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Symptoms for 2 years but didn't know they were symptoms

Anabel_Lee's picture
Anabel_Lee
Posts: 32
Joined: Mar 2014

About two years ago, I noticed, what looked to be skin tags on the outside of my anus. Didn't think anything of them. They didn't hurt and I'd read that tags there do happen. I also started to get itching in the area, which was odd to me but it only happened once in awhile and once I gave it a quick scratch, it would go away. It happened so infrequently that I didn't even consider getting a cream or mentioning to a doctor.

Fast forward to November of last year. I went to a dermatologist about a mole that was about 4 centimetres away from my anus. I'd had it for years and it didn't worry me but I figured I'd get it checked. The derm told me the results came back abnormal and that squamous cell carcinoma does happen in that area. I was so relieved to hear it wasn't melanoma, I didn't even worry about this other thing he mentioned. Until I got home and googled SCC. I grabbed a magnified mirror and a bright light and took a good look down there. I saw a few things that fit SCC. I had to wait 2 months to go to a plastic surgeon (don't know why I was referred to that) the day of my appt, the doctor looked at me and said I needed a General Surgeon.

Luckily I got in to see one 9 days later (today) the doctor is great. Wonderful bedside manner, head of quite a few depts, Chief of Surgery for the entire island I'm on ( it's a big ass island with many hospitals ) He did a DRE and said he was going to put a small scope in me. The whole thing only lasted maybe 2 minutes. I'm not even sure what that scope was. He said he didn't feel anything in there and that it was smooth ( that's a good thing, right?) but he said the "tags" as I thought they were, are not typical and that and the remainder of the mole I had biopsied have to come out. He also said my mole biopsy was consistent with HPV. I had no idea! The derm never told me that.

My surgery is in 4 weeks and I'm scared. I know it's going to be cancer. I don't see how the HPV and the lumps outside my anus and the itching can all be nothing.

What scares me most is that all this was going on for 2 years. I really had no idea it could be anything serious. If I had, then I would have gone in sooner to be checked.

I guess what I'm wondering is how long some of you had symptoms. Guess I'm looking for reassurance that even with the signs being there for so long, it doesn't mean the worst.

mp327's picture
mp327
Posts: 2949
Joined: Jan 2010

I'm sorry that you are having to go through this, but it sounds like you have a very good doctor.  Anal cancer can be either on the outside (anal margin) or in the anal canal (inside).  Both are usually HPV-mediated diseases.  My cancer was found inside the anal canal and was not treated by excision, rather I underwent 6 weeks of radiation and 2 rounds of chemo.  Sometimes, cancer that is external can be excised successfully without further treatment if clear margins result.  I hope you'll get the biopsy results soon so both you and your doctor know what you are dealing with.  It is good that you will be having these lesions removed. 

You asked about symptoms.  I had symptoms for quite some time, but until I noticed bleeding, I always shrugged them off as other things and had no idea I had cancer.  Your symptoms may be different since you say that your lesions are external.  I always felt bloated, had chronic constipation, and after a bowel movement, never felt completely emptied out.  I also had weight loss and fatigue.

I'm glad you have come to this site for support and information.  We all try to help each other as much as possible and we will help you too.  I wish you all the best and hope you will keep us posted.  Take care. 

eihtak
Posts: 850
Joined: Oct 2011

Hi and welcome, and I would like to say some magical words to turn off the anxiety and worry but know that once those worries take hold that is not such an easy thing, none-the-less, I hope you can occupy your mind with something less worrisome until you have all the facts, and then cross those bridges when you need. If by chance you need, we are all here to help! It does sound like your doctor is on the right track and you are in good hands.

I was diagnosed/treated almost 3years ago now, and so far doing great. My tumor, like Martha, was also in the anal canal and along with an initial clinical trial was treated with the standard radiation/chemo, but also required colostomy surgery. As far as symptoms go, I foolishly ignored or attributed them to several other things for a loooong time. As many people I had life happening with family and was not focused on myself and my health. Looking back, I probably had mild symptoms start a good 2 years before they progressed to the point that brought me in, at which point I was staged 3B. Unfortunately this along with misdiagnosis is a common occurance for many here, yet when all is said and done we are here and mostly doing very well.......you will too. (if this even is your path)

I will keep you in my thoughts and prayers for relief from worry while you wait, and continued health and happiness as you move forward.

Anabel_Lee's picture
Anabel_Lee
Posts: 32
Joined: Mar 2014

Thanks for the responses. I'm glad to hear that you're both doing well. I'm going to do my best to just enjoy myself between now and the surgery and try my best not to worry until I'm told something to worry about. I am fortunate that I have such a good doctor and his specialty is colorectal cancer but I'm so frustrated at myself for not getting checked earlier. I hate the idea that these things have been around so long and I was aware of it. They just really looked like skin tags.

My doctor didn't say they were cancer. Just said they didn't look typical and he wants them off. Then he finished off by saying it may turn out to be nothing. Glad he has an optimistic side :)

I told him that my hope is that if it is cancer, that it's all external. I don't care if I have large areas cut out....I don't care if it hurts to go to the bathroom for awhile. I just don't want it inside me. I don't know if outside or inside makes a difference in prognosis or treatment. I just don't want it in me.

Yep, I'm going to have to distract myself with a lot of fun things for the next few weeks. Maybe this is the time to try skydiving Lol

mp327's picture
mp327
Posts: 2949
Joined: Jan 2010

I'm glad you are trying to keep things in perspective.  DO NOT beat yourself up over not getting checked sooner.  It is human nature to think something like this can't possibly be serious.  When I noticed the bleeding, I automatically convinced myself that it was nothing more than a hemorrhoid.  When I was told I had cancer, I was in total shock.  Keep in mind that even though your skin tags could be caused by HPV, that doesn't necessarily mean they are cancerous.  I hope that the biopsy will show that they are benign and that this will just be a minor issue for you that will be taken care of and over! 

