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beginning symptoms...

jleitner
Posts: 5
Joined: Apr 2008

I truly appreciate you all telling your stories for others to learn by.
I'm curious to know if any women who have been diagnosed here experienced a sensation to have a bm every time they went to urinate. (Not sure if question was graphic enough to warrant a "slightly graphic" tag, sorry)
Also, I have hemorroids. With 6 kids and a severe constipation problem what else would I expect, huh? lol
I have read posts where some of you thought you just had hemorroids to find you actually had cancer. I have one hemorroid that is fairly large and seems as if it's growing. Not sure if its external or internal and "protuding out". I thought I would have them removed. I called a gastroenterologist and the nurse said they do not do that but you would have to use a surgeon. Is this true? Also, did your dr. explain what the difference between the hemorroid and the cancer was, for instance soft/hard, bleeding constantly/occasionally, color, external/internal?
I also have had bleeding covering my stool on multiple occasions, but not all the time.
Just curious if this sounds like hemorroids or if it warrants further investigation, and if so, who would be the go to guy?
Thanks in advance and my best wishes for a quick healthy recovery!

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

I was diagnosed with anal cancer in June 2008 by a colorectal doctor after my former internist misdiagnosed me with a bleeding hemorrhoid. I will give you a list of my symptoms below.

1) Blood in stools (I also had blood covering my stools)
2) Chronic constipation
3) A feeling of never being completely emptied out, even after a BM--like I always needed to go
4) Abdominal bloating and cramping
5) Stools thin in diameter
6) Mucous with BM's
7) Unexplained weight loss

My doctor did not explain to me the differences you refer to in your post between a tumor and a hemorrhoid. However, since my internist incorrectly diagnosed me, and so many others with anal cancer have had the same experience, I advise anyone with any of the above symptoms to get an opinion from a specialist who can do anoscopy and actually get a visual of what is there. The only way to know for sure is to biopsy any lesion that looks suspicious. My recommendation is that you contact a colorectal surgeon and have this looked at. I wish you the best and hope that it is, indeed, a hemorrhoid.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

I had not noticed any symptoms but after a routine gyn exam in the fall, the PA said I had a spot in my anal canal that, while consistent with an internal hemorrhoid, should be checked further. I had a new PCP (primary care physician) who told me it was consistent with a hemorrhoid and did nothing else. I ended up with another new PCP 4 months later to whom I could report some blood on occasion. She agreed with former opinions that it was a hemorrhoid. Three months after that, I had started experiencing some pain but it was still deemed a hemorrhoid. Now into the following summer, we tried a cortisone regimen but by Labor Day, I was unable to function well at a picnic I organize every year (standing was uncomfortable and more pain) so I determined to get my PCP to do further testing. The way our great medical system works, it was December before we could get the colonoscopy that found the tumor. By this time I was experiencing difficult BMs and discomfort in some sitting positions and blood more often. I was using the max recommended naproxen sodium for pain control.

Bottom line is that I would make someone actually take a look with a scope - sigmoidoscopy would likely clarify your situation.

msannstar's picture
msannstar
Posts: 7
Joined: Sep 2009

I had all the symptoms u did and my doctors telling me it was hemorrhoids in 2008, had a colonoscopy also in 2008 it showed nothing wrong and at the time my rectum skin was looking awful like a open sore just growing. Not until I went to another Doctor because every time I had a BM I was in awful pain this Doctor had me take a colonoscopy also and July 10, 2009 I was dx'ed with anal cancer on the outside of the skin. Then I had biopsy of lymph nodes of the groin and was dx'ed Anal Cancer 3B the cancer had spread to two lymph nodes in my groin , one on the left groin and one on the right side. So I was so thankful this doctor did another colonoscopy.

dmid
Posts: 2
Joined: Jul 2014

Hello I have the same symptoms you mentioned above and am curious as to what the diagnosis was. Glad to find anyone with similar symptoms, was lost.  Thank you, darrell

sissy310
Posts: 300
Joined: May 2010

Well said. I wish I had read this 6 months ago but now that I know what I know I think this should be put on a billboard so individuals are educated and seek help early.

sissy310
Posts: 300
Joined: May 2010

Well said. I wish I had read this 6 months ago but now that I know what I know I think this should be put on a billboard so individuals are educated and seek help early.

