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MRI and Anal Ultrasound New to here...

gjjmcsb
Posts: 11
Joined: Jan 2012

Hi everyone,

I have been reading the site for awhile now and finally have decided to post. I am only 29 years old so I cannot believe any of this is happening. But it is and my symptoms have progressively gotten worse over the last 3 months. I have not officially been diagnosed with anal cancer although I feel it is coming. I have seen 2 doctors already, one general surgeon and a gynocologist who have not given me any diagnosis. So I went to a colorectal surgeon just last week. I have a mass or lump around my anus that has been there for months now. My colorectal surgeon says it is either a tumor or endometriosis in the anus(which is extremely rare, rarer than anal cancer even). I have had a anoscopy and colonscopy done which were both clear. The doctors I have seen can feel the lump they just cannot see it as it is in the perianal area. I do not have HPV and everything gynocologically is normal. I had a CT scan only of abdomen and it showed thickening of the uterus and fallopian tubes as well as excess fluid in the peritoneal cavity. The CT scan did not scan the anal area(I don't know why the doctor did not order it to!) which is of course why I am now getting the MRI done of the lower pelvis and thighs and anal area. I will have an MRI done tomorrow and an anal ultrasound next week. I have a few questions about these tests if anyone has any experience with them and getting the correct diagnosis. My questions are these:

If the mass is inside or around the sphincter muscle will it show up on the MRI scan? My fear is that the scan will show nothing but the lump is there. You can see and feel it as plain as day.

If the MRI and ultrasound show nothing then do I ask for a biopsy of the lump?

Have there been instances with any of you where the scan showed no tumor but you had a biopsy done and it was cancerous?

My doctor has not suggested a biopsy yet which I do not understand why. He just wanted the MRI and ultrasound done first. Is this normal procedure to have done first before a biopsy?

The last time I did an enema for the colonscopy it was extremely painful and burned. Have any of you had that experience with doing the bowel prep enemas? I have to do one again next week for the anal ultrasound and I am dreading it. Was this something that was painful for you all ever?

My myriad of symptoms has been ongoing but the most alarming of late are these:

Presence of the lump/mass in perianal area connected to the anal sphincter muscle. The lump is at least 3 cm but feels as if it has gotten bigger as it is now extending towards the back of my vagina entrance.
Rectal bleeding for one year not due to hemmorhoids as colonscopy and anoscopy showed none there.
Pain radiating in right hip and right buttock. This is the newest symptom and most painful but it is only on the right side.
Nausea on/off
Fatigue for months
Anemia
Bladder urgency in last month
Constipation in last couple of months

I am anxiously awaiting any response any of you have for me. I am trying so hard to make sure I get the correct tests done and get the correct diagnosis. Thank you for any of your help. You are all very brave and I have read many of your posts. Most of which have helped me to feel better already to know that if it is what I think it is then I can get through it.

Thank you,
Carol

mp327's picture
mp327
Posts: 2879
Joined: Jan 2010

I'm sorry your troubling symptoms have brought you here. You have asked some very good questions, but I will admit, I do not have all the answers. First off, I don't understand why your doctor has not performed a biopsy on this mass, which would rule in or rule out cancer cells. I would INSIST that a biopsy be done. If it should come back positive for cancer, then the next thing I would request would be a PET scan to find out if the mass/tumor is localized or spread anywhere else. I know MRI is sometimes used for anal cancer patients and CT is more commonly used. However, PET scans can often find things that these other two scans can not. The ultrasound may shed some light on what is there. I have never had a rectal US, so I can't give you any tips on what to expect with that exam. As for enema prep prior to a scope, I've never had to do that. If that was a painful experience for you, then obviously something is there to cause that pain. The symptoms I had prior to diagnosis in June 2008 were: Rectal bleeding, bloating, constipation, a feeling of always having to have a BM (even after just having one) and never feeling emptied out; weight loss; fatigue. At the time of my diagnosis, bloodwork showed me to be anemic. So, you have a lot of the same symptoms I experienced. I underwent 6 weeks of chemo and radiation and am over 3 years post-treatment and doing well. I was very fortunate in that my colorectal doctor has experience in treating anal cancer. If you feel that your colorectal doc is not handling your case appropriately, then please seek another opinion from a doctor who has treated anal cancer before. If you don't mind telling me where you are located, I could perhaps make a suggestion to help you find another doctor.