Anabel_Lee's picture
Anabel_Lee
Posts: 32
Joined: Mar 2014

I'm realistic and figure the itching, the lesion that showed HPV and the growths must be something I don't want but at the same time, as you said, the tags, growths (whatever they are) could be benign or at least an early stage. It's just so easy to forecast to the worst case scenario. I just keep telling myself that if a doctor hasn't told me I have cancer than I shouldn't be doing it. Last time I checked, I didn't have PHd after my name ;)

And you're right. It's so easy to dismiss symptoms, especially if you have no clue that they're symptoms to begin with. Who doesn't get an itchy ass once in awhile, bleeding can be hemmoroids, mucous can be normal, etc....

Marynb
Posts: 1134
Joined: Aug 2012

I had very similar symptoms for years and also an external lump on the anus. I am just wondering why you have to wait to have a biopsy? Also, the treatment I had did not include surgery at all. Chemo and radiation is the standard protocol once there is a diagnosis. Also, colorectal cancer is not the same as anal cancer. Anal cancer is rare and it is important that you go to a doctor who is an expert in anal cancer. I don't mean to worry you, but you need to get the right care.

mp327's picture
mp327
Posts: 2949
Joined: Jan 2010

In cases of anal cancer that is on the outside, I don't believe chemo/radiation is normally done if clear margins can be obtained during excision surgery. 

Marynb
Posts: 1134
Joined: Aug 2012

Martha, mine was on the outside, but I was told that surgery would compromise function and even if I had surgery, I would need the standard treatment. I went to 2 top rated cancer hospitals for opinions. Neither recommended surgery.

mp327's picture
mp327
Posts: 2949
Joined: Jan 2010

I'm sorry that in your case, standard treatment was needed.  In some cases, though, excision is done and if clean margins are obtained, chemo/rad is not done.  This is just another example of how individual each case is. 

Anabel_Lee's picture
Anabel_Lee
Posts: 32
Joined: Mar 2014

I was told that the appt date I got was the soonest they could get me in. I'm assuming that if the biopsy showed something, then I'd be referred to the proper people for it. The reason I was referred to him is because I needed a General Surgeon and he's the one with the most experience dealing with that area. The mole that showed HPV still has to come off and then there's the 2 small lumps.

I don't know much on the topic but I would thought that surgery would be used anytime there's an external lump and chemo/radiation would be used if it was at a later stage. Guess I'll just find out as I go along. All I know for now is the removal of the lumps is in 4 weeks.

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

I had skin tags down yonder. One formed - I saw someone in the colo-rectal department (don't remember her name or title) and was told it was a tag - nothing to worry about, no removal recommended because they have a tendency to grow back and also because that area is so delicate. She said it would cause more problems to remove it than it was worth. I went on my way, thinking it was nothing and didn't worry too much about it.

About a year or a year and a half later a second growth appeared, much more irregular than the first. I then saw a very experienced colo-rectal surgeon who told me we should remove and biopsy both growths. We did, and the result came back squamous cell cancer, stage 2. Margins were not clean. Proceeded with the standard chemo and radiation treatment.

 I hope your tags are nothing - but based on what happened with mine, I would definitely recommend seeing someone who has experience with anal cancer.

Anabel_Lee's picture
Anabel_Lee
Posts: 32
Joined: Mar 2014

Just curious how long you had the "tags" before getting them checked out. Where they bothering you? How was the appearance of your 2nd one different and were both cancer or just the 2nd one? (sorry for all the questions :) I get so confused with what I read online (maybe I shouldn't be reading up on it at all) because it always says certain staging goes by size. Like, stage 2 is when the tumour is over 2 centimetres. Does size really matter?

 

I hope you're doing well now :)

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

Yes, I'm doing well now (over 5 years out) - very well - thanks for asking. The treatment (should you end up needing it, and I hope not - benign tags in that area are definitely possible) can be tough but, as we say, very do-able.

I had the first tag for about six months before I got it checked out. It was oval and rather smooth. Hard to tell what size it was, but I'd say about 1/2 cm. It wasn't sore and didn't bleed, but had a bad odor. I had to use feminine cleaning wipes 2-3 times per day to keep the odor at bay. The second one showed itself about 8 months later (in my previous post I said about 1-1/2 years, sorry, after thinking more I believe it was more like 8 months later). It looked more like a little flower. No odor, but it was sore and bled (only once - I was very careful with wiping after that one time). Prior to the first growth showing itself, the only symptom I can remember is terrible constipation.

My colo-rectal surgeon said both growths were part of one tumor and that the entire tumor was 2 cm in size and connected the two external growths internally, if you know what I mean. The external growths were what showed but the tumor existed internally too.

From what I understand (and others, please correct me if I'm wrong) the treatment is the same regardless of staging. An important factor is whether or not lymph nodes are involved, enabling the cancer to spread. Mine were not involved, luckily.

If you have any questions at all, please feel free to ask.

 

OMG 1012
Posts: 61
Joined: Dec 2012

My cancer was on the outer side of my anal canal nothing internal. thought it was a hemmorhoid.  Had surgurey to remove hemmy and that is when they found it. They were leary and told me they could watch it OR I could have treatment, I opted for the treatment and I had full treatment to anal area and chemo  (not my lymph nodes)  I am 14 months out and doing well (still have days with pooping issues but all in all OK)  My best wishes to you!

Anabel_Lee's picture
Anabel_Lee
Posts: 32
Joined: Mar 2014

Thanks for your response :) I'm curious how long you had this "hemmie" for before they figured out what it was. That's my biggest concern. 

I'm very happy that you're doing well!

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