Treatment Begins

Wisteria83

Today I begin treatment.  I'm nervous, but mostly I just want to get started and get through it.  I've had breakfast and Xeloda and the anti-nausea med and it's not even 7:00 yet.  The time change is messing with me too.

I go for Chemo at 10:30 and radiation at 2:00.

When I went for radiation planning, they put four stickers on me.  One with a little metal bb wend directly on my anus, and I was told to just take it off right after the testing was completed.  The other three were small circular stickers with an X marked on them, one just above my pubic bone and the other two on the outside of each hip/thigh area.  I was told that they wouldn't fall off and bathing was ok.  Well, on Saturday, the one on my left side fell off, and I'm wondering how they are going to deal with that.  They told me that they don't use the tatoos anymore.  I'm not sure how they will line up the beams without that sticker to show them where to aim it.

So far, this has all felt surreal.  From November when I began having symptoms, until now, it's been just one thing after another.  Doctor visits, tests, diagnosis and now finally, treatment begins to rid my body of this unwelcome invader.  I realize that I'm lucky to have been diagnosed so quickly (relatively).  But I can't help wonder how on earth the dr. who did my colonoscopy in December missed it, and just kept treating me for hemorrhoids.  If I hadn't kept bleeding and complaining, how long would it have taken?  When he did the sigmoidoscopy in January, he said it looked like a different person's bottom, and the path results showed carcinoma in situ and displasia.  Three weeks later, at "hemorrhoid" surgery, path results came back positive for cancer that's now T3.  How is that even possible?   That it could grow that quickly?  Still blows my mind.

Anyway, I won't ever have answers for those questions, so all I can do is look forward and do my best to get through this treatment.  It's not like I have a choice.

Jumping in with both feet now!  

Wis

 

eihtak

Wisteria83.....

Know that when you jump in you won't be alone.....we are here to keep you afloat!!

Also, take some comfort in knowing that many people here have been mis-diagnosed (usually hemmorrhoid related) when initially seen. It is unfortunate, but like you said, have little choice but to move forward now.

Its been over 6 years since I began this journey but I know I felt better once actively starting treatment (until side effects set in, lol) ....... but still glad to be fighting back!

Please keep us posted and know I'm thinking of you today and as you continue.

katheryn

mp327

Wis

I hope all will go well for you today.  I can truly understand your frustrations about being misdiagnosed.  As katheryn has stated, that is the way many people begin this journey, including me.  We are told we simply have hemorrhoids and are dismissed, only later to find out that we have a disease that has the potential for some very serious consequences.  I'm glad you are beginning treatment--it will give you a sense of control.  Please keep us posted as you move forward in your treatment.  I wish you all the very best!

Martha 

mxperry220

Colon Rectal Surgeon

May I ask if the doctor that did your colonoscopy was a colon rectal surgeon?  Many Gastroenterologists and primary care physisicians misdiagnosis anal cancer tumors as hemmoriods.  If you do not have a colon rectal specialist assigned to you I would strongly urge you to have one during this process.  I was diagnosed with anal cancer in 2008.

Mike

Mollymaude

Wis

Wis, thinking of you. i agree about the surreal part and for me after treatment it almost felt like it happened to somebody else. it is pretty weird you didn't get diagnosed in December if it was that big a month later. I'm just glad you were persistent and kept "bleeding and complaining" as you put it so you did get diagnosed. Best of luck in treatment; BTW I got the tattoos and I finished treatment in January 2016.

Wisteria83

eihtak said:

Wisteria83.....

Know that when you jump in you won't be alone.....we are here to keep you afloat!!

Also, take some comfort in knowing that many people here have been mis-diagnosed (usually hemmorrhoid related) when initially seen. It is unfortunate, but like you said, have little choice but to move forward now.

Its been over 6 years since I began this journey but I know I felt better once actively starting treatment (until side effects set in, lol) ....... but still glad to be fighting back!