gjjmcsb
Posts: 11
Joined: Jan 2012

Thanks for the reply. You have asked some good questions too that I do not know the answer to either! I do not know why he has not asked for a biopsy either. I live in the North Georgia mountains in a very rural area. The first doctor I went to who is a general surgeon is the one who did the colonscopy and ordered the CT scan. After the colonscopy he said that he did not think it was a mass because when he put me under the area relaxed so he thought it was a muscle spasm but did not know for sure. He thought I had endometriosis which had spread in the pelvic area and could be what was causing the pain and bleeding. The CT scan showed the thickening of the uterus and fallopian tubes which is why he thought this. After much research most endo never shows up on a CT scan. The symptms seemed to fit but not fit. I was sent to the OB/GYN for her opinion and she did not think it was endo but instead referred me to a pelvic pain doctor in Tennessee! I thought to myself no way. I think she thought it was all in my head or something. But I thought this is not right. The lump/mass is THERE! I can FEEL the lump. You can see it. She felt it. And the doctor I have now felt it. But noone seems to be able to give me a good answer. I have never heard of a 24 hour a day/7 days a week muscle spasm either! I think the spasm disease is called protalgia fugax or something like that. My symptoms don't fit with that disease though either so I know it is not that. I know my body and well its just not a spasm it is a lump. The pain in my right side is so new and I've never had this kind of pain before. It comes and goes and radiates all the way out to my hip.

I feel more comfortable with the colorectal surgeon I have now who is in the Atlanta, GA area and has many years experience with this. However my appointment with him was not very revealing either. He said there was something there and it could be a tumor or endometriosis but he couldn't see anything with the anoscopy thus the need for the MRI and ultrasound. I will definitely ask for a biopsy when he calls me with the MRI results. I thought all along that the biopsy would be best thing to do because the lump is right there is would be easy to take a sample of it. I am guessing the MRI results will be in sometime next week so I am hopeful it will show something. It has been hard because I feel like noone has listened to me even though they can feel and see the darn lump!

Did you have an MRI and/or CT scan and if so did it show your mass?
Why would he request the MRI and anal ultrasound and not a biopsy if he felt the mass there?

It all doesn't make sense and maybe I do need to go to yet another doctor! I am of course open to suggestions if you have any around the Atlanta, GA area. Thank you so much for your response. I have spoken to my family about this stuff over and over but they just don't really understand why I am so frustrated and looking for answers over this. All I know is there is something there and its getting worse.

Phoebesnow
Posts: 447
Joined: Apr 2011

Whatever the reason you are being led round and round, it has to stop now. You need to take charge and direct them. U need a pet scan and a biopsy. U need a doctor who is going to order these tests for you. Your case sounds very similar to mine. You know something is wrong. You have to be your own advocate. Do not wait for an appointment three weeks from now, explain the rigmarole that you have been thru in the past three months. Cancer is big business and people will take your money and your insurance companies money if you let them.

I was diagnosed during colonscopy, I also had polyps, followed by a pet scan and then ct for radiation planning..

Are you poops getting thinner?

Your symptoms are very similar to mine. I do have burning with the enema also. I also throw up from the enemas and the colonprep. They want me next time to stay on a liquid diet for two days instead of one.

I am hoping the best for you, I know it is difficult being so young but you will be ok.

mp327's picture
mp327
Posts: 2879
Joined: Jan 2010

I am SO glad you gave me your location, as I live in North Georgia too! You did not say who your colorectal doctor in the Atlanta area is, but mine is Dr. Marion Schertzer (a female) who is with Georgia Colon & Rectal. I see her in their Cumming office. She is very familiar with anal cancer and told me on my first visit, after doing an anoscope, that I had anal cancer. She performed a colonoscopy with biopsy two days later and the results came back confirming her diagnosis. I like her so much and have referred another person in this area to her who also likes her. I believe she knows her stuff when it comes to this disease. I am going to give you the phone number for that group: (404) 851-1336. Their Cumming office, which would probably be the closest to you, phone number is: (678)455-6807. It is located on the campus of Northside Hospital Forsyth right along GA 400 at Hwy. 20. They also have a website at www.gcrsa.com. I hope you'll seriously consider making an appt. with Dr. Schertzer. Let me know if I can provide any additional information for you. If you would like to send me a private message, please do so.

Martha

Phoebesnow
Posts: 447
Joined: Apr 2011

All the paths lead to home. I always think of this phrase like the coincidence that Martha and carol are in the same area. I really believe that there are no coincidences.

