Anal Cancer

waspcracker

IMRT
I'm a 59 yr. old female and am 4 months out from 30 rounds of IMRT (plus 2 cycles of chemo--mitomycin & 5-FU). I'm very, very glad I had IMRT. The treament was intense, caused burns, and vaginal & anal stenosis, but is much less damaging than the earlier form of radiation. I'm starting to use the vaginal dilators along with estrogen cream. Healing has been rapid for me.

waspcracker

Anal Cancer - Treatment Quandry
(I posted this by mistake on the Discussion Board and am re-posting it here. Sorry for the repetition--I'm new to this form of communication.) 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 tremendous 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 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. Are you out there?

coletski

lindaprocopio said:

Hi! I have a very rare aggressive type of uterine cancer (UPSC), and am currently undergoing radiation (28 rounds + 3 internal). I did some research and am VERY glad that I am having IMRT (Intensity Modulated Radiation Therapy) instead of the more common CRT (Conventional Radiotherapy). Although this research deals with the external pelvic radiation and accompanying protocols for my particular cancer, I hope that these results will be comforting to you, as it sounds as if anal cancer radiation is in the same region and has the same types of complications that we deal with in uterine cancer. IMRT reduces the 'friendly fire' complications to surrounding tissue and organs DRAMATICALLY! If your insurance will cover the greater cost of IMRT, that's the radiation you should fight to get.

Here's the gist of the research I did & a URL if you want to read the whole thing:

Results: The initial 24 patients were treated with CRT and the subsequent 27 patients were treated with IMRT. Two patients in each group were treated to extended paraaortic lymph node fields per protocol for lymph node involvement. All patients in the IMRT group and 20/23 pts in 3DCRT group received intracavitary HDR brachytherapy. All patients completed their prescribed course of RT. No patients in either group experienced any grade 4 toxicity. Patients treated with IMRT experienced significantly less grade 2 or greater gastrointestinal toxicity (30.4% vs. 3.7%, p = 0.007), as well as less genitourinary toxicity (8.3% vs. 0%, p = 0.13) than did those treated with CRT. No differences in hematologic or skin toxicity between treatment groups were observed.

Conclusions: Radiation in combination with sandwich CT chemotherapy for UPSC had less toxicity when delivered via IMRT compared to CRT. This difference was statistically significant for GI toxicity, and approached statistical significance for GU toxicity.
The reduction in GI toxicity is of particular importance, as GI complications are a common dose limiting toxicity in UPSC patients. Further follow-up and prospective study with dose escalation is warranted.

Author Disclosure: J. Vainshtein, None; S. Mutyala, None; N. Thawani, None; R. Hannan, None; R. Yaparpalvi, None; S. Kalnicki,
None.

( http://download.journals.elsevierhealth.com/pdfs/journals/0360-3016/PIIS0360301608017008.pdf )

IMRT
Thank you so much, your answer to me really is helping. There's not many people with this experience with IMRT so it's good to hear that you felt it made a difference. All the bet to you, Colette

coletski

waspcracker said:

IMRT
I'm a 59 yr. old female and am 4 months out from 30 rounds of IMRT (plus 2 cycles of chemo--mitomycin & 5-FU). I'm very, very glad I had IMRT. The treament was intense, caused burns, and vaginal & anal stenosis, but is much less damaging than the earlier form of radiation. I'm starting to use the vaginal dilators along with estrogen cream. Healing has been rapid for me.

IMRT
I am so happy to hear that, everyone on this site is so amazing, I hope I can be that brave. Having the 3D conforming I think is what you are refering to as conventional? I think I will go for the IMRT though it is a hardship to go far away. I just want the least damage and best team of doc's. Thanks again

MANCE_LEGSTEEL

waspcracker said:

Anal Cancer - Treatment Quandry
(I posted this by mistake on the Discussion Board and am re-posting it here. Sorry for the repetition--I'm new to this form of communication.) 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 tremendous 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 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. Are you out there?