Please keep us posted and know I'm thinking of you today and as you continue.

katheryn

Katheryn

 Thank you.  I'm so glad that you are still here to help others like myself even though your journey began more that 6 years ago.  I DO feel better to be finally, actively doing something.  It's scary to know what I may have to look forward to, but I'd rather have the knowledge already and not need it, than to need it and have it take me by surprise. 

Wis

Wisteria83

mp327 said:

Wis

I hope all will go well for you today.  I can truly understand your frustrations about being misdiagnosed.  As katheryn has stated, that is the way many people begin this journey, including me.  We are told we simply have hemorrhoids and are dismissed, only later to find out that we have a disease that has the potential for some very serious consequences.  I'm glad you are beginning treatment--it will give you a sense of control.  Please keep us posted as you move forward in your treatment.  I wish you all the very best!

Martha 

Martha

Thank you.  No worries on keeping y'all posted.  I have a feeling I'm going to be having lots more questions as treatment progresses.

tanda

wisteria 83

I doubt that your tumour would have grown that much in such a short time, although I suppose it is possible.

I have a feeling that doctors don't think about anal cancer when they begin trying to diagnose bleeding. Maybe they  justconcentrate on guiding the scope around the colon .

I had some heavy bleeding in 2013 and the dr  (without doing anything) was convinced it was hemmorhoids...he even looked at my 2009 colonoscopy and pointed out large internal hemmorhoids.  The bleeding stopped, but started again in 2014 and I could feel a mass that I thought was a hemmorhoid.  He did a flex sig  and  told me that I had a prolapsed rectum, but said that he had found a hard place and took a few tissue samples for a biopsy. The pathology came back with a diagnosis of anal dysplasia; he said not to worry because the surgeon could just clear it.  So, I obsessed about the rectal prolapse. 

I went to the surgeon and told her I was very upset about the prolapse and possable surgery.etc,etc.  She looked at the report and a video of the sigmoid and said 

she wasn't so sure about the prolapse ...she wanted more tissue and scheduled a biopsy.  I pressed her for more details; she didn't say anything specific,but mentionned cancer and a few other things.  I then  knew that the minute I walked into her exam room, she had a pretty good idea as to what was going on.

So, how was the tumour missed or mistaken  for rectal prolapse? Often imaging or other studies are to confirm what you already think and I guess this dr was still thinking hemmerhoids...why not a colonoscopy  (I had on in 2009).  By the way, this Dr is a giant in the field...on every "Best Drs " list, has even written a text book on endoscopy. Maybe someone with less over confidence would have taken more time and been more thorough?

tanda

wisteria 83

Hi Wis,

Glad everything seems to have fallen into place, cost issues settled,etc and the journey has begun. Your treatment team really sounds like they are on the cutting edge and very organized.  We will be here, answering questions, cheering you on and providing support.  Hope all goes well...please keep us posted.

Tanda

mp327

tanda said:

wisteria 83

I doubt that your tumour would have grown that much in such a short time, although I suppose it is possible.

I have a feeling that doctors don't think about anal cancer when they begin trying to diagnose bleeding. Maybe they  justconcentrate on guiding the scope around the colon .

I had some heavy bleeding in 2013 and the dr  (without doing anything) was convinced it was hemmorhoids...he even looked at my 2009 colonoscopy and pointed out large internal hemmorhoids.  The bleeding stopped, but started again in 2014 and I could feel a mass that I thought was a hemmorhoid.  He did a flex sig  and  told me that I had a prolapsed rectum, but said that he had found a hard place and took a few tissue samples for a biopsy. The pathology came back with a diagnosis of anal dysplasia; he said not to worry because the surgeon could just clear it.  So, I obsessed about the rectal prolapse. 

I went to the surgeon and told her I was very upset about the prolapse and possable surgery.etc,etc.  She looked at the report and a video of the sigmoid and said 

she wasn't so sure about the prolapse ...she wanted more tissue and scheduled a biopsy.  I pressed her for more details; she didn't say anything specific,but mentionned cancer and a few other things.  I then  knew that the minute I walked into her exam room, she had a pretty good idea as to what was going on.

