Anal Camcer Survivor of 7 months

zjrosenthal said:

Intimacy
Thanks for the comments. It is good to know that I am "normal" in my recovery and not just being a baby. I tend to be a bit hard on myself.

Sandra C said:

I too was diagnosed with squamous cell carcinoma of the ananl canal in January 2008, having 25 radiation treatments and a port installed for two weeks of chemo (5fu and mytocin?)The small tumor was caught very early (I noticed a consistent small groove in my stools, with no other symptoms) It was surgically removed with clean margins then I underwent rad and chemo. I was told by doing this they could assure me 99% that the cancer would not return. Got really, really sick lost all hair, about 30 lbs, and ended up in hospital with neutropenia for about 4 days. Not to mention the brutal radiation in both front and rear areas of the pelvic region which resulted in badly burned skin, infection throughout the entire time of illness, and wound management afterwards for about 3-4 months. I too had bad radiation proctitis, stil have but it is slowly diminishing, along with early menopause, terrible hot flashes, and inability to have sexual relationships because internally everything narrowed, I cannot even get an internal exam. I have been going to a physical therapist who specializes in this type of therapy, it is slowly, very slowly getting better with progressive dilation that I must do daily along with Estradiol inserted vaginally 2x's weekly. I am very thankful for early detection, but feel as if there was a lot that I did not know about as far as the effects to my body. Maybe I am an anomaly as my radiation oncologist reminded me frequently that the effects that I have had simply do not happen from the treatment that I had, even my hair falling out seemed odd to them. I complained throughout the entire treatment of terrible itching in my vaginal area, couldn't even sleep, it was terrible. Finally I had to ask for a culture in which they found an infection and further I had to ask to be referred to a wound specialist (for a large wound on my labia), a gynecologist, and ask about dilation. None of this was offered. I felt as if I was hung out to fend for myself. Also, they turned me loose following treatment completion and said only that I need to be followed by someone for five years, this was after I asked, it was not offered. Have others experinced the same?

waspcracker said:

Anal Cancer - Treatment Quandry
I was glad to read about your good experience at Sloan-Kettering. I'm in Philadelphia but may end up having a colostomy at Sloan; I'm heading there in a few weeks for a third opinion. I was also glad to read the comment about "training your colon" post-colostomy.

I'm a 59 yr. old woman, diagnosed with Stage IIIA anal canal cancer in Sept. 2008. The original tumor was the size of a large green olive and was joined to a lymph node that was golf-ball sized. There was spread to a second lymph node (small sized) outside the colon, but no spread to the groin lymph or anywhere else.

I completed treatment (30 days of radiation and 2 cycles of mytomycin & 5-FU) in Dec. 2008. I tolerated the treatment very well until the last week, when I ended up in the hospital for 11 days, neutropenic and with mucositis throughout my GI track, causing persistent watery diarrhea. Add to that the severe radiation burns. Ugh. All told I was out of work for 3 months during treatment. I have an extraordinary employer and tremendously work colleagues; they supported me in every way possible and carried my workload during those months. I am unspeakably grateful. My husband and friends have also been steadfast, full of humor and compassion.

I'm now 4 months post-treatment and feeling great, other than some minor fatigue and vaginal stenosis. I'm back full-time at my demanding but stimulating job. The original tumor is gone, along with the small lymph node outside the colon. The large lymph node is down from a golf ball to a pea-sized nodule that may or may not contain some live cancer cells (the scans showed some activity, but were not definitive.) Therein lies the problem.

I've had all the radiation possible. My medical oncologist recommends 3 more rounds of chemo to blast any possible remaining cancer in the pea-sized lymph node. I went to another medical oncologist for a second opinion since 3 more rounds sounded brutal. That oncologist said absolutely NO, the chemo could (in his words) "blow out my bone marrow." He recommended a tissue biopsy and, if live cancer cells are found, a permanent colostomy. However my surgeon refuses to do a biopsy since he thinks he'll just get fibrous tissue and won't be able to reach the suspicious area.

Now what??? I've decided to go to Sloan-Kettering for a third opinion. I'll be seeing a colorectal surgeon and a medical oncologist. Meanwhile I'm spending days gathering all my medical records to send to Sloan-Kettering. Fortunately my employer and work colleagues remain steadfast and are pulling strings to smooth my way at Sloan.