SQUAMOUS CARCINOMA CELL LESSION ANAL CANAL
I'LL BE STARTING CHEMORADIATION MONDAY 5/18/09. APPRECIATE ALL THE INFO. 5-fluorouracil, mitomycin, and concurrent external beam radiotherapy for treatment 30 days radiation with concurrent chemo first 4 and last four days. I am very athletic and obviously depressed about the whole PICC line thing. I guess that should be the least of my worries, hey? I have been working out fairly regularly even through diagnosis stage. Prior to that over 100 miles weekly on road bicycle. I will more or less create a journal here for anyone interested in the male side of this cancer and it's treatment.

skinor

MANCE_LEGSTEEL said:

SQUAMOUS CARCINOMA CELL LESSION ANAL CANAL
I'LL BE STARTING CHEMORADIATION MONDAY 5/18/09. APPRECIATE ALL THE INFO. 5-fluorouracil, mitomycin, and concurrent external beam radiotherapy for treatment 30 days radiation with concurrent chemo first 4 and last four days. I am very athletic and obviously depressed about the whole PICC line thing. I guess that should be the least of my worries, hey? I have been working out fairly regularly even through diagnosis stage. Prior to that over 100 miles weekly on road bicycle. I will more or less create a journal here for anyone interested in the male side of this cancer and it's treatment.

my experience with treatment for anal cancer
I was diagnosed with anal cancer Feb 2008. I had the same treatment as you will be receiving. The PICC line is very important. With the treatments you may become dehydrated and your veins are not that great therefore the PICC line will help. The first two weeks are ok but get rest. Other tips that may help is to get Aquaphor and use alot on the burn areas. When the burns get real bad, get a prescription for silvadine cream. Drink alot. Stock the house with electrolyte drinks. I had alot of nausea, vomiting and diarrhea but the drugs helped. The nausea continued for about 5 months after completing treatment. I lost about 25 lbs. Avoid depressing shows on TV or reading anything depressing. Watch only funny shows to keep your spirits up. Because you become weak, you may lose muscle from inactivity. The treatment is hard but before you know it, it is over and for the most part, you will be back to your old self. I will check this site for your process.

waspcracker

MANCE_LEGSTEEL said:

SQUAMOUS CARCINOMA CELL LESSION ANAL CANAL
I'LL BE STARTING CHEMORADIATION MONDAY 5/18/09. APPRECIATE ALL THE INFO. 5-fluorouracil, mitomycin, and concurrent external beam radiotherapy for treatment 30 days radiation with concurrent chemo first 4 and last four days. I am very athletic and obviously depressed about the whole PICC line thing. I guess that should be the least of my worries, hey? I have been working out fairly regularly even through diagnosis stage. Prior to that over 100 miles weekly on road bicycle. I will more or less create a journal here for anyone interested in the male side of this cancer and it's treatment.

A Different Kind of Road race
Sorry to hear you'll be going through this. I had a port installed (rather than a PICC) just under my right collarbone and have been very happy with it. I wince every time I see nurses fishing for veins in the poor souls without ports. The only upkeep is getting the port flushed out every 4-6 weeks so clots don't develop. I can do my usual yoga practice with no problems. Lying on my stomach doesn't work too well, and the port bugs me when my car shoulder/seat-belt has to go over it, but that's about it. Re/ the treatment, I too am very active and--previous to the anal CA Stage IIIA diagnosis--have never really been sick. Don't push yourself. Expect the chemo & radiation to sap your energy, and give into it. Just coast through; take pain & nausea meds regularly before the pain & queasiness build up. Sleep a lot. Keep us updated. This is a different kind of road race.

balletbertha

MANCE_LEGSTEEL said:

SQUAMOUS CARCINOMA CELL LESSION ANAL CANAL
I'LL BE STARTING CHEMORADIATION MONDAY 5/18/09. APPRECIATE ALL THE INFO. 5-fluorouracil, mitomycin, and concurrent external beam radiotherapy for treatment 30 days radiation with concurrent chemo first 4 and last four days. I am very athletic and obviously depressed about the whole PICC line thing. I guess that should be the least of my worries, hey? I have been working out fairly regularly even through diagnosis stage. Prior to that over 100 miles weekly on road bicycle. I will more or less create a journal here for anyone interested in the male side of this cancer and it's treatment.

How are ya doin'?
I had the same treatment and finished 3/27/09. I flew throught the first 3 0r 4 weeks, then got realy tired and my skin kept getting redder. I found I was able to control diarrhea with a BRATTY diet. Talk to the dietician where you go, mine was a major help.
I ended up buying lots of loose cotton pants (I went to the thrift store). I still don't use toilet paper (I use a squirt bottle with water and then blot with a washrag).
I was lucky enough to have family come stay with me, and for the week after the treatment was over, I lay on the sofa. That's when the red skin started to peel and I needed the pain pills and had no appetite You need to plan for this week. I ended up losing about 20 pounds, most of it in weeks 4 to 6.
The good news is that I feel great now. Defecation is still a little painful (feels like I ate too many peppers). I have a PET scan in the near future to let me know if all the cancer is gone. My advice: Drink 80 ounces of water/day while on radiation treatments, start using aquaphor or whatever cream they gave you NOW. Get lots of rest, be lazy (it actually helps with the pain). Remember this treatment is short; I have a friend whose been getting chemo for 2 years.
God bless, good luck, we're all with you

