Farah Fawcett's anal cancer

zjrosenthal
zjrosenthal Member Posts: 43
edited March 2014 in Rare and Other Cancers #1
Has anyone else with anal cancer been affected by Farah's story? I wanted to know what stage she was in when initially diagnosed and what her first treatment was. Also when it reoccured did she consider radical surgery with a colostomy? Did she have HPV and did that cause the cancer? So much unanswered questions about this rare but increasing cancer that I was treated for last fall.

Comments

  • lisavaughan
    lisavaughan Member Posts: 7
    Farrah Fawcett's Cancer Stage 2
    I've watched it several times. The documentary didn't show her initial treatment. But according to her followup I assume she had a relatively small tumor and it was treated with radiation and chemo. However, I also think because it was Farrah Fawcett they eased back a little in order to preserve and keep her intact. This could have allowed the reocurrence and the liver metastasize but that's only speculation. I'm assuming she had a stage 2 tumor.

    She elected to pass on the surgery to remove her anus/rectum because she didn't want the colostomy bag. Routine for this type of cancer once it or if it reoccurs is removal of the lower bowel or the anus/rectum. She had a reoccurance of the anal tumor and it also metastasized to her liver. I don't think at that point it would have mattered much. However, I do think she should have had the surgery in order to help slow down the cancer that spread to her liver from the anal tumor. She choose German doctors to remove the anal tumor without damaging her anus/rectum/vagina and to also attempt to address the liver cancer. This wasn't successful because it came back a third time. Very unusual for this type of cancer.

    I was told when I was diagnosed with stage 3 anal squamous cell cancer that the causes COULD be from my years of smoking (diagnosed at age 39) or from an HPV. They also ask me if I had anal intercourse. Never had anal intercourse. I've been with my husband for 20 years and neither of us have strayed outside our marriage. My husband said he had veneral warts when he was 19 years old while serving in the Marine Corps. I've also heard that HPVs usually dissolve within years due to one's immune system. Years ago it was thought HPVs lasted indefinitely. They really can't be sure what causes each case of anal cancer. I use to nair myself in that area b/c the hair irrated me down there. Perhaps the chemicals caused it. It's been three years now and I'm still cancer free. The treatment ruined me though. Radiation damaged my anus/rectum so I have a permanent colostomy now. It also damaged my vagina. Scar tissue so bad I no longer can have sex. I had intestinal surgery (removed part of my upper intestines and colon) due to radiation damage. I developed gangrene which fused a loop together so a foot of my upper intestines were removed and about 8 inches of my colon was removed. That damn near killed me. Radiation also put me in menopause and damaged my bones. I have severe osteoporosis and take flosamax with a calcium supplement. Radiation melted my cervix, etc. 42 rounds of radiation to melt a tennis ball size tumor in my anus. Chemo wiped out the rest. All of this could have been prevented if the tumor would have been found much earlier. I was told it had been growing for 5 years. Still told it was 95% curable, although my doctors had various opinions about the success rate. My colorectal surgeon told me 95% cure rate. In the same breath it went down to 90% and before he left post-op it was down to 85% curable. My oncologist told me 95% due to location and type (squamous cell). My oncologist radiologist also told me 95% and compared it to non-hodgkins disease.

    Once again....it's been three years and even with part of my intestines missing and a colostomy bag, osteoporosis and an inoperable vagina....I feel great. Colorectal surgeon took biopsies of my anus/rectum under anesthesia every two months for two years. I've been CT Scanned, MRI and Xrayed to death. Most of this came from my intestinal surgery as a result of the radiation melting my upper intestines and colon. Spent 4 months in the hospital with a nose feeding tube and lost down to 83 lbs. That was rough.

    Now at 5'2" I weigh 113 lbs. I'm not concerned about its return....but the treatment concerns me a little. Wondering what might pop up next. This type of cancer is very rare and especially rare for someone 39 years old. Folks diagnosed with Stage 1 or 2....I tell them they have about a 1% chance of recurrence. A grape size tumor in that area with a squamous cell cancer in very, very curable with hardly a chance of it ever returning. Remember....it's like prostate cancer, it grows very slowly. By some miracle it returns, the speed of its growth is much quicker.
  • dasspears
    dasspears Member Posts: 227
    I had questions too...
    From what I have read and from watching the show, her cancer was advanced and she refused a colostomy and did not want the "type of chemo" that will make your hair fall out. She had a recurrence of the tumor at the same location and it had them metastized to her liver and I thought her lymph nodes also. It was then she decided to go to Germany and while they suggested a colostomy, she once again said no. They did the brachy therapy (ouch!). While some of the liver tumors treated were no longer active, she did experience growth of new tumors. Then she sought the chemo that will make your hair fall out but I think at this point, it' basically maintenance chemo.

    Personally, when I'm fighting for my life, I don't think I would worry too much about how I look.
  • Doskymom
    Doskymom Member Posts: 4
    dasspears said:

    I had questions too...
    From what I have read and from watching the show, her cancer was advanced and she refused a colostomy and did not want the "type of chemo" that will make your hair fall out. She had a recurrence of the tumor at the same location and it had them metastized to her liver and I thought her lymph nodes also. It was then she decided to go to Germany and while they suggested a colostomy, she once again said no. They did the brachy therapy (ouch!). While some of the liver tumors treated were no longer active, she did experience growth of new tumors. Then she sought the chemo that will make your hair fall out but I think at this point, it' basically maintenance chemo.

    Personally, when I'm fighting for my life, I don't think I would worry too much about how I look.