Has anyone else out there experienced this kind of uncertainty? Has anyone else been through Sloan-Kettering? How about colostomies? Apparently my "pea" is attached to my tailbone. If I have a colostomy the tailbone will also have to be removed or resected. Ow. I've never found anyone else who has had anal cancer. It's a relief to find this network.

lisavaughan said:

Stage 3 Squamous Cell Anal Cancer
Had a tennis ball size tumor in my anus. Immediately had surgery for a colostomy. Told it would be removed in three months following my treatment. Had 42 rounds of radiation and carried a mobile bag of chemo for five consecutive days for three times during the two and 1/2 months of treatment. Scar tissue so bad I was told my colostomy would be with me forever. Scar tissue damaged my vagina so bad I can never have sex again. At 39 years old this was devastating news. The radiation also destroyed my cervix. It put me in menopause and I now have severe osteoporosis. Caused gangrene in my upper intestines and my colon. Had surgery to remove part of both.

Three years later (diagnosed in May, 2006) and I'm cancer free but not without some consequences. I feel great otherwise. I could tell you things that would curl your toes. Because my tumor was so big they went after it aggressively and I paid the price with my body. My skin all over is still dry. I have another appointment of June 4th, 2009 with my oncologist....wish me luck.

Remember....squamous cell anal cancer rarely comes back. Compared to non-hodgkins disease. Very curable even in late stages unless it metastasizes. We're going to be okay.

zjrosenthal said:

Post treatment
From what I have been reading here, I am doing remarkably well. I had stage 2-3 anal cancer and was treated last fall at Mem Sloan Kettering. They were wonderful and are still following me for the next few years. The last "big exam" by the surgeon showed only scar tissue thank God and I havent got another appointment until July. I feel for you ladies that have such permanent damage. I too wonder why my GYN didn't pick this up sooner as I am very diligent about getting my yearly exams. I guess since this is a rare cancer they dont usually think of it. My dialator, lubricants, moisturizers and estrogen cream seem to be keeping me fairly good and though the treatment (radio and chemo) were brutal, I am grateful for the result. Some bowel incontinence seems to be the only lasting side effect.

zjrosenthal said:

Liquibeads
Yes they are silicone based and are considered a moisturizer rather than a lubricant. Replens is another moisturizer not silicone based. These differ from the water based lubricants as they stay longer somewhat like using hand lotion on chapped external skin.

vickie55 said:

Legs hurt all the time!!
I am new, just joined this site and as I was reading what u posted in Nov 2008 caught my eye. No one understands when I say my legs are weak and hurt so bad. I more or less have an office job but always getting up and down from my desk. Some days I have to use to desk to pull myself up. I wonder what anal cancer and the treatments has to do with our legs hurting. I go for a colonoscopy today, I had one the year before I was DX with cancer and they only found one polyp. Do you get one every 3 years ?

Sandra C said:

I too was diagnosed with squamous cell carcinoma of the ananl canal in January 2008, having 25 radiation treatments and a port installed for two weeks of chemo (5fu and mytocin?)The small tumor was caught very early (I noticed a consistent small groove in my stools, with no other symptoms) It was surgically removed with clean margins then I underwent rad and chemo. I was told by doing this they could assure me 99% that the cancer would not return. Got really, really sick lost all hair, about 30 lbs, and ended up in hospital with neutropenia for about 4 days. Not to mention the brutal radiation in both front and rear areas of the pelvic region which resulted in badly burned skin, infection throughout the entire time of illness, and wound management afterwards for about 3-4 months. I too had bad radiation proctitis, stil have but it is slowly diminishing, along with early menopause, terrible hot flashes, and inability to have sexual relationships because internally everything narrowed, I cannot even get an internal exam. I have been going to a physical therapist who specializes in this type of therapy, it is slowly, very slowly getting better with progressive dilation that I must do daily along with Estradiol inserted vaginally 2x's weekly. I am very thankful for early detection, but feel as if there was a lot that I did not know about as far as the effects to my body. Maybe I am an anomaly as my radiation oncologist reminded me frequently that the effects that I have had simply do not happen from the treatment that I had, even my hair falling out seemed odd to them. I complained throughout the entire treatment of terrible itching in my vaginal area, couldn't even sleep, it was terrible. Finally I had to ask for a culture in which they found an infection and further I had to ask to be referred to a wound specialist (for a large wound on my labia), a gynecologist, and ask about dilation. None of this was offered. I felt as if I was hung out to fend for myself. Also, they turned me loose following treatment completion and said only that I need to be followed by someone for five years, this was after I asked, it was not offered. Have others experinced the same?