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

I had not noticed any symptoms but after a routine gyn exam in the fall, the PA said I had a spot in my anal canal that, while consistent with an internal hemorrhoid, should be checked further. I had a new PCP (primary care physician) who told me it was consistent with a hemorrhoid and did nothing else. I ended up with another new PCP 4 months later to whom I could report some blood on occasion. She agreed with former opinions that it was a hemorrhoid. Three months after that, I had started experiencing some pain but it was still deemed a hemorrhoid. Now into the following summer, we tried a cortisone regimen but by Labor Day, I was unable to function well at a picnic I organize every year (standing was uncomfortable and more pain) so I determined to get my PCP to do further testing. The way our great medical system works, it was December before we could get the colonoscopy that found the tumor. By this time I was experiencing difficult BMs and discomfort in some sitting positions and blood more often. I was using the max recommended naproxen sodium for pain control.

Bottom line is that I would make someone actually take a look with a scope - sigmoidoscopy would likely clarify your situation.

ACW189
Posts: 24
Joined: Feb 2009

I have gravitated to this and another blog and it's amazing how many stories I've heard about misdiagnosis as hemorroid. My internist thought mine was a hemorroid too but since I was due for a colonoscopy, he decided to order it and that is when they found the cancer. It actually was situated ON a hemorroid and could be felt as a rough patch. I had a biopsy which was definitive Stage I anal canal cancer. "hemi's" and anal canal cancer symptoms are often similiar. Have the discussion with your doctor!!!
ACW

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

I think I'm going to stop by my regular doctor's office this week and give him a hug. I had minor bleeding, barely a spot 4 times over 4 weeks. The 4th time it happened I thought I should go to the doctor, thinking it's probably a hemi even though I had no other symptoms that I can remember. He immediately sent me to a colorectal doctor that same day. He was going to do the exam himself and then said, " It is probably nothing, but let's be sure" so he called the colorectal doc's office and asked if they would see me that day. Of course they did the exam and the rest is history. Colonoscopy next day biopsy results day after that. Off to MD Anderson 4 days later. My regular doctor doesn't take any chances and I am so grateful for that. After all the stories I've read I'm going there for sure to tell him how grateful I am.

Liz

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

Liz--

Your primary care physician sounds like a gem and I would give him a big hug also if I were you. Too many times, people (such as myself) are given a misdiagnosis of bleeding hemorrhoids because more often than not, that is the cause of rectal bleeding. However, it really disturbs me that these doctors don't have the same attitude as yours and take every measure to rule out anything more serious. You know what they say about when people "assume." Well, when doctors assume it's a hemorrhoid and it turns out to be cancer, it's the patient's ass, not theirs, that suffers. This has to stop! I'm so glad that your experience was not like mine.

jleitner
Posts: 5
Joined: Apr 2008

Liz, I wish I had someone I knew that I could go to as you do. I always feel so disconnected with doctors. I had one done three years ago, for the same bleeding and constipation. They found one polyp and it was benign. My mother had one the same year with three cancerous polyps removed. They said I didn't need to go back for 5 or more years, so I'm not sure what to do. I also didn't have this growing hemrroid either, though. Thanks again for responding it was really helpful.

MajorD
Posts: 1
Joined: Mar 2010

Hello....I had the same symptoms you talk about. Went to my primary care doctor and he was treating it with a "heat needle" (for lack of a better term). This was supposed to kill the hemorrhoid. Didn't like the treatment and went to a Specialist (Gastroenterology)....got scoped. He found that I had a Rectal Neoplasm (not a hemorrhoid). I was told this is not a common thing. I did my due diligence to find an experienced surgeon. I found such a doctor and had it removed. I was fortunate in that it had a defined stalk (it looks somewhat like a mushroom) instead of looking like a tree root system. Unfortunately there are cancer cells present (T-1). I'm going to Moffitt Cancer Center in Tampa, Fl in a few days to consult with a specialist. No idea what the treatment will be.

I hope that the above is of help to you. I would follow up to make sure that all you have is a "run of the mill hemmie".....Best Wishes.....MajorD

