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Posts: 32
Joined: Apr 2010

note: I had made a previous post...reading, Please help me, anal cancer survivor ct results


Can someone other than the 1 poster who responded to my post, also answer my post, with
similiar experience or any ideas, opinions. I am so very scared. Those women of you who didnt have a hysterectomy ever and had anal cancer, with pelvic radiation, can you please tell me, how in the world is your gyno, getting up there to give you a pap or, uterine biopsy?? if youve ever needed one, after the OUTSIDE PELVIC RADIATION??????????? Or, please, after the anal cancer....after your pelvic organs were radiated, did you have any findings in the pelvic organs, a mass ?????????? I am a 6yr anal cancer survivor, and I had the outside pelvic radiation, now 6 yrs later, on a CT scan abdomen and pelvic they saw a MASS but couldnt make it out, it is......6.9 x 6 1/2 round.......between either the rectum and uterus or uterus and ovary.....they want me to follow up with a sonogram ( ultrasound ). The problem is: THEY CANNOT GET THE BIOPSY OF MY UTERUS, OR A PAP SMEAR....they tried 2 yrs ago in operating room and couldnt get it....due to scar tissue....HOW ARE YOUR GYNOCOLOGISTS OR GYNO ONCOLOGIST, GETTING UP THERE? PLEASE SOMEONE HELP ME....IVE BEEN HAVING GROIN HIP PAIN FOR 3 WEEKS.....I DONT KNOW WHAT TO DO....HOW DO THEY GET UP THERE? SOMEONE HELP ME PLEASE.


Posts: 88
Joined: Apr 2011

Hi, Nina... I had a large mass in the area between the rectum and the vagina. Mine was radiated and then the chemo, but it also spread, due to not being totally detected right away. I went through another 6 months of chemo. My radiologist oncologist thought she detected a tumor in my uterus, also, and sent me to a gynocological oncologist for further check-up. Turned out it was nothing, just a lot of swelling. I didn't have any surgery, my tumor was shrunk considerable by the radiation ,and then completely by the second set of chemo. Up until this past Thursday, my scans have come back with some kind of activity in the anal region, but nothing cancerous, turns out it was just muscle adjustment or whatever from the past treatments. I don't know all that you are going thru, but I think right off the bat you need a second opinion. And get answers to your questions. I go into all my appts with a pad of paper with my questions written on it and I don't leave until the doc answers me and I have the answers written down. Also, my husband comes with me to take the notes, because I am too nervous to write. My oncologist gave me the dilator because he could only get the smallest of speculums (or whatever those things are) up in me. Also, he could only get in the size of his middle finger, I got that tight from the radiation. I don't have any more medical knowledge, or experience to give you. I am lucky in that no other organs were involved, other than the lymph nodes and something in the abdomen, but like I said, all that was too small to be detected the first time, but showed up 3 months later, and all those tumors or nodules were destroyed. I find it hard to believe that they can't do anything for you.. Please get another opinion. Ad at least get to the emergency room to get some kind of pain meds. Don't go through this alone or in pain needlessly. Also, where are you in NY, I am in upstate NY and go the the NYoncology hematology. They are very caring, knowledgeable, and compassionate. AND, They LISTEN TO YOU. Good luck, my prayers are with you. God bless... Keep us posted, and I know this sounds trite, but, try not to panic, it wil only make it harder for you to recover. I hope I helped. God bless.

Posts: 32
Joined: Apr 2010

Could you tell me where in NY they are? I am in Upper Westchester county, that is 1 hour north of NYC, about 30 minutes north of white plains ny.

Read my latest post, in response to SUES post to me. That is my latest update.

I would appreciate hearing from you.

I am sorry I don't know your real name to properly address you.

I hope to God you are doing well.


Posts: 88
Joined: Apr 2011

Sorry for not seeing this post until today... I don't do these blog things very well... I go to NYOH (New York Oncology Hematology). As far as I know, NYOH is in only the Capital District... Albany, Schenectady, Saratoga, & Rensselaer counties. But I could be wrong... I go to the Albany office and also the NYOH clinic at Albany Medical Center Hospital... I did not have the problems that you are having... So, I can't address any of your issues other than the anal stuff. Please don't give up... I had a difficult time with my second round of chemo (after finding that the cancer spread)... I may have mentioned that my first onc had a horrible bedside manner, so I got a second opinion and a different onc -- who has a great bedside manner. My news was not good, but he delivered it in such a way that I had a good deal of hope. I took his advice, listened to his treatment plan, and kept a good attitude.. Trusting in the doc is very important. I hope you go to your appts with a family member or friend. My husband goes with me. I write down all my questions and concerns on a large pad of paper, leaving lots of space between the questions for the answers. My doc is great for answering everything I want to know.. and he gives me time to write the answers. Where do you go? Is it Sloan Kettering? I've heard that Sloan is a great place. I hope I have given you some answers that will ease your mind and anxiety. Keep us all posted. We are all praying for you. Try to find things to laugh about and laugh a lot. It really does help. God bless

