Newly diagnosed but I have no real information

Suzyqw1 said:

I, too, have rectal cancer. 

I, too, have rectal cancer.  I had a colonoscopy which which showed 2 polyps, one of which was cancerous.  It was removed then the area was biopsied and tattooed later that week.  After that, I had a CT scan and endoscopic ultrasound, both of which showed no evidence of cancer.  The medical oncologist recommended that I wait and watch the situation.  The radiation oncologist recommended either abdominal surgery or a transanal excision with possible radiation.The tumor board said that I should have the transanal excision, which I did.  The surgery, which was painless, required an overnight stay.  Now I'm scheduled for a scope every 3 months then another colonoscopy in October. 

It's difficult to figure out what to do when your doctors give you different opinions.  I was glad to have a recommendation from the tumor board.

When I was trying to figure out what to ask the doctors, I posed the question on google.  There were many sites there that dealt with this question.  Check out the colorectal board on this site.  It's very helpful. 

A cancer diagnosis is like being hit with a truck.  It knocks you for a loop but can be managed.  There are many people on these boards who have excellent information.  I'm a relative newbie having been diagnosed in October last year.  My husband thinks that it's depressing reading posts from other cancer survivors, but I find it very helpful.  It's comforting to me to know that there are others who are coping with the same problems that I am.  Their advice and encouragement give me strength.

Good luck!

Thanks Suzy

You have made me feel better already.  I never heard of tatooing until you mentioned it.  I have a feeling I will be as versed in this terminology as you all are soon.  Just something else to add to that 'life resume' I guess. 

I'm all kinds of emotions since learning this information.  I even felt disappointed because we still don't know what is causing ten years of upper abdominal pain.  I was told that we will look at that problem later, as this problem takes priority.  Pretty good advice. 

I talked with a nurse that said the surgeon is probably looking ahead when he said we must do this.  So I will be having that surgery next week.  I'm hoping that is it, but I suppose I should be prepared for what is next.  I won't get to see any docs again until the day of my surgery.  I'm amazed at how most of my visits with the doctors involve procedures and no actual discussion. 

Thanks again for your reply.  Big hugs!

Suzyqw1 said:

 What type of surgery are

 

What type of surgery are you having?  Hopefully it will go as smoothly as mine did.  The worst part for me was drinking the Go Lightly solution the day before surgery. 

I'm lucky, maybe naive is the word, because after my diagnosis, I really didn't obsess about my predicament.  I just figured that I had cancer and was going to have surgery, chemo., and radiation.  I knew that others went through or were currently going through the same experiences, and I knew that I could, too.   Thank goodness I've only needed the surgery so far.

My husband has had abdominal pains for years.  He's had upper and lower GIs, a barium enema, plus an endoscopy and several colonoscopies.  All the doctors found was a hiatal hernia and acid reflux.  That was good news.  However, no matter what he takes, his stomach still hurts occasionally. 

Keep positive thoughts and you'll do fine.

Suzy

 

Don't really know the name

I don't really know the name of the surgery.  I know he is going to cut more of the area out, look for more with a microscope and then cauterize the area.  Even when I asked the nurse, there was no official name for it.  I feel he was a bit uncomfortable with the 'wait and see' decision of the oncologist, so he is doing more of what he can do for me as a surgeon.  The cancer is more in the anus than the rectum, so I am a little nervous about it because he definitely said it will hurt.  I won't be staying in the hospital from what I have been told.  Go home that night, so that's a good thing.  I hope they give me something to numb the area though.  Then after he evaluates what he finds, we go from there.  I really don't know a lot.  Kind of a weird feeling to be sure.

The stomach thing definitely bothers me.  It's been every day for tens years.  I feel for your husband, especially not knowing how to get rid of it.  Absolutely nothing gives me relief.  All I have been told from previous scopes and CT's is a hiatal hernia and irritation of the stomach lining.  It's definitely more than that.  Pretty painful at times.  Even after they cut that first little bit out 'down below', my stomach seemed much more angry than usual. 

I just have to fast a little bit and do a couple of enema's for my prep.  Can't say I ever want to do that complete clean out again.  Yuck! 

I'm feeling pretty optimistic so far.  A little scared of course, but knowing it could have been much worse had I not had the colonoscopy when I did. 

Thanks again,

Michelle  :-)

 

 

mp327 said:

SMD15

I have to admit, I got a little lost in your post, but I'm sorry you are dealing with all of this confusion and unanswered questions.  Just to make sure I understand, you have rectal cancer, not anal cancer?  Has this been confirmed by a biopsy? 

I am quite familiar with anal cancer, having been diagnosed in 2008 and undergoing 6 weeks of chemo and radiation.  At this point, I am doing well.  Should you have to go through this same treatment, I will tell you that it can be brutal, especially towards the end.  Many on this board have been through this as well and I think they would agree.  However, we are all still here, having gotten through it and recovered.  Some deal with long-term issues, but they are usually not anything that cannot be managed. 

