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Need to talk to Anal Cancer Survivors who are Post Treatment.

cujuja4evr
Posts: 106
Joined: Jul 2010

I had the most bizarre appt with Radiologist today. I'm 3 months post treatment. I went in to Rad's office for follow-up. This Rad did not examine me once during my whole entire 6 weeks of treatments meaning she never saw any of my burns. Now, she examined me after everything had healed up. When I told her about the problems I had with painful bowel movements (which have now improved significantly) and about my severe vaginal stenosis, she looked at me in astonishment like she never heard of these problems occurring with radiation. Secondly, she told me that there is no sign of tumor - the cancer is gone. I asked her how she knew...did she review printouts from the treatments or something? She told me because she looked at the area around my anus and everything looked like it healed up nicely. She said that she could tell by looking that the tumor was gone! Thirdly, she said there was no need to do a CT scan because the tumor never showed up on the 1st CT Scan to begin with because the tumor was very small (2cm). When I mentioned to her that I spoke with some other anal cancer survivors who mentioned PET Scans, she said, "Oh yeah, that's a good idea. I'll go ahead and schedule you to have one done in 4 months." FOUR MONTHS?!!!!! Is that normal? That means that I won't have any scans done until I'm 7 months post treatment. According to most of the discussions I've read, it seems that everyone else has had a PET Scan or CT Scan somewhere around 3 months! Does that seem normal to you? I don't feel very confident about my appt today. I'm more worried now than ever. She didn't seem to believe me about the vaginal stenosis because she said that vag sten does not even start occuring until around 6 months after treatment has finished. I'm so confused!

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

I think your concerns are all very valid. I would guess that this rad onc had never treated anal cancer before, but you might want to call her and ask her. I can not believe that she not even once checked your skin while you were going through treatment--my rad onc checked me once a week and even more often during the last week. I would bet that had she treated anal cancer patients previously, she would have had a heads up about the painful BM's and vaginal stenosis, as I think most, if not all of us females, suffer both of these side effects. I also don't see any way that she could know the tumor was gone without 1) doing a DRE on you (and not just looking at the area around your anus) and 2) get a post-treatment scan at about 3 months. You were right in asking for a PET scan, but it would be indicated now, not in 4 months! As for vaginal stenosis not occurring for 6 months or so after treatment, that is SO not true! My rad onc gave me a vaginal dilator at the end of my treatment and told me to begin using it as soon as I felt healed up enough. If I were you, I would contact my med onc or colorectal doc and run all of this by them and tell them you have some real concerns about her lack of follow-up. Any of those doctors can order a scan for you--my med onc is always the doctor who orders my scans. Just curious--how old is this doctor? If she's young and recently graduated, you may have been her first case of anal cancer. They all have to have a first case, but the responsible ones will do their research and seek advice from other docs who have expertise with this disease, not just wing it. I'm so sorry you are having this experience, which has understandably produced lots of fear and uncertainty. Get with your other docs and get some answers, get that scan and let them know that you are not happy with this doctors care!

duckyann
Posts: 162
Joined: Jun 2009

I was also checked weekly by my radiation doctor and then had a post treatment exam at 1-2 weeks after treatments ended. I had my 1st follow-up PET scan 4 months post treatment and my scans will only be annually. I do have a friend who had anal cancer a yr prior to me and she did not have her first follow up PET until 9 months after her treatments. I think every doctor is different but if you are uncomfortable with what she says then you should tell her that you would like one sooner. If she doesn't comply could you ask your medical oncologist to order you one? My radiation doctor ordered the first one but my medical oncologist will be the one doing the ordering from now on. I don't even see the radiation doc anymore. Take care and I hope that you get some answers.

cujuja4evr
Posts: 106
Joined: Jul 2010

I think a 2nd opinion would put my mind at ease. If I need to get a 3rd opinion, I'll have to do that! The further along I get, the more nervous I get! The problem with speaking with my oncologist is that HE is the one that referred me to HER (the radiologist). I hate to say it, but he doesn't seem to be very knowledgeable about it either. HE (oncologist) actually told me that he didn't believe that my urethra had closed even AFTER I had been to a Urologist and the Urologist performed emergency surgery to dialate my urethra and insert a foley catheter which I had in for 3 weeks!!!!! Can you believe that crap?? I would think a Urologist who specializes in dealing with the urinary tract should know what he's talking about and when an oncologist 2nd guesses his opinion, that makes me very nervous about the cancer care team!!!