sissy310
Posts: 300
Joined: May 2010

I found this portion quite interesting in that everyone assumed they had hemorrhoids...I too thought I had them as off and on all through my life had suffered with them. Around the time of my son's wedding in early 09, I started having the bleeding, etc. Went to dr. who asked when I had my last colonoscopy (had that in late summer 07, only one polyp, nothing else). They started treating me for hemorrhoids. Off and on bleeding until I went back in early 2010 and was looked at by my regular MD with a scope who then sent me to a surgeon. The surgeon looked and told me to try more fiber and come back in two weeks because everything looked raw and I had a bad fissure, if that did not work would have to have a hemorroidectomy. Well that seemed to work, bleeding stopped, everythign seemed to be smoother and then I lifted a steam cleaner while helping my kids clean a carpet and started to have worse symptoms and more bleeding. Went back to my dr and then the surgeon and was scheduled for hemorroidectomy. He found not only hemorroids but also a mass that was biopsided and came back as squamous cell - I'm heading to the first surgeon today for a pre-op and maybe more questions and tomorrow to another colo-rectal doctor for a possible second surgery to remove what the first one did not. Part of it I guess was my not being aggressive enough about the bleeding, assuming it was hemorroids especially with the good colonoscopy and part of it I'm upsset with the doctors for not recognizing it themselves but then it is probably so rare they do not know what they are looking for. So, I found this section of the posts more than interesting.

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

Your story is much like many others' stories--misdiagnosed with bleeding hemorrhoids. Add me to that group. It infuriates me so much that doctors, such as my internist at the time, will do a simple DRE, make a diagnosis of bleeding hemorrhoids, and send the patient on their way, having not seen what was really there. As in my case, obviously some doctors can not feel the difference between a hemorrhoid and a tumor.

The other thing to keep in mind is that colonoscopies are great exams for the colon and rectum, but not the best exam for the anal canal. Often times, the scope will be pulled out too quickly (because at that point, the exam is almost done) and the anal canal is not viewed at all. If someone who is experiencing rectal bleeding comes back with a "clean" colonoscopy, the next step should be requesting anoscopy, which looks at the anal canal. I find that most people think colonoscopies should find anything from the colon on down to the anus, but that isn't necessarily true. And most people have never heard of anoscopy. Oh, the things we learn once we are diagnosed with this cancer!

pbs1203
Posts: 3
Joined: Jun 2010

mp,
As I recover I have time to think of the shoulda, coulda, wouldas I didn't do before the fateful diagnosis. I have missed time with my grandchildren and with my family, not to mention the disruptions to their lives when it was necessary to care for me.
The more you know...the more you are responsible for and believe me I have an understanding that could not been realized before.

sissy310
Posts: 300
Joined: May 2010

This is exactly true. I asked the surgeon today who performed the initial hemi surgery why the colonoscopy did not see it and he explained it exactly like you did. I have my pathology report now and will see another colo-rectal surgeon tomorrow and his team to see what needs to be done. Still...how can people be convinced to go for colonoscopies if there is a chance it will be missed? Scary isn't it? Anoscopy? Interesting. I'm learning so much. My husband is already ready to apologize to the doctor tomorrow as I've gone on a massive hunt for information and have dozens of questions to ask him. Thanks for responding to what I and others have written to give us more information. I will do the same as I learn more too. Be well. Marilyne

pbs1203
Posts: 3
Joined: Jun 2010

Dear J,
I was diagnosed with anal canal cancer in Dec of 09 AFTER going a year with bleeding "hemorroids" and after having two colonoscopys showing a hemorroid and was advised to EAT MORE FIBER. The bleeding continued and worsened when I lifted my grandchild, or did heavy housework. The bleeding got better when I kept my activities
easy but itching persisted and bloody stools were often present. After a year of this
I finally just decided I needed to get the hemorroid removed. I went to a surgeon who
examined me digitally....(finger in rectum, by the way nothing about anal cancer is pretty so be very proactive about your health) and told me it was not a hemorrhoid and that he was going to biopsy it the next day. Fortunately, I had asked my daughter and husband to come to the Dr. with me because I knew that hemorrhoid surgery was problem going to be rough and I needed them for moral support. When the surgeon asked me about when I had had a colonscopy I told him 8 months earlier and that the result said hemorrhoids. He said and this is very important A GOOD DOCTOR CAN TELL THE DIFFERENCE BETWEEN A HEMORRHOID AND A TURMOR BY A DIGITAL EXAM. If your Doctor does NOT do a digital exam he might miss a cancerous tumor...like mine did. My dr. had done two colonoscopys but never in the 2 years I was treated by him had he done a rectal exam. So my long, painful story with anal cancer began.