    I also have been diagnosed
    I also have been diagnosed with anal cancer and it's very frustrating for me because no one seems to be in agreement at all with regard to this cancer. I noticed one poster here who posted that this cancer is rare and also that if caught in its early stages has a 1% chance of recurring. This is exactly the opposite of what I've been told (and experienced). I was told by more than one doctor at the Mayo Clinic that this type of cancer is fairly common. I was also told that you can almost bet on a recurrence - which has proven accurate in my case. My cancer was diagnosed early and yet I've had surgery 3 times now in the last 3 years with more to come. I'm also frustrated because there seems to be no agreement as to the best treatment for my cancer. I saw 3 doctors at the Mayo Clinic and they all recommended something different. One said definitely a colostomy, one said a combo of chemo/radiation would be best and the other said I could have a 95% chance of a cure with radiation only. My surgeon wants to do the procedure where they do a temporary colostomy, put in flaps and then reverse the colostomy once I've healed. I have no idea which option would be best for me and I'm disappointed that the doctors at the Mayo Clinic were not in agreement. I even asked them if I could see statistics on how they've treated this type of cancer in the past and what the results were and I was told they don't have those statistics. It's hard to know what to do with so many different opinions.
  • zjrosenthal
    zjrosenthal Member Posts: 43
    Doskymom said:

    I also have been diagnosed
    I also have been diagnosed with anal cancer and it's very frustrating for me because no one seems to be in agreement at all with regard to this cancer. I noticed one poster here who posted that this cancer is rare and also that if caught in its early stages has a 1% chance of recurring. This is exactly the opposite of what I've been told (and experienced). I was told by more than one doctor at the Mayo Clinic that this type of cancer is fairly common. I was also told that you can almost bet on a recurrence - which has proven accurate in my case. My cancer was diagnosed early and yet I've had surgery 3 times now in the last 3 years with more to come. I'm also frustrated because there seems to be no agreement as to the best treatment for my cancer. I saw 3 doctors at the Mayo Clinic and they all recommended something different. One said definitely a colostomy, one said a combo of chemo/radiation would be best and the other said I could have a 95% chance of a cure with radiation only. My surgeon wants to do the procedure where they do a temporary colostomy, put in flaps and then reverse the colostomy once I've healed. I have no idea which option would be best for me and I'm disappointed that the doctors at the Mayo Clinic were not in agreement. I even asked them if I could see statistics on how they've treated this type of cancer in the past and what the results were and I was told they don't have those statistics. It's hard to know what to do with so many different opinions.

    Treatment
    What stage were you in when diagnosed if I may ask? Also what did your original treatment consist of?
  • zjrosenthal
    zjrosenthal Member Posts: 43
    Doskymom said:

    I also have been diagnosed
    I also have been diagnosed with anal cancer and it's very frustrating for me because no one seems to be in agreement at all with regard to this cancer. I noticed one poster here who posted that this cancer is rare and also that if caught in its early stages has a 1% chance of recurring. This is exactly the opposite of what I've been told (and experienced). I was told by more than one doctor at the Mayo Clinic that this type of cancer is fairly common. I was also told that you can almost bet on a recurrence - which has proven accurate in my case. My cancer was diagnosed early and yet I've had surgery 3 times now in the last 3 years with more to come. I'm also frustrated because there seems to be no agreement as to the best treatment for my cancer. I saw 3 doctors at the Mayo Clinic and they all recommended something different. One said definitely a colostomy, one said a combo of chemo/radiation would be best and the other said I could have a 95% chance of a cure with radiation only. My surgeon wants to do the procedure where they do a temporary colostomy, put in flaps and then reverse the colostomy once I've healed. I have no idea which option would be best for me and I'm disappointed that the doctors at the Mayo Clinic were not in agreement. I even asked them if I could see statistics on how they've treated this type of cancer in the past and what the results were and I was told they don't have those statistics. It's hard to know what to do with so many different opinions.

    Treatment
    What stage were you in when diagnosed if I may ask? Also what did your original treatment consist of?
  • Doskymom
    Doskymom Member Posts: 4
    Treatment
    My cancer was diagnosed in its earliest stage. The only treatments I have had so far are 3 surgeries.
  • zjrosenthal
    zjrosenthal Member Posts: 43
    best treatment
    All I can share is my experience being treated at Memorial Sloan Kettering cancer hospital in NYC. Mine was stage 2-3 with possibly one lymph node involved. I was treated by 3 Doctors, a chemo oncologist, a radiation oncologist and a surgeon. After a
    PET scan and an internal exam by the surgeon including a biopsy, it was decided to treat me with no surgery, 25 IMRT treatments of radiation (IMRT is the best and newest form of radio treatment)and then 3 extra zaps directly to the tumor. I also had a mediport put in and had 2 courses of chemo during the first and 5th weeks of radio treatment. They treated my with mitomycin and 5FU of chemo and I actually was hooked up to the chemobottle by my mediport and carried it around in a waist pack for 4 days each time! These are the newest protocols for treating anal cancer at stage 2 and early stage 3. They also radiated all the surrounding lymph nodes in the folds of my legs all the way up to my hips.
    PS It worked and so far, 9 months post treatment all they can find is scar tissue.
    The treatment is not fun but who cares if it saves your life!
  • Foxes
    Foxes Member Posts: 2
    Farah was strawberry size
    Farah was initially diagnosed with a strawberry sized tumor.
    So she was higher than a stage I.
  • Doskymom
    Doskymom Member Posts: 4
    Can you tell me where you
    Can you tell me where you got the info about Farrah's initial diagnosis? Everything I've seen has taken up her story somewhere in the middle and I, too, was wondering what her initial diagnosis was and how it came about.

    My problem began with an itch. Unfortunately, I went to see my GP about it several times and she kept sending me home with different itching creams. It was over a year before she did a biopsy.