When you get more information about your specific diagnosis and treatment, please come back and update us.  Should you be getting this treatment, we are here to help you and share any information that you'll need to make this treatment go as smoothly as possible.  I wish you all the best.

Martha

Hello

I am so sorry for the confusion Martha.  It really IS confusing.  My online records say Rectal Cancer but all of my conversations with the doctors say Anal Cancer.  And the diagnosis is Squamous Cell Cancer in situ.  From what I have read this is the earliest stage of anal cancer and the doctors have said the same.  The doctors say this is caused by HPV.  They added this is the same type of cancer as cervical cancer.  My biopsy was taken during my colonoscopy.  I am pretty sure I was lost in the cracks when the pathology report came back because the doctor that did the biopsy was on vacation.  I would imagine that is why my situation came about with the non-stop phone calls.  Dead silence to phone ringing off the hook with many procedures and doctor appointments. 

The procedure next week involves taken more tissue and more biopsies, then as the surgeon said specifically he will be 'burning the area'.  When I asked if it will be painful, the doctor said if it was in the rectum, it would not be too painful at all, but since it is in the anus it will be painful.  It was about then that I went numb (blank) again and don't remember a lot of what happened, or what he said after that.  I went alone to that appointment because of what I felt was good news, the week before at the oncologist.  I honestly thought the surgeon was going to say, you are lucky girl, that was a close call, now go away. 

So I feel pretty lucky it was caught when it was.  Especially after some graphic conversation with the oncologist the week before about how lucky I was.  However, I am still confused, worried and a little scared as to what exactly comes next week and of course after. 

 

mp327 said:

SMD15

Thanks for your response--your situation seems a little more clear to me now.  Carcinoma in-situ is usually not treated with chemoradiation, which is probably why your doctor is going to do the procedure next week.  This will probably let him know how invasive the bad cells are and whether or not you will require further treatment at this time.  Unfortunately, with cases of confirmed in-situ, the treatment is usually just watch and wait. 

I will tell you that I understand your fears about having the procedure done and the possible pain it may cause.  But I will also tell you that back in 2010, two years after my treatment ended, my colorectal doctor discovered 3 internal anal condylomas (warts) during my regular follow-up exam.  She told me she did not believe they were cancerous, but that they must be removed so that they didn't turn into cancer.  I underwent the procedure, dreading it for the same reasons you are dreading yours.  However, I am happy to say that I recovered really quickly and required very little pain medication.  The biopsy results were negative, thank goodness.  Now, exactly how your procedure will differ from mine I do not know.  I suppose it will depend on how deep the tissue samples are taken.

I do believe the doctor is doing his best to make sure that you do not have invasive cancer at this time.  I wish you all the very best and hope you'll let us know the results.

Martha 

Thank you!

You worded that so clearly and I thank you.  I am feeling that this is exactly what my doctor plans to do next week.  I hope it is as pain free as what you described you had in 2010.  The wait and see approach was the feeling I got from the oncologist, but I felt the surgeon wanted to be sure by doing what he is doing next week.  Overall, I'm pretty grateful.  Don't much want to be bothered by all of this, but who does?  I will report in, hopefully with good news next week.  Thanks again! 

 

 

mp327 said:

SMD15

I wish you all the best and want you to know that we are all here for you!

Martha

Very nice!

Thank you Martha!  That means the world to me.  It really does!

Michelle

 

Lorikat said:

both terminologys were used when I was diagnosed.  Turns out that my tumor was straddling the area between anal and rectum.  I was diagnosed with Squamish cell invasive anal Cancer.  4 years since dx and all looks ok.  Hugs..

 

Hello Lorikat

I think I have figured this out.  It is definitely anal cancer, as four doctors have said that.  Three gastros and the oncologist.  My confusion was in my records that read rectum.  I researched some coding yesterday and it looks like rectum/anal are the same medical coding, until the code gets more specific.  Of course I don't even know that for sure.  I guess I will have all of this down soon enough though. 

I just remembered yesterday when I was in the bathroom (where I get my best thinking done), that I did ask the last gastroenterologist if this was similiar to Farah Fawcett and he said yes, just not nearly as advanced and I was lucky because of that.  Farah was the first time I had ever heard of such a thing. 

It's comforting to me hearing your story and the other posters, which have turned out okay.  I think when they say cancer, your mind tends to first overload and then try to sort.  And thanks to this forum, I am sorting much better and I thank you all! 

I was wondering last night, what was everyone's reaction when they first learned they had anal or rectum cancer?  Confusion, fear, sadness, all of the above, more? I have applied the five stages of grief.  I told my daughter in law, a few weeks ago, I had no idea they all happened within minutes.  I thought it was more of a process.  Since then, it is more of a process again.  The first couple of days, whoa!

Thanks again!

Michelle