So, how was the tumour missed or mistaken  for rectal prolapse? Often imaging or other studies are to confirm what you already think and I guess this dr was still thinking hemmerhoids...why not a colonoscopy  (I had on in 2009).  By the way, this Dr is a giant in the field...on every "Best Drs " list, has even written a text book on endoscopy. Maybe someone with less over confidence would have taken more time and been more thorough?

tanda

I think one thing about colonoscopy that trips up many doctors is that it is a procedure designed specifically to look at the colon and perhaps the rectum, so they are negligent when passing the scope through the anal canal and not taking a look at that area too.  From what I understand, the scope must be turned almost backwards for them to view the anal canal, which is why anoscopy is so important when bleeding occurs, which gives a full view of the anal canal.  Doctors who presume that any rectal bleeding must be coming from the colon or rectum need to be educated on anal cancer because too often, if a colonoscopy is clean and nothing is found, the patient is dismissed with no further evaluation and still experiencing bleeding.

Knowing what I know now, if I was someone who was experiencing rectal bleeding, I would see a colorectal doctor about having a colonoscopy.  However, I would also ask them about the possibility of anal cancer and what would be the best exam to detect that disease.  Unfortunately, a high percentage of people know nothing about anal cancer or are under the impression that only people who have had anal sex are at risk.

Martha

Phoebesnow

Colonoscopy

the first doctor who did colonoscopy and discovered the cancer told me to tell  doctors who did the next one to pull it out slowly.  I have done that since then.  I have had 3 different doctors do my colonoscopies.  

 

csalek

You will get through this

I finished my treatment one year ago on February 3rd....this will be you next year. This board was a God send and helped with so many issues that arose. I can say I was prepared because of this group. Hang in there-you just get through it...it is almost worse looking back on it. Stay strong and postiive !

Wisteria83

mxperry220 said:

Colon Rectal Surgeon

May I ask if the doctor that did your colonoscopy was a colon rectal surgeon?  Many Gastroenterologists and primary care physisicians misdiagnosis anal cancer tumors as hemmoriods.  If you do not have a colon rectal specialist assigned to you I would strongly urge you to have one during this process.  I was diagnosed with anal cancer in 2008.

Mike

Doctor

Hi Mike,

The day after I started bleeding, was two days before Thanksgiving, and my youngest son, his fiance and new baby came down from CT for the holiday.  The amount of bleeding really alarmed me as I'd never experience so much as a spot before, and now I was going to the bathroom every 1/2 hour, all night long, with nothing but blood and clots coming out.  My husband took me to the ER in the morning, and a digital exam showed internal hemorrhoids.  This was the first time I knew I had them. I was dehydrated, so they gave IV fluids and took blood.  I was slightly anemic but not enough to warrant a transfusion. They weren't going to release me from the hospital unless I promised to see a specialist the next day, so they made an appointment with a GI for me for the following morning.  He has his own free-standing colonoscopy center, and he's the only doctor there.  I've never had experience with this kind of dr. before, so I just took his word for everything and followed his directions.  He ended up sending me to a surgeon, finally in February, when he realized my problem was beyond his abilities.  She is a general surgeon but mostly does colon/rectal/abdominal surgeries.  I like her very much.  She is competent, and very easy to talk to, and that's really important to me.  She was the one who gave me my cancer diagnosis, and referred me to my oncology team.  She will be doing my follow-up analscopies or anoscopies..(not sure the right word, I've seen it both ways.)

I have to add here that I've since seen the GI doctor on billboards on the roadside.  I don't know about you, but those guys who do that seem kinda sketchy to me.

Wisteria83

tanda said:

wisteria 83

I doubt that your tumour would have grown that much in such a short time, although I suppose it is possible.

I have a feeling that doctors don't think about anal cancer when they begin trying to diagnose bleeding. Maybe they  justconcentrate on guiding the scope around the colon .