Thanks for responding! I appreciate your comments and suggestions!

cujuja4evr
Posts: 106
Joined: Jul 2010

After reading all of the posts here, I feel that my radiologist is not doing what she is supposed to. She really does seem inexperienced and I don't think I need to waste another moment dealing with her. I should be feeling great now that I'm at 3 months post treatment, but I'm just as worried today, if not more, than I was when I first found out I had cancer. I was released to go back to work today and a few people asked me, "Well, what did the doctor say? Is the cancer gone?" and I had to tell them, "To be honest, I don't know." That is a shame! I have absolutely no confidence in my radiologist. Time to move on to someone else. Now I'm beginning to question whether or not she did the right kind of treatment. Is the reason that I have "severe" vaginal stenosis is because of negligence on her part. I have so many questions that don't have answers to them, but I'm going to get the answers one way or another...MY LIFE DEPENDS ON IT!!!!

Thanks for your advice and encouragement. I feel that I'm not alone when I'm on this board. At least SOMEONE cares...my radiologist doesn't seem to.

Sorry...just venting!

sandra malone
Posts: 34
Joined: Apr 2010

I feel you have every right to be concerned,however,keep in mind that it can take up to 2yrs. for the body to fully recover from the cancer and the txs. I still habe extreme bouts od diareah and wear a pad CONSTANTLY. Partly bue to fecal leakage, partially due to bladder incontinence, which is a side effect of the rad.. My rad gave me a vaginal dialtor to avoid the stenosis. She did this this upon completion of my rad. So far I have not had any problem with stenosis. If you do not mind me asking, What state are u in?

cujuja4evr
Posts: 106
Joined: Jul 2010

I'm in VA. Glad to hear that you don't have any problem with stenosis. I was told by my gyn that I had severe vaginal stenosis. She referred me to an Onc Gyn. I'm having surgery on Sep 9th to repair damage done by radiation. Onc Gyn attempted, but was unable to do a proper exam. Exam was really painful for me so she says I need to be under anesthesia (sp?) so that I can be more comfortable and she will be able to do a thorough check. I'm just taking things one step and one day at a time.

sandra malone
Posts: 34
Joined: Apr 2010

I am a survivor. I am 8 months post tx. My onc.ordered me a ct scan IMMEDIATELYPOST TX, MY RAD ONC ordered me both a mammogram , pap smear, and lung xray. I was also ordered a ultrasound of my upper body to check for any damage done by the tx to other organs in my body. MY rad onc. did a rectal exam EVERY WEEK AND MORE IF i REPORTED ANY THING "UNUSUSAL'. Of course, shes my fav. doc. Very thorough and compasssiionate. Not to mentio brilliant. I have no real advice as I am not a Doc.,but I do suggest a 2nd or 3rd opinion,. I was also given a vaginal dilator as soon as my tx ws over. I have to admit, I didnt use it daily as prescribed.Sexual activity will also help when and if you fell up to it. There are long term side effects from our type of C. OH.!Almost forgot=most important= my tumor was1.5cm and it showed on both my CT and Pet scans. Call your doc(S) and request additional scans. It is imperative. They show what an outer anal exam cannot. Feel freee to email me back. We are together in tha battle and we on this board work with each other by providing experince, strnth and HOPE.

cujuja4evr
Posts: 106
Joined: Jul 2010

The more I read these posts, the more I'm convinced that something is not right with my cancer care! It just seems like everyone else is getting the proper attention from their radiologists. When I go to see my Radiologist, the tension is so thick in the room, you could cut it with a knife! I feel as if I'm a burden and even the nurse makes me very uneasy. The problem is that every time I tried to let them know what pain I was feeling, what side effects were causing me problems, etc. and they seemed nonchalant about it, I went to someone else like my GI doc or my GYN and THEY did something about the problems I was having and when they called to update my Radiologist, my Radiologist was upset because I went to someone other than her. But what did she expect??!! My Radiologist did not want me to take pain medicine and she was against me even having a catheter put it! SHE wasn't the one feeling the pain...I WAS!! It was hard enough dealing with KNOWING I had cancer and to have the people who are supposed to be treating me having an attitude certainly doesn't help! There must be SOMEONE I can make a complaint to. Maybe my insurance co? Hospital Administration? I just don't know. I should be getting rest and trying to stay stress-free as much as possible, but I find myself more stressed out dealing with the very people who should be trying to save my life!

