The Foot Thing

seeknpeace
seeknpeace Member Posts: 259
edited March 2014 in Breast Cancer #1
Hokay, I told you guys about the darkening, thickening skin on the top of my left foot. Went to derm, did a biopsy, could not determine what it was. Turns out that there is a malady called acanthosis nigricans that manifests like my foot when you have a cancerous tumor elsewhere in your body, and since I had bc this year, they wanted to be sure it was not that. Was sent to the man, a dermatologist guru who said it was lichen simplex and I had it because I scratch my foot. Nevermind that I do not scratch it, (he said I do it in my sleep..huh? and I don't wake up? It only itches in my sleep?) and it is because of the shoes I wear (I do not wear anything that covers the top of my foot, and have really never worn anything like that, it is summer, my office has been in my home since 1/2000..I wear no shoes)
and his highness finally said, "well, I wrote a book. I will have my nurse copy the pages from it regarding lichen simplex and once you see it, you will lose all doubt. I also feel good about this diagnosis since the biopsy lab work was done by us." The pathology report says that it is NOT lichen simplex. I did not have a copy with me, and could not remember what it said, I just knew that lichen simplex was not a consideration. And, when I got to my car and looked at his highnesses book pages, my condition looks nothing like the pics in his book and the description is nothing like my condition, nor any of the other things surrounding it, per his book.

SOOOO...I called my dermatologist who is sending me to Duke Medical Center. I know that I may be over reacting, but, I was told by two techs, a prominent surgeon, another tech and a breast clinic doctor that I did NOT have bc. I had to insist on the biopsy. Only to discover high nuclear grade cancer with extensive necrosis. I have lost my comfortable zone with doctors, and this doctor was so flip. He had five residents with him, this was Wake Forest Medical Center, and it was like he was showing off. He never asked me one thing, just told me the above. Sorry, but, I am seething about this, and want to go over there and konk him on the noggin for treating me with so little respect. sigh.

Jan

Comments

  • mssue
    mssue Member Posts: 242
    Hi Jan,

    I don;t know what's up with your foot-I hope you find out soon. My question is -are you in North Carolina????? Wake Medical in Raleigh--Duke Medical in Durham????I live 30 minutes North of Durham--45 minutes to an hour from Raleigh.Let me know if you're that close that would be GREAT!I have an appointment at the Durham Women's Clinic on East Carver St next Tuesday at 11am,they want to do an ultra sound of my uterus and ovaries,then the next Tuesday it's time for a mammogram-I'll do that one here at the Hospital.Anyway--
    In the meantime I hope you get the help you need,my thoughts and prayers are with you.

    Sue
  • seeknpeace
    seeknpeace Member Posts: 259
    mssue said:

    Hi Jan,

    I don;t know what's up with your foot-I hope you find out soon. My question is -are you in North Carolina????? Wake Medical in Raleigh--Duke Medical in Durham????I live 30 minutes North of Durham--45 minutes to an hour from Raleigh.Let me know if you're that close that would be GREAT!I have an appointment at the Durham Women's Clinic on East Carver St next Tuesday at 11am,they want to do an ultra sound of my uterus and ovaries,then the next Tuesday it's time for a mammogram-I'll do that one here at the Hospital.Anyway--
    In the meantime I hope you get the help you need,my thoughts and prayers are with you.

    Sue

    Yes, I am in NC. I live in Winston Salem, and was seen at the Wake Forest Medical Center, part of the Bowman Gray School of Medicine. My appt with Duke Hosp Dermatology is Dec 17...I hope that it doesn't fall off before then. Ha.

    The doctor called and offered to do another biopsy, two places on my foot to see if we can definately rule out Lichen Simplex or rule it in. Not the Holy one, but, my first dermatologist. She has a lot of faith in his highness but, I just need a reason to believe him, not things that are not applicable. So, she understands all that I have been through and is willing to go the gamut with me on it. I get to Raleigh/Durham occasionally. I went to Raleigh to see Fleetwood Mac at Walnut Creek last month. When I come again, I will post and maybe we can have lunch or something. That would be great.

    Jan
  • jamjar62
    jamjar62 Member Posts: 135
    Jan,

    I'm a med tech and I looked up acantosis nigricans in my books. Important to know that its SOMETIMES a manifestation of cancer in the internal organs. Also seen in people with depressed immunity which you might be if you recently finished chemo.

    Good for you for questioning his highness. Don't you love docs with the God complex. I once had a MD tell me "I'm a doctor so I can talk to you that way" when he had been rude to me!! He was a short man so I chalked it up to that. Was his highness a short man??? LOL

    You are not overreacting at all. Many of us are alive because we insisted that a doctor dig a little deeper or go the extra mile....LISTEN TO US! In the end, you have to be your own advocate and actually its quite empowering (as you know).

    Keep us abreast of the situation as you make sure nothing is afoot (couldn't resist the puns).

    Blessings,
    Karen
  • seeknpeace
    seeknpeace Member Posts: 259
    jamjar62 said:

    Jan,

    I'm a med tech and I looked up acantosis nigricans in my books. Important to know that its SOMETIMES a manifestation of cancer in the internal organs. Also seen in people with depressed immunity which you might be if you recently finished chemo.

