SCC metastisus

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petroglyph
petroglyph Member Posts: 41
edited February 2015 in Anal Cancer #1

I am headed to the Mayo in Phoenix next week. Last Feb. I had a radical neck resection for SCC head and neck. I have a lot of pain in the perineum, between and usually including the scrotum inside me area, and often the anus as well.

I have tried for months to get a dr, to determine why my perineum hurts so much. I am not medically knowledgable but I am learning more than I ever wanted to know about cancer.

What made anyone think that maybe you had anal cancer? My question is, is there a great deal of pain in that area? I also have old scar tissue from a colon resection in '95. My psa is really low, last test it was .04, it had dropped for whatever reason after neck surgery.

It seems I am mostly trapped at home do to the pain, I even sit on ice packs to go only a short distance from home. My life is absolutely on hold until something changes in this area, I am nearly dysfunctional. Today, it hit 90* for a little bit and I got in a pool and wandered around for awhile trying to get some exercise. I was walking every day until about 6 weeks ago, but the pain seems to get worse after exercise as it did today.

I found it dissapointing that I had to find out [from the internet] that one place SCC can go to is the anus. My head and neck SCC was with unknown primary and although they wanted to give me radiation with the mask, I declined as even with all the biopsy's the tumor location was never pinpointed.

Any thoughts on the pain? I am not panicking, assuming this is a cancer flair up, although as we all know sometimes it is hard to keep our heads right. I also have an eschemic colon since my resection [I guess]. I have mostly been constipated for years but had a colonoscopy 5 years ago and removed a tiny polyp. I still have the photo from that procedure and I am so glad I was able to produce it to my local gastro-enterologist. 

For now if anyone has had this kind of pain or felt it near that area, I would be thankful if you could share your experience. TIA

If this topic is already been commented to bits, I apologize. I feel too weary for a lengthy search right now.

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
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    petroglyph

    I have not heard of a case of H&N squamous cell cancer metastasizing to the anus, but with cancer anything is possible.  It is also possible that the anus is your unknown primary location, but I don't know how likely that would be either.  At any rate, since you are in pain in that area, my best advice would be to seek out a colorectal doctor who is experienced in the diagnosis and treatment of anal cancer.  You should ask for a digital rectal exam and an anoscope, which is a short scope used to view the anal canal.  A colonoscopy is not the best type of test to view the anal canal, as it is often overlooked in that exam.  An anoscope is a short scope designed with a "slot" that is illuminated and turned once inserted to view the entire area 360 degrees.  Tell them all of your symptoms.  Have you had any bleeding?  That was my wake-up call, although after diagnosis, I realize that I had other troubling symptoms that I did not think indicated cancer, but now know they were most likely related.  When I would have a BM, I never felt completely emptied out.  I suffered from chronic constipation and abdominal cramps, bloating, weight loss and fatigue.  The bleeding was what finally got me to see a doctor.  I would urge you to get thoroughly checked out and I hope anal cancer can be ruled out.  Good luck and please keep us posted.

    Martha

  • petroglyph
    petroglyph Member Posts: 41
    #3
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    mp327 said:

    petroglyph

    I have not heard of a case of H&N squamous cell cancer metastasizing to the anus, but with cancer anything is possible.  It is also possible that the anus is your unknown primary location, but I don't know how likely that would be either.  At any rate, since you are in pain in that area, my best advice would be to seek out a colorectal doctor who is experienced in the diagnosis and treatment of anal cancer.  You should ask for a digital rectal exam and an anoscope, which is a short scope used to view the anal canal.  A colonoscopy is not the best type of test to view the anal canal, as it is often overlooked in that exam.  An anoscope is a short scope designed with a "slot" that is illuminated and turned once inserted to view the entire area 360 degrees.  Tell them all of your symptoms.  Have you had any bleeding?  That was my wake-up call, although after diagnosis, I realize that I had other troubling symptoms that I did not think indicated cancer, but now know they were most likely related.  When I would have a BM, I never felt completely emptied out.  I suffered from chronic constipation and abdominal cramps, bloating, weight loss and fatigue.  The bleeding was what finally got me to see a doctor.  I would urge you to get thoroughly checked out and I hope anal cancer can be ruled out.  Good luck and please keep us posted.

    Martha

    Thanks for the input

    Thanks for the input Martha,

    No, no bleeding that I can see. Years ago I had considerable blood but that I believe was from piles or hemorhoids? My stool changed over the course of maybe two weeks almost 5 months ago. It went from being easy enough do to supplements with miralax and fiber etc. It went from workable to a constant struggle.If it was really loose that is fine with me. A normal bm with solid excrement is a sign to me that I'm not getting enough water or fiber. I watch it closely and have for almost 20 years. It has never been easy or something I could just not pay attention to since I had a colon resection surgery do to diverticulitus and burst colon twenty years ago. I guess my best case scenario would be "just" adhesions and get them trimmed? I had a temporary colostomy for 2 months but was able to get it reversed, that is why the battle with bm's.