Thanks so much for responding to my post. You have been so helpful!

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

It makes me sad (and mad!) to think that you could have two oncologists, neither of whom seem to have your best interest in mind here. I believe that "tension" you mention that is in the room with the rad onc and his nurse is a clear sign that they really don't know what they're doing. Sadly, there are no "do overs" when it comes to radiation treatment, but you certainly deserve answers to all of your questions and concerns and these doctors are not giving you that. Do you have a primary care doctor who can help you get some answers? Or perhaps the urologist who actually seems to not have his head up his a**? When doctors fail to do their jobs and patients are forced to go to another doctor for help, that's a clear signal that they are negligent. If you have complaints you would like heard about these doctors, you can file such with the medical licensing board in your state.

cujuja4evr
Posts: 106
Joined: Jul 2010

You have good reason to be sad and mad. I've been getting so many suggestions on what to do. Everybody seems to be sided with me. I work at a court and a couple of attorneys I spoke to said I have a very good case if I decide to file suit against doc. But, to be quite honest, I really just want my Oncologist aware of what I have been going through. But, he himself, had been just as nasty towards me...I think my Rad Doc may have called him and got to tell him HER side of the story and when I met with him, he actually had attitude with me and treated me like I was a child. These doggone doctors need to realize that it's not like we placed a mail order for cancer. We didn't look in some magazine and point out the kind of cancer we wanted to get for our birthday!!! Coincidently, my treatments started on my birthday and wedding anniversary (I got married on my birthday!) We didn't pick out two or three types of cancer and decided which was fit the best!!! Got my drift! Sorry, I'm venting, but I've got so much anger built up inside it is eating away at me day by day! This is my first experience with any type of illness. My whole life I had been an athlete, extremely energetic and was in very good shape...or at least I thought I was. I rarely ever had to visit a doctor other than getting prescriptions refills and annual gyn exams. Other than that, it seemed like I was having money deducted out of my paycheck for insurance which I didn't really need. HAH! Boy, was I wrong. I thank God everyday that I had insurance when my cancer was discovered...too bad I didn't have more caring doctors!

Thank you so much for sticking in there with me. I really need the support from other cancer survivors. I will let you know how consult with Oncologist goes, K? Hopefully, they can schedule me as soon as possible!

mp327's picture
mp327
Posts: 2818
Joined: Jan 2010

I worked for an internist for 6 years and I can assure you, nothing gets their attention like the threat of a lawsuit. However, I understand why you would choose not to do this. I couldn't agree more, though, that these doctors need a wake up call about the poor treatment you've been given. I hope you have been keeping a journal of each and every day of your journey so you can go back and refer to some of these poor judgement calls made by the doctors. I still feel that filing a complaint with the licensing board would be a proper thing to do, but you must have some documentation which back up your complaints. Please keep me posted on how things go.

cujuja4evr
Posts: 106
Joined: Jul 2010

Unfortunately, I didn't keep a log. I mean, I don't think I'll ever forget all the bad stuff I went through. I was given a couple of journals from ladies in my office and I was planning on logging, but when treatments started to get real rough, the last thing I wanted to do was keep anything that reminded me of the pain and agony I suffered. But, I know ONE thing...my radiologist NEVER examined me one time to check the condition of my skin for burns caused by the radiation and THAT in itself is inexcusable!

Thanks for your support. I'll keep you posted!

sandra malone
Posts: 34
Joined: Apr 2010

AS I've already said I saw my rad doc every Monday and she did a physical exam everytime. She decided when it was time to go on rx for both diarah and burns.Silverdene cream.Miracle drug for burns,if you need it U ASK HER . iNEXCUSABLE IS ABSOLUTELY CORRECT. This of course based on my own course of tx.