I had some heavy bleeding in 2013 and the dr  (without doing anything) was convinced it was hemmorhoids...he even looked at my 2009 colonoscopy and pointed out large internal hemmorhoids.  The bleeding stopped, but started again in 2014 and I could feel a mass that I thought was a hemmorhoid.  He did a flex sig  and  told me that I had a prolapsed rectum, but said that he had found a hard place and took a few tissue samples for a biopsy. The pathology came back with a diagnosis of anal dysplasia; he said not to worry because the surgeon could just clear it.  So, I obsessed about the rectal prolapse. 

I went to the surgeon and told her I was very upset about the prolapse and possable surgery.etc,etc.  She looked at the report and a video of the sigmoid and said 

she wasn't so sure about the prolapse ...she wanted more tissue and scheduled a biopsy.  I pressed her for more details; she didn't say anything specific,but mentionned cancer and a few other things.  I then  knew that the minute I walked into her exam room, she had a pretty good idea as to what was going on.

So, how was the tumour missed or mistaken  for rectal prolapse? Often imaging or other studies are to confirm what you already think and I guess this dr was still thinking hemmerhoids...why not a colonoscopy  (I had on in 2009).  By the way, this Dr is a giant in the field...on every "Best Drs " list, has even written a text book on endoscopy. Maybe someone with less over confidence would have taken more time and been more thorough?

Tanda

You may be right.  Perhaps "overconfidence" played a part in your misdiagnosis.  A lot of these doctors...the more lists they get on, the more arrogant they get.  I'm willing to bet that because the majority of rectal bleeding is in fact from hemorrhoids, too many doctors just assume.  I would hope that when they are proven wrong, they take it as a wake-up call to pay more attention.

One thing that I found strange was that during the colonoscopy he found and removed three benign polyps, then a month later at the sigmoidoscopy he found another three more.  Do polyps grow that quickly or did he just miss them the first time around?  I'll never know.

 

Wisteria83

Phoebesnow said:

Colonoscopy

the first doctor who did colonoscopy and discovered the cancer told me to tell  doctors who did the next one to pull it out slowly.  I have done that since then.  I have had 3 different doctors do my colonoscopies.  

 

Colonoscopy

That makes sense.  Less of a risk of missing something important!

mp327

Wisteria83 said:

Doctor

Hi Mike,

The day after I started bleeding, was two days before Thanksgiving, and my youngest son, his fiance and new baby came down from CT for the holiday.  The amount of bleeding really alarmed me as I'd never experience so much as a spot before, and now I was going to the bathroom every 1/2 hour, all night long, with nothing but blood and clots coming out.  My husband took me to the ER in the morning, and a digital exam showed internal hemorrhoids.  This was the first time I knew I had them. I was dehydrated, so they gave IV fluids and took blood.  I was slightly anemic but not enough to warrant a transfusion. They weren't going to release me from the hospital unless I promised to see a specialist the next day, so they made an appointment with a GI for me for the following morning.  He has his own free-standing colonoscopy center, and he's the only doctor there.  I've never had experience with this kind of dr. before, so I just took his word for everything and followed his directions.  He ended up sending me to a surgeon, finally in February, when he realized my problem was beyond his abilities.  She is a general surgeon but mostly does colon/rectal/abdominal surgeries.  I like her very much.  She is competent, and very easy to talk to, and that's really important to me.  She was the one who gave me my cancer diagnosis, and referred me to my oncology team.  She will be doing my follow-up analscopies or anoscopies..(not sure the right word, I've seen it both ways.)

I have to add here that I've since seen the GI doctor on billboards on the roadside.  I don't know about you, but those guys who do that seem kinda sketchy to me.

Wisteria83

I have to agree with you about the billboard ad for a physician.  Not only tacky, but disconcerting, to say the least.  I should think that any physician with a good reputation would not have to resort to that.  Most specialists get patients through referrals from other physicians and have earned a bit of respect from their colleagues, based on how they have handled those referred patients.

As for cases of misdiagnosis, every time I read of another one I just want to scream.  That's how I started down this road.  Had I just dismissed the cause of my bleeding as a hemorrhoid, as diagnosed by my internist, I probably wouldn't be here today.  I honestly don't know what it's going to take to wake up some of these physicians.  I let my (former) internist know in no uncertain terms that I was very upset and that I would be finding another primary care physician.  I also told her I hoped that she would not make that same mistake with another patient and that any and all rectal bleeding should be properly and thoroughly evaluated.