    Good for you for questioning his highness. Don't you love docs with the God complex. I once had a MD tell me "I'm a doctor so I can talk to you that way" when he had been rude to me!! He was a short man so I chalked it up to that. Was his highness a short man??? LOL

    You are not overreacting at all. Many of us are alive because we insisted that a doctor dig a little deeper or go the extra mile....LISTEN TO US! In the end, you have to be your own advocate and actually its quite empowering (as you know).

    Keep us abreast of the situation as you make sure nothing is afoot (couldn't resist the puns).

    Blessings,
    Karen

    Hi, yes, it is only sometimes a reaction to an internal cancer, which is typically in the gastro area. The thing is that I fell into a minority big time with my cancer. It was microcalcifications that were well rounded and spaced apart...atypically not cancer. But, it was not only cancer but, diffuse nuclear grade 3 with extensive necrosis, comedo subtype. Est/pst neg. The area was 2.5 cm so I am like whoa...I had to insist on my biospy for it. The surgeon was shocked. If His Highness had given me any valid reasons for it to be Lichen Simplex, I would have been so relieved. Everything, and I underscore everything, he told me was discounted, and in fact by his own written words, the path report, or the pics that he referenced. It is so frustrating. I hope that it is LS, and not AN. That can be a serious disease. My path report was sent looking specifically for AN or LS. What they reported was:

    "There is orthokeratosis and papillomatosis with dilated papillary dermal blood bessels, but, limited acanthosis, vertical dermal fibrosis or other features of acanthosis nigricans or lichen simplex chronicus.

    We do NOT favor lichen simplex chronicus. Human papilloma virus testing could be performed on request."

    The report does not say that they do not favor AN, and in my mind therefore, does not totally rule it out. Am I making too much of it?

    They did the hpv test and it was negative. I am so confused, don't want to make a mountain out of a mole hill, hehe, but, see, I have lost my total trust of doctors, and have learned the hard way to do more research and delve into my health. So, I am insisting on more, and to my first dermatologists credit, she is with me on that, even though she feels that it is not AN. However, I did find several other conditions that could be this thing and none of them were explored at all. I was just told that because I scratch it all the time, Oh, well, in my sleep, Oh well, because I wear shoes all the time, Oh well, never mind the above, it is LS. haha. Not good enough.

    SO, I am not seeing His Highness again. He can kiss my arse. Do you have an opinion about doing things to decrease the appearance of the condition? My derm. said for me to use these three things that will thin out the area and reduce the area, hopefully return the color to normal. (the area is growing, now it is over half of the top of my foot and advancing up the front of my leg). I asked her if it would not be best for Duke to see me with this malady at it's worst, rather than clearing up the appearance, which with AN it is difficult to change the appearance as it is due to some other reason, diabetes, cancer, obesity. I am not fat and do not have diabetes as far as I know. So, what is your opinion? I don't want to changes it's appearance so that the other doc can see it, but, it is not until December.

    I am sorry to ramble. I am just so upset with all this. Thank you SO much for looking at this in your book. I have read and read about it on the internet and I understand it, and I am terrified of it. I just thought that my foot looked ugly.

    Jan
  • inkblot
    inkblot Member Posts: 698 Member
    Hi Jan:

    First I have to tell you that I totally LOVE your attitude with this issue! We need to not only ask questions but ask "why" a doc "thinks" something, when labs or path reports do not clearly substantiate his/her "opinions". KEEP HARPING ON WHOMEVER YOU HAVE TO IN ORDER TO GET THIS THING A NAME AND GET IT PROPERLY ADDRESSED.

    I too would be reluctant to try to reduce the size or appearance of the lesion before going to Duke. Did you make the appoint. at Duke or did your doc or a nurse arrange it? I'm just thinking out loud, but I'd call Duke and look into getting in there for an evaluation sooner. Like asap, if possible. Let them know that you're very concerned and that the other docs have not been able to conclusively rule out anything, that it could be quite serious and waiting 3 months is risky under the circumstances? Can't hurt to give it a go, maybe? I'd want to get in there yesterday!

    I have relatives who live in the South and my cousin recently had an experience similar to your own...run arounds, no specific dx...just guesses and one doc who even wanted to treat him for MS, even though there was absolutely nothing supporting that dx. Family (including doctors in the family) thought he'd had some sort of stroke (TIA) based upon his symptoms, but he didn't improve and the symptoms continued while numerous neruologists continued to try to treat him for everything from migraines to MS. He had complete workups on virtually every system in his body and they still missed the dx. Go figure. After much hounding of the primay doc, he finally got a referral to Duke and when he called to set the appoint. it was just a 3 day wait to get in. Specialists there took less than half a day to render a definitive dx. He'd had meningitis and was on the mend. It wasn't a contgious type, thank goodness. He's quite fine now and only wishes he'd gone to Duke sooner. Said he had a good experience there and that the personnel and docs were very caring, asking lots of questions and making notes of everything in addition to thoroughly reviewing his previous workup reports, etc.. Said he waited like 2 minutes to see the doc there. Sounds like a good facility and worth the time.

    Keep us posted and keep up the "pushing"!

    Love, light and laughter,
    Ink