    The stools changed to difficult, pink shrimp sized and of course tapered both ends. I got plugged up and it takes days or longer to get stuff moving again. I had almost lost hope I would have a bm again without assistance. Enema's, the works.

    It is anybody's guess at this point. Some knowledgable people tell me they don't think it is cancer do to the pain? IDK. I have had two doc's, one a urologist and the other a gastroenterologist both give me the manual check and didn't think my prostrate was overly enlarged, this I guess is good. 

    I am glad to hear you have never heard of SCC metastizing to the anus. I tell anyone that will listen if you get something really wrong with you, get to a famous hospital. I have tried getting help at local smaller facilities but less than the help I need. There are other great facilities than where I am going [the Mayo], it is the most convenient, I would go to some of the other great places but this will work. I need to know. If they can't figure it out, I don't know if it can be figured. 

    They did a great job on my neck resection last year, I wish I healed like we use to.  Thanks Martha

  • lp1964
    lp1964 Member Posts: 1,239 Member
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    petroglyph said:

    Thanks for the input

    Thanks for the input Martha,

    No, no bleeding that I can see. Years ago I had considerable blood but that I believe was from piles or hemorhoids? My stool changed over the course of maybe two weeks almost 5 months ago. It went from being easy enough do to supplements with miralax and fiber etc. It went from workable to a constant struggle.If it was really loose that is fine with me. A normal bm with solid excrement is a sign to me that I'm not getting enough water or fiber. I watch it closely and have for almost 20 years. It has never been easy or something I could just not pay attention to since I had a colon resection surgery do to diverticulitus and burst colon twenty years ago. I guess my best case scenario would be "just" adhesions and get them trimmed? I had a temporary colostomy for 2 months but was able to get it reversed, that is why the battle with bm's.

    The stools changed to difficult, pink shrimp sized and of course tapered both ends. I got plugged up and it takes days or longer to get stuff moving again. I had almost lost hope I would have a bm again without assistance. Enema's, the works.

    It is anybody's guess at this point. Some knowledgable people tell me they don't think it is cancer do to the pain? IDK. I have had two doc's, one a urologist and the other a gastroenterologist both give me the manual check and didn't think my prostrate was overly enlarged, this I guess is good. 

    I am glad to hear you have never heard of SCC metastizing to the anus. I tell anyone that will listen if you get something really wrong with you, get to a famous hospital. I have tried getting help at local smaller facilities but less than the help I need. There are other great facilities than where I am going [the Mayo], it is the most convenient, I would go to some of the other great places but this will work. I need to know. If they can't figure it out, I don't know if it can be figured. 

    They did a great job on my neck resection last year, I wish I healed like we use to.  Thanks Martha

    Dear Friend,

    I had rectal cancer that infiltrated the anus and I had debilitating pain for a couple of months before the radiation finally helped. I remember once I took my medication a little late and I had to stop walking because I couldn't stand the pain. 

    Follow up with this until you find definite answers.

    Laz

  • petroglyph
    petroglyph Member Posts: 41
    #5
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    lp1964 said:

    Dear Friend,

    I had rectal cancer that infiltrated the anus and I had debilitating pain for a couple of months before the radiation finally helped. I remember once I took my medication a little late and I had to stop walking because I couldn't stand the pain. 

    Follow up with this until you find definite answers.

    Laz

    Thanks Laz,
    I have been

    Thanks Laz,

    I have been diligent about getting exercise until about 5 weeks ago now. By exercise I just mean active like walking or some water therapy. Even if I didn't feel like it, I made myself do it anyway. I like the results. I'm in Arizona and the weather right now is great for strolling, birds chirping, trees pollinating. 

    I am going to the Mayo Monday. We all know how much we want an answer to our dilemma. My wife has been suffering as well with difficulty finding an answer to her ailment, after more than two years. Finally we believe her diagnosis of Eptein Barr virus. That is a tricky deal and can be associated with nasopharyngeal cancer.

    When I was a kid I occasionally would here of some kid that caught "the kissing disease" or mononucleosis. If EBV goes untreated it leads to mono. The symptoms are very similar, muscle pain and exhaustion.

    Something to look at if searching for a beginning.

    I am mentally prepared to deal with whatever the diagnosis is, I guess. It's the anxiety of the unknown that begs relief.

    What you said about follow-up hits close to home for me. I am amazed at how much of our own personal "health care" is up to us. Doesn't everyone want to just be able to trust their old family Dr, to fix things? Everything from a broken heart to the crack of dawn? I would. I just can't find that Dr. I go to a men's group of cancer survivors and they are pretty amazing old guys. We lost one last week, he was 92 and still fighting hard. Survivors are definately an inspiration.

    I appreciate your response.

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