I have had little response to my postings on my stage 4 disease as you can see yourself.

    Good luck.

  • pializ
    pializ Member Posts: 508 Member

    I am sorry that you gave also found yourself here, but as you are, you may as well know that without the support given, I would have struggled through treatment and with subsequent 'wobbles'. I was at stage 3A (at the time of diagnosis it was thought to be 3B). I finished my treatment 25th January 2013 And am in UK.

    I rarely post these days, but pop in to see if I can add anything helpful.

    Best wishes




  • mp327
    mp327 Member Posts: 4,440 Member

    I welcome you to this site, but I am very sorry to hear of your stage 4 status.  I do believe this forum is supportive to all members, including those with stage 4 anal cancer.  I disagree that all posts are for those with stage 1 disease.  However, none of us are doctors and can only offer suggestions based on our own experiences or what we learn from others in this group.  My disease was staged right on the fence between 1 and 2, so I cannot speak from personal experience about stage 4 disease and would not attempt to.  However, I do know that many people who have a recurrence with mets to liver or lungs have had successful treatment.  I have always said that if I was in that position, my first call would be to Dr. Catherine Eng at MD Anderson in Houston.  I do not know where you are located or any details about your situation, other than what you've posted above, so I don't know if this would be an option for you or not.  Perhaps you are already receiving the same treatment that would be offered to you in Houston.

    I don't know if your reference to statistics comes from SEER or not, but you are correct--cases are followed for only 5 years.

    I hope you'll keep us posted on how you're doing.  There are people on this site who are very supportive.  I wish you all the best.


  • Lorikat
    Lorikat Member Posts: 681 Member

    i am five years out and NED.  I was staged between 2 and 3....  went to MD Anderson and Dr. Eng is my Doctor.  Please do NOT give up...  I have talked to ladies with stages 3 and 4 anal cancer and are doing well!

  • sherry123
    sherry123 Member Posts: 26
    Good luck

    Not all disease doctor knows how to treat, some they don't even know if it's a disease or not, if they don't know, the treatment only harm you, cancer treatment is a little awkward to me, why you got treatment make you feel worse. How many patients are wrongly treated, there's little transparency in this industry. Many medicine are adictive, please be aware of this. My father had many liver tumors, in the past doctors treat him as cancer, after 5 years his tumors didn't change much, they stopped cancer treatment, for they knew for many people liver had tumors when they're born, fortunately he didn't have surgery, which made him lived 10 years longer. But he got tremor from cancer treatment, he need medicine for rest of his life. If you sent a health person to hospital, he can die very soon, everyone can fail medical exam here or there, for people have different body type. The cause of you disease is your daily life, which doctors don't know and can't do anything about it. It's very important to have a balanced life.

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited March 2017 #7

    Hi, I too welcome you to this site, yet add that I am so sorry for the need to be here. I hope you are able to get the support that is so important as you move forward. I was initially dx in 2011 with Stage 3b anal cancer and at that time was unaware of this forum.....I sure would have welcomed the tips and advice offered from others who have been through this as it would have made me feel less alone in navigating this unknown territory. My treatment was tough but in my mind successful, then in 2015 I was dx with anal cancer mets to my lung. After surgery to remove the lower lobe that contained the mass I was once again treated with an aggressive course of chemo (5FU / Cisplatin) and as of today am doing well. Tomorrow is unknown ....... as it always has and will be.

    It has been my experience that there are quite a variety of people that post here.....some more regular than others and some less often. I myself come and go depending on other life circumstances. I like to think that possibly the reason for more of the members being of lower stages is because anal cancer is being caught early, rather than a later stage as in my or your case (as well as others), and that is a good thing! None-the-less, we all offer support when we can.

    I rarely follow statistics as for me personally, whether cancer or otherwise, my life just always seems to be what in formal stats is referred to as the outlier....usually distant from the mean observations. Statistics are, as said not followed long enough here, often out-dated, and so easily skewed as it is nearly impossible to have accurate data regarding details of other life factors that would have impacted the outcome of a cancer dx or treatment.

    My initial tumor was not tested for HPV but when dx with mets to the lung, the tumor did test positive. The HPV virus can be carried for decades with no symptoms and comes and goes throughout life. We are still learning....thats how life works. We knew nothing of this 20 or 30 years ago, so I have let that aspect go knowing that thankfully we may have learned and can pass helpful information on to those in the future....again, thats how how life is supposed to work.

    I will surely have you in my thoughts as you learn what you can, share what you wish, (and expect to recieve back) and move forward in life. You will be in my prayers for a future of health.


  • tanda
    tanda Member Posts: 174 Member
    edited March 2017 #8

    Hi Effie,

    Glad that you have found us, but sorry you have to be here.  You will find alot of support here, especially about home-care for managing treatment side effects and just for holding your hand along the journey. cancer section) has several Stage 4 members...some in immunotherapy trials at MD Anderson or some of it's satellites...others have finished treatment and are doing very well. It is also a very friendly, supportive and knowledgeable site.  

    Another possibility might be some of the Colon/Rectal cancer sites.    Rectal cancer, although not squamous cell, often initially gets treated with chemoradiation.

    Most of the sites are for colon cancer patients, but occasionally there are a few anal cancer patients (i.e., Colontown)  I just heard about colontown, which has different neighborhoods and one is for us! Maybe check it out.