shoji

anal cancer treatment
Hi,
I have advanced anal cancer. I have had chemo & radiation. There is residual cancer according to doctors. I can also still feel the lump. I have not had biopsy yet but when I do have it & if it is still cancer (which according to doctors is most likely) I have to make up my mind quickly about surgery. I would like people's opinions on whether resection is the best way to go when cancer is advanced. There is not evidence of spread but I was not given any mri or pet scans. My doctors are very reluctant to do them. I wonder if they know something I don't. I am going to have pet & radiation scans done through another center. I hope it will give me more info. The residual cancer seems to be growing. I also have a fistula which also complicates it. My pain is under control but it never went away all through treatment. They want me to have resection whether it has spread or not. They say there is no evidence of spread to lymph glands. Ct scans are not showing any. I have had a lot of problems recovering from surgery in the past. The doctors are all for surgery. I am worried if it has spread the surgery might debilitate me so much that my quality of life might be terrible. Are there many survivors of over 5 years of people with advanced anal cancer and I wonder what the chances that it has already spread.
I hope I have covered most of it. It is difficult doing normal things let alone having these types of decisions to make. Also, I know this is difficult but what usually kills -the actual anal cancer which my doctor said when it spreads goes to the bladder & is a terrible way to die or through spread to liver & lymph. Would having the surgery stop a really painful cancer or would a resection be done later if need be.
Thank you for any help.

zjrosenthal

shoji said:

anal cancer treatment
Hi,
I have advanced anal cancer. I have had chemo & radiation. There is residual cancer according to doctors. I can also still feel the lump. I have not had biopsy yet but when I do have it & if it is still cancer (which according to doctors is most likely) I have to make up my mind quickly about surgery. I would like people's opinions on whether resection is the best way to go when cancer is advanced. There is not evidence of spread but I was not given any mri or pet scans. My doctors are very reluctant to do them. I wonder if they know something I don't. I am going to have pet & radiation scans done through another center. I hope it will give me more info. The residual cancer seems to be growing. I also have a fistula which also complicates it. My pain is under control but it never went away all through treatment. They want me to have resection whether it has spread or not. They say there is no evidence of spread to lymph glands. Ct scans are not showing any. I have had a lot of problems recovering from surgery in the past. The doctors are all for surgery. I am worried if it has spread the surgery might debilitate me so much that my quality of life might be terrible. Are there many survivors of over 5 years of people with advanced anal cancer and I wonder what the chances that it has already spread.
I hope I have covered most of it. It is difficult doing normal things let alone having these types of decisions to make. Also, I know this is difficult but what usually kills -the actual anal cancer which my doctor said when it spreads goes to the bladder & is a terrible way to die or through spread to liver & lymph. Would having the surgery stop a really painful cancer or would a resection be done later if need be.
Thank you for any help.

surgery or not
I was treated seemingly successfully with chemo and radiation last fall. However after hearing Farrah Fawcett's story I would not hesitate to have surgery if my cancer returned. A permanent colostomy would be worth it to save my life.

lisavaughan

dasspears said:

radiation
The radiation caused narrowing in the vaginal area and rectal area also. Did your doctor talk with you about graduated size dilators? They do help. I finished treatment 2/08 and still have some bowel issues depending upon what I eat.

Squamous Cell Anal Cancer (Farrah's Disease)
They don't work if scar tissue is too severe. I had 42 rounds of radiation to melt a tennis ball size tumor in my anus plus 3 rounds of chemo (carried a bag w/pump for five consecutive days each time). Radiation destroyed my anus/rectum and vagina beyond repair. I now have a permanent colostomy. At stage 3....the treatments will ultimately leave you damaged. The radiation also caused my colon and upper intestines to fuse together causing a blockage which resulted in gangrene. Surgery to remove part of both. Almost killed me. Wish my gyno would have caught it years earlier. Surgeon estimated it had been growing for about 5 years. Treatment put me in post menopause and I'm now being treated for severe osteoporosis. Destroyed my teeth also.