I URGE YOU TO SEE A SURGEON WHO IS ABLE TO DO HEMORRHOID SURGERY BUT IS ALSO ADEPT AT TELLING THE DIFFERENCE BETWEEN A HEMORRHOID AND SOMETHING MORE SERIOUS. By the way,
I never had any pain and only because of the inconvenience of the bleeding did I finally decide to go to the Dr.. I didn't consider the itching A Medical priority. My family expecially my sister and daughter who has seen the amount of the blood in the stool where very concerned and kept pushing me to go to the DR. so reluctantly I did. Thank God.
I was in Stage Two by the time I did get treatment. Treatment is no joke it's the sickest I've ever been in my whole life. DON'T LET THIS HAPPEN TO YOU.

sissy310
Posts: 300
Joined: May 2010

The same thing happened to me. I went back four times over the year, first told to eat more fiber and given anusol to shrink the hemis and then finally went to a colo-rectal surgeon who looked and said I was pretty shredded in there, had hemi's and to try change in diet first rather than do surgery. Started to do that diligently and that seemed to help for a few weeks but then lifted something heavy and had more bleeding and pain and itching. Went back to my regular MD and he looked inside when I said perhaps I have a prolapse or a rectocele like I had in 95 (symptoms are similar) and he checked both anal and vaginal (I had a full hysterctomy in 95 so I no longer have any reproductive organs)and he also used a small scope to look and said there was a hemi higher up (now I know it was not a hemi but a tumor). suggested I go back to the surgeon which I did and he scheduled me for surgery to remove hemi but because I told him I also had mucus he decided to look a little further up and he was the one who found the tumor and removed most of it at that time and sent for biopsy. It just seems to me that all this running around was unnecessary for both of us and from what I am reading many others. There should be more information out there for people to understand and be more aggressive about having their doctors do more and for doctors not to just push it aside and assume it is a hemi when it could be something more. I also had a colonoscopy in late summer 07 and these symptoms started occurring in early 09...each time I was asked did you have a colonoscopy and I said yes and each time it was assumed it was hemi's and nothing more. Ah well, we shall all get through this together and one step and one day at a time. Keep the faith. Keep me posted. Marilyne

macandcheese
Posts: 1
Joined: Jun 2010

Hi All. I wish I had found this site a long time ago!!!!! I guess I was one of the luckier ones from what I have read....I was at my regular doctor's office for an unrelated issue and at the end of the appointment I mentioned that I had been having some bright red bleeding with bowel movements for about 6 weeks. No pain, no itching, no constipation, no nothing else. She gave me a digital exam and said right away that she felt something that shouldn't be there. Within 2 days, I was having a colonoscopy/biopsy. The biopsy result was positive for squamous cell cancer. I started treatment within 2 weeks. 28 radiation treatments and week 1 and week 5 was chemo - mitamycin and 5FU by pump for 5 days. I was hospitalized 3/4 of the way through because I was burned so badly in my pelvic area front and back and in an extreme amount of pain. After radiation, I started to get up, move around more, start walking/exercising and had horrible hip pain. The drs say its not from treatment, it must be something else. MTI showed no hip problem but some spinal stenosis and facet degeneration which could be causing the pain. I have had fibromyalgia for 15 yrs and this is not the usual fibro pain. The drs all feel it must be fibro but I disagree. That sent me to the internet for research and I found that I am not alone with these symptoms. Knowing that helps some. My numbers are also still lagging - WBC, RBC, hemoglobin, hematocrit and abs lymph are still low. I am 16 weeks out of treatment and am still not back to work. I still cannot sit for long periods....if I went back to work now I would surely get fired!! Anyway, does anyone find themselves in my same position? I still get easily winded and tired - and some days absolutely cannot even hardly move! Appreciate it, Dawn

lemonade
Posts: 62
Joined: Feb 2010

Three months after treatment, I started having pelvic pain. I ended up in physical therapy and I do stretching exercises 3X per week. After radiation, it seems that they don't have time to deal with the after-effects. There are more patients to treat. I ended up being referred to PT by my shoulder orthopedic surgeon. It helps with the pain, but I'm still not quite ready for Cirque du Soleil. I am 8 months out of treatment.

Barbara

pjjenkins's picture
pjjenkins
Posts: 173
Joined: Mar 2009

Wow, am I finding this interesting. I was not really aware of back/leg pain until about a year after treatment when I, for some reason, started having difficulty lifting my weight going upstairs on my right leg - sensing mostly a hip pain. I figured it was due to one of those injuries you don't notice much because I had a specific spot of pain on the top left of my right kneecap. Knowing injuries like this can take forever to heal, I basically ignored the problem. Gradually I shifted to going up stairs one at a time routinely - along with my young grandchildren. Then one day in late Feb/Mar... exactly two years after treatment, I almost couldn't walk at all so I consulted my PCP.

She ordered x-rays which show arthritis of both my lower spine and knees - not my hips. So I have started PT to conserve motion, etc. It has helped to an extent but I still feel there may be soft tissue damage of some sort somewhere because I still can rarely lift with my right leg and, in fact, there has been NO improvement in certain of the PT exercises.