ranelle65
Posts: 63
Joined: Jul 2010

I saw the Rad Dr once a week while I was having daily radiation treatments. She saw my 3rd degree burns, took note that I had what I thought was a vaginal yeast infection, and prescribes meds to take care of all my ailments in that area. After the treatments (chemo and radiation) were done, my oncologist (not the radiation dr) made appointments for me to have a follow-up PET scan and a CT scan. The radiation dr said the PET scan didn't show cancer the first time, and I had to explain that surgery removed the cancer/hemorrhoid and some of the nearby tissue. Then she went on to say that the CT scan wouldn't show cancer either because the cancer was gone...kinda crazy. But, it's MY care so I requested that all the scheduling of appointments went through my oncologist. He seemed to be way more on the ball with what was going on in my case. As far as vaginal stenosis, I have not noticed much other that some discharge, probably the yeast type infection. I imagine that once my husband and I begin our sexual relations again, I might encounter problems, but will just have to tackle them as they occur. Only being one week out of radiation treatments, I sure don't want anything in that area while the skin surfaces are trying to recover, and while I'm still having bowel issues (having diarrhea or acid output). That in itself hurts -- sometimes feels like my intestines are trying to come out the anal opening... I hope your recovery is not like mine, and that you heal very quickly without any issues.

cujuja4evr
Posts: 106
Joined: Jul 2010

Well, I'm glad that you didn't have the experience that I did. I'm going to schedule a consult with my Oncologist to make him aware of who and what he referred me to. I'm going to write down all of my concerns regarding my Rad Doc/Nurse and the care that I have been getting. I'm also going to request that HE (the oncologist) order a scan because there is NO WAY I'm going to wait until December or January when I finished my treatment in June!!! I'll keep the board posted as to the outcome of meeting with Oncologist.

Doesn't sound like you have experienced vaginal stenosis, but you still have time to do something about it before it starts. Unfortunately, I didn't find this board until AFTER I completed my treatments on June 7th. Then it took me another week or so until I started reading posts about women suffering from vaginal fusing. I immediately scheduled an appt with my GYN but I was too late. She discovered that I had a severe case of vaginal stenosis and there was nothing more she could do for me other than refer me to an Oncologist Gyn. My GYN was not able to get a Q-tip with KY Jelly inserted. She said that I had completely closed up and it would probably take surgery to correct the problem. Then I still have to deal with having the size of vaginal canal increased if I ever want to continue sexual activity again. I'm so afraid that I'll never be able to have sex again! If I do, it will probably be extremely painful. I'm not even able to use dialators at this point in time because there is no way they, even the smallest size, would even fit. This radiation just melted me inside. What a cruel, cruel disease!

sissy310
Posts: 300
Joined: May 2010

My radiologist looked at me every week and checked for changes or problems. She listened if I had concerns and gave me meds or creams when I needed them. My oncologist was the same. I received a vaginal dilator before treatment began and was told to use it a few times a week during treatment and after treatment. I can't believe your radiologist did not even look at you all through treatment. I'm am just post treatment meaning I have an appt in two weeks with my oncologist and one two weeks later with my radiologist (or maybe it is the other way around, have to look at my calendar). They are scheduling me for a scan in 8-12 weeks and I will also need to see my colo-rectal surgeon for a DRE. I feel very comfortable with the way my cancer has been handled and I am glad you are going to pursue yours strongly to get to the bottom of things and get real answers.

cujuja4evr
Posts: 106
Joined: Jul 2010

I have a consult with my oncologist next week to discuss my concerns. I'm trying to be positive and I really don't want to get anyone in trouble, but I'm concerned about my life and I want to make sure that I'm doing everything possible so that I'll be around to see my daughter grow up. I just want to be resassured that the treatments worked. I'm more nervous now than when I was first told I had cancer. I'm hoping I'll finally get the answers and results that I'm looking for. Thanks for your support and encouragement.

sissy310
Posts: 300
Joined: May 2010

Do not worry about getting anyone in trouble. You are being aggressive and fighting for your life, wanting the best treatment possible and I understand that. I was fortunate that my radiologist understood about anal cancer and followed up with me every week. My oncologist did the same. While they were actually working in two separate areas of treatment, they both visually looked at me weekly. You have to have faith in your team so I do not blame you in the slightest for seeking out better care. Don't worry, I'm sure that everything is fine - it's just that doctors all do things so differently we tend to wonder if we are getting the right kind of care or not. I'm also hoping you get the answers you need to hear and keep me posted on that. I would like to know what happens and the follow up. Be well, Marilyne

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