Cancer free after 3 years but still feeling the effects of my treatment. Otherwise I feel great. BTW....I was diagnosed at age 39. Never had anal sex but my husband did have anal warts when he was 19 while serving in the Marine Corps. He had surgery and was told he'd have the disease forever. Later he discovered the immune system usually wipes it out in about 5 years. He was married to his first wife for 10 years. They married at 19 and divorced 10 years later. She's now 49 and never been sick a day in her life. Go figure!

lisavaughan

pjjenkins said:

anal/rectal cancer
Sounds like me last year.
I, too, kept being told the blood was just an internal hemorroid but because of discomfort I insisted on colonoscopy being done early ( I was 64 and 3 years left before next "routine" colonscopy due. Sure enough, they found a tumor crossing the dentate line between anus and rectum. Called it rectal and changed it to anal.

I had two rounds of mitomycin and 31 radiation treatments and healed pretty well - back to most normal activities 3-4 months after end of radiation. The meds to control pain and nausea, etc. worked quite well. I had only of few bad days and my family and friends were unbelievably supportive. In retrospect, what I remember most is not the discomforts but the every afternoon movies with my husband (in our bedroom with a projection screen on the wall). I feel very very very lucky.

That said, I am not the old me. My vaginal walls have evidently fused and I am seeking any info I can about this problem. My ob-gyn is inclined to do nothing. I have fairly regular rounds of diarrhea. At first I actually had some incontinence issues but this has subsided. I am very anxious whenever my digestive system is upset and have not found any where enough info on the after effects of pelvic radiation.

Looking for this after effect information is what has made me finally get on this site!

How far into treatment are you now?

Stage 3 Squamous Cell Anal Cancer
The 42 rounds of radiation destoyed my cervix, scar tissue so bad I'll never have sex again. I have a permanent colostomy. The radiation also fused my upper intestines to part of my colon. This blockage turned into gangrene which followed with emergency intestinal surgery to remove a foot of my upper intestines and about 8 inches of my colon. Radiation, at 39 years old, put me into menopause and I'm now being treated with severe osteoporosis. Scar tissue is really, really bad in my anus and rectum. The colostomy can never be reversed.

Guess I'm lucky otherwise. I had a tennis ball size tumor and after three years I'm still cancer free, but not without its consequences.

Please Note: It took two years after completion of my radiation treatment before the damage to my intestines was discovered. During and after my treatment of chemo and radiation, my colorectal surgeon was taking biopsies every two months under anesthesia for two years. The intestinal blockage was either overlooked during that time or it happened instantaneous one day. I only know I was in the hospital for 10 days being treated for an intestinal infection. Within 24 hrs. of my release I was back for emergency surgery and a 4 month hospital stay. Please Note: Stage 3 cancer requires harsher treatment compared to stage 1 or 2. The cure rate doesn't fall that much though. I was told I had a 95% chance of survival although it varied among my doctors. Some said 95%, others would tell me between 85 and 90%. After three years....I've only had the initial treatment of chemo and radiation for the cancer/tumor.

phillyAC

Anal Cancer Survivor
Yup, It's been almost 17 years since I went through the same protocol for treatment as most of you - UGH! Radiation, 5FU and Mitomycin (spelling is probably wrong, but you all probably know what it is by now). I was 42 at the time of diagnosis - never thought I'd still be involved with so many effects after so many years had gone by, but radiation is rotten from start to finish! Menopause, vaginal atrophy (sex? what's that?) Radiation really does a number on your body and for many years after treatment stops. My docs didn't talk about any of the side affects especially long-term possibilities. Now I'm finding out about fecal incontinence and doctor's don't know what to do about it.

Don't misunderstand, I'm very grateful that I've had these past years with my children, husband and family, but with the good comes the bad and now my quality of life has become that of a recluse. I had a rectosele 2 months ago, now I'm on 2 "new" meds, fiber drink and no dairy products (what I'd do for an ice cream cone or a Starbucks Mocha Venti with lots of whipped cream) ..... I haven't seen any improvement after two weeks - what's next?

Hang in there folks - there's always something new to learn

zjrosenthal

Hi again
What is a rectosole if you dont mind my asking? So far the radiation effects have not been too bad...dialator 2x a week, liquibeads the same, vagifem and estrace 2x a week and ky for intimacy.....such fun!!! Well I too am grateful that I seem to have beaten the cancer.
(treated last fall)

Wa

dasspears said:

radiation
The radiation caused narrowing in the vaginal area and rectal area also. Did your doctor talk with you about graduated size dilators? They do help. I finished treatment 2/08 and still have some bowel issues depending upon what I eat.