Posts: 1
Joined: Jun 2011

Nina, I'm so sorry to hear of your situation. I too am a 11 yr survivor of anal cancer. The vaginal problem has been an issue with me also, even since the pelvic radiation and the burns. It tighten the whole area. However my gyne has been able to use a pediatric speculum to obtain a very quick pap smear. A month ago they were able to do an intravaginal ultrasound, to find uterine masses. We decided not to do any further testing because a hysterectomy was a necessity, and just did the CT. I went through a abdominal hysterectomy due to the risk of robotics with my adhesions and scar tissue from my radiation. They looked around, removed the uterus, tubes and ovaries and then did a biopsy on the uterus. That is when they diagnosed me again with cancer, MMMT, very rare and aggressive. This too was a probable cause from the original radiation. Treatment has not yet been determined. Have to heal from the surgery, then see oncology.
Hope this gives you some insight.
Sue from IL

Posts: 32
Joined: Apr 2010

Sue, thanks for your response. I am a 6 year survivor of anal cancer and 9 yr of breast cancer, neither related. As far as I am concerned, these doctors who did the pelvic radiation without any cancer being there, and did it as a precausion, call me crazy, but they should be sued. Because, they never told me, the aftereffects it could cause, they never said, lets put a dilator up there, to prevent some of the problems. I think it was very selfish and inconsiderate of them. My tumor was between stages 1 and 2, he told me, if it was a 1, i wouldnt have needed rads in front, but since it was between, he took the grader stage and radiated. I dont think that was his call, had i known, the pelvic scarring was going to happen, I would have fought him on it. Sue? you mean ROBOTIC surgery was not an option for your hysterectomy? I was hoping that was my only option left, I am an OBESE women, big abdomen, and I read that ROBOTIC surgery is an option for women who are obese to do a hysterectomy or biopsy, I read they will not do vaginal hysterectomy for women who are obese or who had pelvic rads. Now you stated that because the adhesions and scar tissue, they had to do abdominal hysterectomy? OMG, no robotic? this means if i have scar tissue and all this FAT, they might not do the robotic or abdominal.

To Sue and the rest of the responders to my post: Latest update is, I did OPEN MRI, THE PELVIC TRANSVAGINAL, CT ABDOMINAL AND PELVIC, PET/CT SCAN. The PET SCAN showed minimal activity down in pelvic, it did NOT take the glucose, which is good, I spoke to the head of the dept, he knows about the machines and he said, he cant give diagnosis and nothing is guaranteed, but 85% accurate and sure, the uptake in the pelvic was very low and did NOT light up. ( good thing ) All other tests, still show the MASS but nobody seems to know what it is. My primary sent the results to a GYNO ONCOLOGIST and he didnt have the colonoscopy report or MRI yet, he thought it wasnt a pelvic problem, but a rectum one, but when he saw the colonoscopy, he changed his thoughts. I have an appointment to see him on July 19, I begged for a sooner appt, he is booked, they squeezing me in. Meantime, I am seeing a reg,
gyno, this coming Tuesday, to see if by some miracle, he can at least culture, my vaginal and other parts, and if he could by some miracle, get a PAP. ( doubt it ). but worth a try.

I am still in pain when going to bathroom from behind, and hip, groin, sciatic pain, very bad, I dont know if its the mass doing it, or vice versa sciatic hips ect causing it. I am scared, that NO GYNO, OR GYNO ONCOLOGIST WILL GET UP THERE, ( SOME TRIED IN 2008 ) I am afraid, now after hearing you SUE couldnt do the ROBOTIC hysterectomy due to the scar tissue, then, that might not be an option now for me also. They wont do the reg vaginal, hysterectomy or biopsy, how the heck, are they going to get in there to even see what this is?????

Posts: 108
Joined: Aug 2010

I'm am just over a year post tx, and have yet to have a pap smear, or ultrasounds, or anything besides lab and more lab. I am scheduled in 2maro with my onc, she's talking about restarting my treatment. Then right after, I have an appt with my surgeon. A year plus and the hemmy area has still not healed. They keep giving me creams and sitz baths, and nothing is happening. I'm going into both appts loaded for bear, and by god, someone is gonna do something. I have been in constant pain for about 15 months now...all without pain meds, but I also can't do anything. I can't be far away from a bathroom, I can't go thru a grocery store without having to sit and rest, sex...forget it. I am 50 yrs old, and if I cannot enjoy something in these these years, they may as well stop all treatments and I'll deal with whatever comes next. My arms look like those of a drug addict from blood draws and transfusions. Enough is enough. Melodie

sandysp's picture
Posts: 864
Joined: May 2011

I hope you can send your information to Sloan Kettering. I had Dr. Sonoda and think he is brilliant. We can't answer these questions as they are medical. To get into the Sloan system you just have to call them. They have a terrific web site. They will enter you into the system but before you can get an appointment you will need to send all test results, your biopsy slides, scans, etc. They will tell you more specifically on the phone when you call them. You can't just ask for a doctor. Once they review your file they will call you back within two weeks of receiving it and schedule you for an appointment within two weeks (usually a week and a half) and assign you a physician(s). This worked out great for me. Before I saw any of my doctors they had all carefully reviewed my file and consulted with one another (Colo-Rectal Surgeon, GYN Surgeon, Radiologist and Oncologist).

You need to be in the care of the best people. I don't know where you would go in your area but you are in NY so maybe there is a Sloan center near you.