Need advice, so confused

rocky1040
rocky1040 Member Posts: 3
in Anal Cancer #1
Ok this past week has been a whirlwind of tests, pet,ct, chest x-ray all clear. Which was great news.....now the confusing part

My Diagnosis:
distal rectl polyp, left anterior quadrant, transana excision:
invasive squamous cell carcinoma, size 0.6cm, sugical resection margins ar univolved
staging pT1, pNX, pMx
This diagnosis was done at the pathology department at the hospital

I have been working with the university here because we have a great cancer center. The university has my biopsey slide and their path department is looking at it, just as a 2nd opinion. I should know today or monday what they think, but basically expect them to get the same results.

Ok I am so confused, the university is saying I don't need treatment that they believe the surgery removed the tumor and I will just need to get check e 3 months for 2 years, then 6 months etc until i meet year mark.

Has anyone else had this happen because there tumor was very small? I also had another private cancer center tell me I need treatment.

I don't know what to do and I would like to know what your tumor size was and the staging.
I know I have read people with stage 1 and also with small tumors and had treatment.

I have two very drastic opinions no treatment and yes should have treatment. I need advice and opinions. I am also seeing a new doctor next Tuesday. I heard MD Anderson knows also about this can anyone verify this because I am ready to fly where I need to go to get to the bottom of this.
Thanks so much

Comments

  • RoseC
    RoseC Member Posts: 559
    #2
    Hi Rocky
    I was diagnosed as stage 2, margins were not clear. The tumor was 2 cm. They said I needed to have treatment because the margins weren't clear (thus it would continue growing). My mom had squamous cell found in the perianal area - she had surgery to remove the area - margins were clear so she had no further treatment. That was years ago and it never returned.

    My gosh, it IS confusing when you have differing opinions. I wish I could be of more help. Have you checked the NCCN guidelines? I'll try to find them (I know the site has been posted many times, but I don't have it bookmarked) and see what they say about stage 1, no margins involved.

    Edit: Here's what I gathered from the NCCN guidelines: If the cancer was found in the anal canal, treatment is recommended. If the cancer was a 'margin lesion' with adequate margins, observation is recommended.

    I guess the question to ask your doctors is whether the cancer was found in the anal canal or if it was a margin lesion (I have no idea how to tell the difference...).

    You might want to copy the information from the NCCN guidelines and bring it with you?

    Here's the website (you have to register then choose "Guidelines", "Anal Cancer").
    http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#anal
  • MyHopen413
    MyHopen413 Member Posts: 38
    #3
    My original lesion was at
    My original lesion was at the junction of my anal canal and rectum. It was in the 4th layer (there are 5 layers) and was only .8cm, so very small. In fact it was at the base of a polyp and my GI doc almost didn't biopsy it, but thank God he did. My margins were not clear and at first they said I was Stage 1. However, I had a test called a endoscopic ultrasound at OU medical center in Oklahoma City and there were lymph nodes involved. So my staging went up to IIIA. The doctor in OKC mentioned surgery, but what I read sounded like the protoccol was chemo with radiation, so that is what I opted for.
    I will tell you that after my first round of treatment I had follow up tests and the cancer had spread to a lymph node in my abdomen. I had that surgically removed and they worked a little on what was left of the original lesion. Today I am cancer free. So the long and the short of it is - I had both surgery and chemo with radiation.
    Everyone's cancer is probably different. I will tell you that my oncologist worked at MD Anderson for several years and he consulted with them on my treatment and they concurred with his treatment plan. My slides were also sent to Mayo Clinic. I'm sorry you're having different opinions about treatment, I'm sure that makes it hard. I'd just be really up front with your doctor and ask the hard questions.
    I had 5-FU and Mytomicin the first and last week of my radiation. Radiation lasted 61/2 weeks. The second time I had Taxodere/Cisplatin and 5-FU one day a week, every other week for 8 treatments. Then I had 28 abdominal radiation treatments. It was hard, but I am recovering quickly.
    Best of luck to you.
  • sephie
    sephie Member Posts: 650 Member
    #4
    md anderson
    that is where i was treated almost 3 years ago. i was stage 2 no nodes no metastisis. i still go back every 6 months but have no evidence of disease at this time. i do have problems with where the radiation burned me so much but am still hoping that it will get better. i had chemo and radiation--- the typical protocol for my stage. they are seeing more and more anal cancers. they are learning more and more. i would go there. your pathologist will need to send them your slides . sephie
  • mp327
    mp327 Member Posts: 4,440 Member
    #5
    rocky
    The unfortunate part of the staging you have received, according to the NCCN guidelines, is that it is usually not treated because the tumor and lymph nodes can not be assessed. The guidelines do not go into detail about this, they only fail to list this staging in the treatment protocol, therefore leading me to believe that no treatment is done. Perhaps this is a "watch and wait" approach, I just don't know. I would caution you about using a private cancer center, as they are for profit and may be pushing you to have treatment that is not necessary just to line their pockets. I hate to say that, but that's how a lot of them operate. The university hospital would be my choice and if they are saying no treatment and that surgery has removed the tumor with clear margins, I would be inclined to go with that approach. Just make sure that you are closely monitored. Getting a second opinion from MDA or another facility with experience in treating anal cancer would be advisable. I wish you the best and hope you'll come back and let us know what the plan is.

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