Diet?
Hi there - I am a stage 4 rectal cancer survivor and was diagonsed 2 years ago (April, 2007), when I was 36 yrs old. I worked out regularly, ate well and have never been overweight. My diet did NOT consist of red meat, or fatty foods and my main vice was an occassional glass of wine. Also, this was not genetic (as we also did genetic testing). Regardless, I was shocked when I was diagnosed; I went through 5 weeks of 5FU, Oxciliplatin, etc, concurrent with 5 weeks of radiation. I then had surgery (Aug, 2007) and rcvd a temp ileostomy; I continued w/ another 12 weeks of 5FU and then had a reversal on the ileostomy (Feb, 2008).

In June of 2008, I went in for a routine Pet/CatScan and rcvd some of the worst news of my life, the cancer at mets and they had found 2 tumors in my liver. I underwent 4 rounds of chemo (CPT11, Avastin & 5FU). I then had surgery at UCLA Pleger Liver Institute, by one of the best surgeons and continued with another 8 rounds of chemo. I am now Cancer Free. My main concern has been my diet, I am still trying to find my footing with the right foods. I went to a "cancer" nutritionalist, but she was straight out of college and basically xeroxed a nutritional worksheet and called it a day. I am hoping someone out there who has had a similar experience can assist me in finding the right foundation for my diet.

I take a multi-vit and probiotics. About 9 inches of my colon and 1/2 of my rectum have been removed, so there is little to no storage capacity for BM's. Please, if there is anyone out there, please advise re: your diet plan. Thank you in advance and good luck with your own cancer challenges. Cancer CAN be cured, through a great medical team, good family and friends and most of all by "Pray and Faith".

ACW189

zjrosenthal said:

Hi again
What is a rectosole if you dont mind my asking? So far the radiation effects have not been too bad...dialator 2x a week, liquibeads the same, vagifem and estrace 2x a week and ky for intimacy.....such fun!!! Well I too am grateful that I seem to have beaten the cancer.
(treated last fall)

A rectocele is where the vaginal wall protrudes into the rectum and the lining between them becomes very thin. I too have a rectocele but have been told it's very common and no measures to correct it have been suggested -- even when I asked. There was some concern about the radiation effects on the rectocele--possible hole in the wall, but no issues occurred. All is good...just saw the surgeon and he said my case was "uneventful".

Spunky07

About to Begin Treatment
Hi, was diagnosed with anal cancer T2N0M0 on June 9th & am scheduled to begin a 6 week regiment of chemo & radiation on Aug 10th. Besides what I have already read here, are there any tips any of you can give me for preparing for this treatment. And I also want to say thank you to all on here - you have shared what the doctors won't say - all I keep hearing or reading is "everyone is different..." I'm aware of that, but it is frustrating when no one wants to tell you the real truth of what "might" be one of the consequences I'm facing. I'd rather be prepared for the "what ifs" than totally blind-sided. Also if there is something I can do now to help me get through this period, I'd love to hear it. Thanks.

duckyann

Spunky07 said:

About to Begin Treatment
Hi, was diagnosed with anal cancer T2N0M0 on June 9th & am scheduled to begin a 6 week regiment of chemo & radiation on Aug 10th. Besides what I have already read here, are there any tips any of you can give me for preparing for this treatment. And I also want to say thank you to all on here - you have shared what the doctors won't say - all I keep hearing or reading is "everyone is different..." I'm aware of that, but it is frustrating when no one wants to tell you the real truth of what "might" be one of the consequences I'm facing. I'd rather be prepared for the "what ifs" than totally blind-sided. Also if there is something I can do now to help me get through this period, I'd love to hear it. Thanks.

Hi Spunky07
I just finished treatments on June 10, 2009. I had 33 radiation treatments with mitomycin/5FU the 1st & 5th week. I will tell you what happened to me I got mouth sores, nausea, diarrhea and extremely tired from the chemo and radiation. There are a couple of things you could ask your doctor for if this happens; Magic Swizzle (numbing mouthwash), make sure you swish and gargle with salt water (3-4 times a day) this will help, have imodium on hand, make sure you ask for pain pills (don't wait until your pain is too bad) and you might have to watch what you eat. Lots of carbs and not so much veggies and fresh fruit. My second round of chemo I did not get the mouth sores, my doc. gave me a prescription for duflicon (I think that is the name) and it prevented it, I did however get very sick during this time and lost 7 lbs in 4 days. Make sure that you drink plenty of water and gatorade if you are not eating properly. I ended up having to take a week off of radiation because my diarrhea got so out of hand. Also, you will want to make sure that they give you some kind of silver sulfadine for the burns on your butt. You can not use this with in a couple of hours of radiation. May I ask why they are waiting so long to start your treatments? I was diagnosed on March 16, 2009 and started on April 20th and I thought that was a long time. Did you get a PET scan done? I would be more than happy to answer any questions you might have. You do have to keep in mind that people do handle the treatments differently. Hope all goes well for you.