I also cannot lie on my right side comfortably for more than about 5 minutes without hip pain developing.

Sorry for rambling but I am beginning to wonder if all this hip and leg pain we are reporting IS late radiation effect which is not properly recognized by the medical establishment. Not that they can do much but alleviate pain and conserve function to an extent.

That said, maybe it is coincidental and we are experiencing only our own tribulations. I always wonder what is treatment/disease related and what is "normal" aging.

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

Hi Everyone--

This seems to be a common complaint for many after receiving pelvic radiation. I, too, have suffered from this and tightness, limited range of motion and sporadic pain in my hip area. I truly believe this has everything to do with the radiation. It can do a number on the integrity of our bones and causes osteopenia/osteoporosis for many people. If anyone has not yet done so, having a bone density scan would be a good idea, to assess the condition of your bones. I had one in March 09, about 6 months after my treatment ended, and it showed osteopenia. I believe this condition can cause a certain amount of pain and weakness. There are things one can do to help this--calcium, magnesium and Vitamin D, along with a diet rich in calcium, and weight bearing exercise. I was referred to an endocrinologist who wanted to do the Reclast IV on me. I refused that after learning of some of the side effects. So, I continue with the above supplement plan and exercise. It's unfortunate that there are so many of us who seem to experience this, yet the doctors turn a deaf ear.

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

Hi Dawn.  I just found your post buried in this thread and apologize for my late response.  I hope you are doing well and that your recovery is continuing on a forward path.  Your experience was almost identical to mine regarding initial diagnosis.  I saw my internist--she told me I had a bleeding hemorrhoid.  But due to the fact that I had not yet had my first screening colonoscopy at age 54, she referred me to a colorectal surgeon for the scope.  At my meet and greet appt. with the CR doc, she was concerned that my bleeding may not be caused by a hemorrhoid, so she did a rectal exam on me and told me she was 99% sure I had anal cancer.  Two days later, I had a colonoscopy, at which time she did a biopsy.  The results came back the following week showing I had squamous cell anal cancer.  I had the same chemo as you and 30 rad treatments.  That all happened back in 2008.

Fast forward to 2014 and I have dealt with hip and back pain through the years since treatment.  I have had several DEXA (bone density) scans and my most recent one shows that the osteopenia seen on prior scans has now progressed to osteoporosis in my right hip.  My left hip and lumbar spine still remain in the osteopenia range.  I was started on Fosamax.  Your pain, I'm sure, has everything to do with your treatment.  It is such a common complaint among us who have had pelvic radiation.  If you have not had a DEXA scan, I would highly recommend one to get a baseline assessment of your bone health in the affected area.  If you have had a baseline, then depending on how long ago that was, it may be time for another scan.

As for blood counts, mine took years to get back in the normal range.  My internist was always freaked out about it, but my medical oncologist not so much.  Being that you are not yet that far out from treatment, do not get overly concerned about those counts.  They may take awhile to rebound.

I would say that, in many ways, your journey mirrors mine.  I am here, about to celebrate my 6-year survival anniversary, so take heart in knowing that long-term survival and good quality of life are very, very possible after this treatment.  Hang in there!

Martha 

sandysp's picture
sandysp
Posts: 750
Joined: May 2011

So surprising to hear that you had the experience of having a bowel movement everytime you went to pee. I got to thinking this was normal it went on for so long.

My GI doctor had never seen anal cancer before mine and he had been practicing well over 25 years, so they really don't have a clue, these GI's. You have a much better chance of getting a real diagnosis if you can "man up" and go see the best colorectal oncologist surgeon oncologist you can find. 

I think the medical community is really under educated about rare cancers and rare diseases. 

It is wonderful we have each other to push us forward to seeing to it you, like so many of us were either misdiagnosed or not diagnosed, or diagnosed and then treated incorrectly, not according to protocol. Two of my doctors told me I needed "surgery right away." My internist referred me to a "general surgeon." I don't live in the outskirts of North Dakota. I live in Westchester County. My doctor went to Yale! What is wrong with this picture????

And I have excellent insurance. My doctor, while I was still in shock over the diagnosis and his urgent plea to have surgery, said my insurance might not pay.

I have had to make some changes in my doctors. I hope and believe this experience has opened my eyes quite a bit.

Good for you for finding us and putting your concerns out there.

Keep us posted. We are rooting for your proper diagnosis and treatment. You have been uncomfortable long enough.

Sincerely,

Sandy (last tx August 18, 2011, Stage III with lymph node involvement)

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