Martha

Wisteria83

csalek said:

You will get through this

I finished my treatment one year ago on February 3rd....this will be you next year. This board was a God send and helped with so many issues that arose. I can say I was prepared because of this group. Hang in there-you just get through it...it is almost worse looking back on it. Stay strong and postiive !

Getting through it.

Today is my 4th treatment.  I don't feel a bit different, and really don't expect to for a while.  The fatigue is what is bothering me the most, and the pain up inside me.  Nights are the worst.  I'm up nearly every hour in spite of pain meds.  My lower back has been in a flare since surgery on 2/2.  I have herniated disks in my back, and laying on the table for treatment just about kills me, and I'm just grateful that it's only for a few minutes each time.

Learning so much from this group of survivors...the moral support is amazing!

Mollymaude

Wis thinking of you

Im sorry you are in so much pain. But glad you don't feel anything from treatment yet. My first week was spent in pain too because I was told I couldn't take Tylenol and ibuprofen anymore and new pain meds had to be used- I ended up on oxycodone and morphine eventually. In my second week my son had to have an emergency appendectomy and I was well enough to spend the night with him in the hospital and walk the couple of blocks over to my radiation treatment the next morning!

mp327

Wisteria83 said:

Getting through it.

Today is my 4th treatment.  I don't feel a bit different, and really don't expect to for a while.  The fatigue is what is bothering me the most, and the pain up inside me.  Nights are the worst.  I'm up nearly every hour in spite of pain meds.  My lower back has been in a flare since surgery on 2/2.  I have herniated disks in my back, and laying on the table for treatment just about kills me, and I'm just grateful that it's only for a few minutes each time.

Learning so much from this group of survivors...the moral support is amazing!

Wisteria

Just hang in there and soon this will be past history!  You can do this!

Lorikat

eihtak said:

Wisteria83.....

Know that when you jump in you won't be alone.....we are here to keep you afloat!!

Also, take some comfort in knowing that many people here have been mis-diagnosed (usually hemmorrhoid related) when initially seen. It is unfortunate, but like you said, have little choice but to move forward now.

Its been over 6 years since I began this journey but I know I felt better once actively starting treatment (until side effects set in, lol) ....... but still glad to be fighting back!

Please keep us posted and know I'm thinking of you today and as you continue.

katheryn

Ditto Katheryn...  almost 6

Ditto Katheryn...  almost 6 years for me as well...  we started our journey together I believe...

Lorikat

Wisteria83 said:

Doctor

Hi Mike,

The day after I started bleeding, was two days before Thanksgiving, and my youngest son, his fiance and new baby came down from CT for the holiday.  The amount of bleeding really alarmed me as I'd never experience so much as a spot before, and now I was going to the bathroom every 1/2 hour, all night long, with nothing but blood and clots coming out.  My husband took me to the ER in the morning, and a digital exam showed internal hemorrhoids.  This was the first time I knew I had them. I was dehydrated, so they gave IV fluids and took blood.  I was slightly anemic but not enough to warrant a transfusion. They weren't going to release me from the hospital unless I promised to see a specialist the next day, so they made an appointment with a GI for me for the following morning.  He has his own free-standing colonoscopy center, and he's the only doctor there.  I've never had experience with this kind of dr. before, so I just took his word for everything and followed his directions.  He ended up sending me to a surgeon, finally in February, when he realized my problem was beyond his abilities.  She is a general surgeon but mostly does colon/rectal/abdominal surgeries.  I like her very much.  She is competent, and very easy to talk to, and that's really important to me.  She was the one who gave me my cancer diagnosis, and referred me to my oncology team.  She will be doing my follow-up analscopies or anoscopies..(not sure the right word, I've seen it both ways.)

I have to add here that I've since seen the GI doctor on billboards on the roadside.  I don't know about you, but those guys who do that seem kinda sketchy to me.

Ditto.

Ditto.