duckyann

Spunky07

duckyann said:

Hi Spunky07
I just finished treatments on June 10, 2009. I had 33 radiation treatments with mitomycin/5FU the 1st & 5th week. I will tell you what happened to me I got mouth sores, nausea, diarrhea and extremely tired from the chemo and radiation. There are a couple of things you could ask your doctor for if this happens; Magic Swizzle (numbing mouthwash), make sure you swish and gargle with salt water (3-4 times a day) this will help, have imodium on hand, make sure you ask for pain pills (don't wait until your pain is too bad) and you might have to watch what you eat. Lots of carbs and not so much veggies and fresh fruit. My second round of chemo I did not get the mouth sores, my doc. gave me a prescription for duflicon (I think that is the name) and it prevented it, I did however get very sick during this time and lost 7 lbs in 4 days. Make sure that you drink plenty of water and gatorade if you are not eating properly. I ended up having to take a week off of radiation because my diarrhea got so out of hand. Also, you will want to make sure that they give you some kind of silver sulfadine for the burns on your butt. You can not use this with in a couple of hours of radiation. May I ask why they are waiting so long to start your treatments? I was diagnosed on March 16, 2009 and started on April 20th and I thought that was a long time. Did you get a PET scan done? I would be more than happy to answer any questions you might have. You do have to keep in mind that people do handle the treatments differently. Hope all goes well for you.

duckyann

Thanks Duckyann
I was concerned at how long it was taking them to get going - once I knew it was cancer I just wanted to get at it and get it out! (I'm not a very patient person - but I'm learning to be) Diagnosis was from a biopsy. So far I've met my radiation oncologist, had the CT simm with tattoos, a CT scan, MRI & a couple of other consults. I'm scheduled for a PET scan, vaginal ultrasound, to meet my medical oncologist (when I'll find out what kind of chemo), to get a PICC line put in and then 6 weeks of treatments with chemo in 1st and 6th week. The radiation is using helical tomotherapy (is this what some referred to as IMRT?) which is supposed to lessen the side effects and I've signed on to a clinical trial. I was told it takes this long to get everything scheduled & planned and I was not to worry - that this was normal. In hind sight (pun intended) would applying some of that silver sulfadine or aquaphor for a few days prior to beginning radiation treatments - kinda like the idea of a sunscreen prevention - help prevent the burns? Hmmmm... Thanks for the reply and best wishes.

duckyann

Spunky07 said:

Thanks Duckyann
I was concerned at how long it was taking them to get going - once I knew it was cancer I just wanted to get at it and get it out! (I'm not a very patient person - but I'm learning to be) Diagnosis was from a biopsy. So far I've met my radiation oncologist, had the CT simm with tattoos, a CT scan, MRI & a couple of other consults. I'm scheduled for a PET scan, vaginal ultrasound, to meet my medical oncologist (when I'll find out what kind of chemo), to get a PICC line put in and then 6 weeks of treatments with chemo in 1st and 6th week. The radiation is using helical tomotherapy (is this what some referred to as IMRT?) which is supposed to lessen the side effects and I've signed on to a clinical trial. I was told it takes this long to get everything scheduled & planned and I was not to worry - that this was normal. In hind sight (pun intended) would applying some of that silver sulfadine or aquaphor for a few days prior to beginning radiation treatments - kinda like the idea of a sunscreen prevention - help prevent the burns? Hmmmm... Thanks for the reply and best wishes.

Your Welcome
I am sure that the radation you will have is IMRT. That is what I had. May I ask where you are getting you treatments? What state you are in? I am in Pennsylvania. I did not have an MRI or a vaginal ultrasound but I did have the CAT and PET Scan. I did not have a pic line I have a Port a Cath. I would not use the silver sulfadine before radation. I used a lotion called Special Care Cream for about a month before I had radation. Not sure if you doctors would have it or not but it is a lotion with a bunch of vitamins in it. Maybe if they have something like that you should use it. You probably won't know what Stage you are in until after you get your PET scan results. Well if there are any other questions I can answer for you I will be happy to. Please keep in contact with me as you go along with treatment and let me know how you are doing.

Best wishes to you also.