I posted this comment on another thread, what about needle biopsy or guided imagery. Seems like there would be less side effects.

gjjmcsb
Posts: 11
Joined: Jan 2012

Martha and Pheobe,

Thank you so much for your replies. Martha I can't believe you are in Georgia! That is great. I think I will switch to your doctor as soon as I have both the MRI and anal ultrasound done. I went to see Dr. Pennington in Lawrenceville just last week. I just found him on the Internet and he was closest to where I live. Honestly I just picked blindly because I needed one. I think as soon as I get the results of those 2 scans I will go ahead and make an appointment with the doctor you recommended and have everything sent there. Dr. Pennington was okay but I expected a little more from the appointment and left feeling very disappointed yet again. Thanks for the information for your doctor. That actually helps a lot. Phoebe, you too had the burning from the enema? I have researched and researched this but found nothing, I thought I was going to die it hurt so bad. The burning and stinging went on forever every time I had to go. I was literally crying the entire time and yet I was told it was not supposed to hurt. I will have to bear through that yet again next week which I am not looking forward to. I will certainly ask for the biopsy. I can't believe I did not ask about it before. I guess I thought if it's a tumor it would show up on the scans. I already had the CT scan but the surgeon i was seeing was not a specialist and the scan should've gone down further in my pelvis but it didn't, So now i have yet another deductible to meet. Did both of your tumors/masses show up on the scans you had done? I am just worried the scan won't show anything I guess. I do not have thinning stools, I don't the mass is growing that way but is instead pushing out towards back of my vagina entrance. Sorry to be so graphic.

mp327's picture
mp327
Posts: 2879
Joined: Jan 2010

Well, it is a small world indeed. Not only do you and I live in close proximity, but we have seen doctors who are in the same practice. I'm not familiar with Dr. Pennington, I just know he is in the same group as Dr. Schertzer. I hope that you can get in with her and that there won't be any conflicts regarding changing docs in the same group. Let me know how that goes.

My tumor showed up on my first scan which was a PET scan. I really would insist on a PET scan initially, as they can find things that CT's can not in some cases.

Please keep me posted on how things unfold for you. I hope you will be able to see Dr. Schertzer.

Martha

mxperry220
Posts: 360
Joined: Mar 2011

I am now 3 years post treatment for anal cancer. My primary care physician ordered a colonoscopy and that is where they discovered my tumor. They took a biopsy of my tumor at the time they did my colonoscopy. This is when they diagnosed me with anal cancer. Before treatments the doctors ordered a CT scan, MRI, and PET scan. The doctors said this combination of the three scans would more accurately tell them how to proceed with my tumor treatment. After the scan results came back the radiation oncologist and chemo doctor then developed a treatment plan. I was treated at Baylor Plano in the Dallas Fort Worth area. They did a fantastic job treating my cancer.

I would strongly suggest you get treatment from doctors who have treated other anal cancer patients. I asked my doctors how many anal cancer patients they treated each year before my treatments started.

Hope this helps some.

alis7910
Posts: 80
Joined: Jun 2010

Carol:
Sounds like you are on your way to get good, focused medical care.I wonder why you had to take the enemas; I always had the oral preps. I would see if you can get the oral preps instead.
I hope you get a diagnosis soon; at least you would then know what you are dealing with.

Please keep us posted! hugs to you.
Alison

gjjmcsb
Posts: 11
Joined: Jan 2012

I just received a call from my doctor about my MRI yesterday. They messed up and got NO pictures of the anal mass. They also found narrowing of my rectal sigmoid 5 inches above the dentate line. I HAVE NO IDEA WHAT THIS MEANS. The doctor wants to wait until after the anal ultrasound to see if it shows the mass then do a biopsy once they have seen the mass. There was also fluid in my abdomen again just like there was on the CT scan. Please help me. What does this mean? The doctor has no answers yet and is hesistate to say anything about what he thinks it is. I have had the colonscopy and it was clear so what is causing narrowing of the rectal sigmoid? Could this be cancer too? Have any of you had this??

mp327's picture
mp327
Posts: 2879
Joined: Jan 2010

I'm sorry to hear that the MRI results did not include the anal mass. As for the narrowing of the rectum, I've heard of cases of anal cancer where the tumor actually grows into the rectum. This could be the case here. As for the abdominal fluid (ascites), I'm not sure what this might be caused from. Is there a possibility that you can have a PET scan? I would request one, since the MRI results were inconclusive. Have you requested a change of doctors yet?

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