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Newly diagosed with questions??

gypsy509
Posts: 11
Joined: Jun 2010

Hi,
So glad to have found this board with real people and their stories. I have been attached to my pc for information since my diaagnosis on May 19.

I had no prior symptons and had never even heard of anal cancer before. I went for a routine colonoscopy ( my first one) on Feb 22, 2010. There wew two polyps removed one in the ascending colon and one in the rectum both benign appearing. The 4mm polyp in the rectum came back as fragments of condyloma with severe dysplasia/carcinoma in-situ with a positive for hpv-16. I had no idea what hpv-16 was so I did some research and saw that it was sexually transmitted, could be caused by genital warts, or prior uterine cancer.
I did have endometrial cancer in 2000 stage 1a with no nodal involvement and no further treatement after having it removed via hysterectomy. I have also been married for 27 years. I am 58.
My gastro doctor suggested hat I see a surgeon to have it removed as it could become cancerous. I went to see a prominent surgeon that specialises in surgery of the rectum and he examined me and scheduled for a sigmoidoscopy as an outpatient in the hospital. The surgery was to no avail as he did not see anything to remove. He had me scheduled for six weeks followup in his office for a rectal exam. When he examined me this time he did feel a rough area right inside the anal canal at the anal dentale line. He biopsied this and it came back from the path report as in situ squamous cell carcinoma. So agaim outpatient surgery was scheduled for May 19. which resulted in the mass being removed via local trans anal disc excision at the anal rectal junction. The results were squamous cell carcinoma in situ with a focal early invasive component and the staging as T1 Nx Mx. The histoloc grage was G2 with the tumor invades submucosa.
The surgeon suggesred a consultation with a radiologist because of the early invasive component he said so i went to see him. He concloded that I have early stage 1 anal cancer. He was on the fence as to how aggreesive to proceed and he said that he was going to present my case to the cancer tumor board that he meets with weekly to discuss different cancer subjects.
The general concensus was that I have radiation combined with one chemo drug 5fu and he referred me to the oncologist. At this meeting the oncologist said that he would like to administer a single 5fu (2000 units or whatever the measuements is called) drug interveinously weekly instead of the usual protocol of the 96 hour infusion in the first and last week and with no mitomycin. This being given over an 8 week period concurrently with the radation which I think is a 6-7 week program.

Sorry this is so long but I am concerned, does anyone have any experience with this? They tell me my case is very rare and so early that they dont want to overkill. Everything I have read suggest the radation combined with the two chemo drugs.

Mu other concern is that i do have another opinion appointment with The Moffit Cancer center in Tampa but cannot get an appt until July 16. I am starting chemo on Tues. June 8 and radiation thereafter next week. Will that appointment be too late?
Thanks for reading this long post.

z's picture
z
Posts: 1273
Joined: May 2009

Hi, Sorry you have to be here. The appt is too late if you want to see if surgery could be an option, as your starting your tx (treatment) this coming week. The only alternate tx I'm aware of would be surgery to remove the cancer tissue with clear margins. Now, sometimes even with surgery they would want to treat you with chemoradiation therapy to insure that there are no loose cancer cells floating around. I had a 2nd opinon with a well respected colo-rectol dr at the USF (Tpa General) teaching hospital (Dr Jorge Marcet). Dr. Marcet agreed with the nigro tx plan I was given by the oncologist. So I went with that. I was dx (diagnosed) with Anal Verge cancer Stage II NOMO. I didn't have surgery, just the nigro and I completed tx on 6-30-09 and am NED (no evidence of desease). I know its hard to make a decision, I had my 2nd opinion a week after my 1st, so I ended up putting off tx for about 2 weeks because everything had to be scheduled. It sounds like they are taking into consideration that the cancer is in situ, yet its invasive, so they are just going with 5FU and not the myto, along with the radiation zaps. I had 2 cycles 96 hour 5FU pump along with 1 infustion of myto on my 1st chemo day, along with 30 radiation zaps. Could you ask your drs, if it would be okay to wait for the 2nd opinon? I wish you the best possible decision for yourself. Keep us posted. Lori

gypsy509
Posts: 11
Joined: Jun 2010

They did remove the tumor with the surrounding tissues ...it was fragmented and they could not determine the margins but the radiologist said that it would definately be t1 no mo. I also had a pet scan which came out normal. He also did feel comfortable to wait until July 16 before starting any treatment because the mass had grown back so quickly between Feb 22 when it was discovered and May 11 when it was biopsied the second time. thanks for your response Lori.

gypsy509
Posts: 11
Joined: Jun 2010

typo on the last reply....he also did not feel comfortable.....

mp327's picture
mp327
Posts: 3119
Joined: Jan 2010

So sorry for the circumstances that have brought you here. It is unfortunate that any of us have to be here, but we are lucky to have each other. As for the treatment protocol, most people get the 2 chemo drugs (Mitomycin and 5FU) on weeks 1 and 5 during the 6 week treatment period. Mitomycin can have some very toxic effects, so this may be why your doctor has suggested using only the 5FU. I had the standard 6 week protocol with the two drugs and I must say that the radiation was far worse for me than the chemo. Since your cancer is at such an early stage, chance are very good that your treatment will be very successful. As for waiting for the second opinion, I guess if it were me, I would not want to wait. It was about 6 weeks between the time I was diagnosed and the beginning of my treatment and the waiting was not fun. However, this is your decision and you must do what you and your docs think is best. I hope you will let us know what you decide to do and I wish you the very best with your treatment.

gypsy509
Posts: 11
Joined: Jun 2010

Thanks Lori and mp327 for you r replies. I really appreciate any input that comes my way.
I had my first rad treatment today and i think they said I would get 20 with a boost at some point but unclear on that amount still... I will keep asking until I understand.
As for the chemo I decided to get the 2nd drug cisplatin along with the 5fu and I will get this as an IV once a week and had that today as well. Not sure what to expext from this point as far as nausea, hair loss ect. I just hope and pray that it works and nothing comes back. My prayers are out there for all who are afflicted with the monster that is cancer.

mp327's picture
mp327
Posts: 3119
Joined: Jan 2010

Best of luck with your chemo/rad. You have day 1 under your belt, so know a little about what to expect. I wish you all the very best. I hope you have gotten some good nausea meds from your doc and that the Cisplatin will not have some of the toxic effects that the Mito can have. Please keep us posted on how it goes. I'll keep you in my thoughts and prayers.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

Glad you are started on your treatment. Our thoughts and prayers are with you. I can remember feeling a bit dazed but glad that finally I was getting treated. Come back often as you feel like- we will be here for you.
Priscilla

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

Hope that day one went as well as possible for you. Before you know it this will all be behind you. Remember we are here, no matter the time of day or night. I hope the support you find here will bring you comfort in the coming days/weeks.
Best regards,
Joanne

gypsy509
Posts: 11
Joined: Jun 2010

Thank you all !!
It really feels good to have a support group here....people who really understand what there is to go through.
I had my second round of rad today and so far so good. No sickness yesterday either but the doc did give me some samples for now.

lisa09
Posts: 32
Joined: Jun 2010

Hi Gypsy,

I was diagnosed with stage III last May and had the standard FU treatment with Mito and 30 radiation treatments. I now have NED. We will all be very honest and tell you that the treatment is very difficult - but you are lucky to have found this forum for support. Good luck!!

Lisa

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